Recent Updates      

Day 1 - Monday July 19, 2004
Surprise!!! It is a boy!! William Arthur Dexheimer was born at 6:31 am on Monday, July 19, 2004. He weighed 1 pound 3 ounces (540 grams) or just over the weight of 4 sticks of butter. He was born 16 weeks early!! Mommy was having contractions throughout the night and evidently, Will just couldn’t wait to meet us! Mommy had an emergency cesarean and he was whisked off to the NICU and was put on a ventilator to assist with his breathing. We finally found out an hour after he was born that he was a beautiful baby boy.

The Doctor did confirm that Mommy did have placenta abruption and that was the reason she went into premature labor. We were very lucky that it didn’t happen any sooner since it is the leading cause of second trimester miscarriages.

We had Pastor Peter from our church come and baptize Will as we just were not sure what could possibly happen. It was a beautiful ceremony right in the NICU. Pastor Peter used a small sea shell as the baptismal font. When Peter poured the water onto Will during the baptism, Will stretched his legs straight up into the air. It was a truly an amazing moment to see the power of Christ entering Will’s little body.

Thank you all for the prayers and support. We would not be able to make it through these challenging days without all of your love and support.

Day 3 - Wednesday July 21, 2004
Today Will had a head scan to check if there was any bleeding in his brain. We just received the test results and the Dr. explained there did not appear to be any bleeding (which is a very good thing). He will have 3 more head scans before he leaves the hospital. The Doctors and nurses tell us that there is going to be ups and downs and we have to take things one day at a time. Though he is a very strong baby he has many obstacles to go through before he leaves the hospital. They say we should plan on his release to be around his official due date, November 6, 2004.

Day 5 - Friday July 23, 2004
Today mommy came home from the hospital. It was a hard day because we left our little miracle baby there, but we all know that the NICU is the best place for him to be right now.

Day 9 - Tuesday July 27, 2004
Today the Dr. told us that Will has a blood infection, and that this was very common with baby’s born at his gestational age. They began to do a blood platelet transfusion to increase his blood cell count and they will continue to monitor his progress. He is a fighter and we are confident that he will overcome this hurdle. Today Will gained 5 grams.

Day 10 - Wednesday July 28, 2004
Will is a very strong little boy. He is now getting mom’s milk though a feeding tube and is gaining weight (grams) little by little!! They started feeding him 1/10 of a teaspoon of milk every 8 hours and now he is getting fed the same amount, but every 2 hours. We had another head scan today and the preliminary results came back good. The Doctor told us that he is doing very well for a baby his size. God has blessed with such a strong little boy and we thank Him every day for our miracle baby. Today Will gained 15 grams and he is now up to 595 grams.

Day 11 - Thursday July 29, 2004
First of all, we wanted to extend a heartfelt Thank You to our friend Steve Tycast who has spent many, many hours building and designing this wonderful site. Without his help we would not be able to keep all of our family and friends up to date. Thanks Steve! I can't imagine there are many 1 lb. babies that have their own web site.

Will continues to fight his blood infection. The amount of Oxygen and pressure they are giving him continues to rise and fall as well, and the nurses continue to remind us that this is a very common thing. Will gained 35 grams, so his weight now is 630 grams. (28 grams = 1 oz) So he now weighs 1 lb. 6 oz.

We have also learned that Will's NICU specialists and Dr.'s spend their time at both Children's Hospital in Minneapolis and at North Memorial Medical Center, so we are blessed to have such a talented staff available to treat our precious Will.

Continue to check this site often, as this will be a great way for us to stay in touch with everyone.


Day 12 - Friday July 30, 2004
Will continues to stay strong. Over the last several days we experienced something new on this journey. When we went to visit Will, at times he appeared to be restless and opening and closing his mouth. When we asked the nurse what was wrong, she explained to us that Will was crying, but we could not hear him because of the Oxygen tube that he had in his throat. As difficult as that was for us, the nurse told us that we should place our entire hand over his chest in order to hold him and calm him. It was amazing how he stopped crying and began to relax when we did this.

The nurses have also asked us if we wanted to change his diaper, but both of us just don't feel 'comfortable' quite yet in that department. During the day today Will was "not behaving" which is the way the nurses tell you that he is not having the best of days. They had to put him on a nebulizer in order to assist with his breathing and Oxygen levels. After that he again began to "behave himself".


Day 13 - Saturday July 31, 2004
Thanks to all of you for the e-mails that you have sent to us via the link on Will's web page (dexheimer21@yahoo.com). We look forward to getting these messages every day and it continues to remind of us of the many people all over the country we have pulling and praying for our Will. We are saving every e-mail that we receive so that some day we will be able to share with Will all of the wonderful messages and words of inspiration that you have sent!

Today we went to visit Will and Mommy changed his diaper for the first time. She also took his temperature. His feedings of Mommy's milk are now up to 2.5 ml every hour. This is huge progress from the 0.5 ml every 8 hours that he started on.

Dr. Camp also talked to us about his increasing need for oxygen support. Over the last several days his oxygen need has gone from 30% to 55%. The Dr. noted that they really must watch him closely to monitor him for possible chronic lung disease or heart duct issues. Will lost 5 grams today.


Day 14 - Sunday August 1, 2004
Will continues to fight his blood infection. His oxygen has been averaging 60% (they would like him in the high 20% range). The nurses also explained that with babies this little they tend to fluctuate significantly on their oxygen. Daddy changed Will's diaper for the first time today. Will's feedings of Mommy's milk are now up to 3.2 ml every hour, or over 76 ml per day. His facial features continue to evolve and we can even notice that he is growing. In fact, today we saw him try to peek his eye open just a little bit! Will gained 20 grams today. He is now at 1 lb. 7 oz., which represents an increase of over 21% from his birth weight.


Day 15 - Monday August 2, 2004
Today was a very important day as Will no longer is obtaining nutrients from his IV. He is now getting all of his nutrition from Mommy's milk. His infection culture came back positive, so they continue to use antibiotics to fight the infection. Will lost 20 grams today.


Day 16 - Tuesday August 3, 2004
Our family would like to thank everyone for the tremendous amount of support and prayers that you have bestowed upon us. It is truly amazing the number of prayer chains that Will is currently on. It is also amazing to be receiving e-mails from people all over the world who have visited his web site (Africa, Alaska, New York, Colorado, Michigan, California, Washington, Ohio, Florida, Wisconsin and Minnesota to name a few of the spots).

Today they conducted a Cardiac Echo test (ultrasound) on Will's heart in order to check the status of his arteries and to check one of his main valves. Babies born this early can tend to have problems with a valve in their heart and this test can help identify those issues and if heart surgery is required. This test is typically done because the Dr. has either noticed a heart murmur or because a baby has been on increased oxygen. In Will's case they have not necessarily heard a murmur but because of his increased need for Oxygen over the last several days, they want to check everything out. It appears we will get these test results back during the next several days. Tonight at the hospital Mommy, Daddy and Ethan had the chance to watch Will's nurse Heather take him out of his incubator and weigh and measure him. Mommy and Daddy even gave Will a kiss on the head. How is that for a memorable first kiss! Every Tuesday the nurses measure his length and the circumference of his head, so it was a great opportunity for us to watch them do this. And we also realized that it is a lot of work for the nurses to move him in and out of his little home. Today Will gained 40 grams and is at 680 grams (1lb. 8 oz.)

We request that you pray for Will's lungs, that he can continue to fight this infection and that the results of his heart ultrasound come back favorable.


Day 17 - Wednsday August 4, 2004
We are going to try and add several new pictures on Wednesday or Thursday of each week. We have been taking pictures of Will each Tuesday night so we can see how he changes every week. If you look closely at one of the new pictures, you can see a small green piece of paper. What the green paper represents is the actual size of a $1 dollar bill. This helps give you some perspective of his true size! (We did not want to put a real $1 dollar bill in his incubator as we all know how dirty money can be and considering how fragile Will's skin is, we did not want to take any chances.)

Today the Dr. informed us that his increased need for Oxygen may be a result of a small gap surrounding his ventilator (breathing tube). What this means is they will continue to watch him very closely and they may possibly have to re-intubate (insert) a new breathing tube. Although this procedure can be done relatively quickly, it is difficult to intubate a baby of his size. (They had a very hard time placing Will's tube on the day he was born.)

Tonight at the hospital Mommy and Daddy had the chance to meet Martha, the head nurse practitioner who was on duty the moment Will arrived. It was very interesting to listen to her explain the process that was in place the morning he came into the world. We learned that Martha has been doing this since 1974, so we truly were blessed to have her helping out that morning. We also learned that North Memorial is a level three neonatal nursery, which means they are the most advanced and sophisticated. That also means that if Will would have been born at one of several other hospitals in the Twin Cities, he would have been airlifted to a facility with a level three nursery. God has been watching out for us the whole time! Today Will did not gain or lose any weight. Thank you all for the continued prayers and support!


Day 18 - Thursday August 5, 2004
Today we received the preliminary results back from the Dr. regarding Will's blood infection and the initial results appear to be negative. This is wonderful news and shows another prayer has been answered! They also started him on an additional nebulizer with steroids to help his lungs develop. This nebulizer will run in conjunction with his other nebs that run every 4 hours and these are administered to him via his breathing tube. Dr. Camp also informed us that they do not want to intubate him unless it is completely necessary. Therefore, at the present time there are no plans for re-intubation. Will continues to fluctuate on the amount of pressure and oxygen he requires. He has been averaging 50%-60% over the last several days. Today Will was put on acid reflux medicine as well in order to help him digest and process Mommy's milk. Since he is being fed via a continuous pump, this is common as his tummy is always full.

Tonight at the hospital Mommy changed Will's diaper again and is starting to feel more and more comfortable doing so. Today Will hit a milestone on his weight: He gained 20 grams and that puts him up to 700 grams (1 lb. 9 oz) which is a tremendous increase from his birth weight of 540 grams.


Day 19 - Friday August 6, 2004
Today Mommy had the chance to visit with Will during the day, which was very nice. It appears the main concerns the Dr. has relates to the chronic lung disease issues that can possibly result when a baby is on a ventilator. Dr. Camp told Mommy this afternoon that she had no intentions to re-intubate even though Will continued to be all over the board on his oxygen.

This evening Mommy, Daddy and Ethan all went to the hospital to see how Will was doing. When we got to the elevator in the hospital, Will’s nurse for the day was leaving and we bumped into her. She informed us of some wonderful news: this afternoon Dr. Camp decided to re-intubate him with a larger tube and everything went extremely well! Will was adjusting very well and he was now lower on his pressure and on his oxygen. When we got up to his incubator, we noticed his Oxygen was down to 40%, the lowest it had been in nearly a week! We were also informed that the preliminary results of his Cardiac Echo test have come back favorable as well. Again, our prayers have been answered. Thank you all for praying so hard! Today has been one of the best days we have had thus far and we feel so blessed. Finally, tonight Will was extremely alert and Daddy and E had the chance to see Will’s eyes open. What a beautiful sight that was. Today Will gained 10 grams, so he now weighs 710 grams.


Day 20 - Saturday August 7, 2004
Today we visited Will in the early afternoon. He continues to stay at 4.4 ml of Mommy’s milk every hour or 106 ml per day (there are 355 ml in 12 oz. can of soda).

Thanks to everyone for all of the e-mails that you have sent to dexheimer21@yahoo.com. The support, well wishes and prayers are extremely amazing. In addition, the love that we receive from those heartfelt messages helps us smile every day. As we have mentioned before, we are saving each and every one of them for Will’s baby book (which is quickly becoming a ‘baby file’!) Today Will lost 10 grams, so he now weighs 700 grams.


Day 21 - Sunday August 8, 2004
We went to visit Will during the afternoon and when we got to the hospital, we had the opportunity to experience first hand some of the ups and downs the nurses mention he goes through. While we were there, he continued to bounce up and down with his oxygen and his pressure. In fact, while we were standing next to his incubator, he dropped his oxygen saturation level to as low as 40 (a non-smoking adult would have an oxygen saturation level in the high 90’s, however they want to keep him in the range of 80-92). After a few minutes the nurses adjusted his ventilator and he was back in the range he needed to be in.

We also hung two pictures in his incubator: a family picture and a picture of Will’s big brother Ethan. We want Will to feel as much at home as he possibly can. Diann the nurse also placed a sound machine in his incubator. The machine simulates Mommy’s heartbeat in order to relax him. The more he is calm and relaxed, the less moving he does and the less stressful it is on his precious little lungs. Again he opened his eyes and it sure is amazing to watch his heart rate and breathing rate increase when Mommy or Daddy talks to him. He sure knows who we are! Today Will gained 15 grams, so he now weighs 715 grams.


Day 22 - Monday August 9, 2004
Today Will received another blood transfusion. As the nurses need to draw blood on a regular basis, from time to time he needs to receive blood. His body is still so small that he can’t produce his blood fast enough, so he needed another transfusion. His continuous IV line was removed today since his antibiotics are no longer needed. He fought the infection, so we are very blessed with that. He sure knows how to stay strong. Dr. Camp talked to us today about the possible need of giving him an additional steroid shot for his lungs as Will continues to fluctuate on his oxygen. We will assess the need for steroids over the next several days.

Mommy, Daddy and Ethan all had the chance to visit Will tonight. Ethan was more interested in playing with the puzzle in the NICU waiting room than anything else. The nurse was taking Will’s temperature while we were there and he sure did not like it. He was squirming and doing his little silent cry again. Today Will gained 15 grams, so he now weighs 730 grams, or 1 lb. 10 oz.


Day 23 - Tuesday August 10, 2004
Today was one of the more difficult days thus far. Dr. Camp called Mommy and Daddy and said that Will was continuing to increase on his oxygen and ventilator pressure. She consulted with another NICU specialist regarding giving Will steroids for his lungs and the other doctor concurred. Dr. Camp explained to us the possibility of some significant short and long-term side effects due to the administration of the steroids. Mommy and Daddy had to make the very difficult decision (along with the guidance of Dr. Camp) to give Will the steroids in order to hopefully reduce his reliance on the respirator.

Tonight we went to visit Will in the hospital. It was only 58 degrees here today and it feels more like October than August (although it sure is getting Mommy and Daddy excited for the time to pass and for fall to arrive.) When we arrived at the NICU, the nurse informed us that one of Will’s blood protein tests came back this afternoon indicating another infection. So much for his IV line that was removed last night as he had a brand new IV placed into his foot. The official infection test results won’t come back for 24 hours so they were giving him three new antibiotics in an attempt to fight the potential infection. They have informed us all along of the ups and downs that we would be faced with, and today was definitely one of our most difficult days.

We request that you pray for Will to respond favorably to the steroid procedure and that it does not lead to any of the possible side effects. In addition, we request that you pray that he does not have another infection. Today Will did not gain any weight, so he continues to weigh 1 lb. 10 oz.


Day 24 - Wednesday August 11, 2004
Mommy had the chance to go and visit Will during the day today and she brought bagels for all of the nurses to thank them for taking such good care of our miracle. It was a great time for Mommy to visit as Carrie the nurse asked her if she would be interested in holding Will. At first Mommy was a bit reluctant, but she decided to go for it. What an amazing experience! Mommy had the opportunity to hold Will in her arms while she rocked in a rocking chair for almost 20 minutes! Will was resting on a small pillow in Mommy’s lap and they had all of the tubes still hooked up through his incubator. Mommy was so very excited to have such a touching opportunity with her newest little boy. The chance to hold and cradle Will is going to be an experience she will never forget. The nurses took some pictures, however our friend Steve is out of town and we are unable to load new pictures onto the web until he gets back early next week, so check the picture link then!

Tonight Mommy, Daddy and EJ all went to the hospital to visit Will. Heather was weighing him while we were there, so as always, it was great to be by Will’s bedside while she was weighing him. He did not gain any weight again today, so he continues to weigh 1 lb. 10 oz. (One of the side effects of his steroids is weight loss, so at least he is maintaining his weight and we are very pleased with that.) Thanks again for all the continued prayers.


Day 25 - Thursday August 12, 2004
Today was a significant day for Will. After reviewing Will’s improved progress on the ventilator, the Dr. made the decision around 5:00 PM to remove Will from the vent and try him on a small reserve oxygen system that would be placed in his nose. They wanted to see if Will could really breathe on his own! And we found out that he could, which is amazing for a baby at only 27 weeks gestation.

Tonight Mommy and Daddy went to visit Will and it was truly an amazing sight to see our handsome young man with no tubes in his throat. The sense of joy that rushed through us was remarkable. Our little boy was breathing on his own, only using the air flowing through his nose as a back up when he needed it. We had the chance for the first time to see his beautiful little face without all the tape to hold the tubes. We realized he actually has adorable chubby little chipmunk cheeks!

Around 8:30 PM, the lab sent back the results of his blood gas test and the amount of gas in his system was much higher than the limit they like to see. (A very common test that the nurses perform multiple times a day is to check the gas levels in Will’s blood. The lower his gasses, the better his system is processing the oxygen.) Almost at the same time that the results came back, Will began to have a hard time breathing on his own. At that point, the Nurse Practitioner looked at us and stated that Will needed to be intubated again and put back on the ventilator. Mommy and Daddy left the NICU while the nurses put Will back on the vent. Although we were sad, we also knew that Will could breathe on his own, even if it was only for 3 hours. The prayers that are surrounding Will are truly working. At the time we posted this, the nurse did not weigh Will yet, so we will update his weight this weekend.


Day 28 - Sunday August 15, 2004
Will had a very quiet weekend, which Mommy and Daddy liked. Over the last three days, he increased on his feedings to 5.0 ml every hour, our 120 ml per day. Will also gained weight during the weekend. He now weighs 760 grams, or 1 lb. 11 oz. Tomorrow morning Will is going to have his third head ultrasound to check for bleeding of the brain. We request that you pray for favorable head scan results.


Day 29 - Monday August 16, 2004
Well, it was 4 weeks ago today when our little miracle decided it was time to enter the world. It seems as though the time has gone extremely fast, yet it has also taken quite a long time to get to this milestone. Since the day he was born, we have received over 200 e-mail messages and numerous cards in the mail from people all over the world sending us prayers, encouragement and support. What an amazing support network we have.

Since July 19th, Will has come a very long way. He has increased his weight by over 41% and he has even attempted to breathe on his own power. We are so proud of our little boy. We have also come to realize during the last month how blessed we are to have such wonderful parents and siblings. They truly are helping us make it through this amazing journey. Finally, we have come to the realization as to why God has blessed us with such a well behaved first born. Ethan is such a remarkable young man and we are so lucky that we have that little angel as Will’s big brother.

Tonight Mommy and Daddy both went to the hospital to visit Will. We asked his nurses if they had received the results from his head ultrasound and they noted that they did not receive them yet. Hopefully tomorrow we will find out more of the details. Today Will gained 10 grams, so he now weighs 770 grams, or 1 lb. 11 oz.


Day 30 - Tuesday August 17, 2004
We continue to experience the “roller coaster” ride that this journey brings. Today was one of those very difficult days. Dr. Payne called and told us that Will appeared to have a level 2 hemorrhage in his brain. What this means is that Will apparently has some bleeding in different parts of his brain. Although this sounds like a bad thing, the Dr. reminded us that this issue is common with micro-preemies. (Will is considered a micro-preemie because of how early he was born.) The Dr. also walked us through the different issues that can result when bleeding occurs. They will continue to monitor this and he will now have additional head ultrasounds scheduled over the next several weeks. We request that you pray for Will and that the bleeding of his brain quickly subsides.

Today at the hospital Mommy and Daddy noticed that Will’s hair is getting darker. He looks more and more as if he has brown hair. We also posted new pictures, so please take a look at the pictures link. In one of them, he even has his eyes open. At the time we posted this, the nurse did not weigh Will yet, so we will update his weight tomorrow.


Day 31 - Wednesday August 18, 2004
Last night Will hit another milestone in his weight. Yesterday Will gained 30 grams, so that puts him up to 800 grams or 1 lb. 12 oz. In addition, today the Dr. informed us that they have increased his feedings up to 5.4 ml per hour or almost 130 ml of Mommy’s milk per day. Will is getting to the point where the Dr.’s would like him to continue to gain weight somewhere around 20 grams per day.

Tonight on the way up to the hospital, Mommy and Daddy noticed that kids were playing football and soccer at the park next to the hospital. That is a sign that fall is on the way, which makes us very excited as time is passing!!! Will continues to maintain his oxygen levels around 45% to 50%. Hopefully he can continue to gain strength and bring those percentages down over time. That would allow him to make another attempt at coming off the respirator. However, he is not quite yet ready at this time. Today Will gained another 20 grams, so he now weighs 820 grams, or 1 lb. 13 oz. Thank you all for the continued prayers and support.


Day 32 - Thursday August 19, 2004
Today at the hospital, the nurses informed Mommy and Daddy that things were relatively quiet with Will. He remained relatively stable on his breathing with fewer de-sats (times when he set off his alarm for not having enough oxygen saturation in his blood.) Other than needing another blood transfusion, Will had an uneventful day.

One of our friends sent us a bible passage a few days ago, and the more we read it, the more we get comfort in all that is happening around us. We wanted to share this passage as it is really helping us make it through this difficult time: “Being justified by faith, we have peace with God through our Lord Jesus Christ: by whom also we have access by faith into this grace wherein we stand, and rejoice in hope of the glory of God. And not only so, but we glory in tribulations also: knowing that tribulation worketh patience; and patience, experience; and experience, hope: and hope maketh not ashamed; because the love of God is shed abroad in our hearts by the Holy Ghost which is given unto us.” (Romans 5:1-5 KJV)

Today Will gained another 20 grams, so he now weighs 840 grams, or 1 lb. 14 oz. He is only two more ounces away from 2 lbs!!!! William has had an amazing run with his weight the last several days, so we are looking at that as a true positive. We request that you continue to pray for his breathing and his brain bleed.


Day 33 - Friday August 20, 2004
Again, the nurses informed Mommy and Daddy that things were relatively quiet with Will. They also informed us that Will’s blood gas came back lower, so they are thinking about possibly reducing his ventilator pressure from 15 to 14 during the night. The lower the pressure, the less work the machine is doing and the more work he is doing on his own. The nurses have informed us that it is common for babies to hit a plateau, where things remain relatively quiet. We are happy to be in that somewhat quiet time right now. Today Will gained another 15 grams, so he now weighs 855 grams, or 1 lb. 14 oz.


Day 34 - Saturday August 21, 2004
Several of our friends forwarded us a story that was on Yahoo! this week about the smallest baby ever born in the United States. She was born 17 years ago at only 9 oz. – and now she is going to be starting her senior year in high school in a few weeks. Hard to believe Will only weighed 10 more oz. than her!! We have also talked with several others who know of or have had very premature babies of their own. Hearing their stories of success truly gives us all hope. Thanks to all of you for sharing the heart warming stories. Finally, thanks to Pastor Peter and everyone at Lord of Life Church for the continuous support and prayers.

Today was another uneventful day for Will, which we have no problem with. Overnight they lowered his pressure to 14, but by the time we went to the hospital to visit, they had bumped him back up to 15 again. We also now know that Will “behaves” best when he is lying on his tummy and covered up under a blanket. Today Will gained another 15 grams, so he now weighs 870 grams, or 1 lb. 14 oz.


Day 35 - Sunday August 22, 2004
Today at the hospital we arrived to find a surprise – Will was off the ventilator and breathing on his own, only with the help of CPAP (small amounts of oxygen through his nose). Mommy and Daddy were so happy and thankful to see Will breathing on his own for the second time. Dr. Camp decided at noon that it was time to try him off the ventilator again. The amazing feeling that we had only a week ago was back. Our baby was breathing on his own and what a tremendous feeling this was.

However, in keeping with the continuous cycle of ups and downs, tonight at 5:30, we received a call from Dr. Camp again and she stated that he was struggling with his heart rate and breathing, and after 5.5 hours, Will needed to be re-intubated and put back on the ventilator. Yes, he was off the ventilator longer than the first time, however this time resulted in a bigger set back: Will had to be stopped from taking Mommy’s milk. As a result, Will was put back on an IV for his feedings. It is our hope that his feedings of milk will start again tomorrow. The nurses have told us that they will need to start him off at only 0.5 ml per hour and build him back up over time, so hopefully he will be back up to 5.4 ml per hour within the next several days again. Looking at the positive side of things, Will gained another 20 grams today, so he now weighs 890 grams, or 1 lb. 15 oz. We request that you pray for Will’s lungs and that he can regain strength from his strenuous day today.


Day 36 - Monday August 23, 2004
Today was another uneventful day for Will. He remained stable while back on the ventilator and he had no problems adjusting to his previous settings. Dr. Camp informed us that they stopped his feedings yesterday as some oxygen had infiltrated into his stomach while he was off the vent.

Tonight at the hospital, the nurses informed Mommy and Daddy that Will was back at full feedings, or 5.4 ml per hour. This was right where he left off on Sunday so we were very pleased that he was able to go right back to the milk level he was at yesterday. We also noticed that they lowered his pressure from 15 to 14, so this was another positive sign. Finally, the nurses lowered his breath per minute rate from 60 breaths per minute to 50. Again, this is another indication that he needs a little less support from the machine than he did before. Today Will did not gain any weight, so he continues to weigh 890 grams or l lb. 15 oz.


Day 37 - Tuesday August 24, 2004
Will had another uneventful day today. There were no changes on his vent settings and he continued at 5.4 ml per hour of Mommy’s milk. The nurse won't be weighing Will until later tonight so we will post his weight for the day tomorrow. One item to note, Will is currently at 890 grams. 907 grams represents 2 lbs., so he is very close to this milestone.


Day 38 - Wednesday August 25, 2004
The much anticipated weighing last night resulted in Will hitting another milestone; He gained 25 grams, thus putting him at 2 lbs. 0 oz.! Our precious little boy has made it to another achievement. We were so very happy to get this news. Today Dr. Camp increased his feedings to 5.6 ml per hour as he continues to tolerate Mommy’s milk. Dr. Camp also had to increase his pressure on the vent back to 15 as his blood gas test came back high.

Tonight at the hospital was one of those nights we will always remember. Mommy had the opportunity to give Will his first “bath” using small, warm wet towels and baby soap. After the bath, Daddy had the chance to hold his baby boy for the first time! What an amazing feeling to hold his second son for the very first time. It certainly made him realize how precious this little miracle really is. It also gave him some perspective of how small and light Will is as well. Tonight was a night that both Mommy and Daddy will remember forever.

Keeping with the roller coaster tradition, Heather the nurse weighed Will and today he lost 20 grams. As a result, he is back down to 895 grams, or 1 lb. 15 oz. However, considering the wonderful night we had, his small weight loss really feels like no big deal at all.


Day 39 - Thursday August 26, 2004
Will had another one of those uneventful days today. Dr. Camp is off, so we had the opportunity to talk with another Dr. from Children’s Hospital. Consistent with our previous experience with all of the NICU medical staff, she was very friendly and willing to ask if we had any new questions.

Tonight at the hospital Mommy and Daddy watched the nurses change William’s tape that was holding his breathing tube in place. They told us they had to fasten it down better so he would not ex-tubate (remove his breathing tube) himself. The nurse won't be weighing Will until later tonight so we will post his weight for the day tomorrow. As always, thanks to all of you who are keeping such close tabs on our precious gift and praying for him each and every day.


Day 40 - Friday August 27, 2004
This morning we called the nurse to find out more on Will’s weight from last night. We were pleased to hear that Will gained 25 grams, so he was back to 920 grams or 2 lb. 0 oz. It sure feels good to have him back over the 2 pound mark!

Each day we learn something new at the NICU. Today we were talking to Dr. Landrum and we asked her why it seems that Will is having a hard time getting off the ventilator. What she told us is that clinically, pre-mature Caucasian boys tend to have the hardest time with lung development and getting off a ventilator. They also told us that African American girls tend to do the best with early lung development. This made Mommy and Daddy feel better as his race and gender could be some of the reasons why it is taking him longer to get off the respirator. Today Will gained another 15 grams, so he now weighs 935 grams, or 2 lb. 1 oz.


Day 42 - Sunday August 29, 2004
Again, this morning we called to see how Will was doing. Pam the nurse noted that Will gained another 25 grams overnight, so he now weighs 960 grams, or 2 lb. 1 oz.

Today at the hospital, we had a chance to visit with Will. During the day, Dr. Landrum increased his feedings of Mommy’s milk to 6.0 ml per hour, so that is another positive sign that he continues to tolerate his feedings. We also talked to the nurses about what was going on last night when we called to check on Will. He needed a significant amount of additional oxygen (75%) for a few hours last night, but no one was sure why. His saturation levels were high and he appeared to be comfortable. As it is difficult for the medical staff to pinpoint any issues, Will has a chest X-Ray scheduled for tomorrow morning to see if he has additional fluid in his lungs. Other than the higher oxygen during the night, Will has had a relatively uneventful weekend. Today Will gained another 25 grams, so he now weighs 985 grams, or 2 lb. 2 oz. He has almost gained one full pound!


Day 43 - Monday August 30, 2004
Hard to believe it was six weeks ago that our lives changed in such a good way. Will continues to show how strong he is considering that today Dr. Camp told us he appears to have fluid in his right lung. They will continue to X-Ray and monitor the situation. In addition, the nurses can only have him rest in certain positions in order to not allow him to lay directly on his right lung as that can have an impact on how well he can breathe. The Dr.’s are also continuing to assess if he will need another round of steroids before trying him off the ventilator again.

Tonight at the hospital, Heather weighed Will and shared with Mommy and Daddy some very good news: Will gained another 30 grams, so he now weighs 1,015 grams, or 2 lb. 3 oz. He has now gained one full pound since the day he was born. Furthermore, Will is now part of an elite club called the “Kilo Club”. This means that he now weighs more than 1,000 grams or 1 kilogram! We request that you continue to pray for Will’s lungs and that he can build up the strength to breathe on his own again soon.


Day 44 - Tuesday August 31, 2004
In order to treat his lungs, the nurses have increased Will’s nebulizer treatments to every three hours. The nurses add these warm mist treatments through his breathing tube in hopes that the vapor will help loosen up his lungs.

Today Mommy and Daddy received a call from Dr. Camp with some very surprising news: Will decided to ex-tubate himself around 1:30 this afternoon. For whatever reason, Will felt it was time to take out his breathing tube, so he moved around and dislodged it himself! Needless to say, he is once again breathing on his own with only CPAP assisting him with supplemental oxygen. At first Will had a difficult time breathing on his own, but over time he did get used to it. One of the nurses explained to us that when a baby immediately goes onto CPAP, it is like trying to breathe while sticking your head out an open window of a moving car. One can definitely imagine how difficult a task that would be!

Tonight at the hospital Dr. Camp informed us that this ex-tubation was not planned. At that point, Mommy and Daddy reminded her that most of the last 45 days have not been “planned” and we are beginning to expect the unexpected. Dr. Camp also informed us that as soon as he went onto CPAP, she introduced another dose of steroids in order to give his lungs a “jump start”. These steroids will continue over the next several days. As Will had a very strenuous day today, Heather informed us she is not going to weigh him until the middle of the night in hopes of letting him rest and get used to breathing on his own. Therefore, we will update his weight tomorrow. One last item to note: Will is now 34 centimeters in length, or 13 ¼ inches. We request that you pray for Will’s lungs and that he can continue to breathe on his own.


Day 45 - Wednesday September 1, 2004
This morning we called the NICU to see how Will was doing. We found out that Will was still on CPAP, however he had some difficult moments during the night with his breathing. Pam his nurse informed us that he had several “Brady Cardia” spells, which means that his heart rate dropped well below 100 beats per minute. We have been present when these spells occur and it can be extremely frightening as the nurses need to physically stimulate him and try to get his heart rate back up. She also informed us that Will lost 35 grams yesterday, so that puts his weight back to 980 grams, or 2 lbs. 2 oz.

Today we stopped up to see Will and what a wonderful sight it was to see him breathing on his own. Mommy could not have asked for a better present on her Birthday! He had been doing it for over a day now and Mommy and Daddy were very happy to see him so strong. Pam informed us that he was having a wonderful afternoon and his spells were decreasing as well. In addition his blood gas test came back very favorable, so he was processing the oxygen acceptably.

Tonight we called Heather to get an update and she informed us that at 7:30 PM they had to re-intubate Will and put him back on the ventilator. Evidently he had multiple Brady spells that lasted nearly 10 minutes and he was having a very difficult time breathing on his own. (Thank goodness we were not there to witness this.) Looking at the positive side of things, at least he had breathed on his own for over 30 hours. She also informed us that a blood culture came back that he possibly has an infection, so he is also back on an IV and they are treating him with antibiotics. They also had to put in a smaller breathing tube than before, so they will be taking X-Rays to check for possible airway obstruction.

It sure is amazing how in a matter of hours we can be at the highest of highs and then brought back down to the reality of what is happening around us. Heather said she is not going to weigh him again until early tomorrow morning as he does not need the increased stimulation right now. What he needs to do now is rest and try to regain some of the energy he utilized the last several days as he was trying so hard to breathe with his own little lungs. We request that you pray for Will to be calm and regain his strength.


Day 46 - Thursday September 2, 2004
This morning we found out that Will lost another 10 grams overnight, so that puts him at 970 grams, or 2 lbs. 2 oz. Today was one of the most difficult days that we have been through thus far on this amazing journey. Dr. Camp called Mommy and Daddy and informed us that it is extremely likely that Will has a significant airway obstruction. She made this determination after reviewing how abruptly he came off the CPAP and because the nurses had a difficult time putting in his breathing tube last night. As a result, Will needs to see an Ear, Nose and Throat (ENT) specialist in order to determine the severity of his obstruction.

Will has been scheduled to undergo a bronchoscopy this Saturday morning at 8:00 AM. An ENT specialist will perform this procedure in an operating room at North Memorial Hospital and it will require Will to be put under anesthesia. The specialist will go into Will’s airway with a camera and get a much closer look to see if he has a severe airway obstruction, scarring of his breathing tube or if he was born with a small airway. Depending on what the Dr. finds, there is a high chance that Will may need to have a tracheotomy put into his throat. This is a surgical incision of the windpipe to make an artificial opening for breathing. Mommy and Daddy talked to the ENT specialist tonight and he said Will is currently too small for a tracheotomy and the only way they would perform the procedure this weekend is if he finds extreme obstruction during the observation. He told us that typically babies need to weigh at least 2 lbs. 8 oz. before they can perform the surgery. Mommy and Daddy are definitely nervous with all of this news, but we are trying to remain as optimistic as possible through this continuing roller coaster of emotions.

Today Will gained 35 grams, so he now weighs 1,005 grams or 2 lbs. 3 oz. We request that you pray for Will’s airway and that he continues to get rest for his upcoming procedure Saturday morning.


Day 47 - Friday September 3, 2004
Today Will had a relatively uneventful day, which considering his big procedure tomorrow morning, that is a very good thing. Tonight at the hospital Mommy and Daddy had the chance to see Will extremely alert and wide awake. In fact, it was the most wide open that we have seen his eyes thus far. When Sharon had Will out of the isolette to weigh him, we saw and actually heard Will sneeze for the first time. It was the quietest sneeze we ever heard but it sure was very precious!

We would like to sincerely thank Ernest Perez and his team at Globalscape in Texas for the generous donation of the FTP software for us to continue loading our daily updates to Will’s website. Ernest and I had several conversations this week and he and his team wanted to help us out so they donated a free license of their software for us. It sure is remarkable how people we never even met before are willing to help us out during this time.

Today Will gained 20 grams, so he now weighs 1,025 grams or 2 lbs. 4 oz. We request that you pray for Will’s procedure tomorrow morning and that God will keep his loving hand on him while he undergoes his bronchoscopy. We also request that you pray that he has favorable results.


Day 48 - Saturday September 4, 2004
This morning Mommy and Daddy arrived at the hospital very early in order to visit with Will before his procedure. He was very relaxed and we both had the chance to put our hands on his tummy for a few minutes, so that made us feel at ease. We also met with Dr. Sumak, the ENT specialist who was going to perform Will’s bronchoscopy. It turned out that he was the same Dr. who placed tubes in Ethan’s ears over a year ago! What are the chances of that? When they were ready, Mommy and Daddy walked with Will and his NICU nurses as they wheeled him down to the operating room. Watching him go into the operating room was a very hard thing to see.

While we were waiting for Will to get back upstairs, we bumped in to Dr. Sarkenen, who delivered Will. She visited with Mommy and Daddy during the whole procedure, which was a wonderful way for us to relax and not think about everything that was happening. She is truly an amazing person for taking time out of her busy schedule to be with us and help set our minds at ease.

Around 9:00 AM Dr. Camp and Dr. Sumak came back upstairs and discussed the findings of the procedure with us. They first noted that Will was doing just fine and he was having no trouble recovering from the anesthesia. They also mentioned that he does appear to have some swelling in the lower area of his windpipe. However, they noted that his airway obstruction is not currently so severe that they would need to insert a tracheotomy today. They will continue to monitor him very closely and chances are high that he will need to undergo this same procedure when he is around 1,400 grams. It is truly amazing how the Lord listens to all of the prayers.

Dr. Camp also informed us that the next several weeks are critical for Will to continue to gain weight and strength in order to breathe on his own. His chronic lung disease is worsening and it is getting more and more important that Will breathes off the vent in the near future in order to prevent any additional damage to his lungs. Dr. Camp stated, however, that she is not necessarily comfortable with Will coming off the ventilator quite yet as his airway needs to get bigger and less swollen first. Today Will lost 15 grams, so he now weighs 1,010 grams or 2 lbs. 3 oz. Once again, thanks to all of you for your continued support and prayers for all of us.


Day 49 - Sunday September 5, 2004
We are learning that during the next several days to weeks the Dr.’s will begin to take a closer look at Will’s eyes. It is our understanding that this is a common practice for all micro-preemies. Evidently when a baby is on prolonged oxygen support, there is a possibility that the oxygen can have some negative effects on the eyes. Will has already had one eye exam, but the only results we received from that test are that his eyes appear to be premature.

Today Will had another uneventful day. His oxygen pressure continues to be set at 15 and his oxygen levels have been in the 40’s. Today Will had his biggest weight gain to date; He gained 60 grams, so he now weighs 1,070 grams or 2 lbs. 5 oz. As Will was born at 540 grams, once he is over 1,080 grams he will have doubled his overall weight. He is almost there! We are continuously praying and remaining hopeful that as Will grows in size and strength that he will be able to successfully come off the ventilator.


Day 50 - Monday September 6, 2004
Hard to believe that today is day 50. Today at the hospital Mommy and Daddy had the chance to see Will resting very peacefully. We noticed that Will looked bigger, primarily as he had a larger diaper on. Ann his nurse informed us that overnight Will graduated to the next size diaper, so that means he is growing. Will’s feedings of Mommy’s milk are also up to 6.6 ml per hour, so the fact that he continues to tolerate his feedings are a good thing. It was also nice to see that his IV was no longer in his little hand. Dr. Camp informed us that tomorrow Will is going to have an X-Ray to take another look at his lungs to make sure he does not have any fluid build-up.

Today Will gained 35 grams, so he now weighs 1,105 grams or 2 lbs. 7 oz. He has officially doubled his weight from the day he was born! We request that you pray for Will’s lungs to continue to gain strength.


Day 51 - Tuesday September 7, 2004
Today was another relatively quiet day for Will. The Dr. is increasing his feedings by 0.1 ml every 8 hours, or 0.3 ml per day. He continues to remain stable on his oxygen settings as well. Today Will lost 10 grams, so he now weighs 1,095 grams or 2 lbs. 6 oz. We definitely like these quiet days.


Day 52 - Wednesday September 8, 2004
Will had his second eye exam today and the eye specialist noted that he currently has pre-mature eyes. These findings are consistent with his last eye exam and as of right now, it is too early to tell if he has any damage to his eyes from the oxygen. Dr. Ferrara also increased Will’s feedings to 7.0 ml every hour. Today Will gained 45 grams, so he now weighs 1,140 grams or 2 lbs. 8 oz. The Lord is answering the endless prayers for Will to continue to gain weight and strength.

We would like to offer a heartfelt thank you to all of our family, friends and co-workers who have been so generous during the last several months. Thank you all for your caring thoughtfulness! We are finding out during this time how lucky we are to have such a wonderful support network.


Day 53 - Thursday September 9, 2004
Today was another good day for Will. He remained relatively stable on his oxygen and the Dr. increased his feedings to 7.2 ml every hour.

Tonight at the hospital both Mommy and Daddy had the chance to hold their precious miracle for the second time. Like the first time, it was just as wonderful to hold him in our arms. We did notice that he is getting bigger and his weight gain was very evident when we had him in our arms. We also noticed that he has a small red “stork bite” on his right eye. A “stork bite” is a light reddish pigment that typically goes away over time. Ethan was also born with a “stork bite” on his right eye, so it was very coincidental that both our boys have had the same feature. Today Will gained 40 grams, so he now weighs 1,180 grams or 2 lbs. 9 oz.


Day 54 - Friday September 10, 2004
Will had a relatively stable day today. The Dr. decreased the pressure on his vent setting to 14. In addition, the Dr. increased his feedings of Mommy’s milk to 7.4 ml per hour. As long as he continues to gain weight, his feedings will increase proportionately. Today Will gained 55 grams, so he now weighs 1,235 grams or 2 lbs. 11 oz. It is amazing how fast he is plowing through 2 pounds!


Day 55 - Saturday September 11, 2004
This morning Mommy and Daddy received a call from Dr. Ferrara and he notified us that Will needed to be ex-tubated since his breathing tube was clogged with fluid. Thus he was put onto CPAP again and his first dosage of Decadron Steroids were started as well. We had our fingers crossed and tried to remain optimistic that this would possibly be “the time” where he would be off for good, although we knew Will may go back on the vent because the Dr.’s were not planning on trying him off the vent until he hit 1,400 grams in weight. So here we go again, right?

Well, about a half hour later we received another call from Dr. Ferrara and he noted that Will’s blood gasses came back extremely high, so he decided that Will needed to be in-tubated. The good news however was that he was able to insert the tube relatively easily using a size 3.0 tube, which is the same size tube that he had in earlier this morning. The Dr. also mentioned to us that he was able to insert the new tube with very few problems. That is a good sign that his airway obstruction is possibly diminishing. We request that you pray for his lungs and that he continues to gain weight and strength. Today Will did not gain or lose any weight, so he remains at 1,235 grams or 2 lbs. 11 oz.



Day 56 - Sunday September 12, 2004
Today was another great day from Mommy and Daddy. This morning at the hospital Deb asked if we would like to hold Will again. That sure was a tough question. After thinking about it for all of about one second, we both said “we sure would”! In order to keep Will warm while he was out of his isolette, Deb decided to dress Will in a very small ‘onesie’. That was the first time we ever saw Will in an outfit. He looked so adorable. Deb also mentioned that preemies used to wear Cabbage Patch Doll clothes, but they now dress the NICU babies in tiny tiny preemie clothes.

Both Mommy and Daddy had the chance to hold Will again today. It was wonderful because he was very alert and looking all around. In fact, Mommy even had the chance to rock Will to sleep. Today was another one of those days that we will remember for quite a long time. We also noticed that Will’s hair continues to get darker brown, but he still has some blonde streaks. Mommy and Daddy tease the nurses and ask them if they frost his hair.

Dr. Ferrara increased Will’s feedings to 7.6 ml per hour and he is planning to increase his feedings again tonight. Moreover, if all goes well they are planning tonight to reduce his vent pressure down to 13 at midnight. Today Will lost 10 grams, so he weighs 1,225 grams or 2 lbs. 11 oz. (Note: This afternoon Will had a 48 gram diaper, so the nurses were not surprised that he did not gain weight today. Yes, the nurses have to weigh each dirty diaper he has. In fact every hour they record and chart all of his vital signs, vent settings, temperature and other stats so they can continuously monitor his progress.)


Day 57 - Monday September 13, 2004
Will had another relatively uneventful day today. They kept his feedings constant at 7.8 ml per hour. Tonight at the hospital Mommy, Daddy and Ethan had the chance to visit Will and he looked great. Today Will gained 25 grams, so he weighs 1,250 grams or 2 lbs. 12 oz. He is getting closer to the magic number of 1,400 grams. Thanks to all of you for the endless support and prayers.


Day 58 - Tuesday September 14, 2004
This morning Will received another blood transfusion since his blood count was getting low. When we saw Will tonight he still had his IV site in his right hand just in case they need to give him more blood tomorrow.

Will continues to grow as well. He is now 39 cm (15 ¼ inches) long. He also had his biggest weight gain thus far. He gained 110 grams today so he now weighs 2 lbs. 15 oz. The nurses did mention that typically they do not like to see that large of a weight gain over the course of one day as that could possibly mean that he is retaining more fluids. They also mentioned that the time of night he is weighed can have a considerable impact on his overall weight. For example, he could have a significant dirty diaper right after they weigh him and that can have an impact on what is recorded as his actual weight gain. Nevertheless, he is very, very close to 3 lbs.!


Day 59 - Wednesday September 15, 2004
Today Dr. Bendel-Stenzel informed us that she is planning to start Will on the lung steroids Decadron sometime this weekend. This is the steroid that could have some significant side effects that Will has been on several times before. Will’s pressure on the ventilator was at 14 today and his oxygen needs have been somewhat higher lately (in the higer 50's).

Today Will gained 20 grams, so he now weighs 1,380 grams or 3 lbs. 0 oz. He has hit another milestone! He is now a 3 pound baby! We request that you pray for Will to continue to gain strength over the next several days as they prepare to take him off the respirator.


Day 60 - Thursday September 16, 2004
Hard to believe today is day 60. Where is the time going? The nurses gave Will his first three vaccinations today. These include the flu and polio vaccines. We also learned that the nurses gave him Tylenol along with the shots in order to ease some of the pain for him.

As of right now the current plan is to give Will Decadron on Sunday and make an extubation attempt on Monday. We continue to remain optimistic that he will succeed when they take him off the ventilator. Today Will gained 25 grams, so he now weighs 1,405 grams or 3 lbs. 1 oz.


Day 61 - Friday September 17, 2004
Today Will received his final two vaccinations along with a few more doses of Tylenol. The nurses also increased his feedings to 8.4 ml per hour. Today Will gained 25 grams, so he now weighs 1,430 grams or 3 lbs. 2 oz.


Day 62 - Saturday September 18, 2004
The Dr. increased Will’s feedings to 9.0 ml per hour today. His oxygen continues to remain in the low to mid 50’s. Each time we go visit Will in the hospital he is becoming more awake and alert as to what is happening around him. We also had more chances to hold him again and the nurses encourage us to try and hold him several times a week if possible.

He continues to rest, which is exactly what he needs in preparation for the significant upcoming week. It is very important that he maintains and builds his strength since coming off the ventilator this week will require him to be ready and strong. Today Will had another significant weight gain – he gained 100 grams, so he now weighs 1,530 grams or 3 lbs. 6 oz. We request that you pray for God to prepare Will’s body for the upcoming extubation.


Day 63 - Sunday September 19, 2004
Will had a somewhat quiet day today, which was what he needed to have. Tomorrow is going to be one of the busiest and most important days yet in this journey. There are two pretty imperative events that are scheduled. He is going to have another head ultrasound tomorrow. This will give the radiologist a chance to assess if Will has any bleeding in his brain. Dr. Camp is also planning on extubating Will tomorrow morning and taking him off the ventilator. It is very important that Will succeeds and breathes on his own as he needs to be able to do this.

The nurses have informed us that typically the first 72 hours that a baby is on CPAP are the most crucial and yet the most difficult for micro-preemies to get accustomed to. Today Will lost 25 grams, so he now weighs 1,505 grams or 3 lbs. 5 oz. We request that you pray for Will’s lungs, his strength, that we receive favorable results from his head ultrasound and that he will succeed and breathe on his own when taken off the ventilator.


Day 64 - Monday September 20, 2004
As planned, this morning at 8:15 AM Dr. Camp extubated Will and removed his breathing tube. He had a fairly stable day considering he is now breathing on his own with only the help of CPAP. Tonight at the hospital Mommy and Daddy had another chance to see their precious miracle breathing on his own. What an unbelievable feeling to see Will’s chubby little cheeks once again. He only had two “reportable” episodes today (which means he had a Brady Cardia or his heart rate dropped below 100 bpm) and the nurses had to physically stimulate him to bring up his heart rate.

In order to maintain as much stability as possible, the nurses try to limit the number of times they need to go into his isolette to disrupt Will. Today Will did not gain or lose any weight so he stays at 1,505 grams or 3 lbs. 5 oz. We appreciate all the generous prayers for Will to continue breathing on his own.


Day 65 - Tuesday September 21, 2004
The last two days have brought back vivid memories of what it was like for us when Will first arrived into this world. With Will on CPAP, it has been a reminder for Mommy and Daddy of what it is like to take each day hour by hour, just as we had to do when he was born. We continue to remain guardedly optimistic that all will go well with Will being off the vent. It was very nice to get over the 30-hour hump today at 2:00 PM. (The last time Will was taken off the ventilator he made it 30 hours and then he had to be placed back on the respirator.)

Dr. Camp informed us today that he is off to a good start and that the steroids appear to be helping Will breathe. The only concern she raised is that she is not sure how his chronic lung disease may possibly impact his breathing. We also learned that when the nurses give Will a nebulizer treatment, he is actually taken off CPAP and he is completely breathing on his own.

During the afternoon we talked to Will’s nurse Diann and she informed us that he was not happy at all. He had six reportable episodes during the afternoon and for whatever reason he was having a very difficult time breathing. She said he was moving around quite a bit and that he had not been “behaving” most of the afternoon.

Tonight at the hospital we had the wonderful opportunity to watch Heather take Will out of his isolette and weigh him. What a beautiful sight to see his face without any tubes. He is so adorable. We also heard him cry for the first time. Now that he does not have a breathing tube in, we are able to hear sounds when he cries. It was music to our ears. Today Will lost 35 grams, so he now weighs 1,470 grams or 3 lbs. 3 oz. The fact that he lost weight is not at all surprising as Decadron steroids typically result in weight loss. Moreover, he has been working very hard all day trying to breathe and this usually results in the burning of many calories. Now it’s time for us to get some sleep as this has been a somewhat trying day on the nerves.


Day 66 - Wednesday September 22, 2004
Today Dr. Camp informed us that Will had a relatively stable morning. The number of reportable episodes had decreased, which is a positive thing. Today was another milestone for Will from a feeding perspective. Going forward the nurses will give him his feedings in a larger dose every three hours as opposed to feeding him on a continuous basis. This means they are trying to put Will onto a feeding schedule and this routine will help prepare him for what it will be like to be fed only at certain times of the day. She also informed us that his head ultrasound results came back favorable and that it does not appear that he has any bleeding of the brain. We are very blessed to have received these favorable results!

Tonight at the hospital Mommy and Daddy talked to Martha the Nurse Practitioner. She informed us about the results from Will’s eye exam that took place earlier today. Currently his eyes are showing that he as some slight retina issues, which Martha classified as Level 1 out of a total of 4 levels. This means the Dr.’s must watch his eyes closely over the next several weeks and monitor if his retina problems mitigate or get worse. We also were there when Jenny weighed Will. Today he lost 20 grams, so he now weighs 1,450 grams or 3 lbs. 3 oz . We had the opportunity to take some pictures of Will, so look for those on our site during the next several days. Thank you all for the encouragement, support and prayers during the last several days. We greatly appreciate it!


Day 67 - Thursday September 23, 2004
Another day has passed, and Will is still on CPAP. He was a bit rambunctious during the day today, however. When he is not happy about something, he evidently lets the nurses know it by increasing his heart rate over 200 bpm or dropping it below 100 bpm, thus setting off the alarms on his monitor. The nurses have found that gently patting his back and behind tends to help calm him down, so they had to do that quite a bit today. Today he lost 15 grams, so he now weighs 1,435 grams or 3 lbs. 2 oz. As he gets accustomed to the CPAP and his new bolus (intermittent) feedings, he will once again begin to put the weight back on.


Day 68 - Friday September 24, 2004
This morning Dr. Camp called and gave us an update on Will. She mentioned that Will’s blood gasses were starting to get higher, which means his body is not processing oxygen in an efficient manner. Therefore they must continue to closely watch his blood gasses over the next several days. The last several times that Will was on CPAP he needed to go back onto the ventilator as his blood gasses were getting too high.

Dr. Camp also told us that Will has significant bronchopulmonary dysplasia or chronic lung disease (CLD). We have read that as many as 70% to 75% of babies who are born before 26 weeks of gestational age develop CLD because their lungs have not developed completely. Another common cause of CLD is inflammation of the lung tissue caused by the continuous air pressure from the ventilator. The longer a baby is on a ventilator, the more severe and chronic their lung disease becomes. What this means is that it is going to take him a while to be able to breathe completely on his own. Consequently, it is extremely important that Will maintains his strength and focuses on getting accustomed to breathing on his own. Dr. Camp also mentioned that the likelihood is very high that when Will comes home he may need to have supplementary oxygen in order to assist with his breathing. Evidently this is common with babies that have chronic lung issues.

Mommy and Daddy are trying to maintain an optimistic attitude on his breathing and that he continues to make progress on the CPAP. Today Will gained 50 grams, so he now weighs 1,485 grams or 3 lbs. 4 oz. We ask you to pray that Will’s blood gasses come back favorable tomorrow morning and that he rests and regains his strength.


Day 69 - Saturday September 25, 2004
Will had another good day on CPAP today. This morning his blood gasses came back slightly lower, so we were pleased with those results. Today at the hospital Mommy had the opportunity to hold Will, which was the first time she held him while not being on the ventilator. (Daddy would have held him but he is recovering from a cold and did not want to take any chances.) It was another milestone day as it was so nice to see him off the respirator and out of his isolette. Today Will gained 65 grams, so he now weighs 1,550 grams or 3 lbs. 6 oz. We are so gracious for all of the prayers each of you are sending our way.


Day 70 - Sunday September 26, 2004
It is incredibly hard to believe that 70 days have passed since our miracle arrived. And as we are finding out with this voyage, every day brings a new test, treatment or diagnosis. As we mentioned earlier this week, the eye specialist diagnosed Will with Stage 1 of Retinopathy of Prematurity (ROP). ROP is an eye disease that results from abnormal development of the retina. Infants weighing less than 2 lbs. 3 oz. at birth and who are born at 23 to 28 weeks gestational age have a particularly high chance of developing ROP. ROP is a progressive disease and that is why Will’s Dr.’s must watch him very closely over the next several weeks. If his Retinopathy of Prematurity continues to get increasingly worse, it could lead to possible laser eye surgery to correct the retina problems. We are all praying and keeping our fingers crossed that his ROP reverses.

Today was another good day for Will. He is tolerating his bolus feedings and we can still see him growing before our very eyes. Today at the hospital Mommy had the chance to hold Will again. We also had our first official family picture taken with all four of us, so that was magnificent. Today Will gained 10 grams, so he now weighs 1,560 grams or 3 lbs. 7 oz.


Day 71 - Monday September 27, 2004
As of this morning, Will has been off the ventilator for a week and counting. It sure feels nice to know that he has made it this far. Today Dr. Bendel-Stenzel increased Will’s feedings to 30 ml (1 oz.) every three hours. She also made another relatively significant change; She is having the nurses take Will completely off CPAP whenever they are doing his cares. By this evening, he was completely off CPAP twice for nearly an hour each time. This is another superb step for Will.

Tonight at the hospital Mommy and Daddy had the chance to see Will off CPAP for nearly a half hour. We also saw Will sucking on his pacifier. That seems to relax him more and more lately. Today Will gained 25 grams, so he now weighs 1,585 grams or 3 lbs. 7 oz.


Day 72 - Tuesday September 28, 2004
Today was a quiet day for Will. He made it off the CPAP three times for 45 minutes each time. He was actually off the CPAP for a shorter amount of time than yesterday, but per Amy his nurse, this is somewhat common as he was probably tired from coming off the CPAP several times yesterday.

Today Will had another relatively large weight increase – he gained 85 grams, so he now weighs 1,670 grams or 3 lbs. 11 oz. Hopefully some of this gain relates to fluid retention, but the Dr.’s will watch him closely to make sure he is passing the proper amount of fluids. We ask you to pray for Will’s eye exam tomorrow to show signs that he is regressing from his Stage 1 ROP.


Day 73 - Wednesday September 29, 2004
Although the Dr.’s have not told us of when Will may be coming home, they are beginning to talk more about what it will be like when he does come home. For example, they are explaining to us that Will may need to come home on supplemental oxygen. They also have mentioned that he will probably come home with a monitor to notify us of his apnea spells. We are also learning that when he does come home, we are going to have to be very cautious during the winter months as it will be flu and RSV season. Both the flu and RSV can be very harmful to micro-preemies that have a premature immune system. Nonetheless, Mommy and Daddy are at least happy to be talking about what it may possibly be like when Will comes home, whenever that may be.

Tonight at the hospital Mommy and Daddy bumped into one of Mommy’s friends from high school who had a baby today. When her friend’s husband (who we have never met) came over to look at Will he said “Hey, it’s the internet baby! He looks so much bigger in person. He is pretty famous since so many people have seen pictures of him and read about him on the web…” We talk to people each and every day who have been following this journey so closely on Will’s web site. It certainly makes us feel fantastic that so many of you have been with us since Monday, July 19th. Thank you!

Tonight the Dr. explained to us that Will’s eye exam today showed that he remained at Stage 1 of ROP. We look at these results as positive since he did not advance to Stage 2. He will have another eye exam in a week, so hopefully at that exam they will find that his ROP is regressing. Today Will gained 25 grams, so he now weighs 1,695 grams or 3 lbs. 11 oz. If you have not done so yet, please take a look at our newly updated photos on the pictures link!


Day 74 - Thursday September 30, 2004
Today the Dr. increased Will’s feedings to 32 ml every 3 hours. That is a good sign that he continues to tolerate his feedings. Tonight at the hospital Mommy had the opportunity to give Will a bath using little warm wet washcloths. This was another first for her, so that was wonderful. Today Will gained 25 grams, so he now weighs 1,720 grams or 3 lbs. 12 oz. To put his current weight into perspective, he has well over tripled in size from his birth weight!


Day 75 - Friday October 1, 2004
Whew! Finally October is here! Back in July, October seemed like it would never come. But here we are. We made it this far and our family is so much stronger because of this remarkable experience.

Tonight at the hospital we all had the chance to see Will off CPAP for a while. He was also very alert and awake. Today Will gained 10 grams, so he now weighs 1,730 grams or 3 lbs. 13 oz. Thank you for the ongoing prayers for Will to “Livestrong”.


Day 76 - Saturday October 2, 2004
Today was a quiet day for Will. No major changes and nothing really new to report. Mommy and Daddy like these days! Today Will gained 50 grams, so he now weighs 1,780 grams or 3 lbs. 14 oz.


Day 77 - Sunday October 3, 2004
This morning Dr. Bendel-Stenzel made a very big modification to Will’s schedule. She made the change to introduce one bottle a day into Will’s feeding schedule. Mommy and Daddy were very excited to hear this. The Dr. mentioned she did not know how he would respond but they wanted to find out how he would do considering he is now at 36 weeks adjusted (this would be his gestational age in utero. And yes, that’s right, Mommy’s due date of November 6th is still over a month away!!)

When we got up to the hospital today, Mommy had the opportunity to feed Will his first bottle while Ethan and Daddy looked on. Another wonderful first for all of us! Will actually did exceptionally well; He ate 20 ml right from the bottle, so everyone in the NICU was very happy about that. Keri his nurse then gave Will the rest of his milk via his feeding tube, which is what they will do if Will does not eat everything in his bottle.

Finally, Will hit another major milestone today in the weight department. Today Will gained 35 grams, so he now weighs 1,815 grams or 4 lbs. 0 oz. Just like with two pounds, he cruised right through three pounds as well. Thanks for the prayers for Will to gain weight at a reasonable pace and to continue breathing on his own each day.


Day 78 - Monday October 4, 2004
360 and counting. That is the number of e-mails that we have received since July 19th. These messages, which we will be saving as part of Will’s baby book, have been ones of hope, support and encouragement. Thanks to all of you for sending these notes our way. We look forward to the day when we can share these with Will.

Our visit to the NICU was very short lived tonight. Ethan was not feeling well just as we got there, so we had to head home. Thus, Heather had the chance to give Will his bottle tonight. Will only ate 11 ml, so he took a few steps back from yesterday’s bottle-feeding.

Given that we have not updated his length in quite some time, we wanted to take the opportunity to do so. Will is now 39 cm, or 15 ½ inches long. Today Will gained 50 grams, so he now weighs 1,865 grams or 4 lbs. 1 oz.


Day 79 - Tuesday October 5, 2004
Will had another good day today. We were talking to Will’s nurse Mary Beth and she mentioned that Dr. Couser was considering stopping Will’s bottle feedings because he felt that Will was possibly too little right now for bottle feedings. Mary Beth recommended that we continue to try over the next several days just to let Will have a few chances at it in hopes that over time he will increase the amount he takes.

Tonight at the hospital Will only took 12 ml from the bottle. He appeared to get very tired while he was eating. In fact, Heather even mentioned that she has never seen a baby on CPAP being fed a bottle. So, we will have to wait and see what the next several days bring. Some of the key things that have gotten us through the last several months are patience and prayer, so once again we will engage in both of those virtues. Today Will gained 5 grams, so he now weighs 1,870 grams or 4 lbs. 2 oz.


Day 80 - Wednesday October 6, 2004
This morning Dr. Couser called us and told us that he was going to stop Will’s bottle feedings for the time being. He felt it was more important for Will to save all his energy for concentrating on his breathing and trying to get off CPAP. We were not necessarily surprised by the news as we were preparing ourselves that this could possibly happen. Dr. Couser did mention that it really would not impact Will in any way as he would still be getting his nutrition from the feeding tube.

Tonight at the hospital Daddy had the opportunity to hold Will in a Kangaroo carry. This means Daddy had his shirt off while he held Will, who was only wearing his diaper. This skin-on-skin contact was the first time this happened since Will was born, so tonight was another amazing experience. Today Will gained 60 grams, so he now weighs 1,930 grams or 4 lbs. 4 oz.


Day 81 - Thursday October 7, 2004
Today was a quiet day for William. The only major change to his schedule was that the nurses are now trying to take him off CPAP every two hours. Accordingly, Will now is on CPAP for two hours and then he is off completely for two hours. This is the next step in getting him closer to breathing entirely on his own.

Tonight at the hospital it was Mommy’s turn for the Kangaroo carry. Just as last night, it was a wonderful first time experience. Today Will gained 15 grams, so he now is weighing in at 1,945 grams or 4 lbs. 4 oz. Will has another eye exam scheduled to take place tomorrow. At this exam, the eye specialist will review the status of his stage 1 ROP. We ask you to pray that Will’s eye exam shows that his ROP is regressing.


Day 82 - Friday October 8, 2004
Will had another relatively uneventful day today. Dr. Couser increased the volume of Will’s milk to 36 ml every 3 hours. He also made the change to have him off CPAP for 2 hours and on CPAP for one hour, therefore increasing his cycles of being off CPAP.

This afternoon Kerry his nurse informed us of the results of Will’s eye exam that took place earlier today. The eye specialist determined that Will has now moved into stage 2 of Retinopothy of Prematurity. Although Kerry mentioned that the Dr. did not appear to be concerned by these results, this does mean that his eyes have worsened since his last eye exam. This also means that they must continue to monitor his eyes to see if he will require laser surgery to re-attach his retinas. Today Will gained 25 grams, so he now weighs 1,970 grams or 4 lbs. 5 oz.


Day 83 - Saturday October 9, 2004
Again Dr. Couser increased Will’s feedings to 37 ml every 3 hours. Today Will hit another milestone in the weight department; he gained 30 grams, so he now weighs in at 2,000 grams or 4 lbs. 6 oz. He is officially a member of the 2-kilo club! We request that you pray for Will’s eyes to regress from his stage 2 ROP and that he will not require eye surgery.


Day 84 - Sunday October 10, 2004
Today Will’s nurse Barb informed us that Will decided to maneuver his way into one of the corners of his isolette. She thought it was so cute that she took a few pictures and gave them to us when we came up this morning. Evidently he is getting a little more mobile! He is also tolerating being off CPAP for two hours at a time. As oxygen is what primarily causes the damage to a baby’s eyes, the more he can be off oxygen at all the better. Today Will gained 20 grams, so he now weighs 2,020 grams or 4 lbs. 7 oz.


Day 85 - Monday October 11, 2004
This new week brought with it a change in doctors. It was very interesting for Mommy and Daddy to learn that Dr. Mrozek was going to be Will’s doctor for the week. She was the NICU doctor who was “on call” the morning Will was born. But, because Will was born during a shift change, she was not present for the actual delivery so we never had the opportunity to meet her (even though her name has been on our NICU bracelets from day one!)

Today Dr. Mrozek made a significant change to Will’s orders; she wanted to try Will completely off CPAP. Ultimately, Will has been off CPAP since 8:00 AM this morning and breathing with only a small amount of supplementary oxygen being pumped into his isolette. This was a very noteworthy modification and we are very hopeful that Will continues to do well on his breathing. Today Will lost 5 grams, so he now weighs 2,015 or 4 lbs. 7 oz.


Day 86 - Tuesday October 12, 2004
Well, today was another day with Will off CPAP. The only major change in his orders was that Dr. Mrozek increased Will’s feedings to 40 ml every three hours. Tonight at the hospital Mommy, Daddy and E all had the chance to see how mad Will can get when he is unhappy. For example, he was upset about something and that caused him to raise his heart rate multiple times over the 200 beats per minute mark. Finally he did calm down however when he was getting his milk.

All of this breathing on his own is causing him to burn through the calories. As such, today Will lost 20 grams so he now weighs 1,995 grams or 4 lbs. 6 oz. Thank you all in advance for praying for Will’s next eye exam, which is going to take place tomorrow.


Day 87 - Wednesday October 13, 2004
Wow. What a busy day today brought. This morning Dr. Mrozek changed Will’s orders to try him outside of his isolette. Accordingly, Will has been in a small open-air bassinette since this morning. The doctor also wanted to incorporate one bottle into his daily schedule. Mommy had the chance to feed him this bottle today and he took 36 of the 40 ml. Will also had his eye exam for his stage 2 ROP and the eye specialist noted no change since his eye exam last week. Although he has not regressed, his condition has not worsened. Just as last week, the doctor scheduled a follow-up exam in one week to monitor and re-evaluate. Dr. Mrozek also asked Mommy if we were prepared for Will to come home. This was another very positive vibe given to us by the medical staff.

Many of you have recently asked us what needs to happen in order for Will to come home. As we were curious as well, we have asked the nurses what are some of the key indicators that will allow for Will’s departure from the NICU. Will needs to be taking all of his feedings from a bottle, with no issues. Also, Will needs to be off CPAP. It is possible that he will come home with a nasal cannula (supplementary oxygen that he is currently on) and an apnea monitor. His actual weight is not as important as his ability to breathe and tolerate feedings via a bottle. Finally, he needs to be able to regulate his temperature on his own and have a relatively limited number of breathing spells. As you can very well see, he is now making large strides to hitting these achievements. Mommy and Daddy had set the goal of Thanksgiving for his arrival at home, but now we are thinking it may be somewhere between his due date of November 6th and Thanksgiving. What a blessing it would be to have him home for the holidays.

Tonight, Mommy and Daddy gave Will his first official bath. Heather his nurse filled up a small plastic washbasin with warm water and we put him right in. He absolutely loved it! It was a great feeling to see how much he really liked the water.

On another note, as of today Will is currently 43 cm, or 17 inches long. Today Will gained 60 grams so he now weighs 2,055 grams or 4 lbs. 8 oz. Thanks for all the support and prayers. You can really see the progress we are all making and it sure feels great!


Day 88 - Thursday October 14, 2004
Today was much quieter than yesterday, however we did have a few items to note. This morning they moved Will from NICU station #8 to station #4. This was the first time Will had moved anywhere in the NICU so it was somewhat of an adjustment for Mommy and Daddy, but the change of scenery was nice. The nurses needed to make space available for some critical babies that were heading into intensive care, and station #8 is one of the locations for babies in critical condition. This is a positive sign as the medical staff believes he can move from this location! Dr. Mrozek added another bottle to his schedule so he is now at two per day. This was good as that allowed Daddy the opportunity to feed Will a bottle for the first time. He did pretty well for his second bottle feeding of the day, eating 28 ml out of 40 ml. Today Will gained 40 grams so he now weighs 2,095 grams or 4 lbs. 9 oz.


Day 89 - Friday October 15, 2004
The nurses have informed us that Will can be somewhat particular at times. Right now when he is unhappy, he really wants to be held and rocked. We definitely do not have a problem doing that now that we can finally hold him.

You know you have been coming to the hospital a great deal when Ethan knows the parking lot attendant by his first name. Today Will gained 10 grams so he now weighs 2,105 grams or 4 lbs. 10 oz.


Day 90 - Saturday October 16, 2004
Today was another milestone day for Will. Dr. Camp decided it was time to try Will out of his bassinette and in a crib. He responded to this change very well and he certainly enjoys his new bed!

Mommy and Daddy would like to take this opportunity to thank all of our friends and family members that have been there for us during this time. So many people have given their time by babysitting Ethan, helping us with our yard work, raking leaves, making us meals and bringing us dinner. All of this generosity has allowed us to spend much more time at the hospital to be with Will, and for that, we are so very thankful. One of the things we have learned during this journey is that so many people have been there for us in so many ways. We also want to thank all of you who keep praying with us and for us. That is what keeps us going! Today Will gained 5 grams so he now weighs 2,110 grams or 4 lbs. 10 oz.


Day 91 - Sunday October 17, 2004
Hard to believe, but today marks the date that Will has been in the NICU for ¼ of an entire year. Moreover, he sure has made some significant strides since July 19th! Dr. Camp increased Will’s bottle feedings to three times per day. She also increased the volume of each bottle to 42 ml. Her final note to us was that she inquired if we were ready at home for Will to make his arrival. Although she did not give us an exact date regarding when she believes Will may come home, it once again gives Mommy and Daddy some comfort that he may perhaps come home in the relatively near future. Today Will gained 50 grams so he now weighs 2,160 grams or 4 lbs. 12 oz. Feel free to check out the new pictures that we have posted on the photos link!


Day 92 - Monday October 18, 2004
Today Mommy and Daddy had the opportunity to talk with Will’s Pediatrician. Dr. Bach answered many of our questions of what it will be like when Will is home from the NICU. He also informed us that we are going to have to be extremely cautious during the upcoming winter months and the RSV/influenza season. He noted that we should limit taking Will to public places as Will’s immune system may be susceptible to infections.

Will had another nice day today. He took his three bottles and drank all of them. Today Will gained 35 grams so he now weighs 2,195 grams or 4 lbs. 13 oz. He has officially quadrupled in weight since the day he was born! WOW.


Day 93 - Tuesday October 19, 2004
Today Daddy was talking with an individual who has been in the medical profession for numerous years. He shared some very interesting statistics regarding modern medicine and how advanced medicine now is in the twenty-first century. For example, in 1960, only 10% of babies born at 32 weeks gestation survived. In 1980, the survival rate for babies born at 32 weeks was 40%. Currently, the survival rate of babies born at 26 weeks gestation is 75%. It is truly remarkable what contemporary medicine has done for the treatment of premature babies. These statistics however prove that it is apparent that we are experiencing a modern day miracle considering Will was born between 23 and 24 weeks from conception.

Dr. Camp increased Will’s bottle feedings to four times per day. Taking into account that Will is eating every three hours, the nurses are now giving him half of his feedings via a bottle! We are half way to having him take all of his feedings from a bottle. Will did not gain any weight today, so he continues to weigh 2,195 grams or 4 lbs. 13 oz. Will has another eye exam scheduled for tomorrow to assess the severity of his ROP. We ask that you pray for the eye specialist to find that his eyes are regressing in severity.


Day 94 - Wednesday October 20, 2004
Will had another good day today. Dr. Day (Will’s eye specialist) informed us this afternoon that his stage 2 ROP remains the same. The good news is that it has not regressed to a stage 3. Today Will lost 15 grams so he continues to weigh 2,180 grams or 4 lbs. 13 oz. The nurses account this weight loss to Will burning extra calories with his extra bottle feedings.


Day 95 - Thursday October 21, 2004
This morning Dr. Camp increased Will’s feedings to 45 ml every three hours. Will also had another big change in his sleeping quarters; he moved out of the busy “A” side of the NICU that has 14 stations and into his own private or isolation room. As the medical staff jokingly told us today, “You have definitely paid enough money for his stay thus far in the hospital so we thought Will deserved his own private room for a while.” This is also another sign that he continues to stabilize as he now can be farther away from all of the nurses that surround the main room of the “A” side. He will be able to stay in this room until the census of the NICU changes significantly or until a baby in need of isolation is born.

They are also slowly weaning him off some of his medications such as caffeine in order to prepare him to come home. Today Will gained 65 grams so he now weighs 2,245 grams or 4 lbs. 15 oz. He is closing in on another milestone in the weight category!


Day 96 - Friday October 22, 2004
Today was another quiet day on the ‘Will’ front. There were no new orders from Dr. Camp either. We are noticing that Will really likes the little sound machine that the nurses have put into his crib in order to soothe him. Today Will gained 15 grams so he now weighs 2,260 grams or 4 lbs. 15 oz.


Day 97 - Saturday October 23, 2004
Dr. Camp talked to Mommy and Daddy today at the hospital and she informed them that Will is doing well. Since it is very likely that Will is going to be coming home on oxygen, she informed us that we need to take a CPR class before he can come home. It was another big day up at the hospital as big brother Ethan had the chance to hold his little brother for the first time. E thought it was great when Will looked up at him and made some grunting sounds! Today Will did not gain or lose any weight, so he stays at 2,260 grams or 4 lbs. 15 oz.


Day 98 - Sunday October 24, 2004
The nurses keep reminding us that Will sure likes to be held and rocked and we can certainly agree with that statement. The only change Dr. Camp made today was to stop his daily nebulizer. Otherwise, it was a relatively quiet day. Today Will lost 10 grams so he now weighs 2,250 grams or 4 lbs. 15 oz.


Day 99 - Monday October 25, 2004
It is amazing how nice it is to talk to Dr. Camp and hear her mention more and more about when Will comes home. Today she mentioned that if things keep progressing, Will may possibly come home sometime next week. What he really needs to work on are his bottle feedings. He is currently at 4 bottles per day and he needs to get to 8.

Today Will hit another milestone on his weight. Sharon weighed him tonight after his bubble bath, and… today Will gained 100 grams so he now weighs 2,350 grams or 5 lbs. 2 oz. Thanks for the prayers for Will to gain weight. They are working!


Day 100 - Tuesday October 26, 2004
One hundred days and counting...We have officially hit triple digits on the number of days. Although it seems like yesterday when Will joined our family, we are also beginning to realize just how long he has been in the NICU. By now we know more about the nurses and their families than we ever thought possible!

Today Dr. Couser increased his feedings to 5 bottles per day, and Will appears to be adjusting fine. Also, the hearing specialist tested Will’s hearing and he passed, so that was another positive sign. Today Will gained 40 grams so he now weighs 2,390 grams or 5 lbs. 4 oz. Once again, we ask you to pray for Will’s eye assessment that is scheduled to take place tomorrow.


Day 101 - Wednesday October 27, 2004
Dr. Day looked at Will’s eyes again today and he told us that Will remains at a stage 2 ROP. The doctor, however, is optimistic that Will’s eyes will mature favorably by next week’s eye exam. This was very good news!

Today Dr. Camp increased Will’s bottle feedings to 47 ml and he continues to take the majority of the bottles. We are also finding out that Will typically eats better when Mommy and Daddy feed him as opposed to when the nurses feed him. That is probably a good thing considering we will be the ones feeding him when he comes home! We are also beginning to rely less on watching the monitors that he is hooked up to as we will not have the luxury of knowing his heart rate, breathing rate and oxygen saturation rate when he comes home. The monitor he will come home on will only notify us if he is having a spell. It will not display all of the numbers that we have become so used to watching.

Right now Will is currently 18 inches long. Today Will gained 35 grams so he now weighs 2,425 grams or 5 lbs. 5 oz.


Day 102 - Thursday October 28, 2004
Today was a quiet day for Will. For some of his bottle feedings he ate the entire bottle, while for others he had somewhat of a difficult time. Today Will gained 5 grams so he now weighs 2,430 grams or 5 lbs. 5 oz.


Day 103 - Friday October 29, 2004
Mommy and Daddy arrived at the hospital tonight to learn that Will had one of his big procedures done that afternoon – Will was circumcised, so that is another sign that they are getting him ready to come home sometime in the near future. The nurses gave him Tylenol for the pain and as they mix that into his bottle, Will had somewhat of a hard time taking a few of his bottles during the evening as he did not necessarily like the taste. Today Will lost 60 grams so he now weighs 2,370 grams or 5 lbs. 3 oz.


Day 104 - Saturday October 30, 2004
Dr. Couser talked to Mommy and Daddy at the hospital today regarding Will coming home sometime soon. As of this point, no dates have been set as it still depends on how well he takes his bottles and how soon he gets to 8 bottles per day. He is now eating 6 bottles per day and taking the majority of them.

Dr. Couser also mentioned that due to Will’s considerable chronic lung disease he must see a lung specialist on a regular basis when he leaves the hospital. Today Will gained 110 grams so he now weighs 2,480 grams or 5 lbs. 7 oz. One last item to note, Mommy’s due date is still not for another week. Amazing…


Day 105 - Sunday October 31, 2004
Finally, Halloween is here! During the summer when Will arrived, we kept saying how excited we were for Halloween to come as that would be a sign that maybe he could be coming home sometime soon!

Today at the hospital the nurses informed us that Will was going to be assessed by an Occupational Therapist sometime this week. This will be one of many visits to a therapist for Will as they will need to monitor him for the next several years in order to make sure he is developing properly. Today Will did not gain or lose any weight so he continues to weigh 2,480 grams or 5 lbs. 7 oz.


Day 106 - Monday November 1, 2004
A physical therapist had the opportunity to watch Will eat today, however Will was very sleepy and she was unable to assess his muscle movements so she will come back again tomorrow. Dr. Couser also ordered a speech therapist to come in later this week to evaluate his bottling and try to gain an understanding as to why sometimes he takes the whole bottle and other feedings he only takes a portion of it. Tonight at the hospital Will only took 20 ml from his 52 ml bottle.

Today Will gained 50 grams so he now weighs 2,530 grams or 5 lbs. 9 oz. We were told that years ago the threshold weight for judging if a baby was premature or not at birth was if they were 5 lbs. 8 oz. Looks like Will has surpassed that mark! We ask you to pray for Will to continue to take all of his bottles and for his therapist to find this week that he is progressing and developing at a rate that is proper for his corrected age.


Day 107 - Tuesday November 2, 2004
Election Day has come and gone, and just as before, today was another one of those days that we set as a goal to make it to back in July. Today Dr. Maynard, the NICU doctor who specializes in Pulmonary (lung) problems in infants, had the opportunity to assess Will and his lungs. Dr. Maynard will be Will’s primary lung specialist and he is going to treat Will for the foreseeable future due to his chronic lung disease. The specialist noted that Will’s lungs appeared to look better than he anticipated, so that was very good news! Also today the occupational therapist was present during one of Will’s feedings in order to evaluate his reflexes and muscle movements. She acknowledged that Will may arch his back when he is upset as that may help him breathe easier. Today Will gained 55 grams so he now weighs 2,585 grams or 5 lbs. 11 oz.


Day 108 - Wednesday November 3, 2004
Mommy and Daddy received some exciting news today. Dr. Camp told us the “end is in sight” and that Will is going to be heading home relatively soon. She changed his feedings to 8 bottles per day, and now they will only give him as much as he desires. This is done as we will not be able to feed him via a feeding tube when he is at home and they want to monitor his progress and see how much he truly eats on his own. We also scheduled our infant CPR and apnea monitor class for this Friday, so this also signifies that the end of this storied NICU journey is coming to a close. Finally, Dr. Day checked Will’s eyes to evaluate his stage 2 ROP. Dr. Day noted that Will’s eyes have matured and the threat of his Retinopathy of Prematurity has subsided. This as well was phenomenal news for us to get! Thank you for all the prayers you have sent our way for his eyes.

We also had the opportunity to receive the flu vaccination, so after many weeks of searching, we were finally able to get one. Who ever would have thought that we would have been so excited to get a shot!

This evening at the hospital Mommy and Daddy came to the realization of how lucky we truly are. We noticed one family was experiencing a very difficult time as their newborn was very sick. It only takes something like this to bring us all back to reality to realize we are extremely blessed to be where we are at today. Will gained 20 grams today so he now weighs 2,605 grams or 5 lbs. 11 oz.


Day 109 - Thursday November 4, 2004
Another quiet day today for William. Mommy and Daddy are noticing that the roof of Will’s mouth has an indentation from the breathing tube. Evidently, preemies that are on a ventilator for any extended period may have an indentation on their palate. We found out that after several years a baby’s palate will typically flatten over time. The speech pathologist told us today that in general this has little impact on a child later in life. Today Will lost 35 grams so he now weighs 2,570 grams or 5 lbs. 10 oz.


Day 110 - Friday November 5, 2004
This afternoon at the hospital a nurse trained Mommy and Daddy on the Apnea monitor that Will is going to come home on. We also learned infant CPR and other techniques to assist when a small baby is not breathing. Finally, we learned about the different types of oxygen tanks used for home and travel. In fact, a medical supply company delivered one very large (175 lbs) and five smaller/portable oxygen tanks to our home.

We are on the ‘home stretch’. Now it is just a matter of waiting until the doctor feels that Will is ready. The way Mommy and Daddy look at it, we have waited this long, so a few more days won’t be difficult as we want to make sure he is ready to come home. Will received the Synagis shot today which he will receive every month for the next five months. This immunization helps to reduce the chances of RSV (Respiratory Syncytial Virus). Dr. Camp also wrote an order for Will to be fed small amounts of pear juice in order to help with his constipation. Today Will gained 30 grams so he now weighs 2,600 grams or 5 lbs. 11 oz.


Day 111 - Saturday November 6, 2004
Well, today was Mommy’s official due date! When Will surprised us in July, the medical staff told us to expect to be in the NICU at least until his due date. They sure could forecast his discharge date pretty well! The Dr.’s first order for today was “Anticipate discharge tomorrow.” As long as Will has a good night, he is scheduled to come home tomorrow, on day 112. Mommy, Daddy and Ethan are eager to bring home their new addition. Although we are somewhat nervous, we are extremely excited to have hit this milestone. We guess they say “good things come to those who wait”. Today Will gained 10 grams so he now weighs 2,610 grams or 5 lbs. 12 oz. Thank you for the prayers for Will to be ready to come home tomorrow.


Day 112 - Sunday November 7, 2004
Today the much-anticipated homecoming of Will finally arrived. It was a bittersweet day, as we were very excited to bring our bundle of joy home, yet it was sad to say goodbye to all of the nurses and staff that we have grown so close to. Today represented the closure of one chapter in our lives and the beginning of a brand new one all at the same time. On the day William arrived home he officially weighed 2,610 grams or 5 lbs. 12 oz. and he was 18 inches long. (Ethan weighed 5 lbs. 15 oz. when we brought him home from the hospital.) They also took his official hospital pictures today. The pictures will be available to be viewed on the web in 48 hours, so we will post the web address information to this site when the pictures are ready.

When we came to pick up Will today at the hospital, Deb his nurse (who was the nurse that was on with Will on the day he was born) had him dressed in a little outfit. She also had a little fleece blanket over him that one of the nurses made – one side was Packers and the other side was Vikings. Boy have they gotten to know us. Deb also had William all decked out for his pictures. She even put some styling gel in his hair!

The Dr. talked to us about development and growth, and for the next several years William will be measured as if he were born today, November 7th 2004. The medical staff informed us that today will be considered his “adjusted” birth date, so he will be compared to other children born as of today’s date.

Here is a summary of our hospital stay “by the numbers”. Will was born on July 19th and he was in the Newborn Intensive Care Unit for 112 days; we spent 31% of 2004 at North Memorial Hospital; He was baptized on Day 1 using a small seashell as the baptismal font; We made 192 round trips to North Memorial to visit and care for Will; We drove over 4,600 miles to and from the hospital – this would be like driving from Minneapolis to Los Angeles, then from Los Angeles to Atlanta, and then from Atlanta back to Minneapolis!; Will was on a ventilator for 64 days; During this journey he was given 11 blood transfusions; Over 30 nurses had the opportunity to help keep our precious miracle fighting each and every day; 9 different NICU Dr’s treated William; We received over 450 e-mails from so many friends, supporters and well-wishers; Will gained weight 74 of the days, 23 days he lost weight and 14 of the days he did not gain or lose any weight; Our journal on the web site consisted of 36 pages of typed notes.

We have learned many things since July 19th, 2004. As Daddy’s high school basketball Coach Rudoll always said, “Remember to chalk it up as an experience”. Some of the things that helped us get through this roller coaster ride that we will unquestionably remember in the future included the following: We prayed many, many times a day and tried to hand our worries over to God. We tried to take each day one day at a time. We attempted to put an optimistic spin on as much as we could. We realized that no matter how bad we thought our problems were, all we had to do was look around at some of the other very sick babies in the NICU and instantaneously we would be placed into a reality check. We quickly learned patience, which sometimes was very hard to handle, yet we realized we would not get the answers to those unknowns when we wanted or on our time.

We indisputably were a witness to a modern day miracle. We must remember that our little fighter was born between 23 and 24 weeks gestation. And don’t forget one very important aspect – the North Memorial Medical Center policy is to not resuscitate any baby born before 23 weeks. Obviously, this was all genuinely ‘meant to be’. With God, nothing is impossible!

Strongwilldex.com was beyond a doubt a blessing for us to have as it gave us the opportunity to share our story of hope with so many people all around the globe. Thanks again to our friend Steve for building this site for us. It provided us with an exceptional therapeutic channel to let our feelings flow. It also gave us the opportunity to request specific prayers from the many people who were spiritually with us from the beginning. From the start we intended to use this site until Will came home. Since we really have enjoyed using this as a communication medium, we plan to use this website periodically to update you all on how Will is progressing at least for the next several months. Chances are however, we will not have the ability to post recent updates as frequently as we have done over the last several months.

It is remarkable how much we learned about the necessary medicine needed to support a premature baby. Although by no means are we experts in this area, we do feel that we would be a good resource for someone someday who may go through a similar situation. If the time ever arises that you hear of someone who just gave birth to a micro-preemie/preemie, please share with them our names and contact information as we would love to be there for them.

Thank you to our families for your continued love and support. We are so excited to have the opportunity to share your little brother, grandson and nephew more now that he is at home. To all of our friends who were there for us from the beginning, thank you all. So many of you did so many things, and for that, we are tremendously grateful. Thanks to all of you for laughing with us, crying with us, listening to us, praying with us and supporting us.

To borrow a phrase from the song “Closing Time”: “Every new beginning comes from some other beginning’s end”. So here we are. We made it. Our precious Will is now at home, and this brings with it many new beginnings. God bless all of you and your families!


Wednesday November 10, 2004
Well, we made it through the first several days at home. Will is doing great and adjusting to our home quite well. We went to his first pediatrician visit yesterday and he weighed in at 6 lbs. It sure was strange for them not to report his weight in grams! Mommy and Daddy are remembering again what it is like to have a newborn at home and boy are the sleepless nights worth it.

You can view his official hospital pictures and post a message by going to the following web site www.growingfamily.com. Click on Visit Web Nursery, and enter the following information: Birth date: July 19th, 2004; First three letters of mother’s last name: dex; Then choose the 3rd “William D” link and enter in the following visitor password: 1099847447. Have a great week!


Wednesday December 1, 2004
It is hard to believe that William has been home now for over three weeks. It sure is wonderful to not have to make the daily trips to and from the hospital. We are now settled in at home and getting used to how his oxygen and monitor works. Although things are better than we had originally anticipated, the hard part is trying to not get tangled up in the multiple hoses and cords that we have around our home.

Will has been to the doctor multiple times since his discharge date and things have been moving forward quite well. As of last week Monday, Will weighed 6 lbs. 9 oz. His pulmonologist was also happy thus far with how Will is handling his chronic lung disease. His current assessment is that Will may need to be on oxygen for another 2-3 months.

Last week was Thanksgiving and we sure had plenty to be Thankful for! We have all come a long way since July 19th. Although we still have a long journey ahead of us with all of the unknowns, it is amazing how good it feels to have made it this far. We have realized how blessed we are to have two beautiful boys and a tremendous support network.

Will’s next doctor’s appointment is scheduled for this Friday and at this visit, he will get his second dosage of Synagis (to mitigate his risk of RSV). For the next several months, Will is going to have weekly appointments in order to continuously monitor his developmental progress and weight gain.

Having Will home is wonderful; however, it has obviously consumed the majority of our time. That is why we have not updated this web site as often as we had originally planned. Our current plan is to keep this web site up and running until Spring 2005. We hope to update the details once a week (as time permits) as we know many of you are genuinely concerned and interested in how Will is doing. Thank you all for the continued prayers and support. They are greatly appreciated.


Wednesday December 7, 2004
The weeks seem to be just flying by. As of last week, Will weighed 7lbs. 6 oz. At his last visit, his pediatrician did not have any changes. In fact, Will is not scheduled to go to his pediatrician again until January. That was very good news. He heads into the pulmonoloist on December 23rd for the next check-up of his lungs. Will has had some reportable spells of apnea and low heart rates, so it is going to be interesting to see what Dr. Maynard has to say.

We continue to look for creative ways to soothe him during his fussy period of the day, which is from 7:00 -11:00 PM. Other than that Mommy, Daddy and E are just getting ready for Christmas, which we are obviously going to be celebrating at home this year!


Wednesday December 15, 2004
Wow. Another week has passed. It sure is amazing how quickly time is moving. Will continues to thrive at home. He is currently eating 75 ml (2.5 ounces) at every feeding. Since it is so important that he maintain his calorie intake, we must feed him every three to four hours, day and night.

As far as milestones go, his neck strength is very evident as he now can lift his head and look from side to side while lying on his tummy. He also moves his eyes and tries to follow sounds and movements.

All in all, Will is doing very well. His next scheduled visit with his pulmonologist is next week, so we will update his weight next Thursday. Have a wonderful week!


Thursday December 23, 2004
So here we are. The day before Christmas Eve, and boy do we have a lot to be Thankful for. William is now just over 5 months old. He visited his pulmonologist today and here is a summary of his appointment: Will now weighs 8 lbs. 3 oz. He has gained exactly 7 lbs. since the day he was born! Dr. Maynard was also very pleased with his oxygen saturations so he cut his oxygen needs from ¼ liter to 1/8 liter. He also commented on how his apnea and bradia cardia spells have decreased dramatically. Dr. Maynard pointed out a few things that we need to pay closer attention to: Since Will favors laying on the right side of his head, his head is slowing shaping somewhat off center. This is common with micro preemies since they lay on their head so early as opposed to “floating around the womb” as a full term baby would do. We can try to position his head differently when he is lying down. We will learn more about this when we meet with the Physical and Occupational therapists beginning in January.

As we have all learned, the power of prayer can be phenomenally compelling. As such, we request that you pray for one of our friends who recently gave birth to a beautiful little girl. The doctors are currently looking closer at some possible issues with Riley’s neurological system and we request that you pray for Riley and her family as they are going through some very difficult times right now.

This year we have received numerous Christmas cards and pictures from so many family members and friends. There is a saying from one that really stands out: “Children provide us with the gifts of unlimited inspiration and hope. Through their eyes we see life and unconditional caring…” Isn’t that the truth? We truly realize that we are so blessed to have two beautiful and handsome boys, and we are so excited to spend a peaceful Christmas 2004 with them at home. From our home to yours, we wish all of you a safe and Merry Christmas.


Friday January 7, 2005
A lot has happened during the last week. As we mentioned in our last posting, Will’s head shape is forming somewhat uneven or irregularly. As a result, we took Will to a specialist to assess this condition, which is called Deformational Plageocephaly. The specialist noted that since Will is still small enough and most babies’ heads are still taking shape during their first year of life, we could utilize a device called a “Cranio Cap” to help reshape his head. The Cranio Cap is a custom fitted helmet that Will must wear 23 hours a day for 2-5 months, or until the shape of his head begins to form back to normal. The fitting process was very traumatic for Will so we are happy to say it is over. Sometime in the next 10 days, he will need to go in for a fitting and at that point he will be able to wear the helmet.

The specialist also noted he has Torticollis, which is the tightening of the sternocleidomastoid muscle (the muscle that runs from the base of the neck to the base of the head). This is why he only favors one side when lying down. As a result of this condition, the Dr. prescribed a very aggressive Physical Therapy regimen where we need to bring Will back to Childrens hospital on a frequent basis so they can work on strengthening and stretching exercises that will help improve this condition.

Will went in this week for his monthly Synagis shot and his weight at that time was 8 lbs. 14 oz. We also have a bug floating around our house this week. And since Will has it, his appetite has decreased significantly. We decided to take him to his pediatrician later during the week to make sure everything was all right. He did lose weight and he is back down to 8 lbs. 11 oz. We need to monitor him closely since he is so susceptible to getting sick. His Dr. said we must watch if he has any other signs of sickness (high fever, indentation of the soft spot on his head, etc.) and if he does, we need to bring him back or to the ER immediately. Overall, it is great to be into 2005 and we look forward to updating his progress. Thanks again for all the support and prayers.


Monday January 17, 2005
In order to be creative with trying to ease Will’s fussy times due to his inability to release gas while feeding, we decided to try new bottles. The changes that resulted from using “Dr. Brown” brand bottles have been dramatic. We have noticed a positive change in his burping, comfort during and after feedings and his ability to eat more and keep his food down. Needless to say it was a very good decision to change bottles!

We continue to work with Will on his Physical Therapy (PT) exercises and stretches. We have a busy week later this week as Thursday we take him to get fitted for his Cranio Cap and another round of PT. (For the next month we will have weekly appointments for his PT and Cranio Cap adjustments). In addition, on Friday of this week we have another appointment with his Pulmonologist to assess his chronic lung disease.

In the back of our minds, we continue to wonder when his Oxygen and monitor will no longer be needed. However we were reminded this weekend that the monitor may be here to stay for awhile since he had two Low Heart Rate Alarms as recent as yesterday. We will find out more on Friday, however, it is a good reality check that we may need to have them both in our house for some time. We will note on our site this weekend how his two appointments went.


Monday January 24, 2005
The last several days have been quite busy at the Dexheimer home. On Thursday, Will was fitted for his Cranio Cap. It is a small plastic Orthosis that resembles a small helmet (but with a hole in the top). It wraps around his head and straps on the side of the cap. We had to ease him slowly into the cap in order to make sure he did not have any negative irritation to it. From Sunday forward, he is now wearing it for 4 hours and then he gets a half hour break. He also is sleeping with it on. So far, the transition has gone relatively smooth. We have noticed that it does leave red marks on his head at the pressure points; however, this is common for children who need to wear the cap. We have also realized that he gets very hot underneath the cap, so we are lucky that he is wearing it during the winter months as opposed to the warm summer months. Going forward he will have weekly appointments so the helmet can be adjusted as his head grows. As of right now, they are predicting he must wear this device anywhere from 2-6 months. Everything truly depends on how many growth spurts he has with his helmet on.

Last Friday we had another monthly appointment with his Pulmonologist, Dr. Maynard. The Dr. mentioned that Will appears to “be thriving” at home and he was very pleased with his appearance and growth. At this appointment, Will weighed 9 lbs 10 oz. We all were extremely pleased with his weight gain. Dr. Maynard assessed Will’s oxygen needs and checked his oxygen saturation levels. The plan as of today is to cut Will’s oxygen from 1/8 liter to 1/16 liter during the day; however, we need to leave him at 1/8 liter of oxygen during the night. (We humans slow down our breathing at night while we are sleeping, so this is why he wanted to keep Will at a higher oxygen flow during the night.) We are scheduled to see Dr. Maynard in another month, and several days before that appointment we will put an oxygen saturation monitor on Will during the night and we will eliminate his oxygen completely for the night. This will allow Dr. Maynard to assess how Will does completely off oxygen while sleeping. The best news of the day came when Dr. Maynard told Mommy and Daddy that pretty soon (when the weather gets warmer) we would no longer need the oxygen or the monitors, so before we know it all the cords will hopefully be gone!

Finally, Will is beginning to smile more and more now, which is very rewarding for us. Those smiles sure make all of this effort so well worth it. Please look at the pictures that we have updated on the photos link. Have a great week!


Saturday January 29, 2005
On Tuesday of this week the physical therapist with the Osseo school district made her weekly home visit to assess Will’s progress. She was very pleased with Will’s neck range of motion and she noted that it appeared we are making some great strides with his Tortocollis. She stressed that we just need to continue working with him and getting him to look to his left, as this will continually stretch is neck muscles.

Yesterday Will had his weekly physical therapy appointment in addition to his scheduled adjustment for his cranio cap at Childrens West. Again the physical therapist noted that he had 90 degrees of motion when looking to his right and 84 degrees when looking to his left. This is significant improvement from his initial visit, where he was only showing about 60 degrees of motion to his left. His cranio cap adjustment was relatively uneventful as they only trimmed a small amount off the cap right above his eyes in order to allow the cap to fit better.

William has been spitting up quite a bit after he eats, so we took him to the Pediatrician today to see if he has reflux issues. This was our first guess because Will was on medication while at the NICU to treat his reflux. The Pediatrician agreed with us and he noted that it appears Will does have a reflux issue, so he prescribed some medication that will treat it. Will’s next Pediatrician appointment is February 2, so we will update his site after that appointment.


Wednesday February 2, 2005
Finally, February and Groundhog Day are here. Hopefully that is a sign that spring is on its way! Today Will had another regularly scheduled Pediatrician appointment. He was given his monthly dosage of Synagis and he was also weighed. He is now 10 lbs. 3 oz, so we are all extremely pleased that he is in the 10 pound club! When compared to other babies born on the day he came home from the hospital (November 7, 2004), he is still only at 5% for weight and length. To put this all into perspective, 95% of babies born on the same day he came home from the hospital are longer and weigh more than Will. The way we look at, these percentages may give you a rule of thumb for comparison purposes, but we sure can’t worry about them. We are just lucky that he is with us and gaining weight! All in all, Dr. Bach was happy with his progress and he informed us that he can start his Zantac tonight. Finally, Dr. Bach gave us really good news regarding Will’s feeding schedule; we no longer need to wake him up to feed every 4-5 hours at night. We only need to feed him when he wakes us up. That was wonderful news for us to get!

It sure is funny how we all want our children to grow and get big as fast as possible. Recently we heard a song on the radio by Billy Dean titled “Let them be Little” that puts a lot of this desire for “fast growth” into perspective. Here are two of the verses from the song that really stand out:

“I can remember when you fit in the palm of my hand. Felt so good in it, no bigger than a minute. How it amazes me, you're changing with every blink. Faster than a flower blooms they grow up all too soon….. So let them be little 'cause they're only that way for a while. Give them hope, give them praise, give them love every day. Let them cry, let them giggle, let them sleep in the middle. Oh just let them be little.” Now we just need to remember how fast time moves and how we need to enjoy both our boys as they are right now, and let them be little!


Tuesday February 8, 2005
Mommy and Daddy woke up this morning and asked each other how William did feeding during the middle of the night. Since neither of us fed him, we realized that Will had slept through the entire night for the first time since he had been home! Exactly three months to the day of his arrival home was the first time he did not wake up to eat during the night. This was great as it gave us a full night’s rest, which was perfect timing for us to be well rested for Ethan’s big third birthday today! Daddy took vacation from work and we all had some wonderful family time. It also gave us a chance to spoil "E", as he truly deserved to be pampered considering how good a boy he has been during the last 6 months.

We are noticing how well Will is sleeping and eating. It appears that he is definitely going through a growing spurt. During the last several days (over the course of six feedings per day) he is eating around 19 ounces per day. That means in one day he is now eating the same number of ounces that he weighed on the day he was born. Amazing. Will has also found another source of comfort – his thumb. Every now and again, he will start to suck his thumb and chew on his fingers. We are wondering if he is possibly teething. Finally, we have scheduled his over-night “no oxygen” test for next week Thursday night. What will happen that night is Pediatric Home Service (the company who supplies our oxygen and monitors) will bring a special oxygen saturation monitor to our home and they will hook William up to the monitor for the night while his oxygen is turned off completely. This will be another one of his big tests. We will update his site later next week with more details about his test.


Saturday February 19, 2005
We apologize for not updating the web-site sooner, however our web server was performing an upgrade and we were unable to make any new edits for over a week!

Last Thursday was a big day. Pediatric Home Service delivered an oxygen saturation monitor to our home and they instructed us on how to work the machine. Thursday evening came and the decisive moment arrived. It was time to try William completely off oxygen during the night while he was sleeping. We hooked up the lead to his foot, turned off the oxygen, sat back, and watched. The saturation numbers bounced up and down in the 90’s and it reminded us of what it was like when Will was in the NICU…. watching numbers, hoping, and praying. When Will fell asleep, we put him in his crib and decided that it was time for us to get some sleep as well.

The night went extremely well. Other than his alarm going off once during his feeding at 2:00 AM, his saturation level never dropped below 85, which is the minimum threshold for the alarms. In fact, from what we could tell, his numbers remained in the low to mid 90’s throughout the night. Now Mommy and Daddy are not doctors, but as far as we could tell, this was fantastic! We will find out how Will’s Pulmonologist feels about the results of the overnight test when we meet with him this Tuesday.

On another note, exactly 7 months ago today Will arrived into the world. Although it feels like only yesterday, it also seems like a long time has gone by. Our family has all grown significantly along this journey and we sure are proud of how far we have come. Tonight we all went to church as a complete family for the first time since Will was born – and it felt fantastic. It gave us another opportunity to count our numerous blessings.

Finally, for all of you around the country who have recently e-mailed us about your recent birth of a premature child, we are extremely glad that Will’s web site has become a source of hope and guidance for you. Please know that we are praying with you and for you as you continue on your journey. Also, remember to remain patient and positive.

We will update the web site later this week and provide an update on the results of Wills Dr. visit on Tuesday.


Tuesday February 22, 2005
We were very excited for today’s appointment with Dr. Maynard to arrive as we knew we would find out more details on how Will was doing. Dr. Maynard was pleased with the results of Will’s oxygen saturation “test” last week. As a result he made the decision for us to take Will off oxygen and assess him. If he loses color or does not appear to have pink colored skin, or if he appears to be struggling with his breathing, Dr. Maynard instructed us to put him back on oxygen. This is a tremendous milestone for all of us! However, Dr. Maynard wants to keep Will on the apnea monitor which we are fine with, as we want to make sure we are alerted if there are any issues.

Dr. Maynard also prescribed a special nebulizer three times a day to help treat his “wheezing”. Dr. Maynard called him a “Happy Wheezer”, meaning that he does not appear to have discomfort when he breathing. He also noted that this can be an early indication of asthma. This is not a surprise to us as we knew all along that Will might be at a higher risk for having asthma due to his extreme prematurity, his Chronic Lung Disease, our family history and the fact that he is a male. All of these factors put him at higher risk for having asthma. As a result, we will neb him three times a day and we are scheduled to see Dr. Maynard again in several weeks. To administer the nebulizer, we need to hold a mask up to Will’s face while the medication steams around his mouth.

Today the nurse weighed Will and he is now 10 lbs. 12 oz. This represents a slower growth rate than where he was at last month. However, Dr. Maynard did not seem overly concerned as his weight gain is still within the acceptable limits. Last month Will gained 17 grams per day on average. The target for Will is for him to gain somewhere between 15-30 grams on a daily basis. We also expressed our concerns regarding the number of times and volume that Will spits up, and the fact that his Zantac doesn’t appear to be reducing the number of spit-ups. Dr. Maynard noted that if we do not see a reduction in the number of times he spits-up in the next week, we will need to have a specialist take a scope and view his esophagus to make sure Will does not have any physical characteristics that are related to his feeding difficulties.

Will also had some blood drawn for the PKU test that is usually done when babies are still in the hospital immediately following birth (this is a State mandated test for all babies). However, due to the numerous blood transfusions, they had to wait until his blood completely cycled (90 days after his last blood transfusion.) We will get the results in 1-2 weeks.

Thank you for the prayers for Will to get off oxygen. As you can see, they truly help!


Tuesday March 1, 2005
It is wonderful to see our little man’s face without all the oxygen tubing and the sticky tape on his cheeks. It is also great to see the skin on his cheeks heeling from not having to continuously place and remove the tape.

Will has been off oxygen for a week and he is doing quite well. As of today, he has not triggered any alarms that would indicate that he is struggling when breathing on his own.

Our current concern relates to Will’s feedings. At times, his intake is between 110-120 ml (4 oz) per feeding and at other times, it can be 50-60 ml. The good news is that the higher feedings happen more frequently than the lower feedings. This is just something we want to monitor as Will is on the low end of the desired daily weight gain range. We will also bring this to the attention of his Pediatrician when we go there on Friday of this week. We will update his web site after that appointment.


Saturday March 5, 2005
Yesterday was a very busy doctor day. Will had three appointments and Ethan had one, so we spent a few hours in the doctor offices! Will met with Dr. Wood to assess his Torticolis and his Deformational Plageocephaly (flat spot). Dr. Wood commented that his Torticolis and plageocephaly had all “Dramatically” improved. He also noted that Will could stop the use of his Cranio Cap. This was wonderful news for us! We no longer had to put Will in his helmet. Boy did those 6 weeks sure go fast and it truly is amazing how quickly the cap helped treat his condition.

Will received his monthly dosage of Synagis and he only needs to get one more dose next month. Will weighed in at 11 lbs. 0 oz. The Pediatrician commented that he was comfortable with his weight gain and that it is very common for micro-preemies to have roller coater feedings.

Ethan also had a great 3-year check up. He now weighs 34 lbs. and he continues to grow like a weed. Mommy and Daddy sat back and watched in awe as the Dr. asked E the questions and he responded with all of the answers! It was so adorable to watch and listen to the two of them carry on a conversation. We also realized how it is very easy to take the health of your healthy child for granted.

We are so very blessed to have two beautiful boys. We are also blessed to have received such good news on the progress of Will and Ethan today. Will’s next scheduled appointment is for next week Friday at Childrens Hospital to meet with Dr. Maynard. It is our guess that it won’t be long and he will eliminate the Apnea/Bradia Cardia monitor as well. We are making some very significant strides! Have a wonderful week.


Friday March 11, 2005
Today we visited Dr. Maynard for Will’s monthly Pulmonologist visit. Dr. Maynard delivered some very exciting news – he signed the authorization for Will to come off his apnea/bradia cardia monitor! This was another tremendous step in this journey. For the first time since July 19, 2004, William does not need to have any tubes, cords or monitors anymore. For 236 days, Will needed to be hooked up to some type of machine, but not any longer. He is currently free of all cords and tubes. Dr. Maynard told us to keep all of the durable medical equipment at our house at least until the end of the month just in case William got sick. He did state that we still needed to be cautious with taking Will into public places, as the RSV season still has not yet peaked in Minnesota. Today was a magnificent day; a day that we have patiently waited for to arrive. Our prayers have been answered and William continues to make considerable improvements.


Sunday March 13, 2005
As you all are very well aware, William has made significant progress since July 19th, 2004. During this journey, we have become extremely supportive of the March of Dimes for all the work they do surrounding premature babies. The March of Dimes focuses on the issue of Prematurity since this medical condition has been escalating steadily and alarmingly over the past 2 decades. Between 1981 and 2002, the rate of premature births rose from 9.4% to 12.1%, an increase of nearly 30%. The March of Dimes is stepping up to the plate to take on this devastating problem to find out what causes it and how it can be slowed.

Their current campaign includes: • Funding research to find the cause of preterm births • Providing support to families of babies in the NICU • Helping healthcare providers learn ways to reduce the risk of early delivery • Educating families about the warning signs of premature labor and what can be done to prevent it

With the help of the March of Dimes and their research, we are confident that their work has been one of the key factors in giving William a better chance at life. To show our growing support, our family will be participating in two walks this spring to assist in raising needed funds for this charity.

The first walk will be held in Sheboygan, Wisconsin on Saturday, April 23rd. The 6-mile walk starts at 8:00 am with registration beginning an hour before. We have formed a team named Strong Will Dex WI and we have a designated website for our team at www.walkamerica.org/dexheimer where you can view the details or sign up for the walk with us. In addition, from the above website, you can make a tax-deductible donation towards the March of Dimes that will be credited towards the funds that our team is trying to raise.

The second walk that we will be participating in will be held in Monticello, Minnesota on Sunday, May 8. The 5-mile walk starts at 2:00 pm with registration beginning an hour before. We have formed a separate team for the Minnesota walk that is named Strong Will Dex MN. Just as mentioned above, you can view details, sign up for the walk and make a tax-deductible donation towards the March of Dimes that will be credited towards the donations that our team is trying to raise at the following web site: www.walkamerica.org/dexheimer21.

We would love for you to join us at either location. Please send us an email at dexheimer21@yahoo.com if you are planning to attend one of the walks with us. Thank you all in advance for helping us raise money for this wonderful charity and helping us “Save babies together”. We will continue to post updates about our walks on this web site.


Sunday March 20, 2005
It sure is amazing what can all happen over the course of one week – not at all related to Will’s health as he is doing wonderful – but surrounding the outpouring of support that we have seen related to donations of time and money towards the March of Dimes. One week ago today we set up the web sites for Will’s two walks and we are speechless as to how supportive people have been. As of today, people have donated over $2,400 in support of our walks. In fact, we have been named the “Ambassador Family” for the Wisconsin walk. This means that Will’s story will be the headline for getting people to contribute and walk. Following is the press release from the March of Dimes that will be issued around this announcement:

Family returns to Sheboygan as WalkAmerica Ambassadors: Craig and Jessica Dexheimer know the real meaning of little bundle of Joy. Their son, William, arrived 16 weeks early, weighing only 1 pound, 3 ounces on July 19, 2004. One year later, William, along with his parents and big brother Ethan, has the honor of being the Sheboygan area ambassador for the March of Dimes WalkAmerica. – The Dexheimer family will lead the WalkAmerica event in honor of their great struggle against prematurity. “Having premature children is something that nobody plans for,” says Craig. “We are grateful for all of the love and support that we received. We would not have been able to make it through those challenging days without it.” – Premature birth occurs in one out of every eight live births in this country, making it a common and serious problem. It is the leading cause of newborn death. Since 1981, the problem of prematurity has rose 29 percent and no one is working harder than the March of Dimes to find out why. Many survivors of prematurity suffer lifelong consequences, such as chronic health conditions or developmental disabilities, which take emotional, physical and financial tolls on all of those affected. – “To show our support for the March of Dimes,” Jessica said, “our family will be participating in the Sheboygan WalkAmerica to assist in raising needed funds for this charity. With the help of the March of Dimes and their research, we are confident that their work has been one of the key factors in giving William a better chance at life.” – If your family has been affected like the Dexheimers and you are interested in becoming involved in WalkAmerica, become a family team. Family Teams put a face on the March of Dimes and give a voice to our campaigns. Families are the heart of March of Dimes mission. Sharing their stories – of preterm labor, premature birth, NICU experiences, birth defects, childhood diseases, pregnancy loss, or infant death – Family Teams communicate the vital importance of the March of Dimes and all that it does. Whether miraculous or tragic, each story sends a powerful message. – Join the Dexheimers and fellow Sheboygan residents on Saturday, April 23rd for the 2005 Sheboygan walk. Registration is at 7:00 a.m. The Dexheimers will lead the way for WalkAmerica at 8:00 a.m. – Local sponsors of this year’s WalkAmerica include, Blue Harbor Resort & Conference Center, 104.5 the Point, Sheboygan’s ESPN 950, Sheboygan’s TV8, Kohler Company, Curt G. Joa, Pemco, Rehab Resources, and Sheboygan Falls Curves for Women. Wisconsin statewide sponsors include AIG American General Finance, Lands’ End and Shopko. National sponsors include CIGNA HealthCare, FedEx, Discovery Health Channel, Prevention Magazine, Farmers Insurance Group, MeadJohnson, Famous Footwear and the Kmart Corporation. – The March of Dimes is a national voluntary health agency whose mission is to improve the health of babies by preventing birth defects and infant mortality. Founded in 1938, the March of Dimes funds programs and research, community services, education and advocacy. For more information, visit the www.walkamerica.org/dexheimer.

Again, thanks to all of you who have so generously donated to the March of Dimes on behalf of Will. For those of you who will be walking with us, we look forward to seeing you all very soon. We will continue to update Will’s web site with details about our upcoming walks. Have a wonderful week.


Friday, April 1, 2005
As you can see be the frequency of our recent updates, William has been going to the doctor on a less frequent basis. This is a very good thing and it shows that Will continues to make strides forward.

Today Will visited his pediatrician for his monthly check-up and Synagis shot. As of today, he weighs 11 lbs. 15 oz. On the prematurity chart, he is now in the 50% range for weight, so he has made tremendous strides in this category. He will continue to receive 1-2 nebulizer treatments per day to assist with his wheezing. The doctor also told us that we can stop his daily iron supplement as his blood hemoglobin was now in the proper range. In addition, we can introduce cereal into William’s diet so that was also exciting news. The doctor mentioned that William is behind when reaching out, grabbing for, and holding toys. He currently shows little interest in reaching for objects. As such, we will need to continue to work with him from a physical therapy perspective on this.

The support behind both our Wisconsin and Minnesota March of Dimes walks continue to gain momentum. As of today, we have raised over $4,000 in total and our first walk is still over 3 weeks away! We also continue to build the list of people who have committed to walking with us. 49 walkers have signed up for our Sheboygan walk on April 23rd and 35 people will be participating in our Monticello walk on May 8th. Thanks to all of you for the outpouring of support. It feels wonderful to have so many people rallying around us!

On a final note, please be sure to check out the updated pictures we have posted on the photos link!

Saturday, April 9, 2005
The weeks continue to clip along very quickly and we are very excited to be getting some beautiful weather. With nice weather comes the opportunity for us to finally leave the house with William a bit more often and this helping to relieve some of the cabin fever! We started him on cereal this week and his progress is going somewhat slow. However, just as it has been with his bottle feedings, we know that we must stay patient.

Only two weeks two go until our big walk for the March of Dimes in Sheboygan. We found out some wonderful news this week: Thrivent Financial has committed to making a very substantial donation to our walking team. Thank you to Thrivent for your tremendous support! The charitable giving continues to climb. For both of our walks, the total amount of funds raised is now over $4,500! Have a wonderful week.

Saturday, April 16, 2005
William continues to do well overall. We have decided to stop feeding him cereal at this point as he just was not doing very well with it. He may be too small right now so we will try again in a few weeks. William also had one of his monthly physical therapy appointments this week and the new skill we need to work on with him is opening up his hand and grabbing onto toys. There is always a new skill that they want us to work with for him!

Only one week to go until our first walk for the MOD. We are getting very excited and we are keeping our fingers crossed for good weather in Sheboygan. In addition, we are planning a small 9-hole golf outing for that afternoon in which all of the proceeds will benefit the March of Dimes. We will post the specific walking and registration details on our site later this week! Remember, for those of you who are walking, the walk starts at 8:00 AM next Saturday!

Wednesday, April 20, 2005
Only three more days before our special walk in Sheboygan. Here are a few details for those of you who are walking that morning: The walk is scheduled for Saturday, April 23rd. The walk will start at the Blue Harbor Resort and Conference Center. Registration is from 7:00 AM to 8:00 AM and the walk will start promptly at 8:00 AM. Please allow time to find parking and to fill out the necessary information. (All people who are walking need to fill out a registration form before walking.) ON YOUR REGISTRATION PLEDGE SHEET, PLEASE WRITE “TEAM STRONG WILL DEX” AT THE TOP. This will allow us to track all of the funds raised. Food will be provided before and during the walk and there is a Johnsonville brat fry immediately following the walk. Each walker will receive a goodie bag full of fun stuff at the completion of the walk with a special goodie bag for kids. Remember to wear WARM and comfortable clothing and walking/tennis shoes. The walk will take place rain or shine and as of right now, it looks as though it is going to be a chilly morning. However, if there is rainy or stormy weather, the walk will be shortened. There are checkpoints along the way where walkers can rest and get something to eat or drink. It will definitely be a wonderful morning for a great cause!

We would like to say thank you to Guy Miller and his staff at Town and Country Golf Club for giving us discounted greens fees for our first annual March of Dimes Strongwilldex 9-Hole golf outing that will be held Saturday afternoon. Also, a big thank you to Al Schulzetenberg and his company Perrigo for donating a wonderful gift pack of their products for each golfer. In addition, the following organizations and local businesses have donated some wonderful prizes and gifts for our event: The March of Dimes, Western Golf Association, Dan Olson and Cousin’s Subs, Manning’s Bar & Grill, Jake’s, The Sky Box Sports Pavilion, SEH Consulting, Merchant & Gould, Sandee’s and Vreeke’s. Thanks to all of them for their support of this event!

Again, for all of you who are walking, we will see you at the Blue Harbor Resort and Conference Center between 7:00 AM and 8:00 AM this Saturday. We are looking forward to seeing all of you!

Saturday, April 30, 2005
Our first WalkAmerica event was a huge success. We would like to extend a very sincere thank you to everyone who braved the elements to be there and walk with us. The walking conditions definitely were not “optimal” (33 degrees, snow flurries, and 30 MPH winds off Lake Michigan) so we were extremely pleased to have 218 walkers there at 8:00 AM. Everyone was bundled up in snow gear, but there were many smiling faces there because everyone knew we were supporting such a great cause. The event was a tremendous success. The total walk raised over $32,000 and our team raised $6,351 of that total. Amazing considering our initial goal was a modest $1,000.

Our first annual MOD Strongwilldex golf outing was also a huge success. We had 16 golfers who also braved very windy and cold conditions that afternoon. The first annual event raised over $250 for the March of Dimes. We plan to continue this tradition again next year in conjunction with the WalkAmerica event. Congratulations to Brad Dexheimer for taking the overall champion honors and trophy with a 46!

As Will’s story has been very interesting to many people, we were interviewed by the Sheboygan Press after the walk to tell our story. Here is the article that was on the cover of the Sunday edition of the Sheboygan Press: “Walk benefits March of Dimes” Emmitt B. Feldner, (Sheboygan Press staff) At only 12 inches long and weighing just 1 pound 3 ounces, William Arthur Dexheimer was a handful -- just barely -- when he was born. Now, nine months after he was born 17 weeks premature, his parents Craig and Jessica consider their bright-eyed "Strong Will" to be a true blessing, thanks largely to treatments and medicines made possible in part through research funded by the March of Dimes. That's why the couple served as the ambassador family for Saturday's March of Dimes Walk America in Sheboygan. "Without the March of Dimes, I believe my son would not be here today," said Jessica, 29. "They have done so much they've blessed us with our child." "That's why we feel so good about giving back to them," said Craig, 31, a Sheboygan native. "It feels tremendous that we can give back to an organization that helped keep our son alive." With family and friends, the Dexheimers provided about 70 of the roughly 300 walkers who braved the blustery cold and blowing snow Saturday morning to walk six or 12 miles to raise money for the March of Dimes. According to event coordinator Carrie Jordan, the total was nearly double the number of walkers from last year. Even before the last walker was done, the event had raised more than the $24,000 brought in last year. "We are currently in a 10-year campaign to find answers to why so many women are having premature babies," Jordan said. She pointed out that one of eight babies nationally is born premature, and one of six in Wisconsin. While many walked Saturday for and with the Dexheimers, others walked because, as 64-year-old Joe Feustel said, "It helps out a good cause and you know where it goes." Feustel was walking with his brother Jerry, 66, and his daughters Roxanne Krug, 41, and Kris Feustel, 37. He said they walk in a number of charity fundraisers because it gives them all a chance to get together and do something worthwhile. "It's an entertaining way to raise money for a cause we believe in," Krug said. "Instead of just sending in money, it's something we can do as a group." The Dexheimers will be walking again in two weeks in a Walk America fundraiser near their home in Maple Grove, Minn., and Craig said they expect to raise over $7,000 between the two fundraisers. "There's a competition between Minnesota and Wisconsin for donations," Jessica a native of Hibbing, Minn., said, then added, "but it's a comforting one." Comfort is something the Dexheimers didn't enjoy much of after Will, whose due date was Nov. 6, was born on July 19 at the North Memorial Medical Center in Robbinsdale, Minn., a northwestern suburb of the Twin Cities. He was delivered by Cesarean after Jessica suffered a placenta abruption. The Dexheimer's second son (Ethan, their oldest, is 3 years old) was barely larger than his father's hand. He spent the first 112 days of his fragile life in the neonatal intensive care unit at the hospital, the first 62 of those on a respirator. It was a month before his mother could hold him and two months before his father got to hold him. With lung, eye and other problems associated with prematurity, Craig said, "He was right on the borderline of viability. Right from the beginning, the doctors told us to have guarded optimism." "There's nothing like sitting by the phone dreading that phone call," Jessica said. They literally got to watch the last four months of Will's pre-natal development take place in the unit. While Craig said it was amazing to watch the development, Jessica quickly added that, "It's an experience I would wish upon no one else." Even now, Will is receiving regular physical therapy and has been off oxygen only for a few weeks. His development will continue to be monitored, as premature babies are more prone to a variety of developmental problems. The Dexheimers kept a daily journal of their experiences that they have posted on a Web site, www.strongwilldex.com, in an effort to help others facing the same trials they have. They've received more than 600 e-mail responses from people all across the country, Craig said, and they're considering publishing their journal in book form to help even more parents in the same situation. "We just want to make them aware of the roller coaster that's ahead of them, and it is a roller coaster, with lots of ups and downs," Jessica said. But with tow-headed Will, now 12 pounds, laughing in his grandmother's lap at Craig's parents' home in the Town of Sheboygan, Saturday was definitely an up for the Dexheimers.

Again, thanks to everyone who pledged, walked or helped us out on Saturday. Thanks as well to Grandma and Grandpa Dex for all their hard work in making this event such a huge achievement. We are really looking forward to our walk scheduled for Sunday, May 8th in Monticello, MN! We will post the details for this walk during the middle of this week.

Wednesday, May 4, 2005
Only three more days before our walk in Monticello, MN. Here are a few details for those of you who are walking that afternoon: The walk is scheduled for Sunday, May 8th. The walk will start at the Monticello Community Center and registration is from 1:00 PM to 2:00 PM and the walk will start promptly at 2:00 PM. Please allow time to find parking and to fill out the necessary information. (All people who are walking need to fill out a registration form before walking including those of you who have already made your donation.) ON YOUR REGISTRATION PLEDGE SHEET, PLEASE WRITE “TEAM STRONG WILL DEX” AT THE TOP. This will allow us to track all of the funds raised. Food and water will be provided before, during and after the walk. As we learned on our last walk, remember to wear WARM and comfortable clothing and walking/tennis shoes. The walk will take place rain or shine. However, if there is rainy or stormy weather, the walk will be moved inside the community center. There are checkpoints along the way where walkers can rest and get something to eat or drink. It will definitely be a wonderful afternoon!

Saturday, May 7, 2005
Today was a very busy day. Right after lunch, Grandma Dex changed Will’s diaper and it appeared that there was a very reddish substance in his diaper. Considering the fact that it looked like it could be blood, we promptly decided to take William into the ER so we could have them look at it. As such, we made a very familiar trip to North Memorial Hospital where the Doctor took a sample of what the red substance was. The good news was that it was not blood, however he could not determine what exactly it was. He asked if we have fed William anything red such as beets or Jell-O, and when we told him that he was only on formula, he was even more perplexed. His best guess was that it could be a result of how his body is processing the numerous new medicines and steroids that he is on due to the fact that this week he came down with a touch of pneumonia. We just need to watch it closely to see if it continues and then we will need to bring him back to the hospital. We definitely were very relieved that it does not appear to be anything serious. However, it sure gave mommy and daddy a bit of a scare! As of right now, we are still a “go” for our MOD walk so we are looking forward to seeing those of you who are walking tomorrow in Monticello!

Wednesday, May 11, 2005
We are very happy to report that our second walk for the March of Dimes was very successful. For that walk, we raised over $4,580 and we had over 30 walkers on our team! We were also recognized for being the top money raising team of the day. Both of our walks have now raised over $10,000 for the March of Dimes. Words cannot begin to express how grateful we are to all of you who mad a donation and/or walked with us. THANK YOU ALL AGAIN SO VERY MUCH!

Saturday, May 14, 2005
Today was a day that we have been waiting for since the day William was born. We celebrated Will’s baptism today. Last July, Will was baptized 2 hours after he was born as we didn’t know if he was going to survive. Today was the day Pastor Peter and Lord of Life Church helped celebrate his Christening with a beautiful service. We would like to thank Will’s sponsors Jennifer Myre and Mark Speltz for their continued love and support. We would also like to thank Pastor Peter for a very memorable and tear evoking ceremony. After the church ceremony, over 30 family and friends helped us celebrate at home. It sure was a wonderful day!

Wednesday, May 18, 2005
Will is now rolling over from front to back and back to front! This is a very big milestone from a physical therapy perspective as that shows his muscle development continues to get stronger. Also, we took Will into the doctor today and he now weighs 12 lbs. 15 oz.

In late April Will caught a bug that turned into a bad cough which then turned into pneumonia. His Doctor prescribed a steroid to speed up the healing process and to prevent it from getting worse. Boy did we learn what other things steroids can do! Will was very jittery and wide-eyed all the time. We called the NICU and asked them what side affects steroids can have and they said it is like drinking a pot of coffee and having a caffeine rush all the time. There was one day where Will only slept 6 hours in a 24 hour period. We were lucky he was only on that for 5 days, but boy it seemed like an eternity. The steroids did serve their purpose, as his cough and rattle in his lungs went away. However, his pneumonia has taken a toll on his ability to breath. Before his illness, we were only giving him a nebulizer once a day as a preventative. Now, per the Doctor’s request and Will’s constant reminder with his wheezing, it has increased to 4 times a day. It is definitely a reminder of how delicate his lungs are and what a small bout of pneumonia can do to his ability to breathe. It also serves as a reminder of how cautious we still need to be with him.

Saturday, May 21, 2005
Today was a very special day. Mommy finally gave Will his first haircut! His hair was getting so long many people in public were mistaking Will for a little girl. Now he looks like a little boy again! His breathing is slowly getting better; however, he continues to consistently wheeze. We are also noticing that he appears to be in the teething process as he continues to want to bite down on things while he drools. He is also now on rice cereal two times a day and that seems to be going relatively well. This week Friday we take him to see his pulmonologist to see how his lungs are doing. Have a wonderful week!

Saturday, May 28, 2005
Will went to see his lung doctor yesterday. Dr. Maynard was happy with his current weight of 13 lbs. 5 oz. We explained to Dr. Maynard that William has continued to wheeze when he breathes, and it has not improved much since he came down with pneumonia. Dr. Maynard recommended that we schedule an upper GI test where they will look to see if Will has an issue that is anatomical in nature. They will also look to see if there are any other issues with his airway, possible with his tracheal functionality. Overall, however, the doctor was very pleased with his progress and he noted that he felt Will was doing well. We are hoping to get this procedure scheduled during the next several weeks so we will keep everyone posted. Have a great Memorial Day!

Friday, June 3, 2005
Will went in for his upper GI test to look and see if he has any airway obstructions. He had to drink 3 ounces of sugar water and the specialist used a camera outside of his body to view his throat and wind pipe. The wonderful news is that there are no apparent airway obstruction issues, so we felt extremely blessed once again to have received such wonderful news. On another note, Will has been very fussy and running a very high fever (102 degrees), so we took him in to the doctor once again. We found out that he actually has a very severe double ear infection! Thus, Will was prescribed several more meds (and so was Ethan as he has a single ear infection), so we need to ride this out and let it all pass. It goes to show you that Will’s immune system is still very fragile!

Friday, June 17, 2005
We took William back into the doctor once again as he has been spitting up quite a bit. They recommended that we put him back onto Zantac and increase him to two nebulizer treatments per day as this hopefully will reduce his voluminous “spit up’s”. The doctor also checked his ear infections and they now appear to be better, so that is great news. Finally, the doctor recommended that we take him to see an audio specialist in order to get his hearing checked. Babies born very prematurely can have severe problems with eyesight and hearing, so our doctor wants to get his hearing checked out at this point in time. As such, we have scheduled a test with an audiologist in two weeks.

It is amazing to think that Will is now nearly 11 months old. Last year at this time was when all of the major issues began to transpire with Jessica’s pregnancy. Where did the year go? Finally, Craig attended his first Twin Cities March of Dimes meeting this week. He is getting involved with the Board of Directors and he will be leading a statewide revenue planning committee. It is our way to continue to give back to the organization that we feel played a big role in Will’s survival. If you know anyone who would be willing to volunteer and serve on this financial committee, please let us know as he is looking to recruit a few volunteers with a financial background who can help look for creative ways that the March of Dimes can raise additional funds! Lastly, a quick weight update: Will now weighs 13 lbs. 6 oz. and he is 26 inches long.

Sunday, July 3, 2005
Summer continues to move by so quickly. It is hard to believe that one year ago today was when Jessica began to have some major complications with her pregnancy. Will continues to battle multiple ear infections. In fact, they just never seem to disappear. As a result, we are taking Will in to see an Ear, Nose and Throat specialist (Dr. Sumakh) this week Friday so he can assess if he will need to have tubes put into his ears. Will’s pediatrician urged us to take him in and get an assessment. Dr. Sumakh is the same doctor who put in Ethan’s ear tubes and he was also the doctor who performed Will’s bronchoscopy while he was in the NICU – so we know him quite well! We also recently had Will’s hearing checked with an audiologist and they noted that he is showing some early signs of hearing damage/loss. Evidently, babies who are on a respirator early in life are at a higher risk of future hearing loss, so they will continue to monitor Will’s hearing. Will is doing well on his cereal, fruits and vegetables. We think this is helping him gain some much-needed weight. As of last week, he weighed 14 lbs. 6 oz. Have a happy and safe 4th of July!

Sunday, July 10, 2005
Good news from our ENT appointment last week Friday – As of right now Dr. Sumakh does not feel as though William needs to have tubes put in his ears. He noted that we need to reschedule with him in 4-6 weeks to reassess how his ears are doing. So, all in all that was very good news. Also, please check out the new photos we just posted on the photos link!

Tuesday, July 19, 2005
HAPPY BIRTHDAY WILL! Today is William’s first birthday! What a difference a year makes. Last year at this time it seemed as though our world was crashing down upon us and today we are blessed to have Will with us as a healthy little one year old.

Today we took Will to see his pediatrician for his 12-month well baby appointment. Will officially weighs 14 lbs. 5 oz. and he is 28 inches long. He sure has grown from his birth of 1 lb. 3 oz. and only 12 inches in length!! Although he appears to have lost some weight during the last several weeks, the Dr. does not seem overly concerned at this time. Will has had somewhat of a cold and his appetite has not been great over the last week. Overall, the doctor was very pleased with the progress William has made considering how premature he was when he arrived.

Tonight we went up to the hospital to visit all of the nurses in the NICU. We took a birthday cake up to celebrate with them. It was truly wonderful to see the familiar smiling faces of those who helped save our little miracle. We shared stories and memories. It was wonderful!

Thanks to all of you who have been at our side praying for strength and hope over the last year. We would not have made it through the last year without your prayers. Will’s story is evidence that miracles do happen and prayers truly work!

Monday, August 8, 2005
The summer continues to move quickly and considering how busy we are right now, it sure seems like forever ago when we were all house bound during the winter months. The ability to get out is wonderful.

William continues to fight chronic ear infections. We just met with the ENT again and this time the doctor finally recommended that we put tubes in his ears to help reduce the frequency and severity of his ear infections. Will has been scheduled for his surgery on Thursday, September 8th at Children’s Hospital in Minneapolis. Although this is a relatively simple procedure, it takes on a very different meaning with Will, as he was so premature. We have been told that any time a micro-preemie is put under anesthesia, there are numerous risks such as apnea and trouble breathing. In fact, Will is going to be monitored very closely after his surgery and may even need to stay overnight in the hospital. We are hoping that the procedure goes very smoothly and he will be able to spend the night back at home!

Today Will had his first table food: mashed potatoes from the garden. He actually did not mind them and he even made some funny faces!

We continue to remain involved with the greater Twin Cities chapter of the March of Dimes. If you know of anyone who may be willing to help serve on the March of Dimes Revenue Committee, please contact us directly at dexheimer21@yahoo.com.

On another note, Craig continues to work on a book about Will’s story. It is our goal to publish William’s journey through the NICU at some point in order to possibly help other parents through the NICU experience. The galley (draft) is in the first stage of editing and we have already discussed our plans with a publisher. Stay tuned for more details around this exciting aspect around Strong Will Dex!

Tuesday, August 23, 2005
Today Will had another visit with his pulmonologist to assess his lungs. Dr. Maynard gave Will an overall positive assessment and he has cut back his nebulizer treatments to every other day. Will weighed in at 14 lbs. 8 oz., so his weight gain has started to slow down. Dr. Maynard was not concerned with his slower than expected weight gain, however, as he noted that after one year of age, babies begin to gain weight at a slower pace than during the first year. We were also informed that Will would not be eligible for the RSV Synagis shot, which means that hopefully Will continues to remain healthy during the winter months. Dr. Maynard discussed Will’s upcoming ear surgery and he noted that as long as Will was going to be put under anesthesia, he wanted the ENT to look at his windpipe via a bronchoscopy, just as he had done when they initially felt he needed a tracheotomy. This means that Will’s procedure will now take over an hour and due to this, we needed to reschedule his surgery to Monday, October 3. Have a great week!

Friday, September 23, 2005
It has been awhile since we have updated the site! Will’s tube surgery is set to take place next Monday, October 3rd. Since he is going to be under anesthesia, they are also going to perform another bronchoscopy. Thus, a 5-minute procedure will now be extended to over 1 hour. We are anxious to get the results from the procedures and we are confident everything will go smoothly. He has had numerous ear infections as well as some colds. (Welcome to fall!!) We also have been having some difficulties feeding him. He eats his baby food, but fusses through the majority it.

In August, he only gained 4 oz in a month. We consulted a dietician and he was put on DuoCal, which is a tasteless powder that we mix in his puréed foods that gives him added calories. A helpful hint the dietician told us was that he may possibly like strong flavored foods such as lemon or lime yogurt or possibly even spicy foods. We tried him on Pediasure, but he wasn’t fond of it. So we are back on formula for the time being. Hopefully in a couple of weeks we will switch to milk!

We were referred to Children’s Feeding Clinic, which will hopefully help us with his oral aversions. Now we just need to get through the very detailed paper work to set up an appointment. Since his issues with weight gain in August, he has gained over a pound. He currently weighs 15 lbs. 5 oz.

We are also happy to report that he is now starting to crawl. Also, he is also starting to find his balance while sitting. His Physical Therapist is very happy to see his progress. We were concerned with his lack of sitting but she informed us that it is a great thing that he has always progressed and has never hit a plateau with his motor skills. As parents of a preemie, it is hard not to worry about his development but yet we don’t let it take control! We continue to consult the therapists and Doctor’s about our concerns and then move on. Thanks for all the well wishes for his upcoming surgery! We will update his web site after the surgery.

Tuesday, October 4, 2005
Will’s ear tube surgery was a tremendous success yesterday. In addition, the ENT specialist looked at his windpipe and subglotic area of his throat and noted that everything appears to be normal in size. This is wonderful news as his doctors have always felt that his windpipe was too small and was not growing fast enough. The specialist even shared pictures from his bronchoscopy with us, which we could noticeably tell how the size of his windpipe has grown since his last bronchoscopy. Finally, there were no issues with Will’s apnea while under the influence of anesthesia. We feel very blessed that Will came through these procedures with no issues at all. Thanks to all of you who called or e-mailed with your well wishes! At his pre-op appointment, he weighed in at 15 lbs. 12 oz., so it is nice to see him beginning to gain some weight once again. The DuoCal calorie supplement appears to be helping him pick up a few extra ounces! Will’s next doctor appointment is in two weeks so we plan to update the site at that time.

Tuesday, November 1, 2005
Today Will had his NICU follow-up visit. At this appointment, William saw a Neonatologist from Children’s Hospital as well as an occupational therapist that specializes in premature infants. Overall, the specialists were very pleased with how he has progressed during his year at home. They noted that he is currently at the developmental stage of an 8 month old. Nonetheless, they are not generally concerned as he continues to be alert and progressing with his developmental and motor skills. As he is being studied and monitored, he will go back to the NICU follow-up clinic in 6 months. William also had his eyes checked by a pediatric optometrist and he is showing no signs of having any eye issues. This is truly a blessing as a year ago, his retinas were beginning to detach from the back of his eyes. The optometrist noted that William now has the same vision that other normal infants his age have. Overall, today’s NICU follow-up visit was very positive!

Monday, November 7, 2005
Today marks the day that William has been with us at home for exactly one year. Amazingly enough, the time has gone remarkably fast. Will is now extremely mobile. He is crawling and rolling around everywhere. He now can even crawl up a flight of stairs! Looks like we have a very active little boy on our hands, which the physical therapist notes to be a very positive thing! Today we took Will to see his pediatrician and he now weighs 16 lbs. 12 oz. His doctor was pleased with his weight gain. William continues to thrive beyond our imagination. We will update the web site after Thanksgiving.

Wednesday, November 30, 2005
Thanksgiving has passed however, our family sure had numerous things to be thankful for. Two beautiful boys. A wonderful family. Great friends. The list continues on and on. Since his tube surgery, he has not had one ear infection. In fact, he has not had time to get them! He is too busy working on his moving around the house and getting into things such as the dogs water dish. He has now mastered going up stairs and he can slide down on his belly as long as we help turn him around at the top. His physical and occupational therapists continue to work with him quite often on his fine motor skills, such as holding and banging two blocks together. Will is also recovering from a cold and as a result, his breathing has become slightly more difficult so we are watching that closely. We are preparing for Christmas and it will be very interesting to see how we can keep him away from the Christmas tree. We would like to wish you and your family a wonderful and happy holiday season!

Wednesday, December 14, 2005
Today William had another Pediatrician appointment. Overall, the appointment went well. Will now weighs 17 lbs. 4 oz. He has also finally cut his first upper tooth. He now has one of his first two front teeth, just in time for Christmas! From an occupational therapy perspective, we continue to get new exercises that we are encouraged to work on with William. One such example is playing “tug of war” with him. This will begin to strengthen his hand muscles. Also, putting objects and toys into his hand and having him hand them back is a good way for him to develop his reflexes. Getting him to move around the room via walking from one piece of furniture to another will also begin to give him more confidence. As you can see, we have many new exercises and routines that keep us very busy as we look to develop his fine motor skills. We would like to wish you all a very Merry Christmas and a Happy New Year!
Monday, January 30, 2006
We started off 2006 in very good shape. We all were very healthy and looking forward to staying that way for the winter months. However, all of the sudden in January the Dexheimer household started to get sick. Just last weekend, Will was having a difficult time breathing so we took him to the ER at Children’s Hospital, where they diagnosed him with RSV, which is a severe virus of his lungs and respiratory tract. As he was born very premature, he is more susceptible to RSV and other breathing issues. Thankfully he did not need to be admitted into the hospital. He was given steroids to treat the inflammation of his lungs and we need to give him 2-3 nebulizer treatments each day. We need to watch him very closely so the RSV does not progress any further. Will received a series of Synagis shots last year, which helped to keep him RSV free. Unfortunately this year he was not eligible for the shots, and it looks like he really could have used them! As a result of his illness, he has lost 6 oz. in the last week due to his diminished appetite. Hopefully he will regain his desire for food soon. On a positive note, he is getting closer and closer to walking. In fact, he now takes 5-8 steps on his own. This is very exciting and his physical therapists are very pleased with this progress!
Wednesday, February 8, 2006
Today we all spent the day celebrating Ethan's 4th Birthday. It was great to see Will taking steps on his own and walking towrds his proud big brother!

Spring is just around the corner and with it brings another opportunity for us to raise much needed funds for the March of Dimes. As you are aware, 18 months ago Will arrived into this world at 24 weeks gestation. He only weighed 1 lb. 3 oz. at birth and he spent 112 days fighting for his life in the NICU at North Memorial Hospital. On the day he was born, William was given Surfactant, a drug that helped his lungs function while saving his life at the same time. Surfactant was researched and developed by the March of Dimes, so we are committed to their current campaign to fight premature birth. Last year we raised over $10,000 for the March of Dimes and we look forward to surpassing this mark in 2006! This year the Minneapolis and Sheboygan walks are on the same weekend, so unfortunately we are only able to walk in Minneapolis. (We will be back at the Sheboygan walk again in 2007!)

Premature birth is the leading cause of newborn death in the first month of life. It affects over a half a million babies a year in the United States. Those who survive may have lifelong health problems. And premature births are on the rise -- up to 30% since 1981.

Today Will is over 17 lbs. He continues to progress through his physical and occupational therapy and he is doing remarkably well considering his early start in life. That is why we are asking you to support us in the March of Dimes WalkAmerica. As we found out, premature birth can happen to any pregnant woman. The March of Dimes is leading the way to find answers by supporting research into the causes of premature birth. We are joining the fight, and so can you.

The money we raise helps fund: -Research into the factors that may trigger preterm labor; -Programs to educate pregnant women to recognize the warning signs of preterm labor; -Tools to help health care providers find better ways to detect women who may be at risk for preterm labor.

To sign up to walk with us in Minneapolis on Sunday, April 30 or to sponsor us for this year's walk with a donation, we ask you to please visit our webpage: http://www.walkamerica.org/dexheimer21 Thank you for your continued support in 2006!

Saturday, March 25, 2006
The last month has been pretty busy. Will came down with what doctors believe is called the “Rota Virus”. This caused him to not eat and he became very dehydrated. We took him to the ER at Children’s Hospital and they admitted him for 2 day so they could monitor his situation as well as get fluids into him via IV’s. Mommy stayed with him over night and Daddy and Ethan came up to visit him. The nurses fed him a few popsicles and he just loved them. At least it allowed him to get fluids into his system.

As a result of his sickness, Will ended up losing 1 lb., which is about 8% of his entire body weight. It is amazing what an impact a small virus can have on Will who has a very low immune system.

Sunday, April 30, 2006
Well – we walked today for the 2006 WalkAmerica event to help the March of Dimes raise money for their Prematurity campaign. The weather: 50 degrees and pouring rain! Although the weather was not on our side, we would like to thank those 20 of our very close family and friends who braved the elements and walked the entire 5 miles with us! Words cannot describe how good it made us feel to have you there walking with us and supporting us even in the miserable conditions. Considering the rain, the turnout for the walk was remarkably surprising. In addition, our team raised over $4,000. (We will update this total once the MOD confirms the actual amount we raised) Thanks to all of you who generously made a donation in honor of Will. We really appreciate your support. One of the highlights of the walk was when Ethan met CRUNCH the Timberwolves mascot at the finish line and gave him a high five!

Will continues to regain his health however, the last virus sure took a lot out of him. It really has had an impact on his balance and equilibrium. His walking ability was also impacted and he seems to have taken a few steps back with his ability to walk. He has gained back the 1 lb. he lost during the week he was sick so he is back up to 18 lbs.

Sunday, May 7, 2006
We are pleased to report that our 2nd annual charity golf outing in Sheboygan was a huge success. This year we had 31 golfers for our 9 hole tournament and we had much better weather than last year. After the golf tourney, we held a raffle for all those who participated in the event. We received some wonderful prizes for our raffle including an autographed football from the 2005 Green Bay Packers team and coaching staff, Bucks tickets, Brewers tickets, Badger Tickets and a Miller Beer Golf and Grill package. This year’s event raised over $1,400 for the March of Dimes! That is truly amazing! Congratulations to Andrea Miller who shot a 38 – and she was presented with the Lavender Jacket. Thanks to Ron and Sue Dexheimer for all of their help in making the event a huge success. In addition, a huge Thank you to the following event partners who made a donation for our raffle:

Guy Miller & Town and Country Golf Course, Miller Brewing, Starbucks, Western Golf, Charcoal Inn, Bemis, Cold Stone, Arabella’s, Jakes Liquor, Triple Play Fun Zone, Cousins Subs, Superior Liquor, Kohler Co., Harry’s Diner, Sandee’s Bar, Jason Laux, Kwik Trip, SkyBox, Vreeke’s Bar, Gosse’s, Nancy Thomas, Manning's Irish Pub, Blue Harbor, Nino’s, El Camino, Al & Al’s, Miesfelds, Thrivent, Old Wisconsin, Manning Kilton, Vollrath Co.

We want to make next year’s event even larger so if you know of others who may be interested in playing, please forward their contact information to us so we can include them on the invite list.

The trip to Sheboygan in the car was a big milestone for Will: we finally turned him forward in his car seat! The general rule of thumb is that a child needs to be over 20 lbs., but his doctor was confident that at 19lbs, we could finally allow him to face forwards, which made for a much happier Will during the 6-hour trip!

Friday, May 19, 2006
Will had a NICU follow up appointment this week. The doctor was very pleased with his progress. He now weighs 19 lbs. 4 oz (which is still less than 3% on the scale for his age when adjusted), which is great for him – however he is still a peanut! He continues to be behind with his fine and gross motor skills, which is a very common problem with micro preemies. However, the specialist noted that he continues to make up ground and over time, they are confident that he will continue to close the gap on these skills when compared to babies of his adjusted age.

Will’s physical therapy visits have also decreased in frequency and his occupational therapy is now focusing on having him stack blocks as well as try to feed himself. One of the comments that his OT made was that part of his frustrations around eating possibly relate to the fact that he wants to be independent and feed himself while at the same time he has a very difficult time doing it effectively. Her advice is to continue to allow him to feed himself while encouraging him and praising him for attempting and being successful. Small baby steps; which is consistent with his story from the very beginning! Will is now also starting speech therapy 1-2 times per month as he now needs to concentrate more on forming words and attempting to talk. Speech therapy is another normal step that follows the birth of a preemie.

On another note, Ethan graduated from his pre-school this week and he is excited to have the summer off to play with our new neighbor boys. This weekend Mommy is enjoying a much deserved long weekend with her friend Jen in Arizona while Daddy is having a “boys” weekend at home! Hard to believe we are closing in on Will’s birthday in July!

Wednesday, July 19, 2006
From 24 weeks to 24 months, we sure have been blessed with a miracle. Happy 2nd Birthday Will! It is amazing to think that today William turns 2 years old. We remember when he was born like it was yesterday. We are very happy, however, to be where we are currently at as opposed to where we were on this day in 2004. What an amazing journey it has been.

We had quite a busy day today. Daddy took the day off from work and he and Mommy took Will to his pediatrician for his 2-year appointment. Will is now 31 inches long and he weighs 19 lbs. 8 oz. He is getting closer to the 20 lb. mark! Although we were a bit surprised by his weight (we actually thought that he would weigh more than that) the Dr. reassured us that he is still gaining overall. He also noted that Will is a very busy guy and that he burns calories just as fast as he intakes them. Overall, the Dr was happy with Will’s progress and assured us that with his continuous Occupational and Speech therapy he will slowly catch up to his peers.

Tonight we went up to North Memorial hospital as a family and took flowers and a birthday cake to share with the nurses. Grandma Dex was in town so she joined us as well! It was great to see the nurse’s wonderful smiling faces; they were very excited to see Will and how well he is doing. Everyone who sees him is just amazed that he started out so small. Even Ethan the proud big brother had a fun time seeing some of the nurses that we got to know so well during Will’s 112 day hospital stay.

Today we received a newsletter from the March of Dimes and our team Strong Will Dex was the 2nd highest money raiser for the entire Greater Twin Cities March of Dimes walk this spring. That is wonderful news and once again thanks you all for your support. We could not have done so well without you!

What a difference two years can make. We are truly blessed to have two wonderful boys as well as great family and friends. We hope you all are having a great summer!