Hopefully going home Friday!

Andrew and I went to visit Bennett this morning in the NICU. He's doing really well today! I stayed to breastfeed him, which he did really well with again! I'm surprised how well he does because he is given bottles for feedings all day besides the once per day that I am feeding him. I stayed with him today for a while waiting for the doctors to do their rounds. Bennett was sleeping soundly when we arrived, but he was wide awake after I fed him and was so alert and curious! When the doctors came by, they said that Bennett is doing great and is scheduled for discharge on Friday! His shunt series results from yesterday were good, and he is gaining weight again (now he's 7 pounds, 7 ounces). He has another head ultrasound to check the fluid, needs his Hep B vaccine, hearing test, and carseat challenge (90 minutes in the carseat to make sure he can tolerate it). He also needs to be checked out by the myelo team (the type of spina bifida he has is called myelomenigocele). The neurosurgeon will also recheck him to make sure that he is ready to go. The nurse told us that she will be putting his clothes on today and turning off the warmer to make sure that he is able to hold his body temperature. I'm excited to see him in an outfit because he has not worn clothes yet! He will also be put in a crib as soon as one is available. We are happy that he is doing so well and can't wait for him to come home! I do realize, however, that sometimes there are setbacks and he may not leave on his scheduled day, but it is nice that we have a goal now. The doctors want him to see his general pediatrician next week, so we went ahead and scheduled his first well baby visit! Also, his first clinic day is scheduled for September 27th. This is the day that he will go to Riley's spina bifida clinic and see all the doctors such as the neurosurgeon, othopedics, urology, etc. He will attend this clinic every three months for at least the first year. It seems like there are many things to do, but hopefully we can get all of his testing done and meet our goal for discharge Friday!

He's doing so well!

Shunt surgery was today. We arrived at the hospital at 9:30am. My mom stayed in the waiting room with Matthew while I sat with Bennett before he was taken for surgery. The surgery was pushed back until 10:30am. Bennett looked so peaceful sleeping that I was careful not to wake him. I knew he would be hungry if he woke up because he was not able to eat after midnight in order to prepare for the surgery. At about 10:45am, they were ready to take him to the OR.


The great news this morning was that big brother Matthew was able to see his baby brother for the first time! He has not been able to meet him because siblings under 3 years old are not allowed in the NICU. While we walked down the hall on the way to the OR, Matthew was able to see Bennett in the transporting unit. I'm not sure what Matthew thought of this new baby brother, but I'm so glad he finally got to see him!

It was so difficult leaving Bennett at the door of the OR. He's so tiny and I can't believe he has to go through a second surgery at six days old. The neurosurgeon reassured me that he is a strong baby and that he really needed the surgery to prevent any damage to his brain. I knew it had to be done, but it's hard thinking of the risks especially for a six day old baby. The only thing that made me feel better is that I know he did well during his first surgery.

The next two and a half hours were the most difficult and stressful hours of waiting. We received two updates, but I started to worry when the surgery lasted longer than the expected hour and a half. Finally, the neurosurgeon came to the surgery waiting room around 1:30pm and told me that everything went well! I had an overwhelming feeling of relief! Shortly after, we got a call that he was in the recovery room. He was only in the recovery room for about ten minutes before he was moved back to the NICU. My dad and Andrew each arrived shortly after the surgery was over. It was great to see Bennett back in his room sleeping like a perfect little angel. He looked amazing, and the shunt was not as visible as I imagined it would be. He started to stir after a while and even started to open his eyes. But his blood pressure was slightly raised, so they gave him pain medication and he went back to sleep. The doctors said he was doing a great job recovering. I called to check on him tonight at 6:30pm and the nurse said he was still tired, but doing really well. I will be visiting again in the morning, so hopefully he will be feeling better and we can be closer to bringing him home!

Another Surgery Scheduled

Today, my mom took me to the hospital and watched Matthew in the waiting room while I visited Bennett. We had good timing because Dr. Ackerman, the Neurosurgeon, was checking on Bennett just as we arrived. She told me that she noticed that the fluid in his head seemed to be increasing. Luckily, he is not having any symptoms other than than the increasing fluid. There will be another ultrasound tomorrow morning and if it shows what she suspects, then Bennett will have VP shunt surgery Monday morning. This is something that we expected, but it is still hard to accept because he has been doing so well the past few days. We thought he might be one of the few lucky ones to escape this surgery. There will be an incision on the side of his head above his ear, and a second incision on his abdomen. The shunt tubing will travel from his head to his abdomen to drain the extra fluid. It is very hard knowing that he will have another surgery, but it is good that he will be getting it overwith. The shunt can be needed at any time in the future and hopefully having it now will prevent any further problems. We were told that often the shunt can fail within the first two years and revision surgery would then be needed. We pray that the surgery Monday is successful and that Bennett has a quick recovery.

Hospital Stay

The last few days have gone very well! Bennett had an ultrasound on his head to check the size of the ventricles, and they have not gotten larger yet. There is a chance that he may not need to have the shunt surgery! We will have another ultrasound later in the week to check the ventricles again. He will also have a renal ultrasound and testing for bladder and kidney funtion. So far, he does not need to be catheterized and has great output which is a good sign. I was able to hold and breastfeed Bennett for the first time on Thursday. He latched on immediately and is a great eater! It was such a great experience to finally be able to hold him and care for him rather than just look at him in his bed!

Today, I was released from the hospital which was bittersweet. I am happy to go home to Andrew and Matthew, but it is hard to leave Bennett behind. The more time I spend with him, the harder it is to leave his side. We all cannot wait for him to be healthy enough to come home with us! In the meantime, I will visit as often as possible. I want to see him for at least one feeding each day. It is difficult to find someone to take care of Matthew and also to get to the hospital because I am not allowed to drive for about two weeks after my c-section. We just have to take it day by day and do the best we can.

Bennett's Birth

The c-section went as planned and Bennett Andrew Neal was born on June 7, 2011 at 9:19am. It was such a relief to hear him cry as he was pulled out! He was taken out of the room right away, before we even saw him, to be cleaned up. They also wrapped him from the waist down in a clear bag to keep the lesion sterile. After the c-section was over, I was taken to a recovery room. Bennett was wheeled in and Andrew and I were able to spend about 15 minutes with him in his isolet before he was transported to Riley. It was such a great feeling to see him! He was kicking and rooting around on the blanket. He seemed strong and hungry! We were so happy to finally meet him, and we both had a good feeling that he was going to be okay! He measured 7 pounds, 4 ounces, and was 20.5 inches long.


Andrew followed Bennett to Riley, and I stayed in the recovery room with family for about an hour before being moved to my after-delivery room. When I got settled into my after-delivery room, I received a call from the neurosurgeon to get permission to go ahead and start Bennett's surgery. She said the back-closure surgery would last about 2.5-3 hours. We were so nervous, but happy that they were going to get the surgery overwith right away. The surgery started around 12:30pm and I received updates each hour. Luckily, I was on pain medication which helped with my anxiety and caused me to be drowsy during the wait! The updates were that everything was going well, and then the final call that the surgery was a success was so exciting! Andrew and his family visited Bennett that afternoon, and I was able to visit with Christine that evening. It was wonderful news that he was doing perfectly after surgery, recovering so well! The neurosurgeon was also very impressed with his strength in his hips and knees. He has surprised us all with his strength!

A Beautiful Face!

We had our last ultrasound yesterday, May 26th to check on baby's growth. He is 37 weeks and measures about 6 pounds 15 ounces. He should be a good size when he is born! We were finally able to get a good picture of baby Bennett's face! Up until now, he has been shy and always kept his hands over his face. Today, he decided that we could get better acquainted! Andrew and I noticed right away that he looks just like Matthew, chubby cheeks and all! Our feelings of anxiety have been temporarily washed away because we are so in awe of our strong little guy! We showed Matthew the pictures of his brother and he had the biggest smile ever! We think he is getting excited to meet his baby brother, kissing my belly and always asking about Bennett. We can't wait to meet him in person--only a week and a half left!

Two Weeks Until Delivery Day!

My c-section is scheduled for Tuesday, June 7. I will be delivering downtown Indianapolis at IU hospital. Bennett will be transferred next door to Riley for his surgery and NICU stay. We are getting excited and nervous for his arrival. Matthew has been talking about his brother and wants to teach Bennett how to play cars when he gets here. He has been extra clingy to me for the last few weeks, probably sensing that change is coming. I'm starting to worry about how we are going to handle all of the events at the hospital. I am praying that my recovery is quick and easy so that I am able to be present for Andrew, Matthew, and Bennett. We are also praying that Bennett has as little pain and few complications as possible. It is so scary not being able to plan everything and having to put your trust in other people. The only plan we have is to have the c-section done in the morning and hope to be able to see Bennett for a few minutes before he is taken to be prepped for surgery. His surgery is supposed to take place that same afternoon. My parents will be taking care of Matthew the day of the c-section. They will bring him to the hospital and we are going to try to allow him to see his new baby brother before the surgery. It is really important to me that he sees his brother, even if it is very brief, because he will not be allowed to visit the NICU. We have been told that the average stay for spina bifida is 10-14 days. We really want Matthew to see his brother as soon as possible so he starts to understand why we are at the hospital. Dr. Golichowski, who will be delivering Bennett, has told us that if all goes well, we may be able to keep Bennett in our room for a few minutes before he is taken to Riley. Hopefully, all goes smoothly and we are able to have an intimate moment with just Andrew, Matthew, Bennett, and myself. We are prepared for this not to happen, but hopeful that it will work out. Andrew plans to follow Bennett to Riley Hospital next door when he is transported for his surgery. My sister, Christine, plans to stay with my the first day while Andrew is gone. I really hope to feel well enough to visit Bennett the first evening after his surgery. I really want to be able to meet him before anyone other than Andrew visits him. I want to bond with him as soon as possible. Matthew will spend the night with my parents, his Nana and Granddad, the first night. Andrew plans to spend the first night in the hospital, but return home with Matthew the second night so they can get back to some kind of normalcy. I hope that I can join them after 3-4 days. We have a lot of friends and family who have offered to help, so hopefully everything will work out somehow.

Another delivery decision we have made is to save the umbilical cord tissue and blood. It was a difficult decision because there is not a lot of work with spina bifida and cord blood yet. It is an option to save the blood for any child. The cord blood contains stem cells which can be used to regenerate cells or repair tissue. This is currently used for leukemia, cerebral palsy, etc, and other research is also being conducted. There is also a newer option to save umblilical cord tissue, which contains cells closer to embryonic cells. Research is finding that this has healing power for the spinal cord, but this is still in early research stages. We are thinking it would be a good idea to save the cord blood and tissue just in case there is a future breakthrough with spina bifida. At this time, there is not a lot happening with spina bifida and cord blood. I have found studies in India and China, but I think they have both been closed. We do not know what the future will bring, but we think it's a good idea to be prepared in case there is a chance we could help Bennett in some way. The cord blood also works well for siblings if there was any future need for it. We recently found a company called AlphaCord that is affordable. They have banks across the country, including one in Indiana. They are FDA and AABB certified. I have read forums of other parents of children with spina bifida banking cord blood with Alphacord. We decided that it would be a good choice for us. We have signed up and received the collection kit, so we are ready for delivery day.

In the meantime, we have another ultrasound scheduled for May 26th. Hopefully this will be our last! Also, I have one more weekly OB appointment May 31st. I'm starting to feel normal, uncomfortable pregnancy symptoms. It's getting harder to get anything done because I'm feeling really tired. I am also having a lot of heartburn, and in the past week I have had some pressure pains. It's getting close! We're just hoping to make it to the scheduled c-section date!