Saturday, June 18, 2011

We're home!

We were finally discharged from the hospital yesterday(Friday) at 5:00pm! We were supposed to arrive at the hospital in the morning, but when I called the NICU, the nurse told me that they were unable to complete Bennett's sleep apnea testing because they could not get a machine in time. This delayed his carseat challenge because they wanted to do the apnea testing first. I was really upset by this news because I had hit the point that I really felt I needed him home right away! After a few phone calls, they found out that another machine would not be available until Monday, but they could send Bennett home on a monitor if we would come back to do outpatient sleep apnea testing. I quickly agreed, but that meant that Andrew and I had to attend a class later in the day to learn about the monitor and infant CPR. We decided that we would do anything if it meant we could leave the hospital with our baby. I felt that with a monitor, I would not worry quite as much while he was sleeping, so I wasn't too opposed to the idea. On my way to the hospital, I got another call from the nurse. She said they could not start the carseat challenge because our carseat was not working properly. They wanted me to bring the manual so we could figure out what was wrong. I decided to stop at Babies R Us and just buy a new carseat to get the process moving. It turns out that a button on our old carseat was broken, so it's a good thing I opted to buy a new one! We arrived at the hospital at noon and spent the next five hours listening to discharge instructions, filling prescriptions, taking the monitor class, and setting up future appointments. It was a long day with a few setbacks, but we luckily were able to bring Bennett home! We were so happy to be home last night as a complete family! We had dinner together and watched a movie. Matthew was a great helper with baby Bennett and seemed a little overwhelmed, but definately happy that his brother was home. Bennett did well during the night, although his monitor alarmed many times because it was not sticking well to his skin. I was up at least 20 times trying to restick the censors! He did have a great 3.5 hour stretch of sleep from 4-7:30am that I was really thankful for!

Today was great! First, I took both boys to a bridal shower while Andrew got some work done at the office. After the shower, Andrew helped out with Matthew a lot. He even took him to Toys R Us and bought him a special new sand/water table. Matthew was so happy and played for hours--until we had to drag him to the bath to get ready for bed! Bennett slept a lot and was mostly content when he was awake. The times he was upset seemed to be mostly at diaper changes. I can't blame him with the surgeries he has been through. His back dressing needs to be changed when it is dirty, which is often. His skin is so sensitive and gets so red when you change the dressing. His stomach incision is still covered and his umbilical cord hasn't fallen off yet, so it takes a while to fold the diaper properly in front and back. Also, he has a powder, non-stick barrier, and diaper rash cream that needs to be applied to protect his bottom from the constant bm's. And, his circumcision is still healing. Poor guy has been through so much! Even so, he doesn't show that he's upset too often. He's such a sweet and strong baby! We're so happy to have him home!

Wednesday, June 15, 2011

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!

Monday, June 13, 2011

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!

Saturday, June 11, 2011

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.

Friday, June 10, 2011

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.

Tuesday, June 7, 2011

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!