Friday, November 11, 2011

Bennett turns 5 months old

We had a big month: Halloween, Bennett's Baptism, and lots of fall fun! We also had an appointment with the neurosurgeon.
Halloween was fun with our little bear and baby bear! Bennett wore Matthew's first Halloween costume, a polar bear outfit. Matthew wanted to be a bear like his brother, so we ended up with two bears! Bennett enjoyed watching all the kids. He was so alert and happy the whole evening! Matthew loved going house-to-house and handing out candy at home. He did have trouble understanding that some houses give things other than candy. He received a pencil at one house and did not know what to do, so he threw it on the ground and started running to the next house looking for candy. It's hard to be a two-year-old! We all had a fun time!
Bennett was Baptized Sunday, November 6th. It went really well, especially compared to our experience with Matthew's screamfest Baptism. Bennett slept right through the whole ceremony! We had a good time celebrating at our house afterward and seeing the whole family.
We had a check-up with the neurosurgeon November 9th. She said that Bennett has healed up nicely, and looks good! She didn't even recognize him because he has grown so much in the past couple of months! She thought his movement looked good, the only trouble being his ankles pulling upward more than down. She still thinks he will be fine walking. His head has grown a little bit above his curve, so she ordered a CT scan to check the fluid and shunt. It came back fine, just a little extra fluid around the outside of his brain. She just wants to keep an eye on it and see him again in February. Overall, he's doing great!

Saturday, October 8, 2011

4 Month Pictures

Bennett is now four months old! He continues to amaze us every day!
Just wanted to add some pictures:

We had a lot of fun at the pumpkin patch today!

Saturday, October 1, 2011

First Clinic

We attended Bennett's first Myelomenigocele (his form of spina bifida) clinic at Riley on September 27th. It was a long day, but we were happy with how the appointments and testing went. We arrived at 11:00am for a renal ultrasound and pelvic x-ray. Clinic started at 1:00pm, but we were not called in until about 1:45pm. Bennett weighed in at 16 pounds and measured 25.5 inches, our big boy! (He will be 4 months old on October 7th.) We were seen by someone from the neuro team, not our actual neurosurgeon. She checked Bennett's head and thought his soft spot felt okay, and his shunt seems to be functioning well! We will see our neurosurgeon for a checkup again next month. Next, we met the Developmental Pediatrician, Dr. Brei, who happens to have spina bifida himself. He thought Bennett's leg movement was amazing! He even said that we did not need to meet with Orthopedics because there was nothing he would need at this point for his legs! We will meet them at his six month appointment, and hopefully we won't really need them then either. Dr. Brei spent a lot of time with us answering all of our questions and making sure we felt comfortable. It was great to meet him, and very informative! We left with a prescription for a new diaper rash antibiotic cream. Hopefully we will finally be able to get this under control! He's been battling a diaper rash since birth. After our meeting, we were sent to the Urologist for Bennett's bladder/kidney test called VCUG. Bennett started getting worn out at this point and cried for a few minutes. This was his only breakdown of the day. He was such a trooper! The testing went well, and the urologist said that there is still no reflux into the kidneys and we do not need to do anything at this point! We will repeat the VCUG in a couple months, but this is great news for now! We are so thankful that our little Bennett is getting good news and we pray it continues!

Wednesday, September 7, 2011

3 Months Old!

Baby Bennett is 3 months old! He's doing great! He's reaching for toys and starting to grab them. He loves his paci and little blanket. And he loves his big brother! Matthew loves to take care of Bennett. The pictures below are from yesterday. Bennett's hat would slide over his eyes and Matthew would make sure that he fixed it each time so Bennett could see. He makes sure that Bennett is included when we talk about going anywhere. He always wants Bennett around! He also makes sure to hug and kiss him every night before bed!

Bennett has his first clinic coming up later in September where he will see the Riley specialists. We have not had many appointments in the past month, and it has been great! The only things that we have had are his 2 month vaccines at the pediatrician and First Steps physical therapy once per week. It's really been helping him strengthen and also loosen up where his muscles have been tight. He's getting better at lifting his head for tummy time and control while in a sitting position. He's hitting his milestones and growing like he should! So it's all good news this month!

Monday, August 8, 2011

Two Months Old and Good News!

Bennett turned two months old this weekend! We can't believe he's already two months, but we also feel like he's been in our lives for a long time. He's smiling now, cooing, and is sleeping well at night. He goes to sleep around 8pm and wakes up at about 2am to eat, and gets up at around 6am. Matthew is still taking great care of his baby brother, and now loves to give baby a paci and always says "I'm going to check on Bennett....Bennett's doing okay!".

Last week was our big week for doctor appointments, and we had all good news! The sleep study went well. Bennett easily slept for the three hours because he was all swaddled up and was able to sleep the whole time in a crib (the first time was half crib, half car seat). The pulmonologist gave us good news that this sleep study went better than his first! He still had some obstructive breathing, but he improved from last month. We will see the pulmonologist again in six weeks to follow up.

The other appointment we were worried about was with the neurosurgeon. We worried because Bennett's soft spot had changed and was more sunken in than it had been. She was very happy with Bennett's shunt. She said the shunt was draining as it should, and his soft spot is very soft which is good because it is not full of fluid. She also said his healing on his head, back, and stomach were looking great! We do not have to use bandages on his back anymore, and he is now able to have a real bath! The neurosurgeon said that Bennett was her best news of the day, and she doesn't need to see him back for six weeks! We were seeing her every two weeks, so this means he must be doing well! All in all, the week went well and we happily celebrated Bennett's two month birthday!

Sunday, July 31, 2011

First Family Vacation

Call us crazy, but we decided to drive to Myrtle Beach, South Carolina last week with the kids for our first family vacation as a family of four. It was a long 13 hour drive with a 2.5 year old and a 7 week old, but it wasn't as bad as we expected. It was a little difficult to figure out new schedules in a new environment for the week, but we accomplished everything we wanted to do, and had a much needed break from the day to day. And it was fun! We enjoyed the beach, kiddie pool, and lazy river at the resort. We also went to Ripley's Aquarium, the outlet mall, and a carnival down the street from our hotel. Matthew and Bennett did so well during the whole trip, and it was great to have so much time together as a family of four. We just got back last night, and we all feel refreshed and happy to be home!

This week is full of doctor appointments for Bennett. Monday, he has a three hour sleep study. Tuesday, we meet with the pulmonologist about Bennett's sleep apnea. (We haven't had many alarms on the monitor lately, so we are hoping this study gets better results.) Friday, he has another head ultrasound to make sure his shunt is functioning properly, and then we meet with the neurosurgeon. We pray that we get good news this week!

Thursday, July 7, 2011

One Month Old!

Bennett turns one month old today!

Yesterday, we had his one month pediatrician well visit. He is about 21.5 inches, and now weighs 10 pounds! He's growing well and checked out just fine at his appointment! No shots until next month, so it wasn't too painful! The only bad news that we had is that his sleep study results showed that he has mild to moderate sleep apnea. We have another sleep study and pulmonologist appointment in the beginning of August. Until then, we do not know much about what will this means for him. We will just keep him on the sleep monitor and find out more information at our next appointment.

Since we have been home, Bennett has done so well! He is a very content baby and usually cries only if he is uncomfortable or needs something. He is sleeping 3-4 hour stretches at night. He is really alert when he is awake and loves to watch mobiles! He also loves to be held and cuddled. Matthew is doing a great job being a big brother! He loves to kiss, hug, and take pictures with his little brother. He is acting out in other ways, but we are so happy that he is in love with his baby brother!

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!

Friday, May 27, 2011

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!

Tuesday, May 24, 2011

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!

Sunday, March 13, 2011

Riley Hospital Visit

We just had our appointments with the Pediatrician and Neurosurgeon at Riley yesterday, March 11, 2011. We had been looking forward to meeting these doctors because they are so crucial to the health and development of our son. The Neurosurgeon will perform the surgery to close the spinal lesion the same day that Bennett is born. The Developmental Pediatrian will track Bennett's progress and make sure that he is seen by all the appropriate doctors through his childhood years. Bennett will also see the general Pediatrican that Matthew visits for all his vaccinations and measurements.

Our first appointment at Riley was with Lori Lowe, the Nurse Practitioner who coordinates for the Developmental Pediatrician. We met in a room where we will be visiting for clinic days after he is born, every three months for at least the first year. She explained that we should expect a long day for clinic where many doctors come to our room to evaluate Bennett and do any necessary testing. She gave us a packet of information and a book about Spina Bifida. She answered our many questions and gave us an overview of what to expect from children with Spina Bifida. Lastly, we took a tour of the NICU at Riley. It was on the third floor and there were a number of different rooms. We were able to peek in a window to see the incubators lined up against the wall in one of the modules. I am a little worried about how comfortable our NICU visits will be because it looked rather busy and cramped in the rooms. I do feel like Bennett will be in good hands with all the expertise of Riley's Spina Bifida Clinic and all of the Riley doctors. I'm also glad that we have had a little NICU experience under our belts. Matthew visited the NICU right after birth and was monitored for a few days due to aspiration of meconium. We know the general rules and what it feels like to have to go visit baby.

We met with the Neurosurgeon, Dr. Laurie Ackerman, next. She talked to us about how the surgery will go. She also explained possible complications that come with spina bifida in order to prepare us for all possibilities. Some of the possible issues include swallowing problems and sleep apnea, which could be caused by the arnold chiari malformation. Also, the kidneys and bladder will need to be monitored closely because there is usually damage to the nerves in that area. The neurosurgeon also told us that the plan is to have the back closure surgery the afternoon after Bennett is born. She explained that the surgery will be to pull the muscles together and then skin on top of that. She could not give us a timeframe of how long surgery lasts because sometimes they need a plastic surgeon to assist if there is not enough skin to cover the lesion. She confirmed that I will deliver downtown at IU, right next door to Riley. She told us to be prepared for shunt surgery because 90% of children with this form of spina bifida (myelomeningocele) need the shunt, and Bennett already has hydrocephalus. It's possible that the spinal fluid will level off, but not probable. She said that once the back is closed, the fluid usually starts to build up. They will try to hold off on doing the surgery as long as possible if it is needed, usually a couple days before he is released from the hospital. The average stay for spina bifida is 10-14 days.

Before we left Riley Hospital, the neurosurgeon set us up with a consultation appointment with a Urologist. She told us that this would be another important department that we will need to get acquainted with. Almost all children with Spina Bifida have bladder and kidney issues. The nerves in the sacral area of the spine control bladder and kidney function. As soon as we heard this news Andrew remembered that Dr. Rink, a friend of the Neal family, is a Pediatric Urologist at Riley. We asked if we could be referred to him, and luckily we were able to get the appointment set up right away! It is great to know someone who will be working with our son and have a personal connection with our family.

During our meetings, Andrew and I were finally able to ask all of our questions about spina bifida, and it really helped for us to get some information from a knowledgeable source. Overall, I think that the visit to Riley helped us to feel more comfortable with the diagnosis and more prepared for our hospital stay.

Tuesday, March 1, 2011

Fetal or post-natal surgery, that was the question...

Shortly after our diagnosis, we found research about fetal surgery. At first, we dismissed it because it was still considered experimental and the MOMS study had finished all of the cases that they were accepting. The surgery became a serious decision to be made after the study results were published. The results were released when I was 22 weeks pregnant, so our decision had to be made quickly. This in-utero surgery has to be performed before 25 weeks gestation, is only offered in three locations in the US (Philadelphia being the location we would pursue), and has many risks that come along with the benefits. We were feeling torn because deep down, neither of us felt that this was the right thing for our family, but we wanted to do absolutely everything we could to help Bennett. The surgery would require us to stay in Philadelphia for 3-4 months, and much of that time on bed rest. It would be a good thing to have the same doctors looking after you from surgery to delivery, but we were concerned because we would like the doctors in Indianapolis to know Bennett's case from the beginning. In Philadelphia, a support person is also required to be with you at all times. Andrew was worried about his business and all the practical things like bills, care of our house and dogs, and our insurance that already denied the surgery so we would have to work with them to hopefully get it covered, and I was worried about leaving Matthew behind for any period of time. We were both worried about the stress all of this would put on our family, mainly Matthew. These were all things that we knew we could deal with and in the scheme of things, did not seem so bad to sacrifice for a few months. The real things to consider were the benefits of the fetal surgery versus the safety of Bennett and myself. The one thing that we knew was that Philadelphia will not perform the surgery in-utero if the lesion starts low enough on the spine (lesion starting at S2 or below) because they say the risks outweigh the benefits with a low lesion. The doctors told us that Bennett's lesion was sacral, so we had hope that it would be low enough to have a better prognosis with the post-natal surgery. The concern for me was that we know that Bennett has arnold chiari malformation and hydrocephalus, both commonly found with spina bifida. This made me very interested in the surgery if it could stop any more buildup of fluid in his brain. Also, I have read about many instances where the lesion location was not accurately portrayed by the ultrasound, so we would be very upset if we found eventually that his lesion was higher on the spine than expected. The benefits of the fetal surgery, as I understand, are that the damage to nerves may be stopped with the surgery. Any damage that has been done will not change, but the amniotic fluid flowing through the lesion causes damage throughout the pregnancy and that could be stopped early. This may give the baby a better chance of having more use of legs and lessens the likelihood of needing a shunt after birth. On the downside, it's basically guaranteed that you will have a premature baby if you do the surgery, with the average birth at 34 weeks. It's also a major stress on my body because I have already had one c-section, and this surgery plus delivery would account for two more.

We researched all of the study results and talked to our doctors, along with speaking to the doctors in Philadelphia. Eventually, we decided that we should at least go to Philadelphia for the consultation to see if we even qualify for the surgery. We set up a second Level 2 Ultrasound at IU North to see if anything had changed with the baby at 23 weeks. We had the same results as before: a sacral spinal lesion, arnold chiari malformation, and the doctors said mild to moderate hydrocephalus at this point. We had the doctor send the results of the ultrasound to Philadelphia to be looked over. I spoke with the doctor in Philadelphia the next day and my main question was if Bennett's lesion was too low for the surgery. St. Vincent's MFM was the location of our first ultrasound, and they concluded that the lesion was around S2-S3. The second ultrasound was at IU North and they agreed that the lesion was mid-sacral. The doctor in Philadelphia restated that they would not perform the surgery if the lesion started below S1. She said that we were welcome to go to Philadelphia for a consultation, but that they would determine lesion level by ultrasound as well. We decided that we felt confident enough that two MFM departments found the same results, and this doctor was looking at the u/s results as well and not saying that she thought it could be incorrect. As soon as we made the decision, our family stress level went down and we felt so much better. We have set up our appointments with the Riley Neurosurgeon and Developmental Pediatric area at Riley. We are still seeing our regular OBGYN and have met the high risk doctor who will be delivering Bennett. Right now, it's just a waiting game and I'm hoping that our future appointments will help us to feel more comfortable with the post-natal surgery or surgeries that Bennett will endure. Overall, we feel that we have made the best decision for our family with our current knowledge and information.

The Big Ultrasound

We went in for our routine ultrasound when baby was almost 19 weeks along. We found out the great, but surprising news that we are having a second boy! I was convinced it was a girl because this pregnancy has been so different than my first. I was shocked at first, but quickly Andrew pointed out all of the fun things about having two boys! I realized how exciting it would be for Andrew and Matthew, and I also was happy when I thought about how bonded Matthew and I have been since he was born! Another boy is a perfect addition to our family!

After the ultrasound, we met with the doctor. She surprised us with news that there were some problems found with the baby. We heard something about a spot on the spine, fluid on the brain, and a calcification in the heart. The doctor told us that she wanted a level 2 ultrasound and sent us on our way to the Maternal Fetal Medicine office immediately. Our thoughts were all over the place and we were devastated by the news that something was wrong with our baby. We had no idea what was wrong or the severity of the problems, and we didn't know if the baby was even going to survive. At MFM, we had a lengthy ultrasound. I remember asking the technician if she saw all the problems they mentioned. When she told me yes, I asked if she knew what it meant. She mentioned that it could be Spina Bifida. As I heard the words, I knew right away that it sounded familiar. I had no idea what it could mean for our baby, but I knew I had heard it was bad, really bad. The doctor explained the condition as best she could, but it all sounded so somber and frightening. She recommended we have an amniocentesis in order to rule out any other chromosomal abnormalities. We decided to have it done right away. It was not quite as scary as I had imagined, and I was so glad that I had less than 10 minutes to mentally prepare for it. It was another frightening prospect that there could be even more wrong with our child, but I wanted to be prepared for what we would be dealing with. When we left to go home, I was still clueless about what we were up against and Andrew and I were both an emotional mess.

For the next week, I researched constantly. I did not google "spina bifida" because I was afraid of the horrifying descriptions I might find about the condition. I did however look at blogs and try to find information from parents of children living with the condition. It was a very uplifting experience to find such positive and valuable wisdom from these families. It kept me hoping for the best, which was especially important during my 7-10 day amnio results wait. We finally got the call that all chromosomes looked good! I was so thankful that we would "only" be dealing with spina bifida. After that first week ended, I felt confident that we would get through whatever this will mean for our family. I even started desperately looking for a name so we could bond with our boy as much as possible and call him by name. Our baby is going to be another child in our family, and he will just come with a few extra care instructions. I am trying to take it all day by day, knowing that some days will be difficult and others will be amazing. And we will try to appreciate the amazing days even more. Andrew and I both liked the name Ben, so we decided to name our baby Bennett, meaning "little blessed one".