Tuesday, January 29, 2013

Decompression Surgery

This was taken this morning right before she went into surgery. It feels like three days ago! It has been a stressful day, to say the least, but she is doing good so far. The surgery was longer than the others, so that was probably what was stressing us out the most. On one hand, I know Hadley is only 9 months old and won't remember any of this, which is comforting, but on the other it just hurts not to be able to explain it to her. The other hard part is not being able to hold her. She has to lay flat for 3 days I believe..? I think this is the most crucial part of the surgery. It's very important not to move her, so that she and the graph heal like they are supposed to. The problem is,  you just want to hold and comfort her. Luckily the motrin and tylenol is helping to ease the pain. One very positive thing is the incredible amounts of formula she is consuming! I think the nurses are amazed at how much she has put down after having such a big surgery. They tried to just giver her clear liquids for awhile but she was not hearing that!

We are in the ICU for the night and should move to a regular room tomorrow. I will say, staying in the ICU has it's perks. The nurses are changing all her diapers....I could get used to this! She is now sleeping and I think I will too. Hopefully we can get through the night without too much discomfort. Thanks for all the lovely prayers and messages sent our way today. We are truly blessed.  

Hadley and her Boo-Boo's

I have obviously been watching too much Doc McStuffins! (the big ole book of boo boos!Thanks to Disney Jr. 24/7) I thought it would be good to give a rundown of her diagnosis's to date so you can see how we got to the decompression. Hadley was born with Myelomeningocele Spina Bifida. SB has 3 different types, occulta, meningocele, and myelomeningocele. Myelo being the worst case, where the spinal cord and nerves are actually exposed through the opening. Her opening was at the S3-S5, or sacral. That is basically the lowest you can get which typically you have a great outcome with that. But the funny thing about Spina Bifida is you truly do not know what you are going to get or why. It's a whole bunch of wait and see and it is often refered to as the snowflake defect because no two cases are alike. You are constantly learning, at least this first year that has been the case with us. Along with SB she was born with Hydrocephalus (water on the brain), which is very common with SB, I think about 85% of the cases to turn into severe cases requiring a shunt. Alot of times when the closure surgery is performed, within 24 hours of birth, the hydrocephelus will change. Most surgeons like to wait and see because you do have that chance of it getting better. Hadley's shunt was placed when she was 19 days old. Hers was more of a gradual increase but it did get to the point of needing a shunt. She has also had 2 revisions to date. And they were back to back but we are going on 7 months of no issues so we are very grateful for that. Right around the time of the revisions she also had hip dysplacia. She wore a harness for a little over 6 weeks.


I know it looks painful but in true Hadley fashion it did not bother her in the slightest. And it was worth it because follow up xrays have shown that her hips are staying in place. After her harness was removed she was really set back though. She was braced in that position so she was not having to work at all. We ramped up the physical therapy at that point. Which we were seeing progress but very slow progress. Also during this time we started seeing a Ophthalmologist for her eyes, they were remaining crossed. She was diagnosed with Strabismus in both eyes and we started scheduling that surgery. Which we did have at the very first of this year and as far as surgeries go (and we have had our fair share) that one was fairly easy and quick. I think we arrived at 7am and were home at 11am same day! The cover picture was taken before her surgery and I haven't really gotten a great picture after yet. (If you know me you would know I am not skilled in photography) Obviously that was done by a professional and I just love it. So back to the boo-boo's we are pretty much up to the syrnix. I said before she was just not progressing if at all in some areas you would think she would be by now. Mainly her head control, she is still pretty wobbly and cannot maintain her head upright for long periods. Her right side is noticably weaker than the left also. When we saw the neurosurgeon in early December he was concerned and scheduled the MRI. Which brings us to today and the decompression surgery.

Friday, January 25, 2013

The beginning

So, here we go...I am so not a writer, but Sean and I thought this would be a good way to keep everyone in the loop with Hadley's progress. We have also found great benefit and comfort in many other blogs we have discovered dealing with Spina Bifida. You can read all the articles and definitions, but reading about someone else's personal experiences has helped a great deal.

I will briefly start at the beginning to catch everyone up to speed. We were in our "gender" ultrasound (19 weeks) where the ultrasound tech told us we were having a girl! (our 2nd!) and then got oddly quiet and took a ton of pictures of the brain and then told us we should go to the waiting room. And we waited for a long time. Next thing we knew we were in back in the ultrasound room and in walks a Dr. who we have never met and says he needs to double check on some things. He performs the ultrasound again and tells us our baby has a birth defect called Spina Bifida. Oh and by the way she also has Chiari Malformation II. We need to do an amnio and I can do it right now or you guys go have lunch and think it over and call me. Yeah, that was not a good day. Needless to say the amnio was performed and he was right on the money on all accounts.

Fast forward to April 23rd. Hadley's Birthday! It was a very stressful day to say the least. The plan was that she would be delivered via c-section and then would be taken to NICU to check her out and within the hour be transported to Children's Hospital to their NICU where the neurosurgeon would do his eval and then schedule the closure surgery. Thankfully everything went according to plan. But still very stressful and very emotional. Both my girls were delivered c-section so at least I had experience with that. With Hadley it seemed there were about 20 more people in the room she was taken and they had to cover the opening along with giving her oxygen.

They brought her over to me but she was on her belly and I was not even close. But I did see her! They left and Sean went with and I was taken to recovery. By myself. Yes, that is my pity party. If I could ever offer advice on anyone preparing for this it would be to insist that someone else be allowed back to the recovery room besides the husband. Here I was by myself, just had a baby, and Sean was with the baby and I was just laying there. Luckily Sean and Hadley were brought down to me before they left for Childrens.


So Hadley and Sean went to Children's and they determined that her closure surgery would be at 7am the next morning. It was about 3 or 4 pm at this point. Sean spent the night taking family back and forth to Hadley and me. I was so thankful we were right across the street.

Hadley's surgery was the next day and they also let me "out" for a few very painful hours to go across the street to see her.


This was just after the surgery and she did really good in the NICU.

This was the first day I got to actually hold her, on a pillow. She was 3 days old.




We were there for a total of 9 days. No shunt when we left but her head was borderline the whole time.
Her first Wagon ride! 9 days old!

She had her shunt placed a little over a week later and then we were able to be home and enjoy the newborn stage. If you know us you know our first child, Rylee did not sleep a wink and at 4 now it is still questionable. Hadley on the other hand was sleeping through the night at 8 weeks. I was actually keeping her up because that is what I was used to and suddenly I realized she wants to sleep. So pretty much from 8 weeks bedtime is a firm 7pm and wake up is 6-7ish. I cannot complain!

Syrnix Discovery

So we found out through a MRI that Hadley has a fairly large Syrnix. It is actually called Syringomyelia...yeah I cannot pronounce it either. I think I will stick with Syrnix, much easier. Anyway, it is a fluid filled cyst in the spinal cord. If I was tech savy enough to put her MRI pictures up it might help but since I'm not the syrnix begins at her shoulders and runs down just below her chest in the spinal cord. How does this happen? Well Hadley has Chiari Malformation II and this is something that is very common with Myleo SB babies. It is basically the downard decent of the brain tonsils (my word, not the scientific one :)) and this can block the flow of cerebrospinal fluid and in Hadley's case create a large syrnix. The syrnix cannot be removed but the goal is to reduce the size of it and this is done through a chiari decompression surgery. It sounds scary and it pretty much is to us. To Neuro folks who see it daily, probably not so much. So I will try and explain the decompression surgery which is going to be taking place very soon. They go in and remove part of the vertebrae to relieve pressure. Then they have to create a graph to cover the opened bottom part of the brain. Our neurosurgeon literally drew this entire procedure out on the paper that covers the exam table! I wish I would have taken that with me, even though I would have not been able to figure it out now. He was very good at calming us down and we trust him completely as this with be his 4th surgery on our daughter (closure, shunt, shunt revision, and now decompression) who by the way will be 9 months old this week! We are hoping to see some positive things from this surgery, as all surgeries, but in Hadley's case she is very weak, diagnosed Hypotonia, and he thinks this is contributing to alot of those issues, especially in the upper torso area.

More to come in the next few days as we prepare for this surgery.