A Quick Summary

Excuse the length of this post, but this sums up a week in the hospital...

Abby was born at 12:40 am on March 14, 2016. She was transferred to the NICU before heading to Primary Children's via the sky bridge. We did get a chance to see her briefly before she left with the life flight team around 2:00 am. Rhett and my dad followed her over to be sure she settled well into the Infant Care Unit.

Spina bifida refers to a spinal cord defect where the spinal column does not form completely around the spinal cord. Her nerves were free and contained in a sort of sac, exposed to amniotic fluid. These nerves are damaged and potentially affect the bladder, bowel, and legs. There are also a variety of other accompanying complications that I'll include as they play into her life. When she was born, her sac was around 4 cm in size, much smaller than expected. Although her left foot is clubbed, both legs were moving well. The doctors were very happy with the strength she had in her legs (especially in the hips and knees) - above the ankles she has the expected strength of a newborn. Her head was also in better shape than we had expected it to be.

The first big step for her was to have her back repaired. She went in around 2:00 pm on the 14th for a 3 hour surgery. The neurosurgeon closed the hole over her spinal cord and a plastic surgeon followed. He pulled her back muscles over the area and then pulled her skin from her front and sides in order to fully close the area. We expected her to have trouble breathing and remain on a ventilator, even needing a short stay in NICU after surgery. However, she was taken right back to her room and her oxygen was at 100%. Surprisingly, they let Rhett and me hold her right after that. She was placed on a pillow on our laps and we got to hold her for a few minutes. Definitely a great surprise! After surgery she was finally able to eat - something I think she was happy about.

On the 15th we learned that the plastic surgeon wanted her to stay for 4 weeks at Primary's. We were planning on about a week, so it was a bit surprising to say the least. Now we've come to terms with that and would actually love for her to be monitored for that long. She has to stay on her stomach for that entire time, so we've been learning how to change diapers upside down (yes, there is a "mud flap" to prevent poop from getting in the incision/stitches), feeding has quite the learning curve, and burping her is tricky as well. Definitely best to have her in the hospital during this time, although sometimes we wish we could just take her home.

I was released on Wednesday morning, which made it much easier to see Abby more frequently (meaning we spend all day in her room). While the plastic surgeon insists she stay in the hospital for the full 4 weeks, he is outnumbered by the pediatrician, neurosurgeons, and Spina Bifida Clinic director. They were anticipating her discharge for last Saturday. And then for tomorrow. He's rather opinionated though and is pushing hard against them - fine by us. I wish I could be a fly on the wall during their conversations.

She completed a three day bladder test (Friday through Sunday) to see if she would need to be catheterized when she comes home with us. She was catheterized every 6 hours for 24 hours, then every 8, then every 12. And she passed the test! Along with this, she had an ultrasound on her kidneys and bladder on the 18th to see if the bladder was fully emptying and doing its job. Thankfully it's all functioning as it needs to and she won't need to be catheterized with us for now. They will continue to monitor this closely and they'll test her again at 3 months. As a side note, both Rhett and I know how to straight catheter her. And it's a joy that we're okay to postpone, hopefully for a long time.

Along with the kidney/bladder ultrasound, she had an ultrasound on her brain to see what her ventricles were up to. They are larger than normal - something we already knew - and the neurosurgeon was debating about her need for a shunt in her brain. He expected her to need one eventually, but isn't sure that she needs one now. Her head circumference increased a bit day by day but also had a few days of stability. The shunt would allow her to be able to regulate the cerebrospinal fluid in her brain by draining the fluid into her abdomen. She has hydrocephalus, which basically means all the fluid in the brain is just getting backed up, causing her head to swell along with it.

On the 19th we were told that we would be discharged on Wednesday. Also, we were informed that the plastic surgeon would take out half her stitches on Monday and reassess her before she came home to be sure she was ready. That day we tested her car seat - more of a car bed that looks like a tiny little cooler. She lays in it on her stomach and it buckles over her back. Kind of cool. We got the nursing thing under control, even though she can't have any pressure on her back. Lots of fun practice, for sure. That afternoon, the plastic surgeon came by and I asked about her stitches coming out on Monday. He firmly said that they won't come out until 3 weeks after her surgery. So, definitely no stitches out on Monday. All of the doctors need to have a giant conference together in order to get their stories straight - something that we've heard will be a lifelong pursuit with having multiple doctors with their hands in the mix.

That same day the neurosurgeon came by and we decided with him to place a shunt. This was a really hard decision to make, but we felt that she would be more comfortable with it. It was scheduled for Sunday morning. By the time the surgery came around, we felt that we needed to postpone it. This is a lifelong thing she'll need to live with and we felt that it was a bit of a rushed decision on our part. 

Abby's head circumference continued to grow, however. She is measuring at just over 38 cm, where she was 35.5 when she was born. We have decided once again with the neurosurgeon to do a shunt placement. We feel at peace with the decision and know it will be best for her. She is scheduled for 10:00 in the morning. Recovery should be fairly simple and hopefully will decrease the amount of discomfort she feels now and in the future. It will reduce the size of her ventricles to a more normal size.

For the last couple of days her oxygen levels have been a little bit lower than where we'd like to see them. She has oxygen boosting her full-time now, on the lowest amount. This has been better, but still not great. We've been told that this may be due mostly to her laying on her stomach all day. Hopefully once she's on her back it will be better.

Overall she is still looking really good. She's been healing extremely well. Her head is very strong and she fights us when we move her head from side to side every couple of hours. She knows how she is most comfortable and will move around as she wants. She's quite comfortable in the warming bed and is getting spoiled with lots of attention. Sometimes she wants to roll over (a little too soon...), but we're just happy she has a lot of strength in her legs!

Here's a general summary of her doctors:

1. Neurosurgeon (his team includes about 4 others): He not only shares all of the pertinent information for every decision we have to make, but he also includes his opinion. He makes sure we are comfortable with the plan of action and is personable.

2. Plastic surgeon (he has another assistant as well): He is very knowledgeable in his area. He fights for what he knows to be right and has some of the top results with this surgery. He is not afraid to speak his mind and we agree with his perspective (something he may not be entirely used to). He knows how to get the best healing results.

3. Pediatrics (this group has an attending physician, resident, and about 5 third-year medical students - one of which is assigned to our case specifically): We call this group the "gaggle" as they visit us every morning and roam the halls discussing each case. They talk about each aspect of her situation and give us a nice summary when they visit us.

4. Physical therapist: She is very nice and has given us great exercises to help her brain be aware of her legs/feet and their sensitivity.

5. Director of the Spina Bifida Clinic: She has pediatric experience and is familiar with the overall spina bifida pathway. She's great to give us her opinion as well as what she's seen work with other children in the same boat. She's been a great resource as we try to figure out what spina bifida means for us.

6. Orthopedics: They will monitor her clubbed foot and proceed with casting as needed.

7. Audiology: She passed her hearing test and should be fine. However, they'll test her again after 12 months to be sure complications don't arise.

Needless to say, we've got people popping in all the time (not to mention the nurses who take amazing care of her) just to be sure she's progressing well. We've enjoyed all of our interactions with them and are glad she's in such good hands.

We sure do love our little munchkin and are excited to be on this journey with her!