I can't believe we just went to our very last appointment at FCI! It seems like yesterday we were walking in there more scared than ever and sat through an entire days worth of appointments, crying so much we couldn't think straight and hearing a lot of "I don't knows".
Today was different.
I was strong and we got some answers to questions that we had accepted "I don't know" as the answer to!
We went there thinking we were going to be meeting with Dr. Vlastos again and Dr. Elbaba (the pediatric neurosurgeon). But Dr. Vlastos didn't need to see us again, we weren't sure why we would have seen him 2 days in a row anyways, and Dr. Elbaba wasn't able to be there so we met with his nurse, Rachel.
Rachel is awesome and knows so much. If I couldn't see Elbaba, she is the next best! She was able to answer so many questions for us and we didn't even have to ask them, it was all just part of her speal! So here goes.
Evie's surgery is scheduled for 2pm on May 20th. My c-section is at 10:30 and we all know nothing ever goes on time. This is good and bad. I say bad for selfish reasons because it is mostly wonderful that her surgery is at 2! This means we will probably not have the full 2 hours to bond with her before she is taken from me and transferred to Cardinal Glennon but this means that her back will be closed SO soon and she will be on her road to recovery much sooner than we expected! She will not be able to eat until late in the evening on the 20th or early morning on the 21st. They will attempt to feed her with a bottle; however, since she has to be on her tummy post-surgery for at least 24-48 hours it all depends whether she figures out how to latch on to the bottle while laying on her tummy with her face sideways. If she can't, they will place a feeding tube until she can be on her side or back and at that time I can even attempt to nurse her! This is wonderful news! We had been told that I may not be able to attempt to nurse for up to 2 weeks, now we are talking only 2 days!
Rachel believes I should have the chance to hold Evie for a short period of time before they request she stay on her tummy. We weren't sure if we would be able to hold her, but as of now we can!
After surgery she will stay on her tummy and if her incision is healing well then they will gradually begin to rotate her to her side after 24 hours (longer if needed) and then after a few days on the side she will get to lay on her back. Depending on her recovery we could be out of NICU as soon as a week but may be there more like 2 weeks. It just all depends, but we do have a much better understanding of what indicators to look for to gain an idea on time table for being discharged.
At discharge she will be sent home with a donut shaped insert for her car seat to relieve the pressure on her incision. We had always wondered if we needed a special seat and everyone said "I don't know". Well now we know! The answer is NO! Good thing too because I already got her a seat!
As far as the shunt to help drain the fluid from her brain....Dr. Elbaba likes to wait as long as possible to see if the child can figure out for itself how to accomodate the fluid after the spinal closure surgery. A lot of times babies have shunts implanted when they may not have needed it in the long run. Since babies have such pliable heads no brain damage will occur while we are in the wait and see phase. If Dr. Elbaba determines from MRI and ultrasound that Evie doesn't need a shunt and she is eating and sleeping well then he will discharge her and see her back weekly to keep assessing her ventricles to make sure we don't need to intervene. We love that the doctor is so willing to give the babies a chance instead of doing a brain surgery right away that might not be necessary.
Rachel said she has seen it all different ways. Sometimes the brain actually improves after spine closure surgery, sometimes it gets worse fast and a shunt is needed before discharge and sometimes the child is stable but needs one later. This is one of those wait and sees, but it is nice to know there is a plan of attack. I like plans.
After discharge we will either go to the Neurosurgery clinics on Tuesday mornings or the actual Spina Bifida clinic on Wednesday afternoons. This all just depends on how she is doing and what doctors she needs to see. The clinics are great because doctors of all different practices are in the same place so that we don't have to go running around to see everyone. It is just a day of doctors!
Rachel thinks we should be able to take Evie on a trip to Springfield towards the end of my maternity leave as long as her spine is closing well and her fluid is stable. We will have to stop frequently to get her out and relieve the pressure off her back, but what family can not stop frequently with a one year old and a baby???
Rachel said that our case of Spina Bifida is a great case and that the lesion is low enough to where the prognosis for walking is very good.
After we met with Rachel we met with our nurse, Jenny. She just told us good luck and that many prayers were being sent our way. Another few nurses came in and said that we didn't know them but they felt like they knew us from reading our file and hearing all the wonderful things the other nurses had to say about us. They all asked if we would bring Evie for a visit. It's so crazy how I just met all these people less than 4 months ago, had only 3 appointments and I feel like we have such a bond. God truly placed a lot of wonderful people in our lives!
I feel very prepared after our appointment today. I feel like I have the plan of attack all ready to go from my c-section through surgery and even a few days post-surgery. I feel less like my world is spinning out of control and know that God is slowly revealing his plan to us. I hate being patient, definately not one of my strong suits, but I am thankful that I have made it this far with very little of the plan known!
Thank you all for the continued prayers for our family and our little miracle baby! She is going to be here before we know it!