I got a good question from my Sister in Law Micah. She wanted to know what happens after Charlotte arrives. Well that question is kind of hard to answer with a case like Spina Bifida.
Things that could be something we have to worry about
1. Hydrocephalus - Water on the brain- this is what we hope won't happen because of having surgery early but still could be an issue.
1.a This they will watch for while she's in the NICU for the first 2 weeks. See if she's eating and breathing fine on her own and if she is irritable or not. those things can be the need of a shunt.
2. bowel/ bladder problems - in the NICU they will Cathe Charlotte for the first 48 hours and then stop. We will learn how to do it as we may have to cathe her for the rest of her life. After she is discharged from the hospital we will have a Urology appointment to find out what her bladder looks like and see if cathing is actually necessary.
3. Mobilization - She may or may not be partially paralyzed from the point of her lesion down. We won't know her mobility until she is older.
4. Latex allergy - No more balloons for us. She has a higher chance of having a latex allergy so all doctor visits have to be latex free.
5. Arnold Chiari Malformation - This one is also hoped to be reversed because of the surgery. This is when the brain is actually being sucked down the spinal column therefore causing the hydrocephalus. If this is bad I've been told she will have to have surgery to release the pressure in her head.
But all those things are things we can't assume will or will not happen. That is why so many moms of kids with SB say that the pregnancy is the worst because of all the unknowns. But that once your little baby arrives all that seems to just be something that you do. You still have a little baby that needs lots of love and kisses and will enjoy everything another baby would enjoy.
I feel so at peace about this little angel coming to our home that I know that the bad things that could happen won't. I just hope we can make it to the 37 week mark for her benefit.
So time line for any one interested.
1. 37 weeks exactly is April 22nd
2. I will be in the hospital for 4 days because of the C-Section
3. Charlotte will be in the NICU for 2 weeks for monitoring and such to be sure she won't need any further care before we come home. She has to be 14 days old to fly home anyway.
4. the Day after we're discharged we have the urology appointment
5. depending on the time of that appt we come home that day or the next morning!
So max baring no other complications we come home May 10th!!!
Micah I hope that answered your questions or maybe I gave to much info. anyway that is what we can expect might happen.
SO MANY UNKNOWNS!!