I cannot believe it. I made it thought 2 major doctor appointments today without any tears! I stayed calm and Sam and I asked about a million questions. We had a great first experience at Childrens Hospital.
I will start with out first appointment. We started off with an ultrasound. The did a full scan of every part of the baby. After that we met with a new doctor. We really liked her and the genetic counselor working with her. She kinda reconfirmed things we already knew. High AFP levels, an obvious opening on the spine, and no genetic problems found. I was pretty much holding my breathe, waiting to hear what section the opening was on. This number gives you a more clear outlook on the babys functions (or loss of). She told us the opening was on the L5. This is good news. It's on the very lower part of the spine. We could even see it in the ultrasound. A lot of kids born with an L5 opening go on to walk unassisted, or sometimes with the use of braces or crutches. She may also have a slight limp. She cannot 100% guarantee any outcome but she said that this is a very good number. Also, things like bladder/bowel control will most likely be affected but the extent is not known until she is born.
We also are for sure delivering in Seattle at University of WA by c-section. They would like it to be at 39 weeks but Finn was born at 38 so they might do it then but do an amino to make sure her lungs are 100% developed. They don't want me to go into labor on my own. After she is born they will dress the opening and Sam and I will see her for a bit. Then she will be transported to Childrens by ambulance. If I'm recovering well, Sam plans on riding with her and staying with her as long as he can then coming back and staying with me at the hospital that night. If my c-section recovery is going good, I may be discharged the following night.
Before she is 24 hours old, they will do surgery to close the opening. The next pediatric doctor we met with explained a lot what happens after shes born. The surgery can take up to half a day. After that surgery, within the next couple of days, she will have a shunt put in. It drains excess spinal fluid to the abdomen, which it then is absorbed into the organs. It only takes about a half hour to do the surgery for that. When she is born she will be catheterized and we will be doing it for awhile when shes out of the hospital to see her bladder function. She may outgrow the catheter or may need it forever. There are lots of different options for the management the bodily functions. But a lot of those will not a a big issue till potty training time.
So we are looking at about 2 weeks in Seattle. If her surgeries go well and there is no infection or other issues, we will be able to bring her home by the end of February. We plan on staying at the Ronald McDonald House and spending a lot of time at Childrens, with her. We would also like to be able to see friends and family in the area also.
We will be having monthly ultrasounds to watch the fluid in the brain. Today it didn't look like the fluid had increased but there is still time for it to happen. If the fluid got out of control, I may have to deliver early, but they were very adamant that they didn't want to add prematurity on top of the other problems. We go back there the day before Thanksgiving to have a tour of the hospital, meet with the nurses and surgical staff and schedule the operations.
So I think today was good. Sam and I are feeling really good right now. I know I will feel different after I've given birth and our child if off having surgery. For now we don't feel sorry for ourselves or question "Why us?". We think we were chosen to be Stella Joy's mommy and daddy. Having her in our lives will make us stronger, more compassiante, and all around better people. We hope the same for Roman and Finn. We know she will bring such love to our lives and the lives of our friends and family. We are so lucky to have good health insurance and the best doctors to take care of her. I have hope and faith and know the Lord is watching over us.
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