Paul called me later on Monday from Children’s. He said, “how would you like to bring Claire home for Thanksgiving?” Paul said that the doctors had run some tests, and did an ultrasound, and said that since the skin was covering the lesion that they wouldn’t have to operate for 3 to 6 months. This was a huge surprise, considering we were planing on her operation being that day or the next. He said that she was blowing all of the doctors away, and that she was even mad enough in her ultrasound that she sat up! They couldn’t believe her strength, and her muscle tone! We were so happy! They said she would probably be ready to leave on Wednesday.
I was finally able to get a shower and dress in some normal clothes! The hospital gave me a pass to go visit the baby, however I didn’t go over until after she was done with her tests at around 6:30pm. Mom and Kathryn were at the hospital with me, so Paul brought us all over to Children’s. I was hoping to try to nurse her, but she was so worn out from the MRI she had that day, and the drugs that they gave her, that there was no waking her. Plus, she was hooked up to so many different monitors that I was afraid to hold her. She even had one of those arm braces they put on baby’s arms when they have too many IVs sticking in them. It was so sad. I just kept thinking about what a friend had said to me, “ you’re never really prepared for seeing your child hooked up to machines and IVs.” (John Hobbs) Dr. Maugans, Claire’s Neuro-surgeon, came by around 8pm to tell us the results of the MRI. He said that everything wasn’t exactly as he had originally thought. In the ultrasound the day before it looked as if there were no nerve contents in the lesion, and he was leaning towards her not even having Spina Bifida. However, once they did the MRI they saw the nerves, and also the Arnold Chiari, which confirmed the Mylomenigicele. While this was no knew news to us (since we knew this before she was born), the doctor said that he would want to operate sooner than 3 months. Actually, he wanted to operate the next morning! It was hard to wrap our mind around postponing the surgery, to surgery TOMORROW! Thinking about how it would be an even longer time until I would be able to nurse her, bond with her and take her home, I asked if would could put the surgery off until after Thanksgiving. He said that he was still confident that she would be fine at home since the lesion was covered and that he would be on vacation the week after Thanksgiving. So, if we would want to postpone it for that amount of time, that was fine with him. So, that’s what we decided on. I needed to take my baby home to snuggle with and nurse her. I was really worried that if we waited longer, that she would have a hard time nursing later. We didn’t get back to Good Sam until 10:30pm. I was exhausted and in A LOT of pain! Who knew a 10 min trip across town could do that to you!
WEDNESDAY 25th
Kathryn and Michael show up in the morning with Starbucks- a start to a good day! Paul had to be back over at Children’s at 10:30 for more testing. He came back and got me and my mom (who came over after Kay and Mike left) at 1:30pm. Claire was still in the ultrasound room, cathed, and waiting for an ultrasound of her bladder. We waited for over 30 mins, on top of the hour that the nurse and Claire had already been waiting. The doctor had ordered the scan, but the tech wanted to avoid it, for a bunch of silly reasons. So, after the hour and a half was wasted, and with no ultrasound, we headed back up to the RCNIC. Again I tried to nurse Claire, but she was exhausted and slept. Though, today was the first day I was able to see her eyes! They were blue. The nurses had to train us in CPR, how to lay her in her bed without hurting her back, and how to use the special car seat they lent us. (The car seat is one that she is able to lay on her stomach.) The Physical Therapist told us that Claire’s muscle tone, and her leg movement was REALLY exceptional. She said that her ankles were a little weak, but that we could work on that by stimulating her feet. The PT also said that she expects that Claire will be able to walk. I assumed that she meant with crutches, but she said that she would probably be able to walk without them. She may just need ankle braces. Of course, things might change with the surgery, so we are praying that she doesn’t lose any mobility.*Other GREAT little miracles include:
*Originally we were told (before birth) that Claire would probably have problems with her bowels and bladder. Some children aren’t able to go at all and have to be cathed, and others have no control and go all of the time. With all of my research, it was VERY VERY rare for a child with even the mildest form of spina bifida to not have some issues with their bowels and bladder. It was something like 98% of babies with SB have some sort of issue. The doctor tested her little bum muscles and said that he thought that she would have good control of her bowels. Also, the nurse continued to cath Claire all day one day, to see if there was anything left in her bladder once she had wet her diaper. There was nothing! She has NO TROUBLE dirtying or wetting her diaper, yet still has dry times! Her bowels and bladder are fine!!! What a relief! The doctors and nurses had never seen anything like it.*Claire was not born with Hydrocephalus (Fluid on the brain), and the doctors, for some reason, are predicting that she will never have it. Of course, they cannot say this for sure, because surgery may change things, but this is awesome awesome news! No shunt!
*Claire has Arnold Chiari Type II, where the cerebellum is pulled down into the spinal column. Also, with the MRI, they found a small cyst in the middle of her brain (they originally thought this was fluid) and the lining that is usually between the two hemispheres of the brain is not there. While this sounds alarming (I was alarmed!) They said that they don’t see any problems. They said that people could be walking around like that, who are just fine. It’s just that not every newborn gets an MRI or their head! As for the Arnold Chiari II, affects of this usually are messed up vocal cords, (hers are FINE), trouble swallowing ...(she great at that!), and sleep apnea. She has none of these! We are SO SO SO excited about how well she is doing.
Claire was able to come home Wednesday night, but I was too exhausted to leave, so, because of me she had to stay another night at Children's. Eva came to visit mommy with Aunt Stephanie, Uncle Nick and Aunt JoAnna that night, since it was 3 days without being with her. Joanna and Eva weren’t technically allowed to be there, but we let them visit in the lobby. The next afternoon, THANKSGIVING, Paul, Claire and I were able to come home!! Yay! What a perfect Thanksgiving treat!
PS: Eva LOVES her new baby, and is constantly kissing and asking to hold her!
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