After about 30 minutes, they called for me and I was able to go into recovery with Sophie, who was already wide awake. The sedation didn't seem to agree with her because she was letting out this high pitched scream that I had never heard from her before. The nurses assured me that she was just angry because her body wasn't working properly yet because the medicine was still in her system. They took her IV out and within seconds, she started vomiting everywhere. My poor girl was so confused and couldn't stop crying and throwing up. This was such a hard thing to see, but I kept comforting her. They gave her some anti-nausea medicine that kicked in after about 20 minutes and she drifted off into a deep sleep. That must have made her feel much better because we were able to leave the hospital, pedialyte in hand, and take our baby home.
We were anxious for the CT results, but fully expected the results to be normal. We were told that we would probably hear the results within 3-5 days unless there was an issue. Not even two hours into getting home, my phone rang. It was Dr. St. Hilaire's office.
The beginning of the call is still a blur. Because I wasn't expecting bad news, I couldn't understand what she was telling me. I did hear that the CT scan showed, "communication between brain tissue and the lesion". From what I understand, in the area that we have seen asymmetry, she is missing part of her skull. Yes, her skull. How we never found this out during our many perinatologist visits, or on her initial x-ray at birth, I will never know... Besides her missing part of her skull, there is a lesion as well. In order to find out what the lesion is, we need to have an MRI/A (I'm not certain if it is an MRI or an MRA because the nurse kept saying one or the other throughout our conversation). Because I am not a doctor, I am sure that I won't be explaining this correctly, but I will give it a try.
The lesion can be one of many things. We are hoping that her brain is not intertwined with whatever this lesion is. (I'd like to add that the doctor said her brain looked perfect) If that is the case, Dr. Greene will have to separate what he can before Dr. St. Hilaire can repair/create the piece of missing skull. For right now, we can just hope that the lesion is not a big deal and it will be a more simple surgery of creating/repairing the part of her skull that is missing. When I asked the nurse how they would do this, she said that they can use a number of techniques, but that because she is so small, they might use bones from a bone bank.
From what we know, Sophie will have to have a major surgery. Dr. St. Hilaire will be there, as well as Dr. Greene, a neurologist. It will take a minimum of 4 hours and require at least one night in PICU, followed by 4-6 nights in the hospital. They will cut from ear to ear along her hairline and she will have a drain.
We do know that Sophie will most likely need a transfusion because she is so little and will lose a lot of blood. Ironically, she is an identical twin, but we cannot use Elli's blood because you have to be at least 16 to donate. We are now in the process of giving permission for Dr. St. Hilaire's office to receive lab results from Sophie's birth hospital. Once we have all of that figured out, we will set up a blood drive for Sophie.
We are truly thankful for our doctors, especially Dr. St. Hilaire. He is a father of multiples himself, so he seems to understand a little more of what we are going through. The doctors and their teams are absolutely amazing and their nurses have listened to me on the phone for many hours already. They are extremely patient and caring.
This is still so surreal and we can't believe that something we were told was most likely positional, turned out to be something so severe. Sophie and Elli have been keeping us smiling since we were told the news and we have positive feelings about this whole thing. We are very thankful and blessed that we found this now while she is so young and are looking forward to the future once this is all behind us.
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