I cannot express to all of you how loved and supported we feel during this time. This is the hardest thing Mike and I have ever encountered and while our strength comes from above, we feel held up by our friends and family each and every day.
Yesterday, we met with a neurologist who diagnosed Sophie with Tuberous Sclerosis. Her MRI showed multiple lesions on her brain which in combination with the heart tumors and the seizures was enough to confirm it without waiting for genetic test results. We've known it was a possiblity all along, even with the hope that we had throughout the pregnancy that it might not be. All along we knew that the testing after her birth would give us true answers. It was a strange feeling to receive the diagnosis in that we obviously don't want Sophie to have this condition, but since she does we can now move forward and do what needs to be done for her.
Today was hard for me. I feel like I finally hit an emotional wall and the tears came off and on all day. Sophie has been in an isolation room in the NICU since her arrival since she came from another hospital and they had to get tests back to clear her of anything contagious. It was actually nice having her in there b/c it was a private area and a lot of space. This afternoon she was moved out to the regular NICU room which is packed full of babies. It's louder and cramped and just mentally stressful after awhile. The nurses are incredible though. I really feel like they love and care for each baby like their own. We thought that Sophie hadn't had a seizure for the past 48 hours as of this morning and then she had two this afternoon while we were there. We are thinking more that she may have had some small ones that the nurses missed since she was in the private room and not as visible all the time. So it is a good thing that she is in the main room now for that, but harder for us. We were hoping that she might be able to come home later this week, but after the seizures today there is talk of changing her medication which would require more observation and therefore, more time until she's discharged. Tomorrow we hope to be able to talk to the neurologist that will be following her once she's discharged, who also specializes in Tuberous Sclerosis. We have so many questions for him.
Please continue to pray for Sophie. She has such a long road ahead of her as do we. It's hard not knowing when we will be back home again and when our lives will settle down. It seems like life will never be the same again and that may be true. There is just so much emotion involved and we are learning quickly how to truly take life and all of this one day at a time. Mike and I know that she was given to us for a reason and that we were given to her as well. We stand firm in our faith and just want to learn how to take care of our littlest girl and give her a good life.
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