I haven't updated all week since we've been hoping that our next one could say that she was going home. It was looking like she would be released tomorrow until this afternoon when some things changed. The medication she's on has been working fairly well this week. They've been adjusting it and checking her levels to make sure the appropriate amount is in her bloodstream and while a few seizures have happened things were looking better. She had two seizures within an hour yesterday afternoon and they were still going to send us home with her same medication in hopes that the higher dose would take some time to work more effectively, but ultimately do that. This afternoon they decided to add an additional medication to send us home with and the neurologist as well as the doctors and nurses have been assuring us that we are ready as parents to handle this so we were feeling very confident. Not long after this, Sophie had three seizures within an hour while I was holding her. The neurologist wants to go ahead as planned and start the new medication in combination with the current one, but wants to observe her and any seizure activity for the next couple days. He really wants her to be seizure-free at home, as do we, and this is where our journey begins with being aware of her, the seizures, and adjusting medication when needed. It's overwhelming, but after 9 days of this we are actually getting used to it. We've met with all the specialists, been bombarded with information, but overall it seems like life will be manageable if we can just get home!
Mike and I both were disappointed this afternoon hearing that she wouldn't be released tomorrow. We just want to go home and bring our sweet Sophie into our day to day lives. Kayla and Madelyn are having a great time at Grandma's, but they want to go home too. And we can't. It's such a hard feeling as parents when we want something so bad for ourselves and all of our children that we can't give them. But, it's become a lesson for us as well as the girls that we band together as a family of five when life gives us a challenge. We've emphasized that we are blessed to be able to stay here, all sleep in the same house each night, be close to the hospital, and have our needs and theirs provided for daily so that we can focus on being there for Sophie. And that we would do this for either of them. Already, Sophie is teaching us and our girls so much.
Sophie is an amazing baby. We fall in love with her more each day. She is so calm and content when awake, nurses like a champ, and sleeps so peacefully you can just hold her for hours. This is the hardest thing Mike and I have ever faced, but throughout it all it feels right that she is ours. And we feel complete as a family now that she is here, even though our lives have been turned upside down temporarily. That is the thing we try to focus on. This too shall pass. We won't be going to the NICU forever. Sophie will come home and be a part of our lives.
Please continue to pray for Sophie and for our family. We feel so loved and supported through this. I will update over the weekend when we have a better idea of a release date. I know many of you are lining up meals for us when we get home and that things have had to be postponed. We so greatly appreciate this and thank you in advance.
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