Avery was seen by the neurologist today. We had asked about how big she would have to be to receive a permanent shunt, and he said that she would need to be about 1.5 KG (3.5 lbs) and have absolutely no blood residue left in her brain fluid. Another neurologist also asked for an EEG to be performed for her tomorrow to monitor her brain activity to help identify whether they can see whether there is any seizure-like activity going on.
Wren's air bubbles in her bad lung looked a tiny bit better today, though I don't really have a feeling for how significant the improvement was other than the fact that one doctor told us that seeing these go away completely would be pretty much unheard of. She has still been having episodes of apnea and bradycardia, but it seems like they're managing these better by increasing the pressure and some of the settings on her jet ventilator. We told the doctor our intention to continue to give her another chance by sticking the tube in the left lung again, and he agreed to do that tomorrow unless her lung looks significantly better in the morning. That would be awesome! I am still scared on a daily basis, but I absolutely do and must believe in miracles. Not just because I've already seen them here, or because believing this makes it easier to deal with the fears and doubts and stress, but also because she deserves the most that we can provide her, and right now this means our hope and our faith. It makes it difficult when not all the medical staff understand our hopes for her, and are concerned that she could get to a really bad situation if we continue to try and treat her. For me, the belief and faith that are part of me, and the logical part of my brain end up in constant conflict. They seem to feel a constant need to argue with each other.
Good luck! I personally don't know you, but my friend in UT posted the link to your blog and we have been reading along and praying for your twins (We had twins in the NICU in Utah too so we are rooting for your girls!) ps. In another post you mentioned insurance and hopefully that is all going well- but if you ever need a secondary insurance, you should look up Social Security Insurance (SSI) for Premature Infants. The hospital has probably already mentioned it, but in case you don't know about it, you might look into it in the future!
ReplyDeleteI've been surprised (and not surprised) by people who are familiar with our story that we haven't met or haven't talked to in a long time. Thank you very much!
DeleteI was listening to someone talk about a very difficult situation they had with their child. He was saying everyone was giving him statistics, etc. concerning the situation. Yet this father would feel different things entirely with his spiritual self. Sometimes our head and Spirit speak differently. I love what you said about offering up faith. "And I said unto him: I know that he loveth his children; nevertheless, I do no t know the meaning of all things." ~1 Nephi 11:17
ReplyDeleteWe are praying and pulling for these sweet babies.
Jan, you nailed it. Thanks.
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