Tomorrow morning we should get our next platelet count. I'm hoping, hoping, hoping to see some improvement.
I went to see Baby H 3 times today in the NICU. With both kids in camp, I was free to just be with her, feed her, and spend time with her. I cherished it immensely. E went with me to the last feeding this afternoon after I picked him up from camp so that he could see Baby H.
While I was there, I talked to the NP who said they had a conference call with the Hematology group downtown and my OBGYN. They had me go next door to my OBGYNs office and get some bloodwork done, looking for a certain platelet antibody, PL1C or something like that. They hope that I do have it, so if I do, I can donate my own platelets to Baby H to help her fight off whatever is destroying her platelets. But if I don't have that specific platelet antibody, then they are going to start looking for more rare disorders. So, I basically walked as fast as my body would let me next door before the OBGYN office closed 30 minutes later...they took my bloodwork (first time they had ever done this panel so they had to "look it up" apparently).
Also, they aren't convinced that the IVIg didn't work. They are thinking, maybe, perhaps it did work, and that has slowed tremendously whatever is causing her platelets to be destroyed. So, if her numbers don't come back up tomorrow or go down, they may try another IVIg transfusion.
Basically, they still don't know, but as long as we have movement and aren't sitting around, I'm better about things. If I have to donate platelets to get her better, then sign me up right now and take what she needs! If it was only that easy...but then, could it be that easy? Why didn't they consider this blood test at the beginning of all this?
Also, the NP tonight told me that she is very, very lucky she didn't develop a brain bleed in utero with numbers that low. Just what a new mom wants to hear. Apparently they see it quite often with low platelets in newborns, which is why they usually work with babies who appear sick with this condition, and not like Baby H who for all intents and purposes is acting like a healthy baby.
I know, stop second guessing...we'll just wait on tomorrow's numbers...
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4 comments:
I sense your frustrations. I am glad you were able to spend more time there today. I hope your labs show that you can help. Hugs!
I'm glad she is holding her own. I know it's got to be so hard to just wait. I do hope that they find what they're looking for in your platelets... and that it can help Baby H. I'm thinking of you constantly, and praying that things will be well soon.
Kelly and Julie are dead on. It's frustrating and it's so hard to just wait!
I remember from our time in there that sometimes they moved at what I thought was a snail's pace. But they want to make very sure of what they are treating Baby H for.... and she does seem to present them with a puzzle.
We're all anxious with you. We want to see her at home where she belongs! Much prayers and good thoughts are going out.
I'm praying for good numbers today.
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