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Archive for the ‘Neonatal alloimmune thrombocytopenia’ Category

Severe neonatal alloimmune/isoimmune thrombocytopenia. That is the working diagnosis for Hannah’s main platelet problem. The viral panel came back this afternoon, and thank goodness, her CMV (cytomegalpvirus) was negative. It also causes similar symptoms to what Hannah has, but it comes along with hearing, vision, and possible neurologic problems. So NAIT is the diagnosis of exclusion that they are working on.

Because CMV was ruled out, they are going to do an IVIg infusion tonight. From what I gather, this infusion will give her antigens to help fight against the bad antigens from my body (which apparently are fighting her platelets). Whatever will get her healthy, I’m all for it.

When we got there for the 1:30 PM feeding, the NICU nurse warned us that she had to put an IV port in Hannah’s head. To them, they say it is easier to use the vein in the head so that the baby can still have her hands to herself. If all goes as planned, they will start the transfusion tonight at 6 PMish, and it will last a couple of hours. Then, they will do an IV saline flush through the IV for a few more hours after that.

Because of the IVIg transfusion, they aren’t going to do blood work tonight, so we have to wait until tomorrow morning. Also, we won’t be able to see her until tomorrow morning, so we actually stayed 90 minutes during this afternoon’s feeding (instead of our usual 45 minutes during feeding time) just so I could have more cuddle time. Of course, she was sleeping the entire time, but I didn’t care. I just loved caressing her face, rubbing her hair, touching her cheeks, kissing her head, and just staring into her sleepy little face.

We also talked to our pediatrician this morning. He has been really on top of Hannah’s care and was even at the hospital earlier this morning because he had left a note with his personal cell phone number on her chart in case something happened this weekend. He definitely agrees with the course of action so far, and he explained to us that this is not a day-to-day basis type of situation but, more likely, a week-by-week basis. He can’t release her early because platelets this low are very dangerous for cerebral bleeding…same thing the neonatologist told us, but he has a way of talking to us like a “real parent” in layman’s terms.

So, we are keeping our fingers crossed that tonight’s transfusion goes well and that tomorrow’s numbers show some sort of improvement. We are also settling in for a longer haul than we had been anticipating (planning for her to be in for at least the next week and be pleasantly surprised if she comes home early).

Also, Hannah is one week old now! She was born one week ago this evening. Wow, where did the time go!

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