Well, the IVIg transfusion didn't seem to help at all so far. The nurse practitioner talked to us for about 30 minutes, and it is extremely rare not to see any boost in platelet counts after IVIg with NAIT or NIIT, which means, it either isn't NAIT (which is most likely) or that we may see a late boost in platelets (not very likely).
So, we are back to square one with no working diagnosis.
The positive is that our neonatal team is now working with the Pediatric Hematology group downtown (one of the best children's hospitals in the country) our Baby H's case. Apparently she has stumped them all so far. The main puzzle piece is that everything that it COULD be has either been ruled out by bloodwork or by lack of symptoms. The fact that Baby H is so healthy otherwise (eating great, acting great, bowels and peeing great, normal temperament, not acting sick, etc.) is really throwing them for a loop in this situation.
They are going to check another platelet count tomorrow morning (as today's was 41, which was the same as yesterday morning's count). If we see the huge increase, it will be NAIT and the IVIg just took longer than normal to work...but we aren't supposed to get our hopes up for that because that is rare. If it doesn't go down and is still somewhat stable (not dropping drastically again), then they will do another count in 48 hours to see where we are.
At that point, they are hoping that her bone marrow starts to take over more control of her platelet production and whatever is causing this (perhaps the enlarged spleen, which may also be causing the jaundice) will work itself out. Her spleen has shrunk in size, which is good, but her bilirubin level is still the same (obviously not dealing with normal "newborn" jaundice).
They seem very positive that Baby H will work this out and be able to come home at some point, as they don't feel this is lifethreatening. However, even if they can get her platelets up to the 100+ mark with at least two positive trends upwards after that, we will still have to work with the pediatric hematologists downtown as an outpatient to find out what is going on.
They don't want to "prick" her too much more for blood unless they absolutely have to, which I am thankful for. By my count, she has been pricked at least 25 times in her 9-day life for bloodwork, and that is not including the three IVs she has had (one in each hand and one in her head).
Until then, we are spending a lot of time over there. Not as much as I would like to, but as much as we can, as we have had some adjustment problems with the kids, which I will go into at a later date. Needless to say, life has been very stressful in almost all respects...
Subscribe to:
Post Comments (Atom)
Posts
6 comments:
I'm so sorry. It's scary when they don't know exactly what's wrong with your baby. {{{hug}}} I wish we lived closer so I could be of some practical help. You know that if there is anything I can do... give a yell!
I was hoping there was a definite diagnosis and I am sorry they can't pinpoint the root of the problem. I am going to keep baby H in our prayers and thoughts! Hugs!
I'm sure it is stressful on everyone. We're still praying here and sending good thoughts your way!
I am at least relieved that they feel she can work her way through this to get home. In the meanwhile many big hugs for Mommy and the whole family!
Just sending more positive thoughts your way.
You know we are on week 2 in the NICU as well. I swear I have become so familiar with the staff and hospital, I could give a tour.
There will be light. Hold on. Bring her blanket home with you and sleep with it so it smells like you for her when you bring it back. Keep a NICU journal for her in addition to her baby book. Add a picture or two from each day.
And know that you all are in our prayers daily.
Post a Comment