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Archive for July, 2008

Thursday PM numbers

Unfortunately, her platelet count has dropped quite a bit from this morning … from 54 to 42. I’m heartbroken. I want so much to have her healthy and bring her home. I had the hardest time putting her back in her crib tonight.

Her bilirubin did go down, just a bit from 11.7 to 11.4. Not quite the drop they wanted to see tonight, so that isn’t great news either…though at least it didn’t rise by itself.

I don’t know what tomorrow brings. We’ll see what the Friday AM numbers look like, I guess. I’d give anything to bring my baby girl home…Geez, even just typing this is making me want to cry again…

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Everything with our gorgeous little girl was going well the first couple of days. She was able to room-in with me, and I loved having her right there. DH spent the first night with us, and I couldn’t take my eyes off her (My parents came into town and the kids slept over at their hotel). She did exactly as she was supposed to – eat, poop, pee, and sleep!

The second night, I was by myself because DH went home to sleep with the kids since they were missing us quite a bit. At about 12:30 AM, I asked the nurse if they could take Hannah to the nursery just so I could get some sleep. I slept a bit, but at 4:00 AM, I missed her so much, I asked the nurse to bring her back. I hated being apart from her and couldn’t sleep anymore without her there!

Later that morning, the pediatrician on call came to check out Hannah. He said she looked good except for an obvious case of jaundice, and he was going to have them bring up the photo therapy lights. He wanted to get some bloodwork to check out her bilirubin numbers.

Around late afternoon, they brought in the photo therapy lights and got Hannah set up on the machine. I absolutely HATED the mask they make the babies wear, and Hannah hated it too, it was clearly obvious. But I know she had to wear it. We were allowed to take her out to feed her, but she needed to be in those lights every other moment.

They also wanted to do some bloodwork and had to take three vials of blood from Hannah’s foot. She was NOT happy, especially since one of the vials had clotted twice on the way to the lab, so technically, her little body had to fill 5 vials!

I’m not sure how this next part really started, but DH spent that third night with Hannah and I in the hospital. About 1:00 AM, my nurse brought in this NICU nurse, and they started talking about the “mass” in my baby’s abdomen like I knew what she was talking about. DH had woken up by this time (still very groggy, he was exhausted). Then the NICU nurse made the comment about how “she only needs one kidney anyway” and then left the room. DH and I just looked at each other trying to figure out what the hell just happened, and I lost it. Call it hormones, call it fear, but I just became hysterical… what do you mean my daughter only needs one kidney? What mass? DH stormed out of the room and after the nurses to find out what the hell they were talking about.

Apparently the night that Hannah spent in the nursery, the doctor’s palpated a pass in her abdomen. The nurse that night was supposed to tell us what had been found. We were NEVER told. Our night nurse was actually really apologetic for what had happened, as they thought we had already known, but we were more furious with the NICU nurse acting as if surgery was no big deal on a 2-day old baby and treating us as if we weren’t there! I need to get more details from DH on all of this because this really has become such a blur.

Long story short…

The next morning, Hannah’s bilirubin numbers still climbed even though she had been under the photo therapy lights and phototherapy blanket, which apparently is unusual. A new NICU nurse (who was very sweet) came in and told us that the doctor’s had decided the Hannah needed to be transferred to the NICU to be assessed and monitored.

They ended up putting her on a heated open crib in the NICU with the photo therapy lights going. It broke my heart to see her in there that first time. But, in hindsight, this was the best thing for her because these items needed to be figured out.

So, here is where we are…

1] Thrombocytopenia. Hannah’s platelet count is of our highest concern at the moment. Normal platelet counts are between 150,000 and 300,000. Her count went from 31,000 to 6,000, which is dangeously severe, and they were worried about intracranial hemorrages. They ended up having to give her a platelet transfusion on Monday because it was so low.

There are two thoughts as to why this is happening…either she has contracted a virus like CMV, which can have hearing, vision, and neurological defects, as well as attacking the platelets, or she has Neonatal Alloimmune Thrombocytopenia, which means that the proteins from my platelets in utero thought that her proteins in her platelets were foreign objects and attacked them (same philosophy as Rh factor, but much less common). Either way, her body wasn’t able to either produce new platelets or it was continuing to destroy the platelets that were growing…we aren’t sure at this point.

They take her platelet count every 12 hours, at 6 AM and 6 PM, each day. Her numbers have been like this… Pretransfusion 6,000. After transfusion, 86,000, then 79,000, then 61,000, then 54,000, then 44,000 last night. If they get to 30,000, they need to do another transfusion and would prefer to do it by tomorrow, as that is when her current bag of donated platelets expires (prefer to keep the same donor as she didn’t have any negative reactions to the tranfusion).

BUT, we got some good news for the first time today! Her platelets actually went UP for the first time since this all started! To 54,000! Still extremely low for normal, but it is a GAIN, which means her body is started to produce platelets and/or her body isn’t destroying the platelets she is making as much (or at all, we don’t know!).

We talked to the neonatologist and the nurse practioner today about this, and both said this is a great sign, but to be prepared because it can go back down again, as they have seen it do many times. But this is a positive step forward. When we asked what they are looking for, they said that they want to see a positive “trend” of increasing numbers to over 100,000, and then we can consider sending Hannah home for outpatient continuing treatment. So that is our goal — 100,000!

2] Jaundice. Unfortunately, Hannah’s jaundice is more stubborn that most newborns. But, like the platelets, we are finally seeing an improvement in the past two checks (check once a day). She went from 13.9 up to 16.9 (normal being 0.2). We have had ups and downs with this, but after three days of being on the “down side,” even though it isn’t down as far as they would like, they decided to try her off the photo therapy lights from noon today on and see if she can bring it down on her own. We find out that tonight as well, as they are going to do another check at 6 PM.

3] Enlarged spleen. After doing a full abdomen and head ultrasound, it has been determined that her spleen was quite enlarged, and that was the “mass” that had been felt. No one is sure why. However, today was the first day that her spleen actually started to shrink! No rhyme or reason, but this is great. The doctor’s think that maybe the spleen was eating up the platelets somehow, but again, this is just a theory.

So that’s where we are medically with Hannah. Still waiting and seeing, but today was such a positive day in terms of going in the right direction finally!

As for Hannah herself, OMG, she is just amazing. We try to do as many feeds as possible even though I’ve already been discharged, at least 4 to 5 a day if we can. I cherish that time so much, even if it is just being able to hold her in my arms and cuddle her. She is starting to open her eyes more, and I just melt when she stares into my eyes and watches me. She also has the cutest little facial expressions, especially her “smile” (you know, the gassy effect). She also has this “am I yawning or going to cry” look she gives us. I hate having to leave her there!

DH is completely smitten with her too. We almost have to fight over who gets to feed her and who gets to hold her (I usually win, but I let him have time with her too.). I love watching him just hold her and stare at her, studying her.

The kids have both met her. Ethan seems indifferent but happy. Abby just can’t get enough of her. Unfortunately, they haven’t spent really any quality time with her because she has been in the NICU for 4+ days, but it should be interesting to see how things work out after she gets home, which I hope is soon!

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