Archives for August 2008

Daddy just called after visiting Hannah on the way to work this morning, and we got the latest 48-hour platelet results… She went up to 62!!!!!!!!!!!!!! From 41 to 62!!! This is fantastic!! Also, her bilirubin went from 11.x to 6.7! Her liver seems to be functioning better finally!! I know we aren’t supposed to totally expect this to be “the turnaround” they are hoping for because we need the next panel to see “a trend,” but I will take it! I’m so excited to see this increase!!

They have to wait for the NPs and doctors to make rounds before I can get an update and their reaction to this bloodwork. I also want to know when they are doing the next platelet check, 24 or 48 hours. As much as I would hate to have Hannah pricked again for blood, I really hope it will be a 24-hour check just to see if we are still increasing or if this was just a “fluke.” I know platelets should “jump” up higher than that in this time frame in a regular situation, so we’ll see what they have to say.

Unfortunately, with Edouard’s eye bearing down on us, I won’t be able to get to the hospital today, which really upsets me. But, Daddy and I both agree it is better to keep A & E home from camp with me since Hannah is actually the safest one of all of us. E’s camp was actually cancelled today, and since A is home on Tues-Thurs anyway, the three of us are going to ride out the storm together. I’m not too worried since it is weakening, but I just WISH I could make it to the hospital at least once today … maybe tonight if things calm down, but we’ll see. At least DH got to see her this morning and give her kisses for me.

But I just have to relish in the fact, her platelets are up to 62!!!!!!!!!

Tomorrow morning we should get our next platelet count. I’m hoping, hoping, hoping to see some improvement.

I went to see Hannah 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 Hannah.

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 Hannah 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 Hannah 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…

This is what I keep telling myself today after we found out there had been relatively little change in Hannah’s platelet or direct bilirubin counts. Her platelets went from 40 to 41 in the 24-hour period, and her direct bilirubin went from 2.2 to 2.1. Definitely not the change we were hoping for, but “at least her platelet’s didn’t go down.” Now, we just wait 48 hours for another blood test to see if there is any change. I do know the neonatologist is having a “call” with the Hematology group downtown because, I guess, they aren’t really sure where to go next on this.

I went to see Hannah early this morning for a couple of hours. I fed her, but most of the time I just let her sleep on my chest or in my arms, and I just could not stop looking at her and caressing her. I feel like it is all I can do to get close to her at this point since there are so many hours in a day that she gets no contact from any of us. We, the four of us, went to do the early evening feeding, and then I went back again this evening for another hour to do the evening feeding and more bonding.

Tomorrow, both kids go to camp, and it will be good for them to get back into a routine. I’ll probably spend most of the day with Hannah at the hospital, but I also have to call both my OBGYN and regular doctor to schedule followups, especially since my BP cuff isn’t working anymore for some reason.

Daddy is going to visit Hannah early in the morning since he has to go back to work tomorrow. I feel so bad for him. He is so stressed out and has been incredibly overloaded these past two months. He is SO good with her. He loves feeding her, changing her diapers, and changing her clothes. I love watching him stare into her face and talk to her. It really bothers him that he can’t spend more time with her in the NICU now that he has to go back to work. But really, until we know what is going on, there isn’t any reason for him not to go back at this point — hopefully, when we bring her home, he can take a few more days off to enjoy her and adjust to our new family.

The kids are doing okay with the new baby. I think the lack of structure and routine has created incredible havoc on them, especially A. She has been REALLY difficult since I went into the hospital…the “not listening,” hitting, running off, etc. E has surprisingly been pretty good with everything, especially considering his ADaddyD.

You know, the hardest part about Hannah being in the hospital is that we have no progress at this point. It’s like I don’t see a light at the end of this tunnel yet, and that is just killing me. I know in my head this isn’t the case, but sometimes I feel like maybe I am being punished for not feeling “connected” to her while I was still pregnant and other feelings that I felt when I first found out about being pregnant. But now, I can’t imagine loving her anymore than I already do. Just laying in my hospital room that second day with her on my chest for two hours, just the two of us, I just fell in love with her completely. Now I can’t seem to get her off my mind and wish I could just sit and hold her all day and night long.

I need her home…please, please, please let something positive happen with her counts on Tuesday morning. This is really killing me.

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 Hannah’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 Hannah 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 Hannah 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…

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!

Bilirubin only went down .1 from 11.4 to 11.3. I wonder if they are going to put her back under the phototherapy lights?

Platelets went down only 1 point to 41,000 from 42,000. I guess I should take solace that they didn’t go down dramatically again like they did yesterday (drop of 12). I know that 30,000 was the number that they were going to give her another transfusion at, but I also know that her current donor platelets expire today. We’ll have to wait and see.

I feel like we just aren’t making any progress, you know? I’m going to call our pediatrician today to see if he can call a colleague of his from downtown (a hematologist) to check out Baby H and give us a second opinion on her condition, or at the very least assure us that we are on the right track with the treatment we are on.