I went and visited Hannah only twice today (because they were closed for a few hours because another Hannahad surgery). This afternoon, I picked E up from camp, and we went together. He is nervous about holding Hannah, but he kept showering her with kisses and talking to her with this cute little voice “Hi H, I’m your big brother E.” I also let him feed her, but I don’t know if he got nervous or if his arm really was tired like he said, but that only lasted a couple of minutes.

However, this morning, Hannah got a temporary roommate while I was there. It was a full term baby that was born yesterday. The nurse was whispering to the other nurse who was working on him that he was a “multiple anomoly” baby, and they were waiting on a number of tests including multiple ultrasounds, EKG, and bloodwork. They also wanted to do a chromosome study on this baby because they were trying to get the parent’s consent before they could do it. It was pretty crazy, and all I could do was just sit there…three feet away…holding Hannah and just stroking her hair and hugging her. Then, one of the other nurses came over and asked if this baby was going to stay in the NICU, and the first nurse (who brought the baby in) said “No, he needs to go back to his mother as soon as the tests are done. They want to keep him with them.” It was all I could do not to cry right there, especially since they were all working so frantically trying to get these tests done, and there I was, trying to be invisible but couldn’t leave.

So, instead of being angry, frustrated, and just so upset that Hannah is still there, two weeks after she was born, I decided to focus on the positives because our situation could really be so much worse. After all, with the exception of the platelet level issue now and with the spleen almost back to normal, Hannah is a healthy baby. The NPs even told us that if it wasn’t for a baseline bloodwork that was taken because of the jaundice that they probably would have never even known about this platelet disorder (which in hindsight could have caused more serious problems if she had an injury or would have worked itself out on its own — we don’t know yet.)

• Hannah is growing fast. She was born at 6 pounds, 11 ounces. She had lost about 7 ounces after birth those first few days, but now, two weeks later, she is back up to 6 pounds, 10 ounces. She gained two ounces today alone!
• She is an eater! She easily puts away 2 ounces at each feeding, and today, she even took 70 mL (30 mL per ounce). She is NOT a good burper though — even the nurses have trouble getting her to burp. But not too worry too much, apparently she is, well, um, a “tooter” out the other end and often. She even makes this face sometimes right before as to warn us, it is so funny!
• She is mellow! She is definitely not a complainer yet. She rarely cries, and if she does, it is only for a few minutes (usually when she is woken up to change her diaper.) She is just a very content little baby.
• At least she is on a routine now so when we bring her home, she’ll be used to her sleeping and feeding schedule. Also, with her in the NICU, I was able to recover from the Csection much quicker than I probably would have if she was home right away (again, trying to look at the positives.)
• She loves to sleep on her arm and loves to have her hand near her face when she sleeps. I don’t know if this is something that can be inherited, but she likes to sleep the same way I do! I find it fascinating when she is almost putting her arm under her head (when she is on her side).
• She has Daddy’s lips. That was so obvious from the first day! Honestly, I can’t tell any other “his” or “mine” features at this point, but the lips are something that definitely stands out because my Daddy has the most perfectly shaped lips.
• And most importantly, as I mentioned before, with the exception of this blood issue, she is a very healthy baby…probably one of the most healthy babies in the NICU there. She is doing everything a full-term newborn is supposed to do — no breathing issues, eating well, pooping and peeing well, etc. She is on a monitor, but I think that is just because she is in the NICU. With all the babies in incubators and warming tables, I do feel guilty sometimes because she is the only one that we can see in an open crib. She gets to wear our clothes we bought her, and we are able to pick her up anytime we want without restriction.

They aren’t doing another platelet level until Friday morning. They are just going to do it every 48 hours instead of 24. She needs to go up 16+ points on her platelets before we can take her home and treat her as an outpatient. She was able to do 21 points during the last 48-hour period, but for some reason on the 24-hour period after that, she only went up 2 points. So we have NO clue what to expect Friday morning.

As for me, my recovery from the Csection has gone remarkably well, much better than I had anticipated. I do think it helped that I had to walk so much so quickly (the NICU was on the floor downstairs from my room in the hospital plus all the visits after I was discharged) plus being able to just relax at home. The only medication I am on at this point is my BP medication. I stopped the Lortab two days after discharge, and I don’t even need the Motrin at this point. I still feel twanges of pain in my abdomen on the rare occasion if I bend wrong, but I’m very careful not to move too fast.

The only remaining issues for me, and I’m going to be seeing my regular doctor tomorrow morning and my OBGYN on Friday, are my blood pressures (since I can’t check them at home since my cuff broke), and I still have some residual numbness and tingling on the front of my right thigh (from mid-calf to my pelvis) which does kind of concern me. But tomorrow, I start working on getting me healthier…which in turn makes it better for me to take care of my 3 kids once they are ALL home!

64. That’s it. Her platelet count only went up 2,000. The docs were hoping to see at least in the 70s this morning. “At least it didn’t go down.” They are going to test her again tomorrow morning. If she can’t get into the 80s by Friday, they are going to “sit down and reevaluate” the situation including possibly another IVIg treatment or perhaps a platelet transfusion from me.

I didn’t share this yesterday because I didn’t want to get my hopes up, but yesterday, the docs were so excited with the 21-point jump that they told us that it looked like we could bring Hannah home either today or tomorrow — expecting another big jump today. They even said to make an appointment with Dr. B (our pediatrician) for Friday for followup. They never said this was going to happen for sure, but they were “guardedly optimistic.” In the back of my mind, with our history of infertility and adoption, I really wanted to believe it, but both Daddy and I had the mentality of “we’ll believe it when we see it.” Sure enough, this morning’s numbers changed things…

They are going to release her when she gets to 80 to 85. So, if for some miracle (which I hope God is listening) she can get to 80 by Friday, they will release her that afternoon. We are grateful they are lowering the threshold from 100, their initial release level. We aren’t sure why, but one of the NPs made the comment about knowing Daddy & I will keep her safe and take it easy with her until she gets up higher…I guess Daddy & I going to the NICU 3 to 6 hours a day, every day, shows them how much we care about her.

Fortunately, I was able to be there for her 5 PM feeding, thanks to Eduoard fizzling out on us. I only spent less than 90 minutes there, but that was good enough for me. Today, the NICU is closed from 2 PM to 5 PM (which is her two feeding times, ironically) in addition to their normal shift-change closure, so my time is going to be limited again today. But that’s okay, I’m going to head out in a little bit to spend the morning with her.

Oh yeah, more positive news, her spleen is looking much better. It is not as hard and enlarged as it was, and the NP told Daddy this morning that it has even started softening (the way it should be). So, perhaps, whatever the situation was, the spleen needed time to repair itself which MAY have something to do with her platelet count situation.

I hope we can at least get into the 70s tomorrow (the 80s would be better, but I’m not going to push it!).

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.