Archives for August 2008

OMG, what a whirlwind day! It’s 2:30 AM, and I’m wide awake after just feeding my beautiful daughter IN MY OWN HOME! I’m going to be a wreck tomorrow, but it is so worth it.

To make a very long story short, my favorite NP and day nurse really spearheaded the drive to get Hannah home sooner than later (waiting for the 80). They talked to the neonatologist who is in charge of her care, and he agreed that if the head of the Hematology department downtown agreed it was okay that we could bring her home tomorrow. Then, my NP talked to Dr. B, our pediatrician and to Dr. H, the Hematology head, and they said “if they want to pick her up tonight, that is fine with us.” My NP said “you can wait until tomorrow if you want.” Yeah right!

Since Hannah has been asymptomatic from day 1, since DH and I have been so diligently visiting and taking care of her (they called us “responsible parents), and since they feel that this is something that we can work on as an outpatient, they agreed to let her go!

After all those phone calls, I called DH to tell him the news and he high-tailed it home! With E and A in tow, I had to bring Hannah’s car seat to the hospital for a car seat test. Basically, Hannah has to sit in her car seat for one hour to make sure she has no breathing or other issues. They only do this for babies born before 37 weeks (Hannah was 36w1d). She passed 🙂

After that, the four of us went back to the hospital to pick her up. The kids were much more excited than I thought they would be. It was so fun to see them googling over her. We left as a family of five at about 8:15 PM tonight. Just having her home was so surreal! We were ready for her, but at the same time, we really weren’t ready. We are going to have to make a run to the Carter’s outlet tomorrow and/or Children’s place because all of her sleepers are 0-3 months, and she is still in preemie size clothes (even though she is 6 lb 11 oz again – back to her birthweight at discharge).

I also have to go see my OBGYN tomorrow for followup and to see if they got my platelet antibody test results because the Hematologist is waiting for those, as it my pediatrician and the neonatal team. We also will be see Dr. B tomorrow afternoon for another blood test (for platelets and bilirubin) and to come up with a plan of action since he is taking over the lead. We really have the best pediatrician — I found out today from the NP that he has been in constant contact with them since the beginning, and he was thrilled to see they decided to release her and figure out what is going on as an outpatient.

Anyway, thank you all for your prayers and well wishes! I can’t wait to start sharing more of the fun things now! We still have a way to go until her platelets reach normal, but at least we can do it with her safe in our arms here at home with her family.

Went to my general doctor this morning. My BP was 150/100, which is still high. We talked a bit about how my BP was in the normal range (120/70 and 118/74) on the two days after delivery of Hannah and how my BP seemed to increase once all hell broke loose with her having “a mass” and everything that followed that. So, he isn’t sure if I have chronic hypertension, remnant pregnancy-induced hypertension, stress-related hypertension, or a combination of two or all three. He decided to put me on a low-dose BP medication, lisinopril 10 mg a day, for the next two weeks. I’m also to monitor my BP twice a day to make sure that I don’t dip below normal or if I feel weak, lightheaded, etc., I am to call him immediately. In two weeks, he will decide whether to continue this medication or increase it.

I took A to visit Hannah at the hospital this morning. We were there over an hour, and she was absolutely fantastic! I guess just not having both kids there at the same time is the key!

While we were there, Susan, our favorite NP, came up to me with a down face. She said “Well, her numbers stayed the same at 64 this morning.” Her day nurse and I both looked at her and said “that was from yesterday. No labs were drawn today.” Susan was very surprised and disappointed. She absolutely adores Hannah and told me that every day she comes in, she immediately looks for Hannah’s labs to see how she is doing. When we told her that it rewritten for tomorrow morning, she said she wanted them done immediately. She didn’t want us to wait until tomorrow because SHE wanted to know how Hannah was doing.

I just got the results of the labwork, which technically was a 32-hour lab. Her platelets are at 68. Needless to say, I was disappointed. I joked that I wanted to steal her out of the NICU and bring her home. She knows how bad we want her home, and she told me some more POSITIVE news…she just got off the phone with Dr. B, our pediatrician. She is having a meeting with the neonatologist in charge of Hannah’s case and is going to talk to him about letting us bring her home earlier than waiting for 80! She doesn’t know if he will let us do it, and I don’t know what Dr. B had said to her, but she is going to push for release knowing that we will do whatever it takes and however often it takes to get Hannah’s condition resolved. I told her that I will even drive to the hospital twice a day if I have to so she can get lab work done.

I won’t know the outcome of this “afternoon meeting” until later on today, possibly evening. But gosh, I am just praying that they let us bring her home and recuperate her. We know she is slow going in her platelet regrowth, but according to my general doctor, 68,000 is out of the danger zone for internal bleeding, so maybe they can consider that.

PLEASE let this meeting go into our favor! I know they only want to do what is best for Hannah, and they don’t want to release her if they feel they are putting her health in jeopardy, and I DO appreciate that and respect that. I just really want her home…

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!).