Archives for January 2009

Rough night tonight

6 Jan by Carrie

Hannah has had a cold for the past couple of days. Not surprising since I have had one as well, and it has been going around. You know, the run-of-the-mill runny-nose kind of cold.

The problem is, like right now as I am writing this and she is lying in her crib next to me, that she is having a harder-than-usual time breathing. She has always had breathing issues due to her laryngomalacia (poor muscle tone in her throat). But now she is lying on her back (even though she started on her side) and breathing pretty heavily. I keep looking at her chest and throat to see if she has having bad retractions, which she isn’t.

I’m trying not to overreact. I woke up my husband two nights ago and almost took her to the ER because of it. But she made it through the night (with me wide-awake watching her the entire time). She is much better during the day. We got a new humidifier and that has helped quite a bit, which goes back to it being just a cold.

We go back to the pediatrician on Wednesday for our every 2-to-3-week checkup. I’ll definitely bring this up to him. We go back to the ENT doctor (otolaryngologist) on the 26th for her laryngomalacia, and I don’t see any improvement in it. But it doesn’t seem to be getting worse either.

~ Filed Under: Hannah's Fight

Skin biopsy — ready this week?

5 Jan by Carrie

Hannah had her skin biopsy on November 12th. They said it could take a month or so to grow out. I know that her cells are growing slowly, but they have GOT to be ready this week, don’t they? It has almost been two months. I’ve had a really rough time sleeping lately — partly due to a cold and partly due to the fact that I’m really starting to get anxious.

Hannah’s geneticist’s nurse said the lab said another week or two for the cultures to grow out. That was 3 weeks ago. Now that the holidays are over, we should HOPEFULLY get word that her stem cells are ready for testing for NPC and the other lysosomal storage diseases in their “full workup”.

Scared, nervous, anxious, petrified… yep, that about sums up how I’m feeling.

~ Filed Under: Hannah's Fight

Day at the zoo!

4 Jan by Carrie

My new favorite picture of Hannah, 5 months old!What a fun afternoon. Big Boy E spent the day (and night – a sleepover!) at his friends house, so Daddy and I took Little Girl A and Hannah to the zoo. The last time we were there, Hannah was still inside my tummy!


It was also another first. We decided to graduate her from sitting in her carseat on the stroller to letting her sit in the stroller. Thank goodness it had a five-point harness because she still can’t sit up on her own.


She LOVED being able to look at everything. It was so awesome! She had no clue what she was looking at, but she was just all smiles and “big eyes” (what she does when something fascinates her). She lasted two hours before she fell asleep.


Hannah's first time sitting like a "big girl" in her stroller!Little Girl A loved it too. Even though it felt weird not having Big Boy E there (it was like a part of us was missing), it was great to see Little Girl A exploring as the ‘oldest’ sibling. She had no one to copy, no one to harrass, and took on this independence like we have never seen before. It was really good for her.


I can’t wait to have more fun days like this (but next time with Big Boy E with us!)

~ Filed Under: Hannah's Fight

Dearest Hannah

1 Jan by Carrie

There are only a few hours left of 2008. As I look back, I could never have even come close to predicting what this year would bring us.

I found out about you on January 12th. Your sister knew you were in my tummy before I even knew you were there. It was just a simple comment from her when she was lying on my stomach — “Mommy, there is a baby in there.” How did she know? Daddy and I just looked at each other wondering if perhaps this explained what turned out to be morning sickness. At that time, you had already been a part of me for 9 weeks. I remember being freaked out. After all, it had been 7 years since our last infertility treatment. After 4 IVFs and three miscarriages, I was just in shock that you were in there. Sure enough, a pregnancy test the next morning confirmed with Little Girl A had already known.

We had a rough third trimester, you and I. I remember breaking down when at 29 weeks Dr. S. said that you may need to be born that week because my blood pressure was 210/110. I never had high blood pressure before that week. But after two months of strict bedrest, I’m so glad that we were able to hold on until that 36th week.

When you were born, you were perfect. As soon as Dr. S. lifted you out, you started crying. Such a welcome sound since we didn’t know if your lungs were developed enough. But you were ready to make your mark on the world! Apgars 8 and 9. Ten fingers, ten toes.

We only shared one day, the first day of life, that was stress free medically. From the second day of life, you have faced so many challenges and scares. You proved to the NICU doctors that you were a strong girl. You have been poked and prodded dozens of times in your short five months, and you handled it better than I ever could have. Even after that horrific skin biopsy and laryngoscope experience, you still recovered within minutes and showed me that beautiful smile of yours while I was still shook up from the experience.

You are such a charmer. You have a way to make everyone who meets you fall in love with you. I remember when Dr. G., your genetics doctor, first met you. He was very straight-to-the point until you smiled at him. He melted like a puppy and totally changed his whole tone of conversation. You are such a beautiful girl. You even have your big brother and big sister wrapped around your little finger.

I love your touch. I cherish every moment we have together cuddling together, even when it is for more than an hour. I just love having you around me. I love the smell of you. I love the feel of your fingers and little hands, especially your toes. I love stroking your hair while you lay on me just staring into my eyes. I love when you just stare at me for long periods of time…what are you thinking? I love the fact that you get excited when you see me come into a room. I love that you feel instant comfort in my arms when you are upset and crying. I love watching you sleep on your daddy like you are now. I love watching your brother and sister try so hard to make you laugh and then watching their face when you do.

There has never been a day that I haven’t worried about you. I worry about your future. I worry about your pain. I cry often just thinking about you. The doctor’s think that you may have a horrific and debilitating disease that would take you away from us in just a few years. I just cannot accept that right now. I have a hard time believing that God would give you to us just to take you away from me. There is a reason that you are here.

But no matter what the diagnosis is, I promise you this. I will fight for you. I will fight night and day. I will do whatever it takes to find a treatment and cure for you. I will reach out to every person in this world if I have to just to find the one needle in the human haystack that can help you. I promise that I will make you comfortable and keep you as happy and painfree as possible. I will never, ever give up on you.

I am so in love with you, my dearest little Hannah. I hope that 2009 brings us good news.


~ Filed Under: Hannah's Fight
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