Saturday, October 29, 2005

I hate this roller coaster ride we are on....


Today the NICU had its annual Reunion Halloween party. Brian and I were planning on attending it, we even got up a little energy to round up some costumes. We wanted to talk to other NICU parents and to meet their once-preemie children.

However, when we called to check in on Kaitlyn this morning right before we were leaving the house at 11am, we discovered that at 4:30 am last night the doctors had to pull and then re-intubate her as she was having some very bad de-stating spells, which continued all morning. They have no idea what’s going on, but she is back up to 100% oxygen. We were a bit upset that they didn’t call us.

We quickly decided to not go to the NICU reunion party (we were not in the mood) and rushed to the hospital, where, unfortunately, there really wasn’t anything new to find out since we had spoken to the doc on the phone. She did have a destating spell while we were there, where she fell down to 35% saturation (it should be 90 or so) – she turned blue. Needless to say, I’m a bit of a mess now.

They took all types of blood tests (which means she had to have another blood transfusion and she had one the day before yesterday, or it may have been yesterday I can’t remember.) They say it might be an infection which they haven’t caught (so she’s back on antibiotics), or it could be the breast milk that she’s been given is leaking into her lungs (so they’ve stopped the feeds); basically they have no idea what it could be so they try to treat all the things they think it could be and hope she recovers.

Guess I can forget trying to hold her once again for a while.

Definitely a roller coaster ride....


Anonymous said...

just keep holding on.. never lose your hope! :)

michelle said...

Liz- hang in there, it is such a roller coaster ride, the whole nicu experience, every day every hour a change. I know it can be so discouraging to have her go off and on the vent, but she's still learning how to do this breathing thing. We went through a similar thing w/declan.

The first time you get to Kangaroo, will be amazing. I still get boose gumps when I think of the first time I did it with my two. It is well worth the wait.

You guys are in my thoughts every day, and we all say a special prayer for your family every night. take care,
Michelle from Sidelines

Anonymous said...

I'm sorry to hear you are having so many ups and downs with Kaitlyn. I'm sure things will start looking up soon. Please know we are thinking of you, Brian and Kaitlyn often. We really appreciate your updates.

Allison from MPOMC

Virginia (west coast prom) said...

I am sending you my thoughts and deep wishes for strength, persistence and hope for you, for Brian and for Kaitlyn.

I appreciated you posting on my thread at babycenter. It is sooooo good to hear from you. And yes, weeks, it feels like months have gone by since we spoke.

Know that there are so many people sending love, prayers and good vibrations your way.

Stay strong, and remember, take care of yourself. I cannot say this strongly enough. But since I also spend 10+ hours a day in the NICU with my son, I feel like I have extra privelige to say it again: take care of you. It's the only way you brought Kaitlyn as far as you did.

Strength, hope, positivity and a dose of spiritual sunshine are headed your way, from me to you, Seattle to SF.

Warm regards,

julie deruvo said...

Uhh, what a ride it has been for you guys! How frustrating and disappointing for you. But, thankfully the Dr.'s are on top of it, and are giving her the BEST care possible! She is proving how tough she is.

Just try to keep your chin up. Each day marks a milestone for Kaitlyn.

Hugs to you,