Monday, June 25, 2007

Day Eighteen

We survived the night, but didn't get much sleep at all. Getting up every three hours to feed Claire wasn't so bad, and she was pretty easy to get back to sleep afterwards. But then the nurses and doctors would come in every few minutes to ask questions or check her vitals or weigh her, so they kept us up all night in between feedings. It is impossible to sleep in a hospital! My mom drove down this morning to give me a break and I was able to go home and nap for a few hours. She is staying at the hospital with me tonight so that James can go home and get some sleep.

Claire is still having trouble drinking 60 mL. They may start supplementing my milk with formula so that she can drink less but still get the calories she needs.

They tried taking her off the oxygen again today but had to put her back on after a few hours because her sats went down. She just needs a little boost to help her lungs. Since she has failed the test twice she will most likely come home on oxygen. We are meeting with a pulmonary specialist tomorrow to find out. If she does require oxygen it will most likely only be for a few months.

They are talking of possibly letting Claire come home on Thursday, but nothing is definite yet. I can't wait to get her home!

13 comments:

Lindsey said...

What a sweet picture! That is the most beautiful face. I hope maybe you get more sleep tonight. Welcome to motherhood.

Angie Davis said...

oh my goodness, what a sweet smile!

Liz said...

Cindy,
I have read your entire story on Claire--she is beautiful. I live here in Birmingham and today i just had my 20 wk ultrasound where they are "concerned" about CDH so I am going for a better ultrasound at Kirklin on Monday--or earlier if someone cancels--anyway, if my ultrasound reveals CDH I was hoping i could talk to you more in depth--via email or maybe in person. I will definitely be praying that you all go home on Thursday! Thank you for sharing your story--it has made a scary day for me seem better. Thank you. By the way, Claire and I share the same birthday!

Cathy said...

What a face!! Very sweet. I hope it works out and all three of you are home by Thursday.

Cindy said...

Liz, I hope the ultrasound at Kirklin doesn't show CDH, but in case it does I would love to talk to you. You can email me at cindytwilliams@yahoo.com.

Anonymous said...

She is beautiful. I can't wait to take care of her when you need to make a quick trip to the store.

All of you are in our prayers.

Gail Anthony

Jolene said...

I have been flowing your story since you started your blog. Claire is sooo adorable and is doing amazing. I am a mom of a 7yr. old LCDH survivor who came home w/ an NG tube as well as o2 so if you want any suggestions or info please ask. We had o2 for 18 1/2mos.
Hope u get more sleep, sleeping in a hospital is for the birds.

cdhmama2000@yahoo.com

Carole said...

Cindy,
This is just awesome news...I am happy beyond belief for you all. Sending lots of prayers your way.
~Carole

Jennifer said...

Oh what awesome news!!! You guys will be home by the weekend!! Praise God! You have such a fighter on your hands. I am sure that if she needs oxygen, it won't be for long. Oh, we had to supplement Caden's breastmilk for about a month after he came home. Once he was gaining weight and maintaining they let us stop. So supplementing isn't so bad. I was able to actually nurse him and that was what I wanted to do so bad!!

Praises to God!!
Jennifer
Mommy to Caden, LCDH 6-1-05 a very active and wild TODDLER!!!

Anonymous said...

Cindy,

What a beautiful little girl. Very few of us, if any, could look that good with tubes and such. Looks like you and James have taken to parenthood like a duck to water.

God bless you and Baby Claire. Hope you are home soon. We all feel like she's ours since you do such a good job keeping us posted on what's happening.

Love ya,
Myra Phillips

Anonymous said...

Just read Claire's remarkable story. My son was born with CDH 15 months ago and he is doing very well. He did go home on oxygen, but was off by 3 1/2 months. The dr ordered a night study that measured his oxygen saturation levels while he slept...he did fine and this gave us the reassurance that we needed! Keep the updates coming...sharing gives people hope. Ruby

Shelli Smith said...

Praise the Lord!! He is so faithful and I can't wait to hear good news tomorrow!!

~Shelli

Sharon said...

OOOOO--Good smile. If the paparazzi had any sense they would be after a picture of you!! Love, Aunt Sha-Sha