Wednesday, April 22, 2009

1:30PM Update - Wed.

Holding my baby girl!

Today the sun is shining and I have adjusted my attitude to the new, yucky room. Kate is adjusting, too, although has been quite scared at the new room and all the new people. She still hasn't pooped and is suffering with cramping. I have repeatedly asked for an enema and was told that they rarely do that here. *sigh* It's so hard to watch her suffer for three days while they give her Miralax--with nothing happening. They gave her a suppository yesterday, and another one a few minutes ago. I hope it produces some results.

I was so excited to be able to get her to eat a few bites of lunch but about an hour later, it all came back up. Holding her while she vomited was both a privilege and torture. She was sooo pitiful. My heart aches for her.

She vacillates between wanting my touch and looking at me with eyes full of reproach. I think we are about 50/50 with that, compared to yesterday when I got waaaay more reproach. So that is progress! :) I was able to hold her today, which was wonderful. She didn't seem too uncomfortable, thankfully.

When I was feeding her lunch, Jeff was here, and I started being silly, trying to get her to eat. And then it happened... she smiled!! It was so incredibly precious. Jeff grabbed the camera and got a few shots, which I knew you would love to see. Most of the time, her eyes are dull and cloudy with pain, but for a few brief moments, they were shining. And God allowed it to happen when Jeff was there and had the presence of mind to grab the camera. I really felt like God knew how discouraged I was about her progress, and how hard is has been the past few days to see her eyes so glazed over. He gave me a glimpse of my sweet girl, which keeps me mindful that better days are ahead.

Her smile was like a burst of sunshine on a rainy day!

Her chest tube fluid is about the same. Unfortunately, she developed a large air pocket again, so they had to put her tube on suction mode. The doctor explained to me that this helps to get the fluid out, but it tends to irritate the lungs, which in turn causes more fluid to be created. So it's a vicious cycle. They will try to turn off the suction later today, so I am praying that it can stay off.

I have tried to pin them down about how long her stay will be, but have been told by everyone that fontan kids drain anywhere from 2 weeks to 3 months. Ya'll know what I'll be praying for!

Jeff had to go to Chicago today and will be coming home tomorrow night. Please pray for his mom and sister while they hold down the fort at home. Next week he has to go to Boston from Mon-Thur., so that will be a challenging week.

Since we have been moved to the regular floor, Kate no longer has a nurse hovering over her bed every minute. She is also awake a lot more. Jeff came up for awhile today on his way out of town, so that I could get some lunch. I don't want to leave her alone because she is so scared. I do leave at night, though, because there is no way I could get any sleep in this room. It kills me to leave her but I know I need to rest or I will get sick and be completely useless.


Lori said...

Oh I just love seeing those happy pictures! Kate's sweet smile is heartwarming to say the least.

Gretchen said...

Love this post! I'm glad God is in the business of answering prayers rather speedily! (smile) I hope I can bring a little brightness to your day today ~ especially Kate's

Tammy said...


Praying the draining will stop and you two can go home soon. :)

Kim K. said...

Great pictures. I keep praying for improvements and I can see results. Continue to take care of yourself.

PS. It took Josie forever to poop while we were at the hospital. All those meds were awful on her. Finally, on day 5 of the regular room she had a massive explosion.

Heather said...

Loving the smile your sweet angel displayed. Continuing to hope & pray for a speedy recover.

Cari Bacon said...

Seeing Kate smiling brought tears of joy to my eyes! Thank you God for those precious moments!

Cindy said...

OH! Kate's sweet smile made my whole day! Thanks for sharing the progress!

Kimberly said...

Those photos are priceless! I hope that she will continue to improve and that the things start moving for her too!

Deanna said...

Hi Karin!
I was telling the kids about Kate today and they said that they wanted to send her some pictures to hang on her wall! It was a very serious little art project! The 3 y.o really got into it!
Is there an address for things to be sent to at the hospital?If you don't want to display it here for all of the world to see, you could email it to me perhaps?
So glad to see that smile! She's such a brave little soul!

Tracy said...

If thats not God showing you hope through that smile, I dont know what would be. So happy for you, and I will continue to pray here in Arizona.

Karin said...

Deanna, that is so adorable! :) Give your kids a kiss for me!
The address here at Mott's is:
C.S. Mott Children's Hospital
5 East Box 0236
200 East Medical Center Drive
Ann Arbor MI 48109-0236

Deanna said...

Should I put c/o Kate or something like that?
And just wait til you see the adorble-ness!
I asked the 5 y.o what I should write on it and in typical boy fashion he said "hope you get out!" and then ran out of the room. As if to say "I've done the hospital thing before and remember how awful it can be", or maybe it was just an "I've had enough of this artsy stuff"... Either way it was a priceless moment.
Of course the 3 y.o girl is more concerned about Kate being able to sleep in her own bed again. Those sweet and caring girls! Is Kate 3 also? I had just a brief moment earlier to try to find her age on the blog and took a guess. So T thinks that she and Kate are both "3 girls".
(excuse the lack of names. They aren't mine- I'm their nanny - so I try not use their names online, just incase)

Karin said...

ROFLOL!! Deanna...that is hysterical! "Hope you get out" is such a BOY comment! You can put c/o Katelyn, Bed 2. They'll figure it out! (5 East in the address is the floor the surgical kids are on)

Deanna said...

Great! I'll send them out tomorrow!