Sep
18
2008

10th Day Post Surgery - 11:25 PM

10th Day Post Surgery - 11:25 PM

I couldn't let a day go by where I didn't post some sort of update - so even though its pretty late here goes.

After making rounds this morning the doctors said the wound on Lilees chest is healing nicely.  They are still going to change the bandages a couple times a day but just to be safe.  Probably the most exciting part of today was the removal of the central line (The IV in her neck).  With that gone we were able to put a little shirt on her.  Probably not the most exciting news on the planet but that little shirt marks progress and when you are taking things one step at a time each little step is really a blessing and a miracle.  They are still aspirating her plural cavity with the left side producing nothing and the right side about 50ml of gunk.   I am told this should start decreasing soon.  We just finished a feeding at she ate 5ml which is not very much and I fed the rest using the feeding tube.  Hopefully the midnight feeding will be better. 

Due to the craziness with the home construction and everything else going on today was messed up right from the get-go.  I finally made it to the hospital at 7:00 to spare Afton.  One of us gets to stay here in the room 24 hours a day.  So we have decided to take turns at night.  Last night was Afton and tonight is my turn.  So for our change of shifts I brought the kids so they could hold Lilee for a few minutes each.  They sure get excited to see her, its really kind of neat.  Especially since she is not hooked up to pumps and tethers and the kids can really hold her.

I thought that some of the people reading this would be interested in what our little experience costs.  So I am going go create a page called "What does it cost" that I will update as I receive a bill.  We are extremely lucky that we have insurance and that some of our "experience" is going to be covered.  I am trying to figure out a way to display the information so it is readable.  My initial attempt has not produced results that accomplish that so I will try again later tonight.

Well I have been looking forward to my alone time with Lilee all day and its almost feeding time so I'm going to go hold her for a bit.  How cool is it that my kids are able to hold her now though, here are some pics:

 

Comments (5) -

Wow! What a beautiful family!  I'm so happy for all of you that Lilee continues to improve, to God be praised! Even though I know it's somewhat time consuming, please keep the posts coming, it really helps those of us that are so far away feel connected.

Love to all,
Roxanne and Kevin

Hey LFo!  Thanks for keeping up with the posts.  I'm glad you took time to right last night cuz I was actually getting a bit worried that things weren't going well when I didn't get an update.  Glad to hear about each little step forward.  We are thrilled that things keep improving and that Heavenly Father continues to bless Lilee and your family.  Your positive attitude still amazes me!  Thanks for sharing your experience with us.  Can't wait to see the how much does it cost page. Smile  Tell Afton Hello.  Love, Wendy  

Look at those smiles!  I love Maren kissing Lilee - That is so Maren!!!  Do you have a keepsake box so you can keep her first shirt forever?  If not, let me know and I will bring one. Each of these steps, baby or big are indeed worthy of news.  Afterall it is usually through the small things that God's wonders are revealed.  Larry, you guys have so much on your plate - thank you for sharing Lilee's journey and for your faith and humility to see and share each of these milestones.  

It is so great to see all the progress your little one is making! How incredible! And how exciting for the kids to be able to hold her. Those photos are priceless : )

What a lucky little girl to be in your beautiful family.   Those pictures say it all.   "she is loved"  Larry, you have always been the most upbeat, optomistic person I have ever known!   You comfort even us, as we hang on every post to find out Lilee's progress.   Keep up the good work Lilee!!!  
Lori  

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About the author

I am the proud father of 6 Children (5 girls and 1 poor boy).  Our second youngest daughter was born with a heart condition called Hypoplastic Left Heart Syndrome (HLHS).  In a nutshell the left side of her heart never fully developed.  Hopefully this site will chronicle the progress she is making and everyone who is interested can keep up to date.