We got the boot

Finally, we've been kicked out of the PICU. Yesterday morning Kaelyn was transferred to the Children's Surgical Unit (one step closer to the door home). Overall she's been doing very well. She did catch a bit of a cold/fever bug, as of yet not RSV, so we're hoping she can get over that stuff. Also, when they pulled out one of her IVs the artery that it was in clotted. So now our little one has to get a shot every 12 hrs. to thin out her blood until the clot breaks up. The poor thing. Other than that, she's doing great. Everything with her heart has worked out fine, gratefully. It's just kind of funny that her heart is doing so great but it seems like she just keeps getting beat up by something else. Lots of nicks, scratches, and sores, but nothing our feisty little one can't handle.

Thank you so much to everybody for keeping us in you thoughts and prayers. None of us could have made it through this experience if it weren't for ya'll.

Couldn't Resist

(click to enlarge)

Ok, the nerd in me (Wayne) is finally out. I found this really cool piece of software that makes these collages super easily. Then, with some fancy photoshop work, I made it look as shown above. I thought it was pretty cool so I had to publish it.

Kaelyn has been doing pretty well. We've had a couple of setbacks but nothing major. Yesterday afternoon they took her off the ventilator and put her on CPAP which is pretty common. They also pulled out two of her chests tubes because they weren't draining any more, but then liquid started to gather around her lungs. So, today they had to put one back in. We were worried that they would have to put her back on the ventilator but it turns out she handled the procedure like a champ and her oxygen saturations have improved a lot since the new tube was put in.

Update - Day 3 Post-Op

Kaelyn is doing pretty good. Yesterday she developed an arrhythmia (her lower chambers were not pumping) in her heart, so they had to use the pacers that they had set up to her heart. They said that is pretty common with heart surgery and that it is usually related to swelling in the heart that disrupts the conduction pathway. Thankfully it went away today and now she is off the pacers and her heart is doing all the work by herself.

She is still on the ventilator and it sounds like she will be for a few more days. She has been a little more awake and alert but they are trying to keep her comfortable. People keep asking how long we will be in the hospital, but we don't really know. It really just depends on how she does so we are just taking it one day at a time :)

She certainly is a little fighter, my hero. I'm so proud to be her mother (Wayne is so proud to be her father, too [added by Wayne during the proof read]). Thanks again for all the love, support and prayers. They have helped our little family more than we will ever know. The other day I was out on a run and I had the thought, "I hope in the next life I can look back on the last year of our life and see all the angels and family members who have passed that were helping our little girl through all this." I know she is in good hands and I also know that Heavenly Father is close by. When we first found out that Kaelyn had Down syndrome I read a talk by a leader of our church about children with special needs. He quoted a hymn that I have grown to love and often repeat the first line. "Dearest children God is near you, watching over you day and night." My plan is to make a cute saying board with that on it and hang it in Kaelyn's room. It has brought me so much peace and comfort through all of this.

Also I read this little story the other day and I just thought it was so cute.

"Sister Seamons also told of a particularly humorous event that happened when Brad was a young boy sitting with his parents at a ward banquet with the bishop and his wife and their precocious seven-year-old son Jake. At a certain point Jake looked at Brad and said, “Hey kid, you look kind of funny, what’s your problem?” Jake’s parents, of course, were mortified, but Brad’s mom intervened assuring them that it was all right for him to question Brad. This time Jake asked his question a little more quietly, “Well, what is your problem?” Brad looked squarely at Jake and said, “I have Down Syndrome and Heavenly Father knows it—what’s your problem?” Everyone at the table melted into laughter and Jake replied, “Well, if Heavenly Father knows about it, it must be cool!”"

I just love that. Heavenly Father DOES know it and is well aware of the needs of His little ones.

Oh Happy Day!

So, we're out of surgery and so far everything is going very well. The estimated length of the operation was 4 to 6 hrs. and it ended up only taking 3. What a relief to not have to wait as long as we were expecting. For now, Kaelyn is just hanging out. They will keep her sedated and comfy for the next day or so and also keep her on the ventilator until they feel that she is ready to do it on her own. The big thing will be to keep her heart from working too hard too soon so that the sutures don't get harmed.

A big thank you to everybody who has gone out of their way to keep us in their thoughts and prayers the past couple of days. We are certain that has helped Kaelyn and us make it through this week.

I also thought it would be fitting to include a video clip from one of Jeana's favorite movies.

And now, enjoy some pics

Resting up for her big day

"Dad, you're squishing me!"

She was so hungry this morning she needed both her thumb and the binkie.

Her PICU setup.

Tomorrow's The Day

Well, it's officially slated. Surgery tomorrow morning at 8:00 am. We had a pretty good visit at the hospital today and everything looks good. We also got to talk to the surgeon, Dr. Kaza, for a bit and he described exactly what he will be doing tomorrow. It'd be pretty difficult to explain over the blog, but if you want a description in person, I would be more than happy to give you one.

After talking to Dr. K, Jeana and I both feel really good about his skills and know that our little angel will be in good hands. Thank goodness there are people out there that are willing to dedicate their lives to helping our littles ones have the best life possible. We have been so lucky to have good doctors and nurses and also a great pediatrician.

Please keep Kaelyn and us in your prayers as we are about to undergo the scariest experience of our lives. We have faith that all will go well, but still, the thought of open heart surgery on our little 8 month old is a bit frightening.