9-10-09

This last weekend was pretty scary for us. Saturday night when we left the hospital Kaelyn was looking pretty good and they were hoping to extubate (take her off the ventilator) Sunday and put her on a high flow nasal cannula. Then Sunday morning we got a call from the Nurse Practitioner and the Doctor (Its never good when the doctor calls you). They were concerned because her blood gases were worse than before and she was really swollen, which meant she must have a worse infection. Also the PIC line in her arm had a pretty bad reaction and so they had to pull it out. They were also quite concerned because she was not coming out of sedation AT ALL. They had decreased the amount of sedative she was getting and it wasn't making a difference. So yea Sunday was pretty scary. Just when we thought things were looking up they seemed to be taking a turn for the worse. So they got her going on some more antibiotics, ran more tests to see if she did have an infection and we just waited.

Thank goodness our little girl came through, Monday was a completely different day. She looked amazing! Her swelling had gone way down and she was OFF the ventilator. Her oxygen requirements have continued to stay much lower since the balloon was done, which we are so grateful for. The best part was we finally got to hold her, it had been over a week. They also started her back on feeds, while all this was going on she was just getting nutrition through an IV. She started at 6 ml/3 hrs, when she left the U she was up to 42 ml/3 hrs. They start pretty low and then work up to where she was to make sure she can tolerate it. Nothing has shown up on the tests so they don't know why she was so sick. We're learning that there are A LOT of unknowns in the medical world, even with how far we've come in the last decade. Today is her last day on antibiotics, thank goodness - poor little thing has gone through 14 IV's, a Pic line and an arterial line in 9 days! She is such a trooper though, way tougher than her Mom and Dad. We got flu shots the other day and we could barely handle that.

The other day I read an article given by one of the leaders in our church. He said something that hit both Wayne and I strongly. There were times this past week that I just plead with God to fix things, because it seemed as though we were going to lose our daughter if He didn't do something right then and there. I just kept praying, "God I know you're here, I just need to see you" over and over again. This quote has helped me as I look back on what we went through and has brought us both comfort.

"Whenever these moments of our extremity come, we must not succumb to the fear that God has abandoned us or that He does not hear our prayers. He DOES hear us. He DOES see us. He DOES love us. When we are in dire circumstances and want to cry, "Where art Thou?" it is imperative that we remember He is right there with us -- where He has always been! We must continue to believe, continue to have faith, continue to pray and plead with heaven, even if we feel for a time our prayers are not heard and that God has somehow gone away. He IS there. Our prayers ARE heard. And when we weep He and the angels of heaven weep with us. - Jeffrry R. Holland"

As I wept for my little girl, it was such a blessing to know God and the angels of Heaven wept we me...I didn't feel so alone.

Through all this Kaelyn has still managed to put one weight, she's now 5 lb 10 oz! (And thats after the 300 gms she lost due to all the swelling)

Now for pictures of our little sweety and her simple nasal cannula and feeding tube!