Aimee and I just got back from the hospital and right now Kayleigh is in a somewhat stable position. She is still breathing hard, desatting and gets very irritated by any touch or movement. The doctors are not quite sure what the cause of this is yet, but they are treating her as if she has an infection of some sort. If that is ruled out, then we continue to look for problems.
Her echocardiogram came back early this morning and her pressures were as high as they were before her surgery, which is not a good sign at all. Her pressures were in the high 70's during her first echo. Since then, the pressures have dropped to the low 60's, which is better. We are not quite sure what a good baseline is since her pressures have yet to come down all the way. The other day, I believe her pressures were in the low 50's or high 40's. Don't quote me on that though.
The x-rays came back that Kayleigh's stomach was very distended and full of air. That could either be from the fortifier or the heavy breathing she has been doing. One thing that Aimee and I noticed is that Kayleigh was taking all of her bottles right after her heart surgery when they were feeding her plain breast milk. When they started to fortify the milk with breast milk (1/1), she started have problems finishing her bottle every other feeding. The day before yesterday, they decided to change her ratio even more, (2/1) fortifier over breast milk. Then she was really struggling even more to take all her bottles and then this problem came about. It may not relate to the issue, but it could possibly cause some kind of trickle effect. I know how important the fortifier is, but we have had issues before and it is just easy to blame everything on that. Our doctor said that no matter what, when she starts to feed again, we'll start her off with plain breast milk to see if that makes a difference.
Our NICU primary nurse was taking care of Kayleigh early this morning and said she was in bad shape when she came in to the NICU. When she says things looked bad, they look bad and that is a scary feeling. Kayleigh was breathing so hard and struggling to keep her sats up. They went from .1 liters of flow to 6 liters of flow just to get her sats in a comfortable place. Our nurse suctioned Kayleigh's nose out and it helped with her sats a little, but only for a short time. Kayleigh has been on Lasix and the x-ray showed no sign of build-up in her lungs that was causing the problem. We will just have to wait and find out what the blood culture says.
We can only pray that this was something minor that can be fixed. The scary thing is no one knows what it is yet. It could be a heart problem, food problem or an infection of some sort. The first results of the blood culture comes back within 48 hours, so hopefully that will point us in the right direction. In the mean time, please keep the prayers coming!!! We know how awesome the power of prayer can be by the amazing miracles God has done so far.
Aimee and I have been more scared than ever right now because this just hit us so hard, and out of the blue. I know that coming home is further from our site, but all we want is for her to get better. This stress is taking it's toll on us emotionally and physically, but the reason Kayleigh is a fighter is because we are fighters. We are going to be as strong as we possibly can be for her and that is all we can do.
I pray for everyone to back us up and let's continue to fight this fight together through prayer, so we can bring our little girl home someday. Whether it is in a week or five more months from now, if God's plan is to use Kayleigh to touch that one certain person, then we will bust our tails to make that happen and spread Kayleigh's story until our job is done. So reach out to your family, friends, churches, and co-workers and let's do the will of God together so Kayleigh can come home soon.
Thank you for ALL so much for your prayers and please keep them coming!!!
The Freemans :)