I would assume it would come as a surprise to anyone that only knows me through this blog to find out that I’m an extremely private person. I do not regularly share my heart with complete strangers. I find family matters to be especially private. I, like most of us, like to hide behind the “everything’s perfect” mask . I would much prefer to go on acting as everything is going great. As the situation with KC progresses, I wish more than ever I could quit telling her story, but I still feel led to write about it. I’m not sure why, I’m not sure that I’ll ever know why God is leading me to tell this story, but here is our latest update:
When we got the news that Kennedy has down syndrome, it was very tough. Your mind wanders to all sorts of places. As a Dad, you have this natural instinct to protect your family. I kept imagining situations Kennedy will be faced with, and just felt the need to protect her. I could picture children teasing her because she looks a little bit different than them. I could picture adults judging her because she behaves a little differently than other children. I could picture all these different scenarios in which I would be forced to defend, or stand up for her. Through all this, I have a different relationship with KC at this point her life than I did with my other two girls. With Audrey, this bond was made when Dr. Long handed her to me (Still not sure why he didn’t hand her to Joy). I looked at her and imagined her becoming the first women President of the U.S, and thought about the all the boys I was going to have to scare off. With Syd, this bond was made when Joy handed her to me. I imagined her playing basketball in the Olympics, and winning homecoming Queen. With Kennedy, this bond is already made, and she isn’t here yet.
On Friday, we went to ROC (our high risk doctor’s office), and our main hope was that the fluid that was around KC’s stomach, heart, and lungs had not increased. If it had increased, there was a good chance that the doctor’s would recommend inducing labor. At the time, we were not sure what to think of that, but we knew that a healthy baby born at 31 weeks would have a tough time surviving. With Kennedy being unhealthy, we knew that her chances would be even less.
We had our sonogram appointment; afterwards the doctor came in to talk about the findings. He said there were minimal changes in the fluid levels, but wanted to go ahead and start the steroid shots to build up Kennedy’s lungs, and then we would come back the next day for a second dosage of steroids, and induce labor. Obviously, Joy and I are not doctors, so we really had no need to wonder if this was the best idea. So they send us to another room to start the steroid shots. In the meantime, something behind the scenes happens(we still don’t know exactly what), and a nurse comes in but rather than giving Joy steroids, they do a stress (fetal non-stress) test on Kennedy. I believe the test is to check her heart rate, and make sure the womb is still a safe environment. Kennedy passed the test relatively quickly, and a couple doctors came in to discuss our options. One of the doctor’s was from the NICU, and the other was a doctor at ROC.
The doctor from the NICU told us that based on Kennedy’s current situation, if we delivered today there was a 1-2% chance that Kennedy would survive. The newest issue with Kennedy, is that her heart, specifically the right side, is very large. Because it is so large, it is basically restricting her lungs from being able to breathe. Obviously, in the womb that is not a huge deal, but once that umbilical cord is cut, her lungs become vital to her ability to live.
Our other option is to leave her inside, but there is risk involved there too. Kennedy has non-immune Hydrops, which is making the womb a very dangerous place for her. These Hydrops are the reason that the doctors want her out in the first place. If Kennedy is brought into this world, she has a very low chance of survival, but left in the womb, there is a chance she could not survive. It’s a very difficult place to be.
If I put my faith in science, or in medicine, or in doctors, or in statistics, at that point, on Friday September 14, 2012 I would have consider her life over. I am so thankful that I can put my faith in the God of the universe. I am so thankful that I serve the very same God that raised Lazarus from the dead, the very same God that allowed David to defeat Goliath. I believe that God will also deliver KC into this world.
My favorite Bible verse is II Corinthians 12:9. I am pretty sure if you go to my high school yearbook, this would be the verse I put down as my “life verse”.
But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me.
When I was in a transitional stage in my Christian life (really life in general), I remember hearing my brother preach on that verse. It was very settling to me. Like many verses, as I grow older, and my circumstances change, my interpretation of a verse also changes. This verse has really been comforting to me these last few weeks, because when it comes to Kennedy, I am completely weak. I have no ability to protect her, or provide for her. I am so thankful that Christ’s power can be made perfect in my weakness.
Joy and I took the girls to Disney for the last few days, and today we were headed back to Jacksonville for a checkup on KC. As a Christian, I am not a big believer in coincidences. I believe God does, and allows things to happen for a reason. Nemours clinic is running an ad campaign, and they just have a bunch of different pictures of children with the word “Believe”. Literally, I must have seen 30 of these ads on the way home today. Maybe it is just me searching for a sign, but I do believe that God is going to heal our precious girl.
We went in for our checkup this afternoon. I hate to limit God with my prayers, but I often find myself doing just that. I am praying to a God that is powerful enough to heal her, but sometimes I feel like that is asking too much. Regardless, my prayer this afternoon was that we could just not have any more bad news. I prayed specifically that her fluid level would have remained the same, and her heart would have not be any larger.
We went through our normal routine. The ultra-sound tech came in and looked at Kennedy, she gave Joy and I several sympathetic smiles, and then goes to get the doctor. We then go through the longest part of the appointment where we wait for the doctor to get in and talk about what is going on with our girl. While we waited, I continued to pray that she would not be any worse than she was on Friday.
Finally, the doctor came in. She looked through the sonogram pictures, and for the first time in about 6 weeks she gave us a real smile. “Very stable. Looks good, I’ll see you guys next week”. Joy and I both let out massive sighs of relief. Thank you God! Today no news was great news.
Joy and I continue to covet, and appreciate all of your prayers. We have been blessed in all sorts of ways by so many of our friends and family, and we truly appreciate every one of you. Thank you, as always for every time you bring our sweet girl before our creator.