I apologize for the time delay between the last post and this one. I typically try to post at least once a night, but Jack was up here with us last night and that kinda threw a wrench in things.
Ned is still doing very well. They believe he will be completely off all of his blood pressure medications by this afternoon. He is tolerating the medication decreases really well so we've been very blessed by not seeing any major changes in his stats in the past two days following his surgery. The neonatologists thought they saw a bit of bowel back up in the chest cavity which would mean that his diaphram patch had come loose, but the surgical team has looked at the x-ray and firmly believe it is the angle of the x-ray itself. They seem very sure that there is no way the patch has been compromised as they felt they had plenty of tissue to which it was adhered. They will continue to monitor it to be sure, but I'm just praying that this will prove to be a non-issue because that would mean another hernia repair surgery. Please keep this in your prayers.
They said this afternoon that they expect that the cardiologist will perform Ned's heart surgery either next week or the next. They are still waiting to perform another echocardiogram to look at his heart now that all his stomach contents are out of the way. There is some chance that the aorta may be seperated rather than just a narrowing which would make the surgery a little more complex. Dr. Adamson (the pediactric surgeon) doesn't think that is the case and we're basically hoping that the less invasive heart repair will be an option.
Now that Ned has gone through his first surgery, he is much less sensative to light and sound. I can now go in and talk to him without causing his blood pressures to drop dramatically. Yesterday, while I was visiting, I was singing to him and the Lord really revealed something to me. I was singing:
Lord, you are, more precious than silver,
Lord, you are, more costly than gold,
Lord, you are, more beautiful than diamonds,
and nothing I desire compares with you.
For some reason, the end of that song really hasn't ever resonated with me, but I am coming to an understanding that getting what I want from God isn't nearly the blessing as getting closer to God and gaining a better understanding of his character.
We also met with the geneticist yesterday who wanted to look at all the congenital defects to decide whether or not she thought they were indicators of a much larger genetic disorder of some sort. After going through our history, she said she didn't see any markers for a major disorder that could make it impossible for Ned to recover from the defects we are now aware of. She couldn't be sure that he wouldn't have something that may cause him to be developmentally behind, but that isn't my concern. I understand that I will praise God to be allowed to raise Ned with whatever gifts He has blessed him with. So, for me, just knowing that there wasn't some major disorder that was going to make survival basically impossible for him was a HUGE blessing for me!
Several months ago, God revealed to me an application for a verse that made so much sense to me and has helped me so much through thinking about both Ned's repair and the general disarray our family is experiencing. Jack's behavior is terrible....I guess everything in his world is completely upside-down and he's really pushing his limits and being as ugly as he knows to be. I feel really guilty about leaving him to cope with all of this on his own. But there is a verse in Revelations (I'll look it up later and give it to you, but my computer is really slow right now) that talks about how God stores up our prayers and they are like incense to Him. I always thought that was such a strange concept, but as Jack got older, I understood more. When he would be playing and tearing his toys apart, I would notice him trying unsuccessfully to put them back together. I knew he would eventually get frustrated and bring them to be completely distraught and crying. But, I loved that he knew I could and would fix it for him. I loved that he trusted me to fix his most overwhelming problems. And what seemed huge to him in his world with his little understanding, was a simple task for me to correct for him. I think that is why our prayers so please God, fixing them for us is an easy task and he loves to help us in our time of distress knowing that we have brought our biggest concerns to His throne believing He can and will fix them. So today, I know that God can not only repair Ned's little body, but he can also easily help Jack and Margaret find some comfort, peace, and normalcy in our new, chaotic environment. I'm taking comfort in that today.
That's all I have for now. Everyone's prayers and emails have been so uplifting and the amout of support and love we have received has been tremendous to say the least. Travis and I are completely humbled that so many people have prayed in earnest for our child. Individuals, groups and entire churches whom we have never met have contacted us to let us know that they are fervently praying for our little Ned. I thought this little website would help some people know what was going on with him, but I never could have dreamed that God would use it in the ways that He has....ways only He can. As always, He gives us more that we need or expect and all his for His glory. I have received lots of emails concerning my faith and I just want to say that my faith has been made strong because God has shown Himself so clearly and that it was in my humanity and weakness that He was able to be so mighty in my life. He has planned all the days of my life and how He has chosen to work in my life is in no way an indicator of anything I could ever be outside of Him. I will tell you all soon how and when he started preparing me for this journey....looking back it is all so very clear to me now, but I believe I'll have to wait till tomorrow. Some of my Sunday school class is here to see Ned and I need to go meet them....how blessed am I that a group of college kids would drive 3 hours to come look upon my child for whom they have all prayed! God is so good!
Betsy, Travis, Jack & Ned