"What would have become of me had I not believed that I would see the Lord's goodness in the land of the LIVING. Wait, hope for and EXPECT the Lord. Be strong and of good courage and may your heart (Ned) be sturdy and enduring.....Yes, Wait For and Hope For and Expect the Lord."

Psalm 27:13-14 (Amp)

Saturday, January 26, 2008

After Much Delay....

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

9 comments:

Jen said...

I continue to pray for you all. God has compressed so many miracles in our lives that we just have no choice but to blame the results on Him. Keep posting, it's amazing learning all of this information, it is actually persuading me into studying pediatrics. Thanks, I hope! God is so good!

K said...

Betsy,

Thank you for the very informative post... it is evident that God is still working in his little body and we will continue to pray for "small" surgeries with minor fixes!
We talked about you in the 9:35 group today, and we all agreed that by your obedience to this blog, and your committment to God in all that you do, it has brought each of us closer to HIM as well! We have found ourselves talking and walking with HIM so much more over the past several days and you are to be praised for sharing a part of you, so that others can clearly see JESUS!!!
We love you and hope to visit soon!
Kim, Blair and Grant <><

Nancy said...

Betsy, Travis & Ned,
I am praying for all of you every day and can see God's work through little Ned. Don't worry about Jack's behavior! He is just at that age where they try to test ever boundry. Trust me, He's a VERY well behaved little boy. He
is good as gold 99% of the time and we won't talk about the other 1%! This whole situation is hard for him to understand and he is just trying to make sure his 'safety net' is still there. Each time his unacceptable behavior is noticed and stopped, it is reassuring to him and lets him know that everyone is still there watching after him. Keep us updated on Ned and we will keep the prayers coming!

Amy Powell said...

We are praying for you everyday.Everynight when Gavin goes to bed he says a prayer for "baby Ned".It is so amazing how a two year olds prayer is so uplifting and is being answered by God everynight!
Much love,
Shawn,Amy,Gavin & Ella

sherry hefner said...

It was so wonderful to see Ned today during our visit. What a beautiful baby! He is about the same size that Paul was when he was born....how easily we forget how small and miraculous these little ones are.
Sorry that we missed you, Betsy, but we enjoyed seeing Travis. He is very proud of his precious family...as he should be.
Please know you continue to be in our prayers,
Sherry

Linda Ballard said...

Besty, Travis & Ned, We are praying for you each day. It was great to hear your news. I know you are proud parents. You will continue to be in my prayers each day.
Linda

Cam Dean said...

Mom informed me about this website and everything you have been going through, it is such a testimony to me through my studies to see how God can use medicine and those who enter the profession to accomplish His works...He works for the good of those who love him as his Word says, it is amazing to read this, thanks for sharing your faith and story with so many, it has really touched my heart and given me motivation in my education, I see how God has blessed me, and blessed those around me the the community I have grown up in...you will continue to be in my thoughts and prayers....love Cam

ngoldenrn said...

Betsy,
I continually keep up with your blog and am so humbled by your words, your courage, and your wisdom. You are such a witness, as you have heard many times before. Take care of yourself (that is the nurse in me) as we continue to lift you and your family up here at home. Ned is beautiful!
Love
Nicole Golden

Your Sunday School Class said...

We are so glad we got to come see all of you this weekend. Ned is so precious we can't wait to come see him again! God has truly blessed us to have you in our lives. Thank you for sharing your knowledge and walk of faith with us. We love you!
Love,
Your Sunday School Class =)