Natalie got her sutures out yesterday. She is looking better every day. We are still working on her taking everything by bottle versus the feeding tube.
We have start learning how to use the feeding tube just in case we leave the hospital with it. They are getting were they want us to do everything, which is good...one step closer to leaving the hospital until next surgery.
God has blessed us with Natalie and given us a miracle with this past surgery being so successful. Thank you all for your constant prayers and support, Larry and I feel so overwhelmed with your blessings.
Hi Libby,
ReplyDeleteMy name is Jamie Snyder and I'm from Amarillo. Shanna Collins from the AHA has been mentioning you for a couple of months & she gave me your blog. My son, Kaston, has Tricuspid Atresia also. He's had the Glenn (age 6 mos), the Fontan (age 22 mos) and a fenestration closure (age 3 yrs). Dr. Zellers is his cardiologist also! His surgeons were Dr. Nikaidoh & Dr. Leonard.
Let me just start off by saying that our prayers are with you and your family. I read every one of your posts, albeit teary eyed, and it was though, at times, that you were writing the very same words I was writing just a few short years ago! Although our hospital visits were fortunately shorter, I can understand so much of what you guys are dealing with right now. And there are things that I cannot even begin to comprehend - like being away from home for so long and Natalie being in the hospital most of her life thus far and everything being so uncertain at times.
You already sound like you're a pro about all of this and I admire your determination to let go & let God! That's what I had to do. Like you, I was a planner, master organizer! Boy did the Lord show me that I was no longer in charge! I went kicking and screaming, but I finally got to the point, also, where I finally knew I couldn't do it anymore and just allow God to work. I still don't get it all, almost 7 years later, but have accepted that "it is what it is" - our family motto!
Although I have yet to meet you, I can tell that you are a very strong, positive, God-fearing woman. Very much admirable despite your circumstances.
Shanna said that you contacted her about the AHA. I, too, searched the AHA upon Kaston's birth & made some really good contacts there, but it didn't really fulfill what I was looking for. So me & a friend of mine with a heart baby (she was in Dallas for 3 1/2 mos) charted a chapter of the Mended Little Hearts, which is affiliated with the AHA. It's called the High Plains Mended Little Hearts. We just got it up & running this year and are still searching out people that we can minister to. We have a facebook page, so when you get a chance, look us up! Our first function will be the AHA Heart Walk on October 17th.
I started looking into forming a support group right after Kaston's Fontan because I had NO ONE to talk to. But since I had "been there, done that" I felt that maybe I could help someone else going through those first stages of beginning a life with a child with CHD. It's a hard road, believe me, but all the well worth it! I hope that we can be of some help to you and your family in some way.
Please know that I will look forward to your posts and Natalie and your family will be in our constant prayers.
Many blessings to you and your precious family!
Jamie Snyder
mom to Korah, 10 - heart healthy
and Kaston, 6 - tricuspid atresia, pulmonary atresia, HRHS
oh yeah - I have a blog set up on carepages.com. Kaston's page name is: kastonsnyder. The posts go back all the way to his Fontan back in 2004. I only update every few months now. There's some picks of our family. You'll see how very normal of a life Kaston leads now - I see that in Natalie's future!
Another bit of info I forgot - If you want email me, please feel free. Our email address is AmarilloTX@mendedlittlehearts.org.
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