I completely forgot to share yesterday that while a new surgeon was evaluating Ned's wound from the CDH repair on Saturday, he called him "historical". I found this quite an odd statement about newborn child, so I prodded a bit. Dr. Duncan (the surgeon whom I had never met) went on to tell me that Ned is only the second child in the history of the world (very dramatic) to have both the CDH and the heart coarctation and survive without having to go on ECMO! For a breif moment I was beaming with pride, then he said, "I'm really hoping that this kid survives so I can submit an article on his case to the medical journals". Yes, that's correct, he said that his book report hinged on Ned's survival, that's why he was hoping Ned could pull through. While I could have been offended, we have had too many blessings to be petty at this point, so, of course, inappropriate laughter was my response. I just agreed with ole Dr. Duncan and said, "well, I'm hoping he survivies too, but not so much due to my interest in your paper." The most hilarious part of the whole conversation is that Dr. Duncan seemed somewhat offended that I wasn't as taken with his paper and he thought I should be....how funny is that? On a serious note, Dr. Duncan also said that if we had delivered at many other hospitals, they may have refused to perform the repair surgeries on Ned assuming that his chances for survial weren't strong enough for the risk or they would have performed the hernia repair first. Having that knowledge just confirmed to me how God had been leading and guiding us from the very beginning. He always knew where we would be best to deliver and He led us to exactly where we needed to be! How thankful am I that God loves us and lights the path beneath our feet!
Ned and I had a great day today. Not much changes for him, but I finally got to clip his fingernails. They were beginning to look dangerous! I'm unsure what maternal duties I can perform while Ned is here, so I wait for the nurses to give me the go ahead on everything. I am also starting to know Ned. Now that he is waking up more, I am able to read him and know his moods. I can tell when he is seeming uncomfortable and today, I could actually feel with my hand when he had some rattling in his chest and needed to be suctioned. Although all the doctors can feel and make that same determination, I typically have such dulled senses that I perceive this ability almost like paranormal 6th sense! I know it's really not that special, but I'm still glad to be able to assess his condition...it makes me feel more comfortable about when we take him home!
I think my little man enjoyed being held yesterday. This afternoon when I was holding his little head in my hands, he pulled to his side a bit by crossing his right arm across his body in my direction. I'm sure he was reaching to be picked up again! I can't wait until I can comply with his request!
God has been so good to give me peace and comfort. Even as we have taken some steps back with the vent and we are always vigilant for infections, I have been able to remain on the mountain top! I remember telling God that I would follow Him through the deepest, darkest valleys, but I was believing that He was going to bring us out on the mountaintop and when He did, I would sing His praises. If there is anything about this journey that is amazing, it is all God. His grace and mercy have carried us through a difficult time and taught us ( in a very real sense) that God is capable of calming all storms.
I remember the day I was on my way home from Shelby when Ned was diagnosed with CDH. There was a car in front on my on Hwy 150 with a bumper sticker that simply said, "The Power of God." I was praying that God would display his power to me and He has certainly displayed magnificent power during the past several months in my life! I am just so thankful that he allowed me to have this experience. When it's all said and done, my faith, my foundation, and my family will be strengthened because of the blessings we have expereienced during this trial. I think now that is how Paul came to be thankful for his sufferings.
My first view of the scar from the heart surgery....I'm completely impressed!
Love to you all!
Betsy, Travis, Jack & Ned
**Please continue praying for lung and heart health and a successful extubation next time around!
5 comments:
Hi there, your son is beautiful. These kids are so strong. My daughter had cdh, coarctation of the aorta too. She was born on the 13/10/07. She also has a vsd, and a cleft plalate. She was also 6wks premmy weighing only 1.7kg. I just read about ned being 1 of 2 in the world to survive without the ecmo. We are still in hospital in australia. She is doing really well. We have been there for 18wks already. Today she had a fundo and peg for her reflux and they also found a large hiatus hernia. She is one tough little girl. My thoughts are with your family. Im sure little Ned is a surviver, look how much he has over come already. Is it ok to add Ned to my daughters blog?
Kristy
Hilarious! You were so quick with your repsonse. I love it! Ever thought of publishing this as a book-so many people have said the same thing when your blog is mentioned. Your writing style is phenomenal and your testamony is awesome and it's already reaching around the world-Australia. WOW! HOW GREAT IS OUR GOD! Love ya, Krista
So, Dr. Duncan thinks of Ned as a bug in a jar kind of experiment huh. Well, if the doctors are amazed now, just wait until that little 'caterpillar' spreads his butterfly wings! After all, Ned is already 'flying' around the world! When you think about it, it is almost as if Ned is resting up in a little cocoon [crib] waiting to emerge.
Oh my goodness! I'm speechless! The only thing I can say is that I think that doctor is one of Cadenne's doctors! :-) We've definitely met one just like him!
Something I'm learning the reality of in a current Bible study I"m in is that "if we can do it on our own...it's not grace" So, it seems to me that God wanted to shed more grace in your life through this experience. After all...we'd move heaven and earth for our kids, right? but this time it was completely out of your hands...a perfect opportunity for PURE GRACE.
Julie
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