There was quite a rumbling in my section of the NICU today. I heard these words from a nurse to another nurse, "a CDH baby was just born." It was suddenly a busy bee-hive. The CDH must be severe because the ECMO team had the ECMO out and ready. They were just waiting for the word. As I walked past them, they all nodded at me as we all quickly replayed the eight long days we lived together back in April.
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Check out this week's Newsweek with Karl Rove gracing the cover (smile). On page 53 there is an article entitled "Babies Who Take Viagra: The drug for men with sexual-performance problems also helps some kids with a life-threatening disease." The one page article is about how Viagra is being used to treat pulmonary hypertension in babies/kids. Sound familiar? That was a pretty cool discovery as I started thumbing through my Newsweek.
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It was a hard day with Ira today. He was cranky much of the day. He looked and sounded like he was in pain. He still isn't taking the bottle and because of that the doctors decided to keep Ira on the CPAP full time and work on getting him bottle fed. Trying to wean him from the CPAP and attempting to get him to eat from the bottle was just too much work for Ira.
We requested to have a meeting with all of Ira's doctors and so that is in the works but is no small task to get them all together. We aren't real sure if they are all on the same page so it will be nice to sit down with them and hear what we are working for and what our goals are.
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Check out this week's Newsweek with Karl Rove gracing the cover (smile). On page 53 there is an article entitled "Babies Who Take Viagra: The drug for men with sexual-performance problems also helps some kids with a life-threatening disease." The one page article is about how Viagra is being used to treat pulmonary hypertension in babies/kids. Sound familiar? That was a pretty cool discovery as I started thumbing through my Newsweek.
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It was a hard day with Ira today. He was cranky much of the day. He looked and sounded like he was in pain. He still isn't taking the bottle and because of that the doctors decided to keep Ira on the CPAP full time and work on getting him bottle fed. Trying to wean him from the CPAP and attempting to get him to eat from the bottle was just too much work for Ira.
We requested to have a meeting with all of Ira's doctors and so that is in the works but is no small task to get them all together. We aren't real sure if they are all on the same page so it will be nice to sit down with them and hear what we are working for and what our goals are.
posted by jch at
7:20 PM
5 Comments:
I just showed Blakely and Jackson the picture of your kids. She said, "wheres Sophia?"
I think it helps her see who she's praying for as well. I know I like it.
steve
It's so hard to realize Ira is still having so much trouble. I want to pick him up and just walk out of the hospital with him, but the "head gear" tells me NO - he's not ready yet. He's so adorable, and looks so healthy, except for that. The stroll with Sophia looked like such fun, and I know Ira enjoyed it and was all eyes, not missing a thing. I hope you both are reading to him, if he'll let you. I can see Gram cuddling him, singing, and reading to him. That may be the last thing on your mind when you are with him, or you may have already done it alot. I pray your visit with all the doctors will be soon, and they will have encouraging words for you. Even though precious Ira still struggles to breathe and take the bottle, he has come so far. I am so proud of him and how hard he fights to survive. One of these days, those little lungs will grow enough where he won't have to fight so hard for every breath, and---you'll have a well baby at home! Sophia is going to be such a big helper for her little brother!
Still praying for you four, and Gram. I know Glo's been such a big help and encourager while there. Laura, I know your mother has been great, also. Aren't mothers and grandmothers just grand!
Praying for your peace to come soon. Love you much,
Aunt Weedon
Good idea for getting the meeting with all the doctors. I know in the last blog that you had talked about the possibility of home health versus the rehab hospital. I would highly recommend the rehab. You all will be blessed by going this direction. These nurses and doctors are trained in caring for the patient and the family. They understand long hard roads and are excellent in what they do. It is too bad that you can't come home to Texas : ) Baylor rehab and cook childrens have excellent rehab facilities for kiddos.
I am praying that the Lord will guide your decision. It is hard to know which direction to take.
Still praying.
Rebecca Leggett
We love you and are still praying! Thanks so much for the sweet thank you note - you guys have so much on your plate, you didn't have to do that but it was sweet. :-) We just wish we could be there to do more. We are praying for your big decisions about to be made for Ira. I wish no one ever to had to make such tough decisions but we will pray for God's guidance.
The all-docs meeting sounds like a great idea. From the very start, you guys have struggled to sort out the variety of messages you get from each professional, each of whom you trust and respect.
One question we frequently ask of the educational professionals who have worked with our kids is, "What would you do if this were your son/daughter?" In my hospital visits I encourage relatives of sick people to ask the same of their doctors. Some of them won't engage on such a personal level but others become very soft-hearted and generous with their counsel when they remember that this patient is somebody's little boy.
We love you guys. I'm sick of saying that... wish I could show it with a hug and/or a weekend of babysitting. (Sophia, not Jersey. And definitely, definitely, Ira.)
peace -- Katie
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