Sunday, March 27, 2011

Meet Miss Aly Jean, Take 2 - and meet cutie-pie Chase while you're at it!

2 weeks ago, you may remember here, where I asked for prayers for Aly Jean's fontan surgery, which was slated for the next day. Well, because getting all geared up for your child to have open heart surgery isn't nervewracking enough, Aly Jean's parents got the added bonus of having her surgery canceled at the last minute! I mean, really, at the last minute - they were waiting in pre-op for the anesthesiologist to come and get Aly, and instead a nurse practitioner walked in to tell them that her surgery had to be canceled and that they would have to reschedule. It absolutely was God's timing (they found out later that her surgery was canceled for not one, but two newborn heart transplants that day - WOW, and sweet Aly and mom and dad all had the stomach flu later that week), but talk about an emotional roller coaster. Anyway, she is now re-scheduled for tomorrow morning and is the only surgery on the schedule, so surgery should be a go. PLEASE join me in praying for a successful surgery for this sweet girl, no post-op complications, that she is home soon and peace and comfort for her parents!

Now, on to Chase. Meet Chase... Talk about a cutie, right? He's 17 months old and in between his Glenn and his Fontan, just like Bodie. He's having a cardiac catheterization this week. In the heart world, we kind of sniff at caths, like "meh, what's the big deal? Just a cath..." But folks, they're serious. Sure, they're not open-heart surgery, but they're not exactly non-invasive. They involve cardiac anesthesia (Chase will be put on a ventilator), drugs, and injecting dye into the veins leading to the heart. Sometimes, they're done just to get a good picture of blood flow in the heart and pressures around it (both of Bodie's have been this type), and sometimes, like in Chase's case, they're also done for intervention purposes (they have noticed a narrowing in Chase's pulmonary artery, so are intending to balloon it open during the cath). It's rare to have complications during caths, but it's not unheard of. So, please join me in praying for Chase this week, that his cath is super successful and that he's home QUICKLY!!!

Also, it seems that there are a lot of sweet kids in the heart community in need of prayers right about now. If you wouldn't mind praying for some of our dear heart friends, I'd really appreciate it:

1. Milosh: This little guy has a really rare condition called Barth's syndrome and has had a rough first year, just like Bodie. (His mom and I met on a message board when we were both pregnant, although she didn't know about Mishi's condition until after he was born). Mishi had been doing quite well but recently took a turn for the worse and has been in the ICU on both ECMO and/or a Berlin Heart for 2 weeks now. He is awaiting a heart. He is taking baby steps forward, but really could use a lot of prayer that his body keeps fighting until a heart is available.

2. Annabelle: Annabelle is 8 months old and has spent all of that 8 months in the hospital. She has HLHS and had her Norwood, but was not a candidate for the Glenn, due at least in part, to a leaky valve. Please, please pray that a heart comes for her soon.

3. Olivia: Ah, sweet Olivia. She is an "interstage" kiddo (between the Norwood and the Glenn), and just like Bodie, has really given the doctors a run for their money. She has been in and out of the hospital and bounced back and forth between the ICU and the step-down floors. It's kind of eerie talking to her mom Katie, actually, because everything she is feeling is exactly what I was feeling when Bodie was going through everything he went through last year. The latest thing they've discovered with Olivia is that she has a severely leaky valve. They're going to try to fix it, but if they can't, she'll probably have to be a transplant candidate instead. PLEASE pray they can fix her valve and get that sweet girl HOME!

4. Dylan: Dylan is a cute little newborn HLHSer who had a Hybrid Norwood because he was just too little to try for a full Norwood. He's stable, but is having complications on and off. Please pray the doctors can best figure out what's going on with him and get him home soon as well.

5. So many sweet kids waiting for heart transplants: Harrison and Kennedy in particular.

6. All the new babies coming: With Sisters by Heart, I find a lot of newly diagnosed moms and feel like all of these women really need extra prayer. The time leading up to the birth of a special heart kid is such a tough time. So many emotions. Please help me pray for all of these parents as they get ready to meet their little miracles. Thanks as always for all of your prayers! Photobucket

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