Take a breather

Poor girl. Let me tell you. This kid is incredible. 

Right before her last surgery, Amelia just suddenly quit taking any milk by mouth. She was doing really well and then just stopped out of no where. Speech therapy has always said that babies quit eating when something isn't quite right. Well something sure wasn't right. Since she had her last surgery, she has been very touchy. The second you touch or move her, she gets really upset. Her fussy spells would lead to her SATS dropping and her having "blue spells", she would turn purple or blue. They were having to slowly (and I mean slowly) wean her from the narcotics that she was on. When they would take her down on one, they would have to up another.

The last couple days her stridor has been getting worse. It was painful to hear, I can't imagine how painful it was to have it. You could tell that she was working really hard to breath. When she was relaxed, she was quiet, but when she would wake up just a little, her stridor would pick up. Yesterday, she was spiraling out of control. It had been a full day off of one of her main narcotics. She wouldn't calm down. No amount of morphine was getting her calm. They decided to do a bronchoscopy to get a good look at her airway. This meant, once again, sending her to the OR with a giant team of people. 

What they saw was that her vocal cords were both paralyzed. It'ls typical after her surgeries for one to be paralyzed, but not both. BUT since she was put on ECMO through her neck, the right vocal cord has been paralyzed. They were practically close, just a small opening for a small amount of air to get through. Her surgeon said that she was basically being suffocated. As if having half a heart and multiple heart surgeries wasn't enough, she was being suffocated by her own vocal cords. So the only logical decision was to do a tracheotomy. She now has a small plastic tube in her neck. Once everything calms down, they'll put a cap of some sort called a nose that will humidify her air. Right now, though, she is hooked up to the ventilator. 

This explains why she was so touchy, why she wasn'lt coordinated with eating anymore, and why she was taking so long to wean off of medicine. Basically the more she was weaned, the more awake and aware she was that she couldn't breathe. The hope is that now that she can breath comfortably, she will eat orally. If she can take in all her feeds, consistently, we could possibly go home. I have to be honest, I love the comfort of knowing that the best doctors are just a short walk away from her. I would love to go home, though. We'll see how she does. The track she was on, was putting her Glen surgery off for a while, because she just wasn't getting better. NOW, she could go for her Glen a little sooner because she is going to grow better. She was working so hard to breathe, that she was burning a ton of calories. They had to fortify her milk a ton so that she would gain weight, but now they think they will be able to go down in calories, which will be easier on her tummy. 

You know, as soon as I heard about a tracheotomy, I was really sad, but this is going to solve a lot of problems hopefully. It's not ideal, but we will get passed this and be much stronger on the other end. As far as how long she might need the trach, it's up in the air. She could need it for a couple weeks to a year. All we need is for one of her vocal cords to start working again.

Praise God that she has come this far. Her surgeon said that he was shocked that she made it this far with that small of an airway. As a Norwood baby, that's impressive. We knew she was strong, we didn't realize how strong. God is so good. When times get tough, like yesterday, it's hard not to be angry. I find myself hiding, crying, and being so bitter about all of this, but I'm reminded that God is so big and is carrying us. I'm so grateful for everyone around us. Thank you for loving us and praying for our sweet girl. We appreciate you all.

Prayer requests: 

We want this to solve all her problems that the doctors couldn't figure out.

Eating!! We want her to eat by mouth, like no ones business! I don't want that yucky ng tube in her nose anymore and if we could avoid a gtube, that would be great, too! 

Love y'all, 

Kelly