Flashes of hope

Flashes of Hope comes into children's hospitals and takes beautiful pictures of children with Cancer or other health issues that keep them in the hospital. They're raising money to help fund cancer research. This organization came in our hospital room, set up a studio, took gorgeous pictures, and gave them to us for free!! We got a leather bound book with 2 8x10 pictures. We got a stack of 5x7's and a CD with all the pictures taken. We also got the rights to all the pictures. 

They're so sweet, right?! To be honest, they make me a little sad. She was SO sick when these were taken. This was the day before she had the tracheostomy. She had morphine right before they were taken because she wasn't breathing well. They make me sad, but also so happy, because she looks a million times better now. These show her progress. It's funny how God's timing works. I was in need of some encouragement today. 

Love, Kelly

The next steps

Since Amelia got her trach, she has been doing so well! Her doctors wanted to be able to send her home. We were starting to talking about in home nurses and all the equipment that we would need at home. They were thinking that in a couple weeks we may be ready. Truth be told, that scared me a lot. Of course I want to be at home with her, but not at the expense of her life. 

All of her specialists got together for a meeting and wanted to talk about pros and cons to sending her home. They decided that it's the safest option to keep her at the hospital. SO the tentative plan is...

March 10 she will have her vocal cords looked at again, to see if the function has come back at all. It's not likely, though, but it doesn't hurt to look. 

March 15 she will go to the cath lab to have a heart cath done. They do this for all babies that are about to have the Glenn done. 

April 1 she is scheduled for her Glenn. This is huge. We have an end date. This could change, but its on the books and we are excited to have a plan.  Maybe we will be home by mid April!! Once she has the Glenn, the chances of anything going wrong, drops dramatically. Right now, she has that shunt in her heart, but the Glenn will get that out and we won't have to worry about it clotting again. 

I couldn't be happier, honestly. It does suck to have to spend the first four months of Amelia's life in a hospital, but she has life and for that, and I am so happy. David and I were talking about how, one day, this will just be a memory. I can't wait! 

Prayer requests:

*David and I are starting to have a really hard time being apart. It's not fun, having to say goodbye all the time and only being able to see each other one day out of the week. 

*I miss Emma a lot. She is learning so much, so quickly, and I am missing a lot of it. 

*Amelia is doing so well! PRAISE GOD! She is growing and doing cute, baby things.  We need her to continue to grow for her next surgery! 

Thank you, everyone, for your prayers. We love and appreciate all of you, so much!

Love, 

Kelly

Trach you very much!

Amelia before her tracheostomy was in pain, couldn't breathe, and was so touchy that nurses had to rush diapers changes with fear that she would stress her heart from getting so upset.

Amelia after her tracheostomy is a completely different baby! I don't have the words to explain fully, what it is like to not have to see your baby in pain everyday. I would leave the hospital to shower and fear that when I got back, she would be surrounded by doctors, who were worried about something. Any time I was away from her, I worried about my phone ringing and telling me that she was having more problems. This kid deserves a break. You wouldn't think that having a trach put in wouldn't be considered a break, but it has saved her, I think. God is so good. I have been praying for peace and comfort for my sweet girl, and God provided just that. 

Since her trach was put in on Friday, Amelia has done so well that her doctors are talking about discharge. Can you believe it? Just last week, I would have never imagined Dr. A even considering it, but he is confient that she will do well. IF this happens, it won't be for another month or so. There is so much that has to come together to get a baby like Amelia, home. She is going to need mutiple machines to check her weight, SATs, provide humified air to her trach, a feeding pump, and a home nurse. That's a whole lot of crazy. 

Dr. A would love for her to wait until 6 months old to have her Glenn surgery. Before, we were going to stay in the hospital until 3-4 months old and have the surgery, but Dr. A said that it's best to wait until 6 months. That way she is that much stronger. 

In order to get home, girlfriend needs to eat. She had a swallow study done on her yesterday and they saw that she silently asperates. Meaning, she asperates the milk without coughing. Everyone thinks that she needs to get the G-tube. If you remember, the G-tube surgery is the one that she went for, and came back on ECMO. They plan to do things differently, plus they have her on two blood thinners this time around. So, less of a chance of clotting. You know I am scared out of my mind, but since it is something that she needs, it only makes sense to get it done know, rather than when she is weaned from her pain medicine and have to go back on it. 

I am in no rush to go home, but the idea of being home with my WHOLE family, makes me want to cry happy tears. 

Prayer requests:

-We just need her to keep up the good work. 

-Her g-tube surgery is next Tuesday the 11th, so if everyone could remember to say a prayer for her, that would be great!

Thank you, everyone, for your continued prayers. They're all so appreciated and loved!!

Love y'all,

Kelly

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