Future procedures

Hello! 

Long time no post, right? 

Amelia has been busy this last year! She had her g-tube removed after a super easy wean from it! I couldn't be more proud of her!

She turns 2 next month!! Holy moly!

This last year and a half has been nice, having her at home, and *almost* forgetting that she has half a heart. I say almost, because OBVIOUSLY you cannot forget, but we have been living a normal life. What a wonderful normal life it has been! I am so grateful to God for this time we have had, just being boring people, doing boring, everyday things. 

Since Amelia is turning two, we are starting to have conversations about her next(and hopefully last) surgery. Boooooooooooooooo! Waaaaaaaaaaaaaaaaaaah!

At the beginning of this year, she had a cath. During the cath, they saw that her LPA(left pulmonary artery) was really small. They tried ballooning it, but it wouldn't stay the size they ballooned it to. We were hoping that in this next year, that it would grow on it's own. Unfortunately, it hasn't. She had an MRI last month, to get an idea of where she was, heart function wise. The LPA is still very small, mostly due to the reconstructed Aorta being so large and squishing it against her heart. The MRI showed VERY little blood flow thru the LPA, resulting in very little blood flow to the left lung. As a result of the small amount of blood flow thru the LPA, she has started growing little collateral veins, that think they're doing a good job, but they're confused. haha

Anyways, all that to say, she is in need of a stent in her LPA. The cardiologist who will perform her cath, showed us a stent. It is a metal, mesh tube. She will need a few more caths over her lifetime to dilate the stent to the size the LPA needs to be. 

(From her MRI visit)

We were planning on having this done in February, but she is starting to show signs of needing her next surgery, so the cath needed to be moved up to before Thanksgiving. This time last year, her SATS were upper 80's, low 90's. The last few times she has had an appointment, her sats have been sitting in the low 80's upper 70's. There needs to be 6 months between her cath and her surgery, so we needed to move the cath up, so that we aren't backed into a corner this Summer and she isn't able to have the surgery yet. If that makes sense. It's hard to understand all the medical jargon, let alone repeat it for everyone else to understand! haha

We knew she needed another surgery, we knew this was coming, I'm just really sad. I don't want her to have another open heart surgery. I just looked at her scar the other day and thought, "man it looks so much better than it did just 6 months ago" but then remembered that it's not done yet. I am just remembering what it's like to be that kind of scared all over again. We've had a year an a half of relaxed(-ish) times with Amelia and I am so grateful for that. We are continuing to pray for things to go really well. I would love for Amelia's cath to go well, and for there to not be any emergencies between now and when she has her surgery. I would love for Amelia to not be really sick when they do the surgery. Things could be worse, the circumstances could be harder. I'm reminding myself that everyday. 

Her cath is this upcoming Monday. She will be staying one night. Would y'all pray that everything goes well and that we would have a good idea of when she will need her surgery? We love and appreciate y'all SO MUCH. 

Love, 

Kelly

For your viewing pleasure...

This kid is SUCH a joy and blessing to everyone who meets her. 

CHD awareness week. Being a heart mom.

With CHD awareness week coming to an end, I wanted to end on a personal note.

How does this all affect the mom's and dad's? Our sweet little babies are the faces of CHD, and adorable faces at that, but what about the mom and dad trying to hold it together?

When Amelia was diagnosed with HLHS, I had no clue what was in store. I mean I knew the facts, I heard the stories, but no one can prepare you for it.

Since Amelia's birth, I have nightmares. I wake up thinking that she's still on ECMO, or that she is in the middle of an episode that she won't snap out of, so they try to attempt intubating her, with no success. I wake up thinking we are still sleeping in the hospital. As you can imagine, I also have the gut wrenching dreams that she is no longer alive, where a dr tells me she died, or that I am at her funeral.

At least once a week I wake up thinking Amelia is really sick again.

She isn't, and praise God for that! I get to thank God every time, because she ISNT sick anymore.

I will always worry about her. Recently I watched a movie, where someone's daughter died while giving birth because she had a CHD. I hear those things and can't get it out of my head. I am constantly thinking about her upcoming surgery.

She will always have half a heart and will always run the risk of something going terribly wrong. I am always scared.

Amelia's lungs aren't great, her LPA is small, and don't even get me started on her SATS taking a decent dip in the last 6 months. There will always be something to worry about.

That said, I have a large community of women who live the heart mom life. They know and understand and I am so grateful for them. When Amelia was diagnosed, an organization called Sisters-By-Heart sent a care package to us and gave us links to blogs that gave us hope. If you're searching for a way to help the heart moms and dads, www.sisters-by-heart.org is an awesome organization to give to, because they were the first glimpse of hope we had.

If you're looking for ANY organizations to give to I recommend giving to your local Children's Hospital with a Pediatric Cardiology unit. Furthering research and bettering equipment in the units is important, because it raises our chances of bringing our babies home. Your local Ronald McDonald House is also a great place to give to. 

I am not looking for sympathy, I promise, just want to give a clear picture of what it's like to be a heart mom. We are so grateful for Amelia and would choose her every single time. She brings us such joy. 

Thank you, everyone, for your continued love and support. 

Love, 

Kelly