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

Livin' the trach life

I thought I would be interesting to show everyone what our house is like, all because of the tiny trach. 

These pictures of of her room. Just completely jam packed with supplies. 

This is her closet. We have the dresser packed with supplies that we use daily. The rest of the boxes are things we need to change out weekly. 

The dresser is where we do all her trach and g-tube cares. It's also where is dress her like a sweet little doll. ❤️

Sorry this one is blurry! More supplies that don't fit in the closet!

Syringes!!!(I seriously could have rolled around in these, I was so excited to get them!)

This is our bedroom, where Amelia sleeps. She usually sleeps in her swing, but occasionally sleeps in her crib. The iv pole holds the feeding pump(she doesn't use anymore, yay!), and the humidifier system, and water. The box like machine on the ground is the air compressor. It pumps air thru the humidifier. It's also loud as all get out and it makes our room super hot. We had to put a window unit in our room, even though we have central air. The little machine on top of the air compressor is the pulse ox, it has to be hooked up to her while she sleeps. 

Here's Amelia, all snuggled in and ready for sleep. we still swaddle her, because it's easier with the tubing and all. Once her trach comes out, we will wean the swaddle! Wish us luck! Haha

It doesn't look THAT bad, it's just a ton of clutter. 

Here is Amelia's "go bag"!

It's pretty, huh? I hate it. Hahah 

The bag is beautiful, but you should see us trying to get out the door with this darn thing and everything else that we need. 

This is everything that goes in the bag. 

Suction machine, a million suction catheders, extra g-tube button and extension, diapers(duh, right? Nope. I have definitely left the house without them), saline bullets, trach nose, extra trachs(size smaller and actual size), sterile water, manual suction catheder(used with mouth), Baggie with a bunch of trach ties and stuff used for trach cares), a ambu-bag in the awful instance that we would need to do CPR, and a pulse ox machine. 

I realized after the photo was taken that her nebulizer wasn't in the picture. We NEED that. Seriously. It's a crap ton of stuff. 

This is her bag all packed and ready to go. The black bag is her oxygen. We have to have it when we leave the house, just in case. The back of her closet is full of them. 

This last picture doesn't include her bag of meds and milk.  

This is the living room. 

Same set up, but with a pack n play and a ton of baby toys! My house a.l.w.a.y.s looks like this! We try to keep it up, really we do, but it's hard!!

Y'all this is my life! I wouldn't trade it. I love my girls and am so blessed to have them. I would live in a ditch with them...but not really😉

Thanks for all the prayers and love. Amelia is due to get a bronch on the 8th of July. We are hoping to pull the trach the next day!! Jesus take the wheel, I'm so nervous!!

Love y'all!

Kelly

My biggest fear

Want to know something that I hate to admit?! 

Ugh!! I have been thinking about writing this for a while. I feel so convicted and selfish. But here it goes..

I want, more than anything, for Amelia to get her trach out. Like, I would go to the end of the Earth to get that stupid peice of plastic out of her throat. 

My fear is that she is getting scoped on June 26th and they will see zero movement. They'll likely say something like,"well, we will wait another 6 months and scope her again!" Noooooooooo! This is a huge fear of mine!!

This is why I am selfish, I want this more than anything, for my convienence. I am tired of being stuck at home, missing family gatherings, not getting to leave the house with my whole family, having to carry a giant freakin' bag full of "just in case" stuff every time we leave with her, worrying about her drying out, and emergency trach changes. I want to swim with her, shoot, I just want to be able to put her in a baby carrier and not worry about her trach being covered or her getting too dry. I don't want to be tangled in equipment every time I want to snuggle with her. I want to enjoy her being small, but she isn't small, she is a baby connected to a crap ton of stuff. 

Don't even get me started on what my house looks like because of the tiny peice of plastic in her throat. You would be surprised by how much she requires because of that thing. If I'm not constantly organizing, my house turns into a disaster, really fast. I can clean and organize all day, but if I sit down for an hour, it's an unorganized mess that damn near causes an anxiety attack. 

Soooooo, that's bad. I am a selfish jerk who has completely forgotten that this stupid peice of plastic....kept my sweet, girl alive. As I typed that, I started crying. It's very simple, she is alive, because of it. I didn't lose my daughter because  of that plastic thing in her throat. I am not a grieving parent. I am so lucky, no, BLESSED by this STUPID peice of plastic. 

I know that, before her appointment on the 26th, I need to accept the trach as a part of our lives. I need to be able to be okay if she has to have it for a while. Also, it's not in MY throat. Why am I so bothered? I can eat and drink just fine, without worrying about aspirating. She, on the other hand, is nervous about swallowing and doesn't take a bottle because of it. 

All this to say, I'm needing lots of prayers. I would love everyone to praying for healing of Amelia's vocal cords, but more so, I need prayers for a heart/attitude change. I need to go into the appointment, accepting the trach as a forever thing. 

Will you pray for us? We would SO appreciate it. 😊

Thanks, y'all!

Love, 

Kelly

First month home!

Can you believe it?! We have been home, almost a fourth of the time we were in the hospital!

It's been a crazy month, let me tell you! 

Amelia, apparently misses the hospital, because we have had to make a couple of (unplanned) trips back. Her heart rate is too high, her heart rate is too low, blah blah. 

She likes attention. 

Since being home, we switched her from the formula for chylothorax, back to breast milk! She doesn't spit up anymore! It's wonderful, living life with no puke to clean up, multiple times a day.  She is growing on plain ol' breast milk, so it doesn't need to be fortified. Yay! We are also able to do gravity feeds with her now. When she was on that formula, and even the fortified breast milk, she wasn't tolerating being fed too fast. She was hooked up to her feeding pump for an hour and a half. Now her feeds are only a few minutes! Also, wonderful!

We are going to have full time nursing, starting June 2nd. My mother in law has been doing a couple days a week already, but she will be able to back off now that they have another nurse to help! She's an incredible woman, that Maria! 

Emma adores her sister! She loves to help and to give kisses. That's made it easy to be home, watching them smile at one another. 

Amelia has trach clinic on the 26th of June, where she will be scoped! This is such an important scope. If one of her cords comes back, we can pull the trach! I cannot even begin to tell you how ready I am for it! 

Things to pray for:

She continues to grow on breast milk

Her cords get their act together and start moving, so she can be trach free! 

David and I are tired! Pray we get some energy! Haha

Thanking God for the strength He has given David and I. I never thought I would be able to get through this!

(Daily meds)

Thanks, y'all! Love,

Kelly

Homeward bound

We have been cleared to go home soon! 

Excuse me while I scream happy screams, 

YYYAAAAAAAAAAAAAAAAAY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Amelia is off the monitors at the hospital now, for the first time in her entire little life! They cannot discharge on Fridays, and Monday we are getting every appointment set up for her, and then TUESDAY is the day! I have been nervous about announcing the big day, just in case it fell thru, but decided to take a chance. We had to take a short road trip with Amelia, so that we got an idea of what it felt like, packing up everything and driving somewhere. It was wonderful! Amelia was so amazed by everything she saw. She had never been outside before, so this was A LOT for for! She did really well! We didn't want to bring her back. 

We wanted to have nursing lined up, but it may take a while. There was a little bit of confusion about whether or not insurance would pay for nursing if we went home without it, but that has been cleared up.  My wonderful mother in law applied at the nursing agency that has our case, and there is one other nurse who can pick up a couple days a week, we just have to wait for the state to approve the plan of care. That can take 20 days, and we weren't going to wait 20 days for the state. No sir. 

So here we are, about to go home! It's a good thing we just bought a big house, because girlfriend has a lot of equipment! David has been renovating a room down stairs for Amelia's things and we have a room upstairs for her too! I don't know what we will do with ourselves once she gets her trach out and we don't have all the extra stuff to do! 

Going home is exciting, but it will be a huge adjustment for everyone. For those of you who live in Wisconsin and will want to come visit, you will need to give us some time. We want to share Amelia with everyone, but like I said, it's going to take some time. Also, we still don't want her to catch anything. So don't take it personal if we decline any visitors for a while! 

Prayer requests:

Grace! We will need grace for these next couple of weeks while we adjust to being at home, completely in charge of everything. 

Amelia's health! We just want this to go really well, and one huge thing would be that we need her stay healthy. 

Praise God with us! Amelia has come so far! One of our very favorite np's said "it's hard to believe that this is the same baby who crashed and was on ECMO" the fact that Amelia is alive, is incredible, but that we get to bring her home....makes me speechless. I am so grateful to God for Amelia. 

And just in case they forgot that we want to go home, this is the sign I out on Amelia's door:

Thank you for your continued prayers! We love y'all,

Love,

Kelly

The Glenn and then some

Amelia has conquered the Glenn! 

It's been a while since I have updated. 2 weeks ago, Amelia had her third heart surgery, this is the one we have been waiting for! This one was our ticket home. The Glenn itself is much shorter than her first surgery, the Norwood, but she had a big day ahead. She not only was having heart surgery, but she also had a bronchoscopy, and a cath. The bronch showed nothing exciting. The cool thing about her Glenn is that they did it in the hybrid cath lab. They were able to do the surgery and then do a cath to see if they had opened up the pulmonary artery enough. So, Dr. A finished the surgery and then they did the cath and saw that there was a small portion that needed to opened more. They were able to go back in right away to fix it, instead of doing another cath later on. While in her heart, Dr.A squeezed her shunt to see if it would effect her oxygen sats, and it didn't. Her body created little veins called collaterals. They think that her shunt close slowly enough, that it gave her body time to grow these collaterals. These wonderful little veins got the blood where it needed to go. "Those little things kept her alive"-Dr. A. 

What a miracle! She is so strong. Her body created life saving veins. Wow, so amazed by God. 

The day was long, 12 hours to be exact.  We took Emma to the zoo to pass time. Still a very hard day. Letting a team wheel her out of the room is just the most ridiculous thing in the world. I have never hurt so much. My perfect baby, with an imperfect heart. It's not her fault, yet she has to feel all the pain. The days following were awful. She was in so much pain from the chest tubes. She was just drugged for 5 days, and by the end, the drugs were no longer helping. In that time, she developed chylothorax. (http://en.wikipedia.org/wiki/Chylothorax). She was switched from breast milk to a formula that is known to be just disgusting. She had a hard time adjusting it. Since then, they have adjusted the formula and now she is doing well(knock on wood). 

She is doing so well right now. Her heart is behaving and she is on the fast track to go home!! I never thought I would say those words, "we're going home soon!"

It's true, though. We could be going home within the next couple weeks. We have a couple kinks to work out though. Amelia needs home nursing at night and because we live in a small area, in the middle of no where, it will be hard to find nurses. There is a possibility that they would send us home without nursing set up, but we won't find out until we have a big meeting with all the doctors. That meeting will be Monday, hopefully! 

We have had multiple training classes on the trach and all the equipment coming home with us. Now David and I both need to do  24 hour care sessions, where we take care of Amelia, all on our own, for a full day. 

Ah, I'm tired just thinking about it all! 

Prayer requests: strength! This will be a tough transition! 

Nursing! We need nursing to work out soon, it will be a big burden lifted off our backs. 

Thank you, everyone for your prayers and support. It means the world to us! 

Love y'all, 

Kelly