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

Gettin' the Glenn on

Amelia had her cath done Monday. They were looking at her pulmonary arteries, to see if they were wide open. The cath showed them wide open, but the ct scan they did showed an obstruction. It's a big deal, so they wanted to figure out if there was an obstruction or not, so they wanted an MRI. 

Poor thing wasn't feeling well at all after her cath. She was in a good amount of pain and was inconsolable. It's hard to see her so "normal" one minute and then so miserable the next.  Yesterday, the plan was to send her for her MRI. It was such a hectic morning. She sweated off her pic line dressing at the same time of needing a trach change. The pic line was very important and needed to be taken care of right away. She was ticked. Right after, David and I did her trach change together, she wanted to test my skills a little and then, because our morning wasn't crazy enough, Amelia wanted to throw a breath holding spell in there. She was a beautiful shade of violet. Luckily, she didn't pass out. This kid. 

The MRI showed a narrowing of then pulmonary artery. Luckily the narrowing is "in the same neck of the woods" as where Dr. A will be working. 

Her cath also showed the shunt, and just how small it is.  She has grown quite a bit and that shunt is quite small, and he wouldn't want her to go another week with that shunt, so this is all great timing. The recovery won't be near as bad as the Norwood. She will have bad head aches for a couple weeks because of everything that will be shifted around. 

Before she goes for the surgery, they will take her for the bronchoscopy. They're looking at her vocal cords. Can everyone just pray for healthy, moving, fully functional vocals? It would so wonderful to have one of her vocal cords working so that we could go home without the trach. 

Prayer requests:

Successful surgery! We hate sending her back into the OR. I am going to be a mess. 

Good vocal cords!!

For me not to lose my mind. 

Praise God for how well she has done!! Amelia gets her strength from Him! 

Love you all, 

Kelly 

Ready hearts

My Amelia is already 3 1/2 months old! I cannot believe it. It has gone by so fast, yet seems like the longest 3 months of my life. She is the happiest baby, and you would never know, looking at her face, that  her heart is failing her. 

Her doctors are so happy with how well she is growing and how happy she is. She has been a rockstar ever since she got the trach put in. Who knew you needed to breathe, to thrive?! She is starting to show signs of her heart needing a fixin'. Nothing too crazy, but with these babies, the slightest change can be a big deal. She started throwing up decent amounts and is looking a little more blue than usual. Her SATS have been dipping and her heart rate is hanging out a little higher these days. Her doctors say this is the best way to go into the Glenn. It's so good that her O2 levels aren't dangerously low, forcing them to operate on her. It's good that she is starting to show signs, so close to surgery. The last thing we wanted was to rush her into the Glenn. 

Her cath was supposed to be last Monday, but the cardiologist who does the caths, went and got himself pneumonia. Poor guy was hospitalized for like 5 days. They have decided to wait until 2 days before surgery to cath her. 

Her surgery is one week from Wednesday. One week. I am absolutely ready to bring my baby home, but not ready to send her back into the OR. I am believing everything will be okay. I also want to pretend it isn't happening. In the OR, they will do a bronchoscopy to check her vocal cords. It the most perfect of worlds, she would come back from the OR without the trach. That most likely will not happen, but it would certainly be wonderful. 

So this next week, we ready our hearts for another surgery. We trust God. 

Ready our hearts, God!!!

Prayer requests:

We need prayers for the upcoming surgery. We knows it's best and will put her in a better spot, but it's so hard to imagine another recovery. 

Vocal cords!! We want one of them to move, move, move, so she can have her trach taken out right away. 

Of course, Amelia. Please pray she doesn't start to feel too sick before her surgery.

Amelia has been at the hospital for 100 days, so the nurses brought cupcakes. Very delicious. 

Thank you all so much for the prayers!! 

Love, 

Kelly

Vocal cords update

Hello! I just thought I would give a quick update on how Amelia is doing.

In the last update, I told y'all the dates planned for Amelia's vocal cord check, her heart cath, and her Glenn(second stage open heart surgery). Life in the hospital bubble is such an up and down roller coaster. At the beginning of last week, they thought maybe she was doing so well, that we could put off surgery until she started to show some signs of failure, but then she started having higher heart rates, she was breathing fast, and was coughing. Everyone started to think that maybe she was getting to that point, already. Honestly, even though it would be a good thing to wait a little longer for the Glenn, I wasn't looking forward to putting it off. It is still never a good feeling to watch your baby show signs of  needing another open heart surgery. Since then, though, her heart rates and breathing have calmed down. She was coughing a little, though, so they decided to take a look into her airway to see if there was anything in there that was bothering her. While doing this, they could check out her vocal cords. 

First they went down her nose and then went down her trach.  They got a good view of her cords and saw that the right one has some movement!!! YAAAAAAAAY!! This is wonderful news! The right cord is the one that was damaged by ECMO going in her neck. It only took 2 months for it to start moving a little. Typically it can take 6-12 months! I don't have to tell y'all how great God is! So aweseom! Unfortunately, though, it doesn't mean that she can get her trach taken out right away. She will have it for her Glenn and then they will look at her cords again, 3 months later. That puts us in July. This isn't the most ideal, but it's doable! As much as I hate the idea of bringing her home with a trach, I have to count my blessings. I have a baby who will get to come home.  Thank you, God! 

When they went into her trach, she was making some noise. So that means she is moving a little air through her cords now! I actually wake up to her at night now because she makes a little noise. I love hearing her voice when ever she can squeek it out! 

So now we wait. I have been trying to keep myself busy. I brought my sewing machine to the hopital and have made some leggings. Of course the nurses all loved the leggings and have been trying to convince me to open an etsy shop! haha I really do love sewing, so it's a nice distraction. I wish I would have thought of it sooner. 

If anyone wants me to make them a baby blanket, burp cloths, paci straps, or baby leggings, let me know. I am bored and would love to sew for you! 

Facetiming with daddy and big sister. (:

The leggings I made for Amelia for when she goes to the cath lab!

My first project!

She is getting very long!

Sweet face!

Prayer requests:

Praise! God has done so much healing in Amelia. I am so amazed at how strong she is. 

Please pray that in the next few weeks, she continues to do well. Her cath on the 17th this month and we would love for everything to look good for the Glenn! 

Vocal cords! Let's pray that they get their act together in the next month so maybe they would consider taking the trach out before we leave the hospital! 

Amelia has a heart friend, named Eli, she just had her Glenn on Wednesday. She did really well and is recovering nicely. Glenn babies have pretty bad headaches for a while after surgery, so could you pray for Eli as she recovers and deals with these nasty headaches! Also, praise God, she was a rockstar for her surgery! 

Thank you, everyone for your continued prayers and support. We love you all!

Love, 

Kelly