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