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