Hi Cute Little Face!

The bigger gaps between the blog posts usually means things are going well!

Ella got her trach put back in yesterday and is a new girl! The procedure took a little less than ten minutes. The prep and the walk there and back took longer than that! She was so happy yesterday and was  moving her lips around, thankful the tube was now gone from her mouth! The nurses and doctors stopped by her room all day tomorrow to see her face again. It was so sweet. Best thing about the trach... I GOT TO HOLD HER AGAIN!!!! YESSS! It was extremely complicated with the ventilator still hooked up, but great! Three and a half weeks in the making. I was bummed that Ella had to get the trach put back in, but it is what it is and hopefully she won't need it too much longer 😁. Just think, three weeks ago she was on life support and now check her out. She is a living miracle people!

Ella has THREE teeth, yes you read that right, THREE!!!!!!!! They are so so cute and along the bottom of her mouth. I looked and it seems like her little canine teeth are coming through as well as one top, front tooth. I have never seen canine teeth come in before front teeth. We have called her our little vampire since she likes to get blood so often, but now she really will be if these teeth come in before the front ones! HA! I keep telling people that she is ahead of the game in this one area! Forget holding her own head up, she's growing teeth right and left! Four months old with multiple teeth. Crazy. She was chomping on her pacifier and my finger today so I'm just waiting for the other ones to come through.

Her head wound didn't get as bad as it was the first time around, but it's still pretty bad. I'm hoping that by me holding her and getting her off of it, it will go away quicker. I've been helping the nurses with the cleaning and bandaging so that's been nice to take part in her care. The wound care nurse came to inspect it and I reminded her of what we used to do and we both decided we liked that way of doing it better than the new way, so she asked if I could do it since she had another patient to see right after Ella. She told Ella's nurse something like, "Mom knows how to do it all, just ask her." 😊 I loved it.

Her blood pressure and perfusion still seem to be an issue. We can't quite get her off a medication that helps regulate it. Hopefully we will be able to soon.

They have weaned her off the pain medication quite a bit. It's pretty awful watching her go through withdrawals from it. It makes me sad for her. She doesn't seem super irritated by it, just really twitchy and her eyes go cross-eyed. This will hopefully pass soon!

Ella is still on the vent but has been doing a great job with all of her 1 hour sprints off of it. I am hopeful that she will get off fully relatively soon!

We are still in "isolation precautions". So I get to wear the lovely yellow outfit and gloves all day. The infection was caused because of another family on the floor that didn't follow the isolation precaution rules. So that is pretty frustrating, but I am sure to follow the rules to help prevent it from spreading to other families. It reminds me of when people take their sick kid to school or out in public and don't think that it could infect another child. Grr... No idea when these precautions will be lifted, I have been told "indefinitely". The other infection that Ella has in her chest has not needed the wound vac (yet)!!! YAY! I am so so thankful that God has been protecting her!

Ella's bleeding in her tummy has subsided for now so that's good! She is eating and will hopefully get to her goal food intake soon so she can start getting the proper nutrition to heal even better!

My principal and superintendent visited today and it was great to see them. It is really amazing that Matt and I both work for people that care so deeply for us and our family. We are truly blessed.

I have been keeping myself busy with puzzles, TV shows on Amazon Prime or Netflix, and books now a days. I am pretty much confined to her room other than when I get food from the cafeteria and when I leave for the Ronal McDonald House at night. I sit at Ella's bedside a lot and hold her hand or stroke her hair. I definitely miss Matt's company. I always love the weekends because it's when Matt, Eli, Ella, and I get to be together. I can't remember if I have shared this already, and I'm too lazy to go back and look in the blog, but I keep thinking about how sweet Eli is with Ella. Even when her chest was open and a tube was in her mouth, he looked at her after I asked if she looked different to him and he said, "No, she's still cute." During our 18 days at home he was always looking out for her checking to see if she needed a "shuction". Gosh, he is such an amazing boy. I hope he is always that kind and sweet.

Please continue to pray for our family as it is hard to be apart for so much time. Please pray for her blood pressure to even out and for her withdrawals to subside. Please pray for healing in her wounds and miraculous healing of her aortic valve, as that didn't get repaired as well as they were hoping for. Praise God for the example He has given us of His power and His sovereignty through all of this. Praise God for the people He has placed in our lives as a result of Ella's condition. {Praise God for such an amazing support that we have in our family, friends, church, and the prayers we've received. Praise God for He is good.

Love you all,
Jillian

P.S. Little Lupita was also extubated (no more tube in her mouth)! So she's doing better too! Today was her mommy's birthday.

P.P.S. If you are commenting on the blog below or on Facebook/Instagram I am totally reading them and love seeing them even when I don't respond! You all are amazing!