Matt Turned 31!

Yesterday was Matt's 31st birthday! We normally go fishing on his birthday, but this year we celebrated birth in the hospital. A bit different than the previous years!!! It's crazy to reflect back on the last year alone... A lot has gone on in our family, both good and hard. We watched Eli grow up a TON, lost two of our uncles to cancer, found out we were pregnant, found out Ella would have a severe heart defect requiring 3 surgeries in the first few years of life, celebrated holidays, went to cousins' weddings, played in softball games, worked, and continued to grow in our faith. It was a year that we will never forget. We see how God prepared our family for what we would be going through this year. He has blessed us with jobs that have allowed us to be at the hospital every day, a child that is flexible and can handle all that he sees at the hospital, family and friends to support us, and faith and trust in Him to get us through all of the ups and downs with Ella. It's amazing how God has provided for us spiritually, emotionally and financially through the community around us.

Ella had a bit of a rough day yesterday. She needed to get an IV replaced because the one she had fell out. This is always an ordeal because she has such teeny veins that it's hard for the phlebotomists to get into a vein. It's hard not to just want to pick her up and comfort her while someone is poking her with needles over and over until one works... It often takes over an hour.

We were also told that we need to make more of a scheduled plan for Ella and our goal to get her off the ventilator. So we were back to only 2 hours off the vent twice a day yesterday. They will continue to bump it up an hour a sprint each day as long as her body tolerates it. The doctors found that the recovery from the 30 hour sprint (which was amazing) totally wore her out and almost made it like we had to take steps back. So now we are taking this slowly. It's hard not to question why we didn't start like this 2 weeks ago, but once again, we have the peace that God is sovereign over all and this is His plan. She did 3 hours today and has done well so far. It's so much easier to snuggle her when she's not hooked up to the vent. 😊

Ella's heart rate has also been a little weird. It drops down to the low 90s or high 80s randomly. They did a test for this and everything showed up normal so we have no idea why it has done that a couple times. The plastic surgeon came by last night and said he thinks her head will heal on it's own so that's good!!! It already looked better today. We are praying that it heals quickly because she shows us that it is super painful and cries whenever she's on it... (and so we can go home soon!)

On Wednesday we did another trach change where Matt held the trach and I changed it out. It felt like it took forever because Ella doesn't enjoy it very much so she cries a lot and it makes me so sad. I was so nervous to change it out that I was sweating and I was a little shaky. Thankfully, it wasn't too bad! We will definitely get better at it! I helped clean the trach straps today and once again she hated it, but settled down pretty quickly.

The doctors have asked to have her feeds "chunked". So she is now receiving food every three hours over a 45 minute time frame. This is going to get us closer to feeding her with a bottle. Speech therapy has been in to analyze her suck and it seems to be good. We have little assignments that we are supposed to do before each feeding.

Ella is also getting physical therapy to help loosen her muscles and get her moving like a "normal" newborn. We are supposed to do different movements with her but haven't been really consistent with them, so we will try to improve on that soon! The PT brought in a swing and chair to get her up and in different positions so she's not laying down all of the time. Her sternum precautions have been lifted so we can hold her in different positions too!

Ok. I think that about covers most things!!!

Thanks for all of your prayers for our family! Love to you all!

Love,
Jillian