Fresh Face

Hi everyone!

Today marks 3 months of having Ella with us! Boy have these last three months been the most insane three months of Matt and my lives. There have been crazy times of serious anguish and times of great joy. Ella has been such a gift to us both and her story has touched so many lives. I can see God working through her in amazing ways already and she's only 3 months old!

We have been back in the hospital for a week now and Ella had a g-tube put in today. This tube goes directly into her tummy so she doesn't have to have the NG in her nose anymore. We knew Ella would need one eventually because the NG tubes are difficult when trying help babies eat orally, so since we were already in the hospital we decided to get it done now.

The surgery went really well! Sometimes kids need to go on the ventilator when under anesthesia but she didn't have to! I was so nervous about this... I asked the anesthesiologist if she would have to go on the vent and she said there was a high probability, but she didn't!!!!!!!! YAY!!! She came back really loopy but awake and it was so sweet getting to see her face. We have seen her face without any tape or tubes twice in her life. Once, when she was born, once when her NG was changed. Her face is too cute to cover up!

We've heard a few different numbers when it comes to days until discharge, but the earliest we've heard was two days and the latest was (well, ideally the latest, but with Ella, who knows 😉) a week from today. Matt and I were calculating and Ella has been home less than one tenth of her life. In three months she has been home a total of eight days. How crazy is that??? We are hoping this next stay is much longer than eight days!

There has been talk of "decanulating" Ella sooner rather than later. This would mean getting her trach out! There are a few differing opinions between the doctors right now. Some say the sooner the better because there's a greater chance of getting sick when the trach is involved, and some say that she has a stable airway, why change that before her next surgery... We can see the positives and negatives in both arguments. Of course, we would love to get the trach out, but we also want to be cautious in doing so. The trach care is constant. It is pretty nuts how your brain and eyes have to be on it at all times. It is the reason that we have home nursing, we wouldn't need it if it weren't for the trach. And all of the equipment we carry around whenever we go anywhere is due to the trach. Please pray for God to give Ella's doctors wisdom and pray that He will give us clarity as to how to best advocate for her.

Ella's development is, as you'd expect, pretty behind. We have continued to work with physical therapy on how to help her learn to hold up her own neck and how to strengthen and stretch her muscles in her body. We have also had speech therapy come in to help us get her ready to eat orally. We are a ways off with this part... It's so funny because the times that speech comes in to see Ella, she is not wanting to suck on her pacifier or on a finger, so they don't see what she can really do. I was finally fed up with explaining that she does suck on my finger and she does suck on her pacifier...;just not when they're there, so I took a video. 😁 The speech pathologists were excited to see the video and that she likes her paci. So hopefully we will have big progress in that area soon! Ella even sucked on her paci for 3 hours tonight!

Once again, we are so thankful for all of our nurses and doctors. They have been so amazing. I can't believe how much time and effort they put into our baby. It is so incredible!!!

Look at how beautiful her face is! We get to see it all!!! YAY!

Right after surgery. A little drugged out, but so pretty and alert! Look at that fresh face!

Love,
Jillian