Home Again!

Hi everyone!

Ella is officially 100 days old!

We busted out of the hospital on Thursday in a tizzy because we had to get to the ENT to talk about the possibility of getting Ella's trach out. Unfortunately he said he would like to wait until our normal cardiologist gets back and assesses her. So we rushed for nothing, but hey! It got us out of the hospital quickly! It was amazing how fast the morning went because we had a lot to get done and a lot to pack back out. Ella is still on extra oxygen 🙁 so we had to bring all of her home equipment-the oxygen concentrator and t mist machine- to the hospital to try to figure out how to get such a low amount of extra oxygen to her. I could tell the respiratory therapists and equipment suppliers worked hard at getting it all to me and figured out. I am so thankful I didn't have to do that! I learned all of the new things that came with the oxygen and took notes for Matt. This stuff is complicated! I'm thankful God has allowed me to understand all of the medical jargon and procedures to be able to take care of Ella. I am still hopeful that we can wean her off, but there's also a sense of security knowing that her sat levels will rarely drop too low.

The first night back was rough. Matt and I were both up a lot the night before with Eli or Ella and were already exhausted. I was so overwhelmed by the new care that Ella required and the attention that Eli wanted that at one point I had to get up and leave the room to go cry in the bathroom. Usually Matt and I take turns at being overwhelmed, but that night both of us were and it was stressful.

Thankfully the next day was much easier and we all started to settle back into a routine. The mornings around the Waechter house are pretty nuts with all of the care that Ella needs and the different things we have to do to keep up with our "heart homework binder". Not gonna lie, it's a lot. But thankfully Eli loves morning cartoons and the nurse is here when Matt's at work to watch Ella while I get Ella weighed and get meds measured out. 😊

Ella sleeps a lot still even though she's 3 months old. I am not sure if it's because her heart is working overtime or if she is still exhausted from being woken up all of the time at the hospital.

Saturday was a great day. I even got 2 hours where everyone else was sleeping so I could take care of things that I am not able to when the kids are awake. It was so nice to be at home just the four of us. We also received our new double stroller that we ordered so that we could trek around Ella's gear. We've been going for short walks around our house and Eli and Ella both love it. It's funny how much we have to bring with us on these walks. You'd think we were going somewhere for the day! Once Ella doesn't have a trach anymore it will be so much easier to go places and to live a closer to "normal" life.

We've continued to receive meals from people and it has been such a blessing. It's amazing how not having to even think about dinner, but knowing we will all be fed, relieves so much stress.

We have 3 appointments this week. 2 on Monday in Sacramento (one just to monitor her and how's she's doing overall and one to check back on her wound that's still barely on her head) and then her cardiologist appointment on Wednesday in Roseville (so glad I asked if they have a Roseville office! It'll cut out about an hour of driving!).

I'll keep you updated and continue to ask for prayer for guidance for her doctors and energy for us!

Love,
Jillian