Lucy, We're Home!

Hi everyone,

WE

ARE

HOME!

I’m writing this at 4 in the morning, so forgive me if it doesn’t all make sense! (Didn't post until now because our internet was down from the storm last night)

We left the hospital after lots of hugs and goodbyes around 1pm. We were all packed and ready to head home after 72 days! We have gotten to be pros at this back and forth thing. Matt sat in the back with Ella as I drove and he asked me how I was doing. I started tearing up and responded with “Sad.” Who would’ve ever thought that I would feel sad taking my baby girl home! As the tears fell for a little while, I realized how much I loved everyone at the hospital. It is going to be so weird not to see them every day anymore. I get choked up just writing about it. The nurses/staff kept telling us, “I hope I don’t see you for a very long time because that would mean that Ella is doing well.” I responded with a slightly sarcastic, slightly realistic, “Yah, I’m pulling for at least two weeks. We have to beat our other record of 10 days.” As we walked out of the hospital we received a lot of looks, mostly I think because people love looking at babies, but once they saw all that Ella’s hooked up to, their gazes changed a bit. It’s a weird feeling being a parent of a special needs kid. In the hospital, Ella felt like a “normal” baby because she was to everyone around there. The norm there was having a child with some sort of illness, whether it be a heart baby recovering from surgery, a baby on ECMO, a tube-fed baby, or a trached baby, it was a “normal”. But when we get out into the world, having a baby hooked up to three different tubes at once makes you feel like such an outsider. I used to feel it when she just had her trach, but now I do even more so. Matt mentioned to me how weird it felt. He hasn’t been able to go with me to her outpatient appointments (the few times we did while home) so he hadn’t really experienced the feeling of being SO different from everyone else. It’s tough. It makes me have such a better appreciation for the other parents out there with special needs kiddos. It’s not that everyone looking at her was rude or judgmental by any means, you just saw a look of “Whoa” because it is weird seeing a baby like Ella.

As soon as we got home we were greeted by a ton of medical people… Four nurses from the nursing company and one representative from our medical supply company. It was really overwhelming. We were once again reminded of how fragile and complicated Ella is. Explaining her story takes forever and discussing her meds is tedious. Moving Ella to go anywhere took multiple people because of her new “accessory” (as my mom calls it)… the vent. The ventilator is SUCH A PAIN. It wasn’t as big of a deal in the hospital because we only moved her from her bed to her bedside when I would hold her. But being in our house, we feel almost confined to our couch during the day and to her bed during the night. I’m sure it will get easier over time, but man today was rough. It makes me miss the “inconvenience” of the oxygen tank… Those were the good ol’ days. I used to be so annoyed with the oxygen, but now I realize how good I had it before the ventilator!

Unfortunately we did not have a night nurse overnight, so Matt and I had to take shifts again. I went to bed around 1030 and he stayed up until a little after 2. At 2 I woke up and will be up until Eli goes to preschool and I have given Ella her 9am meds. Then I will have until about 12 or so to get a little shut-eye. At 8am, we will have a daytime nurse as well as another nurse shadowing her before she starts on nights. So they will watch Ella while I sleep for 2 hours or so. It’s always hard letting go of being in control of Ella’s meds or feeding schedule while I sleep, but I know I will need it! Matt and I are going to be zombies come this weekend!

Ella has been doing pretty well overall! A couple of days ago she was needing 4L of oxygen (which is equivalent of 36%-ish oxygen) and was down to .5L this morning! We had to bump her back up to 1.5L once we got home due to her being in a new environment, but we are hoping to wean her off of that so we have one less thing to lug around and worry about. The amount of things we have to carry around with us is pretty ridiculous. I worry about how her development will be impacted because of not being able to move her around as much as we’d like to or to carry her from place to place. The thought of that completely overwhelms me so I try not to think of it too much. Focusing on the present, right?

I don’t think I mentioned this before, but Ella has been throwing up kind of a lot… We aren’t sure if it’s due to the higher volume of food that she’s getting or the trach making her gag, but it’s one of the “red flags” of the HLHS interstage. This is because we don’t want her to become too dehydrated or her heart won’t function properly. So please pray that she won’t be throwing up as much anymore and that we will once again get adjusted to our “new norm”.

Love,

Jillian