The flight was pretty good! There was no bathroom on the plane, and that was the worst of it! Annelise did soooo amazingly well on her first plane ride! She slept pretty much the whole time, waking up to stretch, then she'd go back to sleep! She didn't even demand a new diaper! Which is very highly unusual for your friend Annelise, let me tell you 😊.
Flying into the airport and the ambulance drive to the hospital was really heavy but happy for me with all the feelings. To be here at this point finally... to be on the streets that I know, to be bringing my baby home the healthiest she has ever been, it is happening! To have the visual of places where I've been pregnant and wondering if that time was all I was going to get with her, but now being on the other side and having 14 weeks and counting worth of experiences with her amazingness, it's all pretty incredible to think about!
We got to the hospital, and found our room in the PICU. Now even in Omaha, the PICU is very different from the NICU. It's less of a homey feel, and more hospital-like. So that's an adjustment to make that we're prepared for.
We had her on her ventilator while in flight, even though she has been doing trach collar during the day for 12 hours and vent at night for the past few days in Omaha... just to give her some extra breathing support while in flight. They gave her some extra oxygen on the plane, but just up to 25percent. She has been on what they call "room air" 21% for a long time while on the vent. When we got to the hospital, our amazing transport nurse from Omaha told me she had been able to turn the oxygen back down to 21% on the ride to the hospital. The team at Miller Children's was setting her up to go on a trach collar here, but they were starting to set up a cool air collar. We had tried that first in Omaha, but it cooled Annelise's whole body temp, and so that's when we switched to the heated trach collar.
The RT's here haven't done a heated trach collar, and went to their educator who passed on the message that "we don't do heated trach collar's".... So that's the message we got... but it had been weeks since our last attempt at the cool air trach collar, and Annelise has grown, so we agreed to trial it and keep a watch on her temp.
Annelise had been awake and looking around for awhile at her new surroundings, Kevin and I were trying our best to bundle her up and shield her face from the freezing cold air that comes from the not heated trach collar. As I was holding her up in bed, Kevin noticed her heart rate was dipping under 100, when it's usually 130-150's... She quickly stopped being her lovely self. And lost some color in her face, and closed her eyes. We called in her nurse, who allowed us to take the trach collar off of her and called to get her set up on her ventilator again. Her temp was two degrees below normal!
She really hasn't been the same baby since, and that is where my attitude is coming from. She was doing so well back in Omaha, who agreed to heat her air for her. I feel like we'll be trapped in this hospital and on the ventilator because they aren't familiar with something I saw working well in a different environment earlier that same day! I want to go back to that environment!
We had rounds later that day, and the attending doctor did agree we should try and "MacGyver" something that works for Annelise as far as her breathing needs go. I don't know exactly what that will look like, but I'm happy that there's more of a conversation now, and not just "we don't do heated trach collar."
So we put Annelise on a warming blanket and her temp is back to normal... but her heart rate is super crazy and goes from the low 100's up to 120's and sometimes 130's... And she's had two normal blood pressures, all the others are low, which is not normal for her. Her "secretions" /snot is also yellowish, when yesterday morning it was white. They are testing her thyroid and wondering what else could be causing the issues... but I feel that it is obviously the hurricane of icy wind that I allowed them to blow on her face. Never again!
I crashed not too long after that and slept some. When I woke up, the RT was checking her vent settings, when I thought to ask how much oxygen she was on, and foundbout 30%! That's a crazy high number for her to be left on without needing it. I have no idea why she's on 30. She was put on the vent at the end of a shift, so perhaps she needed it then, but nobody knew she could do with less support so they didn't try to wean her down? Regardless, we started to wean her now... so I'm hopeful she can get back down to where she was 12 hours ago!
I miss my Omaha people, I'm really actually mourning the loss of not getting to see them anymore. We had some of the most amazing nurses and RT's, and we joked about how property is so expensive in California, that we can't afford to get a bigger house to fit us all, but we could build a nurse tree house in the backyard where they can just come and live with Annelise for always! I miss them. For Annelise and also for myself!
We got here too late for them to get her formula ready... So she hasn't eaten since yesterday before we left.
It is not all bad. We had a beautiful welcome by the palliative care team here, who gifted us with a pink quilt that has Bible verses embroidered on it! They are working so hard to help us feel welcomed and part of a team.
We had some very understanding nurses, who seem very willing to listen to us about Annelise, and don't make me feel like a creep for bawling all over the place. They just don't know her yet. And now they know me at my tired and overwhelmed, which is not the first impression I'd choose, but this is life.
This feeling is familiar, I felt it in Omaha too... it comes directly from anxiety that tells me that this current state is how life is going to be for always in the future. I know from 99 days in the NICU though, that it's not true. We'll have more conversations, we'll teach them about Annelise, they'll run more tests, and spend time with her and get to know her too. This is why Omaha kicked us out and told us to go home! Doing this hard work now, will help the doctors and nurses know her, so when she comes back in the future for illnesses she might have, they will already have an understanding of all things Annelise.
It will get better, I know it. But I can't make a sunshine and rainbow post because I'm not there. I'm sad about leaving my comfort zone. And I haven't built trust with these people yet. Doesn't mean it's not coming though! It just takes a lot of emotional energy! And the reality is, some people are better at their jobs and have more intuition than others. So we as her parents do need to pay attention to her care and not just leave it up to the docs without question.
This has been a big step to take, and it does get us closer to home. I'm excited to see friends and have them meet Annelise when we get more settled.
While we were taking off, I was so happy to think about how far Annelise has come, how far Kevin and I have come too, and the new people we are after having been through a whole bunch of new and intense experiences through our journey in Omaha. I still feel that way, and I feel God asking me to trust Him, because He's the same God... I don't talk to a new "California God" the way we have a "California hospital"..... God is the same and has been the same, and I can be confident of His love, and His power. It's a new day! That means new mercies!
This old song popped into my head as we were leaving Omaha, and even in my crabby state, I can sing of God's love forever, because He doesn't say all things will be easy. He says when the easy or hard seasons are here, He'll never leave. I've experienced that, and there is so much beauty in the scars.
https://youtu.be/MyZ-DKoU5cg
I made name tags for a lot of our nurses and RT's! I wish I had started sooner to have them all! This is not the full list of amazing people who cared for Annelise in the early days.
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