We have found ourselves very busy! Between the medication and feeding schedule (see below), talking with staff members, the different physical and oral stimulation practices to help her develop (since she's a little behind), the tracheotomy care, and the wound care, there are only a few hours that we feel like we can simply be with Ella. It's pretty crazy how much time all of that takes. I find myself a little nervous to go home and have a 3 year old thrown into the mix! But we will have lots of help from family and friends (thank you!) and home nursing. As of right now we have a home nurse 4 days and 5 nights a week. The agency that we are going through has some really great people in their office and have been really supportive. They even think that they may be able to get us nursing 7 nights a week! That would be a huge help. After last night's room in I was a total zombie all day with a headache to top it off. I took a nap around 5:30pm and felt much better afterward. So having the night nurse will be such a relief!
I've learned that Ella likes to be awake and get crazy (setting different alarms off) while I'm on "night shift". Poor Matt has to deal with the alarms going off when he is "allowed" to sleep. I've kind of enjoyed those waking hours though. She is so cute and I just stare at her and kiss her cheeks. It's been a sweet bonding time for us.
We have pretty much accomplished everything we needed to for the room in, but we have one more thing to do... the carseat challenge. Any NICU/PICU baby has to do the carseat challenge here at Sutter. It consists of Ella being buckled in her carseat for 90 minutes. To pass, she cannot get weird heart rates or SATs during those 90 minutes. Today we accomplished... 18... HAHA! We knew this may be tough for her because of the wound on the back of her head, but we are going to just keep trying. We learned what to do for the next time to help her be more comfortable so hopefully we can do it tomorrow! Please pray she passes!
Medical Updates:
Breathing/Trach- Ella is doing well! She just has a humidifier cover (HME) on during the day and wears a mask that delivers mist over the trach at night. They essentially are her "nose". I believe I wrote this already, but the doctors are hopeful that by the time she's 6-8 months old she won't need the trach any more.
Heart- Ella's heart is still going strong and functioning like a "hypo-plast" (that's the cool hospital lingo for hypoplastic left heart😉) does.
Wound- Getting SO much better. The wound nurses have been diligent in checking in on her and teaching us how to care for it. It's about the size of a pencil eraser now.
Clots- No progress (better or worse) that we've been able to see. We keep telling people that we prayed for God to help her not need the pace maker and her body kicked in at the last minute, we prayed for no ventilator and her body later kicked in, and now we pray for these to go away and I have hope that they will do as the other things did! Some of the doctors don't think they'll ever go away, but we know God is BIG and can do whatever He pleases--we're just hoping that He wants them to go away 😀.
Brain Bleed- Got a bit smaller last week, but this week no progress. It just takes time.
We received the equipment that we would be going home with a few days ago and have been using it for the room in. It is SO much louder than the hospital equipment. We've also found a few little things we needed fixed so we are glad we tested it out here instead of just turning it on at home and realizing we needed things fixed. So that's good!
Our official start time was 10:30am on Friday, so we will be done with our "test" mid morning tomorrow. I am glad the hospital has things like this in place because it helps families be more prepared to care for their special needs baby.
Oh! And latest curveball Ella is throwing at us is that there are sternal wires that are trying to make their way out (EEK!) so the surgeons are going to have to open her a bit to cut them down a little.... So that could push our departure date to Tuesday. I am a little nervous about this because of the local anesthetic doesn't work, we will have to put her under again and on a ventilator while she's under. I hope she won't need to go under because I'm afraid she won't be able to get off the ventilator again, but I am praying for peace with that...
We've been saying our goodbyes still and it has been hard! I will really miss everyone!!!
Here are some recent photos!
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| Bath time for Ella! |
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| Flying a kite at the Ronald McDonald House |
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| Rivercats players visited the hospital |
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| The Rivercats were playing the OKC Dodgers so we went to the game. It was a blast. |
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| Holding the bunny that Eli got for her for Christmas last year. |
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| We were practicing how to give CPR to Ella if needed on this doll and Eli loved it. It has a trach like sister! |
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| My organization skills with her feeding times and medications. It's a lot to keep track of! |
Love,
Jillian
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