3 Months of Sunny Days

 



Sunny is THREE MONTHS OLDDDD 

(well, technically tomorrow...but STILL)!!!!!!!!!!!!!!!! She's already made so many friends over here in 2B. She's gone through so much in her life, and yet is still such a delight. She's got several nurses and a few nurse practitioners in the palm of her 6-fingered hand. One nurse stops in regularly to say when she's not tasked to Sunny for the day, another brought her a Care Bear PEZ dispenser because of the sunshine on its belly. As her parents, it's always so incredible seeing Sunny so well loved.

This week they tried a different blood pressure medication. They eased into it and continue to slowly increase the dose while watching her kidney function because of her narrow renal arteries. So far so good, and their goal is to take her off some of the other BP meds she's currently on. 

They're still not sure why the squeeze of her heart isn't as good as it was a month ago. It's not declining rapidly, but it's also not getting better quickly either.  They're hoping the new BP medicine will help some of that, but are still trying to find other possible causes. Her thyroid result came back suggesting she may need some assistance in that area, which could also be affecting her heart. Thyroid issues are fairly common with a trisomy diagnosis, but somehow she's not had those labs done before. Her results weren't horrendous but not within normal range, & because we have no previous numbers to compare to, there's no way to see what she's trending. So, I believe they'll start some meds soon and keep an eye on that.


She's ALMOST at the end of her morphine wean! Sunny's at the lowest dose, so now they've begun spreading the dosage time further and further apart. Hopefullyyyyy, we'll be done this time next week. She has still been feeling those time changes, but I think her withdrawal isn't as bad as it was when they were lowering dosage amount.


We said goodbye to our palliative care team - which is BONKERS. Ever since we received Sunny's diagnosis and prognosis, we were encouraged to work with a hospice team to help us through it all. Our midwives helped set us up with a group before she was born, and once we changed gears to go to the hospital instead, we've had the team here from day one of her life outside of the womb. I remember, very fog-ily, those very early postpartum days. I hated it when the palliative care team came by; they were so somber and VERY okay with silence. It was uncomfortable, but we understood that they needed to come in to their each assignment with immense sensitivity. Their assistance was needed in dire, doleful times, but it was so draining in addition to all the other things and decisions happening on top of postpartum exhaustion. BUT. They came in last week and said they were going to sign off on our case and kindly hoped they wouldn't need to sign back on again:)

Chris & I completed our first trach change together this week🎉 it's a weird thing and something we never thought we'd do, but it feels oddly satisfying having it under our belt. We make a good team, & everyday I'm grateful for my family. 



Specific prayer requests:

- Sunny's heart function & thyroid health to improve

- & for all three of our health in general as we're living in a hospital during cold & flu season. 


Thank you so much for your prayers!!! We so surely feel them & immensely appreciate them/ you!

Love, 

Chris, Alyssa & Sunny


Majo came to babysit while we went back home for a wedding

Sunny had a bath Valentines Day morning and it relaxed her to the extent of sticking-her-tongue-out-while-she-slept.

Valentines Sunny gave out to all her friends here in 2B:)

It felt good to get out of the hospital scenario & get dressed up a little. 

Cousin Snuggles!!



She's been playing with her fingers in her mouth a lot recently 



She's wearing 6mo pj's in this Pic🤯
But also I don't think she's used to seeing Papa's glasses


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