It's Good 2B Here

January 31, 2025

Monday morning, we were ok'd to make the move over to 2B - the non-intensive cardiac unit! She did very well on the home ventilator, & she was making progress on increasing feeds to the goal amount.

Saturday they took out her picc line out & Monday before the move they took out her arterial line - IV FREE for the first time in her whole life!!!! So, she's only attached to the ventilator, and also the feeding tube while getting milk. This makes her able to wear some clothes!!! They still need to be able to access her body if need be, so kimonos and button- downs have been our friends 🧡

When the nurse said we could start bringing in her clothes, I told her I didn't think the 0-3 month outfit I had waiting for her would fit her anymore. She laughed and said, "Yeahhhhh maybe just go to 3-6 month sizes"

Sunny's got a lot of issues, but growing has not been one of them! THAT alone has been an immense blessing. We've continuously heard how babies with heart issues usually struggle to gain weight, which inevitably delays things such as home ventilators and/or heart surgery. We're veryyyy grateful that she's a chunky lady.

We'll stay here until her G-tube(for feedings at home) is placed, and we've finished our education on all things Trach care related. Then in the beginning of April, if she's still stable, we should be able to go home for about a month until returning for her corrective heart surgery.

In 2b, Sunny has her own room with a bathroom, 2 beds, a table, closets and a minifridge! It's so nice to have more space and less limitations on visitors!!

Sunny's been doing well on 2B thus far. It's weird to leave all the doctors, nurses & Therapists we're familiar with, but it's for a good cause:)

They're continuing to wean sedation, and it's great to see more of her awake self daily! Occasionally, she struggles a bit with digestive issues - sometimes she's fine but then other times she gets all stopped up. But other than that, lately she's been a pretty low drama patient!

Continued.....

The next day, we returned to the Cardiologists office to video call with the team of doctors at the children's hospital. SEVEN people were on the other end of that call - all from different departments. We went over health history, and they told us they'd take us on & do anything they could to support us.

It felt like such a huge last-minute change. We'd thought out & prepared for a multitude of scenarios & outcomes, but this was not one of them. It was scary to commit to because it was so different, and going in for an induction that next week felt so soon. But our cardiologist - who was referred to us by our trusted midwife & the MFM team - recommended this path. She said bottom- line, "....if Sunny was not viable, you could go anywhere to deliver, right? But if Sunny IS viable, this place would give her the best opportunity..."

And with that, we agreed to go in the middle of next week for an induction. She was full term, and in the very best of care. Every team we'd been working with up to this point exceeded our expectations & felt guided into our lives & this journey. Even though we didn't use the midwives or hospice team like we'd planned to, they still text for updates & ask for pictures of this crazy girl. Before we left for the induction, the hospice physician stopped by to drop off a cheery, pink knitted blanket. She said their team felt it should go to Sunny🤍. & during labor, my midwife was texting me with suggestions & asking updates. After Sunny was born, one of my nurses told me that the Maternal Fetal Medicine office had called to check on Sunny & I both.

They were all an incredible blessing while we were working with them through that tumultuous season, & they continue to love and support us from afar.

Prayer requests:

- For Chris & Alyssa as we continue to learn how to care for Sunny.

- For Sunny's digestion to improve, and for her to remain stable.

Chris & I are often blown away by the love the three of us are receiving. It's humbling & it doesn't make sense - we truly do NOT understand it, but we do notttt take it for granted.

Thank you.