A Thrill of Hope

 

Hi friends! 

Over the weekend, they extended her CPAP trial from 60mins, to 90 mins, to 120mins. So far, she's been doing very well during those!

Other than that, she's just been resting & snuggling:)

She's still having some irritability, understandably so.  While the breathing tube, blood tests, cold stethoscopes, oral care, physical therapy, repositioning etc etc are all for her own good, I'm sure it's all prettyyyyyy annoying😬. I personally think she's been easier to settle, but it still worries me when they have to occasionally give her extra medicine to calm her down.  

BUT. Because her CPAP trials have been going so smoothly, that doctors are planning to attempt one more extubation TODAY! If it fails again, they won't try another and will just plan for a tracheostomy next & then begin plans for her corrective heart surgery as well. 

We're hopeful and nervous.  We know her care will never be simple, but life without a tracheostomy/ventilator would be simpler.  

Although a challenge at times,  we're trying to keep trusting God’s plan in whatever happens & just continuing to love our little Sunny babe. 

Continued....

Her growth eventually remained at a good level - usually within the 30-40th percentile. At our biweekly appointments, the doctors kept an eye on things to make sure nothing else popped up in Sunny or I's health.  Her heartbeat was good, despite her wonky heart.  My blood pressure started to rise a bit, but never to anything that causes the doctors alarm. They had given me some warning signs of preeclampsia as I was at higher risk because of her chromosonal abnormalities, so we kept a close eye on those.  

Despite the positive growth scans, the doctors encouraged us to familiarize ourselves with a palliative care group. Our midwives assisted us in finding a good palliative care team who met with us at 30 weeks. A physician and a social worker from the team came to our house to meet & get to know us,  as well as answer any questions we might have about what they could offer.  They asked about how we met, our marriage, pregnancy journey, & more questions about our baby girl.  I remember saying how, with her diagnoses, we were just grateful for every day that she was still with us & were trying to be intentional about cherishing time with her.  They asked about the ways we were doing that; playing certain songs for her, reading to her, sitting my belly out in the morning sun so she could maybe feel some of the suns warmth,  and lastly being mindful of what foods I ate. I had heard babies in utero can taste the food we eat, so I wanted to make that fun for her. Sunny, being the cultured girly that she is, has had alligator, elk, rabbit, as well as several of her Papa's tasty cheeseburgers.

(Oh & lots of this stuff🤌🏻)

After that initial visit, they continued to follow us closely and even accompanied us to midwife appointments as we slowly continued to nail down a series of contingency plans surrounding Sunny's birth.....

Prayer requests:

- For the extubation to happen successfully, & that they won't need to reintubate so she can live her life tracheostomy/ventilator free. 

- That Sunny would be more consolable & wouldn't need additional sedation to calm down.

- For Chris & Alyssa's hearts to continue to trust God and his plan no matter what happens.  

Thank you!! We cannottttttt thank you enough. It's an army of people walking through this with us, and we can feel it.  

Snuggles with Great Grandma Kathy

They gave her socks for the 

first time on her 1 month birthday!

We love rest.