Autumn Leaves & Feeding Tube Weaves

 

   At one point, I had said to one of the team members that I felt like our window of going home before surgery must be closing. She asked if we had been given a date for surgery, and I said nothing except for the "8-12 months" guesstimation when Sunny was a little baby. And that's right where we are, so if the window is closing, should we just switch gears and face that reality instead of continuing to try to go home. As Sunny wasn't showing any real signs of needing the surgery presently, nobody really knew what to tell us.

They decided to get some updated information and discuss it with the surgeon. 

So Monday morning, she was taken to get a CT scan and then our favorite heart catheterization doctor took Sunny back to measure various parameters to assess heart & lung function.

During that procedure, they were able to see some contrast in her stomach that was leftover from last week. Thursday, Sunny was given some contrast via her G-Tube and then was periodically x-rayed throughout the day so they could watch her digestion. They followed the contrast down, and reported normal things - no obstructions or narrowing, and the contrast had made its way into her large intestines within two hours. 

So while a tad surprising, it was an informative & inadvertent find. It gave us a clue as to why she could be having good diapers and tolerating feeds sometimes, and then suddenly an upset tummy and angry digestive bloodwork numbers. 

    The pressures they had measured in the heart catheterization were good, I think they were pleasantly surprised that the numbers had improved since her last catheterization. Since those numbers were good and her blood oxygen saturation is still good, we were told she's doing well and we'll continue to pursue going home before trying surgery!

    While that was a wonderful confirmation for us, we're still struggling with figuring out what her stomach wants.  Tuesday afternoon, Sunny was taken for a minor procedure to replace her G-tube with a GJ-tube. It's a simple procedure and it acts similarly to the G-tube, but it has two lines of access - he G part still has access to her stomach, while the J goes just into her small intestines. Since some of that contrast was still lingering in her stomach five days later, the team thought it best to just skip over that leg of digestion for whatever we were able to. All of her feeds and most of her meds are now going through the J-tube portion, and then we have one med that is best sent to the stomach as well as being able to still vent her belly & let out air or excess bile. She's still been a tad gaggy, usually in the mornings after her AM meds, but she's been seeming more herself. I'm hoping this will work well & will allow us to go home without needing IV nutrition. 

    Sunny is still growing and for the most part, content. She's 28.3 inches long & 17.8lbs, which average for a typical kiddo her age(she's a little longer than most), but even average is mind blowing to me. This little lady is just amazing; She's so vulnerable, and so strong. She's still so loved by so many - both staff here at the hospital and beyond:) I truly LOVE seeing people love Sunny so well, & it's really so fascinating to me. I think a lot of the *appeal* of babies to adults is trying to make them smile. Somehow, the smile from a baby is a stamp of approval and amusement and it just feels good and looks cute. Sunny has a verrrrry tight smile budget. They're mostly in her sleep, with a FEW whilst awake. Cleaning people, nurses, nurse practitioners, respiratory therapists, relatives, friends, people we've never met etc - SO MANY PEOPLE just love this girl. It blows my mind, and humbly fills my heart.

Prayer requests: 

- For Sunny's digestion to get it together:) & for her body to do well with the GJ-tube feeds,
- For her heart & heart function to continue to grow strong and healthy. 
- For Sunny's parents to grow where we're planted.

Thank you for taking the time to check in on Sunny, and continuing to pray for us.Sunny's a miracle, and all the people who've prayed for her are part of that miracle. 

Love,
Chris, Alyssa & Sunny

Monday morning, ready and in her procedure gown

Got to see Aunt Mikala & MEET Uncle Jonathan

She's been enjoying her right side lately & it's wonderful! She's not been wearing her helmet with all her pukey days, so maybe this is doing.....something:)

She just looked huge to me.

The after Tiny-Tots slumber

Her hair is the result of her sleepy fidgeting:)

Majo & Aunt Jadyn are close to completing their required trach changes!!

Lots of naps this week, she's been a busy lady.

Don't look if you don't wanna see G vs GJ-tube....

That's her little G-tube button with an extension.

GJ situation, the G tube extension going to the left, and J extension is off to the right.