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  • Renee Burns

June 29th, 2020- An unexpected hospital admission...

Updated: Jan 29, 2021

So- we promised we’d update sooner this week! Didn’t think it would be this soon... Vivian and I left the house around 6 am this morning after a nervous goodbye with Dad and El. It’s the first time the girls have been separated since we discharged from the NICU! Also, it’s the first time Zach and I were going to spend a whole day alone with JUST ONE baby (which, big surprise, is waaaay easier than being alone with two babies).

I was like, no worries, I got this, we’ll get to the twin cities just in time for Viv to eat for her swallow study, then we’ll just get back in the car and be home in time for her next feed! Perfecto!

The study took about 15 minutes total once we were situated. I fed Viv from different bottles, with different viscosity liquid while she was undergoing radiation imaging. There were 2 docs, 2 nurses, the speech therapist, and myself. Viv was a champ, she let them sit her up and eat, lay her down and eat, and stop and start he feeding. It took not even 30 seconds with her 1st bottle to see the images of liquid going down into her lungs instead of her stomach. The scary thing for the team was that Viv did not cough, choke, gag, spit-up....anything...she was just happy as could be eating. What our ”normal” bodies know to do automatically when something “goes down the wrong pipe” has not developed in Vivvy-Lou. This, we hear, is not an uncommon side-affect of prematurity, chronic lung illness, long-term intubation, etc. She’s a “silent aspirator”, and had the team in awe about the fact that she’s made it this long without needing serious respiratory intervention.

This is what we learned: She IS able to swallow a thick “honey-like” substance without any going into her lungs, so she will continue to be able to “practice” taking bottles while we let her body heal. Unfortunately, the honey is not nutrient-rich enough, and will also dehydrate her due to its viscosity.

So the team said- you’re not leaving the hospital- and they ended up putting a feeding tube back in her nose, as well and IV in for dehydration- and here we are. It’s been a whirlwind of a day, going from outpatient appointment to Emergency room admission, to the pediatric GI unit. I can’t put into words the experience of helping hold your baby down, yet again, as three nurses try to find a tiny vein and end up needing to place her IV with an ultrasound...then transitioning to her having a feeding tube inserted- oh, and only after her COVID screen. Yup- not what we planned for for our day. This is what I know: Vivian is a warrior- she’s been through more medically in the past 7 months that she’s been alive than most adults I know. And, she’s always got a smile to give when she sees me still there, still holding her hand, still sitting on the bed with her. We were wheeled up to the unit in bed together snuggling- I held her while she slept, and then we were wheeled down to xrays together again- Me focusing on staying calm, helping calm her...a mother/daughter duo going into yet another battle together...

Anyway, the tentative plan from the team is to monitor her in the hospital for (fingers crossed) maybe a day or two with her NG tube, then send her home with it in. We’ll continue with “practice feeds” while giving her nutrients through the NG for the next few weeks then re-do the swallow study and take it from there....TBD.... I just can’t believe I’m updating caring bridge again from this stupid plastic couch in the hospital!!....We knew it wouldn't be an “if”, but but a “when” the girls would need major medical attention again....just not quite ready for it happening this soon. But, here we are, and we are sooooooooooo grateful that we can work with the amazing team, yet again, to find answers!

More later....send some warrior energy our way as we navigate this little bump in the road. ___^_____

With gratitude- A tired mother of one little badass warrior princess



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