Happy Sunday evening- and Happy August! When we started our caring bridge page we didn't discuss an "end date". We are still in the process of creating a more permanent website that we hope can be a resource to others at some point...but in the mean time, we're headed into 8+ months of weekly updates!!
We are in awe that it is already August, and even more in awe of the progress our girls have continued to make over the past few weeks. Last week we were lamenting over our "new normal" with Vivian's feeding tube and ER visits...and this week we are excited to share that she is without a feeding tube all together...AND Miss Eloise has officially taken solids from a spoon!
The rollercoaster continues, non-the-less...the short story is that we are on a "trial" period with Viv eating from only a bottle. The long story involves her pulling her tube out again last Sunday and Zach and I making the decision to not go to the ER and wait until her speech therapy appointment to see if we could get a green light to try feeding her without it ...so after her appointment this past week here we are, and she is still without her feeding tube- YAY!...however, her next weigh-in will give us the info we need regarding if she is in fact gaining enough weight to not have to have a tube put back in. Keep your fingers crossed team! - The next tube would be more permanent, going straight into her belly versus her nose...so TBD. For those that care- her goal is 4 ounces of weight gain per week to stay on a growth curve that the doc's are comfortable with....so we're working with 15-20 grams/day needed....If only we could make a big pasta dinner and give our girl a few heady IPA's to wash it down with. I know I've gained AT LEAST 4 ounces in 1 sitting after a few IPA's ;-)
Anyway- here we are, stressed every 3-4 hours to make sure she takes in her goal amount...it's exhausting physically and emotionally in a way I do not have words for. But our girl keeps letting us know she's OK with her endless smiles, giggles, and energy. Photos to come soon- We may be biased, but Viv may be the most photogenic babies ever...she could be actively having a tube placed in her and the girl is all smiles....
Then there's Eloise...Miss El-bell. Our little warrior "graduated" from speech therapy this week after sitting in a high chair for the first time and eating apple sauce..and holding a spoon! She continues to be one of the most expressive babies we have ever met, and her face tasting apple sauce was priceless! (side note: Zach loves pickles- so when the therapist asked us if we had flavor preference for El's first solid Zach asked if there was a pickle-flavored baby food...we can only imagine her face if the first food she tasted was actually pickle-flavored LOL). So now we're shopping for high chairs....next it will be college...they grow up so fast! But seriously, El is wanting to hold a spoon, walk, and have conversations with us currently. It's nuts. She gets frustrated when she's not standing or engaged in some part of her environment. We are bracing ourselves for her to start crawling soon- and then we'll be arguing with her when she brings the car home past curfew..so I'm pretty sure she's my baby :-)
In the mean time, we are focusing on eating, eating, and more eating for them both. This upcoming week we (knock on wood) do NOT have a trip to a doctors office for the first time in months- so we will continue to work to figure out our "new normal" and hope to update our photo gallery on Caring Bridge. Stay tuned!
We appreciate the intention of those who continue to put forth the effort to follow along with our adventures as a Burns part of 4- if it was an option we'd have a big party to celebrate you all!!!! Maybe someday. But in the meantime- please eat/drink something this week that could put a pound (or two) on ya' for our girls!
XOXO-
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