This is the first time I've opened my computer since our last update on the 4th of July...when I shared my desire to return to a Friday update schedule...hahahaha~ funny how life works sometimes. As is obvious, there was no Friday update last week, and here we are on a Tuesday night checking in...
Last Friday was awesome- we spent the day with the Duluth grandparents at their home which is on the beach on lake Superior. Zach and I got some solo time on the beach while the grandparents watched the babies. We were able to eat a meal together sitting down, and we gave the girls a bath in a deep tub that allowed them to fully float for a bit. Then, our little Vivvy-Lou decided that she needed an adventure...back to the Emergency Room.
Since Viv got her tube put in initially, and after her 1st ER visit, we put mittens on her to keep her from playing with the tube (it's taped on her face and goes into her nose). Zach was sitting on the floor with both girls after their bath this past Friday (Viv got a mitten-break), he had his hands on Viv, looked over at Eloise for a second, and when he looked back, Viv's tube was out again! So our fun Friday ended with a four hour ER visit to replace the tube. The damn mittens haven't come off the poor girl since!
Other than the tube-pulling saga, she has been eating like a champ since we were discharged from the hospital. The feeding process is quite cumbersome, with having to have her on a side, having part-mixed "sludge" and part measured out and warmed up breast milk primed and pumped into her tube, then needing to clear the line, add meds, etc. But she's enjoying eating for the 1st time since we brought her home from the NICU, and that is SO rewarding! It is heart-breaking to see her behavior change so drastically and now know how much pain she was in while trying to take a bottle before. Don't get me wrong, having a feeding tube in is NO FUN, but having a happier baby sure is!
This past week Eloise was also assessed for feeding issues by our speech therapist- and we learned that she is highly distractible- not a big surprise for those of you that know Zach and I well. We giggled when the the therapist told us to try feeding her alone in a dark room so she could focus. So- now when it's feeding time one of us sits in the living room plugged into the NG tube pump, and the other one takes Eloise to the basement to sit in silence and hopes she takes a full bottle. Never a dull moment with our little warriors...
Today we were back at the hospital in the twin cities for the follow-up swallow study with Vivian to see how the new feeding plan was going and if she is still aspirating. This time Zach went into radiology to help feed her while they were doing imaging. Vivian quasi-"passed" the study, and we are going to be able to do a trial of her off the thickened "sludge" formula. If she aspirates however, we will need to meet with the ENT team (ears, nose, throat) and take further images of the internal structure of her throat. So- fingers crosses that she will continue to be our little fighter and successfully feed on the thinner formula. We also learned today that the NG tube is probably in for about a month either way because she will need to demonstrate skill perfection before it gets taken out.
So, it's a full-time gig these days for Zach and I, and getting the time to sit on the couch and do this (type) is very rare. One of the reasons I am even able to do this right now is because my parents (the east coast grandparents) are here!
They took 2 days to rent a car and drive out. It's the 1st time they've met little Vivvy-Lou outside of a hospital setting, and the first time they've seen any of us since February!! To say a few tears were shed when they came in and snuggled their granddaughters for the first time is an understatement! And, since they've been here they've jumped right in holding babies and making us food so we can attempt to take care of life-maintenance things. They are here for a week, which already feels too short, but we'll take what we can get, and the girls get to know their Mimi and Gramps a bit :-)
It's a funny thing this whole discharging from a 4-month stint in a hospital setting as new parents to the world of COVID- being quarantined, then social distancing, then losing work, then not being able to travel to see family or spend time socializing with friends...it really adds a little layer of challenge to our already unique situation.
Having my parents here for even a week is heart-filling in ways I can not describe, and also helps our situation feel a little less challenging. Growing up my mom had a quote hanging in our kitchen next to her computer- "A true friend is one who walks in when others walk out"- We've been reflecting on this a lot lately, specifically regarding who's "walked in" and who's "walked out" during our journey as new parents in a COVID world. We are beyond fortunate that both sets of our parents (the girls grandparents) have walked in to support us in ways we never knew we needed.
But here's the thing for me- it's part of my profession to BE THERE for people who are dealing with difficult stuff. To be the person that "walks in" and helps folks when others are "walking out". For me, it's a no-brainer, but I am learning that is not the case for the general public. I would even offer that the large majority of humans are not equipped with the tools to walk-in for people when they are dealing with adversity- and man is this COVID thing providing people with some serious adversity. Non-the-less, we continue to be surprised, grateful, humbled, and appreciative of those who have continued to walk in for us as we navigate the ups and downs with our warriors. Whether it's been through weekly calls and texts, a socially-distanced beer on our front steps, to funny videos, memes, and meals, having people walking in and showing up for us consistently throughout our process, even as they are going through their own challenges, has been amazing!
Anyway, we wanted to take some time to send love out there in the universe to all of you who just keep walking in (especially our Tioga street family) over the last few weeks when we've been hit with multiple surprise hospital visits/stays. It is beyond heart-filling.
There is no "right" way to do it- but figured we'd remind folks as we ALL navigate our own challenges and adversities- especially this new world of COVID - it is SO appreciated when you are a person that walks in instead of walks out.
So there you have it....a Tuesday update! We hope to have no more hospital visits between now and Friday, when I hope to be able to sit down again.
Until then, Cheers to you all!
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