One Day at a Time..

3.29.23

Here I thought I was going to have all this free time knowing we were going to have an extended hospital stay…Ha I could not have been more wrong. Gabby keeps us quite busy with the everyday mundane tasks of caring for a newborn. Between changing her diapers, nurses checking her vitals, snuggling her, the monitors constantly going off, untangling her cords, pumping around the clock, preparing her daily bath, squeezing in meals, March Madness, keeping up with our big girls, I have found in the few moments of uninterrupted silence we do have… it is simply nice to just “be”. Hence why I have found it easier to update through facebook, but today with Corey on bottle duty I found some extra downtime and wanted to write a more detailed update!

Every morning I feel like I am living an episode of Grey’s Anatomy as the cardiac team of doctors do “rounds." They huddle around each patient's door and discuss the patient's current prognosis every day. Yesterday (March 28th) during rounds the team decided to let Gabby do a 24 hour trial run of feeding on her own which meant pulling her NG tube out of her nose. It’s been so nice to see her precious little face again tube free, I am certain I could stare at her sweet mug all day long. Though she did show minimal weight gain this morning it wasn’t quite where they would like her. Each day the goal is for her to gain 30 grams. In order to succeed at this she needs to be able to eat 60 ml from a bottle that has added calories eight times a day. Currently, the greatest amount she has been able to drink from a bottle on her own is 43 ml. They are giving her another 24 hours to meet this goal, but inevitably it is appearing more likely she will probably have to get a G-tube placed in her belly to help meet her nutritional needs.

We are so incredibly proud of her for trying her hardest the past couple of days. As her parents we want to push her, but not so much outside her capabilities that it becomes detrimental. My mama heart wants to shield her from having to undergo another surgery to place the G-tube and bear another scar, but they have assured us the risks are minimal and it's probably the safest route for her to get proper nutrition. Weight gain is extremely important to set her up for the best success at her next palliative surgery in a couple of months(The Glenn.) We are hopeful to head back to Montana between now and her next surgery, and understand that her gaining weight is a big factor that will determine whether or not we go home interstage. The entire team of doctors would also feel more comfortable knowing she has easy access and ensured nutrition each day with us being far away. If that brings the doctors more comfort, then in a lot of ways it does us too.

Gabby’s heart works twice as hard as babies with “normal” hearts, which causes her to burn more calories. They are fortifying her feeds a.k.a. my breast milk with extra calories to help her meet her dietary needs. Heart babies do not have the same stamina babies with “normal” hearts have. Waking her up every three hours to eat has proved to be more of a challenge than I imagined, the poor pumpkin sometimes only makes it 5-10 minutes before she ensues a milk drunk coma. We were warned that “feeding” would be one of our hardest mountains to climb, but even knowing that fact; you don’t really understand it until you live it. If giving her a G-Tube is the best pathway to success then we are going to do that. The good news is she will still be able to take a bottle and breastfeed, but will need to be supplemented for the calories she can’t intake herself.

Initially, post surgery one of her main concerns was her tachycardia (high heart-rate.) When they were narrowing down reasons as to why that was occurring her cardiac team decided to test her BNP levels. According to google, “BNP is a blood test that measures levels of protein that is made by your heart and blood vessels. BNP levels are higher than normal when you have heart failure.” Gabby’s BNP levels were higher then they would like to see, but they do not have much data to compare her numbers too because they typically don’t do this test after the Norwood procedure. From the initial test they did two weeks ago her numbers have gone down, but they are still considering putting her back on a diuretic. This will be something they monitor closely. Her echocardiogram came back clear this morning, another relieving sign!

As I stare out Gabby’s hospital room window I can’t help but dream and wish to be on the other side of this and yearn to experience everyday life with her outside these four small walls. It’s hard not to get ahead ask about discharge day, but this morning I was reminded after reading my daily devotional to stop trying to work things out before their time comes and to live one day at a time. We have done our best to follow this practice, but some days my mind races making it difficult to remain grounded. God overcame the world and we can too if we focus on the agenda that each day brings. “There will be a beautiful simplicity about your life: a time for everything, and everything in its time.” My heart needed to hear that today.

I’ve been plagued with a little bit of guilt lately. I think about all the families who have stayed in the hospital a lot longer than we have. I think about the babies and kids whose stories are filled with an unimaginable amount of hardship…more than anyone could dream of having in a lifetime. Corey and I do not take Gabby’s good days and her success thus far for granted. I just pray God knows how thankful we are. We are by no means out of the woods yet, and probably never will be completely as her surgeries are only palliative. But, by the grace of God and science we will take the blessings granted to us and Gabby now and in the meantime will pray for a cure.

Thank you from the bottom of our hearts for keeping our precious Gabriella in your prayers. Each time I have shared a little of her journey publicly it seems the next day God sprinkles her little victories. If you are reading this, I kindly ask that tonight you say a prayer for all the families in the hospital that their babies, kids, teenagers and adults who are fighting to live another day and pray they can recover and feel peace in his healing hands. Life is precious, enjoy his blessing to the fullest, and live one day at a time!!!

-Kayleen