top of page

Interstage

4.13.23


We have officially entered the most critical care period for Gabby called “Interstage”. This is the time period between her first palliative surgery called The Norwood and second of three major surgeries called The Glenn. “Palliative” meaning all of these surgeries will help relieve her symptoms and support her quality of life, but never fully cure her of her CHD. We are so proud and inspired by the strength our sweet girl has shown us thus far. The doctors have assured us Gabby’s HLHS case is on the better end of “best case scenario”. My mama heart needed to hear those words of affirmation. By the grace of God we were able to discharge from the hospital on day 37, April 8th the day before Easter.


We practically skipped out hand in hand, just immensely grateful and overjoyed to take our first 5 minute car ride as a family of five back to our AirBnB. I know I will giggle at this again in the future- Our moms took the big girls out to get the cars ahead of us so we waited in tow with Gabby in her carseat in the lobby. Corey is many things but a patient man is not always one of them haha. I looked at his impatient grimace, “what are our mothers doing?” he remarked and I said, “I bet Linda has to return the wagons” (we used to haul the girls and belongings out.) Sure enough as the minutes seemed to drag, we really couldn’t wait any longer to “break out of jail”, there came Linda be-bopping around the corner two wagons strolling behind her with a big smile on her face we both looked at each other and burst out laughing.


Luckily Gabby didn’t have to be sent home on oxygen. They did supply us with a tank to have on hand just in case. We hope she can continue to progress on her oral feeds and eventually wean her off the g-tube feeds. Though life in the hospital isn’t ideal, it did bring a sense of comfort knowing she was monitored 24/7 with doctors and nurses there in a moment of emergency. We are now in the “home-monitoring” stage, which for two parents with no medical background can seem a little daunting as we now take on the role of Mom/Dad/Nurse. Currently, we are residing at our AirBnB about nine blocks from the hospital. Gabby's medical team encouraged us to stay close by until her next echocardiogram this Tuesday the 18th. We were discharged with a full binder of information to help guide us and care for Gabby in the safest way possible. She has a strict eating regimen that requires her to eat or receive feeds through her Gastronomy-Tube (G-Tube) every three hours if she doesn’t finish them orally. It’s taken us a couple days to get into a good routine, but we have divided and conquered the task of feeding pretty well to make sure we both don’t turn into zombies!


Feeding with a g-tube isn’t hard, but it can be a little time consuming as her bag needs to be cleaned in between each feed, the milk we put into each feed has to be prepped and fortified with formula and the pump needs to be manually turned after each feed. I am breastfeeding her at the start of each feed during the day and trying to use my mother's intuition to ballpark guess about how much she ate. She's supposed to be getting 68 ML per feed 8 times a day. So if she breast feeds for about 10-15 minutes we put about half the amount of the fortified milk into her g-tube feed. Sometimes she eats faster than others and then if we overfeed her she throws it up so that’s been a bit of a challenge. Feeding can be inconsistent as oftentimes she only will feed for 5 minutes or less. Typically after each breastfeeding session I have to pump after we get her feeds started in the tube. Pumping full time has proven to be a hefty commitment, but totally worth it! Kudos to all the mama’s who do this!


Below is a list of our home monitoring requirements:

Home Monitoring Requirements

  • Feed her every 3 hours

    • Balance feeds between breastfeeding, bottle, g -tube (Goal of 544 ML Daily)

    • Use the g-tube as supplementation for what she doesn't intake orally

  • Monitor her oxygen and heart rate saturations 3 times a day minimum.

    • The hospital sent us home with a pulse oximeter and we ordered a portable one to use on the go.

  • Administer Medicine at 9 A.M. and 9 P.M. (Baby Aspirin, Digoxin, Vitamin D).

  • Record her weight once daily

  • Clean G-Tube site once daily and change dressing.


Red Flags to Call Cardiologist

  • Temp over 100.5 F

  • Increase work of breathing

  • Feeding difficulty

  • Persistent Cough

  • Vomiting/Diarrhea

  • Decrease in saturations less than 75%

  • Heart rate less than 80, greater than 180

  • Weight gain less than 5 ounces per week

  • Any weight loss


The most stressful piece of the puzzle after being discharged has been making sure she gains weight. They want her to gain 1 oz a day. Her physiology makes this very difficult as she burns twice the amount of calories as a baby with a typical heart. We’ve had one doctor's appointment since discharge where they thoroughly checked her from head to toe, performed an EKG and checked her growth charts. Her EKG looked good and her Dietician was very excited about her weight gain and growth. I pray we stay on that path as it relieves so many stressors. Gabby’s cardiologist and the head doctor of the Cardiac Unit Dr. Kauffman also gave us the most exciting news… if her echocardiogram is all clear on the 18th of April we will be officially cleared to pack up and bring her HOME-HOME! This was music to our ears. We are so ready to have her sisters get to know her better and just get back to some semblance of normalcy.


Moving forward we will be in this home-monitoring stage until Gabby’s next surgery, The Glenn.

Gabby’s left side of her heart never developed, meaning her blood flow could not circulate through her heart and lungs the usual way. During Gabby’s first procedure they placed a small shunt called a “Sano Shunt” that allows blood to flow from the heart to the lungs. Her next surgery will take place when she is 3-5 months old. We are tentatively planning for either the end of June-Mid July to make our return to Colorado. The next surgery they will remove her shunt, disconnect the superior vena cava from the heart and connect it to the pulmonary artery. The blood from her upper part of the body will flow directly into the pulmonary artery and take her blood to the lungs. We keep being told by doctors, nurses and other heart families that life after The Glenn is where its at!


I am trusting God will too get us through this next chapter. We are taking a risk leaving close proximity to the Children's hospital here, but I fully believe the best medicine for Gabby right now is to be surrounded by those who love her the most. We will have to be extremely cautious of germs, but as another heart mama Ashleah Hall shared with me, “we chose faith over fear!” This road hasn’t been easy, but we knew that going in. We have survived this far by heavily leaning on our faith, leaning on each other and have been overwhelmed by the amount of support from “our village” and Gabby’s prayer warriors. I want to say a special thanks to Corey and I’s moms and my sister for simply being there, providing advice, taking the best care of our big girls, I don’t know how we do this without them. Thank you to my Dad for providing the best system of transportation and always helping to keep the mood light when we need a smile. I have a whole notebook of names of people I wish to hand thank someday too, but for now..THANK YOU. And again thank you for all the continued prayers, Gabriella Hope is our little miracle babe, we will continue to take this one day at a time and as my Grandpa Pat said, “Charge On!”





Comments


Schultz001.jpg

Hi, thanks for stopping by!

Hey thanks for stopping by! My name is Kayleen, I am fairly new to the heart mom community.  We found out at our 20 week anatomy scan that our baby girl has a severe Congenital Heart Disease called HLHS in October of 2022. 

Let the posts
come to you.

Thanks for submitting!

  • Facebook
  • Instagram
  • Twitter
  • Pinterest
bottom of page