Monday, October 21, 2019

Eating is Hard

TUBE FREE FEEDING TRIAL
In early October, Adelyn's feedings began to take a turn for the worse. With nothing to lose, we gained the approval of her medical team and initiated a tube free feeding trial. Our hope was that if we pulled out the NG tube and allowed Adelyn to experience hunger between bottle feedings, she would have more motivation to eat her meals by mouth.


For three days Adelyn drank her breast milk by bottle alone. It was exhausting work for everyone. Adelyn had to eat every two hours around the clock in the attempt to keep up with the minimum liquid intake required for hydration. On the morning of the third day, Adelyn had some of her personal best and largest meals ever! We were so proud of our fighter! Alas, later that afternoon she quit eating almost entirely. She was plain worn out. When she stopped having wet diapers, we knew it was time to replace her NG tube.

Even at her best, Adelyn remained shy of her goals for hydration, and she was far from the volumes that are necessary for healthy nutrition and growth. It was a good experience for our family, as it showed us her strength, as well as revealed her continued need for help eating. We feel better able to accept the next steps in Adelyn's journey, and appreciate her medical team's support as we gave Adelyn some freedom to try things on her own.

G TUBE
As Adelyn approaches her half-birthday (she'll be six months old on October 28th), the deadline for getting off a NG tube has arrived. On November 15th, Adelyn will have a G tube surgically placed in her tummy. If all goes well, she will be hospitalized for three days. (For those of you who heard that her surgery was scheduled for James & Laura's anniversary, the original date was changed because the surgeon will be out of town on November 7th. While we are frustrated that the procedure has been pushed back, we are grateful we do not have to spend our 10-year-wedding anniversary in the hospital.)


(Thanks, Nai Nai and Grandpa for the Duke outfit!)

We are sad that Adelyn needs a G tube. It means another surgery, it means another hospital stay, it means another scar, it means new feeding challenges, and it means Adelyn is on a much longer road to learning to eat by mouth than we want for her. On the positive side, she will no longer have a tube irritating her face and throat. Her acid reflux symptoms may improve with the NG tube removed. It won't be as easy for her to pull the G tube out (as it will be under her clothes), and she will be able to have her hands free!

Adelyn will continue to work on her feeding skills, but the hope that she will take all her calories by breast or bottle has passed. We are now looking toward more long term goals of her learning to eat "by spoon and cup."

GRANDS, BEACH, AND A PUPPY
Owen and Laura took a mother/son weekend away. We enjoyed being together with the Chapman grandparents, Uncle Mark, and the Chlebouns. There were fun surprises like a new boxer puppy, and wonderful adventures like a blustery morning at the beach.


It was a refreshing change of pace and scenery, but we were eager to get back to Daddy and Addie. We missed them terribly while we were gone!


OWEN TAKES A TURN IN THE ER
A week ago Owen suffered a concussion after falling from a swing at the park. (As if we didn't have enough excitement and medical crises in our household, right?) Laura took our poor kiddo to an urgent care after he began vomiting, and he was later transferred to Duke Children's ER via ambulance.

A CT scan showed that there was no critical head trauma, but other symptoms led to a diagnosis of a nasty concussion. He was kept all afternoon and evening for observation and then released home with directions for us to keep close watch over him and limit his activities.


He's doing ok, but we've been cautioned full recovery from the bonk on his head may take anywhere from one week to six months. Whew. Though most of this experience was no fun at all, Owen has been a trooper and even enjoyed parts (like the ambulance ride and praise from doctors and nurses). We know accidents are a normal part of childhood, but man. Sometimes it feels like we can't stay out of the hospital!

Prayer Requests

Please continue to pray for Adelyn Gray and out family:
1. Please pray for Adelyn's surgery on November 15th to place a G tube. Ask that she heals quickly and with a minimal hospital stay. Pray that the gains from the switch to a G tube outweigh the negatives. May she progress in her eating by mouth goals, and may we succeed in keeping feedings positive experiences. Pray against an aversion to the bottle!
2. Please continue to pray that Adelyn's brain will recover and grow normally. Ask that her left vocal cord will also heal.
3. Pray for Adelyn's strength and development. Praise God that Addie is starting to hold her head up for short periods of time in an upright position! Next, please pray she will be able to lift and hold her head steady from a prone position.
4. Pray that Adelyn will continue to qualify for the programs, therapies, equipment, and nursing she needs to thrive at home, and that these services will be covered by insurance! Pray for the excellent nurses and therapists who assist in her care.
5. Please pray that Owen will recovery fully from his concussion soon. Especially ask that his transition back to preschool is uneventful.
6. For God's provision in all the Rosenbergs' needs.




Help!
With Adelyn's surgery on November 15th, Laura's sister has relaunched the MEAL TRAIN for our family. Not needing to worry about dinners during the week of her hospitalization and in the weeks following as we work on new feeding routines will greatly ease some of our daily stress. Thank you!

1 comment:

Rachel Zinzer said...

Hello from Elgin Oregon... just outside of La Grande. I have been praying for your family. My brother will be 48 years old Sunday and he was born with Spina Bifida. He is a special gift and reminder to our family and we treasure that God chose to give him to us. Your "Eating is Hard" title gave me a smile... Everything is hard! I know you know God's Strength is Perfect and His ways are not our ways... so I won't say all the things people always say... just know some people care and some people are praying and trusting God with you. Your family is precious. Merry Christmas. Jude 2 - Mercy, Peace and Love be Multiplied to you and yours especially through 2020. Smiling with you all.