Another day, another hospital stay.
Today we had an Endoscopy, Biopsy, and GTube placement surgery planned. It didn't go as we hoped.
The GI Doctor wanted to get what he called "scrapes" of different parts of her esophagus, stomach, small and large intestines, and colon. He was only able to get a "scrape" of her large intestines and the biopsy results of that will return next Wednesday to hopefully give us more clear answers. During this Endoscopy/Biopsy procedure, they have to pump gas into the bowels to create space to get what they need and clearly see the state of what's inside. The gas made her stomach balloon, therefore putting too much pressure on her lungs. Her oxygen and heart rate dropped quickly so they had to come out, but a few minutes later went back in to try suck out the gas they had put in to try go forward with the procedure. The whole team made the decision that it was in Ellas best interest to not proceed with the surgery. She is intubated and will be till morning, as long as everything goes well. Ross had left Menahga early this morning to be here for the procedure and it was such a beautiful time, as Ella gave us lots of extra smiles before going into the surgery room.
Nobody can prepare you for this heartbreaking reality. Seeing your baby sick and not being able to "fix" it as any mother or father would do for their child leaves us feeling helpless. With Ellas multilayered complex issues going on, the Doctors can't give us any definite answers. They actually say we are doing trial & error to figure this out.
The GI Doctor did tell us tonight that our stay here will be weeks, if not longer. Ive come to accept our life may be filled with hospital stays these next few years, as this is often a gastroschisis patients reality. We hope otherwise, and pray God guides and provides wisdom to everyone working to give us answers and move us in a direction to better health for Ella.
Ella is going to need a Gtube long term, and hopefully in the next few weeks, we will try the procedure again.
It isn't easy being away from Camilla and having to rely on others to take care of my other baby full time. I couldn't be more thankful for everyone who has helped us with her too, I can't imagine what her little self must be thinking and the emotions she feels too. It can't be easy being away from Mom for so long, as its not easy for mom to be away from her.
May God bless all of you who continue to remember us and pray for our sweet girl. She is the light of our life and we look forward to the days she will have better health. Also want to thank my husband, Ross for providing for our family and working so hard even during this trial we endure.
I want to share something my dad wrote, he has such a beautiful gift with words:
"Dear Heavenly Father… our daily bread comes by your hand… our breath each moment comes by your blessing hand…our lifeline to eternity comes by your will…not one thing that we can do in this life happens without you allowing it… you open and close doors…you can immediately change our path or desires, shift our focus or strip us bare… only through your son is our nakedness covered and are we then whole…corrupt and sinful is our everyday and every way…so in the face of your power, the only thing you ask of us is to trust you and to humbly submit to your providence in all things… remember baby Ella and care for her according to your will, and give faith and strength for Ross, Megan and their family.. in Jesus name, amen."
Sent from my iPhone