The plan I mentioned in the last update, has been working so well for our Sweet Ella girl. She is currently taking 78mls by mouth every 3 hours, so other than supplements she needs, her GJTube is not being used. WOW! She is gaining close to an ounce in a half every day and is happy as ever. Her tummy is finally satisfied and oh is she loving it. Yesterday, Ross and I went to Red Wing, MN to purchase a mini-van so travel will be easier… when we came back, the nurse was chuckling and tells us, "Ella is definitely a 4 month old, whenever we leave her bedside she immediately starts fussing and as soon as she sees my face, she gives the biggest grin". That might seem like something small, but being neurological damage was in question being she wasn't receiving proper nutrients to her brain, that was music to our ears. Our girl is truly a fighter, and she continues to amaze us with each step toward home.
We have been busy preparing for discharge these last few days and I have been receiving training for the GJTube, as she will have it for some time yet… We are also making appointments and mentally preparing for the new normal to come.
Being Up North does not have the specific care that Ella would need, we are relocating down to this area for the next few months, we will be close to my sister Kelsey during the weeks for appointments and then home for the weekends with Ross. It will be incredible to finally be able to mother my other child again, but I am sure it will come with its challenges too. It won't be easy being away from Ross during the weeks yet, but Ella needs specific care and the best option is to stay down here for her to succeed. There are lots of pros and cons to come and with that we are going to make the best of all of it.
We are excited for the future even with the lying challenges ahead. We have to look at this new normal to come as an opportunity to meet new friends, visit other congregations, to spend more time with Kelsey, and all the positive things.
The care Ella will be receiving consists of: Weekly doctor appointments(Weight checks and consistent care to catch if something changes), Physical and occupational therapy(To help her catch-up strength wise), speech and dietary(To make sure she is getting enough to grow), home care(GJTube care and weight checks), and GI appointments to follow her gut.
Our tentative discharge date is tomorrow… It has come up so fast it seems. As I reflect on our time here, I can't help but realize just how blessed we truly are. Since being here, we have had every emotion come to life. Just 3 in a half weeks ago, I had to look the doctor in the eyes with tears and ask, "Is my baby dying"? and as I write today, there is no doubt in my mind that God has had his protecting hand over her and continues to heal our sweet girl. We may still have a long journey ahead, we don't know… but for now, in our place of watching, we will continue to put our trust in God and pray for strength to continue journeying as his own.
We appreciate all of your continued prayers and thank you for reaching out and following Ellas journey too. This has been humbling in so many ways, we have learned more than we could have ever imagined. May God uplift those of you experiencing times of hardship and give you strength to journey on. Please reach out to us in any way if there is anything we can do to help those of you going through the similar struggles we have experienced. We are all here to support one another, and what a blessing that is.
Hymn # 285, vs 1:
Love for my Savior fills my heart / through faith when I can see, / for naught can fill my longing heart / than by his side to be. / His blessed hands and wounds I see; / His heart is open just for me, / where I can hide myself and be / content eternally.