As Ellas journey continues… and another day goes by, our family as a whole is becoming accustom to the reality of living life with lots of uncertainty. Uncertainty is something that is often the most challenging part to process and accept. The doctors like to say that Ella is their mystery girl as GI issues are much more complex than a heart or respiratory issue… So with that, we have had to get comfortable with trial and error to figure this out alongside the many different doctors involved. But with that uncertainty and not knowing if things will change, we have somewhat of a plan to try get her to where we want her to be… we don't know if that plan will work, but that is the name of the game! So grateful to have some sort of plan in place to move forward with that will eventually get us home!!!!
Since being moved back into the ICC (Infant Care Center), we now have the Red Team Hospitalists rounding on Ella. When I asked about a tentative timeline for when we'd be discharged, she said to expect her being discharged next week sometime. With that being said, Ross and I both want Ella to be completely up to par before leaving here, so our chances of having to be readmitted are less… we aren't rushing out of here by no means. We will have to learn how to manage and care for her GJTube before going home, find a new provider who can specifically care for her needs, set up appointments for OT/PT, set up home visits, follow up appointments will need to be scheduled, and so much more.
Ella's Central IV line was taken out a few days ago, whew! 2 less cords to tangle. She is now up to full feed through her JTube(The tube in her Small intestines) and was given the green light to bottle 3 times a day and nurse once a day to see how she tolerates that. Her latch is so much stronger, making her problem of swallowing too much air during feedings much less of an issue, Yay!! Our sweet girl is officially back to her smiley, happy, and oh-so-hungry self. "Sigh". Camilla was given an exception to see Ella for a quick 10 minutes, it was the sweetest thing. As soon as she seen her, I could tell all she would have wanted to do was to be in that crib with her giving hugs and kisses. That was our everyday before, so life has changed so suddenly for her. As I was telling someone before, its hard to know what her little brain must be thinking but she is so much smarter than I realize most of the time.
Having a healthy baby or child, or rather good health in any circumstance or persons is something I certainly took forgranted. We've learned a lot through this so far but the most important lesson I feel l've learned, is that we really do not deserve anything in this life… everything we have been given, is by Gods hand and all of that can be taken so quickly. We watched it happen before our very eyes. Our plan was to have our second beautiful baby and move forward with life as we wished. God's plan was different. It's easy to wonder why? but why has only brought me to dark and lonely places. The only thing that was left for me was trusting God's plan. Trust brought peace. This brings me back to shortly after Ella was born. As we arrived to a local airport to have Ella airlifted to Children's… I was told I could go with. When the flight nurses came into the ambulance, they picked Ella from my arms and told me to give her a kiss. Wait, What? The EMT's had miscommunicated - I wasn't able to fly by air with them. I broke in that moment and my whole world came crashing down. I couldn't bare to think of separating from my just born baby and to be left alone. I resisted their request to take her without me, you can guess that didn't work… they needed as much space as they could get to do what they needed to do for her. I pleaded that they take good care and give her love… To this day that is the deepest hurt I've ever felt, but within that there was this moment where I was given strength to trust. Trust that God would care for her.
I pray that this situation strengthens our ability to work through day to day trials with a grateful heart. The little day to day things I use to complain about will be the things I am grateful for. Life has this funny way of going about things and sometimes we just don't understand… but there is a plan above all and maybe someday it will be clear. For now we will continue trusting, with a grateful heart for all that we have been blessed with.
With all of that being said, everyday brings something new… Some days are better than others. Some days I notice myself loosing sight of my role, but those days I also remember to give myself grace. We are all human, and perfection will never be reality no matter how hard one tries.
Thank you for all of your continued prayers, love and messages too - they give us strength with each new day… And during the moments where loneliness comes or I let the uncertainty get to me, I find myself reading your messages of encouragement and love. May God bless you all!
Happy New Year to everyone!
Hymn # 56:
1. Yet another year has ended / of the time allotted me. / For they gifts of mercy, Father, / I will thank thee joyfully, / for thy love that guides my way, / for they goodness ev'ry day. / Thou has shed on me thy blessing / through this year which now is passing.