Home Sweet Home

Monday, March 10, 2014

Home from the hospital...Friday (3/7). Just all watching America's Funniest Home Videos together.

Friday we made the slow journey home from the hospital. It was surreal and unnerving at the thought of bringing sweet pea home. We would be solely responsible for her care...her feeding pump, her og tube, her pulse ox machine, her heart monitor, her oxygen tank and most importantly the ambu bag in the likely event it's needed. Not typical newborn care as I recall. But none of this could deter us from the desire to bring our daughter home.

Through hospice we were to have a nurse with us 24 hours a day from Friday to Monday. So, when we arrived home, a nurse was waiting for us. We had already spent so much time training and were almost solely caring for Everly (our choice) in the hospital that at home we planned for it to be no different. So, it was a bit awkward to be home with a nurse essentially just watching us all day and all night. To be fair to them since they were there to do a job and for us needing private family time, we informed the nurses on Saturday that we would be fine alone. We officially could begin our lives as a family of five. We were as ready as we would ever be!

We quickly figured out that moving Everly around and even basic things like diaper changes would require a bit of planning and coordinating. Getting her from one room to the next requires octopus-like skills to hold her and a couple machines simultaneously. The first time we moved from the living room to her room, laughter quickly ensued at the sight. We've since streamlined the procedure and now we look less awkward moving from place to place. She eats via her feed pump every three hours around the clock which requires planning alone since the pump is electric. So going out is planned according to when she needs to eat. I pump every 2-3 hours around the clock as well so that timing also has to be taken into consideration when heading out. Suffice it to say that every outing is a well-planned out event!

First time outside in the sun...she pursed her lips and tightened her eyes and hands initially but just seem to bask in it!

When talking about our desire to bring Everly home, we began to talk about the things we desired for her to experience. So beginning Saturday, we started to check off things we dubbed "The Baby Bucket List." We keep adding things to this list and each member of the family has added items of their own that they'd like Everly to experience. Here's what's on the list thus far: 

* Walk around the neighborhood in the stroller Saturday...check!

* Feel the warmth of the sun Saturday...check!

* Go to the beach and hear the waves Sunday...check!

* Listen to and watch the boys have a nerf war Monday...check!

* From Kendan: Snuggle with her in his bed

* Visit Nana & Papa's house (instead of them coming to ours)

* Hike Lake Rogers (our favorite nearby hike trail)

* From Garren: Watch a movie with her in his bed

* From Daddy: Take her for a bike ride

* From Papa: Take her golfing

We'll continue to add to our list and check off as she experiences . For us, a bucket list has always been something to look forward to and to work towards. So, we are approaching the "Baby Bucket List" with the same zeal and excitement. We are showing this baby a lifetime of love now and if we are so blessed to be able to have more time with her than we can even imagine, she'll just be lucky enough to get a double dose!

At the beach with our sweet baby on 3/9/2014...17 days old. Beautiful day! Her heart rate was the lowest we've ever seen it...in the low 120s!!

Sunday we went to the beach and while crossing the sand, I noticed a mom with a toddler and dad sitting near us. While her child played next to her, this mom had a pile of papers pulled out and appeared to be doing work of some kind. As we left the beach, I saw the same family again at the play equipment but this time mom had a laptop opened at the picnic table consumed. It struck me in both instances that it could very well have been me just 18 days before...trying to multitask and more than likely shortchanging my boys so that I could just get one more thing done. Rarely was I anywhere without "something" to do lest there be 5 minutes of unaccounted for time.

Everly has already taught us to appreciate and not take time for granted in general. Every moment is precious and is a gift from God. None of us know when our last moment will be here on this earth. She has taught me in particular to be present...really present...with my children. I have enjoyed so many great conversations and had such positive interactions with the boys since the diagnosis. We all are looking at our lives through new lenses compliments of our sweet pea! No longer will I shortchange my children to get one more task accomplished at the expense of being fully present with them.

Ala is protective of her "baby"...when the visiting nurse tried to look in on Everly, Ala jumped up and planted herself between the nurse and Everly! As if by instinct, Ala is Everly's personal guard dog.

I encourage you to be present. I encourage you to be in the moment. I encourage you to not take anything for granted.

"Life is not measured by the number of breaths we take but by the moments that take our breath away."

Awake and alert after her first bath and baby massage. She loved getting her hair washed and combed.

Please continue to pray for Everly and for our family for continued good health and strength. Please continue to post your comments on our journal because they are sources of strength for us. Please continue to share her FB page and her website. We'd like for everyone to know that babies with T18 are beautiful, loved and living.

With love and appreciation,


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