Touching Base

Probably one of my favorite pictures! I love her chubby cheeks here and just how cute she is. This was taken in the stroller with the sun warming her face. Oh, how she loves the outdoors this girl!!

Okay, so my plan was and has been to update almost daily or close to that.  However, I am living in reality and realize that it is just not possible to do so.  So, I hope everyone understands that I will update as often and as detailed as I can.  Garren, my almost 15 year old, says that if I didn't type so much that I could do them quicker.  Hmmm...I need to confer with his writing teacher.  All this to say...I will update as often as I am able so bear with me.

So, the truth of the matter is that caring for a medically fragile baby requires a bit more planning and a bit more time.  Please don't read that the wrong way...we love every minute and pray in earnest that we get to continue it.  However, moving a tiny baby around with two sensitive beeping machines and an oxygen tank is no small task to say the least.  While we have gotten better at it, the fact remains that it does take triple the amount of time to do tasks with the additional apparatuses.  Bath, changing time, feeding and all other baby-related tasks tend to add up throughout the day.  Plus, it's important that we take sweet pea for a walk everyday so that gets factored into our daily activity as well.

 Love. This. Girl.

Oh, lest we forget that we homeschool as well and that now adds to the day.  I love what I get to do with the boys and am so grateful.  So, to give them as much as I can right now, other things are taking a back seat (like checking and responding to emails, etc)...honestly, if there were another term to describe something further than "backseat" that would be the word I would choose here!  It's important for all of us that we try to reach a bit of normalcy again including our day to day school routine.  I must say that it is easier said than done right now which for an intense scheduler like myself is a hard pill to swallow.

The most time is spent with doctor's appointments right now.  Currently we see a cardiologist and her pediatrician for routine newborn care.  Next week we will be adding in our ENT doctor and the GI for her as well in addition to her pediatrician's visit.  The ENT visit is to have our beloved doctor evaluate Everly's throat and jaw.  The GI doctor is going to help us monitor the amount of feedings she gets and the weekly increases.  Cardiac babies tend to burn calories doing just about anything much more than non-cardiac babies.  So, the goal is to chunk her up a lot more.  Just as was the case in utero, she gains slowly.  Then the pediatrician visit this week is to see how she's grown since last week's feed increase since we didn't have our first GI appointment yet.  We'll switch that care to them after next week.  Eventually we hope to add in home or in office physical therapy and possibly speech therapy for feeding issues (maybe trying a bottle) but that seems more of a pipedream at this point.  Right now, we are doing at home physical therapies with Everly like range of motion exercises for her arms, legs, fingers and feet.  She seems to enjoy them as we work with her so that's fun.

Perfect onesie that our friend Heather gave us...Sweet Pea!

All this to say, that my updates and even having visitors over has been so limited due to the time constraints of our day to day living now (and fear of exposure to germs).  We try to devote time solely to each boy nightly so that they aren't left by the wayside.  We stretch every minute we have and find some that we used to waste but do no longer.  It's amazing how a life change can alter so much!

The first week home we spent just "doing" stuff with her...all her baby bucket list things.  No work, no school just fun!  The second week was the week she was sick with pneumonia.  We've just past our third week home and we are trying to diligently get into our new school routine and home life.  Please bear with us as we try to figure it all out.  Next week will begin our fourth week at home and we hope tasks become even that much more second nature.

I just wanted to take a moment to acknowledge all the help with meals our family has received.  Thank you all so much for helping take care of that one task that while not so difficult really is when compounded with everything else.  It means so much to us that you would take the time to prepare meals for us and send us frozen meals for later.  Also, thank you for the meal gift cards that will continue to help bless our family at a time when we need it most.  It is all so appreciated!

Kendan doing Everly's "school" eye tracking exercises.

I also wanted to share with you another family who will be starting (really they have already) their walk with a sweet baby who will be born with Trisomy 18 any day now.  Anissa and Mark Scholes are already the parents of three boys and are expecting a precious baby girl, Elisabeth Maxine, at any moment.  They received the diagnosis of T18 in September.  Please lift this family up in prayer as they prepare for delivery.  Their prayer is that they will get to meet their sweet baby and hold her.  Here is their CaringBridge site if you would like to follow their journey:

Elisabeth Maxine Scholes

Another stroller picture because she's always so at peace and comfortable when we go walking. She is scrumptious!!

Please continue to share Everly's website and also her FB page...Love For Everly...as we work diligently to get her the care she needs.  The medical community does not sometimes see past the diagnosis and instead the individual child.  We never expected to have to work so hard to get her the medical care she needs.  Please pray for our family as we do so.  Pray for her health, pray for our peace and pray for discernment on the part of the medical professionals who will be caring for her.

Last, I have included just a few random favorite pictures with this journal entry.  We snap no less than 50 or more per day so there's always an abundance to choose from.  Enjoy!

With love and appreciation,

Crystal

Home Sweet Home

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,

Crystal

FAMILY TIME!

We are heading home now for about three hours to spend time with the boys and my parents. Because we've been blessed with meals arriving, it's one thing we don't have to worry ourselves about. Thank you to all who are helping our family in this way. Our plan is to come home daily for dinner and visiting with the boys before returning to the hospital.

The boys, much to their dismay, are staying home from hospital today. She is under light therapy and can't be held right except for a time or two so hopefully tomorrow they can come.

I'll keep you all posted! Prayers please to continue!