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
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
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