A Look Inside

Wednesday, July 9, 2014

 4th of July fun at the beach

Some days are so easy.  The kids are laughing in the house, Everly is alert and looking around and we ready for school.  Then, like clockwork, we break for lunch at noon and then head back into school mode.  The afternoon is interspersed with periods of free time, reading and baby therapy and maybe even a bath for her.  **On non-therapy, non-doctor days...so basically this means a day or two a week....haha.**

Some days are hard.  Those days look the same as above with one glaring exception:  a reminder that Everly isn't looked at like "other" children.  No, I don't mean by friends or family.  I am referring to the medical community as a whole.  But I'm also referring to some who've been assigned to Everly specifically.

Today was one of the hard ones.

See, I have sheltered you all (forgive my misuse of "you" here) from the true facts for a while now.  I've previously made small mention of the fact that the "medical community" believe that babies with Trisomy 18 are essentially "incompatible with life."   However, what I have not told you is that sweet baby Everly has become a victim of this archaic thought process as well.  I want to use this post to give you a look inside.

 Yup, I'm cute. Go ahead and say it! LOL

Since the day we were told of her diagnosis, she lost her identity as Everly Marie Hopkins, daughter of Jimmy and Crystal Hopkins, to some.  She is first a diagnosis and essentially only a diagnosis.  Trisomy 18.  A diagnosis that we are constantly reminded will result in her early death.  It's as if they think we may have forgotten the statistics that have been drilled into us.  Seriously?

While the journey itself with Everly's health is difficult, having to worry about the care she is receiving is not something I had accounted for at all.  This adds a level of complexity, stress and anxiety that, frankly, should not even exist for my family or any other.

See, I haven't posted about this part of our journey because it's painful and scary.  Yes, certainly worrying about her health is scary as well but to not have faith in those who are entrusted to care for your child is downright terrifying.  It's a gut-wrenching kind of terrifying.  Not having a medical background and answers myself, I must rely on the doctors for guidance and instruction.  And these decisions can mean life or death in our case.

Sydney this one's for you!

It was made abundantly clear to us even from the NICU by some that her fate was sealed.  The implication being that interventions and surgery are absolutely out of the question.  At the beginning, we likewise felt that we would not want to do anything invasive for her.  However, she is not going by the "Doctor's Guidebook on Trisomy 18" as it were.  She continues to grow and to thrive, neither of which we were given any hope would happen.  We've since decided to follow her lead and offer her all the medical care we can.  She's in charge.  All are created equal, no matter the diagnosis.  All are important, no matter the statistics.  All deserve to be cared for and given a chance.  Only God knows our last day and only God knows His plan for us.  Only God.

But guess what?  She does not "qualify" for surgical interventions or repairs that may help.  Why?  And I promise that I'm not making this up...because of her prognosis.  Okay, so let me see...we are all going to die one day, too, so then using that same rationale, would mean that no surgical interventions should be offered to any of us either then?

Doesn't make much sense, does it?

I get that our babies (yes, in our small Trisomy community, all the babies are "ours" collectively) would be present a challenge for the surgical and anesthesiologist teams.  I get that some doctors and hospitals do not want to take the "risk" for statistical reasons.  I get that some see it as a futile thing to do.  But lest I mention that if the baby was theirs, they most certainly would want the options to exist.

Thanks to the Burkes family for my awesome onesie! Ice cream for Jesus!!

See, we don't have many options currently for Everly.  We have been told flat out...are you ready for this...that we would be "lucky if any surgeon in the country would touch her" implying that the risk, again, was too great.  For who?  The baby or the doctor?  We know there are risks involved.  There is for ANY surgery.  Some surgeries for her would not make sense to put her through while others are palliative ones that would offer extended life as we understand it.
Unfortunately, this mentality also spreads to other specialists and in other areas not necessarily related to surgery.  Some of which I personally have not experienced but know of families who have experienced it.  Some families who receive a prenatal diagnosis are encouraged to terminate the pregnancy when they find out.  Others are advised that comfort care is the only logical course of action after birth if they decided to carry to term.  Still others are given no hope, no positives, no even light that some time with their baby is even possible.

Why can't the doctors see what babies with Trisomy 18 CAN do instead of all they supposedly can't do?  I was lead to believe that Everly wouldn't most certainly be here at this point 4 1/2 months into her life.  I was lead to believe that she would not be able to move, to interact, to be a viable part of our family.  Wow!  If they could just spend a day in our life with Everly, what they would learn!  Or any of our friends with T18 for that matter!  Their mindset would be forever changed!

Many doctors work in groups, so collectively the practice will make a determination as to what interventions and repairs will be offered or not to babies with this diagnosis.  The problem with that is all the gray area.  Not everything is black and white.  Not everything fits in a box.  So what then?  Well, left to those in charge of my daughter's care, they are treating her symptoms that appear but not offering any kind of fix.  No, I'm aware that they aren't able to take away the chromosomal abnormality.  But Trisomy 18 itself will not cause a baby's early passing.  All the other ailments, like apnea or heart defects, will likely be the culprit.  Logically then if we can correct, repair or treat these other issues, then realistically a baby's life will be greatly improved and lengthened. 

Isn't that what the doctors would insist on for their own children?

Of course, they would.

I would not believe for a second that any of them would just throw their hands up and say, "Well, she has *** and will die one day, so let's just allow her to ride it out."  Never, that's just silly and preposterous.

I believe that these physicians have been given a special gifting by our Great Physician.  I know that when used wisely their skills and talents can make a world of difference.  I pray that through Everly and her friends the doctors' eyes will be open to the possibilities for these sweet beings created by our God.  I pray for their courage to stand up and go against the grain in supporting the lives of these miracles.

One of the reasons that I continue to post here (well, really it's my therapy and to record our journey) is to help others to see the inside of our lives.  Yes, I mainly try to post the upbeat and positive because, truth be told, it's better to focus on that in general.  However, to be authentic, I must be honest.  And from the beginning, I have chosen to be brutally honest with the exception of this one aspect.  But, I know that I'm doing Everly and all special blessings like her a disservice by not sharing the truth.

A crucial point that I must make here, though, is that not all doctors and support personnel fall into the category I have described.  Everly has a few who I know look at her just like she is a typical baby and for that I am so grateful.  Look, I'm still thinking about Italy from time to time but know that I'm now living in Holland.  So, to have my dear sweet baby treated and cared for as any baby would be warms my heart.  Our family will forever be thankful to those who have honestly opened their heart to Everly and who genuinely care for her.  What a special doctor or provider it is that can take their book knowledge but apply their heart knowledge at that the same time!

But, yes, we have had (notice the deliberate use of past tense here) and do have doctors and providers who do see her as a diagnosis.  We know this for, oh, so many reasons and at some point we may share.  But for now, suffice it to say, that we know who's on "Team Everly" and who is not.  Period.  We are working diligently and rapidly to ensure that all who care, truly care, for her are on her team.  We want to love these doctors and, in turn, want them to love our daughter and offer her what anyone else would be offered.

So, here I sit at my computer, pondering the next step.  Decisions need to be made pronto about a few intensely critical issues and our faith and trust in our local doctors has been crushed.  So where do we turn?  It's not as easy as just choosing a new doctor.  For one, not all doctors feel comfortable seeing patients with Everly's condition.  And for another many do have the aforementioned mentality that we seek to avoid.  So, we are in a quandary.

My point in writing this is to enlighten, to inform and to educate.  My friend, Dana, believes as do I that her sweet Melanie is doing a work in the hereof the doctors and nurses that interact with her.  See Melanie is still in the hospital from a procedure she had so long ago.  While we don't know God's plan, we do know that God is working through Melanie.  She is a hero and is paving the path for other babies with Trisomy 18.  She will give hope to other parents who get this diagnosis because those doctors will see firsthand the possibilities and not the improbabilities.

My prayer is that through Everly and our family, too, that our interactions will impress upon their heart and soul an overwhelming sense of duty.  A duty to care for God's children.  A duty to share hope and not despair.

I implore to share Everly's story, either through her website or through her Facebook page.  Let's let the world see what a special blessing she and her friends are to their families and to others.  We have to do our part to educate and inform so that the path is made easier for other babies and families.

I would be remiss if I closed without giving an update on baby Everly, especially for those who are unable to follow the quick updates I post on Facebook several times each week.

She is 140 days old today and weighs in at 9 lbs and 5 oz!  She is truly enjoying trying out licks of homemade baby food.  So far, she's tried carrots, sweet potatoes and applesauce.  She's not quite anywhere near taking a true bite or swallowing anything chunky, but licks are a great start!  She likes it and it's fun for us to watch!  It also helps to prevent any oral aversions.  By the way, in case you were wondering, we were not ever successful in getting her to take the bottle or the pacifiers again.  But, on the upside, she is doing well with trying these new tastes.  She gags super easy so the spoon can only touch the tip of her tongue, just enough to meet.  Hopefully the more practice, the more comfortable she'll be.  

No more seizure activity which is a blessing.  We did have a period of 4 days with zero reflux and what a relief that was then.  Unfortunately, it was short lived and it's back again.  We have an appointment with the GI doctor next week but I think it is what it is.  We've already switched meds and have already discussed this so I don't anticipate any changes.

Don't forget, Everly's 6 month birthday celebration, The Princess and the Pea, will be held on August 23rd from 3-5 p.m. at the Westchase Swim and Tennis Center.  All are welcome to join.  LOTS of fun games and activities are planned!Please be mindful that if you or your family is or has been recently ill, that you refrain from attending for Everly's health.  Thank you!  **Please RSVP to my email or text me if you plan to attend and how many so we can plan accordingly.  We hope to see lots of you!  If you are unable to attend but would like to send her a birthday wish, the address is:

Everly Hopkins
3905 Tampa Road #2696
Oldsmar, FL  34677

With love and appreciation,



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