Hospice

Studying mommy's face. 

Well, it's been a couple of weeks since my last post so it's definitely time to update! Nothing deep or even philosophical in this post, just a basic update on hospice and our walk with them over the past 6 months.

Everly & Hospice: This is probably the most significant change right now. There was a whisper about discharging Everly from the hospice program but nothing as of yet has come of it. With her diagnosis, our hospice nurse has assured us that the doctor would be less likely to discharge because he knows that her health can turn on a dime. So, while I love the idea of being discharged and pray she is one day, the fear of having no resource to call upon after business hours is somewhat frightening. The ER is really not a viable option for us in our opinion, though each family chooses for themselves. But even hospice has limitations.

 Gorgeous girl!

In addition, our hospice nurse went on medical leave starting last week and isn't due back until Thanksgiving. While I have been optimistic about the transition to the nurse covering for ours, my worst fears were realized this week with the new nurse. Truth be told, there's been a few areas of concern for us over the past 6 months with hospice. I haven't discussed them, haven't written about them and haven't even addressed them officially with hospice management until yesterday. The crux of the program is to provide support and comfort to patients and their families in the end days of their loved ones life. But what happens when the patient doesn't respond the way everyone had expected?

Trying out our blooming flower bath. She liked it and a plus is that she can eat while she's taking the bath!

In an effort to be honest, transparent and real, I'll share with you all a few of our ongoing struggles. I would like to preface my explanation by saying that I believe that after yesterday's incident, we might be on the right track now. I could very easily make this pages long so to avoid doing so, I will bullet list some of the issues we've had:

Hospice pharmacy has given us the most cause for concern time and time again. Once by doubling her dose of albuterol at 3 1/2 weeks when she had pneumonia. We didn't catch it until 3 days into her receiving the albuterol treatment. Then repeatedly delivering meds that are supposed to be refrigerated that were warm and clearly not refrigerated. And then if I do not accept one part of the delivery of meds (say, for instance, the unrefrigerated med) then they must return the entire order, not even allowing us to keep the correct parts. In addition, they do not want to dose out more than a mere week at a time of meds having us to continually for 6 months need weekly refills. Not providing more than 1 or 2 syringes with each refill to last a week and sometimes providing none, keeping in mind that ALL food and meds must go through Everly's NG tube with a syringe. A few other smaller issues that just compounded the whole pharmacy issue as a whole.

On Call: If I need to contact a hospice nurse to check on Everly, it is entirely possible they will not have a pediatric RN on call. It has happened to us before. It is also entirely possible for them to need medicine for your infant and the doctor on call is not a pediatrician either. It has also happened to us before. See, hospice mainly, as you can guess, is geared to the elderly sector of the population. So, when Everly had her seizure that lasted all night when she was four months old, the nurse who was on call that night didn't know that rhythmic tongue thrusting could be seizure related. Therefore no meds were prescribed to stop the seizures. Come to find out, there is a "hospice kit" with emergency meds like those that stop seizures placed in the home when they are on hospice. Only we didn't have one and didn't even know it existed. Why? Because they don't have them for Everly's size. Plus, nurses that came to our house when Everly had pneumonia weren't all experienced in pediatrics at all. It's hit or miss depending on the day and who is working.

Doctors: There is one pediatric doctor for hospice (tells you how many ped patients there are, right:). Yesterday was the first time he ever came to visit Everly. He did happen to be touring St. Joe's right before we came home from NICU but that was because he had just become employed with them and was getting the lay of the land. But we don't have any regular doctor visits or check ups, except with our private pediatrician. I also believe we are one of the few private insurance families with hospice. We were told that if we were Medicaid that we couldn't go to the mountains without withdrawing from hospice.

 

Cute baby sandals my friend Dana's mom crocheted for Everly.

Supplies: Okay, this is probably the MOST stressful of all things. There are certain items, as you can imagine, that Evelry must have just to survive, NG tubes, various size syringes, specialty (not on shelf) formula, cannulas, oxygen regulators, etc. The last time I checked they aren't your ordinary Target items making us dependent on hospice to provide them for us. However, again everything is doled out on a weekly basis. The assumption being that if a hospice patient passes then the supplies and such are unusable then. I'm okay with things being given once a week BUT if the person who visits you each week a) gets sick herself and can't make it to you or b) comes on a Monday week 1 but then Friday week 2 and so on, there's a period of time where you could be without. I can only feed Everly via her NG tube by using syringes (called a bolus feed) or the feed pump which we usually reserve for middle of the night feedings with her supplemental formula. So, time and time again we were left waiting with baited breath for our delivery and yes, once our nurse was out sick and we were in a panic because we had no more feed bags for the pump left and a couple of prescriptions were due asap. The syringe issue is one all on it's own, let me tell you. The syringes are actually single use only but we have to use and reuse each time we feed her. They become stuck and pop when they've been worn too much. Because we are only handed a few at a time, we are VERY careful with them. They have their own bin, place on the counter and never go in the dishwasher. We baby those things. We have been left before with only one "good" to use and it is scary. I know you all with typical kids (like me before) might not get the enormity of that but it's equivalent to you having a spoon for your child but only one jar of food to last a week and a frequent traveler is the only person who can get you more. You worry each day. You know it won't last. And you can't get it anywhere else. Another big concern is that they don't carry many pediatric supplies so when Everly needed continuous oxygen they only had an concentrator with an adult regulator. It wouldn't go as low as her oxygen requirements were. We didn't know that at the time as this was all new to us. We were even delivered adult nasal cannulas for a two week old baby that weighed 4 lbs. Hmmm...really? We did get that corrected BUT it was just one more worry at a time when it was the last thing we needed to be dealing with.

All this to say, this all lead to what came to a head for me yesterday. I contacted hospice yesterday because I still hadn't heard from the new nurse and since we need them weekly, needed her to order Everly's meds and bring her other supplies. I won't get into all the details but let's just say when she arrived yesterday, things went downhill QUICKLY. No assessment of Everly was done, no supplies were received and no meds were delivered and it was Friday.

I was worn out from dealing with all of this week after week with hospice so I called my mom, aka The Bulldog, to take over. She had been past the point of frustration with it over the past 6 months and was ready to make the call. I hadn't called at all about it because I kept thinking it would get better, be patient, offer grace, on and on. So, not once did I call and complain or speak to anyone outside of our regular nurse about the issues. But I was done yesterday. Just done. I knew I had 3 more months without our main nurse and there was NO way I could continue this way. In addition to the stress of having a medically fragile baby and the care she needs, the day to day worries about her health and future, I did not need the additional stress of worrying if we had supplies, begging to get this or that and counting to the last little drop of a med for fear we wouldn't get the next refill in time.

So, there was one more glaring hiccup later in the afternoon, my mom had already called and spoken to a supervisor and was then at an appointment, so I had to call. I finally after all these months shared my concerns, my tribulations and my wishes with the supervisor. It felt good to get it out, voice my concerns and then to know finally that some resolve might come of it. By last night, I had been delivered a bag of 100 3ml syringes, a bag of 100 1 ml syringes and a box of 100 10 ml syringes. The decision was made by the supervisor to transfer all of Everly's prescriptions to my favorite local pharmacy (shout out to Beth and Jeff) and hospice/my insurance would continue to be billed but we were more in control now. The last issue of the new nurse has not yet been resolved and there's still three months left. So, at this point, I am thankful for the solutions and pray for peace and patience for the last remaining challenge.

I have chosen to write about this one because these updates are my way of documenting our journey and two because I hope that we can see some changes in the pediatric hospice program. Look, it isn't right that there is EVEN a program meant for babies, infants and children in hospice. It's not the natural order of things. I KNOW. I GET IT. My daughter is their youngest patient. No other baby with Trisomy 18 has been born at St. Joe's since Everly in February. I verified with NICU and with the hospice doctor yesterday. However, since they do have a patient this young and was 14 days old when she was admitted to their program, we would like to see that it is appropriate for her. There's so much more I could have written and I have held in for 6 MONTHS but I just couldn't anymore. I hope that in the future, they take into consideration the needs of the youngest patients and what enormous stresses their families are under and how they can make things just a tad easier on them. This post isn't A person. It's about making the program fit for pediatric patients better.

Please join me in prayer for our peace in this situation. Please pray for resolution and guidance. Pray for the nurses and doctors who take on this difficult assignment of caring for babies with a life limiting diagnosis. Their hearts must break. Please pray for our sweet Everly as she continues to thrive, grow and defy the odds.

With love and appreciation,

Crystal

A Friend in Need is a Friend Indeed

 She looks so good in these colors!

I usually do journal entries based on whatever is on my heart at the time, whether it's her overall health updates or our social security fiasco or just random thoughts about her.  About three weeks ago I began to have a stirring about writing about friendship and how it relates to our current journey.  But time escaped me and day after day, I tried to sit down to write but things kept getting in the way...someone needing something, baby care, school, and just plain exhaustion at night.  I must be "in the place" mentally to write and with distractions of any kind or just being tired, I'm not able to get it out.  So, here I sit, three weeks after I have essentially written what has been placed on my heart, ready to put it out there.

 Sleeping Beauty!

I stand in awe at the lessons I'm being forced to learn on our walk right now.  I'd like to say run just because I want to get through it quickly, wave a magic wand and have everything fixed and made okay.  However, I know that if that were to somehow magically take place, I--and I earnestly pray others--would not "get" what we are supposed to "get."  So, considering that little tidbit, I will accept the lessons, messages and perspectives as they present themselves.  And laying aside all of my own deep desires, the truth of the matter is that God created Everly EXACTLY as she was meant to be.  She is perfect in every way.

I would like to share now a lesson on friendship and what that really means.

Here goes...

When you first receive a life altering medical diagnosis or are in a serious crisis, for the most part, friends tend to come running.

All hands are on deck.

All the friends you thought you had are actually there.

There are some, however, who just aren't capable as much, maybe, as they'd like to be able to handle personal difficulties, even when those challenges are not their own.  And they bail before the crisis really even begins.  You don't hear from them, there's no messages of hope, there's no wishes of good will.

So, there's two camps of friends out of the gate of a crisis:  one is all in and the other is all out.

It's pretty simple to identify them.  Please don't get me wrong here.  It's not a criticism because I know of three specific times in my adult life that I was in the "all out" camp.

Let me explain why I was and why maybe some others fall into that category, too.  Knowing something truly horrible or scary is happening or will happen makes people uneasy.  It's our human nature to want everything to work out.

Isn't that how all fairy tales end?  "Happily every after"

But, guess what, things--life--doesn't always work out the way we pictured it.  And for some people it is easier to just pretend the crisis isn't happening, to ignore the people involved or to simply give a small nod about it but then not involve themselves further.  Some crises are so unique and daunting that people can't put themselves in your shoes, so they don't feel they are equipped to be of any help at all.

Look, your situation may be scary and scary isn't fun.

Yup.  I did that.  Not proud to say it but I did it.  I did not know what to say to the friends in the medical crises.  In each situation, I felt ill-prepared, at a loss for words, and honestly, scared, both for them and for myself.  You see, I knew I should do something but didn't know what I should do.  So, I just did nothing and said nothing really.

My heart was involved, I thought of these individuals, prayed for them and truly wanted to reach out.

But I didn't know how.  And by the time I thought I had figured out how, I was then worried that I had let too much time lapse and was now embarrassed.

So, again, I did nothing.

But there's another phenomena that happens when friends go through life altering crises.

When the immediate crisis is somewhat over and things are settling in with whatever the diagnosis is, there's another camp of well-meaning friends that might think all is well and not reach out as much at this point or just in scant handfuls ever so periodically.

Messages are few and far between.

Attempts to get together go unrealized or left alone.

Offers of help are no longer voiced.

Through no fault really of their own, they might not realize that your storm still rages but at this point you've just put on your rain gear and you are making your way.  You have to.

But then...

There's a camp of friends that have been given a gift from God.  It is the only way to describe it because, look, it is not easy AT ALL to BE a friend to someone in an ongoing crisis.

See, it's relatively easy to be a friend when a crisis happens and then ends quickly, a car accident or the loss of a job.

But what about one that has no ending, one that lingers?

See this is where the rubber meets the road.

At this point, the friend-weeding process is well underway.  You should be left with those who by all definitions are friends in every sense of the word.

And, look, let's be honest...there are some situations SO unique and frightening even that you don't know what to do.  But guess what?  The person living it probably doesn't know what to do either.  They just want to know that you are there for them.  They want to know they haven't been forgotten.  They just want to know you still care.

I found this quote on my favorite while-pumping-have-to-do-something-go-to-Pinterest.

"True friendship isn't about being there when it's convenient, it's about being there when it's not."  

Wow.  Just wow.

I want my daughter's life to make me a better mom. A better wife. A better teacher. A better friend.

I want to make her proud.  I want her to know that I'm using everything I'm learning while being her mommy to do better, be better and maybe even to help others.

I have learned SO much about this friendship thing since our story began.  I have been disappointed.  I have been shocked.  I have been pleasantly surprised. I have been thrilled.

 

Oh, yeah, the little girl is rockin' the pink ruffles!

I will be completely candid with you.  When I realized why I had cowered away from my friends' situations, I reached out to them.  Pride can be ugly and I didn't want to be ugly.  Sometimes humbling yourself is necessary.  I apologized for not being there for them when they really did need me.  I explained why but wanted them to know I didn't think it was an excuse.  They were both so gracious as to accept my apology.  Let me also tell you that both of those amazing friends are in the camp of friends who have stayed the distance with us...and that was before I reached out to them!  

You see, you can't go through life altering medical crises or terrible personal situations and come out the same person.

You just can't.

I believe those special friends learned the same lessons I did and vowed to be a better friend to others in times of need.

And if you were doing your math, you would know that I have one more call to make.  I'll be taking care of that pronto.

To illustrate some of the ways I/we have been helped over the past months, I am going to list them:

• Meals (fresh and frozen) or meal gift cards (Yes, yes and yes!!)
• Offering to take boys over for playdates  (A blessing for them as they don't get nearly as much right now.)
• Offering to pick up/drop off boys for events/activities  (Such a big help!)
• Bringing takeout lunch AND visiting at the same time (Hallelujah!)
• Unexpected texts (so good to receive anytime)
• Supportive emails, emails and emails EVEN and in spite of the fact that I have barely responded
• Weekly get togethers at my convenience and at a location best for me (this is important in a tough situation)
• Unbelievable portraits taken by a dear friend who donated her time and talent for us (and was VERY patient!!!)
• That same dear friend who came back a second time for more photos and nailed the one dream one I had!!
• Donation to the Trisomy Foundation in Everly's honor (really no words about this one!  My heart swells with love.)
• Hiring a photographer to capture special memories (This was super special and a wonderful surprise!!!)
• Starting Everly's Facebook page when I couldn't think straight (Would never have done it and it's so imp to us!)
• Texting in the wee hours of the night (Some nights it's nice to have night owl friends.)
• Listening.  Just listening.  (Sometimes it does a mama good just to talk.  No advice needed.)
• Having the house cleaned professionally and offer of a group of friends doing it.  (What a sacrifice!)
• Offers to assist with lesson plans, party preparations, etc.  (Giving of your time is such a treasure!)
• Being understanding and flexible (Emotions sometimes pop up when you least expect it.)
• Respecting the health of my baby (Thank you to all who stay away when or just recovering from illness.)
• Offering special things to help (Special pillow so a tiny Everly could sleep on mommy's chest)
• Ordering a therapy item and having it delivered to our home because you knew she need it (Just awesome!)
• Financial assistance for the piles of medical bills.  (Such a relief of burden from our shoulders.)
• Delivery of snack boxes for a few months (Who knew my kiddos would love Poppy Seed Sticks??)
• Offering to assist with research for new doctors (What a unique but so helpful offer!  Must remember this!)
• Taking me and sweet pea out for coffee AND sitting outside because it was safer for her
• Having special packages show up at the house unexpectedly (What a treat!)
• Taking pictures of my boys in my absence and sending them to me (Everyone knows how imp pics are to me!)
• Embroidered or monogrammed outfits/things for Everly (You know how much I LOVE her name in print!!!)
• Contacting people on our behalf that may be able to help in our social security attempts (Thank you!)
• Gifting us with your talent (Some people have a true gift to be able to comfort.)
• Understanding that as much as you want to hold Everly, sometimes I can't part with her, not even for a moment
• Understanding that my emotions run the gamut right now and change many times within one day (It just does!)
• Coming to my house and using your God-given gift to check on Everly (You can't put a price on that!)
• Sending me pictures of eCards or pictures with inspirational or funny statements (Love these!)
• Making something personal and handmade for Everly (Everyone knows how much I love this kind of treat!)
• Remembering my boys. (This is hard for them, too.  Mom and Dad are busy or gone and tons of changes.)
• Commenting when I write a journal entry or a Facebook update.  (Not sure why this strikes me as so important but it does.  If you comment, I know you're checking in to see how my precious baby is doing, I guess.)
• Messaging me important updates or interesting articles that might be beneficial (weather ones are always!)
• Sending me reminders of upcoming deadlines or events (SO helpful when we have tons on our minds)
• Empathizing with me when I hit a rough patch or scary event with Everly
• Putting aside your professional title and coming over to check on Everly when needed
• Sharing Everly's pages and story with other people (really shows how important she is to you, too)
• Getting to the end of all my journal entries (shows you either really love me or there's nothing good on TV)

So...all this to say, it actually isn't as hard as I thought to "be there" for someone in need.  And most things that are free but just cost your time.  Time=Love  My hope and prayer is that Everly teaches us among other things...how to be a better person to others.  Feel free to use any ideas from my list to bless another friend in need.  If they are your friend, they are worth it! 

The best thing you can do for a friend in need is anything!

The worst thing you can do is nothing.

I love you all and am so immeasurably blessed by so many.

 

Everly's new therapy incline good to improve her head control!

Proverbs 18:24   A man of many companions may come to ruin, but there is a friend who sticks closer than a brother.

With much love and appreciation,

Crystal

 

Played so hard that she feel asleep. Sweet girl!!

Just checking in...

 Photo of Everly at 2 months taken by a dear friend of mine. This is perfect.

 First let me apologize for the two week spread between journal entries.  It has been very busy around here, mostly in a good way.  So, as a special treat for your patience, I plan to publish two separate entries tonight.  Stay tuned...

As hard is it is to believe, I just found out that not everyone is on Facebook!  I know...shocking, right?  LOL  I like to post frequent pictures and updates there, albeit short and sweet.  So, for anyone not on following Everly on Facebook, I'll share with you the highlights from the last two weeks.

Here goes...in no particular order necessarily and with no particular pattern here:

Mommy and Everly made a rare trip to Barnes and Nobles, well, actually it was her only trip thus far.  But, never you mind, because it was a fun night visiting with mommy's homeschool friends and even met some new ones.  We drank some ice coffee, chatted and even "Aunty" Sarah got to hold Everly while mommy pumped.  It was rejuvenating and refreshing to sit and discuss school and the new year, co-op classes and high school testing.  I just love this time of year!  Once a teacher, always a teacher and there's something so exciting about the start of a new year.  I'm excited just thinking about hitting the shelves for some school supplies!  Come on, fess up...am I the only person who loves the smell and look of a new box of Crayola crayons??

So the fun continued to the next night as our homeschool group had a family evening at the beach like we did in June.  I love those nights and so does my family!  It's a wonderful time for us to safely visit and connect with those we love so dearly.  We are so blessed to be a part of a community that cherishes family and spending time together like we do.  It does so much good for the soul.  After those two days, I was ready to hit the next week running!

Feeding:  Well, I continue to give sweet pea baby food but rather than the bites I was somewhat really expecting from her, they are actually more like licks.  I tried to put a bite in her mouth the first time and that wasn't the best plan.  So, we are just encouraging her to be okay with things near or in her mouth at this point.  I think I even saw out of the corner of my eye my mom sneak a bit of whipped cream into Everly's mouth, too!  It's okay, though, because we were celebrating my parents' 42nd wedding anniversary so that definitely called for a treat and a bit of rule breaking!!  Back to the feeding, our therapist just wants us to encourage Everly to be comfortable with spoons, textures, and such so she doesn't create an oral aversion.  So far, so good with that!  She does stick out her tongue but doesn't quite have the reflex to close her mouth and attempt to swallow what she has on her tongue yet.  She only gets the taste when she naturally and eventually closes it.  We're still working on it!  Slow and steady wins the race, right?

I am, however, reintroducing the pacifier.  She seems to want to do something with her mouth a lot now and so I thought that might help her.  While she does gag and choke if I put it actually in her mouth, she likes to just play with it with her tongue right at her lips.  She really gets into it and goes to town which is really cute to watch.  For now until she gets more accustomed to the feeling, we'll stick with that.  But that's progress and we'll take it!

Physical:  We are so excited because I was able to find the Tumble Form chair that our therapists use on a medical supply exchange board!  She loves it and it comes in so handy!  Believe it or note, there are actually times when she does NOT want to be held--insert gasp and whimper here--much to my shock and chagrin!  Most of the time she's on her back or being cradled or even facing my chest in the Moby wrap, so I guess I have to understand the excitement that she gets from sitting straight up looking at the world.  She doesn't like it, though, for longer than about 10-15 minutes but I'm happy that we have it for her.  At first I couldn't understand how it was any different than a bouncer but now that we have it and have used it, I do see that is really a therapy-style chair perfect for babies/children with low tone.

Doctors:  Thankfully, we have been light on doctor's appointments this month.  We don't see the pediatrician until next month when she turns 6 MONTHS OLD!!!  Can you believe it?  More on that later.  Our GI appointment in a nutshell had the most changes that we've ever had.  Basically, she needs more calories but we can't increase her volume too much.  So we'll be increasing the fortification with extra calories from formula which we have been doing all along but now will be adding a bit more, increasing her volume of breast milk per feed and also adding some water at the end of each feed for increased hydration.  Her reflux medication has been increased and since we've done that, we've only had a couple small reflux episodes!  That's really amazing!  It is comforting to see her not struggle with choking or the difficult episodes as a result.

Cardio went fine, no change.  I honestly need to do a complete entry just on this issue alone but it's such a hard one that I haven't yet been able to bring myself to do it.  One day I will, promise.

Our family is gearing up for the new school year to begin in our home.  Trying to make LOTS of plans now so that it will go as smoothly as it can possibly go considering our circumstances.  Garren, our 10th grader, will be doing a couple online classes and several co-op classes in two different co-ops in addition to my work with him at home.  I never outsource Language Arts/English/Literature so that is all mine, mine, mine!   :-)  It's my happy place!  Kendan, our 3rd grader, will be also doing some co-op classes with our friends and the rest at home with me.  Thank you, dad, for being so willing to take them to their co-op so they don't miss out!

We'll be making a rare trip to the store soon to pick up school supplies.  Have I mentioned how much I love a new box Crayola crayons??  Really, there's nothing like the sharpened, unused tip of a new crayon.  Then finding the new spiral notebooks each year...whatever is popular or inspirational...and the coordinating folders...the fun erasers and pencils...ah, the joy!  Oh, and I love pencil boxes!  Have always had a slight obsession with them!  I actually have one that is so old, I mean, like from when I was a child, that the family knows is somewhat of a no-touch item.  I do still use it and yes, I do take my pencil box with me (before now, let's say) when I go to meetings or co-op and such.  Okay, I see that I have gotten completely distracted by my love of August and all things school.  But, seriously, this is the BEST time of year!  I'm sorry I won't be starting it off with my students that I tutor but sending them hugs and well wishes from here!

Okay, back to Everly which is, I know, the reason you are reading this...if you still are!  She's busting out of her newborn clothes finally at 5 months old and is moving into 0-3 months.  So, lots of "new" clothes from the closet will be making appearances soon!  She's now 9 pounds and 12 ounces as of yesterday's check.  She is 156 days old today and is still cute as a button!   She's doing lots of "stuff" with her mouth and really exploring the inner workings of her tongue and how to move it.  She's started talking to us this month which has been fantastic!  I'll include that video in the next post shortly as only one video per entry is allowed.  She's also started smiling at us!  It never gets old.  I'll include that video with this post.

There's so many other things, stories and bits about her I'd love to share but I know this would be pages and pages long if I did that.  Just suffice it to say that she is amazing and continues to surprise all who know her!  Her story is not over yet!

Don't forget that she is having a big 6 month birthday bash next month!  We'd love for all who can make it to join us!  There will be fun, games, snacks and cake for all.  The actual invite is on Facebook for RSVP purposes so if you're not on there but would like to join us, please let me know so we can be prepared.  Much appreciated!  I am posting a picture of the beautiful invite done by Lauren Haddix Designs but it will be too small to read the details.  So here's the info:  Aug. 23 from 3-5 p.m. at the Westchase Swim & Tennis Center, theme is Princess and the Pea and younger guests are invited to dress in prince, princess or brave knight attire if they would like.  We are asking that if anyone or anyone in their house has or is ill that they refrain from attending so we can keep Everly healthy.  Thank you!

 

My favorite photo of sweet Melanie Rachel. Isn't she gorgeous!! An angel indeed.

Earlier I mentioned that the last two weeks have mostly been good.  Well, on July 15, my dear friend Dana's daughter Melanie Rachel went home to be with Jesus.  We were all saddened by this great loss but comforted in the knowledge that she is with her Heavenly Father.  Her Celebration of Life was last night and was, in one word, perfect.  Her father, Michael, conducted alongside his father, the celebration and told Melanie's story from the beginning.  With rawness and authenticity, he shared this tremendously emotional journey with all who came to honor her short life.  Thank you Marquart family for allowing us to walk beside you!  Melanie Rachel was so very loved by all!

I wanted to thank everyone who takes the time to write a note or message to us, either on here, via text or through email.  You really have no idea how important that small gesture is to us.  Even my husband who is not on Facebook, goes on to check what messages have come through for us and checks here to read messages as well.  So, if you have the time, we would love to hear from you :-)

We continue to be in awe of God's goodness.  All the time.  True, we won't know here on earth why He allows things to happen and not other things.  True, He could save us from this pain but sometimes allows us to experience it.  But one thing is for sure and that is that God does not promise us we won't have storms, but he does promise us that he will go through it with us.  Without these big storms, would we feel the intense need to cling to Him?  To cry out to Him?  To go on bended knee to Him?  It's easy to forget His providence when things are smooth but it's when we must come to Him that we get to know Him, really know Him best.  Without faith in His good, devastating monster storms will devastate you.  Go to Him.  He's got this.

Continued prayers for Everly's good health is appreciated. Thank you!!

With love and appreciation,

Crystal

A Look Inside

 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,

Crystal

 

Little Sweet Pea

Listening very intently to her Nana singing to her.

Since we are still following the advice of our doctors in keeping Everly away from indoor spaces and large crowds, many of you haven't had a chance to get to know her personality as of yet. Still others are a distance away and aren't able to meet her. So I thought I would take this journal entry to give you an insiders view of her personality, complete with a video clip.
 
She is the cutest thing I've ever laid eyes on. I can hardly wait to wake her in the morning. The way she stretches and scrunches her whole body when I lift her from her bassinet. The way she opens her little eyes and focuses on me just melts my heart. I love to nuzzle her cheeks and her chubby neck. Her big eyes look at me when I bend down to kiss her and it just makes me smile. Some mornings she will just rest in your arms and stare at you as if she's memorizing your face. She is in deep concentration and you don't want to break the stare. It's so special! I can't get enough of her!

Such a sweetie pie!

She has become so expressive in the last few weeks. She is starting to make little sounds. We've also begun to notice that her face changes depending on the activity or even how interested she is in something. She has the faintest smile on sometimes when we are singing play songs with her. That is the newest thing and it has been so fantastic to see her change. I love to count to three before we start a song to give her "heads up" and maybe teach her a cue of what is coming. Just today we got lucky (well phooey on that...God blessed us) with capturing it on video!! I'm going to try to get it uploaded at the end of this entry. I gasped out loud when I saw the little corner of her mouth move upwards. It was a magical moment!


She has taken a great interest in her toys and surroundings the last couple of weeks as well. We are working on tracking with toys and helping her to turn her head and follow them left and right. She waves her arms and moves her legs while having playtime on the floor. This is great for her physical development so it's thrilling to see. She has favorite toys that clearly prefers because she focuses on them for great periods of time, like her cow, a pink dog and a baby doll (thanks Melissa, Sandy, and Susie!). She is so much fun! She is a curious being and loves to be carried around to check out her surroundings, too. One of her absolute favorite things currently are lights. Flashlights, fan lights, ceiling lights and now we have her two projector lights. One I bought with ocean waves and one we were gifted (thanks Cindy!) with stars. She can fall asleep just staring at them.
 

Love the little tongue sticking out!

She is a very happy and easy baby. She rarely cries and the times she does we can predict because we know what she doesn't like. For example, you can put money on the fact that she will cry when you take her out of the tub. She is wrapped snug in a thick towel the second she leaves the water but she will cry anyway. She goes with the flow typically and seems to be content with most things.
 
We have become very comfortable with her after twelve weeks. A couple of weeks ago, we decided to remove her from constant monitoring with the pulse ox machine. The beeps were stressful and we know her well enough to see when she needs oxygen or stimulation. She does still have the monitoring in the car, during naps when she's not closely attended and throughout the night, though. We have enjoyed the flexibility we all have without the machine so much more. She can be moved throughout the house with ease, can be lifted without setting off the sensors and does not have the cords attached 24/7 now. We are all breathing a sigh of relief!

Everly swimming in her tub at the pool. Look at her cute swimsuit!

As the mommy of a special needs baby, I am seeing how little milestones like smiling or recognizing faces are huge! Everly because of her Trisomy is cognitively and physically severely delayed so to see this progress is so exciting! The little things I know we as parents with healthy children take for granted...first smiles, recognizing family, holding her head up, giggles. But it makes those moments all the more special when they happen because for us since they aren't guaranteed to happen. So, it's like a Christmas present when they occur! 

We continue to be amazed every day as she thrives and defies the odds so very clearly set for babies with Trisomy 18. We are just in awe of this little girl!
 
Please continue to share her Facebook page Love For Everly and her website to spread awareness about Trisomy 18. Let's help the medical community see that their research is not everything!
 
"Every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change like shifting shadows." James 1:17
 
With love and appreciation,
 
Crystal