Happy Birthday!

 

Everly's birthday present from mommy and daddy! SO CUTE!

Yesterday marked Everly's 4 month birthday!  She has doubled her birth weight!!  8 lbs 8 oz

121 days...not one taken for granted.

What a special day it was for all of us that love this little girl!  She is surrounded by more love than would seem humanly possible.  Even though some have not met her in person, she has made a mark nonetheless.

She is such an easy baby!  The boys were such a challenge compared to her!  (Love you Garren and Kendan but sadly it's the truth!)  She usually goes with the flow, seeming to have the patience of a patron saint.  Waking her in the morning remains one of my all-time favorites of my day.  Her eyes open slowly and she begins to stretch and look around, scrunching her tiny body into a ball.  Then she just is wiggle worm on her changing table as I ready her for the day...happy, content and relaxed.  She knows the routine of car rides because as soon as she gets in her seat and the music and lights start on her seat entertainment toy, she just snaps to attention.  It almost always keeps her attention until she dozes off.  In the rare moments that she sleeps in her crib or other baby apparatus, she will wake and not even make a peep.  Thankfully we have the video monitor that we keep close tabs on in those situations since she's so quiet. She just really is so easy to care for all around.

 

Oh, my! How adorable is she?

She has a special way of studying your entire face when she is in her thinking zone.  Her big round eyes just linger over each part of your face as if memorizing every detail.  She takes after her Nana who is an investigator checking every last detail.  We all love when she studies us.  It is fun to watch as someone new to her holds her because she's even more interested.  There's a way she raises her eyebrows and crunches her eyes that tells you that she's in deep focus.

In her 4 short months thus far, she has managed to check off an extraordinary amount of experiences from her bucket list.  (Yes, she did tell me exactly what she wanted on this list if you are wondering!)  She has gone to the beach three times, gone fishing twice, tasted ice cream, looked at a shiny helium balloon, gone for two bike rides, been to the park and has hiked countless times around our favorite local trail.  We can't wait to continue to check things off as we  expand her list!  A few VERY special things we are looking forward to for her in the near future!

We are so grateful for her continued good health.  It remains to all of us an absolute miracle!  Even her doctors are amazed at how well she's doing, both overall and with her physical abilities.  Our cardiologist even commented that she is doing remarkably well "considering" and that her heart and lungs sound good.  The GI doctor mentioned how strong her neck muscles are becoming and was in awe of how well she was holding her head up.

 

I've kissed each part no less than a thousand times already!

Health-wise there are a few areas that we are working to improve for her.  One major issue is the frequency of her reflux episodes.  Not only are they not good for her esophagus but they also frighten her as she tries to hold the milk in and keep it down.  It is a 5-7 times a day battle for her and the current medication doesn't seem to be doing much to help.  She chokes as it comes back up which we always fear that could cause aspiration then possibly pneumonia.  So, we took her back to the GI this past week to discuss the situation.  She was prescribed another type of medicine that may work better for her so we have high hopes for it.  She begins it today so I'll keep you posted.  We also were told to increase her food intake now that's she's a little butter ball!  Hopefully her tiny stomach can handle the extra fluid.  If not, we will be fortifying her supply she is on now with extra calories instead.

Therapy continues to go well for her muscle tone.  We can see all the improvement and growth she's made.  She enjoys bouncing on the therapy ball and, of course, when they give her a little foot massage mid-way through session.  Feed therapy isn't going as well only because Everly's not really interested in taking the bottle.  She plays with it in her mouth and doesn't reject it but certainly has no desire to suck.  However, mama has a few tricks up her sleeve thanks to a chance encounter last week (although, we all know there are no "chances")!  Stay tuned to see how that turns out for us!

 What a sweet baby!

So excited that we will be beginning baby food this week!!  We have the go ahead from the GI doctor and as soon as mommy makes some homemade carrots and sweet potatoes, we'll get this party started!   Thrilled to be using our spoons from the baby shower and our stock of bibs that haven't been touched yet either!  We'll let you know how it goes.

While we are so thankful for where we are today, our family is also very mindful of other Trisomy families who are mourning the loss of their babies and still others whose babies are in the hospital.  Please keep their families in mind and pray for peace and comfort for them.  Precious Elizabeth has been in Heaven for six weeks now and today is her momma's birthday.  Our friend, Dana, is working hard to get her little angel home with her from the hospital as soon as she can.  It's taxing both physically and mentally so please pray for strength for her.

We have received many emails and questions based on my last Caring Bridge journal entry.  It has been asked that if someone donates to Caring Bridge as a tribute to Everly, will those funds go to her?  The answer is no.  They do benefit us in the sense that we are able to use this forum to share our story but the funds go directly to CB.  A GoFundMe account has been set up on Everly's behalf that will go directly to her.  A trust will be set up for her at the end of the month and the address for that will also be posted.  A special thank you to Toni Germinario for her idea to work on and set up both of those accounts.  Early on after Everly's birth, Courtney set up a PayPal for Everly and we thank you for that.  We appreciate the love shown to our family in so many different ways.  We are truly touched and appreciative!

http://www.gofundme.com/LoveForEverly

http://facebook.com/everlyhopkins
 

 

Sister laying on brother's lap.

We look forward to continuing to celebrate birthdays with Everly!  Save the date for the big bash...6 months!  If you would like to come celebrate it will be August 23rd from 3-5 at the Westchase Swim and Tennis Center.  Lots of fun games and a great day!  Surprise...it's a Princess and the Pea theme!  Yay!

With love and appreciation,

Crystal

The Cold Hard Truth

A work in progress

They started appearing first just one, then a couple, then a few more.  They show up now multiple times a week.  Medical bills and lots of them.

We hadn't really put much thought into Medicaid and the rules regarding it prior to Everly's diagnosis honestly. We've never needed it nor applied for it so it wasn't something we had ever researched.  As far as we knew, persons with low income or disabled were eligible.  Boy, were we wrong!

Rewind to February 25, 2014 again, the day we were told of her diagnosis of Trisomy 18.  It was a Tuesday afternoon.  My mom was rocking Everly and I was pumping when Dr. Mendoza walked into our NICU room.  She had her glasses in her hands and she had a sorrowful look in her eyes.  I knew right away what she had to say.  We had been waiting for the results of the FISH test which would either confirm or deny what the doctors suspected.  She didn't beat around the bush and came right out with it.

"The test results are in and your daughter has Full Trisomy 18.  I'm so sorry."

The blow hit hard.

She began to speak and I can honestly tell you that I have NO idea what she said.

None.

Early morning staring session with mommy

At some point, it hit me and then I began to sob.  My mom sat solemnly holding the sweet baby that Dr. Mendoza spoke of, who had this awful genetic condition that would take her away from the family who already adored and loved her.

Not too long after, Jimmy appeared in the glass doors, bags of supplies from the store in hand.  He knew when he looked at me through the glass what I was going to tell him.

The next few hours were a blur.  I vaguely remember falling asleep with her in my arms, tubes and connections tethered to her tiny body.  When I woke, I still remember the smothering sense of panic I felt when I realize it was NOT in fact a dream.  My daughter had Trisomy 18 and everything that goes along with the diagnosis.  I couldn't breathe.  I couldn't speak.  My heart ached in such a way that is indescribable.  Whispering because I couldn't get a full breath, I called Pastor Jerry from our church.  I didn't know what I needed except to hear about God's hand with what we were living.  I was so relieved he answered even though it was late that night.  Probably the most important phone call I had ever made.  The overwhelming feeling of being distraught.  Truly distraught.  It is something only God can truly help  with honestly but I will forever be grateful to the pastor for taking my call at that moment in time.  I have never felt such horror and shock.  It is like nothing I can even describe really.

I love my bath!

He offered to come to the hospital then but I was so physically and mentally drained, I knew that I would most need pastoring in the morning.  He and his wife, Jeanna, arrived at the hospital Wednesday morning and spent hours with us, listening to me cry out why and not understanding how this could happen to us.  We read scriptures and talked about God's plan and that we won't always know the answers here on earth.  They prayed over us and over Everly.  They left me with scriptures to study, to help with the grief I now felt.

For days starting that Wednesday we had a constant stream of official visitors...geneticists, social workers, counselors, child life specialists, and an assortment of doctors, you name it and they appeared.  It was completely a blur.  I don't recall much from the rest of that week and weekend.  We told the boys Wednesday night.  Using advice gleaned from the child life specialist, we broke the news as "gently" as we could.  Garren knew what the diagnosis was immediately before we even told him.  Kendan began to cry.  It was a night of pain and of broken hearts, shattered dreams.

Daddy about to insert her NG tube (see it to the right) while she's sleeping.

I spent the night composing the email that would inform our friends and family of the news.  I posted the announcement that Thursday morning.  My birthday.  February 27.  One I'd rather have skipped.  We were still in such shock by the news and the gravity of the situation that we really had not had time to digest it for ourselves but wanted to share because we had been rather distant that week from everyone.  It's odd but by telling people it made it so much more real that the distraught feeling came on stronger than ever again.  It was as if it was a literal black hole that we could not escape.





Distraught.

Foggy.

Exhausted.

Drained.

Angry.

Removed.

Words to describe our state of mind that week and the weekend.  Life would never be the same for us, for her, for the boys, for our family.  From what we were told, her death would be imminent.  How could that be?  She looked so perfect, so peaceful?  After 10 months of highs and lows, of emotional doctors visits, of thinking things are okay, I felt like I couldn't bear anymore.  I wanted to be by myself, not have to face the world, people.  I wanted no one to touch my daughter.  She was mine and I needed her as much as she needed me.  Her time was limited and I needed every second with her, touching her, smelling her.  I had a difficult (absolute understatement) time sharing her with even Jimmy and my parents and to be honest, I still do.  She was mine and I needed to be with her.  I carried her for 38 weeks, knew everything about her, I didn't want to play nice.  Most certainly didn't want to share her.  What if today was her last day?  Indeed, it was a very difficult period of time.

So, how does Medicaid/Social Security have anything to do with what I just wrote about?  Simply this:  our daughter was denied coverage for Social Security which would have given her Medicaid because we did not apply for it by the end of her birth month. That's right.  We were supposed to have had the wherewithal at that time of grief to apply for something we didn't know we'd need all before the end of February.  Do the math with me.  Birth on February 20, diagnosis on February 25 and there's only 28 days in the month.  The shortest month of the year.  So, let me get this straight?  We should have been already thinking about needing Medicaid to help cover medical bills for a baby we were told would not survive?  Never mind the fact that we didn't even know that by qualifying for Social Security, she would have automatically qualified for Medicaid.  Never mind the fact that with ALL the hospital staff that visited with us, we were never informed of this oh so small but important detail.

Is this a joke?

So, we're dealing with a life-altering, devastating diagnosis with our newborn daughter and now we have to contend with SSI and Medicaid bureaucracy, too?

Nope.  Not a joke.  This is our reality.

That is where we stand today.  Denied for Medicaid based on income and denied for Social Security because we loved our daughter more than we loved the need for money.  Oh, that's right, we didn't even know we were supposed to apply for SSI at that time.  Oh, and in case you were wondering, just because one might be 100% disabled, it does not mean they qualify for Medicaid like I naively thought.  Regardless, we are all just appalled that there is no special consideration given the circumstances surrounding our daughter's birth.  We know that for a fact because Jimmy and my mom went in to appeal our denial and explain the situation.  Still the answer was an emphatic no.

And, unfortunately, we don't qualify for a write-off from the hospital for her NICU bills either. Zip. Nada.

We do have private insurance which covers a portion of each bill.  However, as is with most insurances, we are still responsible for our part.   And still responsible for the co-pays at each specialist visit.  Unfortunately, this is the cold hard truth of the situation.  There are bills, lots of them that continue to pack our mailbox, waiting for our attention.

C-Section

Hospice

Medicines

Machines

Specialists

Supplies

Testing

Therapy

The whole kit and caboodle!

We are continuing to focus on the here and now with Everly while in the background worrying about the financial stuff.  It's challenging.  It is a strain and with my unexpected loss of income as well, it is difficult.  I pray that God will sustain us and will provide for us as we care for His baby girl for as long as we are blessed to have her.

A very special shout out to my mom, Kathy, for her countless hours of research in an attempt to help us with this situation.  She worked all day and then would come home and research various waivers, laws, policies, etc.  She would work all day, come visit Everly across town and then go home and still research on our behalf.  She even took off from work to accompany Jimmy to the SSI office as well.  Thank you, mom, for all of your hard work and effort!

Patricia and Michael came to visit...brought lunch and dinner! Nice to meet you both!

We continue to look forward to comments, emails, mail and packages we get.  They are such day brighteners for us all!  We thank you for taking time to respond and reach out to us.  Some days are better than others.  Some days when we learn of our other Trisomy baby friends not doing well or their premature death, it strikes a very sensitive chord in us.  We feel sadness for those families and pray for their peace.  So, having those bits of sunshine is a blessing! 

Everly's address:

Everly Hopkins
3905 Tampa Rd.  #2696
Oldsmar, FL  34677

Thank you all for your continued support for our family and especially our precious sweet pea, Everly!  We love and appreciate each of you.  Please keep praying for her good health and continued growth! 

With love and appreciation,

Crystal

Reality Bites

Sweet sleepy baby

 
February 25, 2014. It was the day we were told of Everly's diagnosis. A day we will never forget. A day we were told that sooner rather than later we would lose the daughter we had grown to love the past nine months. The doctors tried to gently prepare us for this imminent death they were expecting. We wanted to take her home so she could be surrounded by the sounds of our household...noisy boys, barking dog, mom and dad's voices...rather than the incessant beeps in the NICU room. We signed on with hospice, in shock that there even was such a thing for babies. We briefly spoke of wishes for "after" and answered questions about our plans. We were being prepped for the probability of death.
 
But what we were never prepared for when we left the hospital was the possibility of living. No discussions were focused on the how to live with a medically fragile baby. No advice on how to handle the nuances of multiple machines and tanks. No tips on what to expect for development as she aged. No guidance was given for how to navigate this unchartered territory. What could we do and what couldn't we do. The hope of Everly being able to defy the odds was certainly our prayer but most certainly not in the minds of most of the medical community.
 
So, here we are 102 days later and our baby girl is thriving and so is our family. Every member of the family, including our furbaby, make tracks to see sweet pea the minute I wake her up. They seek her out even before the bathroom. Really. She is so incredibly loved by not only our family but our friends, extended family and by so many who haven't even met her but have just heard her story. We are so encouraged by the messages of hope and faith we receive. She may be little but she's making such a difference all around her! How proud we are of this tiny miracle!

Playtime for all three kiddos!

We are asked quite a bit "How is Everly doing?" and I post frequently on Facebook pictures of her happy and enjoying herself. I, thankfully, am able to answer that she's doing "well." And thankful we are. But we do not have our heads in the sand and we know that in a split second it could change. Even the "well" is relative to her condition and her specific physical ailments. I make this point so that we can avoid any confusion that her "well" doesn't change her diagnosis. Her therapy will not completely change her clenched hands or that she will be able to ditch the obnoxious NG tube and fully feed via a bottle. Hopefully, it will help, will lesson the tightness in her joint contractures in her hands but won't remove that characteristic of a Trisomy 18 baby. The feed therapy will help hopefully with non-nutritive sucking if successful and possibly any oral aversions when baby food can be introduced assuming she can swallow it. Her "well" means that her pulmonary hypertension is still being offset by the massive VSD (Ventricular Septal Defect=hole) in her heart; either of which without the other would have devastating effects on her body. As she ages, that balance is expected to change. Her "well" means that her numerous daily choking spells haven't increased and are being managed by her own alertness, strong gag reflex and oxygen "blow-bys" we give her. Her "well" means that her desats at night aren't resulting in her turning dusky or needing to be bagged again. Her "well" can be read in so many ways but for her and for us, it means that we are still able to enjoy the privilege of being her parents.

Little Everly getting a foot massage and listening to Papa tell her how pretty she is.

It really is a confusing dynamic...the probability of dying and the possibility of living. We want to put the first thought out of our minds when things are smooth and seemingly okay with her. However, the reality is that we must be prepared (can you be??) because her body is just not working the way a body needs to and at some point it will be too much. Maybe not this month, maybe not this year and maybe not in five years, but eventually. While that is true for all of us, we know that she will be called home sooner than should be expected for a child. But, again, in the meantime we are trying to live day to day with what we have at the moment. We are now thinking further out than we did before. We are now trying to make some plans the near future. We are doing what we can to have a normal (is this even possible?) life with our three children.


SOFT (Support Organization For Trisomy 18) just updated their book entitled "Care of the Infant and Child with Trisomy 18 and Trisomy 13" for 2014. It contains valuable information for parents of children with these conditions and is a great go-to source for us. As I read it a few days ago, I was struck by a few statistics. As one can surmise, I've done my fair share of reading on this subject over the past three months as most Trisomy parents do. However, a new piece of information was given that was new to me. Before I give that info, let me recap some numbers and facts regarding Trisomy 18 babies taken from the SOFT website. Feel free to visit trisomy.org for more information or the Trisomy Foundation. Trisomy 18 is a chromosomal disorder that occurs in 1 out of every 7,000 live births. Previously that number was 1 out of every 6,000 but more families are choosing to terminate upon hearing the diagnosis. With this diagnosis, babies are more likely to have a number of other birth defects and a shorter life span as well as profound physical and mental delays.Testing can be done in high risk pregnancies by using the Maternity 21 or Harmony screen which looks for the three Trisomy conditions (13, 18 & 21). I did take this test at 10 weeks and it was found to be negative. Ongoing treatment, support and care for babies with T18 is lifelong. 50% of babies with T18 will not survive to birth. Out of those that do, most pass between hours and a week after birth.Only 5-8% of babies with T18 will live to see their first birthday.90% of babies with T18 are born with Full Trisomy which means the extra chromosome is present on all the cells in their body. Those with partial or mosaic only have the extra chromosomes on some cells; therefore the prognosis varies (better typically) for them and their lifespan. Everly has Full Trisomy 18.The one number that was most shocking to me and was also new information is that there are only around 200 babies who are currently living past their first birthday in the United States currently. Wow! That just took my breath away. I know that Trisomy 18 is rare but certainly expected the number to be so much higher than that. I will continue to be thankful for each day we are blessed with and be joyful for that time.

Nana rocked baby girl to sleep.

As we are approaching 3 1/2 months with Everly, we are trying to see ahead as we walk the path of her living and not dying. There are no guarantees. There are no promises of tomorrow. For any of us. We only know that she is with us today and while we don't know what the future holds, we do know that living like she's dying isn't helpful to anyone, especially her. We will continue to plan for the future. Continue to look forward and upward for only God knows the plans He has for her. We are only her earthly parents and will do everything we can to give her the very best life possible, regardless of how abbreviated her stay.


"Trust in him at all times, you people; pour out your hearts to him, for God is our refuge." Psalm 62:8

Biggest brother getting some snuggles from sister while doing his reading.

Don't forget to check out her Facebook page for frequent quick updates and pictures at Love For Everly!
 
With love and appreciation,
 
Crystal