Touching Base

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

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

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

 Love. This. Girl.

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

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

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

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

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

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

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

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

Elisabeth Maxine Scholes

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

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

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

With love and appreciation,

Crystal

Happy Birthday, Everly!

Our family of five. Didn't occur to me until after the party to have the boys wear their "Bodyguard for my sister" t-shirt. Oh well, love the picture anyway!

Days after we found out the diagnosis for Everly, we decided we wanted to host a one month birthday party for her.  We knew that even at a week old, she was already defying all odds.  We wanted to celebrate her life and her strength and everything that she is.  So, with those plans in mind, we began mentally preparing for her one month party.

Fast forward to the week of her party...the days leading up to the party were tense due to her coming down with pneumonia and her collapsed lung.  We debated canceling the party for this reason but opted to ask her doctor and Hospice nurse their thoughts.  We were so looking forward to an opportunity to allow those who pray for her and our family and love us finally get to see her.  With the medical advice, it was determined guests should stay back a bit, wear a mask and avoid touching her.  So, masks in hand, the party was on!

The beautiful cake

The day of the party was gorgeous!  Sunny and bright.  My mom...thank you!!!...spent the day before single handedly gathering all the party supplies and ordering the cake.  With decorations in hand, the boys, my dad, my mom and my mom's friend began the arduous task of sprucing up the pavilion at the park.  My friends, Heather & Courtney, arrived early as well to set up and take pictures of the special day.

It was such a sweet day for our family to receive friends and introduce them to our sweet pea albeit under the guise of a hospital blue face mask.  We were thrilled and so elated to spend a little time saying hello and showing off our new baby.  We think she's the cutest thing to ever grace the planet, you know!

 

Preparing for friends to come see our precious baby girl!

Our pastor and his wife, Jerry and Jeanna, surprised us by bringing one of Grace Family Church's photographers to also take pictures of Everly's special day.  Pastor Jerry said a wonderful prayer for her and for the day before we cut into the cake.  They brought her a beautiful pink bible with touching messages inside.  Everly also received several handmade gifts including a quilt that I know took months to complete (thank you, Sandy), handmade adorned socks (thank you, Chris) and a hand sewn doll (thank you, Luwina).  She also received numerous cards with meaningful messages for her big day.  I even got a special surprise visitor who I had not seen for years!!  Love you, Shannon!

So many people took time out mid-week, mid-day to come say hello.  Some drove quite a distance to be there for the party and had an even longer return drive home with traffic.  Some left work early to join us.  I know due to distance, many were unable to join us physically but were with us in spirit and sent cards and touching messages in their absence.  We want you all to know just how much your presence (including those from afar) meant to all of us.

 

Sweet pea with her birthday dress! (Her headband was too big and kept slipping.) She's so adorable in her tutu!!

It was a special day.  Our daughter, Everly, was diagnosed with a rare genetic condition that for all intensive purposes is touted as being "incompatible with life" by mainstream medicine, literature and statistics.  But she, however, was and is here to show that while the medical professionals know so much, they do not know all.  They do not know His plan.  Only God knows what His plans for our daughter are and it is our job to love her and not question His plan.   As I type this, Everly Marie Hopkins is now 35 days old and just hit the 5 lb mark!  You read the statistics...50% pass in utero, half of the babies born alive do not live past one week, less than 10% do not make it to their first birthday.  I believe that she is fulfilling a plan so special that He picked her to carry it out.  While the selfish, human part of me wants to keep her, I know that she is called for something so much greater than what we can ever fathom.

"Can you fathom the mysteries of God? Can you probe the limits of the Almighty? Job 11:7

So, we will continue to love her everyday, get to know more about her personality and just spend those precious moments with her.  We are grateful everyday for her presence and for our gift because she is giving us so much more than we could ever hope to give her.  Happy birthday, sweet pea!

 

Most of the guests gathered for a group shot...some had gone, others were coming later and a few were with kiddos on the playground. Thanks to all who made it!

If you would like to find out more about Trisomy 18, please visit this site:  HERE

 Please continue to get the word out about this rare genetic condition.  The more we are living with the diagnosis, the more we realize how little we all know about it.  Knowledge is power and with that power we can help these babies and children.  There is no known cause or cure but it does not have to stay that way.

Please share her website and Everly's Facebook (Love For Everly) page with friends, family and anyone who might be interested in learning more.

With love and appreciation,

Crystal & the Hopkins family

The Scary Road

 Baby bucket list...go to church! Love GFC! Check!

So, we've just experienced for lack of a better term...hell.

Sunday began so beautifully and ended in misery.  We decided to take sweet pea to church so she could hear the worship music mama loves so much.  She slept soundly and probably had sweet dreams.  From there the afternoon led us to heading to my parent's house so she could experience that trip as well.  Made it home by 8:30 and began our nightly routine of bath and awake time with reading and music.

At about 11:00 pm, we began to hear some nasal congestion and by 2:00 am, it was exaggerate and she seemed uncomfortable in her kangaroo pouch.  So, we called our pediatrician on call and she recommended coming into the office first thing.  We continued to hold her and watch through the night as her breathing became more labored and she become more uncomfortable.  At about 5:30 a.m., I noticed that her eyes were rolled back and her face didn't look quite pink.  Her machines had been going off and on all night so it was very difficult to see when she was in actual distress.  However, this time I could tell something wasn't right.  I lifted her up and her head flopped to the side and her body was limp...completely limp.  Arms fell and legs fell.  I couldn't see her chest moving and her color was changing.  I tried stimulating her but it wasn't working this time.  Jimmy was already off to get the oxygen from the car while I was in the bedroom with her so he didn't see her lifeless body.  It was horrifying.  The seconds waiting for him to return.  I must have been screaming because minutes later both boys showed up in our room.  They both kissed her and then Jimmy ran in with the tank.  I asked the boys to leave and we began to work on Everly. Minutes seemed to be hours as we offered her oxygen and had to wait to see how she responded.  For what seemed like an eternity later, she let out a faint sound and her body shook.  Then she began slow, shallow breaths along with another faint sound.  We continued to leave the cannula on and both of us just sat and watched her for the next three hours until the clinic opened.

Daddy doing mouth care with sweet pea

Once we arrived, they x-rayed her chest and determined that she had pneumonia and one of the lobes in her right lung was collapsed making her breathing all but impossible.  The doctor visit wasn't as cut and dry as I'm about to tell you but for the sake of time and my heart, I will cut to the chase.  They prescribed an antibiotic and breathing treatments to help.  Before we left, they did try to "pop" her lung out by using the Ambu bag over her nose and mouth.  No sure way to tell if it worked but I know that it hurt and made her sore for days so for the pain I'm hoping it was efficient and helpful.

Once home, our Hospice nurse Mary came over to visit and spoke with us and based on the doctor's report and how Everly looked and was breathing, we weren't sure she could overcome such a serious illness.  Monday and Tuesday, suffice it to say, were spent in tears and spending lots of time holding, talking and loving on Everly.  We watched her like a hawk and she was literally never put down for about 72 hours.  She did not have any real awake periods during that time and was on continuous O2.  We read her books, prayed over her, sang to her and had private moments with her.  We just continued to love her over the two days as we had everyday before.

Brother reading his high school book to his little sis

Then Wednesday morning I decided that she needed new clothes on and needed to leave the couch that we had been stuck on for two days.  So, we made our way slowly with an oxygen tank and her monitors into her room.  Managed to clean her face, change her out of her sleeping gown and do some mouth care.  All of this must have aroused her enough to the point that she was awake for over an hour and a half after that!  She was breathing better and was looking around and alert.  God wasn't ready for her to come home yet after all!  We were so elated to see her looking so remarkable after the scary road we had been on for two days!

We continue to praise God for his care and for his faithfulness even in situations like ours when we don't understand.  It isn't easy.  But we are thankful for each and every day that we have with her and praise Him for those extra hours and days and weeks and now a month!   How blessed we are!

 Is that a nerf gun? Boys...she's a newborn! Nerf war...check!

Thank you to all who have continued to give us support.  Never before in our lives have we been in a position to need or accept such help, but it has been so comforting and helpful to our family.

At Nana & Papa's house...check!

 Please continue to share her website and the Love For Everly Facebook page with others.  Let's tell everyone that this rare genetic condition doesn't look like what you google.  We don't need to give up hope on these perfect children.  They deserve every bit of our attention just as other children do.  The medical community needs to know these babies have a future...no matter how long it is.  They are loved.

With love and appreciation,

Crystal

Perspective From Nana and Papa

Nana & Papa talking to sweet pea and Ala looking on for good measure

As we anxiously awaited the birth of Everly, we were very thankful to GOD that he had allowed Crystal to carry Everly to 38 weeks.  We knew and were prepared that Everly would be staying in the Nicu because of her size and her congenital heart defect.  We were not prepared for the diagnosis of Trisomy 18.  Although it was devastating news, I felt a calming peace knowing that this was and is GOD's plan for Everly.  I knew/know he loves her and will do his very best for her. Everly is in a "Win Win" situation.  Should GOD carry on his plan for Everly, she will sit on JESUS's knee as one of GOD's angels and should GOD answer all of our many prayers, she will be with her family and friends who dearly love her.

 Nana & her granddaughter having some snuggle time

We have been so blessed with family, friends, acquaintances, and people we don't know who have supported us on this journey.  I am so proud of Crystal,Jimmy, Garren, and Kendan who have unselfishly given all they have to ensure Everly has a wonderful life here on Earth for however long it is in GOD'splan.  Garren volunteered to learn how to operate Everly's feeding machine so he could share in feeding her.  This is a young man, typical teenager, and before Everly was born, who complained when he had to pick up his clothes in his room.  It is amazing the transformation that one little tiny girl, 4 lbs2 oz, can make on a teenager.  It is hard to wrestle her out of Garren's arms so the rest of the family gets a turn.  Before Everly was born, Kendan would cover his face when a commercial would advertise Barbies or girl's toys.  He would say he didn't want to see girls' toys.  And NOW, he holds Everly and reads"Princess" stories to her. Love conquers all!

I see GOD at work in so many ways since Everly was born.  Your comments, meals, donations,and "Love for Everly" has been very comforting.  I experienced another example of GOD's plan yesterday morning.  Everly has been using, since birth, petite oral swabs to moisten her mouth.  We call them lolly pops because they are moistened with Mama's milk and she sucks on them.  The NICU nurses at St Joseph's provided a small amount for us to take home for Everly, however, she is getting down to the last few and I have been trying to get her some.  The Hospice nurse said they don't carry this particular size for infants.  I called the company this morning and spoke to a gentleman who said they don' t sale the swabs to the public.  He asked me why I needed them and I explained about Everly. He then offered to send a BOX of samples free of charge.  I thanked him and he said not to thank himbut the power of above.  I told him that I was sure GOD directed him to me.
Everly smiling at her Nana


Thank you for your love and support,

Kathy & Garry Mullins

 Rockin' her feather headband!

The New Normal?

 Sweet pea's first hike. Check!

Well, Friday marked one week since Everly's discharge from the hospital and our return home. Monday marked the beginning of our first "real" week at home. Jimmy started back to work, the boys and I did some school and in between we all spent time holding, kissing and loving on sweet pea. Nana & Papa were over each day to help with toting Kendan to the park after school, doing laundry and just the extras we didn't seem to have time for anymore. Thank goodness for the meals that our friends and neighbors are bringing to us! In the midst of all our "new normal," we also threw in a few doctor appointments and some baby bucket list activities.

Speaking of baby bucket list...we've added a couple new items and crossed off a couple as well. To recap, here's what we have so far:

Go to beach check

Go on a hike check and check

Snuggle Kendan in his bed check

Snuggle Garren in his bed check

Watch a balloon check

Go to Nana & Papa's house...this weekend

Go for a bike ride

It looks like Everly has had a good number of items checked off the list in her first week home. Can't wait to see what awaits her next week!

 

Week Three Stats

Monday was our first pediatric appointment at the Complex Care Clinic across from St. Joseph's. For those of you who aren't familiar with it much like we were not, it is a pediatrician's office that specializes in patients with complex health issues. The great thing about it is that many other specialists are literally within the same area. It's one very large series of twists and turns each with another specialist at each corner. The plus is that you don't need to go from place to place for labs, appointments, etc. The take away from our first appointment was that he felt she may benefit from a "swallow study" at the GI doctor. Basically, that will determine if she can safely drink from a bottle and we can remove her og tube. I am thrilled at the mere thought of this! Our appointment is on Monday so I'll let you know if and when she can do the study.

This past Wednesday night will go down in the books as one of the scariest, most frightening nights we've ever had. Starting shortly after dinner around 5:45, Everly's machines began to alarm letting us know that she was de-sat'ing. Now for those of you who like me before three weeks ago knew nothing whatsoever about "de-sats" and such, let me help you. Everly is connected 24 hours a day (except bath time) to a pulse oximeter machine that measures the saturation of oxygen in your blood and her heart rate. Oxygen saturation is represented in percentages which range from 0 to 100% which is room air. The saturation is affected by the amount of inhaled oxygen so for babies with apnea, they sometimes "forget" to breathe and need stimulation and even extra oxygen to bring their numbers back up. When her numbers drop, it indicates that there is less oxygen in the lungs and a drop in the oxygen levels and thus a drop in saturation, hence the term "de-sat."

The scary part for us is that Everly, in addition to the apnea that many young babies have, also has a severe heart defect that will possibly lead to congestive heart failure if left untreated. She is not able to receive surgery for that now for one because of her small size and the risk that involves and for two her neurological development may hinder her ability to "wake back up" after surgery if and when she would be able to withstand it. Less than 10% of babies with Trisomy 18 have her specific defect (Double Outlet Right Ventricle) and is considered very serious and life threatening. How does this relate to what happened: simply this, if she goes into heart failure, no amount of stimulation and oxygen will help her. We were worried she was going into heart failure Wednesday night.

So, getting back to Wednesday nights episodes, there were moments when it was difficult to see if she was breathing at all. No chest rising and falling, eyes rolling back and the worst: the dusky color, the bluish purple coloring that happens when there's a lack of oxygen in the body. Between 5:45 and 8:30, Everly had 6 "de-sat" episodes which was a record number for her. In the hospital, we watched her have episode after episode but almost always separated by hours or days even (with the exception of one awful night in the hospital and she did have many episodes right in a row). But this night at home, her numbers plummeted and we worked for what seemed like forever to get her numbers back up time and time again. Watching your child turn blue and not respond to oxygen which we were giving her at that point...terrifying. Eventually, she did come around and her skin pinkened but the memory of that evening remains.

Through God's divine timing, our wonderful pediatric Hospice nurse Mary literally happened to knock on our door at 8:30 not because we called her but because she was on her way home and was dropping off a piece of equipment to us. Love. God's. Timing. He brought Mary to us at the time we needed her most. Let's just say that the significance of her name alone does not escape me. She not only brought a calming peace into the home but she was able to talk with us about the episodes and eventually put the nasal cannula back on Everly to ease her breathing. While we were giving her "blow by oxygen" which is essentially holding an oxygen mask slightly above the face, we hadn't thought to put the cannula back in with continuous flow yet. What a blessing she was and how grateful we were to Him for her timing! She stayed with us for about an hour and a half until Everly was stable again. She even followed up with us the next day AND contacted our Cardiologist and had them bump up her appointment from next Monday to Friday. We so appreciate her assistance and care.

Speaking of cardiologist...we did go early to see her cardiologist for an EKG on Friday and in a nutshell the report was that Everly is NOT in heart failure nor does she see ANY signs of it at this time. Praise God! I can't even begin to tell you the relief we had when hearing that report. She said everything looked good...her numbers, her breathing, and all the other "things" cardiologists look for in cardiac babies. She even gave us the go ahead to try the "swallow study" at the GI doctor, too.

One concern with a cardiac baby is the expenditure of calories used in just about anything from crying to swallowing which can burn lots of calories. She has a lot of weight to gain and due to her anatomy, it can take a bit to pack on the pounds. So, being able to allow her the chance to take in nutrition through bottle feeding is exciting. Who knew we'd be so excited about such a mundane and ordinary function? Perspective. It's all about perspective. (On a side note, I have tried to let her suckle but again due to the work, difficulty and the caloric burn nursing involves, sessions haven't been able to last but a minute or so each time. It's wonderful for me as a mama and never fails to bring tears when she can latch on if only for a few seconds.)

Snuggle time in biggest brother's bed...check!

Aside from the medical stuff which I shared so that you can understand more about what she is dealing with, we have had a wonderful week trying to find our groove or our "new normal" if there is one. We've enjoyed giving her nightly baths which she loves! Garren has stepped up to try to learn many of her needs and assist with those like her feedings. Kendan still loves to read to her and give her kisses. And, of course, Ala thinks Everly is hers and literally is right next to her at almost all times. I continue to kangaroo her at night for bedtime for the first few hours. Jimmy has piled the pillows in a vertical pile so as to ease the now-permanent crick in my neck. Jimmy continues to be the dedicated breastmilk/formula mixer for each feeding every 3 hours. Papa helps in whatever way he can as each day passes. And Nana mixes "washer woman" duties with those of a doting new grandmother holding Everly whenever she can.

Our daily life is not routine yet and I doubt it ever will be but it is comfortable and we are still so glad to be all home. Every trip out of the home takes a couple hours of planning, every task is coordinated and every duty cherished. We are so thankful to this sweet baby for showing us how valuable the little things are...the comfort of home, a nurse named Mary at our door, an attempt at bottle feeding and most importantly...every breathe we take. I leave you with this quote to kick start your week from our family to yours:

“What day is it?"It's today," squeaked Piglet.My favorite day," said Pooh.” ― A.A. Milne

As always, your prayers for Everly's continued good health are appreciated. We have another friend who is walking a similar walk whose daughter is named Melanie (Mama is Dana) that we would love for you to pray for as well. She came home from the hospital this past Wednesday.

 

Snuggle time with little brother...check!

Your comments here or on FB are always read, loved and printed! Please keep those coming and know that I LOVE to read what you have to share with us. Thank you for taking the time to do that!

Please continue to share Everly's story. Pass along her website and/or her Love For Everly FB page. Thanks!

With love and appreciation,

Crystal & Jimmy

You're Invited...

Everly Marie Hopkins...3 weeks old...our sweet pea!

You are cordially invited to attend Everly's One Month Birthday Celebration on March 20, 2014.  Come out for this "meet & greet" and birthday celebration all rolled into one!  All are welcome to celebrate our little miracle who continues to amaze.
Party will be held at Baybridge Park in Westchase from 3:00 p.m.- 5: 00 p.m.  10020 Bridgeton Dr.  Tampa, FL  We will be at Pavilion 2.  There's an open field and playground as well so bring any outdoor equipment if you'd like and maybe even a chair or two.  Cake will be served.  No gifts but cards welcome.

Everly's health can be very easily compromised so we will be keeping her close to mommy and daddy.  However, we would love to have all those illness-free take a peek at our miracle and pride and joy!  Thank you for helping us keep her as healthy as we can so she can keep fighting!  In addition, our whole family is looking forward to some time with friends.

We know many of you are quite a distance away or are not able to make it.  If that is the case, we would still love for you to send any birthday wishes Everly's way via her website or FB so we can print them out for her.  Your love and sentiments are always welcome!!

It would be great if you could post on our FB birthday invite page or on this page if you do plan to attend. Thanks!

Love,

Crystal, Jimmy, Garren & Kendan
Nana & Papa

Home Sweet Home

Home from the hospital...Friday (3/7). Just all watching America's Funniest Home Videos together.

Friday we made the slow journey home from the hospital. It was surreal and unnerving at the thought of bringing sweet pea home. We would be solely responsible for her care...her feeding pump, her og tube, her pulse ox machine, her heart monitor, her oxygen tank and most importantly the ambu bag in the likely event it's needed. Not typical newborn care as I recall. But none of this could deter us from the desire to bring our daughter home.

Through hospice we were to have a nurse with us 24 hours a day from Friday to Monday. So, when we arrived home, a nurse was waiting for us. We had already spent so much time training and were almost solely caring for Everly (our choice) in the hospital that at home we planned for it to be no different. So, it was a bit awkward to be home with a nurse essentially just watching us all day and all night. To be fair to them since they were there to do a job and for us needing private family time, we informed the nurses on Saturday that we would be fine alone. We officially could begin our lives as a family of five. We were as ready as we would ever be!

We quickly figured out that moving Everly around and even basic things like diaper changes would require a bit of planning and coordinating. Getting her from one room to the next requires octopus-like skills to hold her and a couple machines simultaneously. The first time we moved from the living room to her room, laughter quickly ensued at the sight. We've since streamlined the procedure and now we look less awkward moving from place to place. She eats via her feed pump every three hours around the clock which requires planning alone since the pump is electric. So going out is planned according to when she needs to eat. I pump every 2-3 hours around the clock as well so that timing also has to be taken into consideration when heading out. Suffice it to say that every outing is a well-planned out event!

First time outside in the sun...she pursed her lips and tightened her eyes and hands initially but just seem to bask in it!

When talking about our desire to bring Everly home, we began to talk about the things we desired for her to experience. So beginning Saturday, we started to check off things we dubbed "The Baby Bucket List." We keep adding things to this list and each member of the family has added items of their own that they'd like Everly to experience. Here's what's on the list thus far: 

* Walk around the neighborhood in the stroller Saturday...check!

* Feel the warmth of the sun Saturday...check!

* Go to the beach and hear the waves Sunday...check!

* Listen to and watch the boys have a nerf war Monday...check!

* From Kendan: Snuggle with her in his bed

* Visit Nana & Papa's house (instead of them coming to ours)

* Hike Lake Rogers (our favorite nearby hike trail)

* From Garren: Watch a movie with her in his bed

* From Daddy: Take her for a bike ride

* From Papa: Take her golfing

We'll continue to add to our list and check off as she experiences . For us, a bucket list has always been something to look forward to and to work towards. So, we are approaching the "Baby Bucket List" with the same zeal and excitement. We are showing this baby a lifetime of love now and if we are so blessed to be able to have more time with her than we can even imagine, she'll just be lucky enough to get a double dose!

 

At the beach with our sweet baby on 3/9/2014...17 days old. Beautiful day! Her heart rate was the lowest we've ever seen it...in the low 120s!!

Sunday we went to the beach and while crossing the sand, I noticed a mom with a toddler and dad sitting near us. While her child played next to her, this mom had a pile of papers pulled out and appeared to be doing work of some kind. As we left the beach, I saw the same family again at the play equipment but this time mom had a laptop opened at the picnic table consumed. It struck me in both instances that it could very well have been me just 18 days before...trying to multitask and more than likely shortchanging my boys so that I could just get one more thing done. Rarely was I anywhere without "something" to do lest there be 5 minutes of unaccounted for time.

Everly has already taught us to appreciate and not take time for granted in general. Every moment is precious and is a gift from God. None of us know when our last moment will be here on this earth. She has taught me in particular to be present...really present...with my children. I have enjoyed so many great conversations and had such positive interactions with the boys since the diagnosis. We all are looking at our lives through new lenses compliments of our sweet pea! No longer will I shortchange my children to get one more task accomplished at the expense of being fully present with them.

Ala is protective of her "baby"...when the visiting nurse tried to look in on Everly, Ala jumped up and planted herself between the nurse and Everly! As if by instinct, Ala is Everly's personal guard dog.

I encourage you to be present. I encourage you to be in the moment. I encourage you to not take anything for granted.

"Life is not measured by the number of breaths we take but by the moments that take our breath away."

Awake and alert after her first bath and baby massage. She loved getting her hair washed and combed.

Please continue to pray for Everly and for our family for continued good health and strength. Please continue to post your comments on our journal because they are sources of strength for us. Please continue to share her FB page and her website. We'd like for everyone to know that babies with T18 are beautiful, loved and living.

With love and appreciation,

Crystal

Family

The Hopkins family

Just wanted to take a moment to acknowledge our extended family who drove 24 hours one way last weekend to visit their niece, were able to stay for the day and then made the 24 hour return trip home.  I know Everly appreciated that you all...Billy, Lynn, Betty, Dave, and Jackson...made that extraordinary effort to come see her.  Thank you!

 

Aunt Betty and Uncle Dave with Sweet Pea

Aunt Wanita with Sweet Pea

Also wanted to thank Aunt Wanita for making the cross country trip from Washington to see Everly and to take the boys out for the day.  They truly appreciated the time you devoted to them!

 

Aunt Betty with Sweet Pea

 

Uncle Billy and Aunt Lynn

 Looking forward to seeing Aunt Verna and Nany in a few weeks, too!

With love and appreciation,

Crystal & Jimmy

Life in NICU

 

Every girl needs a little decoration, even in the hospital!

We are home!  Finally home!  However, with this new sense of "freedom" comes big responsibility.  Before I share with you in another update how life is at home, I'd like to show you life in the NICU for Everly's first 15 days.

Because we knew that she would be going into the NICU, we were able to take a tour and have the children take their NICU class so they could also come visit once Everly was born.  We all learned so much during our respective classes and tours.  As much as I thought I was prepared for the NICU, I quickly found that I was not.

 

A little girly decoration I pre-made to spruce up her temporary digs. Matches her big name banner in her room. Thank you Susan for all the die cut letters.

No one can prepare you for all the doctors who visit.  No one can prepare you for all the vital checks done around the clock.  No one can prepare you for all the lab work that must be done on your baby. No one can prepare you for the lack of sleep everyone will get...or not get as the case may be.  No one can prepare you for all the tubes, leads and monitors your child will be hooked to there.  No one can prepare you to see your child in such a vulnerable position.
 
Although the mechanics of being in NICU were scary and unfamiliar, we were blessed to have the best nursing staff around!  These ladies took care of Everly's needs, found better ways to make her comfortable and even helped us out as we lived there 24/7 for 15 days.  With one couch and a non-reclining chair, sleep and comfort  were miserably lacking but knowing she was receiving excellent care made it worth it.

 

Sweet pea's birth sign and weekly stats board we took to the hospital.

When our diagnosis changed during our stay, the nurses showed compassion and care towards us and even more so towards Everly.  Only 1 in 6,000 babies born are diagnosed with Trisomy 18.  We are lucky to have this sweet pea and even luckier to have been given teams of nurses who loved her, too!!  The nurses were amazed daily at how alert, aware and strong she continued to be.  Most of the nurses had had limited or no experience with babies like Everly.  But that didn't stop them from researching her condition and finding ways to make her comfortable.  What a testament to their dedication to nursing!

Almost before it was too late, we decided to photograph the nursing staff who cared and loved our sweet pea while in NICU.  So, if you're reading this and we missed your picture, please forgive us as we didn't think about it until days before our discharge.  On the flip side, if you appear in a picture and you would rather not be on our journal page, please let me know and I will remove it.  I will forever cherish the faces of those who walked with us on this journey the first two weeks of Everly's life.  Every nurse, every respiratory therapist, the doctors, the hospital support staff and even a security guard or two made a difference in our stay.

With love and appreciation,

Crystal & Jimmy

Dr. Mendoza...the doctor who broke the news to us and the most compassionate doctor I know! Love her! This picture was taken the night before we discharged...she was not even the attending doctor for us that night but wanted to come by and see us one last time. Spent 1/2 hour just hanging out with us!

Charge Nurse Felice...there are no words adequate enough to describe this woman...she was given to us from God above I know for sure. Love this woman!

Nurse Flo...stayed with us for a record 3 nights in a row. Loved her spirit and motivation!

Nurse Kristina...our night time Primary nurse. Love this lady! 

Nurse Kristy...had probably the toughest night with us...the night the Everly had to get a new IV, then umbilical catheter, then two PICC line attempts.

Nurse Melissa...smart and on it!

Nurse Elizabeth...sweet and caring!! An amazing woman of God!! 

Nurse Beth...didn't get an individual shot before her rotation ended...all around award winner! Helped in more ways than I can count!!!

Decisions, decisions, decisions

 No words needed.

Since finding Everly's diagnosis last Tuesday...the one we'll never forget..February 25, 2014...we've been inundated with meetings.

Not just a meeting here or there.  No. Meetings that last hours, repeat meetings, group meetings, phone conferences, you name it and we've had it.  Some we've requested, others we've needed and still others just seem to happen out of our control.

Our meetings really consisted of things that no parents of a newborn should be involved in...ever.  What kind of measures would you like for your daughter?  What is your definition of quality of life?  Do you know who you would like to call in the end?  All the questions have been asked in best interest of Everly but they sting, hurt and bite nonetheless.  You think you're doing "okay" for a brief moment and then someone reminds you that your daughter has a terminal diagnosis.  Then you're not okay anymore.

We've had the heaviest of decisions to make at a time when we aren't at our best.  So, we've gone a bit slower in making them so we can know that we've considered all the angles.  That has delayed our return home a bit but we believe it will best in the long run. My mom has also helped us to navigate this unknown and rocky road as well.  Having her sense of clarity has been most needed.

We always have the opportunity to change our minds and change routes but ultimately we are moving forward in the way we feel is best for Everly.  Not us.  It's not about us.  God has granted us this precious time with this sweet pea and we want to honor her life during this time.  For us, it means that we will let God decide when it's time for her to come home.  So making the decision and signing papers stating that we will not do any extraordinary measures to extend her life has been the most heart wrenching of all decisions we've made.  We have been told we can always change our mind.  But we knew from the beginning that how long she is with us isn't for us to decide and to extend her life to make us "happy" is not in her best interest.

 

Proud biggest brother!!

We want her home.  We want her to hear the sound of the boys shooting nerf darts.  We want her to hear Ala bark when she's excited.  We want her to feel the sun on her body.  We want to have family movie nights with her snuggled in with one of the boys.  We want to read her bedtime stories in our home.  We want her to see her room. We want her to hear the ocean waves.  We want her to hike with us.  We want her to smile and laugh when her brothers make goofy faces.  We want what any parent wants for their child.  We want her to experience our life as it is at home right where she should be.  That's our hope for her.
 
Those extraordinary life-saving measures would most likely end up with her up spending her days in the hospital.  Pokes, prods, beeps, painful procedures, life in a building.  That isn't the hope we have for her.  While all parents in similar situations have this decision to make, we made ours within minutes of the diagnosis.  We have not looked back on this decision and while it will be beyond any human level of pain, we know that when the time comes, we will know that she has had the best life possible!

As a parent of a child with Trisomy 18, the odds are stacked against her based on all medical research.  She's already defied the odds.  Today is her 14th day birthday!  The medical literature tells us that 50% of babies don't make it to birth and less than 10% make it to their 1st birthday.  Guess what?  Our hope is that she has the biggest first birthday bash ever!  While I know what the medical community says, I know my God is bigger.  Only He knows the plans he has for her.  Only He knows how her life will impact others.  So many in the medical community have a preconceived notion about the life expectancy of these sweet babies.  So many don't even have hope for them.  Unfortunately, I experienced it first hand a couple of days ago.  But I say in response, "For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future."  Jeremiah 29:11

I would like to ask all who are following to please share Everly's Facebook page "Love for Everly" and her website.  We are desperate to let others know that while babies with this diagnosis have a "bleak future" and one deemed "incompatible with life"...it isn't a life without hope...it isn't a life without joy and love...and it isn't a life without quality.  We know that the diagnosis will not change, we know what the odds are but we also know without a shadow of a doubt that we should "Trust in the Lord with all your heart and lean not on your own understanding; in all your ways submit to him, and he will make your paths straight."  Proverbs 3:5-6  While our road ahead is unfamiliar, we realize how incredibly blessed we are to have been given this sweet life to love and nurture.  We are humbled and honored to have been handpicked to be her parents and would not change places with anyone.

Thank you all for continuing to love us, love her, love our whole family.  Thank you all for continuing to lift us all up in prayer.  Thank you all for the meals that will be even more invaluable to us as we arrive home tomorrow.  Thank you for your support to provide the things that she will need.  Thank you for respecting our need for some family privacy and time together.

We will be okay.  We will make it through.  We will continue to lift up our Father's name and to give Him the glory.

"Now faith is confidence in what we hope for and assurance about what we do not see."  Hebrews 11:1

"As for God, his way is perfect: The LORD's word is flawless; he shields all who take refuge in him."  Psalm 18:30

With love and appreciation,

Crystal & Jimmy

What We'd Like You To Know...

We would like you to know where we are coming from and how we plan to approach the days ahead:

1.  There's nothing you can say to make it worse or better. 

We know it is difficult for our families and friends to know how to comfort us or what to say to us. Therefore, be relieved, and know that your presence, phone calls, and support are what we need, and just the fact that you show us you love us DOES make it better.  Know that we are excited about our baby and want you to be, too.  Feel good in expressing your joy at her presence.  Your messages on her journal, posts and shares of her Facebook page, and emails and texts keep us going.  Truly.  So please keep them coming. 

2.  We're praying for a miracle.  We're praying for more time.  We're just praying.

We pray that Everly continues to defy ALL odds as she has done up to this point.  We pray that she continues to prove the medical community wrong with their projected life span of babies with Trisomy 18.  We pray that we will continue to have day after day of the precious gift of time with our sweet pea.  We pray and encourage others to pray for God to equip us with the strength to handle the days ahead.  "Jesus looked at them and said, With man this is impossible, but with God all things are possible."  Matthew 19:26

3.  We are excited to be her parents and we think she's the most beautiful thing we've ever laid eyes on...ever!

We are thrilled to have a baby girl and the boys are beside themselves with joy to be big brothers.  We think that her adorable button nose looks like Garren's and her lips look like Kendan's.  We love the softness of her head of black hair...and I mean really love her head of black hair.  We can't take in her sweet scent enough times throughout the day. We love the shape of her long fingers, the lines on her tiny feet, the creases in her brow.  We love all of her.

4.  From Crystal...I am a very social person and love to talk and visit and LOVE my friends...but right now, I need some time and space. 

No, this isn't permanent.  No, this isn't avoidance.  I just am emotional, hormonal and overall dealing with a lot at the moment.  Some days are better than others and how I feel changes often.  Please know that at some point I will be able to reach out and connect again.  Please know that I'm not ignoring anyone.  Please know that I love you all.  Please know that I thank you for allowing me this time to figure things out in my own way. 

5.  How are the boys?

They are, as expected, saddened by the thought of their sister's shortened life span as we all are.  They will continue to benefit from their routine, talking and being with friends, opportunities for fun and laughter.  We are finding ways to laugh and put humor into our days, even in small bits. 

6. What can you do? 

First, you can pray for our family.  Second, you can share Everly's Facebook Page "Love for Everly" started by my dear friend, Courtney Netta.  You can also share her website with people.  Why?  Jimmy, myself, the boys and my parents find great solace in reading the messages, stories from other families in like situations and just the overall therapy of having a place to share.   We want people, lots of people, to know our daughter's name and to hear how she may have impacted you.

 

Funny pose we liked today. Her legs splayed out and her mouth wide open. She was knocked out!

Love for Everly

 and "LOVE FOR EVERLY" was born...

 

Everly's first outfit! So excited to get her dressed today!! And if you look closely, it's a little smile.

A sweet, dear friend of mine, Courtney Netta, began a page for our sweet pea on Facebook.  Many people have asked how to help and at a time when words can't express adequately sentiments, she thought this would be a great way to offer our friends and family a way to support Everly and our family during this time. 

Many expenses are coming our way right now (NICU, home health care, equipment, etc.) and she offered this as a way to help offset those as well as a place for people to learn about our special baby girl. 

If you are not on Facebook and would like to help, feel free to contact me directly at loveforeverly@earthlink.net.

Thank you!

With love and appreciation,

Crystal & Jimmy Hopkins