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