Smooth Sailing at 3 Months!

This one's for Ari! Sorry I haven't been posting any pics of me with baby...I'm usually taking the pictures! Thanks for the reminder to put myself in them, too, Ari.

Well, we just hit another milestone with little sister...3 months!  That's right...92 glorious, love-filled days with this precious miracle!  It is almost still unbelievable in a sense that I sit here typing this because as I know I've said many times already, there was no expectation that we would be loving on her all these days, weeks and months after she was born.  Being sent home from the NICU to offer "love and comfort at home" doesn't necessarily give you hope for an extended future.  However, I have trust in God's sovereign plan and though we don't know when He will call her back to her heavenly home, we remain grateful for each moment we are blessed with this baby girl.

Things are smooth sailing for us right now and we just couldn't be more content.  She continues to be in "good" health...gaining weight on a nice steady curve, keeping safe from yucky germs, and working hard to strengthen her muscle tone.  Our last cardiology appointment a couple of weeks ago showed no change in her heart or pulmonary hypertension.  This continues to be a blessing because the PH offsets the effects of the large VSD (hole in her heart).   Without either one, things would not be going as well.  She also saw Dr. Graham, our pediatrician, this week and got a good report from her as well.  Weight increase is overall sufficient for her needs and is growing longer as well...20 3/4 inches up from 17 inches at birth!  We'll head back in a month for another check up to both doctors.

Everly and her bodyguards...determined to provide and protect!

She also had a GI doctor appointment a couple of weeks ago to discuss her feeds and a possible GTube surgery.  We were very intent on doing the surgery based on all the pros that it would offer Everly.  However, when we met with our cardiologist, she gave us the downside.  As much as we would like to look at Everly and say that she looks like any other baby, the harsh reality is that she is not.  In relation to this procedure, it presents rather severe risks for a baby with Trisomy 18.  We were actually under the impression that it was a simple endoscopic procedure, overnight stay and then home.  Unfortunately, that does not appear to be the case with her.  It would require intubation which makes us nervous because it is entirely possible she would not be able to be extubated after surgery.  Second, the stay is closer to a week and certainly not overnight.  It would require a special cardio anesthesiologist and would be done in a separate area where higher risk procedures are done.  Not that the last reason is completely awful but it certainly raises concern for us.  All this to say, that we have at this point opted to hold off on the procedure and revisit it at a later time.  Since the NG tube was inserted about a month and a half ago, she's only pulled it out twice which isn't too bad the GI told us.  I wish we could snap our fingers and have the surgery done and over.  But we'll reexamine as she gets older or if we encounter problems with the NG tube.

Everly's at-home interventionist, Mary Ann, on the first day of sessions! Love her!

So, believe it or not, we are still in newborn clothes and diapers!  Boy, if I had known that, I would have stocked up on the newborn sizes months ago.  Since we've worn and reworn and then reworn again all her clothes, my mom just "sacrificed" and went shopping online for some fresh NB sized clothes.  I can't wait to get them because they are so incredibly cute!  As if she needs an outfit to make her cute, right??  However, there are some new dresses coming with new colors, new patterns, new designs.  Oh, so exciting!  AND, mom ordered the most adorable new swimsuit for Everly and is going to make her look even more scrumptious!  I'll be posting some of her new things as soon as I get them in my hands for sure!  Poor Everly may be have to give up physical therapy for a day to model outfits...haha!

So now for a few updates on the rest of the family...

Mommy's friend, Gwynn, came to visit and posed with Everly and next to the rag quilt she made for our sweet baby before she was born. She even brought a gorgeous monogrammed and embroidered onesie with matching ruffled bloomers!

The boys (and I) are so lucky to have some friends who have either invited them over for some playdates (or "hang outs" as my 15 year old insists I say instead) or have taken them on outings.  How fantastic is that?  Thankfully, the boys are well-behaved and respectful so hopefully that makes the extra company all the more pleasant.  It has been a relief to know the kiddos get some fun days out!  So, here's a shout out to our friends!!  Love you guys!

We as a family are still doing P90X3 every day; although Kendan and my dad get their exercise in the pool instead, poor guys.  It's tough but we are each getting stronger daily.  It is a perfect stress reliever and hopefully is setting a good model for the boys.  We actually really like the program and while we must modify the modifications, it's still worth it!  Hoping for some "after" pictures at some point, too!  I'll keep you posted.
Tomorrow we plan to make a big trip out to Ft. Desoto for some fishing and beach fun with my parents.  Mom and I plan to chill on the beach with sweet pea while the "men folk" take some kayaks out and fish in the freshwater.  While it will be a fair amount of planning and work to get there, it should prove to be a fun-filled day and worth the effort!  We are all looking forward to the day!

Oh, by the way, we are still adding and checking things off Everly's bucket list.  Fishing was one of them and while we went to a local fishing hole last Sunday evening, this will be her first official fishing excursion.  Her list is so numerous and continues to change as the days go by.  It's fun to see all the experiences, some big and some small that she gets to have.

Nany with her gifts she made for Everly and given to her during the visit.

Speaking of...this past week she was visited by her Nany from Kansas.  She had a good time being snuggled and talked to by her while she was with us.  Nany helped put her to sleep, bathed her and even changed her.  Everly's grandmother even made her a turtle and a Christmas tree both adorned in pink!  Thanks, Nany!

So, I must confess that I am breaking every "mom" rule in the book on a daily basis with Everly.  With five of us in the house on any given day, Everly's body rarely touches a flat surface except for therapy time.  Yes, she does nap in my arms a majority of the time.  She is so melancholy that she rarely fusses about anything.  She definitely does not like to be moved around more than a couple of times, though, and really dislikes being taken from the bathtub.  Other than that, she's as cool as a cucumber.

She also has taken a sincere interest in staring into our eyes and at our faces.  If you have never been stared at intently by a baby or it's been a while, it is certainly a special experience.  Our rule here is never to break her stare.  Smile back at her for as long as she keeps her gaze upon you.  She is studying every feature, every detail of your face.  She scans your eyes for the longest time before allowing her glance to flow over the remainder of your face.  When she hadn't seen Papa in a few days, she scanned him for a good while when she first saw him again.  And just today, we were blessed by a visit from my friend, Gwynn, who taught me how to sew all the essentials in her room.  When she cradled Everly, she spent a good 10 minutes studying her because it was a new face, new voice.  That baby is truly remarkable!

She began her work with Mary Ann, our neighbor and her Interventionist, last week!  Yeah!  It is so much fun for me to watch someone else work with Everly.  Mary Ann is working with Everly on much the same thing as the therapist is...developing upper body strength, opening her fingers, holding her head up, etc.  She is also great because I can ask her tons of questions (poor Mary Ann!!!) and due to her training and experience, she's got the answers!  Plus, she comes to our house so it's one less trip out we need to make a week.

That brings me to my final thought for today.  There is NOTHING incompatible with life about her or any other baby I know with T18.  She communicates with us, enjoys things, dislikes other things and is thriving in her environment.  She is a miracle and a blessing from God.  God did not make a mistake.  She was created exactly as He intended and how lucky are we that we get to raise her?  I know that the more awareness that is raised by babies who are LIVING with Trisomy 18, the better the future will be for other babies to come.  Please help us to share the fact that having this diagnosis, as life-threatening and life-limiting as it may be, is not reason to throw your hands up and give up on these sweet, precious children.  They are compatible with life, joy and happiness!  Please share her website and her Facebook page. 

I would like to extend my sympathy to the Adams family of Jacksonville, FL who lost their sweet Elizabeth Joy recently.  She was so loved and so well-cared for by her family.  Her presence will be missed but her memories remembered.  Enjoy your new home with Jesus, baby girl.

Everly's friend, Elisabeth Maxine (sorry for my incorrect spelling last time on her name) is growing and is now six weeks old!  Her family is grateful still be holding their baby girl and making the most of every minute with her.  Her brothers dote on her and spend quality time with her daily.  Continued prayers for her good health please.  She has a Caring Bridge site as well.

Our other friend, Melanie Rachel, is still in the hospital and is recovering from a serious surgery.  She is looking good and even had a smile on her cherub face the other day!  I know her mama was so touched when she finally got to hold her again!  Please continue to pray for Melanie's recovery.

We are blessed to be a part of a new Trisomy family via Facebook and have met many new baby friends.  Please keep these new friends in your prayers as well.

Okay, for my prayer warriors out there...our specific prayer requests right now are that Everly will continue to remain in good health and free from yucky germs that may cause her illness which would be serious for her.  Please pray that she does not aspirate on milk or saliva which could cause pneumonia...bad all around.  Thank you all!

Also, we really, truly and honestly love hearing from everyone.  If you have time and can leave a guestbook entry, a Facebook message, an email, a text, please do and thank you!  I might not be able to respond but it is so special for us (even the boys read them!) to have encouragement.  We read and read all the messages.  I have saved all emails I've received since before even her birth and go through them when I feel less than positive about our situation.  Please know how valuable your messages are to us!!

By the way, still working (or rather starting) on getting my thank you notes out.  I promise it'll get done!!!

I've attached some favorite recent photos and even a video where we captured Everly responding to her name!  She's so amazing this little girl!

Ephesians 5:20 

Giving thanks always and for everything to God the Father in the name of our Lord Jesus Christ,

With love and appreciation,

Crystal

Just the Facts

 Dr. Graham speaking sweetly to Everly who is all ears

It feels like so much--and it has--has changed in the past month. I thought I would take this journal entry to update everyone on where Everly is today.


1. STATS


62 days old 6 lbs 9 oz 19 inches long 50 ml of milk (with extra fortification) every 3 hrs around the clock


2. MEDICAL


GI: They are taking care of maintaining her feedings, extra calories and overall nutrition. Right now we are trying to help her become more "regular" so her tummy doesn't hurt. We are also waiting for the go ahead to have the G Tube placed in her abdomen for feeding in place of the NG tube (nasal tube). Not happy about the procedure just because it is a procedure but it is the best decision for her based on her GI and Pediatrician's recommendation and we agree. Many factors played a role in our decision to do it but a few of them include: reduced risk of milk getting into her lungs, reduction (hopefully) in her reflux which causes desat's and aspiration, increased ability to learn to oral feed with nasal tube removed. Those are only 3 reasons but tremendously important ones.


PEDIATRICIAN: We have a new one! We are thrilled to now be seeing one consistent doctor who adores Everly! I must give a shout out to her, Dr. Graham at Healthpoint Medical in Westchase, because she was literally an answer to a prayer. As of late, my prayers have been for clarity in decision making and discernment and compassion on the part of the doctors caring for Everly. And just like that, in a true moment of clarity, it occurred to me that I should contact Dr. Graham who I had met prenatally in January. At that time, I thought we were only dealing with Congenital Heart defects and she agreed to see her even still. But with our new diagnosis, I was not sure so I put a call to her office and within a couple of hours she (yes, the dr!!) actually called me personally. After explaining our situation, she told me that she had cared for babies up north with T18 prior and that she "would love to care for our Everly." Oh, what I would have given to record that statement! This past Monday was our first visit with her and our sweet pea received her first head to toe full and complete newborn check up. She finally was able to receive her vaccinations as well as get lots (and I do mean lots) of questions answered. She was in no rush to move us along and allowed us ample time to ask questions and fully answered them. The best part (really!) was that at the end of the exam she gave me and Everly a collective hug and whispered in my ear that "she is glad to be on this journey with us." I'm not kidding! God really orchestrated this one perfectly because she was exactly what the doctor ordered (pun intended)!

 

Her 2nd month birthday dress and her Easter dress as they were the same day

CARDIO: Everly's last monthly Echo and EKG were both "good" according to the doctor. She is due for another repeat test of both May 12th. We are currently in prayer for either the doctor to open her mind and her heart in caring for Everly or for another cardio group who will. We invite you to be in prayer for this as well.


PULMONOLOGIST: Left the St. Joe's area for this one and headed across the Bay on a recommendation to see Dr. Kriesman at All Children's Hospital. Good call! Not too much at the moment that he can do for her, but he did recommend a sleep study for her to determine if she has central apnea alone or obstructive apnea in addition. We would also learn if she's holding CO2 in as well (remember that time I picked her up limp shortly after we got home...we suspect that to be the culprit). So, we'll see about this study.

 

Nana with her little baby girl

THERAPY: The best part of the week! Everly began speech therapy (aka feed therapy in babies) last week at All Children's Outpatient in Palm Harbor. Love, love! Ms. Kay is our therapist and works so well with Everly. We are just beginning so we have a bit of a road ahead of us but keep in mind that Everly doesn't take any milk by mouth yet. She only has taken literally a few drops over the past couple of weeks. The reason it's important for us to do this is so that when the time comes to introduce any baby food, she will have already experienced the sensation of swallowing "food" and the varying tastes, temperatures and textures to some extent. Without that, introducing anything else will be more challenging. At the same complex, Everly also received a physical therapy evaluation last week. However, she did so well that the evaluation turned into an impromptu therapy session. Go girl! That was so fun to watch! I wish the family could have been there because I learned so much during that hour. So, she will now be receiving speech therapy twice a week for 1/2 hour and physical therapy once a week for an hour. Those will be fun appointments!

 

It's hard work being that cute!

In addition, we were notified yesterday that we have been assigned an Interventionist Therapist to work with Everly. As it turns out, she lives in our neighborhood and is a pediatric RN. The best part of the whole thing is that she's been following Everly's updates and progress and praying for her already prior to her being "assigned" Everly as a patient. God knows what He's doing, doesn't he?


ODDS & ENDS: We continue to be advised by each of her doctors to keep her from enclosed places or large close gatherings. As hard as that continues to be, we do so knowing it's in the best interest of Everly. A simple cold her for her can turn serious quickly. Everly herself is so much fun to be with everyday. She has the cutest facial expressions and while she can't speak, her face can!She has a pretty consistent daily routine that I can tell she recognizes. Ala (our dog) continues to help me mother Everly even killing a bird and bringing it to the foot of the crib on day. Spent her 2nd birthday at Philipe Park in Safety Harbor with family. Celebrated with a cake and a gift. As for the rest of the family, I'll give you a bit of an update on us as well.


SPIRITUAL: The boys have been able to attend church on Sundays thanks to my parents coming by and picking them up. I am able to watch the same service live online from the safety of the house with the baby. I've also DVR'd a gazillion Joyce Meyers Ministry and Joel Osteen episodes so I catch one of those an evening or two a week while feeding Everly (takes 45 min every 3 hours).


PHYSICAL: Well, since our YMCA days are on hold, I knew we needed some movement. I have heard about the power of P90X for years now and decided it would probably be the best thing for us. So after a bit of research settled on P90X3 and figured we all could get something out of it. I knew it would be hard (only to find out after we started that hard is putting it mildly) but also knew there would be modification options on screen. We are now on Day 7 and we love it! It's such a great physical release not to mention a morale booster. Even Garren is excited and I no longer have to prod him to get dressed for a workout. We continue to do our nightly walks with sweet pea and our 2.2 mile hikes nearby but those don't count for our exercise really.


SOCIAL: The boys have both been fortunate to have opportunities most weeks to fellowship with friends both at our homeschool co-op and on outings. Garren even had his two closest friends spend the night recently for his birthday. I have also just begun feeling able to entertain the thought of getting together with friends (with Everly in tow, of course). Thankful for friends who have been patient with me over the past 8 weeks. It's been nice to get spend time away from the house, outside and with the boys and Everly AND with friends! It's a win-win all the way around. Feel free to get a hold of me if you'd like to get together :-) Jimmy isn't as social as the boys and I are so he's content to have free time at home while I'm out visiting with the kiddos. I guess it's a win-win for him, too. :-)


SCHOOL: All I can say is thank God I had all my lesson plans complete prior to giving birth! That has made everything SO much easier and I'm not sure we would be doing school had I not done that ahead of time. I planned out Garren's year last July and Kendan's shortly after that. Then spent the summer and last fall copying and filing lapbooks, papers and units for the school year. So, I'm glad to say that some progress has been made in the past 8 weeks. However, we will be spending this summer catching up on a few things. With all her appointments, the mere worry of time the first 4 weeks and just the lost momentum with mom/teacher busy some, it's expected that we would need a bit of make up time. Glad we had that freedom to spend unlimited time with her at the beginning when we thought we needed it right then!

 

A morning hike with the Edgar family

I think that about wraps up all the facts and details that I know have been updated and changed since the last time I wrote about them. Thank you for all continuing to follow her story and her journey. I can't wait to see where God takes her and I'm thrilled you are along for the ride!


Please continue to share her story, her FB page and her website. So many do not know of Trisomy 18 and it's important to educate. Why? So that eventually medical providers won't discriminate or withhold treatment just because a label has been stamped on their medical record. Not everyone fits in a mold and only God knows His plans for her, not even the best doctor can tell us that. So, how can you help? By sharing this page and sharing her FB page. Let the world...everyone...see the face of Trisomy 18 and let them see that these sweet babies can thrive. Help Everly get the care she needs by transforming the hearts of the medical community and enlightening those (me included at one point) who do not know about Trisomy 18.


Please also pray for Everly's two friends Melanie and Elizabeth. Melanie who also has Trisomy 18 will be having a procedure done this Friday. Elizabeth was born 2 1/2 weeks ago and has Trisomy 18. I haven't heard how she's doing this week but last week she was home and doing well.


With love and appreciation,

Crystal Hopkins

The Daily Grind

Sweet Pea turned six weeks this past Thursday and today marks her 44th day birthday.  What an accomplishment!  I could not be prouder of the strides she's making.

Afternoon stroll around the neighborhood. Her shirt says "World's Cutest Little Sister." How did they know??

When we first began this journey, we read all the literature, took note of all the statistics and mentally prepared for the worst right away.  It's easy to do.  The doctors and medical journals all make it seem that death is at the front door. However, all these days into it, I have realized that Everly hasn't read the literature, checked out the statistics and is not prepared for anything other than her next meal.

All this to say, that while her diagnosis will not change, our treatment plan for her can and will.  We are home under Hospice and will continue to be so as they are incredibly helpful.  However, we are taking Everly's lead and are seeking ways to help her overall as opposed to just a wait-and-see plan.

We have plans to visit a Speech Therapist in a couple of weeks who hopefully can help us teach her how to latch on for nursing.  Again it will be only for minutes but precious minutes nonetheless and I will take every last one.  In order to assist Everly with this and to help keep her feeding tube in place, we will visit her GI doctor this Monday to transition the tube to her nose.  I don't like this idea but would like to give her the opportunity to nurse and possibly take a tiny portion of her feeding via a bottle, though we fear that is very unlikely.  The upside:  to ensure the first placement is accurate, an x-ray will be taken and because of her small stature, we will get to see a current view of her lungs.  The other upside:  we will have this new and current x-ray to take to her pulmonologist on Friday.  Physical therapy hopefully will soon follow speech.  Our daily grind of twice weekly trips to varying doctors and specialists shall continue as we seek to help our daughter live comfortably and improve her life as much as we are able.

The most exciting news for the week for us has been her heart diagnosis.  No, there has not been an additional finding; rather, quite the opposite, in fact.  I called the R.N. who is our cardiologist's nurse and asked her to read me the official medical diagnosis in Everly's heart.  I knew the two major things but wanted to know the specific wording.  When she read the three things the doctor had noted, I noticed that she left off Double Outlet Right Ventricle.  I promptly asked her about it and she said that according the doctor's notes, once the PDA (Patent Ductus Arteriosus) closed after birth, it appeared Everly has more of a large VSD (Ventricular Septal Defect) alone than the Double Outlet in addition.  Say what??  Just in case you left your Merck Manual at home, the Double Outlet is much more complicated and is significantly more threatening to her heart's ability to function.  The nurse said we were told this in the hospital and it may have been the case but with all that was going on, it seems we missed this enormous piece of news.  Regardless, we were beside ourselves with joy at the new "old" news. 

Checking out her toy

Aside from the mostly medical updates and doctor visits that seem to flood our weekly running tablet, we have also been continuing to love our little girl and give her experiences.  For example, to check off bike ride from her baby bucket list, we went on a family bike ride last Sunday through the neighborhood and to the park.  It was a beautiful, warm spring day and perfect for such an outing.  While I won't lie and say it was the easiest jaunt we've ever taken, I will tell you it was the most memorable.  Yes, we did have to stop every few minutes it seemed to check her ever constantly beeping machine.  Yes, it took us nearly 45 minutes just to get from the house and to the driveway packed and ready to leave.  And, yes, it was a lot of work.  But, it was worth every ounce of preparation to have the experience with her.  If you have not guessed it by now, you must know that our family enjoys and participates in mostly outdoor activities.  So, to be able to take her along with her oxygen and all her machines on this special day outing, it was joyful for all of us.

In addition to that big trip, we purchased a jog stroller for her this week.  While we have a regular one, we needed one with all-terrain wheels so we can take her on our hike trail.  With the weather heating up, I have been concerned about continuing to put her in my sling when we go hiking.  Besides, laying her flat is best for her airway and her breathing.  She wasn't sure about the bumpity bumps mid-way through the hike but at the beginning and in the end, they didn't seem to disturb her.  Love getting her outdoors!

Hike using her new all-terrain stroller for the first time. So fun! Apr. 3, 2014

Since we have the new jog stroller, we decided to spend the day at the beach today and enjoy sunset together.  Again, the weather was perfect and fit for a beach outing...sunny and not one degree too hot.  Just perfect.  We did have to watch her very carefully today, though, as she continuously desated and we did need to give her 02 periodically.  Normally she is well-oxygenated when we are outdoors but today she seemed to struggle with it.  Thank goodness we are going to the cardiologist on Monday and will have a repeat echo (last one a month ago before we left NICU).  But overall the family did have a fantastic trip to the beach and enjoyed ending it with a coral pink Florida sunset.

As I end this journal entry, please remember to pray specifically for Everly to have a good report from the cardiologist on Monday and that her echo is clear.  Please also pray for comfort for her and for the discernment of the doctors treating her.  Please pray for peace and calmness to radiate during this tumultuous time for our family.

I also ask that you pray for Everly's new unborn friend with T18, Elisabeth Maxine Scholes, who is due at any moment.  She has a CaringBridge site as well under her name.

Please continue to share our website, her Facebook page Love For Everly (my friend, Courtney, who updates that has been out of town but we will have new pics and info again soon), and my FB page (Crystal Hopkins) where I tend to post my favorite daily pics now.
 

Indian Rocks Beach April 6, 2014 Family Beach Day

Doctors have no answers why these genetic conditions exist and there is no cure whatsoever for them.  Please help to spread awareness about this so little known condition so that more research can be done and the population in general educated. We didn't even know or had ever heard of T18.  You know what you find when you google T18, but help our family and the entire Trisomy 18 family know what the face of T18 truly is.  It's not a life filled with sadness and sorrow  but rather it's a life of pure love and joy.  That is what Everly gives us and we want everyone to know she's more than the medical journals say about her.  She is perfect!

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

Crystal

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

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!!!

Our sweet Everly Marie Hopkins

Dear Family and Friends,

We have been so blessed and touched by reading all of your supportive messages and comments this past week and longer.  The prayers, offers of help and just the overall love extended to our entire family have been a great source of comfort.

We will continue to need and appreciate that same outpouring of love as we embark on this next journey.  Our sweet daughter and granddaughter, Everly Marie Hopkins, has been diagnosed with a terminal genetic condition called Trisomy 18.  We are preparing to bring her home in the next few days so that we can offer her peace, comfort and boundless love. We do not know what day she will be called home to her Father but we do know that He is with us and will be with her.   We want to learn to appreciate every second of life and by coming home we can do that with her.

So many babies with T18 do not make it to birth and so for that fact alone we feel extremely blessed to have been able to not only meet her but to get to know her as well.  She changed our lives the minute we met her and we are so grateful for each kiss we give her sweet lips, every stroke of her soft hair and every sound she makes.

I know that many of you will want to know how to help and to be perfectly honest, I do not know the answer to that.  I can say that we will be spending every second of every day at home with her, learning more about her and making family memories. When the time comes, our family will most certainly need your love and support even more then.  I know all of you love her as well and for that, we thank you.  This experience has made us stronger people and we hope that everyone around us will appreciate life just a little more.

"Fear not for I am with you; be not dismayed, for I am your God.  I will strengthen you, yes, I will help you, I will uphold you with My righteous right hand."   Isaiah  41:10

With love and appreciation,

Crystal, Jimmy, Garren and Kendan Hopkins
Kathy and Garry Mullins