Off and Running

 Everly doing her school with Ms. Mary Ann practicing sitting up.

Well, today marks the 191st day of us being a family of five! Continuously counting our blessings, continuously being mindful of what is important. Our thankfulness is never far from our minds and is said aloud at every family prayer. We have made the most of every single day we have had thus far and plan to continue.

Much like everyone else in the country, we are getting geared up for a new school year. We will "begin" on Tuesday but we really school year-round and take breaks or go on field trips as we need to. However, the new curriculum (remember the excitement over the boxes this summer??) will be christened next week!

 Working on neck strength during tummy time.

Of course, this school year will be unlike any other and will come with its own challenges. The biggest being trying to balance everyone's needs simultaneously and getting everything done on a daily basis. But I've already figured it out, I'm happy to say. I can't. Just can't. I will not be able to take care of them each simultaneously and will not be able to check off each scribbled "to do" off my list by dusk each day. So, the way I see it is that if I already know these things, then anything above and beyond said expectations makes me a winner.

 

Sweet love

In all seriousness, though, I do have a plan. As my boys are well aware of one of my favorite phrases, "If you fail to plan, you plan to fail." I LOVE that saying. A LOT. While my plan may have "escape routes" written in, having a general idea of the path is all that matters right now. Many people have asked me the specifics of how I homeschool a now 3rd grader and a now 10th grader with Everly and all her needs. So, I'll lay it out for you as best I can...allowing for the occasional off day thrown in here or there.

• Outsourcing: Co-op classes for both boys, 2 online academy classes for Garren, the rest with me
• Planning: My favorite motto is "If you fail to plan, you plan to fail."
• My dad: He's the key to it all. He transports, supervises, plays with, you name and he does it!
• Flexibility: So, with our new sister in the mix, we've learned that school can happen anytime and anywhere.

 

Kendan's first time carrying baby sister! He was so excited!

I have learned that I can school from the floor while letting Everly have some tummy time or working on rolling over. I am able to read out spelling words while feeding the baby and massaging her feetsies. I can correct papers with a baby in my lap. The boys can work with little sister doing her own "school" in the office alongside them. It is possible to read literature with the boys while the baby is wrapped in the Moby wrap.

 

Big brother love

I think most importantly I've learned that our school isn't just about what we're learning in books. While it is valuable and we do certainly attend to that, I know that our focus should be so much more. We are actively working on creating a lifetime of memories, making bonds with each other and being present in the moment, no matter how crazy or chaotic it might be.

Book learning will always be, but what we have now may not.

With love and appreciation,

Crystal

Reality Bites

Sweet sleepy baby

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

Playtime for all three kiddos!

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

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

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


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

Nana rocked baby girl to sleep.

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


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

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

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

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

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