A Party Fit for a Princess

 

The birthday princess

It can safely be said that Everly's 6 month bash was a party fit for a princess! It was a perfect day in every sense.

We were so blessed to have so many hands on deck to make the party just right. I could not discuss the party without making mention of the special folks who did so much for it! Many thanks go out to those who just soared above and beyond for our sweet Everly. Here goes, in no particular order:

Gina & Lauren Deptula: overall party planning with me, floral arrangements, endless cutting, rolling and décor prep, running around getting supplies, you name it, they did it! (Check her out at Craftology 101 on FB)

 

Everly's beautiful dress, shoes, handmade socks, and tiara

Heather High: donating her time and talent to capture all our special moments at the party and all the editing after (Check her out at High Family Photography on FB)

Traci Heindorf: the adorable princess cake and meticulously handmade pea pod cupcakes (Let me know if you need a great cake or cupcakes for an event, I can give you her contact info.)

April Hetrick: tons of cookie favors individually decorated and wrapped

Kendra Drake: making tons of fruit wands and a special Princess Pea Pasta salad for the party

Sarah & Dan Edgar and kids: hours of set up and clean up combined

Melissa Perez and kids: hours of set up and clean up combined

Patricia & Michael Lesch: coming early and jumping right in to do whatever necessary for set up

Silly Little Girls: 1/2 birthday outfit and bloomers for sweet pea

Joanne Bishop: Thank you for Everly's surprise birthday outfit! What a perfect dress!

Kelly Adams & Christy/Bobby Barnes: for the huge sacrifice to make the long trip to Everly's birthday!

To all our guests: Thank you for making it a point to come to our daughter's party. We love you!

 

The food table.

To my parents: Thank you for pinch hitting whenever and however we need you on a constant basis. Our lives wouldn't be the same without you and our kids certainly wouldn't be who they are without you!

A big thank you to everyone who sent in a picture to make her Wall of Love!

Thank you all for your selfless devotion to making the day everything we hoped it would be for Everly!

Everly handled the party like a champ. She seemed to be fascinated with all the faces and people which didn't surprise us as she's never actually been anywhere with this many people at once. Mid-way through the party she was so tired that she quietly dozed off in her cushy throne. Sweet girl.

The room was literally transformed from blah to beautiful! Puffy lanterns were hung from the ceiling. Linen tablecloths with table runners and floral arrangements covered tables. Banners adorned the walls above the food and sweets tables. The dessert table covered in perfectly frosted cupcakes and a breathtaking princess cake. The Wall of Love full of pictures of families praying for Everly. The room was perfect.

 

Kelly Adams presenting us with the angel after the party

I was able to have some special time with Kelly Adams after the party that meant the world to me. Kelly made the trip from Jacksonville with two of her daughters to attend the party. What made this such a special meeting for me is that Kelly is Elizabeth Joy's mother, Everly's friend who went to be with Jesus on May 10 of this year. During our time visiting, she gave us a beautiful glass angel that has been passed to five other Trisomy babies, including Elizabeth, and now to Everly. What a special thing! She also brought with her and gave to Everly a one of a kind headband made for and called the Elizabeth Joy headband. It is made with the Trisomy Foundation colors and was worn proudly by Elizabeth Joy. It must have been such a moving decision to pass such a special item to our family that belonged to their daughter. Thank you, Kelly, for those truly special gifts. We treasure them!

 

Elizabeth Joy Adams 7/19/13 - 5/10/14 and Everly Marie Hopkins

We were so happy to see all the people who came out to celebrate such a big day in Everly's life. Such a blessing for us to celebrate 6 months with friends! It was such encouragement to hear everyone's thoughts and sentiments. To see everyone smiling and laughing and just loving on Everly was heartwarming. The love was plentiful in the room and for that we are so happy and thankful. It was a perfect day. Thanking God for the opportunity to love her for all this time!

I can't wait to invite everyone to her 1 year birthday party!! **Too many pictures to include with this entry so more will be added separately to the Photo section in the next day or so. Check back for those. Plus, we are working on trying to upload the video Jimmy made for the party here so you all can view it, too. I'll let you know when it's ready.**

With love and appreciation,

Crystal

We Did It!

Our AT Adventure

Well, we are home now. What a trip it was!

Packing for a trip with a 7 year old and a 15 year old is one thing, but packing for a medically fragile baby is a whole other story. I was so worried the week prior to leaving that I would forget something that we needed. I made several lists and had them in varying places around the house just in case I thought of something else.

The final report: nothing was left behind, forgotten or otherwise MIA. Yay!

Most of what was packed, though, wasn't even used fortunately. No, you didn't read that wrong. Most of the extras that were packed were medical/emergency/just in case items. And I am so pleased to report that it all stayed unopened.

In case you were wondering, here's a look at the pack list for her alone in no particular order:

3 large oxygen tanks

3 medium portable ones

mask

ambu bag

nebulizer & mask

Pulse oximeter, leads and sensor

meds: Diastat, Prilosec, Caffeine, Milk of Magnesia, Polyvisol, Albuterol, another seizure med, and Morphine

Tegaderm tape, white pad, medical scissors for retaping her tube

1 extra NG tube

15 feed bags

Food pump for night time feeds

2 flashlights for night feeds and pumpings and to check on her

countless 10 ml syringes for her milk

numerous 3 ml syringes for some meds

handful of 1 ml syringes for other meds

2 stethoscopes

bottle warmer

2 cans of formula for night feedings and calorie fortification

bottles for mixing and storing

thermos for hot water to heat milk away from home

jug of nursery water

jug of distilled water to clean feed bag in between feeds

Lysol spray

Lysol wipes

Travel thermos (2)

thermometer

nose sucker

brush

Lube for NG tube

Nasal spray

Infants' Tylenol

Suppository

Breastpumps: the battery one and the hospital-grade, flanges, wipes, sterile water for on the road cleaning,

Car refrigerator for meds that need to be kept at a certain temp and mama's milk

tape

Vaseline

qtips

nail clippers

2 playmats

toys

baby books

her bible

foam pad

therapy chair

toy bar (it comes apart)

blankets

sweater

jackets

sleepers

socks

summer outfits

cooler weather outfits

headbands

bathtub (foldable)

shampoo

body wash

wash cloths

baby towel

her lovey

diaper cloths

blankets

spoon

And I'm sure now I am forgetting some things but you get the point, right?

Our trip was truly magical, for us the happiest place on us. Sorry, Mickey, but you've got nothin' on the mountains!

The forecast was glum but it wouldn't shake our enthusiasm. Rain everyday. Yup. Everyday. 

My absolute favorite picture of the week and is number 2 of my all-time favorites of her face pictures!

But, boy, did God show up big!   

We had unbelievably beautiful weather all the way until our last day but we were packing up anyway!  Our week was packed with fun-filled days and plenty of outdoor experiences.  We spent a lot time enjoying the amenities at the villa this go around.  We are usually here in February when it is brutally cold and snowing (yes, by our choice!).  And while there's stuff to do, the boys found it to be a much more "full" trip in the summer.  We fished, rode in the paddleboats, played cornhole together, went for walks, roasted hot dogs, made s'mores and sat on the porch.  The boys played cards with Papa, went swimming, and worked on some projects at the activity center (hiking sticks, terrarium, sand art).  

Nana, Papa, and Everly down by the creek.

The rest of our activities was pretty much in the great outdoors.  We went on two college tours with Garren.  Then we stopped and found a rather large swift running creek to dip our toes in and it was a hit!  Everly enjoyed the scenery and was fascinated by the sounds.  It was quite fun to watch her study the trees.  We hit the AT or Appalachian Trail for a brief walk up Roan Mountain to Round Bald.  That was, for me, the reason for the entire trip.  For Everly to see a white blaze and to be on this special footpath.  And we did it! 

My best friend, Wendy, and her three girls came up for a visit one day.  What a special treat that was for all of us!  It's always nice to sit on the porch and have girl talk!

It turned out to be the trip we had all dreamed of for her.  We were so blessed and thankful to have this opportunity.  We will cherish every memory from it.
Okay, now some updates on Everly:  Her weight gain is slowing some as she's 10 lbs 2 oz right now.  She's doing something funny with her tongue where she swirls it and sticks it out.  It's actually quite funny to watch.  She's still just taking licks of baby food.  But she is enjoying her pacifier but isn't sucking it still, just playing with it.  She's had no illnesses or sickness and for that we are thankful.  She'll have her 6 month check up the week after next.

That brings us to the next point...she's turning 6 months old next week!  Her birthday party is Aug. 23 from 3-5 and we hope you can make it!  Please send me an email or text to let me know if you plan to attend so I can plan accordingly.  It is going to be a super special day with games and yummy food! 

Please keep my dear friend Dana and her family in your prayers as they've just now passed the one month mark since Melanie went home to Jesus.  Time does not heal wounds like this.  

Also, please keep Anissa's sweet girl Elisabeth Maxine in your prayers as she's had a few unsettling reports on her health as of late.  We want to lift her name up to our Heavenly Father.

  Here's my smiley princess!

Thank you for interceding on their behalf, friends!  If you will also pray that Everly's health remains event-free, no germs cause illness and that she remains safe during her party.  

I'm tired tonight so I will sign off now.  Hopefully next post will be more meaty and specific!  But better something than nothing at all, right? 
 
With love and appreciation,

Crystal

 Papa and Everly taking a nap. So sweet!

Hurricane Season

June 1 begins hurricane season in Florida. It lasts through November of each year. If you live in Florida, you know these dates possibly better than anniversary dates. I want to share with you a hurricane that is happening.


Yesterday and today I was overcome by God's grace and mercy for Everly and for our family. To honor Him and proclaim His glory, I must share how He has showered us with His love.


Yes, during our storm, during this difficult time, He has shown Himself and His love for His children in abundance.


See, God never says that we won't have times of trials, in fact, He tells us in John 16:33 "I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world."


However, how we deal with it is the part we should focus on in our lives.


Don't get me wrong. I struggle with this just as much as the next person. I am human.


But God already knows this. He created me. You. Us.


He knows we can't...


CANNOT


...handle the troubles of the world without Him.


He is our rock.


Psalm 18:2 reminds us that "The LORD is my rock, my fortress and my deliverer; my God is my rock, in whom I take refuge, my shield and the horn of my salvation, my stronghold."


We must believe that and run to Him when our world feels like it's coming apart. When the weight of life feels like it's too much to bear. When our troubles overwhelm us. When there is no light at the end of the tunnel.


When our daughter is limp and blue.


Yes, friends, we must go to Him in this time. We must praise Him. And, I pray that for you, in the calm of your life AND in your storms, want nothing more than to praise Him and shout His name. He is good all the time. We will not understand His ways because His ways are not our ways. We've read this popular verse in Proverbs 3:5...but stop and meditate on the words for a minute: "Trust in the LORD with all your heart and lean not on your own understanding."


He doesn't want us to "get" it. He doesn't want us to "know" why. He wants us to trust Him. That's it. Trust Him. Walk in faith that He knows our every need. His promises are real.


I want to share with you how He provided for our needs during our hurricane that still rages. So, let's begin...


Yesterday, Everly had her four month check up with our beloved Dr. Graham and her wonderful nurse Loraine. Towards the end of the exam, we all noticed that Everly's coloring wasn't right and she was very cold. Being that the room was cold and she wasn't yet dressed from her exam, we attributed it to that. We got a reading on the pulse ox and it was grossly scattered....70's to mid-90's in seconds. Once she somewhat pinkened up, we headed home to feed her and snuggle. Even as we left, we thought her color was off but figured it would come back soon.


Immediately upon entering our house, a mere 5 minutes from the doctor's office, she and I sat in the rocking chair to prepare for her feeding. She was wrapped snug in a blanket and I could see her color was still not going back to normal. In fact, her color was beginning to take on a dusky hue, the scariest of all colors on human skin. Her legs and feet were cold, her head was cold and her eyes were semi-closed. I began to call out to Jimmy that we needed to take her back to Dr. Graham's office. By this time, it was 5:25 and I was sure the office was closed but praying someone was still there. We stumbled to the car, pulse ox cords and oxygen tank in tow, carrying, by this time, a limp little baby t the car. I was trying to keep oxygen on her, hold her and talk to her all at once. She was not aware of me or her surroundings. She didn't move nor cry. Her lips had turned white and her face and skin a nasty sick color. She did not look like my sweet baby Everly. I remembered telling Jimmy that we were losing her. I remembered crying out in panic that he had to hurry because she was leaving us.


What seems like an eternity later, but in reality I know that it wasn't, we made it to the stop light minutes from our house. As we waited to turn, I thought about her in those moments and had to remember who was in control. God has his hand on Everly. God will care for her...whether it is to bring her home to Him or whether it is to keep her in her earthly body a while longer. But either way, I must walk in faith. So, my panic turned to calm. My hysteria changed to quiet. I began to pray over her. Tell her each family member's name and how they love her. Tell her how much her Heavenly Father cares for her more than we could ever. I wanted to trust in Him and I did.


Let's push the pause button here. I did say earlier that I am human. So, I want to point out that while I was handling it in the car when we arrived at the pediatrician's office, the reality of the situation hit me again. Yes, I did cry and yes, I temporarily went into panic mode. I'm not going to lie. However, through God's grace and mercy, He placed the right people in place at the right time for two reasons. Now push play.


As we pulled into the parking at Dr. Graham's office, I knew there was a very good possibility there were gone. It was 5:30 after all. Yes, no surprise, the door was locked. However, the receptionist saw us at the door and called for help, I guess, because as she opened the door Dr. Graham, Loraine and LeeAnn all came rushing through the hall to meet us. Dr. Graham calmly took my shoulders and walked us to an exam room, all the while speaking calmly that it would be okay. She took Everly who was still very disoriented and layed her on the exam table and proceeded to check her out.


She told us that it sounded like she had had a seizure. In my naiveté, I thought that a seizure was when a person started shaking uncontrollably and vomiting. This is not at all what Everly did. So, it was a complete shock when she told us that. As I have since found out, there are 40 different kinds of seizures.


After some time, Everly's color returned and they checked all her vitals which were good. I'd like to mention here that Dr. Graham had a patient she was seeing and very kindly told them that she would call them later. If you were that patient and reading this, thank you for understanding. When she seemed stable, Dr. Graham asked if we felt comfortable heading home with Everly. We did as it seemed she was out of the seizure.


I hugged each of our angels and expressed our thanks...really words were inadequate. Then Dr. Graham said the following: "I'm not on call tonight but I will tell the service that if you call, they are to call me at home."


Yes, that is what she said.


No joke. I know what a big deal that is. She was NOT on call. NOT her responsibility. I love that woman!


The overwhelming feeling I had knowing that God orchestrated this brought me to tears. Not of fright but of pure joy and love for Him.


As we drove home, Everly started sticking her tongue in and out very rhythmically. She was turning her head side to side, not focusing on me, looking this way and that. The tongue thrusting continued. Feeling uneasy and uncomfortable, I videotaped 15 sec of this and sent it to Mary Ann, Everly's therapist, who lives on the street behind us, to ask her what she thought.


Yes, the street behind us. Mary Ann simply texted back, "Want me to come over?' Again, tears of joy that God has interceded and placed the right person in the right place for Everly and for us. Within minutes, this angel arrived at our door. She knows Everly and knows her behavior and she agreed that it was not normal for her. She told me that it was another seizure. Yet a different one from her earlier one. Again, I was surprised to hear this. Mary Ann stayed a long time talking to me, watching over Everly and just being a calming presence and such a blessing.


I called the answering service and they told me that Dr. Graham had instructed them to call her. She promptly called back and determined that yes, Everly was seizing again. We went over the options at that point and decided to ride it out at home with the plan that she would call a neurologist in the morning.

 Getting some snuggles while I went to the restroom. She knew it, too!

My mom came over about then after having worked all day and drove an hour over to stay with us for the night. My dad was already here and stayed, too. They were such a help with the boys as Jimmy and I stayed with Everly who was still having the seizure. They acted as second parents to the boys while we brought Everly into the bedroom for peace and quiet to try to calm her for the night.

 

Now it's Papa's turn for snuggles.

 
As for the rest of our night, it was rather up and down. Everly had periods of drifting sleep and had periods of tongue thrusting. She was awake for some periods just looking around but more of a blank glaze really. She had several very dry, very pasty bm diapers that didn't look right. Her mouth seemed extremely dry and her behavior was uncomfortably odd. This continued throughout the night until about 5 a.m. when she finally hit a restful sleep period.


As I was feeding her during her 8 a.m. feed, Dr. Graham's office called and told us that they were able to get us into a neurologist for the next day (Thursday). I know from my experience in making doctor appointments, quick ones with a specialist are far and few between.


Then another shocker for me...Dr. Graham called to see how Everly did during the night and how things were right then. Since we didn't have an appointment with neuro until the next day, I didn't think we'd see a doctor to go over anything until then. So, what a blessing to have our trusted angel call us! We went over plans for the day of how to best care for Everly at home as she knows that is very important for us. She instructed us to rehydrate her with Pedialyte at specific intervals, allow her to rest as needed since the ongoing seizure probably wore her out.


We were able to get an emergency prescription from hospice for a medicine that can be used to stop a seizure in its tracks to keep on hand. Having it available and knowing we wouldn't have to go to an ER is a huge blessing and relief. I know I have help for her when and if it is needed.


At lunch and at dinner, Dr. Graham called back to see how she was doing. For real. I love her. I honestly love her. She was sent to us by a God that loves and cares for us. She is what we needed. He knew this. He is so good. No, she can't fix the problem per say but she gave us everything we needed.


Remember back in January when our old pediatrician dropped us because of the complexity of what we thought then was Everly's heart condition? Well, God knows what He is doing. So, that "closed door" then turned out to be closed so He could open another one that was better for us and He knew it. I wouldn't have switched unless I had to. He made it so.


When God couldn't show up anymore than He already has, this happened.


Late Wednesday afternoon, I received a phone call from a friend I hadn't spoken to or run into in a long time. I love catching up with old friends and so it was nice to see her name pop up. When I answered, I could tell she didn't know about Everly's current medical issue. She said she doesn't do Facebook which is why as I had posted updates throughout the two days. She immediately started to fill me in on seizures and what else I could do for Everly.


Then, she simply asked if I would like for her to stop by after work and check her out.


Did I mention she's a doctor?


Yup. A doctor. A walking, breathing, practicing doctor of medicine. An M.D.


So, a little after 6:30 p.m. Dr. Pilar Cekan, my angel friend and sister-in-Christ, showed up at my house, stethoscope in hand. It was like straight out of modern day Little House on the Prairie with an old fashioned house call. First, it was just wonderful to see her again. Her spirit and love of Christ precedes her so it's always a pleasure to run into her. But this visit was even more special. She came because she loves. She cares. She came because she's a daughter of a God who prompted her to call and she listened to that prompting.


She, just like our Dr. Graham, looked at Everly lovingly and cradled her in her arms. She held her as if she were hers and I knew that we were so loved by both of these terrific doctors. Pilar gave our sweet baby an exam and said she sounded good and talked some medical stuff. Thank you, God! Then she we spoke about the fact that she even called today and we both shared some tears of joy of God's goodness.


And He is, isn't He?


Guys, we are ALL going to go through these storms.


To put it in terms my Floridian friends will relate to, some are more Category 1 while others will be more Category 5. Either way, they can do damage if we let it. If we don't put our boards over the windows. If we don't pile up sandbags. If we don't prepare in advance. Damage will devastate us.


We have what we need in Him. He will protect us from every storm. He will cover and shield us. We must just trust in His plan. Even when it's a Category 5 storm.


We must walk by faith that His goodness is all we need.


We must walk by faith that His promises are real.


We must walk by faith that He will rescue us from the hurricane if we trust in Him.


I trust in Him. Do you?




With love and appreciation,


Crystal"We are pressed on every side by troubles, but we are not crushed and broken. We are perplexed, but we don't give up and quit. That is why we never give up. Though our bodies are dying, our spirits are being renewed every day. For our present troubles are quite small and won't last very long. Yet they produce for us an immeasurably great glory that will last forever!" Matthew 11:28-30




http://www.gofundme.com/LoveForEverly (FYI: Tributes made on Caring Bridge do not go to Everly.)


http://facebook.com/everlyhopkins (Check here for more frequent pictures and updates on Everly.)


We thank you each for your intercessory prayer on our behalf. God hears you and God honors you. We know that your prayers are working and we love you!

Pilar checking little sweet pea's lungs

Dear Dr. Cekan and our sweet Everly...You are a blessing!

Checking baby's vitals

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

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!