Here is my heart. Her name is Charlotte.
Monday, April 30, 2012
Saturday, April 28, 2012
There are so many blessings that Patrick and I find in the day when CHARLOTTE left this earth. For starters, we were together for the first time in almost a month. You see, we'd perfected 'crossing in the night' as I called it. Daddy was either working or with Charlotte or Patrick while I was always with the other baby. It wasn't until that fateful Wednesday which we were actually together with Charlotte at the hospital. Blessing number one. Number 2, was that our Sweet Charlotte drew her last breath with us by her side. And as much of a rug-pulled-out-from-under-you type of situation that her exit was, we are comforted knowing that she was healthy. She was ready to go home. We weren't busy chasing her life down like we had on so many other days. Rather, she was perfectly poised, coiffed and ready to leave, with her "healthy" heart. It's just a different homecoming than we had imagined. This third reason gives us peace most of all - the fact that her heart just stopped after having given no warning. In reviewing her vitals from the day, it showed not one single stitch of anything amiss. Nada. Zilch. Zero. It was as if God simply declared it as being "time." And that's just what He did. No warning but just about 4 to 5 seconds from when her heart was beating to when it stopped.
It was only a couple of days later that I realized that she had drawn her last breath with her Daddy and I by her side. Granted, she left this earth hearing her Mommy "calling" for help but I think that only added to her peace, as she had grown accustomed to my "encouraging" over her short life.
Naturally, the medical team afforded Charlotte with every opportunity as they hurriedly executed every. last. detail. of her life-saving efforts. It was like an orchestra performing - hitting every note just perfectly - and yet, it was God's orchestration that they were following. With every effort, though, (medicines, chest compressions and the final attempt at saving Charlotte, ECMO) the door was always closed. It was not in His plan. So later when I asked what time did she leave this earth, it was answered "officially" at 7:03 pm, although we all knew she died an hour before.
I will never forget the compassion shown that night to my daughter...to me...to my husband. We had never actually gotten to hold our sweet and precious baby without her being hooked up to some IV line, sensor, tube or cuff. And as bittersweet as it was, we finally had the opportunity that night thanks to the heart of Dr. Mendeloff. An effort not many would have gone as far to do. He has always been at the top of our list for being Dr. Wonderful, so this only further solidifies his title. Additionally, the team of individuals at Medical City who we'd grown to know and love, offered such support. Through their presence to their words, hugs and tears of love for Charlotte to their unmatched talent. Everyone should be as blessed with a group like this in their corner.
I'm sure that with time I will learn how to mesh my two worlds into one and learn to be my happy, naturally caffeinated self while still missing my Charlotte. And I imagine that not a day will pass on this side of heaven when I won't think about her. She has touched the lives of many, but mainly mine. I'm not sure exactly how I'll honor her justly but I hope that she is proud because simply put, she is something AMAZING.
Posted by Patrick and Sarah at 8:03 AM
Friday, April 27, 2012
It goes without saying that we were all dancing on air when our sweet family of four finally got to meet not long ago. Although brief, it was amazing. Our family was together. Little P was singing and dancing, Mommy and Daddy were being, well, Mommy and Daddy...and Sweet Charlotte was just being a perfect baby, soaking it all in. Take a look at who was carefree and loving life, but who could blame him? This moment is permanently stored in my bank of life's greatest moments, right behind marrying my husband and meeting my children when they were born. Thank God for answered prayers.
Posted by Patrick and Sarah at 12:36 PM
Thursday, April 26, 2012
I am officially a cookie lover. Thanks to my MIL's hard work, I am also a cookie making machine. In parts, we made cookies for our sweet staff at Medical City's CHSU (Congenital Heart Surgical Unit)...in preparation for Charlotte's homecoming. We still gifted the unit with our thanks for loving Sweet Charlotte, but this time, with my darling girl's monogram. If only...
The Lord is near to those who are broken-hearted and saves those who are crushed in spirit.
Posted by Patrick and Sarah at 7:17 PM
Wednesday, April 25, 2012
It's hard to answer when people ask how I'm doing. On one hand, my days are mostly spent playing with cars and trucks, reading books and making "cracker sandwiches." (If only Little P would eat more than crackers and air.) But on the other, I grieve the loss of our Sweet Charlotte. She is gone and now we stand here as the wind rushes by, and life begins to "settle down." But what if I don't want it to?
It's not up to us to decide. Just to follow. And trust. And I'm okay with that. Though I wish that my girl were here with us to experience all that is our life together. To hear big brother's screams of joy, take in the familiar smells that are our house, to hear the birds chirping and Bear barking...to have to squint from sunshine. I wanted her to taste life but I have to remember that she did. She felt the incredible love her of her parents, the compassion of her medical team, the peace of God's love as He cradled her. Although Charlotte experienced a lifetime of struggle, she lived a good life, always surrounded by His love and those who continue to carry her in our hearts.
Posted by Patrick and Sarah at 8:47 AM
Sunday, April 22, 2012
My best friends gifted us with "Charlotte's Tree" which is a continued source of my peace. She will always be with us but her tree is a living reminder of her incredible spirit. It's a crape myrtle and will bloom in pink. And, oddly, a little birdie has claimed it as its own. It sings and sings and sings every morning. I would like to think that it's my SWEET CHARLOTTE singing her song. She didn't get her voice from her mother though...that's for sure.
Posted by Patrick and Sarah at 2:52 PM
Saturday, April 21, 2012
When I heard from Michelle Duyck, Chloe's mother, I was touched by the generosity of those of you who have donated to the Chloe Duyck Fund in honor of our Sweet Charlotte. I can speak for Patrick and say that we are both honored to be a part of this because not only does it honor our Charlotte but it allows for good through research. Throughout Charlotte's journey, we heard countless times just how small our precious Charlotte was and, with each obstacle she overcame, it was SUCH a celebrated one due to her size, not to mention having a single ventricle. Please know that with the money you donate, it will go toward life-saving research to help babies like ours, but hopefully give them more of a chance at life.
If you are interested in making a donation in memory of CHARLOTTE ROSE, the following link will take you to www.hope4tinyhearts.com.
On this site, you'll find the Chloe Duyck Memorial Fund which is earmarked for research and awareness in the area of pediatric congenital heart defects and directly benefits the CHSU (Cardiac Heart Surgery Unit at Medical City Hospital.) When you donate, you'll have the opportunity to mark it "in memory of CHARLOTTE ROSE." And, to us, it's the best gift you could give us...and to our baby.
Posted by Patrick and Sarah at 7:52 PM
Thursday, April 19, 2012
Every hour of Charlotte's life lead to the words I wrote and read as we honored her on Monday at her mass. Here is my tribute to MY GIRL.
Charlotte's spirit embodied one of hope, and one of strength. I can count fewer people in my whole life who have left an impact which is as great as the one our Sweet Charlotte has. She was perfect...pure...true and it is with a heavy heart that I stand before you today in remembrance.
As a dear friend reminded me, "let us rest in knowing that He is without error"...despite the hurt that is left in my heart. However, I am granted comfort in knowing we will meet again one day in heaven.
With each surgery she endured, I would always part with Charlotte by reminding her of The One who loves her more than her mommy and daddy, even though mommy comes in at a VERY close second! And I was comforted knowing that despite not being with her during those surgeries, she was being held...and was safe.
Although a different life lived, she held court from her room. Think of all the lives she touched without ever having spoken a single word. My peace is that she was able to feel the warm sun against her skin and feel the breeze in her hair as she and I tasted the goodness of being outside one afternoon. It surely could have lasted longer, but the experience was humbling as I realized the true magnitude of the small things in life. And, as you will soon see when we lay her in her final resting spot, she will smile brightly underneath where the two oak trees kiss. She will feel the sun, bear the rain and soak in all that is God's creation. I can't think of anything better than knowing that my Sweet Charlotte's spirit will shine brighter than it ever has before.
She touched the lives of many, and many who didn't even know her. My life is better. Yours is better. I am humbled by her strength and honored to have mothered her. It is my true gift to have been graced by her presence. Little did I know what a great impact her life would bring to the world and to look out and see those of you who love her the way Patrick and I do, warms my own heart to a bursting point.
I continue to be overwhelmed by the prayerful support of our family and friends and even those who we don't know personally. It is not without suffering which we walk this journey, but through it, we see the goodness that is God through all of you. Your prayers have carried not only SWEET CHARLOTTE...but my family's and for that we are forever grateful...for she is my light...she is my love...and she will always be, my girl.
Posted by Patrick and Sarah at 1:11 PM
Saturday, April 14, 2012
In light of opening our hearts to Charlotte we want to think back to where things began. Many years ago there was a baby that began her life just as ours did. Her name was Chloe and since then her parents have been striving to help babies like ours. When we thought of what we could do to honor our daughter's memory, there was only one place our minds led us: the Congenital Heart Surgery Unit at Medical City Hospital for the compassion that they gave our CHARLOTTE ROSE.
If you are interested in making a donation in memory of CHARLOTTE ROSE, the following link will take you to an opportunity to support a charity which we have chosen with the help of the team of CHSU physicians. www.hope4tinyhearts.com
On this site, you'll find the Chloe Duyck Memorial Fund. It is a fund created by the Duycks after losing Chloe to HLHS. They partnered with the Cardiopulmonary Research Science and Technology Institute (CRSTI) to create a fund earmarked for research and awareness in the area of pediatric congenital heart defects. You'll have the opportunity to mark your donation "in memory of CHARLOTTE ROSE."
We continue to be comforted by the outpouring of love, support and prayers. We are thankful for CHARLOTTE. We are thankful for each of you.
Thursday, April 12, 2012
Since we titled Charlotte's blog "Heart of Hope," it's only fitting that I titled today's blog "HOPE." It's exactly what we had throughout Charlotte's journey. Our hope was for Sweet Charlotte Rose to heal and to live a full life, one without pain and suffering. But instead of having that here on earth, she will have that in heaven with The One who loves her more than her Daddy and I do, even though Mommy comes in at a VERY close second.
As always, thank you for your continued prayers.
Sunday 2-4 pm
7405 W Northwest Highway
Dallas, TX 75225
Monday 10 am
Mary Immaculate Catholic Church
2800 Valwood Parkway
Farmers Branch, TX 75234
Monday 11:30 am
7405 W Northwest Highway
Dallas, TX 75225
Wednesday, April 11, 2012
It is with heavy hearts that we share with you OUR BELOVED - SWEET CHARLOTTE - unexpectedly died at 7:03 pm. Her heart was fine up until the second it stopped. Patrick and I were blessed to be with her as she took her first breath...and as she drew her last. We know that as HE carried her home, it was in HIS time and under HIS direction. May HE hold her close until we meet again.
Tuesday, April 10, 2012
There's a good reason that I didn't blog yesterday. I couldn't! With so much activity centered around going HOME, every second of my day is accounted for, with no time for "extras." I realized this last night as I was typing at 11 pm while dozing off.
The good news through our even more so hectic schedule is that we are getting our DUCKS in line to G-O. Can I get an AMEN?! Word on the street is that Friday may be "the day" of discharge. We pray so! Today though we have an instruction on learning to use her pulse oximeter which will tell us what her oxygen saturation is when we are at home. This is important because it's a great indication as to her "state of the union." Since it measures the oxygen in her bloodstream, it tells us if her circulation is getting wonky and if so, it tells us that her BT Shunt in her heart is not working correctly.
We've also been playing "nurse." I should have an honorary nursing degree after our almost 10 week crash course here! I jokingly say that I've been home schooled each day by the best of the best. True. Daddy Patrick and I have been administering meds through Charlotte's Gtube. Remember that anything which would go through her mouth, now goes through her Gtube. So that means, her feedings (milk) and daily medicines, multi-vitamin. Patrick and I will also learn how to use the pump which connects to her Gtube and will administer continuous feedings over the course of the next few weeks, as the incision heals. Once it has and her gut has had a chance to transition to feeding, then she will have an outpatient procedure to take out the tube from her stomach and replace it with a "Mickey Button." A Mickey Button looks like the cap to a beach ball. Through it, we will feed Char Char her milk feedings via a syringe. Easy peasy.
We are HAPPY to add to our already long list of to-do's. HAPPY because our SWEET CHARLOTTE is coming home soon. Quack.
Sunday, April 8, 2012
There are so many blessings in our life on this Easter Sunday. Charlotte's life is just one of the many which we've experienced. At mass this morning, I was humbled when I thought of her journey and knowing that the Great Creator's Hands had been stitching up surgeries, calming scary situations, steering us through her complicated course...and it happened JUST the way HE wanted it to unfold. Every inch, every fiber of Charlotte is perfection, and all thanks to His handiwork.
We hope that if Charlotte continues on her get well soon path, that we will break free of the hospital soon. Perhaps late week/early next? We're not getting ahead of ourselves, but this Mommy can almost TASTE the freedom for Charlotte. Walks anytime we want, no monitors, no busy hospital...just busy life with Mommy, Daddy and brother and just the way we like it! We pray for Charlotte's continued healing and COMFORT. She's had a rougher last day or so but it seems as though she's turned the corner and is more comfortable pain-wise. We pray for a WELL-BEHAVED Sweet Charlotte and for the peace which we have been granted throughout our journey. As Charlotte shows that she is able to continue tolerating "eating" (milk feedings through her Gtube) and shows consistent growth over the next few days, she may just earn her ticket HOME. All the more wiser, He knows her path and is leading us there, in His time.
Thank you for your continued love and support. It is the greatest gift and one which we continue to cherish. Hug your babies tighter tonight, on this very special Easter Sunday because as you've seen over the past 9 weeks, GOD IS AMAZING.
Thursday, April 5, 2012
Guess who's back? Miss Charlotte! I called it when I first saw her post operation. She was fiery then while highly medicated, so I'm impressed that she made it until early afternoon before being EXTUBATED. Despite having come back from the OR with a few more jewels (er, external hardware!) she was not hindered as she flailed around. Much like last week, she "told" us that she was ready to extubate. And although MUCH happier, she was in a bit of pain earlier, so a friendly dose of medicine has helped her to calm down. Thankfully, she is resting now. We pray for swift healing and steady growth.
Those who know your name will trust in you, for you, LORD, have never forsaken those who seek you.
I'd like to think of Charlotte's Gtube surgery as a new beginning for her. She's already accomplished so much in her short little life and with this surgery, she will be able to accomplish so much more as she LIVES LIFE. As a friend wrote me, how appropriate this good news is to share during Holy Week. So true.
And as I JUST heard from the surgeon's mouth, Charlotte did BEAUTIFULLY. One of his best surgeries to date in fact as he gave thanks to God for the success. GOD certainly hand picked HIS crew to lead Charlotte through this course, hasn't HE? HE is good.
She is getting settled in her room and soon we can be with her. She'll be intubated (breathing tube in) possibly until tomorrow, but as we have learned from experience, everyone's favorite little muffin has a mind of her own, so we pray that she is able to rest comfortably until it is time to take it out!
Next on the agenda is for her to heal. After all, this is major surgery. She will be on a clear liquid diet for a day or so and then slowly increase her milk feedings. As soon as she can show that she is consistently gaining weight, she will be DISCHARGED. CAN I GET AN AMEN?!
So sing your song, SWEET CHARLOTTE. We're all listening to what you're going to say...
Wednesday, April 4, 2012
Great news! Looks like there was an opening on the surgeon's calendar so Charlotte's surgery has been rescheduled for tomorrow, Thursday, at 730 am! Happy Day.
Trust steadily in God, hope unswervingly, love extravagantly.
1 Corinthians 13:13
Tuesday, April 3, 2012
Live more. I feel like Charlotte gets to lately. She is more "baby like" now that she is better, and is able to experience basic needs in life like being HELD. Fortunately, there is never a shortage of arms in which to cradle my SWEET CHARLOTTE. We are so grateful for her baby cries and her baby ways.
She had a better night last night, as she rested comfortably and SLEPT. Still very bothered by diaper issues, she seems to be adjusting to her feedings overall. And since her surgery is scheduled for Friday, we pray that she remains comfortable and healthy before...and after, as she will still have the PICC line until she is discharged. Each day that she has a line, is another day of risk for infection. We pray that He shields her from that and continues to hold her in HIS arms. Prayers, too, for "Baby Patrick" that he may feel comforted by His peace.
And to read more about the Gtube and Nissen surgery, please go back to our "CARPE DIEM" post. As always THANK YOU for all of your support and prayers!
Monday, April 2, 2012
Patrick Jr. loves, loves his trucks. Big trucks, little trucks, red trucks, blue trucks. Trucks. They all are his treasures. And who can blame him? They are big. They are "take charge." And they make a lot of noise.
You know who else makes a lot of noise? Sweet Charlotte. I've not mentioned that over the course of a couple of weeks, her vocal chords have begun to heal. And fast! She has found her voice and certainly loves to use it - just like her Mommy! :) Like Patrick, she isn't to blame especially considering she hasn't had any 'creative liberty' before now.
Unfortunately for Mommy's sake, she wasn't a happy camper last night. Whether needing to be held, a low threshold for dirty diapers or a VERY bad case of diaper rash, little bit didn't "do" last night. Period. Fortunately, "we" paid CLOSE attention to her downtown issues and hopefully they are being addressed as needed. Hopefully, she will be comforted tonight and those to come. Hopefully she won't have anything more to contend with before her Gtube surgery/Nissen surgery on Friday. We pray.
If her surgery date changes from Friday, I will be the first to let you know, as your prayers are our lifeline. They are my comfort. My go-to. My everything. And, with everything that I have in me...thank you for making Charlotte your love. She is certainly ours.
Sunday, April 1, 2012
Charlotte had another great day. She rested comfortably and about all on her to-do list was taking her antibiotic. Check. Plus, Mommy had the treat of helping with her bath tonight. There's nothing like a clean baby, especially when she gets to be swaddled and placed in her mommy's arms afterwards. And other good news is that we should find out the date of her Gtube surgery tomorrow! Then the countdown to home really begins. I almost can't imagine, but then I can and it's so good.
As always, your prayers, linked with ours, carry our SWEET CHARLOTTE each day. And that's just the way this Mommy likes it.