Looking for the Love of A Family

My son was born with a hole in his heart.  I was a first time Mom.  Just hearing those words….”Hole” and “Heart” sent me into full-on panic.  I had fears.  I had questions.  I had so many emotions running through me.  But I also had access to doctors, cardiologists, a state-of-the-art hospital, and a rock-solid support system.  Even with all of those supports, it was still one of my hardest moments.  Turns out it was on the minor side, and only required monitoring for several years – eventually resolving on its own.

But every time I read a file of a child with CHD, I am taken back to that moment….New Mom, hearing the words…”Hole”…”Heart,” and my heart aches for the mothers in other parts of the world who had the same fears, questions, and emotions that I did, but with no supports.  With no state-of-the-art facilities to turn to.  With no way to help their baby.  And my heart aches for them.

Meet Hanna and Ashton.  Two amazing ‘heart warriors.’  Two kiddos with imperfect hearts who need access to not only medical care, but to the love and support of a family who will see them through whatever procedures they need.

Hanna
Ashton

Ashton and Hanna are available for adoption through Madison Adoption Associates.  Both qualify for the $1,000 For Ivy grant, as well as other MAA grants.  To learn more about Ashton and Hanna, and our other Heart Warriors, complete the Prospective Adoptive Parent form.  You can also ‘meet’ many of our waiting children by visiting our website.

Double Broken-Hearted

Double Broken-Hearted

What exactly does it mean to have a broken heart?  Of course, there is the figurative meaning that feelings of lost love are so strong, it truly feels like your actual physical heart is broken.  And then there is the literal meaning when your heart does not work like it physically should.  But what about when both are present?  What should we call it then?  Double broken hearted?  Enter Grayson.  One of the sweetest boys I have ever encountered in my entire life.

Some might say Grayson has a double broken heart, literally and figuratively.  Literally, because it doesn’t quite work as it should.  Figuratively, because he still waits for a family.  But, after meeting Grayson, I refuse to believe that this boy’s heart is anything but pure, sweet, and amazing just like him.  Despite all he has been through physically and emotionally, he is sweet, empathetic, kind, and caring.  Grayson loves so much more than many people I know with ˜perfect’ hearts.  Not to mention his smile that completely lights up the room.

Today is Grayson’s birthday.  He’s 11.  So to celebrate Grayson today, and his perfectly imperfect heart, please share about him with all you know, in hopes that his next birthday will be celebrated with a full heart surrounded by family and love.  Include a simple heart emoji with your post or forward¦let’s light up social media with hearts for Grayson!


Grayson is available for adoption through Madison Adoption Associates.  There is a $4,000 grant (which includes the $1,000 For Ivy grant) available to the family who steps forward for Grayson.  Please email Sarah@madisonadoption.org for more information, or complete our Prospective Adoptive Parent form.  And if you are not in a position to adopt right now, please share!!

For Ivy Honoring a Hero {An MAA Grant for children with complex CHD}

For Ivy  Honoring a Hero {An MAA Grant for children with complex CHD}

We are honored to be able to share Ivy’s story with you.  We would especially like to thank Mary and Bryan S., Ivy’s parents, for not only opening their own hearts to a child with complex CHD, but also for their willingness to share their precious Ivy with us.  Thank you, Mary, for your beautiful words¦


Honoring our Hero,

For those of you who are new to our story, our precious Ivy Joy went home to Jesus on March 20, 2017. Ivy had a complex heart defect with many complications and many miracles to follow. She came home at 21 months, unrepaired and very sick, but more importantly, incredibly wanted and incredibly loved. She would undergo 5 open heart surgeries in 10 months, have set back after set back, and miracle after miracle. She just never stopped fighting and she never stopped smiling. Friends, when our girl could have said, œwhy me?, she said, œHow blessed am I?  Honestly, she never ever complained or felt sorry for herself. She woke up every morning, choosing JOY in spite of her circumstances. She is such a special child and she knew it, boy did she know it!!!! I know our girl is alive in heaven, singing with the angels, dancing with all the other precious children whose mommies and daddies also had to say goodbye for now, all too soon.

When I left for China to bring our precious 5-year-old daughter Charlotte home, my biggest fear was that my plane might crash and Ivy would no longer have me to mix her medicines, remember all the right snacks to take with us for her ongoing cardiology appointments, or care for her the way I do. I prepared the girls Easter baskets before I left, telling our older daughter where they were in case anything happened to me. The last thing on my mind was the thought of me, having to learn live life without Ivy.

On March 20, 2017, just hours after meeting Charlotte in China, our baby girl, the light of our lives, took her last breath at home and took her very first breath in heaven. Our lives were turned upside down in one second and I am here to tell you, we continue choosing joy because she taught us how. So, we continue to strive each day to make her proud of us as we count the days till we see her and hold her again. It is the hardest thing I’ve ever done. I don’t like it, but she taught me well and Jesus made a way for us to be together again so I have so much to be thankful for. He never promised she’d make it past her first surgery, but she did. I vowed to Him the day she came out of her first open heart surgery on ECMO that if He took her home that night, I’d still praise Him, I’d still thank Him, for the blessing of being her mommy even for just a few months. Well, with miracle after miracle, Ivy did come home. And we snuggled and giggled and grew and laughed and loved and learned so much from her for 5 precious years. Oh how I miss every single thing about her. It is new grief every single day and new mercies get us through every single morning.

I traveled to China on March 18th for a March 20th gotcha day. I was so very blessed to have had a friend traveling with me on this trip. And I will never forget just laying on my bed, screaming out in pain and agony and complete brokenness. She came to me, so completely broken and scared and worried and she said, œhoney, what do you want to do? whatever you want, however you want to go about it, no one will judge you, everyone will understand that there is no wrong or right here.

And without even having to think, with the power of the Holy Spirit and the gift of all the modeling by example Ivy Joy had done for me over the 5 years I was blessed to have her on earth, I answered.

I said, œKim, Charlotte waited 5 years to have a family, she did nothing wrong, and there is no way that Ivy would have any part of me leaving her in China. I am Charlotte’s mom as much as I am Ivy’s. And what I want is to get home to my family as fast as anyone could ever fathom, with Charlotte holding my hand. I want God to move mountains for me to get home tomorrow, so I can grieve with my family and see my baby for the last time, even if it’s just her shell.

And so, with my friend’s non-stop work, and with the efforts and kind hearts of both the Chinese and American consulate, and the constant help and support of Madison Adoption Associates, Charlotte and I made history and finalized her adoption the next morning, and came home. My poor girl was so confused and scared watching this new mommy of hers cry so much. And it got even more frightening when we arrived to a group of 8 more people crying and grieving. But she was grieving too, so we quickly bonded, as we all understood what loss felt like. The beauty of our grief was that we had each other to grieve with and at that moment, it was the only thing that mattered.

February is such an important month in our home! February is Congenital Heart Defect Awareness month and February is the month that we adopted Ivy and she became our beloved daughter! We met on February 13th (œher gothcha) and on Valentine’s Day, February 14th, we signed all the China documents that made it official. How perfect that her family day was on Valentine’s Day!!!

I will end this with a testimony of the gift our daughter was to us. If I had a chance to do life over, with this same scenario and this same outcome, I would have my hands in the air with the biggest YES just to be her mommy for however long God gave me! YES it was worth it, YES it was hard, YES it is hard, and YES life is so much better because she was in it. Easy is just that, easy. Easy would have meant that there was no Ivy Joy. No being Ivy’s family. We know that true joy is chosen. It is searched for and chosen. We give thanks for so much more than just things that can be seen. We have experienced the richness of life, we have seen miracles, and we have watched doctors scratch their heads as Ivy recovered from things that she was not expected.

We have seen heartache that we wish NO ONE would ever have to experience. Every moment, every high and every low, was so worth it!

Reading the file of a child with heart defects is scary stuff, it’s not for the faint at heart, it comes with no promises. But behind that file, is just a little child who needs a family! We had no idea how much we needed Ivy, but it was certainly more than she needed us. Our YES was hard; but with our YES came unspeakable joy!

Don’t let HARD scare you. Hard teaches, hard grows us, hard matures us, and hard causes us to reach out for the only hand that will always be there for us, today, tomorrow, yesterday, and infinitely.

With Love and Joy,

Mary


MAA is humbled to offer the ˜For Ivy’ $1,000 grant to families adopting any child with complex CHD.  And while we are featuring Ivy’s story in February in honor of Heart Awareness month, we are happy to offer this grant year-round, as we stand by all children with CHD like Ivy, and strive to get them all home as soon as possible.  To meet some of the children we are advocating for with complex CHD, please visit our website.

If you are not in a position to adopt, but would still like to help bring these children home, please consider donating to the For Ivy grant so that we can offer this grant for years to come!

The You Now – Johnny

The You Now – Johnny

Oh Johnny!  You are so much more than number three thousand five hundred and ninety-eight.  We knew that all along¦.but now we can share more of you with the world!!  The you that is NOW, not just the you from ten years ago.  The you now is active and busy, but also well-behaved and obedient.  The you now can run, jump, and climb like other kiddos your age, and do all the fine motor skills of your peers as well!  The you now tries hard in school, and has good relationships with friends.  The you now cares about others, and has no challenges with language.  Your speech is comparable with adults!  And Johnny, last but not least, the you now knows what adoption is, and the you now wants to be adopted.

Dear, sweet Johnny.  You are perfect.  You have sat on the shared list for years, just as a number.  But you are oh so much more than that.  The you now is perfect, as was the you then.  And our hope and prayer for you is that your Mama and Baba will see the you now, and step up and say you are meant to be theirs!


Johnny is currently waiting with Madison Adoption Associates.  He will turn 11-years-old in a few months.  There is a $1,000 grant available to the family who adopts Johnny, with other grants possible.  To learn more, please complete the Prospective Adoptive Parent form.

Three thousand five hundred ninety-eight

Three thousand five hundred ninety-eight

I was perusing the shared list as I do most nights, searching by gender, then by age, then by province, then by special need.  Clicking on so many different files, and seeing so many different faces.  When for some reason I decided to open the absolute last file on the list.  Number 3,598.  Yes, that is number three thousand five hundred and ninety-eight.  Say it with me¦.THREE THOUSAND FIVE HUNDRED AND NINETY-EIGHT.  I can’t even comprehend how huge that number is when it is in reference to waiting children.  And, as we know, that number doesn’t even scratch the surface of the number of orphans in the world.  Any way….I digress.  Back to that file¦.the last one on the list.  #3598.  I knew I had to do something for him.  Because he is not just the last file on the list.  He is not just number three thousand five hundred and ninety-eight.  He is a child.  He is a boy.  He is a soul.  Waiting.  Waiting for what all the children are waiting for¦.a family to say Yes to him.

So as I open his file and start reading, I notice the date that it was posted to the shared list.  March 19, 2010.  9 years ago.  Nine years.  And since we’re talking about numbers here, let’s say that number together too¦..NINE YEARS.  His file was released 9 years ago.  What were you doing then?  I was getting ready to meet my first child.  Who is now ALMOST 9.  I feel like I have lived an entire lifetime in these past 9 years.  And that whole time, Johnny has been waiting on some list. 

His file was completed when he was 4 months old.  He’ll turn 11 in a few short months.  His file talks about baby babble, and rolling over.  There is nothing about his life as a toddler, or as a little boy, or as now a young man.  Nothing about his likes and dislikes.  There are no updates.  Of course we are doing all we can to get an update, but what if we can’t?  What does that mean for Johnny?  That he will continue to hold his spot as #3598?  The last on the list?  The one that sat and sat and sat for years, with no one asking about him, until he turns 14 and loses his chance at a family?  Please, please let that not be the case.  Johnny needs more than just us fighting for him.  He needs a family fighting for him.  Demanding answers.  Begging for updates.  Johnny needs a family, his family, to step up and never, ever let him hold last place again.


Johnny is currently waiting with Madison Adoption Associates.  He will turn 11-years-old in a few months.  There is a $1,000 grant available to the family who adopts Johnny, with other grants possible.  To learn more, please complete the Prospective Adoptive Parent form.

THANK YOU – Our Giving Tuesday Recap

THANK YOU – Our Giving Tuesday Recap

˜Thank You’ doesn’t seem sufficient enough to represent our feelings of gratitude.  Maybe Thank You in 10 different languages would be better?

謝謝. БлагодаÑя ти. Gracias. አመሰግáŠáˆˆáˆ. Спасибо.  Salamat. Gratias tibi. áá»á±á¸á‡á°á¸áá„áºá•á«áášáº. ありがとうございました. DziÄ™kujÄ™ Ci. 

Nope.  Still feels too little.  So, we’ll just stick with a simple Thank You.  But please know that it is a Thank You filled with sincerity, and pulled not only from the bottom of our hearts, but from the hearts of the four Angels in Adoption families as well.  You see, with your generosity, we were able to raise close to $8,000 for our Angels in Adoption!!  We were able to bless each ever-so-deserving family with close to $2,000 thanks to you!  This gift YOUR gift went towards specialized formula, medical procedures, travel associated with medical therapies, and so much more!  So, on behalf of MAA, the four Angels in Adoption families, and their four very special kiddos, we’ll say it one last time THANK YOU!  Thank You for making this Giving Tuesday a memorable one for us, and more importantly, for our Angels in Adoption.

Why Host?

Why Host?

You’ve seen their pictures.  You’ve heard some of their stories.  You’ve read our pleas asking you to step out of your comfort zone and fill in the gap for these kids.  These kids who have waited for years and years for their chance at a forever.  These kids who are so much more than words in a file.  But the excuses are so easy to hang on to.  œWe are too busy.  œWe’d have to rearrange our bedrooms. œThe kids might get too attached.  The list goes on and on with the ˜why we can’t’s.  And we get it.  We really do!  But as that list continues to grow, we ask you to just pause for a moment, and ask yourselves, Why Not?  Even take it a step further, and don’t just ask, but really consider, ˜What if we did host?’  ˜How would we be impacted?’ ˜What would it mean for us and the hosted child?’  ‘What would those 20-25 days look like?’  None of us know the answers to those questions.  But some possibilities are that you could offer a life changing three weeks to a deserving child; you could learn about a new culture, and share your own; you could become the answer to a waiting child’s prayer; you could be forever changed, and change the life of a child; or maybe, just maybe, you could fall in love.  Now, wouldn’t all that be worth it?  Think about it.

We are hosting a conference call on December 18, 2018 at 7pm CST to answer ALL of your hosting questions.  From standard hosting to ˜reverse’ hosting, from big picture to minor details, please join us to have all of your questions answered!  The dial in number is (605) 468-8845, with a participant access code of 813043.  We look forward to having you there!  And we look forward to you choosing to be the change that will change a child’s life.


To learn more about our hosting programs, please visit our website, or email michelle@madisonadoption.org for more information.

Giving Tuesday – The time is NOW

Giving Tuesday – The time is NOW

We’ve given you a glimpse into the day-to-day lives of our Angels in Adoption.  And while each and every one of them would say, œNo way¦.we are not the brave ones¦.it is our children who are, to that we say, you ALL are.  Brave, courageous, faithful.  These four families (meet them here, here, here, and here) sacrifice day in and day out for these four precious children.  They pour their all into them, so it is our hope to pour even just a little back. 

THE TIME IS HERE.

THE TIME IS NOW.

It is Giving Tuesday. 

Time to GIVE.

We ask that you do what you can in joining us in showering these four families with love and support.  Our hope is that our gift will give these families the opportunity to just take a bit of a breath.  A couple date nights, help with the holidays, slight relief from the never-ending medical and travel bills.  Whatever they decide, you can rest assured they will do so with a smile on their faces, thanks to you.  And because we believe in this cause with all of our hearts, we are happy to match each and every donation*!

Thank you for your generosity!

And thank you to the Sims, Johnson, Pitts, and Taylor families for not only sharing your journeys with us all, but more so for that one, little, big, significant YES you said to your children.


You can donate directly on our website, or send a check to:

Madison Adoption Associates

1102 Society Drive

Claymont, DE 19703

100% of donations will go towards the four Angels in Adoption.  Please specify on your donation that it is for Giving Tuesday.

*MAA will match donations up to $4,000

THANK YOU!!!




 

Angels in Adoption – The Taylor Family {Giving Tuesday}

Angels in Adoption – The Taylor Family {Giving Tuesday}

Your bellies are full, and your hearts are thankful.  Ours are too –  thankful for you all, for all of our families, and especially for the four Angels in Adoption that we have introduced you to over the past month.  In case you missed it, we are so excited to be raising money for these four special families on Giving Tuesday.

Four MAA Families who have endured the unthinkable.  Four MAA Families who knew the risks, and said Yes regardless, because it meant a Yes for their child.  These four families have been to the brink, and are all still working their way back.  Their days are filled with medical appointments, surgeries, unknowns, heartache, worry, but ultimately, joy.  So.much.joy despite the hard.  Despite being in the trenches.  So, it is for these Four MAA Angels in Adoption that we are reaching out to you.  Our dream is to shower them with love, and gratitude, and support.  They have poured out their hearts and souls into their children, and it’s time to pour into them.  Their lives have been turned completely upside-down due to the intense medical needs of their children.  So, we want to just do a little something to say, œWe see you.  We notice you.  We love you.  Whether it’s a Target gift card to help with the holidays, or a much needed night out for Mom and Dad, our goal is simple to give just a little something to four MAA Angels in Adoption who continue to give their everything, day in and day out.

As we introduce you to our final Angel in Adoption, we thank you for ‘meeting’ these four special families – for reading their stories, and holding them in your hearts.  As we have shared about them with you, our hope is that you will share what you can with them.  And because we are so dedicated to this, we, too, are going to share.  We will match your donations for each family.*

Last week you met the Pitts family, and their daughter Clara.

Our final Angel in Adoption who we want to shower with love on Giving Tuesday is the Taylor family¦

Our journey to Everly took 613 days, but God had a hand in it all.  Back in 2015, a friend, who worked at New Hope Foster Home outside of Beijing, told us there was a spunky little girl who needed a home.  So after years of praying about it, we started the adoption process.  The paperwork, the files, the logistics, all of it seemed endless, but God had such a plan for our family.  In November of 2017, we traveled to China, with our older daughter, Lorelai, to get Everly.  We fell in love with her instantly and our whirlwind trip went relatively smoothly.  We brought her home on December 1st, and the entire family was smitten with our sweet little girl.

6:30am wake up for chemo day

Upon settling into family life and getting a grasp on her health condition, we found out she had a large brain tumor which we were completely blindsided by.  We knew she had Epilepsy when we adopted her, but we were shocked to hear she was likely born with a brain tumor that had gone undetected for 4.5 years.  Living close to the Children’s Hospital of Philadelphia (CHOP), we knew we were surrounded by world-class doctors.  In May of 2018 she underwent a partial tumor resection of her brain.  She is the strongest little girl we have ever met, and she recovered from her surgery like a champ.  Since some of her tumor is inoperable, Everly is currently undergoing a year of weekly chemotherapy treatments in hopes of stunting the growth of the remaining tumor.  She has her CHOP nurses and doctors amazed at her strength and resiliency, and we are amazed at the growth and development she has made this past year.  She’s currently in part-day preschool and is learning so much, despite being in weekly treatments which cause her some nausea and fatigue a few days a week.

Everly’s brothers and sister love her to pieces and we are so thankful for our amazing community of friends and family who pray for her and root for her constantly.  We know God had a plan for this little girl when He brought her home to us, and He used her to put a smile on so many people’s faces.  We are so thankful to Madison Adoption Associates for helping us bring her home.

Thank you, Melanie and Joe, for sharing your family’s journey with us.  You are in our thoughts and prayers!

 


While our goal is to raise funds on Giving Tuesday (November 27), we welcome you to make your donation whenever you feel so moved between now and then.  You can donate directly on our website, or send a check to:

Madison Adoption Associates

1102 Society Drive

Claymont, DE 19703

100% of donations will go towards the Taylor Family, and our other three Angels in Adoption.  Please specify on your donation that it is for Giving Tuesday.

*MAA will match donations up to $4,000

THANK YOU!!!

Angels in Adoption – The Pitts {Giving Tuesday}

Angels in Adoption – The Pitts {Giving Tuesday}

We are excited to continue our Giving Tuesday Angels in Adoption Campaign!  In case you missed the announcement, this year we are so excited to raise money for four very special families!  

Four MAA Families who have endured the unthinkable.  Four MAA Families who knew the risks, and said Yes regardless, because it meant a Yes for their child.  These four families have been to the brink, and are all still working their way back.  Their days are filled with medical appointments, surgeries, unknowns, heartache, worry, but ultimately, joy.  So.much.joy despite the hard.  Despite being in the trenches.  So, it is for these Four MAA Angels in Adoption that we are reaching out to you.  Our dream is to shower them with love, and gratitude, and support.  They have poured out their hearts and souls into their children, and it’s time to pour into them.  Their lives have been turned completely upside-down due to the intense medical needs of their children.  So, we want to just do a little something to say, œWe see you.  We notice you.  We love you.  Whether it’s a Target gift card to help with the holidays, or a much needed night out for Mom and Dad, our goal is simple to give just a little something to four MAA Angels in Adoption who continue to give their everything, day in and day out.

Over the course of the next week, we are going to continue to introduce you to these families.  We are going to share with you what they are going through, in hopes that you will share what you can with them.  And because we are so dedicated to this, we, too, are going to share.  We will match your donations for each family.*

Last week you met the Johnson family, and their son Noah.

Our next Angels in Adoption who we want to shower with love on Giving Tuesday is the Pitts family¦

We met our beloved daughter, Clara Jane Rou, on July 24, 2017 in Ningxia, China. She was so beautiful and so perfect and so loved by us already, but she was so malnourished and sick. We knew her medical needs were potentially more severe than her file outlined, and we were correct. Her file listed repaired tetralogy of fallot, microtia/atresia of the left ear, hearing loss in both ears, asymmetric crying facies syndrome, global developmental delays, and cognitive delays. We instantly knew there were likely some more needs that were undiagnosed/undisclosed, but we said yes to her knowing how complex her medical needs were; there was nothing that would keep us from our daughter!

Once home, we were met with a whirlwind of medical appointments and testing. During her first year home, Clara saw 12 specialists over a period of 56 appointments and had 12 procedures and 8 rounds of blood work done. It was a crazy year! But oh my”we saw Clara transform from a terrified and broken shell of a child to a little girl with a smile and personality that lit up the room. She went from laying on the floor while unresponsive to learning to walk, run, climb, and explore with abandon. She went from completely non-verbal to beginning to learn basic signs (using ASL) and communicating her needs.  She also grew a substantial amount; she went from size 6 month clothing and newborn size diapers (at 30 months old) to size 2T and size 4 diapers.  One of our favorite changes was watching her develop an adoration for her older siblings and start following them around the house and mimicking them. By summer of 2018, Clara had developed into a sassy, spunky, vivacious little girl who truly loved life and loved her family.

While she had been blossoming emotionally, she was also making big gains medically. By summer 2018, her medical needs were all under control and well managed. She was considered in maintenance at that point so we only needed to her all of the specialists once a year. It felt so good to have reached that point after such a long year. Our family was finally feeling settled in a good place and was enjoying life to the fullest.

Then in July 2018, Clara’s personality started to change. She started becoming more clingy and less playful. She then became really constipated  and nothing we nor her pediatrician could suggest worked so we had to have her admitted to the local Children’s Hospital for a full GI clean out. She was there for three days. Two days after discharge, she started throwing up. She threw up fifteen times that first day. The ER said she likely caught a virus during her GI clean out and prescribed Zofran and sent us home. Over the next four days, she continued to vomit in excess. We took her to GI, her pediatrician, and then back to the ER before they finally admitted her. She was there for eight days while they completed every test they could think of. During that time, Clara continued to lose weight. She lost 25% of her body weight before they placed a ng tube. She also started losing some of her milestones, which the doctors attributed to her nutritional status. She was discharged with the ng tube and more Zofran on Friday, August 10th. That weekend, Clara started reacting to her ng tube due to her severe oral aversion; she kept gagging and chewing on her tongue and was just miserable. I called the hospital and spoke to the GI attending multiple times about my concerns. I begged and pleaded with them to give Clara a g-tube, which the attending eventually agreed to do. We were told to come to the hospital on Monday to be directly admitted for the surgery.

We arrived on Monday and were seen by the nurse, the resident, the attending, and the surgical resident within an hour of arriving. Everyone said she looked good, and we could move forward with the surgery the next day. The nurse gave Clara some intranasal versed to calm her down before placing her IV”standard procedure for Clara given her very severe medical trauma. Within minutes, Clara crashed in my arms, and I went running for help. They tried placing an IV to pump her full of fluids, but they couldn’t find a vein so they called for an ICU team to assist. The two ICU nurses arrived and started working on her while the ICU charge nurse watched the monitor and chatted with me about how they do this often, and it’s not anything to worry about. Suddenly, she jumped up and started yelling asking if her BP was really dropping that fast. She ran it again and immediately called a Code Blue. The room swarmed with about 30 people while I was pulled into the corned by the floor resident doctor and a chaplain. I watched as six ICU doctors worked tirelessly to find a vein to place an IV while also bagging her to keep her alive. When her blood pressure reached 30/22, they called for the drill and drilled directly into her bone to place the IV line. It was terrifying, but she was stable. I was assured that all was well now. She would spend the night in the Pediatric ICU, receive her g-tube the next day, and be back on the floor by the next night. My husband arrived at the hospital shortly after that to stay the night with us in the PICU. We were both so shaken up but grateful that the scare was over, and our daughter was okay.

At 4;45 AM the next morning, the lights in Clara’s PICU room were flipped on, and the room filled with doctors and nurses. After a calm night, Clara had suddenly become very tachycardic, and no one knew why. From there, everything started to fall apart. They attempted to place a central line for better access, and she crashed again. It took them an hour to stabilize her, during which they had to place a breathing tube. She went on to have two echocardiograms and two EKGs that all showed her heart was fine. The team started exploring other options and ran many other tests, all of which brought no new information, all while Clara continued to decline rapidly. By Thursday, they told us the only option that made sense (since everything else had been ruled out, and her heart was still acting up) was her heart, but since the two echos and EKGs had shown everything was fine, they needed to do an emergency heart catheterization to see if they could gain any new information. They made it very clear to us that this was a last resort because she was dying, and they didn’t know why. They also made it clear that there was a high probability that she would die on the table, but there was nothing else they could to save her at that point without any new information. It was horrific. We said good-bye to our precious, beloved baby girl as did all of the doctors and nurses who had worked with her up to that point. The attending from the night shift showed up, and both her and the daytime attending had tears in their eyes as she was wheeled away to the cath lab. Everyone was there to say their last good-bye to our daughter, which was both touching and heartbreaking. By the grace of God and the skilled hands of the best anesthesiologist around, our daughter LIVED through the heart cath. Our sheer joy turned to terror as we soon learned our daughter was in full heart failure”biventricular diastolic dysfunction to be exact. She was moved to the Cardiac ICU where we met an incredible doctor who went on to save our daughter’s heart. It took weeks of meds and waiting and many, many scary moments of almost losing her, but she and her heart were saved!

Throughout her recovery, Clara remained comatose on light sedatives with a breathing tube. She never woke up and very rarely initiated a breath on her own. The machines were keeping her alive. The doctors started to talk to us about a tracheostomy for our daughter, but we wanted to give it time, thinking it might not be necessary as we weaned her sedatives, and she started waking up. She had never had any respiratory issues so we (nor her ENT who came to speak to us) had no reason to believe she would need a trach for breathing support. Unfortunately, as they started weaning her sedatives, she wasn’t becoming more responsive. The team called for an MRI, and from that, we learned our daughter had suffered a hypoxic brain injury due to poor profusion from her failing heart. One of the areas affected was the hypothalamus, the part of the brain that impacts consciousness and sleep. They again prepared us for her death. They did not think she would wake up. It was devastating. After all, our daughter had lived through heart failure! Now this? It was too much.

My husband and I decided that if our daughter was going to die, we wanted to spend our last few days holding her. That was not an option with her breathing tube so we asked for the tracheotomy. The team agreed, understanding our reason for that choice. Then miraculously, our daughter woke up! SHE WOKE UP! Our baby girl was ALIVE! Thank you, Jesus!

Clara’s tracheotomy was scheduled for the following Wednesday, but when she woke up, she was just struggling so much with the breathing tube due to her severe oral aversion. She kept chewing on her tongue and gagging so much that the surgery was moved up to Sunday (on a holiday weekend!). After the tube came out, Clara’s tongue would not fit in her mouth. In fact, it was white”yes¦.WHITE. Clara had developed a very rare complication from the breathing tube called ischemic necrosis of the tongue. The ICU was worried she would lose her tongue. In an effort to save it, she was sedated and medically paralyzed so that a bite block could be placed in her mouth in an attempt to restore blood flow to her tongue. No one knew if it would work, but it was the only option they had. Thankfully, it worked, and Clara did not lose her tongue.

The next six weeks were spent in patient with many highs and lows. Clara moved out of the Cardiac ICU to the Cardiac Transitional Care Unit, and then from there she moved to the pulmonary floor to start weaning her vent settings. During this time, the team weaned down her ventilatory support in the hopes that she would be able to leave the hospital with only the trach”no vent support needed. Unfortunately, she developed a viral infection and then a bacterial infection that left her already weak lungs even weaker. She went from minimal support for a few hours a day to needing much more invasive support during all sleeping hours. Despite that, she continued to have periods of rapid decline that led to her being moved to the PICU two separate more times. It was eventually determined that Clara also needed oxygen support 24/7.

Clara was released from the hospital on October 30 and is now home right where she belongs. Our precious girl has a lot of added œaccessories”trach, g-button, oxygen”that we have had to learn how to operate and care for, but even with the extra work, we have happily embraced it all; we are just so thankful she is still alive. We have a long road ahead of us as we work to see if Clara will ever be able to gain her strength back again. At this time, she is no longer able to climb, run, walk, or even stand up at all. Even just sitting up in a chair with invasive support is challenging for her. We are hopeful that one day she might walk again, but for now, we start with the basics and work up from there. Clara’s shining personality has returned, and she is just as sweet and sassy as she was before everything. As a family, we are all working through the emotional trauma we sustained and will likely continue to need to do so for a very long time, but we also rejoice in the fact that our family of six is all together again under one roof. We take each day one at a time, relishing in the gift of all being together once again.

Thank you, Ashley and David, for sharing your family’s journey with us.  You are in our thoughts and prayers!


While our goal is to raise funds on Giving Tuesday (November 27), we welcome you to make your donation whenever you feel so moved between now and then.  You can donate directly on our website, or send a check to:

Madison Adoption Associates

1102 Society Drive

Claymont, DE 19703

100% of donations will go towards the Pitts Family, and our other three Angels in Adoption.  Please specify on your donation that it is for Giving Tuesday.

*MAA will match donations up to $4,000

THANK YOU!!!