More than I could bear

June 7, 2014 by Amy 5 Comments

Gbath14-1769

Sometimes I forget that we have a child who is a “heart baby”, a lifelong cardiac patient, a survivor. I see her scars everyday. Scars from a surgery I wasn’t present for, scars from one I was; and, I have come to love what they represent. They are a daily reminder of healing, a unique tattoo of her miraculous-ness, and evidence that she is a living breathing answer to prayer – to many prayers. She was ours for only a month without her scar from heart surgery and I actually don’t remember what her chest looked like without it. Those early days of jetlag and adjusting with a new child with multiple health concerns are such foggy memories to me now. Once Gotcha day happened we kicked into survival mode and camped there for those few short weeks between returning home, heart surgery and returning home again to discover our “new normal”.

This month marks a year since we had the first visits with the cardiologist, the echocardiogram, got the call saying when surgery would be, and prepared as best we could for those days of repair and recovery. I’ve come to believe that God must carry us through hard things in such a delicate way so that He protects us from absorbing the magnitude of the scariest things we endure. He provides us the strength to survive it, like manna from heaven, enough for the exact moment we need it. Not a moment late, He brings strength and the peace that passes understanding. Apart from that core belief, I don’t know how we each survived those first 8 weeks with Grace, or the months prior, praying that she would hang on until we could bring her home.

recovery

I prayed many times that God would open doors for Grace to have surgery in China so that she could recover with the New Day family that she knew instead of us – the family that would feel like strangers. I was afraid we wouldn’t get to her in time because she was deteriorating. I didn’t want to travel throughout China with a cyanotic and medically fragile baby, never-mind the 14 hour flight home not how the in-flight altitude would affect her. Truth be told, I didn’t want to have to say good-bye and kiss her one last time before watching them carry her off to crack her chest. I didn’t want to endure excruciating hours in the waiting room. I didn’t want to suffer like that. My one comfort while we waited to meet Grace, was that perhaps I could only love her “so much” so that it wouldn’t be “so hard” to let her go.

closeup2

Those first hours into Gotcha Day wrecked that theory. It was obliterated, actually, and once she was in my arms, I knew for sure that there was no going back. There would be no threshold of protection for my heart, no holding back from loving her fully until surgery was complete. There would be no robotic Mama who could go through the motions until it was safe for me to love her. The things we survived as a family, I believe, were deliberate answers to prayers we had prayed long before Gotcha day. They were answers to prayers birthed from questions that every adoptive parent wonders one time or another: “What if I don’t feel the love for this child as much as I should…What if I do, but she doesn’t love me back?”

How deeply we loved her even before we laid eyes on her produced just enough instinct to protect her, to fight for her, and to battle airlines for oxygen for her. How much we loved her generated just enough patience and compassion to weather the challenging moments when she grieved or felt awful but couldn’t communicate it – so she hit us instead. How securely she became a part of me was necessary so that through the very hardest moments of saying good-bye before surgery, and blowing tear-filled kisses until she disappeared through the double doors – I could feel my heart aching affirming over and over again that she.is.my.daughter. After only 31 days home, we loved her so deeply, so fiercely, and so completely it was as if throughout the trials, the hard moments, the scary moments – We made up for 19 months of lost time. It is as if she has always been ours.

I believe only God weaves hearts together like that, and for some it may take weeks or months. For me, I believe, He knew it had to happen in a hurry. He knew that Grace didn’t need a stranger or an arm’s length Mama with her in the hospital. She didn’t deserve a woman holding back on loving her until she was well. She needed her Mother. She needed all of me.

mamagrace

Open heart surgery is common. It happens in most every hospital, most every day. It happens to both the newborn and the elderly. When it happened to my child, though, it was an extraordinary kind of restlessness mixed with relief. It simultaneously felt as though my skin was crawling, and that I was about to reach a finish line all at once. Grace had a substantial VSD (ventricular septal defect). There was an opening between her ventricles which allowed oxygenated and un-oxygenated blood to mix before heading out through her body. This caused her poor oxygen saturation and for her a normal day had her sitting in the 70’s. You and I are probably around 99% most days. Her tiny body adapted well and she lived almost 18 months without daily TET spells. These TET spells would be moments, just about every morning, where her oxygen stats would drop and she would lean a little to the right, her eyes would roll back a little, her eyelids would close a bit and she would cry. There was no comforting her. Her knees instinctively retracted to her chest and I would hold her on her side. After a few minutes it would pass. On the day before her surgery we celebrated the passing of her very last TET spell. It seemed strange to celebrate once it was finally time for surgery. I alternated between feeling grateful it was happening, and terrified from knowing too much about the risks. When you have tetralogy of fallot there isn’t a choice. Surgery saves your life.

pinklips

On the eve of surgery day, it weighed heavy what an honor and privilege it was to be with her for surgery. It nearly happened while she was in China without us, but the doctors said it was “too risky” and refused to operate. Once here in the US for two weeks, surgery was scheduled. It was happening and I got to be her person. I got to experience her healing alongside her and not just read about it in a report. As I rocked her to sleep that last night before surgery, I sang “Healer” by Kari Jobe, as I had many times before. It was more like blubbering than singing and some of the words weren’t more than a squeak. I remembered in those moments how I had once prayed, before we traveled to China, that God would just let me hold her and tell her how much we love her so that she would know she had a Mama and a Daddy and a Sister and Brother who loved her. All of the things from the travel drama, to TET spells and tests were necessary trials and each one of them shaped me into her Mama on a deeper and deeper level. It was as if her having surgery here fostered a faster attachment, a faster bonding of her to us and us to her. The morning we said good-bye to her we took our time. We sang, we played, we told her that we loved her and kissed her 1000 times. Grace’s Daddy and I waved and said “see you soon” and we held back our heavy tears until she was gone from our sight. Once she was through the doors we collapsed into each other’s arms and bawled our eyes out.

o2

Once the we learned the surgery was over, her heart was beating again on it’s own after bypass, and her oxygen saturation was in the upper 90’s it felt like everything in me exhaled after a long day of holding my breath, and many weeks of praying for that moment. Seeing her pink fingers, toes, and lips after a month of bluish gray fingers, toes, and lips is something I will never forget. The transformation in 8 hours was life changing, for all of us. I wouldn’t have missed it for anything in the world, and yet…

many times prior I begged God to let it happen without me. Many times I asked Him, “Why?” Why are you closing the door to this? Why aren’t you healing her in China so that we can bring her home well? Why are you slow in bringing about her healing, Lord?”

pinkfingers

I now know it was a blessing. I would have it no other way. It provided me a unique opportunity to grow and become the mother she needed to survive and recover and thrive. More importantly, it provided many opportunities for her to see me be there for her during the time when she was most needy. God knew I needed to experience her transformation with her, and He knew I needed to have some transformation myself. For the 10 days Grace was hospitalized I was there 10 days. I was there when she declined and her lungs filled with fluid. I was there when she had not one, but two weird allergic reactions and had to convince the doctors that, yes, it really was an allergic reaction and they needed to take action (glory to God). I was there singing over her and praying over her and massaging her abdomen to help try to avoid being re-catheterized (ahem). I was there to advocate on her behalf for pain meds (the kind that work), and lay next to her smooshed in a tiny hospital bed because it seemed to matter to her that I was as close as could be. I was there to diagnose thrush (seriously). I was there with her as her mother – but I had once prayed to not be there. I would have missed out on so much.

awake

My point in telling you this is to highlight the very real truth that sometimes we do not get that which we pray hardest for, because it won’t produce that which we need most. We pray for our children to be healthy, or at the very least, have the needs we expect based on our referral information. Of course we pray for that – everyone does! Everyone hopes for a healthy child. For example, how about the classic line before an ultra-sound: “boy or girl, it doesn’t matter as long as they’re healthy. Except it doesn’t always work out that way. Ultrasounds don’t show everything, and neither do referral papers. Many a child has been revealed to have more needs than what was shown on their referral documents – my child had several more.

And yet, nothing that surprises us surprises God. What a comfort that is to me daily, because the truth is that God does allow more than we can handle. We like to believe that God says in scripture, that He won’t give us more than we can handle. It says in Scripture that He won’t allow us to be tempted more than we can bear (1 Corinthians 10:13); but I promise you, He often allows into our lives more than we can handle because if we could “handle” all that comes our way – we wouldn’t need Him very much – would we? (Psalm 68:19). He promises to never leave or forsake us. In the moments when it is too much for me to bear alone, those are the moments when I have no choice but to press into Him and rely on His faithfulness and His strength. I am chronically carried away by waves of fear – but when I look back I so clearly see His providence, His grace, His wisdom, His presence, and His promises fulfilled. There is truly very little I can handle without Him. The truth is that we can only handle the hard things of this life, and become better instead of bitter, because He provides the strength when we need it. He provided it for me, He will provide it for you, too. If He leads you on this journey of adoption you can trust that He will guide you to the child He already knows is your child; and in the moments when it is more than you think you can handle alone, He will carry you through. You can even give it to Him because He does promise to carry us (Isaiah 46:3-4).

daddyholding

I didn’t want to endure open heart surgery with my daughter. I wanted to travel to China and bring home a healed, well, easy child. Perhaps you do too. Let me encourage you that sometimes the very best stories aren’t born from words like: healed, well, easy, or normal. Maybe you are waiting for a referral and hoping for something “easy and repaired”, like I did. Maybe you have your referral and you are waiting to find out an update, hoping that everything in the oh-so-outdated file is “better now” or “fixed”. Maybe you’ve just returned home with a child you expected to have a minor correctable need, only to be surprised with a diagnosis which includes surgeries, procedures, medicines; and now, the picture of what you thought your life would be has been shattered. Whatever your story, you are not alone and if you let Him, God will weave a redemptive story from the seemingly “unanswered” prayers.

foldedhands

Nothing about adoption is easy. Nothing about parenting a child with special needs, medical needs or attachment needs is easy, and most days it’s the attachment needs that scream (quite literally) the loudest. If you, like I and many others before you, are here educating yourself about a variety of needs so that you can navigate your adoption paperwork, a referral, or a new diagnosis; let me encourage you:I knew as much as I needed to know at the time, to say “I will” to our daughter. I’m grateful I didn’t know about all of the things on referral day because, like everyone, I have moments of cowardice and I fear and I could have easily been scared out of one of the most profound blessings of my entire life. Adopting a precious little girl has been a blessing; but even more was growing to know Her creator on a deeper level and trusting His heart and faithfulness in a way I could not have unless He allowed more into my life than I can bear alone.

thumbsup


“He tends His flock like a shepherd; He gathers His lambs in His arms and carries them close to His heart; He gently leads those that have young”
— Isaiah 40:11

 

 

Surviving Gotcha Day

May 7, 2014 by Amy 4 Comments

A year ago today we had spent only one day with our daughter. After arriving in China, we spent 3 days in Beijing, visited the place she called Home for almost a year and met the women she called “mama”. Then we traveled to XinJiang, her province, tried to sleep on Gotcha Day Eve, and made our way to the Civil Affairs office in Urumqi on a sunny Monday morning. I had seen dozens of gotcha day photos and videos prior to our day; first moments of forever families in the lobbies of hotels, in front of gold or red words indicating a government office, and others in rooms filled with soon-to-be parents holding their breath. All of that giving way to tears in the moment they finally see their child face to face.

That isn’t what our day looked like. At all.

It just so happened that one of the miracles that occurred on Gotcha Day was that we were fifteen minutes early for our Civil Affairs appointment. In fact we were so early, the office wasn’t even open yet so we waited inside the van with our guide. After a few minutes our guide looked our the window and said, “I think your baby just arrived”. Narrowly avoiding whiplash, I spun my head around in an instant, looked to the end of the lot near the alley, to see a Chinese woman holding a small child.

I vaguely remember scrambling and scurrying to get out of the van. It was as if my very life hung in the balance if even an additional two seconds dared to come between me and my child. Once outside the van we saw them only about 50 yards away. After all this time of waiting, paper-pushing, planning, and travel – it really was her, all bundled up in a zebra-print fleece sleeper, followed by a fleece jacket with hearts, and pink stretchy hat.

For the year and three months prior I imagined what this day would be like. I had decided to casually walk into the building where our child would be waiting, breathing evenly and smiling as we rode the elevator up to meet our daughter. I imagined waiting in a room with other adoptive families, near bursting with excitement. Finally the door would open. I wondered if our baby would be first. I had every intention of remaining calm when I finally laid eyes on her so that I wouldn’t scare her or smother her with all of my pent up affection. I was certain I would remember every learned psychological reason to let her come to us in her time and woo her into my arms slowly and gently. I resolved to resist dumping my mothering all over her because she will be the only person among us who doesn’t know that I am her mother, and what feels like organized borderline kidnapping is legit.

Can you even imagine?

Somehow we made our way to her. A small gang of white people accompanied by one Chinese translator. I don’t remember my feet touching the ground. It would not surprise me one bit if there was video evidence of me taking flight from the van to the spot where she stood with the woman who brought her. I remember being in front of her, my eyes locked on her face, my smile reaching my ears, whole body shaking, and my eyebrows into my hairline as I barely squeaked out, “Hi Grace! Hi baby”

…and the next thing I knew she was thrust into my arms by this sweet smiling woman, “Here is your baby!”

Gotcha

Then came the crying. The panic. The screaming and the blue lips, fingers, and toes.

We were in an alley, in the sunshine, surrounded by noisy traffic and a screaming cyanotic baby who had just been released from the hospital with pneumonia; and I could barely absorb that this child I had loved for almost a year – 5 of those months loving her as our daughter – was at last in my arms. I knew to expect her to cry because we were strangers. We didn’t look like people she was used to seeing, we didn’t smell like people she was used to smelling. We were all together different and unfamiliar. For the first time I heard her cry, panicked and distraught and then it turned into a scream. I still hear it when I remember that day. I hear her rattling, congested attempts at breathing, her tattered lungs from infection after infection after infection. I smelled the sweet but herbal scent of medicine. I see a terrified, traumatized, sick, confused, and oh so tiny 19 month-old. She was absolutely beside herself – and so was I. We were both terrified. She was afraid because she was losing everything she knew to be hers – and I was afraid that I was about to lose the daughter I just met but already so loved.

We had fear in common that day. We have fear in common a lot of days. The woman who handed her to me was from the orphanage that had not been home to Grace for almost a year. There was little to no chance of a relationship between them; and yet she clung to her as if she was her birthmother. Grace was desperate to be in her arms and once she turned a deeper shade of blue – I handed her back briefly to recover, for us both to recover. As she held Grace and tried to comfort her immediately Grace settled and stopped crying listening quietly as the woman said: “Why do you cry? This is your Mama and Daddy. It’s going to be ok” – all in Chinese.

confort

Those moments were loaded both with terror and joy intermixed in the strangest way. Somewhere inside my soul was crying out and begging God to comfort her in ways I couldn’t and be what she needed until we could be, until I could be. Praying through the business of adopting and red fingerprint signatures, that He who created her heart would keep her broken heart stable through it all. In those first moments I was begging God that she would calm and survive this trauma, this necessary trauma. She is the only one who didn’t know this was the worst moment giving way to the best moments of her life. Her noisy breathing scared us all, but she was breathing. I wouldn’t be surprised if I didn’t breathe at all in those first moments with Grace.

Alloncouch

Once we arrived to the civil affairs room in a tiny office with a desk and a couch the orphanage worker handed her back to us and the crying began again. We pulled out her bear from the foster home. No reaction. We pulled out toys and books. She didn’t care. Our teenaged daughter pulled out her ipad and the crying finally subsided. Flash card after flash card of pictures that she would recognize as babies or toys or fruits provided a common ground and she slowly began to accept us; a little bit here and a little bit there. I don’t even know if she accepted us in those moments, or tolerated our presence in order to have access to the ipad, to tell you the truth. I didn’t care what the reason. It was a start. It was the beginning, it was a step. After a very long day of steps forward and back and forward again, we returned to our hotel, a family of 5. We each survived Gotcha Day, and the days and weeks after.

sleeping

Families begin in many different ways, don’t they? Some bathed in joy and answered prayer and others bathed in scary circumstances, hard hours, tragedy and life changing loss. I want to be a truth teller of adoption. I want to be a voice that says: It’s not always shiny and bright on Gotcha Day: hour one. It’s not always shiny and bright at the airport when you come home, or the first Christmas, or on day 366. But I’m here to tell you that if it cannot be shiny and bright, it can still be precious and treasured and beautiful in it’s own way. In 366 days we have had our share of ups and downs, good days and hard days, moments when the joy is so overwhelming we can hardly stand it, and moments when it’s so much harder than we imagined or expected.

tears

That’s life. That’s earth. That’s the truth. It’s true about marriage, and biological children. It’s true about jobs and education, and aging parents. It’s true in times of tragic loss, and precious births, in answered prayer and funeral services. The things we live through that are the hardest, still hold opportunities for Joy. They can and often do produce treasured memories and reminders that we really can endure and heal from things that once seemed impossible.

One of the most healing things we can do for each other as we live our lives on this earth through joy and through hard things is to tell each other the truths about the hard things as much as we emphasize the joy. There’s power in admitting when things don’t always play out as they do in our imaginations. There’s comfort in a brave voice admitting, “Me too”. There’s healing in a hand resting on your shoulder that says, “I’ve been where you are and I know how it feels.”

snuggle

366 days later, by God’s grace, our Grace is thriving. Perfectly pink fingers, toes, and lips and a heart that beats beautifully. She is attaching and bonding with family and friends. She is spunky, and affectionate. She is sassy and adequately able to defend herself (ahem). She is curious and clever and so very brave. She is an over-comer, a survivor, a warrior princess who wears her battle scar with honor and pride because she is first the daughter of the King of Kings and He brought her a family who loves her like crazy. Then He brought about healing and continues to transform her daily restoring beauty from the ashes of her loss. I doubt she has vivid memories of those first hours of our new family so I will keep them alive for her so that one day she will know what I know – In the first moments there was pain and there were tears – just like every time a baby meets their Mama face to face.

In the first moments it was scary – because she was already so loved and so desperately wanted.
In the first moments it was hard to breathe for all of us – just like when her big brother and sister were born.
In the first moments, just as He does today, God was there bringing calm to each of our souls, healing to our fears, and bonding us so deeply that 366 days later it seems like it’s always been the 5 of us.

It’s not always shiny and bright on Gotcha Day. Sometimes the most beautiful part of Gotcha Day is the healing that comes in the 366 days of that first year.

shesmine

Healing is a beautiful thing to celebrate.

 

 

“but it said repaired”

April 7, 2014 by Amy 0 Comments

I vividly remember reading our referral paperwork. I remember first reading the descriptions of her developmental milestones and evaluated her development through mom and teacher goggles… “she follows objects… she is tracking… she is grasping things… she is babbling and forming simple sounds… she turns her head when there is a noise… she can hear noises… she sleeps through the night… she eats biscuits… she laughs… she cries when seeing strangers… she is loved by her nanny.”

XIN QIU MIN pic 1

I remember pouring through the detailed medical information. Everything from head circumference to congenital heart defect to precisely where they made the incision for her repaired tracheo-esophageal fistula. I read about when it was done, where it was done, exam notes from while she was hospitalized, and discharge notes for her prognosis.

I can’t say if every referral file is as detailed as ours was, but it seemed to be ridiculously detailed. I felt like I knew more about this child, this daughter I loved but had not met – than I knew about the children I gave birth to! Pages upon pages of information gave me insight into her past, present, and hope for her future. It is a treasure to me now even more than it was then because it’s her story before we joined her life. It’s all I have to fill in the missing pieces, and yet even as we returned home there there was much more to be learned.

XIN QIU MIN pic 2

I remember mentally checking off the Tracheo-esophageal Fistula (TEF) as “complete”, a “non-issue”, thinking “We need not worry ourselves about that because – (hallelujah) – it has been repaired”. And it was repaired. It was repaired “with excellence and precision”, we would later be told by specialists here. Grace was three weeks old at the time of repair because that is a repair that has to come very quickly in order to survive. At the time she was found, this TEF – this connection between her trachea and esophagus, allowed whatever she drank to be shared by her esophagus and her trachea.

The esophagus leads to her stomach. The trachea leads to her lungs. Fluid should’t go to the lungs because that’ll make you very sick. The connection, the fistula, was removed and the places where it was attached were closed. You would think that would be the end of that special need. The file said, “Repaired”. Sometimes repairs leave evidence that there was a problem. Sometimes healing produces scar tissue and sometimes in order to fix one thing – you inevitably create new challenges.

XIN QIU MIN pic 3

So it goes with a TEF repair. Once repaired the trachea becomes compromised. It still functions but in most cases becomes “floppy” or is diagnosed as “tracheo-malacia”. When we met Grace she sounded cross between a sick seal, a babbling brook, and a veteran smoker in crisis. She was recovering from yet another bout of pneumonia but it was more than that. She was so very noisy. Noisy when she breathed, noisy when she laughed, noisy when she slept, and noisy when she ate. Leaving the less-than-
healthy China-air behind was probably the best medicine for her second only to her heart surgery.

Having a floppy trachea makes her more susceptible to infection. Things that should be easily expelled from our trachea isn’t always so easy for Grace, but – I hardly notice any noise any more; because there hardly is any noise any more. As she grows (and she’s growing) it is expected to improve and for as susceptible as she is to infection, she had only one in 11 months of being in the US. That is record-breaking for our little Grace. She is definitely one who defies the odds.

Gbath14-1769

The esophagus on the other hand, is both friend and foe and we do battle daily. Meals are the most difficult time of the day because at 2 1/2 little miss thing wants to eat what we eat. She wants to feed herself the way we feed ourselves. She longs for independence in the area of self-feeding, and we can not fully give her that independence. Her esophagus narrows where her repair was. There is scar tissue, and while it isn’t narrow enough to dilate (according to our specialist) it’s narrow enough to make eating a challenge in this season of life. Foods like yogurt, apple sauce, crunchy crackers that she knows to chew well, toast with a very thin layer of peanut butter or cream cheese, and some soups, are our go-to foods. Normal toddler foods like any kind of meaty nugget, cut up fresh fruits or veggies, some cooked veggies, any potato product, bread, pasta, and any kind of mixed texture is risky for Grace. Choking happens in the trachea – so I don’t call what happens to Grace choking, but it’s similar. Food gets stuck. It gets stuck at the point of her narrowing and one of two things happens:

1.) what goes down comes back up (sometimes not right away)
2.) what goes down eventually….goes down.

In addition to the narrow point, there’s a second consequence from her repair. In you and I, the esophagus has a chain of nerves that squeezes food down in a rhythmic contraction of muscles called peristalsis. When that chain of nerves was interrupted during Grace’s TEF repair their function became limited. We don’t know how limited, we don’t know if the function will return aside from a heavenly healing; but we do know that once passed the point of her repair – we rely on gravity rather than her esophagus to move the food into her stomach. There is evidence of reflux at the bottom of her esophagus which she may or may not feel depending on the degree of nerve damage, so she is currently on a twice a day dose of liquid randitidine (generic Zantac). Will it always be this way? Only God knows. Nothing is impossible for Him so we pray often for healing. As she grows, though, and discoveres what we veteran eaters know to be true: 1. Take small bites. 2. Chew food well. 3. Swallow small bits at a time. 4. Take a drink to help move things a long – things will naturally be easier for her.

We monitor her closely at meal times but despite our best efforts there have been many scary moments, and yet it’s very manageable. It’s nothing we can’t handle and there has been noticeable improvement since we met almost 11 months ago, and for that we are thankful.

Thanksgiving-13-9530

From what I have learned over these months, it is uncommon for post-TEF-repair patients in China to be flagged for tracheo-malacia and esophageal narrowing and reflux. Here in the US it’s expected. Our and ENT specialist both said, “of course she has these two issues, all post TEF kids do”. The funny thing is, that when you accept the referral of a child and you know they’re yours, very little on the referral information can change your heart. That is our story. Grace could have had a third eyeball, and eight legs and nothing would have kept her from my arms. It can, however, throw you for a loop when you believe that there isn’t an issue or a challenge or a significant diagnosis when in fact there are two or three, or more. Her heart defect was doing such a number on her tiny body that after traveling with a cyanotic baby and hurrying to open heart surgery it distracted us all and gave us the perspective of what is really hard and what isn’t. Caring for a cyanotic baby was hard. Watching her slump over mid-TET spell – was terrifying. Once that was over, if all I had to do was make sure she eats safely? – I’m good with that. Praise Jesus! I’ll gladly trade one critical need for two needs we can live with.

Perspective is very effective at pointing you to where you need to soak in thankfulness. Would I encourage a family to accept the referral of a child with post-TEF-repair? Absolutely and without question. It is a very manageable special need. I would strongly encourage them to read about tracheo-malacia and stenosis (narrowing) of the esophagus; and learn how to choose and prepare safe foods for their toddler to eat so they can be as independent as possible because independence is important.

Referral information is valuable, it is important to share it with experts who will do their best to prepare you to parent and care for your child. As with our biological children, we can never be truly prepared for everything. Even fifteen pages of referral documents doesn’t cover everything. It left out some important details, some of them challenging and some of them wonderfully surprising.

What the referral information didn’t tell me was what a little 22 lb. fighter we have in Grace. I didn’t expect her to be strong. She is very strong. I didn’t expect her to be brave, but she is that too. I didn’t expect all that she has endured between being found to surgeries to hospitalizations, transitioning from orphanage to foster home, and more hospitalizations. The life changing experience of adoption and heart surgery has each shaped her into such a fierce, yet little pint sized girl. I can’t help but wonder about all that she has endured and all she has survived without me, and all that she has overcome without a family. I see glimpses of how it has shaped her personality and still affects her behavior and I’m reminded again and again what a miracle she is. Sometimes even miracles need a chance. All she needed was a family, a home, medical care and love. There is no telling what will come from giving a child like Grace a chance. For us, this miracle of adoption all began with two words:

I will.

grace2.5-1819

 

 

TEF, TOF, and VACTERL, oh my

March 7, 2014 by nohandsbutours 4 Comments

Don’t you love those acronyms? I have come to really appreciate the time they save, the space they save, and that I can safely dodge oodles of mispronunciation. For example, until 2012 those letter sequences meant nothing to me. If someone would have told me years ago how much I would come to know about their meaning I would have laughed. I would have laughed a lot, and then I would have freaked. out. As I write this, it occurs to me that it might look as though I ripped my information from a medical journal. Rest assured, this all came spilling out of my brain and heart. If there was a site or a journal to credit I would. Perhaps some of you parents can relate. If you have a child with acronyms in their medical file – you tend to know stuff. You tend to become an expert about those acronyms, about what they stand for, what procedures are required to treat and diagnose and repair. I can hardly remember what I walk into Target for on any given day, but if someone asks me what TOF means I will promptly spew forth so much information in a matter of seconds that I hardly recognize myself.

Moms of kids with acronyms unite!

We brought home our daughter Grace, from China in May of 2013. You can read all about our miracle girl at our blog. We started our journey to Grace in January of 2012, and it has been quite the adventure. I’m forever in awe of how God knit us together as a family. We went from a family of four with zero “special needs” to a family of 5 with a bunch. There were scary times, scary terms, scary travel with a cyanotic baby, and scary surgery (all kinds of scary) – but for all of the scary we have survived together it’s in the top 5 all time favorite seasons of our life as a family – for sure. I have learned a lot as a mom of a child with multiple congenital defects and I am passionate about sharing what I’ve learned because sometimes acronyms can scare you right out of someone amazing and I cannot imagine my life without our daughter, acronyms and all.

family

TEF: Tracheo-esophageal Fistula: A congenital (born with) defect where the trachea (breathing tube) and esophagus (food to stomach tube) are connected. A baby born with this defect will get very sick fast since half of what they drink goes to their stomach and the other half the aspirate into their lungs through the trachea.

Grace was born with this, I’m sure it is why she was extremely sick when she was found at approximately one week old. She was immediately hospitalized and had the TEF repair surgery at three weeks old. She also had a raging case of pneumonia among other things. When this necessary and time sensitive repair is done (removing the connection between the trachea and esophagus that are meant to be close but separate) there is inevitable damage to both the trachea and the esophagus. The trachea, which should grow and become more rigid with age is left with a bit of scar tissue at the repair site. This almost always leaves the trachea “floppy” which makes for several challenges and concerns: it’s noisy, its a trap for bacteria and things that shouldn’t be in the trachea, it can easily become irritated, it can (in severe cases) fold in on itself cutting off air supply. Next door, the esophagus is also left with some scar tissue, which can and often does cause stenosis or narrowing of the esophagus. When this happens and you’re on a liquid diet it’s hardly, if ever, noticeable. When you begin to introduce solid food, it’s inevitable that unless you are very carefully taking and thoroughly chewing small bites of food, and following it up with a drink of something, what you swallow will get stuck. It’s not choking (choking happens in the trachea) it’s that feeling that there’s too much in there and it will either have to make it’s way down – or come back up.

The second result of the esophagus repair is how it affects the chain of nerves that make the esophagus squeeze food to the stomach in a matter of seconds (peristalsis). When that series of nerves is interrupted – the esophagus cannot function the way it should. It might have some function – but truly gravity is doing most of the work to bring the food into the stomach. We knew Grace had the repair. We did not know until after we were home all that the repair had created. It is very manageable in her case. We closely monitor what she eats and as she’s growing she is learning to drink between swallows and chew well. There is a ton of progress in her eating and swallowing since we brought her home.

TOF: Tetralogy of Fallot: This is one of the most common congenital heart defects (CHD). There are four defects that are accounted for in TOF, but two are necessary to be repaired and the others you live with. One of the two that must be repaired is a Ventricle Septal Defect (VSD) which is an opening between the ventricles. This allows oxygenated and deoxygenated blood to mix before entering the body, resulting in insufficient oxygen saturation throughout the body. The other repaired defect is a poorly or non functioning pulmonary valve.

When we met Grace in China her oxygen saturation on a good day was in the 70’s. When she was upset, terrified, or crying they would drop into the 50’s. At 19 months old she was 16 pounds and had blueish gray finger tips and toes and sometimes lips, she was cyanotic. Her overall color had a grayness to it.

preop

Her body had adapted to her condition to survive in this way but the older you get and the bigger you get, the more oxygen you need, the harder your heart works. Her heart was enlarged and when she laid down there was a noticeable difference in her rib cage from where her heart was larger than it should be. The doctors in China were ready and waiting for months to operate but she was chronically sick with pneumonia. She had a chance once and spent over a week in the hospital preparing for surgery but the noise in her trachea was concerning and they refused to operate. I’m so glad they did. We traveled to and from China with a portable oxygen concentrator (POC) that helped some when she was especially cyanotic.

We returned home from China on May 19, 2013 and on June 21, 2013 we got to be her family when she went from blue to pink and her oxygen saturation read 99%.

postop

pink fingers

Grace and mama hospital

It was a glorious glorious day and we praise God for how He brought about healing in her tiny body at just the right time. Today I’m happy to say that in the almost 10 months since we have had Grace as our own, she has only had three colds (after 19 months of chronic pneumonia) and her cardiac function is great. It’s not even a part of our daily life any longer, other than her “battle scar” reminding us that she is a walking miracle.

VACTREL:
V: Vertebral anomaly (congenital scoliosis for example)
A: Anal (anal atresia or some other type of malformation in that area)
C: Cardiac (congenital heart defect)
T: Trachea (tracheoesophageal fistula)
E: Esophagus (esophageal atresia)
R: Renal (kidney abnormalities)
L: Limb (defects in legs, arms, hands, feet)

When you receive medical information with a referral for an adoption, most agencies if not all agencies suggest (and some require) that you submit that information to “International Adoption Clinic” where doctors are familiar with looking through referrals carefully and giving you a clearer picture of what needs are diagnosed. When we received our response from the international adoption clinic in Minneapolis we were very well educated in what to expect from the cardiac defect, and the TEF repair was explained. What I didn’t know anything about was the suggestion of “VACTERL association”. Even in all of my researching of medical conditions while we were paper-pregnant I had never come across that term.

VACTERL is a collection of congenital defects that often are associated. For example, after returning home we met with a genetic counselor who explained that while there’s nothing really to be done for VACTERL association – it’s a map and fits a fairly common pattern for other potential anomalies that may not have presented in a child yet. If a child presents with two or more congenital defects it is often recommended that the other systems within the VACTERL association be examined as well. One
doesn’t have to have every letter accounted for to be considered someone with VACTERL association but more than 2 suggests a possibility.

At the time of referral, I didn’t think much of it. I researched it, I was prepared to have our docs look into it upon returning home and I brought it up to every specialist we have seen. All agree she fits the pattern – especially when she was diagnosed with congenital scoliosis due to a hemi-vertebrae (a uniquely formed vertebrae which sets everything above and below it a bit curvy. She doesn’t have anal atresia, no obvious limb defects, but she was born with hydronephrosis (one kidney larger than the other) which has since resolved. She may have a tethered spinal cord but shows no symptoms currently (which is a post for another day… perhaps April).

scoliosis

Sometimes it’s comforting, in an odd, way to have a pattern that makes some sense, you know? It has been noted, and docs nod and say – “yes she fits, so we will look into other things to make sure there’s nothing we are missing”.

*gasp*

…Good heavens… What else could be missing?? Sometimes, I have to look back and remind myself she was created, I believe, this way on purpose.

“For you created my inmost being; you knit me together in my mother’s womb. I praise you because I am fearfully and wonderfully made; your works are wonderful. I know that full well. My frame was not hidden from you when I was made in the secret place; when I was woven together in the depths of the earth your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be. How precious to me are your thoughts, God! How vast is the sum of them! Were I to count them they would outnumber the grains of the sand. When I awake I am still with you.” — Psalm 139:13-18

Grace gymnastics

What do you tell a child born with multiple defects why they were created “like that.” The same thing you tell a child who was created with one – or none. You tell them Psalm 139:13-18. You tell them they were fearfully and wonderfully knit together by a God who has ordained each one of their days, and that nothing is hidden from God even though it’s sometimes hidden from us, and that nothing surprises God, even though it might surprise us. We brought a child home with known congenital defects – and we brought that same child home with even more unknown congenital defects. We were surprised by some, but God wasn’t surprised by a single one. We either believe that or we don’t, and I believe it as much as I will believe that the sun will rise tomorrow. I don’t know why a good God creates some people with no “defects” and others with several, but I believe He is good. I have seen how the hard things in Grace’s life have not just been redeemed but have been used for good. I have seen time and time again the miracles that occur in people with congenital defects, the healing that doesn’t make sense to the experts, the children who out live the odds, and that is precious and rare to behold. The reality is, we live in a world where bad things happen that we can’t explain, can’t prevent, and through no fault of our own – exist. It’s what we do in those moments, and how we live with those things. That is what defines us – not the “defect”.

The “defect” never defines us. The “defects” never define the child. The acronyms, the medicines, the scars, the prognosis – must not define our children and it must not define our life.

Grace and mama

What if we would have known it all ahead of time? If you read our story to Grace you’ll know it was far too late to say no. By God’s grace, and through no effort of ours, we were matched with the one child we already so loved. She could have had two heads and we would have brought her home. What if before that we would have said “no…defects are too scary…acronyms are too hard…she will need surgery(s)? I can’t watch a child suffer like that…” What if we had said no to it all at the very beginning. I shudder to think of all we would have missed out on. I spend my days with the most beautifully, spunky, energetic, loving, hilariously sassy, independent, brilliant, adorable Chinese girl with more “defects” than I can count on one hand.

I wouldn’t change one thing.



the greatest special need of all

February 7, 2014 by nohandsbutours 7 Comments

Welcome to Amy, mom to Grace adopted from China 8 months ago, and our newest contributor at No Hands But Ours. Amy blogs at Stops Along the Journey.

Special needs.

We hear those words so often in so many places; schools, adoption agencies, the work place, fast food restaurants, and facebook. Adoptive parents who choose to love and seek after and bring home a child diagnosed as having “special needs” are inundated with all sorts of language and ideas and methods to succeed at parenting a child who has “special needs”.

I remember searching this website for answers on what different “special needs” meant. Everything from blood disorders to orthopedic issues to cardiac defects. Many words linked to blogs linked to stories of family after family who was living with “special needs” and how they managed to live with them and in spite of them. I would go from this site to our medical check list of what we would “accept” and sometimes things I assumed were scary turned out to seem not so scary after reading about them on this site. I am forever grateful.

I remember checking the line for “cardiac defects”, “GI defects”, “blood disorders”…imagining what it would be like to morph from a family with zero “special needs” into a family with them. Unknown special needs, in fact. What if there was more than one…more than two…good heavens – more than three? No…that would be too much to handle. I could never be that mom. I don’t have what it takes to be that mom.

Today I am that mom. Today our youngest daughter, home just 8 months exactly, has rocked our non-special-needs family into one with special needs galore. Although, it’s not how I imagined special needs to look. At all.

GD-1030010

Her medical information listed: tetralogy of fallot, repaired tracheo-esophageal fistula, possible hyrdonephrosis, and hospitalizations for chronic pneumonia. As we researched these “special needs” we felt confident this was something we could handle, help heal, and provide for. Today those special needs aren’t really part of our daily life; not really. Her heart is repaired and has been for 6 months. We monitor how fast she eats and what she eats because her esophagus isn’t as efficient as it should be. Her kidneys are normal. The needs we discovered after meeting her are barely noticeable as well. Her crooked spine has improved some and her tracheomalacia (a result of her repaired fistula) is unnoticeable most days.

There is one special need, however that is noticeable most days. No doctor can prescribe a procedure or a prescription to heal or to help. It wasn’t listed in her referral information, nor is it something you would notice in a photo or physical exam.

There isn’t a school, or drug or teacher that will be of help, and there isn’t anything I can do to speed along the healing.

GD-1030006

The need to feel attached, secure, loved…those are the special needs we notice always with Grace. They surface in the first waking moments. They are revealed when I leave her side at times to throw something in the garbage or use the bathroom. They color the way we do nap-times and bedtimes and doctor visits. They are displayed in the joy she feels when all of our family is together in the same room and no one is missing. They are obvious in the middle of the night when she wakes and cries and instantly relaxes at the warmth of her hand in mine. The process of attaching isn’t complete once your plane arrives or six or twelve months later. There is no alarm to sound when the magic number of days have come and gone. There’s no graduation day, completion ceremony or degree. It may be a life long process with continuous testing even after we think “we’re good”.

We read about it, we studied it, we did the work and imagined the scenarios and grieved over the reasons, the many reasons why children like Grace, live with this “special need”. It’s the part of adoption that we work at long after the paperwork we completed has expired and long after we are home and unpacked. Years of gotcha day anniversaries later we will look back and remember how far we have come. I look back after 8 months and marvel at how she panics less when she wakes from a nap alone in her room. I give thanks and praise when I can go use the bathroom alone because she isn’t a puddle of tears on the ground in the fetal position after I walk ten feet from her into the bathroom. It is a marathon, not a sprint and every mile of this marathon is sprinkled with victories to be won.

Why? Why is it that these children we have sought after, fought to bring home, wanted and traveled the world for test and question our love and loyalty and devotion? I don’t know; but then again I’ve never been abandoned. I’ve never dealt with chronic loss. How many times was she abandoned? On paper – once. In her reality – dozens and dozens of times. Every time she lay in hospital bed, left in a room alone and strapped to a bed, perhaps just when she was used to one nurse there was an inevitable shift change and it translated to loss. How about the time she was left with a stranger only to a few hours later be given to new strangers, us. Strangers who hugged her and love her like crazy… only she wonders if we might leave her too.

Thanksgiving-13-9594

Attachment might be the greatest special need of all; and the most challenging need to meet because to us, it doesn’t always make sense, and it isn’t always convenient. You won’t find it on your referral paperwork when you adopt, but make no mistake – it’s there. The signs of attachment, the progress, the celebrations of smiles where there used to be tears and peace where there once was fear…there’s nothing quite like it. We are not alone in this process. The Healer, the Great Healer promises to equip us for every good work. Our daughter came to us with a very broken physical heart, but as it turns out – that was only a minor and short-term special need. Healing her emotionally broken heart, teaching her to trust and love with reckless abandon and security is a life long special need and one we work at every day.

Thanksgiving-13-9709

It is so worth it, it is such a privilege to be the one who will never leave her.

It’s an amazing honor to be the one who gets to teach her to trust, to love, and to be secure in the love of her family and most importantly – her Creator. What an amazing work He does in the hearts of His children. He heals what is broken, He even knows the stars by name, He is almighty, and He understands.

Thanksgiving-13-9587

“He heals the brokenhearted And binds up their wounds. He counts the number of the stars; He calls them all by name. Great is our Lord, and mighty in power; His understanding is infinite.” — Psalm 147:3-5



Moriah

March 21, 2009 by nohandsbutours 0 Comments

by Amy, mother to Moriah from China with scoliosis, kyphosis, and cerebral atrophy

Our three bio children were 9, 5, and 3 when we began our adoption journey in February, 2006. We submitted an application for a NSN girl under twelve months of age. As time went on the wait increased, we discussed submitting a special needs checklist. We were living far from family and had a limited support system, so the timing just didn’t seem right. We continued to wait. Finally, in November 2007, we updated our homestudy and decided to submit a special needs checklist. Between the time that we began our homestudy and this update, we had moved close to both of our families. The time seemed right because we knew we would have a lot of support. It was hard to know which items to check. We struggled over many of them. Looking back, I am thankful that God knew exactly which special needs our special girl would have and He was brining us together.

We got the call on June 24, 2008. It was my youngest son’s birthday. “Would you like to look at the file for a little girl?” Pam asked. She mentioned her special needs: heart problem, thumb/wrist issue and cerebral atrophy. The last one really caught my attention. “What does that mean?” I asked. She wasn’t sure. The kids and I ran upstairs to open the e-mail. Staring at us was a very bundled little girl who looked a little stunned. We thought she was beautiful. I immediately called my husband and forwarded the e-mail to him. After he looked at it, I could hear him telling those around him, “Do you want to see a picture of my little girl?” We consulted several doctors, but her medical diagnosis remained fairly vague. I wavered. My husband held firm. He knew this was our daughter.

We guessed that she was in foster care because of the background of the pictures. And later learned that she was sponsored by Love Without Boundaries. Just before we came for her, she spent some time at the Swallow’s Nest, which was also a wonderful foster care situation. What a blessing she received as she was loved and cared for in these homes!

We traveled to China in September and met Zheng Mei in our hotel room in Zhengzhou, Henan. She was 19 months old. She was tiny and so beautiful. She had been asleep on the ride from the orphanage to us and looked sleepy and dazed. She went to us willingly but was very still and quiet for the first day. Slowly she warmed up and we began to see her personality. I remember watching her sleep in our hotel room and feeling amazed that this beautiful Chinese girl was really ours!

Back at home, we saw doctor after doctor. Her heart, it turns out, has healed itself. But new MRI’s revealed that she does indeed have some cerebral atrophy. There is also evidence of some kind of trauma to her head. We don’t know how it happened or what it means for her development. We will love her and stimulate her in every way we can and know that even this was part of God’s plan for her. She does have some trouble with her right thumb. It is placed on her hand in a way that limits some of its function. OT has helped quite a bit. She uses it a lot now and I am confident that it won’t cause her any significant problems in her life. Interestingly, The MRI also revealed some significant issues with her back. Earlier this month, she had surgery to release a tethered cord. Some of her vertebrae are not correctly formed which is causing curvature of her spine. For now, we will watch how this progresses with frequent x-rays. It is interesting that her most significant medical issue was completely undiagnosed in China. And what seemed significant in her paperwork is not an issue.

Sometimes I think about how we would still be waiting if we hadn’t submitted that checklist. And we wouldn’t have this spunky, funny, cuddly little girl in our home. The Lord knew the plans he had for Moriah and for us, and we are so thankful for her. She is a joy to all of us. We would definitely encourage others to consider children with special needs. As several have expressed here, her greatest need was for a mom and dad. There are so many special children with needs that would be really life altering in China, but are quite treatable and manageable here. We are humbled to have been entrusted with this precious little one.

You can follow our adventure here.