Knit Together

October 13, 2016 Amy, complex heart defect, Heart System, kyphosis, scoliosis, surgery, Tetralogy of Fallot, tracheo-malacia, tracheoesophagel fistula 5 Comments

“I am fearfully and wonderfully made. Your eyes saw my unformed body when I was knit together in my mother’s womb.” – Psalm 139

I can count on two hands the physical diagnoses our little Chinese warrior princess has in her medical history:

tetralogy of Fallot (repaired)
tracheoesophageal fistula (repaired)
stricture of esophagus
tracheomalacia
chronic lung disease
severe pulmonary insufficiency
reactive airway disease
congenital scoliosis
congenital kyphosis
hemivertebrae
esophagitis
acid Reflux
enteric duplication cyst
(I feel like I’m forgetting something)


amy1


We only knew about the first two at the time we accepted her referral. Her scoliosis and kyphosis was obvious when we gave her a bath for the first time in China. A congenital differently-shaped vertebrae (aka hemivertebrae) causes her spine to curve one way north and the other way south. Because those two vertebrae are triangular shaped rather than butterfly shaped, there is little chance it would straighten out with a brace and, unless it gets infinitely worse, there probably won’t be surgery.

However, I’ve seen God work in amazing ways in our little one and in our family with her adoption so I have prayed many times that He who moves mountains would also make the “crooked places straight” and heal her in ways only He can. When I look at the list above it’s startling even though I could tell you about every single item and sound like a wikipedia link or a medical journal.

I wish I didn’t know so much sometimes.

People often ask if “we knew” about her health challenges before adopting her. Thank God, we only knew about the first two. I realize that to some that sounds like crazy talk. People always research and check consumer reports and try diligently to make an informed decision. Had I known about all of the things we may have been too scared, or too logical, too something and we could have missed out on her. Lots of people would have missed out on her. She is amazing.

She. Is. Amazing.

If you met our Grace, you would never know any of those medical terms were part of her story – unless she was getting out of a bathtub and you saw her scars, or her curvy spine.

We’ve only adopted once. I won’t say it’s the first and last time because 10 years ago I wouldn’t have thought we would have one adopted daughter in our house; so I’ve learned to never say never. Our hearts are full and our days are busy and while some who have twice or thrice as many children under their roof might think – “You only have three!”

Sometimes, in different seasons of life three weighs more than six.

Our older two children had no known special needs. They are, to this day, healthy… normal… with most of their medical record consisting of well-child visits. We had never used the word “congenital” before adopting Grace. I had not considered that a genetic clinic was a place I would ever visit, never-mind wait for a result (which was rather uneventful).

We had spent a total of one night in a hospital with our birth children after bringing them home from the hospital. One. We had day surgery for tonsils and adenoids and I remember thinking at the time that it was so hard. That entire half hour of anesthesia and surgery just about did me in many years ago. We only know what we experience and our perspectives are based on what we have endured and survived. I’m sure some people think enduring open heart surgery is amazing. At the time it was just what had to be done and – because it saved her life – I could hardly wait for surgery day. When they took her back, I felt like my heart was in a million pieces.

Heart surgery is hard. Bypass is hard. Handing over your child to surgery is excruciating. It felt like I wasn’t even present in my own body while waiting in the waiting room… and this was for my adopted child. To those who wonder if it’s easier with an adopted child – I cannot imagine it being any more difficult than it was. It didn’t matter that we don’t share DNA or look alike. We were already family in every way that mattered. We both survived that day and the ten days after, and looking back, I don’t even know that version of myself any more. That version of me was much braver than the me I am today in some ways. I feel like I spent all my bravery sometimes.


surgery


We have been with Grace for almost three and a half years already, and what came easy for us with our birth children we have more than made up for with Grace. It turns out that we thought our first children were normal, but they were on the extraordinarily healthy side of normal. Grace is on a different scale altogether. She appears to be on the extraordinary side of chronically ill, for which I am ever grateful. We often forget all of her needs because in the day to day – her needs are mostly invisible.

While her medical challenges are many, she is spunky and silly and smart. She is persistent, abounds in energy, loves fiercely, and she is a warrior. Her rough start at life shapes her behaviors and makes her sensitive, prone to anxiety, and hesitant to trust. Her congenital anomalies (because I prefer the word anomaly to birth defect(s)) are significant; as are the repercussions from surgeries, and from not having heart surgery sooner in life.

We went from answering n/a on health questionnaires to a list with paragraph explanations and Wikipedia links. Maybe you can relate. Maybe it’s what you’re afraid of. Maybe you’re in the paper chasing place of adoption and checking boxes of what you will accept and what is too much. Maybe you’re checking every box; or maybe you are checking and erasing, and checking again. Maybe you feel guilty for not checking more boxes because the faces of children who need a family haunt you… I get that. They haunt me too.

Almost year ago we were at our Children’s Hospital for an EGD with dilation of esophagus with Grace. Her narrow esophagus made meals scary because food often got stuck. Normal toddler foods were dangerous for almost three years. Eventually, the dilations were life changing for her and for us. Over time it made quite a difference and meal times are now less scary.

During an EGD last November we learned then that she had something called an antral web, which was described to us as thin membrane partially covering the opening to her small intestine from her stomach. They planned to watch it since she had no symptoms of it being a problem. At the time Grace also had thrush/candida present in her esophagus, which isn’t uncommon for children with daily inhaled steroids, and her esophagitis was significant. We changed her acid reflux medicine, added an anti-fungal for the thrush, and five months later this past April we were back for another EGD with dilation. At that visit, we saw more pictures of the antral web, which was subsequently dilated and it cooperated nicely. We saw more pictures of the esophagitis (which had not improved noticeably but wasn’t worse either). The candida was mostly gone, and another dilation was done. Eating became even less problematic in the weeks following, but occasionally food would still get stuck.

On September 8th we were back for another EGD with dilation. This time we saw, for the first time in three years, the esophagitis had improved! The candida was gone! The antral web had stayed open and we would keep an eye out for symptoms (unusual vomiting) – they dilated her narrow place a bit more and it cooperated well. It was now appropriately-ish open for her size and age. The GI doctor discovered a small hernia, but no big deal. Our doctor referred us to a general surgeon to bring into the loop about the antral web and hernia should they ever be a problem, and an ultrasound was ordered to get a better look at the hernia. We made an appointment while in recovery that same day for the surgeon, scheduled the ultrasound and celebrated the improvement of the esophagitis, as well as the news that the dilations would be minimal from here on out. Halleluiah!

It is hard to believe that four years ago we were waiting for Grace and researching and consulting doctors and checking boxes as to what special needs we would accept. Once we received our referral, I remember believing that we knew so much before we met her. I knew that some families get surprises, but surely our little one had been hospitalized so many times, had already had her tracheoesophageal fistula (TEF) surgery and blood work and examinations many times – we probably knew mostly everything. I was wrong. But, as I mentioned before, if I had known everything, I might have worried myself out of one of the best parts of my whole life.

Sometimes knowing enough, is enough.

Maybe you don’t like surprises especially medical surprises. Maybe that is what keeps you from adopting: the unknown. I get that. Maybe you feel ready to take on anything because you have faith in the God to equips the called – I get that too. Since September 8th of last month, we have had a rollercoaster of new information and new diagnoses and new appointments and tests and I have asked God – what now? What is next for us – now. Please give me peace over this – now.

I thought maybe reading a day in the life of some real life medical drama might help someone and I pray it does. I pray it helps the parents who, like us, bow our head to new unexpected information and ask – what now, God? I pray it helps parents who, like us, struggle with conflicting medical opinions from two different, albeit brilliant, doctors – who then turn the decision back to us and say, “We can schedule surgery at your convenience.” Surgery is actually not convenient; not for our little one who is trauma triggered by hospitals and medical interventions.

…..

So, if I wrote a diary (if I had time to write a diary) it might look something like this…

September 29, 2016:

Today we visited the surgery clinic because our last three EGDs showed that Grace has something called an antral web; where the opening from the stomach into her small intestine is partially obstructed with a thin membrane. The latest EGD also showed the antral web and a hernia (this is new).

The web was dilated in April and had remained open, the specialist said. I saw the color pictures in November of 2015, April of 2016, and September of 2016. I saw the labeling of the diagnosis “antral web”, and a different picture of the “hernia”.

We arrived to the appointment today and I was nervous because two abdominal anomalies would probably mean they want to do surgery. To my shock and surprise – there’s only one anomaly, the surgeon said.

“This is not an antral web. There is no web.”
“Oh! Just a hernia then?” I asked…
“No,” the surgeon replied, “There is no hernia, and there is no web. She has a completely different congenital anomaly called an enteric duplication cyst, sometimes it’s called a duplication of intestine.”
“She has another intestine?!” – this would have been a great time to faint but I held it together…
“No,” the surgeon continued, “She has had this always. Sometimes in utero things happen and it’s as if a twin of whatever organ was developing at the time began to develop and then stopped. It’s a cyst and it seems to have the same tissue as gastric organs.”

At this point my mouth hung open and I was looking between the labeled-full color-hi-def pictures of her previous EGD’s which say, “antral web” and “hernia”; and then back at the surgeon, and the over at my husband, and then back at the surgeon.

I asked if the GI doctor who, for a year and three EGD’s and several other exams (who, had diagnosed something completely different) was around so we could all have a pow-wow. She was not. The surgeon ordered an upper GI test where Grace would drink strawberry flavored liquid chalk (aka barium) and they would watch it move from her mouth, through her esophagus, into her stomach, and measure any obstruction as it flows out her stomach and into her small intestine, passing what was formerly known as the antral web, but now we call it the duplication cyst. Ahem.

The surgeon would be able to tell me once she knew it’s size and location whether or not this was something that we could just watch, if it needed to be surgically removed soon, if it would be able to be done laparoscopically, or if it would be major abdominal surgery.

The upper GI is scheduled for next week Wednesday morning, I suppose we might know more then. I just know I don’t want to make this decision. No thank you. Please, Lord just let it be obvious.


October 5, 2016:

The upper GI was a piece of cake. Easy peasy and no owwies – my favorite kind of test. Funny thing, they took an x-ray which showed her spine. When I saw it, I immediately raced back in my mind to the first x-ray I saw of her spine and thought that this image looked much improved! That can’t be – they said it wouldn’t improve.

I found the picture from 2013 and compared it to the one from today and it has noticeably improved! Only God makes the crooked straight! What a blessing to see that during a test for a completely different issue…

The results of the upper GI are in on “My chart” – it looks like the surgeon was correct – it says “duplication cyst, proximal to the pylorus” (I googled it – it means next to where the stomach narrows a bit and enters the small intestine). It doesn’t say obstruction… that’s good… it says there was no reflux during the procedure! That is great! It says they will call to discuss.


October 7, 2016:

The surgeon’s nurse called today and it seems like the very situation I was hoping to avoid. “The doctor is recommending surgery, we can schedule at your convenience but it should be done in the near future. It looks as though, based on the last three EGDs, the cyst has grown but we can’t be sure because no one took measurements since it was misdiagnosed.”

I asked, “Could we have a repeat upper GI in a few months to see if there is any change – any growth or any shrinkage or if it’s even gone away on it’s own?”

“They don’t go away on their own, and they typically do grow. It appears this one has grown over the last year but you would have to talk to the doctor about that.”

I asked about the surgery and the specifics, and she didn’t know exactly but said there is a 50% chance it could be done laparoscopically. The surgery takes three hours, and we should expect 5-7 days in the hospital and a week following discharge of no school and minimal activity (have they met our child??)

I asked about our GI doctor and what she is thinking about all of this and if they were consulting and collaborating and the nurse didn’t know. The nurses only know the paragraph that the doctor writes.

This is when I began to get a little salty and requested a consultation with both doctors to discuss a plan and the risks of waiting vs. the risks of surgery. Do we need a third opinion here? If there is no symptoms of this cyst being a problem can’t we just leave it alone and watch it for a while? We could all have cysts we don’t know about just hanging out for heaven’s sake. If we are sure it isn’t causing any problems now – can’t we wait until it is, or at least until she’s a little older, or at the very least – until it’s not cold and flu season!! She is a pulmonary patient after all!

…..

This was three days ago. I haven’t received any communication over the weekend. I’ve googled enteric duplication cysts, and indeed they are rare. I have asked several of our doctors if they have ever had a patient with one. I have yet to find one. They usually do come out surgically, but I couldn’t really find out much more. I could google and google, but it turns out little miss was developing pneumonia over the last couple of days so there hasn’t been a lot of googling time – which is probably a good thing.

There’s a little gray cloud over me that I’m trying to keep smallish, and let it not cover the next six months of our life; but when my mind wanders – I wonder if it will have to come out before Christmas, or before spring break, or what if it becomes an emergency, or maybe it could be next fall after our oldest goes to college and we get through that whole life change. I can go a hundred different places in my mind in just a few minutes, maybe you can relate.

I looked at her tummy when I was helping her change into he pajamas, and wondered how many more battle scars on her little body there will be when all is said and done. Truth be told, I am more worried about the emotional scars and trauma than the physical scars and trauma. These types of events are harder on her than the average person. Her body and brain remember things her mind has graciously forgotten.

Before we met, she spent many nights in hospitals with out a Mama or a Daddy; many nights sick and coughing and crying with a pacifier taped to her mouth and an IV in her head. She doesn’t remember but I remember the pictures, and I’ve heard the stories, and that is enough memories for both of us.

Grace has no memory of the 10 days we spent during and recovering from open heart surgery when I was a little younger and a lot braver. It was a life and death situation so I didn’t have to choose when it would be convenient to have major surgery. It isn’t ever convenient, and if I’m honest it scares me half to death.

We parents who have children with medical and emotional diagnoses and a history of trauma have our own trauma don’t we? Maybe we have our own version of post-traumatic-stress. I can feel myself sinking into the quicksand of worry and anxiety imagining 5-7 days recovering from abdominal surgery and I haven’t even heard all of the risks yet. It’s silly, really. I sat in a waiting room for 8 hours while her heart no longer was beating on its own and a machine did all the work. This abdominal surgery is nothing compared to open heart surgery… but still…


amy2


In the midst of the quicksand though, I keep remembering this picture. The two spines, four years apart. The one on the left curved from birth. It would “always be curved” because her vertebrae are differently shaped; and yet the one on the right is noticeably improved. She wasn’t braced, nor did we see a chiropractor or therapist. It just became less crooked, and more straight. More straight than I expected, even though I prayed for that very thing.

I choose to believe it is an answer to prayer. It could have been this way for two years but I didn’t know it. How coincidental that we saw a picture of remarkable healing on the very day we would got a new diagnoses, or maybe it’s not so coincidental at all.

I believe in a very intentional God who is never surprised. A friend said to me once when I was gripped with fear over something that (as it turned out) was not worth my energy… “God is not surprised by this.” I have gone back to it over and over and over again and it rings as true today as it did then. We have been surprised many times by Grace and by how she was knit together, and how we were knit together.

Our story of how we first saw her and when we learned she was ours is miraculous. It is miraculous how God knit us together as a family and no less miraculous how He knit her together in her first mother’s womb despite her being knit together differently than most.

I believe it’s no coincidence that on a day when we need to step back and take in the reality that the practice of medicine is just that – a practice, we see evidence of significant healing. Medicine is a science – based on some facts, and some interpretations and opinions of data.

Sometimes highly intelligent and experienced people see pictures and form two completely different diagnoses. Some things like heart surgery are life and death absolutes. Sometimes it’s up for discussion and turned back to us parents and we are told: “We think that this might need to be removed surgically at some point in the near future but at your convenience.” Meaning, I have a say in this.

I have to pull up my big girl pants and look at my child, consider her history, carefully listen to expert advice, and advocate in her best interest. It’s the most basic job as a parent next to loving our children. Sometimes though, I don’t know what’s best for her either and that is the pits – lemmetellyou.

Three years ago, if someone had shown me a picture of what her spine would look like today, I would have said, “That would be a miracle!”. Things aren’t supposed to happen like that according to the experts. Gastric duplication cysts aren’t supposed to shrink or disappear either. What if it does, though? What if God, who gave us a glimpse of our daughter months before we received her referral and blew our minds, intentionally reminded us – on the very day a new diagnosis was revealed – that her permanently congenital scoliosis is no match for the Great Healer.

What if we, for once, opened our eyes to who He is instead of hearing only our fear – screaming at us to act, to move, to control, to give in, to ignore.

Maybe you’re afraid to adopt because it’s too scary – and it is scary! I don’t know how people do such things without Jesus. I had not one doubt adopting Grace was God’s idea before it was ours and He showed up and showed off and continues to do so. I have moments though, when I have to choose to remember that He is the same God who called us to her. He is the same God who, when her family or origin was broken and she was alone, orchestrated the events to bring us together. I believe it as sure as I believe that the sun will rise tomorrow.

If I believe that, then I must also believe He is the same God who will give us the peace that passes understanding and the wisdom to do what is best for her. To find the balance between acting in wisdom, and faith, and having discernment to know the difference is tricky – and I’m not there yet, honestly. I actually don’t know what to do – yet. But I know who does and when I remember who He is and how He has led us this far… the little gray cloud over me gets a little smaller and the sun comes out and I’m only partly cloudy then… and that’s ok.

So what is it you’re afraid of? A condition you accept that is harder than you expect? Surprises in your child’s health that will overwhelm you? Maybe you are afraid that adding someone to your family with change everything. I assure you – it will.


amy3


Tonight I’m praying, if that is you – God will remind you in personal ways who He is and guide you in making big decisions. You’ll need Him more than ever, and if you don’t know Him yet – this is a great time to get to know Him. I assure you, He wants to know you. He is your biggest need as a parent, and your biggest need should you pursue adoption.

Adoption was His solution to our oldest problem, and you can be sure that if He calls you to it – He will equip you for everything from paperwork to the known and unknown needs and all of the surprises along your journey.




5 responses to “Knit Together”

  1. […] This one resonated with me SO much – cause God has been showing up and showing off here with our littles too. […]

  2. Jenny Kleiman says:

    What great wisdom here. Especially hard to trust when you are in the middle of the storm not on the other side, yet He is the same God who called us to this. Trying to hold on to this truth right now as well so thank you for sharing your story.

  3. John says:

    We have adopted four…Peace and strength to you.

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