His Blood

First of all, thank you to all those who left comments, commented or messaged on facebook, or sent emails and skypes in response to His Hands. The positive feedback was encouraging, and I felt the genuine support of all you readers. We are blessed with such an awesome community of friends and family. Thank you!
If you missed the first part of this update, click here: His Hands 
I've been told that I left the last post in a cliff hanger. I meant to provide the next part of the story much sooner than over a week later...but once again, I don't really know what to say.

The Wait

Right now, we're stuck in this place of anticipation. It's like sitting in a waiting room for the past month. We're waiting for Noah's blood to be tested.  It is being stored in a suburb of Milwaukee at a children's hospital. As we wait and wait for the next step, my mind is on 'hold'. There's no reason to feel any emotion right now because I have no idea how I ought to be feeling. We're holding our breath while we sit on pause, waiting for action to start. What will we feel when the waiting is over? I cannot even comprehend the possible scenarios because it is too much for me to handle.

We're waiting on insurance.
We're waiting on labs and doctors.
We're waiting for answers.

Ultimately. we're waiting on God.

While I don't know the outcome of all this waiting, I find hope in seeing God's hand on Noah's life. I sense the Lord protecting us and assuring us with his peace, as parents. We're not freaking out over here, by the grace of God.

My hopes for Noah....
I am reminded that whether Noah has a syndrome or not, he was created by God for a purpose.
I am reminded that while man sees what is on the outside, the Lord looks at what is in the heart.
I am reminded that God loves and accepts those who believe in Him because of His redemptive work on the cross. It is by faith that we are saved, not by works, or appearances, or the construct of our DNA.

I hope that Noah will understand that God looks at His children through the righteousness that is imparted to us through His Son's atoning blood. And while we're waiting for Noah's blood to be tested, I am thankful that Christ's blood has covered all of our transgressions and provides a way for everlasting healing and complete restoration.

Here's the story.

Adam found the closest geneticist within our insurance network--in Wisconsin. He called to set up an appointment--it was then that we found out that a Board would review Noah's case and determine whether or not they would accept him as a patient and who would be his doctor. The nurse on the other end of the phone asked several questions about Noah so that a case could be made for him. After nearly a week of waiting, we received a call saying that Noah could come in for an appointment.

That was relief #1.

Relief #2 was that they were able to schedule his appointment as soon as possible. Originally, they didn't have any openings until mid-October. After explaining that we would be returning to China in September, they were able to squeeze Noah in that very same week.

The Appointment

A praise was that we made it to the appointment on time--despite the fact that we had horrible directions, spent some time feeling lost, and ended up on a detour. When we finally made it inside the Children's Hospital, we didn't have to sit in the waiting room for long. The staff was very professional, and the hospital was clean and comfortable. But I kept wondering, how did we get to this point? Thankfully, the feeling of relief continued to strengthen as the day wore on.

Relief #3 was the level of care the doctors took with Noah during his appointment. We were told before we went to the Children's Hospital that they wouldn't take any of Noah's blood for any DNA tests--but that they would just take a look at Noah and determine whether or not he needed any genetic testing. We walked into the hospital fully expecting to be told that Noah's appearance wasn't enough to garner any further investigation and that I was just an over-paranoid mom. However, we were seen by several different doctors and consultants who took close interest in examining Noah.

It was the first time that we felt that doctors were actually helping us. Before, concerns and questions were brought up by us. We would point them out to doctors, who would either give us some advice about what to do next or brush off the concerns. It was so relieving to have someone smarter than us validate our concerns and point us towards answers.

Relief #4 was feeling vindicated in our worries.
Relief #5 was feeling assured that answers could be found.

When the first doctor entered the room, she explained who she was and the 'heirarchy of doctors' we would be seeing that day. She said, "the first thing I need to know is why you think Noah needs to be here today". We listed off his 'symptoms', with some hesitation. He was only two weeks old, we had hardly known about any of these issues for more than a week, and already we were used to be people saying that it was nothing to worry about. I held my breath, waiting for her to look at our short list of concerns and say, "that will just sort itself out with time."  It's hard to explain how relieved I was when she agreed that we had been right to schedule an appointment with her office.

Noah, around 2 weeks old 

During Noah's appointment, an in-depth family history was taken. I forgot what it's called when they use graph paper and lots of little squares and lines and circled numbers, but it felt 'scientific'.The doctor went far back on both sides of our families, asking many questions about all our siblings, parents, grandparents. About their healths, their ages and our birth order, about our ethnic backgrounds and medical histories.

The doctor  made notes about my pregnancy with Noah, my pregnancy with Willow, Willow's health, Noah's birth and delivery. She asked about the air quality in Shenyang, about the water I drank, and all the things we knew about Noah's health already. It's been about a month since this appointment transpired, but I remember that she went through what seemed like pages of questions.

I was relieved when she took about 30 minutes to examine Noah. She saw everything that we had seen in his appearance....PLUS more. She noticed details that seemed abnormal to me, but that no one else would believe me about (it was so frustrating to say, "doesn't his nose look asymmetrical", and no one could see it except for me). She took pictures of Noah from different angles for their records. It was the most thorough check-up of a 20 inch human being. If all that examination did was give me a sense of validation, then it was successful. Finally, a medical professional was actually 'seeing' Noah through my eyes--but with one marked difference: she had the medical knowledge that I lack.

After this thorough check-up, which spurred a whole new round of question asking, the doctor left to confer with the actual geneticist. He came soon after and also examined Noah. He paid special attention to all the features that the first doctor had found significant. He spoke to us in a very reassuring nature. He confirmed that Noah's DNA should be tested. In a way, this is an incredibly new benefit of modern science to be able to do something like this. He was not very worried about Noah, but he acknowledged our concerns and the importance of "KNOWING" if there was something amiss. He gave us a plan, he told us what to look out for, and he reassured us overall. 

Basically this is what he told us: 

Noah definitely has birth defects, assymetry, and abnormalities. Whether all these conditions are connected or not is the question. If they are connected by the same underlying cause--what is it? Perhaps he has some sort of syndrome. The tests that he is able to do could identify what is the root cause is, if any. If they are not connected, what is causing them? It could simply be the uniqueness of his genetic structure. Or, everything we have noticed about Noah could have been caused by the environment: meaning, the pollution I was exposed to while pregnant with him.

He didn't throw around any names of possible syndromes; which was wise on many levels. So I can't say right now, "Noah might have ______________". On one hand, it adds to the frustration of not knowing. But then again, I'm glad that I have nothing scary to google. 

The Plan

 The plan is our temporary answer. It mostly involves waiting.  

Thankfully, the geneticist said that they would draw some of Noah's blood that day, and that they would be able to store it until the tests could be done. Usually they wait for insurance approval before drawing blood, but they instantly made an exception for us. We didn't even have to fight for this, let alone propose the idea! They actually wanted to draw two vials of blood--one of the future genetic tests, and one for further jaundice testing. Apparently, a bad case of jaundice can be another 'symptom', and Noah was still significantly yellow at two weeks old. 

The genetic consultant explained that they would present Noah's case to our insurance company so that we wouldn't have to worry about the high cost. They explained that it would take 3-6 months to have results (both approval from our insurance company, and the actual test take time). 

They were supportive of our move back to Shenyang and said that they would be in contact with us over skype, facetime, and email. 

The relief just kept coming! They gave us a list of things to be on the look out for while we are in China waiting. I felt even better, knowing what to communicate to the doctors in Shenyang. 

What to Do While We Wait

1. Continue to check on his heart (via ultra sound) to see if the hole is closing on its own. The hole in Noah's heart is small, and in the upper region of his heart. This type of hole often heals on its own. But if it doesn't, that would be further indication that something is not quite right. If his hole isn't closing up, contact the geneticist. 

2. Have an ultrasound performed on his kidneys every three months. Everyone is born with some asymmetry, but Noah has quite a lot of it in his upper body. Babies with considerable asymmetry are at higher risk for developing tumors on their kidneys. Tumors developing on kidneys are further indication of which syndrome he might have (or first sign of something more serious). Once again, his skin tags on both ears are another sign that his kidneys are at risk. If he develops kidney tumors, contact the geneticist. 

3. Track developmental milestones. If he is not reaching physical, mental, emotional, social (etc.) milestones within the appropriate/suggested time frames, contact the geneticist.

To Summarize the situation: we are currently waiting for our stupid insurance company (which hates to pay for anything) to approve Noah's testing. We will then wait for his DNA to be tested. Once we have the results, we will meet with the geneticist again (either in person or over skype, depending on timing of events) and go from there.

Test Results 

There are three possible outcomes:

1. Noah's DNA is completely normal. Meaning: all the little sign-posts in Noah's health are just a 'coincidence' in that they are not connected by a bigger underlying condition/syndrome.

2. Noah's DNA exhibits traits that have been seen before in other patients. Meaning: they are able to diagnosis him with a known syndrome.

3. Noah's DNA shows abnormalities that have never been seen before. Meaning: there are so many different genetic codes, and maybe his is different from anything they've ever seen before. This could mean two things: a completely new syndrome is identified; or he is completely normal. The way they would determine this is by checking mine and Adam's DNA. If what they find is similar to either of our genes, and since we're okay, then he would also be okay.

Why Test Noah? 

I've had a few people ask us this question. It's hard to explain why I want this so badly. Besides pediatricians and surgeons recommending it, and the fact that the geneticist said it was good to do so....I really want some peace of mind. If Noah is completely normal, that's great. If he has a syndrome, I want to know about it as soon as possible and not find out about it when he's older and isn't developing normally. And there's also the fear, and very small chance, that he could have a rare syndrome that has a short life expectancy. If that's his reality, then I want to know.

There's at least one more post about all this coming soon. More about all the day-to-day ramifications we're experiencing since Noah entered the world.

The main thing I want to express right now, however, is how much I love Noah. My love for this little guy is pretty intense. 

His Hands

It's nearly 2 o'clock in the morning, which means it's a great time to write. I have some intense jet lag right now; it's so much more difficult to get through with two kids who are up at all different times.

I've had this post in my drafts box...waiting and waiting to be worked on for over a month. I just don't know what to write about this area of our lives right now. It's too difficult to process, and much easier to just ignore and separate myself from all the 'what ifs'. I'd like to call it 'faith', that I'm able to go through each day with less and less worry for Noah. But maybe it's me just coping with something I don't know how to handle. I know there are levels of denial and anger working out under the surface too. It's complicated.

Some of you know this story as it's unfolding, and some of you probably have no idea. I haven't facebooked  or blogged about it--not because of any shame or embarrassment--but just because I don't know what to say. Don't know what to think. Don't know how I'll feel if I start writing about it. Scared to find out how I'll feel. I think I'll become more angry and more broken hearted--and I would much rather have some happiness. Ignorance is bliss, so they say. But in this case, it's not true. My ignorance is torture.

This post is about Noah's hands. But really, it's about the Father's hands. I want to rest in my Creator's hands through the uncertainty. It seems that Noah's hands are a big deal right now, but I want the Lord's hands to be the focus.

For He made Noah this way for a reason.
I believe Noah was perfectly knitted together exactly how God intended him to be.
For some reason, Noah was born a little different, but so special. I'm learning to look at new life through the Father's eyes. To hold my baby with hands that treasure existence, just as God treasures him.

When Noah was born, I thought he was a 'perfect' baby. Perfect in the sense that he was beautiful and healthy. God is redefining my understanding of perfect. Ten minutes after he was born, Adam pointed out these little bits of skin sticking out on both of his ears. I admit that I was horrified and shocked at their presence. What were these flaps of skin, and what did they mean? By the time we were moved into the recovery room, Adam was googling skin tags. It's a minor birth defect, and some people choose to have them removed by surgery or tying them off. While others embrace their presence and keep their skin tags.

But Noah had TWO. One on each ear. Apparently, when babies are born with one on each ear, it is sometimes linked to kidney abnormalities in rare cases. Before Noah was 24 hours old, his pediatrician ordered an ultrasound on his kidneys. They wanted to make sure he had two (instead of one large one) and that they were connected to everything in the way they ought to be.

Several days later, we finally heard the results--his kidneys were fine. I felt relief.

Our first morning in the hospital, I was holding Noah. My mom, sister, and Willow had just left after visiting us. Noah was hardly a day old. He was swaddled in a Halo wrap, and I had barely been able to see his little newborn body. I think I was trying to wake him so that he could finish eating. While I was unswaddling him, I noticed his hands were not the same.

His left hand was smaller than his right hand. Two fingers on his left hand were webbed. His middle and ring finger were bent. A few days after that, Adam noticed he is also missing some bones in his fingers. The fingers which have the webbing are missing some joints (only two knuckles, instead of three).

What does this mean? I remember, my heart dropped again. Like with the skin tags--although this felt more serious. I felt instant guilt that I hadn't noticed sooner. I wondered why none of the nurses or doctors had told me. Later, I found out it had been recorded on his chart, but the nurses had failed to mention it.

My next thought was for his future. Hands are so important to people, and maybe more so to boys/men. Maybe some people will argue that point with me, but it's my simple opinion that men believe their hands are important. Could Noah play an instrument? Could he play sports? Would he need surgery? Would kids bully him? Would he be able to wear gloves? Would he forever be self conscious?

I think Adam had a lot of these misgivings intially too. Then he had an encouraging insight he shared with me. In a way, God told Adam that it didn't matter how the birth defects in Noah's hand would affect his future. It didn't matter whether or not he would be able to play basketball or the piano.What mattered more was that Noah would grow to live in the center of God's will and that he would learn to worship and obey Him.

It is useless to worry about whether or not he will be bullied or feel self-conscious. Instead, we ought to be praying that despite any challenges that may arise in his life, he would be able to conquer them by God's grace.

Nevertheless. I felt so sorry for Noah. I stared at his hands endlessly. I researched what his condition, syndactyly, was all about. I learned that it is sometimes caused by environmental factors (such as cigarette smoke or high pollution). Adam did a lot of reading too, and we compared notes. My heart filled with compassion for Noah, and if it's possible--caused me to love him even more.

Newborns are already incredibly helpless and dependent. But somehow, I felt like Noah needed me more than the average baby. He needed an advocate, someone to take up his case, someone to encourage him, and someone to pray for him.

Fast forward one week. At his one-week wellness check-up, we saw a different pediatrician. She saw his skin tags, saw his syndactyly. Listened to his heart, and noticed his very jaundiced appearance. She brought some new information to the table. Often, people with syndactyly have holes in their heart too. Just from looking at his hand, she knew that Noah should have an echocardiogram of his heart. Isn't it crazy that from looking at his skin tags, his kidneys became a target for concern? And then from his syndactyly, his heart became an issue?

We brought Noah back to the hospital so that he could have an ultrasound on his heart performed. Not even two weeks old, and he had had two ultrasounds performed on his little 7 pound body. During the test, Noah was a rock star. He hardly fussed at all, and slept the whole 40 minutes, while the technician took extremely careful measurements of his heart. Neither Adam nor I know anything about reading ultrasounds--but we could tell that she was focusing on a certain area. And we could also see a hole. She didn't tell us anything positive or negative--she said that a doctor would be in contact with us after a specialist read the test. I left the hospital with Adam and Noah feeling slightly optimistic.

It was better not to dwell on the worst case scenarios, or to think of the terrible 'what if's'. I was too fragile to go down that route--and really, what good would it do?

So we waited.
We waited for the phone call.

Finally it came. A nurse from the doctor's office let me know that he had a small hole in the upper part of his heart. It was not serious, in that it would probably close on its own. However, the doctor wanted to monitor his heart at all the appointments. I felt numb, as I almost cheerfully thanked the nurse for the information. But I slowly started to feel my heart sink again.

Skin tags.
Syndactyly
Hole in heart

The list was starting to feel scary.

At Noah's one week check-up, his doctor also recommended that we see a plastic surgeon or orthopaedic surgeon to discuss surgery timelines for his hand. Especially since we would be moving back to China, it was imperative to know when the optimal time for fixing his hand would be.

So that was the next stop. To a hand surgeon.
We had to wait for a over an hour in the surgeon's waiting room. When we finally were seen by the doctor, his appraisal was swift. He confirmed that Noah had simple, uncomplex syndactyly. This is really the best case scenario. It means that his fingers are not joined all the way up to the tip of his fingers (just mid-way), and that they are joined only by skin (i.e. the bones are not fused together). It's a relatively 'simple' surgery that can correct this, with the possibility of skin grafts taken from his groin area.

12-18 months is the best age for this surgery. Young enough not to remember the trauma of surgery and recovery, yet old enough to take on the risks of being put under general anesthetic. It's also important for his hand's development and his gross/fine motor skills that this surgery is done at an early age. As his hand grows larger, ring finger and small finger will continue to grow at crooked/bent angles (being pulled in by the webbed digits) unless his webbed fingers are separated. So, for the continued development of all his fingers and skills--surgery is definitely the answer.

We asked him if he thought Noah was missing some bones in his fingers---he said it was hard to tell without an x-ray. It's even difficult for us to tell with our eyes, because his hands are so small still.

We left that appointment feeling assured that we had a plan. Noah would get surgery on his hand next summer in Korea or America. Definitely not China, though.

Call it paranoia, sleep-deprivation, or an overly concerned mother...but I started to notice other things about Noah's appearance. His lower jaw seemed to be significantly recessed, in my opinion. It is sometimes very painful to nurse him, at first I thought it was because maybe I was feeling his teeth. But....he's a newborn! I think his jaw makes it difficult for him to nurse.

I saw his eyelids were not symmetrical.
His ears were not symmetrical.
Even his skin tags were not symmetrical.
His nose was not symmetrical.
There was the very apparent disparity in the size of his hands and fingers. His right hand looks large and health, like Willow's. But his left hand is super-small and almost looks underdeveloped.
I noticed that his left arm was always lost somewhere in his long-sleeved pajamas. So I started to feel like his left arm was shorter than his right arm.

Everyone has a little asymmetry, but Noah has a lot. Was this just a coincidence?
And then, like the paranoid-sleep-deprived mother that I was...I started googling all these things I was noticing in Noah's appearance. .

With all his "symptoms" in combination, there are some frightening answers online. If these were the indicators of a more serious syndrome....we wanted to know.

That's when I asked Adam if he could make an appointment for Noah to see a geneticist.

Birth Story: Little Noah

Looks like Willow was explaining the TV show she had turned on. Willow treated the hospital recovery room like her hotel suite! These were Noah and Willow's first cuddles. 

Noah's Birth Story continued....

If you missed the previous posts--click here to catch up! 

These pictures are in no particular order. I was going to try and fix that--because I like chronology. But then...there are so many of them, that it just ends up being a whole lot of trouble with this blogger thing. So...just soak in the newborn pictures. They were all taken within 24 hours of each other anyway.

When Willow met Noah, on August 9. She was so excited to see mommy's baby finally. She bonded instnatly with Noah--whhich seemed so unusual and special. I was in the bathroom when she first entered the hospital room--so I missed her initial reaction. But Noah quickly became 'her' baby.

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These were gifts from Adam's cousins; jewelry that doubles as teething toys.

It's absolutely crazy looking at these pictures of Noah in his going home outfit. He can no longer wear this outfit (which looks pretty big on him in these pictures) because he is too fat and long. He has grown so much in a month--nearly four pounds! That pretty much leaves Willow's growth chart in the dust.

We had to wait a while to get discharged from the hospital. I almost lost my cool with the nurses. I had to be very firm with them in order to get out of the hospital on the day that I wanted to. I felt like I was a full-blown Chinese woman. Because Noah was born at 10pm on Wednesday, we couldn't be discharged on Thursday. You have to wait 25 hours, and they don't release patients late at night. So, I wanted to leave on Friday morning. Because our last nurse was pretty incompetent, it took over 6 hours to complete the process. She kept leaving us in favor of discharging other patients. I guess I raised enough of a post-pregnancy hormonal fuss that the manager came and took care of our discharge orders. Whoops.

I just really wanted to get out of the uncomfortable hospital, and back to my little Willow.

Napping while waiting to leave the hospital. 

When we arrived at my mom's house, Willow had so many emotions going on. As we parked in the driveway, she was outside laughing/screaming/crying at the same time. I don't think she knew if she was happy or sad or angry or excited that we were all together again.

We all went inside and Adam handed Noah to Emma so that he could unpack the car. Willow didn't like that at all and started crying, "my baby!". We had to quickly hand Noah over to Willow so that she could calm down. She was over due for nap; my mom had let her stay up later than usual so that she could see us. She had gotten a bath and a cute outfit on, as well as her hair curled in preparation for us to come home. But because it took the hospital so long to let us go, Willow ended up waiting and waiting....and waiting for us. Poor girl!

You can still see remnants of the sad tears in these pictures. But she was so happy and proud to hold her baby brother. She is so extremely attached to him and has yet to have any confrontation with him. She loves him so much, and I hope the affection lasts for their whole lives.