Monday, September 16, 2013
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.
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.