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.
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 AppointmentA 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|
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 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 ResultsThere 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.