Friday, May 15, 2009

DEAR FRIENDS AND FAMILY,


Most of you probably have heard something about Nate being tested for MCAD. For those of you that know and have been praying, i can't THANK YOU ENOUGH. Your prayers have been heard and we have had peace in the midst of this uneasy time for us. For those of you that haven't heard, I'll give you an overview of the past couple days.
On Wednesday my mom and I took Nathan in for a regular newborn checkup with his pediatrician that is routinely done a few days after they leave the hospital. His checkup went great. He left the hospital on Sunday weighing 7 pounds 1 ounce and was back up to 7lbs. 8oz. at the doctors office. The doctor said everything checked out well and we couldn't have asked for a better report. When we got home there were two messages from a doctor at a large hospital in Rochester, NY where all the newborns blood work is sent. (In the hospital, every newborn is given a heelstick to draw blood taken for a series of tests that may be detected by the bloodwork, but not physically seen yet.)
So, the second message from the doctor definitley got my attention because she gave me her cell phone number and asked that I contact her ASAP. She told me that his bloodwork came back with a level of 2.7 for MCAD and that we had to take him to Rochester's genetic specialists the next day. She told me that MCAD was a genetic disorder that could make Nate very sick if not treated and if he wasn't eating well. She knew that the appointment could wait until the next day because she had called the pediatrician who told her how well he looked and that he was eating well.
Thursday, Josh and I drove 2 hours to Rochester's Children's hospital where baby Nate was re-evaluated. The doctor was pleased with how well he looked (gaining weight, good muscle tone, alert, and eating well). She explained more about the disorder and what we do to treat/manage his care. More blood work was taken to make a definitive diagnonsis of MCADD that we will know the results of in two to three weeks. However, with his first result of 2.7, they said they would be surprised if he didn't have it. They have never seen a result over 1 where the child didn't have the disorder. It was a long couple of days for Josh and I and the rest of the family. We were completely shocked due to Nathan looking so healthy to us and even to the pediatrician. This disorder is newly found and we are thankful he was tested for it and diagnosed early. We are still praying the God will heal him and his results will come back clean. However, if He doesn't, we know He will get us through this and give us the strength to take care of Nate to the best of our ability.
I will give you all some information that the doctor gave me on MCADD. It is a disorder where fat in the body cannot be broken down and used for energy. It affects someone when they are fasting, sick, or cannot eat and drink as usual. Children have more problems with this disorder since they need more energy and calories and are less likely to eat and drink when sick. Untreated MCADD can lead to severe effects. It is passed on genetically from those that have the disorder or carry the altered gene. It only affects about 1 in 15,000 people in the US.
For us, this means we have to keep a close eye on little Nathan. I have to set my alarm at night and make sure he doesn't go longer than 4 hours without eating. We now have papers that we have to keep with us in case he needs to go to the hospital. The papers show the doctors and nurses how to treat a child with this disorder properly to ensure they will not get too sick and suffer worse side effects. We know when to take him in from the doctors guidelines and just will keep praying that God will give us wisdom in these situations.
I am so thankful Nate eats well and is looking healthy. His slight jaundice that he had is almost completely gone and he has been more alert the past couple of days. He is extremely laid-back and mellow and smiles ALL the time even though I know its not on purpose :). He is such a delight to our family and we are so thankful God blessed us with him.
We will keep you updated when we know more in a few weeks. If he has this disorder, he will be followed up with regularly by these specialists and will more than likely be on an enzyme supplement by 3 to 6 months of age that will help him out somewhat.
We know God can heal him if its His will. And we know God will get us through this disorder if that is what is in store for Nate. Please keep us in your prayers as we wait on results. Please aslo pray that Nathan stays healthy so we don't run into complications from this. The doctor encouraged us by saying children with this disorder do well and grow up healthy as long as they are treated and monitored.
We know we serve a mighty God!
Thanks again for your prayers.
We love you!
Love,
Josh and Sarah

Here is a picture of Nate "sunbathing" when he was slightly jaundice.

Abby and Will just love him so much. Will loves to hold him and Abby constantly kisses his head leaving her drool marks.

My sweet boy, Jesus is watching over you and has such great plans for your life!

9 comments:

joe erin and molly winkels said...

sarah - i read christy's post and then saw your post (i looked at your post earlier today to see if anytthing was posted) anyhow, i just wanted to say that you and josh and esp. baby nate are lifted up in our house and that we will be fearlessly praying for that little baby boy with all of our might! please let me know if you need anything at all - you know at the drop of a hat if you holler i will come.
i will call you later this weekend, i know that you are mighty busy, but i will try
i love you and hopefully i will talk to you soon!

MIKHEL said...

Hi Sarah, I am so sorry for this problem with Nate. I just wanted to let you know that we are praying for you over here. I really hope he gets better soon.

rebecca fisher said...

Sara
Friends of ours have a son and the doctors thought he had a disease that sounds exactly like what you are describing. H ehad positive tests and they later found out he didn't have it. I hope that give some hope. We will be praying the tests are normal but also for peace with whatever God allows. e is so beautiful and we can't wait to meet him.
Love Becca and Nate

Christy said...

wow, I love the pictures... he is so beautiful... I can't wait to see ALL of you in just a week and a half... I am so excited! I love you... and we are on our knees for you every morning, throughout the day... and at night... probably 50 x's or more... you are so dear to our hearts... and only wish you would live closer...
whatcha think... move back down this way, closer to a genetic hospital... or whatever kind it is... then you wouldn't have as long of a drive and I could keep the kids for you every time you need to go in, And every time you guys want a date night. Sounds good right?

Mari Fontana said...

I will continue to lift you up. He is beautiful!

Mrs. Tracy said...

Read about Nate on Christy's blog...he's such a cutie!

Will keep your family in our prayers!

KrissyKoo said...

Thank the Lord that you seem to be holding up and in good spirits knowing that the Lord has everything planned out and knows the outcome of little Nate's disease. God is a good God and rob and I will pray for your mental strength and Nate's physical strength.

Love you girl!

Jen said...

Sarah, a great post!! Love all the pictures!! Can't wait to meet him in person to hold him!! Praise God that he is giving you all peace an comfort through this!! We serve an Awesome God and praise the Lord that you both know Him!! Love you all and constantly praying for you!!

Shak Family said...

Thanks for the great update, info and all. Of course we are praying tons for you. In fact, I woke up in the middle of the night last night with ya'll on my mind. What better to do in the night then pray! Love the pics of the kiddos.....so sweet!!!