Wednesday, April 7, 2010

Wyatt's Story

So just to get everyone caught up, here's the story of Wyatt so far. There aren't any shootouts at the OK Corral, but that doesn't mean it hasn't been a harrowing ordeal. There have been times when it seemed like a gunfight might have been easier to handle compared to the emotional roller coaster we were on. But that's getting ahead of ourselves.

The Beginning:

This pregnancy started very similarly to our other two. We found out we were pregnant in July, Julia had an easy first trimester, and we went in excited for our 18 week ultrasound. The doctor was just as excited to tell us we were having... another boy. Yay for variety. Julia was not encouraged when I suggested that our three boy family would be like the Taylors from Home Improvement. I would be like Tim, only more likely to kill myself using power tools.


90's TV show references aside, after the appointment we joked a little bit about God's sense of humor and then agreed that we were blessed. They could all share a room and we wouldn't have to splurge on a bunch of new clothes. Besides, three boys would be fun. Right? RIGHT? Julia began looking for a therapist...

Warning Signs:

We got a call from the geneticist's office shortly after that ultrasound. Apparently, there were some issues and they wanted to discuss their findings. Wyatt's long bones (his femur and humerus bones) were measuring fairly short for his stage of development. They had also noticed an irregularity in his heartbeat. It was probably nothing, the doctor said, but they wanted to be sure it wasn't something like Down's Syndrome. We had an amniocentesis performed to check for some of the indicators of a genetic defect, but all the tests came back negative.

We also saw a pediatric cardiologist about the heartbeat. He told us that Wyatt's heart looked very healthy and that the irregularity was just a random skipped beat every so often. It would probably go away on its own, but even if it didn't, there was nothing to worry about. Given this news, and taken in conjunction with the negative test results from the amnio, it seemed like this was just a bump in the road.

Then They Dropped the Bomb:

The next two ultrasounds, however, did not go well. It was apparent on the monitor that his femurs were still VERY short, and they now displayed visible signs of bowing. The second ultrasound seemed to show that Wyatt's left femur was sharply bowed, so much so that it appeared broken. Could you imagine swimming laps in a pool and having your femur snap in half? That's essentially what had happened, which meant that there was something clearly wrong with his bones. The doctors told us it was almost certainly some form of skeletal dysplasia. They sent us to a specialist at Cedars-Sinai in Los Angeles to examine him.

I will never forget that visit. The doctor used a detailed ultrasound to show us all the indicators, and explained to us that our baby had osteogenesis imperfecta (OI), also called brittle bone disease. She went on to say that because of the bowing of the bones, their extreme shortness, and the suspicion that there were fractures, it was most likely a very severe case of the disease. Wyatt's bones were abnormally soft and brittle, which meant that his ribs would not develop properly, and which would in turn hinder the development of his lungs, especially if there were rib fractures. The doctor gave our baby a very low chance of surviving, even suggesting that we consider aborting the pregnancy. Through our tears, we told her we would not be taking that course of action.

I cannot describe the devastation that Julia and I felt at hearing this news. The worst was the feeling of helplessness. As a father of two little boys, some of my favorite moments are the ones where I get to offer comfort after a fall and then help them get on their feet and back out on the playground. But this was my little baby, he was broken, and there was nothing I could do about it. Julia and I had to let it sink in that because of some random, unforeseeable alteration of Wyatt's DNA, he was, at best, going to be born with stunted limbs and in severe pain. He would probably never walk or crawl. That was the BEST case scenario.

The drive home from L.A. was at once interminable and fleeting. So much raw emotion coursed through us. How could this happen? WHY would this happen?

The Miracle Starts:

When we got that prognosis, we had about three and a half months left in the pregnancy. These should have been months filled with tears, despair, doubt, and emptiness. I won't lie to you and say that we didn't experience those things. We did. I distinctly remember lying awake in bed many nights, asking God to let our son live, and then becoming angry with myself when the thought entered my head that it might be better for everyone if God didn't allow that. Those were not good nights. But we experienced those negative feelings to a far lesser extent than I imagined. And I attribute that entirely to God's peace in our lives.

Immediately following the bad news, we decided to reach out to our family, friends, and church and ask for as much prayer as they could muster. I am humbled by the response we received. So many people sent us emails of encouragement and told us they were faithfully praying for Wyatt, Julia, and I, as well as Ben and Micah. As one amazing display of God's work in our lives, when we went back to the pediatric cardiologist for a follow-up appointment, not only had the heartbeat irregularity completely disappeared, but the cardiologist laid hands and prayed for us right there in the exam room. Simply incredible. Because of the prayers of these people, we were able to continue with our lives on a somewhat normal basis. We had a great Christmas. Micah's second birthday party in January was a blast.

As for our own prayers, every night when we tucked Ben and Micah into bed, we prayed that if it was God's will, He would heal our little baby. If it was not in His will, then we asked that He grant us peace and love, and help ease any pain Wyatt might be feeling. I prayed some version of this prayer countless times during those months.

About a month before his due date, because we wanted to be sure that we were making the right decisions regarding Wyatt's birth, we went back to see the specialist at Cedars-Sinai. The doctor reiterated the diagnosis of severe OI, but gave us some hope in that his chest might be big enough to support functioning lungs. It wasn't certain that he would live, but at the same time, the other option wasn't a certainty either.

The Birth:

Wyatt was born at 1:53 PM on Wednesday, March 17th. The first few seconds after he was born felt like hours as I waited for him to breathe. But then he took his first breath, the doctors sucked some fluid out of his lungs and put a breathing mask on him. We had agreed that if he could not breath on his own, we would not use a ventilator, as that would most likely break his ribs and cause more pain. As it turns out, it wasn't necessary. Wyatt was alive, and he could breathe on his own!

The doctors took him to the Neonatal ICU for monitoring and he looked great! He only needed extra oxygen for a few hours, and he ate like a champ when the nurses gave him some formula. The doctors took x-rays and found zero signs of fractures, even on his left femur. Yes, this baby, who months before had bones so soft that they appeared to break in the womb, had incurred no fractures during a natural birth, was in no pain, and was breathing without assistance. Praise the Lord!

He stayed in the NICU for 24 hours as a precautionary measure, but we got to bring him up to our room the following day and take him home the day after that. There were some interesting experiences with the nurses, since we needed to make sure that they handled him as gently as possible (we scared one nurse to the point where she almost refused to touch him, while another nurse was adamant that because he survived birth, he was obviously just fine). But there were no incidents and we got him home safely.

Current Status:

So what happened to the OI that we were so sure of? Nobody knows right now. The geneticist we saw immediately after leaving the hospital is stumped. Because of the lack of fractures and his comfort level (most babies with OI greatly dislike being handled because it causes them pain), she is skeptical that he has OI, unless it is a rare form of the disease. Wyatt's legs (and arms to a much smaller extent) are still bowed, so there is obviously something going on with his bones, but no one seems to know what. There are currently blood tests being done to determine whether OI is still the most accurate diagnosis. Hopefully we will receive the results of those tests within a few weeks.

Wyatt is totally unconcerned with all of this as he eats, sleeps, poops, and grows (quite the life of ease, I tell you). He is doing just fine! We still handle him very gently as a precaution, but he seems comfortable being held. God has done a miracle in this child! We prayed for healing, and it happened!

Looking Forward:

We have quite a few doctor's appointments coming up, as different specialists take a look at him to attempt to nail down a diagnosis and to determine if any treatment is necessary. We'll post updates on here as those happen. If you feel called to pray, please pray that God would give wisdom to these doctors. And pray that God would continue his healing miracle in Wyatt so that he would grow like a normal child.

Also pray that God brings people into our lives with whom we can share this incredible testimony. I can't even describe how amazing it is, after all that we went through, to sit here holding my little child as he sleeps. Our miracle Wolf.

9 comments:

  1. Wow.

    I am so happy for you guys. I am not sure what else to say. Thanks for sharing the story.

    On a side note, Dan, you really ought to think of writing more. You are quite good at it.

    Love you guys. I'll see what I can do about getting down there for a visit sometime this year.

    Ben

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  2. Thanks Ben. Good to hear from you! You're welcome down here any time!

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  3. WOW, Praise God! This is an absolutely incredible display of His power!!! We will continue to keep you in our prayers.

    And, I agree with Ben's comment above, Dan - you are a good writer.

    Take care, guys!

    Love, katie gladding

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  4. I am a new addicted to quack user. Am moved by your story. Just went through cancer treatment myself and can tell you (as you have found) that prayer works! Please check out caringbridge.org so that axeman23 can get the whole world involved...with prayer if nothing else! My best to you, originalsportsmama

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  5. Katie - Thank you!

    Originalsportsmama - Thanks for sharing! I am glad you could witness the power of prayer like we have. We serve an amazing God. We will definitely check out that site.

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  6. Amazing, God can do awesome things! I have kept Wyatt, Julia, you and the boys in my prayers and will continue too! I also pray for the Grandparents! I will pray God open the eyes of Wyatt's doctors and guide them in his treatments!
    Take care and hugs!
    Aunt Irene

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  7. Wow Dan... I had no idea... I got an email from OJ's mom and she told me to go to your blog.
    I will definitely pray for you and your family.
    Be strong and know that we care. Love, Neil & Janice

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  8. blog is too gud... nice article i agree with your post and thanks for giving information.....

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  9. Thank you for sharing your story.. that helps me out. A Mother of one and 25 weeks along with another baby boy with similar complications to your baby based off our ultrasound. Praying for miracles!

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