Thursday, July 5, 2007

IAN...Part 2

As time came for the second surgery, we were excited about the possibilities this would open up for Ian. He was still having to eat every few hours and still choked quite a bit, so he had to be watched constantly. But, we were managing fairly well. We checked into the hospital when Ian was 14 months old for a cleft palate repair and a lip revision. They would completely close the palate and do some refining work on the nose. FYI: When we are being formed in the womb, our faces form from the outside by the ears and meets in the middle, and closes together along the 2 lines above the upper lip and the middle ridge in the palette. When there is weak muscle or some other problem, instead of the 2 sides closing together, they grow up to attach to a stronger tissue. This is why the lips of a child with cleft curl up. Everything is there that is needed for a perfect lip, it's just not in the right place. In the palate, the tissue that is needed to close the palate, rolls up along side the gum. As in the lip, all the tissue that is needed to cover the roof of the mouth is is just a matter of unrolling it and sewing it in place. Sound easy? Imagine doing all this in the mouth of an infant. These doctors are truly miracle workers. When I asked his doctor how he was going to work in a mouth so tiny, he told me that I did not want to know. I asked no more about that. Ian was taken to surgery, and we were told that as soon as he could drink from a cup and keep liquids down, he could leave the hospital. [We were so blessed in the fact that my mom's family all still live within 2 hours of the hospital. We were able to stay with my Aunt Marie for all of these surgeries, and still be close enough to get back to the hospital if needed. She has been a Saint to open her heart and home to us all these years.] When Ian came out of surgery, we were shocked. He looked awful. He was swollen so badly and there was a long string attached with a stitch running through his tongue. This was in case of swelling, his tongue could be pulled back to keep his airway open. He was again in arm restraints...and he was mad! Drink from a cup..".no, thank you. I will have nothing. Just do NOT touch me!" All he wanted to do was lay in our laps...but nothing to drink. We started by giving him chocolate milk( his fav) through a syringe. He would swallow a few drops but nothing else. Now this hospital stay was particularly nerve racking...he could not use a sippy cup...he had to drink from a regular cup! Mercy! We went round and round for a few days and then I decided I had had enough. I was secure in the fact that if I could get him back to my aunt's house, I could take care of him and see that he drank. So, I'm ashamed to say...I lied. Yes, I did. I told them that he was drinking from a cup, and he wasn't. Now, I do not recommend this, but I also knew that I had sense enough to take him back to the hospital if I could not do it at home. So, off we went. Back to my aunt's house. Now, Ian was not cooperating with my plan, and I knew he had to drink. CAUTION: This may sound a little drastic, but it worked, and we all lived to tell about it.

Please don't judge me. In some situations, you just have to do what works until something better comes along. The team of three, Don, Aunt Marie, and myself would lay him on the floor. Aunt Marie would hold his legs, Don would hold his head still, and I would straddle his chest with a syringe full of chocolate milk. When he would open his mouth to cry, I shot in a little milk. It worked. The milk stayed in...but he was not a happy camper. We managed to get a few ounces in every few hours and we did this around the clock for 3 days. Finally, I think he just gave up and decided it was going to be the cup or the floor feedings. From then on, he drank from a cup pretty well. He was still in arm restraints and unhappy...but at least he was eating. After 2 weeks, the doctor said we could come home, and could start on some soft foods. And life became much easier after that. He still had a few places in his palate that would leak, but for the most part...all was well.

He started in speech therapy at the age of 2...he was ready to talk. And he has never talked with a nasal sound. Don and I felt that it was as important for him to sound well as it was for him to look well. Since the cleft extended through the gum line in the front of his mouth, much, much orthodontics had to be done. He has had bone grafted into gum twice and began wearing braces when he was about 6, until his second year of college. Can you imagine? As I said before...everything was there, it was just in the wrong place. Teeth came in in the strangest places and had to be moved or pulled. It was always one procedure after another. All along the way, we would continue to shape his nose or refine his lips. He had one of his hardest surgeries while he was in high school. They took cartilage from behind his ear and used it to build up his nose. More bone grafts. In total, about 10 major surgeries....visits to UNC every year and countless trips for orthodontia treatment with a doctor here who, bless God, knew the doctor in N.C. and was able to keep within their guidelines and time lines. His last surgery was in November of last year when the oral surgeon tried once again to close up that last little hole in his palate. But, it still didn't work, so Ian is just going to have to live with that. The doctor said that He could straighten his nose a little more, if he liked...but Ian decided that he was happy with his look, and did not want more reconstruction. He had veneers put on his teeth last year and they are beautiful! Talk about a MILLION DOLLAR SMILE!!!!!!

His heart condition has given trouble off and on since the beginning. Eventually, we had to have surgery for it. First, in Birmingham. This procedure did not seem to help, so he had to have it done again, but more drastic. He is much better now, but will still have a few break through attacks, but these are usually managed by meds.

Now, it is devastating when you see your baby for the first time and you see anything less than perfection. But, our prayer to God was that He would give Ian a personality that would outshine his facial imperfection. That he would be outgoing and happy, and never let this defect be a hindrance to him. I am here to testify to you that God answered our prayers abundantly more than we asked. From the very beginning, Ian has been the kind of child who was going to be your friend...whether you wanted him to or not. People were drawn to him and he has never had a problem talking to anyone. We tried to give him all the tools he would need to deal with this as he grew. Even talking about what others may say to him. I was so proud when his kindergarten teacher shared this with me.... " several of the kids noticed Ian's scar and started asking him why he had a scar on his face. Of course, as kids do, when one starts something, they all join in. Soon, they were all talking about Ian's face. The scar and the nose, which was crooked. He asked me if he could talk to the whole class at one time, and I said yes. He stood up boldly and said, "when I was born, my face did not finish growing. So the doctor had to operate on me and put it together. That is why I have a scar. Now, don't ask me about it anymore, it just like any other scar." And with that, he sat down...and nothing more was ever said. He has always had many friends and been a leader among his peers. He loves the Lord, and seeks to serve him in all he does. He has finished college at Samford University and is in grad school there now. God has blessed us all with the gift of Ian. He has been stubborn and willful at times, but as a Mom, I can say that I have never worried about him getting into trouble or taking the wrong path. When he would go out as a teenager, I did not fret or worry. He has always surrounded himself with the highest caliber of people. He has friends of all ages and has always been one to stick up for the underdog...even when it was not the most popular thing to do.

I have to give thanks to my wonderful family. My parents , and my late Mother-in-law, have always been at the ready to help in any way. With 2 other boys, there was always much to be done. And my sister, Joy, has stepped in numerous times to do whatever was necessary. Even though our lives were turned upside down so often, God provided a built -in support system to always be there for us. I also have super friends that I can call at a moment's notice.

O.K. This is getting mushy, but I wanted to say all of this as a testimony to God who blesses us so richly above what we deserve. Even when things start out uncertain...He can work it all out to perfection. "He has made everything beautiful in His time." Ecclesiastes 3:11

When I asked Ian about including early pictures of himself, he did not hesitate. "Sure, " he said.

So, I offer you this link to see some of the changes he went through.


Musicaljean said...

Wow, I am sitting here waiting for Lisa to arrive and had time to read all about Ian. I am in awe of you. I am in awe of him. And I am in awe of the Lord. This story is so, so touching on so many levels. And then looking at the pictures just has me in tears. He is so handsome. All I can say is Wow again.

Dianne said...

Wow Tonja. I am in total agreement with Jean. I am humbled and astounded by this story too and am amazed that the doctors have been able to do so much. To look at his picture now, you would never know he's been through so much. It's just incredible...and what a sweet thing for your pastor to say, "You are highly favored by our Lord. He has chosen YOU to be the mother of this baby. How He must trust you!" That statement is obviously very true! You are an awesome woman and Ian is lucky to have you for his mom.

justabeachkat said...

I've just viewed the slideshow and I too am amazed at the skill of the doctors. Seeing him today you would NEVER know all that he has gone through. As a mother, I can't imagine how hard it was for you. I just keep saying "wow!".

Thanks for sharing. Thank Ian too for allowing us to hear "the rest of the story". Thanks Tonja.


Lynne said...

Thanks for sharing this story about Ian. Like Kat, I'm amazed at the success of the surgeries.

You are a very special mom.

Dawn said...

I came over to visit you because you stopped by my post about Tamara the other day. I am so glad I came in time to read about Ian. What a great, wonderful story of redemption. What wonderful doctors, nurses, pastors, aunts, friends. He sounds like a wonderful young man and you sound like great parents. Thanks for sharing this.

I don't know if you've been to my site before, but my son and I did a series on his journey through addictions by the grace of God, and it's linked on my sidebar, if you are interested.

We're going to Kona on the Big Island for our 35th and can hardly wait - we were there 10 years ago for our 25th and have been looking forward to returning.

Come back again!

Leah Belle said...

What a handsome son you have! Thanks for sharing this story. What a testimony to God's grace. I know this has all been very hard for you to go through, but I'm glad you can give glory to God for His goodness through it. Thanks for sharing pictures too.

Mary said...

Early Birthday wishes to Ian in case the 10th slips by me!

Tonja - your story of Ian was so touching and it's just amazing what the UNC doctors have done over the years. Ian is such a fine looking young man..........and very intelligent by the sound of it. I know you are so proud of his accomplishments and I'm certain he is so thankful to have you as his loving Mom, and the other members of your remarkable family who have helped him through the difficult times in his young life.
Love to you all - you are an inspiration to all of us who think we may have problems.

Darcy said...

First off, my mom, Patty, led me to your blog and your story of Ian.

Posts and blogs about children with clefts always hold a special place in my mom's heart, and mine, because YOUR story of Ian, was pretty much MY story with my Rachel.

Reading Ian's story brought so many emotions to the surface for me, and for my mom. While I am still in the midst of our journey with Rachel, as she is only going to be 3 next month, she's had her lip repaired since she was 5 months old, and her palate repaired since 14 months. The obvious signs of her 'face being broken' hasn't been visable for some time.

Rachel still has surgeries to come, and challenges ahead, but for now, my biggest challenge with Rachel is trying to potty train her. LOL.

Ian is a very handsome young man. It's encouraging to see how great he looks now after his journey is complete. Thank you for sharing Ian's Story.

idowens said...

Love ya, Mom :) Thanks for all your hard work back in the day...I think it was all worth it, don't you? :)

Kim said...

Tonja, it didn't take much time around you to know just how special you are. You have so much wisdom to give and I only hope to have more time to learn from you. I have just read the stories of all three of your boys and all I can say is wow! You have been through so much. You recognize that God has been with you through it all, but I want you to know that everyone that comes in contact with you can see it too. You glow with a glow that must be simular to the glow Moses had when he came face to face with God. There is no doubt that you walk daily face to face with God. I feel very honored to have the opportunity to work with you and to have had you touch my life.