Monday, February 7, 2011

Justin, club feet and an emotional rollercoaster

First of all, this pregnancy has been going great overall. I’ve seen Troy go from a 9 month old (when I found out about the pregnancy) to a toddler, now at 16 months old. He’s gone from crawling, to walking and now running everywhere. Everywhere. My inability to work out at the gym as much this time has been made up by keeping up with him.

So onto my story, I suppose. Long post but I’ve got to get it out. My ankylosing spondylitis (arthritis) is in remission again. Pregnancy has been good to my body. This pregnancy has been a bit different than the last. It came as a little shock and not only because I have a child already but the rollercoaster began with the ultrasound to find out the sex of the baby.

We had just picked out a boy’s name (just in case) but have had a girls name picked out for a few years. I was secretly hoping for a boy – I felt like Troy needed a brother! We were in the ultrasound room with the tech, joking around and anxiously waiting for the news. She took her time, as she normally does, then smiled and asked if we wanted to know what we would have a few months later. Yes! We told her and she said we’re having a boy. Then….she said, “I’m sorry to tell you this but he has club feet”. She then said she didn’t see anything else going on with him but the club feet would be something that we would need to speak to the doctor about and find out if we needed more tests or follow up ultrasounds. I asked about cleft palate or any other markings and she said she didn’t see any. She then showed us the ultrasound monitor and gave us some photos. We couldn’t really see the feet on the monitor.

I could hardly wait to get out of that room and look on my computer to figure out what the heck club feet would mean. Stupid move.

On this particular day, my regular ob was out of town and I had assumed that it didn’t really matter who I saw so the appointment was with Dr. H. While Brian and I were in the waiting area, I pulled up my computer, googled “club feet” and the first site was from wikipedia. Bad, bad move. The first baby in the photo was a good 9+ months old with bilateral club feet (meaning both feet – as we found out Justin has) and had never been treated. Then, of all people, Vickie, my regular ob’s nurse, came by. She saw us, stopped and said, “Oh, you guys find out what you’re having today!”. I lost it, totally, completely and utterly lost it, right there in the waiting room. I let it out and began apologizing for not keeping myself together. She grabbed my arm and took me around the corner to a bathroom. She sort of saved me that day. Vickie told me it was going to be okay, that we needed to talk to the doctor first and STOP looking on the internet (oops). Of all things, looking on the internet at that time was dumb.

So we finally spoke to the doctor who told us she didn’t know much about the condition but suggested we go to UAB to a specialist and get a further evaluation. She also suggested I have a blood panel (screen). I didn’t want to have this before with Troy but we were dealing with unfamiliar territory now so I succumbed.

We decided to go to The Olive Garden to “celebrate” as we had when we found out about the pregnancy with Troy and the pregnancy with Justin. I was still an emotional mess. I kept it together for maybe 50% of the time but I felt sorry for the waitress who had to see two grown people crying across the table from one another! Not to mention she was being “trained” so every move she made was being critiqued! Thank goodness we didn’t tell our families what time the ultrasound took place. We needed a few hours to gather our thoughts. We spread the news about having a boy and we tried so hard to be joyful about the news. We decided not to tell a soul about the club feet until we went to UAB. That was a long, long 3 weeks. And, that was the beginning of the roller coaster.

My concerns at the time stemmed from how were we going to handle this? Kids can be mean, adults can be mean. I already began playing out in my mind the questions: “What is wrong with him? Why does he have casts on his legs? What is wrong with his feet? Why are his feet so small?” I also anticipated Troy running circles around Justin. I wondered if I would be able to care for Troy AND Justin – Troy is going to need to be reassured that he’s still our special child. And Justin, well, he’s going to need some major TLC. I found that it is MUCH easier to find refuge in the Lord for problems dealing with ME (as in my arthritis). But, dealing with an unborn child, my own child, is another beast, and not easy. Yes, the news could be worse, you’re right. But, at the time, while I was grateful for the news we had, it also freaked me out! What were we going to do?

Having a toddler was a nice distraction and I began immersing myself in sewing, exercising and researching the condition. I also was in the midst of planning a half marathon in January and a large 5k run/walk in April. I had to do something! I was grateful that we didn’t have any new news. It sounds cynical in a way but I just didn’t know how I was going to handle everything. Yes, I know God has a divine plan in store for us an I held onto that, as tight as I could.

I was at an indifferent time on the roller coaster ride, not sure when the highs and lows would come but knew I was on the track and they were coming, whether I wanted them or not.

At UAB, in the hour-long ultrasound, we found that he did have club feet (duh!) but the doctor also thought that the pulmonary arteries did not cross like they should. All of a sudden, our concerns about club feet went out the door. Dr. Davis said that club feet isn’t a big deal, it’s fairly common so treatment is readily available (I gathered that from my research but it was very reassuring hearing it from a specialist). Onto the heart! He sent us to a pediatric cardiologist who worked us in that day. Dr. Johnson didn’t see anything going on with the heart BUT at 21 weeks, a moving around baby whose heart is the same size as a grown chicken’s heart is apparently difficult to see perfectly. We were sent back upstairs (to Dr. Davis) and were given a recommendation to come back in 6 weeks. He also said that my blood panel came back normal so he didn’t see a need in an amniocentesis. Yes, good news but it was still a bit unnerving. I was okay with the news to come back, Brian was indifferent. Prayer for Justin’s heart became at the top of our prayer list. I couldn’t quite sing through the songs at church without my eyes welling up with tears.

Six weeks seemed like a year but we stayed busy and decided to tell our families (minus the heart details because we didn’t know for sure details). Everyone took it well and was very encouraging. I seemed to be doing fine and felt that we’d go to the next appointment only to find out that we were “released” to never come back. I put myself on the high part of the roller coaster at this time.

I was wrong. At the next appointment, we saw Dr. Biggio who said baby Justin had a right sided aortic arch and his kidney measurements were “on the high side of normal”. Enough to freak me out – seriously. I was very upset, very disappointed and very scared. Yes, I knew that what we had found out could be treated but it was like throwing a softball into my chest without me ready to prepare. Needless to say, we needed to go back….again. It would be at 32 weeks (after Thanksgiving and Christmas). Dr. Biggio said that we needed to consider induction for the birth of Justin and having him at UAB. NOT what I wanted to hear but he did say that the next appointment would tell us this for sure. I was definitely on the low part of the coaster.

We then shared our news with some close friends and our church small group. Prayers were needed….not only for baby Justin but for our family. Having a natural birth with Troy led me to personally feel that God choosing the birth of a child is the best way to go (for me). I had been preparing for a natural birth with Justin and my heart longed for the same. Praying was very, very difficult. I was mad, sad and very disappointed. I still prayed and I cannot remember where I found refuge but it was something about God knowing my heart, no matter what, and all he wants is for me to talk to him, mad or not. So, that’s what I did. It was definitely the most difficult thing I’ve done so far. Our close friends and family prayed for Justin, for healing and for a miracle. I loved hearing people tell me what they were praying for. My step dad was actually so sincere and sweet and would tell me how he prayed for Justin.

We needed the distractions of Thanksgiving and Christmas. I was on the very low part of the roller coaster by this time. One day, before the next appointment, I had what I guess is an epiphany – I felt God tell me while praying to not worry. That sweet simple verse in Philippians 4:6 not to “be anxious about anything but in everything, by prayer and petition, with thanksgiving, present your requests before God.” I felt fine about everything. I knew our child was a miracle anyway and would be just fine. Then, that night, I told Brian that I was okay, that things were going to be fine and I knew that this has happened to our family for a good reason – WE can handle it with God’s guidance. He planted this baby and He wants us to raise this sweet child. Brian told me that his parents shared the news about Justin with their close friends. Bo, one of the men in the group, stood up and said let’s pray for them right now. They were all, I think, in my in-laws living room. The whole group stood up, held hands and prayed for our unborn son (insert tear here). Words cannot describe what that means to me…..and I knew that their prayers overtook me, causing me to feel a complete peace about Justin.

Then, the first week in January, we headed back to UAB. My mother met us there since she is a cardiac nurse and knows more about the heart than us. Meeting with Dr. Owen proved to be fairly good. He also said that the club feet matter was not a big deal and it happens quite often. Spending a long time, on the heart, he pointed out that he thought the left and right ventricles were not of the right size. A right sided aortic arch was not found by him. At this point, we weren’t sure if Justin should be born at UAB and whether or not I would need to be induced. He looked at the heart for a long time and said he felt more comfortable if we would see a pediatric cardiologist again before making a determination on where the baby should be born. As he was about finished, I asked him about the kidneys – he checked them and they were FINE. First Praise!

The pediatric cardiology team couldn’t get us in that day so we had to go back the next day. Should have been unnerving, right? Wasn’t a problem for me at all. I just KNEW it would be fine. We went by The Fresh Market to buy some goodies for the drive home. Had I been sad, I wouldn’t have wanted to stop….but I did. So we shared the news with the people who asked and I know they prayed. We headed back to UAB the next day, met with Dr. Pearce who said he also didn’t find the right sided aortic arch but also found that while the ventricles weren’t of the same size, he felt that it was totally normal. He said that if we were him, he would feel completely comfortable with having the baby close to our home and performing an echocardiogram after birth. Second Praise!

We left elated. Brian was visibly excited, I was exhausted. I think I was emotionally exhausted but also had been lying on my back for an hour, got light headed and needed something sweet – and FAST. We went back to The Fresh Market, got some snacks, cookies and an apple pie to celebrate. I felt better soon after that.

So now I’m on the high part of the roller coaster.

What now? Well, we know that club feet is found in 1 in 1,000 babies. Not quite as uncommon as I thought. And, we have a relative, an uncle, who had it. His was also idiopathic and bilateral. He walked fine after his treatment (over 50 years ago). Treatment has come very far since then. I have no trouble praying for Justin’s “sweet feet” as I call them. They are precious. I plan on documenting what happens with his feet from the time he’s born until I don’t want to talk about it anymore. I have full faith in my Father above that my child will be fine, he will walk just fine and his doctor will be exactly what he, and his parents, need.

I know this is going to be a bumpy ride. He will be born with feet that are crooked (for lack of a better term). We will travel to Birmingham once a week for a few months so that the doctor can manipulate his feet and legs into the proper positioning. He will wear casts during those first few months. The casts will reach from his toes to the top of his thighs which means Justin won’t be able to wear certain clothes. Gowns will work better with the casts (not a bad thing for me since I have made several gowns for him). Once the doctor(s) decide his manipulation has gone well, he will have his Achilles tendon cut (called a tenotomy or release of the tendon) and his legs/feet will be casted for 3 weeks. Once he comes out of those casts, Lord willing, he will begin wearing braces. I thought Forest Gump-ish but no, the braces will be on his feet only and will have a bar attached to the two shoes on his feet. Think of a wake board but not quite as cool. Everything will depend on the severity of his condition. I’ve learned that there are 6 levels of severity, with 6 being the most severe. We are praying for as close to 1 as possible. Of course, I know that at any time, God can cure the condition. This is if he chooses to do so. I think now that we needed to deal with the potential issues of the heart just so we could put into perspective that club feet is minor – SO minor!

Strangely enough, I’m grateful for this emotional roller coaster. Troy has really helped with being such a sweet, active and funny little kid. God knew what he was doing by putting Troy into our lives. He is still perfect for our situation. I know he will be a great little brother. I’ve learned NOT to feel sorry for children with certain conditions. I feel that it is the LAST thing that a parent wants. I want my child to be normal, fine and without any issues. But we don’t get to choose our destiny…we are given what we’re given. God wants us to use what He has given us, use our talents and it is all for his glory in the end.

You know the saying “When life gives you lemons, make lemonade”? Well, we’ve been given some lemons (something sour) but we will do our best to make it sweet. As much as possible anyway – I like to eat lemons so I’ll eat some of them, too.

Please pray for our sweet little Justin. For a healthy boy, swift and safe birth, and for his future treatment. His parents could use a few prayers, too – whatever you see fit.

If you read all of this, thanks. I needed to get it all out.

12 comments:

Kimberly said...

Elyse I will definitely say some prayers for you, Brian, and your sweet unborn baby Justin. God never gives you anything you can't handle..he picked the perfect parents for this baby.

Helen said...

Elyse,

We will be praying for you and for sweet little Justin. Let me know if there is anything Bill and I can do.
Helen

Brooks Family said...

I read all of it, and thanks for "getting it all out!" I will absolutely pray for baby Justin and complete resoration of any cardiac abnormalities...I will also pray for peace for you and Brian, and widsom and guidance for the doctors caring for sweet Justin and his sweet feet! To level ONE!

Josh Agerton said...

Elyse - Thanks so much for sharing your story here. A blessing to all of us to have the opportunity to join you Justin, Brian and Troy on this journey.

You are not alone - we are with you and praying dearly for you.

"For I am the Lord your God who takes hold of your right hand and says to you, 'Do not fear, I will help you." Isaiah 41:13

Prayers & Faith - Josh

Brooke said...

When I saw you at Zach's party, I was thinking of how much I admire you. You always seem so busy, but also very together. I was thinking of how strong you must me to handle your "full plate" of activities. After reading this, I am even more in awe of you. Your strength is something that God has blessed you with and I hope you are aware of how truly strong you are. We all have times where we feel weak, but God has given us each the strength we need to handle whatever comes our way. I pray that God will bring you peace as you await the arrival of your precious Justin. Thanks for being such an inspiration!

Brooke Beddingfield

Caroline said...

Oh, Elyse, I had no idea you had so much going on! God really is amazing and you and your hubby are so strong. On the plus side, Troy will be a strong advocate for his little brother. He may "run circles" around him for awhile, but he will come to be Justin's biggest fan and will be so protective of him. We'll be praying for you and yours!

Courtney and Brad said...

I will be praying for Justin and your delivery...i'm so glad that you have found peace...Phil 4:6 is my favorite verse...i have to say it to myself daily!

Carla said...

Elyse,

I read it all and will be praying for Justin and also for the doctors who treat him once he arrives! You are a strong woman and I'm glad to call you my friend. :)

The McDougald Family said...

Elyse,

Saying prayers for all of you! I admire your faith and courage thus far. Our great physician will be holding your hand along the way. Please let me know anytime during this journey that you are in Birmingham. I will be glad to do anything or help however I can. Please keep the updates coming!

All my love,
Ginger

The Parrish's said...

I really didn't feel like crying today ELYSE! Thanks for the update, it's nice to get things out and also good to get things off your chest. You and Brian will be the perfect parents to Justin and continue to be for Troy:) I will pray that you have a safe and happy delivery and will continue to pray for Justin's healing:)

Donna said...

Justin is so blessed and loved. I love his "sweet feet" already. What a roller coaster Elyse- thank you for sharing your story. God bless your precious family and give you peace and strength. Love you!

Holly-- The Storm Chaser said...

Elyse,
I read this a while back, but I was reading from my phone, and it's super hard to comment from there, so I never did. I just wanted to say that you all are in my thoughts and prayers.
Casey Carter (she's been one of my best friends since elementary school, and I actually fixed her up with Collin! :)) and I were talking about you today and how much we admire your strength and your positive outlook on everything. We will be praying!