Helicopters, Commercials, & God

I am what my wife, family, and even co-workers would say is a very laid back person. I get excited for vacations, UK basketball games, and eating or cooking barbecue. I stress over very little and I only get mad at left lane drivers (looking at you Indiana) and windows computers (please just get a Mac, your excuses are becoming annoying).

Ever since Reese came into our world, my stress still hasn’t jumped as one would think, but my worries are different. For years I have made fun of helicopter parents. You know, the ones who follow their child from room to room and are always within arms reach. They constantly worry over every tear, every cry, and every runny nose. They strap them to leashes when they’re out in public and won’t let them play anywhere or with anything that could possibly get the child hurt.

I have become the helicopter parent. At least from the worry and medical sense. I try to ask everyone who visits Reese if they’ve washed their hands, I check on her constantly while she sleeps, and I pray no one I come in contact with is carrying some super bug that could hurt my precious girl. Reese is medically fragile with a capital F. Sure, she’s gotten healthier and stronger the last 6 months. It’s easy to see how well she’s progressed and think everything is going to be fine. Many people love to tell Elizabeth and I this. Sometimes I even start to believe it.

Yet it only takes one look at a facebook group we belong to of parents who have children with her genetic disorder, to understand things might not ever be normal. Their are heartbreaking stories of the epilepsy, the hospital visits, and the many therapies it takes for our children to develop. Just last Friday, I received an update on a 5 year old boy who has the same genetic disorder of Reese who passed away. Just reading his story had me crying at my desk.

Last night Reese started getting fussy and had lots of mucus in her nose and we used our suction machine to help keep her clear. Our big worry is it getting into her lungs and pneumonia returning. We have suctioned more mucus out of her in the last 12 hours than we have in months. She’s very fussy but has no fever, yet we can tell she doesn’t feel well. This is where we had to make a decision, do we go to our regular AMAZING pediatrician or take her to emergency room? With this much mucus, we decided a trip to the ER was needed to make sure everything was ok. We’ve been down this road before and waited for a fever to come and when it finally does, it jumps quickly and without warning.

So off to Kosair Children’s Hospital we went. As I drove her there, I was reminded of a commercial we see in our area for Kosair. It’s on constantly and it’s of an elderly man who went to Kosair often when he was a little boy and grew up to be a doctor. He ends the commercial with “I’ll bet I’m one of the oldest Kosair kids around.” I’ve seen that commercial a dozen times and every time I’m reminded, I have a Kosair kid too. I never thought my life would be that way. Spending weeks at a time in a children’s hospital was so foreign to me. I’m a control freak and I have always hated hospitals. These days I walk into an ER I’m no longer intimidated by the machines, nurses, and doctors. Today I walked in and within 10 minutes of triage the nurse said, “Well you sure know your daughter’s details.” As I write about it now, I’m amazed at how God has humbled me. He’s reminded me that it’s not about me and I’m capable of way more than I ever thought.

Thankfully, our ER visit was a short one. Reese has an upper respiratory infection along with an ear infection. She got another x-ray and some suction at the hospital. We’re now home with antibiotics and lots of rest. We pray it doesn’t get worse and this infection passes. We pray for healing and put our trust in God’s plan. May his glory always be revealed in everything we do.

Day of Days

(Warning, before you proceed, please know that we do post pictures below of Reese after surgery. We’ve always thought of this blog as a way to help other parents who someday might go through something like this. Nothing can prepare you for seeing your child in this condition, but we feel this blog must be as transparent as possible in order to portray the most realistic journey we’re taking. Thanks)

Today was “The day of days” for us. We were told this day would happen back in May. Due to many different setbacks, it’s been postponed 2 different times but we finally got this heart surgery done. People have asked me many times the last few weeks how I was doing and how Elizabeth was doing. I think both of us just wanted to get it over with. I wasn’t nervous until they finally came to take her back. Elizabeth hugged her and kissed her, then I picked her up, got my kisses and literally handed her over to the anesthesiologist. I don’t think Elizabeth saw me but I had tears in my eyes. Handing your daughter over to a complete stranger so they can cut her open, stop her heart and lungs so they can fix a hole….it’s almost just too much to handle.

The hole in Reese’s heart was almost a half inch long and her heart isn’t much bigger than that! Surgery was the only option and needed to be done sooner rather than later. They took her back a little before 1pm and we waited quite a while before receiving our first update. Prep for this type of surgery takes over an hour, so we weren’t told till almost 2:30pm that they had begun. Both of our families were with us and we had quite a few visitors stop by for support. In fact we had 4 different churches send either a minister or chaplain to pray and talk with us. God is good!

The first cardiologist came to see us around 3:45 and let us know that everything went great, in his words “It was an A+”. We’re a big fan of his, we’ve had him since her first hospital visit and he has great disposition and always puts us at ease. He’s the doctor who reads her EKG and signs off on each one before they start the surgery and the one after they’re done and about to close her up. We breathed a huge sigh of relief but waited for the official word until after her surgeon arrived. He came by just 15 minutes later and pronounced the surgery a successful one we all celebrated in our own quiet way. It was such a relief and I knew God had answered some serious prayers.

We now had to wait another 2 hours before we got to see her. They took her into the ICU where she’ll be for the next 24 to 48 hours and Elizabeth and I were finally allowed back. I had been told by another heart surgeon, that nothing can prepare you for what you see when you go back to the ICU. Our daughter has spent almost 6 weeks of her life in a hospital. We’ve seen almost anything they could throw at us as far as machines, cords, beeps, lights, etc. Then we walked into this.

As you can see, it wasn’t pretty. She’s a little fighter and by 8pm, that ventilator was out of her mouth! This was one of the bigger concern for doctors due to her chronic lung disease. We had been warned that she might have to have it in overnight or even longer than 24 hours. Instead, just 4 hours after her surgery, she had her eyes open and was breathing on her own. Praise the lord!

So now we spend the next 24 hours getting each and every line or wire running into her body removed one by one. If they all come off tomorrow and things are looking good, then we move into a regular room. If it takes a little while longer to remove each one, then it will be Friday before we’re out of the ICU. She will be here another 4 to 8 days depending on her recovery situation. Our main concern is avoiding infections and getting her pain down to a tolerable level.

For those who’ve asked, we welcome any and all visitors. We’ve learned from our past hospital visits to take it easy, take breaks, go home for rest and don’t wear ourselves out staying at the hospital 24/7. We have a great support system with our family and friends and will never able to thank you all enough for your help. Along with us, the grandmothers will sit with her and so will friends. Tonight is my night to stay with princess and Mommy pulls tomorrow night’s shift.

Once again we are so thankful for everyone’s amazing prayers, texts, phone calls, FB posts, tweets, and visits. Someone even managed to sneak in a Paul’s Fruit Market gift basket! That person knows who they are and we are so thankful. We of course will continure to update this blog, Facebook, and you can even find me on twitter for any up to the minute updates @unclekyle

We thank everyone but most of all we thank our Lord and Savior Jesus Christ. Without him, we wouldn’t even be able to understand why all of this has happened and how to handle it. If you don’t know Jesus, ask Elizabeth and I about him sometime. He loves you just as much as he loves our precious Reese. Accept him as your savior and your life will change forever.

Therefore, if anyone is in Christ, the new creation has come: The old has gone, the new is here! 

2 Corinthians 5:17

Quick update and Reese will be on TV!

Just a quick update. Yesterday Reese was released from the hospital, so it was only a one night stay for observation. They wanted to avoid dehydration and aspiration of her lungs. So far, her lungs are clear and she’s eating well. They sent her home on a strong 3 day regiment of steroids. She’s been on these steroids before and when she is, watch out! She has super energy, she grows more, and she eats so much we can barely keep her full. Reese has almost always slept through the night, but when she’s on steroids, she wakes up in the middle of the night for another bottle. Thankfully, we’re only on the steroids for a few days.

Also, today at 4pm, our family will be featured on WHAS11 News for a story about our journey. A few weeks ago they filmed her at her medical daycare, Sproutlings, and then they came to our home for an interview. They also did an interview with her neurologist, Dr Puri. So we’re excited to see how it turned out and hopefully it will be online soon so we may share with everyone on here.
Later this week we’ll have an update from Elizabeth on where Reese stands developmentally and maybe some fun pictures are coming too. Once again, we appreciate everyone’s prayers! Now we can focus on Reese’s 1st birthday this Wednesday!
Kyle

Back in the Hospital

We’re in the Emergency Room at Kosairs and they’re going to admit our little one for a viral infection. She’s running a pretty good fever and is very uncomfortable. Right now they don’t think it’s pneumonia but they want to observe her and rule out all possibilities. Say some prayers! We’ll keep you updated through this blog.

Kyle
Saturday evening:  Reese has a viral infection in her lungs.  They are monitoring her–she seems to be getting better.  We are praying that she gets to come home tomorrow (Sunday, July 22nd).  We truly appreciate everyone’s prayers.

Elizabeth

This is our life

The first time I ever heard the phrase “medically fragile child” was during our second week long visit at the children’s hospital. One of the doctors said it and it stuck with me. We are now parents of a medically fragile child. What’s considered normal for our friends and their children is not normal for us. Their are rules and certain steps for Reese that we must take everyday to avoid another hospital visit. She has a team of doctors and nurses who know us and her by sight when we visit the hospital. She’s part of a program at the hospital for children who visit frequently at long periods of time and face complex medical care. We have a loud oxygen machine in the middle of our home with an oxygen hose long enough to stretch to any room in the house. We travel with oxygen tanks and they must be delivered and picked up every week. We have to take tanks to her babysitter and to the grandparents homes. When their is an air quality alert, we can’t even take her outside. We had a beach vacation planned at the start of the summer and we went without her because the doctors said she couldn’t travel through this summer.

Each morning and every night she gets a breathing treatment, we use a suction machine to take out any mucus in her nose and throat, she gets 3 to 4 medicines twice a day, and then we feed. She doesn’t eat like a normal baby, an 8 ounce bottle can sometimes take her up to an hour to eat. Each night we must put a pulse/oxygen machine on her with the loudest, most dream interrupting, sit straight out of bed, alarm on earth. It lets us know if her oxygen or pulse dips below safe levels established by her doctors. My wife and I have these routines down like a science, each of us has certain responsibilities and we work together like synchronized swimmers. It’s a 2 hour process each night just to get her to sleep and for us it’s the new normal.

A fever for Reese can mean many things and teething is the most normal one but any fever will give us serious pause. Last time she had pneumonia and was hospitalized, she was a happy normal baby all day long. Around 11:30 that night, she got fussy and wouldn’t go to bed or take milk. About 12:30am she felt warm and we took her temp and it was 99.8. At that time nothing to be alarmed over. 20 minutes later she had green stuff coming out of her nose and was moaning like she was in serious pain. She felt hotter and we took her temp again, it was 103.9!!!! We didn’t blink, it was to Kosairs immediately. When we walked in the ER, her pulse/oxygen machine alarm was going nuts, we were carrying her oxygen tank and she was moaning and coughing up nasty mucus all over my shirt. The lady at the desk took one look at us and motioned us to the nurse in triage within seconds. That nurse took less than 10 seconds to listen to her lungs and said “We’re going back, I’m guessing your part of Hearts and Hands?” That is the name for the special care group at the hospital that we’re part of that assist families of medically fragile children who visit often. When we walked to the back we had 2 nurses waiting for us and a doctor walked in right behind us. It was at that moment, I realized our journey as parents will never be the same, this is our life.

It’s so easy to worry about your first child, you worry about germs, you constantly call the pediatrician’s office, and your life revolves around your child’s day. This is normal for all first time parents. I feel like Elizabeth and I are on hyper worry when it comes to Reese’s care and at times we speak another language to each other. We discuss her heart rate, how many ounces, if she took this medicine, what her oxygen level is, what milestones she’s hit today, when her next appointment is, and if we can even take her outside. It wasn’t supposed to be like this. When my wife and I were born, we both walked by nine months! We were just sure when Reese was born she would follow in Mommy’s and Daddy’s footsteps, literally. Instead, we now get excited when her physical therapist tells us she sat up on her own longer than 2 minutes or our paediatrician tells us her lungs are clear and she gained weight this month. This is our life.

Our Story Part 3 – Present day

Now that I’ve caught us up, here is where we are as I write this today, July 2nd 2012. Reese has a big month this month, she turns one years old! She also will most likely have surgery on her heart sometime this month. She has an abnormally large hole in her heart and it is causing extra blood to be pumped into her lungs. Her lungs are stiff and she has trouble staying at a normal oxygen level. So we must keep her on oxygen most of the time and it of course limits what she and we can do.
So next Tuesday, July 10th, we take Reese to Kosair’s for a heart catheter procedure. They will look more closely at her heart and see how the blood is pumping through all of her chambers. Then we’ll sit down with the doctors and decide when she will have this surgery to close the hole and what her longterm prognoses for her heart and lungs will be. Reese is going to have a busy time at the hospital the next month.

A couple of weeks ago we visited her geneticist team. Honestly, they were of no help or comfort considering everything they told us we had already read. When they came into see her, they took her picture and asked if they could do a research paper on her. A parent dreams of their child succeeding in life and making the newspaper, winning an award, being successful in whatever they do. No parent should have to give permission for their child to be written about in a medical journal. When they asked us, Elizabeth and I just looked at each other. They left the room and we discussed it and decided that if helps another family who discovers this disorder, then it’s worth it.

Our geneticist told us that they won’t see us for another year. Once this heart situation is fixed, we’ll most likely get Reese a sleep study because most children with this syndrome have sleep apnea and need some type of help breathing at night. Once all of this is done, we just keep focusing on her development and watch her respiratory health. Pneumonia is the biggest worry for us this coming winter and we’ll have to keep a close eye on her vitals to avoid anymore visits to Kosair.

So that pretty much catches us up with our precious Reese McClain. With everything I’ve written these last few posts, I might not have painted the best picture of our situation. It’s not easy but I do want to make one thing clear. My wife and I are bible believing Christians and believe Reese is a gift from God. Everyone is made in God’s image and while we in our society don’t consider her normal, she is normal to God. He has a plan for all of us and his story is bigger than our own. Reese is part of that story and he has in trusted us with his daughter. It’s not easy to turn something like this over to God, especially for a control freak like me. Yet with each new setback, medicine, test, or worry, I pray to turn it all over to him because giving glory to him is all he wants.

Thank you for reading our story and we appreciate everyone’s kind thoughts and prayers. Keep an eye out in this blog as I post more updates, news, pictures, and maybe even some fun randomness. God Bless.

Our Story Part 2

It was a Friday evening around 6:30 and I’ll never forget the phone ringing and the look on my wife’s face when she answered it. It was our neurologist and he should not have been calling us for any reason. He had received her genetic tests and they turned up a serious abnormality. She has what is called XQ28 duplication syndrome. This is a rare genetic disorder for children and even more rare for girls. We’ve been told she’s 1 of around 15 known girls who have the disorder. It’s more common in boys and they have it very severe with 100% of them having mental and phyisical disorders. The known girls is a range of issues but all still have mental and physical problems. What everyone seems to experience is low muscle tone, respiratory problems, eating issues, and an overall developmental delay. All of these we have experienced in abundance and will continue too.

One of the genes that is active in XQ28 chromosome is the MECP2 gene. This is the more popular name to call her disorder. In fact, when you google MECP2 syndrome, you get all kinds of information and almost 99% of it is about boys because it’s so rare in girls. The list for boys is very disheartening but I’ll put it below.

Characteristics of MECP2 duplication in affected boys:

*Hypotonia (low muscle tone)

*As a result of hypotonia, motor development including sitting, crawling, and walking is severely delayed or impaired

*Mental retardation (in 100%)

*Recurrent respiratory infections (in 75%)

*Epilepsy (in 50%)

*Constipation and/or reflux

*Limited or absent speech

*Autistic behaviors

*Ataxia

*Progressive spasticity (usually noticed in the legs more than the arms)

*Stereotyped movements of hands
*Teeth grinding

*Developmental regression occurs in some boys

We read all of this the night of the phone call and both of us just broke down. Why God? Why? My wife ate nothing but healthy food during her pregnancy, she walked 3 to 4 miles almost everyday, and in fact, the night her labor started she had just walked 4 miles in 90 degree weather! The birth was easy, she barely needed an epidural and pushed 3 times and Reese was out. We had a miscarriage over a year earlier and had planned on waiting a while longer to try again. God had other plans but this was the big plan? He gives us the most precious gift of all that we prayed over so many times and it’s a child with this?

Mental retardation? Possible Epilepsy? Another article we read said only 50% of boys live past the age of 25! Another study of 4 girls that have it had one dying before the age of 3! This is our future? A child who will never drive a car, fall in love, go to college, and maybe never even run into our arms and tell us she loves us. For months leading up to her birth I joked about buying guns to keep boys away from her, now she’ll never have a man to love her as a wife? I will never walk her down the isle and give her away, I’ll never take her shopping for her college dorm or to buy a prom dress. At no point in my life did I ever consider this as a possibility for my child. This was other people’s problems and I always smiled and said a silent prayer when I saw children with these issues. Now these issues are our life. Where do we go from here?

Continue and read Part 3 here