Progress!

I’ve been struggling since we returned to Cincinnati on how and what to write about our trip.  I write when I feel led to write and I’ve been trying to figure out what God wants me to say this time around.  He continues to teach me so much about my faith, my children, my marriage…my life…through this.  As difficult as this process is to go through and watch Hayden go through, I am amazed and forever grateful for the lessons that He is teaching me. 

Hayden will be having Airway Reconstruction surgery this summer.  After almost two years of illnesses, medications, and hospitalizations, it looks like our little guy will be getting some relief!  I am so excited to know that he will be healed soon yet very scared too.  Hayden and I began our adventure last Wednesday evening and arrived in Ohio about 1:15 am.  I didn’t realize that we would be crossing into the Eastern Time Zone until last week, so our 6 hour trip took 7 hours according to the clock.  I definitely felt the loss of time when the alarm rang for our 8:45 am appointment Thursday morning!

My first impressions of Cincinnati Children’s during our phone calls over the past few months were quickly replaced when we got to the hospital Thursday morning.  Everyone, and I do mean EVERYONE, was incredibly helpful, thoughtful, and encouraging. ..all the things that I needed on this trip. 

Hayden’s physical with the Gastrointerologist went well.  He did suggest that we contact a speech therapist to help with some eating issues that he’s having.  One more doctor to add to my list.  J  I am very thankful that God gave me two healthy kiddos in Richard and Emma….coordinating appointments and taking care of Hayden is a full time job in itself. 

After Hayden’s appointment, we had an entire day to enjoy so we went to the Cincinnati Zoo and Botanical Garden for a few hours.  Hayden loved the animals, especially the turkey in the Children’s Zoo.    

Friday was the big day.  We arrived at the hospital, got all checked in and met Dr. Cotton for the first time.  Hayden was still in a great mood (I think he liked having me all to himself!) and he wouldn’t stop charming the nurses.  The nurses were amazing and kept him entertained with bubbles and toys while the anesthesiologist talked to me about his procedures.  We took him back to the operating room just before 9.  I say “we” because I was able to go with him and helped give him his anesthesia as well.  That was a first but it helped Hayden feel more comfortable with the situation.  He quickly fell asleep in my arms and they wheeled him into the operating room. 

The procedures took about 20 minutes!  I was shocked to hear my name called so quickly.  I was able to talk to Dr. Cotton first, while the Gastrointerologist finished placing the impedence probe. 

Hayden’s little airway is smaller than a newborn’s!  Now that we know what we’re up against, we know what we need to do to get him better.  We’ll be going back to Cincinnati Children’s this summer (hopefully August) for about a 3 week stay.  Dr. Cotton will graft cartilage from Hayden’s rib and use it to widen his airway.  He will place a graft in the front and rear of his airway to widen it.  After surgery, we expect him to be intubated (sleeping with breathing assistance) for 3-4 days.  The remaining time in the hospital will be spent in the Airway Unit where he will stay until Dr. Cotton’s final scope a couple of weeks later to check on his progress.  If Hayden gets a good report at that time, we will be discharged and head back to Alabama. 

We can’t wait to get our little guy better!  He’s been illness free since about January with the exception of a few coughs here and there.  Three more months and we pray that we get him fixed for good! 

Praising God!

I took this picture at the airport yesterday.  Hayden loves airplanes so he was all smiles watching Daddy, Richard, and Emma take off.   

One of the toughest decisions we had to make this winter was not to take Hayden to church and expose him to the winter sicknesses that seemed to be at every corner.  Rich and I decided to take turns each Sunday taking Richard and Emma to services at The Brook.  While it’s been hard on us not going to church together, we’ve kept Hayden well most of the time. 

We decided last weekend to try to go as a family again for the first time in months, hoping that most of the illnesses had disappeared from the Toddler Room at church.  By Tuesday though, Hayden started to cough and Rich and I were heartbroken.  NOT AGAIN!!!!  So, we pulled out the humidifier and started giving him Singulair again praying that he wouldn’t need to go to the hospital for treatments.  We've tried Pulmocort, Xoponex, and Albuterol breathing treatments but nothing provides any type of relief for him.  The only thing that works is Restimic.  (I’m sure I’ve totally butchered the spelling of the medication.)  This medication can only be given in the hospital hence the need for our frequent ER trips and hospital stays, up to this point. 

Well, the Singulair and humidifier seem to be working!  Since the cancellation of Hayden’s surgery on February 21 in Huntsville, I have been praying that God has been using this time to heal Hayden’s airway so that he won’t need surgery during the summer.  Hayden’s ability to overcome this episode has me hopeful beyond belief that our prayers are being answered!  Any other time he's caught a cold or anything that causes throat irritation, he’s ended up in the ER at a minimum.  I am cautious but optimistic this time around.  Our doctor has told us that his throat would most likely mature anywhere between 18 months and 4 years of age depending on the severity of the scaring. 

We’re still planning our trip to Cincinnati on April 21 but I’m praying that we’ll get a great report from the ENT at that time. 

Hope everyone has a blessed week! 

The Lessons We Teach

*This is something that's hit me hard this week.  It's not about Hayden's illness specifically but it is about being a parent and teacher to those we love.  Enjoy!

When I was growing up, people often told me “You’re going to be a teacher someday.”  I’m not sure if it was because I made my 4 year old brother learn everything I did when I went to kindergarten or that I wanted to write on my chalkboard all the time.  Or maybe it was because I was always pegged teacher’s helper in class.  Who knows…it was probably all the above and I’m sure those that are reading this whom I grew up with remember it all well!

I’ve always struggled with this.  Should I have been a teacher?  Did I miss God’s calling on my life?  Should I go back to school? (AGAIN!)  In my relatively short time as a daughter of Christ, I’ve learned many things.  One of which is that we are all teachers.  Our classroom may not be traditional, but I can assure you that Christ’s wasn’t either. 

Every time I hug my children, I teach them about Love.  Every time I do what I said I was going to do, I teach them Accountability.  Every time I forgive someone who has hurt me, I teach them Grace.  Every time I don’t pick up after myself, I teach them how to be Careless with what they’ve been given.  Every time I raise my voice over something petty, I teach them that it’s ok to let “The Stuff” get the best of me. 

Wherever we go, whatever we do, we set an example for others whether we want to or not…we teach them.  Over the past few weeks, this has hit me like a ton of bricks.  I AM living out one of God’s callings on my life..to be a teacher.  Now, whether I’m being successful with it is debatable but I feel like He’s pushing me right now to teach and He’s changed my definition of a teacher.  Unless we’re living all alone in the middle of a forest or on an island, we’re a teacher.   How do I know this?  I see my kids mimic everything I do and say.  I have taught them to say the things I say and do the things I do…not because they sat through Mommy 101 each day but simply because they watched me on good days and bad days.  There are many things in life that make my heart happy and the list includes:

·         Picking Hayden up and receiving the biggest hug a 20 month old can give.

·         Hearing Richard and Emma pray The Lord’s Prayer every night.

·         Watching Emma take a cookie for her and one to give to her older brother that she adores.

·         Being given a flower that Emma has thoughtfully chosen.

·         Having Richard ask me to put an extra snack in his backpack in the morning in case one of his classmates doesn’t have one.

Seeing my children reciprocate the love that they’re given is the single greatest moment for me as a mom..a teacher.  I praise God for using me this way and showing me what His definition of a teacher is.  I only hope my good lessons far outweigh the bad ones! 

Preparation for Surgery

After weeks, 5 to be exact, of working with the hospital, we finally have a tentative date for Hayden's first procedure.  I use the term "working" very loosely because it's mostly been phone tag and countless transfers.  One very frustrating thing about working with a hospital this big is that every person has virtually one job and if you don't happen to get that person, you WILL get transferred.  I've found myself tearing up a couple of times purely out of frustration.  Alone, I don't have time for this but God gives me strength to make "just one more phone call".  Last week, I finally got to the right person, who ironically was the first person I talked to in February!

Hayden has a history of acid reflux and as a precaution, he needs to be seen by a Pediatric Gastrointerologist prior to the reconstruction to check the status of the reflux.  They will check the reflux by using an Impedence Probe which is inserted through his nose into his throat (sounds terribly uncomfortable to me).  It will stay in overnight and then be removed.  During the procedure, his ENT will take a look into this airway to determine our course of treatment for the reconstruction.  There are two types of reconstruction, single stage and dual stage.  Both have their positives, negatives, and risks.  We are opting for the single stage because it doesn't involve a temporary tracheostomy tube. 

The scary part (and probably the scariest part of this entire procedure for me) is that Hayden will be in a medically induced coma for about a week to allow his throat to begin the healing process.  He was sedated like this in the NICU when he was born and I am not looking forward to going through it again.  The length of sedation will depend upon how quickly his airway begins to heal.  Following the coma, he'll have another 2-3 scopes to check on his healing progress.  We're looking at a stay of 3-4 weeks in the hospital in Cincinnati after all is said and done. 

At this point, we don't have a full picture of what his treatment plan will look like.  Everything is dependent upon what Dr. Cotton finds next month.  His procedure is tentatively scheduled for April 22 with an overnight stay in the hospital.  If all goes as planned, he will be released on Saturday the 23rd and we'll be home in time to celebrate Easter on Sunday. 

As I go through each day, I am encouraged and amazed by all God provides and I know that He will continue to provide and take care of us as we go through this. 

I've often heard it said that "God won't give you anything you can't handle".  I don't believe that's entirely true.  I believe that "God won't give me anything I can't handle WITHOUT HIM".  I know that there's no way I could do this without Him and He deserves all the glory for getting us to this place. 

"For my yoke is easy and my burden is light."  Matthew 11:30

Help Arrives in the Form of Laryngotracheal Reconstruction????

Laryngotracheal Reconstruction...it's hard for me to pronouce or spell much less think about my precious Hayden going through the procedure.  We first began to consider the surgery in December following Hayden's eighth or ninth hospitalization in less than a year.  After countless breathing treatments, steroids, and surgeries, his ENT started to prepare us for the possibility of something more serious.  Eager to get my hands on all the information that I could, I began searching for anything that I could find.  Unfortunately, I wasn't finding much in the form of "mom talk".  I found multiple medical papers, studies, even dr. bios on physicians that had performed the procedure but nothing that told me what to expect as a mom...in terms that I could understand.  So, I'm learning this as I go.  Many things about this scare me to death but I'm getting more comfortable with it each day. 

My goal with this blog is to give other moms out there something to help curb the anxiety that I had every time I thought about his procedure.  I just wanted information and I couldn't get enough of it quickly enough.  I hope it helps someone as they prepare for the same healing that we are praying for with Hayden. 

Hayden was born at 37 weeks and a healthy 7 pounds.  Moments after birth, however, his lungs and heart didn't begin functioning as they should (a condition called PPHN).  He was rushed to the NICU where they discovered that his lungs were underdeveloped in addition to the PPHN.  After a two day roller coaster ride, he was transported by helicopter to Scott & White Hospital in Temple, TX where he would spend the first two weeks of his life. 

Being on a ventilator for any length of time notoriously causes scar tissue to develop in the throat.  Hayden was on a vent for about a week.  When scar tissue develops in a newborn's throat, it causes an already small airway to be even smaller.  Multiple surgeries to remove scar tissue and remove his adenoids have not given the relief that we'd hoped for so we are left with two options...Tracheostomy or Laryngotracheal Reconstruction.  Laryngotracheal Reconstruction involves grafting a piece of Hayden's rib and forming it to fit into his airway.  The graft would then be attached to the base of his airway to widen it and allow him to breathe normally. 

We've chosen reconstruction and have been referred to Cincinnati Children's Hospital for surgery in the next couple of months.  Cincinnati is one of the premier hospitals in the world for this type of procedure.  God has blessed us immensely by providing this option for Hayden and giving us one of the best doctors in the world to care for him. 

Coordinating a procedure like this (from 6 hours away) with a research hospital is nothing short of a frustrating and stressful event but I am doing the best I can to get him there.  I truly feel like a number and completely lost in a crowd.  I know that all will be fine in the end but as you all know it's not easy juggling children, work, and other obligations.  Add that to an incredibly frustrating scheduling process with a facility 300 miles away and I'm sure to break down at some point. 

I can't wait to get through this in a few months and have an even happier (if that's possible!) and healthier baby boy.  He truly is our miracle baby and we are so blessed to have this gift from God.