Miracle in the Making...

I am definitely a little behind on updating our family blog; however, I feel pretty confident I can explain and justify my "slacking" off a tad these past couple of weeks.

Firstly, can I say one thing?

In the past 3 weeks, my family and friends have witnessed not one...not two...but THREE miracles through my child.

This is my reason for writing this post. This is my reason for sharing our son's journey on facebook, through a blog, and openly in conversation with so many. It is truly incredible, just amazing that God chose our family to show his love, strength, power, and perfection through such a tiny being.

I even contemplated leaving this post out being that the 2nd month of my child's life has been so emotionally exhausting, so challenging, and difficult...yet I can still manage to say it has been so wonderful all at the same time.

Gunnar has been having breathing trouble since close to birth. It is worse while he is taking a bottle, but he makes the sounds randomly throughout the day, each day. A lot of the time we blamed it on Cystic Fibrosis. The rest of the time I spent my time in prayer and calling doctors and nurses at the CF clinic at LeBonheur to get their opinions as to what I should do to help get him well. Little did we know at the time that these sounds were just apart of what makes Gunnar unique...at least for now. I'll explain more about that later.

One morning I woke up and couldn't bare the thought of hearing my little man struggle to get air any longer. I had given him a bottle, and it seemed as though the sound had intensified. He even was drooling bubbles of saliva. Nope, no more could I watch this happen without consulting a doctor and getting some type of answer. I picked up the phone and called the head nurse at the clinic at LeBonheur. After seeing no change since adding in extra CPT (chest physical therapy) and changing Gunnar's enzyme dosage several times, I knew then I had no other choice. I guess you can say I jumped right into "Mommy Mode" and followed my gut instincts. The nurse agreed I should take Gunnar to our local pediatrician, Dr. Robertson, and have him check his vitals. Dr. R checked Gunnar from head-to-toe and listened to him both with and without a bottle. He even monitored his oxygen while doing so. He agreed there was definitely something going on as his oxygen was dipping while I fed him and phoned LeBonheur to discuss with the pulmonology team there. We were instructed to go home, pack our bags, and head to Memphis for testing. We just didn't know then that what we thought could be an overnight stay turned into a 2-week stay. The longest 2 weeks of our lives.

Within those 2 weeks, Gunnar endured the following tests/procedures/treatments:

• 2 swallow studies (without feeds for hours at a time for testing)
• bronchoscopy (put to sleep)
• rigid bronchoscopy (put to sleep)
• esophagram (without feeds for hours a time for testing)
• ventilator for over 48 hours
• NG-tube through his nose for feeding (almost the entire stay)
• deep suctioning down the nose/throat through a tube
• numerous IV's (both hands, upper arms, both feet all at different times)
• numerous antibiotics with many side effects
• MRI
• CAT Scan (both w/ and w/o contrast)
• increased CPT
• pulmozyme breathing treatments
• albuterol breathing treatments

...and the list goes on.

Needless to say, Gunnar kept fighting until we finally received the answers to what was going on in our tiny baby's body since birth. Some things which had absolutely no relation or connection to CF. Things we wouldn't have known were going on had we not had CF and been as alarmed from the get-go.

What were we told?

• He would be 100% having a tracheostomy, and he would have to have the trach up to 2 years of his life.
• He had a subglottic cyst...possibly even a tumor in his windpipe blocking over 50% of his airway. It would have to be removed and if ruptured, it could close off his airway (why trach was a must).
• The cyst would most likely grow back.
• His left main bronchial stems was abnormally small.
• His lungs were filled with more mucous/secretions than most CF babies at his age.
• Both of his lungs were extremely swollen and irritated.
• His left lung was 80-90% compressed by something pulsating against it which could be his heart, a vessel, or even a mass of some sort.
• He had severe lung disease based on the sound he was making.
• He had both staph and strep show up in his lung cultures taken from the bronch.
• He had a hole in his heart.
• He could possibly have heart surgery which would include breaking open his sternum, threading his heart, and pulling it off his lung.
• "Your son is being extubated off the ventilator now." (Moments later after Gunnar started to wake, the doctors came in to inform us he will have to be intubated and sedated again because the scans were not done right the first time.)
• He was aspirating his feeds and would probably have to have a G-Tube inserted in his tummy to be fed so that it did not seep into his lungs, build infection, or cause any further complications.

...and so much more.

What did we do?

We prayed.
The world prayed.
The doctors prayed.
The nurses prayed.
Nonbelievers prayed.
Believers prayed.

We all prayed to God, our Father crying out for healing for my precious infant.

What happened?

• He floored the doctors.
• He floored the nurses.
• He floored his family.
• He floored his friends.
• He floored nonbelievers.
• He floored believers.

He brought us to our knees, and we shouted praises up to God for answering our prayers.

Because...

• He did not need a trach.
• He did not have a tumor.
• He did not have a subgottic cyst.
• The hole is his heart was small enough not to need surgery.
• His left lung was more like 50-60% compressed rather than 80-90% as they originally thought.
• He has a low-lying aorta pressing on his left lung, but we were told surgery was not needed at this time and that it will just be monitored as he grows.
• Both of his lungs were extremely swollen and irritated because he had staph and strep which have been treated with strong antibiotics.
• The second and final culture showed the antibiotics did the trick.
• The sound he makes...a tracheal cleft which is an extremely rare birth defect that at this time does not need surgery. The doctors will monitor it as he grows just as with his heart.
• Tracheal Cleft - only the 2nd case in 40 years...the doctors were speechless.
• He is off the ventilator and is breathing 100% room air all on his own.
• He is not aspirating his feeds, and we can go back to bottle feeding.

Can you believe HE chose OUR child to show His MIGHTY WORK.

Thank you, Dear Lord...thank you.

We are now back home, in our own beds, and continuing to watch God work in our son's life...all of our lives. Gunnar is such a fighter, such a warrior.......such a WITNESS of strength, power, and love. What a testimony he has to share with the rest of the world.

See, little man, you are already are making your mark in this world. If you only knew the prayer warriors that have accumulated over these past couple of weeks. You are so loved! ...and we, my dear son, are so blessed.

Just Breathe.