Macy's Miracle Story: Part 5 Life Goes On

So I will not pretend that I handled seeing Macy with a trach in her neck very well.  I didn't handle it well at all.  As a matter of fact, the first day I went to go see her I just sat next to her crib and cried the entire time.  The nurses just left me alone with her.  We were told that we could not hold her for 5 days until her ENT could do her first trach change.  Macy did not have a vent, but she had a humidity machine with a mask over her trach, and had to continually be suctioned. 

One week after her trach surgery, they took her back in to repair her hernia.  She did great!  Jeremy and I kept pushing for Macy to go home.  They said there were a lot of things that needed to be accomplished before we could do that.  The two main things were that Jeremy and I had to receive training on her trach care, and we had to spend the night with her to prove that we could care for her.  So we once again pushed to have it all done within a weeks time.  The trach care training was completely overwhelming.  I left that day and didn't honestly know if I could handle it.  The NICU nurse was setting up plans for us to be home such as home trach equipment, appointments with our pediatrician, follow-ups with our Riley specialists, First Steps therapies, and nursing care.  Nursing care?  We don't need that, at least that is what Jeremy and I thought.  So, against their wishes, Jeremy and I refused nursing care.  We stayed the night, took care of Macy in shifts, and after 39 days in the NICU we walked out the doors with our baby girl! 

 

To this day I have no idea how we did it!  All I do know what that is was the hardest time of our lives.  Macy had to be suctioned very frequently, even through the night.  Her humidity machine didn't last all night, and had to be refilled halfway through the night.  She was hooked up to a machine to monitor her breathing rate and oxygen levels that we carried around with us like a purse.  On top of it, we were both working full-time from the time she was 5 months old and on.  We cleaned around the trach each morning and evening doing gauze changes, we cleaned out her suction machine daily, and we did a complete trach change every Sunday evening.  Her trach straps had to be changed out often because she often vomited on them, and they would become saturated. 

Her feedings were like little marathons for her little body, she was not growing much, and she coughed, gagged, and vomited often.  Poor sweet girl......my heart broke for her!

In the first 2 years of life Macy faced 15 surgeries.  She had many bronchoscopies, hearth caths, 2 heart surgeries, and a trachea repair.  She continued to amaze the doctors after each surgery.  She recovered quickly, and went home sooner than anticipated.  She continued to drink orally, despite having a trach.  Most trach patients end up with a G-tube. 

 

 

Even though she ate orally, she didn't eat well.  She had a very small appetite.  Along with a physical therapist, occupational therapist, and speech therapist from First Steps, Macy was also seeing a nutritionist.  The nutritionist had great ideas to help get Macy to eat, but she did not grow well.  At 1 year old, she weighed 11 pounds, at 2 years old she was only 17 pounds, and at 10 years old she is still only 44 pounds.  It's crazy to think about!

Despite all of these challenges, this little fighter met all of her milestones close to when she should've.  She was walking by 15 months.  She was only about 12 pounds, and walking all over the place.  She got her trachea repaired at 1 year, 3 months, and had the trach removed permanently at 18 months.  She started talking right away!  It was AMAZING to hear that scratchy little voice that we only dreamed of hearing! 

 

 

Over the years we have battled sicknesses, breathing issues, growth challenges, and many more.  To date, she has faced a total of 21 surgeries.  Next week we face numbers 22 and 23.  It never gets easier for any of us.  All I know is that she is amazing!  She is a true fighter unlike anyone I have ever known!  One thing we have all learned is to not sweat the small stuff.  You can't....there are so many big challenges in life to conquer!  We are very proud of our little miracle. 

 

 

"AND THOUGH SHE BE BUT LITTLE, SHE IS FIERCE!"