Most of us have some sort of idea of what our pregnancy will be like. The doctor’s appointments, the hi-tech 4D ultrasounds, the heartbeat…all of these things help your excitement grow as you near the end result, a perfectly healthy baby!

Things seemed normal until about 28 weeks.  Fluid began accumulating around Aidan’s lungs, terms medically referred to as chylothorax and pleural effusions.  At 32 weeks, I began active labor.  Upon admission into the hospital, it was determined that Aidan gained more than 3 POUNDS of fluid, a condition known as “Hydrops.”  [In the few weeks before I delivered, I researched Aidan’s conditions-chylothorax and pleural effusions- and often came across this term “hydrops fetalis” so I knew immediately that he was in danger.] I arrived at the hospital at 10 p.m. on Saturday, August 23.  We nervously tried to contact our families but the hospital had terrible cell service and no long distance service. Fortunately, I was able to get in touch with an aunt that lives in Houston and she relayed the message to our families.

As I was wheeled into surgery, my doctor said in very plain terms, “there is no guarantee he is going to make it.”  Aidan was delivered one hour and thirty-four minutes later by emergency C-Section.  I never got to see him as he was taken by the nurses to start life saving procedures.  My husband and best friend, Scott, said Aidan was ok even though, truthfully, he was unsure.  Scott did his best not to worry me even though he was terrified.

I learned later than Aidan’s color was dark blue, he was very swollen and unable to breathe on his own.  I was taken to recovery and an hour later, they brought Aidan by so I could see him before taken to the NICU. He was in an incubator with countless wires and monitors.  I got to feel his little hand and then he was gone.  I wouldn’t get to see him until the next day.

Precious little fighter on the 2nd Day of his Life

The following day, my doctor said I could expect Aidan to be in the NICU for at least one month.  I couldn’t believe his words; one month! Unbelievable!  It doesn’t matter how much research you do, nothing can prepare you for news like this.  I saw Aidan the next day; he was very sick.  We couldn’t hold him due to the respirator and the tubes that were inserted into his chest draining the fluid that had built up and was continuing to be produced.  It would be eleven days before we were able to hold him for the first time and nearly two months before we heard him cry the first time due to the ventilator.  The amount of information we were given in those first few weeks was overwhelming.  They ran a number of tests to try to determine what was causing his body to produce the fluid.  We were told they may never determine the cause.

The staff at Texas Children’s Hospital is AMAZING!  They were very informative and also incredibly supportive.   Most parents who have been through the NICU know that it is a rollercoaster ride.  Aidan would make progress in one way and then take a step back in another.  Aidan battled hydrops, chronic lung disease, a staph infection, a yeast infection near his heart, and multiple other issues that arose.  He would spend nearly four months in the NICU.

To add to the drama, on the day he was discharged, he was diagnosed with a rare form of cancer called Juvenile Myelomonocytic Leukemia (JMML). This was difficult.  We were so overjoyed to take our little warrior home, only to find out he would need a bone marrow transplant along with chemotherapy and radiation.  He came home on several medications, as well as Oxygen support, an NG tube for feeding, and a pulse/oxygen monitor.  You can never understand the joy of having a “cordless” baby until you have had to deal with all those wires! Everyday, Aidan took a step in the right direction.  After one month at home, we got rid of the NG tube.  After two months, he didn’t need oxygen or the monitor anymore.  Finally, a cordless baby!

In January, Aidan’s cancer specialist, informed us Aidan had been diagnosed with Noonan’s syndrome.  FINALLY…a diagnosis that explained all of Aidan’s medical issues.  We saw the cancer specialist once a month and were moving toward a bone marrow transplant. The transplant specialist thought it would be best to wait a while [for the transplant] due to Aidan’s size (a blessing in disguise).  Every month, Aidan’s blood counts improved until one day in May, they were normal!  He wouldn’t need a bone marrow transplant and he was CANCER FREE!  Could we get any luckier?

Since then, Aidan has continually improved.  He has and continues to receive speech and physical therapy.  He sees a genetic doctor, a cardiologist, a cancer doctor, a pulmonary specialist, an endocrinologist, and an ENT.  Due to Noonan’s syndrome, he
will probably always be smaller than the bunch ranking in the 6^th percentile.  He has a higher probability of developing heart issues but for now, Aidan is great!

I wish I could offer some sort of wisdom out there to parents going through something similar.  Here’s what worked for us:

1.) Having our family’s support.                                                                                        2.) We tried not to plague ourselves with “why” because there usually isn’t an answer.  3.) We tried to live only in that moment and not think about the “what if’s.”

Be your baby’s advocate…no one knows your baby the way you do; mother’s intuition goes a long way!  We don’t know what the future will hold for our family and for Aidan but if I’ve learned anything, it’s to enjoy and celebrate the little things.

Each and every day is a miracle in some way or another.