What Does Garret “Have”?
Short answer: Nobody really knows. There has been no test that has revealed one answer/syndrome/condition that explains Garrett’s unique collection of special needs.
He has a tracheostomy (artificial airway in his neck) that helps him breathe.
He has a gtube (hole that goes directly into his stomach) to help him eat.
He is severely developmentally delayed (at age 2.5 he acts more like a 3 month old)
He was born with a cleft lip and palate (they have both been repaired)
He has club feet
He has Cerebral Palsy (likely caused by the multiple strokes he suffered in the first few months of his life)
He has severe neuralgically induced “posturing” (arching and strange arm positioning)
He has the sweetest smile in the whole wide world
Long Answer
It was his 20 week ultrasound when Andrew and I were first made aware that our baby was going to have some problems. The ultrasound showed his cleft lip and palate, as well as his club feet. Any parent who has had abnormal ultrasound results is familiar the fear and sorrow and questions that overwhelm the first few days after the appointment. We were no different. It was explained to us that discovering simply one physical anomaly at a 20 week ultrasound was simply that. A sole physical anomaly that can be repaired after birth. The fact that our growing baby had 3 anomalies suggested a larger, over arching problem.
My blood was tested for an inappropriate number of chromosomes, which could reveal trisomy 13, trisomy 18, or Down Syndrome in our baby. I lived through ten million “what if” scenarios as I researched (aka googled)all three of the possible outcomes. This “research” was needlessly exhausting and terrifying. Staunchly pro-life, the results of this chromosome test would only inform what our life could look like- not provide any actionable results. And as tends to happen when gripped by fear, I imagined the most horrible scenarios for our baby and our family.
We learned that the chromosome numbers in my blood were normal. More invasive testing was offered, which we declined. Needlessly dangerous, as again, there would be no actionable results.
We had the rest of the pregnancy to prepare for a different type of life after our baby was born. And to familiarize ourselves with a much larger medical facility, since our local clinic thought it best to hand over care to the specialized maternal/fetal medicine doctors in the world famous clinic system just 45 minutes away. An eternal optimist and someone who is fairly obsessed with joy, it didn’t take me long to start looking for the good in our situation.
Andrew and I took advantage of the weekly (sometimes more) fetal monitoring appointments to sneak little lunch dates in the “big city”. More advanced ultrasounds meant clearer pictures of our sweet boy- we could even see a his little cleft lip. His little mouth became familiar to us. He was lovely. It took time and processing and prayer. But we believed we were ready for his birth in late July 2018.
How wrong we were.
Garrett was induced one week early, so that his birth would be in a controlled environment, with the NICU team standing by. Apparently cleft lip babes sometimes have difficulty breathing at birth, so they wanted the team ready in case that held true for Garrett. Thank God.
When tiny Garrett came out,(I say tiny, he was 6 lbs, but is amazing how tiny you look when you are purple and struggling so desperately, and so quietly for your life.) he barely made a noise. They lay him on my chest. I tried to feel happy. But he was so little. So purple. His face looked mangled. And I could barely hear the muffled tiny squeak we wanted to label a cry. He was quickly whisked away from me, and resuscitated in the corner of the room. He had been suffocating. They took him away to the emergency area of the birthing center.
As I am typing this, I realize I don’t want to relive the next few hours, or even the next few days after his birth. I will say that he was baptized the day he was born. In the NICU. It was a somber, beautiful baptism- in the tiny enclosed room that was reserved for the sickest babies in the NICU.
Garrett was very very sick. He was intubated on a very extreme intense ventilator. His struggles were way beyond a cleft issue, or club feat. We spent the first few weeks in the NICU simply praying that he would live.
His first surgery occurred when he was 13 days old. It was a bladder surgery (he had a hole in his bladder that was leaking urine into his stomach). The urologist repaired the hole, and also gave him a vesicostomy. His bladder was stitched to his stomach, and exposed on his exterior. This has since been reversed, and he has a big old scar on his lower abdomen, but for the first 11 months of life he urinated out of his tummy. Kind of bizarre.
The scary days in the NICU ended after about a month. We then entered the “grower/feeder” stage. The goal was to get Garrett to eat on his own, so we could take him home. He still required Oxygen, but was able to suffice on low amounts through nasal cannulas. He had graduated from the super intense scary ventilator to a less intense one (still intubated). From there he was extubated and used a cpap machine which covered his entire face (Andrew thought he looked like a TieFighter Pilot). From there, the nasal cannulas and the NICU nurses continued to titrate down his oxygen. Things were looking good.
However, he was still eating through an NG tube that went into his nose. (We were able to feed him breast milk through this tube). After several failed attempts to get Garrett to take a bottle (even with the crazy cleft lip adaptive bottles) we decided to give Garrett a G-tube so that he could come home with us. After nearly 2 months in the NICU we were more than ready. Surgery number 2 for our babe was scary, but successful. Garrett could now work on oral feeding at home. If only it was that simple.
A few more “going home” tests revealed that Garrett was still not breathing properly. The 02 we were giving him satisfied his inhale requirements. What wasn’t working properly was his exhale. The levels of carbon dioxide in his body were way too high. This is the first time the word “trach” was spoken. I had no idea what that was. We were very against it. We were terrified.
After another 30 days in the hospital, waiting to see if Garrett’s levels would stabilize on their own, we made the emotional decision to give him a tracheostomy. I remember saying to Andrew “Let’s stop making the trach the enemy. Let’s start thinking of it as the friend. Let’s get the trach now, so we can be one day closer to getting rid of it.”
Garrett’s trach surgery and his lip repair took place at the same time. It was a long day in the OR. When we met our 3 month old baby in the PICU, he looked entirely different. Honestly he looked foreign to me. He looked like a foreign robot. I had gotten so used to his sweet cleft lip- his new repaired face was alien to me. He was very swollen from all the fluids from the surgeries. And he had a massive cord coming out of his neck. This was enough in and of itself. But we were met in his room by a team of neurologists, who informed us that Garrett had recently suffered a stroke that caused irreparable brain damage. Talk about a rough day.
We now know that Garrett has unprecedented blood pressure drops when he is administered with a certain OR medication. Coupled with the fact that Garrett has record breaking tiny veins (getting an IV line is nearly impossible even for the best anesthesiologists in the world) makes keeping him safe in the OR a very difficult task. There are certain procedures to follow and medications to give that are completely unique to Garrett.We know that now. We didn’t know that then. So a significant part of Garrett’s brain is damaged.
Apparently though, if you are going to have a stroke, the time to have it is as a kid. The brain is amazing, and can rewire/reroute things like google maps on steroids. We are so full of hope that Garrett’s brain will continue to progress, albeit significantly slower than others. I did say continue- subsequent MRIs have indeed shown growth. Praise be to God.
Perhaps a result of the stroke, perhaps not, Garrett has very strange physical reactions to emotion. If he is mad, startled, happy… basically anything except calm, he will arch with all of the strength in his little body. This is a strength that is growing with him. His arching muscles are insane. He could be in the arching olympics. He takes some “brain medication” to help with this, but it doesn’t feel like it helps at all.
So, at 5 months old we took Garrett home from the hospital with everything listed in the first portion of the blog. (trach, gtube, club feet, CP, brain damage - oh! but not the smile! that was not something we were gifted with yet.) We certainly had more questions than answers.
There was a small beacon of light in the distance in the shape of a full exome sequencing. Small, because even if the lengthy test (it took months and months to get results) did shed some light on a genetic condition, it was likely very rare so not much documented information.
Well, there was no need to fret about how much or little would be revealed about his potential rare genetic condition- because as far as the testing is concerned he has none.
So. There you have it! Garrett is a little mystery man. He is tough. He is brave. He is so very very sweet. His brain is growing, his lungs are progressing. He can smile and laugh and interact. (his laughter is still silent- well sometimes we are blessed with a squeak). There is a strong hope he won’t need the ventilator forever. Maybe not even the trach. We have made zero progress on feeding him orally, but the kid is not even 3! With all he’s been through, I am so happy to give him time. If he takes his first bite at age 15 I will be the proudest Momma that ever was.
We don’t know if he will ever have his club feet corrected. We don’t know if he will ever stand- heck we don’t even know if he will ever sit unassisted. But I have hope. I think he will. And if not, I will carry him until I am so old and fragile it is impossible.
We love him beyond belief, all of us. We are often surprised and impressed by the strange combination of grace and hardship he has brought our life. He makes us better human beings. His life has changed so many other’s for the better.
All of this is true. But oh boy, would Andrew and I love a vacation. Anyone wanna babysit for a couple of weeks?
One month before Garrett’s birth.
traveling to the real NICU once he was stabilized in the Emergency room in the delivery ward
Look at how far this little medical mystery has come!
(and see what I mean about his smile!)
