As you may remember I posted earlier that Greyson was going to be November's VIP (Very Important Preemie) for Northside Hospital's Parents Partnered for Preemies group. Since the vast majority of you aren't affiliated with the group I thought I would share the story and pictures of Greyson here that will be featured this month.... After a year and a half of trying to have a baby, we thought the pregnancy would be the easy part. Then we learned we were having twins, and normal pregnancy simply wasn’t meant to be. At 18 weeks, one of the amniotic sacs ruptured and a week later our first son was stillborn. Doctors told us it was virtually impossible to deliver only one child, they gave us a 1 in 1,000 chance, but Greyson was stubborn. He hung in another 6 weeks before he decided he simply couldn’t wait any longer. Our beautiful boy was born on July 25th at 26 weeks, 5 days with a fighting weight of 2 pounds, 4 ounces.
His first month of life went spectacularly well and relatively uneventfully. He was never on a ventilator, barely spent two weeks on a CPAP machine and was then placed on nasal canulas. He was even moved out of the NICU and into the “feed and grow” section of the Special Care Nursery. He was doing great on feeds and marching full force ahead as only a real fighter could.
But as everyone who has ever had a child in the NICU can tell you, things can change in a heartbeat. On August 25th, when he was exactly one month old, our phone rang at about 2:00 in the morning, with news that no NICU parent ever wants to hear – something was wrong, and they were running some tests. They’d call us back. A painfully long hour later, we received a second call: Greyson has NEC, they told us. We don’t think he will make it. You need to come in and say goodbye.
Some moments of that night are crystal clear to me – speeding down I-285 at 95 mph, holding my husband’s hand, riding up the elevator with the Scottish Rite transport team, seeing a ghostly white Greyson for the first time with what seemed like 100 nurses and doctors surrounding him with a swollen, bloated belly, the sound of the sirens on the ambulance ride over to Scottish Rite. Other moments, like our talk with the surgeon, I know happened, but I couldn’t tell you a single word that was exchanged.
Finally as the sun was coming up, we finally got good news. The NEC wasn’t as bad as they initially thought. They had to remove only a small portion of his intestines and at that point he was stable. They had performed an ileostomy and only time would tell how he responded.
The weeks after that were difficult and tenuous. When someone outside the NICU world tells you that they’ve been on an emotional roller coaster, you can rest assured, they have no idea what that really means. Greyson was intubated after surgery; when they took him off the ventilator, the pressures caused his lung to collapse and he spent several minutes without oxygen as they tried to repair the damage: surgery #2 – put a chest tube in. He battled more cases of pneumonia then I care to remember and a blood clot formed at the entry point of one of his PICC lines and ended up breaking off and strangling one of his kidneys, rendering it useless. Very slowly, however, the good days began to outnumber the bad and finally after 4 surgeries and 4 months he came home on December 1st.
Life at home with a preemie presents its own challenges. Greyson came home with a PEG tube for feeding, an apnea monitor that makes the most ear piercing sound you’ve ever heard in your life, 4 different medications including shots that had to be administered (taken of course at different times of day so we had to have a chart on the fridge to keep track) and 6 different specialists/therapists to visit.
He got his feeding tube out that next February and very slowly, as the months and years went by, we starting crossing off specialists and therapists one at a time. Today he is a vibrant, energetic, playful and often times stubborn 5 year old boy who loves to build LEGOS, draw, color, and play hockey at any opportunity. Other than the scar across his belly you would never know that the beginning of his life was anything but ordinary. He only sees one of his specialists, his nephrologist, who monitors his remaining kidney and will do so probably the rest of his life. He is in the 50th percentile in weight and height, something I didn’t even dream about 3 years ago (who knew average could be so spectacular). He started kindergarten this fall and is doing extremely well in reading and math. He is, in fact extraordinary in every way.
We couldn’t be prouder of all the things he has overcome and persevered through in his short life. We also wouldn’t have survived our time in the NICU if it wasn’t for the support we got from PPP. Our Thursday meetings were what got us through each week. Being able to sit down each week and talk with other parents who understood terms like CPAP, NEC, and BPD was a life saver. The support we received, and the lifelong friends we have met is invaluable to our family. Thanks to everyone at PPP for all you do!!
The big sport of the day was jumping from one hay bale to the other. Unfortunately the hay bales were a shade too far apart for most of the kids so their jumps usually ended with a splat on the side of the hay bale and a fall to the ground (a la Wipeout). For those lucky enough to not fall down and hold on to the hay bale the rest of the class pushed from behind to get them on top. A great lesson in team work.
