My season of childbearing began just like any other woman’s, except that somewhere along the way, we decided to embrace as many babies as we were blessed with, and baby number 13 was proving himself to be special in so many ways. First of all, Benjamin was our 13th child and he was being welcomed into this world by 12 adoring siblings, and one smitten sister-in-law, who recently revealed that she, herself, was expecting, which made Benjamin an uncle when he was born. How’s that for a birthday gift for him!
Here is Benjamin after having received a significant amount of fluids along with various vaesodilators to decrease his pulmonary hypertension. Ultimately, they were unsuccessful and we were left with ECMO as his only option.
Secondly, Benjamin’s labor was like no other that I had ever had! My typical labor, starting with baby # 1, would begin with piddly, erratic, annoying contractions that kept me up all night and then fizzled out by morning. This would go on for 3-4 nights till my body finally decided to get down to business, except business wasn’t business as usual. Business to my body meant laboring that final night into the early morning, all through the following day, and, finally, delivery late the next night. EXHAUSTION was my state of mind, not to mention my body. This was how all 12 of my babies had been delivered. However, Benjamin’s labor and delivery was turbo charged from start to finish, to say the least. My water broke a few minutes after 3 in the morning and he was born at 4:06 AM. My husband had to firmly demand that I get out of bed and get dressed so we could head to the hospital, because, after encouraging me to get moving, I procrastinated and lounged in bed for another 20 minutes after my membranes ruptured. He knew that once my water broke the baby would usually come soon thereafter. OK, so I finally decide to dress and I could barely make any progress because I was in transition and things were already hot and heavy. So, after dressing, I grabbed my jacket (a maroon fuzzy one, which we’ll discuss in greater detail later), headed to the car, stopping every minute to work through my contractions. I get to the car and am about to step in and realize I’m ready to push. My husband grabs the towel I have between my legs to catch the amniotic fluid, since he sure doesn’t want that stuff on his BMW’s white leather seats, and throws it on the ground and spreads it out with his feet. He stands behind me while I push and out comes Benjamin in a couple of pushes. How’s that for a precipitous labor?
This is Benjamin on day 4 in St. Mary’s NICU. He was transferred here from St. Francis to receive the medication nitric oxide to treat his severe pulmonary hypertension. His stay at St. Mary’s was only 4 days as they were unable to successfully manage his worsening conditioning. From there he was med-flighted to UVA.
We decide to continue on to the hospital and, of course we had to get gas, which was my only pet peeve of the night, but we make the one hour trek to show the midwives our newest blessing. On the way in I start rubbing Benjamin off with the only item of clothing available, my jacket. Not only is it somewhat scratchy but it has the feel of wool. not the fluffy, downy soft, flannel you envision greeting a newborn with. But, hey, it’ll have to do, right? So a little while later, with the help of Denny’s obnoxious flash glaring repeatedly as he snaps pics of his comatose wife holding their newborn, I realize Benjamin’s skin looks weird. Upon closer inspection I begin rubbing stuff off his face and body that looks like burgundy hair. Yep, the jacket is shedding and it’s clinging to his entire body thanks to the fluid, vernix, and blood. The hospital folks (midwife and her entourage of nurses) met us at the parking lot, which, by the way, is where I delivered the placenta, and came well prepared for greeting a new baby. They had towels, sheets, blankets, baby hat, scissors, cord clamp, bulb syringe, wheelchair, and anything you could ever possibly need in that type of situation, even a basin for the placenta. Not only were they well prepared for us but one of the nurses even cleaned up the mess I left in the passenger seat. How’s that for service?
The third reason Benjamin was so very special was that, after getting to our room and settling us in for Benjamin’s newborn exam, one of the nurses told us it appeared Benjamin had some of the markers of having Down Syndrome. They never officially tell you “your child has Down Syndrome,” since they must wait for the genetic testing result before making if official, but they prepare you with the “marker” buzzword. Anyway, after getting over that bit of news they tell us they think he has a problem with his heart, which is typical for DS babies. So we snuggle him for a bit and off he goes to the NICU. He is put in an isolette and hooked up to oxygen with a nasal canula. We meet the pediatric cardiologist, who was wonderful and is still Benjamin’s doctor, and he tells us Benjamin has two holes in his heart which is causing him to have pulmonary hypertension. He was given multiple meds to dilate his blood vessels, but after a few days, it becomes obvious Benjamin needs more than they can give him there so he is transported to a different hospital. There he is hooked up to multiple meds, at least seven from what I can tell, and he is sedated to keep his heart rate normal. After four days there, he is, again, transported by helicopter to the University of Virginia Hospital, which they tell us has the last possible thing that can help Benjamin… the ECMO machine, which is a type of heart and lung bypass machine. There they tell us that, if the ECMO machine doesn’t give Benjamin’s heart and lungs a chance to relax and slow down, there is nothing else they can do for him. They prepare us for the worst and we begin to prepare ourselves for the devastating possibility of losing our little man.
Here is a photo of the heart and lung bypass machine Benjamin was attached to on day 6. Basically, this was the last effort the NICU team of docs was able to offer us in their attempts to save his life. He was on the machine for 3 days during which he made remarkable improvement that even surprised his docs.
This whole time we were somewhat in a daze. For me it was not necessarily due to the Down Syndrome diagnosis, although, in a small part, that was a bit of a shocker, but, primarily, because of the medical crisis our little man was in the midst of. He was so little and hooked up to so many wires and tubes and meds and machines, and he was so swollen from being given so much fluid to try to dilate his blood vessels, and his little chest was bouncing up and down so fast and hard from the oscillating ventilator he was attached to, that you just ached with pain for him. Seeing your child not being able to breathe and struggling to cling to life was SO VERY HARD. He was suffering so much and yet there was nothing in our power we could do for him.
Benjamin was born with two holes in his heart (ASD/VSD) that could not be repaired till the age of 4-6 months. Once his life threatening medical crisis was resolved and he put on some weight we were able to plan for his cardiac repair surgery. The medical team at UVA was fabulous…they were beyond amazing from start to finish.
Well, with all thanks to our Heavenly Father, Benjamin pulled through after just three days on ECMO, to the delight of his docs, and of course, his family. The docs said that it was unusual for a baby to improve and get off of ECMO so quickly. We had soooo many folks around the world lifting him in prayer. It was an amazing time. After his stint on ECMO, it was discovered that Benjamin had an intestinal obstruction that would need to be surgically repaired. Once he stabilized from the heart and lung issue he was prepped for intestinal surgery, which was successful and, after a few days, they let him begin to receive milk. And then, finally, after five weeks of pumping, which, by the way, was WORSE than the pits, I was able to nurse Benjamin. He did great. At that point, after six tumultuous weeks in the hospital, we were able to bring Benjamin home to his eagerly awaiting siblings. What JOY!!! I wept for joy in the overpass that connected you to the parking lot. I felt like a prisoner whose death sentence had been commuted to life, no pun intended.
Benjamin was born with two holes in his heart (ASD/VSD) that could not be repaired till the age of 4-6 months. Once his life threatening medical crisis was resolved and he put on some weight we were able to plan for his cardiac repair surgery. The medical team at UVA was fabulous…they were beyond amazing from start to finish.
During Benjamin’s hospital stay at UVA we were blessed by the kindness of so many folks. From our stay at the Charlottesville Ronald McDonald House, where every need we could possible have was met by their supportive staff, to the many meals that were sent to our children while we were away six weeks, to the hospital visitors who came just to pray for our little man, to the cards, gifts, prayers, and words of encouragement from so many. And we can never forget the two week visit to stay with our children made by our daughter-in-law’s mom, Kristi, which blessed this mama’s heart to no end. We were amazed by how our emotions were so close to the surface for weeks on end. Whenever someone would share a kind word, a much needed hug, an offer of help, or just an understanding gesture, we were immediately on the verge of tears and had to explain why, for example, someone’s gesture to put gas in our car brought us to the point of tears.
After Benjamin’s discharge we had multiple visits to the pediatrician to monitor his not so great weight gain and, also, cardiologist. We also made the long treks back to UVA to see a pediatric endocrinologist to treat his hypothyroid condition. I thought it would be interesting to list all the different health professionals (medical and otherwise) that have shared in our special adventure with Benjamin. Here goes … the aforementioned pediatric cardiologist, pediatrician, and endocrinologist, a general surgeon (intestinal repair), radiologists, anesthesiologists, pediatric cardiac surgeon (cardiac repair), a newborn physical therapist and infant teacher (who were assigned to him during his NICU stay), social worker, respiratory therapists (who constantly monitored the various respirators he was hooked up to), the ECMO folks (2 highly trained nurses who were required to maintain a 24 hour presence while he was hooked up to ECMO), an in-home speech and physical therapist (who have become a regularly part of our lives), a special services coordinator, a private speech and language pathologist (that we have hired to work with us in implementing our preferred method of speech and language acquisition), a chranial-sacral therapist (for complimentary treatment), a developmental pediatrician, a gastroenterologist, and the various ER and hospital staff along the way that have treated him at his multiple visits and hospital stays for his bouts of croup, asthma, and RSV.
These are just a few ways our little Benjamin Zebediah Green has set our feet on a special adventure that just gets sweeter everyday. We look forward to our days with Benjamin, unfolding each one as an adventurous gift from above. Thanks for reading my tribute to Benjamin.
