1.) Cried outside of Friendly’s after my first appointment, I knew something wasn’t right. Ben thought I was crazy and hormonal, like the time when I was pregnant with Julia I threw a grilled cheese (with the plate) at him.
2.) Easy pregnancy, a 20 week anatomy scan showed minor hydronephrosis (water retention in the kidneys). Anatomy scans every four weeks after that initial scan.
3.) Every scan, the doctors would find something else that was an issue but it would always be on the higher end of normal so nothing to worry about.
4.) 34 or 36 weeks, Beckett became IUGR (he stopped growing). I was given bi-weekly NSTs (non-stress tests) for the next two weeks.
5.) At 38 weeks pregnant I went in for a regular NST, instead I left a couple hours later on route to a new hospital with a NICU. I was to be induced. It was August 4th 2011.
6.) That evening in a windowless labor room, the induction began. Beckett was finally born the next night, by emergency c-section, we both had a bad reaction to the anesthesia.
7.) At first, Beckett just seemed a bit tired, he wasn’t a good nurser. Then he began to get cold. Then he couldn’t breathing on his own. By the time he was transferred to Boston Children’s Hospital, he was dying.
8.) Two days after he was born, Ben and I sat in a conference room and were told by a dozen medical professionals that our son would most likely die within the next week. We were offered comfort measures for him, but we refused. Ben and I agreed to fight for Beckett.
Pictured: Beckett, 4 days old, at his baptism in his NICU bedspace.
9.) The genetics/metabolism team became our lifeline. They made up a medication regimen, worked with the pharmacy on mixing up the correct medications, even flew in a special oil from Europe that might help with the leukodystrophy (white matter brain degeneration due to the blood-brain barrier, medication couldn’t cross this barrier therefore while Beckett’s body responded well to the medication his brain continued to die off).
Pictured: Jules spent much of her early childhood in the hospital, we tried to let her be as hands on with Beckett’s care as possible.
10.) At 6 or 7 weeks old, Beckett was doing well enough to go to the general floor (a great step towards going home). We left that afternoon (someone had donated Red Sox tickets), when we came back 4 or 5 hours later I picked up my limp son from his hospital bed and screamed for a doctor.
11.) Beckett had sepsis, somehow an infection got into his central line and directly into his bloodstream. Back to the NICU we went, where we stayed for 3 more weeks until Beckett was ready to go home.
12.) We went home at 10 weeks old. Beckett was on a feeding tube through his belly, three medications to be administered eight times a day, multiple follow up appointments at the hospital and weekly blood draws. We were put in the care of hospice home nursing, for no one really knew how long Beckett would be with us.
Pictured: Beckett’s “newborn photos” done by the FABULOUS Beth Benoit Photography
13.) Beckett did not die.
14.) In fact, he was amazing. Beckett learned to sit unassisted, say “momma”, play, laugh. He was just unbelievably wonderful.
Pictured: Beckett in his gait trainer, a first step to walking! Summer 2013.
Pictured: Beckett joined the Special Olympics bowling team for a couple of practices.
Pictured: Beckett helping with daily medication preparation.
15.) A month after we came home, I found out we were pregnant for the fourth time!