I never thought I would look back and tell God “thank you” for Jacob’s jaundice. At the time I was resentful that I could not hold my newborn baby in my arms as other moms do. I had to feed him under the multitude of lights and watch him cry from laying on the stiff hard bed, and all I could do was lay a hand on his belly and say, “It’s going to be ok, mommy is right here”.
People always say God works everything out for good, but I never truly believed it…until now.
Jacob was born with Beckwith-Wiedemann Syndrome, a rare overgrowth disorder that even the world’s best doctors know little about. The hospital I delivered at noticed Jacob shaking uncontrollably a few minutes after birth. They quickly tested his glucose level, and found it dangerously low. A bottle of formula was given to him, they waited, re-tested his glucose, and then gave him a few more ounces. The hospital staff assumed he was fine, so we didn’t think anything of it. The doctor seemed more concerned with his high-bilirubin, which wasn’t declining even after being under the bililights. We had already heard that they suspected he had some sort of unknown chromosome disorder, and we were in a whirlwind of emotions. I could barely think straight with all my thoughts consuming me. On Friday, after 3 days of bililights, the doctor finally decided to release Jacob, and told us to follow up with our pediatrician on Monday.
I still remember that weekend, trying desperately to get Jacob to latch on to eat, and wondering how much milk he was actually consuming. I remember how orange he looked, and wondered how I was supposed to tell if his jaundice was getting worse. I remember placing my tiny naked newborn babe next to our large patio window, in hopes that the indirect UV light would help just a little.
By Monday morning, he looked more orange to me. I also noticed how difficult it was to keep him awake to feed him. He was constantly dosing off, but on Monday, I had that gut feeling that something was wrong. Jacob seemed lifeless to me, like a rag-doll, with limp lifeless arms. He didn’t act the same as when we were in the hospital on Friday. But, knowing that most new moms over-react, I tried to remain calm. We had an appointment with his pediatrician that afternoon, so I patiently waited for his advice. When speaking with the doctor, he mentioned that Jacob looked fine, and that he was acting like a normal newborn. I breathed a sigh of relief, but still had that nervous gut-feeling. I ignored it, and we went on with our day. After finding out he had a chromosome disorder, not knowing what he had or what to expect, I easily accepted positive news without question. The doctor sent a bilirubin test to the lab to check his jaundice and we made the long drive home.
Ryan and I arrived home, said farewell to both Grandmas, and sat down on the couch for the first time as a family with our 6 day old baby. I had been looking forward to this moment since Jacob’s birth, to just sit in the stillness of our living room, rocking my newborn baby in my arms and breathing in the newness of being a mom.
I looked over at Ryan’s face, which turned from concern to worry, as he listened to the voicemail message from the doctor.
“What? What did he say?” I desperately asked.
“We need to take Jacob to the hospital now! The doctor said his bilirubin is too high,” Ryan quickly blurted.
A flood of tears began to well in my eyes. The long awaited night of spending time as a family quickly disappeared into a night of terror, as we threw random items in the empty diaper bag before we rushed off to the children’s hospital.
Our fears worsened when the NICU doctors rushed Jacob in, starting pumping him with IV fluid, and hooking him up to machines. The doctors were more concerned with his glucose levels, which were dangerously low, rather than the high-bilirubin. They later took him for an MRI and prepped us with the facts that blood sugar levels that low often lead to brain damage. We didn’t know what to expect for our little Jacob.
Here we were expecting to be in and out of the NICU after his jaundice was treated, and now a few days had turned to weeks. It was one of the most horrifying experiences I’ve ever had to face. All I can say now, after looking back on this moment is “thanks be to God”. I don’t even want to think about what could have happened had it not been for his jaundice sending us to the hospital. Jacob’s MRI showed no brain damage and after several weeks, Jacob’s hypoglycemia began to level out on its own.
I can’t imagine why the on-call physician sent Jacob home after he initially had low blood sugar at birth, or why his pediatrician did not check his blood sugar in the office on that Monday afternoon. I still beat myself up for not pushing the issue. I know many of you know Jacob’s NICU story, but I felt I needed to stress how important it is to make sure your doctor monitors your baby’s glucose levels. Most infants born with Beckwith-Wiedemann Syndrome have hypoglycemia, and a few simple measures can prevent brain damage and even death. Don’t dismiss your gut feeling as I did. Jacob’s situation could have been a lot worse. We would have never known about his low blood sugar if we hadn’t been brought in for his jaundice.
So for now all I can say is I praise your through this storm, for you are my God, and I am thankful for your mighty hand that saves.