Jaundice & Genes

My Dearest Belle,

Papa and I both had jaundice as newborns. This is a fairly common issue amongst asian babies, and I expected some sort of run-in with it once I had a child of my own. God knows Papa and I were NOT ready for what was in store for us.

The day after you were born, the nurses took you to the nursery to draw some blood. Your bilirubin total level came back at 7.5 - JUST below the max line of 8. The pediatrician explained that it was too low for treatment, but too high to not be concerned.

Papa had forgotten to pack any extra socks or underwear in our go bag, so by the day after your birth, he was uncomfortable and ready to go home. I was feeling better than I thought I would (Papa started calling me Wolverine for my amazing healing powers), and I was eager to get home and sleep in my own bed again as well. So we made the decision to request a discharge that day. Part of the discharge process includes a number of tests for you to make sure you were healthy and safe enough to leave the hospital. You passed every other test with flying colors, and because of your bilirubin levels, the on-call pediatrician decided to send us home with a Bili-bed.

Her instructions were for us to strip you down to just your diapers and keep you on the bed throughout the weekend. Then, we were to call your regular pediatrician’s office first thing Monday morning for a save-day appointment to get an updated bilirubin level for you.

The problem was that you liked to b swaddled TIGHT when you slept. You had a tendency (like all newborns) to strike out your arms and legs in your sleep and scare yourself awake. So unless you were swaddled tightly, you wouldn’t be able to sleep soundly at all. The bili-bed provided no method for holding you down - just a cloth envelope that was supposed to keep you exposed to the LED lights from below. Papa and I tried a number of different methods, and when all else failed, we had to call the on-call pediatrician after hours to ask if there was ANYTHING else we can do to help you. Finally, we had to resort to using multiple swaddle blankets to literally tie you down and restrain you to the bed.

On Monday morning, we got ready and headed out to Dr. Phillips’ office. They took a measurement off your skin, then drew blood to get a more accurate reading. The skin test came back as 22… a big shocker to all of us. Dr. Phillips said that she wanted to wait for confirmation from the blood test before talking about actual treatment options, and so, we had another day of waiting ahead of us.

Papa and I tried to stay positive - Dr. Phillips said that of all the things that COULD be wrong with you, this was the BEST bad news we can get as new parents. But she called in the afternoon to confirm that your blood test showed a bilirubin level of 24.8, and she had already made arrangements with Cedars-Sinai’s NICU for you to be admitted for immediate treatment.

We were stunned, and everything else was on autopilot. We checked in to the NICU, where they told us to strip you down to your diapers, then they whisked you away into an incubator where they stuck an IV in you the size of your forearm, stuck a number of wires on you, laid you in an incubator, put on blindfolds to shield your eyes, then turned on the LED lights.

Papa and I sat there and watched you… helpless… powerless… scared out of our minds. Everybody told us that you were a BIG baby, but in that incubator - with all those wires hanging off of you, crying your lungs out because you had no idea where you were or what was going on - you looked so tiny and frail.

And it broke me.

Papa, of course, was strong for both of us, but I was completely and utterly broken. A few hours later, as the doctors were making their rounds, we were told that you would most likely need to stay until Wednesday. Given our genes, the doctor explained that Papa and I were pretty much guaranteed to go through this with every biological child we would have. Every. Child.

Papa decided that I should go home, and that he would stay the night to make sure you weren’t alone. He walked me to the valet, got me in the car, and sent me off for the night.

And I sobbed the entire way home.

The next day, I went back to the NICU bright and early to check in on you and Papa. I’m sure we were both a sight for sore eyes - neither of us had gotten any sleep. It was clear that we wouldn’t be able to keep this up until Wednesday and still have the strength to take care of you when we brought you home on Wednesday. So, it was decided that we would both go home, rest up, and come back later that night to visit you again.

And this began what would end up being a week-long struggle of visiting you at the NICU, waiting on test results, getting let down, crying my eyes out, then going home hoping for a better tomorrow. Your bilirubin levels kept lingering at 17, and every time they took you off the lights to see how you did, your numbers would keep rebounding, causing the doctors to put you back under the lights.

Then finally, on Saturday evening, we had a breakthrough. Your bilirubin level hit 13.3! The doctor asked if we could leave you there for just ONE more night - just so they could test you again the following morning after some more time without treatment to see if you would rebound again. We thought it was better to be safe than sorry, so we agreed.

The following morning, they ran your test at 5:00 AM with a rush on the results. Papa and I arrived at the NICU a little after 7:00 AM, and we were told soon after than your bilirubin level hit 13.6, and we were officially discharged to go home. Of course, we had to follow-up with Dr. Phillips first thing Monday morning, but we were finally allowed to take you home.

During this week, there were so many people praying for you - interceding on our behalf to ask God for his healing and intervention with the jaundice that just wouldn’t go away. Papa and I had so many family and friends constantly checking in on us - asking us how you were doing and how they could support us. It was a reaffirmation of just how loved we are as a family and how deeply you were cared for… and you were only a few days old!

It was a terrible and difficult week for Papa and me, but it was a reminder that we are surrounded by a community that loved and fought for us. It would have been easier for everyone to say, “Oh, jaundice is so common! You’ll be fine - don’t worry!” and let it be. But not the community we stand with - they kept asking for updates and poured out their prayers and encouragements to help keep Papa and me going.

You, my dearest Belle, were born of and into love.

Love always,
Mama