“A terrifying abyss”: Léo Lee’s Story

Leo Lee

Matilda is 9 now. She is still quite a bit smaller than all her other 9 year old friends. Her 5 year old sister is catching up! But size is no impediment. She reads at a 7th grade level and is very good at maths and science. She rides horses (which has always been her dream) and wants to be an equestrian jumper. She is known for being a kind nurturer at her small Montessori school. As the oldest in her age group (6-9) she mentors and guides the 6 year olds, almost to the detriment of her work. Her health has been fine, though she’s always frightfully skinny! Let’s just say she has to like capris, because it’s hard to find clothes that fit right. 

When Matilda was born, April 8th, 2006, Jon was out of town at a conference in Madison WI. We had moved to Texas 20 months before, and knew few people and have no family within 1000’s of miles. James, her 2.5 year old brother, was born on his due date, so that’s what we expected. It was a Friday rounding out an exhausting week. I picked James up from school and he looked tired. I looked tired. Later, his teacher said she should have warned me: she claims “I had that exhausted pregnant lady about to give birth” look. At supper, James started throwing up. At 1:30 amSaturday April 8th, I had one load in the wash, one load of sheets on the dryer. James was lying on a pile of towels after I stripped my last set of sheets off and dropped them next to the washing machine. I drank a glass of water, rubbed his back a bit as he moaned. At 2 am I finally went back to bed. The second my head hit he pillow, I felt my waters break. I literally jumped out of bed (I did not want to wash any more sheets. Because the carpet is so much easier to clean? Like I was getting back in that bed tonight?) and crouched on the floor and shouted “NOOOOOO!”, just like the movies. I knew that I could not get a shot to slow labour. My waters had broken, there was no turning back. I knew that at 2 am, Jon could not make it home in time. I knew that of the two friends I had met so far, one was in DC with her extended family, the other had a house full of strep throat. She was coming, almost 6 weeks early, I was alone with a puking toddler. 

I called my OB/Gyn first. She was fortunately the one on call, because she had my back, as you will see later. She’s also calm and funny. I wept, telling her I was alone, what was I going to do, where would I leave James?!? She asked me a simple question: do you have neighbors?  Yes, I do. Not ones I knew well, but ones I could trust enough. Our neighbors to one side had 4 young children, one James’ age. We kind of knew them. Since the husband's parents were ill, they picked up the phone after 2 rings, at 2:30 am. He offered to watch James while she drove me to the hospital. I don’t think I packed anything. I know late she drove home to grab her camera. I was beyond glad that my own OB/Gyn was on call: as soon as I arrived the nurse told me she was “just going to pop an IV in”. I have major needle phobia. I don’t do IVs. I refused. She got mad. I told her to call my doc. Well, my doc is also needle phobic, so she had my back, But the nurses hated me thereafter. I won’t go into the world of difference between hospital midwives in Iowa, where the baby never leaves mom, the pedi comes to your room and explains everything he is looking for and sees, you eat what you want when you want, and the process that made the 50’s look visionary that I experience in Texas. 

When Matilda finally arrived at 8:10am, everyone laughed. She was quite small (give that her older brother was 8# 15 oz and her little sister nearly 10#) and was rounded up to 6#. I know that’s normal weight, but in our family it’s quite small. She was so tiny, and my second, when I heard “It’s a girl” (I’m old school, I like surprises), I replied “That’s it? We’re done?”. I was surprised. In comparison to her brother this was like drinking a glass of water. I was also in for a rough week thats to the hospital’s 50’s attitude. To begin with, they cleaned her with mineral oil (a petroleum distillate - I am not down with that) and wrapped her up so much I could barely see her face, let along enjoy skin to skin time. Before I could register anything, they took her away for “processing”. 

I felt like my heart had been removed and I wasn’t sure when I would get it back. I was like a mother tiger in a cage, pacing. It was 3 hours before I got to hold her again. Every time I wanted to hold her was a fight. She was early and had terrible jaundice. They wanted her under the bili-lights as much as possible, which I understood. But I also knew she needed to drink, that also helps. They wanted her to eat on a schedule, I wanted her to eat on demand. They would take her away every morning for 2 hours for the pedi’s convenience, then never share the pedi’s thoughts. I missed her all the time and just wanted to abduct her and go home. My OB was great again, and found a reason to let me stay with her, since she needed the maximum new baby stay and I needed the minimum stay. We got homeMonday. My parents arrived TuesdayWednesday, as I was feeding her, I looked down. She was blue from head to foot. I am good in a crisis. I gently picked her up, so that she was upright and patted and rubbed her back vigorously. She got pink again. She cried a bit, wanting to nurse. Since she seemed OK, I decided to let her nurse again. Before long, she started to turn blue again - I was not taking my eyes off her now. Walking to the kitchen, I asked my mom if this was anything she’d ever seen. She told me I was seeing things, exaggerating. We have that kind of relationship…  So I called our pedi, who calmly told me to go straight to the ER. 

That was the next wave. She was not 5 days old. She had to be on the exam table so they could look at her. She was crying and I could not hold her. She was hungry and I could not feed her. They had to draw blood. That is not easy on such a small infant. At one point, one nurse asked the other if she had a wet wipe because “my hands are sticky from all this blood”. Even though I knew she was helping my daughter, it was all I could do to restrain myself. When the doctor came in to perform the spinal tap, I was grateful my mother was there. I went to the bathroom and collapsed, weeping until there was nothing left. (The memory is still hard to handle. Fortunately only I have to bear it. Matilda seems wholly unaware.)

I heard from my mom that the spinal tap was easier that the blood tests. I don’t remember what many test she had to undergo. It felt like we were in the ER a lifetime. Whenever and however that ended, I found myself finally holding a very exhausted infant, whose bilirubin levels were through the roof, due to all the stress. She was covered in wires, with alarms that would blare as soon as she stopped breathing. I was under strict orders not to feed her, no matter what, until I was told I could again. And I could not cheat because the “not breathing” alarms would go off if I did. We were being re-admitted to a place for small babies who cannot go to the NICU because the left and cannot bring germs in, but are too delicate for the ICU. If I can find a photo of her, I will send it. She was covered in wires, wearing little eye covers to protect here eyes from the bili-lights. There was a portable bili-light pad for when I wanted to hold her, although they really did not like me to hold my baby “too often”. (Begin a mom really helped me find my inner lion. I held her and fed her as much as I wanted. Scowl and fuss at me all you like!). 

In the end, it was a very small issue. She was fine, but had aggressive silent reflux. This means her food comes up, but goes back down before it comes out. Her older brother had the explosive kind of very messy reflux. Silent reflux is painful for your oesophagus, and infants have a special protection that forces the little flap on the windpipe shut to prevent baby aspirating milk into her lungs. This is why she kept not breathing. But he stress of the ER visit and tests had sent her bilirubin levels out of control and we we’d say in the hospital 3 more days, until that eased up and she could eat and breathe at the same time. 

I still shake, and sometimes cry when I think about it. I know it is in the past, but it is such a powerless feeling, that you cannot do anything to help your baby. You hope the doctors are doing the right thing, and all you can do is trust them. And hope. And cry. And hug. And breathe. A moment that was supposed to be filled with joy has turned into a sudden tornado, for which you were not prepared. The rug has been pulled out from under your feet to reveal a terrifying abyss. Yet, we made it.