The gift of touch

Many of you know that when Amber Joy was born, she was very early...well, God wasn't surprised, but according to the 40 week gestational calendar, she was 14 weeks early. When a baby is that premature, and there is a decent NICU, the baby will spend the next several weeks in an incubator. They will receive as little stimulation as possible, and when their senses are stimulated, it will be for short, controlled time periods, typically with only one sense "awakened" at a time. For example, it is routine in a NICU for parents to be told only to touch, but not to sing or talk to the baby simultaneously. Or, if they want to make eye contact, not to touch. These babies are so tiny and their brains are still developing, that it is believed that over-stimulation can lead to heart rhythm changes, blood pressure increase, overall fussiness, and even hiccups.

We don't know, but we assume that after she was born, she entered the NICU and these protocols were put into place. She would have likely been touched only when absolutely necessary for diaper changes, IV/ventilator maintenance, and other medical procedures. The NICU had very caring nurses, and when we visited the Taiwan hospital where our girl was born, we met a precious social worker who had been on Amber Joy's particular case, working to find a family. We imagine that this social worker visited her at times, perhaps even touching her. When Deana Pan found out about Amber Joy, she visited her as well. We know she was well cared for in the NICU.

In November of 2015, our nephew was born in Pensacola. In an odd turn of events, he was born at 26 weeks and 3 days, exactly like Amber Joy. It was surreal to see his tiny body, fighting for life in that incubator. He wore little velcro "glasses" that kept the glare from the heat lamp out of his sensitive eyes. Justin's sister wasn't even allowed to touch him for several days because of his frail condition. We spent time at the hospital there after his birth so we could see him and visit with Liz. One of the things the nurses told her was that, when she touched him, she should do it with a firm touch, not light and feathery. They explained that gentle touch produced irritability in these babies: they needed pressure, no stroking, and just a firm hand that says "I'm here."

As I thought about that over the next few days and weeks as our nephew slowly fought his way out of the NICU and home (in February), I was surprised at the range of emotions that hit me in the face. Every update from my sister-in-law about our nephew was like getting to experience what it might have been like for Amber Joy. There's more to that, but I've decided not to divulge her story in my blog since it's HER story and not mine...

Our nephew's journey has made me aware of some things that we began to try to integrate into our life with Amber Joy. I've discovered that she loves a firm hand on her back while she's trying to go to sleep. She fidgets a lot, and if we leave her room before she's asleep, she'll call us back in half a dozen times. But if I lie next to her with just one hand heavily on her back, she's asleep in 15 minutes. When she was a baby, many nights, I remember sitting on the floor, holding her hand until she fell asleep. She's super ticklish, so light, feathery touch is not her favorite.

She is also easily stimulated. If there are too many senses being used all at once, she is prone to meltdown. It's easy to get aggravated when she doesn't make eye contact while she's eating, playing, or doing any number of other things, but because of what we now know, we're much more forgiving, realizing that it's not that she is being willful, rather she is sometimes incapable of managing more than one or two senses at a time.

Honestly, there have been days when I've grieved the fact that we weren't there throughout Amber Joy's first months. I wanted to be there to touch her the first time, feed her, hold her, dress her, change her, and learn every single detail of her. But instead of dwelling on the time we didn't have, I'm choosing to concentrate on the now. At the end of the days, we're so tired. She's quite the chatterbox and by 8:00 p.m., we're done. But then I hear, "mommy, you snuggle with me?" Not every night, but most nights, I'm reminded that I have a chance and an invitation to be there for her NOW and that every time I lay beside her, sing to her, pray with her, place a firm hand on her back, it's sending a message to her. I hope she hears that message loud and clear: we're here and we're with you...FOREVER.

P.S. Our nephew is doing well! He is home, seven months old, and he's growing every day. We can't wait to see these two get to know each other as they grow...


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