Ordinary became extraordinary…


Like every Saturday for the past 13 months since both babies came home from the NICU, we were spending time in the afternoon playing in the living room.  Q was “salamandering” (Yes, I know that this is not an actual verb but it’s a hilarious version of commando style crawling that apparently when done properly a 30 inch 22 lb toddler looks like a salamander) all around the room to pull himself on every piece of furniture he could find and E and I were working on the exercises from her Physical and Occupational therapists.   All of a sudden, what had been very ordinary activity became extraordinary x 10! Ok, perhaps just for us, but imagine the moment when your child meets a milestone and how happy and excited you are, now multiply it for us (of course your excitement is your own amazing experience) but for us as this has been a moment that has taken 17 months of daily work to achieve, E sat unassisted for longer than 10 seconds for the first time.  Minutes, 5 minutes!  I went from coaching and supporting to crying with joy over her as she suddenly could do this task which we had been working on for months and months. Here’s why…

Ever since we brought E home from the hospital after 4 months of daily trips to the NICU to hold her, we knew something was off.  When you are in the hospital in this situation, the nurses often try to comfort you, telling you that the babies know it’s you and they turn when they hear your voice and know your scent when you hold them skin to skin. With Q, I could hold him often and definitely sensed he knew I was his mommy. With E she got an infection early on and had to be placed on a C-Pap machine which made it hard to hold her and often nurses weren’t comfortable making the adjustments to help us hold her. I don’t know if this impacted her, but I do think that a concern always lingered.  When it was time to come home, she came home on oxygen and so there were physical challenges but we knew it was more than that, but we still held out hope that everything was ok and didn’t know enough again to really push the issue. What we did know, is that E moved all the time. She never stopped.  Having brought Q home 2 months before, we knew that this was not normal baby activity.  Q was only 2 minutes older than E when they spontaneously arrived and he was abit slower in his progression in the hosptial but once home, he soared.  With E, she never looked at our faces, and in fact avoided them. Her movements were erratic and almost spastic, her newborn reflexes weren’t fading and she seemed almost in her own world.  We asked her team of doctors, Pediatrician, Gastro, Pulmonary, Cardiologist, and High Risk Pediactric Development doctors what their thoughts were and “immature nervous system” was the answer we continued to get over and over.  Time passed and E was passed over for OT/PT services upon an evaluation from our state run Regional Center.  At the time, we were told that we can take this as a good sign that she isn’t “bad enough”, ahhh naive parenting. (As a sidenote, there should be a handbook for parents leaving NICUs and other intense situations involving children).  3 weeks after bringing her home, she had an ALTE (Apparent Life Threatening Event). I believe with out a doubt there were guardian angels all around her that night as there were many “what ifs,” but for that night, she stopped breathing at 3 am and had to be resuscitated by our angel night nurse who happened to be there that night so we could get some sleep. We had been using her 3 nights a week, and normally, she would have not have been there that night, but we were exhausted and had asked her to come on whim. Based on her regular schedule with the babies, at the time she  would have been in the kitchen washing their 2/2:30 am bottles, but she had decided to stay with the babies because she was worried about Q pushing and ultimately choking on his reflux.  However, as she watched Q  she noticed E suddenly changing from red to purple to white to light blue, she had stopped breathing and gone limp.  M yanked her from her chair and started CPR.  Meanwhile, since M had been in our home to teach us infant CPR a few weeks before, when we heard her yell out “call 911” in the deep of night, I made a noise I never knew existed and in a fog scrambled to call 911.  The only way to describe the noise is to compare it to that of a mamma bear when she is protecting her young from an intruder. She is standing on her hind legs roaring at the intruder and this is the deep guttural sound that came from deep inside me.  I was shaking uncontrollably as I tried to dial 911 from our cordless phone (yes, you should always keep a land line in case there is an emergency, dispatch can locate you more quickly).  Ultimately, I ended up in the kitchen dialing from a stable and stationary key pad where I explained the situation and the fire department arrived within minutes.  KSP was in the nursery with M, E and Q and she had finally started breathing by that time. As we packed up to hurriedly get into the ambulance and head to UCLA,  M stayed behind with Q and even Max (our semi-toddler cat) knew to cooperate and not make a break for it in the dead of night.  In the ER, we did every test upon arrival and as they inserted the IV, I watched as E looked to have what both an intern and I thought might have been a seizure.  2 days of being in the PICU with EEGs, EKGs, and Echo Cardiograms, all her results came back normal.  There was only reason left for why she might have had this event.  That day, we had given her 4 month vaccines and she likely had a fever and overheated with a possible reflux kicker.  After a number of consultations with her Pediatrician Dr. Scott Cohen (who we LOVE!!) and Dr. Shervin Rabizadeh (who we also LOVE!!), they supported me as I made the decision that we were willing to risk bringing her home as she hadn’t had an event in 2 days.  (I will always be grateful to them for their wonderful support of our family during these times…these decisions are very difficult and knowing you have smart compassionate people in your corner makes a huge difference).

Fast forward 13 months…

So much has happened since then. E has been accepted into the Regional Center program (more on that process to come) and receives therapy 6 times a week for which we are so so so grateful.  The women (all her therapists are women) are so wonderfully supportive of E, Q and us.  They listen as we worry and support us with laughter at our lackluster attempts at humor to alleviate our concerns.  They love our babies and take such pride in their accomplishments and do their best to guide us in this journey through the unknown.  Words like Autism, Cerebal Palsy, Dystonia and Special Needs, float around us and bounce off us like a game of Pong.  Until we can do an MRI on E’s brain, we won’t know what damage may exist and to what extent.  However, we also know that we keep seeing progress in what seem like very ordinary moments that can very quickly become extraordinary.   These moments keep our hope alive which is the greatest gift…hope.

4 thoughts on “Ordinary became extraordinary…

  1. Shannon, this is beautiful. I look forward to reading about each and every new favorite day and even more so for the next time I get to be with you and your amazing family. You are an inspiration to all you come in contact with, Shan. Love and hugs to you all.
    Jill

  2. Thanks for sharing your story. As a lousy correspondent, I was aware you’d had twins and that there had been some complications from your Facebook posts, etc., but I had no idea what was really happening. Raising a child is difficult. Having twins — infinitely more so. Then to compound that with “special needs” … well, that takes a lot of courage. I was blown away by your post and inspired by your strength and dedication. I’m looking forward to reading more and keeping up with you and please know that as you travel along this road, my thoughts are with you.

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