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Ever elusive sandman

Of course, I felt as though I had realistic expectations having been a mom before.  Sleep, for more than a few hours at a time, would be elusive the first year and then improve with time. Initially, Kimberly woke several times a night to nurse, not a problem with co-sleeping. She took short naps, mostly while on the go in her Ergo as I chased around her 3 year old sister. When I did lay her down for naps she would wake in less than an hour in a pool of spit up. I found myself hoping the outcome would be different each time I went to pick her up…yet it never was.

Kimberly’s reflux the first year was not “silent”. She spit up after she ate and often in between. In an effort to control this I removed typical culprits from my diet and eventually she was prescribed Prevacid. I recall some improvement but not much with each approach. Eventually, dealing with long term diarrhea and what I suspected was Leaky Gut due to the inflammation, Kimberly developed a sudden and significant case of eczema.

So much of her stories are intermingled so they are hard to separate by subject, as is often the case with children dealing with these issues.  As we passed through the first year and into her second the reflux became “silent”. This also coincided with me on a total Elimination Diet to rid her of the eczema, the diarrhea, and the spitting up. I had introduced some solids previously but backed off and continued with exclusive nursing. I was initially eating only: pears, rice, chicken, and squash. All categories of potential allergens removed.  This made a difference for her. The spitting up decreased significantly, the eczema went away (and has never returned), and her stools decreased in their frequency and became more “normal”.  We slowly introduced items back in to my diet and then as solids for her.  One thing this didn’t really assist with was her sleep.  I often wondered if it was a neurological issue…some things I am not sure I will ever know.

I weaned her around 22 months. I was beginning to really resent the constant nursing at night, it is a feeling that is hard to describe as I wanted so much to help her in any way.  Looking back I can see she requested it to calm the pain from the reflux. My theory that Kimberly had silent reflux was based on the following: the repeated swallowing as I walked the floor with her at night, the constant night waking with crying as if in pain, difficulties getting back to sleep, and her increasing oral aversions (to food/eating but not mouthing).  I tried everything with the napping to try to make up for the horribly broken nights. I slept with her, walked miles with her in the carrier, drove; whatever I could and yet we could not seem to find a way. I knew she was sleep deprived. I was a zombie most days. The exhaustion resulted in an extremely short temper with my toddler, and really struggling to keep up my energy and optimism as we waded through one medical mess after another. Between drs visits and therapies it was fairly constant.

Napping in the Ergo at Heather's wedding

Napping in the Ergo at Heather’s wedding

I truly feel the reflux was a major contributor to her fitful sleep.  I suggested this may be occurring to the pediatrician and they ordered an upper endoscopy and barium swallow. The results showed inflammation and reflux occurring during the swallow test, but fortunately little to no damage to her esophagus.  Before I knew it she was less than 20 lbs (at 2 years old) and on an adult dosage of Prevacid.  The next year or so continued with multiple night wakings, requiring rocking or walking for sometimes over an hour to return to sleep. We began giving her melatonin before bed and this was very helpful with the initial falling asleep time required. What had taken over an hour before with walking was now more like 20-30 min. The carpet in her room of our new house already showed wear in the circular patten I walked nightly.

Kimberly graduating to a big girl bed before g-tube surgery

Kimberly graduating to a big girl bed before g-tube surgery

By the time Kimberly was 3y 4mo she had a G-tube placed for feeding. Her caloric intake and variety of foods was well below minimum for any hope for growth and development by this point. She teetered on being dehydrated constantly.  The day after we returned home from the hospital she slept all night with tube feeding via a pump. At 7 am I couldn’t take it anymore and went into her room, afraid something was wrong. I believe being full and hydrated for the first time in a very long time contributed to that night’s restful sleep for her.  For so long eating was pain for her. She too was exhausted. The pump feedings proved to be very difficult and we were able to stop using once we changed over to a blenderized diet. More on that in another post. Kimberly still wakes every night, comes to find momma or dada and falls back asleep until the early morning hours. It may not be ideal for an almost seven year old, but I will take it. Any day of the week, I will take it.

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  1. Thanks for sharing your story, Dani. I know it helps you to be able to write this touching account of your life. I hope all is well with you and your family now. I miss seeing you, but at least I keep up with you on facebook.

  2. This post moved me to tears. I am simply amazed by your strength and patience as a mother. Thank you for sharing with your beautiful writing.

    • If it makes you feel better I cry every time I write one 😉 xoxo

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