And so it begins….
It’s been more than a month since I last posted here. Life with a newborn is a little bit mad! It’s shocking to me that I ever believed I was busy before all this. A busy day takes on a new meaning when a newborn is involved. These past few weeks I’ve been more tired than ever and getting by on stolen hours of sleep here and there. This has resulted in my health taking a hit, and my condition going into what seems to be a controllable flare. Regardless I’ve loved every exhausting, frustrating minute of it. My daughter is incredible and, for the time being, I feel I could spend all day watching her and enjoying the beginning of our life together.
When the little one, who has been nicknamed Dot by friends and family, was a few days old we discovered her thyroid gland failed to form. She’s been on thyroid replacement therapy ever since and the results have been truly remarkable. While Dot has always been a settled baby, she was unusually sleepy for the first couple of weeks. Her tongue seemed too big for her mouth and was always sticking out, giving her 20ml of milk took hours, she had jaundice that refused to go away despite light therapy and in the hospital they’d mentioned her body temperature was unusually low. She was also oddly short when she was born, just below the 0.4% of the growth curve, despite having two very tall parents. We’ve since learned that lack of thyroid hormone affected her in utero and this was the reason behind her symptoms. I was a little upset when Dot was first diagnosed with congenital hypothyroidism. Upset that she had health issues already, upset that she would have to be on medication for the rest of her life, upset she had a condition that, untreated, could have devastating effects. In fact the results of treatment have been so dramatic that I now find myself preparing her meds every day with a smile on my face. Within a few days of starting thyroxine, her little tongue was in her mouth for the first time, her jaundice improved, her appetite grew and her body temperature stabilized Even her length jumped from the 0.4th percentile to the 25th within two weeks!
Of course, getting the medication dose right did involve almost twice weekly visits to the hospital for blood tests. We’ve had such frequent appointments with the pediatric endocrinologist by this point that I feel we should be on a first name basis…! Despite small bumps in the road, as the days passed I started feeling that in the spectrum of disorders one could have we were lucky; this one seemed to be one of the most easily manageable.
And then it began.
Last week my normally very settled, very content baby changed, seemingly overnight. She became irritable, seemed to be in pain during feeds and refused to sleep. After she ate, she moaned and her body went rigid and tense for hours. Her regular bowel movements turned to explosive diarrhea and she started being sick. A few days ago I found a frighteningly large amount of blood in her nappy.
We’ve spent the last week having back-to-back doctors’ appointments; desperately trying to prevent dehydration and figure out what the problem is. The doctors initially suspected gastroenteritis. When her symptoms failed to improve and the stool cultures came back negative for infection, they thought she might be lactose intolerant and she was placed on a lactose free milk. She got worse within a couple of days of starting this milk. Her pediatrician told us a few days ago he thinks it could be a case of intolerance or allergy to milk protein (versus lactose). He started her on a special hypoallergenic milk. She’s been on that formula for close to 72 hours and so far her GI symptoms have not improved. If 48 more hours pass and the bleeding does not stop we have to take her back to hospital.
When I first got ill, my mother would say that she’d rather be ill herself than watch me suffer. I regret to admit I failed to understand her at the time. I was always so sure that a parent’s first thought would be that they themselves try to remain healthy and strong so they can help their child through an illness. I now know what my mum said isn’t a logical thought; it is a primal emotion.
As I sit and watch Dot writhe and moan in pain for hours, I can’t help but think of a piece by Simon Barnes whose little boy faced many medical challenges from birth. It goes: “I wanted him to live with all my heart: Indeed if my heart would have been any good to him, I’d have given it and welcome. That doesn’t make me a saint, by the way. Just a parent”. I remember reading that piece a few years ago and failing to understand that sentence. It was an emotion so foreign to me I was sure it couldn’t be real, sure it was only a dramatization. Unfortunately I am now lucky enough to know it isn’t.
I would do anything, say anything, sacrifice anything and anyone, myself included, to stop my child’s pain. It isn’t logical or doable, and unfortunately Dot’s pain and health are entirely beyond my control and on a logical level I do realise it, but it is an overwhelming emotion that leaves me breathless and raw with its intensity. So it seems that I am now officially a parent….
Please keep your fingers crossed for my little girl this week.
I hope this finds everyone well!