I'm a little late starting this. Kira is 15 weeks old on wednesday and currently weighs 7lb 15oz. She was born 5lb 4oz. The nurses are coming to the house today to weigh her. Praying she's 8lb now. The last few months have been so difficult; a three month obsession with getting her to take more milk and, in the last month, trying to keep it down.
Kira was diagonised at 10 weeks old with a large 1.5cm ASD (Atrial Septal Defect - in other words, a hole in her heart). As a result, she has an enlarged liver, fluid on her lungs making it difficult to breathe, heart failure and the right side of her heart is enlarged. I could be wrong here but researching more on the subject has suggested that these other symptoms don't tend to happen until the child is well until adulthood. So why has it happened now?
Following diagnosis, she was put on two diuretics to take the pressure off of heart and, subsequently, her other organs. This actually seems to be working. Kira used to be tired constantly; she'd sleep, wake up for a feed, take a small amount then fall asleep again. It was such a battle to keep her awake long enough to take even an ounce of milk. I tried everything from changing her nappy, tickling her to washing her face. For her size, she only needed (according to the hospital she was born at) around 45mls to gain weight. This wasn't working and she was gaining weight so slowly, despite sleeping all the time. The nurses from the neonatal unit who were coming out to weigh her at home accused me of keeping her up, playing with her and said that was why she wasn't putting on weight. She was never awake long enough to play with her and well, she was never really interested. She just seemed so tired all the time and to be honest, I wanted her to sleep. The nurses fill you with fear that any movement at all will burn calories and she'll lose weight. But as the weeks went on, it was becoming more and more obvious that there was something very wrong. Well, to me, at least.
I took her to several doctors at my gp surgery, to the children's hospital, to the walk-in centre. Every nurse that came out to the house, and my health visitor, would be bombarded with questions as soon as they walked through the door. They would witness me trying to feed her and how much of a fight it was. Her breathing was becoming worse and I could see she was sucking in under her ribs with every breath - which is a sign that it's taking extra effort for her to breathe. She was taken by ambulance to a&e several times for various things and everytime I'd point out her breathing and the fact she wasn't really growing. and no one seemed interested. she wasn't even on the bottom line of the centile growth chart, and she'd gained around just over a pound in two months.Not a single person thought there was anything wrong with this. She spent a month in the NICU when she was first born, (something I'll go into another time as it'd take about three days to write about) and she didn't gain a single ounce. She left the same weight as she was born. I couldn't get anyone to listen to me. People treated me like I was just being an overly worried mother and I was starting to think I was going crazy.
(To be continued)
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