11 Mar 2008

Fallen off the bottom of the chart

Whoops! I had a nice long chat with Debs last night (dietician friend who specializes in preemies) and she told me Enya has now fallen off the bottom of the growth chart i.e. under the 3 percentile line. The scariest thing is this is the preemie growth chart and adjusted for her age. When Enya was born she was on the 10 percentile line and should have maintained this position on the graph. Debs was so concerned she spoke to her consultant in the NICU about Enya, he immediately offered us an appointment for this morning saying he was also concerned and would like to see her. The only problem is he is in Ireland and we are in Germany, so no go. He did recommend with her history (grade 3+ brain bleed and problems sucking) she should have a MRI just to check everything is still OK on that side. That will be fun, I can't even get my paediatrician to do an ultrasound to check her kidneys as was recommended in her hospital discharge letter, now I have to try talk him into referring her for a MRI.

Everyone has been poopooing my worries and telling me I'm overreacting and now I find out I had every right to be concerned, I feel vindicated but more than that I feel let down by the doctors (and therapists) whose job it is to follow up this fragile micropreemie!! I'm now going to start getting bolshie with them as they have shown they are not worthy of the trust that I've been giving them. My paediatrician has not even plotted Enya's weight on a chart so he probably has no idea where she is sitting on the graph. She is sending me all the graphs so I will take that to the paediatrician and see what he has to say to that (in the hospital it was not much better as I can remember one nurse hunting for the growth chart to show me- she landed up starting a new one as she couldn't find the old one!!!!)

On the positive side solids are going well, Enya ate 1/3 of the bowl last night and seemed to really enjoy it. Ciara ate 5 spoons and would have had more but I was a little uncertain how far to push her. The only downside of the solids is they have no interest in the milk afterwards. Tonight I'm going to give them half their bottle before we give the baby rice.

Operation sleep has crashed and burned with the advent of solids as Enya is waking every 4 hours overnight (during the day she can go 6 hours between feeds). She has not drunk enough over the day to counterbalance the missed bottle after eating. My options are to try the solids around midday (recommended) or increase the amount of milk she gets per feed (very difficult). I'll see how tonight goes and how the SLT appointment tomorrow goes and then decide.


Cathy said...

Scary about the weight.

Are you going to up her calories? It's really simple to do, and we had an immediate difference when we did it. He started off eating the same per feed, but getting an extra 30 cals per day - and now he eats MORE at every feed, and does 1 fewer feed per day. And still gains weight better.

I hope the appointment tomorrow goes well and is helpful.

Nix said...

We have already upped her calorie intake by concentraing the formula. If she maintains the same volume of milk she will be getting ~120kcal/kg as opposed to ~90kcal/kg that she was previously getting. That is excluding the extra calories from the solids!!! ;-)