So we have been back to our pediatric cardiologist for a follow up. Not such a great visit- no impending open heart surgery but he talked a lot more about it and how great the heart team we would use is. Which of course left me gloomy and worried. I’m wondering about giving up trying to nurse- he said that there was no need but he also said her weight dropped off a bit- and I know the main change in the last few weeks is trying to get her to nurse and it tires her out and she ends up eating less. Although- when I plotted her weight and height it didn’t look to me like it had dropped at all. I work with a pediatrician and I showed her my handy charting work and she thought it looked accurate as well- that being the case her weight has not dropped.
I need to stew over yesterday’s visit some more I don’t want to get all alarmist about it- he said essentially things are the same- but he was just more guarded about her future and described the septum wall hole as bigger then he has in the past and said he was surprised she hasn’t needed surgery already. So I was a bit taken aback. I guess we have probably always been in limboland over this- but since she doesn’t have active symptoms we can easily see; I don’t often think of it and am more focused on how great she is doing. This is just the most time he has spent talking about surgery. Before he always said we were a long way off from worrying about it and my overactive mind heard the start of him mentally preparing us for surgery. I hope it is just my overactive imagination but I tend to be right about these things which doesn’t help my paranoia.
I just hate, hate, hate the thought that something I might be doing is contributing to a compromise in her health. He said nursing was fine and he would tell me if it wasn’t but he also said there was a drop in weight gain- which is what could lead to surgery. Maybe he knows it is inevitable and thats why he said what he said. He was very kind about it- he outright said that trying to teach a baby to nurse that doesn’t want to is stressful enough and I shouldn’t add to that by thinking guilty thoughts that it is harming her- but I can’t help myself. The nursing is to strengthen her oral-motor muscles- so she will not have as hard a time with solid foods and will have better speech clarity. Both of which are areas that are typical to be delayed in kiddos with Ds. Of course heart surgery is a typical outcome for a child with Ds as well- it’s all just so gray- there isn’t any clear right or wrong right now- which is my fear that in hindsight I’m going to be left wondering if I should have made the other choice. If she has heart surgery I’ll feel guilty that I should have let her have an easier time of drinking her milk from the bottle. If she doesn’t have heart surgery then I’ll wish I had been more tenacious with teaching her to nurse. I can’t know the future now so it just leaves me in bits and pieces over what to do for her. I think we are usually blessed to not have to face the enormity of the consequences of our actions on our children’s futures on a daily basis. It’s just so hard when we do have to face it; well maybe not head on, but from a spot in the mist where the road ahead is less clear.