Today marks another day of frustration. It was the start of the overwhelming set of appointments we have for Ben this week.
Ben's weight gain was non existent. Dr.Cogswell however did not seem concerned. While his weight is identical to what it was last Tuesday he has put on over a centimeter in length. The doctor reassured me all of his other growth measurements are fantastic...he just isn't putting on weight.
I am not sure there are words to express my frustration adequately. I honestly am not sure what more can do. I have increased the amount offered to Ben at every feed ( even if he doesn't take it) and I am making sure his feeds aren't spaced out too far. I wish I knew what to do.
Ben's weight gain was non existent. Dr.Cogswell however did not seem concerned. While his weight is identical to what it was last Tuesday he has put on over a centimeter in length. The doctor reassured me all of his other growth measurements are fantastic...he just isn't putting on weight.
I am not sure there are words to express my frustration adequately. I honestly am not sure what more can do. I have increased the amount offered to Ben at every feed ( even if he doesn't take it) and I am making sure his feeds aren't spaced out too far. I wish I knew what to do.
Dr. Cogswell seems to agree with his local pediatrician that he is doing well in all other aspects other than the weight gain and perhaps a special prescription for a human milk fortifier may help to increase the calorie content enough for him to thrive and gain the much needed weight. We will be seeing his pediatrician, Dr. Hilliard, tomorrow to discuss this option.
On the plus side Dr.Cogswell felt Ben's airway management was much better and that he was very content and not as distressed as his last visit. His lungs were clear and he was able to have his second RSV injection today (right on schedule!) which was a huge relief.
Thursday we have the outpatient cleft palate team appointments. We will be seeing several doctors, surgeons and specialists along with the feeding team, and finished off with an appointment with the geneticist.
To be honest the whole situation is getting overwhelming and makes me feel more than a bit sick. The situation lends itself to making one feel like a bad parent even though no one has come right out and said that. I know it seems bad now but I can't imagine how bad it would be should he require readmission and an NG tube or worse. I know Ben will be having surgery within this next year or so and I don't know how I will mentally cope with that. I just hope this whole medical situation resolves itself sooner rather than later before Ben is old enough to remember any of it.
He is a VERY strong little boy....I honestly wish I was as strong.
1 comment:
Think positive and stay strong bud. Ben is a fighter and he will get thru this. We r all praying for the little guy
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