It has come- the dreaded cold/flu/RSV season. Parents everywhere dread this time of year, I imagine, but if you have a child with a trach then you can't be too careful. All of these seasonal ailments are airborne, and Gracie has a hole in her neck that bypasses the body's natural ways of keeping many particles and germs from entering the lungs. I actually heard from some parents whose child only has an NG tube that they must be equally as careful. One fever can put a baby off of their bottle and every ounce counts when you are weaning. So, sorry family and friends, but no house guests for us for a while! And if you come over to visit, you will encounter a crazy woman at the door who will douse you with hand sanitizer and ask you to take off your shoes. It's nothing personal, but I am NOT going back into the hospital with Gracie Jane unless it's time to get her trach out.
The fact that everything is going very well around here only makes my resolve to stay healthy stronger. I am so happy to tell you that Miss Gracie has been drinking the better part of 110 cc's per feed!!! I mean, it's miraculous! It's a combination of her jaw growth, slowly turning down her night feeds and increasing her daytime bolus feeds, and taking the milk-based formula (to fortify) out of the breast milk. My next goal is to turn down the night feeds yet again slowly get her to five day time feeds. "Normal" babies drink around 5 six ounce bottles per day, I hear, as well as eat some baby food (which she does,a little) and crackers etc. If we keep going at this rate, it might just be possible to get her off of the NG tube by Christmas (my own personal goal)! But there have been so many ups and downs just in the past few weeks, I don't want to get attached to any certain time line. Gracie might be ready to lose the tube sooner for all I know!
So Gracie is still hanging out at 14 lbs. It's great that she is not losing weight, especially because she is SO active! She is already pulling up to standing and crawling all over the place! We have officially relinquished the dining room to Her Royal Cuteness and have baby-gated it into a playroom. But I digress... we still want her caloric intake to keep up with her, so we are going to try a soy-based formula to fortify my milk. I am not terribly excited about yet another trial-and-error situation, but I am much more comfortable with this soy idea vs. the nasty sounding (and corn-based) fortifying concoctions out there. I am 100% positive that this growth curve chart causes more anxiety in doctors than it does in parents. They seem ever so attached to it. And I get it, but the second that common sense takes a back seat to a chart, I will continue to question. Keep rockin' it out Gracie!!
The fact that everything is going very well around here only makes my resolve to stay healthy stronger. I am so happy to tell you that Miss Gracie has been drinking the better part of 110 cc's per feed!!! I mean, it's miraculous! It's a combination of her jaw growth, slowly turning down her night feeds and increasing her daytime bolus feeds, and taking the milk-based formula (to fortify) out of the breast milk. My next goal is to turn down the night feeds yet again slowly get her to five day time feeds. "Normal" babies drink around 5 six ounce bottles per day, I hear, as well as eat some baby food (which she does,a little) and crackers etc. If we keep going at this rate, it might just be possible to get her off of the NG tube by Christmas (my own personal goal)! But there have been so many ups and downs just in the past few weeks, I don't want to get attached to any certain time line. Gracie might be ready to lose the tube sooner for all I know!
So Gracie is still hanging out at 14 lbs. It's great that she is not losing weight, especially because she is SO active! She is already pulling up to standing and crawling all over the place! We have officially relinquished the dining room to Her Royal Cuteness and have baby-gated it into a playroom. But I digress... we still want her caloric intake to keep up with her, so we are going to try a soy-based formula to fortify my milk. I am not terribly excited about yet another trial-and-error situation, but I am much more comfortable with this soy idea vs. the nasty sounding (and corn-based) fortifying concoctions out there. I am 100% positive that this growth curve chart causes more anxiety in doctors than it does in parents. They seem ever so attached to it. And I get it, but the second that common sense takes a back seat to a chart, I will continue to question. Keep rockin' it out Gracie!!