Just wanted to post that Gracie is still NG tube free!!! She made it through a whole week without losing any weight which is a HUGE victory. The nurse I talked to from our GI doc's office on Friday was very impressed, and if you can impress these nurses, you are in great shape!! Don't get me wrong- I LOVE nurses. They have to deal with so much and they have seen it ALL. So they can be tough cookies, but also your biggest advocates and supporters.
So Ramsey and I are so happy and SO wiped out- phew! It's like Gracie has just taken off with bottle feeding, crawling all over, standing, cruising....She is able to adapt and change gears so much more quickly and easily than we are! But I am NOT complaining!!!!!!!!! Not having that rotten tube down her nose or that icky tape on her face is so amazing :) Her expressions and everything have just come to life even more- yay!
So she is drinking at least 20 oz (That's right, we count in ounces now rather than ML's!) although today she had close to 30. I am trying to slowly introduce more food to her because I am a little worried about my milk supply keeping up with her! She is not really interested in the jars of baby food. I mean, she will have a few bites but she really wants whatever I am eating. So we share soup, hummus, avocado, beans....and coconut milk ice cream ;) I bought some coconut oil and full fat coconut milk along with some canola oil in hopes of cooking with/fortifying her table food with some "good" fats. As you can imagine, all of this results in several baths a day! For both of us- ha! I have not weighed her since Friday and I am trying really hard to relax and just allow her to explore and discover eating (it's really tempting to weigh her every day which only causes stress!). I have been on my favorite website where parents of tube-fed children can chat and some other moms have responded to my questions about weaning and weight. They are SO helpful and supportive because they know first-hand how things really work when you are in the midst of this mission. Apparently, many children plateau with their weight but many don't do as well as Gracie and they end up losing a lot. So we are really in a good place so far. One seasoned tube-mom encouraged me to be patient (ie follow our instincts and don't jump to fortification) with regard to weight gain. Gracie is just learning how to feel hungry, eat and digest naturally for the first time in her life!
I think the thing that I would want other people to understand is that this is still a process and a delicate situation in spite of our wonderful progress. It is SO important for all of us to stay healthy. It is also important for Gracie to have a comfortable schedule and her lamb swing (where she usually drinks her bottles and naps so it is her "safe" place). But if there are any parents out there who are reading this and have a tube-fed child at home, I want them to know that there is a light at the end of the tunnel. I would want them to know that all of the early work you do pays off even if it seems futile at the time. We have been working with Speech and Occupational therapists several times a week since Gracie was 3 months old. We didn't just yank the tube out one day. I used to have to massage her tongue forward because she bunched it in her mouth. I used to get excited about dipping her pacifier in milk so she could know what tasting was. I mean, it's been a PROCESS. But look at how far we have come! My goal is to get Gracie to a very stable place with regard to her eating so that when she has to go in to the hospital to get her trach out, it doesn't throw her off. One tube mostly down, one to go!
So Ramsey and I are so happy and SO wiped out- phew! It's like Gracie has just taken off with bottle feeding, crawling all over, standing, cruising....She is able to adapt and change gears so much more quickly and easily than we are! But I am NOT complaining!!!!!!!!! Not having that rotten tube down her nose or that icky tape on her face is so amazing :) Her expressions and everything have just come to life even more- yay!
So she is drinking at least 20 oz (That's right, we count in ounces now rather than ML's!) although today she had close to 30. I am trying to slowly introduce more food to her because I am a little worried about my milk supply keeping up with her! She is not really interested in the jars of baby food. I mean, she will have a few bites but she really wants whatever I am eating. So we share soup, hummus, avocado, beans....and coconut milk ice cream ;) I bought some coconut oil and full fat coconut milk along with some canola oil in hopes of cooking with/fortifying her table food with some "good" fats. As you can imagine, all of this results in several baths a day! For both of us- ha! I have not weighed her since Friday and I am trying really hard to relax and just allow her to explore and discover eating (it's really tempting to weigh her every day which only causes stress!). I have been on my favorite website where parents of tube-fed children can chat and some other moms have responded to my questions about weaning and weight. They are SO helpful and supportive because they know first-hand how things really work when you are in the midst of this mission. Apparently, many children plateau with their weight but many don't do as well as Gracie and they end up losing a lot. So we are really in a good place so far. One seasoned tube-mom encouraged me to be patient (ie follow our instincts and don't jump to fortification) with regard to weight gain. Gracie is just learning how to feel hungry, eat and digest naturally for the first time in her life!
I think the thing that I would want other people to understand is that this is still a process and a delicate situation in spite of our wonderful progress. It is SO important for all of us to stay healthy. It is also important for Gracie to have a comfortable schedule and her lamb swing (where she usually drinks her bottles and naps so it is her "safe" place). But if there are any parents out there who are reading this and have a tube-fed child at home, I want them to know that there is a light at the end of the tunnel. I would want them to know that all of the early work you do pays off even if it seems futile at the time. We have been working with Speech and Occupational therapists several times a week since Gracie was 3 months old. We didn't just yank the tube out one day. I used to have to massage her tongue forward because she bunched it in her mouth. I used to get excited about dipping her pacifier in milk so she could know what tasting was. I mean, it's been a PROCESS. But look at how far we have come! My goal is to get Gracie to a very stable place with regard to her eating so that when she has to go in to the hospital to get her trach out, it doesn't throw her off. One tube mostly down, one to go!