This little one has been keeping her formula down for about 3 weeks now, yay!
Bad news is that as of today, her G.I. specialist says that she is severely under weight. Now when you look at Dahlia, she does not look underweight, let alone, severely underweight, but whatever, he's the expert.
He says she needs to gain weight, (and I agree), or we will have 3 options.
1) Continuous overnight drip feeding. This means she would be hooked up to her feeding pump all night long for at least 8 hours. She would be getting an average of about a tablespoon of formula every 10 minutes. But this way the formula would go in slowly and she'd be more likely to tolerate it.
2) Another upper G.I. study. She already had one of these done so I don't see the point of another one.
3) Fundoplication. Surgery. For an explanation of what this is, click on the word. I told him this is LAST resort but we are still far away from this option.
So for now we are going to try again and slowly thicken up her formula so that she gets more calories.
Funny thing about this little monkey. See, when she was on ECMO (life support) they were going to give her a max of 14 days for her to improve before they try something drastic. On her 7th day, they told us that we only had about a week left to see if she got any better before trying surgery without the pressure in her chest going down. The very next day, as if she over heard our conversation, pressure started to drop and next thing you knew, pressure was low enough for her to be taken off of ECMO and have her surgery.
About 2 weeks later when they told us that things didn't look good and if she didn't get better, they again, might have to look at "other options". Other options meant taking her off of the ventilators and it was basically do or die (literally). Again, as if she has been listening, the very next day they started to lower support from the ventilators and eventually she was breathing on her own.
Dahlia always eats like a picky little bird. She eats very very little by mouth.
Today once we got home from the G.I. dr's appt., at my moms house she ate soup (arroz gisado, not sure how to spell that), cottage cheese, 1/2 a cracker, 1/2 a cookie, cheese and milk!
Again, just like tradition, she has been presented with options and then surprised the heck out of us. I hope and pray that she continues to eat like this. If she does, then before you know it we can hopefully get rip of that gtube!
So as I type this out, Dahlia is having her 1st feeding with the higher calorie formula. Lets hope she can keep this down so that she can put some more weight on that little body.
Dahlia is 14 months and 18.4 lbs.
Monday, April 23, 2012
Monday, April 16, 2012
Bad news, not about Dahlia... sort of
Our wonderful, beloved, incredible, loving, caring, most wonderful Dr. Muenchow has decided to close her practice. :(
Dr. Muenchow has saved and fixed my baby. I was hoping that we'd have her FOREVER. I always knew that she would retire someday but it was just so sudden. This woman works non-stop. She used to come see Dahlia late late in the day many times while she was in the hospital and then have surgery 1st thing in the morning. I am happy for her to get time all to herself to rest and do what she needs to do to take care of herself. Shes taken care of so many people for so long, she really needs to put herself first now. I love her to death and she will always hold a very very special place in my heart.
Again, I am really happy for her that she is finally putting herself first. But for selfish reasons, I am devastated. I know there are other really great surgeons out there but no one knows Dahlia inside and out like Dr. Muenchow. :(
We've been referred to another great pediatric surgeon but it will never be Dr. Muenchow.
Aside from this crummy news, Dahlia is doing great. She had been spitting up a lot of her meals for a little over a month. We went and saw a G.I specialist and he prescribed a couple of medications that didn't work. After trying out different feeding schedules and amounts, we finally found one that works. She has not spit up (knock on wood) in over a week now. Yay!
Today she had her (a little delayed) 12 months NICU follow up. We were told that developmentally, she is doing FANTASTIC. She is doing everything she should be. Shes walking, babbling and is right on track.
We have been referred to a team, that's right, a team for feeding therapy. All of her meals are still through her gtube. She is also little for her age. Something like in the 1% of toddlers her age. So they want her to see a nutritionist to make sure she is getting the caloric intake she needs and then feeding therapist to show/teach her how to eat.
OK, so that's where we are for now. More to come......
Dr. Muenchow has saved and fixed my baby. I was hoping that we'd have her FOREVER. I always knew that she would retire someday but it was just so sudden. This woman works non-stop. She used to come see Dahlia late late in the day many times while she was in the hospital and then have surgery 1st thing in the morning. I am happy for her to get time all to herself to rest and do what she needs to do to take care of herself. Shes taken care of so many people for so long, she really needs to put herself first now. I love her to death and she will always hold a very very special place in my heart.
Again, I am really happy for her that she is finally putting herself first. But for selfish reasons, I am devastated. I know there are other really great surgeons out there but no one knows Dahlia inside and out like Dr. Muenchow. :(
We've been referred to another great pediatric surgeon but it will never be Dr. Muenchow.
Aside from this crummy news, Dahlia is doing great. She had been spitting up a lot of her meals for a little over a month. We went and saw a G.I specialist and he prescribed a couple of medications that didn't work. After trying out different feeding schedules and amounts, we finally found one that works. She has not spit up (knock on wood) in over a week now. Yay!
Today she had her (a little delayed) 12 months NICU follow up. We were told that developmentally, she is doing FANTASTIC. She is doing everything she should be. Shes walking, babbling and is right on track.
We have been referred to a team, that's right, a team for feeding therapy. All of her meals are still through her gtube. She is also little for her age. Something like in the 1% of toddlers her age. So they want her to see a nutritionist to make sure she is getting the caloric intake she needs and then feeding therapist to show/teach her how to eat.
OK, so that's where we are for now. More to come......
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