Hi everyone! (Update)
Oct 12, 2015 21:55:40 GMT -5
Post by trixi282 on Oct 12, 2015 21:55:40 GMT -5
Ok, well I just had a big post written out and the internet ate it... 
My 2nd attempt before I fall asleep on my keyboard! 
So I've been lurking as much as I can while I pump or at work, but don't often reply and I'm sorry for that. I do miss being around here.... I posted on the eye exam thread and jessila asked for an update, so here it goes!
I don't think I've really done an update since the day we brought E home from the NICU at just 2 days shy of 12 weeks old. It was wonderful to bring her home, but immediately our world got insanely busy. Since her discharge we've had plenty of follow up appointments and life in general getting in the way. After having a g-tube placed we went home still offering the bottle 2x a day, but she was so disinterested at the time, and it seemed coming home made that worse. She slowly regressed and stopped taking the bottle all around. She also stopped taking the pacifier, and now only prefers her hands, while occasionally sucking/chewing on our fingers too.
When calling for her Occupational and Speech therapy, we were told we couldn't be seen until October, and that they didn't have openings for a swallow study until the end of October; 2 months after her NICU discharge! I feel like the first two weeks she was home i was on the phone with various doctors and specialists non-stop setting up appointment, rescheduling appointments, hunting down people to try and squeeze in appointments... and then spending time taking her to appointments... We finally got an evaluation moved up and then an in-house referral for therapy, which started September 22nd. Then we were thankfully able to be squeezed in for a swallow study a few days after that, but unfortunately that was pretty much inconclusive. You can't perform a swallow study if the participant won't swallow anything. She wouldn't take the bottle and wouldn't take any liquid in her mouth. When I tried she freaked out and aspirated. So we're continuing with Occupational Therapy right now in the hopes to get her to take a bottle again so we can at least get to the point of her taking a few ml's so we can repeat the study and get an idea of if it's only oral aversion or if she really does have other swallow coordination or aspiration issues.
As noted in the eye exam thread (here) she was diagnosed with Horner Syndrome, which we are fairly certain is from all of her surgeries and being on ECMO. Although we'll never know 100% what the cause was. She had to be 100% sedated for the MRI and MRA to determine that, and when they did that they also did a CT scan for her Hematology/Oncology follow up, and the CT scan came back normal as well, which was great to hear. Unfortunately that fun ended up keeping us over night at the hospital, simply following protocol - which made for a super exciting birthday (mine) spent in the Peds Med/Surg inpatient floor.
Aside from that life has been busy all around, with Emme going to therapy 2x a week, plus other appointments she has anywhere from 2-5 appointments a week since we've been home. I'm back to work, in the office, but did cut my hours back some so I have Fridays off to take her to her many follow-up appointments.
She is going to daycare, same center as big sis, T/W/Th and they have been great about her g-tube feedings. We were able to bring someone in from our supply company to do a training for the staff, and I'm so grateful that they were willing to take her even with the g-tube. It's not hard, or that much more time consuming than feeding any other baby. It's just different and can be intimidating.
She's thriving, with the exception of oral feeding, and is really a happy baby. She's still gaining weight and growing right on her curve, and has just today started showing a little progress with therapy... Things are starting to settle in and we're getting into a groove.
I'll try to be on and be more active again now that work is starting to level out too. I went back and immediately had deadlines to work on - so I've been reading while documents save or print... but again don't post much - I'll try to change that.
My 2nd attempt before I fall asleep on my keyboard! 
So I've been lurking as much as I can while I pump or at work, but don't often reply and I'm sorry for that. I do miss being around here.... I posted on the eye exam thread and jessila asked for an update, so here it goes!
I don't think I've really done an update since the day we brought E home from the NICU at just 2 days shy of 12 weeks old. It was wonderful to bring her home, but immediately our world got insanely busy. Since her discharge we've had plenty of follow up appointments and life in general getting in the way. After having a g-tube placed we went home still offering the bottle 2x a day, but she was so disinterested at the time, and it seemed coming home made that worse. She slowly regressed and stopped taking the bottle all around. She also stopped taking the pacifier, and now only prefers her hands, while occasionally sucking/chewing on our fingers too.
When calling for her Occupational and Speech therapy, we were told we couldn't be seen until October, and that they didn't have openings for a swallow study until the end of October; 2 months after her NICU discharge! I feel like the first two weeks she was home i was on the phone with various doctors and specialists non-stop setting up appointment, rescheduling appointments, hunting down people to try and squeeze in appointments... and then spending time taking her to appointments... We finally got an evaluation moved up and then an in-house referral for therapy, which started September 22nd. Then we were thankfully able to be squeezed in for a swallow study a few days after that, but unfortunately that was pretty much inconclusive. You can't perform a swallow study if the participant won't swallow anything. She wouldn't take the bottle and wouldn't take any liquid in her mouth. When I tried she freaked out and aspirated. So we're continuing with Occupational Therapy right now in the hopes to get her to take a bottle again so we can at least get to the point of her taking a few ml's so we can repeat the study and get an idea of if it's only oral aversion or if she really does have other swallow coordination or aspiration issues.
As noted in the eye exam thread (here) she was diagnosed with Horner Syndrome, which we are fairly certain is from all of her surgeries and being on ECMO. Although we'll never know 100% what the cause was. She had to be 100% sedated for the MRI and MRA to determine that, and when they did that they also did a CT scan for her Hematology/Oncology follow up, and the CT scan came back normal as well, which was great to hear. Unfortunately that fun ended up keeping us over night at the hospital, simply following protocol - which made for a super exciting birthday (mine) spent in the Peds Med/Surg inpatient floor.
Aside from that life has been busy all around, with Emme going to therapy 2x a week, plus other appointments she has anywhere from 2-5 appointments a week since we've been home. I'm back to work, in the office, but did cut my hours back some so I have Fridays off to take her to her many follow-up appointments.
She is going to daycare, same center as big sis, T/W/Th and they have been great about her g-tube feedings. We were able to bring someone in from our supply company to do a training for the staff, and I'm so grateful that they were willing to take her even with the g-tube. It's not hard, or that much more time consuming than feeding any other baby. It's just different and can be intimidating.
She's thriving, with the exception of oral feeding, and is really a happy baby. She's still gaining weight and growing right on her curve, and has just today started showing a little progress with therapy... Things are starting to settle in and we're getting into a groove.
I'll try to be on and be more active again now that work is starting to level out too. I went back and immediately had deadlines to work on - so I've been reading while documents save or print... but again don't post much - I'll try to change that.
I can't imagine balancing all of those appointments in addition to working and life in general. 
