Baby Update (Nugget aka Emmeline)
Jun 24, 2015 21:51:19 GMT -5
Post by trixi282 on Jun 24, 2015 21:51:19 GMT -5
Hi ladies, I apologize for being a bit MIA lately. I've been on here and there via Tapatalk and love titing here and there, but to write a full post after all this time with so many updates would take me more than a pumping session with one hand, haha! TL;DR at the end.
So I'll try to summarize the last 2 weeks, because things have been kind of hectic in my life overall... Not sure if I shared this or not, but while I was on bed rest we bought a house - we were under contract when I ruptured and my husband got it ready for us to move into (painted bedrooms, etc.) and then moved our stuff in before E was born. He had unpacked some, mostly necessities since he and J were still living with his parents. When I got discharged there was a ton to do - and still is honestly, because I've only unpacked about 2 boxes total!
So anyway, 2 weeks ago I got to hold her, because she had been off ECMO for awhile and had sort of settled in to being on the respirator after having been on the oscillator for breathing and also graduating from that. She's been doing great while they slowly wean her from sedation and pain medication. While they did that they were also adjusting her respirator pressure settings. They started at 48 and were weaned down to 20 over the course of a week or so. After they were steady at 20 for about 2 days, they decided on Thursday last week that it was time to extubate her and put her on CPAP for breathing!
After 3 weeks 2 days of life I finally got to hear my baby.... well wheeze. Haha. It was so sad and joyful at the same time. She was crying, but there was no real sound. She's been intubated and on sedation and pain meds since the first hour she was born, so she's never really been given the chance to even try to cry until last week.
Tuesday she was 4 weeks old, and she's finally starting to find her voice. Her CPAP settings are now also being adjusted and they are taking the pressure settings down a notch each day. With the CPAP it is only nose cannulas that has continuous forced oxygen that helps keep the airway open and forces air into the lungs. She is doing the rhythmic breathing on her own now though, even though it isn't always steady. She's getting the hang of it though. They've continued reducing and dropping her meds, she's down now to only 1 medication with a new one added to help relieve the withdrawal symptoms, and is getting pain meds on an as needed basis, which is based on her signals/signs of discomfort.
She also started occupational therapy this weekend - mostly for two reasons. 1. to loosen her muscles and get her moving more, since she was sedated for so long immediately after birth and kept in a single position for long periods of time, and 2. to help her learn to suck/eat orally. She's been on either IV nutrition or a feeding tube this whole time. So she's never really had to learn to suck or swallow. With the CPAP she has a lot of saliva and ends up blowing bubbles! So we're hoping the OT will help her learn to swallow better (Even with the feeding tube).
They won't 'allow' her to bottle (or breast) feed until she's off CPAP which could be another week or more depending on her. But she's starting to suck a little bit with the OT now - they have also started giving her a pacifier for a minute or two at a time a few times a day which is helping some.
Sorry for the novella... I just wanted to update you all. I've been checking in and following, just not commenting as much as I used to, it's hard to do while snacking and pumping at the same time, haha!
TL;DR:
E has been extubated and is on CPAP and doing well with that change of respiration. She's still slowly weaning from meds and has dropped a few already. Still has a feeding tube, but is getting OT to help with sucking motion so when CPAP is removed she can learn to bottle (or breast) feed.
Oh - I also get to hold her almost daily now too, which is the best part of my day, every day. Aside from my toddlers silly comments, hugs and kisses!
So I'll try to summarize the last 2 weeks, because things have been kind of hectic in my life overall... Not sure if I shared this or not, but while I was on bed rest we bought a house - we were under contract when I ruptured and my husband got it ready for us to move into (painted bedrooms, etc.) and then moved our stuff in before E was born. He had unpacked some, mostly necessities since he and J were still living with his parents. When I got discharged there was a ton to do - and still is honestly, because I've only unpacked about 2 boxes total!
So anyway, 2 weeks ago I got to hold her, because she had been off ECMO for awhile and had sort of settled in to being on the respirator after having been on the oscillator for breathing and also graduating from that. She's been doing great while they slowly wean her from sedation and pain medication. While they did that they were also adjusting her respirator pressure settings. They started at 48 and were weaned down to 20 over the course of a week or so. After they were steady at 20 for about 2 days, they decided on Thursday last week that it was time to extubate her and put her on CPAP for breathing!
After 3 weeks 2 days of life I finally got to hear my baby.... well wheeze. Haha. It was so sad and joyful at the same time. She was crying, but there was no real sound. She's been intubated and on sedation and pain meds since the first hour she was born, so she's never really been given the chance to even try to cry until last week.
Tuesday she was 4 weeks old, and she's finally starting to find her voice. Her CPAP settings are now also being adjusted and they are taking the pressure settings down a notch each day. With the CPAP it is only nose cannulas that has continuous forced oxygen that helps keep the airway open and forces air into the lungs. She is doing the rhythmic breathing on her own now though, even though it isn't always steady. She's getting the hang of it though. They've continued reducing and dropping her meds, she's down now to only 1 medication with a new one added to help relieve the withdrawal symptoms, and is getting pain meds on an as needed basis, which is based on her signals/signs of discomfort.
She also started occupational therapy this weekend - mostly for two reasons. 1. to loosen her muscles and get her moving more, since she was sedated for so long immediately after birth and kept in a single position for long periods of time, and 2. to help her learn to suck/eat orally. She's been on either IV nutrition or a feeding tube this whole time. So she's never really had to learn to suck or swallow. With the CPAP she has a lot of saliva and ends up blowing bubbles! So we're hoping the OT will help her learn to swallow better (Even with the feeding tube).
They won't 'allow' her to bottle (or breast) feed until she's off CPAP which could be another week or more depending on her. But she's starting to suck a little bit with the OT now - they have also started giving her a pacifier for a minute or two at a time a few times a day which is helping some.
Sorry for the novella... I just wanted to update you all. I've been checking in and following, just not commenting as much as I used to, it's hard to do while snacking and pumping at the same time, haha!
TL;DR:
E has been extubated and is on CPAP and doing well with that change of respiration. She's still slowly weaning from meds and has dropped a few already. Still has a feeding tube, but is getting OT to help with sucking motion so when CPAP is removed she can learn to bottle (or breast) feed.
Oh - I also get to hold her almost daily now too, which is the best part of my day, every day. Aside from my toddlers silly comments, hugs and kisses!
