Quick update on the babies! A lot has happened in the last week. ETA: added photos (pump output for first few days and postpartum belly 1 week out)
Both babies weaned down to high-flow nasal cannula (HFNC, a way to help airways stay open a little more than normal without "stenting" them open like CPAP does) and then Claire needed to go back to CPAP for 48 hours. Owen is now off of respiratory support (no HFNC) and Claire keeps toeing the line between being ok on HFNC and needing to go back on CPAP. The nice thing is that both are relatively non-invasive (there's a slightly bigger nasal cannula that gets used for CPAP, not a big face mask like older adults use).
Feeds have increased in volume as has my output while pumping (I've never been a slave to the pump quite like this - day 2 was the worst and I thought I would never make any more milk even though I [academically] know that this is a normal phenomenon).
Claire is getting "full" feed volumes (37 mL every 3 hours) through her orogastric (OG) tube and Owen is getting closer and closer to full feeds (he is at 16 mL every 3 hours) and has a nasogastric (NG) tube instead of an OG because he doesn't need a nasal cannula anymore.
After several days of weight loss (an expected thing, especially since both were getting IV fluids), both babies started gaining yesterday! Claire has stayed above 4 lbs and Owen has stayed above 2 lbs, and they're increasing by 0.5-1 oz per day.
For the most part, they are both "feeder-growers" at this point. I never thought we'd get to this place already. Hopefully we will have speech, PT, and OT start to weigh in on the babies' readiness for more activity, including working on skills related to nursing (!). Both babies are taking pacifiers well, which is the first step in being able to suck / swallow / breathe.
Thanks for all of the sweet words and prayers!
1 week postpartum. Missing my wiggle worms inside but happy to see them wiggle on the outside
@mdlorenz Thank you for the update! It sounds like you all are doing so well moving forward and progressing at a great pace! Good job mama, good job babies!
I'm teary reading your update. How wonderful!! The weight gain, feedings, and airway factors all seem to be falling into place. How are You doing? Taking some time for yourself (when not pumping)? Lots of good vibes coming your way.
I'm teary reading your update. How wonderful!! The weight gain, feedings, and airway factors all seem to be falling into place. How are You doing? Taking some time for yourself (when not pumping)? Lots of good vibes coming your way.
I'm pretty good considering everything. I'm getting better at sleeping in between pumping sessions and I think that makes a huge difference with mood. I had bad anxiety after DD was born and a big part of it was worrying that she wasn't getting enough milk. Ironically so far the NICU has helped prevent any bad anxiety because I know the babies are so well taken care of. I have so much to be thankful for - there are so many sick babies in our NICU and my littles are flying under the radar so far. Our village (grandparents, DH's brother, and friends) have been so key to our sanity too. Couldn't do it (as smoothly) without them.
Wow! Amazing update so happy to hear their progress and what a rockstar momma! I love that you're doing postpartum bump pics what an awesome moment in time to be able to share with your kids someday! Very inspiring.
@kayemjay2 BabyTracker. It's the least clunky I've found and I'm not going back at this point. I paid extra for the graph capability because I'm nerdy like that. Without the graphs it's free.
I'm so behind after having the cold from hell this last week - Congratulations!! The babies are beautiful! I'm so glad reading your updates that you and the babies are doing well
Both babies are off of respiratory support (and have been for most of the week). Owen was dealing with lower blood sugars but he was weaned off of sugar-containing IV fluids a few days ago. Claire had a couple of spit-up episodes that caused her to choke and drop her heart rate and O2 saturation but we've had no repeat episodes in the last 48 hours. Neo docs say that after a "brady-desat" event, they keep babies in the NICU for at least 5-7 days to watch for more. We aren't that close to going home but it is certainly a set back if she keeps having that kind of trouble.
The last two major milestones are graduating from an incubator to an open crib (they have to maintain their body temp for 24 hrs with the incubator set to 28 deg C) and taking enough by mouth (either nursing or by bottle) to grow and get the NG tubes out. Seems simple enough...
Glad to hear they are both off of respiratory support. It's so comforting when any extra tubes start to be removed. It's a reminder that they are in fact growing /developing.
@mdlorenz: Sorry to hear about the setback, but at least it sounds relatively like a "watch and see" scenario. And those 2 upcoming milestones sound achievable! You guys are doing great! <hugs>
That's great progress! Hopefully you will get over the Brady hurdle soon and the temperature and feeding close behind! Thoughts and prayers continue for you and LOs!
Thanks for the update! All the milestones no matter how big or small are great. Sorry to hear about the setbacks but at least both babies are doing well. Hope you are doing well too!
@CherryBananas I always get focused on the babies and forget about myself. It's what mamas are (unfortunately) good at.
I'm way more emotional this week (mostly thinking about the responsibility of nursing two babies and taking care of them at home eventually). I also developed a really itchy rash on my belly a week after delivery. It seemed to coincide with where the gel and monitors were placed for 3 hours every day. Strange it took that long to start bugging me. Otherwise, physically I'm feeling pretty normal? Pumping sucks (ha!) and I'm having some trouble settling on the right flange size. 24 mm leads to too much nipple rubbing and 27 mm pulls in just a tidge of areola and starts to feel pinch-y. Sigh... What I wouldn't do for these babies. At least we are moving forward with BFing - Claire latched (with the help of a nipple shield) and actually transferred a teensy bit of milk! I cried happy tears.
Thanks for the update!! So great to hear about these sweet babies progressing and I'm glad to hear that pumping (while never fun) seems to be working for you!!
Re: Claire + Owen 3.06.17
Both babies weaned down to high-flow nasal cannula (HFNC, a way to help airways stay open a little more than normal without "stenting" them open like CPAP does) and then Claire needed to go back to CPAP for 48 hours. Owen is now off of respiratory support (no HFNC) and Claire keeps toeing the line between being ok on HFNC and needing to go back on CPAP. The nice thing is that both are relatively non-invasive (there's a slightly bigger nasal cannula that gets used for CPAP, not a big face mask like older adults use).
Feeds have increased in volume as has my output while pumping (I've never been a slave to the pump quite like this - day 2 was the worst and I thought I would never make any more milk even though I [academically] know that this is a normal phenomenon).
Claire is getting "full" feed volumes (37 mL every 3 hours) through her orogastric (OG) tube and Owen is getting closer and closer to full feeds (he is at 16 mL every 3 hours) and has a nasogastric (NG) tube instead of an OG because he doesn't need a nasal cannula anymore.
After several days of weight loss (an expected thing, especially since both were getting IV fluids), both babies started gaining yesterday! Claire has stayed above 4 lbs and Owen has stayed above 2 lbs, and they're increasing by 0.5-1 oz per day.
For the most part, they are both "feeder-growers" at this point. I never thought we'd get to this place already. Hopefully we will have speech, PT, and OT start to weigh in on the babies' readiness for more activity, including working on skills related to nursing (!). Both babies are taking pacifiers well, which is the first step in being able to suck / swallow / breathe.
Thanks for all of the sweet words and prayers!
1 week postpartum. Missing my wiggle worms inside but happy to see them wiggle on the outside
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11.2011 - DS1
02.2013 - loss at 6 wks
06.2014 - DS2
10.2015 - loss at 12 wks
03.2017 - DD
Married 8/27/2011
BFP #1 9/28/2011 DS born 5/22/2012
BFP #2 4/24/2013 m/c 4/25/2013 at 4w
BFP #3 1/31/2014 DD born 10/14/2014
BFP #4 1/20/2016 m/c 2/12/2014 at 7w2d
BFP #5 8/19/2016 DS2 born 4/29/2017
BFP #6 3/7/2018 EDD 11/18/2018
*sidenote: what app is that? I had supply troubles and would love to be able to track pumping output like that!
Human sons: 11/2015 & 05/2017
*formerly kayemjay*
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Both babies are off of respiratory support (and have been for most of the week). Owen was dealing with lower blood sugars but he was weaned off of sugar-containing IV fluids a few days ago. Claire had a couple of spit-up episodes that caused her to choke and drop her heart rate and O2 saturation but we've had no repeat episodes in the last 48 hours. Neo docs say that after a "brady-desat" event, they keep babies in the NICU for at least 5-7 days to watch for more. We aren't that close to going home but it is certainly a set back if she keeps having that kind of trouble.
The last two major milestones are graduating from an incubator to an open crib (they have to maintain their body temp for 24 hrs with the incubator set to 28 deg C) and taking enough by mouth (either nursing or by bottle) to grow and get the NG tubes out. Seems simple enough...
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11.2011 - DS1
02.2013 - loss at 6 wks
06.2014 - DS2
10.2015 - loss at 12 wks
03.2017 - DD
DS2 5/17
#3 Due 9/20
I'm way more emotional this week (mostly thinking about the responsibility of nursing two babies and taking care of them at home eventually). I also developed a really itchy rash on my belly a week after delivery. It seemed to coincide with where the gel and monitors were placed for 3 hours every day. Strange it took that long to start bugging me. Otherwise, physically I'm feeling pretty normal? Pumping sucks (ha!) and I'm having some trouble settling on the right flange size. 24 mm leads to too much nipple rubbing and 27 mm pulls in just a tidge of areola and starts to feel pinch-y. Sigh... What I wouldn't do for these babies. At least we are moving forward with BFing - Claire latched (with the help of a nipple shield) and actually transferred a teensy bit of milk! I cried happy tears.
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1/7/2015 Twins born @ 34 weeks