@guy64000000 Wow 51 days, including an infection… impressive! Glad to hear he’s growing well 
@kimhimmel Currently have a 33+0 baby girl in the NICU.
- She was born at 29+1 at 920 grams 2 lbs 1 oz.
- I also had (severe) preeclampsia w/ severe IUGR and delivered her via c-section within less that 48 hours of the preeclampsia onset. Was able to get two steroid doses in that time.
- She was on c-pap from DOL 0-19, nasal canulla from DOL 19-25 and went off oxygen completely this week at DOL 25. She is now 2 days off oxygen and doing well, fingers crossed. However, it is extremely common for them to go on and off it I was told.
- My daughter was eager with her pacifier very early in, even at about 30 weeks. We started non nutritive at 32 weeks and breast/bottle at 33+6. She took to the bottle quickly but I did notice it would take her 3 good winds to complete her feeds. I say this because I found that some (not all) nurses/speech therapists were quick to want to move in to the tube if she didn't latch immediately. I pushed back on them a bit saying that sometimes she needs a minute and i wasn't ready to give up on her. The feeding really expedited our stay and I wonder what would have happened if I didn't push back on them a bit. Advocate for your babies, you know them best.
- We were very lucky to have had very few set backs besides some low temps at the very end that the doctors wanted to keep tabs on.
- We were discharged at exactly 36 weeks, this is a lot sooner than we had imagined especially since our daughter was a 29 weeker but her good eating really expedited her stay.
- We only go home yesterday so no update here.
renderingtruth
New member
@kimhimmel 1) Identical twin girls- gestational age 33 w 6 d
Baby a- 4 lbs 6 oz
Baby b- 3 lbs 13 oz
My girls are 7 weeks now
2) preclampsia got me! Received mag drip 2x once before birth and once after, also received a blood transfusion after their birth due to being anemic.
3) they were very quickly off of respiratory support and continue to do well with their breathing!
4) Feeding continues to be the biggest hurdle for us, my girls are healthy otherwise! We are actually in the process of transferring to a baby rehab for feeding support, never knew there was such a thing!!
5) Baby A started to get “bottle aversion” and was shutting down during feedings. This is apparently common in preemies. She had a 72 hour reset and is doing much better with her feedings.
6) Still waiting on them to come home…
7) TBD
Baby a- 4 lbs 6 oz
Baby b- 3 lbs 13 oz
My girls are 7 weeks now
2) preclampsia got me! Received mag drip 2x once before birth and once after, also received a blood transfusion after their birth due to being anemic.
3) they were very quickly off of respiratory support and continue to do well with their breathing!
4) Feeding continues to be the biggest hurdle for us, my girls are healthy otherwise! We are actually in the process of transferring to a baby rehab for feeding support, never knew there was such a thing!!
5) Baby A started to get “bottle aversion” and was shutting down during feedings. This is apparently common in preemies. She had a 72 hour reset and is doing much better with her feedings.
6) Still waiting on them to come home…
7) TBD
@kimhimmel (currently still in NICU, so will update some answers)
1. 978g (2lb 2oz), 29+1 weeks, single
2. PPROM at 27wks, spontaneous labour, emergency c-section. Received steroid shots 2 weeks prior, and magnesium whilst in labour. Preterm perhaps because baby is IUGR, or placenta insufficiency or bicornuate uterus (!)
3. In days: Ventilator (5), CPAP (6), Air (8), lowflow (4), high flow (1), CPAP (7), lowflow (6), Air (1), lowflow (2), CPAP (2), high-low (7), lowflow (5), air(1), lowflow (1), CPAP (3), lowflow (2 and counting..!)
4. Orally via NG tube whilst trying to establish breastfeeding
5. Going in circles with different respiratory support, having septic screenings when LO having an off day with desats and elevated respiratory rates. Not had an infection yet to date. It's delayed being able to concentrate fully on feeding.
6. TBC (We are on 62 days so far ..)
7. Any ongoing issues since coming home related to their prematurity, and how you've been managing those - TBC
8. Anything else you'd like to share! - TBC
1. 978g (2lb 2oz), 29+1 weeks, single
2. PPROM at 27wks, spontaneous labour, emergency c-section. Received steroid shots 2 weeks prior, and magnesium whilst in labour. Preterm perhaps because baby is IUGR, or placenta insufficiency or bicornuate uterus (!)
3. In days: Ventilator (5), CPAP (6), Air (8), lowflow (4), high flow (1), CPAP (7), lowflow (6), Air (1), lowflow (2), CPAP (2), high-low (7), lowflow (5), air(1), lowflow (1), CPAP (3), lowflow (2 and counting..!)
4. Orally via NG tube whilst trying to establish breastfeeding
5. Going in circles with different respiratory support, having septic screenings when LO having an off day with desats and elevated respiratory rates. Not had an infection yet to date. It's delayed being able to concentrate fully on feeding.
6. TBC (We are on 62 days so far ..)
7. Any ongoing issues since coming home related to their prematurity, and how you've been managing those - TBC
8. Anything else you'd like to share! - TBC
@sableng99 Wow what a journey you’ve been on and how frustrating with the back and forth with respiratory stuff. I hope you get to go home soon and look forward to your updates!
@sableng99 Checking in… how’s your little one doing?
almondy7995
New member
@kimhimmel 28w1d, 900g, single
Pre-eclampsia. I started getting elevated pressures at 22-24weeks. At 24wks I consulted with an MFM and was placed on meds and told to take my BP twice daily. Meds worked initially. 27w4d I was getting really alarming readings and so I called the office and they sent me to L&D. I was admitted and given emergency meds to bring down my BP and I spent the night on mag, got steroids, constant monitoring. My bloodwork confirmed I had preeclampsia with severe features and then a growth scan showed IUGR in baby’s belly. They told me I was admitted til I delivered. Their goal was 34 weeks. I made it just one night in antepartum. Next afternoon we had a suspected decel during our daily NST. We were sent back to L&D and put back on mag. I had gotten 2 steroid shots total. That night, I woke up in the middle of the night surrounded by nurses frantically looking for baby’s heartbeat. Doctor came through said we were going for an emergency c-section and like 50 people came. So lucky they found baby’s heartbeat as we crossed the threshold into the OR and I got a spinal tap instead of general anesthesia. I never saw baby girl she was taken to NICU immediately and my husband followed.
She was intubated the first 14 hours of life and then moved to CPAP. She made expected progress on CPAP and came off at 32 weeks and moved to high flow. She worked her way down but got stuck on 3L for quite some time which delayed bottle feeding a bit. We did 3 room air trials and finally got on Diuril and we were able to get off all oxygen at 40w1d. It was our final milestone and we were discharged 5 days after that at 40w6d.
Feeding was the most anxiety inducing component of our stay. We went NPO 3 separate times for distended belly/infection scares and each time we had to build back up from 2ml feeds. It took us 6 weeks for her to tolerate full feeds and be done with TPN. We also had to switch from breast milk to formula at around 36 weeks GA because I had an extremely low supply but that transition thankfully went off without a hitch.
She took to bottle feeding extremely well I think because we were forced to wait til 36 weeks GA because of her oxygen requirements. She was eager once we were allowed to start. She got to 100% bottle feeds in around 10 days after the first bottle. This was our biggest NICU success because most other milestones were sloooowww coming for us.
We had no major complications for which I am eternally grateful!!! Just three precautionary infection rule outs that lasted about 48 hours each.
We were discharged after 90 days. Our discharge checklist was: eat 100% by mouth, be off oxygen, car seat test, no brady episodes, demonstrate we knew how to administer her vitamins and we had to show we purchased them, show we could administer her meds and complete a CPR training. Also she was given a brain MRI (standard for her GA) and hearing test right before discharge.
We were scheduled to follow up with cardiology, pulmonology and ophthalmology. We have been cleared by all. I scheduled an evaluation with my state’s early intervention program like 2 weeks after we got home and we qualified for PT. They evaluated her based on the milestones for her actual age so she easily qualified. We do PT 1x a week and she is 100 percent on track for fine and gross motor skills. We will do a follow evaluation this summer to assess her speech progress though so far she is on track for her adjusted age.
Pre-eclampsia. I started getting elevated pressures at 22-24weeks. At 24wks I consulted with an MFM and was placed on meds and told to take my BP twice daily. Meds worked initially. 27w4d I was getting really alarming readings and so I called the office and they sent me to L&D. I was admitted and given emergency meds to bring down my BP and I spent the night on mag, got steroids, constant monitoring. My bloodwork confirmed I had preeclampsia with severe features and then a growth scan showed IUGR in baby’s belly. They told me I was admitted til I delivered. Their goal was 34 weeks. I made it just one night in antepartum. Next afternoon we had a suspected decel during our daily NST. We were sent back to L&D and put back on mag. I had gotten 2 steroid shots total. That night, I woke up in the middle of the night surrounded by nurses frantically looking for baby’s heartbeat. Doctor came through said we were going for an emergency c-section and like 50 people came. So lucky they found baby’s heartbeat as we crossed the threshold into the OR and I got a spinal tap instead of general anesthesia. I never saw baby girl she was taken to NICU immediately and my husband followed.
She was intubated the first 14 hours of life and then moved to CPAP. She made expected progress on CPAP and came off at 32 weeks and moved to high flow. She worked her way down but got stuck on 3L for quite some time which delayed bottle feeding a bit. We did 3 room air trials and finally got on Diuril and we were able to get off all oxygen at 40w1d. It was our final milestone and we were discharged 5 days after that at 40w6d.
Feeding was the most anxiety inducing component of our stay. We went NPO 3 separate times for distended belly/infection scares and each time we had to build back up from 2ml feeds. It took us 6 weeks for her to tolerate full feeds and be done with TPN. We also had to switch from breast milk to formula at around 36 weeks GA because I had an extremely low supply but that transition thankfully went off without a hitch.
She took to bottle feeding extremely well I think because we were forced to wait til 36 weeks GA because of her oxygen requirements. She was eager once we were allowed to start. She got to 100% bottle feeds in around 10 days after the first bottle. This was our biggest NICU success because most other milestones were sloooowww coming for us.
We had no major complications for which I am eternally grateful!!! Just three precautionary infection rule outs that lasted about 48 hours each.
We were discharged after 90 days. Our discharge checklist was: eat 100% by mouth, be off oxygen, car seat test, no brady episodes, demonstrate we knew how to administer her vitamins and we had to show we purchased them, show we could administer her meds and complete a CPR training. Also she was given a brain MRI (standard for her GA) and hearing test right before discharge.
We were scheduled to follow up with cardiology, pulmonology and ophthalmology. We have been cleared by all. I scheduled an evaluation with my state’s early intervention program like 2 weeks after we got home and we qualified for PT. They evaluated her based on the milestones for her actual age so she easily qualified. We do PT 1x a week and she is 100 percent on track for fine and gross motor skills. We will do a follow evaluation this summer to assess her speech progress though so far she is on track for her adjusted age.
@almondy7995 Thanks for all this detail. What a long road you had, wow. You and she are fighters 
almondy7995
New member
@kimhimmel Forgot to add we had an open PDA! The murmur was first identified on DOL 6 and they were originally just going to monitor it but it started impacting her kidneys so they began to treat it. She had a course of Tylenol and it closed after a week. This was the reason for our follow up with cardiology post-NICU. Just to confirm the PDA had stayed closed and it had!
@almondy7995 Thanks for this. Our dude has a murmur but they aren't worried about it at this time, so, good to know that this route is possible.
@kimhimmel Currently in the NICU with my 30 weeker who just hit 34 weeks today. I’ll try to update this as things move on.
- 30w1d, 1680g, singleton (but my second baby)
- Placental abruption - due to bleeding and emergent nature, no mag or steroid shots.
- Intubated for a week, then on NIMV for about two weeks. CPAP for four days, now on high flow nasal cannula for the last two days. He has intermittent fast breathing but no other issues.
- He was on fluid restriction for the first three weeks due to RDS and a large PDA, but the PDA closed on its own (yay!) so he’s been going up in volume and doing well (fortified breast milk). He started feeding by mouth at 34 weeks, started finishing some bottles at 36 weeks, then really got the hang of it at 37 weeks.
- Around one week in, we got a lot of potential bad news: potential genetic disorder with amino acid levels, potential hemorrhage and large PDA. The amino acid issue was a false positive, the hemorrhage is not 100% proven but if so it’s a grade 1, and the PDA closed.
- Baby came home at 38w on the dot - 55 days in the NICU
- Not sure yet!
@kimhimmel Respiratory distress syndrome and Patent ductus arteriosus (hole/heart defect). Hope you have a short and uneventful stay!!
@kimhimmel Good! We got discharged last week after eight weeks.
Feeding is still a little difficult - baby has a high palate from being intubated so we are working on his latch for bf but hopefully that will get better as he grows a bit.
Hope all is well over there!
Feeding is still a little difficult - baby has a high palate from being intubated so we are working on his latch for bf but hopefully that will get better as he grows a bit.
Hope all is well over there!
@kimhimmel My little girl was born at 27+3, singleton, birth weight was 2 pounds 4 ounces. She got down to 1 pounds 12 ounces and took about 2 weeks to get back up to the 2 pound mark
We’re not sure what caused her to be born, all we know is preterm labor and cervical insufficiency but not sure what caused it. I was in and out of preterm labor multiple times since 23 weeks so I was able to receive multiple rounds of mag, and 2 full rounds of steroids so 4 doses total. I was able to receive all the penicillin for being GBS+ as well.
Breathing has been our biggest issue. She started off on bubble CPAP of 7 at 21%, and then needed increased on oxygen to about 35% and once she hit that consistently they put her on a NIV NAVA for a few weeks rather than intubating. She finally got back to CPAP and went down slowly and around 38 weeks got put on low flow oxygen from CPAP of 4. Then they ended up putting her back up to high flow on 2L because her lungs just weren’t strong enough.
She started eating at 38 weeks as well, she’s 40 weeks now and is having a hard time eating only because of fatigue and difficulty breathing. She got the suck swallow breathe down immediately on her first bottle she did great, she just gets too tired to stay awake and eat and starts getting tachypenic and head bobbing so now they limit her to 25ml bottles and gets the rest through the tube.
No brain bleeds, she has an intermittent murmur that should go away on its own. The only issue she really has is difficulty gaining weight without MTC oil, and BPD. she was trialed off the MTC oil but had to be put back on due to weight loss. The BPD is still our current issue with getting her strong enough to eat well.
Criteria for coming home is hit 4lbs, which she did already. Breathe without support (or low flow oxygen only), take full bottles (50mls right now), gain weight on her own, and pass the car seat test. We won’t do the car seat test until she can meet all the other goals.
We’re not sure what caused her to be born, all we know is preterm labor and cervical insufficiency but not sure what caused it. I was in and out of preterm labor multiple times since 23 weeks so I was able to receive multiple rounds of mag, and 2 full rounds of steroids so 4 doses total. I was able to receive all the penicillin for being GBS+ as well.
Breathing has been our biggest issue. She started off on bubble CPAP of 7 at 21%, and then needed increased on oxygen to about 35% and once she hit that consistently they put her on a NIV NAVA for a few weeks rather than intubating. She finally got back to CPAP and went down slowly and around 38 weeks got put on low flow oxygen from CPAP of 4. Then they ended up putting her back up to high flow on 2L because her lungs just weren’t strong enough.
She started eating at 38 weeks as well, she’s 40 weeks now and is having a hard time eating only because of fatigue and difficulty breathing. She got the suck swallow breathe down immediately on her first bottle she did great, she just gets too tired to stay awake and eat and starts getting tachypenic and head bobbing so now they limit her to 25ml bottles and gets the rest through the tube.
No brain bleeds, she has an intermittent murmur that should go away on its own. The only issue she really has is difficulty gaining weight without MTC oil, and BPD. she was trialed off the MTC oil but had to be put back on due to weight loss. The BPD is still our current issue with getting her strong enough to eat well.
Criteria for coming home is hit 4lbs, which she did already. Breathe without support (or low flow oxygen only), take full bottles (50mls right now), gain weight on her own, and pass the car seat test. We won’t do the car seat test until she can meet all the other goals.