@expandcontract, that SUCKS about your asthma...I can't believe how out of control it is despite all of those meds! Just bad luck of the draw this time around, I guess.
I can't speak from a patient standpoint on the NICU. But, from a medical standpoint, based on my 3.5 months of NICU rotations as a Peds resident, babies born at 34 weeks and above generally do EXTREMELY well with little complication (honestly, babies above 28ish weeks do well, if they are at a high level center of care and don't develop infectious complications of prematurity). I anticipate all of the steroids that you are receiving and intrauterine "stress" will actually be helpful for the baby's lung development later on, making respiratory complications related to prematurity unlikely. And, the closer the baby gets to full term, the less likely their risk of any infectious complications that would prolong their course. Certainly, there are no guarantees, but statistics are on your side if you get to 32 weeks or above! Even 28 weeks with a benign NICU course should do really well!
@expandcontract I know this is scary, but try to consider yourself lucky to have some time to prepare yourself for the NICU. My water broke at 25+2 with DD, I was admitted, and she was delivered at 26+1 (1 lb 13oz). We spent 102 days in two NICUs (level 4 and level 3) before our jailbreak day, and came home on a feeding tube and apnea monitor.
TL;DR: At 18 months (15 adjusted) DD is a smart child meeting all her milestones ahead of adjusted and chronological targets. TOTAL SUCCESS STORY. But NICU life is hard.
Advice, most of which is geared to longer NICU stays that you hopefully won’t have:
- Figure out if the hospital you’re planning to deliver at has a Level IV or III NICU (or neither, just a nursery). Figure out where the closest Level IV is and try to do some L&D tours that include the NICU at each. If you deliver according to plan at 34 weeks, you probably won’t need the Level IV. If you deliver before 32, you almost certainly will. We didn’t get a chance to tour and it was very confusing at first - and we also didn’t know how to prepare family for visitation rules or have much of a chance to set up our own plan for who could/couldn’t see the baby and when. We also didn’t know much about the doctor/fellow/PA/nurse/specialist rotation, or how much space we’d have bedside (it ranges from 2 chairs to a room at different hospitals).
- Talk to your MFM about steroids, magnesium drops, and other protocols of care for when you expect to deliver and earlier - it’s confusing when you’re in extremis.
- Get a helpful book (I recommend PREEMIES by Dana Weschler Linden) to help you navigate the process. Don’t read it all at once, just the first chapter or so, then the bits that apply later when you’re trying to figure out what the neonatologist just said. Be aware that procedures like transfusions are very common and you won’t have a chance to donate blood. Also, you may need donor milk and that is a good thing to have access to.
- Download MyPreemieApp (or something similar) to journal milestones, numbers off the machines, and questions you mean to ask - it’s really good at reminding you to celebrate successes and take pictures.
- Locate the Ronald McDonald House and talk to a social worker about the hoops you need to jump through to get a room and how much you’ll pay (it’s not free, but it is cheap). Take a tour if you can. Again with it can be confusing and feel rushed, and 90% of the people you’re talking to know it’s an option but not exactly how it works.
- Charm someone into giving you the employee discount card at the hospital cafeteria and parking garage. Thanks, Mom, for working that magic. Also, gas cards and prepaid cards to use for food are CLUTCH gifts.
- Talk to your partner about division of responsibilities, kangaroo care, and visiting. DH had to run our business while I had to pump and it caused a LOT of resentment that he wasn’t there much (even though it was necessary). DH also was way more scared of what was going on because he was way less familiar with it. It’s super common for extended NICU time to create relationship issues, especially when you react differently to the stress, but good communication goes a long way. It’s also super common for NICU parents to have PPD/PTSD, so get familiar with symptoms so you can get prompt treatment if necessary.
- Get familiar with the process to get your kid on insurance - that was a huge stress for me because DD had to get on state CHIP because my insurance won’t cover my family. Six days of one neonatologist (and no other specialists or procedures) was billed to us accidentally, and it was US$48k.
I think that’s the most important stuff...feel free to DM anytime!
@lyse01 You've been incredibly helpful! Thank you so much from the bottom of my heart! Im so sorry your experience was this way but I'm so happy to know that your daughter is doing well! Knowing ahead of time the possibility of NICU is the one thing Im most grateful for. Listening to everyone's stories truly has helped me prepare. The advice you've given especially about reading the books is invaluable. I will check some out from the library. Thank you again so much! ❤❤❤❤
I snooped a little on the High Risk thread and I’m so sorry @melbee81 that this is going on. I’m part of a lot of fb groups where 23 weekers are a happy, healthy thing and I hope you can keep the wee one in as long as possible! Please feel free to PM if you need me.
Re: NICU Success Stories? *Possible TW*
I can't speak from a patient standpoint on the NICU. But, from a medical standpoint, based on my 3.5 months of NICU rotations as a Peds resident, babies born at 34 weeks and above generally do EXTREMELY well with little complication (honestly, babies above 28ish weeks do well, if they are at a high level center of care and don't develop infectious complications of prematurity). I anticipate all of the steroids that you are receiving and intrauterine "stress" will actually be helpful for the baby's lung development later on, making respiratory complications related to prematurity unlikely. And, the closer the baby gets to full term, the less likely their risk of any infectious complications that would prolong their course. Certainly, there are no guarantees, but statistics are on your side if you get to 32 weeks or above! Even 28 weeks with a benign NICU course should do really well!
@expandcontract I know this is scary, but try to consider yourself lucky to have some time to prepare yourself for the NICU. My water broke at 25+2 with DD, I was admitted, and she was delivered at 26+1 (1 lb 13oz). We spent 102 days in two NICUs (level 4 and level 3) before our jailbreak day, and came home on a feeding tube and apnea monitor.
TL;DR: At 18 months (15 adjusted) DD is a smart child meeting all her milestones ahead of adjusted and chronological targets. TOTAL SUCCESS STORY. But NICU life is hard.
Advice, most of which is geared to longer NICU stays that you hopefully won’t have:
- Figure out if the hospital you’re planning to deliver at has a Level IV or III NICU (or neither, just a nursery). Figure out where the closest Level IV is and try to do some L&D tours that include the NICU at each. If you deliver according to plan at 34 weeks, you probably won’t need the Level IV. If you deliver before 32, you almost certainly will. We didn’t get a chance to tour and it was very confusing at first - and we also didn’t know how to prepare family for visitation rules or have much of a chance to set up our own plan for who could/couldn’t see the baby and when. We also didn’t know much about the doctor/fellow/PA/nurse/specialist rotation, or how much space we’d have bedside (it ranges from 2 chairs to a room at different hospitals).
- Talk to your MFM about steroids, magnesium drops, and other protocols of care for when you expect to deliver and earlier - it’s confusing when you’re in extremis.
- Get a helpful book (I recommend PREEMIES by Dana Weschler Linden) to help you navigate the process. Don’t read it all at once, just the first chapter or so, then the bits that apply later when you’re trying to figure out what the neonatologist just said. Be aware that procedures like transfusions are very common and you won’t have a chance to donate blood. Also, you may need donor milk and that is a good thing to have access to.
- Download MyPreemieApp (or something similar) to journal milestones, numbers off the machines, and questions you mean to ask - it’s really good at reminding you to celebrate successes and take pictures.
- Locate the Ronald McDonald House and talk to a social worker about the hoops you need to jump through to get a room and how much you’ll pay (it’s not free, but it is cheap). Take a tour if you can. Again with it can be confusing and feel rushed, and 90% of the people you’re talking to know it’s an option but not exactly how it works.
- Charm someone into giving you the employee discount card at the hospital cafeteria and parking garage. Thanks, Mom, for working that magic. Also, gas cards and prepaid cards to use for food are CLUTCH gifts.
- Talk to your partner about division of responsibilities, kangaroo care, and visiting. DH had to run our business while I had to pump and it caused a LOT of resentment that he wasn’t there much (even though it was necessary). DH also was way more scared of what was going on because he was way less familiar with it. It’s super common for extended NICU time to create relationship issues, especially when you react differently to the stress, but good communication goes a long way. It’s also super common for NICU parents to have PPD/PTSD, so get familiar with symptoms so you can get prompt treatment if necessary.
- Get familiar with the process to get your kid on insurance - that was a huge stress for me because DD had to get on state CHIP because my insurance won’t cover my family. Six days of one neonatologist (and no other specialists or procedures) was billed to us accidentally, and it was US$48k.
I think that’s the most important stuff...feel free to DM anytime!
Knowing ahead of time the possibility of NICU is the one thing Im most grateful for. Listening to everyone's stories truly has helped me prepare.
The advice you've given especially about reading the books is invaluable. I will check some out from the library. Thank you again so much! ❤❤❤❤
@melbee81 check out @lyse01’s response. Such good info!
I snooped a little on the High Risk thread and I’m so sorry @melbee81 that this is going on. I’m part of a lot of fb groups where 23 weekers are a happy, healthy thing and I hope you can keep the wee one in as long as possible! Please feel free to PM if you need me.