New to NICU w/ 27 years weeker. Brady spells

[meetz]

Hi I’m new to the NICU world. Baby was born at 27w +2 due to preterm labor and pre-eclampsia. She’s been doing well overall and has been in NICU for 10 days now. She’s tolerating food ok, gaining weight, head scan is ok, heart rate is good, she has 1 IV line in her foot now where she gets fat emulsions. But She continues to have Brady spells. Less in count but she does have to get interventions at times when she is not coming out of them herself. Of course the alarms and what not freak me the f out. Please tell me they get better. It scares me to see her respiratory rate and her oxygenation drop like that. She does receive caffeine daily to help as well. Im trying to be mindful that she’s barely been in the nicu for 10 days and have patience so I recognize that it’s itty bitty baby steps. Any advise that can help this anxious first time IVF and now NICU mama out regarding Brady spells or anything in general. Thank you

 

[jsw3883]

@meetz Hey! 27+1 weeker dad on day 63.

So first off, welcome to the worst club ever. I’m sorry you have to go through this.

Second, Brady’s and desats never get easier to tolerate but eventually they do get better as your baby grows and develops. You are right they are terrifying to watch but it is incredibly normal and are often triggered by feeds.

Here are some comments I made in another thread for advice.

1. Establish a routine at the hospital. Come in for rounds, do care, hold of you can and then go home. You need to to take care of yourself especially with the trauma of this birth.
2. PLEASE don’t sleep at the nicu. Unless they tell you your baby is clinging to life, don’t do it. You’ll see things you can’t ever unsee. You don’t need any more trauma.
3. Find primary nurses as quickly as possible. Each day meet the nurse and if you click ask them to primary for you. This means you will know the nurse taking care of your baby and they will be first on the list for assignments. This will also mean you need to come in at night to meet some night nurses.
4. Give yourself grace to not always be strong. The nicu is the worst rollercoaster haunted house marathon someone else signed you up for..be ok with breaking down and crying. Grieve the parts of your pregnancy you missed.
5. Establish communication channels and routines. We update a blog for the general population that is a fraction of the info and then update a family text thread for daily updates. We told everyone explicitly we will not respond to questions or asking for updates. We are in survival mode.

This sub has kept me sane over the 63 days. Hang out here and ask any questions when they come up.

 

[mozo41]

@meetz Super common. With my 27 and 2 daughter they called her the baby of many colors cause she liked destating all the way until 37 weeks. She would turn her face red, then grey, then blue.

She ended up coming home on low flow (.1) oxygen and was off it within a month and a half of coming home.

Feel free to reach out if you need to vent.

 

[meetz]

@mozo41 Omg thank you . I appreciate your feedback so much. It’s been a lonely road in that we don’t have family that’s gone through a nicu stay before so it’s nice to hear that there are others out there that have gone through this experience.

 

[lorien]

@meetz Also had a 27-weeker, he spent 90 days in the NICU and ended up coming home on low flow oxygen (.125L/min) for a couple months due to desats during feeds. It’s definitely scary when you see desats but it does get better as you get more exposure. You’ll notice them getting less frequent/less intense over time and as you start to pick up signs from your baby, you’ll also start to notice how many false alarms those oxygen monitors have. When our guy came home on oxygen we actually stopped using the monitor altogether because it would drop to 50% when he was doing just fine.

 

[john53]

@meetz Mom of ex 25 weekend who is now thriving 2 year old. Still vividly remember the Brady’s and desats. Went on for 2-2.5 months in NICU. He needed intervention, caffeine and the works. If they haven’t told you, NICU journey unlike other recoveries is not linear. There were times he didn’t have Bradys or even desats for three days straight and then the alarms again. It was hard each time, and it will be. But, it all will become a memory like it is for me. It’s very normal and in that sense predictable and manageable for nurses and doctors. Your baby will be fine, but it will be a tough journey for now. But reading others stories connecting with them gave me hope so here for you.

 

[richard76]

@meetz My daughter was 30 weeks but extremely growth restricted so the size of a 24 weeker. She was in the NICU 84 days and while she had minimal brady's she desatted a ton until a few weeks before we went home and her body slowly regulated. The nurses explained it was totally normal. It will all slow down in time until they stop entirely but I know how upsetting the alarms can be. Hang in there! It gets better!

 

[kannu14]

@meetz My 28+6er twins both had a ton. One of them came home earlier this week (3 days before her due date) and had a spell last week. They are so normal that NICUs allow babies to have them up to 5 days before discharge (3 days when they happen with a feed). As another poster said, babies grow out of them but unfortunately they will come back when your baby starts bottle feeding in the mid- to late 30 weeks and then they will have to grow out of them again. Hang in there.

 

[fivequestions]

@meetz My 29-weeker started desatting & bradying when they began protected breast feeding because they didn't quite get the hang of the suck swallow breathe reflex (on occasion, LO bradyed outside of feeds). It was like they were so eager to feed that they forgot to breathe, just suck suck suck suck swallow. And it was terrifying with the alarms going off, the blue lips, the stimming. Then the baby would zonk out & not feed anymore. Yes, the nurses say they would grow out of it, that they will learn to be coordinated, but most importantly, the nurses told me to look for the baby's cues, not the alarms. And I learned to watch LO's shoulder lift every time they took a breath during feeds, & when I didn't see the shoulder lift for a couple of seconds, I immediately released the latch & was able to stave off the desat &/or Brady (sometimes a very short-lived alarm goes off, but LO didn't need intervention). That gave me the confidence that I could protect my newborn at home until they became more coordinated.

Just reiterating what everyone has said: this is so normal & it will get better. Even full-term babies desat, it's just that their parents don't know it. Your preemie is currently in the best place with the best care, so give yourself some self-care, too. When I took a day off, I missed my baby so much, but as I learned in this sub, this is a marathon, not a sprint.

 

[nevergiveup0925]

@meetz That sounds normal to me, both of my boys would destat up until the end. Give them time, they got this!

 

[linda1223]

@meetz My baby was 32w0d. She had a lot of bradycardia episodes. We were told it’s normal for premies. She was able to get feeding down but was still having bradys. She was in NICU for 4 weeks. She ended up coming home on caffeine and monitors for 4 months, along with a nurse coming once a week to look at the monitor results. She is now 6 and doing well without complications. Hope this helps.

 

[don7777]

@meetz Hate Brady’s it felt like they would never stop for our 33 weeker. All of a sudden they stopped and within 3 days she was home. It’s really hard to believe trust me we were in your shoes but there is a light switch that goes off and the Brady’s stop. They Brady’s pushed our discharge three times

 

[geraldos]

@meetz These were my biggest anxiety in the NICU. Our boy was born at 25+2 and the cumulative affect of constant events like this was really rough on my mental health. It made it hard to relax and enjoy cuddles. Our boy had lots and lots of these and had to have his caffeine increased multiple times. For a while it felt like they would never stop. One day it got too much for me and I burst into tears in front of the doctors because I was worried about the curative affect these braddy desats were having on my babies development. A thing the doctor said that helped me was that while it no doubt feels like they last for a really long time when you are with your baby, they are not overly worried about these incidents, and they don’t have any strong correlation with babies neurological development. They expect them to do this. Even the scary ones that require physical stimulation. His braddy desats lasted longer than we would have hoped, but one day they stopped and he never had it again. Our boy came home at 43 weeks with out any oxygen and we are in awe of how far he has come. I know this isn’t everyone’s story, and we’ve been lucky, but just wanted to share with you our story because watching his breathing and heart rate drop day in and day out was the hardest thing I’ve ever done. Sending solidarity and best wishes.

 

[biblestudy]

@meetz This is extremely common and most premature babies experience it. That doesn't make it any easier, but hopefully it'll help ease the concern a tiny bit.

My son was born at 27+1, so I know how you feel.

There's so much to learn, so let me know if you have any specific questions and I'll gladly help out.

 

[meetz]

@biblestudy Yes, the respiratory therapist and nurses tell me that it’s extremely common as well as the dr but it’s almost like logically it’s not computing in my brain if that makes sense. I’m thinking that I’m mostly processing things emotionally right now with my postpartum brain. Anyways I really do appreciate your feedback and sharing your experience . It’s so nice to hear from fellow moms of 27 weekers.

 

[biblestudy]

@meetz It's definitely difficult to comprehend. I remember thinking, "No, he's clearly NOT okay. Isn't there something you can do to stop this?"

Then after a few weeks, I was yelling across the unit, "Just a brady! He's good!"

Hopefully it gets easier for you to deal with, and your daughter has a relatively uneventful stay. This is a great sub for questions, support, whatever you need.

 

[sennacherib]

@meetz It gets better, but don’t get discouraged if they happen for a little while. One of my twins had a brady a day before discharge and had to stay an extra 5 days. My 29 weekers were in NICU for 98 days, and came home without anything.