Baby in NICU - unexplained heart rate decelerations

[Anonymous]

We were supposed to be able to get our baby today from the Sibley special care nursery. He has been there five days - he’s small for gestational age and when he was born, he needed oxygen. After that his oxygen issue resolved but he was unable to keep his glucose levels stable and he also needed a feeding tube. We were told we could bring him home today. We had been waiting for a call to say he was ready to come home and his discharge paperwork was ready, but instead we received a call from the neonatologist saying that he had an unexplained heart rate deceleration and that he went pale when he was burped while feeding. They want to keep him another 48 hours at least. The dr didn’t have any explanation other than “he may be less developed than his weeks of gestation suggest.” The idea no one knows what is wrong and they will just observe him and then say “okay he hasn’t had an episode in a while so he’s free to go home” is frightening to me.

Has anyone had any experience with something like this?

[Anonymous]

Are you diabetic or did you have GD?

[Anonymous]

I don’t know how you feel about prayers, but if you accept them, I said one for your baby. Hope this doesn’t offend you.

[Anonymous]

So sorry OP. I had a baby in the NICU for a couple months, so it was different, but it was extremely nerve wracking to bring him home because the rule was 48 hours without an apnea or bradycardiac events (which appears to be your rule). And he had them up until the 48 hours before he was discharged. I insisted on a home monitor for a period of time and the neonatologist agreed. I knew I would never be able to sleep knowing he could be having one of those events while I was asleep. So perhaps ask for one of those. And if they say no, consider an Owlet or similar device. Hang in there.

[Anonymous]

Anonymous wrote:So sorry OP. I had a baby in the NICU for a couple months, so it was different, but it was extremely nerve wracking to bring him home because the rule was 48 hours without an apnea or bradycardiac events (which appears to be your rule). And he had them up until the 48 hours before he was discharged. I insisted on a home monitor for a period of time and the neonatologist agreed. I knew I would never be able to sleep knowing he could be having one of those events while I was asleep. So perhaps ask for one of those. And if they say no, consider an Owlet or similar device. Hang in there.

Also, I will say that if it happened while he was eating, it is much less concerning. That is pretty typical, even for healthy newborns, especially if they have reflux. Was he able to self-recover or did they have to step in (give oxygen, rub his chest, etc)?

[Anonymous]

Sending you and your little one good vibes, OP!

[Anonymous]

My 32-week preemie was in the NICU for 2 weeks.
It was such a stressful time.
Lots of hugs to you and your husband, OP. Stay strong for your little one!

[Anonymous]

Anonymous wrote:
My 32-week preemie was in the NICU for 2 weeks.
It was such a stressful time.
Lots of hugs to you and your husband, OP. Stay strong for your little one!

And to answer your question, the cardiac decelerations don't seem majorly concerning, but they're absolutely right to keep him longer.

[Anonymous]

This is OP. I am caucasian. We are sure about the baby’s gestational age because we did IVF. I had a number of complications during pregnancy - no gestational diabetes, but I had vasa previa (which resolved), baby was diagnosed at a late stage with asymmetric IUGR, and a velamentous cord insertion. We decided to induce at between 38-39 weeks and baby arrived 38 weeks 2 days.

Regarding the incident today - he was about to be released from the nursery and was having a last feeding. When he was being burped (so not eating), his heart rate dropped to something in the 60s, and his oxygen levels fell. He self-recovered without intervention. I was told he would be monitored for another 48 hours but it’s so scary and I worry what might happen when he comes home.

[Anonymous]

Anonymous wrote:This is OP. I am caucasian. We are sure about the baby’s gestational age because we did IVF. I had a number of complications during pregnancy - no gestational diabetes, but I had vasa previa (which resolved), baby was diagnosed at a late stage with asymmetric IUGR, and a velamentous cord insertion. We decided to induce at between 38-39 weeks and baby arrived 38 weeks 2 days.

Regarding the incident today - he was about to be released from the nursery and was having a last feeding. When he was being burped (so not eating), his heart rate dropped to something in the 60s, and his oxygen levels fell. He self-recovered without intervention. I was told he would be monitored for another 48 hours but it’s so scary and I worry what might happen when he comes home.

Yes, you need to ask about that. I'm the PP with the 32 week preemie. DH and I were given a course of neonatal CPR before our baby left the hospital, which thankfully we did not use.

[Anonymous]

“ Black female infants had 2.1 greater odds of survival than did white male infants.”
https://pediatrics.aappublications.org/content/pediatrics/117/1/e106.full.pdf?download=true

[Anonymous]

I think the NICU nurse wasn't being racist, she was being realistic. Medical personnel know the outcome statistics.

OP, I would absolutely insist on a scrip for a hospital grade monitor for the crib and I'd buy the best video monitor I could find. I'd also sleep with the baby in a bassinet in my room for a while. But they won't send him home if they think a bad outcome is likely. All that would be for my peace of mind. it sounds like you are getting really sound care, and of course you'll be nervous but that is natural. Can you hire a night nurse or have a family member assist for a few weeks?

[Anonymous]

Anonymous wrote:This is OP. I am caucasian. We are sure about the baby’s gestational age because we did IVF. I had a number of complications during pregnancy - no gestational diabetes, but I had vasa previa (which resolved), baby was diagnosed at a late stage with asymmetric IUGR, and a velamentous cord insertion. We decided to induce at between 38-39 weeks and baby arrived 38 weeks 2 days.

Regarding the incident today - he was about to be released from the nursery and was having a last feeding. When he was being burped (so not eating), his heart rate dropped to something in the 60s, and his oxygen levels fell. He self-recovered without intervention. I was told he would be monitored for another 48 hours but it’s so scary and I worry what might happen when he comes home.

We had a very similar situation in the special care nursery at Sibley. We were ready to take DS home and he had one oxygen desaturation and was kept for 4 more days. I know it’s very scary. I was terrified the whole time he was there and terrified to bring him home. In hindsight, the doctors and nurses there are incredible and won’t take any risks with your baby. If he needs to stay trust them, and trust them when he’s ready to go home. They will only send him home when he’s ready. Once my DS was home it felt a lot better to not have the monitors on, you get kind of addicted to their constant feedback. Hugs, this is so stressful but the neonatologists know what they’re doing.

[Anonymous]

This is OP, thanks for the many thoughtful responses. The dr says my baby isn’t a preemie because he was born at 38 weeks, so she can’t treat his situation like he is a preemie and feels a bit uncertain how to proceed without more time. I asked if they would do any tests to try and identify the cause and she said no. It’s just monitoring, which I don’t find reassuring, because this incident happened on his fifth day in the NICU and there was no prior pattern, so if they monitor him again for just 48 hours then there is no reason they would likely catch this again. I wasn’t aware I could get a script for a hospital-grade monitor, so that’s very helpful to know!

It’s just so scary to us. We really thought we were bringing our baby home today. I even made his pediatrician appt for tomorrow, which I will cancel first thing when I wake up. I received a text saying it was time for him to check in for his appt at the pediatrician and it just made me sad.

[Anonymous]

Honestly? The moment you had issues, you should have asked to deliver at GW or Fairfax INOVA. Sibley isn't well equipped for NICU. That alone would make me question the doctor.