Baby in NICU - unexplained heart rate decelerations

[Anonymous]

Our full term daughter had to spend 48 hrs in the NICU at Georgetown and her oxygen levels would drop every time she cried and the monitor would beep - the nurses treated it as completely normal. I wished I had never seen that because when I brought her home I worried so much more when she was crying.

[Anonymous]

This is OP. I hear you about switching to another hospital with a higher level NICU, but we can’t change what’s done. We are first time parents, we had friends who have delivered at Sibley without incident, and I had a lot of confidence in the Sibley MFMs who were treating me during pregnancy.

[Anonymous]

Anonymous wrote:

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)?

Yes, good points. I had similar experiences with my baby in NICU for a few weeks. OP, he will thrive when you get him home.

[Anonymous]

Anonymous wrote:This is OP. I hear you about switching to another hospital with a higher level NICU, but we can’t change what’s done. We are first time parents, we had friends who have delivered at Sibley without incident, and I had a lot of confidence in the Sibley MFMs who were treating me during pregnancy.

That's kind of the thing with them- AMAZING with no incidents. You have an incedent and it isn't really where you want to be. They can't do a transfer to GW?

[Anonymous]

Both of my preemies had decels in the NICU and while feeding when they came home. It can freak you out I'm not gonna lie, but I think they are pretty common and you get used to it, then they grow out of it.

[Anonymous]

We had a very bad experience with Sibley's special care nursery. Really terrible. In retrospect we wish we'd checked out AMA and driven our baby to Children's. (Our baby was fine to make that transition.)

[Anonymous]

What’s with the histrionics about telling OP to switch hospitals? For a term baby, no less, who was about to ge discharged. OP is looking for reassurances and sharing your own bad Sibley experience is completely unhelpful. So is telling her to switch hospitals. The person she needs to be speaking with is the neonatologist (note that the Sibley neonatologists also work at Georgetown, which is a level 4 NICU, so if a transfer was needed they would have done that).

OP I know it’s scary but you need to get more information from the neonatologist. Be a mama bear. Ask the questions you came on here to ask. If you don’t feel reassured or better, tell them. If you want a second opinion, ask. If you’re worried about taking him home, ask what you can do if this happens at home. Talk with the nurses and get their thoughts about his condition and what they think. Don’t hesitate to advocate for your child. I know it is scary and intimidating for your child
To be in the NICU but the doctors and nurses caring for your baby are the people best equipped to help you.

[Anonymous]

Thanks! This is OP and it is scary. I wasn’t comforted when the neonatologist said they didn’t plan to run any additional tests. She said that they would keep him for further observation. That’s it. And then she said we should make sure we have taken infant CPR. (We have - but did not make us feel reassured!!!!).

I guess I am struggling with this and wanted to know whether folks here had gone through this, with heart rate/oxygen decreases. I admit I have mulled over whether we should try to transfer him. I don’t know. I also realize that sometimes there simply is no answer/explanation and maybe that’s the case here.

[Anonymous]

OP then you need to say, I find what you are telling me very concerning and it’s making me feel anxious.

[Anonymous]

My daughter was born much earlier, but she ended up in the NICU much longer than expected because of this issue. I think you need to share your concerns with the neonatologist and ask for more information and for some scenarios about what happens next. If you are feeling scared, be direct about that: "our last conversation with you left us feeling really fearful that..." I think it's likely that the Neo came off more negative that she meant to be. It is sad and scary to have a baby in the NICU, but I think this is a very common issue and your baby likely has an extremely good prognosis. We were told to watch our baby very carefully during feedings and we did. She never had a serious episode once she was home. Thinking of you!

[Anonymous]

Over 48 you will have to encounter at least one maybe two neonatalogists. Her demeanor or delivery was bad. Maybe another will be better. If you are worried, ask to talk to the attending.

You will not leave "comfortable" because this sucks and is scary. But you can leave informed and aware. My 1 month old was hospitalized for a week. She had periods of not breathing but was not having apnea because that is 20 seconds ( which is insanely long) with no breath. We never found the reason why. I thought I would never sleep. But she is two and fine. But leaving the hospital was scary.

But I left with things to do and look for.

This sucks and I am sorry

[Anonymous]

I shared my family's story but it was deleted because someone didn't like it.

It's very stressful to have a baby in the NICU, OP. Every day could be the day that baby comes home but so many days are not that day. Eventually that day will come.

[Anonymous]

Op, what doctor are you dealing with there?

[Anonymous]

OP, I think you need to get a second opinion from a doctor not at Sibley. Depending on where you live, also consider Georgetown or Children’s, if more convenient than Inova Fairfax. Even after discharge, you need more than you’re getting.

Hugs. I know this is a hugely stressful time.

[Anonymous]

Anonymous wrote: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.

This is a bit harsh but I agree with PP. I also had a baby in the Sibley special care nursery. He had very bad jaundice and was admitted, discharged, readmitted, etc. This rollercoaster/seesaw that went on for close to a week was due to the fact that the doctors had no idea what the hell they were doing. In my experience, the neonatologists and pediatricians at Sibley SUCK. They have terrible bedside manners and are incompetent. Their M.O. is to cover their asses in terms of avoiding liability. Which is to say that they do not treat the patient for the patient's best interest- but rather for their own.

OP- I would seriously consider having your baby transferred to Georgetown or Children's National asap. Do not leave him/her at Sibley.