I need your thoughts/advice (long)

aforst · June 2014

If you remember my post from Tuesday, DD was supposed to come home yesterday but had a Brady on Tuesday so we couldn't. They put her on a 72 hr watch from that point. She had 3 of them last night.

They were all less than 10 secs long, she did not desat and they were all self-resolved (she didn't need stimulation to come out of them).

It appears our options at this point are 1.) to go home on a heart monitor tomorrow or 2.) wait a few more days to see if she knocks it off. If she doesn't, we still go home on a monitor. I think these are reflux related, so I'm not sure it's likely to stop in the next few days.

Thoughts? I'm so desperate to get out of here and not very confident that a few more days are going to make any difference.

Her pediatrician will monitor her and he'll be the one to take her off the monitor.

I know this decision is ultimately up to DH and I, I'm just wondering what your thoughts are.

Sorry so long. I don't have pics of food or booze but I do have some squish for your troubles.

studyinpink · June 2014

Do you know how low her heart rate went?

If you think it is reflux (sounds like it is), and feel comfortable taking her home and the team feels comfortable with that...

I would take her home. If parents are comfortable, and she is having close monitoring (sounds like she is), and they have no reason to think she is sick- I would want out of there ASAP before she gets sick again.

Do what you are comfortable with.
Hugs.

shadypines · June 2014

((Hugs))

I would take her home.

aforst · June 2014

One was 79, one was 66 and I don't know about the third although the NP mentioned it was in the 50's.

They don't make me nervous bc she has always come out of them without stimulation (except when she was sick). I'm kind of leaning towards getting out of here asap. My only reservation is what if we could go home without it? At the same time, like I said, I don't feel confident that will be the case.

jorkz821 · June 2014

When was the last time she had a brad needing intervention?

aforst · June 2014

jorkz821 said:
When was the last time she had a brad needing intervention?

Memorial Day when she was very sick.

jorkz821 · June 2014

I would take her home on the monitor. It's really just for peace of mind anyways right? Will you only have it on her overnight, or all the time? Will she need a sleep study or something in the future?

aforst · June 2014

jorkz821 said:
I would take her home on the monitor. It's really just for peace of mind anyways right? Will you only have it on her overnight, or all the time? Will she need a sleep study or something in the future?

I'm told it has to be on her all the time, except for bath. It's portable, like a purse so we can move around/go out with it. I don't believe she'll need a sleep study but I don't know that for sure. Yes, it's essentially for peace of mind

ppants · June 2014

I'm sorry that you having to deal with all of this. My twins were premature and came home on monitors and they had to have caffeine also. It was pretty reasuring to have the monitor and we didn't have very many alarms. I'd bring her home on a monitor. I hope your entire family is back home soon!

aforst · June 2014

twolittlewheels said:
Honestly, I would probably wait a few more days and see what happens. I have horrible anxiety though and wouldn't get a minute of sleep and would make myself sick with worry.

That said, Blake had reflux-induced apnea/brady spells and he always brought himself out of them. He had a few a night so the monitor would go off but never one that needed readmission to the hospital. Is she being medicated for the reflux?

It's just a matter of your comfort level, anxiety and distance to the hospital in case of emergency.

I tend to be anxious too, but since she'll be on the monitor, I assume it'll be a little easier to sleep since it will alarm us if she's having a problem.

I guess my feeling is that if the dr was really worried about these, they wouldn't agree to send us home on a monitor. We are about 10 mins from the hospital.

aforst · June 2014

ChickenOnSunday said:
Does your NICU have a sleep room for families that are soon to be discharged? We spent one night in the room prior to the first attempt at discharge. It gave us an idea of how often W needed to be fed, changed, life with the omphalocele, etc.

Could you do something similar to see what it is like to go home with a heart monitor?

They do have sleep rooms here. That's not a bad idea

Pips09 · June 2014

Bring her home on the monitor. My daughter was also discharged from the NICU on an apnea monitor, and even though it was a pain in the ass to deal with, it gave us huge peace of mind knowing she was still being "watched". It will help with the anxiety, and you'll get her home.

aforst · June 2014

BunkinMama said:
@ChickenOnSunday‌ 's idea sounds like a good option to test and see how you feel about it afterwards if you can do that.

I would want to take her home with the monitor. Isn't there a special car seat for when a baby needs one of those?
Also I think you said she did better when she was elevated but then they layer her flat again. Will you be able to lay her elevated at home?

We're pretty "reflux conscious" at home. We hold them upright for a bit Well, we are not going home tomorrow. She's dropping her heart rate again. I'm devastated. We can't seem to catch a break.

RondackHiker · June 2014

I'm so sorry you're dealing with all of this.

aforst · June 2014

aforst said:

BunkinMama said:
@ChickenOnSunday‌ 's idea sounds like a good option to test and see how you feel about it afterwards if you can do that.

I would want to take her home with the monitor. Isn't there a special car seat for when a baby needs one of those?
Also I think you said she did better when she was elevated but then they layer her flat again. Will you be able to lay her elevated at home?
We're pretty "reflux conscious" at home. We hold them upright for a bit Well, we are not going home tomorrow. She's dropping her heart rate again. I'm devastated. We can't seem to catch a break.

That last part about us not going home tomorrow shouldn't be there!! It some how copied from my post the other day. Stupid mobile.

I think we'll most likely go home on the monitor. Hopefully tomorrow but if not in the next couple of days

aforst · June 2014

JerseySprouts said:
Hugs @aforst! If her medical team is comfortable with her being home and you think your anxiety is manageable then go for it! Can you wear her with the monitor on?

That's a great question! I'm not sure and will have to find out. She's very picky about being held so I'm planning to rely on my moby to get shit done

aforst · June 2014

@twolittlewheels‌ The nurse did say the bag was kind of heavy. I guess we'll just see. It makes me nervous bc I don't know what to expect with the monitor/how much it will effect our daily lives. I'm sure once we get home and get the hang of it, it won't seem so bad.

It's not my ideal situation, but none of this has been. This whole thing has taught me that I just have to learn to let go of all my expectations. It's hard to give up control though!

Pips09 · June 2014

JerseySprouts said:

Hugs @aforst! If her medical team is comfortable with her being home and you think your anxiety is manageable then go for it! Can you wear her with the monitor on?

Yes, you can. The monitor has a strap, like a purse, so you can disconnect the plug and have it run on the battery. It's kind of heavy, but doable. You will likely not want to use a Moby or a wrap. The kind of scrunched up position it puts the baby in will cause the leads to not be placed properly, and it will likely set off the alarm.

KTdidit · June 2014

I would take her home. I hope the transition goes good for you all

aforst · June 2014

mbenit4 said:
The monitor is heavy. Most leads need room or go off. Do both of you know infant CPR? Can you get to a hospital or them to you in an emergency?

Basically we're looking at the lesser of two "evils" at this point. Our dr is very confident sending her home on a monitor. We hashed this out for over an hour today with him.

They already brought the monitor in, it's not that heavy. They will spend a couple of hours with DH and I tomorrow training us on the monitor and infant cpr. We are only 10 mins from the ER.

In all honesty, there has been nothing to suggest these events are life threatening. They are very conservative with the babies. I'm confident they wouldn't offer this option if they didn't feel comfortable with it.

I know you didn't need this long of an explanation. This isn't something we're taking lightly. I'm having a hard time dealing with the feelings I'm having about bringing her home. This is my third kid. I should have this down. It feels weird to be nervous about this.

I feel like I sound bitchy, I SO don't mean too.

I've also had a few beers.

aforst · June 2014

Well, she had a Brady last night with a desat. The nurse noted it looked like she was refluxing. I think all of these are related to reflux. We're waiting to see the dr but I'm guessing he'll set us out another 5 days at this point. She always comes out of them on her own, but I don't think that will matter.

If this is reflux related I don't see it ending any time soon. It's another 5 days on their monitors and another 5 days for them to see some random thing that will keep us here longer.

I don't want it to seem like I'm more interested in taking her home than I am about her health. I just honestly don't have any concerns about taking her home.

I'm feeling so hopeless right now. Rationally I know she'll come home eventually, but in the meantime, every day that goes by is painful. I may have to go back to work in a few weeks. I may get little to no time at home with my daughter.

studyinpink · June 2014

Is she on reflux meds? Have they talked about thickening her feeds?

studyinpink · June 2014

I know this might not fly with you- I don't think I could do it but-

Often, moms would go back to work early so they could have a few weeks with baby when baby is discharged.

aforst · June 2014

Studyinpink said:
Is she on reflux meds? Have they talked about thickening her feeds?

They won't put her on reflux meds right now. We were thickening her feeds before she got sick, so I might ask about that again.

studyinpink · June 2014

How many weeks is she?

Jump on the thickening. It can help it make it a little bit harder for it to come up for some babies.

jorkz821 · June 2014

Sorry to see the latest update

. These setbacks must be so frustrating.

aforst · June 2014

Whoever said the NICU is a roller coaster wasn't lying. The dr came in a looked more closely at her Brady. The nurse had charted that her heart rate went into the 40's but it didn't. It only went down to 78. So, we're still on track for Sunday....for now.

We had our monitor and CPR training. The plan is to room in with her tomorrow night and if all goes well, possibly home on Sunday.