Info for friends - Twins in NICU

[ursaminor]

Hey there everyone,

Our friends recently had twins by C-section a little over a week ago. I believe the babes were 1.5 mo early. They weigh 4 something LBs and there is concern about post birth weight loss. one of the babes had slightly more trouble latching on and difficulty maintaining body temp. The parents were advised to give minimal contact and leave her in the incubator unless nursing.
Now the parents were discharged but the babies remain in the hosp. They are staying in a van in the parking structure so they can nurse every 2 to 3 hours. The parents wanted to just take the babies home against med advice but a nurse advised them not to because they may get slapped with insurance bills for doing so.
The mother feels it best to give the babe as much skin to skin. They want to go home. Any advice I can pass along to them?

[Momof4kidz]

I would strongly advise them NOT to take the babies home agains medical advice. They may seem healthy but could have problems. If they go home and have a spell of apnea or bradicardia their parents cant get them out of it. The NICU will discharge them when they are ready. Skin to skin is helpful, but if they are telling them not to, then there is a reason. They may desat when moved around too much. If they are in an incubator still its because they can not maintian their own body temperature. If they go home and cant do this, their temp will continue to drop until their organs begin to shut down. It really would be a bad idea to take them home against medical advice. Encourage them to be patient, the babies will get there in their own time.

[DocsNemesis]

It sounds like at least one of her babies still needs to be there for sure. If they can't maintain a body temp while being held skin to skin with a blanket over the exposed skin, they really really need to stay there. I'd ask if they could do kangaroo care as much as possible and put the baby with the temp issues back in the incubator whenever the temp drops too much. Is she doing kangaroo care or just trying to hold the babies? That could really make a difference-skin on skin and covering the backside of the baby provides a lot of heat.

If she's doing this and the baby is still getting cold quickly then I'd agree with the hospital, the baby needs to be in the incubator as much as possible. If they arn't even letting her try other things, then I disagree, they should be trying more-unless as the pp said, baby is having desats.

They really need to leave the babies there for now, especially the one with possible growth/temp issues. Its got to be tough, but its where they need to be for now. She's definately doing great breastfeeding though, make sure she knows that!

Now, say a few more weeks goes by and both babies are doing great but for some reason they won't let them go, then maybe they can weigh their options. I'm not totally against leaving AMA-I did it myself with my son after hospital policy kept him there 2 extra weeks (he was having a mild desat every few days and hospital policy said he had to be desat free for at least 5 days-he had his timer reset on day 4 sooo many times) but it really sounds like they need to be there for now.

[moaningminny]

I wouldn't advise them to leave AMA.

I actually wish that DD hadn't been discharged when she had. She'd had a mild A & B 3 days before discharge, and ended up back in the hospital 2 weeks later because it had been determined that she hadn't completely outgrown her apnea of prematurity. There's nothing quite like seeing your child turn blue and go limp on you while your at home and don't have access to medical options like you do at the hospital. Very scarey.

[ursaminor]

Thanks for all the comments. I know they want the best for their babies, even if it means being in the hosp. a little longer. otherwise I think they are both doing well considering being 1.5 months early. I will let her know about the kangaroo care, too. I feel kinda bad that the mama has to stay in a van and cannot continue rooming in, in order to BF her babes. Maybe I will offer to donate them some of my milk if they need it.
thanks everyone!

[DocsNemesis]

That does really suck. The hospital my son was in allowed parents to stay 24/7 if they wanted-all the babies have private rooms there and theres a recliner and a fold out bed. Its too bad more places arn't like that. The next closest hospital to me has such a different NICU.

Having a blue baby would definately be scary. My ds hadn't ever gone blue, even when his oxygen levels stayed low for awhile. Also, when I say we took him home AMA, we did, but keep in mind that we also had the children's hospital come in and do tests to be sure it was JUST mild preemie apnea and not something worse. The doctor verified as well that his oxygen levels had never gone anywhere near dangerous levels. According to 2 docs there, they can dip to 60% and have no adverse effects, as baby's in the womb actually maintain a 60% oxygen saturation. My son had never dipped below 70% and that was only once-all the other desats were about 80%, nowhere near dangerous.

The dumb thing was that we wanted to take him home on a monitor so I could make sure nothing bad happened and be sure if he was in a bad position or something, I could move him (most of his desats occured while being held and getting slightly crunched up). The doctors refused, saying if he wasn't well enough to be home, he shouldn't be-even though he knew we were taking him AMA. When I asked what they'd do if this went on another month or two months, what if he was still having desats? He said they'd send him home on a monitor. -_- I'm pretty sure he was just trying to punish me for taking him AMA.

[sbrinton]

There is lots and lots of good research out there about the benefits of kangaroo care. I would encourage your friends to talk about this with their doctors and nurses and see if they can come up with a plan.

In most cases, it's not stressful for a baby (especially at 34 weeks) to do kangaroo care. What can be hard are the transitions in and out of the incubator. Maybe they can ask if they can do kangaroo care for the full 3 hours between feeds some of the time. Our NICU preferred for mom and dad to really settle in to kangaroo care, rather than to just hold the baby for 20 minutes or so and then put them back.