n is for nicu

Jenny Matlock

ok. so n for nicu isn't terribly creative- but i hope this post can be helpful to some of you that are facing a stay in the nicu and weren't able to have a nicu tour. if you know someone who has a baby in the nicu, or a preemie already at home, this can be helpful for you to see where there baby is/was and what they saw and dealt with, as well as preparing you to visit the baby in the nicu if you get the chance. this first post will be about breathing interventions.

as a disclaimer, all nicu's are different. so the machines may be different, the equipment may look different and the procedures and policies will definitely be different... but the general flow of things will most likely be the same. the neonatal intensive care unit can be overwhelming, scary, and is definitely stressful. it's important to seek out as much help as you can and try to prepare yourself as much as possible. if you have any questions about specific definitions you can look to the right in the margin for the glossary.. it has pretty much every term you could possibly hear. (it opens in a separate window- so no fear- you won't lose track of this post.)

to start with... here is a basic diagram i found online. then we'll go into some categories and pictures.
  • in our nicu i never saw a baby with the vent through its nose, but it can be through either the nose or mouth. 
  • the picc line can also be in the arm, or any large vein. 
  • sometimes the babies can even have IV's in their scalp. these are really harmless, and very effective and easy to get, but they freak parents out... so they're generally avoided when possible.
Breathing assistance:

we'll start from the most intervention, to the least.

ECMO- extracorporeal membrane oxygenation.
ecmo basically just means "oxygenating outside the body". ecmo takes all the work away from the body so it can work to heal and grow. a ventilator causes some amount of damage whenever it is used, (which is why wren had so much lung damage- she was vented for 2 weeks), so being able to turn down the vent and put the baby on ECMO gives the body a break. i, admittedly, know little about this other than what i've heard nurses talking about... so if you have personal experience i'd love to hear it and share it.
i know that it is not very common... and none of the level 3 nicus in our area had the capability. (we were on oahu, which had 3, level 3, nicus- i believe the closest location was san diego.) so it's possible you'll have a transport to look forward to... like you don't have anything else going on. most preemies won't have to deal with this level of intervention, but it's possible... so i've listed it here.

sweet baby on ecmo

ecmo machine

oscillator- HFOV- high frequency oscillatory ventilator. this oscillator does all the work for the lungs. one of the nurses explained it as a pistol shooting really fast.... an oscillator goes so fast (up to 900 breaths per minute) that it doesn't work with the natural cycles like a typical ventilator will. but it is said to not cause as much damage. i've read medical journals that show both a regular ventilator and an HFOV  basically have the same positive outcome. (babies that are healthy with no lasting lung issues.)

vent- the is a machine that helps babies (or adults) breathe. historically they caused lots of damage because they didn't work with the patients' natural breathing cycle. the vents now are more intuitive, and cause less damage. but, it's important to remember that every day on the vent is causing some damage. so it's a toss up... is the breathing assistance (oxygen level) more important than the health of the lungs. with wren, she got an infection after being on the vent for a little bit. i believe- without going back to check- that she was extubated and re-intubated 3 times? maybe twice? at one point she got a pulmonary infection- borderline pneumonia- and the question was, if she's sick will she be able to breathe ok if we take her off? and, if we leave her on, how much longer will it take for the infection to go away? (having the foreign object down her throat is probably what gave her the infection to begin with, and it certainly aggravated it as well.) for us, we hated to walk in and see this next to her isolette:
here's wren with the vent:

  • you can see above that it sort of splits off into two different tubes at the edge of the picture. one of those is for cleaning the gunk out of the tube- it's suction. and they plunge down with a plunger, cutting off the air- so sometimes the babies can get anxious, and then immediately pull back up, draining all sorts of goo usually. it just takes a few seconds to suction, and it needs to be done regularly.
  • you can also see above the gnarly tape they use to hold the vent to her face. it's really necessary as she extubated herself once.. and tried to do it many more times! 
  • we actually enjoyed the vent time because it meant we got to see a different part of her face. (always look at the up side- right?) one of the things that helped manage all the tubing was attaching the feeding tube up to the vent tube. (rather than having the vent come out of her mouth straight, and the feeding tube taped to her chin like it is in the picture above.) this also allows for her to have more access to a binky. yes, there is room for a vent, feeding tube, AND binky in that tiny mouth.
  • many neos/nurses/nicus won't allow for kangaroo care while on a vent. in our nicu, it was basically at the nurses' discretion. (they're the ones that have to be there if the baby has a problem.) we only held her a few times when she was on the vent... and a HUGE thank you to chris who let us. it means so much to hold your baby when you can't do anything else- even stroke their skin! chris had this policy because twice (or three times? my memory is foggy.) she had told the parents "you can hold tomorrow when they come off the vent." and the baby had died that night. that happened to her more than once... where the parents actually never got to hold their living baby. so, she adopted the "you can pretty much hold them no matter what" attitude that we were so thankful for. when you kangaroo your baby on a vent, you basically just have to be very careful not to extubate them or wiggle them too much. kangaroo care is super important, so if you feel like you're able, and they will let you- hold that sweet baby no matter what!
  • after being extubated the first time, when they re-intubated her they actually had to sedate her. it was actually TERRIBLE to see her so uncomfortable. it was, hands down, the most uncomfortable i've ever seen her to this day. she was writhing in discomfort (pain?)... i actually couldn't watch it and had to leave and i didn't take a single picture that day. i think it was the only day that i didn't even take any pictures. here's the post.
  • i posted the chain of events for extubation number 2.

CPAP- continuous positive airway pressure. this can be used to deliver room air, or supplemental oxygen. it's usually delivered through a mask or prongs connected to a little "hat". our nicu used an elephant nosed looking thing, but some places use a horizontal tubing that goes across the face. (pictures below.) it's super important that the seal is made with the skin for the pressure to actually get to the lungs. many nurses i talked to said that cpap babies were actually harder to care for than vent babies- if for no other reason than their constant wiggling gives false readings, causing alarms... or their wiggling displaces their "hats" causing their masks to come off and the alarms are real! with the cpap you often here PEEP. the charla version of what i heard is this: peep is what is constantly going.. it keeps the little alveoli open in the lungs, giving the baby a little boost by not having to completely open them up themselves when they inhale. there is also a SiPAP mode that actually gave a burst of air every so often (based on a setting). the regular old CPAP setting doesn't give puffs/like breaths- but is constant.

  • it's important that they rotate the mask/prongs if that is the type of setup you have. the mask breaks down the ridge of the nose, and the prongs.. well.. see the picture below. they don't have to do that... but oftentimes they are over tightened or fitted incorrectly leading to.. some.. adverse results. 
  • always talk to your respiratory therapist (RT).. our nicu's RTs came in all the time, kept records on the babies and adjusted the equipment and made recommendations. they were awesome to explain all sorts of things about how the machines worked, how the lungs worked, how my baby was actually doing in a "big picture" sort of way. they were SUPER helpful. always ask questions.
  • you should definitely be able to hold your baby kangaroo style while he/she is on cpap. it's really not that invasive, and can be easily adjusted if need be. just watch out for the drain tube, i think i dumped water on myself a dozen times!
  • the baby won't be able to breast feed while on cpap. (that i've ever heard of.) they'll still be getting their food through a feeding tube in their mouths (orogastric or OG)... but the next step is the nasal cannula- you're so close!
  • skin protection is of VITAL importance. protection from rubbing, adhesive tapes, tube chaffing, etc... all that is something that you as a parent have to advocate for... some nurses are great about it- some are not. some nicus provide good stuff- some don't. the stuff that wren has on in the "bat girl" picture below is actually puffy and absorbs moisture. (it was designed for wound care.) it makes an awesome padded barrier for her little face and also absorbed any condensation from the machine that might irritate her skin. it basically turned to goo by the time we changed it though. (one of her most FAVORITEST nurses, katie, gave that to her... she'd had some left over from a previous hospital. she's a traveling nurse- they know about all the best stuff!) this stuff is mepilex.. here's a link to the variation that i think it is. there are several different types though. the neos and RT LOVED it when they saw how great it was at protecting her little face!
  • as i said before.. get used to LOTS of beeping on the CPAP. it's just what it is.. and it's nearly impossible to keep that thing on, with a tight enough seal, all the time! between wiggly babies, and mouth breathers (the pressure can be lost when they open their mouths too) there is a lot of alarming going on.
  • if your baby looks uncomfortable, like something isn't the right size, or is on too tight, talk to the nurse, neo, RT, whoever is standing around and have them fix it. (or, if you're comfortable, and they don't mind- you fix it. by the time we left we pretty much did everything.)
  • the purple soothie binky (the size smaller than the green) has the top notched off and works well for the cpap...so does the teeny white micro preemie binky... but the green soothie binky doesn't... so as she got bigger and was still on cpap and needing a binky, the nurses just started cutting the top off the green ones completely. it works great to help them keep their mouths closed.. if the little one is a mouth breather like ours. :)
in this picture i'm pretty sure she's wearing the mask. it's going on a little more straight. from this angle you can also clearly see the two distinct tubes- one for air, and the larger one that drains the condensation.
here's wren in her cpap getup with a sweet bow! some of the nurses were great about "accessorizing" her for my visits. :) honestly , daddy thought it was a little silly, but mommy was so happy to have her baby one step closer to "normal". yeah, bows on the cpap head gear seem normal ok? (in this photo she is clearly on the "prongs".)
this is wren in her cpap getup. you can see the tan little "hat" that she's wearing, along with the elephant nose! the clear tube you can see is actually a drain tube for condensation. sometimes the babies can get that backed up into their tubing and can't get a breath because of the water, so it's important that that tube is running off. she's wearing the prongs in this picture.. which cause her nose to look like:
yes, she's bat girl. believe it or not- it did go back to normal! :)

this is one of the other possible getups for the cpap...i suppose it does make it easier to keep their mouths closed! :) but, it does make it impossible for babies to sleep on their bellies- which preemies love to do. i don't know anyone, that i know of, who has used this kind... it seems like the pictures are few of the ones that look like this. if you've had experience please let me know any tips or tricks to pass along. 

nasal cannula- this is a small tube that offers concentrated oxygen at varied levels based on need. (there is also a high pressure nasal cannula, but we didn't have those in our nicu. it's basically a way to more easily transition from CPAP to cannula.) in order to get on cannula from CPAP you will probably do "sprints". these are short stints on cannula, working out the lungs and getting them to open and close all on their own without any added pressure. we started out just trying it a little.. then before we knew it we were on several 4 hour sprints a day!

  • on cannula your baby's feeding tube can be moved to their nose (nasogastric or NG tube).. they can also start the early attempts at breastfeeding... once they accomplish it there is no reason they can't take all feeds by nipple (breast or bottle) while on cannula. of course, if there are concerns about over exertion that would be a consideration. i should say, there are no logistical constraints to taking every feed by nipple.
  • cannula can dry out the nose, so as part of your baby's cares you or the nurse should give a few saline drops up there to keep it moist... this also can help with hard gross booger clogs. (if the oxygen isn't humidified this is even more important. wren came home on oxygen, and the big tank was humidified, but the travel tanks weren't, so she would get really dried out.)
  • again, with the cannula, there are lots of different adhesives and sticker combinations to attach it to the baby's face. always try to get them to use duoderm (it's an understicker that's easier to take off. they attach the duoderm skin, then the cannula stickers to the duoderm.) these are pretty important because if they've found their face at all, they're going to be trying to pull that thing off their face.
here you can see the cannula and the stickers that held it on. they were actually one piece, designed to go under the nose of a much larger person... but we cut them in half and attached them by her ears. :)

here's the NG tube up the nose.. hard to believe there's actually room- but there is.
here's a close up of the cannula. always make sure they've picked the right size! a larger tubing will require less flow, so it's good to get a comfortable, but larger sized tube if possible. you can check with your RT if you're uncertain. sometimes they just use what they have on hand, what's convenient, or what's available. they may need to actually go through some channels to get the proper size.

here we are... 3.5 months post nicu... and the oxygen is just old hat. but that's for another post called "oxygen at home"... coming soon! :)


easternsparkle said...

Thanks for sharing this - I hope future parents will find it helpful you've put a lot of effort into it - you deserve that manicure! Thanks for dropping by my Ramblings ;)

Tracy said...

Wow I had a preemie 19 years ago only 7 weeks and did not need so much what a journey you are on

JDaniel4's Mom said...

I am so grateful my son didn't have to go there. One of my sister had two children that spend time there. It was hard to see the little ones with tubes.

Viki said...

Wow, that's a lot of stuff. I had a preemie who had to have an operation the day after he was born. I didn't get to see him for 7 days. I was in another hospital. I don't think he needed all that stuff though because he had pretty good lungs. It was heartbreaking when I did go to the childrens hospital and saw all the babies. Glad your baby's home.

Little M and Baby G said...

I've got one more for your list: High Flow, Humidified Nasal Cannula

It's between the c-pap and the cannula. It gives off warm, moisturized air. Grey was put on to that when he started having trouble on just the cannula, but not so much they wanted him back on the c-pap.

The problem with it is the water condensates in the tubes and if he wasn't properly elevated he'd get a spray of water up the nose.

Great info!

critical crass said...

my nephew couldn't breathe on his own when he was born. his lungs were fine, but the mechanism in your noggin that tells your lungs to work, that wasn't. so they had him on some tube that would send a little puff of air into his nostrils.

i was so, so worried for him.

and then i saw this...my god, you must've been terrified.

i'm SO glad she's home, though, and go through it. yay!

and this, this was a lot of effort. wow.

laterg8r said...

great info TFS :D

MoDLin said...

I am so impressed with this post. There is a ton of great information for parents here. Thank you so much for working incredibly hard and sharing this with us.
The photos of your daughter are amazing. What an adorable chunk of love she is today! I'm very happy for all three of you.

Christy said...

I couldn't read all of this, brought back some very sad memories. But I wish oh how I wish I had read something like this before I spent 4 months with a baby in the NICU.
Thank you for taking the time to put it all together.

Keri "The Coupon Lady" said...

Oh my goodness! What a journey you are on! My son was born at 32 weeks and stayed in the NICU for 4. He is almost four and perfectly fine, but I still cry my eyes out when I think about what we went through. Your previous post about guilt really caught me too. Its something that nobody talks about and I think you are very brave.

Rocky Mountain Woman said...

My youngest spent a few weeks in a nicu and I was too worried to ever really look around. Thanks for the tour...

Tina said...

Great work there. My Jake was in NICU for five days when he was born, and it was a totally scary time. It would have helped to have been educated ahead of that. He's now 13 and fine (I posted about it for J, Just Call me Jake if you want to read the story).

Sara B said...

Interesting post, even I learned something!

Marino had that last kind of CPAP.If you check out the picture I have on my blog above "Who is Marino?" you can see it. I didn't even realize there were other kinds!!

Jenny said...

What an informative post.

I admire you for writing this with everything you're going through.

I've always thought that it helps to help others while you're trying to survive something so catastrophic.

I admire your courage.

Welcome to Alphabe-Thursday, sweet lady, and for taking the time to write this invaluable post.

I hope it doesn't come across too light for me to post a grade but that is what I do each week.

And you have an A+.

And a hug.

Betty (picture circa 1951) said...

I just can't imagine a tiny baby with all those wires and tubes. I had no idea.

Julie Schuler said...

What a great thing you are doing, to educate people about what to expect. Much of it must be very shocking to parents who end up there, unexpectedly.

Melinda Cornish said...

I went thru this when my own son was born......it brings back some memories......I wish you all the luck in the world and enjoy your baby! Melinda