NICU Survival Guide

No one plans to have a premature baby. No one gets pregnant and sets out to have their baby early. I hope. You plan your nursery, you plan the birth, you plan the coming home… and then something happens that throws all those plans out the window. Babies are good that way.  Some moms have a little warning that their baby is coming early and others, like me, get about 5 minutes notice before they are knocked out and then wake up a mom. We read books and websites and blogs about pregnancy and birth and new babies but none of those prepare you for your baby’s early birth and stay in the NICU. While we had a pretty “easy” time of it as far as NICU stays go, it still would have been nice to have had some form of guide book or tip sheet to help us feel more prepared. So I thought I would put together a list of things I wish I would have known or that I think are important. These aren’t necessarily in order, by the way. I’m definitely not organized enough these days for that.

  • 1) Since you probably already have determined if you are going to breastfeed or not, make it clear what your decision is and what you will and will not allow. This primarily affects breastfeeding moms. Most NICUs will advocate for breastmilk and you will get the use of a hospital pump. Baby G had a feeding tube for all but a few days of his NICU stay. Towards the end he was getting his feeds from breast, bottle, and tube until he got enough stamina to do all his feeds from breast and bottle. We knew that in order to go home, Baby G would have to be doing all his feeds without use of the tube so that meant bottles when I wasn’t there. Since I had always planned to EBF (exclusively breast feed) this upset me but I understood the need. I found out about two weeks in that they expected him to go home doing half his feeds by bottle. This meant more pumping for me. *sigh* But I’m glad I found out then and not right at the end. I also had them wait on bottles until breastfeeding was established. This might have extended our stay a little but it was important to me for breastfeeding to be what he did first.
  • 2) Find out the hospital’s philosophy on touch, kangaroo care (skin-to-skin holding), and parent involvement with baby’s care. This is important. You need to know specifically what they believe and what their expectations are. If they allow touching (hand-hugging) find out when this is allowed and what circumstances would prevent you from doing so. How often do they recommend/allow kangaroo care? Are the parents allowed to be involved in general care (diaper changes, baths, etc). Touch is good for your baby. Kangaroo care is very beneficial for you and the baby.
  • 3) Ask for a tour. My husband got a tour the first night but it was several days in when I got mine. What are the different areas/rooms, what is the progression through the NICU, is there a specific waiting room, is there a lactation room or can you pump bedside? Are there lockers for personal belongings?
  • 4) Find out about what days they do what and when they will be ready for certain milestones. When is bath night, when do they get to wear clothes, when do they get to be held by someone other than mom/dad? That way you can be prepared. Also find out what you are allowed to bring in. We brought clothes, hats, blankets, a boppy, my robe, etc (I used the robe for kangaroo’ing). Make things as homey as you possibly can. I even had a drawer of snacks.
  • 5) Take lots and lots of pictures. We took pictures every day for 38 days. They change so fast and have so many milestones and things term babies don’t have. Get pictures at weeks and/or month milestones with something constant to show size (stuffed animal, toy, etc). We didn’t do this and I wish we had. Get pictures of their beds and all the apparatus. If nothing else, I think Baby G will want to see where he spent the first 5 1/2 weeks of his life.
  • 6) Get into a routine. I went to the hospital every day and spent most of the day. But I had to figure out pumping, showering, puming, getting dressed, eating lunch, packing dinner, pumping, driving, etc. So we finally got into a routine of when we’d wake up and how we’d do stuff in order to get us to the hospital around the same time every day. It helped things feel more “normal.” And helped us get there on time.
  • 7) Speak up. YOU are the parent. Don’t forget that. Yes, there are other people taking care of your baby at this stage of the game but ultimately YOU will be taking them home. The hospital may have helped them be born and be helping them live, but you gave them life. If you don’t understand something, see #8. If you think something is wrong or needs to be changed see #9. If you want to be more involved (#9) say something. You should fully understand the situation in which you’ve been placed and you have the right to tell someone when you feel something isn’t right or you don’t understand it.
  • 8) Ask questions. Again, this is YOUR baby. Sometimes the nurses/doctors get into a routine and sometimes forget there are people (parents) running around that are scared and confused and don’t understand the terminology or what all the tubes, wires and machines are. Ask if there are pamphlets of info. Go to (general info) or (glossary of terms). Educate yourself but still don’t be afraid to ask fifty million questions. It’s your right. And you’re paying to be there anyway.
  • 9) Get involved. Do whatever they will let you do. We could change diapers, take his temperature, change his pulse-oximeter from foot to foot, bathe him, etc. But we didn’t start out being able to do these things. It took some time before I basically took it upon myself to do them and stop asking or waiting for them to offer. This was MY baby. Why shouldn’t I change his diaper or take his temperature? Some nurses would assume we would do these things and others wouldn’t even offer. With those nurses I basically just stepped in and took over. If you were home you’d be doing these basic things so why not get in some practice when all the supplies are free?
  • 10) Speaking of free supplies… take whatever they will give you. When we left we got whatever was left in his bed. Diapers, wipes, nose bulbs, baby soap, etc. Stock up on whatever you can. Again, you are paying for it. Also, our NICU tossed anything that hit the floor or was considered “disposable.” We snagged a paci or two that went on the floor and brought them home and disinfected them. They don’t have the time or the resources for this stuff but I’m glad we did because his preemie paci was the only one he’d use for the first 6 weeks he was home. And you can’t buy them anywhere. Get as many as you can.
  •  11) As soon as you are possibly able, get your baby’s footprints and handprints. Our NICU did not do this automatically. He was several weeks old and over a pound heavier when we finally got his footprints. He was home before we got his handprints. I wish I could have gotten them earlier. If you can, get them multiple times to show growth. If they won’t do it, do it yourself.
  • 12) Preemie clothes. Don’t go crazy with buying preemie stuff. They grow out pretty quickly but you will want some things for them to wear in the hospital. Baby G got his first clothes about a week in but was only allowed to wear t-shirts or onesies (no pants or footies) due to his PICC line for the first few days. Pre-wash a few things with dye-free fragrance-free soap. Also, hang dry them. 100% cotton baby clothes shrink and you want to get as much life out of these as possible and don’t want them to draw up. When they are ready for footie PJ’s (one piece) go for the snap up kind, not the zippered ones. That way there are multiple holes for the many cords and line to come out of. Label the insides with your baby’s name and designate a place in the area for dirty clothes/linens so the nurses know where to put them for you to take home. We found Carter’s stuff to fit the best (with the exception of some of their hats) because they are longer and slimmer and have longer legs than some of the other brands.
  • 13) Baby Gear. Not all carseats are rated for tiny babies. Ours (luckily) was rated for 4lbs and up. Make sure whatever carseat you have or have picked out can handle a tiny baby. We also found that removing the shoulder pads that came on the carseat helped the straps stay on his tiny shoulders better.We have a pack n play that Baby G thinks is a torture chamber. So he sleeps in a swing or a bouncy seat that looks like a bassinet. Preemies often have reflux so sleeping on an incline also helps. I read on several online preemie groups that people had very good luck with this: G does really well being swaddled at night so we have Swaddle Pods and swaddle blankets we use every night.I bought a car seat cover (not this one but similar idea which is great for when they come home and you have to go out. Keeps people from getting too close because you can cover them completely. They make winter versions too that are warm and cozy. I highly recommend one of these.Most infant carriers (ones you wear them in) are rated for 8lbs and up. Baby G came home at 5lbs 6oz. The very best carrier I have found so far is a Moby wrap. They look hard to use and take a few tries to get it right but it is by far my favorite way to carry him. It is secure and holds them nice and tight. Baby G will sleep for hours in it and I don’t have to support his head or worry about him falling out. Something else I highlyrecommend. There are about a jillion youtube videos showing you how to use them too. I prefer the folded method. Which will make sense if you get one.
  • 14) Keepsakes. Snag whatever you can from the hospital that shows their size or stay. I snagged his first paci (tiny little thing), a preemie diaper (he came home in newborn diapers), his blood pressure cuff, his first hat, his C-Pap hat, his bili-shades, etc. I plan to do a shadow box of all these things. Again, just things I think he will enjoy seeing when he gets older. And I’m sentimental. And a little bit of a pack rat.
  • 15) Baby book. I found a baby book online that is specific to preemies. It has extra info that normal books (and term babies) don’t have. It was created by two NICU nurses and you can find it at
  • 16) Keep a journal. This can be a journal for you, for your baby, of the stay… whatever. I wrote down everything that happened. I also was given a journal by a friend to write down my personal thoughts and I chose to use this to write to Baby G. Now that I’m home I haven’t written in it much but while we were there I wrote in it often. You need an outlet for all the things you think and feel. Writing them down is a good way to do it. It also helps you remember those early days that seem to blur by.

This is all I can think of for now. I’ll do another post about what to expect when your baby comes home. But it’ll have to wait. I’m still pretty sleep deprived so it takes me awhile sometimes to formulate coherent thoughts and then transcribe them grammatically and with correct spelling. I do have an infant you’ll remember.

A Typical Day

Once I made it home from the hospital we had to figure out what our plan was and how we planned to get ourselves together and to the hospital. It never was a question of IF we’d go to the hospital, it was just more of a question of when. For the first week or so I was pumping every 2 hours during the day and every 3 hours at night. Mostly. When I didn’t sleep through my alarm. Later on, after talking to one of the lactation consultants, I would do one 5 hour stretch which seemed to help. When I didn’t sleep through my alarm. So trying to pump, get enough sleep, pump, get dressed and get our stuff together, pump, and get to the hospital took some time to figure out. Especially since I was staying late at night in order to spend time with TJ since he came up after work. Spending so much time at the hospital left little time to get anything done at home. We tried combinations of things to help us get out of the house faster but it took us several weeks to figure it all out.

At some point we finally got into a groove of sorts and pretty much spent our days in the same way. This really started to happen mostly in the last pod in the third room. We would get up around 9am and I would pump and then jump in the shower. We’d pack dinner for that night and gather up all our necessary items (camera, blankets/clothes, lunchbox, Bubba Keg, netbook, phone charger, etc) and leave the house sometime around 11am. Mom would drive and I’d put my makeup on in the car to save time. The goal was to get there in time for his noon feeding. Most of the time this was accomplished. Due to my weight restrictions from the C, Mom carried most of our stuff up to the 4th floor. I’m sure we looked like we were moving in every day. We generally got a locker to hold the lunchbox so it would be one less thing to carry in. We managed to only semi-lose the key once as TJ took it home with him once on accident. Good thing they had a spare. Once we got there, we’d do his assessment if the nurse hadn’t started it yet and I would sit down to feed him. A nursing session could last up to an hour with him starting and stopping. I struggled to keep him awake a lot due to his low energy from the anemia. Then I would generally pass him off to Mom to hold upright after he ate to help with the reflux and I would pump as he was generally wasn’t taking from me but about a third of what I normally produced.

After his lunch we would head down to the cafeteria to eat. We started out bringing lunch and dinner up to the hospital but it just got to be too much to pack and carry. So we opted for salads from their salad bar and really enjoyed them. We learned to bring our own dressing; one, because they didn’t have anything tasty and low fat and two, because the dressing added to the weight of the salad. Most days we split a chicken breast in order to get some protein and every now and then got another goodie like jalapeno poppers, a quiche, or a pot pie. Unfortunately the tastiest things we found they only had once while we were there. After lunch we’d head back upstairs where I’d pump (yet again) and then most days I’d kangaroo with Baby G after his 3pm assessment. TJ would get there around 5:45 and he’d sit with us until the NICU closed down for shift changed. I’d pump again and then we’d head to dinner. Most nights we’d eat leftovers (unless there was something particularly wonderful in the cafeteria – which wasn’t often) and then head back up after dinner. TJ would kangaroo with him some nights and then I’d attempt to feed him again at 9, after his assessment. During the 9pm one he would get weighed and I’d change his clothes. After he nursed (or attempted to nurse or slept through the attempted nursing) I’d pump again and then we’d leave. TJ would have already left by that point to go home and get ready for bed. We’d get home, get our stuff together, I’d pump, and we’d be off to bed. This was our schedule for the last 2 1/2 weeks Baby G was there with only a few exceptions. There were errands to run and things to get accomplished that I knew wouldn’t be a possibility once he came home. But once he started nursing I was always there for his noon and 9pm feedings. It was important to me to be able to do that.

It’s funny… the days seemed to go by quickly even though time seemed to drag on. It’s hard to explain but sitting there with him seemed to pass by at a good pace even though our overall stay seemed to last forever. I felt like it would never end. I felt my life was on hold. Everything should have been suspended while we spent our days watching monitors and hoping our little guy would come home. Nothing outside the hospital seemed like it mattered or seemed real or fair. Why should we have to deal with insurance or bills or paperwork? Our child was living in a hospital attached to tubes and monitors – nothing else seemed relevant.

NICU Day #36

So Wednesday is the day! Baby G passed his hearing test today, will have his carseat test tonight (praying he passes on the first shot!), will be circumcised tomorrow, and tomorrow night Husband and I will be “rooming in” in the hospital with a monitor-free Baby G. I find this equally wonderful and terrifying. Basically we will stay in a room like the one I was in during my stay and we will spend our first night with him here just in case we have questions or need help. Then Wednesday morning we will get all our discharge information and be homeward bound!

He is still eating well (except for tonight so far as he has been passed out since his bath) and gained 1.2oz since last night (which is good because he had only gained .2oz the previous night and they don’t like that).

I can’t believe this is finally almost over. I can’t believe I will finally be able to bring my sweet little boy home. Mom and I cleaned house today and the pack ‘n play is set up in my bedroom and the swing has been brought downstairs and set up in the living room. I ordered my pump today and should get that on Wednesday. Everything is ready for him to come home! God has been so good to us and has blessed us so immensely. The next hurdle will be figuring out how I can stay home until Sister comes in July. My leave runs out May 14 so I will be out of work another 2 – 2½ months until she comes. Husband and I are ok with this but I will have to see what work says. I’m a little anxious about that so please pray they are understanding and do not give me too hard a time about it.

NICU Day #35

Today when we got to the hospital, the nurse told me that Baby G had started stirring around so she went ahead and got him ready for me (changed his diaper, took his temp, etc). When I flipped back his blanket to get him out I noticed his pulse-ox was not on. I mentioned it to the nurse and she said they had written the order that morning to remove it later on today, depending on how he did. She said that he had taken all his bottles from midnight to 9am this morning and was now allowed to feed on demand (to an extent).

After nursing him for about 10 minutes or so I put him back in his bed and turned around to say something to TJ. When I turned back around just a few seconds later he was laying there so sweetly with his NG tube completely free of his nose. So the feeding tube came out a little earlier than expected. He ended up getting a full feeding from me at noon.

As I was nursing him, the NP came in to talk to me and basically said that Baby G was on the fast track out the door. As long as he continues to eat, gain weight, and doesn’t have any bradys he can be going home sometime this week!!!!! We will bring in his carseat for the carseat test tomorrow and as long as he passes that he won’t be here much longer. After his heartrate drop yesterday I’m super nervous about him having a brady (even though he hasn’t had one in ages) because it means another 5 days here. Please pray with all your might that Baby G does all the right things and is ready to go home soon.

NICU Day #34

Last night Baby G weighed 5lbs 1.1oz. Yesterday he had a great day as far as feeding goes. When we got there at noon there was a note on the board from Nurse R(his nurse from the night before) written from “Baby G” letting us know he had a good night and that after Nurse Rhad fixed his wiggly tube (which he didn’t even complain about) he slept much better. She also let us know he took all his 6am bottle in only 15 minutes. Then we found out he also took all of his 9am feeding by bottle. He nursed at noon and took most of the rest by bottle but since we didn’t know exactly how much he’d had from me we just let him be with that amount. He was done eating so we didn’t push it. At 3 he took 35 out of his 45ml and at 6 he was zonked out so he got fed by tube. At 9 last night he was super alert and latched pretty quickly, nursing for almost 30 minutes not including his little breaks. Then he took the rest of his feeding by bottle very well. He is coming along and I can see the light at the end. It feels like it never gets any closer though.

Today we are going to be there for all his feedings from noon to 9 so I can see how he does. I have a feeling sometimes they are not giving him enough time to wake up at assessment times. Also I think the volume they are giving him is sometimes more than he wants. They base his volume off his weight but term babies eat until they are done, not until they have finished all recommended ounces of liquid. So we’ll see what he does today and how he acts. I’m going to push to allow him to feed as much as he wants and then to leave him alone (food-wise) until he is ready to eat again.

Yesterday Mom and I went up at noon and then left to run some more errands and work some more in the house. Mom made noodles to go with the Kalua Pig she made the other night (most of our food is made in stages these days) and worked on some pictures for me in between cleaning up the kitchen and other various things. In between my ever so frequent pumping sessions I put away a bunch of stuff in Baby G’s room and did several loads of his tiny laundry. A little more organizing in his room and that part will be finished. I still have some things to put up on the walls, but his room is coming along nicely. I can’t wait to bring him home to show him. And then whisk him away to his pack ‘n play in my bedroom.

{Evening Update}
Baby G is up to 5lbs 2oz, but after his super full diaper this evening (after not having a poopy one all day) he probably wasn’t weighing that anymore. The very good news is he got a full feeding nursing tonight! Technically he only got 38 out of his 45ml but he drank until he was full and was awake but not interested in any more. So as far as I’m concerned that was a full feeding. He’s not going to want 45ml every time he feeds consistently.

I did get a scare around 6pm when I was holding him while his feeding was going. I heard his pulse-ox alarm go off (which is does very very frequently due to the sensitive monitor even though it’s generally not a real reading) and happened to glance at his heart monitor and his heart rate was dropping fast. It made it down to 80 (which is the threshold for a brady) as I was sitting up with Baby G and rubbing his back. It never alarmed (which would have meant an automatic 5 more days in the NICU) but it scared me to death. He had one other issue with his heart rate dropping low on Thursday but it never made it below 100. That time we are pretty sure was caused by reflux and I’m guessing tonight was too but that didn’t help me from being worried about it. Once he’s home he won’t be attached to any monitors that will tell me if he’s stopped breathing.

On a more fun note, Baby G got his big ole feet printed tonight. One of our nurses tried last week but we wanted to give it another shot. He’s so relaxed that his little legs and feet were stuck out the whole time. He did so good with it. Tomorrow we’ll aim for handprints.

As I was cleaning up, Mom caught Baby G trying to pull out his feeding tube again. So I pushed it back in and he lost his hand privileges again. Because he was wearing a onesie without little hand flaps, Baby G is now wearing a bootie on his right hand. He will be the laughinstock of all the NICU babies. At least he doesn’t have to wear a long-sleeved baby t-shirt as a pacifier holder like Big Baby.

Big Baby is a very large term baby in the Intermediate room where Baby G is. He had to have been 12 pounds at birth at least and cries ALL the time. We’re not sure what’s wrong with him or why he cries so much. He sits in a swing a lot and apparently isn’t great about keeping his paci in so they improvised a way to keep the paci held in his mouth. It’s a long sleeved baby t-shirt rolled up and tucked around his head. The t-shirts are also used as neck rolls. The NICU nurses are very resourceful like that.

Pray like mad that we get to go home soon. His last Epogen shot is tomorrow night and we’ve already seen an increase in his energy level but he still has a ways to go. He just has to prove he can eat all his meals. On Monday I plan to talk to the Dr or the NNP to find out when we can allow him to eat on his own schedule instead of theirs. Instead of 45ml every hour there should be an option to eat Xml per day or a larger amount over a longer period of time to take into consideration his own hungry tummy. Hopefully they will be responsive and work with us. I’m tired of being there and I’m tired of leaving my baby every night.

NICU Day #32

Baby G had a rough night tonight and I did as well. We went ahead and did his bath before his 6pm feeding in the hopes it would not tire him out for the bottle as much as it tired him out for nursing. He did well with his bath as usual, but after he was dressed the nurse had to redo the Tagaderm on his feeding tube as it was coming off. The problem is the stuff is so dang sticky and I don’t think they take enough time taking it off. He cried and cried, sounding terribly distressed, almost to the point of screaming. I’ve never seen him so upset. The few times I’ve seen him upset paled in comparison to tonight. I also have never seen his little lash line wet with tears either. I managed to hold it together until the nurse left his pod and then started crying as I held him. He stopped crying pretty much after she was done but he was so distressed I had a hard time dealing with it and he clung to me once I was able to pick him up. I ended up sitting down with him and nursing him for about 10 minutes before he fell asleep.

Tonight after shift change he was asleep but restless so I picked him up and held up on my chest until it was time for his assessment. Even though he was still and asleep while I held him, he kept making squeaking/groaning noises (they are hard to describe) that he makes every now and then, but he was doing them almost constantly. During his assessment he did ok – he was a little fussier than normal – but when I sat down with him to nurse he just wasn’t interested. He laid in my arms and looked around and at me but didn’t seem to want to nurse. He managed at one point to get his finger up by his tube and yanked it out again. At least there wasn’t milk pouring through it at the time. So on top of his Tagaderm incident from earlier he also had to have his feeding tube shoved back through his nose.

I finally laid him back in his bed thinking we would just try a bottle when he started rooting around. I picked him up and got him to latch while I was standing at his bed so I sat back down with him and he nursed for about 10 minutes. Honestly, I needed him to nurse tonight. I needed to be close to him and to give him some comfort. Mom tried giving him a bottle after and he just didn’t care. He kept shoving it out of his mouth. We finally had Nurse R hook up his feeding tube. Mom held him while he was fed (I had to pump. I always have to pump) and he still seemed pretty restless. At one point she became worried about the strange noises he was making and the fact that he just didn’t seem to be able to get comfortable. He made a little choking noise and his pulse oximeter went off (which is does ALL the time) but when we looked at his heart monitor his heart rate was dropping fast. It got down to 108 (it’s usually in the 145-170 range) pretty quickly and as I was calling for his nurse, Mom moved him out from her chest to look at him. Before the nurse could respond his heart rate started back up again but we were both a little freaked out by it. He had a little milk at the corner of his mouth so it’s probable that he was having some reflux and just couldn’t resolve it before it dropped his heart rate. After his feeding was done he seemed to settle down and relax and sleep.

When I got him back into bed right before we were getting ready to leave, I noticed his tube was sticking out some and was 2cm out farther than it was supposed to be. Nurse R said this could have caused some of his later discomfort as it might have been moving in and out when he breathed or sneezed and if it wasn’t in his belly in the right place it could have been irritating him there too. Later tonight she will have to remove the Tagaderm that just got put on to push the tube back where its supposed to go and retape it a little better.

He did reach 5lbs tonight but he didn’t have a great day as far as nursing and bottle feeding went. I truly hope tomorrow is better for him. I hate seeing him in distress and I hate leaving him there after a rough day. Please pray for his continuing progress and pray he gains ground quickly. I desperately want to bring my baby home.

NICU Day #31

Last night Baby G took almost half a bottle at midnight and then a full bottle at 6am. He nursed at noon, getting around 20ml and then was too sleepy to finish it off with a bottle so the tube it was. He was still asleep at his next feeding (which meant our estimate of how much he got from me was pretty accurate) so it was the tube again. Husband gave him another bottle at 6 and he drank the whole thing. He breastfed again at 9, taking another 20ml or so and then was able to stay awake and finish his feeding by bottle again. The faster he can add bottle feeds to his day the faster we can go home!

His weight tonight was 4lbs 14.4oz, which was only up .4oz from last night, which was only up .4oz from the night before. His slower gain is probably due to all the extra effort he is expending to take his meals from breast and bottle. Hopefully they won’t hold this against him. The took him off the Pro Pass the other day partially at my request, and I think that is actually helping him be more interested in eating. He needs to be hungry and showing cues for them to bottle feed him during the day and at night when we’re not there. I also think this is helping his reflux and his belly.

Speaking of his belly… In addition to the Epogen shots, Baby G is getting iron through his feeding tube twice a day. It works in conjunction with the shots to help boost his red blood cell production. It also makes his poopy diapers stink to high heaven. It’s enough to gas you out of the room. I am looking forward to him getting off the iron simply to make changing his diaper less heinous. But on the positive side, he is pooping more regularly and his belly is much softer and more relaxed.

Normally when I nurse him it takes him a few minutes to latch on. He generally likes to look around first and see what’s going on before he settles in. His little hands like to help him get situated and he wiggles and warts around until he is ready to nurse. Once he gets latched on pretty well (sometimes it takes him a few tries to be ready) his hands and body relax and he snuggles up against me. It’s the greatest thing and I love that I have that with him. He generally nurses for 10-15 minutes before he starts to fall asleep at which time I will pick him up to burp him. At least half the time he lets out a big burp before I even get him upright. Nothing like a baby that burps himself. Then, if he’s still awake, we’ll try again and often he will nurse for another 10 minutes or so. He’s gaining more longevity in his sessions and also seems to be transferring more milk faster. I pray this will continue so that his nursing sessions will be shorter and more productive. This will also help him head home faster.