Going home with small or premature baby? - Mothering Forums
NICU & Preemie Parenting > Going home with small or premature baby?
sbrinton's Avatar sbrinton 03:32 PM 12-04-2008
I'm really excited Zephan's doing well, but when the doctor told me this morning that he'll probably be going home in a week, I am feeling a little nervous.

Zephan is 33 weeks 5 days now and weighs 4 pounds 5 ounces. If he goes home in about a week, that would mean he will be 34-35 weeks and will weigh less than 5 pounds.

Anyone been there, done that?

arizonawillow's Avatar arizonawillow 03:48 PM 12-04-2008
I burst into tears when the physician's assistant told me my baby would be going home from the NICU in about a week. It totally freaked me out. I said, "I had to get ok with her being here, now I have to think about taking her home?"

Do you know if you'll be using an apnea monitor with your baby? We had to be trained on a home apnea/heart monitor and then room in at the hospital with the baby on the home monitor for 2 nights. The PA had told me that I would be comfortable bringing her home after that experience, and I was. The monitor was really reassuring.

She was 4 lbs 11 oz when we brought her home and we had to get the (lame) Assura car seat from the hospital when because she was too small for the Graco infant seat we had from the last baby. Oh and she was, hmm, between 34 and 35 weeks when we brought her home.

Feel free to PM me if you want or I'd love to chat about it more with you here.

tntmom's Avatar tntmom 04:08 PM 12-04-2008
I was terrified to bring home my son after being in the NICU for over a month. He was about 34 weeks when we got to leave. He had just hit the 5lb mark. We didn't come home on any monitors. I don't know it that was a blessing or not. We didn't have anything to "know" that he was okay. However, I actually believe that made me learn what was normal for my little guy faster.

Congratulations and enjoy your little one!

aquamam's Avatar aquamam 04:44 PM 12-04-2008
First off, congrats that your baby is doing so great! Home at 34-35 weeks means you've got a real tough cookie there

I brought mine home at 36 weeks, and 4 lbs, 1 oz. We were able to use a Peg Perego infant car seat, all extra padding, headhuggers etc removed, wedging babe in at the sides with rolled up receiving blankets and supporting the head with more rolled up blankets. We did have to pass a "carseat challenge" - sitting babe in the carseat for an hour with monitored breathing. The NICU nurses showed us how to make our carseat safe for wee ones.

We were first time parents, and pretty nervous for the first 3 days or so. But she mostly slept and fed until her due date, so we got into a routine pretty quickly. Looking back, the routine was great while it lasted

Not even NB clothes fit so we mostly did swaddling with the smallest onesies we had for the first while.

My concern was germs from others so I was pretty militant about handwashing etc with visitors.

Enjoy your little one!
mommylovesra's Avatar mommylovesra 02:36 AM 12-05-2008
Raleigh and Randall were both around the 4lb mark when I brought them home. I did not feel nervous at all honestly just mega relief at getting them out of the NICU. Congrats on Zephan doing so well. You will definitly need some preemie clothes for a month or two just relax and enjoy him when you get home. It does take a little extra patience with feeding but they get the hang of it fast and we practiced co-sleeping from day one with no problems either. Celebrate don't be nervous.
skylarsmama's Avatar skylarsmama 11:59 AM 12-05-2008
Addison was 4lbs. 5.3oz. and Riley was 3lbs. 13oz. when they were discharged. Mine both came home on monitors and I think that made it harder. It was such a relief to have them home though. I had been so used to handling them in the NICU that it wasn't much different at home.
Congrats on bringing your little one home!
sparklett's Avatar sparklett 08:32 PM 12-05-2008
All of the advice above is GREAT!

Get the name of your LLL or a local lactation consultant and keep that number close by. You might need some extra help with BFing.

Jack didn't go home with an apnea monitor, but we were very dependent on the monitors while in the NICU. One thing we did when we got the going home notice was to ask to have the monitors turned off every so often so we could start caring for him without the additional "help" of the monitors. It was soooooooo weird to hold him without any wires or lines, but it really helped us build confidence.

Also find out what their suggestions are re: sleeping arrangements. Do they think he should sleep on a slight incline? If so, you can buy an incline sleep positioner or just prop up your bed/co-sleeper/crib.

Start thinking about what you want to tell friends and family. EVERYONE will probably want to see Zephan, but you may find that you would rather spend the next few weeks settling in.

He'll probably have to pass the car seat challenge. Check you car seat to see what the baseline weight limit is, and plan for a car bed if needed. Our hospital recommended that everyone who was caring for Jack, take a CPR class. So my mom and dad and MIL all took the infant CPR class.

It's so great that he's going home soon!
sbrinton's Avatar sbrinton 06:52 PM 12-06-2008
Zephan's had some significant desats after feeding. Sort of funny, because he's been breastfeeding pretty huge amounts (50-60 cc when his full feeds are 37!). The big volume of milk iss probably causing reflux that is causing his O2 saturation to fall. And he holds his breath way too long when he's pooping.

I guess all of this is normal and the neonatologist is generally relaxed and amused that a barely 34 weeker is bfing so much. All of that has bought us a few more days, at least until Thursday. And that feels okay. I think by next weekend I could be ready.

We've been shopping for preemie clothes and we have the right carseat ready to go. We'll do the carseat test sometime before we go home. We've already taken infant CPR in the NICU and we have our "getting ready to go home" checklist up in the room. He has a few more tests to do here, but basically things are ready.

Any advice on where he should sleep at home? At this point, we have a crib in his bedroom but would rather have him in our room for the first few months. We will buy or borrow something.

Craddle? Bassinet? Has anyone tried an amby baby? He's sleeping on a little incline in the NICU and seems to really need it to keep his milk down, so the Amby is really interesting.
aquamam's Avatar aquamam 02:06 AM 12-07-2008
We did our room - mini co-sleeper - LOVED IT! BFing at night was a breeze, plus I loved having babe so close to me, but not interfering with my sleep. Also used the angel care monitor for added peace of mind. You could put it on a bit of an incline with books or pillows etc.

The minis can be wheeled around (good if you're on one floor as we are) - full cosleepers convert to pack and plays later.

Congats on Zephan's great progress! And cool name btw!
sparklett's Avatar sparklett 02:49 AM 12-07-2008
Sorry to hear about the desats. Just his way of showing you that he needs a bit more time. And it's so great that he's BFing so much!

Jack would desat on a bottle and once we changed to EBF he did great. He did develop a bit of breastfeeding apnea shortly after coming home. Just one extra thing to watch out for.

Jack slept in a cosleeper on an inclined positioner. Worked like a charm! You could sidecar your crib to the bed to get the same effect.
sunflowers's Avatar sunflowers 06:05 PM 12-07-2008
My dd came home a few days before her due date and weighed 4lb12oz. Not too awfully tiny but still tiny!

I was most concerned about her in the carseat (even though she passed the carseat test) since I couldn't really see her well to know if she was breathing OK. I'm a single mom and had to drive home by myself with her in the backseat... I kept freaking out every time she got quiet so I'd yell back and make her wake up! She cried half the ride home from the NICU and it was probably the only time it made me feel OK about her crying

As far as the first few weeks home, I felt a little bit like we were still in the hospital. I tracked her diapers, her temp, her weight, ect. I sat with her every single minute for at least 2 weeks while she slept. She was a grunter so if she got too quiet, I'd wake up and check her. It really paid off when her reflux got really bad and she actually began choking/ not breathing as she slept. She ended back in the hospital for the refluxing after a month home. She slept in a cradle and I elevated the cradle mattress with those Freddie Frog positioners and it did help.
PE&M's Avatar PE&M 06:35 PM 12-07-2008
I completely understand your feelings. Molly is a 27 weeker. She was set for discharge at 35 weeks. 3lbs 5oz. I was so nervous. The night before she was to come home she stopped feeding cold turkey. She wouldn't nurse or take a bottle. She ended up staying another 9 days. We both needed those 9 days. When she came home I felt like she was really ready.
justmama's Avatar justmama 11:05 PM 12-08-2008
My 34weeker came home at nearly 36weeks and 5lbs 5oz and my 33 weeker came home at 35weeks and 4lbs 8oz. The 34weeker came home on an apnea monitor so that was REALLY helpful and eased my mind a bit for times like when i wanted to shower or when I needed to put her down in the cradle. It was extremely infrequent but it did happen and the monitor was helpful. My 33 weeker came home to a crazy loud house with two big sisters and one in school and a single mom so the poor thing got tossed in the sling and dragged through her days of walking to the bus stop zipped in my jacket and going grocery shopping in my jacket, etc. Poor thing. But yeah, it was a lot of sleepless nights. But co-sleeping and breastfeeding and babywearing are all wonderful things for preemies and it makes YOUR life a ton easier. The hardest part is the pumping(i had to pump for both my girls) and the germ protocol.
sbrinton's Avatar sbrinton 01:25 AM 12-09-2008
We're a few steps closer to being out the door.

Zephan's up to 6-7 out of 8 feeds by breast. He pulled his gavage tube out and we're going to see if we can keep it out. The doctors and nutritionists are putting together the "going home" feeding plan. On Tuesday, we'll go ahead and introduce a bottle or a SNS, as the plan is to fortify a few feedings every day. We'll also do the carseat test.

I think I've decided I'm okay with 1 bottle a day. I function much better if I get one longer stretch of sleep, so we're going to let daddy do one feeding at night (we can fortify this one).

I'm feeling less nervous about having him home and more ready. I've been at this hospital since October and I'm ready to be home.
mommylovesra's Avatar mommylovesra 02:30 AM 12-09-2008
FWIW I never used fortifier at home with Randall. He was born at almost the exact gestation and weight as Zephan. He was 31 weeks and 5 days and 3lbs 11 oz when he was born this past May. I did supplement one 2&1/2 oz little bottle of pumped milk a day for a few months until he refused to take them any longer(he now prefers only the real thing), but that was mainly to use them up since I had so much pumped from his 10 days of bowel rest due to NEC. I hate to pump there is no way I would pump just to add in fortifier and even when I had a surplus pumped I felt it was not necessary.

I guess I am just a breastmilk fanatic. I really don't believe it can be improved upon and I have always been told that moms with preemies make richer milk anyway so I could not see the need to add to what should be naturally the best product. I was never comfortable seeing the enfamil name on the fortifier package either. Don't get me wrong if your mommy instinct is telling you that is what is best then you should definitly follow through with adding it in. I was just really biased against it since I partially blamed it(maybe unjustly)for the NEC.

Randall has grown just fine on nothing but breastmilk. He was up to 13lbs 12 oz by his 6 month check up and is doing great hitting milestones pretty much on time when you go by his adjusted age.
sofiabugmom's Avatar sofiabugmom 10:21 AM 12-09-2008

We brought our 31-weeker home at exactly four weeks of age, 4.5 pounds. Now that she's six, I can't believe she was ever that small.

One thing that hit DH and me like a brick: don't expect the schedule in the hospital to transfer over to the house. The minute she was home, she decided, "New place? New routine, Ma!" Feeds that had been every three hours went to every 90 minutes or so.

And she REFUSED to sleep in her basinette. I mean Flat. Out. Refused. Four weeks of being on her own was enough, I guess. It was on Mommy or Daddy or no sleep. So while we intended to have her within arms length, she ended up just in arms.

With the reflux, if you do want to co-sleep: maybe if he sleeps with his head on the crook of your arm he'll get enough elevation to help? Not an expert by any means, just trying to think outside the box for you.

Have a wonderful babymoon when DS comes home!
sbrinton's Avatar sbrinton 04:42 PM 12-09-2008
So I think we're going home on Thursday or Friday.

Zephan's got his ng tube out and is eating everything he needs. The biggest issue we're having is that he hates the poly-vi-sol. Did anyone else use that? Or refuse it? Are there alternatives?

To get out of here, we'll breast feed 5-6 times a day and do the fortified bottles 2-3 times a day. Once we're home, I think I'll go towards breastfeeding around the clock except for the middle of the night, when daddy can give Zephan a bottle so I can sleep in one longer stretch.

So ready for that babymoon...
sofiabugmom's Avatar sofiabugmom 05:08 PM 12-09-2008
DD absolutely *hated* the PVS vitamins. It got to the point that for a while she wouldn't even take a bottle because she associated the taste of the vitamins with the bottle itself. We just stopped giving it to her because she wouldn't eat it anyway. We didn't want a battle with her that would use up her calories (she had a temper even at negative four weeks old).

Don't know of any alternatives, though. I'm curious to know myself, just for the heckuvit.
Joyful Mama's Avatar Joyful Mama 09:53 PM 12-09-2008
hooray for thursday or friday! the doc said friday for us today...but i'm thinking it will be after the weekend - he had a dose of caffeine today, and they are supposed to be off of caffeine for a week before coming home. suits me fine, because i was planning on having a birthday party for DS2 on Sunday. it will be a busy weekend, though, since i'm moving in to the hospital now!
sbrinton's Avatar sbrinton 10:21 PM 12-09-2008
Hehe, another thing in common joyful mama. We're having a birthday party for our Asher on Thursday. At this point, it's a toss up whether Zephan will be able to come!

So excited to get these babies home soon.

Today I put Zephan in a moby wrap for an hour to see how he did. He loved it. This is great because he'll probably spend most of the next month in there!
~Destiny&Miracles~'s Avatar ~Destiny&Miracles~ 10:51 PM 12-10-2008
That is wonderful news!!! I have been through the NICU stuff but Ashton was 9.5lbs and 9months old when he came home!!!!