NICU check in 7/10

bananers · July 2016

Since there are a few of us with NICU babies (@tmk0325 @lilpinky7878 @AliKay20), I thought a weekly check-in might be helpful so we can support each other through this often confusing and emotional time. As some of us start to graduate from the NICU, we can still lend support to those going through it (and moms of previous NICU babies, feel free to chime in with support, advice or encouragement!)

* * *

Current age/adjusted age:

What are your main issues currently?

What are some big milestones you've reached or are coming up?

Questions?

GTKY: Who do you think your baby(ies) look(s) like?

ETA: pictures are a requirement to participate.

bananers · July 2016

Current age/adjusted age:
current: 7w4d
adjusted: 33w6d gestational

What are your main issues currently?
Right now we are dealing with really bad reflux, and trying to wean him from oxygen. He is on 1 liter of low-flow through a nasal cannula. They tried removing his oxygen altogether two days ago and he tolerated it for about a half day and then needed support again. They are hoping to try again in a few days.

What are some big milestones you've reached or are coming up?
Biggest recent milestone is that he is out of the incubator and in an open crib now! We are hoping to try breastfeeding in about another week (still being fed pumped milk through an NG tube)

Questions?
Anyone dealing with reflux or dealt with it in previous babies and have any tips? It's so hard listening to him grunt and cry out in pain!

GTKY: Who do you think your baby(ies) look(s) like?
He looks just like DS1 when he was a baby, who is DH's mini-me now. But I think I see a little bit of me in there too.

ETA: pictures are a requirement to participate.

Stephanie7693 · July 2016

So sweet! Do they keep his crib elevated? My oldest had reflux issues, and she had to be at a 45 degree angle all the time. But I don't know what it's like with a feeding tube. She also was most comfortable on her tummy, so she was spoiled with being held like that as often as possible, and in the hospital they would let her sleep on her tummy since she was hooked up to oxygen monitors. Rubbing circles on her back sometimes helped too. But I found often times I was helpless to make her feel better. Is Emmet on zantac for it?

bananers · July 2016

Stephanie7693 said:

So sweet! Do they keep his crib elevated? My oldest had reflux issues, and she had to be at a 45 degree angle all the time. But I don't know what it's like with a feeding tube. She also was most comfortable on her tummy, so she was spoiled with being held like that as often as possible, and in the hospital they would let her sleep on her tummy since she was hooked up to oxygen monitors. Rubbing circles on her back sometimes helped too. But I found often times I was helpless to make her feel better. Is Emmet on zantac for it?

Yeah, they have the head of his crib propped up and they let him sleep on his belly since he's on oxygen and being monitored. I also try to hold him during and after feeds as much as possible. He isn't on any medications yet - I think they are taking a more conservative approach and trying not to over-medicate where possible. But they have talked about medicating in the future if it doesn't get any better.

Stephanie7693 · July 2016

My daughter was put on zantac and it helped tremendously. She was not keeping enough down to gain weight though, and she was still having Brady episodes. She was discharged about 10 days after starting her meds. We were able to wean her off of them around 12 months. But I can totally see why they are waiting with your little man. Being so early he will hopefully just grow out of it on his own.

AliKay20 · July 2016

Current age/adjusted age:
Current: 3 days old (as of 7/10)
Adjusted: 37 wks & 2 days

What are your main issues currently?
Baby's breathing fast due to lungs not fully maturing (on cpap). Bilirubin level still somewhat high, causing jaundice (on phototherapy).

What are some big milestones you've reached or are coming up?
Started tube feeding (7/9) with formula (I don't produce enough quite yet); started at 4 ml and she hasn't thrown up so they increased it on 7/10 to 8 ml! Got a few poopy diapers indicating her system is working. Hope this also improves her jaundice per RN (fingers crossed).

Questions?
What is your pumping schedule like? With Avery in the NICU, I try to pump every 3 hrs hoping I can get some in a syringe to bring over when I visit. My supply has increased compared to when she was born but not enough to surpass the amt allowed in the syringes. Do I still pump every 3 hrs at night? Right now, my boobs are quickly filling up and they are starting to hurt! I put warm towels on before I pump and right after. Hope I'm doing this right!

GTKY: Who do you think your baby(ies) look(s) like?
She's got DH's long fingers and toes. Face? I also see a bit more of him than me but at certain angles, I'm not so sure.

*edited bc duh, pics...*

Little Miss Avery sleeping like a boss.

bananers · July 2016

@AliKay20 I had a hard time bringing my milk in via pump. I pumped every 2 hours during the day and every 3 at night. For the first two days I got absolutely nothing. Bone dry. By day 3 I finally got just enough to get in a syringe. But E started off at 1 ml feeds since he was so tiny, so I was able to keep up as he grew. He's now on 36ml feeds and I'm pumping about 35 oz a day. I now do every 3 hours during the day and every 4 at night. Keep at it! It sucks to pump so much and it's so depressing when you aren't getting anything, but putting in the hard work now will pay off later!

AliKay20 · July 2016

Thanks @bananers !! My boobs hurt like hell! They're engorged but I'm still producing very little. Apparently eating oatmeal can help with this?!? As much as I would love a good straight 6 hrs of sleep, I need to get up every 3 to 4 hrs at night to get my milk going!

Omg, good straight 6 hrs of sleep was just before Avery was born but now it feels forever ago when it hasn't even been a week yet!!

tmk0325 · July 2016

Current age/adjusted age: Current age is 19 days old. Adjusted age is 33w5d.

What are your main issues currently? We are having some pretty major Brady/Desat issues with both boys. Cohen is more so than Clay and we had to go back and put about 25% oxygen in his isolate. I think 20% is what it is normally at. Our other issue is learning how to eat. Right now they are still on the nose feeding tube, but they are showing amazing cues. We've been practicing with dry breasts and I think probably by Thursday I will try breastfeeding. Clay is a total boob man, Cohen is still figuring it out.

What are some big milestones you've reached or are coming up? I haven't talked to much about what the boys went through, but they are doing pretty good. I was able to sneak in two steroid shots the day I went into labor and they think that helped immensely, along with them actually being pretty big for 31 weeks (3.11/17 inches and 3.10/16inches) The first day they had a ventilator and by day 2, they both got to come off that and were on just the nose cannula. Those actually came out a few days later, as they were both breathing very well on their own and still are. They were on the big billy lights (complete with the little sunglasses) for a full day and had the little blue billy pad for I'd say a week and a half and then they got to come off those. Our biggest achievement for me was them both getting their IV's out last week. They hated those and they were constantly being moved and blowing veins trying to get them in. Clay also got moved to a crib yesterday! Cohen will be a bit farther behind because of the added oxygen in his isolate.

Both boys are taking fortified breast milk from me and as of yesterday were at 40 ML each. For those of you trying to make milk and pump, keep trying it will eventually happen. I feel kind of bad saying it since you ladies are having some issues, but I've been very lucky in the pumping department. I've made enough to feed both boys the whole time and am starting to freeze some at home. Im pumping every 3 hours during the day and 4 hours at night (I need sleep). The biggest advice I can say is drink half your body weight in ounces of water and then some (for everything that comes out the additional amount should go in) and also if you like oatmeal give it a try. Once I started doing both these things I got a lot more out! Oh and pretty sure my nipples are going to fall off...

Questions? Is anyone else dealing with going back to work while your baby is in the NICU? I think @bananers I read you were? I started back this week and that was hard yesterday. It's a 113 mile roundtrip drive from our house to work to the hospital and home again (the hospital is an hour away). So it's been interesting, I'd love any tips for those of you that are working. I'm only working 20 hours thankfully, so I go to work from 7:30-12:30 and then head to the hospital from about 2-7. At least the weeks have been flying by...

GTKY: Who do you think your baby(ies) look(s) like? They are identical and I think they look a little bit more like their dad.

I'll come back and post a picture from my phone, since I'm on my work computer now.

lilpinky7878 · July 2016

Current age/adjusted age:
current: 12 days
adjusted: 33w2d gestational

What are your main issues currently?
Right now it's just gaining weight. Since all babies loose the first week she was like down to 2 pounds...

What are some big milestones you've reached or are coming up?
Biggest recent milestone is no more picc line and at our max feedings also by tube. On a nasal can. If she does good the 48 hours we will be moving out of the box to a open crib. Also bottle feeds!!!

Questions?
Lost for questions now....

GTKY: Who do you think your baby(ies) look(s) like?
Ms Alina so far has my nose daddy widowed peek but my personally lol....time will tell

bananers · July 2016

OMG, @tmk0325 I can't handle the twin snuggling cuteness! ::dies::

I went back to work two weeks ago. I'm in the office two days a week and working remotely from the hospital three days per week. I will admit it's hard to concentrate on work while I'm in the hospital and I'm much more productive while in the office. Either way it makes the days go by faster and this way I can save the rest of my leave for when E comes home.

tmk0325 · July 2016

@bananers yeah I thought about asking if I could do a half day from the hospital but I honestly don't think i would get anything done and want to nap if I wasn't doing their cares, pumping, and everything else. So I've been sneaking peeks at them on the online viewing camera. Day two was much better than day 1. Im hoping it'll only be a few weeks I'll be working and it'll be just enough time to finish a few things and make a list of things to be done for my coworker. She thanked me for coming back even if it was just briefly.

I cant handle their cuteness either! I know they are my babies, but they are just so adorable especially when we get to put them next to each other.

bananers · July 2016

Ooh, I'm jealous of your online viewing camera, @tmk0325!

tmk0325 · July 2016

@bananers The days when they have it on it is nice to check it periodically!

Also, I just caught up on your blog and Clay and Cohen are almost at the same mark as E. Pretty much everything you are going through (minus the nose cannula) we are dealing with. We are exactly 34 weeks today and I think you are a few days a head of me. The boys yesterday were 4lb12oz and 4lb9oz and we get to try bottle feeding them today for the first time. They have been showing really good cues for about a week (hands to face, sucking on pacifier/found thumb, opening their mouths, etc) and have been practicing with a dry breast for about a week also. Are you doing the dry breast too? I thought we were going to start trying to breast feed today too, but it sounds like just a bottle. Our speech therapist is recommending that to start I guess. I'll only be breast feeding them for 2 feedings while I'm there, so they want to try to get them used to the bottle. I'm ok with this, but eventually I'd like to try breastfeeding. With twins though it will be much easier if they get used to the bottle now though so my SO can feed them too when we are home.

We are also having some pretty good brady/desat issues like I mentioned before and in the last few days I have mentioned to the doctors I thought it was reflux related. They both are in cribs now (yay, Cohen's happened yesterday) and at an incline, but they are very snotty/phlemy sounding when they are laying there. If they are laying on me during kangaroo time and I'm sitting up, I don't notice it at all. They suction the snot out after every care, but I really think its reflux related. It sounds like they are gagging sometimes which freaks me out. I also have dealt with reflux my whole life so it really wouldn't surprise me. I have stocked up on doctor browns bottles and am planning on letting them sleep in rock in plays when they get home! I do agree not swaddling their arms also helps with the brady's and desats too.

We are also on caffeine and our doctor doesn't want to increase it (they are on the low end of it), because of the risks to their heart, etc. They did mention that they need to be off of it for 5 days before we can go home, so anticipate with that and the feedings it will be a while yet.

Bunnie3615 · July 2016

Hello my first son was born at 33+6 and we spent 8 days in the NICU I just wanted to say that the midwife I had with my first son suggested a tea called mother's milk when I wasn't able to keep up my milk suplie it worked great for me and didn't taste to bad either. Good luck too all u lady's! And just remember to keep ur heads up!

jamiesc58 · July 2016

@bananers your little man has grown so much! It is amazing to watch his progress. Our last dd had reflux issues to the point where they put her on baby zantac. She took that for a couple of months and then they had us wean her off it. She has not had an issue since.

AliKay20 · July 2016

Some days are better than others. Even when baby is making progress (slowly but surely), I find myself randomly crying my eyes out. Maybe because it's already been a week since we had A but man, today was rough despite her progress report.

bananers · July 2016

Hugs, @AliKay20. I find myself randomly crying too. It's hard.

@tmk0325 it's interesting how different doctors/nurses have different opinions/philosophies. We are doing a dry breast (though I can almost always squirt milk, even after pumping) so we don't overwhelm E with my letdown. But they don't want to introduce a bottle until we figure out breastfeeding and he's still not quite getting the hang of it. He also isn't doing a ton of cueing so that's great your boys are! We are hoping to get there soon. I'm really scared of BFing not working out.

tmk0325 · July 2016

@bananers after I got to the hospital yesterday they changed their mind and decided to let me try a wet breast and they would do a bottle in a day or two. They discussed it in rounds that morning and figured since I wanted to try and they were showing such great cues to let me. The boys did amazing, both latched and hung out an sucked for 25 min. We didn't weigh them before and after because they didn't expect them to do so well, but when they checked their residual the next care they each had a ton! They also got a full feed on top of the breast feed so they were shocked that they got as much as they did. They impressed everyone. I was pretty pumped too since I had no idea what to expect. This morning on the other hand, my last two pumps my right boob was like a quarter of what it normally would be so I'm freaking out a bit thinking something is clogged up! I'm waiting for the lactation lady to come up and check the girls out. We are doing another try at breastfeeding again at noon so we will see what happens then. I'm sure little E will get the hang of it pretty soon, I really felt the dry breast was a bit part of Clay and Cohen getting the hang of it. Just keep at it, you are doing great!

@AliKay20 oh yes the random crying is all to real and happens a lot! Doesn't have to be anything bad or sad but over good things too. Damn hormones! And just take it one day at a time. Try to find something positive to focus on every day, even if it is just something little. It gets easier and sooner than later all our babies will be home. Don't forget to take time for your to sleep and shower, etc!

tmk0325 · July 2016

Also, not sure if you guys are familiar with The Tiny Footprints Project, I just learned about it. It is a non profit that offers a free newborn photo session to those in the nicu you. I'm going to try to request one and see if they have a photographer in our area. I just wanted to share!

lilpinky7878 · July 2016

Idk about other states requirements ur baby is born b4 35 weeks you might be eligible for ssi.

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