I love that we're getting to the point where there are full-term babies being born who don't need NICU time, though it still makes me a little sad that some of us are still here and may be for a while. Hopefully we don't need this check-in for too much longer, though full-term babies can still sometimes need NICU time.
Grads, feel free to check in and let us know how things are going at home!
***
Current age/adjusted age:
What are your main issues currently?
What are some big milestones you've reached or are coming up?
Questions?
GTKY: What have you found to be the most surprising thing about your NICU experience, either good or bad?
And of course ... show off those babes!
BFP #1 10/6/11 | EDD 6/15/12 | MMC 11/7/11 @ 8w3d | D&C 11/14/11
BFP #2 8/22/12 | EDD 5/5/13 | DS1 born 5/9/13
BFP #3 4/25/15 | EDD 1/7/16 | MMC 7/2/15 @ 13w1d | D&E 7/8/15
BFP #4 12/9/15 | EDD 8/22/16 | DS2 born 5/18/16 at 26w2d
Just keep swimming.
Re: NICU check-in 7/24
current: 9 weeks 4 days
adjusted: 35 weeks 6 days
What are your main issues currently?
Weaning off oxygen support and oral feeds. We're down to 1/34 liter on an oxygen tank, which is practically nothing, but he desats if we take it away. He still isn't quite getting the hang of breastfeeding, so he's still being fed by feeding tube.
What are some big milestones you've reached or are coming up?
Hopefully getting the hang of nursing any day now! He can go home on oxygen if he really needs to (obviously I would prefer he not), but the feeding is something he has to figure out. He had a pretty severe tongue tie, which we had clipped yesterday and I'm hoping that helps.
Questions?
Has anyone used a nipple shield? We just tried that this morning to see if it helps his latch. I think it might have helped some, so we'll see how he does next time.
GTKY: What have you found to be the most surprising thing about your NICU experience, either good or bad?
I was surprised to find our NICU had private rooms. I had always seen open bay NICUs on TV, and while I know a lot of hospitals are still set up that way, I hear a lot of them are trending toward private rooms because it's better for the babies' recovery (less noise).
And of course ... show off those babes!
BFP #2 8/22/12 | EDD 5/5/13 | DS1 born 5/9/13
BFP #3 4/25/15 | EDD 1/7/16 | MMC 7/2/15 @ 13w1d | D&E 7/8/15
BFP #4 12/9/15 | EDD 8/22/16 | DS2 born 5/18/16 at 26w2d
Just keep swimming.
@bananers I used a nipple shield with DS1 and it was a lifesaver. DS had a tough time latching properly, and had such a strong suck that my nipples were torn apart by day 2. We used it for the first 2 months or so, and weaned him off of it over the course of a couple of days. I only breastfed for 6 months, but his latch was perfect after we stopped using it, and, bonus, my nipples healed and stayed healed post-shield. I think I would have given up on breastfeeding had it not been for the shield, so it's definitely worth a try, and in no way means he'll need it forever.
Current age/adjusted age:
2 wks and 4 days/39 wks and 3 days
What are your main issues currently?
Focused on feeding primarily to get weight up! Slightly under 6 lbs - slowly getting bigger & stronger day by day
What are some big milestones you've reached or are coming up?
Hair's coming in - part where baby A lost due to the cpap hat; taking in 90-100 ml both breast milk and formula; making eye contact regularly now
Questions?
Anyone else ever felt their fingers ache/stiff after waking up? If I press firmly on one finger, it feels as though I bruised the bone. It's such an odd feeling and I curl up my fingers to see if they hurt -- and they most certainly ache!! I'm afraid it's arthritis or something. Hope it goes away with time...
GTKY: What have you found to be the most surprising thing about your NICU experience, either good or bad?
Actually to add to @bananers - we were equally surprised too! Our hospital used to have curtains to separate babies as babies used to all be in one space until very recently. They have private rooms for all babies now.
I was overall extremely impressed with the personal touch and care we felt by all the caregivers -- esp. RNs that spent majority of time taking care of Avery. They truly made me feel like I could trust them -- an extension of us parents while we were not with Avery at all times.
And while postpartum emotions are not as talked about, non-clinical folks from the NICU would call once every few days to check on how I am feeling.
Then we'd get calls from MD of the day on Avery's status if we haven't had a chance to see him/her while we were visiting.
We are forever grateful for them; I wonder if we can do thank you cards to the RNs that took care of her and send them a box of chocolates or something!! Being that it's the NICU, I imagine these treats may be hard to give...any suggestions greatly appreciated!
And of course ... show off those babes!
"I like big bows and I cannot lie"
BFP #2 8/22/12 | EDD 5/5/13 | DS1 born 5/9/13
BFP #3 4/25/15 | EDD 1/7/16 | MMC 7/2/15 @ 13w1d | D&E 7/8/15
BFP #4 12/9/15 | EDD 8/22/16 | DS2 born 5/18/16 at 26w2d
Just keep swimming.
Current age/adjusted age: 33 days old/35+4
What are your main issues currently?
What are some big milestones you've reached or are coming up? They went a full 24 hours taking their full feedings and we are most likely heading home this week, but on caffeine and monitors. Will get their thoughts at rounds this morning and do cpr and monitor training today. Yesterday they said we would spend the night tonight and they would go home Tuesday, but that could change. Which meant last night we frantically assembled the pack and play, bouncer, rock n play and installed two car seats!
Questions?
GTKY: What have you found to be the most surprising thing about your NICU experience, either good or bad? How wonderful everyone is. We knew we had private rooms ahead of time so we were very thankful about that and the fact we can stay with them overnight if needed.
BFP #2 8/22/12 | EDD 5/5/13 | DS1 born 5/9/13
BFP #3 4/25/15 | EDD 1/7/16 | MMC 7/2/15 @ 13w1d | D&E 7/8/15
BFP #4 12/9/15 | EDD 8/22/16 | DS2 born 5/18/16 at 26w2d
Just keep swimming.
26 days. 35 +1
What are your main issues currently?
Passing all the upcoming test this week and learning how to give meds.
What are some big milestones you've reached or are coming up?
Biggest milestone we reached 1800 grams out of incubator and drinking 35ml out of bottle.
Off caffeine 2 days so far no problems. They said if she continues home by Sunday/Monday!!!!
Questions?
I also ache/hurt started this week in my legs @AliKay20
Is anyone considering getting the ears pierced.
Went to the her doctor have to be 2 months old or more
GTKY: What have you found to be the most surprising thing about your NICU experience, either good or bad?
The experience I took from it you definitely bond with more nurses then others. Do they get me wrong they all are great for what they do but I'm going miss some of the usual even the doctors.
And it's totally okay if there were some happy tears.
BFP #2 8/22/12 | EDD 5/5/13 | DS1 born 5/9/13
BFP #3 4/25/15 | EDD 1/7/16 | MMC 7/2/15 @ 13w1d | D&E 7/8/15
BFP #4 12/9/15 | EDD 8/22/16 | DS2 born 5/18/16 at 26w2d
Just keep swimming.
What are your main issues currently? Better latch while feeding and gaining weight. Also mama keeping with with his needs for breast milk.
What are some big milestones you've reached or are coming up? We were discharged home after 8 days in the NICU, we are adjusting to life at home with a little one. The other accomplishment is that we have avoided formula for thus far, but have used some donor breast milk to supplement - this part has been stressful to me in terms of trying force milk production and trying to keep up..
Questions? Has anybody used Mother's Milk tea? I used this the other day and it gave me a real boost in production, but I'm not sure if I just got more that pumping and the subsequent few pumps were less than average compared to what I had been producing.
GTKY: What have you found to be the most surprising thing about your NICU experience, either good or bad?
I will wrap up our stay in the NICU in this one post - so it may be long - apologies in advance.
First of our little guy did well with breathing and we got to spend about 45 minutes after a 15 minute assessment by the NICU team in Kangaroo care and trying to nipple. When he got to the NICU for evaluation his blood sugar was only 30 and they started an IV of D10, checked his blood sugar every few hours. He did fine with his airway and maintaining his temperature. We tried to avoid formula at first, and I started pumping like crazy to try and get my milk to come in. We were able to get a few drops of colostrum that I was able to hand express in him using a tiny spoon. After I had a little more volume neonatologist was afraid he would aspirate and recommended a gavage tube to be placed. Our little guy pulled out both his IV and gavage tube twice. Honestly it was a comfort having read @bananers NICU blog, and kept reminding myself of things she had mentioned - especially "two steps forward, and one step back." He then became jaundiced and had to spend 2 days under the bili lights. I was glad that DH had spent most of the prior day holding Baby D since we barely got to hold him for the next 2.5 days. The bili lights also added to his dehydration. This is where we got into a bit of a problem. The NICU team had wanted to supplement with formula from the beginning, but I was producing just the minimum amount to get by, and he was also having high residuals after feeds so there was no point in cramming more food down there just to sit. Finally with the dehydration they reopened the discussion about formula. We had purchased our own organic formula that we wanted to use should we need to supplement.
This is were things got really annoying. The NICU team told us that we had to use the formula company that they contract with and that we have no choice in the matter with regards to what formula is used. We said that we preferred to use organic formula - or at very minimum formula that does not contain genetically modified ingredients. I'm aware that there is no currently literature to support our decision - but both DH and I felt (and still feel very strongly about this) and feel that we do have a choice in what our child is fed. We were told that the hospital did not have organic or non-GMO formula, and that even though we had an entire container of what we wanted to use in our room - that we were not allowed. We continued to asked to discuss this with the rounding neonatologist but his sugars held so they didn't want to bother anybody about it. Of course when everything was going on - the priority remained on breastfeeding which was stressful to me and the baby. Also the NICU team tended to wait until we were trying to nurse to come in and have discussions about stressful things like not being allowed to use our own formula and also about the tests regarding his grade 4 hydronephrosis. At one point the neonatologist nurse practitioner came in to express "their concerns" and said that we needed to supplement with something and again recommended an "approved" formula but again couldn't answer any questions that we had been asking. She again said that our formula was not "approved." I bluntly asked her "approved by whom? because NO brand of infant formula is regulated by the FDA, but that every formula sold in the USA is required to meet the same standards." She became quite agitated by my question and statement and said that if we weren't going to follow their plan of care then we should find another hospital - again this happened while we were just settling in to nurse. I was absolutely livid. We had been asking what our options were - even in that exact conversation - nobody would provide us with answers so that we could make a decision. This is when DH intervened and told her to leave the room and not to come back until we were done feeding. Then magically all of the formula and even donor breast milk appeared in the room. It seems that the formula that the wanted to give him all along was non-GMO, but nobody ever bothered to even check on what we were asking. They then sent in the unit's nutritionist who discussed the formula that we wanted to use and said that it was just fine - there were no issues with it - and because the container was still sealed that the team was also okay with it, but then the neonatologist said that organic formula is expensive and that if you are going to pay that much money you might as well go the donor breast milk route. The details were provided and that is how we decided to go. She asked that for the next 24 hours that he get 30 mls of expressed or donor milk every 3 hours and they would monitor is sugar and urine output and check his labs again in the am. I was SO relieved that we had reached a resolution on the issue that everybody was agreeable to. And finally I said to the nurse - this is what we had been asking for the last 18 hours - nobody would even talk to us about the issue. She some remark about the staff not being available after hours to which I responded "this is an ICU, not a bank," I still feel the were very wrong not to come in and answer our questions within a few hours of them being asked.
Once we started supplimenting this was our turning point and he had is VCUG which didn't show any reflux so the pediatric urologist (who is freaking amazing!) didn't recommend long term antibiotics - which we were very pleased with and then we were home 2 days later and he gained 2 1/4 ounces at his first check-up but is still down 6 ounces from his birth weight, so we will recheck again on Friday to make sure he is progressing the right way.
The only other thing I would add about challenges was the design of the hospital. I was in the postpartum area and had to walk (about 7 - 10 minutes each way - and I'm a fast walker) to get to the NICU which is technically in a different building. So every 3 hours I spent about 30 trying to feed, 45 trying to pump, and 15 to 20 in traveling which left almost no time for sleep and taking care of myself. In the NICU for the first 4 days we were stuck in a tiny corner of a shared room which had a chair and one recliner, and a public bathroom. Trying to stay there all the time (to cut the traveling was not really a viable option either) and it left no time to care for myself. On day 4 after i was discharged they did move us to a private room where DH and I stayed one night (one recliner and one couch that opened into a bed). Then the next night we were able to get a room at the Ronald McDonald house because we live over an hour away from the hospital. BTW, if you are ever looking for a charity to donate to - please consider this one. In the end it all worked out - but it was a bit of a rough and stressful process that I wouldn't wish on my worst enemy. My heart goes out to those who have to deal with this on a more long term basis. In the end the neonatologist apologized to us at discharge because of how everything unfolded and most of our nurses were absolutely AMAZING.
This is obviously a very long and personal post - so I will leave it up for about a week in case any of the regulars want to read about it - again my apologies that it is SO long.
And of course ... show off those babes!
Photos to follow soon!
I agree - Ronald McDonald house and March of Dimes are what I learned more about from Avery's NICU stay and where I'd happily donate towards.
This feels so long ago but I only had a 2-day stay at the hospital. We got a hotel close by (we didn't meet the mileage requirement to stay at RM house); looking back, I was in no condition to be walking around that much right after giving birth (3 different places for stitches so my down there was extremely sore - getting in and out of the car was a b*tch).
While I was wheeled into the NICU during my hospital stay, I definitely did the 20 min routine walk to the NICU and back to the hotel room 3x/day (visited her at 9 AM, 3 PM, and 6 PM). I guess at that time, I didn't even think about taking care of myself as much as I should be. It's now week 3 and I'm feeling much better. Hope you're able to get some rest!
I also did way too much walking postpartum. I'm thankful I didn't tear this time but I remember feeling like my insides were going to fall out from stretched out abdominals.
BFP #2 8/22/12 | EDD 5/5/13 | DS1 born 5/9/13
BFP #3 4/25/15 | EDD 1/7/16 | MMC 7/2/15 @ 13w1d | D&E 7/8/15
BFP #4 12/9/15 | EDD 8/22/16 | DS2 born 5/18/16 at 26w2d
Just keep swimming.
BFP #2 8/22/12 | EDD 5/5/13 | DS1 born 5/9/13
BFP #3 4/25/15 | EDD 1/7/16 | MMC 7/2/15 @ 13w1d | D&E 7/8/15
BFP #4 12/9/15 | EDD 8/22/16 | DS2 born 5/18/16 at 26w2d
Just keep swimming.
I did get some skin to skin time right at birth. They gave him some formula and took him to the NICU for assessment while I went to recovery. My husband stayed with him. His glucose had gone up so they initially let him room in with us, and I could breast feed but needed to add 20mL of formula. The next morning his glucose had dropped to 37 so they took him to the NICU for IV glucose. They also had concerns about his bilirubin levels.
My husband was able to go to the NICU with him but I was not because of my recovery. Both my husband and I had barely slept in 3 days at that point. The NICU staff sent him to get some food at the cafeteria. He actually fell asleep on his waffle and got woken up by hospital security.
I was able to visit eventally and breastfeed. We had some trouble with communication with the staff about my desire to breastfeed. I would go down every three hours to feed but they sometws had already fed him and kept giving him a pacifier against our request. We eventually worked it out with the staff, the area of the NICU we were in was not set up for breastfeeding, so they moved us to a pod. We also cleared up his care plan, which really helped.
He responded well to the glucose treatment and we were able to taper off, bUT then he got some O2 level drops. They did all kinds of tests and kept him for observation. The tests all came back ok. After 4 days he was released back to room in with us, and we were discharged the next day.
I am grateful for the care he received but the experience has left me very shaken. It was awful having to leave him in the NICU, and having him taken off to the NICU. The constant list of potential problems related to his size makes me feel awful, my GD was well controlled in pregnancy and his size is likely genetuc, but I just kept feeling like my body failed him. That combined with the sense that mt breast milk was not enough really shook me. I am hypervigilent about his breathing, but I am trying to relax more.
He is gaining weight and our breastfeeding relationship is getting better.