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My bub was born 38+5, is 15 days old and have been in the NICU for 11 days. With school holidays over and DP back at work, I'm feeling like I need people to talk to as this means no more visits from my boys for a while. Haven't joined the premmie group as bub isn't prem so it just doesn't feel right.
It's hardly the same, but I've just had my full termer in SCN for two days due to ABO incompatibility jaundice. Having been in there with a premmie in the past and knowing the differences in that journey, and when, this time, all others there were prem, it was odd being in there with my apparently giant baby. I felt like the other parents did not identify with me so it was harder to chat.
I can't imagine what being in NICU for that long must have been like for you. And being away from your other kids. Sounds really, really tough. :hug:
Have you been given a sense for how long you might be in and what the process will be?
It's so rough being in NICU. My boy was in PICU for six weeks from when he was 15 days old. It's such a foreign environment and I found it terribly hard to be away from my dd (17 months) for so long.
Make sure you are giving yourself lots of breaks. Leave the hospital for walks or coffee breaks when you can. It's so easy to get completely taken over by hospital life.
Was hoping to be out tomorrow or Wednesday but looks like another 2ish weeks. Bub started off under the lights in the incubator in my room at 3 days, SCN the day after with a rising temp and started IV abx. That night she was transferred to the NICU at a different hospital to have her eyes checked by the ophthalmologist as one was really swollen and weepy (bottom of her eyelid was out the front). We were expecting to stay the night and be transferred back but by next feed, she had been moved to an isolette with an even higher temp. We weren't going back from that time on. She had HPV that started in her eyes and has progressed to meningitis and she also has MRSA that entered via a cut on her head by the OB "breaking my waters" after complete SROM. I previously decided that if she were to stay in longer yhan this week, I'd go home to my boys but now it looks like the time has come, I cannot bare to leave her. She is on Vancomicin and Ensiclovier (?sp on both) as well as heprin, nilstat and an eye cream. Previously had been on 6 abx. She has improved lots after declining until she was placed on the right meds. She was covered in pustules, both her eyes swelled and she has a rash on her face. Eyes have gone down heaps, pustules are dying out andvthe rash is being a bit stubborn. She stayed under the phototherapy lights for 5 days as her levels weren't dropping enough and then when they did drop and they stopped it temporarily, her levels sky rocketed again. She has had two LPs, the second one came back a lot better than the first. Have escaped bottles and NG tube after fighting to keep her soley on the breast. She dropped weight last night but has been gaining the few nights before :) And that's where we are currently at lol
Hugs Dampyre sounds like you need them, all of my babies were in nicu/scn the girls were premmies and ds was full term. He was the hardest to leave behind as we didn't know why he was sick. He had jaundice and was under the lights for two days but he also had a low grade fever of 37.2. He had daily tests and antibiotics I wasn't able to stay with him as the hospital was full it was so hard to leave him there, even though I got to be with the girls. We still don't know what was the cause but they think he had an infection somewhere. Hope your bub picks up soon.
:hug:
Vic was 10 days late and 5 days in SCN, a day on peads (diff. hopsital) two days in ICU and 5 on peads. he was in SCN due to temp and low BSL, but after a lumbar puncure they think he had meningitus so had two weeks of AB's and due to his poor vein access ended up with a hickmens (which moved) and then a right femrel CVS. thats why we where in ICU for two days to make sure he didnt move it. i had DH & Dj in every second day but was alone most of the time slightly differant but if you need to talk im happy to listen xx
Hugs damprye, thank you for updating us, I often think of you & wonder if you're home yet with your little girl. My DD was in scn 8 days & she was 41+1 days born. She was the biggest bub in there but hooked up to the most equipment. It is a real no mans land isn't it? You've waited all this time for the birth of your baby & yet you still are waiting.
She sounds like she's had such a rough time, I hope she gets better soon xxx
Damprye - I have been following your story, especially as I'm in WA too and due in Jan (can't help but selfishly hope theres no MRSA where I'm birthing). I have no personal experience, but wanted you to know that there are plenty of ladies here who will support/chat to you or help you in whatever way you need. I can only imagine how hard it would be to not be with your DP and boys, and not to have your little girl at home. Are you going home at night or do you stay in/near hospital? My only advice would be to make sure you're looking after yourself x
Thanks :) So far I have been lucky and been able to be in one of the parents rooms and I'm hoping that if I have to leave it, that we can get transferred upstairs to the PICU. I can't wait to take her home already. DS1 is struggling atm at that is the hardest part. I'm used to the daily life in here but the life out there I miss. I'll be seeing if DP can take me home for an hour tomorrow between feeds (will have to time it very well) and hope my room doesn't disappear in the meantime...or maybe even sre if DP will stay here and let me borrow his shiny new work car lol. I expected to be home well before DS1 was to start back at school so I really need to find his bag and dig out his school clothes (he hides them) and organise some baby stuff, grab my razor, etc. I feel like a monkey atm cos I haven't shaved since about 2 days before bub was born lol. There is somewhere here to go to sit and chat with someone out of a hospital setting so much.
I know in the scheme of things, we are still short termers, there's a 3mo that isn't going home any time soon and a lil tiny one that will be in for quite some time. It's frustrating though when there are others coming and going with 1-3 days, very happy for them, especially as I am a chatter box and like to get to know them a bit and they feel good having someone to chat to, one of them called me a life saver :) Plus I'm about the only smiling one in here, more of because that's how I cope but it helps them and me :)
How was everyone else's journeys? Obviously not great but how did you get through it?
One foot in front of the other. When we went to a differant hospital, i found counting down the days (and hours at one point) kept me sain. Hideing in the cafe and people watching or buying those nasty gossip mags to avoid reality. (i had an 'end date' due to the corse of ab's) i also got chatting to nurses too, any one i found scn.was easier to do that then peads/icu. But i also chatted a little on FB to ease the lonelyness.
Damprye, firstly I want to send you BIG hugs! I can only imagine what you are feeling with being in NICU and being told your baby has meningitis.
I do have my own story to give you to try and help with hope.
I myself as a newborn baby had meningitis twice, first time I was 8 days old, back then they kept mum and bubs in for 7 days, they took me home and I turned that night. I was kept in for 8 weeks (remember this is 26 yrs ago, less technology back then). Mum finally got me home, was packing up the house to move to Sydney (dad in the navy and they were in Canberra at the time). Home again for 1 night and I took a turn again. First time was bacterial, second time viral. I was kept in again for another 5 weeks. My parents were told I would have lots of issues (including brain damage) because of having it, let alone twice. I am now 26, top of all my classes throughout school, a beautiful son of my own and no effects from the meningitis whatsoever (other than not being allowed to have the whooping cough vax). There is hope!
I will also inbox you some other info
Hope you are holding up ok, I do know what it is like having a sick little one xx
How are you and your family? x
Was headed to bed and then got the call to go back in after she already fed as she became unsettled agaim. Turns out she just needed a big poo lol! Loved having most of today as just her and I. Lots of cuddles :D I just wish I could spend some quality time with my boys as well...without losing my room :'( I feel torn in 5 different directions. Each of the 3 males in my life need some decent time with me, I need to clean my house back up and I need (most importantly) to be here with Lil Miss.
I found out as well today that we have been approved for our new house but money is already an added stressor cos now I need to pay to move, for my transfer fees and for the car rego for thay car...as well b as all the normal stuff and to feed the family looking after my eldest (so 6 people, plus me). I hate financial stress.
Missy Moo looked to be going a bit backwards today. Feeding issues, desatting for the first time in days, rash more pronounced and swelling looking a bit worse also. Will speak to the OB tomorrow. She also had a few coughs and sneezes so I really hope I haven't been too close to someone with a cold cos that's the last thing she needs right now.
So it has been an ok day, just a bit of a down one. Maybe I need to up my placenta back to 2 twice daily lol
Sorry to hear your little girl has gone a bit backwards...hopefully today brings better news.
Are you seeing your boys every day? It must be so hard, I can only imagine. Can you share photos and video messages so when you feel lonely you can look back on them? And having to guard your room would be a bummer too!
Have you had anyone come to keep you company? A friend or a relative, just to share a cuppa with and have some time out? If it was me, I'd be craving that company.
Sorry to hear your little girl has gone a bit backwards...hopefully today brings better news.
Are you seeing your boys every day? It must be so hard, I can only imagine. Can you share photos and video messages so when you feel lonely you can look back on them? And having to guard your room would be a bummer too!
Have you had anyone come to keep you company? A friend or a relative, just to share a cuppa with and have some time out? If it was me, I'd be craving that company.
Today is better. Bub is down the Vanc and her eye cream :D Just on the Enciclovier, herperain and nilstat now.
Can't see my boys each day any more as school, work and daycare are all back this week. I do have a friend in the hospital with her lil girl so we go for hot chocolate and get fresh air while she has a smoke lol. So that's good, we message each other and then visit each other
It is rough when you have a full term bub in scn. My ds2 was 37 weeks and spent 16 days in special care. It was a distressing time and I felt like I was neglecting my eldest son
I personally would join the preemie group. They know the ups and downs you are feeling. Hugs. I hope your little man is home soon
3weeks tomorrow and we have been transferred up to the SCN :D
Dampyre that is precious news. :hugs: I'm from WA too and have been thinking of you and missy moo a lot. The girls responding in here have been wonderfully supportive. Hang in there, this too shall pass.
Woohoo damprye! Another step closer to your little girl going home :)!
Just 9 sleeps to go hopefully :)
And yes you all have, thank you :)
No longer on the monitor for o2 sats as it was being too annoying coming off all yhe time so I asked why she was still on it and her chances of coming off it and they turned it off :D
Opthromologist is no longer daily and says her eyes look good and taught me how to help open up her tear duct as her left eye will no longer drain. May have to see them once more before leaving but that's it for now :)
Long line may need replacing as it keeps occluding. They already had to have the pressure set right up, stop the heparin/saline mix whilst her abx go through and now having to manually push through the flush quite harshly now. Not what we wanted but as it has been getting progressively worse, this may be our only option to finish the IV meds as she can't have normal sites anymore.
On the discharge side, IV abx stop on the 26th and then we havr 48hrs observation and I get taught how to mix her oral abx. She will be on oral Encylovier for at least 6 months. So home on the 28th, DS1's birthday on the 2nd, house inspection on the 4th and moving on the 6th so it's going to be very full on when we get home with all 3 children lol. Taking this as my last opportunity to rest for a few years ;)
Me, I'm not doing so bad. Recovering for my latest bout of food poisoning from here so a lil miserable and the night before lil Miss decided that breasts were dummies again and refused to stop suckling for 5hrs straight! My poor nipples bug they are feeling better today. Enjoying my cuddles with her as I type this and trying to ignore my rumbling tummy lol. Still haven't managed to eat yet today but that's not necessarily a bad thing. I have had some water though :)
I love reading your updates :) Glad little miss is improving & you're enjoying your alone time before heading home. Make sure you eat though! Grrr, your body needs energy :)
All good news regarding your DD :)
EAT! As Tic Toc said, you need the energy, and DD needs your very best breast milk.
she must know that your breastmilk is helping her :D
I am sorry to have only come across this...wow, what a big massive start for her! how scary that she got meningitis :(
On down days i would go back to 2 pills. remember to take them only in the morning though...they do tend to 'perk' you up so much that sleep can be tricky. i changed up how many pills according to how i felt.
busy busy times ahead. that is awesome news that you got the place - but yeah money stress is no fun, but i guess that is also pretty normal for any relocation...you'll get there!
much love, have been thinking of you heaps :hug:
I think my body was telling me that it wasn't ready for food yet. Now feeling heaps better and had avery yummy and filling dinner or lamb shank, mash and veg that a very lovely lady donated!
Lol Cassius, I think that may be why I sometimes have trouble sleeping at a decent hour but sleeping fine once I get to sleep (minus waking to bub ;) ). I will make sure to have them with breakfast from now on!
Normal newborn issue is I think her days and nights are upside down lol. She sleeps and feeds so well during thd day and more wakeful and feeding more frequently during the night. Holding her and being louder during the day to try and fix that.
There has been a back step after seeing the Opthromologist and that is being back on eye cream but I am so glad about that as I had been telling them her left eye was getting worse again. I love it when they finally realize I'm right, annoying it takes so long. Shouldn't impact on EDD though as caught in time unlike last time :)
Sorry I've neglected here.
Well 3 days before expected date of discarge, the long line became blocked and they tried a normal IV again but that stopped working after just a single dose of abx (as I told them it would) so instead of going through another long line or a new IV each set of meds, WE GOT TO GO HOME EARLY!!! :-D She has been on oral abx since and she will stay on them for 6-12 months.
We have settled at home quite well and 2months on she is a very healthy, happy baby and is thriving. She fits in perfectly. Already growing out of her 000 clothes and fitting better in 00. She turned 3mo yesterday and we had a wonderful Xmas all together :-)
Sorry I've neglected here.
Well 3 days before expected date of discarge, the long line became blocked and they tried a normal IV again but that stopped working after just a single dose of abx (as I told them it would) so instead of going through another long line or a new IV each set of meds, WE GOT TO GO HOME EARLY!!! :-D She has been on oral abx since and she will stay on them for 6-12 months.
We have settled at home quite well and 2months on she is a very healthy, happy baby and is thriving. She fits in perfectly. Already growing out of her 000 clothes and fitting better in 00. She turned 3mo yesterday and we had a wonderful Xmas all together :-)
Thank you for the update, I've been wondering how everything was going :) Glad you had a lovely Christmas together :)
That is so wonderful.
Brilliant news x
Lil Miss has mild brain damage (mostly affecting muscle control and processing) and GDD due to the infection reaching her brain. She sometimes has outbreaks and we need to keep an eye on any personality changes (as it could mean an outbreak in her brain) but she is mostly otherwise healthy and a happy lil girl :)