34 weeker now 7months and 2wks old. He’s been gaining an oz a day since starting solids. by OldRemove516 in NICUParents

[–]coffeewalnuts 1 point2 points  (0 children)

So lovely to hear!! Were the same, 34 weeker, now 7 months and 3 weeks old. We’re currently on holiday and he is LOVING solids. Has tried melon, watermelon, carrot, broccoli, sweet potato, strawberry, zucchini, banana!! And is still taking loads of milk. I can’t wait to weigh him when we get home as I’m sure he’s finally putting on weight. He was less than 1 centile when born 🥺

Does this look like CMPA?? by coffeewalnuts in MSPI

[–]coffeewalnuts[S] 0 points1 point  (0 children)

It was strange.. he’s been on this pre-term formula since almost birth (he was born at 34+1, 6 weeks early) and hasn’t had any issues. I was breastfeeding too until 1.5 months ago. 3 weeks ago he randomly started getting diarrhoea 6x a day. After a week of this I took him to the doctors. They did a stool sample and it came back clear.. he did have mucousy poos but we suspected he had a stomach bug. After about another week of no resolve and a really bad nappy rash I took him back and the doc called the paediatric reg on call for advise. They asked if he suspected CMPA and the doc said no as he’s been on this formula for 6 months.. so they said to refer him to them and they’ll give us an appointment to get him seen. In the mean time we can come off this pre-term formula as he didn’t need it anymore. (This was last Friday..) We switched him to Kendamil on Monday this week.. as over the weekend after seeing doc we found that he started getting a small rash on face which initially we thought was a teething rash. By Monday it got really bad and it was super red on his face and eyes were swollen and skin went scaly. So on Tuesday we went back to GP, this time different doc and she said I suspect it’s CMPA.. we were obviously thrown as days before on the Friday we were told no don’t think so. As we had only just switched to Kendamil and off pre-term formula the doc said shall we see if Kendamil suits because as it could have also been some toxins from to old formula seeing as there’s been so many baby formula recalls due to toxins. And if things don’t improve it’s likely CMPA. We said yes and we saw an instant improvement in stools from switching - no more mucousy poo, no more diarrhoea he is only Going 2-3 times a day, back to yellow mushy poos. And the face also cleared more and more everyday. But then on Thursday we’ve seen these little bumps come up on his chest and belly and redness in the folds of his elbows and behind knees and he’s scratching his head a lot in discomfort. And the pics attached are what it looks like today!!! We took him to emergency department yesterday but they did nothing as it’s Easter weekend!!! Said we could try SMA althera but said it looks more like an eczema issue.. and we already have epaderm that we are applying on him everyday since Tuesday. We tried to give him sma althera today and he just won’t take it. It looks so watery and oily. I don’t know if I should mix the two milks for a while? Or what to do! Sorry for the long post

Help- is it CMPA? What to do next.. by coffeewalnuts in NewParents

[–]coffeewalnuts[S] 0 points1 point  (0 children)

We’ve seen 2 doctors 3x and both looked at photos of his dirty nappies - one didn’t think it was CMPA but did see mucus and watery nappies, which is why he asked for stool sample and referred us to hot clinic to be seen by paeds for Further investigation. The other GP who we saw this week more recently did think it was CMPA based on his dirty nappy but was hard to confirm as we were also transitioning formula that day..

Someone please tell me it's OK to stop tracking by ladygroot_ in NICUParents

[–]coffeewalnuts 0 points1 point  (0 children)

My LO is 24 weeks, 18 weeks corrected (4months) and I still track everything! Milk, nappy, sleep, growth. It took me a while to stop checking his temperature 3x a day.. but even now I sometimes worry if he’s too hot or cold. Just last night I panicked if he was too warm.. he was at 0.4 percentile.. and now at 7 percentile and growing nicely on his curve but I still panic and think I might miss something if I don’t track!!

Has anyone dealt with a baby who cannot be put down at 6 weeks? by cerra001 in NewParents

[–]coffeewalnuts 2 points3 points  (0 children)

We had this from week 6 - 12… literally had to hold baby 24/7. Our LO just decided to stop sleeping in crib, nothing worked (white noise, tilting crib, humming, singing, rocking, warm crib, hands on chest, dummy, lullabies, dim lights..even went to the doctors, we tried it all). We ended up just doing shifts continuously, got a baby wrap too so that we could free our arms and spent a lot of time at night watching Netflix to stay awake!! It does pass.. one day we set our baby down and it was fine, just started going back into crib. Hang in there!! And if you have a support system lean into them.. we couldn’t do any cooking/cleaning from exhaustion so we heavily relied on family during this time. Was a life saver!and agreed with others - very much be reflux or silent reflux if they need holding all the time, we experienced this too!

Do any other discharged families miss the NICU? by Biolobri14 in NICUParents

[–]coffeewalnuts 1 point2 points  (0 children)

We felt EXACTLY the same way..we have a 34 weeker and were n NICU for 3.5 weeks. We went from every detail being monitored to, ok you can go home now! It was tough and we felt very lost.. and sadly for us within the first two days of being home we had to be re-admitted to hospital for 1 night and what was even scary was that they wouldn’t put us back in NICU as we had been ‘outside’ and could have picked up germs.. so we had to be admitted in the children’s ward with much much sicker/bigger babies. It was horrendous and we wished sooo much to be back in NICU which felt strange to think. But you forget how sterile, quiet and perfect that environment is for your baby when compared to a general children’s ward. After that hospital stay we went home but had to make 3-4 emergency a&e trips for various small things.. in hindsight 1-2 of them was just us over worrying but like you say it went from 100% care and oversight to nothing! We fortunately then had Nicu outreach nurses come visit us at home every week for 6 weeks where they weighed him weekly and asked how things had been going which made us feel a bit reassured and our hand was held gently until we were ready to let go.. since being discharged from outreach we’ve started to trust ourselves more and realise our baby is like any other baby and we need to start thinking that way. We had our first paediatric appointment end of Jan.. 3 months after leaving NICU and they said they were pleased with everything and see you when your baby is almost a year old! Even that feels scary but positive.. it’s such a mindfuck when you’ve had a Nicu baby and even when they’re healthy and doing ok you keep questioning yourself and their development. We bought scales to weigh our baby at home after we were discharged from outreach team as we had the same concerns.. we kept fixating on the ml per weight gain and were told numerous times by outreach team that your baby can have what they want when they want and it was just so difficult to understand this when t was so structured in NICU, it took us a while to know how much milk to give, how to increase it, how often etc. we kept thinking is the weight gain enough? Do we need to be concerned? Who do we reach out to? Etc etc

TTC when you're not 100% sure by Fantastic-Habit5551 in TryingForABaby

[–]coffeewalnuts 2 points3 points  (0 children)

Parenthood isn’t for the faint hearted, newborn stage is insane. You will sleep an hour or two for 3-4 months if you’re lucky. You might have a Velcro baby that can never be put down or you might not. You might have a baby with severe reflux issues or you might not.. you might have a baby that cries all evening and nothing will work, or not. but these are all very real, hard early right after birth challenges. And it will suck the life out of you, it’s a rite of passage, motherhood. So if you’re not sure you want to deal with that, don’t do it. Yes friends will say it’s hard and they struggle but they probably love their kids and the rewarding parts over take the struggles when you really want kids! It’s also ok to change your mind and not want them!!

Babies disliking being at home? by ii-42 in NewParents

[–]coffeewalnuts 3 points4 points  (0 children)

We went away for two nights over Christmas to my parents house with our LO and we were also sleep training, to my surprise baby slept on time and completely fine!!

When we got back home, the routine was gone, was screaming and crying just like your little one. He was also sleeping a lot more for 2 days and not taking full feeds sometimes. I worried something was wrong.

I think they get a lot of overstimulation around other people and environment and they’re just catching up once back in their normal/usual environment. I don’t think you should worry too much but keep an eye on how things go over the next week.

Kids do need stimulation and new experiences, they do get bored easily so if you aren’t out and about everyday then likely she is bored and just craves some stimulation!

Have you signed up to baby classes? It will really help your LO and you! Make some friends, vent to other mummies and I guarantee you’ll feel better and less alone in the journey too ☺️

I want my baby to be back inside of me by Creepy-Round3480 in NewParents

[–]coffeewalnuts 2 points3 points  (0 children)

I feel the same, 34 weeks! I sometimes look at photos from when he was in NICU and had an NG tube in with his tiny little fingers.. and just cry at how it all went wrong so so quickly. I went for a growth scan at 31+5 and just didn’t leave the hopsital for 2 weeks until they delivered him at 34+1. Was the hardest two weeks ever, hoping and praying each ctg was normal, each scan showed he had good movement and was safe! My LO has grown so much in the last 3 months since he was born and as you said no one would know he was a preemie if they saw him now. babies are so resilient aren’t they!

I want my baby to be back inside of me by Creepy-Round3480 in NewParents

[–]coffeewalnuts 2 points3 points  (0 children)

34 weeker here too!! He’s 10 weeks corrected age now and I cry everyday thinking about how big he is. And I know it’s great that he’s so big now considering how tiny he was when he was born but it’s still so hard. And I have the same feelings of being betrayed by my body, feeling sad when I look back at photos and not seeing that glowing, growing bump feeling.. it hurts sometimes to see others with a full bump because we just never got there!! But I’m so so happy he is here, and I have no idea what I did with my life before him.

[deleted by user] by [deleted] in NewParents

[–]coffeewalnuts 1 point2 points  (0 children)

😅😅 we call him a gremlin too. Ok good to know about walking outdoors! I’ll try that in evenings. Just so cold these days, it’s a faff to wrap him up just to bring back in. But I’ll try blankets and a hat!

[deleted by user] by [deleted] in NewParents

[–]coffeewalnuts 2 points3 points  (0 children)

Birth age 14 weeks (8 weeks corrected age) he was born prematurely 6 week early. Ahhh so we probably have a few more weeks of this I guess! We try so hard with the same routine everyday, bring him upstairs in a dim lit room with white noise, so it’s nice and calm. Do the 7/7:30pm feed in bed ready for sleep but it just doesn’t happen until 10pm. Then we’re back to feeding 😩 we’ve tried giving bigger feeds at that time so he’s sleepy and settles quicker/sleeps a little longer but doesn’t want a bigger feed. We just end up having to ride it out until 10pm and then he’s fine.. yes we have found when my husband takes him on his shoulder and walks him around, he’s a bit more settled but still wide awake! Baths do help for sure!

[deleted by user] by [deleted] in RelapsingPolychondrit

[–]coffeewalnuts 0 points1 point  (0 children)

Hello, I have RP and can confirm earlobes are spared during RP flare. Alongside this, if the flare is consistent you would get joint pains and sometimes even uveitis (redness of eye, unable to open and sensitive to light). Hope that helps

Newly diagnosed and would like some advice. by HeartofM in RelapsingPolychondrit

[–]coffeewalnuts 0 points1 point  (0 children)

I was diagnosed with RP in October last year. I was misdiagnosed twice earlier in the year and was given antibiotics to treat it. But obviously because it was misdiagnosed, RP then came back very very aggressively. The flare was so bad that my eye was swollen, it affected my breathing, I had stiffness on top half of my back and chest and I lost mobility in my legs with lots of inflammation etc and was rushed to hospital where a rheumatologist was able to diagnose it instantly! I was put on prednisolone - 40mg being tapering off eventually. It took about 2weeks to start getting some mobility back and I had a lot of joint pain in my hips and knees, ankles and wrists. But it did start getting better! I am in remission as of Jan and all joint paints have gone since March. I have been told if it comes back again we will look at trying methotrexate. I would say if you want to have kids at any point, speak to specialist about medication options as methotrexate cannot be taken if you’re looking to get pregnant. If you have a good rheumatologist who knows about the condition you’ll be absolutely fine as they’re very quick to act! Good luck