New preemie mom...its scary

[paulasdaisy]

Hi all Little Charlie was born 3 wks ago weighing 2lb 6oz. Only breathing help he needed was CPAP for a few days. Since then he has gradually gained weight (2lb 13oz) and has generally done everything expected of him. We have just been informed that he may have developed a lactose intolerance so the EBM has now been replaced. He is also having an increase in Bradycardia's Apneas and de-sats... the de-sats have become that frequent he is needing an oxygen face mask. Obviously all this on top of the frighting expereince of SC is taking its toll emotionally...monitors seem to dictate my moods and feelings and I just keep being told its 'par for the course' or 'expected with pre-terms' or even 'its normal' But its not normal for me its horrifying, does any one have any tips on how to cope emotionally with all this? Thanks Paula

 

[Mumof42009]

First of all congrats

Most prem babies have de-sats it's cause there lungs are under developed, they do get better as the lungs start to mature.
It's hard having a baby in nicu and you go through so many emotions, up's and down's so just take one day at a time. Make sure you ask questions when you are on the unit as well so you know what's going on.
Lastly give yourself time to heal even if you go to have lunch or a drink just have that little break whilst your on the unit with your baby.
Have they started your lo on special formula? My ds has dairy allergy he had it from birth xx

 

[AP]

hi Paula and welcome!
My LO was 2lb 14oz and we had our ups and downs. Its funny, right now you will say its not normal to you but when your journey in there is over one day you will see it as normal! I felt very familiar with what you wrote there!

One thing i was told from one of the girls here when i was worrying - that nearer to 'term' everything 'clicks' into place. Funnily enough it really did. I felt like we were never gonna get out of there, but now shes hanging over my shoulder wondering what im doing

Xxx

 

[PrincessPea]

Hi Paulasdaisy

Congratulations on your gorgeous little one and welcome to the club.

I dont think there are any tips on how to cope emotionally other than look after yourself and accept help and support when it is offered. All you can do is keep digging deep and facing each day as it comes but you WILL get through this and you WILL get out the other end - and when you do it is fantastic and worth every second, just keep remembering that. It is a horrendous experience but we are all here to help if you need us.

Sb22 is right, one day you will look back and it will seem 'normal' to you. And also we were told from early on that one day everything would just 'click' and the longer we were in there the less likely that seemed to be but lo and behold one day everything did just click and here we are 21 weeks down the line. It seems like a lifetime I know but stay strong. xx

 

[katy1310]

Hi Paula and congratulations on the birth of your LO.

It is a rollercoaster journey, and looking back, I don't quite know how we did it, but we somehow found the strength and we did manage to cope. I keep thinking there's no way I could do that again but I reckon if it came to that we would cope the same way we did before. It's not easy though, and the monitors etc are really scary. You do after a while get used to knowing what they mean, when to worry and when not to.

I was told exactly the same thing as SB22 - quite possibly by the same person when I was on the phone to her in tears one night after Sophie was still desatting loads around 36-37 weeks. We had been told that she might come home on oxygen but Dona told us to give it to 38 weeks and things would just click, and she was right. She told me 38 was the magic number...

Don't be afraid to ask questions, and if you don't understand something that they tell you, keep asking until you do understand. It's always worth hanging around for the ward rounds if you can, and speaking to the consultants.

Make sure you take time out for yourself too.

 

[PrincessPea]

Come to think of it, I think 38 was the 'magic number' for us as well! My LO came off oxygen and sent home 5 days later all around the 38 week mark!!

 

[AP]

(*whispers* yes it was Dona....)

Paula I meant to add, anything you want, whether it be a rant, answers or whatever, just ask away, we're a small(but 'unfortunately' growing) lil group and someones always around , even if its just for a virtual hug

 

[paulasdaisy]

Thank you all SO much, its really easy to feel isolated when faced with something like this. After one particularly nasty de-sat episode the registrar ordered blood tests to screen for an infection as Charlie has been pretty lethargic today too, he has gone on antibiotics IV to get that round his system before the results come back, so fingers crossed....how common is infection with preemies? It also seems that Charlie may be lactose intolerant too, he has put weight on lovely with EBM, however his nappies have been pretty bad of late, so a sample has been sent off for testing. If he is lactose intolerant then obviously my EBM will be no good (something else I cannot do for him), I am sorry to seem deflated its just that his first two weeks were progressing so well (too well maybe), its just knocked me for six I think.......but your replies have been very uplifting, so once again, thank you xxxxx

 

[AP]

Infections are reeeeeally common Hun, I'm betting its more uncommon not to have em. Xx

 

[25weeker]

Congratulations on the birth of your little boy.

Agree with the other posts and my lo was another one who came off oxygen and stopped desats at 38 week gestation.

Infections are extremely common in prem babies and it hits them harder as they have less reserves to fight it. The good thing is most babies recover very quickly from them.

We all understand how you feel so come on here and vent or ask questions.

Take care xx

 

[PrincessPea]

My LO has what they think is lactose intolerance, I had already stopped expressing for other reasons when we found this out, we were still in the NICU and all that happened was that we were put onto Neocate. The nappies are pretty bad to start with but after 6-8 weeks that all stopped. We came home on Neocate and are still on Neocate which we get on prescription. Took Jessica a few days to get used to the new taste (it stinks!) and now she guzzles it like any other milk. The main difference is it has less calories than some of the other formulas preemies can be put on (Nutriprem etc), it has the same calories as normal formula but Jessica is still putting on 5-6oz most weeks.

Hope this helps on the intolerance front. xx

Edited to add - we also had antibiotics for 1 infection and numerous suspected infections. Its all part of the journey unfortunately.

Edited again to add - we will be on Neocate until Jessica is at least 1 when they will gradually try lactose and cows milk protein (which most people are allergic to rather than lactose apparently) to see if she is actually intolerant or if it was just that her gut was immature.

Sorry for all the edits - gee this baby brain is driving me nuts (that is something unfortunately that it would appear you do not leave in the NICU!!!)

 

[toothfairyx]

Hiya,
Congratulations hun! I'm sure everyone here can relate to how you are feeling. It is hard, but you will get through it for sure.
I was told it was unusual for the babies to get through SCBU without at least 2 courses of antibiotics, so this is all normal stuff, I know it's hard but try not to panic.
The breast feeding drop off rate is also high for preemies, as their demands are high and cos of the other issues so don't beat yourself up on that either xx

 

[alparen]

Congrats on your LO Samantha is 30 weeks and desats are normal .she has some pretty bad spells on her cpap but it is normal. She has them less if she sleep on her tummy the nurses have noticed so they try and keep her that way as much as they can but she is such a wiggle worm she flings herself around all the time! lol It is so hard to cope. When the monitor goes off and i am there i want to freak. but then i we just rub her and she remembers what to do. The worst coping is at home especially at night. I hate it i am always terrified my phone is going to ring. If my phone rings anytime i want to throw up. My way of coping is to look at all the pictures of her keep thinking good thoughts and watching all the videos of her to see just how strong she is. Calling the hospital and talking to the nurses anytime you feel uneasy. I call twice a day. JUst keep busy and lose yourself in something anything.. cleaning, tv, music,internet