Newbie had my baby at 26+2 what a roller coaster of emotions

[Agiboma]

Yeahh Aaryan he has done so well with the weight, so proud of you little guy, i know the feeling moomof2kids i feel bad everythime Micah struggles because i had him early its a guilt i will carry forever. oday he had his eye test and he did not like it @ all

 

[mumof2kids]

These have been some of the worst days in hospital. On sat morning he was slightly settled he was on nasal canula for 4 hours o2 was between 0.05 lowest was 0.03ltr. Gases were great. But as the nurse was putting on his c-pap she found a swelling on his arm its a fracture. So now we know why he was crying so much. That night he was in so much pain he couldn't take it anymore. They kept fussing with him its not the nurses fault but he has to be on antibiotics so they have to keep pricking him to find the levels but he wanted to sleep that night he couldn't take it anymore his heart rate went down and kept desaturating badly they had to put him back on the ventilator early hours of sunday morning. I was horrified. I couldn't go to hospital for a few hours as I was so so upset so my hubby went. I saw him later that night and found out that whilst they did the xray to see if the tube went in right they found the other arm is also fractured. They kept weaning his ventilation throughout sunday and gases were good. Today in the morning they extubated him and he is back on cpap. Whilst they were analysing his arms they found yet another fracture on his wrist which is apparently healing which means it happened so long ago.

I am just so drained with everything. I can't eat properly I'm constantly worried and now I'm just so ill as my immunity has gone down. I don't know how these fractures have happened but I feel guilty as I handle him alot. He is in so much pain even though he has painkillers.

It's just a disaster.

 

[Anna_due Dec]

OMG!!! i've never heard of a prem getting fractures!! Is that common? I'm so shocked by that. I don't see how that can happen in a nicu. I've had two prems and i've never heard of this or seen anything happen that would look like it could cause a fracture. I know they're little but people are so gentle with them. Poor little man. mum of 2 kids, i highly doubt you would have caused that, maybe they should investigate. Agiboma have you heard of this?
Seriously in a year you guys will look back on your experiences and they will be a distant memory as your little boys crawl around your floor and wreck anything they can get their hands on. The experience is horrible but they forget and you will stop giving it much thought as they grow and leave it all behind them. There is a happy ending I swear.

 

[25weeker]

poor wee aaryan. Have the doctors said how long he has had the broken arms for? Not what the poor wee man needs.

My lo shoulder started to swell a couple of days after she was born. An ultrasound showed she had a fracture at the top of her arm probably caused by being born breech and she had her arm up around her face when she came out.

She was seen by orthopaedics due to it's location and they said to keep the top part of the arm down by the side allowing full use of the bottom. Due to her skin still developing they couldn't just strap it down so they tried many weird and wonderful ways of keeping the arm down. Holly had other ideas though and as soon as she felt something on her arm she fidgeted until she could have the arm above her head which was her favourite position.

Despite all these 'blue peter' straps the arm never stayed pinned down and the fracture still completely healed.

Not that it's much comfort but the doctor told us that if there was a best time to break a bone it's as a baby because it's not actually bone yet it's just cartlidge.

I don't think you handling him would cause these so try not to blame yourself. You have and still are going through a really rough time and I hope things start to settle for you soon.

I hope you get some answers.

Take care xxxxx

 

[mumof2kids]

The Drs say its common but the nurses keep apologising to me so they are feeling guilty as the handle him, so I don't know why or how it has happened. The fractures in the arms are very new as they have not started to heal as yet. But the wrist has started to heal but as it was not noticed it looks a little bent which my hubby is not happy about. So they will do yet another xray to check how it has healed.

They put splints on the arms and he is very upset by it all. He is on more o2 now for the pain he keeps crying and desaturating. Also he has an infection which don't help. Today I have a really bad cold so I can't go in as I'm scared to pass it on to him so feeling rather helpless. My hubby will go after work and spend some time giving cuddles which he loves.

Miss him very much and hope he gets better soon. All this pain is too much for a little boy. And more he cries more o2 he needs, he won't be able to cycle and everything delays and the more he is in hospital the more he is prone to other problems so I'm not very happy. Just want him home so soon.

 

[Anna_due Dec]

I really feel for you as you guys have just been through so much. I think you've had the most difficult ride of all the prem mums i've listened to. You honestly deserve a mother of the year award for being tough enough to get through such a difficult time. It's easy to say but try to keep positive. Look at the 'then and now' photos to remind yourself there is an end to all this. Statistically prem babies are quite gentle and are lovely little children and often end up in 'caring' jobs such as doctors, nurses etc The future is good...you just have to drag your way through this stage xoxoxoxoxox

 

[Agiboma]

so sorry to her about Aaryon's suffering. was on the verge of tears when i read the post, so understadibly upsetting. i have never heard of broken limbs in NICU. I really dont know what to say except that this NICU expreince will soon come to an end and your LO will come home and you can give him all the love in the world, these premiees are so much stronger than we give them credit for. I really hope you get over your illness and can go back to see him really soon. so much for you mamma, just hang in their a little longer.

 

[mumof2kids]

Thanks everyone for all your support! It's a very testing time for all of us right now. I'm just holding on to hope and praying this time passes really quick. He is so small and I can't imagine so many fractures on a little baby. My husband is distraught with it all.

They are going to keep xraying and checking how the arms are healing and if they are healing in the right manner as sometimes bones don't and then you need corrective surgery at an older age.

On a good note he is still on cpap not cycling at the moment which I think is best so he can reserve all his energy for getting better, maybe next week we can start again. Weight is going up so that's good news.

I have the flu so I have not been able to go in for the past two days which I hate but again have no choice over.

Please tell me how everyone is doing. I'm still hoping end of nov early december I have him home.

thanks again everyone, this is the toughest thing I've one through in my life and its so draining.

 

[Agiboma]

yes every nicu parent knows how hard the experience is. but your LO is a fighter and he will be home with you soon mamma, my Lo is still in the hospital dr, says possibly another week

 

[mumof2kids]

What is little Micah up to now? What are the Drs wanting before discharge? It's definitely tough but when you can't go to visit your own baby u just feel so low. Resting as much as I can but I just don't seem to get better and when I phone and find out he is crying my heart sinks that I'm not there to give him a cuddle

 

[Agiboma]

Ohh yes I know the feeling my little MIcah has a spell a few days ago so everytime he has a spell they add a week on befor discharge so if my Micah stays "Brady" free for 7 days we get to go home

 

[mumof2kids]

Hey i do hope that he sails through the next seven days and gets home quick. You must be so anxious. I'm still struck down with the flu so not going in its so hard not to see him but the nurses keep reminding me that he will get very ill if i do come in contact with him. Not much has changed they started giving oral morphine for the pain as he kept crying a lot. So due to that they won't restart the cycling.

 

[Agiboma]

ohh so sorry to hear about your sickness and the morphine but once he gets off the pain meds he will be able to restart the cycling so dont worry

 

[mumof2kids]

I hate this flu its just not going and I'm getting impatient I want to see my baby and can't its nearly been a week!!!! I'm going insane at home!

I've been told he is doing well but he had an infection and needed 3 canulas this week as everyone they put he kicks it off! He had 30mins off cpap last night and nurses said he coped very well so thats great news for me.

The Drs said they don't want to start cycling and rather want him to get bigger and stay infection free. But I personally believe he needs an hour or 2 off everyday how will he know that this is what he needs to do. He has had 4 hours on nasal canula at 0.03 o2 and he saturated very well.

I don't know what the next step is as he is not really growing very fast and its frustrating me.

 

[Agiboma]

I was away from my Michael for one day and o went crazy so I can't imagine how you feel. Have you suggested to the doctors about keeping him off more often or at least more time on the low flow. I hope you get better soon so you can go see your little sweetness, hang in there mamma

 

[mumof2kids]

My hubby spoke to the Drs who said they want to concentrate on only him growing. But to be honest it was never the Drs decision to cycle him it was more of a joint decision between me and the nurses and luckily it worked. So I'm gonna leave it until next week sometime once I am there and will suggest to the nurses straight if they can put nasal canula we were on low flow oxygen so maybe its what he needs. Until then he can relax on CPAP he is mostly in air so that's a good thing. He just needs to grow quickly. Such a long slow process!

 

[Agiboma]

yes i no the feeling all 2 well, but it wont be much longer

 

[25weeker]

I hope your feeling better and get to the hospital soon.

My lo weight slowed down when cycling of cpap and slowed even further when coming of the oxygen. It's because they have to work harder than babies without cld.

What weight is he now?

Xx

 

[mumof2kids]

He is now at 1.6kg he has had 3 weeks of practically no growth when he had steriods and stop starting his feeds. At the moment he is on full feeds and no they not properly cycling only 30mins to 1hr off as they want to concentrate on growth so I'm sure he will put on weight and once his fractures start recovering well we can restart.

His antibiotics will stop tomorrow and they have already stopped the morphine. He still needs some o2 between 21 to 24 so not too bad.

I had to go to the Drs who said I have some infection and I've started antiobiotics its been 8 days since I've last been and seen my Aaryan. I'm getting so down about it all but my hubby goes after his work and keeps me updated. The only good thing is that I'm getting to spend more time with my daughter which I've missed for a long time.

Tough times I'm still inside hoping that he comes home end of nov early december. Not sure if I'm being too optimistic or not.

 

[mumof2kids]

Just found out that Aaryans eyes have got worse both eyes Stage 2 Zone 2 A couple of weeks ago it was Stages 0 and 1.

I don't know what to make of it all. They are repeating in 2 weeks time, I can't understand why they are waiting so long before another check he is mostly on minimum o2.

He is 40 weeks tomorrow, when do they stop checking the eyes? Can't believe he was due tomorrow, feel so emotional about the whole thing!