When your prem baby continues to be poorly as they grow...

[DonnaBallona]

Jude was born at 31weeks due to me having severe pre eclampsia for the second time. He was born with respiratory distress and has Chronic Lung Disease.

Jude has been a poorly baby right from the start. He has overcome loads of bridges to be here and I am incredibly proud of him.

Now; Jude is still a poorly baby- he had a consultant appt on Monday who is not happy with his progress (and honestly- nor am I.)

Jude is being sent to London to have lots of tests done by a specialist.
I am incredibly nervous about this-I guess a fear of the unknown and possibly a fear of the outcome.

has anyone else got an older, poorly prem that can put my mind at rest?
I'm not even sure what I want to hear from anybody- just feeling a bit mixed up, worried, nervous....you know how it is! x

 

[Dinah93]

My 28 weeker had an unexpectedly bumpy road, ended up being the second longest staying baby on the ward ever at 101 days. Her issue was her lungs too, despite having had steroids. One of her lungs kept collapsing, in the end they did surgery to remove it. They actually diagnosed her with ACD after surgery to remove half her left lung. ACD is a universally fatal condition within the first few weeks of life, and yet she just turned 16 months old. Even when they come up with a scary 'certain' diagnosis they're not always right with preemies.

 

[Pink_Sparkle]

I just wanted to offer a hug. Ive no experience of what you are asking. My LO was born at 23 weeks, he has CLD and hes still in the NICU - hes 88 days old and slowly being weaned off high flow oxygen.

Is Jude still on low flow at home? xx

 

[bumpsmum]

aww Donna just catching up and seen this! Jude is a toughy he's proved that time and time again. Whatever life throws at him, that wee determined dude will overcome - just look at Brooke..........Just adore this wee guy so much and even tho we've never met I love hearing how your wee family are getting on! Stay strong bird!!

ps. Matthew's wee nap u kindly sent us nearly 4 years ago is safely tucked away in his wee keepsake box. Stay strong mumma xxxx