A little support

[freddiesmum]

Hey all,
I had my little man 4 weeks ago he was 27 + 4 weighing 2lb6oz. I suffered from spprom at 23 + 4 and then 4 weeks later, being monitered due to bleeding they noticed he had fetal bradicardia and they whisk me off for a emergancy crash section.
At birth he suffered two deflated lungs and was ventilated, they tried to take him off the ventilator 24hrs later but failed, another attempt the day after was successful and he was put on CPAP, he has since come off CPAP completely and is now in his incubator in air.
So far he is doing really well but suffers from severe bradys and desats, some of which he recovers by himself and some of which he needs oxygen n a good poke!
He is now out of ITU and in the nursery, where he is the smallest and youngest, by age and gestation. watching all the other mums feeding and holding their babys and some leaving with them tears me up inside with jealousy.
although my family n the nurses are a great support they dont know how it feels to have a preemie and the daily stuggle to keep yourself and the family together and so was looking for someone to "talk" to!

 

[pink.crazy]

I can soooo relate to what you're saying honey. Leo was born at 28 weeks after I suffered PROM at 25+ weeks.. he spent what felt like the LONGEST time in the nursery.. they turned the nursery into an extended HDU and he was in there for weeks, always being the youngest and smallest. A baby (who is now his "best friend"!) moved in one day, and his Gran came up to me Awwwww'ing over Leo, then asked how old he was, when I replied 4 weeks she was shocked. Her grandson was the same size/had made the same progress and was only less than a week old. I felt like crap.
My little man also suffered with desats and bradys (needing oxygen on average twice a day) they only really stopped at 34/35 weeks, something just clicked!
ANYWAY! Are you on Facebook? If you are feel free to add me.. search Amie Storm (it should come up!) I have lots of pics of my little mans journey and am usually about for a chat if you need it

 

[freddiesmum]

thank you so much, i have added you on facebook, haylie lowe! x

 

[pink.crazy]

thank you so much, i have added you on facebook, haylie lowe! x

Is Freddie in LRI???

 

[freddiesmum]

yeh he is, he is in the nursery

 

[AP]

hi hun
im sandi, we had alex at 27+4 too, she came home just before her due date :wave: shes now 21 months actual age, and doing fab.

xxxx

 

[katy1310]

Hi

I can completely understand how you are feeling...Sophie was born at 27 weeks and spent 12 weeks in neonatal, and I know how it felt watching other babies being cuddled, fed, going home....it felt like we were there forever!

Sophie was the same with the bradys and desats, and something with her also just "clicked" - I think it was around 38 weeks that happened for her. The community nurse wanted to send her home on oxygen but the consultant said it wouldn't be appropriate and that it was just a case of waiting for things to click in her brain and she'd be fine - and he was right!

I will add you on fb too if that's ok! I'll say who I am when I send the request! I'm also about on there a lot if you need a chat at all.
xx

 

[vermeil]

Hello! *hugs* I know how very hard the first few weeks are. My little guy was also a 27 weeker, though he had the weight of 23w. At 1 pound he was the smallest in the unit (despite it being a hospital specialized in 'super preemies') for quite some time. He was at the far end of the unit, with the other tiny babies and the 'extra care' ones, which had special conditions. To go visit him I had to cross the intermediate care unit, then aaaaaall the way through the other rooms where I saw mothers holding their babies. I`m glad though in a way that the other 3 babies in his room were always at about the same stage so it wasn`t 'in your face' heh, if that makes sense.

(I admit though I was never jealous of the other moms I saw - my baby was doing so poorly at first I just wanted him to survive, hour by hour. I was barely hanging on myself. I remember in my own hospital room, the other new mom was bawling her eyes out, crying for hours on the phone with her family because her 34 weeker had jaundice and needed a lamp. I admit I secretly resented her because dang it my own baby was fighting just to survive, he would flatline regularly and they were having trouble ressuscitating him every time. Secretly I was sooooo angry at that other mom. I would have traded ANYTHING to have a baby with mere jaundice who would spend mere days in the hospital. I tried to empathize and tell myself her suffering was just as valid as mine but well I didn`t always succeed . I had similar reactions for months and months, for example to young mothers shopping for say furniture and getting upset because they couldn`t find the color they wanted. I SOOOO wanted to yell at them and give them crap, at least they had a HEALTHY baby at home! GRRR.

So on a positive note having a preemie redefines our priorities and sets them straight. Never again will I moan the small stuff in life. Heck I had a driver intentionally hit my car because I had dared honk at him. I shrugged it off and didn`t even care. Before I would have been livid

But! Back to your little one. If he`s already off cpap that`s very very good! Mine was ventilated for weeks, off and on, then on cpap for oh months. He had desats and bradys for 4 months. Though I was able to start holding him in extended kangaroo sessions when he was still tiny and ventilated. I`m soooo grateful the nurses would patiently take the time to untangle all of the wiring and carefully hand him over, then reconnect everything. It would take them SO much time, and they almost never refused even when they were super busy.

I know it`s very hard but just get into a routine and the days will fly by. Take daily pictures and in no time you`ll be amazed how quickly he`s grown. (just look at the link in my sig if you want to see crazy change in a few weeks ) Then before you know it he`ll be one of the bigger babies in the unit and you`ll be able to reassure parents going through the same 'adventure'. That actually really helped me - when I had just arrived the mom of a 24 weeker (who was now approaching due date) chatted me up and it REALLY helped me to hear her daughter was doing great. Similarly I chatted up other parents who were going through this also, after me, and I think it was very therapeutic, for them AND for me.

Our babies are extra special and we have the great priviledge of watching them grow and thrive before our very eyes.

Here he is now - does he look like he weighed one pound?

https://nova.polymtl.ca/~miadel/vincent/mars2011a.jpg

Hope my (long winded) answer will help you some! *hugs*

 

[freddiesmum]

Thanks for sharing your stories guys! Its good to hear the positives and makes me realise there is a light at the end of the tunnel, although its gonna take some time to get there! I hope you are all well! *hugs and wishes*

 

[bob2331]

Hey,

I completely understand where you are coming from but i can assure you there is light at the end of the tunnel.

Harry was born at 24+2, semi prom at 20 weeks, he spent 102 days in hospital. He was what was know as the desat king! He just couldnt seem to get him breathing right and was up and down like a yoyo. Bradies were normally only during feeds or pooing.

Every baby that i met through the journey, suddently got to about 36 weeks and their bradies and desats just stopped. Its like a little light blub went off in their heads that they needed to breathe all the time all themselve.

Harry needed a new light blue because his was broken, he came home on oxygen in the end, to help with the desats but then all of a sudden, at 7months (3months corrected), the liught blub went off and the oxygen was good and now he is nearly a year old and is a little cheeky character xxxx