Day 187 NICU and very slow weight gain

[fola_e]

My bubba Ciaran was born on the 25th May at 26 weeks exactly, weighing 640g. Its been a long, complicated road and still no end in sight.

His major problem has always been his lungs as they were very underdeveloped. His weight gain has always been slow and of course we need him to grow so his lungs will improve and then he can come home!! He's currently on Vapotherm in around 30% oxygen.

He is almost 6 months old (in 9 days) and 11 and a half weeks corrected age. He weighs 2.453kg. I'm really stuck on what to do. He was on EBM exclusively for the first 4 months with fortitifiers. Since I stopped expressing he has been on NP1, Progestimal and Pre Aptamil. Currently he's on 60mls of NP2 taking 3 hourly feeds (tube or bottle).

He has always tolerated milk, never had issues in that sense but now he's stuck in a catch 22 - the dietician will not increase the amount of milk as he's already on the max amount according to his weight. But his weight gain is so slow! So if they don't increase the amount of milk how is he ever going to grow??

Any advice? Anyone else have a prem baby as small as mine and successfully increased their weight?

 

[toothfairyx]

Hi,
sorry to heat this has been such a long time for you .
At our hospital once sucking feeds were established the weight relevance went out the window and the babies could have as much as they would take. It might be different because of the long-standing lung issues here but have you asked your consultant why this is the case, and why a dietician is making decisions in this case?

 

[Rachel K]

Hi

My little boy was born at 25 weeks weighing 670grams and has had problems with weight gain right from the beginning i think he put too much effort into breathing that he was just burning off all the milk he was getting.

At 6 months old he only weighed 3.05kg and they switched him on to some high calorie milk called Similac and since then he has done amazing and now at 9 months old he is a home (on oxygen) and putting on weight nicely weighing 5.12kg at the last weigh in.

So always remember you are not alone i know how frustrating it is when they don't put on weight and every weigh in just turns into a nightmare.

I hope you can get home soon - lots of luck!!

x x

 

[25weeker]

My little girl has always been slow to gain weight. In the first neonatal they had her on 200ml/kilo of ebm and fortifier. The second unit were horrified at this as they never went above 150ml/kilo but as a compromise they went to 175ml/kilo.

She was about 4 months old when she weighed the same as your lo so not quite as slow on weight. Her lungs however were ok which I think helped as your lo will be using up more energy.

My lo is still small. She is 22 months and just over 8 kilos but it hasn't stopped her in any way.

I hope your lo gets home soon xx

 

[Agiboma]

When we where in the NICU my LO had problems gaining weight he is a 25 weeker. The NICU but fortefiers in my EBM and also added MCT oil which really helped him to chunk up faster.

 

[fola_e]

Thanks for the relies ladies. My LO is 6 months old today! I suppose the more time that passes and the fact my baby is by far the oldest in our NICU, the harder it is to relate to other parents. I'm always being told by new parents 'wow your baby is so big!' And I'm like 'erm no he's not, he's 6 months and less than 3kg!'
Bless him, he is getting there..since this post he is now 2.74kg put on 190g in 3 days!

 

[clairec81]

Hi there, i've read your post and only just had time to reply so sorry its late! My LO was born at 33 wks but i had v v low fluid detected at 19 wks and my waters broke at 24 wks. The doctors had real concerns over her lung development, to the point that when arranging my c section (said she wouldn't make it through the trauma of a natural birth) they explained that they would get me to her asap so i could spend some time with her! Thank God she was only ventilated for 6 hrs and spent 6 wks in neo-natal. Our first year home was a real battle and she struggled to put on weight. At 11 months they discovered a large pda and she had it surgically closed and the docs were pretty sure she would 'pile' on the weight, she didn't! At 15 months she had rsv and was admitted to hospital and by chance a doc who specialised in resperatory saw her and an x-ray confirmed that her lungs were still small. Shee was placed on o2 and has been on it 24 hrs ever since. She has really came on and although still rally small (19 1/2 lbs at 23 months) she is slowly catching up. I know that you are fed up and want your baby home but looking back i am convinced that my LO should have came home on o2 and i think it would have saved a lot of what followed. I hope you start t osee some progress soon and contact me anytime!

 

[PleaseBaby]

Amelia idsnt put on weight with EBM and fortifiers. SHe stayed at 2lb 15oz untill she was 34 weeks (born at 2lb 8oz) When she started taking bottles NP/NP2 she was allowed to take as much as she wanted and she piled the weight on. She came home at 36 weeks weighing 4lb 70z