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

[Agiboma]

hi mamma
yes i know its tough now and i know not seeing him ofr 8 days must be driving you but i have been told that its normal for their ROP to get worse befor it gets better, with my Micah it was always stage 1 zone 2 then it changed to stage 2 zone 2 and that lasted for a little over a week then it has gotten better to stage 1 zone 3 the doctors say it needs to be checked up until 42 weeks, but hang in their it will be better soon mommy

 

[25weeker]

I hope you are feeling better and your lo has been improving.

I had a look at my lo weight gain and at 35 week gestation she weighed 1.7kg and this is with her only having her feeds stopped on a couple of occasions for a few days. As your lo has had his feeds stopped for quite long periods and is 1.6kg hopefully once feeding again he will gain weight well.

There is a few mums on here who's lo's have been treated for ROP who can help you with that.

I hope things improve soon and you get a quiet period with less stress as you all have had a rollercoaster journey xx

 

[mumof2kids]

Hi,

I'm still ill!!!! still on antibiotics. I'm hoping to go tomorrow. He was cycling yday for 2 hours on nasal canula but did not have a good gas so no cycling today but they are starting two hourly feeds. I'm just fed up with the whole thing. Such a slow process... he lost weight again until they upped his total feeds and has started to gain weight. I'm just tired with the whole thing.

 

[Agiboma]

I know what you mean but our babies will be home with us soon enough just tryto stay strong for his sake

 

[mumof2kids]

I know I have to but it's so hard. December is coming and I know I shouldn't have any date in mind but I just want him home.

How is Micah doing?

 

[takingforever]

Just read your whole post and omg i could of wrote it myself i am going through the exact same thing at the min with my little man He was born at 27+4 but my waters broke at 22 weeks and although i had the steroids they didnt work as i had no fluid Our lo has just had the steroids and came back off the vent very quickly but as soon as they stopped his oxygen has crept right back up to 50-60% so he is being checked for infection and to see weather he needs a blood transfusion (get results after 8) and if they are clear they are concidering more steroids which i didnt want but if he needs them i have no choice I think its the cld tbh as x rays show its getting worse x

 

[Agiboma]

Micah has severe reflux it's so bad that he chokes and sometimes needs air to recover so we are sorting it out at the moment so I just have to wait until he is over it

 

[mumof2kids]

Agiboma, I do hope the reflux gets resolved but atleast u know once it is sorted you can take your lil man home, sending lots of positive energy that he comes home fast! x

Takingforever, I know the feeling. If you don't mind me asking what weight was he at birth and now? They gave my lil one steriods at about 36weeks and luckily it worked and he has been on c-pap for 4 weeks only once back on the vent since, for a day as he as got very upset with the fractures and it caused him alot of pain. Severe CLD is a tough for babies... and something which won't go away quickly but with time will improve and new lung tissue will carry on growing until they are 6 years old I was told. My Aaryan has severe CLD and was on steriods for 10 days. It's what he needed to get off the vent. They did warn me once the steriods are complete he may go back on the vent so its common and also that o2 can creep up. Your lil one is 33weeks gestation so he still has many weeks to grow and hopefuly lower his o2. I do hope your lil one doesn't have infection as the steriods do repress immunity and infections are more likely. My lil ones o2 did go up slightly to 30's but for the last week he is mostly between 21 to 26. I also wanted to add that the although the Drs said he has cld the xrays are not always so accurate and they try and look at the baby more to make decisions. Fingers crossed for u that your baby lowers his o2 and does well on c-pap. Can I ask his he on ncpap or biphasic mode?

He has still a very long way to go, lots of cycling to get him off cpap then probaby will be on nasal canula and then we have to feed him every 2/3/4 hours which he has to tolerate. Gain weight, maintain his temp. So much still to accomplish and here I am wanting him home in six weeks, I think I'm being over optimistic hey?!

 

[25weeker]

A lot can happen with these lo in 6 weeks so you might get him home.

Holly was eventually transferred to Edinburgh at 33 weeks gestation. She weighed 1.32k, wasn't cycling off and on 2 hourly feeds. She came home 2 days before her due date so in under 7 weeks she came off cpap, then off oxygen with the canula, moved to 4 hour feeds and put on nearly 1k.

I will keep my fingers crossed it happens.

Xx

 

[takingforever]

Agiboma, I do hope the reflux gets resolved but atleast u know once it is sorted you can take your lil man home, sending lots of positive energy that he comes home fast! x

Takingforever, I know the feeling. If you don't mind me asking what weight was he at birth and now? They gave my lil one steriods at about 36weeks and luckily it worked and he has been on c-pap for 4 weeks only once back on the vent since, for a day as he as got very upset with the fractures and it caused him alot of pain. Severe CLD is a tough for babies... and something which won't go away quickly but with time will improve and new lung tissue will carry on growing until they are 6 years old I was told. My Aaryan has severe CLD and was on steriods for 10 days. It's what he needed to get off the vent. They did warn me once the steriods are complete he may go back on the vent so its common and also that o2 can creep up. Your lil one is 33weeks gestation so he still has many weeks to grow and hopefuly lower his o2. I do hope your lil one doesn't have infection as the steriods do repress immunity and infections are more likely. My lil ones o2 did go up slightly to 30's but for the last week he is mostly between 21 to 26. I also wanted to add that the although the Drs said he has cld the xrays are not always so accurate and they try and look at the baby more to make decisions. Fingers crossed for u that your baby lowers his o2 and does well on c-pap. Can I ask his he on ncpap or biphasic mode?

He has still a very long way to go, lots of cycling to get him off cpap then probaby will be on nasal canula and then we have to feed him every 2/3/4 hours which he has to tolerate. Gain weight, maintain his temp. So much still to accomplish and here I am wanting him home in six weeks, I think I'm being over optimistic hey?!

Hiya no i dont mind you asking questions at all at birth he weighed 2lb 10oz and on sunday he was 3lb 10oz (due to be weighed tomorrow) but as of yesterday he is just on pre aptimil as my supply dryed up dr seems to think its stress related.
Yeah L'Angley had the steroids to get him back off the vent a 10 day course he went back on to normal cpap but is now on biphasic mode as he was bad over the weekend
But the good news is he doesnt have any infections but they are carrying on with his antibiotics till tomorrow just to complete the 5 day course he is on hourly feeds 12ml as he is a really windy baby and desats quite badly with 2 hourly.
The drs are pretty convinced he has cld because his x rays are always different ? and we were told lungs grow up untill they are 7yo (think every dr had different opinion lol)
We had our weekly meeting with the consultants today and they recon he is stable (hate that word) on the bipap and he just needs to grow and as he grows his lungs will get a bit better and require less oxygen and as he requires less oxygen the plan is to get back to cpap then wean off the cpap slowly (but that could be weeks off)
I want my lil soilder home for xmas but even at that i think im being over optimistic too as there is so much to do in a short space of time in a way i feel like im wishing his life away but wanting a fast forward button (people call me selfish) but as long as hes healthy and happy i couldnt ask for more really xxx

 

[mumof2kids]

25weeker that is absoultely amazing your lil girl did so well in such a short period. I do hope Aaryan can do it. I'm just praying he does. He has 2 hours off cpap today still on 2hourly feeds. Got nappy rash but that's not serious. I just hope he carries on his hard work. Thank you for your message it gives me some hope that it can happen, I just hope its before xmas day my daughter bday, I keep having nightmares of going to hospital on xmas and not being able to spend it all together with my family I so want him home for her 5th bday.

Taking forever, first your son had a very good birth weight and even his current weight is fantastic, that is what my son weighs now at 40 weeks 3lb 10oz. He had lots of stop starts with his feeding and then with the steriods and less milk he has not grown very well not to add he was severe IGUR born so small didn't help. But its true as they grow new lung tissue helps them with their breathing.

I'm glad to hear that he has no infection, and being on biphasic isn't too bad atleast he didn't have to go back on the ventilator. The consultants told me its a very long process one of the consultants decided to compare my baby with babies on the ward who have been here for over a yr or even 2. That really made me upset. What I have found is Drs give u the worse case possibility and you just have to hope to God that it doesn't happen.

Also I want to add your not selfish at all wanting your baby home before xmas, my bday is on dec 16th my daughters on the 25th xmas day I'm desperate for him to be home. Wishing you lots of luck that your baby does well. xxx

With CLD babies they take everything very slowly as they work really hard in breathing, I can see that with my son he recesses alot but they generally check his gases to see how he is doing which gives them alot of idea of this progress.

 

[takingforever]

I know how frustrating stopping and starting feeds is it makes me so mad because my lo always gets stopped for having a big belly aka cpap belly but it takes them a whole day to figure it out grrrr x
Well my lil man was weighed today and tipped the scales at 4lb exactly i was gob smacked 6oz in 3 days at this rate by saturday they will have to change his milk as he should be 2kg.
my lo recesses loads too but gases are always ok so they dont seem too concerned.
How is your lil man today hun xxx

 

[mumof2kids]

hiya well lots of weight gain and then 2oz lost so now they upping his feeds yet again! I think its cos he is having bm rather than formula, my daughter never gained alot with my bm either. I think very soon if he doesn't pick up formula is the only way. I went yday and he looked amazing so much bigger and brighter he behaved so mature don't know if i can say that but he looked like a different baby! He so now looks like my daughter lol! Long curly eyelashes!

He had time off yday and needed 0.02 o2 so they giving him 4 hours off today. I'm meeting with the consultant so lets see what happens!

Well done to yr lil man on gaining weight keep it up!! Is he back on cpap? xxx

 

[Agiboma]

glad you are feeling better and AAryon is doing great

 

[takingforever]

Yeah they have decided to put him back on cpap today but hes working really hard on it but they had to change from bipap because he was fighting against it My lil lad does sure know how to get his own way and hes had the nurses run ragged today did make me smile though
So now hes going to have an xray see if there is any change and go from there but i think the dex is going to be used again...
Can they not put fortifier in with your breast milk as L'Angley didnt gain much weight in the 1st few weeks so they started using cow and gate breast milk fortifier and the weight gain was steady at about 1oz a day (worth asking)
Ill update again later when i get his results xxx

 

[mumof2kids]

How is lil Micah doing? Is the reflux any better? I hope there's some improvement with it. So when he first started bf did he have this reflux

Taking forever, I hope the xray results are better and things improve. I know we don't want our kids to have the dexamethason but it does work. But do u have to give the steriods if your lil one is on cpap do u think he just needs some time to adjust?

Aaryan is ok, he had four hours off yday o2 was between 0.02 to 0.03 mostly 0.02 he looks and behaves so differently now and he is so relaxed. We found out that he has some bugs up his sputem but they are not treating, also his arms are healing. He is maintaining his temp very well and wearing clothes. The consultant said she wanted to move him to 3 hourly feeds but her priority is to get him off cpap so slowly will keep trying to increase his time off until he is ready to be off. She also mentioned he MAY come home on oxygen, the same lady told us 6 weeks ago that he WILL definitely come home o2. Such change! And as usual I always ask when can he come home she said she thinks more than likely Dec/Jan but he may surprise us and come home end of november. I'm just praying things so well and he gets home fast!!!

Oh and Aaryan is on full strength fortifiers in his milk I'm only worried now his milk demand is much more than my supply so I'm slightly stressed that I won't catch up

 

[Anna_due Dec]

Sending heaps of positive thoughts you'll get him home for Christmas!! The expressing is so stressful..just remember, drink heaps of water. goodluck with everything.

 

[mumof2kids]

Thank you so much Anna, xmas is more special with it being my daughters bday, it would be the best gift ever for my whole family! Fingers crossed he carries on his excellent work! I know expressing makes me so thirsty I drink alot of water. I'm gonna carry on and see how it goes, consultant said they make mix it up with formula but for now he has bm as I was a few weeks ahead of him. I'm taking domperidone too but some how not able to get the amount he currently needs. Any other way to increase bm?

 

[Agiboma]

i eat a lot of oat meal and it works well for me to increase bm, Micah is doing well hopefully the end of next week we will be home **fingers crossed*** ill keep everybody updated for sure

 

[mumof2kids]

Thanks, I will try that... I'm so happy to hear that Micha is doing so well, how much does he weigh now? Fingers crossed from me too that he does come home quick.