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



## mumof2kids

Hello everyone,

I've had quite a pregnancy. My last pregnancy I delivered a lil girl at 32weeks she weighed 3lb 6oz due to preeclampsia she did extremely well breathed on her own just needed to gain weight and drink from a bottle and 25days later was home. This pregnancy however was very scary at my 21 weeks scan I was told baby has not grown well and two weeks later at 23weeks when I was rescanned by fetal medicine Dr I was given the worst news baby has barely grown severe IGUR weight only 370 grams and I was given three options his 1st on was baby will die inside me, 2nd was baby will grow slightly and delivered early with many problems and will probably won't survive and the 3rd if your lucky your baby makes it to 28 weeks. I was heartbroken at the time and couldn't believe it. From then onwards at a scan every week and some how baby started to grow slightly but had absent diasotlic flow, which by 25+6 weeks reversed but the heart and brain was not affected so I was told to come back in another week. I disagreed and said I want to be rescanned in 3 days, he said I can scan you but I won't change my mind that even if the flow has gotten worse we won't take the baby out and let nature take its course but I ignored his comment and said I still want to be scanned. So 26weeks and 2days arrived I could still feel the baby move and was in two minds in going in as its very depressing to keep hearing negative comments about your baby with no happiness but my hubby was adamant we should go for the scan we won't be able to forgive ourselves if something has gotten worse. So the scan showed the flow had totally reversed and was causing swelling on the heart and brain now we had 12-24 hours to decide, estimated weight was 557 grams they said the baby would not survive and if he did then we would be severly disabled and a million and one other problems. We decided which we thought all along which was that we want to deliver our baby. I had a classical c-sec that night as baby was really small and wanted to deliver him in his amniotic fluid. He needed resusitation but accepted it and breathed he was over 600 grams about 1lb 5oz.

It's been 6 weeks now that he is in NICU and going through a few problems. Because he was IGUR they believed his bowel was not going to function well but luckily is taking full feeds well. His brain scans are all normal with no bleeding. He has grown well from 600 grams to now 1200grams. He is suffering with infections frequently which is hindering him alot and the worst bit is that he still needs the ventilation due to having alot of secretions he keeps desatting and then he needs more o2 about 40%. His PDA is still open which they have now started meds on and I'm praying that it closes and he does not need an operation as it's affecting his blood o2 levels which is keeping him more on the vent. I know he will grow out of using the vent but its been a long road and does not seem to end at the moment. But I'm so glad with a the decision me and hubby made and used our instincts rather than the Dr's without it our lil baby boy would not have entered the world. He is a brave little fighter as all premature babies are.

Is anyone else going through this long process of getting of the ventilator??


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## katy1310

Hi

I didn't want to read and run even though Sophie wasn't on a ventilator for very long. She was on CPAP for 10 weeks and I was starting to think she was never going to get rid of it but all of a sudden she just started not to need it.

You've had such a tough journey and you're so brave. Just shows that it doesn't always pay to listen to the doctors and you should trust your own instints.

Hope you are ok, it's such a rollercoaster of emotions - I remember that so well even though Sophie did well right from the start. She was just 1lb 13 when she was born which is pretty small for 27 weeks but she's now doing brilliantly and getting so big. If you want anyone to talk to about the emotional side of having a baby in neonatal, feel free to pm me.

Huge hugs to you and your family. xxxxxx


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## 25weeker

Congratulations on the birth of your brave little boy.

My lo was born at 25+2 weighing 659g and was ventilated for 4 days initially then at 4 weeks got sepsis and was ventilated again for 5 days so can't really advise on the long process of getting off the ventilator. I know some babies on the unit who's PDA meant they couldn't get off the ventilator so fingers crossed once his PDA closes he moves to CPAP.

When my lo PDA was large her oxygen requirements where higher and swung all over the place.

The journey in nicu is a rollercoaster with many steps forwards and backwards. 

Any questions these forums are great as there is usually someone who's had a similar experience.

Take care xx


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## mumof2kids

Thank you for your replies... yes he is brave has fought on through it all. I'm glad your kids got off the vent pretty quick or didn't need it at all.

At the beginning he did really well on the vent and past 7 days old they decided that they wanted to try him on c-pap but docs held back and with in a day his lung nearly collapsed and he had some inflamation then was put on HVO for nearly two weeks then he had secretion problems which still have not resolved rather worsened as its thick yellow so that's not helping to wean off the vent. And the best thing to get rid of the secretions is to get off the vent so its a vicious cycle for him. His PDA has been open but before it was not affecting his lungs but putting a strain on his heart which would have meant he would have had pulmonary hypertension but the beginning of the week the flow reversed and is throwing unpure blood around his body and lungs thus he keeps desaturating he has been a stable boy from the start it's only now he is doing this and its scary as they did his cares yday and his hb dropped to 40's and o2 saturation to 17 it was horrible to see your child like that and when they suctioned him they found a really yellow thick secretion which we would have just coughed out but what can a lil premature baby do. He was on CMV for past two days but Drs decided to move him back to PTV they trying again to wean. It's just heartbreaking to see him like this.

And juggling going to NICU plus looking after my 4and half year old girl who is on her summer holidays is just so tough! It's very emotional for me and my whole family.

I'm sure you all have been through all the emotions and more... but its definitely good to talk about it with someone who understands.


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## keldac

firstly congratulations :flower:

I know it is a huge rollercoaster - I have been there twice. All babies are so different and they come off the ventilator at different times. My girsl were on for 7 days and 5 days. However, my friends little girl was on a ventilator for 8 weeks and she had steroids to bring her off. She is 8 years old now and fit and healthy :thumbup:

I wish you and your miracle a quick and speedy recovery xxxx


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## Agiboma

congrats hun on your brave LO he is a great fighter, and has gained excellent weight, i hope the meds work for the pda cause pda can be the cause of his desats and also him depending on the vent, my little one had pda surgery yesterday and is doing great, also fyi the meds are not very effective when babies are over a few days old just wanted you to know


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## mumof2kids

Hi yes you are right I have read that the meds are usually more effective if used within 14 days of birth. But as my baby was IGUR very low weight and did not get enough blood supply to his gut they couldn't risk using indomethacin as it could have compromised his gut at that stage. It's a risk but I can only hope that the PDA closes, I will find out on tuesday even if it closes slightly they will start another dose. But yes surgery is always on the cards... please tell me your experience of the surgery how long it takes when could you see your baby etc. 

Thanks


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## 25weeker

My lo was 3 weeks old when she started the medication as her PDA had been small initially. Another baby on the unit who was the same age and gestation was starting their second dose at the same time and the second dose closed it although the doctors say it's not very common for the second dose to work.

The hospital I was in was actually carried out the surgery in the unit.


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## mumof2kids

That's really good at they do it at the unit. But for us they said even though they are a level 3 NICU they don't do PDA surgery there and we have to transfer to another hospital in London. To be honest I'm just first hoping these meds work and taking a step at a time. Has your babies had any side effects of the surgery cos that scares me the most?


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## 25weeker

My lo didn't need the surgery. After the first course hers hadn't closed and they started discussing surgery. However she got an infection and once the infection cleared her PDA was small again so it was the infection that had kept it open. Right up until discharge they could hear a slight murmur but at her 6 week check they couldn't hear it anymore so they said it has closed.

I know other babies who have had the surgery and have had no adverse complications from it in fact they have came on loads since their PDA was litigated.

Fingers crossed the medication works.


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## mumof2kids

Thanks... yes I'm hoping that too. His PDA will quite wide but the Dr's said that even if it partially closed that would be a good thing and then they would attempt another course it's his fourth dose today, two more to do. Its' pretty nerve-wracking at home thinking about it. Sometimes I feel I shouldn't keep phoning the hospital to find out how he is doing cos most nurses are pretty stroppy on the phone and then it makes me even more upset I call about 3 times in a day, is it too much? Once in the morning to see how his night was once after Dr's done their rounds and about 4/6 hours after that, so 7-8am, 12pm and 6pm. After that my hubby comes home and my lil daughter is asleep i go and see my baby. Just wanted to know have u ever come across it... sometimes i think twice should i phone or not for an update... all i get is everything is the same... but how would i know at home if it's the same or not... afterall he is in NICU and its intense things can suddenly change in a second.


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## mumof2kids

Oh and I wanted to say that it's very good that your lil baby didn't need the surgery, my lil one just overcame an infection that's why the started the meds. It's hard to tell what's happening in their little bodies... but what ever happens, it happens for good. The Dr did say that most PDA closes close to term so it happened for lil girl. 

How old is she now?


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## 25weeker

I don't think you are ringing too much because as you already know things can change quickly. It is always good to know what doctors are saying after their rounds. Try and ignore them if they are stroppy as it's their job and you aren't putting them out. If any are particularly bad then complain to the nurse in charge that evening.

I actually delivered in Bristol but am living in Edinburgh so for the first 8 weeks until we got transferred I stayed in the Ronald McDonald house across the road so was in the hospital most of the day and never needed to ring. It must be extremely hard having another child to look after as well.

My lo is 17 weeks corrected and 32 weeks actual now and doing well. She is still tiny at 10lb 5oz but is plodding along on the 0.4th centile. Weight gain has always been a bit slow as it took her nearly 7 weeks to get to a kilo and then they put her on breastmilk fortifier to speed it up.


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## mumof2kids

It was ok when I was in hospital as I got to see him within 24hours, not like my daughter whom I didn't see until 2 days as I had severe pre-clampsia and they wouldn't let me move around at all. But now being back and my daughter started her summer hols when he was born so she is having a rough time cos she wants to do things and I'm still recovering and its hard to build a good mood when you are worried and anxious. Still I'm getting alot of support from my parents who are taking my daughter out and about. 

When my son was born he was on the 2nd centile and now he is just under the 2nd centile, they are putting fortifiers in his bm too to increase his milk so I'm guessing its working. 

My daughter born at 32 weeks was supposed to be 1.9kg but stopped growing for nearly 3 weeks and was only 1.5kg and she dropped from 25 to 9th centile but once i got her home and fed formula as my milk dried up and she wouldn't latch on she steadily increased and by the time she was one years old actual she was over 90 centile and the Dr's were saying are you feeding her too much?? lol! I was constantly boiling lots of veg and mashing it up for her and trying to give her a healthy diet. I think she was just supposed to be a big baby and me and hubby are very tall so that also makes a difference. High or low weight as long as the baby is healthy and doing well that's always the main thing. Are you still bf?

I am scared of complaining only bcuz what if they all get the hump and they don't fully look after my son... after all I'm not constantly there and if something goes wrong I won't be able to forgive myself. I was thinking once he gets better and when the time comes to discharge I will be speak about it to someone as I don't want other parents going through it.


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## nineena

Hiya hun and congrats on birth of your LO, our preemie babies are such fighters and it seems your LO is really coming on in leaps and bounds. Know exactly what u mean about rollercoaster omg somedays when Ella was in hospital were just horrific and infact on Wednesday all i did was cry and cry coz it always seemed like we would take 1`step forward and 4steps back. My LO was born 35wks gestation weighing 1.5kgs, she's 9wks old now and still only weight 2.36kgs. She was born with surgical problems and also PDA but not didnt seem to affect her much and she's only being re-scanned when she's 6months old. Ella initially had lots of problems with De-sats but becoz of the problems with her oesophagus couldnt be put on CPAP so at 1 point was on 40% o2 but as she got older and her lungs got stronger she didnt need oxygen atall from about 3wks old.

Theres also the horrible feeling u get that the staff are watching you and that ur baby isnt really urs. We also found there was a lack of continuity with staff and staff that didnt know Ella wouldnt let us do as much which was incredibly infuriating. You will get through it all even though there'll be lots of tears, both good and bad tears. It sounds silly now but although it was the longest 9wks of my life it also seems like its been and gone really quickly.

Sending oodles of hugs and really hope ur LO continues to make amazing progress xx


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## mumof2kids

Thanks nineena congrats on your daughter,

Yes there are a lot of tears mostly of worry and that empty feeling of being at home a mum of two when you only have one child at home. I think through these 6 weeks the best part was when i got to have a cuddle with him and i brought my daughter along that was amazing for a minute I actually felt that this is how it will be at home with my two children. 

I think 35 weeks was a good gestation and luckily she didn't need much support and none by 3 weeks. With my daughter 32 weeker I was lucky that the rountine appt showed protein in urine and my OBGYN decided to use 2 rounds of steriods on me which did wonders to my daughter who didn't need any assistance in breathing. The nurses at the time kept saying she is lucky she had the steriods... at the time it didn't click but now going through this tough time I totally understand the importance and how helpful it was. I was given steriods this time but only at 24 weeks and they say the effects run out within in a week. Maybe if i had steriods closer to delivery he wouldn't be suffering so much... i know i musn't blame myself but you know how it is... you always have certain things sitting in the back of your mind buggin you!

I totally agree with what you said re nurses, some explain so throughly and get you involved and some look at you as a hinderance. One time a nurse didn't do his cares in the evening including weighing him until we left the NICU... the only reason we liked to be there was so i could give him a small massage and get him to sleep (a little normality in the stress of NICU life) but no she was very awkward. Some give you loads of information on the phone and others say yes what do you wanna know? It's very odd.
6 weeks have gone by and to be honest it's going very quickly and that's only because i have my lil girl with me... to keep me company and have that small normality in life. When she was born she only spent 25 days in hospital but they were the longest 25 days of my life.... all i did was cry and cry to the point I just did not want to leave the hospital and due to that i just stopped going to hospital as it made me so upset to leave her there i think i was depressed at that point and the nurses kept asking my hubby why mummy is not coming to see her lil girl and then just to let her home they made me stay the night with her so they could see how i would cope. But once i got her home it was fantastic noone to ask when and if you can hold your own baby etc. 

I don't know how long my boy will be in hospital but it's only now im getting a lil impatient and when i can't see any good happening i get frustrated but at the same time i know it will all happen with time and when he is ready. For him it's getting of the ventilator.


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## nineena

know what u mean hun about not seeming like ur gettin anywhere. Ella had surgery when she was 3days old as her food pipe was connected to her lungs and windpipe connected to her stomach then after she recovered from that her foodpipe closed but surgeons wouldnt do anything about it and just kept saying she needs to get bigger but wouldnt give us a weight as to what bigger would be. 

I got so frustrated with the nurses in the end that i began challenging almost everything they did. When Ella had her latest bout of surgery on Wed just gone she didnt need ventilating and didnt even need oxygen and just went to HDU but the nurse wouldnt let me cuddle her when she was screaming the place down and wouldnt let me get her dressed saying it was too much after the surgery and yet 3wks previous when she'd had the same thing done she was on oxygen and in intensive care and the staff encouraged me to get her dresed and out for a cuddle. As for ringing the hospital that wasnt really a problem for me coz i was just always at the hospital from 9am til about 8pm every day, think it used to annoy some staff and they used to say to me oh u can go out for a bit or u must be tired just sitting there all day but as the hospital is 26miles away from home and i dont have any other responsibilities at home i was refusing to budge and i still rang before bed to see how she was getting on. If i had children at home already i think id be ringing all the time.

I also agree about normalising things too, just coz ur baby is in hospital doesnt mean u cant make things as normal as possible with the circumstances. Really hope and pray ur LO continues to improve and that things feel like theyre moving forward. I dont think there's anything worse than waiting

hugs xxx


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## Agiboma

mumof2kids said:


> Hi yes you are right I have read that the meds are usually more effective if used within 14 days of birth. But as my baby was IGUR very low weight and did not get enough blood supply to his gut they couldn't risk using indomethacin as it could have compromised his gut at that stage. It's a risk but I can only hope that the PDA closes, I will find out on tuesday even if it closes slightly they will start another dose. But yes surgery is always on the cards... please tell me your experience of the surgery how long it takes when could you see your baby etc.
> 
> Thanks

Surgery was great it went well it takes about one hour and my little guy needed extra o2 for a few hours I would recommend it to anyone


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## mumof2kids

Thank you for letting me know re surgery... had quite a rough two days rather my lil boy has. After having this fifth dose of indomethacin they found blood in his stools and stopped feds and the indomethacin. His tummy was slightly large but still pink. He has had a lot of blood work done and xray's but nothing is convincing enough to say that it is NEC but they still treat it as soft NEC. He was crying and crying for a good 20 to 30 mins yesterday which is so unlike him. Even the nurses were worried. We as parents were just so helpless and feel so low. The surgeons saw him today and feel the we need to manage it via antibiotics for now and not surgery and I'm hoping he does well. He has had no blood in stools today but obviously they will rest the tummy. He has been put back on conventional ventilation as he is not well he keeps getting tired. I just find the whole situation heart breaking and don't know what to think or do. His PDA won't be closed now as they can't give him indomethacin anymore which means once he recovers he will need surgery. Not a good time right now.


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## 25weeker

Sorry to hear your little boy has had a bad few days. I hope the antiobiotics start working soon and he begins to improve. :hugs:


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## Agiboma

wow, i am sorry to hear about this i am also surprised they gave him 5 rounds usually they stop @ 3 rounds if the PDA does not close, i think resting the tummy is great and he is getting his nutrition by tpn i am sure so try not to worry i want you to know that surgery is frightening but i can see the effects of the surgery already. i.e less suctioning my LO was being suctioned every 30 min prior to surgery now its like every 4 hours, gl with the next few days, im sending positive energy to you and your family


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## keldac

I know from experience how dreadful NEC is. I pray your little fighter recovers very soon x


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## nineena

hugs hun and hope your LO is continuing to get better xxxx


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## mumof2kids

Thank you for all your replies. Yes it's been very stressful. Regarding indomethacin they said they wanted to give him 6 doses and then check the PDA however he only got 5 of them. They checked his PDA yda which is now 2mm it was 3mm so the meds have done something but i don't know if its enough. They said they may consider restarting the meds at a later date if the need be it's all on how he reacts and how much his PDA is affecting him. 

His tummy thank God is ok it's a little big but he always had a larger tummy and plus with him being on the ventilator some air goes in the tummy area but its pink and soft so the surgeons are not worried and medically managing it. He has for now not had any more bloody stools. The Dr said yday that it could have been the indomethacin that caused a ulcer in his tummy which caused the bleeding as no markers or xray has shown NEC but it's always better so be safe and treat it. He has been on morphine so he can sleep as he was uncomfortable. He is not on TPN as he doesn't have a long line only the canulas and they preferred to use IV fluids so he has had no milk since monday morning. Now they will reassess the situation today if they want to rest the tummy further and put a long line in or they may restart feds within the next few days. It's all on how he behaves.

I'm happy the indomethacin did something right to his PDA and will only hope the bloody stools were due to the meds. It's so stressful.... many things I can handle but NEC is damn scary as you hear so many stories of how babies don't make it. I'm not too scared with the thought of PDA surgery I was more frightened that he would need surgery for the NEC.

I'm just keeping my fingers crossed and praying this time will pass soon. And he can start making a recovery. 

Thank you again for your kind words.


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## mumof2kids

To Abigoma,

Yes suctioning is an issue with my lil one... every hour to 2hours gets it done now its creamy and white rather than thick yellow which it was before. He is also having physio everyday to push the secretions up so its easier to suction. They have not discussed PDA surgery as yet with me I'm guessing cos he has had infections in the past and now with the tummy and being on antibiotics I can't see that he is ready for surgery right now. But he is still havin desats however he is not going that low as before and it corrects much faster now, before he needed more o2 for improvement but now thats not the case only with cares he needs more o2 but we are back where we started on the vent cos they wanna rest him so he clears what ever infection if he has in his tummy.

They decided to keep him NBM now till Monday so going to start TPN tonight and put a long line in as TPN on the canulas carry their own risk. I'm not too happy with the long line as that's another reason for him to have infection so it's always a double edged sword with everything they do. But the other side says to me I rather him have no milk for another 5 days than restart it too early and have NEC and probs wait weeks or months before he gets any feeds.

So did they try some meds to close your baby's PDA? How's his breathing going now? Is the still on vent or have they moved him on to C-PAP?

My lil one is on CMV right now cos they want him to rest he was on PTV. But last night they increased the rate but decreased his o2 levels and he was quite happy on that mode.


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## Agiboma

mumof2kids said:


> To Abigoma,
> 
> Yes suctioning is an issue with my lil one... every hour to 2hours gets it done now its creamy and white rather than thick yellow which it was before. He is also having physio everyday to push the secretions up so its easier to suction. They have not discussed PDA surgery as yet with me I'm guessing cos he has had infections in the past and now with the tummy and being on antibiotics I can't see that he is ready for surgery right now. But he is still havin desats however he is not going that low as before and it corrects much faster now, before he needed more o2 for improvement but now thats not the case only with cares he needs more o2 but we are back where we started on the vent cos they wanna rest him so he clears what ever infection if he has in his tummy.
> 
> They decided to keep him NBM now till Monday so going to start TPN tonight and put a long line in as TPN on the canulas carry their own risk. I'm not too happy with the long line as that's another reason for him to have infection so it's always a double edged sword with everything they do. But the other side says to me I rather him have no milk for another 5 days than restart it too early and have NEC and probs wait weeks or months before he gets any feeds.
> 
> So did they try some meds to close your baby's PDA? How's his breathing going now? Is the still on vent or have they moved him on to C-PAP?
> 
> My lil one is on CMV right now cos they want him to rest he was on PTV. But last night they increased the rate but decreased his o2 levels and he was quite happy on that mode.

That is great that it's nbm it will help his tummy and the antibiotics is just a precaution so they are being proactive, but the indomiacin can cause NEC that is a side affect and also it is VERY HARD on teh tummy, if 5 rounds did not close it or closed it a little i dont know why they are trying another, its a hard decision to make but my LO was never given meds because his pda was small @ the time of discovery 1.2mm and he was on nbm also so they decided @ that time not to do the meds, fast forward a few weeeks later pda was 3.5mm and surgery was the only option i wanted for my son, I WAS VERY CLEAR WITH THEM i dont want the meds @ this time and they agreed that surgery was the best option.
As of today my LO is on cpac, i am going to the hospital now to see him hopefully get my first cuddle, since he was born i have never held him its been almost 6 weeks. i am always thinking of you and your LO, its hard but try to stay strong :dohh: look @ me giving advice when i go crazy missing my LO everyday and night :rofl:
please keep us updated their is nothing that has not been expereinced by forumn memebers and where all here to help each other :hugs:


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## kayshablake

im going through this now severe iugr baby was born 31weeks 2 days weighing 1lb 10 oz still in hpital now 2 weeks later but doing really well please message me or add me on facebook kayshablake is my name on there would love to keep in touch with going through same stuff xxx


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## kayshablake

https://www.babyandbump.com/premature-babies/362499-please-give-me-hope-advice.html thts the post i made on here hopefully reading through it may give you some sort of insight xxx


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## mumof2kids

Hi, thats great news that your baby boy is on cpap! well done to him! and your first cuddle that is amazing!!! I'm really happy for you. I got my first hold when he was 5 weeks and as he was on the vent and he started gettin desats they have not let me hold him again but let me tell u it was amazing i was in love with him all over again! it's the best feeling ever! Let us know how it went.

Sounds like your lil boy's PDA increased my sons didn't increase it was effecting his heart before but not the lungs now the flow as reversed so it's starting to effect his oxygen around his body. Thus they decided on meds. They said if there is even some decrease in the gap of PDA they can give a total of 12 doses of indomethacin so to close the PDA. He only had 5 and it closed slightly, they said PDA open over 1.5mm is wide so his is 2mm. That's why they may give it again however the Dr also said that if it's not bothering him they may leave it and let it close itself which generally it does. So let's see I'm sure by Monday the Drs will discuss it with me, at the moment they seem to be dealing with his tummy. They started his TPN via canula rather than long line for now which is good. And he has been desatting less today they decreased his rate on vent and is on minimal oxygen so I'm hoping he carry's this on.

I totally understand how you're feeling.... when I leave the hospital I always shed a tear... I just find it so hard leaving him there night after night. I know one day he will come home but at the moment it just feels like we started the journey and end is far far away. I got a little girl at home she does keep me busy and also sane without her I think i would have broken down. Lots of love to u and your family and most of all to your son for dealing with the surgery so well and moving to CPAP. x


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## 25weeker

Glad to hear your lo is improving. My LOs tummy was swollen quite a few times and they stopped feeds, took X-rays and got it checked by the surgeons but thankfully they never found anything just loads of air.

If it can be avoided putting TPN going into a canula then I think it is a better move. When my lo had the infection they couldn't get a long line in and put it through a canula. The next day they managed to get a line in but couldn't move the TPN as they only put fresh TPN into the line and this one had 24 hours left. Her vein went and she had a big TPN burn over her ankle and foot. It was horrendous and she was in such pain. Theyhad tissue viability & plastics look at it because it looked that bad. Amazingly it healed really well and she only has slight scarring on her foot.

They done 12 doses of indomethacin in our unit as well. I think they may come in different strengths. When we moved from Bristol to Edinburgh the sodium in Edinburgh was a lower strength so it looked like she was getting double but she wasn't.

Thinking of you all going through this rollercoaster journey as it wasn't so long ago I was there too so it's still very raw

Xxx


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## 25weeker

Sorry we must have been posting at the same time. Hope my post doesn't cause you more worry. Just make sure a nurse is checking the canula as one of the problems we had was the nurse hadn't checked it often enough so quite a bit had went into her foot!

Agiboma - glad to hear your lo is back off the vent

Xx


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## Agiboma

ty 25weeker, so i GOT MY FIRST CUDDLE 2DAY:cloud9::cloud9: best feeling ever i have no words to describe it, Micah tolerated it so well


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## mumof2kids

Hi 25 weeker, no i know what your saying re the canula it happened to my sons foot where a vein burst it was horrible and black all around he has a horrid scab which still has not fully gone. I went to the hospital last night to see a Dr sitting there so i knew she was putting a long line in and its a so called short long line if that makes sense. It's in ok and getting his TPN via that. I just hope monday he tolerates the feeds and this time next week the line is out. He was having very less desats than before and if he gets little ones its self correcting. The only thing i found was when he gets handled his HR goes down and desats quite badly and then he does this thing called splinting not sure exactly what this is but im assuming its like holding your breath on purpose. But when he gets suctioned then he is absoutely fine. He is needed less o2 then a few days ago and his blood gases have all been very good but they want him still on CMV to rest as he is on antibiotics for NEC. The physio said that his chest is more clear than before so that's good news. I still want to have a cuddle again with him don't know when that's going to be possible but on sunday the nurse was really nice and when she completed his cares she wanted to change his bedding and let me hold him up whilst she did it and that was so amazing and although he doesnt like handling he had no desats whilst i held him up and he kept looking at me... i loved it! So now the plan is to get to monday without any more tummy problems... his tummy still looks big but to be honest he always had a big tummy and like you said 25weeker they air is getting to his tummy via the vent so they not too worried. Hopefully by the weekend they can try and wean him off the vent again! 

Congrats Abigoma on holding Micah... its the best feeling ever!


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## nineena

sending oodles more hugs hun, your LO will get used to his mummy cuddles, theres nothing better :) Really hope things go well and u do get more cuddles soon, its so painful not being able to just pick ur LO up and cuddle them. Sounds like things are still going well though. Your LO is very strong and will keep getting better each day xx


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## mumof2kids

Thank you nineena,

Yes I need all the positive thoughts i can get! He is doing well in every dept but breathing! I don't know how long its gonna be now... 7 weeks old today and not off the ventilator... i wasn't in a rush all this time and kept thinking it will happen soon but now im getting slightly impatient with it all... everytime he makes progress some infection or something hinders it and we are back at square one with the breathing. Yesterday his rate went up and pressures... i was so upset. Most nurses won't let me hold him as he is on the vent so that's another thing. Everything revolves around that one machine! Arggghhh!!! Sorry guys im just venting! Don't know what else to do...

When i go and see him he keeps locking his eyes on me and hubby and putting his arms forward... i can see he wants our touch and it's so hard we can't even pick him up. :(


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## 25weeker

:hugs: it must be so hard not getting to hold him. Hopefully it won't be too much longer.

When I couldn't hold my lo I done a lot of containment holding which I found made her really settled and therefore I felt I was at least doing something. Have they shown you how to do this?


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## nineena

Sending more hugs hun xxxxx


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## Agiboma

yes when i was not holding my LO i did the hand holding where you place your hands firmly (NOt to hard rough though) on their body mostly the head with one hand and abdomen with the other, it was a little comfort


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## mumof2kids

Hi everyone I got a chance to do some kangaroo care with my baby boy on saturday it was so amazing!! I can't explain how nice it was. He was holding on to my top and barely had any desat. He was fast asleep and when he had to go back he started to cry bless him! It was really a wonderful experience. Vent is pretty much the same only he is requiring much less o2 sometimes he is on air. He has not put any weight on as he didn't have any milk. But they restarted the milk yday at 0.5ml and will slowly build it up. I hope it goes well. Few days ago he started to put his fingers to his mouth and tried to lick it... think he was feeling very hungry. Just hoping no more blood in stools and feeds establish. And then work towards weaning off the vent! How is everyone else's baby doing?


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## Anna_due Dec

25weeker said:


> Sorry we must have been posting at the same time. Hope my post doesn't cause you more worry. Just make sure a nurse is checking the canula as one of the problems we had was the nurse hadn't checked it often enough so quite a bit had went into her foot!
> 
> Xx

Yeah i think that's pretty common. Tay has a scar on his ankle where one of his got buggared up. I was horrified when i i found out. He'd been crying for hours and no one knew why, he must have been in so much pain :cry:


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## Agiboma

glad to hear feeds have been restarted and congrats on the kangaroo care it is truly amazing and once your LO gets used to it they will totally always want it, my LO is doing good


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## mumof2kids

Glad to hear things are going well. My baby is stable and slowly getting somewhere on the vent, just hope nothing hinders it again, still having secretions though. I got a chance to do all the cares for him yday as he is much more stable. How's Micah doing on c-pap?


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## Agiboma

cpac well its up and down sometimes he is on room air which is 21% and other times he goes up to 27% so its up down:shrug: i hope he stays on room air soon so we can begin to cycle:thumbup:


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## mumof2kids

Thats good news Agiboma... my lil one needs about 22-30% o2 but other vent issues have not resolved totally. The consultant has started on some meds to clear the lungs in preparation for steriods but to be honest me and hubby have not decided whether we want to use steriods on him yet, it is a big risk and very scary. His PDA seems closing or closed as they checked and could not find any mumur now which is good news. Milk is going ok steadily increasing every day. I'm just not sure re steriods. need some advice before me and hubby can make such a major decision.


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## Agiboma

what steroids are they planning on usuing do you know the name so you can research it on reputable sites?


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## mumof2kids

I don't know the name I'll find out when I go tonight my only concern is that it effects the brain and development of the baby it also slows weight gain too. That is what is making me so confused in what to do.


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## mumof2kids

Got quite an update from the consultants today and I'm feeling very upset not to mention im crying practically every minute. My lil one is still ventilated and although they are trying to wean he is just not making progess. His PDA was checked and is still open same size as they last checked but its not flooding his lungs. We were told by sunday he will start the steriods but his lungs are so bad that it will take him ages to come home and when he does he will definitely be on oxygen. I just feel so heartbroken that he won't be coming in and around his due date which is in 5/6 weeks time. Not to mention on oxygen for a very long time. She started saying they have some babies that are 1 years old still at hospital for the same reason which doesn't give me any confidence. I just want my baby home and it keeps feeling like its a distant memory. Don't know what to do. My family life is suffering I'm finding it so hard to balance between hospital and my daughter who has started school. I don't know how much more I can take. :(


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## Agiboma

Ohhh my I can see you are overwhelmed :hugs: not sure what to say really I hope it gets better soon why are they keeping him so long? Won't the steroids help with ue lung issues? Well hopefully once he leaves the hospital he won't have to go back I really do wish you all the best and positive energy for your family. Is there someone that can help you with your daughter to try to linden up the stress?


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## mumof2kids

They said his lungs are so damaged that it will takes ages for him to recover he has CLD. Also when he will move to cpap the cycling which u were talking about will take ages because they don't want to over stress him so they will go very very slowly. Also when he was inside me the blood flow was not good to his gut so they won't give him 2/3/4 hour feeds and when they will they will be slow cos they don't want him bloated all these things together with his lungs means he won't come home soon. I don't know what to think.

My husband says try and not pay attention to how long as they didn't even give him a chance to survive and here he is. They said he will have problems with his gut and touch wood he has tolerated his feeds. So I'm trying to look at all the positives and thinking we won't know until he moves to C-PAP how he will behave. But as a mum you always still stress and looking forward to his due date and expecting him to come home.

My parents are godsend with regards to my daughter but I just feel I'm not spending enough time with her and feel like I'm neglecting her. She has started school so I have even less time with her.

Steriods may help and may not... no guarantee in anything is there? Today they said his infection levels are up so he is on antibiotics again and they are still going to try and wean down the vent pressures again and if he settles they may try and extubate him but its all on him.

At the moment I just don't know what to think... my family are so supportive but with him in hospital now I'm just feeling very down and depressed.


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## keldac

:hugs: oh i know it's so hard when you can't see an end in sight. i hope he comes home sooner that you expect xxx


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## 25weeker

:hugs: sorry to hear the prognosis from the doctor. Remember they always give worst case scenario. Hopefully your lo will defy them again and goes home sooner than they anticipate.

Your daughter will be loving getting spoilt by granny and grandad. It must be difficult trying to balance both but it won't be forever and then she gets to have fun with you and her little brother.


Thinking of you at this difficult time.


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## pink.crazy

Let me just share a little story with you.. during my LO's time in NICU there was another little boy - he was born at 24 weeks and didn't get steroids.. he was ventilated for a very long time, had surgery for his PDA, laser surgery on his eyes, eventually went onto CPAP and remained on it until 15 weeks old, then went onto low flow. Everything then happened all of a sudden, he had his oxygen off, 2 days of monitoring and then 2 days later he went home. His parents were amazed when it was mentioned!! He went home just 3 weeks after his due date. They were also told he'd be on oxygen - but he went home on nothing!
Babies are amazing.. and seem determined to prove Dr's wrong, as your lil one has already done before!! Stay strong honey, it will be a long road but so worth it xx


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## Agiboma

babies are very difiant and they can surprise you, so even thought the doc's have given you their opinion your LO may just prove them wrong. Stay strong your LO will come home to you i know the NICU experience is hard i am still going through it myself, but just keep in mind that one sweet day your LO will be home where he belongs :hugs:


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## mumof2kids

Thank you so much for all your kind words and positive thoughts, it made me cry that people on this site are so supportive. I will keep these things in mind and every baby is different you never know what will happen next.

My lil boy has yet another infection his CRP levels are up slightly so they had to put back the canula and give him some antibiotics. They also gave him a blood transfusion not because his HB was low but to increase o2 in his body which will give them more of a chance to wean him off the vent. Also he is having physio twice a day to get rid of secretions and is on duirectics to make him dry as they want excess water out so he is losing weight at the moment. I'm just praying all this works and he gets a chance on C-PAP.

Thanks again for all your comments, they are appreciated.


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## nineena

Oh hun ive not been on for a while to catch up am so sorry that your LO is having these problems but as others have said these babies are unbelievably strong and do amaze everyone with what they can achieve. We had to go back in hosp last wk with Ella and were told she'd need tube feeds on a pump over an hr coz she wasnt tolerating feeds and told it'd be a good few weeks before we came home. 2 days after being told this she'd gone back to full oral feeds and came home yesterday as if there's nothing wrong.

I really hope and pray your LO starts getting even more better really soon so you can have him home with you. hugs xxxxx


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## mumof2kids

I'm so glad to hear your back from home with your baby. That must have been a traumatic time to go back. Luckily all is ok.

I know every baby has their own pace but I just feel we are stuck at one position for so long and now with the infection it means he can't have steriods nor PDA surgery if they decide. They have not weaned him off the vent either today so it's basically another day gone. :cry:

His vent is neither getting worse nor better. They could only wean his rate for the past 2 days not the pressure which they need to decrease by 2. ](*,)

On a good note he is showing lots of signs of personally wanting to get off the vent. Moving his head alot, focusing on me and hubby and smiling, his eyes are just gorgeous and tell the whole story. He keeps taking his tongue out wanting to suck. He is on full feeds for now. BP is getting measured manually rather than every 2 hours. He maintains his temp. :thumbup:

Just please pray for my baby that things start to move forward.

Good luck to u all and your babies! x


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## Agiboma

i will pray and send positive energy to your LO and your family, stay strong mamma and know where always here :thumbup:


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## mumof2kids

Todays update is as follows, they planned to extubate my lil boy and see how he goes but before they did anything he self extubated himself and no one was ready they still tried him on C-PAP but he failed with in minutes and is now reintubated. He is back on the convential mode of vent with higher pressures and rate. They also made him Nil by mouth. 

I'm really upset.... I know the Drs did all they can and I'm glad that they tried him on it but I'm not sure whether its because they were not ready and did not prep him is the reason he failed.


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## Agiboma

My little one also did the same he self extabated a few times and they also tried him on cpac at the time his PDA was wide open so he did also fail we had a long history with cpac he was put on cpac 4 times until finally he was off for good so it's hard but I really believe my lo was only able to stay off cpac because of his PDA surgery that really helped him to progress but hang in there it will get better soon


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## Anna_due Dec

oh crap. That sucks. Well he's taken his step backwards so next step has to be forwards :hugs:


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## mumof2kids

Hi all,

I spoke to the consultant on saturday and she said she can't even call it a failed extubation as the tube dislodged and he was gasping for breath few mins before and by the time they got round to C-PAP he was so tired that he couldn't even try so it was plain bad luck. Since then he has been having green bile in aspirate and vomited twice so again they have stoppped feeds since yday evening. And due to that they don't want to wean the vent so back to square 1. I'm getting so frustrated with the whole thing, not for myself but for him. I'm feeling so bad for him, I can't see him anymore with that ventilator tube. Feeling very upset right now.


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## Agiboma

Yes the vent can be very fustrating, my memories of it are still so fresh and very raw. Its indeed traumatizing, you can see your baby crying and you cant hear them, its a very painful sight to watch. But remember this is only for a time, i know that you cant wait to see you LO off the vent for good. But soemtimes it takes time and the steps back and fourth are so fustrating and heart breaking. But he will get off teh vent on day and he will come home with you one day, just keep that in mind, its my only comfort that helped me to get through the days in NICU. 
Sometimes you just need to cry if tats what you feel like doing just let it out. One day the tears will become lesser and lesser and eventually they will stop. Im talking from my own oersonal expereince. Talk to your LO doctors i talk to them all the time, sometimes a few times a day i get clarificationa dn extra clarification on matters that pertain to my son. 
I feel aweful for you and your LO, i will continue to send positive energy to you and your family, lots of :hugs:


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## mumof2kids

Thanks Agiboma for your kinds words. I also read your post that your lil one will be home soon I'm truly so happy for you. I'm glad things are progressing fast and your lil one will be home where he should be.

My son had his eye test and shows that he has ROP now Stage 1 or 2. So they have to keep checking to see if it gets worse. There is not one positive thing I've heard in weeks. His weight has been the same for the last 3 weeks thanks to the suspected NEC, then no feeding, duirectics and now again no milk feeds! Vent is pretty much the same. And now this with his eyes. I know you all say he will come home but trust me it doesn't even feel like it will happen soon, or even his year. Everyone has a threshold and I feel like I have reached mine. All I do is cry and I'm not a crier at all I'm very strong and it takes a lot to break me down but I can't stop myself. Just need some good news and progress which isn't happening.


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## Agiboma

:hugs: ROP is very common in Premies my LO has ROP stage 1 zone 2, its something they may outgrow so try not to worry to much about it. I know things seem so hard now but they will get better. Do you have a social worker @Q your hospital you can talk to. @ my NICU all moms are urged to get a social worker. I am in counselling with a phychiatrist @ my NICU for the stress from my pregnancy and this NICU expereince. try to seek help its ok to do so :hugs:


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## 25weeker

Hi I am really sorry to hear you are getting more negatives than positives I hope things start turning around soon. I know it's difficult but try and take some timeout for yourself, even half hour and read a magazine and have a big bar of chocolate! I ate a lot of chocolate in the 14 weeks my lo was in neonatal.

The big positive is your lo is still fighting and hopefully once the infections have cleared the move to cpap will be successful.

Take care xx


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## mumof2kids

I'm eating alot of chocolate I probably weigh more now than I did in my pregnancy as I was keeping really fit and lots of walking but now he is born I'm just feeling really sluggish and the lack of sleep is affecting me the most only 5 hours at the most. I think it's more certain nurses that bother me like the one yday that was looking after him was the one who does the eye test so she knows more about it, yet I had to ask her on the phone was it done and the answer I got was yes and then a big blank silence so I thought ok then i asked her "how was it?" I got "there were ridges I think its stage one or two I'm not sure". So I asked her a little more and the answer I got was come on Tuesdays and speak to the Dr. I was so worried I called my hubby and we were both stressing as the last four eye checks were clear. So in the evening when we went in we got a chance to speak with the registrar who kindly explained it in 5 mins and told us his left eye has stage 1/2 and his right eye was stage 0. I mean thats all she had to say... I don't know some of these nurses have bad attitudes and as a mother I'm not able to spend enough time with my son as I have my daughter at home so I'm trying to balance it as much as I can and I just need someone to speak nicely and explain to me. It's really annoying and frustrating. I really want to speak out but they are all of one cultural background and I know for a fact if I say anything they will all get annoyed and I don't know how my son will be treated. This is supposed to be one of the best hospitals in the country and the consultants are fantastic and some nurses are beyond helpful but these handful of them are really awful.

Anyways I think I've vented enough... my lil one started milk yday they started slowly due to green aspirates but thank god they have been coming clear for the past 2 days and now is on 4mls per hour working there way back to full feeds in the next 2 days. 

Infection level is low now nearly all clear so antibiotics should stop tommorrow. They checked his PDA with echo yday and its still 2mm neither got bigger or smaller but he is not desaturating all the time unless he wants a nappy change and moves about alot but mostly its self correcting and oxygen is max 30's. So I think the consultant wants to administer steriods but I still feel he should be pushed one more time to lower his vent setting and have atleast a proper try to be extubated. If it fails then I would agree to steriods as it's not fair on him having this tube stuck in his mouth and he is at a age when he wants to turn his head move about suck etc. 

So please tell me about your lil ones and the experiences your going through?

Also anyone out there with a preterm baby with CLD how was the experience on the vent, how did they get off, did they come home with oxygen etc etc. How did they over come it?


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## mumof2kids

Just a small update, since milk has begun he is growing very well. Still desaturations happening but not as much and self correcting with low oxygen. PDA still open however it is not effecting the lungs as much. Consultant has started steriods dexamethasone. I hope it helps his lungs. Otherwise his brain scans and other functions are going well. It was a hard decision to put him on steriods but we have no choice with his severe CLD.


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## Agiboma

glad to hear things are going well


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## keldac

Both my daughters came off the vent within a week by themselves. However my very good friend (since we met in SCBU 8 years ago) had a 23 weeker who just couldn't. At 8 weeks they gave her steriods and she was off the vent very quickly. Heather is now a perfectly healthy 8 year old with no lasting probelems :hugs:


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## mumof2kids

I rang up today and the hospital said over night he was practically on air throughout the night and pressures have dropped, rate has been dropped and if all goes well they should extubate tonight or the latest tommorrow! I'm really excited and amazed as I was told it can take 3 days atleast to show results and its been 24 hours. Please pray that this is his time to get rid of the vent for good!! :)


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## 25weeker

I will keep my fingers crossed x


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## keldac

wow that's great! I hope all goes well xxx


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## Agiboma

:thumbup: praying and sending you positive energy mamma


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## mumof2kids

Thanks to u all.

My lil boy was extubated yday 24 hours since steriods and for now is on biphasal and apnea mode. Can't believe it, i don't think it have sunk in as yet. They said he is on the highest phase on si-pap on air most of the time. He is having recession and putting alot of effort with his breathing so they only giving half feeds to avoid bloating. I can kind of hear his voice but its still not normal as I've been told it will take a long time as he was ventilated for so long. He was crying alot so they have given him a dummy and he is properly sucking on it. I feel terrible that i can't feed him on the breast or bottle and hoping he is not on c-pap for long for me to establish feeds but I guess it's all on his lungs. Please send positive thoughts that he carries on fighting.


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## Agiboma

postive thought for your brave little fighter, keep strong mamma :thumbup:


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## mumof2kids

My boy is still on the si-pap :) having only mild recessions milk has increased rest is TPN hopefully 2mrw back on full feeds. Me and my hubby got our first cuddle without the vent today :cloud9: It was the most amazing feeling ever I'm feeling so happy!!! :happydance:

I can't believe my baby is using a dummy without it he keeps crying! Now next stage is to cycle and remove si-pap so I can start to feed him as he is 36weeks gestation and he is sucking very well.

Happy days finally!


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## keldac

I'm so pleased things are finally looking up x


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## Agiboma

:happydance: YEAAAAA way to go LO,:baby: give him an extra kiss for me mamma for all his good work:winkwink:


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## Anna_due Dec

Yay...excellent news. What a rollercoaster. Hopefully the worst is behind you and you'll be bringing him home before you know it.


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## mumof2kids

My lil boy is very stable on the si-pap the nurses said his blood gases are very good. I'm so proud of him, he is still on air which is great news for him and his eyes. They did another eye test yday which my hubby was present for and luckily I was not as I don't think I would have coped. His right eye is perfect stage 0 but his left eye on one side is stage 1, so it's sorta regressed as I'm just hoping it doesn't get any worse. His milk has increased again and will be nearly full feeds very soon as they can't keep giving TPN via the canula. We another hold at night but he was crying alot I think it was his eyes it must have been sore from the eye test as I was cleaning it with sterile water and a gauze. But I rang them up in the morning and through out the night he kept on sleeping no crying :) 

They have already reduced the amount of steriods they were administering to him by half.

Thank you all for your support girls its so nice to speak to people going through same or similar experiences.


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## 25weeker

Glad to hear your lo is doing well. I always went out when the eye exams where done as they told me I wouldn't want to see it. Xx


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## Agiboma

yes the eye exam are very stressful, and its pretty tough to watch, i am glad that your LO is doing great :thumbup:


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## mumof2kids

Hi everyone, had a few good days. My lil boy has been moved from NICU to NICU2 which is like HDU :happydance:

We were told that he was the most stable baby in NICU so was transfered. I'm so proud of my lil boy. Now he needs to gain weight and get stronger. I can hear his voice now which is lovely :cloud9:

When his cares are done they take of the mask and give him 5 to 10mins without and he is absoultely fine. So the nurses will talk to the Drs whether he is ready for normal C-PAP and then fingers crossed cycling.

I just hope we won't spend another 11 weeks in NICU2 and come home sooner rather than later!


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## Agiboma

Yeahhhh so happy for you what's you LO name if you dont mind me asking so we can refer to him by name on the post so happy mamma happy days are HERE


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## mumof2kids

My lil boy's name is Aaryan which means noble one in sanskrit. He has been on NCPAP since yday and is doing well on it. Hope he holds on then maybe next week he can start cycling. 

How do they decide how much oxygen he needs when they start cycling?

Aaryan also had this first bath :happydance: he slept like a log after that :sleep:.

Only thing is that he is not gaining weight on bm and fortifiers so I got a feeling they will use part formula. At first I was upset by it but I just want my baby home so right now I'll do anything. I was told he can start wearing some clothes so looking forward to that. Now I need to find some preemie clothes.

The Drs are still saying there is a long way to go but I think he has overcome such a big hurdle in the last week,getting off the vent, moving on the normal cpap been on air for over a week. I'm just counting the months off and hoping he will be home soon. My daughter was born on xmas day so she really wants him home before December. Can't wait!


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## 25weeker

I don't think they have a exact science to the amount of oxygen (I could be wrong but it felt like that on my unit) when they are cycling it is just trying it and increasing / decreasing until they get it right. They probably have a good idea where to start through experience.

In the second neonatal unit I was in they didn't use fortifier so Holly was given 50%bm and 50% pre aptimal. Tbh as long as it put weight on her I would have tried anything!

Aaryan is a lovely name. Glad he is doing well and likes his baths xx


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## mumof2kids

Thanks 25weeker. Just came back from the hospital. Aaryan's dexamethasone has stopped today so now its time to watch how he behaves off it. Fingers crossed he does not go back to ventilator. So this week is critical. His eyes thank god are the same as before left stage 0/ zone 2 right stage 1/ zone 2, so it has not got worse now it will be checked 2 weekly. Otherwise doing fine 99% of time on air when he cries it goes up to 22%. Going back in the evening once my daughter sleeps. Hope he carries on his good work.

So regarding the cycling do they check the o2 saturations and adjust the o2 requirement? His pressure is still high between 6 to 8 and the said they need to lower that first before the would cycle but if the he can hold on for another 3 or 4 days then they will lower his pressure and may start cycling next week. I hope this happens as he does not really like the c-pap mask. :)


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## 25weeker

When they initially started weaning Holly she didn't require oxygen but as she started coming off it for longer she required it. She was still in an incubator at the time so they put it in the incubator. They basically monitored her sats and adjusted it as necessary. When she moved into a heated cot she got the nasal canula for oxygen.

Once they started weaning her off cpap Holly became more aware of it and she started getting really agitated and pulling it so they decided to take it off her for good.

From memory I think hollys pressures where around 4 when they started weaning.

Fingers crossed he remains the same with the meds stopped. We were warned that hollys requirements may go up when they stopped diuretics but they never did


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## Agiboma

In Canada to begin to cycle the baby needs to be on room air or close to it at that pointtjey will cycle with low flow cannula if the baby need more they may give high flow canulla


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## mumof2kids

Thanks girls... sometimes I feel we should get some medical certificate after going through NICU :winkwink: I have been mistaken for some medical student already, a staff member but the funniest one was when a parent approached me thinking I was a consultant :rofl:

Aaryan's bed was moved again to another site in NICU2 where the monitors are very sensitive that sats dip even if u move for a second so I'm none to pleased that they did that. As I want an accurate picture of his behaviour especially now dexamethsone has stopped. I did mention it to them but they don't want to move him back to the same site even though its empty. :shrug:

When I left from hospital last night I think his pressures were 7 so I'm assuming they need to lower that first before cycling. He is still on air and if he has a cry it goes up to 23% but right back down again when he stops. He is having alot of tantrums already he won't take his dummy very well and wants to suck on my finger I think he really wants to bf but I can't with cpap :nope: so I can't wait for him to get off it. 

He is not gaining much weight so I'm going to push that they introduce some formula to his milk. Since he is on c-pap he is using alot of energy in his breathing and like my daughter he is not gaining weight on my milk.


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## Agiboma

I would try to avoid formulla I am so obsessed with breastmilk:blush: but on a serious note you can ask them to put fortifiers in your breastmilk that will help him to gain faster my LO was on the max of fortifiers and he had mtf oil also adden to my breast milk and that was working great until he started to take the breast alone which is where we are at right now


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## mumof2kids

Yes I personally want to bf as i couldn't with my daughter. And this is definitely my last baby so i want to give it a go. I spoke with the nurse and she is not to give formula and the Dr wants to give him a chance they think the steriods were not letting him grow which he is been off for the past 2 days and he has gained 100 grams. The bm he is getting is already fortified. Fingers crossed that he gains it faster now. I'm getting a lot of support from my mum looking after my daughter so I can spend more time now with Aaryan so I go there after w/r at 11.30am and stay till about 11pm. 

Had quite a bad night as one twin who was next to Aaryan in NICU died, her twin sister just got home last week. It was devasting and sent shivers down my spine.


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## 25weeker

Although they gave my daughter 50% formula instead of fortifier she came home exclusively breastfed and has been for over 5 months.

The fortifier worked for her as well in the first unit I was in. She only went to formula in the second one because they didn't use fortifier and it was a formula for preemies. TBH I would have given anything for her to gain weight as with more weight lungs get bigger and she got stronger.

Fingers crossed the fortifier works and your lo gets nice and chubby.

Xx


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## mumof2kids

The main reason why they don't want to give formula is the risk of NEC as he was so premature. He had low sodium and is on a few duirectics too which help him in some ways with re to lungs but makes him dry out too thus weight is not going fantastically. 

Today Aaryan had low HB so had a few desats and needed 28% o2. He was given a blood transfusion and went to about 24%. He was off cpap for 20mins in the afternoon and needed some help with o2 but in the evening when doing his cares he was off for a whole hour no o2 no c-pap in my arms and he was happy, smiling, opening his eyes and his blood gas was better than when he was on c-pap. I was so happy and proud of him. The nurse said she will tell the morning staff if he can cycle tomorrow atleast one hour twice in the day. Lets see how it goes. Another nurse felt he may be able to come on end of november which is probaby my limit to sanity. Anything more than that I think I will lose it.


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## AP

Thats great hun, its amazing how much they perk up after a blood transfusion!


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## 25weeker

That's great the transfusion has helped him.

My lo was on diuretics and was on quite high volumes of sodium and potassium. Its because it makes them pee loads as it removes any excess fluid from the body and lungs making it easier for them to breathe. Once she came of them her sodium & potassium sorted itself out.

I hope the cycling goes well xx


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## keldac

My first daughter had fortifier mixed with BM and Formula - she then developed NEC and tragically never survived. Having a small baby is better than having no baby. I wouldn't give just anything to make them grow - you have no idea what is going on inside.
When I had Mikayla (also born prem) I refused fortifier and formula altogether. She didn't grow and they kept trying to persuade me - but I stuck to my guns. She is still tiny now at 20 months and only ever put a few ounces a week on - but she is fit and healthy.
I hope you lo makes huge improvments and is home soon :hugs:


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## mumof2kids

Not really a good day, first I think we had the nurse from hell who has never looked after him and she was refusing mostly everything I say. She was obsessed in turning the o2 up and down up and down I don't know how many times she was fiddling with it must have been over a 100 times. He moves and the new machines they have now are apparently very sensitive so if he desats to 80 she would run from where ever she was and turn it up. Even when I was holding him she kept coming over me to touch it. I insisted that she gives him an hour off cpap and she finally did, he was very sleeping so his sats were around 80 and she straight away said thats not good, he can't do it I'm going to do a blood gas in one hour and I know it's going to be bad. I thought hey whats with the negativity. As he was sleeping I had this o2 pipe next to him which I wafted near his nose if he dipped under 85 I think it was 0.5ltr and he lasted the whole hour no bradys and apnea. And low and behold she came back saying gas was ok.. actually his PH was better than the last one. Seriously she stressed me right out. And I think Aaryan felt it. in the morning I was cleaning his mouth as he had alot of secretions. She saw what I was doing but as his head was turned she turned to the student nurse and said look he must be vomiting we have to stop his feeds I couldn't believe it, I was only cleaning his lips! I couldn't believe it!

I also wanted to say I totally understand what u said re formula, I'm very sorry to hear what happened. I really want to give my baby bm and also bf when the time comes. I just hope he gains some weight and grows stronger. Drs at the moment are not keen on giving formula they want to give him time so lets see. 

With all this stress he was crying practically all day... I was so scared to leave his bedside with the nurse from hell. I didn't eat anything for over 10 hours with worry. I only left him for 10mins when the nurse swapped to night staff. I spoke to nurse incharge and she tried to explain that if he dips under 70 then touch the cpap but she was obsessed. Then they wanted to check his blood as he has an infection and the blood clotted so they wanted to repeat but this time from the vein and omg did he cry when it happened. he cried for more than one hour straight there was nothing I could do to stop him I had tears in my eyes I felt so guilty that I brought him in this world and he is going through so much pain. His o2 requirement when right up to 33% and until my hubby came and held him everything calmed down and he didn't desat and was relaxed and o2 went down to 23%. What a day I'm still feeling on edge and very stressed


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## mumof2kids

I just want to say thanks to everyone's messages... it really helps talking about experiences at NICU


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## 25weeker

:hugs: :hugs:

It is so frustrating when you have a new nurse. Up until my lo came off oxygen her sats swung all over the place but she always self corrected. The nurses who knew her would leave her oxygen at the same setting but when she had a new one they were constantly turning the oxygen up and down. I really wanted to stand in front of the machine and say 'leave the oxygen alone'. Eventually I did start saying something as she is my daughter and realised mum knows best.

I hope tomorrow is a better day for you and aaryan and he has put on good weight.

Xx


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## 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


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## 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.


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## 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.


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## 25weeker

:hugs: 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


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## 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.


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## 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


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## Agiboma

:hugs: 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 :hugs: for you mamma, just hang in their a little longer.


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## 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.


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## 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


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## 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 :(


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## 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


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## 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. :(


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## 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


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## 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.


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## 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 :thumbup:


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## 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!


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## Agiboma

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


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## 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


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## 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.


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## 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!


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## Agiboma

hi mamma
yes i know its tough now and i know not seeing him ofr 8 days must be driving you :wacko: 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 :thumbup:


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## 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


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## 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.


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## Agiboma

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


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## 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?


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## 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


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## 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


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## 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?! :(


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## 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


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## takingforever

mumof2kids said:


> 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


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## 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.


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## 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


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## 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


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## Agiboma

glad you are feeling better and AAryon is doing great


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## 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


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## 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 :(


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## 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.


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## 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?


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## 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


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## 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.


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## takingforever

Just a lil update :(
Well L'Angley has been put back into intensive care :( Hes working too hard with his breathing around 120bpm 85%02 he was an inch away from being reintubated poor lil thing but they have had a word with a respiritory specialist off the childrens ward and have decided to start him back on dex for just a little over a month starting off at 0.4ml then going down to 0.2ml then 0.1ml every other day to see if that improves things they have stopped feeds yet again as he needs to have a camera down his throat to make sure his milk is going where it should be and not into his lungs as he cant tolerate 2hr feeds and they recon at 33 weeks gestation he should be on 2-3 hourly :S
They did an ecg and a echo and his heart is fine and pumping enough blood to his lungs but his crp is slightly raised to 11 but he has this pea sized lump on his arm where he had a canula or an attempted canula its all red and looks really sore so they think crp might be raised cause of that but hes on antibiotics anyway so they arnt really concerned.
Just rang to check on him and 02 has come down to 60%ish and is more settled but still unstable and they promised to ring if anything changes god im never going to sleep tonight now :( xx
So glad Aaryan is doing so good he will be home before you know it even if it is on 02 fingers crossed he keeps up his good work xx


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## 25weeker

I am really pleased to hear Aaryan is doing well cycling of the cpap and is only needing tiny amounts of oxygen. You could try fenugreek to increase your supply. You can get it in holland and Barrett. You could also increase the number of times you express for 2 days. When I needed to increase my supply I expressed 10 times but still only once through the night. To fit them all in I expressed 4 times over 4 hours! Although I didn't have any other children so could spend my time doing it and this probably isn't as easy for you.

Takingforever - I hope your lo stabilises and doesn't have any infection. Take care xx


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## Agiboma

Takingforever I hope your LO gets better soon he will be ok just hang in their mamma


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## mumof2kids

Taking forever, I'm sorry to hear that L'Angley is back in NICU, he may just need more dexamethasone, I'm glad to hear he is not reintubated. It is really hard watching your baby go from cpap to vent I was so unhappy when it happened with Aaryan. Also I want to say your baby is 33weeks so he has alot of growing still to do... it maybe just his age and with time he will improve. Aaryan was on hourly feeds till 40 weeks only then he moved to 2 hours. Also inflammation can cause the CRP to increase I hope there is no infection. I hope to hear some good news from u today just keep positive, premature babies are defo fighters sending lots of :hugs:

25 weeker, I will definitely try more expressing, my mum has taken my daughter on holiday for half term holiday so I have more time on my hands to be with Aaryan and increase my supply. Fenugreek sounds like a good idea. Thanks :thumbup:

Aaryan is doing ok yday had 4 hours off which he tolerated. He so needs a hair cut as his hair keeps pulling on the cpap hat and he :cry:. The consultants want to move him to my local hospital apparently he doesn't need intensive care now. But I'm not too happy with it as my local hospital is actually further than this one. Also I want him off cpap before he transfers as they said he can be in special care at my local but they don't take babies on cpap in special care :wacko: it doesn't make sense.


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## takingforever

Well i agree with you there mumof2kids our preemies are defo fighters i walked into nicu this morning and it was like looking at a different baby he looked so much better and is no longer on bipap he is just on normal cpap oxygen down to 34% feeds have been restarted diaretics have kicked in he no longer looks puffy he was weighed and has lost 1oz i was amazed at the difference im just looking forward to tomorrow now as i can have cuddles now he has stabilized woo hoo :) 
I feel like im on a rollercoaster my emotions are all over the place but for now im a happy bunny :)
OMG the cpap hats are rediculas way too tight my lo has quite a bit of hair too and it snags at his and his is pink lol only one that will fit him xxx


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## mumof2kids

I'm so happy for u!!! Welldone L'Angley!!! He has done brilliantly. He just needed that one day to recover and here he is, you must be so pleased. Sending positive energy that you can have cuddles soon. 

Aaryan ok but not so settled crying alot again which I'm concerned about and his o2 requirements have gone up to 27% Doctors gonna give him a try with more time off so lets see. He has 0.03 o2 on nasal canula. I'm going twice a day to be with him when he on nasal canula... they found MRSA in his sputum so I'm very very worried, they said its nothing serious as at the moment its not in the blood but still as a parent it's scary. I don't want anymore reason for him to go backwards.


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## takingforever

Bloody hell there is MRSA going round our nicu too pisses me off that they swab for it when they think your either not looking or when they think your not about we caught the nurse doing it last time and asked her why she said a baby in the nicu had it (not in so many words as she can get into trouble) I asked her if the baby had been moved and it hadn't as there wasnt enough staff to take the baby to isolation i was so mad but touch wood L'Angley has had 3 clear swabs which means hes not caught it *thanks god*
So are they going to treat it mumof2kids or leave it till it gets to the blood ?


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## mumof2kids

In this hospital theY swab all babies twice a week its normal practice for them to do that as they like to know what bugs the babies are carrying and íf the babies suddenly get unwell they are ready with anti-biotics. He has had it in one swab and they will repeat it again today. They also barrier nurse him so gloves and apron so the next baby won't get it. His one is via contact, thus someone has passed it on to him, apparently a third of us carry the MRSA on our skin, so its skin to skin contact. She said if its in the blood then its serious. If this swab shows up again then they will use a scrub on him and put some meds up his nose that's really it. 

Aaryan is behaving fine though thank god! Still cycling, nurses said it will take many weeks to totally get him off cpap but fingers crossed it will happen. Doctors are not too concerned so just going with the flow. 

How is your lil one doing?


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## takingforever

L'Angley is doing good now the steroids have kicked in oxygen is around 30% they are going to try 2 hour feeds today and slowly wean his preassure down ready for cycling but i feel its too soon but we shall see what happens as of today his steroids have gone to once a day for the next 4 days then every other day till 27th Nov. His antibiotics have been stopped as all his cultures have come back clear his crp is dropping and all the secretions are clear also should get a date today for his xrays to see where his milk is going hopefully it all stays in his belly and its just wind that makes him dip so fingers crossed.
Im so glad Aaryan is doing good and fingers crossed this MRSA will just dissapear and at this rate you will have him for xmas yay go Aaryan !!! xxxx


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## mumof2kids

Hi it's been a long time and I'm a very upset mummy, my lil one was doing well with cycling and increasing his feeds to 3 hourly on monday he was supposed to have 8 hours off and 4 on, and he got transferred to level 2 hospital my supposed "local hospital" its absolutely horrible I hate it, they are keeping us in this one room like a isolation room which because of his infection he is something called CMV which he had for weeks and weeks in the old hospital but there was no need for treatment as he was not showing any clinical signs all that happened that he was barrier nursed, with regards to MRSA he has already 2 clear swabs so they think it's cross contamination. Anyways this place is so relaxed and they don't have enough staff, they stopped our cycling as he has desats which he had at our London hospital, I'm just fed up with it all he is back on constant cpap. All I do is cry when I'm there and when I'm home. I can't believe I didn't get a chance to keep him at Royal London I'm so unhappy and there is nothing I can do. Just to add to the stress I was told he has hernia's and we need to operate when he gets a lil older. I don't know what to do just feel so alone and he feels so out of his comfort zone needing more o2 now! :(


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## Anna_due Dec

It's just set back after set back with your little man. I really feel for you. Just try to focus on the positives, I know it's hard. Don't forget this does have an ending and it is a happy one. hope he starts taking some big steps forward soon xoxo


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## Agiboma

sorry to hear about your fustration. i know that the "LOCAL hospitals" are often way more relaxed than the intensive care but dont worry about it he will be home with you where he belongs soon enough, hang in there mamma


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## takingforever

Aww hun im so sorry sounds like your going through the same as me we found out 2 days ago that L'Angley has a hernia due to straining for a pooh but for the past week ive asked the nurses to give him some glcyerine (sp?) to help him but no they wait till he popped a henia in his scrotum which will need surgey before he can come home which is weeks off yet but the thought of surgery petrifies me :( So now he will get regular help.
His oxygen has started creeping back up to anywhere between 40-50 % but they dont seem too concerned about that even though hes still on the steroids..Yesterday he had an upper body GI study to see if his milk was going into his lungs but its not but it did uncover another problem he has his stomach isnt contracting properly and i havent a clue what that means have to wait till today to see if the report has come back and go from there.
It always seems to be one thing after another Big hugs to you and keep your chin up :) xxx


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## mumof2kids

I don't know what to say anymore I'm just exhausted with the whole thing. I just want my baby home and it's not happening. They atleast started cycling 3 hours off, was 8 hours on monday at my other hospital. Feeds are going ok. Gaining weight, they keep telling me he is a stable baby, my only worry is increased o2 when I went in today he was off c-pap and was on 1.13o2 I was horrified he has never needed such amounts before ever, I just quickly picked him and gave him his dummy and the nurse decided to bring it down to 0.05. The consultant seems very good having worked himself at the Royal London but the nurses and staffing issues are just terrible. I don't know how long this is going to go on for. They keep repeating to me that they are a very poor trust and even told me to go back to Royal London and ask them for certain things they run out of. I just find the whole thing ridiculous. They don't promote full breastfeeding, they want to feed by baby bottle, they don't have 24hours visiting for parents. Sorry for ranting but I just can't help it, one of the parents told me her daughter was fed someone else's bm!!!

Agiboma- I'm so happy to hear your news, how is lil Micha doing at home? What's his weight?

Takingforever- I know what u mean with o2 requirements our CLD babies are so dependant on o2, don't know when it will end. Hernia is just terrible, they told me I need to go back to the same hospital Aaryan was at to do the op I don't get why he was transferred then! I'm sorry to hear about his tummy, you are so right it's one thing after another. Fed up!!!!


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## Agiboma

Micah is now a little over 7 pounds, and on strict bm no more fortifiers YEAHHHH.
@momof2kids i know not having 24h access to your baby must drive you crazy @ the local hospital we where @ they closed the doors for shift change which is 1 hour and that drove me crazy. Aaryon is a fighter and he will be home soon with the family
@taking forever so sorry about the hernia i herd they are very common


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## Anna_due Dec

Not having 24 access in a nicu/ scbu is disgusting. Hopefully your time there passes super fast.


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## mumof2kids

Its even worse that they don't have different rooms for NICU/HDU/SCBU its all one long room so they start 9am and finish 12pm thats how long ward round is. 

They pushing me to use bottle on him not to breastfeed, today they gave him a bottle he drank quite a bit. He is cycling again and they did a heart scan echo, and i was so happy to know his PDA has closed and heart is fine so thats one less surgery.

Still on o2 so I guess more than likely he will go home on it but anything is better than going there.


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## Agiboma

:happydance: glad to hear things are better now, one day he wont need the o2 anymore premies are like that, i cant wait for him to go home where he belongs:hugs:


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## mumof2kids

Thanks Agiboma, I do hope he can get off the o2 one day with his CLD is more likely to be on it, he still has desats. They tried feeding him a bit more bottle today but his heart rate went down so I guess he is not ready for that yet. Cycling still happening. Did his eye test which is clear no ROP so yes no more eye tests!!! 

How much o2 did yr lil Micha start on and how long did it take to wean?


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## Anna_due Dec

yay!! no more eye tests!! One less thing for the little man to worry about.


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## Agiboma

Yeahhhh about the eyetest Micah on the crbt was always on the 20"s even when his PDA was at it's worst cpac he was in the 20"s also and spent 2 weeks on cpac and snothe 1.5 weeks on low flow I went to the nicu today to pick up breast milk and saw a mom he baby had cld and hot the steroids to get off the jet ventilator he has been on cpac for s few days now he is in 40 percent at the highest doc said he willmost likely go home air so every baby is different but for Aaryon to be cycling it is great news and he will be onloe flow in no time


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## 25weeker

Glad to hear Aaryan's eyes are all ok. It's such a horrible test for them to have!

I don't think I have seen many on bnb with babies who went home on oxygen but if you go to the bliss forums there have been plenty on it. They will be able to reassure you on how to cope with it and tell you how long they were on it etc. All of them say it soon becomes second nature and some of them even felt more reassured having their lo on oxygen. 

I hope the cycling goes well. He will get the hang if feeding but it takes them a while to remember to breathe as well as sucking & swallowing.

Keep up the good work little man

Xx


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## mumof2kids

Thanks guys, I was told on cpap he is not requiring much o2 between 22-23%. On nasal its a bit more 0.05 so I'm assuming once he gets used to it he can start slowly wean. I don't want to come home on o2 obviously but then again if he is ready then I wanna get out of hospital. 

Feeds a couple of days ago went well yday he looked extremely tired so maybe he just had one of those days. Though I'm not in a rush to feed him, I just want him on low flow first. Still I'm hoping early december 4 weeks from now I can go home lets see, it might stretch a bit more I know but its nice to work towards something. 

I will check bliss website. x


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## Agiboma

I hope all is well have not herd from you guys in a while


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## Anna_due Dec

I was wondering about you guys too. Hope you and the little man are well xx


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## mumof2kids

It's been a tough few weeks to adjust at the new hospital, not sure that we have fully adjusted. Aaryan has been off cpap for the past 4 days, on low flow his o2 has crept up so thats not been fantastic. He has been moved in to a cot. He is bottle feeding a bit. Main thing now is to lower his o2 slowly be on full feeds on bottle then home. Everyone there says he should be home before xmas but noone is sure whether he will be off o2 or not by then. I don't know part of me is happy the other part is scared. Just getting very very fed up of going hospital just want him home now.


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## 25weeker

Yeah glad to hear Aaryan is off cpap and in a cot. When they first started weaning Holly of cpap she didn't need oxygen but as the spells got longer she started requiring it. I am guessing they are a little bit more tired fully breathing on her own.

Keep up the good work little man. I hope you get him home soon xx


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## Agiboma

YEAHHH Aaryon so glad he is on low flow it is deffinatly a BIG STEP in the going home direction, he is almost home mamma were in the home sretch now so just hang in their it will All be worth it once your entier family is home celebrating the holidays


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## mumof2kids

Thank you guys, his o2 is keep going up and i think he is finding it very tiring with sucking and breathing aswell. I'm 99% sure he will come home on o2, but I'm also sure being at home he will grow faster and he will come off o2 faster. Although we are looking at another 2 to 4 weeks I'm sure he won't come off full oxygen. But given the choice I want him home.


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## Agiboma

Well I hope he comes home asap


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## mumof2kids

Thank you.... its still very much the same with my lil one. Still high o2 0.08-0.09 they think he has a cold which is making him like this. I have also caught the cold and have not been going again to hospital, my hubby is doing the rounds there and we are also moving home so lots happening. Doctors are putting his name down to hernia surgery they want him to be 3 kg and hoping that he is off low flow before they do it but it can suddenly become an emergency op. All I keep wishing is that he comes off low flow so I can take him home, he is doing well with the feeds. Please send positive energy that my Aaryan can come off o2 soon and me home with me, missing him like crazy! :(


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## 25weeker

Sending loads & loads of positive energy to aaryan.

0.08 & 0.09 are still relatively low so try not to worry. The hospital I was at with Holly had the minimum level of going home oxygen as 0.1.

Hope you feel better soon xx


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## Agiboma

Sending you so much positive energy and :hugs:


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## mumof2kids

Thank you!! Its moving house today, so a busy day ahead. Going to get his nursery ready finally for his arrival, still hoping thats in december! Hows micah doing?


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## Agiboma

Micah is doing very well he is adjusting very nicely, we are also preparing for christmas, good luck with the moving houses and its only a short time till Aaryon comes home


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## mumof2kids

Hi everyone, hope things are going well. My update is Aaryan still on low flow, on full bottles, ng tube out. o2 gone up between 0.08 to 0.12. Doctors said they are happy to send him home on tuesday on home oxygen!!! :) Pls pray and send positive energy that nothing goes wrong now. He still needs a hernia operation but that will happen later this month or the next.


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## 25weeker

:happydance: Brilliant news. Enjoy having your boy home 

Xx


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## Agiboma

:thumbup: Yeahhhh that's greAt enjoy him at home


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## mumof2kids

Thank you girls!!!! I can't wait!!!!!!


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## Agiboma

We cant we either :hugs:


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## mumof2kids

Its going to be bitter sweet knowing that he has to go back to hospital again for surgery on his hernia. It's hard to enjoy it fully. Plus coming on home o2 isn't fantastic but they said they wouldn't wean him until spring so we looking a good few months on it. But I'm trying to stay positive that I can overcome the home o2 and enjoy my time with my baby.


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## Agiboma

On the up side he may come off befor spring one thing I know these premies right their own story


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## mumof2kids

Thats what i said but they said its madness weaning him in the coldest winter we have... they said it will take a long time to wean as he is at home and if he were at hospital it would be much faster. On the upside is that he is going to be with his family and get so much love and attention not to mention being spoilt rotten! It will help is development... I guess its something which I have to get used to and atleast I'm not being told its for years. Only a few days left... I get to anxious that what if something goes wrong and they tell me its impossible for them so send him. Today I went hospital and found he didn't have is nasal canula's in his nostrils I was so scared as I thought something must have happened to him so I put the light on just to see him moving about and really nice pink, I tell u my heart was in my mouth.


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## Agiboma

its a natural feeling us PREMIE moms know all to well, dont worry he will be home so try to get things ready for him


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## Anna_due Dec

Yay!! so happy for you to be getting him home after so long.


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## mumof2kids

my Aaryan is home!!!!!!!!!!!!!!!!!!!!


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## Anna_due Dec

Congratulations!! I'm so happy to hear he's home with you. You've had such a bumpy journey. What a tough little boy. Well i hope you have a FANTASTIC Christmas xoxo


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## 25weeker

Congratulations. Enjoy the sleepless nights.

Hope you and your family have an amazing Christmas xx


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## mumof2kids

Thank you so much! Hope u guys have a fab xmas with your lil ones!! Aaryan is doing well, only real issue he is having is trouble with wind think he has colic. Otherwise yes sleepless nights have begun ha ha! We booked his hernia operation for end of jan. Finally home I still can't believe it.


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## Agiboma

Yeahhhhhh so happy for you:happydance:


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## mumof2kids

Thanks its tough I got to say, most problem at the moment is feeding, he has so much wind that he is crying so much and the wind is not letting him finish his feeds, dont know what to do.


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## Agiboma

yes my little Michael also has a lot of gas, i try to do some bicycle excercises with him and that helps some times, i lay him down and pull his legs towards his chest and he lets it out, the doc says that they usually are gassy and they dont get over it until they are 3 months corrected


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## mumof2kids

Thanks Agiboma, I'm trying to massage him and move his legs about sometimes it works, he is not 3 months corrected yet so I guess we have to wait. Enjoying him at home although he has a cold which was passed down by my daughter so is not well at all, hoping everyone is well for xmas! Hows your lil one doing?


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## Agiboma

we are well looking fwd to the holidays:thumbup:


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## mumof2kids

Thats great news! We are still on home o2 going to have many sleep studies to check how he is doing. Does anyone know how much weight should babies with CLD on average put on per week?


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## 25weeker

I dont know what the average is but my lo is slow at gaining weight. She would only gain around 4oz a week when she was younger. At 8 months corrected she is only gaining about 2.


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## twins6410

my little boy was 26+1 and he was vented for a long time, i cnat remember how long tho, he also had a collapsed lung and a PDA, he has 3 courses of aintibotics and non of them worked, they was talks about the op but they said it wasnt effectin his breathing so never went ahead with it, he still has it now and his 8 months..
and i know how you feel when you little ones SAT's dropped my little girls used to swing all the time till one day she dipped to i think it was 14% it was horrible, she did this a lot and was back n forword on the CPAP and low flow..
its seems like there on these breathing machines for ever and a day but he will be off it in no time, but its like taken 1 step forward then 3 steps back but somewere along the line they just think sod this i can do this on my own and find all the strengh in the world and amaze you! :D
i hope you little man has a speedy recovery, and you keep srtong coz your lil man needs his mamma n da da for his cuddle :)
xxx
:baby:


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## twins6410

i didnt see all these other replys, you home now!! yey this must be a old post (im new to this as you can guess lol)
well i hope you all have a lovely xmas xx


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## mumof2kids

Thanks everyone. Hope everyone had a great Christmas and new year! Mine has been very busy. Bad news is that they want to put Aaryans u2 up they said his heart rate is too high. Other than that he is doing ok. I dont know when he will come off it, it feels like forever. He is getting fussy with feeds but just hope he puts on weight as he is still very small for his age.


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## 25weeker

Happy new year.

Sorry to hear aaryans o2 was increased. Hopefully it will help and you can start reducing it soon.

I know it's difficult but try not to stress too much about weight. I spent so long stressing about it and when I holly's 6 month corrected app in oct I said to the consultant that I was going to start adding cream, butter etc to her solids to help her weight gain. He told me not to bother as it won't help development it will just make her chubby. He said it will take several years for her weight to catch up which was fine. 2 weeks ago she was 13lb 10oz so I am hoping she reaches the 1 stone mark next week for her 1st birthday!

I hope the feeding gets easier.


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## Agiboma

sorry to hear about the o2 but like 25 weeker said try not to stress and enjoy your LO.
@ 25 weeker YEAHHHH 
Holly is almost 1 year way to goooo:thumbup:


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## mumof2kids

Hi, thanks for your messages. We met with the surgeons and he will have his op next month. I'm extremely stressed about it, after coming home from hospital and now going back and being told he may not get off the ventilator quick. We had a few issues with his np2 formula, Aaryan was not tolerating the powder so we had to switch to liquid but then the go deemed it too expensive. After lots of persuasion and a few disagreements they finally reconsidered as we explained it's only for a few months. He has been gaining steady weight so that's a big positive. I'm loving him being home its the best.


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## michellebrook

Congratulations on the birth of your son. My son was born at 23 wks and 4 days...and yes its been a rollercoaster. He was 10 weeks on a vent as he kept failing extubation until boxing day and then he went from vent to nasal cannula in 2 days. He still needs 0.01-0/02 during feeds but has started breathing in air - he is 37 weeks equivalent today. He had PDA surgery which they termed as a drive thru operation! Maybe for medical professionals but not for parents!! He bounced back in a couple of days which amazed us...such fortitude these babies. Hope all turns out ok for you.


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## mumof2kids

Hi everyone it's been a long time since I've posted on my Aaryan he has been doing well. His hernia has not been showing much and he is not finding it a problem so we can delay his surgery and if he is very lucky they say the muscle can repair itself. O2 wise no fantastic he is still on it but according to the community nurse he could be off anytime this month or next. To be honest I'm quite used to the oxygen now! It's definitely been quite a roller coaster of emotions but slowly and surely we are getting there. Food wise it's going good having it 3 times a day and milk is now 4 times. Can't believe it's coming up to a year now 9th of July to be precise. Would really like to keep in touch with you guys I mainly use facebook so please feel free to add me Bhavisha lathigra that's my I'd. Take care and lots of love to all our babies x


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## AUGmum

congratulations on your little man. I pray he gets better with each passing day!


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## momof2bb

congrats.

My DD was born on June 24 at 25+3 weeks wighing 1lb 05and luckly she is breathing on her own since then.
The NICU can be stressful but nowadays it all end very well. Those baby grow up just like other... 
Your little one will be just fine.:hugs:


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## mumof2kids

Thanks all! Yes it's still raw remembering those
times but we have got through it. Up until now his consultant has said he is developing fine but not gaining enough weight, we are still using np2.


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## Agiboma

glad to hear all is well my 1 year anniversary is also coming up time really flies by


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## mumof2kids

Hey good to hear from you how is the little man?


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