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??

 

[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

 

[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

 

[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.

 

[keldac]

firstly congratulations

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

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

 

[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

 

[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

 

[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.

 

[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?

 

[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.

 

[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.

 

[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?

 

[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.

 

[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.

 

[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

 

[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.

 

[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

 

[Agiboma]

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

 

[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.

 

[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.