Another Newbie

[dainti2001]

Hi

I signed up today after months of browsing the forums. I had my baby 6 weeks ago at 25+2, she weighed 1lb 3ozs. The last few weeks have flown by but i don't know how to feel at the moment because one day she will be ok and the next day she is not too well. She is gaining weight rally slowly, 6 ozs in 6 weeks. She was on ventilation then taken off 10 days ago and was on CPAP but she is back on the ventilation because she had a rough day today.

I feel numb, i feel like i have no more tears in my tear ducts and crying isn't doing any good anyways. I cant be happy when she improves because the next day i will be told she isn't doing so well.. I feel selfish like am being selfish because i want her to improve so i can take her home but she has to do her developing at her own rate. I can't sleep, and i go to the hospital everyday and look at her in the incubator, sometimes i can't even touch her.

Even though i have my husband who is very supportive, i feel so lonely. My friends don't come round anymore and when they call they have nothing constructive to say. I just feel like i am in a daze and i will wake up soon. Am sorry for all that dribble, i just needed to offload.

 

[25weeker]

Hi

Congratulations on the birth of your baby girl.

My little girl was also born at 25+2 in January weighing 1lb 7oz. She spent 14 weeks in neonatal before coming home in April. During that 14 weeks she came of the vent after 4 days but went on it again 4 weeks later due to an infection. She had quite a large PDA which was treated with medication and quite a few episodes of stopping feeds for suspected NEC but was actually just a cpap tummy full of air. She was also slow to gain weight and was put on breastmilk fortifier once she got to a kilo.

She is now over 8 months actual and 5 months corrected. She is still small only weighing 11 1/2lb but is currently doing everything a 5month old baby should. She has chronic lung disease due to being on oxygen until 38 weeks but never came home on oxygen.

The journey through neonatal is a rollercoaster with steps forwards and backwards and some days feeling like you are only going backwards. Try and take some timeout for yourself, even half hour and sit and read a magazine and eat junk food. I ate so much chocolate during the 14 weeks!

There were days I didn't want to get out of bed but somehow I managed to get up everyday and go to the hospital and you will too. I found it especially hard not being responsible for her and although I loved her to bits I felt like a visitor everyday and couldn't actually believe one day I would take this lo home. Your friends probably don't know what to say because unless you have actually experienced neonatal you could never imagine how difficult it is. I certainly had no idea what a rollercoaster it was before it happened because the stories you read about always gloss over the bad bits!

These forums are great for answering any questions you have. If you want to know anything else about my time in the unit ask away. There were 2 other 25 weekers in the unit at the same time as me and we all had very similar forward and backward steps.

Take care

Xx

 

[Agiboma]

congrats on your baby i also had my little boy @ 25+2 we are still in the NICU. I know how you feel cause i was that way up until a few days ago, this is day number 73 in NICU for us. But my LO has been doing very well. The NICU is a rollercoaster and what i can say to you is to enjoy the acheivements. Your LO will come home with you one day its just gonna take some time. stay strong mamma

 

[katy1310]

Hi and congratulations on your LO...

I would completely echo what 25 weeker said. I had all those same feelings as well. My baby was slightly later - 27 weeks and weighing 1lb 13oz - but we had a 120 mile round trip to the hospital which was really tough and exhausting.

I don't really have any other advice to add - 25 weeker summed it all up brilliantly! - but we are all here if you need a chat.

 

[Marleysgirl]

The others have all said it so well. Please try and take care of yourself, you will need all your energy for the magical time in the future when you get to bring your little girl home

And keep us all updated with her progress! We love to hear how other preemies are doing.

 

[embojet]

.
Like Marleysgirl said, everyone as said it all so well. Definately keep us updated, she is gorgeous x

 

[mumof2kids]

It's such a testing time trust me I'm riding that rollercoaster as we speak its been 78 days today and counting. Not nearing the end but you have no choice but to ride on the ups and unfortunately the downs.

My baby is born 26+2, I was told from 21wks that he will die as he was severe IGUR with abnormal dopplers. The flow reversed and I decided to take him out he was a mere 600 grams about 1lb 5oz. 11 weeks and still counting the days.

I agree with 25 weeker that noone understands fully what we go through unless they have experienced NICU. It's the toughest thing I've been through in my life. I've cried so much that I had no tears left. But you know what your baby will amaze you, preterm babies are fighters. I know it's hard, but focus on the positives of your baby and her achievements. That's how I'm dealing with things. My baby was so not so stable on the vent few weeks ago constant desats severe CLD, PDA. Today I was told my baby is the most stable on C-PAP in the room. Things change there will be improvement but also some negatives through the NICU stay is a given.

Please speak to us we all understand the pressures. Spend as much time u can with your baby, you can get involved with her cares, when the time is right have many cuddles, speak to her give her all the positivity you can. Things will improve when the time is right but I totally understand it's so hard when they go 2 steps back.

Good luck with the journey I pray for u that its a short one and you have your baby home soon x

 

[Marleysgirl]

My baby is born 26+2, I was told from 21wks that he will die as he was severe IGUR with abnormal dopplers. The flow reversed and I decided to take him out he was a mere 600 grams about 1lb 5oz. 11 weeks and still counting the days.

That must have been crushing to hear, Mumof2, and a bit harsh of your medical team. My abnormal dopplers were discovered at 21wks and Andrew was classed as IUGR from the 20wk scan onwards; he was born at 29+1 weighing just 638g - but at no point was I told "He will die", I was always told "We will do our best to help him live".

 

[mumof2kids]

My baby is born 26+2, I was told from 21wks that he will die as he was severe IGUR with abnormal dopplers. The flow reversed and I decided to take him out he was a mere 600 grams about 1lb 5oz. 11 weeks and still counting the days.

That must have been crushing to hear, Mumof2, and a bit harsh of your medical team. My abnormal dopplers were discovered at 21wks and Andrew was classed as IUGR from the 20wk scan onwards; he was born at 29+1 weighing just 638g - but at no point was I told "He will die", I was always told "We will do our best to help him live".

I know from 21 weeks we were told baby is very small, then I was transfered to the Fetal Medicine Dr who from 22weeks only said baby is very small and more than likely will die inside me he kept repeating this. I was living a constant nightmare day by day. I went to hospital a number of times cos of fear the baby is not moving. They were so negative. At 25+5 they said flow has reversed we won't deliver come next week for another scan. I put my foot down and said how can I come next week the flow has reversed see me in a few days he unwillingly agreed for the scan but mentioned that even if things get worse he still won't deliver me. I couldn't understand after all the Dr's are there to save lives, preserve life. All they were doing was trying to kill my baby. I went in at 26+2 which was my choice and things had deteriorated so much that we had 12-24 hours left. Again all the kept saying to me was to let the baby suffocate inside as he will be severly brain damaged he won't be able to live a normal life. Me and my hubby decided long time ago that we want our baby no matter what. We want to give him a chance, after that it's up to him to fight and he did. I've complained about the Dr's but who knows whether they will do anything.

 

[dainti2001]

My baby is born 26+2, I was told from 21wks that he will die as he was severe IGUR with abnormal dopplers. The flow reversed and I decided to take him out he was a mere 600 grams about 1lb 5oz. 11 weeks and still counting the days.

That must have been crushing to hear, Mumof2, and a bit harsh of your medical team. My abnormal dopplers were discovered at 21wks and Andrew was classed as IUGR from the 20wk scan onwards; he was born at 29+1 weighing just 638g - but at no point was I told "He will die", I was always told "We will do our best to help him live".

I know from 21 weeks we were told baby is very small, then I was transfered to the Fetal Medicine Dr who from 22weeks only said baby is very small and more than likely will die inside me he kept repeating this. I was living a constant nightmare day by day. I went to hospital a number of times cos of fear the baby is not moving. They were so negative. At 25+5 they said flow has reversed we won't deliver come next week for another scan. I put my foot down and said how can I come next week the flow has reversed see me in a few days he unwillingly agreed for the scan but mentioned that even if things get worse he still won't deliver me. I couldn't understand after all the Dr's are there to save lives, preserve life. All they were doing was trying to kill my baby. I went in at 26+2 which was my choice and things had deteriorated so much that we had 12-24 hours left. Again all the kept saying to me was to let the baby suffocate inside as he will be severly brain damaged he won't be able to live a normal life. Me and my hubby decided long time ago that we want our baby no matter what. We want to give him a chance, after that it's up to him to fight and he did. I've complained about the Dr's but who knows whether they will do anything.

I went through close to the same thing, they told me she had downs syndrome and i should terminate (even tho i had a 1 in 17000 chance of have a DS baby), they told me she was small and if she came early they are not going to do anything for her because she will have brain damage and we will be doing more harm than good... I have to have very strong words with a few doctors, i ended up with preeclampsia as my blood pressure went through the roof because of all the stress.

Thank you all for your kind words, i feel a little better that i have let it out and there are people who i can relate to. its been 47 days and as you say i have to focus on the positives. I will try and remember that everytime she has a set back. I hope and pray that all our babies pull through and amaze us in many more ways than they have already. xx

 

[Agiboma]

they will amaze you I also had pre eclamsia among other issues so i know how you feel and yes you have to stand up for your LO hang in their mamma it will get better sooon
g-d is so good.

 

[Laura2919]

Hi Hun,
Congratulations on the birth of your baby! I am Laura and mummy to twin girls Chloe and Jaycee who were born at 29 weeks and 6 days. They spent 4 weeks in NNU and then they were home. They are 20 months old today and I cant believe where the time has gone!
I remember with my friends no one knew what to say or what to do. We asked that only family i.e my mum and dad, OH mum dad, brothers, sisters, my niece, and my aunt and uncle were to visit the hospital and that everyone else would have to wait until they came home. I didnt want people feeling sorry for me, OH and the babies. I just wanted them to be surrounded by love and support and I knew that my family and OH's family wouldnt judge what they looked like, being so small and Jaycee looked like a preemie Chloe didnt much. Those are all thoughts I was thinking and when they came home we got visitors but not many..

Its nice to talk to people who know what you went through and the experiences you face along the way. In only 4 months time my girls are going to be 2 and will officially experience the world as toddlers and no longer be reffered to as preemies but mummy will always remember just how tiny and how much her babies had to fight!

Hope you enjoy talking to us all!