Coping with a newborn with serious health issues

[ChangedMyMind]

Hello,
My delivery will be in about 5 weeks. I've already been told by the surgical team that we'll have about 5 minutes with her before they take her away to prep her for surgery. I'm having a c/section so I cant even take her to theatre. She'll be on a respirator and IV line for perhaps up to a week so I wont be able to pick her up or hold her, only touching her through the heavily sanitised crib. For the first few weeks, after the IV line, she'll be fed through a tube down her throat in to her stomach. Then I cant actually go home from hospital, or take her from hospital, until she can breastfeed or feed from a bottle which could take weeks.

So I'm kind of worried about 2 things, firstly is bonding with her if I cant hold her or touch her. Secondly, and somewhat selfishly, how am I going to cope with being about as useful as a shag on a rock with my own baby? I know I'm not the first to experience this, or feel like this, so to other mothers out there... what coping strategies did you use after having such a fragile baby??

I'm not sure if I should be sitting with her from the time I wake up til the time I go to bed or whether its even allowed?? I'm thinking that to have all those issues in my face for 18 hours a day might be a bit overwhelming and I should take time out away from it but then I'll feel guilty for not being with her and what if something happens while I'm not there??

Then what happens when I get home with this fragile little thing???

Oh I forgot to add, that for the majority of the week I'll be on my own in the big city hospital. We live 4.5 hours away so my partner has to stay at home during the week to work.

[Proudwifenmum]

Firstly, huge hugs to you - this all must be so daunting!!
I haven't been through what you are about to go through, but for bonding could you put a blanket in the humidity crib so bubs recognizes your smell? Like maybe sleep with the blanket for a few weeks before birth then put it in the crib? Sorry I know that isn't very helpful, just couldnt not reply... Xoxoxo

[speckledfrogs]

Can you visit the nicu ward and ask rhe other mums or nurses? They may help. Big hugs, I'm facing the same thing xxx

Sent from my GT-I9000T using Bubhub

[ChangedMyMind]

but for bonding could you put a blanket in the humidity crib so bubs recognizes your smell? Like maybe sleep with the blanket for a few weeks before birth then put it in the crib? Sorry I know that isn't very helpful, just couldnt not reply... Xoxoxo

Thanks, I did think of something like this but she has to be kept in a sterile environment so she'll only be wearing a nappy and nothing else in the crib with her. They said I can touch her feet etc but she'll be so little and on pain meds so she wont respond a great deal for the first few days. I always see that they push skin to skin on delivery and they put them right on your chest which I imagine is the 2 heartbeats next to each other but we'll only have her for 5 minutes and I dont think holding her foot is going to have quite the same effect.

[mumtomarmalade]

Hi Proudwifenmum, I don't know your story or your child's condition but I felt compelled to reply.

My son was born in Central QLD and we didn't know until a few minutes afterwards that he has several major heart defects. He was flown to Brisbane straight away (700km's away) with the Royal Flying Doctors so I didn't see him at all before he left. I also wasn't able to join or meet him until 4 days afterwards but my husband and other son flew down on a commercial flight the same day so they were with him and text me lots of photos.

Anyway, before he was discharged form hospital several weeks later he had one 2 hour minor surgery and one 10 hour open heart surgery and enough complications to almost give me a heart condition too!! We were not able to hold him either because he was attached to too many lines but we just sat by his side, stroking him and talking to him. When he wasn't sedated we made lots of eye contact and sang songs. It might sound silly but even reading them a book makes them recognise your voice and is soothing to them.

I don't and didn't feel any less bonded with this child (who is 2.5 now) then I did my first... actually I think the bond may have actually been stronger if anything. We did sit with him from the time we woke up til the time we went to bed, but we were 10 hours form home and had absolutely nothing else to do and no where to go!!

About the feeding you were concerned about... my son was 100% fully breastfed for 29 months. Even in the 4 days we were apart he was fed drip nutrients, not formula (as suggested by the Mater Mothers NICU.) Tube feeding wasn't such an issue. I expressed a lot and it filled in the time if anything because hanging around the hospital for weeks and weeks is incredibly boring!!! I didn't get much, but he wasn't having much and I managed to build up a pretty big stock pile. They did ask when he was strong enough if we wanted to try EMB in a bottle but we decided not to so as not to affect attachment later on and that was a key decision I think.

You asked about when you get your fragile baby home... well we were worried about that too. There is something very reassuring about all the monitors that they are attached to and once your home you can't depend on that anymore. Our boy was also only 2.4kg when we got him home, (birth weight 2.8 full term baby in Brisbane for 7 weeks) plus his sternum was wired together so he was like a china doll!! They really aren't as fragile as you think though. It's incredible what such a tiny little baby can withstand and come through the other side ok.

[SalsaMama]

Lots of hugs. I can't even imagine what you must be going through. When my DS was born he was in the special care nursery for just over a week and although we couldn't cuddle him etc, when he was upset I would stroke his foot and sing and talk to him. He used to always respond to that and settle down a little bit, though I think it was more because doing that made me calmer and he picked up on it. And I used to sit by his cot all day too. Your baby will still be hearing your soothing voice, and will be bonding with you that way as she'll remember you from when she was in utero.

I hope all goes well with the surgery for your little one. I hope you manage to get some support from the staff in the hospital too, as it can be very emotional and overwhelming. The midwives are usually great to talk to, but otherwise most hospitals have a chaplain you can have a chat to. Lots and lots of hugs for you.

[Proudwifenmum]

Hi Proudwifenmum, I don't know your story or your child's condition but I felt compelled to reply.

My son was born in Central QLD and we didn't know until a few minutes afterwards that he has several major heart defects. He was flown to Brisbane straight away (700km's away) with the Royal Flying Doctors so I didn't see him at all before he left. I also wasn't able to join or meet him until 4 days afterwards but my husband and other son flew down on a commercial flight the same day so they were with him and text me lots of photos.

Anyway, before he was discharged form hospital several weeks later he had one 2 hour minor surgery and one 10 hour open heart surgery and enough complications to almost give me a heart condition too!! We were not able to hold him either because he was attached to too many lines but we just sat by his side, stroking him and talking to him. When he wasn't sedated we made lots of eye contact and sang songs. It might sound silly but even reading them a book makes them recognise your voice and is soothing to them.

I don't and didn't feel any less bonded with this child (who is 2.5 now) then I did my first... actually I think the bond may have actually been stronger if anything. We did sit with him from the time we woke up til the time we went to bed, but we were 10 hours form home and had absolutely nothing else to do and no where to go!!

About the feeding you were concerned about... my son was 100% fully breastfed for 29 months. Even in the 4 days we were apart he was fed drip nutrients, not formula (as suggested by the Mater Mothers NICU.) Tube feeding wasn't such an issue. I expressed a lot and it filled in the time if anything because hanging around the hospital for weeks and weeks is incredibly boring!!! I didn't get much, but he wasn't having much and I managed to build up a pretty big stock pile. They did ask when he was strong enough if we wanted to try EMB in a bottle but we decided not to so as not to affect attachment later on and that was a key decision I think.

You asked about when you get your fragile baby home... well we were worried about that too. There is something very reassuring about all the monitors that they are attached to and once your home you can't depend on that anymore. Our boy was also only 2.4kg when we got him home, (birth weight 2.8 full term baby in Brisbane for 7 weeks) plus his sternum was wired together so he was like a china doll!! They really aren't as fragile as you think though. It's incredible what such a tiny little baby can withstand and come through the other side ok.

Lol I wasn't the op - just someone with a useless reply. Xoxoxo

[ChangedMyMind]

Thanks you so much, particularly MumtoMarmalade. I know I'm not the only one to go through this so it helps to hear other people's story, sometimes its just getting if off one's chest that helps a bit. I talk to her all the time now so she'll know my voice so I guess thats what I'll have to keep doing once she's out.

She'll be on the drip for the first few days until the surgery heals (its the connection to the stomach that the surgery is for) and then they'll start with expressed breast milk. They'll keep increasing the tube feeds until she's taking enough then try to get her to breastfeed but as she also has Down syndrome so there might be an issue with her oral muscle tone but in either case it will still be breast milk :fingerscrossed: no matter which way she gets it. We're going to Mater Mothers too!! She has cardiac issues but the cardiologist says at the moment the holes are small enough that they can address the stomach surgery first and wait and for a few months for the cardiac surgery. I'm not looking forward to sitting around the hospital but like you say, there's nothing to do anyway, and I'll be on my own so no-one to do anything with anyway. I'll have to stock up on New Weekly etc, this little girl will know more about Posh Beckham's wardrobe than her own family by the time she gets home!

MtoM I cant imagine how hard it must have been not to have been with your baby for those 4 days but its inspiring to hear that everything has turned out for the best. These little country kids (& mommys) are made of tuff stuff huh!!

[Moosie]

Wow, it's so daunting when you think of the journey ahead :hugs:

I have not been in your exact situation, but I have been through a rollercoaster journey myself and thought it may help to share.

I had an emergency c-section at 31 weeks to deliver my DS. He was taken away straight away, so I didn't get to even see him, let alone hold him. I was in recovery for about 5 hours due to high blood pressure and was desperate to meet my baby! I got to see him briefly just before midnight (they wheeled my bed into the NICU). It was another 2 days before I got my first skin to skin cuddle & it was magic. Despite missing that early contact I felt a strong bond as soon as I held him.

One of the lowest points was the day I got discharged from hospital & had to go home & leave my boy. I bawled my eyes out & realised it was going to be weeks before we got him home. The added stress of a 2 hour round trip to the hospital meant we couldn't just drop in whenever we wanted. So the daily routine of visiting DS every day began. He would have a little try each day at breastfeeding & he finally got it one day Once he started breastfeeding properly things moved pretty quickly & we were able to take him home. He spent 5 1/2 weeks in hospital all up.

I think you’ll be fine with the bonding, just being there with them, holding their hand and gently talking to them all helps. You will get to do ‘cares’ periodically as well, where you take their temp & do a nappy change. After their tube feed is a good time for a snuggle. We also enjoyed being able to dress our DS in clothes we bought from home (though they were all too big for him!). Don’t worry about being useless either, as just being there is very important for both of you. And when you can’t be there in the room, just remember your bub is in very safe hands.

The best advice I can give is just take it one day at a time. It's normal to break down occasionally & feel sorry for yourself, just let out the emotion & regather yourself. You WILL take your precious baby home, and you will be able to put the experience behind you.

I hope all goes as best as can be expected for you & bubs :fingerscrossed:

[lovelymum]

Hi just wanted to pop in and say hi :wave: Whilst I have not personally been in your position, my nephew has Downs. My BIL & SIL were not aware during her pregnancy so it was a bit of a shock but the hardest part was he was quite sick so required to be transfered to another hospital and go into the NICU. My SIL would head to the hospital in the morning for a few hours and then go back in the evening with my BIL for a few more. She had a pretty hard birth so was still recovering from that and for you will also need to give yourself time to recover from your C/S. Don't think of yourself as useless whilst bub is recovering from surgery you have the ability to try and focus on producing milk for her when she is ready to start tube feeding and believe me getting your milk in will keep you pretty busy in the first 3-4 days. View your breastmilk as the most important thing you can give her and focus on keeping yourself well, remember to eat, drink lots of water. You will find you will probably need to use a breastpump every 2 - 3 hours to encourage your milk to come in and also to keep up your supply (thats 24/7 as well no breaks overnight). I would imagine that the hospital will freeze your milk/store your milk for you to be used for her feeds. My SIL would also bring expressed milk in marked bags into the hospital and they would store it to feed my nephew. My nephew sadly could not breastfeed as he had a cleft palate and was not able to latch on however you could contact the ABA (Aust breatfeeding association) and they may be able to provide you info for feeding a special needs baby - I guess sometimes preparation can be the key to success and I know they have loads of information available and access to breastfeeding councilors who can provide support and information.
Good luck, you must be so nervous but so very excited to be meeting your little princess soon xxx

[mumtomarmalade]

Sorry Proudwifenmum... when I scrolled up to see the OP's name I didn't go far enough!!

Changedmymind, the Mater Mothers and Mater NICU are amazing. I was transferred down and spent 8 nights in the Mothers. (Had my own health issues :rolleyes:) My son only spent 5 days in the NICU there but it was wonderful being so close to him only 2 floors down!!! You get so much support without even asking for it. My boy was was then sent over to the Mater Childrens PICU/Special Obs & wards for the rest of his stay and they are amazing too. They may very well transfer your bub to the children's hospital also as the NICU is really designed for more for actual premies.

Will you be commuting to and from Toowoomba every day or staying around the hospital? If you are staying I really recommend trying to get into Reg Lenard Lodge, we found it to be much better then Ronald McDonald. It's room with ensuite, kitchenette and free TV, air con etc. McDonalds is communal most things and TV/air con you pay extra. The steps may be a bit of an issue to get to the Mater after C/S but so is the hill from Ronald McDonald so it's much the same in that regard!!

Good luck and my thoughts are with you. xx :fingerscrossed::goodvibes::goodvibes:

[Ky]

Hi Changedmymind

I'm sorry that you and your precious little girl are facing such a battle ahead. It will all be worth it and somehow, you will just naturally cope!

I was a country patient too when my Ruby was born at westmead. She had hypoplastic left heart so was taken away from me to childrens hospital within an hour of the caesar meaning I got to get a glimpse of her and then nothing at all until I managed to nag the midwives enough to let me out of bed the next morning (I wore them down by 4am - lol) and arrange a porter to take me there!

I didn't spend a lot of time with her before her surgery whilst she was in HDU as I felt like I just got in the way. I felt like a "shag on a rock" as you put it and it was hard to handle how helpless I felt watching someone else doing all of her care and standing by whilst she went through tests etc. When she was in the PICU after her surgery, I was encouraged to stay as long as I wanted and come and go at any time of the day or night.

I got to hold her 3 times before she went into her first surgery at 3 days old. They were only short periods as she quickly got exhausted but so precious. Afterward, I could stroke her, rub her head, talk and sing to her. I found that I felt I knew her personality and really bonded with her despite the physical barriers (machines, tubes etc) and actually found her time in PICU very non distressing.

I also expressed as much as possible as through that time, it was the only thing I really could do and it made me feel more important to her as I was the only one that could do it. She ended up with 22 bottles of expressed milk waiting in the freezer when she passed away at 9 days old.

It wasn't an easy time but I also cannot say that I was unhappy. She knew my voice, she felt my touch (even though she was in a coma) and I feel like I gave her a life surrounded by pure love.

The people that work in the NICU and PICU know exactly what you are going through. They understand your need to be close and also understand if it is getting too much for you. They treat our little ones with so much love that you know that they are safe when you are not there.

Please remember that through all of this you have just given birth and need to remember to care for yourself as well. Your precious girl will have 24 hour vigilant care but you will be the only one who can look out for you.

Contact the heartkids team at the hospital - they are a wonderful support network. It doesn't matter that your daughter's heart isn't the main concern at the time, it is still a concern and they are fantastic people to talk to. Make as much use of the hospital social worker. They will have information on what you can have access to and help you on the more practical sides of things like financial.

Please know that you are not alone through this - just pop in here and we will listen and support you to the best of our ability xxx

[ChangedMyMind]

Changedmymind, the Mater Mothers and Mater NICU are amazing.
Will you be commuting to and from Toowoomba every day or staying around the hospital? If you are staying I really recommend trying to get into Reg Lenard Lodge, we found it to be much better then Ronald McDonald.
Good luck and my thoughts are with you. xx :fingerscrossed::goodvibes::goodvibes:

Thanks MtoM. I am so in love with everyone at the Mater so far so I have every confidence in them. They organise everything, I just have to turn up on the right day. We've moved further out west from Toowoomba so its a 4.5 hour one way trip to the mater. Luckily they've booked me in to move in 2 weeks in to Reg Leonard for 2 months or so - 3 weeks before delivery and maybe 6 or so afterward. Is there anything you suggest I take with me because I know some of the facilities are shared so thought it might be easier to take some stuff myself like an iron etc.

And thank you to all the contributors, you've bucked up my spirits no end x x x

[ChangedMyMind]

I also expressed as much as possible as through that time, it was the only thing I really could do and it made me feel more important to her as I was the only one that could do it. She ended up with 22 bottles of expressed milk waiting in the freezer when she passed away at 9 days old.

It wasn't an easy time but I also cannot say that I was unhappy. She knew my voice, she felt my touch (even though she was in a coma) and I feel like I gave her a life surrounded by pure love.


Oh boy you just blew me away :hugs: but I just want to tell you that I can absolutely 100% guarantee you that even though she was in a coma she could hear you and feel you. I had an accident about 10 years ago and I was in a coma for about 3 weeks and to be totally honest, it was just like being in the next room while everyone else was in the adjoining room. My boyfriend at the time used to sing this song to me every day and when I regained conciousness I said to him I cant get that bl**dy Superman song out of my head, its driving me crazy. And he was totally shell-shocked because he told me he used to sing that too me every day. So you are aware of people being there, you're just not aware of the passage of time. Big hugs, women like you inspire me. Thank you for taking the time to message me. :hugs:

[mumtomarmalade]

Thanks MtoM. I am so in love with everyone at the Mater so far so I have every confidence in them. They organise everything, I just have to turn up on the right day. We've moved further out west from Toowoomba so its a 4.5 hour one way trip to the mater. Luckily they've booked me in to move in 2 weeks in to Reg Leonard for 2 months or so - 3 weeks before delivery and maybe 6 or so afterward. Is there anything you suggest I take with me because I know some of the facilities are shared so thought it might be easier to take some stuff myself like an iron etc.

And thank you to all the contributors, you've bucked up my spirits no end x x x

Just whatever you do, don't forget your paperwork!!! ;);) Janis from Reg Lenard is a stickler for it and so long as you get it all filled out, you'll be just fine there!! :D:D :laughing:

I am not an ironer so I couldn't tell you about that but there was nothing we used or needed that was communal, everything was in the room. Apart from the washing machine I suppose. :)

There is a Coles not too far away (probably a touch ambitious to walk but you could) so we filled up the fridge on the first day. If you have a car they have from memory 8 spaces. You can't reserve them though so it's first in first served. We stayed there during our sons second open heart surgery and never had a problem parking though and all rooms were full.

I really can't think of much that you will need to take with you apart from the obvious things. All the very best. :yes:

[mumtomarmalade]

Hi Changedmymind... I have been thinking about you this last few weeks but never come onto this forum? Have you had your bub yet? If so, how are things going? Take care of yourself and all the very best. xx

[Hokey Pokey]

Hope everything went ok xx