Day 10 just beginning on the NICU and I'm struggling - give me hope

[SparkleBug]

My baby son, George was born one month early on the 19th November via forceps delivery. My whole labour experience was pretty awful apart from theatre and I'm still getting over the emotional trauma of my pain and back labour not being recognised and the physical effects of an episiotomy with third degree tearing. The baby blues have been terrible, I'm having anxiety attacks in my sleep where I wake up unable to breathe and I constantly worry I'm going to lose my George. I feel so sick, my stomach is upset from the constant anxiety and I can barely keep up with feeding, expressing, feeding myself, washing and going to the loo. I'm failing him.

I love him so much, I just want to take him home but he won't eat enough. We're trying so hard, I'm expressing breast milk and we're giving it to him via bottle but a difficult start with tongue tie (now cut), jaundice that continues to linger and tube feeding while trying to breast feed has led to a situation where he's lazy to eat, will fall asleep and generally be quite stubborn. He's had a better time than most really but feeding is a big problem to overcome. Most of the transitional care staff have been awesome once they realise we're busting our asses trying to get food down him but I can't help but feel like they think we're not doing it right or we're being blaize. If he's lost weight tomorrow we're back to tubes and a new plan, certainly no home, and I don't know what happens then. He's well below his allotted millilitres for the day and... please, I'm just sobbing here.

I need to know that someone else has been here, that it takes time to get a premature baby to feed and we'll get back our cuddle time, skin-on-skin and play. I can't live in fear of every little squeak from him, knowing I have to spot his feeding cues and time everything perfectly so he can get a full feed in the time he needs to. Even if you haven't been here, I need to know I'm not being a bad mum sat here in the common room unable to feed her son enough to live. Dad is doing great, he got 65mls in him tonight and he's doing the 3am feed too. I should be sleeping now but I'll only wake up suffocating and feeling like I'm going to die or lying there on edge at every noise because I just don't trust myself to wake when he needs me. It was easier on the ward bar the fact that my husband couldn't stay, but I can't have a team of experts around me all the time, we have to do this ourselves.

How do people do it? I can hack the days mostly, I still cry because my hormones are haywire but the nights are horrendous. I'd sooner not sleep. I find it hard not to cry when I hold him because he's so precious and that's all I want to do. I just want to hold him and keep him safe. God, I'm crying again.

I'm allowed back onto my old ward to talk to someone if I want but I know what they'll say - that all this is normal and my hormones are crazy, I'm sleep deprived and still recovering from quite the ordeal - it all sounds so rational but all I want is to know what happens if he's back on a tube tomorrow, what's the answer to his feeding problem?

I want my boy to come home, I want to be able to feed him and enjoy him, to love him and take care of him. I want all the help he deserves to be strong and well, to be happy and content because right now I don't feel like we're achieving that.

If you read all this, thank you. I wish I could say I felt better for writing it out but I feel like throwing up. One hour and ten until his next feed, maybe we'll get the right amount in him and start this 24hr period right but weigh in is key.

tl;dr My son won't eat enough as a premie and I'm losing my battle with post-natal hormones.

 

[HL28]

Hun I have no experience sorry but didn't want to read and run! Does the hospital.have a breastfeeding support worker or breastfeeding councillor? Are you able to try him on your breast or are you only expressing? Maybe speaking to someone would help. You sound like you've had such a tough time but know that the face your trying so hard already shows what an amazing mum your being!!!! Don't be too hard on yourself you're doing fab. I do think maybe discussing your anxieties would help hun ! Can you sleep during the day better? Sleep deprivation is so hard and does really make you more emotional. Sorry I don't know if I'm being any help but feeding wise if you can offer him the breast more often I would. Breastfeeding by time might not be the key but offering it more often might help!? Xxx

 

[Goat]

Hi hun, I had no idea you were going through this. I was in a really similar position with my eldest, she lost a lot of birth weight and although she never went on a tube feed it was suggested as a real possibility were she not to put the weight on before a certain time. The main practical things I can suggest that worked wonders for us was:
- the main one: don't be afraid to introduce formula!! So many of my midwives made me feel like crap for doing it but it was one of the things that really helped. It will bring their weight up super quickly. I did formula top ups until she regained her birth weight and stopped right after and was still able to ebf for the next 13 months.
- I'm sure you're on this already but stick to a rigid feeding schedule, 2 or 3 hourly. If he's sleepy, strip him to his nappy, tickle his feet, blow on his face.
- keep expressing as you are, even if you're offering formula. Expressing will keep your milk supply where it should be should you want to ebf after.
- try and up their intake by 5mls each day.
- once he's had a feed and is satisfied, try offering him the breast so that he knows how to latch.

To help deal with the exhaustion, I would actually sleep whilst expressing. Get hubby to do most of the feeds and nappy changes. Do not be afraid to call on close family to help out!

And on the emotional side, if you want to cry then please make sure you cry. Cry your heart out as it really really helps. Don't be afraid to talk about thus experience with hubby or friends and family. I found talking about everything that had happened - birth/nicu stay/weight loss etc etc the biggest help.

None of this is your fault, you are clearly an amazing mum and you're doing brilliantly!! Your son has been through a lot for a 10 day old, had lots of iv drips that have given him excess fluid and as soon as he's off them it's no wonder he'll lose weight. He will put it back on, this horrible period will pass I promise you!

But do not be afraid of formula as it will significantly help and it in no way means you won't be able to successfully breastfeed. Massive massive hugs chick and let me know if you need anything else.xxx

 

[Staceyjem]

Hi , I would just like to say I was you 7 months ago and I want to reassure you it doese get easier over time .My little girl was born at 28 weeks weighing 2lb and we had the same problem with breastfeeding and her weight gain ... the things that worked for us was firstly the support from the breastfeeding support lady .. dont be afraid to ask for help ...secondly when put to the breast she wouldnt do anything so whilst being tube fed I put her to the breast so she would link this with getting food ... and sure enough it just clicked after a few days , a nipple shield also helped ,tickling feet , softley blowing in face if she kept falling asleep midway and just patience to be honest . As for the weight gain if he doesnt gain there is something they can add to ur expressed milk which works a miracle so dont worry about that .The emotional side however I have to tell u will get better as time goes on and you see him progressing ...I knw its hard to believe that right now but I promise you it will ..of course u will always worry and be overprotective of your little boy just as I am of my little girl but i think that is natural because they came earlier into this world but i like to look at it as there little fighters and couldnt wait to meet us .....have faith that he is in the best place to help him and he will be home before u know it .. and trust me it will be the happiest day

 

[Ella1979]

First of all, you are absolutely not failing your son. It sounds like you're being amazingly strong for him and expressing as well as going through all of that - you're doing brilliantly.

I went through a similar thing with my daughter when she was born at 36 weeks weighing just 3lb 11oz. She was in neonatal for 3 weeks. I actually never produced any breastmilk due to my own health problems (pre-eclampsia).

Basically she was tube-fed. We kept trying a bottle and she'd fall asleep after a couple of little sips, it was very frustrating. This did go on for a while and was one reason why we ended up in SCBU for so long; the other being her weight - they wouldn't discharge her until she was at least 4lb. We had days where it looked like we were making progress with the bottle, then she'd go back to tube-feeding as she wasn't taking enough. I hated it when they had to replace the tube.

I think the answer to the tube/bottle feeding is "time". It's a case of him getting strong enough to stay awake for long enough to take a reasonable amount of milk. Sometimes you can get a baby who'll suddenly just get the idea and it's all sorted. Other times it takes a bit longer.

I also felt kind of judged by the neonatal nurses, but I think that's just the environment. It's completely unnatural as you feel you should be at home with no one but your OH to see you change nappies, wash, dress and feed your baby. I had to give my daughter her first bath in the middle of the neonatal ward and could feel all the parents as well as a couple of nurses looking at me!

The whole environment is emotionally draining and having a baby is such a major life-change anyway. Just reach out as much as you can to the nurses and ask for help. That's what they're there for.

Try not to lose heart if he has to go back to tube-feeding for a couple of days. Just cuddle him and get skin-to-skin as much as possible. Your little boy will reach a stage where he's able to go home and that will be the most amazing day ever xx

 

[SparkleBug]

Just want you to know I'm here and reading. George gained weight but the three hourly feedig regime isn't sustainable, it's taking more and more effort to force food down and we're risking him rejecting the bottle. He won't take breast anymore either though he's partial to licking anything I express now his tongue tie is cut. We've switched to baby led feeding for the next 24hrs to see whether he wakes himself enough and wants enough to put on weight. That means at least two more days minimum. I can do it. I feel a bit better, still constantly nauseous and anxious but less distraught. I think I might have a water infection or sore stitches which isn't helping, that'll get seen to tomorrow hopefully.

I'm going to try and sleep now but thank you for your replies and advice, we're takig it all on board and discussing formula as our next option. Daddy's tired too so looks like we'll all be snuggling up. I'll check back in soon with progress. Thank you, i feel less alone tonight.

 

[Ella1979]

Just wondering how you're doing? xx

 

[SparkleBug]

We're home! Really quick update to say that sticking with baby led feeding has been the way forward, George is enjoying eating more and more and although he's still technically under his threshold of millilitres, he's putting on weight. I still have little cries every now and then but my confidence is building and my mum cooking for us is making a huge difference. We're focusing on George, sleep and sorting things that we didn't have time to do in the last month.

Hopefully he'll keep progressing, he even suckled for 12mins last night so I might even have proper breast feeding in my future. Thank you for your kind words, support and advice, I really was bereft in the NICU. Going to have myself a little sleep before the night starts, I'm getting better at handling the nights now I'm not so stressed about his 24 hourly amounts. I feel like I'm finally decompressing, well, until the hormones hit again.

Much love to you all. Katie

 

[HL28]

So glad to read your all home and together!! You're doing amazingly well. If your keen to breastfeed get him to suckle as often as you can. It's amazing he suckle for you last night. Make sure you look up your local breastfeeding support group they can really help hun. Good luck and so glad to read he's home xxx

 

[Ella1979]

So pleased to hear you're home! I remember being totally obsessed with how much my daughter was taking and writing it all down in a book to calculate her intake over the days. Something to bear in mind is that some babies even out their intake over a day and others over a week. My daughter falls into the latter category and always has - she'll have days where she'll eat/drink amazingly well and then others where she'll pick at everything. Hope all is going well xx

 

[babysunshine]

hope your doing well. Been through same although my daughter was allowed home she was losing weight and not picking it up again. I can understand the emotional state and the feeling of failure. I promise you it gets easier , once my daughter turned 7 weeks it became better at 10 weeks it got so much easier. Now my daughters great, she's catching up with everything.