Establishing breastfeeing when your baby is in NICU/SCN.

[DaintreeDream]

My baby is due to be born in December. She has a heart problem 'aortic interruption' and a small 'hole in the heart' and is going to require admitting to NICU and surgery shortly after birth. It is my understanding she will spend 2-3 weeks in hospital.

When my DD was born she was also admitted to NICU and spent 3 months in hospital, she would not latch on due to having pierre robin syndrome (cleft palate and small jaw) and I was offered no support in establishing any kind of breastfeeding relationship, they did not even suggest me to express for the first time until 24 hours after her birth. I did end up expressing full time for 11 months until falling pregnant with this baby.

The hospital where I am delivering understand how important it is to me to breastfeed my baby and are going to arrange for me to see a LC before my babys birth, I think that this is a great start.

My baby will be transferred to another hospital, an hour away, this could be immediately after birth or within 48 hours, I may require a CS and therefore not be able to go with my baby if she leaves straight away. I was thinking of attempting to express some colostrum before babys birth to take to hospital so it can be transferred with baby if needed. (I will talk to my LC about this when I meet with her).

I basically want to know how hard it is going to be to establish a breastfeeding relationship with my baby when she will be in hospital (based on me being able to hold and feed her when required if her medical needs aren't to great).
Will I need to stay there 24/7 or would I be able to establish day feeding and go home to be will my DH and DD at night? (Once again the hospital will be about an hour away from my home)
I will refuse any FF being fed to my baby, she will have exclusive EBM.
Should I refuse them to feed her with a bottle as this would cause confusion? I believe she will have a NGT for at least her inital days in hospital until she has recovered from her surgery.

Once again these are all questions I will be asking my LC when I meet her, however I just wanted to get some ideas/understanding in the meantime and I am sure that more questions will arise before her birth.

Thankyou for any assistance you could provide.

[MantaRay]

DD, it must be so stressful for you atm, but you are doing a wonderful job of preparing things in advance.

Establishing bfing in that situation is certainly more difficult, but definitely possible. The two keys are frequent expressing, and as much skin to skin contact as you can. While you are separated obviously you can't have skin to skin contact, but you can make up for it when you are able. In your situation, expressing colostrum from 36 week is probably a good idea.

I really suggest you give the ABA helpline a call on 1800 mum 2 mum to talk it over. The ABA has two really great booklets about this - Breastfeeding and Hospitalisation, and if you need a caesar there is a booklet for that also. They are just $5 each and have lots of practical suggestions and quotes from mums who have done it before.

All the best hun. I know things are going to be tough for you, but if anyone can do it, you can. You have done such a great job with Miss M.

[The[cookie]Doctor]

My sisters were in hospital for five weeks. Premmies, and NGT fed for the first two-three weeks. They never had a bottle in hospital so yes I think you can and should refuse it. RWH used to get the babies to suck on those little finger dummies while feeding to help them learn to suck.
Not much help and I know your circumstances are different, just my slice of input.

You sound really prepared with LC etc, good luck.

[BellyBelly]

I had a client who had to have a c/s due to placenta previa - she started bleeding and had to go in. But before she was in theatre, I asked the midwife for some test tubes and we were able to express loads of colostrum just in case something happened and they could feed the bub colostrum after the birth if needed. Luckily the midwife was very supportive, even enthusiastic that I asked and gave us a hand. I've seen bubs been given sugar water before and things like that, so we decided to be one step ahead and have something ready. Might be something you could organise too should it need to go down the path of c/s

[Sally2]

Often babies can be successfully bottle fed in NICU/SC and gradually move to exclusive breastfeeding as their health/energy levels pick up. As much skin to skin as you can helps, if possible, hold her on your breasts while she is getting a naso gastric tube feed so she associates the smell & sensation of your breasts with getting a full tummy.
The nurses at Mercy were FANTASTIC with encouraging breast feeding and exclusive EBM, it's soo much better for babies, particularly sick and vulnerable kids. Our son had exclusive EBM during his 11 weeks in hospital, even though his Tummy Mummy had lots of problems with supply due to his being so prem, mastitis etc but he learnt to breast feed before he went home. Unfortunately, he just didn't have the stamina to keep up with it once we got home, he was still so small and after a long, agonising few weeks, we made the decision to put him on formula. The first three months for him having that breast milk though made such a huge difference.
Good luck with your NICU journey, sending you lots of breast feeding vibes!

[Spring Angel]

Flowerchild did an amazing job expressing and then BF her DD who was born at about 27 weeks I think. Hopefully she will pop in.

I also had a friend who's DS was born premie and didn't have the suck reflex at all. It took three weeks of expressing and he eventually managed to latch on and continue to feed for months.

Sorry I don't have any first hand advice, just wanted to give you some postive stories.

Spring xx

Oh about the expressing, I know that it is sometimes recommended for women with GD so I think it sounds like a really good idea if it works for you.

[aussienic]

My 2nd son spent 16 days in SCN, after he was born. He was tube fed for over a week. I went straight to Bf when we got home. At 7 weeks however due to the meds he was on I went to expressing and expressed for 10 months..

I think if you relax and keep a check on your stress levels (hard I know) I think you will be fine. I had never expressed before but had tonnes of milk. It was like my body knew my baby needed that milk and was determined to give it

Good Luck. I hope everything goes smoothly for you

oh and another poster said. Express some milk before bub is born for those first couple feeds. I did that with my 4th child and it made a huge difference. She was born with very low blood sugars (due to me having GD) I only expressed a few mls of BM but it helped all the same

[LucaJack'sMum]

Both my DS' were in SCN for about a week, I expressed and INSISTED that I come down and feed when I could (not always possible as we could not always touch or hold them) BUT when we could I insisted that I was called and the they were not fed formula if EBM was there... they did have to be bottle fed sometimes but you gotta try as hard as you can to establish a good breastfeeding pattern if for no other reason than to bring your milk on

Good luck! xxxx

[*Beema*]

DD I am sorry that you are travelling a difficult journey once again, you are a strong woman and I hope that with all of your research and preparation that you will be able to achieve a beautiful feeding relationship with your DD.

Some of the recommendations above are brilliant, expressing from 36 weeks or so is a great idea, every ml will count. With the feeding these are the things that I found worked for us. Our SCn journey was only 11 days, but we took DD home on a 40gram loss and she didn't gain weight until she was 23 days, so it was a very stressful time, but it can be done.

Inititally we were only allowed to have one BF attempt a day, DD was still recovering from extremely low BLS and was a 33 weeker so not a lot of energy. I took it as an opportunity to get some lovely skin to skin, she didn't really suck, more as played, but she was able to smell and find the BBS.

We did NGT feed with her skin to skin when we could, even place her near the breast and feeding through the tube at the same time. We only used a dummy when we were doing the NGT feeds, so that she learnt to associate sucking with getting a full tummy.

I did use a bottle a couple of times for top ups or if I couldn't get her to feed from the breast (while still in hospital as I boarded with DD), but it was after breast, so she had less energy left but had already "worked" for her milk.

We had to intorduce some formula top ups at 10 weeks as DD started losing weight and was already 1kg below the bottom of the chart, so we didn't have room to move as such. But we always offered breast before bottle, and we still managed to achieve exclusively breast feeding/ebm at about 6 1/2 months.

I expressed until 6 months before having a short break (sanity break from the pump ) and then began again for feeds while I was at work.

I am not going to say it was easy, and yes there were times I wanted to give up, but in the end it was work every second, and every drop of EBM or BF she received was worth it.

If you want to PM me I am more than happy to chat on Messenger or something like that

Take care
xxoo

[Ellee05]

Sorry to hear that the road is not smooth for you, but wonderful that you're able to be prepared and are seeing a LC. DD spent 9days in NSCN, being my first bub and no warning that she was going to make an early entrance I wasn't educated or prepared. The others have given some great advice and ideas. As already mentioned, skin to skin contact is great if you can have it. Another thing my sister read was to put some EBM on a cotton bud/ball or something and put it near nose so bubs got used to the smell. We also took a dummy in and requested that bubs try to suck only when having NGT to associate sucking for a full tummy. We did have a lot of formula as my milk took about 4 days to come in. But during this time we would hand express and later express with pump inline with her feed times and gave it to her first at the next feed.

It was also suggested to me that when I express to have a photo of bubs to look at, not sure if it helped my supply or not. The NSCN had pumps there so could sit and watch bubs and pump at same time.

I'm by far an expert and you probably already know all of this, hope that everything goes as smooth as it possibly can.

Oh, I wonder if the lactaction cookies could help with your supply if you're going to express from 36wks? Just a thought.

[Ellee05]

Oh dear, I just realised I said "I'm by far an expert" so sorry, I ment I'm so far from being an expert as in I don't know much.

[Barb Glare]

Hi,

I found your story of breastfeeding your first baby really inspirational - you did a fabulous job. It must be very stressful for you contimplating this little one's birth. He will so badly need your milk. But the good news is, you will be able to provide it for him. I think, first of all, you will want a long and honest talk with your caregivers about how important it is that your baby breastfeeds, and what support they can give you. Skin to skin, early expressing are a start. If she could remain with you for 48hours that would be fabulous. The simple question "why" is a good way to slice through what may be just unhelpful hospital convention and what is medical need.
If your baby can't feed at the breast, you might want to start hand expressing every 2-3 hours (remember you will get colostrum in the first days - just small amounts) Then by day 3 start pumping with an electric breastpump. You may like to hire one through ABA prior to your baby being born, so you know you have the right equipment on hand.
One issue with babies with a heart problem is that they have difficulty growing. They use a lot of energy. It's worth being prepared for this. Many mothers are pressured to into giving formula because of this. Your breastmilk will protect your baby from infection - and this is vital where there is a heart condition.
If you can express from 36 weeks I don't think this can do any harm. Get some 5ml syringes with caps from the hospital or chemist. This way, if he needs anything else it can be your milk
Let us know how you go - we will be thinking of you.

[DaintreeDream]

Thankyou all so much for your comments and suggestions.

I think that I will definatly start expressing by hand at 36 weeks. I think that it should be successful as I already have 'something' in there when I express a little by hand, it just isn't quiet so rich as colostrum is just yet.

With my DD1 I was not aware that she was going to be going straight to NICU or that she would not be able to BF so I was not prepared and did not express until 24 hours after her birth, I had more than enough colostrum and my milk came in on day 3, I had a massive oversupply so this is not really a concern of mine. I also have my breastpump and bottle ready and waiting along with alot more knowledge on expressing and supply than I did last time .

When my DD1 was in hospital we were encouraged to use a dummy when she was getting her NGT feeds, which we did, in her case it didn't help but her complications had alot to do with her mouth/jaw so a very different case.
Is there a particular dummy that is 'closer to breast' than the others? I just used the cheap cherry ones for my DD.

With my DD I used to use a cotton ball/tips to clean her lips and also to give her the taste of EBM, sounds like something I should do again.

I know that the hospital that she is being transferred to are very pro-breastfeeding so I think this will help.

I guess my aim is as much skin-to-skin as possible (especially when being NGT fed) and as long as baby is able, to offer breast at each feed before topping up with her NGT.

Do you think it will matter if initally I am not able to offer breast overnight (whilst in hospital.
They do offer a medihotel to stay in with baby before going home, you take baby in each day for weighing to ensure they are maintaining/gaining weight, I think this may help with establishing those night feeds.

I will also call ABA, those booklets sound great MR.

So much to think about.

Thankyou again.

[MantaRay]

Feeding overnight is ideal, but if you are not able to, expressing at least once during the night will help. Best of luck hun.

[*Beema*]

You are doing all the right things and are going to be so much more prepared, knowledge is gold in this situation.

We used a prem dummy, which was a cherry shape, but a very small one, DD could never hold on to the cherry dummy, we used to hold it and try to encourage her to suck, we ended up using a Nuk dummy when she was 9 weeks old. Maybe have access to a couple of shapes to see if she is able to suck on one better than another. I don't know if there is one that is closer to the breast....

Also make sure that you have signage for her isolette or cot to say that she is only to have a dummy when being NGT fed, that will help in avoiding confusion and someone just popping it in her mouth if she seems a little unsettled. As the sucking takes a lot of effort and best to save the effort for feeding times

The medi hotel will help in establishing the BF'ing, at first if you can BF for those overnight feeds, even just going down for her OB's etc will make a difference, she will associate your smell with feeding times as well. Also getting sleep inbetween these times is very important for your supply, so don't feel bad if you get up to express and don't make it down to one of the feeds in the middle of the night.

Take care, will be thinking of you
xxoo

[Jennifer13]

Hi DD

The girls have given you plenty of good advice here, I just wanted to pop in and wish you all the best. With all of your great preparation, I'm sure you'll be able to give her your bm.

You're a very special Mummy to have such special girls!

[Inanna]

Daintree Dreaming: I am sorry that you are facing this again - but I am glad you have time to educate yourself and access the support you need.

My last child was born severely prem at 27+5 weeks. She was 815grams and was in hospital for 14 weeks. So, I know some of how hard it is - but how possible it is also to establish breastfeeding...

So, most tertiary hospitals if not all will be quite strident that breast milk is essential for babies in NICU. Many women I encountered found them to be too aggressive in their approach and dedication to breast is best - I personally found it comforting!

I had a c/section and was in intensive care post operatively & expressing was not at all important right then. I first expressed 24 hours post birth & for the next few days got about 2 mls of colostrum. It was devastating for me as I wasn't able to see my baby as I was too ill so all I had was this photo of a pathetic tiny dot with tubes all over her. Looking at that photo was supposed to make me produce more milk - it only served to dissolve me to tears! I pushed on though and I got a friend to come with some of her expressed milk which I put into specimen containers with my name on them! Then with the pressure off my milk came in. It all worked after that. I expressed every 2 hours for 24 hours for the next 14 weeks.

I had no skin to skin contact for 10 days post birth - anbd then it was not frequent as Imogen was so fragile. I was also so afraid she would catch something from me and I would "kill" her...

YOU are in a better position. I would advise you to get a lactation consultant that you gel with.
Express from about 34 weeks and freeze every golden drop
hold your baby whenever possible.
organise care for your other child so you canb be with your new baby as much as possible. It is helpful to establishing supply by doing this.

Know that you are going to get through this. Know that you have many of us here to support you.

Know that you will be scared at times. This is so normal. I spent my life for thsoe 14 weeks in a perpetual state of terror alternating with sheer joy.

It is so hard. But you will get through this and so will she. Statistically girls are stronger and have better mortality rates. Take that comfort and trust her and you.

Sending you all of my love and support honey. If you need any other info please let me know...

[Rommy'sMummy]

HI Dintree Dreaming,

Our DS1 also has congenital heart disease; with a long hospital history, NICU and PICU stays, multiple heart operations, long term NGT, low birth weight etc etc...

One thing I would add to all the other great suggestions and your own very informed and great plan already is a "heart pillow". These are little fabric cushion pillows/shapes that my sister made up for me. They go in your bra - in your cleavage and you have a few of them so that you can always have one in your bra, a couple in the wash, and one in the cot with bubs. The thought is that your milk smell and personal smell is transfered to the cloth and then you give that one to the baby to have near their head (also great for cushioning any lines or wires they need near their skin) so they always have your smell with you. You just rotate them through the bra, baby and wash cycle. It helped me to know that Rommy always had my smell with him.

I stayed in Hospt for 8 days post birth with DS1 and sometimes went down in the night but mainly missed the overnight feeds and just was there from 6am-11pm. Then we had to go home which was over an hour away - I freaked out and the social worker found us parent accommodation in the hospital. You could enquire about this just so you have somewhere to stay if you need and have a place to nap in the day if you can. I realise it is different when you have a previous child to look after too.

I am very happy to answer any other qu you might have regarding having a child with CHD.