So we begin our NICU journey....

As many of you know, our DD arrived very unexpectedly last week at 25 weeks + 6 days. I don't have a lot of time or energy to post right now but I wanted to pop in and introduce myself....obviously this is going to be a long journey.

It will be nice to share with all you experienced NICU / Prem mums....for our own reasons we have not announced her arrival too widely as yet, just to our parents & siblings and a few close friends. Right now, she is just too precious and we don't feel like sharing too much right now. So to have an outlet here on BB to come to will be great for me I think. I'm still processing it all.

DD is still going from strength to strength. She is maintaining most of her breathing herself and is doing all the right things. Of course they are adjusting her fluids, lipids and other things regularly and monitoring her very closely but she is looking great for such a tiny bub. She is active and wriggly and loves pulling off all her wires...cheeky little girl.

Today I got to change her nappy and help clean her face. Plus give her another feed of EBM which has been so important for me to do.

No doubt I'll be back in to ask A LOT of questions, vent & cry a bit, and also celebrate her milestones.

xx

I for one am happy to "listen" to yours and her story!!
I hope she continues gaining strength. She seems like a little fighter. I can't offer any adivce on premmies but am happy to give cyber hugs anytime :)

Sounds like she is doing well hun. :hug:

:hug: Infinity - she sounds like she's doing well. My DS wasn't prem, but he was a NICU boy, so I know the routine and I know it's tough to leave your bub there. Congratulations on the birth of your beautiful DD :)

she seems like a little fighter already... amazing she's doing so much of her breathing on her own.
lots of love and hugs to you, make sure you look after yourself in this emotional time xo

So glad you started this thread. I have been thinking of you guys a lot and really want to follow how you're going.

More love and hugs.

Hun, I've said it before - if there is anything I can do, even if its in months and months time - catch up for a coffee with the kids - if you want to chat about anything - I'm here for you.

I've also ridden the NICU rollercoaster too - there are ups and downs. But don't forget to look after yourself in the meantime hun ;-)

We be following your journey hun, so proud of how your little girl is doing, and take your time sharing your news, here for you anytime and I look forward to celebrating every little milestone, because even the smallest milestones are HUGE in the premmie world :hug:
Take care xxoo

Hi Infinity, I wrote in your BA thread to not forget about you... make sure you have snacks, bottle of water etc in a bag - I found this really handy as often I would just be about to go get something to eat and DD would stir or a monitor would go off and I wouldn't want to go anywhere and those snacks held me over!

My DD was born at 34w1d and she was in for 2 weeks. I know that your and your DDs journey will be longer than that but I am happy to support anyway I can.

Are you still admitted to hospital, being discharged myself was one of the hardest moments for me :hug:

Hi Infinity - congratulations on the birth of your daughter. I had a micro prem (27+5) & Imogen was 815grams. So a little bigger than your little one. You are right this will be a long journey & nothing anyone will tell you will prepare you for the length & rollercoaster of NICU. It is both Heaven and Hell & everything in between. I am so glad you are in here and reaching out - so important. I also am so happy to hear your little one is having ebm - I know how wonderful it is to feel like you are doing something active to Mother your little one. For me I felt that Immy was the "property" of the hospital & my milk was her link to me.

I want to tell you just how amazingly your baby is doing to be breathing unassisted - that is wonderful. It took Immy 10 weeks before she was so your little girl is going great guns! :cheer:

If you want to talk at anytime you pm me and I will give you my mobile #. If you were in Qld I would visit - I know how important someone who "gets" it is. Reach out to the social work staff, utilise the lactation consultant and pump the staff for any and all info. Be fully informed about your baby. Put your hands on her whenever you can - just filling her little body with your energy to help her through. Talk to her. Play her music. Also remembe she is still gestating! Look after you. Get a massage, lots of cuddles from your partner/friends/family is very very important.

Sending you courage, strength & support as you travel this road. :hug:

thats just brought tears to my eyes i remember the first time i got to hold chakotay or change him such a special moment. What a trooper hey :) I totally understand why you have not told everyone.

:hug: I have no advice, but I am so proud of you and your little girl! :comfort:

Not sure what hospital you are in - but when I had DD at 31 wks the WCH had a 'wookie' system, where DD and I would have a piece of material each which had a sphere at the top (like a head) and a material hat was sewn into it (if you can imagine casper the ghost in bright flowery colours wearing a floopy wizards hat we are on the same page). I had one wookie and DD had the other, and at each visit I would swap them so we could get used to each others smell. I had my wookie stuff down my bra ALL the time lol....and it just made me feel closer to DD when I sadly couldnt be by her side. Once I thought I lost my wookie and I was in hysterics - but phew, found it next to my bed.

Thinking of your family during this journey!

leesa i agree good idea i was sick and could not visit my son in nicu so i sent up my nighty for the nurses to make his bed in :) (my dad said to do this) and got them to take pictures for me . It helped alot.

Dear Infinity,

Congratulations on your tiny little bundle arriving safely and for her strong start so far. I saw your birth announcement and you have not left my thoughts. My DD was 29 weeks 6 days and was home in 6weeks 4 days. I shared a NICU room for two weeks with two 27 weekers a little bigger than your DD before moving on to special care.

LIke Leesa I carried around something sort of as a "baby replacement". Mine was a small hand knitted teddy from a friend and I could not sleep without it in my hands. It is really good to have something constant. I would hold it when expressing, and look at my collection of photo's of DD constantly.

I really wish i had written everything down as it is a bit of a blur now, so grab a diary and start writing down how many mls of EBM she is given, weight, when you did nappy changes etc.. You see how her feeds increase and it fills you with hope and purpose that you are part of her care.

We only had family visit for the first week, luckily our friends did not mind as she was too precious to share at first. I could not emotionally cope with others being with me other than DH and my family at first. It was like an intrusion in to our fragile new relationship now that she was out of my womb. I also swallowed my pride and told the social worker asap that I needed to see a counsellor because of past depression and that was so necessary. I saw her weekly for a bit as well as the social worker who i saw every two days or so.

If you do not have one see if you can get a mobile that does internet. I had one in the last two weeks and it was such a relief to be able to connect to the world when I would have a break, email, facebook. I discovered BB after she was home.

I cried at the drop of a hat after the shock wore off. So did the other mum's in my room. My DH did not fully understand. The tears would come mid meal, having a cuppa, talking to someone etc no warning. It is normal.

All the best and you are getting so much love and support from all at BB. Ask any questions, share or just vent. We will be here for you.

xx

Wishing you and your tiny DD all the best for the journey ahead.

Thank you all for your kind words and generous offers of support. No doubt I will be using every one of them.

DP and I went to see our precious girl this morning, and I got to have my first skin-to-skin cuddle with her. I was so emotional when they asked me if I would like to, I couldn't get my top off fast enough! She settled beautifully and we just sat there soaking it all up for almost an hour. She has been so stable they wanted to give us this opportunity now, just in case she has any setbacks and needs to go back onto the ventilator at some stage. So I feel like I'm on cloud nine right now. It was just perfect and she was truly relaxed. How amazing.

She is still going well, they are keeping a close eye on her kidneys & fluids at the moment and constantly adjusting for her needs. She is taking my EBM well, and Deb you are so right, I have been adamant with them that she is only to receive my milk and thankfully my supply has come in nicely so she'll be well stocked in that department.

Now that the larger CPAP machine has been removed we can see her gorgeous tiny face which is a lovely sight. The poor darling is very bruised through the face, particularly her eyes, as they think she was presenting face down for part of my labour (which wasn't a very long one either!) Thankfully I got her out in a hurry.

Shazzi - I completely understand what you mean about the intrusion. DP and I are just not ready to share her with anyone else yet. He and I will be the only ones to see her for some weeks to come, we will let others in when we are all ready. I know it probably sounds a bit funny, I'm still finding it hard to explain that to a few family members - but I'm just focussed on protecting her right now.

Emotionally we are doing fairly well I think. We have DS who needs us too so we are juggling his needs with our own, and obviously everything we can do for DD we will. I'm sure the shock will start to set in over time but we are trying to remain as calm and level-headed about things as we can right now.

Thank you all again for everything xox

i still forget things like his due date and birthday it was so rush rush from our scan to his being born today. It was all so full on for the 18 days we were there.:hug: rest as much as ya can and eat eat eat and drink sweet. Sounds like your in good hands there.

You sounds as if you are coping so well :hug: I'm so pleased that she is doing as well as she is. And massive YAY and WOOHOO for your first kanga cuddle!!!! You made me smile recounting that, I remember so well the first skin to skin I had with DS2, I too couldn't get my top off fast enough :).

Here for you on your journey. I hope it is a smooth one, and that Heidi continues to progress well.

Aaah I also smiled reading about your first kanga cuddle! :hug: :cheer:

I am glad to hear your milk supply is doing well - you are amazing! Good work boobies!!!! I also took the sheet when it was changed from her isolette. Most tertiary hospitals in NICU won't let you put something of yours in there though due to cross infection. So, just a thought and what I did was when they did "cares" I took her sheet and brought it back the next day for my next Immy smell fix! Might help you. xxx

The other thing that helped me (& I like to think Imogen) was I put up positive affirmations over her isolette. I also had Quan Yin (she's special to me) and Mother Mary (my ex husbands Aunt was a nun). They protected her whilst I wasn't there! I also had a photo of her siblings up to watch over her...

All thoughts that you can take and ponder.

Big cuddles to you & special kisses to your special girl. :hug:

The photos are a lovely idea :). We also had toys that DS1 had given DS2 tied to his IV pole. DS1 also drew him a picture that we laminated, and stuck to the isolette :). I think those things helped DS1 as well, I felt he got ripped off too, of that lovely experience that most have of meeting their new sibling.

Don't be afraid to ask for kanga cuddles. You will soon enough get to know the 'routine' of things, but in the meantime, if you're not sure, just ask. Sometimes staff can be really busy, and don't realise that you're waiting to hold your baby (when you get to that point). It sounds as though your milk is coming in well, which is tremendous. Breastmilk is so so important for premmies, especially micro-prems. Those kanga cuddles will help your supply even more :). If you pump soon after, you may be impressed by how much more milk there is!

Do you know yet when you'll be discharged from hospital?

Aaaah we had the toys too Janie... All in plastic bags hanging on iv poles! *trip down memory lane*...

Aww glad to hear things are going well! I got teary reading about your first kangaroo cuddle.

Keep up the good work with expressing, take care.
xoxoxo

Ahhh, so nice to read *sigh*. I hope things just getting more positive for you.
Congratulations on your precious fighting little girl...what a trooper she is.
So nice you already had your first cuddles..this is such a positive premmie story, thankyou for sharing with us :hug:
I look forward to listening to all your updates..these have already bought tears and smiles.
Take care Infinity.
I hope your little man is coping ok too.

Thank you all again. The photos are a lovely idea, it would be great to have her big brother watching over her. I'm unsure if we're allowed to put any keepsakes or toys in her cot, but the nurse did mention to me that if we want to bring an iPod or recorder of some description along with stories that we read or music she might like, they'll happily pop that in with her too.

Janie - I actually discharged myself from hossy about 12 hours after she was born. She arrived in a big hurry and I was up and about fairly quickly, so my recovery has been very swift which has helped a great deal with my state of mind and being able to keep it together. Plus hospital is not a restful place for me - we needed to come home and re-charge.

I'm trying now to stay focussed on being healthy & strong, to get my milk supply on track and to keep our heads' above water. I've already outstripped what she will need in terms of EBM for the next few weeks at least - the tiny little possum is only taking 1ml every 4 hours.

It looks like tomorrow they will remove her arterial lines and insert a central line into her arm or leg which is quite distressing for me, but we'll see how the day goes. She is teaching us so much already about strength and fighting, we need to take her lead.

Goodnight all xx

Congratulations of the arrival of your darling girl.
Sending you guys all the strength needed for the coming months.

:

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Aaaah we had the toys too Janie... All in plastic bags hanging on iv poles! *trip down memory lane*...

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I remember the toys around the humidicrib, the blankets that used to be on placed over it to stop the light coming thru, sterilising the hands upon walking into the NICU / SCBU (everytime I smell that stuff it reminds me of those times....The top to toe baths, and by gosh I was good at changing a nappy while DD was in the humidicrib...

Most of all I remember the kindness of the nurses :-)

Another NICU mum here wanting to extend her arms and give you a huge hug.
Remember to drink plenty of water...hospitals dehydrate you so much and you need all the strength to get your supply continuing.
:comfort: hon....we're all here behind you

Well done on the fabulous milk production! I hope you get lots more kanga cuddles.

I'm glad you're in a place where you feel comfortable, and able to rest and recharge. Good on your for being so determined to keep going with the pumping - it's amazing that they need so little to start with (although my DS was bigger and having more, 10mls every 4 hours) but soon enough you find that their need increases, and the milk starts disappearing from the fridge and freezer so much faster! Which is why it's so important to establish a good milk supply at the start, so it's there for them when they're bigger. Do you have any literature about breastfeeding prems? If you don't have the ABA booklet 'Breastfeeding Your Premature Baby' I'd love to organise to send you a copy. My DH found it a really helpful thing to read too. If you don't have it, swing me a quick PM with your address and I'll get a copy off to you.

You're doing so well by the sounds of it, just hang in there, and keep doing what feels right for you :hug:

Janie, you're a sweetheart. I've been meaning to track down a copy of the ABA prem booklet but haven't got my head on straight yet! I will PM you, thank you so much. I don't have the words. The nurses suggested that for the first few days I don't get myself up at night to pump to try and rest a bit which was very kind of them, but now that I've had a few good nights sleep to re-charge, I'll be getting up to pump at least once overnight. I'm so determined to keep my supply strong, I don't want it dwindling.

DD is still doing really well. She will have some big changes today though with her central line so one step at a time.

Thank you all again for your generous support xx

Wishing your DD well with her big changes today. Looking forward to hearing more about her progress!

You're more than welcome hun. The midwives said the same thing to me...........it is very important to recover, but night time pumping is crucial to establishing a good supply. I know as well as anyone that dragging yourself out of bed to sit with a bit of plastic is horrible, and very difficult. I never would have thought it could be so difficult. But it is so so important. Even if you can keep the pump next to your bed so you don't actually have to get up. I know it seems a very long time away, but sometime in the future you're going to bring this little girl home, and she's going to want to feed in the night ;). Do you have a double pump? It makes a huge difference to you if you can double pump. Can I ask, were you able to breastfeed your son?

Speaking of, how is your DS going so far? And your DH?

ETA Sorry for the million questions. Feel free to answer, or not, in your own time :hug:

Thanks Janie for your kind words & support. Heidi is still going really well, nice & stable and doing all the right things. Still has minimal breathing assistance, but she's the most amazing little girl. She's the tiniest one in the NICU but is the most settled and calm which is lovely to see. They weren't able to get a central line in yesterday so they'll be trying again today, probably as we speak. She had an ECG just to check her heart this morning which was all perfect and she is having head scans every 2-3 days to monitor things in her brain. So far so good. Her jaundice and bruising is all resolving nicely too so her pretty little face is getting even more beautiful every time we see her.

As for the expressing, I'm doing the best I can right now. I am sensing my supply starting to dwindle a little bit, but trying not to stress too much about it. I'm just trying to pump more often and during the night. I have purchased an electric pump which should arrive tomorrow hopefully, I've been using my trusty manual pump that I had when DS was born so hopefully that will make a big difference. I've been making the most of the pumps in the NICU when we're visiting too. Breastfeeding DS was an absolute disaster - really long story. I had a great supply, he just managed to rip me to shreds early on and I never recovered. I had a series of infections, one after the other and I got very unwell. We managed to express and feed EBM for 6 weeks then I was just too weak and had to make a decision that I never wanted too and still struggle with every day. So my milk for Heid is so important on so many levels.

DP and DS are doing well. We're all tired and drained but coping ok looking after each other. DS is kind of a bit little to really understand what is happening as yet. He's just spending a bit of extra time with his Nanna's which he loves. But he does know something is up. We took him in for a quick visit this morning and he was more fascinated by the blue lights Heidi was under rather than her! It won't take long and he'll get it though, he's a smart little cookie. DP is being my rock right now. He is still stunned that he has a baby girl and she is alive and doing so well - we both are. He misses her terribly and feels a bit helpless but is supporting me in every way I need.

Hi Gorgeous,

Have been thinking of you, and glad to hear things are going ok. Great work with the expressing, your milk will be helping your little girl grow big and strong.

take care,

Kate

Aww hun you are doing a truely amazing job :hug:

It is such a spin when your world is turned upside down when your little girl arrived so quickly and all in such of a hurry.
I found that I went through the "baby blues" as such a few times, and it is really important to have those times to yourself to have a cry and let it all out.

If you are worried about your supply maybe looks at ways to boost your supply, as you will be short on time I wouldn't worry about the Lactation cookies atm, unless Nanna cane make some up for you, but you can go for Fenugreek, Blessed Thistle, Milo and Aktavite are also great boosters and will also give you some energy, along with drinking lots of water. I went onto Motilium as it is hard work expressing all the time, I completely understand that part of what you are going through, because my DD wasn't anywhere near as early as Miss Heidi, but the getting up all hours of the night to hook up to the pump can be very tiring, I had alarms on my mobile phone to wake me up to express, a double electric pump is most certainly the way to go, it is a lot quicker and easier, you will really notice the difference.

I know it is hard, but for now don't worry about the amounts you are getting with each express, you will be easily covering what Heidi needs, just keep goin every 2-3 hours during the day for 20min or so and at night try not to go more than 5 hours between expressing sessions, and at most one large gap between. I know it is going to be hard work and I really wish I had the wealth of information that I have gathered from BB and the ABA when I was going through it all.

I hope things went smoothly with her central line today, and if it didn't happen it will in time, she is doing very well, and such a clever little girl to be doing so much breathing on her own, the girls are always stronger in NICU, they are just that bit further developed than the boys ;)

One thing that might help DS is a few pictures of the NICU, ie entry doors, washing hands, Heidi's crib etc, so that he can look at them and you can sort of tell a story as you show him the photos, a bit like reading a book, that way he can become more familiar with the NICU, without it being all new with each visit.

Definitely the photos etc laminated and put on her isolette are a lovely idea, we have all of DD's and they are also a lovely keepsake. She also had a Panda given to her by DH he search the city for 4 hours finding the right one, and the Panda is symbolic of goodluck on the birth of a new baby and he was her protector, it was nice to know that he was always there watching her :)

Take care hun and I have you in my thoughts daily :comfort: xxoo

Hello *Infinity*

So glad you have joined us all here.

It was wonderful to read that little Heidi is doing so well :dance: breathing with minimal assistance at her gestation is amazing! She has already overcome one of the major hurdles on the NICU journey & to receive an excellent ECG result, I know, is such a huge weight off your shoulders.

I cried when I read that you had your first kangaroo cuddles. Such a special moment for so soon after her birth and it is so important for your milk production and her development. It was 18 days before DS was aloud out for our first kangaroo cuddle. It felt like a lifetime.

Expressing can be difficult task sometimes. If you feel that your supply is beginning to decrease, try to increase your fluid intake of both water & milk. If you're not a milk drinker, try adding aktavite to it (so called old wives tale). If you find you are really struggling, your GP can prescribe something to increase your supply. It was something that I really didn't want to do but it was more important for me to be able to supply DS with as much EBM as possible and for as long as possible.

Hoping the NICU journey for you, your family and your beautiful girl is a smooth one. Sending lots of healthy and growing vibes her way. Remember, staying positive is a very good thing but it is also ok to have a cry.

Take care xx

Just wanted to pop in and say what an amazing little girl you've got there, and wish you all the best for the months ahead. Sounds like she is one tough little cookie. You are doing a great job of staying positive. Keep coming back to keep us updated on Heidi's progress and to let us know how you're doing too. :hug:

Glad to hear Heidi is doing so well. Take care of yourself and DP as well, it must be tiring having to manage DS, who's still only little himself, and the trip to the hospital every day. :hug:

oohh yeah i was also going to second the "aktavite' choccy drink to help with milk supply...i also found keeping on my multivits and plenty of water really helped...

Congratulations on your little girl!!:loveshower:

I'm a mummy to a ex 25 weeker and was in NICU/SCN for 153 days so I know what a long tiring road you have ahead of you. Please if you need any support or want to ask anything, I am very happy to help out.

Shazz.