So we begin our NICU journey....

Hi infinity,

I just wanna say i think you as a person are one of the most admirable people i can think of and also a super tremendous mum... i just finished reading your posts and i think your lil girl would be sooooo proud of her mummy and daddy with everything you are enduring with her and for her.. your son is also a very lucky lil man to have a mum with what she is going through still holding it together for him as well..

My friend went through a very similar situation at 25 weeks also and it was very very very upsetting too experience and i was only a bystander and a shoulder too cry on but i felt like he was my own... his now a gorgeous 18 month old and although still is facing many obstacles he is a true inspiration as im almost certain your daughter is and still is going too become..

I wish nothing but good thoughts and good vibes your and your whole families way you are most deserving of it..
And as for lil heidi i wish the biggest and foremost healthiest vibe for her.... she is amazing and very very strong she is truely a lesson in love and life..

Goodluck with the fututre and your precious gift .....

What a little fighter your precious Heidi is!! I had tears rolling down my cheeks reading about Heidi opening her eyes to daddy's voice and grasping his fingers, just amazing!!!

Keep growing stronger and stronger precious Heidi. Keeping you all in our thoughts and prayers.

Ah honey, opening her eyes and holding Daddy's finger, what a precious moment for him to share with his DD.

If you put any of the photos up on your gallery, let us know. They sound like a wonderful boost at such a tricky time. :hug:

Hope you are all better by Tuesday and no doubt you'll be busting to get down to see her!

This is great to hear, little Heidi has been in my thoughts all day so wonderful to hear she is looking at Daddy. Hopefully she is well and truly on the mend now. Infinity how beautiful that you have some lovely photos and video of her... hope that they help you get through until you can see her again.

I have been reading your posts and have had little Heidi in my thoughts and prayers.

Hope you are on the mend quickly.
Hugs to you all

:hug: :hug:

Been thinking of you and little Miss Heidi as usual :)
I am glad to hear of some very special little steps forward, opening her eyes awwwwww, we like the small one's, they make a big difference.
It is wonderful to hear that you have received the photos and that they have turned out beautifully, and their timing was impecible.

Sending you some strong get well vibes as well, but it is definitely worth the wait until you are much better before popping in, and the videos must have helped a little bit, it has brough back memories for me that when DD was born and taken to NICU, DH went down with the video and digital camers and bought them both back to me to watch, and it really does make a difference when you can't be there with them.

Take care and sending strength, courage and a bucket load of love to your and your family xxoo

Wow, Infinity, that's awesome about DH and Heidi. Just gorgeous.

Keep doing well, Heidi. Thinking of you all.

What an amazing little girl you have there Infinity!
So nice for DH to get a really special daddy moment too, that is beautiful.
Hope you are feeling better soon and can get in to see Heidi soon..

Evening all

DP is down at the hossy with Heidi as I type. He went down this morning to talk to the doctors and get an update - they decided to remove one of her central lines (the one in her scalp) as it was contributing to the fluid she was retaining around her neck. They're unsure if they'll try and get another line in tomorrow. She is showing small signs of improvement day by day, bit by bit which is all we can ask for. The doctors are happy that she has passed the worst stage but still cautious obviously. She is getting a bit more active and responsive each time DP is with her.

I miss her so terribly. I'm having a very fragile day today. I was planning on heading down to be with her in the morning but I just don't think I can do it on my own. DP is working tomorrow so I've decided that I will wait until Wednesday morning when we can go together and I can hold his hand. I feel like I'm going to fall to pieces. I had a great couple of weeks getting settled in a nice routine, visiting her independently and getting on with things. Keeping the basics done at home. Everything seems to be a bit more shaky this week somehow.

I had my follow up appt with the obstetric team this morning and they have concluded that an infection developing in the placenta triggered premature labour and DDs early arrival. They obviously keep the placenta growing (somehow?) and it has show signs of a few generic bacteria starting to grow, some sites of inflammation and increased white blood cells, which indicates infection. They said we could speculate until the cows come home about how the infection started but we'll never know. It could have been anything. Basically DD and my body knew that she needed to come out.

So that news has probably contributed to how I'm feeling today. Even though I know that I couldn't have done anything differently, I still feel so sad that I couldn't keep her safe in my tummy. I'm still greiving the last 15 weeks of my pregnancy in many ways - I actually love being pregnant and I'm sad that I'm going to miss out on those last few months with a big round growing belly, feeling her kick away inside of me. I look at DS and wonder why I couldn't grow a big healthy full term bubba this time around. Silly questions I know - I'm still processing it all in many ways. This whole experience has just shaken me to my core. There are going to be ripples for me for a long long time.

Thank you all for the positive energy you are sending her way, it is so very generous & kind.

:hug:
It must be a lot for you to process - no doubt it'll take a long time to work it all out. For what it's worth, you did keep her safe by getting her out early, but I'm sorry it had to happen that way. And I'm sorry you missed out on those weeks.
It's brilliant news that she's improving bit by bit. I think a little TLC for you is in order right now :hug: so you're ready to go back to your little one on Wednesday. Take care

That is such good news bout your bubba and i hope you feel better very soon

:hug:
Glad Heidi is doing better and so sad that this is a bad week for you. It's always harder when you aren't there with them, as it feels like something you CAN do for them in the hospital to try to make up for feeling like you've failed them by not keeping them safe. It's a terrible, irrational guilt that I know Sal carries with her for not keeping our boys in her belly longer. It's not your fault, you body did the best thing for her and got her out so she wouldn't get sick from the infection. It's a crazy, hard thing you are being asked to do, you miss out on so much, the big round belly and all the attention that comes with being that pregnant. You have a new baby, yet when you go out, she's not with you. It's a terribly hard thing to deal with, give yourself time to grieve the lost weeks of your pregnancy, it is a loss even though Heidi is still with you, you have had so much taken away that so many people can't imagine.

You are doing the best job as her Mum as you can do, staying away at the moment is protecting her and just keep remembering that you will take her home and she will be your little baby girl at home with you making up your family of four where she belongs. I am amazed at your strength at every post, Heidi is such a lucky little girl to have two parents who love her as much as you do. Keep going Mum, you can do this!

Wonderful to hear that Heidi is showing continual signs of improvement and that your DP is able to share some very special moments with her.

Infinity, I cried reading the rest of your post as I could have written the exact same myself 15 months ago. Believe me, Heidi knows her mum and when she feels your touch and hears your voice again, her response will be magical and heart warming and everything will slowly begin to fall into place once again.

Even though Heidi came into this world early, you need to look at the wonderful job you did baking her for those 25+ weeks and that you now have the privilege to watch her grow on the outside. I still grieve for my lost 15 weeks and I cringe when I hear women in their last trimester wish their pregnancy away but there is nothing you could have done and like you said, your body knew exactly what to do.

Sending you lots of :hug: and strength for the next few days. Strength and growing vibes to Heidi and keeping you all in my thoughts & prayers.

big hugs gorgeous mama :hug:

It's been a really massive week for you, especially with you being away from your little girl. i too would soo need my DH to hold my hand...you all need lots and lots of cuddles too xx

:hug: to you Infinity. I hope the time races by until tomorrow morning, when you and DH go and visit little Heidi.

:hug: honey be gentle with yourself. There was nothing you could have done. Good to hear she is making progress. You'll be with her soon, so rest and take care of yourself in the meantime.

:hug:

You did an amazing job hun, it is hard to accept that our bodies for one reason or another just couldn't make it to term, you kept her safe and grew her to a beautiful size in the 25 weeks 6 days you baked her for, and I know that she will be eternally grateful to you for that, you have given her life :comfort:

Progress is good, and we do like the small steps, she is a real little fighter and she isn't going to let an infection get in her way.

I am glad that you are going in with your DH tomorrow, to hold each other up, I hope you have a lovely long visit and get to see those beautiful little eyes open and her tiny fingers grasp yours.
Take care and don't worry about anything more than the basics xxoo

Hope the 3 of you enjoy your visit tomorrow.

xx

:hug: For today. Hope you enjoy some wonderful moments together.

I hope all went well on Wednesday and you have been spending lots of time with your precious little girl :hug:

Strong Healthy vibes coming your way for all of you xxoo

Thinking of you honey and hoping Heidi is doing well.

I'm always reading about Heidi's new milestones but haven't posted. Take care of yourself first so that you can be there for Heidi and your son. If it means taking that extra day/days to make sure you are healthy then so be it and it will ease your mind. Having said that I'm sending all the love and healing thoughts I have your way. Best wishes for your family

Thank you for checking in on us & your supportive words. I've been floating around reading & not posting - I just haven't had the energy to write what has been going on for Heidi these last few days. I don't really know where to start to be honest, its just one thing after the next for the poor little chicken.

We went in Wednesday hoping that things were looking up, and tummy wise, it looks like she's recovering from the infection. But as many of you who have travelled this road before would understand, as these tiny little bubs get treated it usually results in one step forward, a few backward and a couple off sideways in a completely different direction. Wednesday morning we arrived and they advised us they were going to re-tape her ventilation tube. Usually a fairly simple & straighforward thing, but the docs discovered that the tube had actually moved too far into her little lung and was in the incorrect position. DD didnt tolerate them re-positioning it, she had a fairly major episode which appears to have contributed to a small pulmonary haemmorhage (bleed on her lung). That same day she had to have her eyes tested to check for any deterioration of the blood vessels (routine check they do) but its not a pleasant procedure for them and it was just coincidence that it happened the same day. So she was put through the ringer big time, it was a very hard day for all of us.

She's had very little luck with the central lines & IVs they've put in - they either can't get them in the right position or they start to puff up at the insertion site. Wednesday they removed an IV for the same reason and Thursday they had to remove a poorly positioned central line and insert a new one in the other side of her scalp. Thankfully they've got it into a great position and fingers crossed it lasts her through all this treatment and won't have to be removed. It means they've shaved both sides of her beautiful little fuzzy hair though, which is so hard. Minor in the scheme of things I know, but hard. Overnight on Thurs she went downhill again and the ventilation tube had moved AGAIN which meant it had to be re-positioned but she tolerated it a bit better this time. It was at that point they x-rayed her chest as they were a bit perplexed and the bleed on her lung became apparent. It may also be partially related to a small opening in one of the heart ducts which is too tiny to warrant treatment but there all the same. They say that her lung will heal over time, but its not ideal when her lungs are already under so much stress and strain already.

She's had a fairly restful & settled weekend though which has been a relief after a few days of trauma. She very much needed a break and some time to keep recovering and just to be left alone for a while. Tomorrow and the next few days will see more tests and a decision about how to proceed from here with her ventilation etc. From a tummy point of view the docs are fairly happy that she is past the worst from the NEC infection but they do suspect she has a blockage in her bowel somewhere. Its day 14 of her ABs & nil by mouth treatment tomorrow and she hasn't moved her bowels so they think something is going on still. They're going to put some dye down and xray to see whether things are moving or not and decide what to do from there. If her lung remains stable they may consider taking her off the ventilator which will be a positive step, but we just don't know how she'll go. I can tell she is so annoyed with the tube and she kicks up a big stink when they try & wean her from the morphine. She gets alert enough to realise what is happening and lets the nurses know that she's not happy. Which is a good sign that she's got some fight in her, but I just hate seeing her so uncomfortable.

So keep her in your thoughts as we get through the next few days. I'm just clinging onto whatever I can hoping that this week brings some positive steps forward for us. I'm all over the shop, I can't concentrate very well right now. People talk and I'm just in la-la land most of the time, trying to listen but not succeeding much at all! I'm struggling to sleep. Even if I do get some light sleep in, I'm constantly aware and thinking about her and what is happening. I'm over the cold/chest infection I had but struggling on so many other fronts, I'm just trying so hard to keep it together for Heidi. I can't plan anything in advance right now, just going hour-by-hour as everything is so changeable. We're up to day 45 now and I just cant even begin to fathom that there might be an end in sight at some point, I'm just feeling very lost & scared right now. I'm scared for my girl and what all this means for her in the long term. I'm still grieving so much and miss her so dearly. Its been over two weeks since we had a cuddle and I just wish I could crawl into her crib and lay next to her beautiful tiny face and tell her how much I love her. And now that I've made myself cry I'm going to tuck myself into bed and see what the rest of the night holds. Good night all I'll update as the week progresses.

Thinking of you, matey. :hug:

:hug: *Infinity*

I hope and pray that little Miss Heidi has a much better week, keeping you all in our thoughts and prayers, be strong little Miss H :comfort: xxoo

Thinking of you this week as you are strong for your tiny girl. :pray: that the drs and nurses caring for her are able to give her the very best of themselves and the treatment available so that she can fight the challenges that are before her. I hope you have some good news to cling to soon.

:hug: to you, hun. This is such a marathon for you too.

Oh honey :hug: :hug: :hug: I have been thinking about your little girl over the weekend, noticed you hadn't been posting and wishing that everything was OK. It sounds like a harrowing week for all of you but there is some good news there - she had a pretty settled weekend, she is showing she is still your little fighter, and hopefully she is over the worst with the NEC. All you can do is what you are doing, take it one day, one hour at a time as you need to. You are doing really well and if you need to curl up in a ball and cry then go for it. All of us here are in your little girl's corner cheering our hearts out for her to make a full recovery and be home with you soon.
:grouphug:

Oh sweetheart my heart is in my mouth with every post I read. It is such an awful rollercoaster. :hug: If you ever need to talk to someone who has been in a similar situation pm me and I will phone you. :hug:

My prayers and positivity are being sent to you every day. :hug:

oh infinity that sounds like such a massive week :hug: and 45 days of hour to hour is long and i can only begin to imagine how tough so big big :hug: to you all xx

sending Heidi all our strength and hope and love for a speedy recovery and onward journey to home xx

What a week :hug: I hope this one is better for you all.
Please don't worry about not posting if you're not up to it. We're all still here for you

Heidi had another bleed on her lung overnight. So we almost go through the weekend with no hiccups, but in the end it was not to be. I talked to the surgeon this morning and they are concerned enough about the blockage in her bowel that we're starting to plan for a scenario if surgery becomes necessary. She had some gastric dye administered this morning and they'll x-ray her at 12 midnight and 12noon tomorrow to see where things are being held up and hopefully shed some more light on what we're dealing with.

Inanna thank you for the offer to chat, I may well take you up on that one of these days. Right now I'm strugging to string more than a sentence together in real life, so I'll definitely PM you when I feel more able. Coming in here at least allows me to blurt things out without any pressure or feeling like I have to answer a barrage of questions. You would think nosy family memebrs would understand that I don't want to regurgitate every last detail and would stop pounding us with questions but apparently not. I know they care, I'm just having trouble staying sane right now.

Oh Infinity, I just read your previous post about Miss H being more settled and relaxed and just saw your most recent post about the bleed on Heidi's lung.

I have a lump in my throat reading each update on the ups and downs you and the family are going through, in addition to what Heidi is going through. I hope the x-ray's shed a bit of light on what is going on. She is such a fighter and I pray daily for her.

I will light that candle again for Heidi this evening in the hope it will 'bring some light' to the Doctors treating your little princess and provide a course of action to get Miss Heidi home.

I can imagine the dark tunnel you are facing at the moment, and I wish there was something I could do to brighten it for you, unfortunately only time may do this. Please do let me know if there is anything I can do. PLEASE!

Keep fighting little Heidi, get better so you can get some Mumma cuddles really soon!

Thinking of you all, what a difficult time, stay strong for your beautiful mama Heidi xxx

Infinity, it is a tough, tough road. I think and pray for you and Heidi often. Heidi seems like such a fighter. 45 days on... she's still here, doing as well as can be expected. Sure there are always bumps in the road... but I hope you will have her home very soon.

Hugs and thinking of you.

Oh sweets, :hug:
Nothing helpful to say here, just thinking of Heidi and you all......

Wanting to send my love and thoughts to you Infinity :hug:
xx

Thinking of you all, and sending my thoughts and prayers. :hug:

Oh darl, thinking of you and your baby girl often, I'm just not on here much these days. PLEASE take Deb up on her offer to chat, it will help you more than your know, she is an angel xoxoxoxo

sending all our love and strength babe :grouphug:

Thinking of you :hug: