So we begin our NICU journey....

***Infinity*** · July 22nd, 2010, 10:07 PM

I second the laptop when expressing, I used to fall asleep infront of the tv and then spill milk

Beema, you made me giggle about spilling milk! I do have moments even during the day where if I close my eyes when I'm pumping I'm sure I am close to nodding off!

Thank you all for the encouragement. This week has been very busy but we're going ok so far. DS has been happy with his Nanna's so I've been able to get to the hospital when I need to and try and keep the home fires burning a bit too.

Heidi is going well. She went up to 925g and will be weighed again tonight so here's hoping for another gain. Its been a rollercoaster though. One day I'm in a good frame of mind and the next will be a day where the slightest thing will start to eat away at me. I think I'm going to end up going slightly nutty, but oh well, who cares LOL.

The doctors are watching DDs lungs quite closely at the moment. She is starting to develop a small degree of what they refer to as chronic lung disease. Sounds a lot worse than it actually is for her (which is one of the things I'm trying to be rational about). Its essentially a diagnostic line in the sand for them - if by day 28 a prem is still needing some degree of oxygen then they classify them as having chronic lung disease. Heidi will be 28 days tomorrow and over the last week she has needed small increases in her oxygen levels, but thankfully not too much. Its kind of expected for a baby born at such an early gestation, but it sounds so awful. Those three words have really thrown me this week. Despite talking it all through with the staff, I still have my worrywart pants on and my anxiety levels are increasing. Most babies grow out of it over the coming months as the lungs continue to develop until kids are 5 or 6 apparently. So as the lungs grow new healthy tissue, it takes the pressure off the tissue that has been damaged as a result of her prematurity and the ventilation etc. So here hoping she doesn't deteriorate any further.

Just to add to the stress, the poor little boy who has been in the cot next to her is VERY sick. He's been hit by some major infections & going by the looks on the nurses faces, I don't actually know if his prognosis is positive at all. They told me today that they'll proactively test the babies that have been in NICU near him (including DD) to watch for any early signs of the same infection. So again, fingers crossed she manages to avoid that. The staff do their best in terms of hand washing and de-bugging but when they share the care of all the babies, there is still a risk of something being transmitted. I actually feel really sad about this little boy - his parents have had him removed from their care and he has no one, and now he's so sick. Breaks my heart.

Earlier in the week I was ready to throw all the monitors out the window - everything goes beep A LOT and all I wanted was a quiet, uninterrupted cuddle with my baby girl - and I was really annoyed and frustrated that its going to be a long time coming. I just try and zone out as much as possible. Today we had a good morning - I washed her and helped change over all here tubes and leads which they replace every 7 days. Did all her nappies and changed her sheets & nest. The more I get in and do for her, the better it makes me feel. Makes me feel more like her mum.

I've also posted her birth story too if you want to head over and have a read. It was nice to write it all down while it was still fresh.

xx

**Arimeh** · July 22nd, 2010, 10:16 PM

Its a great birth story honey - and your little girl is such a fighter. I hope she grows stronger every day.

**Little Chicken** · July 22nd, 2010, 10:17 PM

Earlier in the week I was ready to throw all the monitors out the window - everything goes beep A LOT

I know exactly what you mean. I used to work in a NICU and yes they do get to you after a while, but believe it or not, you will be able to zone them out after a while.

**Rosebud** · July 23rd, 2010, 12:06 AM

It was wonderful to hear about your family photos, would have been one of those very special moments.

Yay to Heidi on the continual weight gain.

Hun, it is a tough journey and yes you do feel as if you are going nuts but try and be gentle on yourself. I found having a NICU buddy helped a lot, sometimes family & friends just didn't understand.

Certain events often resulted in oxygen increase with DS. Things such as increased feeds, eye tests, additional blood tests and immunisation which they do at actual age and not corrected. Fluid retention also plays a big part in it too. Sometime it was also a flag for a well needed blood transfusion. Has Heidi also been spending time in air?

In a few weeks you will become oblivious to those horrid beeping monitors....Oh how your updates are bringing back so many memories.......

Thank you for sharing your birth story with us xx

***Infinity*** · July 23rd, 2010, 03:28 PM

Certain events often resulted in oxygen increase with DS. Things such as increased feeds, eye tests, additional blood tests and immunisation which they do at actual age and not corrected. Fluid retention also plays a big part in it too. Sometime it was also a flag for a well needed blood transfusion. Has Heidi also been spending time in air?

Thanks for your support Rosebud. Heidi was in air for the majority of her first 2-3 weeks which was amazing. Its only been this last week that they've seen her oxygen needs increase, and I do sincerely hope its just due to transient things like increasing her feeds etc. She also wiggles a lot so sometimes her de-saturation is simply due to a bad trace on the oximeter. She is always pink and lively though and they encourage us to look at her, not the monitors. Hard to do when they beep so much.

She stacked on 55 grams over the last 48 hours which is great - she is now 980g in total, so almost pushing the big 1kg milestone! I think I'll throw a party when she hits that one. She is taking 6mls of EBM each hour, still being perfused slowly which she is tolerating a lot better and she is pooing like a trooper now which is a good sign that her gut it kicking in.

I'm tired, got a million things to try and keep on top of, but I'm doing my best to get the important things done and just forget about the rest.

**Amity** · July 23rd, 2010, 03:34 PM

Awww Heidi is doing SO well! Stacking on the weight!

It's such a hard journey, but so very much worth it in the end.

Thinking of you

**Little Chicken** · July 23rd, 2010, 03:39 PM

Heidi sounds like she is doing everything that a baby of her gestation should be doing, which is great! It is unfortunate but normal that she may require oxygen around this time, and that her saturations might start swinging as well. The nursing staff should be only noting the true ones and not all of them as, like you say, some of them will be just purely the monitor not picking up properly. Be assured she will grow out them as well as that oxygen need. Is she still on CPAP or is she breathing completely unassisted now? We used to jokingly tell parents that when they reached a kilo we required a kilo cake.

Put yourself and your family first, everything else can wait. Good luck with everything.

**tk1999** · July 23rd, 2010, 03:41 PM

My first night in the SCN I thought I would be hearing beeps and blips and buzzs from then until the 10th of never... I can't remember when I stopped hearing them but I remember thinking it was awful quiet in the SCN and the family member I had with me said "how can you say it is quite with all that beeping from the machines"

So many memories flooding back for me. I think of you and Heidi often

***Beema*** · July 23rd, 2010, 04:17 PM

980 grams

WOAH!!!!!!

WTG Heidi!!!

It seems that she had just all of a sudden stacked on the weight, just amazing and I am glad that the adjustments to the feeds is really helping

Great post Rosebud, some great information in there

It is hard to forget the machines that constantly beep, freaked me out when N's started going off the first few times, but you do get used to them, but there is still that fear when they do. And the memories flood back every time DD goes back in, and she is generally hooked up to Oximetry most of the time and that goes off a lot....

Take care and sending you strength xxoo

**Jennifer13** · July 23rd, 2010, 08:38 PM

Wow -980 gms!!! And up to 6 mL feeds sounds like so much when you were talking about a mL at a time such a short while ago. Your milk must be really full of all the good stuff.

**Cassius2** · July 23rd, 2010, 09:39 PM

Wow -980 gms!!! And up to 6 mL feeds sounds like so much when you were talking about a mL at a time such a short while ago. Your milk must be really full of all the good stuff.

*snap* that's exactly what i was thinking!

**nickers** · July 23rd, 2010, 10:00 PM

ohh she is going to hit the 1kg by next weigh in hopefully!
I used to fall asleep expressing and wake up with the pump still sucking away lol!
its hard to see any bub fighting, i hope the little boy pulls through and that Heidi does not get anyt infections

***Infinity*** · July 24th, 2010, 03:31 PM

Well the good news is that Heidi was negative for the infection they suspected to be going around - and so was the little boy. Which I am so very relieved about. For her and the little boy. He is still rather sick though it appears.

We shared a lovely long cuddle together this morning, she just snoozed away - it was beautiful. She'll weigh in again tonight and hopefully tip the 1kg milestone! My supply is still going well which is great, feels so good to know that it will be protecting her from all the bugs going around. They'll remove her central line in the next 24 hours and after that she'll be on EBM feeds exclusively, so it will be my milk doing all the work for her to grow. Amazing really.

I'll let you know her weight tomorrow!