Premmie Mums #8

[Early Kids]

TK, I'm so sorry hunny. Unfortunately the nurses, like us, are only human and have bad days too Not defending her, just putting it into perspective.
If Caitlin is in an open cot there is no reason why you cant cuddle her when you want.... if you were up on the ward you'd be able to, if you were at home you'd be able to, so you CAN when in there too! Don't be afraid to stand up for yourself and remind them that she is YOUR daughter and you WILL cuddle her when you want to!
If she's in an isolette, then it's a little different, but the same still applies. She is YOUR daughter, they have to respect that too!

Also, even though she has limited suck reflex, when they are tube feeding you can also stick her on the boob, that will not only help with her making the connection between sucking and full tummy, but it will also help your supply. I used to give a breast suckle before a tube feed.

All the best hun.

Well, both my boys are sick again Brendan has only just got over a throat infection and both ears too He had a hearing test yuesterday and he is slowly improving, but still not very good He can hear, but his perception of where the sound is coming from is really bad, he also has fluid in both ears Poor bugger can't catch a break.

[tk1999]

Thanks Leesa - yesterday was a huge culmination of all the emotions I had experienced until that point and it was nice to get it all out. Sorry that you went through a similar experience

Tiffany, thanks - she is a treasure. The weirdest thing for me is that I work at the hospital we are at and I know that there are huge variances in nurses personalities and mannerisms but dealing with them as a colleauge (I work in Human Resources) and then dealing with them as a patient is a HUGE contrast - one I probably didn't give a lot of thought to lol. I did feel a lot better after the cry and it also gave me a good nights sleep.

She is in an open cot thing (will have to take a pic) and the only cords she has are the monitors and her feeding tube. No drips, IVs etc etc. So I am going up for each feed now and we are doing a breast feed first before every second feed.

Sally, its ok - I get the perspective thing - just super hormonal and it all hit me at once. I might ask one of the other nurses to go through the info with me again - re processes, when I can pick her up so I know in my head what is happening. Not sure what an isolette is but I think she is in an open cot - as I said to Tiff, might be best to take a photo and post it. Thank you - Bonham08 speaks very highly of you and when we knew that Caitlin may be early she suggested I contact you because you are such an inspiration xox. Sorry the boys are ill... i hope a small break comes your way soon xox

[Early Kids]

Aww Thanks!! Isolette is also known as a humidi-crib It's great that Caitlin is in an open cot, thats at least one hurdle out the way! She sounds like a true little champion Have the dr's given any idea as to how long she may be in for? I asked with Tristan (34+3) and was told roughly 10-14 days, depending on him. Ended up being 6 in SCN and 2 on the ward with me Mostly they tell you until their due date though.

Well Brendan has gotten worse, I'm watching him like a hawk now, I hink he may have a flu He's not vomiting and is breathing fine... but other than that has everything else.. temp, cough, sleepy, whingy/sooky, not as active, off his food and drink, even has the runs Got some hydralite icypoles, going to try those when he wakes.

[tk1999]

I was initially told she would be in till at least 36 weeks (so 10-14 days or so) but have just heard tonight that Caitlin may be moved to Campbelltown Hospital (we are currently at Liverpool) - this is a great step because it means she has come leaps and bounds with her being transferred out to Campbelltown (Level 3 nursery whereas Liverpool is a Level 5)... just waiting to see if I can either be discharged home or transferred over to Campbelltown with her... if I can't go home or go to Campbelltown then Caitlin will stay at Liverpool but not because she needs the Level 5 nursery!! So so so excited... I am hoping that my liver function tests are favourable and just need one more good blood sugar level for me - fingers crossed!!

Sorry to hear Brendan has not improved - hope the hydralite does it jobs and keeps him hydrated so he can get through this.

[nickers]

firstly congratulations on the arrival of baby Caitlin!Im Nic, mum to 2 boys. Nixon my first was born at 33+3 weeks in April 2006 and is going on 3 1/2yrs now. He was in hospital 4 wks so came home at 37 +2 weeks
thats fantastic you are most likely to get transfered, good sign of how well she is doing! How far from campelltown are you? My parents live @ Harrington Park so our that way, Im in the shire, but if down the track you'd like to have a chat/coffee etc let me know. The premmie journey is such and up and down one and you can feel quiet alone if you dont know anyone who has been through what you may be going through

[*Beema*]

Congratulations TK on the safe arrival of Caitlin

It sounds like she is doing fabulously!!

DD was born at 33+4 weighing 2350grams, and we managed a short SCN 5 days at WCH then we transferred to our Privae hossy and they roomed her with me as she was the only SC bub and we had our own MW for each shift We took her home at 35 weeks 1 day.

We were told at the WCH that we wouldn't be taking her home for 4-6 weeks! But thanks to her Paed (head of NICU) he organised the transfer of her to another Paed who was based at our Priv Hosy and was a great friend

She had a few problems, extremely low BLS, she was unable to maintain her temp for about 1 week, was in and out of humidi-crib, and heaters and required phototherapy for a couple of days. Feeding took quite a while to establish, and I completely understand the expressing!! Just retired my pump a couple of weeks ago!!

for the incident with the nurses too, I had a shocker one night made me sooo angry and upset, she fed and did DD's OB's 1/2 hour early as she wanted to leave early, so I missed out, and DD missed out on EBM that feed as I had just got enough to cover the feed.. She was very nasty when it came to BF'ing too, I dreaded walking in and seeing her on shift!

But had a reallly really lovely girl on a couple of nights who would wait for the last minute for me to come down at 3am with my milk I was one of the few who came down for that feed Also had another how snuk me an extra cuddle too

If you have any questions let me know

Take care of yourself too!!
xxoo

[nickers]

oh i meant to add also one thing i remember was the doctors etc not wanting to put a time line on how long nixon may be in hsopital for or when he could come home. I dont think they like to create hope too early on because as most prem parents learn things can go very up and down. But the first indication we were given was they thought we should ahve him hom by his due date (so expect a 6-7wk hospital stay)

i guess if you think she may be home by her due date anything sooner will be a big bonus!

[Early Kids]

I'm so glad she is doing so well! I hope you guys can get the transfer
I passed on a website to Jo, for a doll which is made to bubs stats. They are so awesome, I just organised one for Tristan too!

[tiffanny]

oh i meant to add also one thing i remember was the doctors etc not wanting to put a time line on how long nixon may be in hsopital for or when he could come home. I dont think they like to create hope too early on because as most prem parents learn things can go very up and down. But the first indication we were given was they thought we should ahve him hom by his due date (so expect a 6-7wk hospital stay)

I totally agree Nic. We asked when Phoebe was transferred back to Toowoomba base and our oh so wonderful paed Dr Diplock told us that when she was ready to come home she would let him know and then he would let us know. He was a real character and made our stay so smooth.

Tk,
That's great news about being transferred. It's one more step in the right direction-HOME
Hunidicrib/isolette is an enclosed temp controlled structure. No clothes just a nappie. Open cot= clothes and wraps.

[tk1999]

We are home on gate release... sorry I haven't been around much - you guys know the drill... I am either at hossie or in my car having a nap!

I spent Thurs & Fri night rooming in with Caitlin at hossie and we are now on full suck feeds... she lost 20grams in that 48hour period so we weren't able to be discharged completely but they were able to give us a gate release... I have to take her back on Monday for a weigh in and if a gain then we get completely discharged and if a loss or no gain then we will be admitted again

Now that she is home I have stopped 4 hourly feeds and am feeding either on demand (ie if she is awake and looking for some food) or every 3 hours - she is pretty good and I can get her attached even when she is asleep so no need to wake her!! Need to fatten the girl up for Monday!

Hope you are all well - thank you all for your stories - they got me through many a teary moment at the hossie!

Will be back later with personals

[tiffanny]

YIIIIIIIIIIIIIIIIIIIPEEEEEEEEEEEE

]Welcome home little Caitlin. Even if it is short lived you are still there for the moment.

[*Beema*]

WTG TK!!!

Hopefully you have a nice big gain for tomorrow

Sounds like youa re doing all the right things for fattening up your little girl

DD lost 40grams the day we came home (bringing her down to 2170grams, her lowest weight, a week later she had lost another 10grams, they lets us go another week and she put on 200+grams!!!

Take Care and look forward to your news tomorrow!!

[Early Kids]

WAHOOO!! Thats fantastic news
I'm so glad you guys are home now

I have to get both my boys weighed this friday. If Brendan hasnt gained any weight we have to look at a plan for him... which will probably involve going onto PediaSure formula. Hopefully he gains and we dont have to worry about it though.

[tk1999]

Drum roll please...

Caitlin put on 70 grams whilst on gate leave!! So we are now completely discharged!!! It is such a nice feeling!!

Caitlin spent a total of 13 days at the hospital and 2 days on gate leave... first 4 days were at Liverpool and 9 days at Campbelltown. Am in the process of writing her story down now

Sally - fingers crossed Brendan has a gain

[*Beema*]

Woo Hoo!!! WTG Caitlin!!!

And big Congrats to you TK as well!!

Have a lovely babymoon!!!

[Early Kids]

Thats excellent TK!! I'm so happy for you
Thanks for the wishes... Will see how he goes on Friday

[tk1999]

Thank you ladies - it was such a nice feeling to hear the words "yay for weight gain" when the nurse weighed her (I was too scared to look at the scales)

Our ECHN is coming out for the first home visit this Thursday

[*Beema*]

"yay for weight gain" when the nurse weighed her (I was too scared to look at the scales)

Our ECHN is coming out for the first home visit this Thursday

Love those words

Good luck for Thursday too, took DD 23 days to get back to her birth weight, so another slow starter
xxoo