Premmie Mums #9

[RainbowBrite]

Hugest Hun
The ups and downs of the NICU are so hard.
It is ok to cry or scream, it is understandable.
You and little Amelia are going through so much at the moment! You are both doing so well.
She is in the best hands, I have nothing but praise for the amazing staff at KEMH.
I am sending all the strength I can to you and little Amelia.
I understand how hard it is if you ever need to talk I am here xx

[LysnDan]

Thnks RB.. gosh its crazy here. Alarms going off sick bubbas. I'm terrified I'm going to lose her.

My supply is dropping too. does anyone have the recipe for lactation cookies? Stress and high bp and tiredness dont help at all...
:banghead:

I guess they'll figure out what it is soon enough. I know she's in great hands, I'm just so scared for her. I can't lose her.

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[LysnDan]

Her CRP markers are at 35... They are supposed to be below 5. She's fighting an infection... Dr is starting antibiotics via iv. She should stop her bradys within 24 to 48hrs when the antibiotics kick in.

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[RainbowBrite]

I am sorry she has an infection Hun, but they have caught it quickly which is a good thing.
They can start her on the AB's To kill the bugs quickly.
Unfortunately our tiny ones are a little more prone to infections, my DD had a couple but with AB's back to a CRP under 10 in a few days. I shed many a tears during those days also...it is scary when they are so tiny and vulnerable.
I really Wish I could give you a big hug but a virtual one is all I can manage.
lots of healing vibes sent for your little princess

[LysnDan]

I am sorry she has an infection Hun, but they have caught it quickly which is a good thing.
They can start her on the AB's To kill the bugs quickly.
Unfortunately our tiny ones are a little more prone to infections, my DD had a couple but with AB's back to a CRP under 10 in a few days. I shed many a tears during those days also...it is scary when they are so tiny and vulnerable.
I really Wish I could give you a big hug but a virtual one is all I can manage.
lots of healing vibes sent for your little princess

Thankyou. You don't know how much I appreciate your support x

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[blessedatlast]

Lysndan, I'm sorry Amelia has an infection What AB's is she on? Jett has been on Ab's on and off for the most part of his short life..

[LysnDan]

No idea what antibiotics shes on I can not remember all the meds my girl is on they're all so long. I'll look at her chart when I go in.

The Dr said the cultures could take a few days to come back? Is that normal?

So sorry Jettski is on Abs most of the time. Breaks my heart seeing them so sick. hugs to u both.

It's such a hard journey... But we will get there blessedatlast.

I'm glad I found this thread. We premmie munmas have to stick together. We will hold each other up when we need it most.

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[blessedatlast]

Write a list hun, that's what I do.. Even if it meant I had to ask the nurse about 50 times because for some reason the name of some meds just wouldn't stick..

Jett was on: Gentamicin, meropenem, metroniadazole (flagyl), ampicillin, fluclox

He wasn't on all of them at the same time, but he was on 3 at a time when he was having all his gut issues.. The worst part is, because the AB's are tough on their veins the IV's tissue.. Jett ended up having a 2nd central line just for AB's.. If Amelia is just on a normal course though she should be ok..

Now Jett's meds have been cut down, he is now on: Frudemide, lipids, caffeine, Morphine and medazalam (M&M's lol) and his TPN.

My biggest tip (not that you want advice lol) Always have EBM, available so if she has to have an IV or something put in she can have that for pain relief instead of sucrose. Sucrose CAN (doesn't always) affect their blood sugar, so stick to EBM if you can.

Even though Jett is nil by mouth, they are still happy for me to dip a cotton bud or his dummy in milk and have him suck it.. Research shows it's just as effective as sucrose, so please don't let the nurses tell you it's not. Sometimes they just do what's easier.. I have had a lot of advice from a wonderful woman who had twins in the NICU for 157 days.. I'm hoping I can pass on some of her wisdom and knowledge..

Hang in there Hun, I'm day 75 today and still a loooooong way to go.. We'll make it xxx

ETA: Yes it is normal for the blood cultures to take that long.. They need to see what bugs grow.. I was told that if there haven't been nasty bugs grow within 24hrs it's a good sign, but they keep them growing for 5-7 days (from memory).. If they suspect infection they start AB's anyway, just so they are covered rather than waiting and therefore letting infection grow..

.

[LysnDan]

Oh hun.. I need all the advice I can get...

Thankyou ill ask them to use EBM instead of sucrose

I know she's on TPN, caffiene, nilstat, but that's all I can remember. I haven't seen her yet. Still waiting in my room for my meds. Gahh

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[Melssy86]

sending huge to blessedatlast and lysndan and anyone else that needs them.

And these are recipes for increasing milk

Lactation Boosting Oatmeal, Chocolate Chip & Linseed Cookies

1 cup butter or margarine

1 cup sugar

1 cup brown sugar

4 tablespoons water

2 tablespoons linseed meal (or flaxseed)

2 large eggs

1 teaspoon vanilla

2 cups flour

1 teaspoon baking soda

1 teaspoon salt

3 cups oats, thick cut if you can get them

1 cup (or more I use a whole packet) chocolate chips (milk or white chocolate both taste yummy)

2 tablespoons brewer’s yeast (be generous)


Preheat oven to 180c (fan forced) 200? (regular oven). Mix together 2 tbs of linseed meal and water. Set aside. Cream butter and sugar. Add eggs one at a time, mix well. Stir linseed mixture and add with vanilla to the butter mix. Beat until blended. Sift together dry ingredients, except oats and chips. Add to butter mixture. Stir in oats, then chips. Scoop or drop onto non stick baking sheet, or one lined with baking paper. Bake approximately 12 minutes.

Linseed meal can be found in the health food aisle of your supermarket or at health food stores. Brewer’s yeast can be found at health food stores. It MUST be brewer’s yeast - NO substitutions.




banana not-just-lactation muffins


Prep Time:
10 minutes

Cook Time:
24 minutes

Servings
12

Original Recipe Yield 12

Ingredients

1/2 cup AP flour
1/2 cup whole wheat pastry flour (or AP flour)
1/2 cup ground almonds (or AP flour)
1 cup rolled oats
1/2 cup sugar
2 tsp baking powder
1 tsp baking soda
1/2 tsp salt
1+ tbs brewer's yeast (optional; add more as desired)
1 egg
1 cup milk
1/2 cup applesauce
1/2 tsp vanilla extract
2-4 ripe bananas, mashed

Directions

Spray a 12 cup muffin tin & preheat oven to 375.
Combine dry ingredients in a large bowl.
Beat egg lightly in small bowl, then stir in milk, applesauce, and vanilla. Add the mashed banana and combine thoroughly.
Add wet mixture to dry & mix until just combined. Fill muffin tin.
Bake for 20-24 minutes. Cool on baking rack.

[Early Kids]

I wish I was closer, I make an awesome lactation cookie x Speak to a lactation consultant too, they are so helpful in the NICU. I found the absolute best way to get more milk was by expressing next to them, if you are comfortable doing that it's worth it x

Infections suck DS1 has been on sooooo many antibiotics for different things it just sucks. He had two central lines last time just to cope with the amount of drugs he was on.

It is a very scary time, but they are so good at what they do. DS1 shouldn't be here at all, he was lucky to make it past 16 weeks let alone making it through birth and then his most recent major illness. Babies/Children are so resilient, I know it doesn't feel like it at the time, but they really are. And statistically girls are stronger fighters too, so you have that on your side also.

BIG hugs, you are doing so well xx

P.S. With the lactation cookies I found it SOOO much easier just making a big slice rather than individual cookies. No change to the mixture just make it a slice, so much easier than bothering with making little cookies.

[LysnDan]

So peeved. They did a procedure (lumbar puncture) on Miss A before letting me know. When I rang tonight they told me and I'm a bit upset they didn't tell me they will be told tomorrow that they are to inform me of any procedures so I can choose to be there or not or atleast know about them ...

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[RainbowBrite]

Grrrr...they did that to me too with DD3, Christmas night.
I understand how angry you are, it is a invasive procedure and you should be notified.
Speak to the NUM rather than your nurse, she will make sure that it does not happen again.
I am so cross for you hun.
I think the staff do them often enough to not think anything of them but when it is your child it is huge and you deserve the right to know.
Thinking of you and your gorgeous girl xx

[blessedatlast]

mg: I agree speak with the NUM or CNC.. That is absolutely terrible. They shouldn't be doing things without your consent.. I have had to explain loads of times that although these procedures are routine in the NICU, this is MY SON and I have a right to be fully informed before anything takes place.

Thats just crap, I'm so sorry

[Early Kids]

I agree with RB and BAL, not on at all.


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[LysnDan]

Bubbas lumbar puncture came back negative phewww but the culture they did is growing bugs. So she's got an infection... But they r treating her with 2 types of antibiotics and she isn't destatting or having so many bradys and she's been a little wriggle worm today so must be feeling slightly better. Also her CRP markers are going back down slowly. And best part... I got another cuddle.

And I gave them a firm talking to about me needing to be informed about such invasive procedures. Apparently they don't need my consent to do a LP in SCN3. I'm so mad. They know to call me now whatever they do. If it happens again then ill be writing a complaint/request. They need to keep me informed. I think I've finally found my voice in the NICU.

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[Early Kids]

Yeah we never had to give consent for that type of thing, but at least they let me know when they were doing it! I'm so glad you spoke up hun x

[LysnDan]

I wish they called to let me know. I was fuming last night....

Still not too happy with them.

Least she's looking and feeling better. I hate seeing her so sick.

Before I left her IV tissued too Gahh.

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