I miss her so much.she's got a staph infection
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I used to remind every new nurse to make sure I was told about any procedures etc so that I could choose to be there or not and I also told them that it didn't matter what time the procedures were done (as they try and do most over night) because I wanted to know what was going on and when.
I also flip through the notes too, they don't like you doing it, but hey don't tell me the full story once then I don't trust you telling it to me in the future. It makes me feel really glad that Brendan's surgeon is straight up. I told him don't beat around the bush we've been through so much crap just tell me like it is because there isn't always a silver lining, the PICU Dr's got the idea pretty quickly that I want to know everything and not have it glossed over.
You can do this, you are doing a great job so far. Be strong and remember that YOU are her mum and YOU are also her advocate. Trust YOUR instinct, it's got you this far x
I miss her so much.
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Lynsdan, you are going through such a tough time. Re your milk supply - express at least every 3 hours. Stress or no stress, make it a routine. Make sure you have a good symphony pump. Think about what your milk will mean to her. It won't be the lactation cookies - but they taste good. You need some-one else to make them. It will be the milk you take from your breasts that lets your body know it has to keep making milk
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Poor poppet
I miss her so much.
She is a sick bubba but she has good people looking after her, they have caught it quickly and started AB'S straight away, her CRP level is dropping, she is having less Brady's, no desats...it is scary but these are little positives. She is a fighter Hun and she is showing it.
Thinking of you and Amelia and sending healing vibes x
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Exactly what RB said hun x she is getting better. She is in a great place and they are onto it all early.
Brendan had a staph infection whilst in the NICU and then again in the PICU, unfortunately it's a fairly common infection for these little guys
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Yes, this ^^.. I have a note pinned next to Jett's cot. Doesn't always work, but eventually they get the drift.. They didn't even ask me to leave for Drs rounds today because Jett was having his tube re taped (againYou can do this, you are doing a great job so far. Be strong and remember that YOU are her mum and YOU are also her advocate. Trust YOUR instinct, it's got you this far x
Jett had a staph infection too. He was on 3 AB's for 3wks and has done well off them. I hope Amelia is better soon. yay for cuddles, I had one earlier too..
Technically they need your consent for procedures that aren't life saving. The fact that Amelia is in hospital basically gives them implied consent.. You can say to them that you do not give consent to do procedures without you there.
Awful Amelia's IV tissued.. I always cried every time that happened to Jett. IV's were the one thing I didn't stay for, but i left EBM for them to use.. Now I stay for IV's too. I'm so glad Jett's little veins have recovered a bit.. He was getting them replaced every couple of days.. The one he has now has lasted a week!
So the infection is slowly getting better ... Responding to the two types of antibiotics. The doc did warn us that she may need a blood top up as she's having loads of blood tests. Her CRP markers went from 48 (i think) to 14. So looking better. She looks pale today but had a lot of movement and crying when being held today.
The babe next to us has a septic infection... Very sick. Too unstable to even do a LP. Poor baby. He is around the 650g mark so teeny. I had the Dr telling me Amelia could have got sick from the IV site... And that this infection is prob different to the one the small baby boy has...
So heartbreaking.
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So glad she is doing much better x
Brendan has fought sepsis twice, he first fought it at 9 days old. I remember the chilling call at about 2am saying that he probably was not going to make it and did I want a cuddle. Fasted trip to the NICU I ever did. Giving him a kangaroo cuddle for around 2 hours and he was the most stable he had been since birth the doctors were quite surprised how well he did after that. Babies are so strong willed, especially when surrounded by their parents love. Amelia will be feeling your love too hun, even with a plastic box between you guys.
Don't be worried about a blood transfusion either, Brendan has had a couple and the difference before and after is incredible, if she does need one it will help her to go from strength to strength.
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Wow Early Kids - How frightening for you.. These lil bubba's are so resilient!! Brendan has had such a hard time hasn't he
Lysndan - I totally agree with what EK said about the mothers love.. Research shows that babies who have regular kangaroo care do better long term. I wish I could have skin to skin with Jett, but with all his lines, drains and now that he wears clothes, it's too hard and all the preparation would probably unsettle him. Jett hates transferring..
Re; blood transfusions, I think Jett has had about 5. He goes really red after it, then looks nice and pinkIt definitely makes a difference.
I saw you had a cuddle, it warms my heart every time
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Lynsdan I am so glad that she is getting better
Yay for cuddles
A transfusion will make her feel a lot better, Indy had 5 and Maxx had 6 and a Platlete transfuse.
I agree BAL those kangaroo cuddles are so important for mum and bub, I found it hard not being able to cuddle Maxx for 3 weeks and I first cuddle was like you have with Jett, not kangaroo because of all the wires, tubes, stoma bag and his pain. It was awesome after nearly 4 weeks to get that first beautiful kanga cuddle
I agree EK Brendan is an amazing little man
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How come Maxx had a stoma bag RB?
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He got NEC at a week old and his bowel perforated, it was quite a scary time. We thought we were going to loss him.
They had to do the surgery to insert the stoma in the incubator as he was to unstable to move and put under a general.
We were fortunate that he recovered reasonably quickly and after a couple of weeks his body popped out the bag and created it's own fistula and slowly healed with out to many problems.
Our situation was not as bad as yours with Jett but in a small way I can understand some of what your are going through.
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Wow, yeah perfs are common.. It's just amazing that Jetts weren't found.. His drain is draining though and they said where the other drain was an enterocutaneous fistula has formed.. Praying so hard that some of his bowel is still ok. Did Maxx have any bowel removed?
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I am still lighting a candle for little Jett that things will go well. I really hope they have some useable bowel. He is a very special little man.
You are an amazing mumma to Jett x
I had to google but a enterocutaneous fistula is what Maxx had also.
We were very fortunate he didn't lose any bowel but the perforations did a little damage to his intestines and he has a fat malabsorption issue but in the scheme of things it is only small.
He had peritonitis from the leak but because they were onto it all so quick they kept it under control.
His NEC was (probably) caused by the indomethison that he was on to try and close his PDA, which after two courses didn't change it anyway.
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I think all the NICU babies are just truly amazing x The strength they have and the will to live is just truly amazing, especially the ones who are not just small but also very sick.
I am sooooo glad Brendan didn't have a colostomy bag and that were able to fix the smaller intestine back to the bigger one. I was so not looking forward to changing bags at home lol.
Sad day in the NICU today. The baby next to Amelia got taken off his ventilator. I just held Amelias hand in her humidicrib and didn't let go for ages. Lots of touches but no holds today. They were really busy in SCN 3.
They are looking at a blood infusion as her hb is sitting at 96. So they will probably call tonight hopefully and ask my consent.
On a lighter note. I got Amelias birth certificate today. Well, I got two. A commemorative teddy bear one and the standard one came with it.
My milk supply has dropped quite a bit....I'm getting 50 to 60mls out of both boobies per session, instead of 85 to 100 mls. And she's gone up to 15ml...2hourly. (which they'll stop for 4 hrs before a blood infusion, and 4 hrs after...)
Yep, all the babies are so strong.
Us mummas just have to stay strong now.
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Glad Amelia is doing well x
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They probably wont ask your consent for a transfusion if they have already discussed it with you.. Not sure though..
I have to be quick, but I just found this poem...
Twas the night before Christmas, and in each isolette
Little creatures were squirming and getting all set;
Machinery sat by their bedsides with care,
In hopes that good breathing skills soon would be there.
Day shifters were home all snug in their beds,
As visions of overtime danced in their heads;
While preemies on ventilators, and some on CPAP,
Had just settled down for a long winter's nap...
When out in the hall there arose such a clatter,
The residents woke up to see what was the matter.
Away from the sink I flew like a jet
To make sure all was well at my baby's isolette.
Some bilirubin lights with their powerful glow
Gave the lustre of mid-day to babies below,
When, there before my wondering eyes, it would seem,
Was an oversized stroller and a medical team.
With a handful of needles with which they could stick you,
I knew in a moment it must be St. Nicu.
More rapid than eagles his specialists came,
And he whistled, and shouted, and called them by name:
"Now, Nurses! Now, Residents! Now, Neonatologists!
On, Social Workers! On, Respiratory and Occupational Therapists!
From the front of the unit! To the end of the hall!
Now dash away! Dash away! Dash away all!"
Up to each baby's cribside they flew,
With the stroller full of toys, and St. Nicu too.
And then, in a twinkling, they stopped at each bed
And tucked in the babies and got them all fed.
As I looked at my baby, and was turning around,
Down our aisle St. Nicu came with a bound.
He was dressed in red scrubs, and I could instantly tell
That his clothes had an obvious hospital smell;
A bag of stuffed animals was flung on his back,
And he looked like a peddler just opening his pack.
A little red pen he held tight in his teeth,
And a stethoscope encircled his neck like a wreath.
He was chubby and plump, with a few extra pounds,
And I laughed when I saw him there doing his rounds.
A turn of his clipboard and a twist of his head
Soon gave me to know I had nothing to dread;
He spoke few words, but came straight to my side,
And running down his face was a tear he had cried.
And laying his hand on the back of my head,
He gave me a nod, and slowly he said:
"Each night you come here you're aware of the danger,
But your baby is loved by the One in the manger."
Then the medical team gave a thumbs-up and smiled
And St. Nicu placed an animal next to my child.
But I heard him exclaim, as they rolled out of sight,
"Merry Christmas, tiny baby, and have a wonderful night!"
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