Oh internet, I am shattered after this afternoon. They recannulated Evelyn in order to take lots of blood, only to have the line kink and require lots of fiddling with.
Eventually they got the line working again (I’ll point out here that it was nothing anyone did wrong, just a thing that happens), while Evelyn cried, loudly. Sucrose, normally the liquid saviour of the gods – or more accurately the saviour of tiny babies undergoing painful procedures, helped, but it wasn’t as good as previous times.
Eventually it was done though and thus began the lumbar puncture ordeal.
The first needle got us nothing. The second needle got us blood. The third try got us mixed spinal fluid and blood, but not enough to be useful for testing.
The doctor was so apologetic, but she will have to have another lumbar puncture tomorrow.
It wasn’t easy to watch. She screamed so hard that she turned blue. Then once it was over, she was pale and miserable, until I managed to feed her. She sweated everywhere and gave herself a heat rash.
I was fine during it, but I’m not sure whether I want to cry or throw up more now.
And we have to do it all again tomorrow.
In the meantime, our Paeds (who are a great team, by the way) continue to consult with the Royal Melbourne Children’s Hospital, and I have to try and film more seizure activity.
It can only get better, right?
Oh V…. that just breaks my heart.
Sending much love and strength to you all
I’m not surprised you are shattered. I would be too
Sending love and hugs and calming thoughts
Sweet jesus V! I am so sorry you are having to go through this xx
Poor little baby. And poor mummy.
My son had to have a lumbar puncture as a toddler, it’s a horrible experience. The only consolation (and it’s a very poor one) is that she won’t remember it.
XX
I am crushed for you both. What an ordeal 🙁 Stay strong x
I literally have tears. Joel and I were both reading this afternoon, catching up. This is breaking our hearts. I can’t imagine how you’re coping.
thinking of you and sending much love xx
Oh gosh. I so wish there was a happiness cloud that could come and sweep your entire family up and make all the pain, worry, stress and anxiety away during this 🙁 My heart was in my throat reading this. I am so sorry V. You are a great Mum, don’t forget that. Love love, LT xo
luckily she will never remember it.
You, however… 🙁 xxxx
So much love V. When my big boy was 6wo he had a lumbar puncture and it was one of the most horrible things… Although he didn’t even regain consciousness when it was happening so maybe that was a little blessing in disguise.
I hope they find what they are looking for very quickly. You are both in my thoughts constantly.
xoxox
Oh no, oh poor little lamb (and poor you too 🙁 Will be crossing everything for success on the first go tomorrow.
Oh V, no words. So so sorry you are all going through this xx
I was thinking of you all of today. Poor Evelyn. And poor you, having to witness this.
I hope they have more success tomorrow and some answers for you.
Big gentle hugs…
It’s brutal to watch. And sometimes all you can do is put one foot in front of the other. By the way, in my experience the Royal Melbourne Childrens team are so awesome, so I’m pretty sure she is in the best hands possible. xxx
Hugs and xxxx
oh hun xxxxxxxxxxxx
Hugs darling, big hugs. I’m so sorry you are going through this.
Cait
Oh how my heart breaks for you and baby Evelyn. I hope you get the answers you need soon xxx
Big squeezy hugs for you & tiny fairy kisses for Evelyn. I hope you get some answers soon. xxxxx
Seeing your baby put through things like this is the most horrible torture ever!
The things I seen in NICU that I will never forget, I could never leave though.
Sucrose is good but I’m guessing she is getting big and it’s effects are lessening. Ask the docs if they can use something else to help her with the pain. I hope tomorrows is successful. Xx
Handwringing for you. Which is useless really but all of my love and positive thoughts hopefully count for something. Xxxx
I just feel so sorry you are going through all this. Good luck with the filming tonight. Fingers-crossed it all runs a little more smoothly tomorrow.
Oh I’m so sorry. I hope everything goes smoothly tomorrow x big hugs
That’s shitty. Poor mite.
I have no words for this 🙁
awful, wishing you strength and answers as soon as possible. You are an amazing Mumma xxx
So sorry you are all going through this. Hopefully tomorrow goes better and you have some answers soon xx
I can’t begin to imagine how horrible this has been for you all. Even just thinking about it is so heartbreaking. Hugs xx
Just love, hope, strength, clarity and everything else I can channel your way V. xxXOoo
Oh darling. Sending you love and strength. xxxxx
Oh my heart. It breaks for you both.
Oh Veronica, I am so sorry to hear this. My heart is breaking. Poor little baby. Poor you. Huge amounts of love to you. xxx
So sorry, Hon..nothing worse than watching our kids in pain…hoping things improve quickly and completely…
Poor little sausage, so much to cope with, and poor mummy too. *hugs*
Been anxious for you & your poor wee girl – now this news. Oh dear V – no words can help that I can write. Buoyed by Zoey’s comment tho. Many candles lit for u here tonight & for tomorrow … Love D xx
Shattered is surely like saying you are fine l hope you are holding up ok and E is comfortable in your embrace. Stay safe little one.
ouch! Didn’t they give her any type of anaesthetic?
I hope the next LP gives enough fluid for proper testing so Evelyn doesn’t need another one.
Crossing fingers for a speedy diagnosis.
Thinking of you all. No internet access for a few days so if silent not because I am not willing messages of love your way.xxx
I am energetically trying to hold your hand with you. I feel your pain like it was yesterday. I know the feeling of not knowing whether to vomit or cry but ultimately having to pull ourselves together as we just have to be there for our baby. The RCH neuro team are wonderful. thorough and exceptional. They leave no stone unturned. Trusting the lumbar puncture works tomorrow. Unfortunately it’s so difficult with babies they end up having to do it more than once :(( Thinking of you all. Sending strength, peace and most of all healing vibes. Big love. Purple Cath. Holding space.
Damn girl! I just caught up on your last 4 posts and I’m so bummed for you, Evelyn and the whole fam. I’m sending tons of love and good healing vibes your way.
OH I am so, so sorry reading this! Poor baby girl! I hope they find a super-super great person to do this tomorrow… someone who can get it on the first try. So sad reading this for you and her.
When you have a precious new baby in your arms and know something isn’t right you cannot imagine how it got to this point. I know. I’ve been there. I’ve watched a tiny bundle endure so much more than is fair for any human to have to endure. I’m sending you love and hugs. I hope the answers are there and a path and a course of action is visible through the fog and pain of knowing something isn’t right. My heart breaks for you and your husband. Lean on each other and gain strength to go through the hard from that. Xoxo
Thinking of you and your sweet little one, and sending love and positive thoughts your way.
Can’t stop thinking about your little one (and your other little ones. and you guys.) I guess you have a wait still before you get any info, but wishing you a bit of peace and rest over the weekend.
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