Thinking of you all through this trying time xo
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Thinking of you all through this trying time xo
Thanks for keeping us updated Michelle...
Shannon, I am sending all every single get well vibe and all of the hugs in the world to little Jessalyn. I hope she is able to recover and heal from this fairly quickly... though what a huge operation for such a tiny little girl.
Thinking of you both heaps,
All my love and hugs,
Shannon I hope all has gone well and that Jessalyn is recovering well also. Big hugs to you both.
Hi girls,
the latest from Shannon is :
Jessalyn slept the day away (thanks to the morphine) which is the best thing for her to do at this stage. I even managed to get an hrs rest. Things look and feel a bit better this afternoon as a result. The big girls (Ziana and Brielle) are doing well but missing Mummy!
So that is good news all round. Hopefully it is a restful night as well.
Best wishes Michelle
Your doing a great job at keeping us all updated Michelle.
Shannon - It is wonderful to hear that she came through her operation relatively well. It is also good to hear that you are feeling a bit better today as well after some much needed sleep by the sounds of things.
Our family continues to keep you, Jessalyn and the rest of your family in our thoughts.
Love
Shannon - another hurdle jumped! Well done Jess. Praying for a speedy recovery and the best possible prognosis.
ps hubby thinks I've developed a secret addiction because I have to come and check for updates on Jessalyn every couple of hours.... I explained it all to him and he now sends his best wishes. :D
pps thanks Michelle for passing this info on to us
Oh that is wonderful news that she is doing so well!
Poor Shannon- I can imagine her on the parents fold out bed, I hope they gave them a single room..so she can at least sleep properly when she is able to sleep..Poor little Ziana and Brielle must be hard on them too!
Thanks again for the updates Michelle, you are doing a great job!
Great news! Jessalyn is such a brave girl.
Great news Shannon, we are all wishing the very best for little Jessalyn...
Shannon, that is wonderful news. I hope you're able to give her a feed as soon as possible. Poor little bubby - big scar right across her belly :hug: I hope that Jessalyn is one of those that can take her liver right through to 20years++.
:hug: Hugs to you all Shannon, particularly little Jessalyn and of course your big girls at home.
Pleased to hear Jess came through the op well. Can't wait to hear the news of her feeds.
xx
I`m so pleased that Jessalyn is recovering well. Sending you lots of love and hugs and as each day passes Jessalyn will get stronger and stronger.
Take Care
Deeanne
I'm really pleased to hear that Jessalyn is doing well. I am sending her all the get well vibes I can muster, and am sending you and your whole family lots of love.........
Shannon - good to hear that all is going well. Jessalyn is a tough one! I hope all goes well with her bowels and she can have a feed soon. Are you having to express whilst she isn't feeding?
Anyway... thinking of you :)
Thinkin' of you Shannon. Glad to hear that Jess is doing so well. What a strong little mite she must be...
Hi Shannon,
I should say first of all that or third baby, Rose, was born with biliary atresia in April 2003.
I've been doing some research for a bit of writing about it, and last night typed "biliary atresia" into a google search. One of your discussion posts about Jessalyn came up in the search results. So I have found your story entirely by accident.
I then spent ages reading all of your posts, and they took me back with vivid detail to where our family was 2 years ago. I found your writing extremely moving and clear. When I read about the cut right across Jessalyn's belly, I remember how we felt when the nurse in recovery pulled back the sheet to show us Rose's belly after her "Kasai procedure" (the op Jessalyn will have just had).
The path you travelled on to arrive at Jessalyn's diagnosis was much more convoluted than the one we travelled on, and you had the added stress of the initial, separate problems that were discovered. I could relate though to the way the biliary atresia information seemed to be dawning on you, with each subsequent post you wrote.
Anyhow, we have a very long story, but I just wanted to tell you that Rose is now a completely healthy 2 year old, with normal liver function. She received a liver transplant at 12 months of age, and had a mighty rocky time of it. I'm only mentioning that rocly time because of the fact that you would just never know it now to see her. I want to give you hope in the stress and exhaustion of your current hospital circumstances. These babies have incredible resilience!
Do let me know if you need any info at all. At the same time, I have no desire to bombard you with information. Just to let you know that we have got to know very well the Royal Children's and all its quirks, and also the entire gastro team. Also, I don't know whether anyone from the gastroenterology team has got around to letting you know yet that there is a specific support group, based at the hospital, for parents of kids with biliary atresia. I wouldn't be surprised if they haven't yet mentioned it though, because I know that this early surgical time is pretty busy, with the focus being on getting that section of intestine hooked up to the liver! There'll be plenty of time for all the information in the world, once Jessalyn recovers from her surgery and the dust settles - and it sounds like she's doing all the right things. You'll have her home in a flash! (Are you on 4 Main? Or on another ward?)
I've told my other half, Shane, today about my having discovered your story, and we're both thinking of you. If you ever have any questions about how to navigate this biliary atresia experience, let us know! (I'm sure you're discovering your own ways already. We all do it differently too.)
Kindest regards,
Lynne
(mother of Rose, 2, Hannah, 7, and Lewis, 12. Pregnant with 4th baby, due October)
Welcome to Belly Belly Lynne, what a wonderful support you'll be for Shannon, I'm sure she'll be thrilled to hear your daughters story!
Amazing news to hear after all little Jessalyn is going through there is light at the end of the tunnel.. :D
Hi from me too Lynne. It's great that you found this site and that your little one is doing so well :D
Shannon great to hear another day has passed without any setbacks =D> =D> =D>
One day at a time, my dear. One day at a time.
Hope tonight and tomorrow are smooth sailing, too.
Thinking of you Shannon and Jessalyn. Glad to hear Jessalyn is recovering well. Got everything crossed for you both.
Jo
Lots of hugs, kisses, thoughts, well wishes and get well vibes from our house to yours Shannon.
I am so glad that Jessalyn has come through the op ok, hope she is going well and you get to go home very soon!
Thanks for the updates Michelle - much appreciated
Shannon I'm so please to hear that Jesslyn is doing well. All of you have been in my thoughts constantly over the last few days. Thank you Michelle for posting the updates.
Thanks Lynne for posting your story and your support for Shannon, Jessalyn and her family.
Good to hear things a going well Shannon. Frank, Alana and myself are thinking of you.
Shannon- so glad you got a chance to jump on and collect our good wishes, you have us all here for support. And you don't owe me anything dear! I am just so glad to have been able to do something, I just wish there was more I could do for you guys! But I wouldn't say no to lunch down the track LOL.
Hoping today sees Jessalyn getting better and feeling better and that she soon is feeding. How're the bb's going without feeding?
Lynne- I am sure too that Shannon will greatly appreciate you being here for her support and will welcome the success story of your dd Rose!
Best wishes Michelle
You're so postivie Shannon, and I don't know if that's how most parents of sick kids are, but I find you very inspirational. I really hope Jessalyn's recovery is quick from here on in. You all deserve happiness and some bonding time as a family!! Im sure you're other girls are just hanging for you both to be home. All the best and thinking of you often xoxo
Hi Shannon, so glad you got to pop in from the Parents Resource Centre & pick up all the good vibes from everyone. Phew, 6 hours. So glad to hear all is well, how wonderful that she's feeding now. Hope she's back on the boob & building up your supply soon. 8 weeks huh, here's hoping for the best!
Lynne, how great that you found Shannon's thread. What a lovely surprise for Shannon! Welcome to BellyBelly. I hope you'll hang around & get involved as well as staying in touch with Shannon. I found BellyBelly the same way, Googling twins, lol. (that is my husband found it for me). So glad to hear your daughter is doing so well after her transplant.
Yet more hugs Shannon!
Oh shannon I am so happy gfor you and Jess, fanatstic that you have been able to get to the computer to check in on all your wishes of support..have they given you a breast pump!!!????I know it's not the same as the real thing but stay on there girl..don't lte your supply drop off!!
I have all my fingers crossed for your birthday present tommorrow..
huge hugs and well wishes from us.. :hug:
and !! :happybday: to you Shannon for tomorrow!!
Hi Shannon,
Great to hear about the feeds staying down, and all the other news of Jessalyn's recovery. Isn't she clever! I can remember being in floods of tears (happy ones) when I finally put Rose back on the breast after all those awful days of being on the milking machine. It was like my tears were raining on her head to help her grow! I completely agree with you about 4 Main staff - we fell in love with them for the way they looked after Rose around the time of her Kasai operation.
I'm also excited to read that Winita (Hardikar) is Jessalyn's hepatologist - we love her with all our heart, for all she did for Rose and for our family, and she's just the most brainy and talented person as well.
We had never heard of biliary atresia either before we had Rose! But once Rose came along we found out that a friend of a friend has a daughter with it. Of course we've got to meet a number of parents and kids now, through liver clinic and then through the support group (which is still quite new). Shane and I recently bumped into a woman who is about 30 years old, who had one of the very early Kasai procedures done in Australia. Thank goodness HER Kasai worked, because she didn't end up needing a transplant till she was about 20. If it hadn't worked, she would have been in strife because they weren't doing liver transplants on babies at the time when she was a baby! We're very lucky that transplant surgery has become so much more commonplace now - and by the way, the transplant surgeon is a gorgeous, brilliant man, with a great team. Our kids are in excellent hands in Melbourne, because there's a lot of talent and interest and research about treating childhood liver disease.
Rose IS doing well, not just muddling along, but she's really a healthy little kid - we haven't lost the novelty of it. We're so grateful to the donor family. You're right that her Kasai didn't work. When it failed I thought it was the end of the world - I hovered over her nappies in those early months, almost hallucinating a green tinge in her poo. In reality, the poo stayed very pale - which of course meant that the bile wasn't getting through to her digestive system. You sound so very sensible - you already know that it will be a difficult wait to see what the outcome of this surgery is.
But even if it doesn't work, there are many tricks up the doctors' sleeves. Now that Rose has come out the other end, I can see that the fact that she was one of the few who get very sick, very young, turned out for the best. Here she is with a new liver, and she's young enough not to even remember she was sick. Even her illness before the transplant, scary as it was at times, turned out as an opportunity for our family to have many positive experiences. Don;t get me wrong, it wasn't a bed of roses, and I'd never wish an illness on anybody, but by the same token, I don't regret anything we've been through.
Yeah, I'm sure we'll meet one day Shannon, if not through the group, then very possibly in the waiting area outside Winita's clinic! In the meantime, all strength to you and your fighting little super girl! And don't ever hesitate to email me with any little questions or concerns. If you're anything like me, you'll go through different stages with that desire for information - sometimes I'd kind of "overdose" on information, and felt a bit overwhelmed at the very thought of hearing another experience from someone who was further along the track than Rose was! Other times, I wanted to know everything, and right now!
Even though you're being very well looked after on 4 Main, I know you must be so very tired by now, after this huge week. There's no such thing as real sleep in a shared room, is there?! I hope the ward has cleared out a little for the weekend, and that you have a chance to have a bit more peace and quiet for your birthday, and for the reunion between Jessalyn and your breasts!
Warm regards,
Lynne
Wooo Hoooo for Jessalyn! That's fantastic news that she's able to take milk again so quickly.
Hope she treats you to a big stinky one real soon 8-[
:happybday: Shannon!
Happy birthday Shannon! Good to hear that Jessalyn is going well. I hope that you got to BF her today :)
Sending you loads of hugs to you during your hospital stay with Jessalyn, sounds like she is doing well. Hope that all continues to improve & that you get your birthday wish today & get to give her a bf.
Happy Birthday Shannon!
What terrific news that Jessalyn is starting to feed, hopefully she starts guzzling very soon LOL, get those bb's working !
I hope you get a second today to enjoy getting older as well, I can imagine you are very tired. We are all sending get well vibes and hopefully the 8 week wait flies.
Love Michelle
that is great news shannon - hopefully you have had a good birthday & got to feed your precious little girl
Shannon, that is just wonderful news that Jess is now taking some feeds, and is crying a lot less too.
I hope you managed to have a nice birthday today, and that you were able to get your wish and BF your little girl. Big :hug: for you and all of your family...
Welcome to BellyBelly Lynne, and thankyhou for sharing your story about little Rose. I am so happy to hear how well she is doing today.
Shaonnon, I hope you got your birthday wish yesterday and was able to BF Jessalyn. Wonderful news that she`s able to feed a little now, she`s such a precious little girl.
Welcome to BB Lynne, your story is amazing and I`m sure it has given Shannon a lot of comfort.
Take Care
Deeanne
Happy Birthday for yesterday Shannon! I am so glad to hear that Jess is doing so well. I've been thinking of you. I hope you have been able to stick her on the breast and that your supply is building up again.
Welcome Lynne! Thankyou for sharing your story.
Happy Birthday!
Glad to hear things are still looking positive. Jessalyn is doing really well.
Shannon, Happy birthday for yesterday-sorry I was late in posting this darlin'.
Glad to hear Jess is doing a bit better and that she's BF, good onya honey.xx
Happy (late) birthday Shannon. I'm so glad to hear that Jessalyn's op went well, and she's starting to feed again. Hugs and kisses to you both. You both show so much strength and resilience - it's an inspiration to me.
Lynne - thank you so much for sharing your story. It's wonderful to hear that little Rose has come through everything so healthy, and that you had such positive experiences in the hospital environment. I hope you enjoy Belly Belly, and can gain support from everyone here, as well as giving so freely to Shannon.
Shannon- good on you for taking charge of the situation, and so so glad things are going so well. LOL at the Poo thing, Other's may not understand but we do!LOL that is great! Kiss your darling for us and hope today is even better!
Love Michelle