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Baby Maddie's Heart Breaking Struggle

  • Daneil and Laurels Update 27th Feb     29 February 2020
    Posted by: Keryn, Hayley, Charlotte, Karina Hore, McIntosh, Hansen, Obrien
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    Maddi update: So big day tomorrow. Basically the doctors aren't 100% sure why she cant come off the high flow oxygen. Tomorrow morning shes going to be put on a ventilator (cant use high flow on a plane) then Laurel and her will fly back to Auckland on a starship plane. They will keep her sedated and on the ventilator over the weekend. We will be back in Piccu. On monday the starship doctors will put a camera back down and also give her a CT scan. They will then decide what they are going to do. There are a few options on table but they will discuss this after her procedure on Monday. It's going to be hard seeing our smiley baby back on ventilator but hopefully after monday we will finally have some answers and a plan.

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  • Daniel & Laurels Update 21st January 2020     22 January 2020
    Posted by: Keryn, Hayley, Charlotte, Karina Hore, McIntosh, Hansen, Obrien
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    Shes out of surgery. Had 2 grommets put in ears. She handled surgery well. Where she has vascular ring surgery has healed well, further down though where tubes branch to lung into two pipes is quite narrow. Likely to need a tracheotomy until they grow bigger but talking with surgeons at starship first. Reason they think shes struggling now is shes

    had growth spurt, body needs more oxygen but pipes aren't wide enough at moment. Will chat more to doctors over next few days but she did really well handling all aneasthetic. Spending night in Intensive Care for observation the back to HDU tomorrow all going well.

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  • Daniel and Laurels Update 17th november     21 November 2019
    Posted by: Keryn, Hayley, Charlotte, Karina Hore, McIntosh, Hansen, Obrien
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    Someone got to go for a walk thru Hagley Park today. Very excited wee girl. Shes doing good. Plenty of tests next week to see where everything is at. Laurels good, bit of cabin fever but I'm sure the walk helped, just gets hard sometimes not being able to go home etc. Will be busy week but hoping for all good results for our wee superhero. A great long weekend.

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  • LAURELS UPDATE 16TH NOVEMBER     21 November 2019
    Posted by: Keryn, Hayley, Charlotte, Karina Hore, McIntosh, Hansen, Obrien
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    We are finally home will at chch hospital. Another 2-3 weeks hopefully then home. Just a couple of pics of her big trip home on the starship plane. If anyone wants to visit just message or text me before you come maddi gets tired very easily. Hopefully no one gets upset if I do say no, if she gets to tired.

    Again thank you from me and maddi for your love and support xxx

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  • Daniels update 13th November 2019     14 November 2019
    Posted by: Keryn, Hayley, Charlotte, Karina Hore, McIntosh, Hansen, Obrien
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    What a wonderfully heart warming day! It was so good to have all the family together with Laurel and Maddi. Thankyou to all our amazing family and friends for your generosity in helping make this possible. We have no idea how to thank everyone but you all have truly made us have a very special time. The kids were stoked to spend plenty of time with Maddi, they havent seen her in over 7 weeks or Laurel, a very magic time.

    The good news dosent stop there. Maddi is over her tummy bug and arrangements are now booked for Laurel and Maddi to return to Christchurch hospital on a medical plane on Thursday or Friday! This is a massive step. Maddi is out of isolation, no measles and ready to be cared for in ChCh hospital. This will be a relief for Laurel, who hasnt been home in over 7 weeks and pretty much been in like hospital prison. She will be going to a ward. Maddi isnt out of woods totally she still has fluid but its decreasing, she may still need another brain drain but if so they can do that in ChCh. Just like to thank our Auckland Angel's Aunty Pauline ClarkePauline and Uncle Mike Clarke your support and love in our most trying times will never be forgotten, like having a second set of parents...amazing. Thanks also to our other friends who live in Auckland and have offered help and support, just knowing we had backups and offers of help meant so much. Our little girl is a superhero, she has been thru so much but keeps smiling and ticking so many boxes. Laurel cant wait to see everybody and if youd like to visit Maddi and Laurel in hospital in ChCh that is fine just send a message first so we dont pack out room at same time. We are doing good, weve found strengths we thought we never had, and realised we truly have the best family and friend support network in world. We are truly blessed and thankful to have each and everyone of you in our lives.

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  • Daniels update 11th November     11 November 2019
    Posted by: Keryn, Hayley, Charlotte, Karina Hore, McIntosh, Hansen, Obrien

    So the MRI showed similar amount of fluid as week before, so no real change there. It will be a case of monitoring it, antibiotics is an 8 week course so a long road ahead still. Shes been quite unwell the last couple of days vomiting, with a very sore tummy. The doctors have done a CT scan, X-ray, and blood and poo tests but nothing has come up so are unsure as too what's causing her unrest. They will re evaluate again tomorrow but have reduced her feeds to a trickle of 15mm every hour through the tube. Hoping just a little 24 hour tummy bug but we dont know. Exciting week this week. Kids havent see their sister in over 6 weeks and due to amazing support of family and friends we are flying Lucy, Holly and Mark up on Wednesday till Friday too see Maddy. Will be awesome to have all family together for a few days.

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  • Daniels update 7th November 2019     11 November 2019
    Posted by: Keryn, Hayley, Charlotte, Karina Hore, McIntosh, Hansen, Obrien
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    Maddis doing well, had a drink from a bottle for first time in 6 weeks today. Had an MRI which will be crucial in where we go from here. More fluid will mean another surgery, return to ventilator, and return to intensive care. Little or no fluid will mean we stay on ward and onwards to recovery. With meningitis the body produces more brain and spinal fluid than is needed it it makes it hard to absorb, it usually lasts 6-8 weeks so we are neally halfway through that. Fingers crossed. She spent some time on her bouncer, plenty of smiles. Shes now just on panadol and her anti seizure medications. Still waiting on ear nose and throat to test her ears for fluid and make decisions around that. Laurel and jenny are doing well. Onwards and upwards.

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  • Daniel & Laurels Update 2nd November     2 November 2019
    Posted by: Keryn, Hayley, Charlotte, Karina Hore, McIntosh, Hansen, Obrien

    UPDATE: So few things this week. Maddi had her MRI and showed some more fluid but not enough to warrant another surgery. They are monitoring her closely to see if anymore buildsup, if it does they will react accordingly. We all produce brain and spinal fluid and normally absorb this ourselves. With meningitis the body produces more than you can absorb and hence the extra fluid. As a result Maddis eyes are fairly wonky at the moment, one goes one way and one the other or cross eyed she is also deaf in one ear and partial deaf in other. this is a result the doctors think of fluid buildup but hope these things will disappear over next 3-4 days as the body disposes of the fluid itself. If she continues to produce the fluid and is not absorbing it herself then she will likely need surgery number 8 next week. On the GOOD side of things, all her stats are stable, shes breathing completely on her own and shes now moved out of Intensive Care and into the High dependancy unit or Brain ward. Shes monitored 24/7 and has her own room. They are increasing her feeds now too as she becomes a bit more active. Laurels mum Jenny flies up this weekend to spend a week with Maddi and Laurel, so that will be good. Hope everyone has a good weekend.

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  • Daniels Update 30th October 2019     30 October 2019
    Posted by: Keryn, Hayley, Charlotte, Karina Hore, McIntosh, Hansen, Obrien
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    Beautiful moment (mum) Laurel Gray managed to take a beautiful video and captured those smiles. Emotions overload today. As people know shes been on a breathing mask and next step is stepping down to high flow oxygen. Well she bypassed that step and is now breathing totally unaided and doing so very well. Next step is an MRI on Thursday or Friday which is key, will show if any more fluid is accumulating round the brain. If so she will need a shunt to direct fluid to her tummy to pass, if not then could well be arrangements to get out of intensive care and into a ward. The smiles are to share for everyone for all your amazing support, comments,messages, prayers and love....Laurel and I would not have got to this point without all the good vibes. We cant thankyou enough.xxxx

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  • Daniels update 27th October 2019     28 October 2019
    Posted by: Keryn, Hayley, Charlotte, Karina Hore, McIntosh, Hansen, Obrien
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    So heading back to ChCh. Had a good few days. The drain came out yesterday, it drained neally 500ml of fluid. Shes on bubbles but they've been reducing. Shes now in a cot. We got a few smiles today, which after 5 weeks is very touching to see. Got to have a hold. Will no about measles on Wednesday but so far all good. She may need a pic line inserted which will involve surgery, she will also have a follow up MRI tomorrow or Wednesday, if fluid starts accumulating again then she will need some more surgery to put a shunt in to divert to her tummy. The antibiotics are doing good but it is an 8 week course. She really is doing very well. Managed to get a car for Laurel thanks to Aunty Pauline and Uncle Mike and we went out for dinner last night. Good to get out of 4 walls of a hospital once in a while. Fingers crossed for good MRI result but even if surgery is needed we are very happy with Maddis progress

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  • Daniels Update 24th October 2019     25 October 2019
    Posted by: Keryn, Hayley, Charlotte, Karina Hore, McIntosh, Hansen, Obrien

    So Maddi had brain surgery number 2 today. She did really well, has come through good. They cleared more fluid, it was a good colour and hadnt developed into pus. Shes still on ventilator as shell be having an MRI tomorrow to make sure they got it all. All going well they will try to take her off the ventilator tomorrow, remove the drain on weekend. Come weekend we can also cross measles off the worry list. They will be measuring her head every day to monitor anymore swelling, couple if weeks another MRI will be done if they do find more fluid a shunt will be put into her head to move fluid to her stomach so she can pass it out. Meningitis takes 2-3 weeks to run its course, so whilst antibiotics keep infection at bay, you are always vulnerable to reinflammation. All things go well they will look at weining her off bubbles, other drugs shes been having like morphine, diazepam etc. Hopefully finally moving in right direction, no doubt probable future bumps but fingers crossed no more majors.

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  • Daniels Update 22nd October 2019     22 October 2019
    Posted by: Keryn, Hayley, Charlotte, Karina Hore, McIntosh, Hansen, Obrien

    Feeling bit angry today. Maddie has been going ok, she had few seizures on Sunday night so they upped her anti-siezure medication and they've stopped. She has a wonky eye but docs seem to think just her fighting the meningitis infection she contracted in hospital. It will take a good 2-3 weeks to get bug out of her system. She had a bath yesterday and got wear clothes.

    Then weve been dealt a savage blow today. Laurel Gray was told Maddison and other babies in Maddis room have somehow been exposed to measles! How this happens in intensive care I dont know and I'm just pissed off. They wont tell us whom but said she has been exposed and due to her immune system being so weak at moment it is highly likely she will contract it. Shes been given some drugs to try and fight it but we wont know if she has it until 5-7 days when fever and rash develops. I jumped thru a million hurdles to get Lucy vaccinated to get her upto see Maddy, how this happens is beyond me. She went upto hospital for a respiratory issue and now shes contracted meningitis and ontop of that is likely to get measles! The rooms in isolation, Laurel and I fully vaccinated so alowed in but restrictions on visitors in place so kids wont be able to go upto see her for at least another 2 weeks now. I am at a lost for words, I have tried so hard to he positive thru this whole ordeal but the news today is just devastating and very difficult to process. I dont know how much more my wee poppet can handle. We just have to pray she beats "the highly likely" and dosent get it. Unbelievable.

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  • Maddies Journey 18th October 2019     19 October 2019
    Posted by: Keryn, Hayley, Charlotte, Karina Hore, McIntosh, Hansen, Obrien
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    Daniels update

    What an incredible day. Firstly peoples generosity is truly amazing. Laurel Gray and I feel a little overwhelmed with it all and really dont know how to say thankyou enough to all the amazing people who have taken time to think of us in creating the page, donating, sharing, and posting comments and sending messages of support. Many tears shed today, but happy tears. The little battler Maddi blew the doctors away again today. They decided this afternoon to take her off ventilator and she handled it like a trooper. We were warned she could have brain damage where she could lose speech, limb movement, memory, impairments. Well every limb was moving today, she let out plenty of little cries, and laurel got to have a hold and she recognized her voice and it soothed her. Very emotional moment, we would love our daughter no matter what but to tick off limbs, memory, and speech less than 24 hours after brain surgery is mind blowing. We haven't had alot of good days up here but today was definately one of them. There is still a very long recovery, many boxes to still tick, possibility of reinfection or reinflammation but it's one day at a time for us and we couldnt have started off with a better one. Being so overwhelmed we wanted to share the special mama-maddi moment. We wanted to share our relief and joy of an unforgettable day. God bless you all.

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