Heart Children roll call
Printed From: OHbaby!
Category: Support
Forum Name: Parenting a child with special needs
Forum Description: A place for those parenting children with special needs to find support and share their thoughts
URL: https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320
Printed Date: 02 May 2024 at 11:11am
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Topic: Heart Children roll call
Posted By: NikkiB
Subject: Heart Children roll call
Date Posted: 01 February 2010 at 8:26pm
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Hi
I thought I'd start a thread for those of us with Heart Children. Somewhere we can go to discuss stories, concerns and happy times. I know there are a few of us that have Heart Children and would love to hear from you. My youngest son Jacob has pulmonary atresia and MAPCAs. To date, he has had one catheter and one attempted catheter. Full heart repair is booked for the end of this month 
We were orginally told in Feb 2009, that they could not repair his heart and that he had a short life expectancy (10 - 20 years). On the CT scan in Sept 09 (after a failed catheter), it showed confluent central pulmonary arteries (which they believed Jacob didn't have). They are now confident they do do a full heart repair  Thank goodness for those beautiful central pulmonary arteries!!!!
I'm feeling confident about the surgery, but not looking forward to the journey that Jacob will take us on (he has a bad habit of scary us!) I know every child is different, but how long did your little one have to stay in hospital for after open heart surgery? For those who don't live out of Auckland, were you discharged from Starship or did you do a hospital transfer to your nearest hospital to fully recover? ------------- A very lucky mummy to two gorgeous boys: RB 3/10/2008 JB 29/12/2009 |
Replies:
Posted By: fire_engine
Date Posted: 01 February 2010 at 8:59pm
Wow, what a journey for you. Good luck for the repair  Who's your surgeon?
Dan's a heart baby - aortic coarctation that was picked up at 11 weeks (another week and we wouldn't have him today  ) and operated on immediately. Also bicuspid aortic valve that's functioning fine currently.
Each time we go for checkups they find something new so we now have subaortic stenosis and mitral stenosis on our "problem list". Both mild and nonsymptomatic but will always have me a little on edge as they will progress and the SAS is likely to cause problemts with the bicuspid valve. We had Kirsten Finucane, legendary woman for our surgery. Daniel was a thoracotomy not open heart and we were out a week later. Some of the open hearters were there for 2-6 weeks depending on the surgery and post-op course. The kids on the ward from outside Auckland were discharged to their local hospitals rather than immediately home but again that may well depend on the surgery and recovery. I feel like a fraudulant heart mum. What Dan has is so minor compared to many heart kids and I feel guilty or like an imposter for identifying him as a heart kid. However, it is likely he will have ongoing issues later in life (and I still have a really really strong emotional reaction when I think about that time) so I do continue to identify as a heart mum. ------------- Mum to two wee boys |
Posted By: Raspberryjam
Date Posted: 01 February 2010 at 9:20pm
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Hi all, I have a heart babe, but before i tell you about her, I must say Im always a little dubious about swapping stories.
For anyone who reads these stories , especially if you have only just been diagnosed, what each defect or issue means for one child - really only pertains to that child - the way the kids cope is so individual - even if they have the same defect. My beautiful little girl Milla, has truncus arteriosis - which is no pulmonary vessels, a leaking truncal valve (at the base of the aorta) and did have a 7mm VSD which was closed at her 1st surgery , full replacement of pulmonary vessels at 1st and second surgery. Her truncal valve is yet to be repaired as it is mild She has had 4 catheters - 3 with dilatation for narrowing in both the RVs and SVC Nikki to answer your question and to tell her story, Milla was born at National womans so after only 6 hours in NICU we were on the ward. She was in HDU for 1 week, mostly beause I had a c section and couldnt care for her on my own. at 3 weeks 5 days she showed her first signs of heart failure, it was sunday, had her first open heart on the tuesday at 4 weeks old. Milla came out of surgery with her chest open - which is common for tiny babies - even though we knew that - alarming!! 24 hours later they closed her chest and her ventilator moved - as a result she had a bracycardic arrest and they had to whip her back open and massage her heart for 4 mintues to stabilise her. As a result of her issues we spent a very long 10 days in PICU and a further week in HDU before being put back ina room. We left 8 one day short of Milla being 8 weeks old. Take two was because the first op didnt work - due to size of Milla, size and material of the replacement vessels and Milla is inclined to have narrowing of her vessels. So back in at 6 months exactly - for a full pulmonary replacement - from the time we handed her to the PICU nurse to the time we rolled her back to the ward 22 hours!! - incredible - she woke the day after surgery breathing on her own and trying to taker her ventilator out. From memory a few days in HDU then home within a week. Size makes a huge difference - I hated the way they went on about feeding her more and weighing her so often - but it was just about the difference between life and death for us Dh was in Ronald Mcdonald family rooms on level 3 while i was still in maternity, then kicked of home - which sucked - we had never had a night apart the whole time we had been together and now he couldnt be with us when they were expecting Milla to die - it was horrible. Each surgery or time in HDU - we have both been allowed to stay at Ronald Mcdonald - but otherwise it was just me allowed to stay in Millas room because we live in Auckland Huge story!!!! feel free to ask questions - Im so proud of my little super star!! ps our surgeon was Liz Rumball - she is our Hero!! ------------- http://lilypie.com] 
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Posted By: NikkiB
Date Posted: 02 February 2010 at 7:07am
Couldn't agree more Raspberryjam Gosh, Dan and Milla have been through so much. It sounds as though they both needed urgent work done. Guess we are pretty lucky, with Jacob getting to almost 14 months before anything has to be done. I can understand why they would transfer us to our local hospital, but I really don't like that idea. The way I see it is on ward 23b the kids there there because of their hearts, on a childrens ward, the kids are generally there because they are sick. Jacob has chronic lung disease, which makes him very prone to catching viruses which will lead to chest infections. Don't really want that after having OHS. I guess all I can really do is voice my concerns and 'go with the flow'. We are very lucky, DH, DS and I stay at the Ronald McDonald House (when one of us isn't staying on the ward). The RMH is a fantastic facility. We spent a total of 2 months up in Auckland last year, I couldn't have done it if I didn't have my little family close by. ------------- A very lucky mummy to two gorgeous boys: RB 3/10/2008 JB 29/12/2009 |
Raspberryjam wrote:Posted By: Raspberryjam
Date Posted: 02 February 2010 at 2:56pm
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This is my girl not a week after her 6 month op - home again! ------------- http://lilypie.com]
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Posted By: NikkiB
Date Posted: 02 February 2010 at 6:16pm
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Oh, what a cutie I'll try and get my A into G and post a pic of Jacob. ------------- A very lucky mummy to two gorgeous boys: RB 3/10/2008 JB 29/12/2009 |
Posted By: NikkiB
Date Posted: 04 February 2010 at 7:35pm
Here's a photo of Jacob on his first birthday
 ------------- A very lucky mummy to two gorgeous boys: RB 3/10/2008 JB 29/12/2009 |
Posted By: Raspberryjam
Date Posted: 04 February 2010 at 7:48pm
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Oh Nikki my face just lit up when I saw that - what a gorgeous little boy!! ------------- http://lilypie.com]
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Posted By: NikkiB
Date Posted: 04 February 2010 at 8:19pm
Thanks, I think so too lol 
We're getting closer and close to his op and I'm feeling really positive about it all. I'm sure I'll go through ups and downs before the big day. ------------- A very lucky mummy to two gorgeous boys: RB 3/10/2008 JB 29/12/2009 |
Posted By: Raspberryjam
Date Posted: 04 February 2010 at 8:29pm
Im so glad your feeling good about it, I promise you these people are amazing!!! Jacob is at such a great weight for this and obviuosly has a wonderful will to live, Im sure thats because his mummy and daddy love him so much. I really believe that helps and your positive attitude will keep him in high spirits Who is your lead cardiologist and your surgeon? ------------- http://lilypie.com]
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Posted By: NikkiB
Date Posted: 05 February 2010 at 6:52am
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Thanks Raspberryjam Jacob certainly seems to have a very strong will to live
Nigel Wilson is our lead cardiologist and it looks like Kirsten Finucane is calling all the shots about the upcoming catheter and surgery - so hopefully she is the surgeon. ------------- A very lucky mummy to two gorgeous boys: RB 3/10/2008 JB 29/12/2009 |
Posted By: Raspberryjam
Date Posted: 05 February 2010 at 8:11am
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Oh Nigel is just lovely, he diagnosed us, but Tom is our lead.
Liz and Kirsten are both in the top 10 in the world for childrens heart surgery - isnt that fantastic!! Dont know if you knew but Nigel lost his own son about 15 months ago, it was so sad, but he really does look after our kids like they are his own. Love your profile pic !! ------------- http://lilypie.com]
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Posted By: NikkiB
Date Posted: 05 February 2010 at 12:27pm
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Yes, I heard that about Nigel's son Nigel was very very empathic (sp?) when tell us about Jacob's short life expectancy. And then he was SO happy when they discovered they can hopefully repair his heart. We are certainly very very lucky with the team we've got up there - that's why I feel so positive, we couldn't ask for better.
Poor Nigel though, I understand it was due to cancer and his son ended up on Ward 23b  ------------- A very lucky mummy to two gorgeous boys: RB 3/10/2008 JB 29/12/2009 |
Posted By: fire_engine
Date Posted: 05 February 2010 at 1:51pm
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Poor Nigel. He's lovely (though he scares lots of doctors!). I'm under Jon Skinner who's OK but pretty black and white and very medical. We've seen most of the others - Clare, Jon Elliot, Liz - all of them were just fab. ------------- Mum to two wee boys |
Posted By: Raspberryjam
Date Posted: 05 February 2010 at 2:23pm
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I think we must have seen them all too Flissty, I think in our first stay they all had a rotation.
What I like about Jon skinner is that he is black and white - no fluffy stuff - just tells it like it is. Milla was admitted for constipation - I was fuming!! Id already had 4 months at home caring for this fragile baby who had had no complications and they stick us in for that - he walked in - took one look at her and said take that tube out - she is obviously eating and go home - Awesome!! Tim is fab too, really articulate - dosent speak to you like your stupid - obviously after being in there so often you understand most things that are going on, although Id rather not no a bloody thing!! When are you back? Are you in auckland ? ------------- http://lilypie.com]
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Posted By: fire_engine
Date Posted: 06 February 2010 at 5:22pm
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We're back in July. Yep, we're in Auckland. have to say, I'm pleased we're here. We've had several trips to ED (that have turned out to be nothing) but it's great to see a familiar reg or consultant pop down and say "it's nothing cardiac, it's just a virus". I feel stoopid, but safe! ------------- Mum to two wee boys |
Posted By: Raspberryjam
Date Posted: 06 February 2010 at 7:03pm
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Daniel is very cute. I was gonna say we could catch up for a coffee, we are due back in july too, but Im also due to have a baby in july so not sure how that will pan out! ------------- http://lilypie.com]
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Posted By: MummyFreckle
Date Posted: 06 February 2010 at 9:44pm
I  that pic of "our" gorgeous Jacob x x x x x x Cant wait to catch up when you come up Nikki - I know its going to be a super tough time, but all Jacobs Auckland "aunties" are ready to support you all!!
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Posted By: DaisyAngel
Date Posted: 06 February 2010 at 10:49pm
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Hey Everyone Hugs to you all - it always brings a tear to my eye reading about other heart children What cute strong babies you all have Roman is also a heart child - he had his open heart surgery when he was 4 1/2 months old. He has APW - Aorto Pulmonay Window. As a result of the APW he also had Pulmonary Hypertension. Bascially he had a large hole between his aorta and pulmonary artery which then pumped high pressured blood meant for the body into the lungs instead of the low pressured blood that the lungs should receive. So his heart and lungs were working overtime, thus why his heart was enlarged and his lung tissue hardening. The surgery was high risk but also "simple" - they put a patch over the hole We had Kirsten Finucane as his surgen - what a We have John Stirling as our Lead Cardiologist, and Tom Gentles as our Lead Consultant. Roman spent 4 days in PICU, then 3 days in HDU, then 8 days in our ward room. Everyone in PICU was good but a nurse called Liz was fantastic - she really went the extra mile and helped me "feel useful/needed" again - previously all I was allowed to do was just sit there watching him all drugged up and wires etc everywhere feeling useless & the nurses would just sit there watching him, giving more drugs and filling out their sheets - but Liz let me wipe him down with flannels to "bathe him", she let me feed him though the feeding tube, she told me about the journalling box (PICU has a journalling box at reception that is avaiable to parents to use with journal book, stickers, pens etc ) - it actually really helped me to process and when Roman is older we can use it to show him what happened to him (I collected xrays, results, tubes, bits & pieces - she really helped me during that difficult time. While he was in PICU they did several more chest xray's and saw that he had developed Pneumonia in his lungs, and his left lung had collasped. Kirsten was very blunt and said he was a lucky boy, if he didn't have the operation when he did he would have died - as the Pneumonia would have been too much for his already overworked heart & lungs.... He was such a brave little boy all the way through, just took it all in his stride - he is our strong little warrior
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Posted By: Raspberryjam
Date Posted: 07 February 2010 at 10:25am
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Hi angelina, was liz an older lady with grey hair in a bob? An absolute angel. She was the wonderful lady who saved our Milla when she arrested at 4 weeks. She was sooo lovely. Another lady Evie was also our saving grace.
Look at that little boys grin!! I bet your so proud of him!! Are you planning a huge celebration for his 1st birthday? ------------- http://lilypie.com]
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Posted By: DaisyAngel
Date Posted: 07 February 2010 at 12:02pm
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Yip that sounds like Liz
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She was an angel too when Roman had several pulmonary hypertensive crises. Here's a pic of her 
Posted By: NikkiB
Date Posted: 07 February 2010 at 12:18pm
Thanks SS  I know I'm extremely lucky to have so much wonderful support in here. Just think, if Jacob wasn't who he is, then we may not have meet all you lovely Auckland aunties.------------- A very lucky mummy to two gorgeous boys: RB 3/10/2008 JB 29/12/2009 |
Posted By: NikkiB
Date Posted: 07 February 2010 at 12:27pm
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Hi Angelina
Gosh Roman sounds like a little fighter too! His first birthday will certainly be worth some celebrations!!!! Gorgeous, checky grin! You must be so proud of him. Liz looks very familar, but we haven't had her. I can't remember the names of the nurses we had, but they are all so lovely down in PICU. It seems like pneumonia is common in PICU. With Jacob's last catheter study, he got strep pneumonia and was very very ill, giving us such big frights (again! - he did that when he was first born too). The doctors and nurses tend to 'freak out' a bit down here when I take Jacob to hospital. They aren't use to dealing with heart babies so become very paranoid. They generally admit us straight away, then they do chest xrays etc. Must be nice being in Auckland where all the specialists are - probably gives you a lot more confidence. ------------- A very lucky mummy to two gorgeous boys: RB 3/10/2008 JB 29/12/2009 |
Posted By: DaisyAngel
Date Posted: 07 February 2010 at 1:50pm
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Yeah we are having a big party to celebrate I must admit It is a relief/comfort having Starship in AKL - but our local hospital is Waitakere Hospital, they have been involved in his care as well and have been good/helpful too Is anyone going to the International Congential Heart Day on Valetines Day that Heart Children AKL is putting on? St Heliers Bay Beach Reserve 4-6pm -------------
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Posted By: Raspberryjam
Date Posted: 07 February 2010 at 4:00pm
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Wow, you guys must have been terrified with the pneumonia - knock on wood we havent had it - its great that you have strong little boys!!
Yes thats her, she is just such a blessing to that place, Miles too. my dh found him fab down there - bit of manly support. I wasnt going to the beach day , i think we are busy actually We take Milla to north shore occasionally , they dont freak out about heart kids, or admit us ever - its great - they just treat her for whatever we take her in for. Milla has very obvious signs when its cardiac, and thank fully has never 'misbehaved' outside of surgery ------------- http://lilypie.com]
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Posted By: NikkiB
Date Posted: 13 February 2010 at 8:21am
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Do you guys try to go to the CH's coffee groups? I've probably been to a handful, but I must make more of an effort to go to more this year. The coffee groups I have been to have been very informative and encouraging (particularly regarding tube feeding) ------------- A very lucky mummy to two gorgeous boys: RB 3/10/2008 JB 29/12/2009 |
Posted By: Raspberryjam
Date Posted: 15 February 2010 at 6:18pm
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I dont attend anything like that, I have run into some really negative people along the way and just dont have time for that. I have met some wonderful people just by chance and am happy to leave it at that
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Posted By: NikkiB
Date Posted: 18 February 2010 at 8:22pm
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Looks like Jacob's surgery has already been pushed out to next Friday (its only been pushed out by one day - I hope this isn't a sign of things to come )
*drums fingers* the waiting is driving us insane ------------- A very lucky mummy to two gorgeous boys: RB 3/10/2008 JB 29/12/2009 |
Posted By: Nikki
Date Posted: 18 February 2010 at 9:50pm
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Hi all, I have a heart baby too. Brings tears to my eyes reading all the stories. I know how you feel Flissty about feeling like a bit of a fraud as Jake doesn't have on-going issues --- but we certainly went thru h#ll at the time!
He was diagnosed at 3.5weeks (no indication earlier, so a real shock!) and had open heart surgery at exactly 6wks, we'd been in hospital waiting for him to gain weight but he was still at his birth weight so they couldn't wait any longer. He had a large VSD and faulty tricuspid valve (plus another small hole and enlarged heart due to the blood pressure/VSD). Kirsten was the surgeon and Clare is our Cardiologist. We only spent a week in hospital after surgery (they didn't transfer us to waitakere, but he was too young to be immunised so that could be why) but they only really discharged him as they needed the bed, cos he still hadn't gained weight (we had a community nurse daily for a while). Those daily weigh-ins in hosp were so stressful!!! I think cos I was BFing I felt so responsible for him not gaining weight! He spent 2 days in intensive care and less than 48hrs in HDU then back to the ward and BFing. I had planned to go to the valentines day thing - but DH had food poisoning! I think it was rainign anyway. I've been to a few of the things they have - zoo, motat, easter egg hunt etc. And I did try one of the NS coffee groups at first but the person in charge didn't turn up and never textd me back when I asked when they were next on! So there was only me and one couple there. Good luck for the surgery!!! ------------- DS (5yrs) and DD (3yrs) |
Posted By: NikkiB
Date Posted: 19 February 2010 at 6:54am
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Thanks Nikki Ha! Another Nikki with a little boy Jacob, with a heart defect!
Pleased to hear Jakob is doing well now. Must have come as a real shock.....not a very nice way to start motherhood. Shame about the coffee groups. Our Wgtn person is excellent with morning teas and keeping in contact. Jacob is fully tube feed at present, so at least that is one thing we don't have to worry about at the moment - him feeding properly before they discharge us. He's only had to be tolerating his food before we've been discharged from hospital before. Mind you, I can't wait until he's at the stage where he is well enough and fat enough for us to try to get rid of the ng tube. ------------- A very lucky mummy to two gorgeous boys: RB 3/10/2008 JB 29/12/2009 |
Posted By: NikkiB
Date Posted: 19 February 2010 at 6:03pm
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We've just received another call from Starship. There is a good chance that we will be sent home after Jacob's catheter study and will get a call later for us to go back up for his surgery They've had a few babies born who need urgent surgery. At least Jacob isn't classed as urgent. I'm gutted, but I also feel for the families that are in the 'urgent' basket. ------------- A very lucky mummy to two gorgeous boys: RB 3/10/2008 JB 29/12/2009 |
Posted By: Raspberryjam
Date Posted: 19 February 2010 at 6:06pm
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Oh hun, thats disappointing, its quite a battle of the mind preparing for something so huge, but like you say , and I completely agree, at least its not your babe who is critical
We were sent home three times, so it sounds not uncommon, fingers crossed its sooner rather than later aye ------------- http://lilypie.com]
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Posted By: NikkiB
Date Posted: 19 February 2010 at 6:19pm
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Thanks Raspberryjam. 3 times...wow...how do you get your head around that? ------------- A very lucky mummy to two gorgeous boys: RB 3/10/2008 JB 29/12/2009 |
Posted By: Raspberryjam
Date Posted: 19 February 2010 at 10:35pm
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Um I guess we just focused on the positive that it wasnt our baby in trouble that time, that was at her 6 month op. The first time was the worst they didnt call her off til after 11am and we had been there since 6 that morning with a very hungry baby!
I dont think its so bad when you live in auckland. Its a pain to wait but they wont put your babe at risk. Im really looking forward to you being so excited about how much better your lovely Jacob will be!! Its like you can finally breath out ------------- http://lilypie.com]
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Posted By: NikkiB
Date Posted: 20 February 2010 at 7:05am
I can't wait either! I can't wait to see that different little boy ------------- A very lucky mummy to two gorgeous boys: RB 3/10/2008 JB 29/12/2009 |
Posted By: Nikki
Date Posted: 20 February 2010 at 10:17am
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So sorry to hear about the delay. We were mucked around alot while in hospital but didn't have to go back for more surgery thankfully, so I can only imagine how hard it is when there is a delay once you've prepared mentally for it.
Weird re the Nikki / Jacob / Jakob / heart defects!!  ------------- DS (5yrs) and DD (3yrs) |
Posted By: Raspberryjam
Date Posted: 20 February 2010 at 1:12pm
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We have an anatomy scan on Monday, Im so fricken scared!!
We got them to check that bub had 4 chambers at our NT scan - seems that part is ok, just hope all the right connections have been made!! ------------- http://lilypie.com]
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Posted By: fire_engine
Date Posted: 20 February 2010 at 2:56pm
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RJ, how did you arrange the fetal echo? Did your MW refer you? ------------- Mum to two wee boys |
Posted By: Raspberryjam
Date Posted: 21 February 2010 at 7:22pm
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Heya, actually Milla had a cath in dec and I just told Heather I was pregnant and she said make sure you get a fetal echo here and yeah the MW will just send through a ref. Must say its huge piece of mind knowing they will have a look, even if we are having a anatomy at insight
Just got a letter in the post yesterday to say Milla has clinic on the 17th of March - may be on the ward when your up this way NikkiB ------------- http://lilypie.com]
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Posted By: MummyFreckle
Date Posted: 22 February 2010 at 8:05am
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Thinking of Nikki & Jacob today getting his catherter study done.....
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Posted By: Nikki
Date Posted: 22 February 2010 at 9:29am
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My GP (LMC) sent me for the extra scan at ak hosp when I was pregnant with Morgan. I couldn't relax about the pregnancy til that was over!
Thinking of Nikki and Jacob too! ------------- DS (5yrs) and DD (3yrs) |
Posted By: Raspberryjam
Date Posted: 22 February 2010 at 10:20am
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Have just had our anatomy scan and we are having a healthy little girl - so excited. But yes, I will be even more so once the baby is born - and its really true!!
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Posted By: Nikki
Date Posted: 22 February 2010 at 2:13pm
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Yay, thats great news raspberryjam! Such a relief isn't it. ------------- DS (5yrs) and DD (3yrs) |
Posted By: Raspberryjam
Date Posted: 22 February 2010 at 4:17pm
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Yeah it is, I couldnt have gone through all that again. Im really looking forward to having my own newborn! ------------- http://lilypie.com]
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Posted By: Nikki
Date Posted: 22 February 2010 at 8:33pm
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Know what you mean, I thought for many months that there was no way I could have another child with the extra risk factor. Then when I got pregnant I thought there is no way I can have the child and go thru all that again (hard for someone who hasn't been there to understand!) and finally could "enjoy" the pregnancy once we got the all clear. the first couple of months I still looked for signs every now and then - mainly I think cos the midwife kept bringing it up!! (trying to make me feel better I'm sure).
It certainly was a breeze having a"normal" newborn after all the drama with Jake!!!! ------------- DS (5yrs) and DD (3yrs) |
Posted By: MummyFreckle
Date Posted: 22 February 2010 at 9:15pm
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Hi ladies, update from NikkiB -
"Catheter went well. Jacob good. Prob delayed op for another 6-12 months as J classed as stable, but will find out more on wedsnesday" Nikki asked me to update her OB friends, so thought I would come and update you lovely ladies too!
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Posted By: Raspberryjam
Date Posted: 22 February 2010 at 9:18pm
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Im excited that I should be able to bring this one home after a few days, we spent 8 weeks in hospital when Milla was born, by the time we bought her home she had lost her new born features etc.
Im sure if we had to do it all again we would Nikki, look at what we would have missed out on had we made different decisions, but god its great to not have to! ------------- http://lilypie.com]
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Posted By: Nikki
Date Posted: 23 February 2010 at 8:29pm
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Thanks for the update Simsam!
Yes it was nice to bring Morgan home and not have to go back to hospital for a month! We couldn't make any different decision as we didn't know there was a problem til he was 3.5wks, but would not change him for the world now of course!!! (Although would love to have not gone thru all the stress of course!)------------- DS (5yrs) and DD (3yrs) |
Posted By: Raspberryjam
Date Posted: 23 February 2010 at 10:00pm
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Oh wow, thats so common its scary!!
We were diagnosed at 19 weeks in utero - We are delighted we didnt entertain the thought of termination, although it was offered - But - Id change Milla in a flash!! poor little thing having to deal with this bloody thing ------------- http://lilypie.com]
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Posted By: NikkiB
Date Posted: 25 February 2010 at 7:44pm
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Congrats on another little girl RJ So pleased the scan went well
I was lucky, I had the opposite to you guys. My first DS is completely healthy, so I had that great experience of taking my brand new baby home. Our trip to Akld was very quick. Catheter went well on Monday (even if it did take 4 1/2 hours  ). They were able to coil off one of Jacob's MAPCAs that had high pressures. His other MAPCAs have normal pressures so they've pushed his surgery out to within a year. We aren't too disappointed about this, as Jacob can only get bigger and stronger - which will be great for surgery. It was lovely seeing familiar faces on Ward 23b and back at the Ronald McDonald House.
Its good to be home though....far too hot up in Akld for us Wellies ------------- A very lucky mummy to two gorgeous boys: RB 3/10/2008 JB 29/12/2009 |
Posted By: Raspberryjam
Date Posted: 26 February 2010 at 9:38am
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Thanks!,
Great to see your home Nikki! And had some success. Would have been nice to be past the surgery bit Im sure but the size thing makes such a difference to their recovery etc. Are you finding Jacob has responded well to what they did in cath? ------------- http://lilypie.com]
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Posted By: NikkiB
Date Posted: 26 February 2010 at 10:39am
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The only difference I have noticed is that he can now saturate slightly higher, which is a good thing
Have you relaxed a little bit more about this pregnancy now and hopefully enjoying it a bit more? ------------- A very lucky mummy to two gorgeous boys: RB 3/10/2008 JB 29/12/2009 |
Posted By: Raspberryjam
Date Posted: 26 February 2010 at 11:01am
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Thats great!!
Um yeah I think so , maybe will be better after a fetal echo and if time would just hurry up!! I think really its mostly normal mummy fears ------------- http://lilypie.com]
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Posted By: Nikki
Date Posted: 26 February 2010 at 9:27pm
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Great to hear it went well Nikki!
Of course I would change the heart defect thing if I could (not that its an issue now, but to not go thru that couple of months would have been wonderful), but I wouldn't change Jake as hes such as awesome kid, and I'm so glad I didn't have the option of termination. although I would much rather have known when pregnant what I was in for, instead of the shock we had. If we had found out that there was a problem with Morgan, I would have really struggled with what to do to be completely honest (horrible as that sounds). When she was born I was all ready to ship her off to starship for tests just to be sure, but the docs all assured me there was no need! ------------- DS (5yrs) and DD (3yrs) |
Posted By: Nikki
Date Posted: 26 February 2010 at 9:29pm
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oh Nikki - I think it would be harder going thru it with no2, as you still have no1 to worry about when you have all that time in hosp, stress etc. ------------- DS (5yrs) and DD (3yrs) |
Posted By: Raspberryjam
Date Posted: 26 February 2010 at 10:48pm
Sorry Nicki, I didnt mean to make it sound like you meant anything but that, of course you would change that bit. I actually think it must be very hard to think you have a healthy babe and then all hell breaks loose. I agree with on the struggling bit with number 2, I cant imagine what I really would have done if we were faced with this issue again. We got this ones heart checked at the 12 week scan to check for 4 chambers, that would have been a huge deal to not see them. But I dont know it it would be a deal breaker without being in that situation. I think there are some situations I could cope with and others not. There arent many heart defects worse than truncus, but then you never no what that child will be like either. I also think Nikkib, with 1 babe to care for already, having number 2 be unwell must be soo hard, for all the normal reasons and the juggling act too ------------- http://lilypie.com]
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Posted By: NikkiB
Date Posted: 27 February 2010 at 6:44am
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It was very difficult at times (and still is), but having Rex with us, brought us back down to earth and I think we were able to cope better because of him IYKWIM? Especially at the beginning when things were so touch and go with Jacob, Rex would still be able to make us smile and laugh. On the other hand, I use to be envious of other mothers that didn't have another little oneto look after.
I've always got my very positive experience of having a healthy, happy pregnancy, birth and baby with Rex, to fall back on. Obviously, I would wish that Jacob didn't have his health issues, but in saying that, I don't think he'd be the very special boy he is, if he wasn't who is he. Gosh, I know its early, hope I'm making sense ------------- A very lucky mummy to two gorgeous boys: RB 3/10/2008 JB 29/12/2009 |
Posted By: NikkiB
Date Posted: 27 February 2010 at 6:47am
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Also, Rex and Jacob are already so close....I just love watching my boys playing and interacting together
We have never stopped Rex from seeing Jacob, no matter how sick Jacob has been. I think this has helped Rex understand that Jacob isn't healthy and has allowed Rex to have more empathy towards him. ------------- A very lucky mummy to two gorgeous boys: RB 3/10/2008 JB 29/12/2009 |
Posted By: Raspberryjam
Date Posted: 07 March 2010 at 7:46pm
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My step daughter pointed out to our girl that she had a bad mark on her yesterday, and she didnt have it. Milla was too young to care and just ignored her but wanted to throttle her!!! She is a nasty little thing at times and this really got my back up. I wish she was as lovey to her little sister as your eldest is Nikki
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Posted By: NikkiB
Date Posted: 08 March 2010 at 7:11am
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How old is your step daughter? Kids can be so nasty at times. If Milla can get through OHS, she can ignore silly comments like that.
I'd like to say that life is settling back to 'normal' again, but I've had DH off work since we got back from Akld....he broke his hand the day after we got home As you can imagine, I'm not getting much help around the house from him Today is his first day back at work...yipppee!
Jacob has come even further developementally since the cath. He is almost crawling   I think he'll be crawling today or tomorrow Not bad considering he is only 11 months corrected. We are now going to work on getting him off his ng tube and fully feeding. Its going to be a long hard road, as he isn't taking anything orally, but it will be so worth it.------------- A very lucky mummy to two gorgeous boys: RB 3/10/2008 JB 29/12/2009 |
Posted By: Raspberryjam
Date Posted: 08 March 2010 at 8:43am
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Heya, SD is 4. Milla didnt even understand her, but I did.
Rough about hubby , 3 bums to wipe aye mine did his ankle when I was 32 weeks with Milla, no fun!!
Thats awesome about wee jacob, How exciting for you. The whole NG thing is so tedious! We thought it would take ages for Milla to wean, but once she got the idea no tube happened really quickly, to our very happy surprise, so lets hope that happens for you too. He will be a big strong boy in no time! ------------- http://lilypie.com]
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Posted By: NikkiB
Date Posted: 08 March 2010 at 12:05pm
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Thanks for the words of encouragement. What age was Milla weaned off her NG tube? They are looking at slowly reducing his milk intake in the hope that Jacob will start eating more because he is hungry. I was hoping we could just pull the ng tube out and see how he goes (I was even prepared to go into hospital to have him on an iv drip if need be). I'm hoping it will be a lot easier than I think it will be. ------------- A very lucky mummy to two gorgeous boys: RB 3/10/2008 JB 29/12/2009 |
Posted By: Raspberryjam
Date Posted: 10 March 2010 at 12:50pm
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Sorry, I missed your reply.Um she was only 4 months, but it was really obvious that her appetite had increased and didnt take long at all for her to be on bottles and refusinf breast feeding.
You know your the mum and you know whats best for this. I wanted to do the same thing but our homecare nurse was like no no she is a bit light yet - she so wasnt - well not for her anyway. It just so happened we were on the ward for the night and Dr Skinner told us to take it out - i was stoked. Never looked back. I did offer her milk more often for a while though, so she wasnt puffed drinking a full feed straight away - so maybe you could do that. Or a friend of mine witha heart child too - her daughter just eats constantly it seems, just a little bit whenever she wants it. ------------- http://lilypie.com]
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Posted By: kiwi2
Date Posted: 10 March 2010 at 5:13pm
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Hey there
Another heart mum here. I too feel like I am a bit of a fraud as my daughter had a minor thing as far as hearts go. She also had a coarctation of the aorta with a bicuspid mitral valve that is fine at the moment. She was picked up at her 6 week check as having a heart murmor and was wrongly diagnosed at waikato as having pulmonary stenosis. They said come back in 5 years. We moved to the middle east when she was 4 so never went back as we were so reassured it was fine. Whilst in the middle east she went into heart failure and we took her to london to be operated on. This was on her 7th birthday. She is now 13 and giving me as much grief as any other teenage girl and if you walked past her in the street you wouldn't know of her heart issues. She won the 100m sprints at school and also 200m freestyle at swimming. She loves to go to the gym and run after school. People often don't beleive me when I tell them. She recently moved to a new school and it took me a few days to update the pe department and the nurse. I think the pe teacher was shocked as georgia doesn't let it affect her at all. We have just moved back to nz and have yet to get into the health system again. Not sure what the docs are like at waikato however after our past experience I am wary. If anyone has a good doc there please let me know. eta I also have two younger children with murmors. We had a 4d scan at the hospital when pregnant with the last and they reassured me her heart was all good. Nice to get those pics as well of her face. |
Posted By: Raspberryjam
Date Posted: 10 March 2010 at 5:39pm
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Welcome Kiwi2 sounds like you have had a very scary ride I dont ever think any one with a heart child is a fraud. Its bloody scary at times
Great that you have such a lovely girl with a drive for life Perhaps with your Doctor, you can get a GP to refer you back to starship for a checkup - I doubt you would have to do it more than twice a year just a thought ------------- http://lilypie.com]
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Posted By: NikkiB
Date Posted: 10 March 2010 at 7:46pm
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Hi Kiwi2, welcome back to NZ I (once again) agree with RaspberryJam, no heart mum is a fraud.
I love hearing stories like your daughters. For peace of mind, I'd also suggest you get a referral to Starship. At least then you know the best in the world are looking after her welfare. ------------- A very lucky mummy to two gorgeous boys: RB 3/10/2008 JB 29/12/2009 |
Posted By: Nikki
Date Posted: 10 March 2010 at 9:04pm
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Hi again - I keep forgetting to come in here! Had the new west auckland family support lady ring me today and remembered about his thread.
Welcome Kiwi2. I think you can feel like a fraud, cos as you learn more you realise there are so many others who have worse conditions and on-going problems. Even just reading about NG tubes etc, makes me realise how "easy" we had it compared to some ... Jakes was out pretty quickly after his op, I BF'd him about 4-5 days post surgery. (He liked BFing even when being tube fed!) So they were quite happy to take it out before we went home, cos I wasn't bothering with top ups all the time anyway. Yay for the developmental progress! And I think 4 year old girls suck (just listening to some of the comments they make at Jakes daycare). ------------- DS (5yrs) and DD (3yrs) |
Posted By: Raspberryjam
Date Posted: 10 March 2010 at 9:43pm
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Thanks Nikki
Milla loved breastfeeding too, even with an NG but she was to breathless to takea full feed, so still had to top up.. I think if the first surgery had worked we would have had it out sooner, but she was so little and they didnt think she would survive the next surgery (or til then for that matter) If you saw my girl you would never no she is sick - she isnt blue, ever, sats at 99, well covered, runs around like a mad thing, in fact her latest fun thing is to run around saying running or climbing up anything saying climbing Hate to say it, but your not frauds, and your a part of this club , but id rather you werent ------------- http://lilypie.com]
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Posted By: kiwi2
Date Posted: 10 March 2010 at 9:44pm
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Hi everyone,
Thanks for the welcome. I don't think we are considered "bad enough" for starship now. She literally is on one year checkups and it is just echo and ecg etc. It has been 13 years so hopefully things have changed. We do have insurance but nz insurance companies are a bit dodgy with the previous conditions. Her surgery and all her medical treatment in the states was covered by our insurance but nz insurance deems it as pre-existing. I might just call southern cross again to clarify as it just doesn't seem right. I have a 4 year old daughter and agree totally. They go thru that real mean phase of "your not my friend" etc. Luckily it doesn't last forever and boy the next phase of sulky teenager at 13 is worse beleive it or not. lol. My son was very full on as a toddler but so easy ever since. |
Posted By: Raspberryjam
Date Posted: 10 March 2010 at 10:07pm
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we just get echo and ecg every 6 months Kiwi.
The girl child thing is very hard when they arent your own, when they are like their mother and their mother isnt someone i would ever be friends with in real life - our kids are just so different, and although I appreciate DH is in a difficult position somewhat, the 4 year is old enough to understand that some behaviour is not acceptable - like hiting my precious baby girl - Im hopping by the time she is a tweenager she is too cool to spend the weekend with her dad - ------------- http://lilypie.com]
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Posted By: kiwi2
Date Posted: 11 March 2010 at 10:01am
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I can imagine raspberry that it is difficult with a mixed family etc. I was the child in one so although I haven't experienced the parenting factor of one I know some of the struggles. It is tough and I can sympathise with my stepfather alot now lol. As long as you set rules for your house and are clear on what is acceptable in your house then that is the most you can do really. Don't assume they know already as you can't be sure that the mum has the same views as you or the same parenting strategies. (probably different from what you said earlier about not being friends etc without this connection)
Maybe a sit down meeting with miss 4year old to discuss rules might be an idea. One thing that has always helped with my kids has been any rules had to be put up in writing or pictures so they had a visual. It was like a piece of paper that backed me up everytime I had to say no to them. I would send them to the fridge and ask them why I am mad. Best thing I ever did and since she is away from the house for the weekdays then it might be a refresher when she comes for the weekend. Also a way of giving you a break and not being the bad guy all the time by her telling herself what she did wrong. IYGWIM And having a heart child too. Big hugs. Life is never easy. |
Posted By: Raspberryjam
Date Posted: 11 March 2010 at 10:08am
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Thanks, the heart kid is easy, really. Wouldnt do it again, but now that she is older its easier to manage ------------- http://lilypie.com]
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Posted By: Nikki
Date Posted: 14 March 2010 at 10:07pm
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Kiwi2 - you shouldn't need insurance for any of the checks, it should all be free through the public system. you can't even have heart surgery for kids privately if you want to in nz, its all public.
Hope our girls aren't so painful when they're 4 raspberryjam! This has just reminded me Jake has a full check-up due soon. He had his last check about 15months and they said after that they'd wait til hes 3, as they didn't want to knock him out at that age when there was no indication anything was wrong (and by 3 they can sit still long enough). I think he'll have yearly checks after that til hes at school, then hopefully it will be less often. He runs around like a maniac too, you'd have no idea hes a heart child if you didn't see the scars. He was a runt for a long time but not anymore! ------------- DS (5yrs) and DD (3yrs) |
Posted By: Raspberryjam
Date Posted: 14 March 2010 at 10:20pm
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oh Nikki, i hope so too, Im having another girl so I might be in for a double dose
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Posted By: NikkiB
Date Posted: 15 March 2010 at 7:14am
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Good luck RaspberryJam, my fingers and toes are crossed that baby will be just fine. ------------- A very lucky mummy to two gorgeous boys: RB 3/10/2008 JB 29/12/2009 |
Posted By: fire_engine
Date Posted: 15 March 2010 at 8:41am
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Good luck RJ
My MW has said she's happy to refer for a fetal echo so that's all good. Not that a coarc is likely to be evident but this one's at risk of any left sided defect not just a coarc. We're on 9 monthly checks. We had a sedated echo six months ago and it was hell. Apparently Dan's the only under-2 they haven't been able to successfully sedate and he just went psycho - a 3 hour night terror basically. He wasn't on the planet and was so distressed. So the echo was pretty poor. We're back in July, probably about the same time as my echo. ------------- Mum to two wee boys |
Posted By: NikkiB
Date Posted: 15 March 2010 at 12:10pm
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Congrats Flissty All the best with this pregnancy.
Poor Dan, that sounds awful ------------- A very lucky mummy to two gorgeous boys: RB 3/10/2008 JB 29/12/2009 |
Posted By: Raspberryjam
Date Posted: 15 March 2010 at 2:00pm
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Oh man, Flissty that sounds soo scary! We had a sedated MRI and it was horrible , she was really fighting it, but nothing like that - god hope you dont have to do that again anytime soon
Well - this time - we made a healthy baby!! no missing bits, all in the right places, everything right according to growth!! They said they cant promise no VSD - but I was like its ok, all good we will deal with that if it happens. We arent really at risk of anything in particular - could have been anything with the nature of Millas defect but so far so good!! ------------- http://lilypie.com]
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Posted By: NikkiB
Date Posted: 15 March 2010 at 7:46pm
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fantastic news RJ ------------- A very lucky mummy to two gorgeous boys: RB 3/10/2008 JB 29/12/2009 |
Posted By: Nikki
Date Posted: 16 March 2010 at 2:04pm
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I typed a response this morning and Morgan banged on the keyboard and it was gone! So I decided I'd better give her some attention!
Congrats Flisty!! And thats great news RJ!!!! You must eb so relieved!! We didn't have any specific risk either, just increased risk generally. ------------- DS (5yrs) and DD (3yrs) |
Posted By: Nikki
Date Posted: 16 March 2010 at 2:07pm
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I should also say, I'm so glad they decided not to sedate Jake at 15months (the last sedation he had was MRI at about 6months) ... I'm not really looking forward to the 3 year check though. He may be CAPABLE of lying still long enough now, but will he WANT to?!?!!! He can be pretty stubborn and difficult if he doesn't want to do something, especially if he gets shy/scared! ------------- DS (5yrs) and DD (3yrs) |
Posted By: kiwi2
Date Posted: 16 March 2010 at 3:52pm
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Glad the fetal echo went well. I remember what a relief that was that there wasn't anything major.
As for the sedated echos I remember my youngest (she just has a murmor like her brother which is innocent) getting a regular sedated echo at 1 year and she acted like she was possessed. Wouldn't wish that on anyone. The cardiologist called the next morning to check on us as she hadn't seen anything like it before. Apparently we had kept her from sleeping well that night whereas we were all so exhausted from the ordeal we slept like babies. lol. |
Posted By: NikkiB
Date Posted: 22 March 2010 at 8:23pm
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Awww, I'm not looking forward to future echos, hope J doesn't have to be sedated.
I can hardly believe it, but J has decided to eat! I don't know why he has decided to start eating now, and I'm hoping he'll continue to go forward....but wow! There is light at the end of the tunnel! ------------- A very lucky mummy to two gorgeous boys: RB 3/10/2008 JB 29/12/2009 |
Posted By: Raspberryjam
Date Posted: 22 March 2010 at 8:31pm
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Go Jacob - thats awesome Nikki - well done you!! ------------- http://lilypie.com]
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Posted By: DaisyAngel
Date Posted: 22 March 2010 at 9:50pm
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Yay!! Well done Jacob!! -------------
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Posted By: Nikki
Date Posted: 25 March 2010 at 9:03pm
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Oh yay, thats great Nikki!!!
We just got our appt for april ..... I thought it wasn't happening til after he turned 3 (late june) .... !! ------------- DS (5yrs) and DD (3yrs) |
Posted By: Raspberryjam
Date Posted: 25 March 2010 at 9:29pm
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you may be surprised Nikki..
We had ours yesterday and Milla was an angel!! She lay still for her echo, rolling over and lifting her chin with no problem..even said thank you marcus at the end. Stood up all proud to be measured - the first time she has been tall enough to do it against the wall!! happily got weighed, offered her finger to Bing for sat check and blood pressure and them watched without fuss at her ecg! sometimes she is such a trooper!! soo she has more narrowing in her SVC - which they cant keep playing with - so will do an MRI at the end of the year Heart is great. Still looking at 4 and a half for next bypass weight and height - was born below the 15th now above the 50th!!! SO excited - my beautiful girl - Docs were really pleased she is so well all things considered ------------- http://lilypie.com]
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Posted By: NikkiB
Date Posted: 26 March 2010 at 8:00am
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well done Milla You must be so pleased RJ.
Good luck for your next appointment Nikki. ------------- A very lucky mummy to two gorgeous boys: RB 3/10/2008 JB 29/12/2009 |
Posted By: Nikki
Date Posted: 29 March 2010 at 10:36pm
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Oh thats great Milla was so good at her appt. I'm hoping I will be pleasantly surprised. Fingers crossed. ------------- DS (5yrs) and DD (3yrs) |
Posted By: DaisyAngel
Date Posted: 31 March 2010 at 10:12pm
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Yay well done Milla Rasberry Jam - we were also at Starship Heart Clinic on the 24th for Roman's check up - what time were you there? We were there from 1.45pm till 4.45pm Good luck for your next appointment Nikki
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Posted By: Raspberryjam
Date Posted: 01 April 2010 at 10:54am
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Oh Angelina, you must have been there at the same time as us, 12.45 til about 3.30 - My little monster would have been running around all over the show! Im trying to place you but baby brain - I cant think who you could have been! ------------- http://lilypie.com]
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Posted By: DaisyAngel
Date Posted: 01 April 2010 at 10:21pm
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hmmm now I'm trying to place you and Milla... -------------
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Posted By: Raspberryjam
Date Posted: 02 April 2010 at 1:33pm
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oh , I cant view that for some reason??
OOh I still cant rememeber you.. Yes I saw that woman. I am quite pregnant, was wearing a black and white top and 3/4 demin pants - I think i had my hair down, dark brown - looking extremely tired so i was told that day!@ ------------- http://lilypie.com]
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Posted By: Raspberryjam
Date Posted: 02 April 2010 at 1:42pm
here is an older pic of me and milla - but my hair is a bit shorter now and this is my monkey a couple of weeks ago 
sorry they are huuuge!! I should have done thumbnails
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Posted By: NikkiB
Date Posted: 02 April 2010 at 2:10pm
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cool photos RJ ------------- A very lucky mummy to two gorgeous boys: RB 3/10/2008 JB 29/12/2009 |
Posted By: Nikki
Date Posted: 02 April 2010 at 3:42pm
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Aww, Milla is cute!! Its kinda weird seeing the scar on other kids. I'm so used to Jake now I barely see it, but others notice it with his top off.
Our appt is tues arvo. So bummed that Claire will only see them on tues arvos - Jake sleeps 2-3 hours in the arvo and he goes to daycare tues/thurs (i'm back at work the next week on those days so moved the appt forward) so it really doesn't work for him - and I'm paying for daycare that we won't use. and then they will expect an over-tired grumpy toddler to lie still for 30mins - can't see it happening!?! anyone going to the easter egg hunt on mon at cornwell park? or the new west ak coffee group later in the month? ------------- DS (5yrs) and DD (3yrs) |
Posted By: Raspberryjam
Date Posted: 02 April 2010 at 8:16pm
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stink Nikki, does he have to see Claire? ------------- http://lilypie.com]
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Posted By: DaisyAngel
Date Posted: 02 April 2010 at 9:08pm
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awww what a little cutie Milla is I guess we were both so busy watching our little monkey's we didn't see each other! It sucks doesn't it - paying for daycare and not using it - there has been countless times when Roman has been sick and been away from daycare for most of the week |
Posted By: DaisyAngel
Date Posted: 02 April 2010 at 9:35pm
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Posted By: Nikki
Date Posted: 02 April 2010 at 10:08pm
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Aww, nice pic. I can't do pics anymore as I didn't go into photobucket for so long they threw me out, haha, and not techno-savvy enough to work out how to do it any other way! I'm Nikki Davy on Facebook though, heaps of pics there! May see you at the easter egg hunt if we make it. Its a bit hard, as Jake sleeps most of the afternoon and its at 2pm, but we may hold him out for the day and go.
Yeah Jake had heaps of time off daycare his first winter being sick all the time, much better last year though, and hes only in 2 days at the mo (til june) so hes barely missed a day in over a year now. ------------- DS (5yrs) and DD (3yrs) |