30 Sep 2008

The Day That Changed A Life

Before I begin this post I need to explain ,why all the details. This is my journal for the girls and I want to capture as much of yesterday as I can so that Rose will know what happened since she won't remember any of it.

Rosie looking around and summing the place up. Ignorance is bliss!


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Checking in that direction too.


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Checking over there


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YO! Is that a white coat that I see?


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Rosie and I left the house early, very early, and headed to the hospital. After we were registered we were sent to pre-op registration where we waited for Jacob. He had driven Lily to school and zoomed to get to us before Rosie went to sleep. He literally arrived just as they were calling her name. So we all walked together into the pre-op area. This part was wonderful as they had loads of toys and things for the kiddies to play with. Rosie and her new found friend, Will, were having a blast but then Will fell asleep very suddenly and Rosie took note NOT to drink what he was drinking.

Hey, I like this place but what happened to Will?


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We got her changed into her little gown and they took her vitals etc. We were so shocked because she didn't cry. If you know Rosie you know that this is huge news. The nurses took their time and talked with her and made everything fun and she loved it. Loved it that is until she got the same drink that Will got and she wasn't going for it. This is also where we met with the anesthesiologist and the surgeon and their respective nurses. Everything was explained, we signed the papers and felt so fortunate to have this team on our side.

Why did you make me drink that stuff. I am NOT happy about it.


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Repeat: NOT happy about it.


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Whoa Mama, I just saw a pink elephant and it is funny, really funny. In fact I just cannot stop laughing. Mama, why are you all blurred? Is Will having this much fun?

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I am feeling very woozy Daddy and I can't see straight anymore but it is fine...I am loving it.


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She laughed and giggled the whole way to the cath lab and then she was so whacked that she couldn't even speak. It was so great because she was clueless. The sedative that they used causes mild amnesia so she truly cannot remember what happened. (Somedays I think Jacob must put some in my coffee)


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We were with her right up until the second she fell asleep. She didn't even care when they put the mask over her face. Our Dr.'s were really wonderful. We kissed her goodbye, and I got a little teary eyed and then we were escorted out of the operating room. We went to the cardiac waiting area and the nurses rang us to see how we were and to to tell us that Rosie was fine. It seemed like 10 minutes later that the surgeon and the nurse appeared to tell us that we were needed down in recovery as she had just woken up and was furious. They also explained that everything went well and she was fine. She needed two coils and not one to plug up the hole. We were warned that she might be really mad when she came too but we were not expecting her to be that mad. We ran with the surgeon into recovery and I could hear a child screaming but I knew it wasn't Rose cos the voice was too deep. Wrong! It was Rose and she was hoarse. She had every wire and tube imaginable attached to her and she was flailing her arms around. A nurse was trying to give her a pacifier which was making her worse. They listened to us before they took her away and I was happy to hear them calling her Qi Qi. The nurses told me that I had to hold her leg straight and still and they were moving her to my arms to see if that would help. At that point the doctor administered Demerrol and she went right back to sleep. The second time she came to she was fine. A little stoned but OK.

One strong little girl with a very healthy heart...and lungs!


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I don't think she knew we were there at this point


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Minutes after she came too Jacob had to run and get Lily. Here we are much later all together again.


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This is the balloon dressing that they used to keep pressure on the wound. It is an amazing device and makes it so much easier to handle little ones after something like this.

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I was really happy that the wires, IV's etc didn't seem to bother her. She accepted that they were there and dealt with it.


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Later in the evening when Daddy and Lily had gone home she perked up so I gave her some snacks and sat her down to watch Elmo.


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She was exhausted by about 7 so we called it a night. Her heart monitor was on the fritz and beeped every 3 minutes so I had to get up and turn it to silent but 3 minutes later it would beep again. She woke again around 2.30 so I played with her for a while until the nurse said she couldn't be in the chair with me for safety reasons and had to get back in her crib. She went right back to sleep and I watched more t.v and waited for the nurses hourly visit. I didn't sleep at all. Not cos I was worried, because honestly I wasn't but because of the bloody shrieking shrew of a monitor!

She woke up for the day at 5 something and immediately looked at her purple taped hand and announced, "off'', ditto with the blood pressure cuff, the oxygen-monitor and the chest stickies. I explained that she had to keep them onand she repeated "off". This time it was an observation as she had removed the oxygen monitor from her thumb. I tried so hard to get it back on but I couldn't cos she was fighting. At this point I figured that she was obviously fine so I tossed it over the crib side. By now the heart monitor is having a real fit and shrieking in a whole new tone.

She was her normal self from the moment she woke up and she ate a great breakfast and we waited for the nurses to free her of her machines and give us our eviction notice.


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She was anxious to explore so we hit the hallways


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Jacob showed up around 9.30 and we were out of the room getting her post-op echo done. He and Lily, (Lily had no school today because it is a teachers work day) came to the room and couldn't believe that Rose was fast asleep. Jacob asked if they had drugged her and was surprised to hear that she was calm and enjoying it and just fell asleep. After that we headed back up stairs and waited forever to get evicted. We spent so many hours in the toy room and walking the halls. The orders finally came and we said our thank you's and left.

Rosie has no restrictions but cannot be submerged in water for 3 days and cannot get too crazy. But she was silly all morning and the nurses kept saying it was fine. She went right to sleep when we got home and woke up cranky....very, very, cranky and stayed that way until bedtime. She is exhausted.

Rosie was a trooper. She amazed us with her behaviour and won the hearts of all she met. Lily was a champ and took it all in her stride. We spent alot of time explaining all the details to Lily in a 6 year old format and it helped her. She did great.
We cannot say enough positive things about Miami Childrens. My only question is this: Everything there is geared for kids, everything. So why when you order room service (that is what it is, they cook to order there and you eat when you want!) do they serve food to tiny kids, and they have all there stats in the computer cos it comes with a print out attached to it, do they use full size utensils?

Below are 2 photos of Rosies heart.
Before Shot
In this photo you can see what looks like a stem and then to the left is what looks like a leaf on the stem. The stem is the pulmonary artery and the leaf is blood. Blood that shouldn't there. It is leaking back into the ventricle.
This is the before shot.


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After Shot
in this photo you can see the "stem" but it doesn't have a leaf attached. You can clearly see where the leaf has been pinched off. Those are the 2 coils that were inserted and they have clogged up the vessel and what you see here is a perfectly healthy heart.


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Our baby has a healthy heart. A normal heart and will never need to have anymore procedures done to her heart. She is 100% mended. Rosie is fine....we are so happy to have this behind us. We want to shout from the rooftops that Rosie is OKAY. All she has to show, outwardly, for her troubles are one band aid where the IV line went in and on small band aid on the catheter site in her groin and an enormous bruise from the catheter being inserted.

It was a day that truly changed a life. More than one in fact.

29 Sep 2008

Rosie Is Mended. UPDATED

Just a brief note to let everyone know that the surgery is done and Rosie is fine. We were able to hold her and stay with her right until she went to sleep and she is now in recovery. They had to use 2 coils as one alone could not do the job.

I will update later.

Everyone here at Miami Children's Hospital have been wonderful.

Love from, 2 very relieved parents and one big sister.

We were told this morning that we should be able to go home today however that didn't happen so we are here for the night. Rosie is doing very well. She didn't do to well coming out of the anaesthesia so they immediately sedated her and when she came to that time she was much better. She ate a huge amount for dinner and is now asleep. It is so odd to see her attached to all of these wires and the first time her heart monitor went off I nearly needed one but I am used to it now as it literally goes off every few minutes whilst she is awake.
Since I think this will be a sleepless night I am going to go and take a nap while all is quiet. I am sure just as I fall asleep that bloody heart monitor will start screeching.
As a final note: the staff here are truly fabulous. A whole lot better than the ones in the cardiologists office.

28 Sep 2008

My Stress-ometre

Tomorrow is the big day and I think we are ready to head to the hospital. We have to be there at 0-dark hundred hour, so I will head out early with Rosie and then after Jakey drops Lily at school he will race to the hospital and fingers crossed he will be able to see her before she goes under. Many of you have sent offers of help and we truly appreciate them but Lily will need us tomorrow as much as Rosie will so hopefully we can pull off everything ourselves. If we do need you we WILL call. We thought that my father and Jeanne were going to be with us but this cannot be.

I have a birthmark on my neck, it is red and large but not solid just kind of specky. Apparently my grandma had the same one and since I loved my Grandma with all my heart I think it is wonderful to share this quirk. Anyhoo, I don't think about it and don't notice it anymore, it is just a part of me. I never put make up on to cover it as that isn't me. My friend Fran just sent me an email that had me laughing out loud. We met when she was a patient at the Doc's where I used to work and since I was working my hair was always pulled up. We became friends and she commented one time on my neck and how sometimes it is really obvious and sometimes not so much. I explained to her that if I am stressed, or excited it gets really big and red. In her email she said, "I am sure your neck is a nice crimson read and don't worry about your eye being deformed people probably wont even notice it cos they will be to busy staring at your neck". Thanks Frany, you made me laugh which at this stage is a great thing.

Are we nervous? Yes we are. I am not worried about the procedure just the trauma that Rosie will have to undergo. But we will all suck it up and in less than 24hrs our little girl will be classified as "Normal". Now that is a wonderful thing and worth having a neck that is bright red for!


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We will try to contact everyone tomorrow and it will be probably be an email. If we have a chance and can get wireless at the hospital I might just post it here instead.

Again, thank youu for all of your happy thoughts, good vibes and prayers. This little one has love coming in from all over the world and we know she will be just fine.

24 Sep 2008

Helping With The Laundry.

After school on Wednesdays we have a group play date at the park with my friend Jenny and some of the other teachers from her school. It is always alot of fun. We take food and have a great big picnic and the kids get to let off steam and we get to chinwag.
As I was preparing to leave today I turned around having just picked up the camera and this is what I saw. It just looked so very peculiar. Miss Rose has decided to she needs to help with the laundry.


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20 Sep 2008

Rectifying Complaints.

I received a phone call today to tell me that I am not posting enough! So here is my latest effort to bring everyone up to date.

First and foremost: Bye Andie, safe travels. We will miss you on Skype and can't wait for your return. Let us know what you want in your care package.

Second: Ann and Brian, thank you so much for the card. It was a lovely surprise. We are ready to have a healthy little girl and can't wait to see what changes will occur in her, post surgery.

Okay, onward. I have been busy. I am always busy. Life with 2 kids in bonkers but I love it. We are always running somewhere and doing something. Hopefully my bi-weekly visits to the eye doctor will be a thing of the past soon and Rosies visits to the various doctors should be slowing down also which will give us so much more time.

I came home from work on Wednesday and hubby met me at the door and said this, "MCHcalledtheywantedtoknowiftheycouldmoveRosiessurgeryuptothisFridayItoldthemno"
I looked at him and said, "What did you just say?"
Fortunately he actually stopped for a breath this time around and said that MCH had called and they wanted to change the date of surgery to this past Friday, he said no. He is ready for this to happen but he just wasn't able to let them change the date. He has it all figured out in his head and the idea of them messing with the date just made his brain get itchy. He will be fine. He will be very busy that day running to and from the hospital getting Lily to and from school and that sort of stuff so his mind will be occupied. Me, I am ready. I am looking forward to hearing that she is fine and can no longer be classified as a Special Needs child. As for the day of the event, well, who can look forward to something like that?

Lily has managed to go 7 straight days at school without receiving a yellow light for talking. We are very proud of her cos she is a natural chatterbox and she has had to work really hard to rein it in. I think that her bracelet helps her alot and it is starting to look really pretty. She was finally able to go to the treasure box on Friday and was so proud of herself. Lily's other big accomplishment comes on the riding front. She graduated 2 levels in the last 2 weeks and received two diplomas. I love watching her ride, she is just a natural. No fear,no qualms and no problem showing the horse who is boss. Here horse started to rear last week and she immediately showed him she was not having any of that. Her instructor is tough, very tough, she expects alot from Lily, nothing more than she is capable of but she wants 100% all the time and if Lily is slacking, Frenchie gives it to her! It truly is an amazing riding school.

Lily with her trusty stead


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Rose is growing and changing on a daily basis. Her severe fear of strangers is even starting to ebb a little. She tries to do everything herself and gets really cross if she can't. When Lily was little I often wondered if she would ever dress herself because she showed no interest in it whatsoever. One day she took her clothes from me and dressed herself all by herself. Nothing backwards, nothing crooked, everything perfect. This is Lily's trademark. She won't do anything until she can do it perfectly. I remember teaching her to tie her shoes, she wouldn't try she just watched and then about 4 months later she floored me when she came up to me to show me that she had tied her own shoes. Rosie would rather get mad and keep trying.

Notice anything wrong here?

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How about close up?

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She spends hours walking around with her shoes on the wrong feet and sometimes only wears one if she cannot get the other one on. Lily never and I honestly mean NEVER wore her shoes on the wrong feet. Everything I learnt with Lily needs to be thrown out and a whole new set of parenting skills needs to be learnt.

I initially thought Lily's love for Rosie was a honeymoon phase but I was wrong. Lily loves Rose and loves to teach and show her things.

Teaching Rose to count.

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After her bath Rose suffers from an ailment called crazy hair. She loves to look in the mirror and stare at the crazy hair.

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Tonight after her bath Rosie hid behind the door and kept closing her eyes, it was side splitingly funny.

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Every single night after the girls have had a bath I massage them. They both love it, who wouldn't but Rosie finds it necessary to stick her bottom in the air. It is really odd but I have to start with her botty and go from there and if she thinks I haven't spent enough time on it she flips back over and sticks it up in the air again.

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When I downloaded the photos tonight I came across these. Lily must have taken them cos I didn't but they are funny and I need to share them.
This I am aptly calling, Rosies mug shot

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Not sure what this is all about

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My little gangster rapper.

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And last but by no means least, Rosie has been in our family for 7 months today. I am not sure where that scared, grieving little baby has gone because we now have her happy, content, toddler counterpart living in our house. The changes are mind boggling and the love she shares is heart stopping. Happy 7 month anniversary Qi Qi. we love you so much.

Good night.

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