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.
5 comments:
wow, what an experience....so very glad all went well, and thanks for sharing the experience with us!!
Probably the best post you will ever do, very emotional but fantastic just the same.
Hugs and kisses
Daddy and Jeanne xxx
What an amazing day and thank goodness for those wonderful folks at MCH. You did a great job documenting it for Rose and for lily as well.
EXCELLENT!!
Ed, Evan, & I are so thrilled that Rose is healthy. We look forward to watching her grow healthy and strong. We send all our love to you!
Thanks so much for explaining it all so well, you know how I love to know all the details. The before and after photos are amazing. I love the one of Jacob holding her with her monitoring on, he almost looks relaxed, finally!
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