So our meeting with the surgeon wasn't what I expected. Mostly because the best they can do is tell you they have to wait until the baby is born before they truly know how they will proceed. I think also for myself it shattered the dream that they could repair this right away. Basically with the liver residing in the Omphalocele (and outside the tummy) the abdominal cavity is smaller then normal meaning they just can't put it back in easy peasy. It has to go in slowly which means multiple surgeries and a stay of approximately a month at the hospital.
I know Wee Smith won't remember it but you can't help but feel for it and all it will go through. But a wise person shared with me what got them through their tough times with their little one they kept telling themselves "What's the alternative?". There isn't one so we just have to get use to it and remind ourselves that we are lucky that modern medicine can fix this and we still get the precious Wee Smith in the end.
This blog is mostly for family & friends to keep them updated on Wee Smith's goings on. But certainly it's also for those who are going through similar things.
Tuesday, November 30, 2010
Friday, November 26, 2010
Time Line Part 2
November 2 (16 weeks 4 days): They usually don’t do this type of detailed ultrasound you are about 18 weeks pregnant. In our case they were trying to assess if they saw soft markers of other genetic defects. They checked every finger, toes, curvature of the legs and all these things you would never have thought of. Abnormalities in any of these things could point to different genetic abnormalities. The ultrasound took over an hour. But in the end the Doctor told us everything looked fine of what they could see. Only draw back was that we would have to have another one because the heart was too young and small in order to get good measurements and test functionality. We did find out that we have a “Giant Omphalocele” and currently the liver resides in it. Funny enough M calls the Wee Smith’s Omphalocele its beer belly so it would make sense that its liver is already trying to bail.
November 4 (16 weeks 6 days): Amniocentesis. Now I don’t have problems with needles. Before I got pregnant I donated blood quite frequently 3-4 times a year. This needle is nothing like blood donation needles. It was the most stressful few minutes of my life. It’s not so much the pain as much as it is what the test represents and the fact that you can see this needle going towards your kid. Luckily the Wee Smith didn’t go near the needle. I wish this test on no one, if you have to go through one just know it doesn’t last too long, just long enough to say an Our Father, Hail Mary and Apostles Creed.
November 8 (17 weeks 3 days): Got the first test back from the Amnio (4 days talk about quick). The RAD test showed no Triploid action on Chromosomes 13, 18, 21 or the sex chromosomes which means no Patus, no Edwards and no Downsyndrome. Needles to say we were relieved. One hurdle down.
November 19 (19 weeks). It was quiet there for a while since our last results. Today we received the rest of the Karyotype analysis. It showed that all other chromosomes appeared normal. More relief. We also got a call from CHEO wanting to arrange an appointment to meet the Surgeon.
November 25 (19 weeks 6 days): Level 2 ultrasound part deux. Now that Wee Smith was over 18 weeks they could check out the heart. This too took an hour. But the good news it all appeared well. With midline deformities like the Omphaloceles often there are also problems with the heart and lungs. The Wee one’s heart and lungs looked A Okay.
November 4 (16 weeks 6 days): Amniocentesis. Now I don’t have problems with needles. Before I got pregnant I donated blood quite frequently 3-4 times a year. This needle is nothing like blood donation needles. It was the most stressful few minutes of my life. It’s not so much the pain as much as it is what the test represents and the fact that you can see this needle going towards your kid. Luckily the Wee Smith didn’t go near the needle. I wish this test on no one, if you have to go through one just know it doesn’t last too long, just long enough to say an Our Father, Hail Mary and Apostles Creed.
November 8 (17 weeks 3 days): Got the first test back from the Amnio (4 days talk about quick). The RAD test showed no Triploid action on Chromosomes 13, 18, 21 or the sex chromosomes which means no Patus, no Edwards and no Downsyndrome. Needles to say we were relieved. One hurdle down.
November 19 (19 weeks). It was quiet there for a while since our last results. Today we received the rest of the Karyotype analysis. It showed that all other chromosomes appeared normal. More relief. We also got a call from CHEO wanting to arrange an appointment to meet the Surgeon.
November 25 (19 weeks 6 days): Level 2 ultrasound part deux. Now that Wee Smith was over 18 weeks they could check out the heart. This too took an hour. But the good news it all appeared well. With midline deformities like the Omphaloceles often there are also problems with the heart and lungs. The Wee one’s heart and lungs looked A Okay.
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