So yesterday I had my regular appointment and of course another ultrasound. I really don't look forward to ultrasounds. I usually can't sleep the night before because I fret if they are going to find something new. I know we are out of the woods relatively speaking but I still can't help but feel what if they find something new this time around. Needless, to say it went well...I mean the Omphalocele is still there and the liver is still in it but otherwise the baby is doing well. The joke is that the baby has a beer belly and hence the liver wants to boycott the body due to its beer belly issues. = ) You have to find humor in the situation.We also found out that the Beckwith Wiedemann syndrome test results came back negative so more good news.
Next on the people to meet & greet, and new appointments list is 1. Fetal Echo-cardiogram: to monitor how the baby's ticker is doing. Although the anatomy scan showed all is well the recommendation came from both the surgeon and genetic counselor. 2. Meet with the anesthesiologist: I didn't think you would meet with them till D-day but I guess when you know you are having a planned c-section it is part of the entourage of people you meet.
And I saved the best for last. While I have been feeling the baby kick for a while they haven't been strong enough to feel them on the outside. That changed last week when I could start feeling them outward but Wee Smith isn't a trick pony and won't do it on command. But this morning M. felt the baby kick for the first time. I thought that was pretty cool!
Friday, December 17, 2010
Monday, December 6, 2010
Family Christmas Party
Yesterday we went to a family Christmas party on the Smith side. It was the first time we would see everyone since we found out about the Omphalocele. So it would give us an opportunity to explain to some of what we have gone through. It went a lot better then I expected. I also think it was easier to share all this news at this time seeing that all the test had come back in our favour and we know that this thing is repairable. Better to let people know that yes the news sucks but its operable.
Even better was the pool that one amazing cousin started. For a twooney ($2) you got to choose a date when you think Wee will be born and guess its sex (ha ha we already know DNA doesn't lie but we aren't sharing this news till Wee Smith is born).
The prize is bragging rights and a tax receipt in their name. The money will be matched by M & me as well as that amazing cousin T&M and given to CHEO. I couldn't ask for a better sign of support.
Even better was the pool that one amazing cousin started. For a twooney ($2) you got to choose a date when you think Wee will be born and guess its sex (ha ha we already know DNA doesn't lie but we aren't sharing this news till Wee Smith is born).
The prize is bragging rights and a tax receipt in their name. The money will be matched by M & me as well as that amazing cousin T&M and given to CHEO. I couldn't ask for a better sign of support.
Tuesday, November 30, 2010
Meeting with the surgeon
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.
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.
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.
Friday, October 29, 2010
Time Line Part 1
September 30 (11 weeks 6 days): First ultrasound. We were super excited to see the Wee Smith dancing away. It’s when it really dawned on us that we were truly pregnant. Thank goodness the morning sickness was not for nothing. We waited until after Canadian Thanksgiving to start letting our family know the good news.
October 20 (14 weeks 5 days): The phone call that changed it all. We started with a Midwife. She had called and left a message asking D to call her back. I was wondering why she didn’t just call me at work. She called back later in the evening. Luckily I was in our home office with M. That’s when she told us about the abdominal wall defect. At the time your mind spins and you don’t process anything. We didn’t even know what those words meant. The next day was all about researching what those words meant. I found the most amazing you tube video from the Children’s Hospital of Philadelphia. When I tell people about our Omphalocele I always point them to the video. It explains it well and in a manner that is delicate and leaves you with hope. M and I both have degrees in Science but reading too many peered reviewed articles can send you more into despair then anything else. Science is not about sugar coating difficult topics.
October 26 (15 weeks 4 days): The game plan decided with the Midwife was to go for another ultrasound to determine if what the problem had corrected it self or if it was still there. The High Risk doctor would be on call for consultation. I must admit my heart dropped when I saw the Doctor enter the room after the technician had done an initial scan. After all its only the doctors that have the authority tell you the bad news. The Doctor confirmed that we had an Omphalocele and that my care would have to be transferred to the High Risk Unit at the Ottawa General Hospital. Bye Bye Midwife...hello Maternal Fetal Medicine Unit.
October 29 (16 weeks): M and I met with the genetic counselor at CHEO. I remember her asking us if we knew why we where there. I now know everyone you meet asks you the same thing to make sure you are all on the same page. But at the time my response was I need to have an amniocentesis and we can’t have one till we see you first. We needed to rule out other genetic anomalies often associated with Omphaloceles. She gave us the low down and we left with an amnio appointment and a level 2 ultrasound appointment.
October 20 (14 weeks 5 days): The phone call that changed it all. We started with a Midwife. She had called and left a message asking D to call her back. I was wondering why she didn’t just call me at work. She called back later in the evening. Luckily I was in our home office with M. That’s when she told us about the abdominal wall defect. At the time your mind spins and you don’t process anything. We didn’t even know what those words meant. The next day was all about researching what those words meant. I found the most amazing you tube video from the Children’s Hospital of Philadelphia. When I tell people about our Omphalocele I always point them to the video. It explains it well and in a manner that is delicate and leaves you with hope. M and I both have degrees in Science but reading too many peered reviewed articles can send you more into despair then anything else. Science is not about sugar coating difficult topics.
October 26 (15 weeks 4 days): The game plan decided with the Midwife was to go for another ultrasound to determine if what the problem had corrected it self or if it was still there. The High Risk doctor would be on call for consultation. I must admit my heart dropped when I saw the Doctor enter the room after the technician had done an initial scan. After all its only the doctors that have the authority tell you the bad news. The Doctor confirmed that we had an Omphalocele and that my care would have to be transferred to the High Risk Unit at the Ottawa General Hospital. Bye Bye Midwife...hello Maternal Fetal Medicine Unit.
October 29 (16 weeks): M and I met with the genetic counselor at CHEO. I remember her asking us if we knew why we where there. I now know everyone you meet asks you the same thing to make sure you are all on the same page. But at the time my response was I need to have an amniocentesis and we can’t have one till we see you first. We needed to rule out other genetic anomalies often associated with Omphaloceles. She gave us the low down and we left with an amnio appointment and a level 2 ultrasound appointment.
Wednesday, October 6, 2010
First Post: Hello
The Hubby (M) and I (D) had always talked about creating a blog documenting our first pregnancy. At the time it was to preserve our thoughts, special moments etc. to pass on to our kid at a later date. Electronic baby book, no scrap book skills needed. It was also going to be our way to keep Friends and Family in the loop as to what was going on. Having friends all over Ontario and other parts of Canada we thought it would be easier and lets face it FB has its limits.
Oh how those were the simple days. For what ever reason I always procrastinated starting said blog. And then we got the news no expecting parents let alone first time expecting parents want to hear “ultrasound showed that the baby has an abdominal wall defect”. For a while now our life has been about appointments, tests, results, worry and stress. But we are coming out of that phase. So what better time to start the blog.
M and I live in the Ottawa area. I noticed a lot of the other blogs out there for Omphaloceles are from our American neighbours so we thought it would be nice to put a Canuck perspective on it, free medical care and all (thank goodness). This blog is still more for our Friends and Family to keep them posted on what’s going on with us but if anyone else is going through this I think it’s always a comfort to know you are not alone. At least it was for M and I. I will still put up some of our older stuff as we kept track of it in a book (so old school). I the only link I will share with you is the one from the Children's Hospital of Philadelphia. It's the easiest visual way for you to understand what we are going through.
Thanks for reading. D & M Smith
Oh how those were the simple days. For what ever reason I always procrastinated starting said blog. And then we got the news no expecting parents let alone first time expecting parents want to hear “ultrasound showed that the baby has an abdominal wall defect”. For a while now our life has been about appointments, tests, results, worry and stress. But we are coming out of that phase. So what better time to start the blog.
M and I live in the Ottawa area. I noticed a lot of the other blogs out there for Omphaloceles are from our American neighbours so we thought it would be nice to put a Canuck perspective on it, free medical care and all (thank goodness). This blog is still more for our Friends and Family to keep them posted on what’s going on with us but if anyone else is going through this I think it’s always a comfort to know you are not alone. At least it was for M and I. I will still put up some of our older stuff as we kept track of it in a book (so old school). I the only link I will share with you is the one from the Children's Hospital of Philadelphia. It's the easiest visual way for you to understand what we are going through.
Thanks for reading. D & M Smith
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