I feel that we can start counting down instead of counting up. Last week's ultrasound appointment went better then I expected. I didn't freak out when yet again the technician checked with the doctor about the ultrasound. In the end it wasn't anything about the baby and at this point that is a good thing. Also the cyst/growth at the base of the baby's umbilical cord had shrunk so this again is good news. I get a break this week from visiting any type of Health care provider but plenty of phone calls to arrange more visits. Next week, along with yet another ultrasound we are also meeting with the Neonatologist. This is a doctor who cares for newborn infants especially the ill and premature. I hope Wee Smith will only fall into one category. So I have heard this is a very important visit and scary as well as they tell try to prepare you for the worst. No sugar coating. Both M and I will be going to this one together. Strength in numbers.
Lastly I just wanted to say how much I appreciate the perinatal nurses at the General. In particular Nurse N. She is truly an amazing person. Both M and I felt that she goes beyond the call of duty. She always has a smile for you and a hug if required. She makes it easier to keep going back to the High Risk Unit.
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, January 18, 2011
Tuesday, January 11, 2011
Week 26: Still hate ultrasounds
I find it is never a good sign when the technician first checks with you to make sure you are immediately seeing a doctor after the ultrasound appointment, and second tells you that they just need to check with the doctor to see if more pictures/scans are needed. In comes a doctor...never a good sign I find. Apparently they have found some things that they wish to monitor more closely. One the heart, it apparently is at a different angle from my last ultrasound three weeks ago. So now my fetal echcocardiogram gets moved to next week instead of two weeks from now. The other thing they found is a cyst of sorts near the umbilical cord which pools blood. Both seemed to puzzle the doctors. At this point no alarms are going off at the MFM clinic, everyone seems calm and they have suggested another ultrasound next week instead of the usual three weeks. Not sure if I should worry yet. The good news, at this point, is that blood flood through the umbilical cord is not impeded by the cyst as they could see that clearly in the ultrasound. The second good news is the heart rate and blood flow through the chambers appear normal. I am trying to focus on that part of the appointment. Needless to say this is why I hate ultrasounds. Till next week we sit and wait.
Update: Okay so when I wrote this originally it was Thursday. I didn't have the heart to post it as it still left a lot of questions unanswered. Today I went for the fetal echocardiogram. The doctor basically said the heart looks good they can't see any faults in it. Yes it is angled different but that is expected because of the negative pressure from the Omphalocele. Once the Wee one is born it will go through some more test because the heart functions differently in utero as opposed to once it is born. But the take away message is the heart is okay.
Update: Okay so when I wrote this originally it was Thursday. I didn't have the heart to post it as it still left a lot of questions unanswered. Today I went for the fetal echocardiogram. The doctor basically said the heart looks good they can't see any faults in it. Yes it is angled different but that is expected because of the negative pressure from the Omphalocele. Once the Wee one is born it will go through some more test because the heart functions differently in utero as opposed to once it is born. But the take away message is the heart is okay.
Sunday, January 2, 2011
Happy New Year
As we celebrated the New Year we celebrated 25 weeks. Only 14 more to go. I have given Wee Smith specific instructions to stay in there as long as possible. In the mean time we have been preparing giving up our office so that it can be a nursery. The spare room will now double as our office. It is really great to have M around seeing as he can build most things. He will be building the crib at a later date. But for now we are purging and organizing to get the nursery empty and ready for baby things.
It is crazy how much this kid has grown. I don't need ultrasound measurements to tell me that. I can feel the Wee one when it moves around and switches position. Lately it still likes to lay transversely preferring to have its head on my right side and feet on my left side. Any position is fine as long as it stays away from my bladder. I have already experienced a few of those kicks and the word debilitating comes to mind. It still does not kick on command but M now can regularly feel it kicking. I am waiting for the day that it kicks Trouble the cat while she herself is lying on me.
Next week another ultrasound, glucose test, and later this month fetal echo cardiogram. They still are monitoring Wee for heart issues. Better safe the sorry. Amazing what modern medicine can do.
Happy New Year.
It is crazy how much this kid has grown. I don't need ultrasound measurements to tell me that. I can feel the Wee one when it moves around and switches position. Lately it still likes to lay transversely preferring to have its head on my right side and feet on my left side. Any position is fine as long as it stays away from my bladder. I have already experienced a few of those kicks and the word debilitating comes to mind. It still does not kick on command but M now can regularly feel it kicking. I am waiting for the day that it kicks Trouble the cat while she herself is lying on me.
Next week another ultrasound, glucose test, and later this month fetal echo cardiogram. They still are monitoring Wee for heart issues. Better safe the sorry. Amazing what modern medicine can do.
Happy New Year.
Friday, December 17, 2010
Week 23: I hate Ultrasounds
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!
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!
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.
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