June 28th, 2007 at 10:02 pm
(CDH)
It’s been a slow week with nothing much to report. It was our first appointment free week in a while. We have set an appointment to meet with a surgeon on 9 July, and thats really about it for new developments. We will see the Pediatric Cardiologist on Monday to see what condition the baby’s heart is in. From what we have seen in previous ultrasounds, the last one in particular, her heart has four chambers that appear to be doing what they are suppose to be doing. We will know more on Monday.
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June 20th, 2007 at 9:33 pm
(CDH, Douglas, Page Updates)
I posted one new picture today… I have 12 that I want to post, but only had time to re-size the one. At least this picture updates Douglas to this year. So now you can see one picture of the boy with his uncle.
We spoke to our pediatrician Dr. MB a few days ago. She performed her residency in a neonatal unit in the past and has first hand knowledge of CDH having seen more than one case of it. Her practice has also seen a handful of cases, one of whom is now 4 years old. When we met with Dr. M, a few weeks ago, she had mentioned that our pediatrician would be our advocate at the hospital and to choose one that she is listed with. Turns out she is listed with both Children’s and Cardinal Glennon, as well as St. John’s where we are going now. So where ever we end up we will have a knowledgeable person to act on our behalf, that’s not half bad.
Perinatologist appointment tomorrow. Daphne is feeling rather up beat about this whole thing right now, though she told me she is expecting to hear something tomorrow to ruin that high. We will wait and see what the day brings.
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June 14th, 2007 at 8:51 pm
(CDH)
We had the appointment on Monday with Dr. M who is a partner in Dr. Bs Perinatology group. The ultrasound was done and we learned… nothing. Which in this case is a good thing. Nothing has changed. The reason why that is good is it means nothing has gotten worse. Things will not get better without surgery so if they will not improve on their own, not getting any worse is where we want to be. We also expressed to Dr. M that no one in the practice had sat down with us to explain what was really going on. She seemed rather surprised by this. So she took some time to talk to us. We learned that a early term Congenital Diaphragmatic Hernia is worse than a late term CDH. The odds are better with a late term than an early term. We learned that they need to monitor for excess amniotic fluid which is a causing factor in preterm labor which we are already at risk of since Douglas showed up eight weeks early.
We set up an appointment with Dr. G, the Cardiologist. We really have a nice collection of doctors at this point. We are trying to collect the entire set. Kinda like Pokemon, with 95% less fire breathing. There will be several more on the doctor list before this is all done.
So, the cardiologist only does fetal appointments at 0800. Nothing like fighting morning traffic for an 8am appointment. For anyone else going in to work at 10am would be nice, that would be if the parking lot was big enough for everyone who worked at the place you worked at. On the bright side, it’s a holiday week so it should be better than normal.
Next appointment is back to Dr. B on the 21st. That’s not counting home nurse visits, which Daphne just loves. Nothing like a shot a week. Not a normal shot, but a thick oil based one. Fortunately the home nurse is excellent. We had a home nurse briefly after Douglas was born, it was a bad experience. This time around we hit the quality jackpot.
And that is where I will leave things for now…
3 Comments
June 11th, 2007 at 9:41 pm
(Page Updates)
I stood up a new calendar today. Webcalendar has some nice features and is quite a bit easier to update than the previous method of exporting a Microsoft Outlook calendar from my Vista box into an HTML format and then transferring it to my Ubuntu Linux server, resetting permissions… etc, etc… yes, you’re already bored and you really don’t care, I can tell. Um… how about, Webcalendar doesn’t look like crap like its predecessor, that should cover it.
Several new appointments have been added to the calendar, check July 2nd, 5th and 9th. Did I mention it looks better? Yes, the calendar looks better. Just making sure we covered the non-crappyness of the new calendar.
We had an appointment today for an ultrasound. That post will follow later. Probably tomorrow afternoon.
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June 6th, 2007 at 7:41 pm
(CDH)
We had a doctors appointment with Dr. R. our obstetrician. At this point we still do not know what to do next, we really did not have any news one way or the other. The babies heartbeat sounded good, everything from an external view is progressing normally. We asked a few questions but our doctor is not a neonatolgist or a perinatologist so she answered what she could and will get back to us on the rest of the questions. The most important question is, is there an expert on this surgery in St. Louis or are we going to need to look outside this area for our surgeon. What is going to give our baby girl the best odds to make it to her 85th birthday? We also asked Dr. R. if any other CDH babies have come through her practice. She mentioned on that came through at some point in the past, she said that baby had a much more severe case of CDH. We did not ask but we could tell by her voice that the baby she had seen before did not make it. Our next appointment is an ultrasound on Monday, so we will get a better picture (literally) at that time. One thing I forgot to mention. At the last ultrasound the Dr. B. told us our girls CDH has pushed her heart slightly towards the center of her chest. It is still left of center but it is further over than it should be. Now this sounds bad, but I have seen diagrams of babies with their heart up near their right shoulder, so slightly to the right of where its suppose to be but still in the left side of the chest is not a bad place to be at this time. This does not mean things will not change in the future, but for now its something to hold on to.
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June 3rd, 2007 at 3:49 pm
(CDH)
Since we are well past that first week, the rest of it went a bit like this. I stayed home on Tuesday since Daphne could not lift the boy due to increased risk of miscarriage after the amnio test. Her parents showed up on Wednesday to lift the boy so I could go back to work. We sat around till the first set of results from the genetic testing came in to say no abnormalities for the first three tests that they rush, Downs, Trisomy 13 and Trisomy 18. This first set of results was good news but it still meant waiting for the second set of results from the more complete test. So we spent our time doing quite a bit of waiting and losing quite a bit of sleep. Skip ahead a week of worry to the post where we got the good results and that pretty much brings us up to date. At this point, I have hit most of the websites available that reference CDH, that would be to say, I have not been to very many websites. We really are not sure what to do next. We have an appointment with Dr. R. this week, she is our Obstetrician. We are hoping for a hint of what to do next… though I am guessing that answer involves the word “wait”.
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