Thursday, January 29, 2009
I'm getting nervous...
It's almost Monday and I'm getting nervous about the appointment! But I'm also kind of looking forward to it at the same time. I found a neat video on the website for the Fetal Care Center and it pretty much explained everything I'm going to be doing while I'm there. I should definitely know more once we get it over with. I'm just nervous though because I'm afraid they are going to tell me something bad... because each appointment we've had things have gotten worse. Ugh... oh well. Better to be informed and prepared for all possibilities.
Thursday, January 22, 2009
Schedule for Feb. 2nd
We've got an EARLY start. We will have to leave the house between 4:30 and 5:00 to get there on time.
MRI at 6:30 a.m.
Ultrasound at 8:00 a.m.
ECHO at 10:30 a.m.
Meeting with a Family Support person at Noon
Fill out Medical Forms at 12:30
Meeting with Social Services person at 1:00
Meeting with Genetics person at 1:30
Meeting with all the doctors at 3:00
Then we are done! Wow what a long day that will be...
MRI at 6:30 a.m.
Ultrasound at 8:00 a.m.
ECHO at 10:30 a.m.
Meeting with a Family Support person at Noon
Fill out Medical Forms at 12:30
Meeting with Social Services person at 1:00
Meeting with Genetics person at 1:30
Meeting with all the doctors at 3:00
Then we are done! Wow what a long day that will be...
Wednesday, January 21, 2009
Reality
It's all sinking in today. I don't know what's with the delayed reaction, but now that we finally have the appointment in Cincinnati, I'm kind of freaking out now. This is going to be a major life change. There are still so many unknowns, it's hard to know what to prepare for. I know we will get through it, but it's not easy right now. Once I get all the freaking out from my system, I'll feel a lot better, but right now its tough.
Finally!
We have an appointment! February 2nd. Not sure of the time yet, i'll update when I know. But at least we have a date!
Tuesday, January 20, 2009
Friday, January 16, 2009
Impatient
Well I've called my doctor several times telling them that I haven't heard from Cincinnati yet, and they keep calling up there to check, and still they don't have an appointment for me. Apparently some doctors took time off (How dare they!) so they are still trying to coordinate all the appointments and tests so I can spend the whole day there instead of having to go several times. Ugh. I'm just ready to get this over with!
Monday, January 12, 2009
First things first... the diagnosis
I haven't really blogged before, but I felt like now is the time so I can have an outlet to express my feelings and keep my friends up to date on whats going on during this difficult time. So here we go...
Lee and I were thrilled to find out that we were pregnant with number two! We were trying, but I hadn't really thought much about it because it was the busy time at work. So I was totally surprised because I hadn't been expecting to get a positive test! He was half asleep when I showed him the test, so I think it didn't really register with him right away until after he fully woke up. LOL My parents were visiting too because it was my grandma's 90th birthday and the family was getting together for a big celebration. So I showed my mom the test when I came downstairs with Emmy and she thought it was a thermometer! Haha - no Mom, thermometers don't have two pink lines on them. I didn't tell anyone else for the rest of the day except for my brother and sister-in-law, who sort of guessed on her own. From then until recently I went through pretty much the same thing as I did with Emmy, nausea, headaches, and tiredness. But it was approaching the time for our 20 week ultrasound, and I was praying and praying that Lee was getting his first son. I know how badly he wanted it, so we were super thrilled to find out that it was indeed a boy!! The rest of the ultrasound went fairly routine - the tech asked us if we were seeing the doctor after and we said yes, so she said, "ok, ill just send these to her and she will talk to you about them" which didn't initially register as odd until after we got home. We sat in the waiting room texting and calling everyone we knew to tell the good news, and then the nurse called us back. We sat in the exam room waiting, still just on cloud nine! Not long after, Dr. James came in and said ok well lets talk about these. She then went on to explain that something didn't look right with the baby's brain, that there was an excess of fluid. I was in shock, I couldn't even say anything. She then said that she couldn't really tell me anymore than that, so she was sending us right over to a high-risk OB so we could get more information. She left then, to give us a second to let it sink in, and then she came back with an address and a phone number, and said to go right over, and we would get right in. She was even nice enough to let us go out the back way so we didn't have to walk through the waiting room while crying. So we went out and walked right over to the new doctor, which was right across the street from my regular OB. We got in and went back for another ultrasound, and the tech and Dr. Campbell were very very nice. They explained every little thing they looked at showed me exactly what they were concerned about. They asked if I wanted to do an amnio, and I said yes, because I wanted to rule out everything possible, and that came back normal thankfully. The waiting was really hard, but we made it through. I went back this past Friday (at almost 24 weeks) for another ultrasound to check the fluid levels and they had unfortunately gotten worse. Joey is measuring about 2 weeks ahead, which isn't bad because Emmy measured big too, but his head measurements were at about 30 weeks along, which scared me to death. Not to mention when tihe doctor told me that this increases the risk of stillbirth. The fluid is pressing on the brain so much that all we saw on the ultrasound was black. The brain is still there, but there is so much fluid that its pressing the brain tissue back to his skull. The brain is like a sponge, and when he's born and a shunt is put in the tissue will expand again, but its just a question of how much. And of course, with all that pressing, the question comes up whether or not he will have a lot of brain damage. I am so afraid he will not be able to have any quality of life. I've been trying to keep myself from reading too much on the internet, but one site I found that give me tons of hope is http://www.fetalhydrocephalus.com/. The mother that created that site did so to tell her story of her son's diagnosis and story. Other mothers have told their stories on that site too, and I'll post this over there as well. There are quite a few stories on there of babies just like mine who were diagnosed with Hydrocephalus and were born with some developmental delays, but have grown to become happy, healthy babies. I just have to rely on God and my family and friends to get me through this. We need all the prayers we can get, so if any of you reading this are willing to spare a few, we would very much appreciate it. The latest is that we are waiting on a call from the Fetal Care Center at the University of Cincinnati to call me back, we will be going there for a second opinion and for high level tests to see what exactly is causing this buildup of fluid, and what are his chances for a future.
I'll keep this updated as best as I can. Thanks for reading.
Lee and I were thrilled to find out that we were pregnant with number two! We were trying, but I hadn't really thought much about it because it was the busy time at work. So I was totally surprised because I hadn't been expecting to get a positive test! He was half asleep when I showed him the test, so I think it didn't really register with him right away until after he fully woke up. LOL My parents were visiting too because it was my grandma's 90th birthday and the family was getting together for a big celebration. So I showed my mom the test when I came downstairs with Emmy and she thought it was a thermometer! Haha - no Mom, thermometers don't have two pink lines on them. I didn't tell anyone else for the rest of the day except for my brother and sister-in-law, who sort of guessed on her own. From then until recently I went through pretty much the same thing as I did with Emmy, nausea, headaches, and tiredness. But it was approaching the time for our 20 week ultrasound, and I was praying and praying that Lee was getting his first son. I know how badly he wanted it, so we were super thrilled to find out that it was indeed a boy!! The rest of the ultrasound went fairly routine - the tech asked us if we were seeing the doctor after and we said yes, so she said, "ok, ill just send these to her and she will talk to you about them" which didn't initially register as odd until after we got home. We sat in the waiting room texting and calling everyone we knew to tell the good news, and then the nurse called us back. We sat in the exam room waiting, still just on cloud nine! Not long after, Dr. James came in and said ok well lets talk about these. She then went on to explain that something didn't look right with the baby's brain, that there was an excess of fluid. I was in shock, I couldn't even say anything. She then said that she couldn't really tell me anymore than that, so she was sending us right over to a high-risk OB so we could get more information. She left then, to give us a second to let it sink in, and then she came back with an address and a phone number, and said to go right over, and we would get right in. She was even nice enough to let us go out the back way so we didn't have to walk through the waiting room while crying. So we went out and walked right over to the new doctor, which was right across the street from my regular OB. We got in and went back for another ultrasound, and the tech and Dr. Campbell were very very nice. They explained every little thing they looked at showed me exactly what they were concerned about. They asked if I wanted to do an amnio, and I said yes, because I wanted to rule out everything possible, and that came back normal thankfully. The waiting was really hard, but we made it through. I went back this past Friday (at almost 24 weeks) for another ultrasound to check the fluid levels and they had unfortunately gotten worse. Joey is measuring about 2 weeks ahead, which isn't bad because Emmy measured big too, but his head measurements were at about 30 weeks along, which scared me to death. Not to mention when tihe doctor told me that this increases the risk of stillbirth. The fluid is pressing on the brain so much that all we saw on the ultrasound was black. The brain is still there, but there is so much fluid that its pressing the brain tissue back to his skull. The brain is like a sponge, and when he's born and a shunt is put in the tissue will expand again, but its just a question of how much. And of course, with all that pressing, the question comes up whether or not he will have a lot of brain damage. I am so afraid he will not be able to have any quality of life. I've been trying to keep myself from reading too much on the internet, but one site I found that give me tons of hope is http://www.fetalhydrocephalus.com/. The mother that created that site did so to tell her story of her son's diagnosis and story. Other mothers have told their stories on that site too, and I'll post this over there as well. There are quite a few stories on there of babies just like mine who were diagnosed with Hydrocephalus and were born with some developmental delays, but have grown to become happy, healthy babies. I just have to rely on God and my family and friends to get me through this. We need all the prayers we can get, so if any of you reading this are willing to spare a few, we would very much appreciate it. The latest is that we are waiting on a call from the Fetal Care Center at the University of Cincinnati to call me back, we will be going there for a second opinion and for high level tests to see what exactly is causing this buildup of fluid, and what are his chances for a future.
I'll keep this updated as best as I can. Thanks for reading.
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