Thursday, April 28, 2011
30 Weeks/ April 28
We had another great doctor appointment today. Tristan passed his Bio-physical profile with an 8 out of 8. The lady said she wasn't expecting to see him breathing because they usually don't see it until later. She seemed kind of shocked but we have been seeing it everytime : ) We got another cute 3D photo of him and I mentioned that we never got a video so she made me a DVD. We talked to Dr. Lake about setting up a meeting with the neonatologist at Scottish Rite and Northeast Ga. Also, he said at 32 weeks we will start having twice weekly appointments (as if I don't already feel like I live in the doctors office), but atleast Tristan is being watched and monitored very carefully!! We also discussed C-section dates. He said he doesn't think we have to worry about him coming early as long as nothing changes. We have to pick a definite date but we can schedule as early as June 29. We should have a definite date soon : ) After the appointment was over we went Wal-Mart and Target and did our baby registry for the baby shower. We are also registered at BabysRUs. My sister is having the shower for us at our house on May 21st at 3:00.
Friday, April 22, 2011
29 Weeks 2day/ April 22
Not a lot to update. Today's appointment went good.We had our first Bio-physical profile and they were able to see everything they needed very quickly so we spent the rest of time just watching our little guy move around and stuff. It seems as though his leg is down now and that he has his legs crossed. We had a talk with Dr. Lake and told him that we wanted to see a different specialist. He immediately had an appointment made with Dr. Allaire and had someone call Dr. Patterson's office and tell them we would not be back and request all of our records. So we will be seeing Dr. Allaire in 3 weeks. As far as the records being sent over, I will not hold my breath!!
Wednesday, April 20, 2011
April 19 Appointment with the Cardiac Specialist
So Dr. Patterson referred us to Sibley Heart Center in Gainesville for a fetal Echo. However, she did not send them an ultrasound report or any information. The only thing they were told is "Possible Dwarfism". So here I am trying to explain to the doctor what we told Dr. Patterson had seen. I'm sure he got a good laugh out of that! Thankfully he did not find any problems. He said was reporting back that Tristan has a normal heart. He could not see the top of the aortic arch due to the way Tristan was positioned but he could see the blood pumping to it and everything. He wants to see me back in one month to try to see it but he said he doesn't think there will be any problems. He was curious as to our whole situation so he decided to look around at the baby other than his heart. Now Tristan's legs appeared to both be down and crossed which baffles me because I thought if his leg was up it would probably stay that way until after he was born. He said his spine looks perfect. Also he seems to be moving. The entire time his head has been on my right side and now it seems he has moved it over to my left and he is kinda curled into a ball.
On another note, the day before my appointment Sibley called and said that Dr. Patterson's office never sent a referral which is required by insurance when seeing a specialist. I called Lee and she said that they did not tell her when she made the appointment that she needed it but that she would take care of it before my appoinemnt the next morning. When I checked in at Sibley they told me that she never sent it so I called her again. She asked to speak with the lady at Sibley so I gave her the phone. She was literally yelling at the lady. It was so rude and I felt horrible. She ended up telling the lady that she would go back to the office then and send it. When I left the office 2 hours later she still had not. I called again the next day and they still hadn't receieved anything and were apologizing to me even though its clearly not their fault. Devin called Lee AGAIN and she again argued that she didn't need to do it. He told her that we talked to our insurance and they do need it so she again said she would send it. We are beyond frustrated with their office. It seems to be one thing after another. So we have decided on Friday to talk to Dr. Lake about the situation and request to be sent to a different Specialist from here on out.
One more thing. I emailed Dr. Espesito. He works at Children's hospital in Omaha. All of the OI parents take their kids there and have wonderful things to say about him. He emailed me back and then called me today. He couldn't tell me anything specific ofcourse but I thought it was very nice that he would take time to call me and talk to me.
On another note, the day before my appointment Sibley called and said that Dr. Patterson's office never sent a referral which is required by insurance when seeing a specialist. I called Lee and she said that they did not tell her when she made the appointment that she needed it but that she would take care of it before my appoinemnt the next morning. When I checked in at Sibley they told me that she never sent it so I called her again. She asked to speak with the lady at Sibley so I gave her the phone. She was literally yelling at the lady. It was so rude and I felt horrible. She ended up telling the lady that she would go back to the office then and send it. When I left the office 2 hours later she still had not. I called again the next day and they still hadn't receieved anything and were apologizing to me even though its clearly not their fault. Devin called Lee AGAIN and she again argued that she didn't need to do it. He told her that we talked to our insurance and they do need it so she again said she would send it. We are beyond frustrated with their office. It seems to be one thing after another. So we have decided on Friday to talk to Dr. Lake about the situation and request to be sent to a different Specialist from here on out.
One more thing. I emailed Dr. Espesito. He works at Children's hospital in Omaha. All of the OI parents take their kids there and have wonderful things to say about him. He emailed me back and then called me today. He couldn't tell me anything specific ofcourse but I thought it was very nice that he would take time to call me and talk to me.
Friday, April 15, 2011
28 Weeks/ April 13&14th
On Wednesday I had my 28 week appointment with my regular OB. The glucose test, finger prick, and Rhogam shot. As much as I dread the needles honestly the worse was probably the finger prick. Basically we just checked the heartbeat again and that was it. Dr. Lake Decided to start the Bio-physical Profiles (finally figured out the name of the ultrasound test they are starting) next week since I had an appointment with Dr. Patterson the next day.
On Thursday we had an appointment with Dr. Patterson. I was anxious to see how Tristan was doing but also very nervous. We had our questions all written down so we wouldn't forget to ask anything. We started with seeing the Lee the UT who did our Level 2 scan. She showed us everything and talked to us a lot. She told us that the OI test came back negative for Type 1 and 2 which is a relief but I don't understand why they didn't test for 1-4. The lab told her specific things to look for on the scan and if she saw those then they would do the other tests but if not they would wait until he is born. She said that they are now leaning more toward Camptomelic Dysplasia but I really don't think it is because we ruled out pretty much all the symptoms that babies with CD have on my 24 week scan at the regular OB. The scan took about an hour or so. Arms and legs are still behind and was hard to get measurements of. Looks as though one arm is bowed and the leg they had previously said was probably fractured is turned awarkadly...basically his foot is up near his face. They didn't see any new fractures. The head was normal, still a little extra fluid but they said nothing to be concerned with unless it becomes more. His chest and ribs were a little small but again they were not concerned. The ribs didn't look as mineralized or ossified as the rest of his bones but there were no breaks or anything. All of his organs looked good. She spent a lot of time looking at his heart and kept telling us that everything was good and what they liked to see. We could see signs of breathing and swallowing. He is VERY active. Then we went in the for the 3D scan. We got lots of pictures. He is the most adorable thing I have ever seen!! They kept saying that they thought his eyes may be close together and they were able to rule that out. He looked absolutely perfect to me!! We got one really cute picture of him where it looked like he was smiling!! After the scan we went in to see Dr. Patterson. I really do not care for her at all. She went back over the ultrasound pictures with us. She said she was a little concerned with the heart. She saw a couple of places that she thought were a little enlarged (not any major parts of the heart) but she said she wants us to see a cardiac specialist just to make sure because if he is going to have a heart condition we need to know before he is born. So now we are waiting on a call to find out when. All in all I feel as though the appointment went well. I still think that it is OI but maybe a milder form but Dr. Patterson said we are going to wait until he is born to do further testing. It seems as though she doesn't really think it is CD either and pointed out that there are other types of OI (which ofcourse I already knew).
On Thursday we had an appointment with Dr. Patterson. I was anxious to see how Tristan was doing but also very nervous. We had our questions all written down so we wouldn't forget to ask anything. We started with seeing the Lee the UT who did our Level 2 scan. She showed us everything and talked to us a lot. She told us that the OI test came back negative for Type 1 and 2 which is a relief but I don't understand why they didn't test for 1-4. The lab told her specific things to look for on the scan and if she saw those then they would do the other tests but if not they would wait until he is born. She said that they are now leaning more toward Camptomelic Dysplasia but I really don't think it is because we ruled out pretty much all the symptoms that babies with CD have on my 24 week scan at the regular OB. The scan took about an hour or so. Arms and legs are still behind and was hard to get measurements of. Looks as though one arm is bowed and the leg they had previously said was probably fractured is turned awarkadly...basically his foot is up near his face. They didn't see any new fractures. The head was normal, still a little extra fluid but they said nothing to be concerned with unless it becomes more. His chest and ribs were a little small but again they were not concerned. The ribs didn't look as mineralized or ossified as the rest of his bones but there were no breaks or anything. All of his organs looked good. She spent a lot of time looking at his heart and kept telling us that everything was good and what they liked to see. We could see signs of breathing and swallowing. He is VERY active. Then we went in the for the 3D scan. We got lots of pictures. He is the most adorable thing I have ever seen!! They kept saying that they thought his eyes may be close together and they were able to rule that out. He looked absolutely perfect to me!! We got one really cute picture of him where it looked like he was smiling!! After the scan we went in to see Dr. Patterson. I really do not care for her at all. She went back over the ultrasound pictures with us. She said she was a little concerned with the heart. She saw a couple of places that she thought were a little enlarged (not any major parts of the heart) but she said she wants us to see a cardiac specialist just to make sure because if he is going to have a heart condition we need to know before he is born. So now we are waiting on a call to find out when. All in all I feel as though the appointment went well. I still think that it is OI but maybe a milder form but Dr. Patterson said we are going to wait until he is born to do further testing. It seems as though she doesn't really think it is CD either and pointed out that there are other types of OI (which ofcourse I already knew).
Thursday, April 7, 2011
Finally a call back from Dr. Patterson's office
We finally got a call back from Dr. Patterson's office this morning. For some reason they called Devin's phone so we missed the call. I called back and had to talk to like 5 people before anyone knew what I was talking about. So our appointment is next Thursday (the day after my the appointment with my regular OB). I will be there for quite a while apparently. I have to meet with Lee first for the Full anatomy scan, then Dr. Patterson, and then someone named Jessica for the 3D. I was told to plan to be there for quite a while. (Unless ofcourse they call back and change my appointment, who knows!). Looking forward to seeing how Tristan is growing since they have the right tools and also his cute little face in the 3D ultrasound! However, I am nervous and scared that we are going to find out something bad. I'm trying to stay positive and just let God take care of everything!!
Wednesday, April 6, 2011
April 6/ 27 Weeks
We had another appointment with our regular OB today. First his heartbeat was good. Dr. Cox said starting next week they are going to start doing some kind of monitoring test (not sure what it was called). They monitor on ultrasound and they look for certain things like signs of breathing/swallowing and for each of the things we get two points. A good score is between 6 and 8 and a poor score is like a 2-4 in which case they would decide that its better for the baby to have an emergency c-section than to remain in the womb. Then at 32 weeks we will also start the non-stress tests. Then we went in for the ultrasound. Amniotic fluid was measuring good. His head was still on track. His legs haven't really grown at all, still measuring almost 18 weeks. I asked about the chest and was told that their machine wasn't able to measure it (which the other girl did last time so I was confused). His abdomen was measuring about 2 weeks behind now (25 weeks). Dr. Cox said that the chest and abdomen usually measure around the same and that since the machine is only accurate within about 2 weeks that it was still ok unless we start to see a pattern. I know its not horrible news but still very disappointing. I was really hoping to hear that his chest and everything were measuring normal. I really didn't care for the UT that I had this time. She never shows us anything or even tells us what she is looking at or what everything is measuring. I kept asking questions about what we were seeing and how things were measuring and she'd just answer me really quick and move on. Basically she said that the Specialist would have to measure the chest and everything because they don't have the tools to do it there. Supposedly, I'm finally going back to the specialist in two weeks but this is the second week in a row that they have tried to get in touch with them for the appointment and we still haven't found anything out. I don't really understand why I have only been seen by the specialist once. It was was 21 weeks when we found out something was wrong. I will be 29 weeks when we go back and I was told I should see her at least once a month. We are still waiting of course on the test results but also Dr. Patterson supposedly sent the ultrasound to several different specialist all over the country and we still haven't been told what their opinions were. It's very frustrating not to mention scary. Guess we just have to wait and see...again! Next week I have another appointment. Not looking forward to this one at all. Finger Prick, Glucose Test, and Rhogam shot in the bottom (OUCH). I'm going to be a human pin cushion. Also they will start doing the test that we were told about today.
Subscribe to:
Posts (Atom)