Yesterday we went to the hospital and met with the neonatologist and took a tour of the NICU. He talked to us about OI and the cases he has seen. We also talked about the Hydrocephalus (extra fluid on his brain). He didn't have all the details but he had the just of our case. He said that soon there would be a meeting with him and Dr. Allaire and we will most likely be there to go over everything and make a delivery plan. He also said to expect ALOT of people in the room during delivery with all the NICU people and my doctors.
Today we went in for our regular OB check-up. We did the Bio-physical first. Tristan wasn't moving as much as he normally does...she said probably because I hadn't eaten lunch yet. She got a vibrating buzzer thing to put on my stomach to get him to move around. He finally moved some but not as much as he usually does. He still passed with 8 out of 8. Then we went in to see Dr. Lake. He walked in and said that he had spoken to Dr. Allaire. They definitely want to do a C-section now to try to prevent any fractures (not sure if he went back and saw something after we left because or did more research because he seemed not to be too set on OI at first but at the neonatologist he told him that OI was the diagnosis as well). Both Dr. Lake and Allaire had said before if he turned we could try to have him naturally (which I didn't want to incase it was OI) but now they both say c-section for sure. Also he said we are not going to schedule my c-section now since they normally schedule for 39 weeks and after speaking with Dr. Allaire they think they will need to take him before then. Both Dr's had previously said they don't see why we wouldn't go full term so I'm confused on what the change is unless it is due to the hydrocephalus. Now I'm even more worried. It seems as though depending on what they see at each appointment that any day they will be like we're going to go ahead and take him. I have another checkup on Friday and they are going to start the non-stress tests then. Then Monday back to the cardiac doctor, Tuesday another checkup, and Friday Dr. Allaire again.
Tuesday, May 17, 2011
Friday, May 13, 2011
32 weeks April 10/ 13th
On Tuesday we had our normal checkup at my OB office. Everything went well. Tristan passed his bio-physical with 8 out of 8. He was so cute trying to suck on his toe. His femurs are about 9 weeks behind. Everything else basically still measuring good.
Today we had our first appointment with Dr. Allaire the new perinatologist. We were much happier with him than with Dr. Patterson. First off they just did the measurements and asked what we have been told so far. He said he does not think it is anything fatal which is a relief to actually hear from a doctor since no one has actually came out and said that so far. He looked and saw where they could have seen the possible broken femur. He said that all the bones look calcified good so if it is OI he expects it to be a mild case. He said the same with Campomelic Dysplasia. There was one other thing he asked if I had heard of as a possible diagnosis (can't remember what it was called) and I had never heard of it. Also he said that we may still not know what he has after he is born just because there are so many different types of skeletal dysplasias and he may not exactly fit one. We talked about meeting the Neonatologist at the hospital and he said that since he doesn't expect there to be any breathing issues that we will most likely be taking Tristan to Scottish Rite as an outpatient so we didn't really need to go meet with the neonatologist there. The only bad thing we found out at the appointment was that the fluid in his brain is continuing to build up. He said anything over 1.5 centimeters required having shunt surgery after he is born and his is already at 2 centimeters. So I have started looking up information on shunt surgery. It's supposedly a relatively simple neurosurgical procedure but either way it is very scary to me because it's still brain surgery. He wants us to come back in two weeks. Which is also when I have the follow up appointment with the Cardiac Doctor.
Monday we meet the neonatologist at the hospital and go for a tour. My next OB appointment is on Tuesday and then probably another one on Friday since they want to see me twice a week now. Then that Saturday is my baby shower : )
Today we had our first appointment with Dr. Allaire the new perinatologist. We were much happier with him than with Dr. Patterson. First off they just did the measurements and asked what we have been told so far. He said he does not think it is anything fatal which is a relief to actually hear from a doctor since no one has actually came out and said that so far. He looked and saw where they could have seen the possible broken femur. He said that all the bones look calcified good so if it is OI he expects it to be a mild case. He said the same with Campomelic Dysplasia. There was one other thing he asked if I had heard of as a possible diagnosis (can't remember what it was called) and I had never heard of it. Also he said that we may still not know what he has after he is born just because there are so many different types of skeletal dysplasias and he may not exactly fit one. We talked about meeting the Neonatologist at the hospital and he said that since he doesn't expect there to be any breathing issues that we will most likely be taking Tristan to Scottish Rite as an outpatient so we didn't really need to go meet with the neonatologist there. The only bad thing we found out at the appointment was that the fluid in his brain is continuing to build up. He said anything over 1.5 centimeters required having shunt surgery after he is born and his is already at 2 centimeters. So I have started looking up information on shunt surgery. It's supposedly a relatively simple neurosurgical procedure but either way it is very scary to me because it's still brain surgery. He wants us to come back in two weeks. Which is also when I have the follow up appointment with the Cardiac Doctor.
Monday we meet the neonatologist at the hospital and go for a tour. My next OB appointment is on Tuesday and then probably another one on Friday since they want to see me twice a week now. Then that Saturday is my baby shower : )
Saturday, May 7, 2011
May 6th/ 31 weeks 2 days
Today is Wishbone Day! Everyone wore yellow to support and raise awareness for OI. We ordered yellow bracelets from another mom in the OI parents group. Devin, Destiny, and I wore ours and we bought extras to give out to a few people.
On Thursday we got a call from the doctors office and we scheduled the C-section for June 29. I got a letter in the mail today confirming and also with my pre-op appointment at the doctor office and hospital on the 28th. I can't believe it's getting so close!
My doctor appointment went good again today. Tristan passed his bio-physical with no problems again : ) Also they did a few growth measurements. His head was measuring normal. Abdomen was about a week behind. His femurs were measuring around 22 weeks so about 9 weeks behind and looked bowed still . She couldn't get a good measurement of his tibias because he is so low (which he has been the whole time). The tibias do not look bowed. Also I don't think she measured his arms but they have been around the same as his legs typically from what I remember. We will probably get more indepth measurments when we go see Dr. Allaire next Friday. She estimated his weight at 2lbs 8oz. I asked what was the average weight supposed to be and she said between 3 1/2-4 lbs. I try to put his measurements together in my head and picture what he will look like and how tiny he will be. Wait and See...8 more weeks.
Next week I go back to my regular OB on Tuesday. I think they are starting the Non-Stress tests this week along with the biophyicals. Then on Friday we go to see the new Specialist Dr Allaire. Hopefully he is better than the other one!
On Thursday we got a call from the doctors office and we scheduled the C-section for June 29. I got a letter in the mail today confirming and also with my pre-op appointment at the doctor office and hospital on the 28th. I can't believe it's getting so close!
My doctor appointment went good again today. Tristan passed his bio-physical with no problems again : ) Also they did a few growth measurements. His head was measuring normal. Abdomen was about a week behind. His femurs were measuring around 22 weeks so about 9 weeks behind and looked bowed still . She couldn't get a good measurement of his tibias because he is so low (which he has been the whole time). The tibias do not look bowed. Also I don't think she measured his arms but they have been around the same as his legs typically from what I remember. We will probably get more indepth measurments when we go see Dr. Allaire next Friday. She estimated his weight at 2lbs 8oz. I asked what was the average weight supposed to be and she said between 3 1/2-4 lbs. I try to put his measurements together in my head and picture what he will look like and how tiny he will be. Wait and See...8 more weeks.
Next week I go back to my regular OB on Tuesday. I think they are starting the Non-Stress tests this week along with the biophyicals. Then on Friday we go to see the new Specialist Dr Allaire. Hopefully he is better than the other one!
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.
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