June 20/ 37 weeks 5 days

Happy Birthday Baby Boy!!

C-section day. We woke up early, took Destiny to my parents house, and drove to the hospital. My c-section was scheduled for 11 Am but we were told to get there at 9 AM. Shortly after arriving they said that Dr. Lake was almost finished with the first surgery of the day and asked if  I would want to do the C-Section sooner. I said yes. It was only a few minutes before Dr. Lake came in and asked if  I was ready. Dr. Lake said a prayer with us and then we were taken back to the OR. I was so nervous I remember Dr. Lake asking what kind of music I want to listen to but I never remember hearing any. Everything went very quickly. At 10:28 AM Tristan Ellis Snapp came into the world screaming. It was the best sound ever. I could see his reflection in the light over my head. Dr. Lake peeked over the sheet and said, "He actually doesn't look that bad Steph." They took him across the room to weigh him and check him out while taking extra precaution incase he might have OI. He weighed 5lbs 10oz and was about 16 1/4 inches long. His APGARs were 8 at one mintue and 9 at 5 minutes. They wrapped him in a blanket and brought him over to me so I could see him. Then they took him to the NICU and Devin went with them. After finishing stitching me up I went into a recovery room and my sister came in with me. Devin came back and told me that Tristan was doing good and he  showed me pictures before going back to check on him again. I was told I couldn't go to a room until I could lift my legs so I kept trying and in almost no time I got to go to my room.

After only a couple of  hours I was so anxious to go see my baby so I got up and moving. He was already in the intermediate care part of the NICU which was a good thing. We were hoping to have him in the room with us soon. They had already done x-rays and said he didn't have any broken bones. The Neonatologist had already been in contact with Emory and Eggleston and had been told not to do any genetic tests while we were there.

We kept hoping that Tristan would be able to move to our room instead of the NICU since he was doing so well. They him on O2 as a precaution but he kept pulling it out so eventually they took it out. At first they wouldn't let us feed him either but by day 2 we started trying to feed him. I would pump and bring it to him. Finally he was IV free and they also removed the tube they put down his throat (another unncecessary precaution). My doctors were trying to wait to discharge me until Tristan was able to be discharged as well but on Thursday they discharged me. Luckily the nurse gave us a family room with relicners we could stay in for free for the night. However, it turns out we didn't need the room because the Neonatologist arranged for us to have the room-in suite in the NICU so we could stay with Tristan and take care of him. We were told he would be discharged the next morning. The day shift nurse came in before she got off and told us that Eggleston had called and requested our information and she said she didn't want us to be suprised if instead of being discharged we would be sent to Eggleston.

Friday morning the Angel Transport Team came an picked him up. It was very hard to see them take my baby even though we were following right behind. I was in tears even though I knew he needed to go have his hydrocelphus checked. I was afraid that he would have to have surgery right away and I was afraid of having to leave my baby there and go home without him. We got to Eggleston a little while after Tristan did. We were happy to find out that not only could we stay the whole time with Tristan but that they encouraged it. We were both exhausted and ready to go home but not without Tristan. We had a constant flow of doctors and nurses in and out. Everyone was very nice and were able to go with him for tests and actually help out. I'm pretty sure they checked every organ in his body!! We were very relieved to find out that his hydro was stable and not putting any pressure on his brain and he did not need a shunt. The Doctor just wants to monitor him closely. The ortho said  he just wants to watch his legs as well for now. The genetecist said it is not OI or CD. Everyone is so quick to rule out OI just because he has no broken bones but I'm not 100%.. She now thinks it is Rhizomelic Chondroplasia Punctata.  I started to look it up but Devin told me not to because I get myself so upset and we don't know anything for certian. We have been told so many things so we agreed to wait until we get test results and know for sure.

After 6 days in the hospital we were beyond ready to go home so we decided to leave on Sunday without the genetic tests. The tests have to be sent out Mon-Fri before 2 PM and they did not realize this before it was too late on Friday. Since there was no guarentee they could get the tests approved Monday morning we decided to wait and get them done as an outpatient at a later time.

June 17th/ 37 weeks 2 days

On Tuesday the 14th we had our check-up with Dr. Lake. He came in and told us we were going to do the C-Section earlier, which we already knew. We talked about doing it on Thursday the 16th (yesterday) and even started to plan the Pre-Op appointment but after going in for the Bio-phyical Dr. Lake decided to wait until Monday the 20th so I will be almost 38 weeks. I think his thinking is the same as mine, that the longer Tristan stays in the more developed his lungs and everything will be. However,  Dr. Allaire didn't want us to go over 38 weeks so he didn't want to go against him either. He said the reason that Dr. Allaire doesn't want us to go over is because the risk of still-birth goes up. So we have one last check-up which is today (Friday) for a non-stress test. Since Dr. Lake isn't going to be in today he went ahead and did all of our Pre-Op paperwork and discussed the risks of the c-section and ofcourse the negative possiblities with the baby which even though I know what they are, it is still really hard to hear. I had just finally put a lot of the negatives out of my mind and was getting excited but now I'm very worried about Tristan and if he is going to be ok again. I keep telling myself that he has been doing awesome the whole time with showing signs of breathing and swallowing and his chest is measuring normal and we have been throughly watched and checked out by doctors so he will be ok. I guess all I can do really is pray and we will find out in just 3 more days. After my checkup today then I have to be at the hospital for Pre-Op so it's going to be another long day of doctors appointments. On a lighter note, yesterday we went and had Destiny a Big Sister Shirt made. It's so cute. It's pink and the front says "Big Sister" in green, ofcourse since it's her favorite and the back has her name on it. Also Jess bought her a white and pink bow that says "Big Sister". Last night was Devin's last night of work until July 5th so we are excited about that. We get the weekend together before Tristan's arrival Monday.

Thanks everyone in advance for your prayers and support! We really appreciate it!!

36 weeks 2 days

So we had our last check-up with Dr. Allaire our perinatologist today. Tristan is still doing good head and chest still growing and measuring good! His femurs do not look as bowed to me anymore. Now his lower arms looked bowed. His hydrocelphus is still around the same. Dr. A asked if we had our C-Section scheduled and I said yes for the 29th which is 39 weeks and he made a wierd face. He said I thought we talked about going sooner. I told him that I guess the other doctors were waiting for him to say when which he said he already told Dr. Lake. Long story short he said that he wants us to have him between 37 and 38 weeks! He said 37 wks 4 days is ok but he does not want us to go to 38....sooo looks like we will probably be having a baby next week! He was calling Dr. Lake as we left. I'm not sure if Dr. Lake's office will call with the new date or if when we go in they will just send us from there to the hospital. So nervous and excited!

35Wks 7days/ June 7th

I had an apointment with my regular OB today. I was checked the first time for dialation today. I was not dialated any but my cervix was soft but not uncommonly soft considering this is my 2nd baby. Then we went in for the Non-Stress Test. We were picking up contractions today but most likely braxton hicks since they were not painful, I just felt an uncomfortable tightening feeling in my lower adbomen. They were going up to like 85 on the machine today though so much stronger than before. Also Tristan's heartrate kept going up really high and alarms were going off. The nurse came in and buzzed him which made the alarms go off even more. I was kinda freaking out but they said everything looked good and we were sent home.

We have our appointment with Dr. Allaire on Friday and another OB appointment on Tuesday.

Exactly 3 weeks from tomorrow is our scheduled C-Section date! So excited and nervous! Even though the doctors like to keep pointing out, IF we make it till then...

35 Weeks 3 days

So I haven't updated on my last few doctor appointments. Everything has been going well and nothing new to report. Tristan always gives great Bio-physicals as well as Non-Stress Tests. Friday's appointment Dr. Lake told me to make sure I have my bags packed incase we should go early since I am almost 36 weeks now. Cannot believe at the most 3 weeks from Wednesday we will have a baby! I'm so nervous and anxious to see our little guy and praying that everything goes well and that he is okay depsite everything else!

Next week I have an appointment with Dr. Cox on Tuesday since Dr. Lake will not be in the office and we go back to Dr. Allaire on Friday.

34 weeks 2 days/ May 27th

We had our checkup with Dr. Allaire today. Tristan's femurs and humerus are measuring about 20 weeks now so about 14 weeks behind. We could not get a mesurment of his tibias because he is so low. Chest is still measuring good, right around 50th percentile. Dr. Allaire said that his abdomen is measuring a little small so they may decide to take him a little early because of that but only maybe 2 weeks early. He said the fluid in his head was measuring about the same as last time so that would not be cause to have him early thankgoodness. However, he said it was measuring about 1-1.5 centimeters this time and last time he said it was over 2...so that was a little confusing. I'm not even sure if it is possible but, maybe it is draining on its own. Really hoping we don't need a shunt!! Dr. Allaire said it's best to keep him in there and not be premature if at all possible (which was my thinking too).

Wednesday Devin's brother and his wife had their baby girl, Kendra Faith. She is so cute! We visited on Wednesday and Destiny LOVED holding her. Today after our check-up we went to visit again. We were in the room while they were taking her pictures and deciding on packages so I went ahead and got one of the packets so I can be prepared. I'm ready to meet our little guy but at the same time I am scared!! I know Devin is ready. He wanted me to have him TODAY!

33 weeks 6 days May 24

I haven't updated on the last few doctors appointments since there wasn't much to update so here goes... Friday May 20th we had our first Non-stress test done at our regular OB appointment. Everything went well. Saturday was our baby shower. We had a good many guests and received a lot of gifts. We just have a few things left to buy before he gets here : ) Monday the 23rd we had our follow up with the Cardiologist and he was still not able to see the aortic arc as well as he liked he gave us a good report and we do not need to come back to see him thankfully! Tues (today) we had another OB appointment. Everything went good. Another great Bio-physical. Tristan was playing with his feet and toes again : )

Friday we have another appointment with the perinatologist Dr. Allaire. I'm worried about his hydrocephalus and wondering if he is going to say we should do the C-Section sooner. Guess I should get my hospital bag ready! Cannot believe we only have 5 weeks left at most!!

32 weeks 6 days....A bit overwhelming

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.

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 : )

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!

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.

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!! 

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.

28 Week 3D ultrasound

 My Favorite Pic!!

Sweet Baby Boy

 His little hand

Cute Foot Pic!

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).

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!!

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.

Tristan sucking his fingers

25 Weeks/ March 23

We had another regular doctor appointment today. Weight gain looked good. This was a fairly quick and short appointment. When Dr. Lake went to check for the heartbeat Tristan kicked him : ) I love when he moves, it lets me know he is still ok! We have another appointment next week just like this one and then in two weeks they are going to do another ultrasound and start monitoring everything.
We finally found out yesterday that insurance will cover the test for OI but they had problems with the test for Camptomelic so we decided to only do the OI test. It really seems more likely to be OI but I still do not see why they would think type 2.

24 Weeks/ March 16

We had a doctor appointment with our regular OB today. Finally we got to see Dr. Lake again. He immediately came in and gave me a hug. Thankfully I gained the weight I lost back and then some. Heartbeat was good. Dr. Lake said he wants to start seeing me once a week from here on out and the later twice a week. He asked if we had heard anything about the tests and we said no. He told us that we were going to do a c-section. He explained that we don't know what is going to happen so he wanted to know how aggressive want to be as far as trying to save the baby and we told him that we wanted to do what is best for the baby. Then he said we could do another ultrasound today.

After talking to everyone and doing my own research I knew the things I wanted to see and look for. The UT was great. She let me ask all the questions I wanted and looked at everything I wanted to see. This time his legs had grown a little but not much they now measured 18 weeks (last time the measured 17). His head, chest, and abdomen were measuring normally which is very good ( one of my main concerns). I asked her if she could see if he was opening and shutting his hands since we had been told of clinched fists. He was opening and shutting them. We could see all of his fingers and he was also sucking on them. He was drinking the fluid which is good (that was a bad sign for Camptomelic). She didn't see any built up fluid around his head or anything. We couldn't tell if his eyes were far apart or not because of the way he was laying. The UT said possibly they could be slightly but she wasn't sure. She let me see him in 4D. He looked absoultely perfect to me!! He has the cutest nose!!

We go back to the specialist at 28 weeks and they should do a 3D to check for the facial features then but I was very happy with what we saw today!!

March 11

Today was Devin's 26th Birthday. Mom watched Destiny so we could go to the movies. Tristan was kicking and moving all throughout the movie and then later that night while we were laying in bed he was moving like crazy. Devin could feel it all. He was moving and kicking very strongly for atleast an hour!!

March 10

I found a support group for moms who children have OI. Everyone has been really helpful and supportive. A lot of them were told the same thing I was and now have children who are fine and even walking. Most of which no one had any history of OI  and their babys were not type 2. Some actually have kids who are type two and are now teenagers. Reading everyone else's stories really helps. It gives me hope! I guess my doctors just do not know much about OI at all. I'm tired of hearing that there is no hope and that he will not make it. He is always moving and kicking and I refuse to think he is not going to be ok!

23 weeks/ March 9

We went to meet with a genetic counselor at Emory today. I was so nervous and scared and really did not want to sit and listen to anymore doctors telling us that there was no way our baby would survive.
Carrie Crain was the counselor. She basically told us what Dr. Patterson had seen on the ultrasound. The long bones in the arms and legs were 2-3 weeks behind, the possible fracture, she said the bone mineralization looked good, and the chest was measuring normal. She also said that Dr. Patterson thought that there may be fluid built up around the forehead like the brain and that his eyes may be wide-set. She said possible face deformities. She said that there are two possible diagnoses OI type 2 or Camptomelic dysplasia. She said neither fit perfectly. Basically she said either diagnosis would be fatal. She again asked if we would want to terminate the pregnancy because we only had until next week. We told her NO. She told us of the possible tests they could still do for both. Finally Dr. Ferhoff came in to talk with us. It seemed as though he had never seen the ultrasound either and was only going off of what Dr Patterson said. He never mentioned it possibly being Camptomelic but he did talk to us about OI. He said at this point we dont know what will happen. He said the baby could pass away in the womb, shortly after birth, or he could live but possibly with a lot of problems, or he could be relatively fine. He said it was the full spectrum at this point. He said that the baby's fist were clinched which makes them think something neurologically could be wrong (this confused me because they concluded his fist are always clinched from 1 ultrasound!). He suggested that I would want to do a c-section and then after the baby is born to send him to Scottish Rite so that they could be involved with his care as well. Atleast he wasn't completely negative with us. When I had asked Carrie about the C-section she said no they wouldn't want to put extra strain on me when they didn't expect the baby not to make it anyway.
I was somewhat disappointed in the appointment. I thought we were going there to get Emory's opinion and not to just hear everything Dr. Patterson thought over again. Also from doing my own research I felt like I knew more about OI than the Carrie girl who didn't even know that Type 1 was the least severe. We were told there is no possibility for it to be any type other than 2 basically which makes no sense to me still!

22 Weeks/March 2nd

I was scared of what we would find out going to the doctor today. We were seeing a Dr. Harrison (someone I had never met). When they checked my weight I had lost 2 lbs in one week! The doctor came in asked if we had heard anything and the left to go call Dr Patterson. He came back and said that she sent the test to California or Oregon or something and that she was waiting to hear back. We had some questions to ask him but he didn't know much. He was very insensitive to what we were going through. He basically said that Dr Patterson thinks it is Type 2 and that the baby is not going to make it. He said Dr Patterson said we could call her today because she would be in the office and could talk to us. Then he told me that he would feel better if I got the shot. He left the room. I sat there devastated and waiting but then decided against the shot because I just wanted to get out of there. After a week I figured there was really no point in the shot now.

When we got home Devin called Dr. Patterson and I sat beside him and listened. She said she sent the amnio to California to test the chromosomes which came back normal then to Oregon to test the genes and was still waiting back to hear from them. We asked if there was anything else it could be and she said Yes. She put us on hold because the Lab in Oregon was calling. He said nothing "jumped out at him". Devin was asked what part of Africa he was from because that might give them some idea of where to look. Then she told us she was setting up an appointment for us to meet with a genetic counselor at Emory  on Wednesday. She said she sent ultrasounds to several doctors all over the country to see what they thought. She wanted us to have as much information as possible because if we wanted to terminate the pregnancy we were running out of time. However, we ofcourse had already talked and had decided that we were definately not going to end the pregnancy. He is our baby. He is always moving and kicking. There was just no way. Plus the more I read the more I wonder just how much this doctor even knows about OI.

Waiting....

The 2 days following our horrible doctors appointment we stay fairly busy. We were moving to a new house. I was still completely horrified and upset. I would start crying at random times and even wake up crying. It makes no sense! I started looking on the internet for more information. I learned that there are different types of OI and that type II is usually fatal either in the prenatal stage or shortly after birth due to respiratory problems. I hoped and prayed it would be a less severe type.

Waiting and not knowing was driving me crazy. Also I remembered that when you get an amnio you should have a Rhogam shot (I'm Rh- and Devin is +) incase my blood mixes with the babys. Finally we decided to call the doctors office on Monday (it had been 5 days and nothing). Devin called and asked if the results were back and they said No he also asked about the Rhogam shot and they were like didn't she get one? Then they got off the phone fairly quickly saying they would have the doctor call me back. Finally I just called my regular OB and told them what was going on and they told me to come in the next day for the shot and they would see if they could find something out.

21 weeks/ Feb. 23

At 17 weeks we were able to find out that we are having a baby boy! Tristan started moving and kicking before 20 weeks. So when we went in for our 21 week appointment we were excited to get to see him on the ultrasound. Everything seemed very routine at first. Tristan was very low which I already knew from all the pressure. The U.T. was having a hard time getting to him because of this. She didn't talk much or explain to us what she was looking at. She quickly gave us two pictures and  said she was going to see if the doctor wanted to come take a look. I thought this was a little weird. The doctor came in looked and then sat down in a chair. He finally said that there was no easy way to say this but the long bones in the babys arms and legs were very short and that he thinks he saw a mass in the babys brain. He said if it were just the arms and legs he would think dwarfism but because of the mass he is worried. He told us he wanted to send us to a maternal fetal specialist. We walked outside to have the nurses call to make the appointment and the doctor hugged me and told me that he hopes he is wrong. I couldn't believe what I was hearing. I immediately started crying so Devin and I sat in the ultrasound room while they made the appointment.

We drove to Demorest about 30 mins away from Gainesville. It was a long ride and I cried the whole time. We went in to another ultrasound room. They asked basically what was seen on the ultrasound and why we were there. Then I laid on the table for about an hour while the U.T. looked and took measurements of everything. She never said anything as far as what she was seeing or anything I simply had to lay and wait. She did however comment on how much he moves. She was not able to get a clear picture of his face/eyes. The doctor came in and was given about 50 of the ultrasound pictures which she took to her office. The UT told her to pay attention to the upper and lower extremities so I asked if that meant that she didn't see a mass and she said "No that's not what it means, it just means those are areas I want her to pay close attention to". After the doctor came back she pointed out some things on the ultrasound. The long bones in the arms and legs were short and not where they should be and she thought there was possibly a fracture in the right femur. She said she did not see a mass but possibly a little extra fluid around the brain. She told us that she thought our baby had something called Osteogenesis Imperfecta or Brittle Bone disease. She said that she strongly suggests that we do an amnio so that we will know for sure. We both wanted to know that if it was this if he would be ok and she really wouldn't answer us but basically implied No. She left the room for a few minutes for us to decide about the amnio. We were both very upset and didn't know what to do. We just wanted to know that he was going to be ok so we decided to go ahead with the amnio because the quicker we did the quicker we find out whats wrong. The doctor and UT came back and immediately got out everything for the amnio and we signed the forms. We were told the results would be expedited and we would find out in 3 days. I was sent home to rest in bed.

Starting this blog.

As everyone knows we are expecting our baby boy Tristan in July. I have decided to start this blog to keep our friends and family up to date on our doctors appointments and Tristan's progress. Also I've heard its therapeutic to be able to write and talk about everything so here goes!