Yesterday, I waited by the phone all day for the preliminary amnio results. They were supposed to tell us is the baby has trisomy 21, 18 or 13. The wait was awful. I finally broke down around 2:30 and called Anna, the genetic counsellor, to see if she could call the lab.
She finally called back around 3:30 saying that the lab would not have results back Friday. She spoke with the director of the lab, put my number in her cell phone and said that she'd call today either way with an update.
I waited around all day today with the phone by my side. I wasn't holding my breath, though. I assumed that we would probably hear on Monday. At 4:28pm, the phone rang and it was Anna. She said, "I have good news. So far, everything is normal." I cried from relief and thanked her. She really went above and beyond for us, calling the lab on her day off and calling to let us know results. I'm so thankful that we had her again.
Now, we just need to hear about the NAIT results and the rest of the amnio results. We're used to waiting, but at least we have one hurdle behind us! I'll take that for now and just be thankful and revel in the moment.
Saturday, July 12, 2008
Thursday, July 10, 2008
The Waiting Game
We finally had the amniocentesis yesterday. Luckily, I had my sister and niece in town Tuesday night and yesterday morning to distract me. We got to the doctor's office around 10:45am for our 11am appointment. We waited for what seemed like forever, but what was really only one hour.
We finally got into the procedure room and I was looking forward to having a full scan with measurements and all, but since they were done last week, the ultrasound tech did not do any. The munchkin's heartbeat was 148. As soon as she put the ultrasound on my belly, we could see the little one in there moving all over the place, as if to reassure us.
I asked the tech if she could see if the cord had 1 or 2 vessels. At first, she said she thought 2, but later she said it could possibly be a single artery cord. This can be a marker for Trisomy 13 or 18, other physiological defects, or not a problem at all. She couldn't be sure one way or the other, though. DAMN!!!!! One more detail to worry about.
About 1/2 hour later, Dr. RB came in to perform the procedure. He let me know that my uterus had moved enough to give him a spot to go in without going through the placenta. I was extremely nervous. The amnio that I had last year for Dashiell was one of the most painful things I have ever experienced. Glenn held both of my hands. The needle went in. I felt it go through my uterus, but barely felt anything at all! I didn't even feel the pressure of the fluid coming out. It was over quickly and I felt fine afterwards.
The little munchkin had curled up after and the heartbeat was 158. All was well. We got home around 1:30 and I immediately went to lie down in bed. My sister and Pat brought my niece over last night. It was a welcome distraction, but I was told to take it easy. My friends Taifa and Paul came over to help me with her, which allowed me to spend time with her, without having to get on the floor and play.
I did not sleep well last night. I woke up around 4:30 and never quite got back to sleep. It's only 3:45 pm right now. This waiting is killing me. I need to get a phone call tomorrow saying that the baby does not have trisomy 13, 18 or 21. I can't lose this child. It's just not an option. Please God, please, let this baby be born healthy, alive and normal.
We finally got into the procedure room and I was looking forward to having a full scan with measurements and all, but since they were done last week, the ultrasound tech did not do any. The munchkin's heartbeat was 148. As soon as she put the ultrasound on my belly, we could see the little one in there moving all over the place, as if to reassure us.
I asked the tech if she could see if the cord had 1 or 2 vessels. At first, she said she thought 2, but later she said it could possibly be a single artery cord. This can be a marker for Trisomy 13 or 18, other physiological defects, or not a problem at all. She couldn't be sure one way or the other, though. DAMN!!!!! One more detail to worry about.
About 1/2 hour later, Dr. RB came in to perform the procedure. He let me know that my uterus had moved enough to give him a spot to go in without going through the placenta. I was extremely nervous. The amnio that I had last year for Dashiell was one of the most painful things I have ever experienced. Glenn held both of my hands. The needle went in. I felt it go through my uterus, but barely felt anything at all! I didn't even feel the pressure of the fluid coming out. It was over quickly and I felt fine afterwards.
The little munchkin had curled up after and the heartbeat was 158. All was well. We got home around 1:30 and I immediately went to lie down in bed. My sister and Pat brought my niece over last night. It was a welcome distraction, but I was told to take it easy. My friends Taifa and Paul came over to help me with her, which allowed me to spend time with her, without having to get on the floor and play.
I did not sleep well last night. I woke up around 4:30 and never quite got back to sleep. It's only 3:45 pm right now. This waiting is killing me. I need to get a phone call tomorrow saying that the baby does not have trisomy 13, 18 or 21. I can't lose this child. It's just not an option. Please God, please, let this baby be born healthy, alive and normal.
Monday, July 7, 2008
Jerk Pat!
My sister called me on Friday to let me know that she would be coming to NYC with my 4 year old niece this Tuesday, Wednesday and Thursday. Not great timing with the amnio coming up again, but I was still very excited to see them. They were planning on staying with us.
Last night, I got a call that they were going to stay in a hotel and that our close family friend, Pat (affectionately known as "jerk Pat") is coming, too. Now, I'm excited to see Pat, but I do not want her to know that I am pregnant. I don't really want anyone else to know until we're very close to delivery, or at least until we know what we're dealing with.
I guess I'm going to have to dress in a giant trash bag, or something similar with no form, because I'm bigger than I've ever been! On the bright side, my precious niece will be having a sleepover at my place on Wednesday night while her mom goes to a Broadway show with Jerk Pat. It will be a good way to take my mind off of the amnio, plus, I love her so much!!!
The anxiety is starting to build again about the amnio, the results for any Trisomy and the possibility of NAIT. I feel like we've been in a holding pattern for so long. I'm just ready to move & do something. It's horrible, helpless feeling; especially for a control freak, like me.
Last night, I got a call that they were going to stay in a hotel and that our close family friend, Pat (affectionately known as "jerk Pat") is coming, too. Now, I'm excited to see Pat, but I do not want her to know that I am pregnant. I don't really want anyone else to know until we're very close to delivery, or at least until we know what we're dealing with.
I guess I'm going to have to dress in a giant trash bag, or something similar with no form, because I'm bigger than I've ever been! On the bright side, my precious niece will be having a sleepover at my place on Wednesday night while her mom goes to a Broadway show with Jerk Pat. It will be a good way to take my mind off of the amnio, plus, I love her so much!!!
The anxiety is starting to build again about the amnio, the results for any Trisomy and the possibility of NAIT. I feel like we've been in a holding pattern for so long. I'm just ready to move & do something. It's horrible, helpless feeling; especially for a control freak, like me.
Thursday, July 3, 2008
No Go for the Amnio
So, I got to the Dr office yesterday morning and went through the genetic counselling. (ironically, the genetic counsellor was the same on I had back in November at a different hospital. She just moved to this office 1 month ago and she's fantastic).
After that, I was brought into the procedure room. The u/s tech wanted to do a "mini" anatomy scan. Since it's still so early, there is only so much to be seen. She really reassured me that everything looks really good. The nasal bone was very visible (an absent nasal bone can . She said that usually with Trisomy 13 &18, there are things that are very abnormal. Baby was moving around like crazy, weighs 5oz, measured at 16w5d (over 1 week ahead!) and had a heartbeat of 154.
After the scan was over (about 1/2 hour later) we got ready for the amnio. Dr RB came in to take a look. Since my placenta is anterior, there was no way for him to go in without going through the placenta. Normally this would not be a problem, but because we may be dealing with Alloimmune Thrombocytopenia, he was nervous about the baby's blood getting into my blood stream, causing my body to vigorously attack the baby. He wants to wait a week and see if my uterus moves into a different position where he can go in and avoid the placenta. If next week, he is not able to, but it looks like things are moving, it may be delayed until the following week. If it hasn't moved and doesn't look like it's going to, he will do it next week.
At least I got a little reassurance regarding the trisomy 13/18 situation. I think I'll be ok waiting until next week. Plus, the genetic counsellor is going to call the lab personally for an early pick up so that we can hopefully have results for trisomy 21, 18 & 13 the next day.
This is all very frustrating, but as long as the end result is a healthy, normal, living baby, I don't care what I have to go through.
After that, I was brought into the procedure room. The u/s tech wanted to do a "mini" anatomy scan. Since it's still so early, there is only so much to be seen. She really reassured me that everything looks really good. The nasal bone was very visible (an absent nasal bone can . She said that usually with Trisomy 13 &18, there are things that are very abnormal. Baby was moving around like crazy, weighs 5oz, measured at 16w5d (over 1 week ahead!) and had a heartbeat of 154.
After the scan was over (about 1/2 hour later) we got ready for the amnio. Dr RB came in to take a look. Since my placenta is anterior, there was no way for him to go in without going through the placenta. Normally this would not be a problem, but because we may be dealing with Alloimmune Thrombocytopenia, he was nervous about the baby's blood getting into my blood stream, causing my body to vigorously attack the baby. He wants to wait a week and see if my uterus moves into a different position where he can go in and avoid the placenta. If next week, he is not able to, but it looks like things are moving, it may be delayed until the following week. If it hasn't moved and doesn't look like it's going to, he will do it next week.
At least I got a little reassurance regarding the trisomy 13/18 situation. I think I'll be ok waiting until next week. Plus, the genetic counsellor is going to call the lab personally for an early pick up so that we can hopefully have results for trisomy 21, 18 & 13 the next day.
This is all very frustrating, but as long as the end result is a healthy, normal, living baby, I don't care what I have to go through.
Tuesday, July 1, 2008
Peace & Bad Dreams
I've been plagued by bad dreams lately. This past Sunday night, I had a very vivid and intense dream that I was bleeding and blod clots were coming out. I went to the hospital and my mother was there. At that point I woke up. It was 1am. I went to the bathroom to make sure it was just a dream & went back to sleep.
The dream started back up again. I was waiting in the hospital with my mom; waiting to see if something was wrong. We finally got in an elevator with 2 pregnant women who were happy. I remember crying and praying when I woke up again. It was 4:30am and I could not go back to sleep.
It's ironic, because on Sunday afternoon, for the first time since the NT screen results, I had a feeling of peace and a strong sense that everything was ok.
Needless to say, the dream threw me for a loop. These results can't come fast enough. I'm not looking forward to the actual amnio. I know how painful it will be. It will all be worth it, though, if everything is ok.
The dream started back up again. I was waiting in the hospital with my mom; waiting to see if something was wrong. We finally got in an elevator with 2 pregnant women who were happy. I remember crying and praying when I woke up again. It was 4:30am and I could not go back to sleep.
It's ironic, because on Sunday afternoon, for the first time since the NT screen results, I had a feeling of peace and a strong sense that everything was ok.
Needless to say, the dream threw me for a loop. These results can't come fast enough. I'm not looking forward to the actual amnio. I know how painful it will be. It will all be worth it, though, if everything is ok.
Friday, June 27, 2008
Yet another thing to worry about
So, I've been even worse about writing. We have gotten so much information in the last month, it's staggering. On May 20, we met with the 2 doctors who will be treating me if this baby is affected with neonatal alloimmune thrombocytopenia (NAIT). The first Dr., Dr. RB is a perinatologist / MFM, who would be doing the PUBS procedure (the precutaneous umbilical blood sample). He had a look at my records, the autopsy and said he couldn't be sure if NAIT was the cause of Dashiell's death. Worse, he said that it could have been one of three things:
1 - a clot in the placenta
2- a cord accident
3-NAIT
We also learned that about 90-95% of cases have an incompatibility with the #1 platelet. Ours is with the #5. On top of that, I may have a clotting issue, so he wasn't quite sure what to do with me. He recommended an amnio at 15 weeks to definitively determine if the baby is affected. If so, he wants to start the IVIg treatments at 20 weeks. He referred me to a doctor in the same practice to act as my OB. He is Dr. G. Dr G is a protege of Dr. RB and has a broad knowledge and lots of experience with NAIT. I do feel that I'm in the best possible hands.
Our next stop was with Dr. JB. He is a pediatric hematologist and works out of a sister hospital. After we got there, I had a lot of blood drawn. (about 28 vials). We met with Dr. JB and he essentially said the same thing that Dr. RB said. However, he said that if he felt that NAIT had been the cause of Dash's death that he would start IVIg at 12 weeks and do 2 treatments per week! Quite a difference. He also thought that Dash's death may have been cause by something else. He asked me to have the autopsy slides sent to him so that he could discuss with their placental pathologist on site. He gave me his card and told me to email him to remind him that I would be calling for results the following week.
We left feeling overwhelmed and almost with more questions than answers. The HPA 5a/5b incompatibility is supposedly milder than the other forms of NAIT. I did some research and found a girl who had lost her child at 32 weeks. She had the HPA 5a/5b incompatibility, as well as the HPA 3a/3b one, but for some unknown reason, her body did not form antibodies for the #3 incompatibility.
I emailed Dr. JB the following week to let him know that I would be calling for results and that I wanted to start treatment regardless. I also mentioned Erika, the girl who lost her baby at 32 weeks due to NAIT. Since it wouldn't hurt the baby and could potentially help, I saw no reason to delay starting. He emailed me back that day saying that he found the loss at 32 weeks "suspicious" and to see if she would send her medical records to him. Luckily, she did. The kindness of strangers is quite amazing.
He did not call the first night he said he would, so I called back the second day and was promised a phone call. He still did not call back. Finally, I emailed again and asked for a response. His assistant call and said that the dr wanted to see the autopsy slides first, which were on their way. He was then out of the office from Friday-Tuesday. I called & emailed Tuesday, but never received a phone call back. I called again Wednesday and said I really needed to speak with him and asked for a phone call that night. By 7:30pm, we still hadn't heard. Finally at 9pm I went to sleep. The phone rang at 10:45pm and it was Dr. JB calling. I woke up out of a dead sleep to talk to him, and didn't quite have all my bearings. He said that he did not think that NAIT had caused Dash's death, but still had not shown the slides to the pathologist. He said that he didn't fully believe Erika's medical records. Unbelievable! He also said that he understood where I was coming from and that I could begin the IVIg treatments if I really wanted to, "it's your choice". I was relieved and feeling much better.
The next day, I called his research assistant to set up the insurance claim and home care for treatments. The ball was rolling. She told me to call on Monday to set up the appointment for the first treatment. I called Monday, June 9, again, no call back. I called Tuesday and got him in person. He was extremely terse, bordering on rude. He told me that I was not to start treatments and he thought that there was something to the clot in the placenta, having spoken with the pathologist. I asked why I couldn't just start treatments. There was no answer. I was told to make an appointment on 6/23 for some blood work on me and my husband. I was devastated and very scared by the implications of not starting treatments, but clearly got the message that it was no longer "my choice".
We had our first intake appointment at the new OB's office with the nurse/midwife on June 3. It was very long, with an extensive history taking that day, but I appreciate how thorough they are. We had an ultrasound, as well, and tried to do the Nuchal Translucency screen. I have learned to hate ultrasounds. I get so nervous that I shake, get short of breath and even throw up at times from nerves. I don't think that ever will change. Well, our little munchkin was moving around like crazy, as if to reassure us that everything is ok. We couldn't get the baby into the right position for the NT screen and were told to come back on 6/12 to try again.
I went back on 6/12 and the baby was not cooperating again! It took about 45 minutes, but the tech was finally able to get the measurement. 2.01mm (anything under 3 is considered normal). I also had my blood drawn and went on my merry way.
On 6/18, the day before I was to meet with my new OB for the first time, I came home to a message, "Allison, this is Ana, a genetic counsellor from Dr. G's office. Can you please give me a call?" My heart sank. I knew they would not call unless there was something wrong. My results came back. The normal risk for Trisomy 21 (down's syndrome) for my age group is 1:475, mine came back 1:4,685. I thought, great news! Then she told me that the average risk for Trisomy 13 & Trisomy 18 for my age group is 1:436. Mine came back 1:42. More than 10 times more risk than normal. This does not mean the baby has this, just that I'm at higher risk. She asked me if I wanted to come in for a CVS and I let her know that my amnio was already scheduled for 7/2. Plus, I've been told I can't have the CVS, due to the risk of NAIT. Since the procedure involves blood, my body could potentially have a bad reaction and produce more antibodies to fight the baby's ability to make platelets. I thanked her, hung up the phone and got unbelievably angry. Don't we have enough to worry about? Why is it that some people, people who shouldn't even have children, just sail through pregnancy and now we're handed 2 more very major things to worry about? It's just not fair. There is no rhyme or reason in this life.
I met with my new OB, Dr. G, the following day. He was able to reassure me somewhat and said that if the baby did have one of the trisomy's that the tech would likely have seen something. During the NT screen, the tech kept telling me how great everything looked, so I'm hanging onto that for now. Dr. G is wonderful and I'm so happy that I will be working with him. I asked to have the heartbeat checked while I was there. The nurse came in to check and couldn't find one. My heart sank. She left the room and sent the head nurse midwife in. She found it right away. Nice and strong at 155!
This past Monday, 6/23, Glenn and I went in for our blood work and appointment with Dr JB. I was not looking forward to it at all, since our last conversation was a bit contentious. Our appointment was at 8:30am. We arrived just after 8am. The nurse came back to take my vitals and asked why we were there. Dr. JB had not put in the order for the blood work. She said they would page him. No problem. We went back to the waiting room and waited. At 9:30, one hour after we were supposed to be seen, I asked the front desk how much longer it would be. "He's not even here yet. He usually doesn't come in until 10-10:30." WHAT?????? Are you kidding me? Why were we given an 8:30 appointment time if he's not here until 10:30. I just broke down and started crying. I was missing work and all of the pressure of everything we are faced with right now came crashing in on me. His research assistant came out to let me know that he was on his way. I was hoping he had some emergency. At least that would have been a valid excuse. However, I heard one of the nurses say, "Dr JB is leaving his house soon."
We finally got to see him around 11:15, nearly 3 hours after our appointment time. He was also being observed by 2 fellows. He apologized for the delay saying that there was a "paperwork emergency". I don't work in a hospital, nor have I ever, but it seemed like BS to me. So far, my blood work looked good. I was taking notes diligently, as I have been to try to keep everything straight. He made a comment about that, I think trying to be funny, but it was not funny to me at all. I explained that I had to write things down to keep them straight. I later asked him, "If the baby is affected by NAIT, how soon after the amnio can I start IVIg?" He said, "You can really start right away, but there is only one of us in the room that thinks it's urgent." (meaning me) At that point I was over him. I said nicely, but firmly, "Dr JB, I lost my first child. I can NOT lose another child. If that means that I get 2 extra weeks of blood treatments, then that is what it means. I assure you that the pain and inconvenience of the treatments pales in comparison to mourning a baby." He then backed down a bit.
After our meeting, we had to wait longer for our blood work order to be put in. Finally, around 12:15, we went back to get our blood drawn. It was only about 6 vials, so no big deal. I went first. Glenn went after me. Just as they finished Glenn, he said, "I don't feel too well" and turned sheet white. The nurses helped him onto a bed. As soon as they sat him down, his eyes went blank and he started convulsing for about 5-10 seconds. It scared me to death! They quickly tilted the bed backwards to get the blood going to his head. One of the nurses fed him a juice to get his blood sugar back up. I believe he passed out because we sat in the damned waiting room way too long. He ate breakfast before we left the apartment, but by that time it was lunch time. Needless to say, I'm really hoping that this baby is ok and we don't have to deal with him for much longer.
Yesterday, I called Dr G. I had been having a weird pain in my right calf. It went away last week. I wrote that off since I had a cold/flu all week last week. It came back on Monday and moved up my leg. With my clotting history, I figured I'd better call. My doc told me to come in right away. He measured my legs & found that my right leg was 1/2" bigger than the left. He said it wasn't enough to be concerned about, but to come back if it gets worse. I asked if he would check the hb while I was there. Once again, he couldn't find the hb with the doppler. He grabbed the u/s machine and there was the munchkin. The hb was 130-140. He didn't get an exact read, but it's a high risk practice and he fit me in with no notice, which I really appreciated. The frustrating thing was he said at first, "Take a baby aspirin - no don't . You really can't if you have NAIT" It's so frustrating to have conflicting conditions!!!
So, only 5 days until the amnio. The answers can't come soon enough. I can't lose another child. I can't. I don't know how I would survive that. I pray that everything is ok with this baby or, if the baby has to be affected by something, please let it be NAIT, which is treatable. I'm terrified and incredibly anxious for some good news.
1 - a clot in the placenta
2- a cord accident
3-NAIT
We also learned that about 90-95% of cases have an incompatibility with the #1 platelet. Ours is with the #5. On top of that, I may have a clotting issue, so he wasn't quite sure what to do with me. He recommended an amnio at 15 weeks to definitively determine if the baby is affected. If so, he wants to start the IVIg treatments at 20 weeks. He referred me to a doctor in the same practice to act as my OB. He is Dr. G. Dr G is a protege of Dr. RB and has a broad knowledge and lots of experience with NAIT. I do feel that I'm in the best possible hands.
Our next stop was with Dr. JB. He is a pediatric hematologist and works out of a sister hospital. After we got there, I had a lot of blood drawn. (about 28 vials). We met with Dr. JB and he essentially said the same thing that Dr. RB said. However, he said that if he felt that NAIT had been the cause of Dash's death that he would start IVIg at 12 weeks and do 2 treatments per week! Quite a difference. He also thought that Dash's death may have been cause by something else. He asked me to have the autopsy slides sent to him so that he could discuss with their placental pathologist on site. He gave me his card and told me to email him to remind him that I would be calling for results the following week.
We left feeling overwhelmed and almost with more questions than answers. The HPA 5a/5b incompatibility is supposedly milder than the other forms of NAIT. I did some research and found a girl who had lost her child at 32 weeks. She had the HPA 5a/5b incompatibility, as well as the HPA 3a/3b one, but for some unknown reason, her body did not form antibodies for the #3 incompatibility.
I emailed Dr. JB the following week to let him know that I would be calling for results and that I wanted to start treatment regardless. I also mentioned Erika, the girl who lost her baby at 32 weeks due to NAIT. Since it wouldn't hurt the baby and could potentially help, I saw no reason to delay starting. He emailed me back that day saying that he found the loss at 32 weeks "suspicious" and to see if she would send her medical records to him. Luckily, she did. The kindness of strangers is quite amazing.
He did not call the first night he said he would, so I called back the second day and was promised a phone call. He still did not call back. Finally, I emailed again and asked for a response. His assistant call and said that the dr wanted to see the autopsy slides first, which were on their way. He was then out of the office from Friday-Tuesday. I called & emailed Tuesday, but never received a phone call back. I called again Wednesday and said I really needed to speak with him and asked for a phone call that night. By 7:30pm, we still hadn't heard. Finally at 9pm I went to sleep. The phone rang at 10:45pm and it was Dr. JB calling. I woke up out of a dead sleep to talk to him, and didn't quite have all my bearings. He said that he did not think that NAIT had caused Dash's death, but still had not shown the slides to the pathologist. He said that he didn't fully believe Erika's medical records. Unbelievable! He also said that he understood where I was coming from and that I could begin the IVIg treatments if I really wanted to, "it's your choice". I was relieved and feeling much better.
The next day, I called his research assistant to set up the insurance claim and home care for treatments. The ball was rolling. She told me to call on Monday to set up the appointment for the first treatment. I called Monday, June 9, again, no call back. I called Tuesday and got him in person. He was extremely terse, bordering on rude. He told me that I was not to start treatments and he thought that there was something to the clot in the placenta, having spoken with the pathologist. I asked why I couldn't just start treatments. There was no answer. I was told to make an appointment on 6/23 for some blood work on me and my husband. I was devastated and very scared by the implications of not starting treatments, but clearly got the message that it was no longer "my choice".
We had our first intake appointment at the new OB's office with the nurse/midwife on June 3. It was very long, with an extensive history taking that day, but I appreciate how thorough they are. We had an ultrasound, as well, and tried to do the Nuchal Translucency screen. I have learned to hate ultrasounds. I get so nervous that I shake, get short of breath and even throw up at times from nerves. I don't think that ever will change. Well, our little munchkin was moving around like crazy, as if to reassure us that everything is ok. We couldn't get the baby into the right position for the NT screen and were told to come back on 6/12 to try again.
I went back on 6/12 and the baby was not cooperating again! It took about 45 minutes, but the tech was finally able to get the measurement. 2.01mm (anything under 3 is considered normal). I also had my blood drawn and went on my merry way.
On 6/18, the day before I was to meet with my new OB for the first time, I came home to a message, "Allison, this is Ana, a genetic counsellor from Dr. G's office. Can you please give me a call?" My heart sank. I knew they would not call unless there was something wrong. My results came back. The normal risk for Trisomy 21 (down's syndrome) for my age group is 1:475, mine came back 1:4,685. I thought, great news! Then she told me that the average risk for Trisomy 13 & Trisomy 18 for my age group is 1:436. Mine came back 1:42. More than 10 times more risk than normal. This does not mean the baby has this, just that I'm at higher risk. She asked me if I wanted to come in for a CVS and I let her know that my amnio was already scheduled for 7/2. Plus, I've been told I can't have the CVS, due to the risk of NAIT. Since the procedure involves blood, my body could potentially have a bad reaction and produce more antibodies to fight the baby's ability to make platelets. I thanked her, hung up the phone and got unbelievably angry. Don't we have enough to worry about? Why is it that some people, people who shouldn't even have children, just sail through pregnancy and now we're handed 2 more very major things to worry about? It's just not fair. There is no rhyme or reason in this life.
I met with my new OB, Dr. G, the following day. He was able to reassure me somewhat and said that if the baby did have one of the trisomy's that the tech would likely have seen something. During the NT screen, the tech kept telling me how great everything looked, so I'm hanging onto that for now. Dr. G is wonderful and I'm so happy that I will be working with him. I asked to have the heartbeat checked while I was there. The nurse came in to check and couldn't find one. My heart sank. She left the room and sent the head nurse midwife in. She found it right away. Nice and strong at 155!
This past Monday, 6/23, Glenn and I went in for our blood work and appointment with Dr JB. I was not looking forward to it at all, since our last conversation was a bit contentious. Our appointment was at 8:30am. We arrived just after 8am. The nurse came back to take my vitals and asked why we were there. Dr. JB had not put in the order for the blood work. She said they would page him. No problem. We went back to the waiting room and waited. At 9:30, one hour after we were supposed to be seen, I asked the front desk how much longer it would be. "He's not even here yet. He usually doesn't come in until 10-10:30." WHAT?????? Are you kidding me? Why were we given an 8:30 appointment time if he's not here until 10:30. I just broke down and started crying. I was missing work and all of the pressure of everything we are faced with right now came crashing in on me. His research assistant came out to let me know that he was on his way. I was hoping he had some emergency. At least that would have been a valid excuse. However, I heard one of the nurses say, "Dr JB is leaving his house soon."
We finally got to see him around 11:15, nearly 3 hours after our appointment time. He was also being observed by 2 fellows. He apologized for the delay saying that there was a "paperwork emergency". I don't work in a hospital, nor have I ever, but it seemed like BS to me. So far, my blood work looked good. I was taking notes diligently, as I have been to try to keep everything straight. He made a comment about that, I think trying to be funny, but it was not funny to me at all. I explained that I had to write things down to keep them straight. I later asked him, "If the baby is affected by NAIT, how soon after the amnio can I start IVIg?" He said, "You can really start right away, but there is only one of us in the room that thinks it's urgent." (meaning me) At that point I was over him. I said nicely, but firmly, "Dr JB, I lost my first child. I can NOT lose another child. If that means that I get 2 extra weeks of blood treatments, then that is what it means. I assure you that the pain and inconvenience of the treatments pales in comparison to mourning a baby." He then backed down a bit.
After our meeting, we had to wait longer for our blood work order to be put in. Finally, around 12:15, we went back to get our blood drawn. It was only about 6 vials, so no big deal. I went first. Glenn went after me. Just as they finished Glenn, he said, "I don't feel too well" and turned sheet white. The nurses helped him onto a bed. As soon as they sat him down, his eyes went blank and he started convulsing for about 5-10 seconds. It scared me to death! They quickly tilted the bed backwards to get the blood going to his head. One of the nurses fed him a juice to get his blood sugar back up. I believe he passed out because we sat in the damned waiting room way too long. He ate breakfast before we left the apartment, but by that time it was lunch time. Needless to say, I'm really hoping that this baby is ok and we don't have to deal with him for much longer.
Yesterday, I called Dr G. I had been having a weird pain in my right calf. It went away last week. I wrote that off since I had a cold/flu all week last week. It came back on Monday and moved up my leg. With my clotting history, I figured I'd better call. My doc told me to come in right away. He measured my legs & found that my right leg was 1/2" bigger than the left. He said it wasn't enough to be concerned about, but to come back if it gets worse. I asked if he would check the hb while I was there. Once again, he couldn't find the hb with the doppler. He grabbed the u/s machine and there was the munchkin. The hb was 130-140. He didn't get an exact read, but it's a high risk practice and he fit me in with no notice, which I really appreciated. The frustrating thing was he said at first, "Take a baby aspirin - no don't . You really can't if you have NAIT" It's so frustrating to have conflicting conditions!!!
So, only 5 days until the amnio. The answers can't come soon enough. I can't lose another child. I can't. I don't know how I would survive that. I pray that everything is ok with this baby or, if the baby has to be affected by something, please let it be NAIT, which is treatable. I'm terrified and incredibly anxious for some good news.
Wednesday, June 25, 2008
6 Months since we lost Dashiell
I felt weird and anxious all day today. When I got home, I had a sudden urge to go through Dash's things. I realized that it was the 6 month anniversary of his death. I thought about it this week, but I think I blocked it out. I cried harder than I have in a long time. I know that he knows this, but I had to tell him that this baby is no replacement for him. He should be here, 2 1/2 months old by now. I still can't get over that and I don't think I ever will. I finally felt ready to place his ashes in the urn we bought. It's a sculpture of a mom holding a baby and his ashes are in the bottom. It did give me some sense of peace. I had been keeping his ashes in a fireproof safe. I was just so scared of losing them if anything ever happened, but I can't live my whole life in fear of everything. I don't think I will ever accept the fact that he was taken from us long before his time.
I love you, my precious angel. You are my light. I know you're watching over your little brother or sister. I hope you're having fun playing with all the angel babies and that grandma is cradling you, loving you and spoiling you rotten. I can't wait until the day that I can hold you in my arms again. I love you with all my heart, my light.
I love you, my precious angel. You are my light. I know you're watching over your little brother or sister. I hope you're having fun playing with all the angel babies and that grandma is cradling you, loving you and spoiling you rotten. I can't wait until the day that I can hold you in my arms again. I love you with all my heart, my light.
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