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
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.