Happy Freaking Halloween

So, I was supposed to be hearing from Dr A today, but she had an emergency and then left early. I love how the receptionist asks if its an emergency. To me it is. Now I have to wait all weekend before I hear anything. I hate waiting. I try Dr. M and she is gone for the weekend too.

So Ive decided that I am going to just forget about Drs. today and I am going to have a great Halloween. I am going to carve another pumpkin really quick. Get the candy ready. Dress my little soldier and enjoy the weekend. Hopefully it goes by fast though :)

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Now Im scared

This morning I get a call from Dr. H.
He quickly notes how out of breath I am and asks me what I am doing. My reply.."I was laying down and only got out of bed" I then tried to catch my breath, but I was already busted. He asked how I was feeling and I told him that I started having pains in my upper abdomen and my sides. Before it was just uncomfortable.

He said he had spoken to both the other Drs and told them that he felt a shunt(TIPS)should be placed in my liver to relieve the blood build up, but they both said it was to risky. They he asked me if I would be willing to go to Houston or Dallas if he could find some one to do it. As long as its safe for the baby I agreed and he said he would call me back.

An hour later, he calls back to tell me that he is getting frustrated becuase evryone is fighting him on this because I am pregnant. He is adamant that it needs to be done soon, but because it is done though Xray and I am pregnant no one will bite. He ask how far along I am. 27 weeks now and he starts to tell me that babies born now can survive and he would like to have an amnio done to see if the babies lungs are developed enough. He says he will talk to the specialist about it. But tells me that even a few more weeks will hurt and he doesnt want to wait. He also told me that he has talked with someone at the Transplant Center already. And he will set up a meeting for me to meet with someone there.

So now Im scared. I have heard of babies being born at 28 weeks. Yes I know there is a million new ways to keep them safe now, but I feel like I have failed him. I want to keep him inside me, safe and sound, for as long as he needs to be. David sided with the Dr and reminded me that my life is most important and that if the Drs say deliver now, that he agrees. I see where he is coming from, but it doesnt make me feel any better. I dont want to risk it.

What if we deliver him early, my tubes are tied and he doesnt make it? Im just getting used to the fact that he will be our last, I want him to have the healthiest start he can get. And that means keeping him inside of me, where he is doing perfectly fine. I could understand if he was not OK, but he is perfect. Growing and kicking so strong. And I can take the pain if it means him surviving. But I get the feeling that Im on this side alone. And I know I have to do what the Drs decide. Everyone thinks Im crazy, but I cant help how I feel. Hopefully tomorrow Dr. A has good news.

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Updates

notes from my appts that next week

Dr. H(GI) 10-20-08
*Good news is my liver is working at almost 100%
*Liver did not go into shock and fail because blockage was slow(over weeks or months)
*Liver rerouted blood flow by creating tiny blood vessels around clots
*Now on 3 week blood draws to measure Liver enzymes for the next 3-6 months
*Will not know damage until after baby is born
*Depending on damage, liver transplant is possible
*Recommends C-Section and tubes tied...pregnancy could be fatal
*Looking at a liver transplant in the future. Maybe 5 years or so.


Dr. A (OB) 10-21-08
*Baby's heartbeat is 140
*He is getting enough oxygen and has enough room
*Referral back to High Risk
*Will wait to see what specialist says
*Agrees with C-Section and tubes tied. (its sinking in)
*Will talk with other Drs. and have plan by friday
*Blood thinners are daily injections called LOVENOX

Dr. M (High Risk)
*Baby looks great
*Measuring 27 weeks instead of 25
*Hoping to put off delivery till 35 weeks
*Referral to Hematologist
*Talked to Dr H. He wants a shunt in, says its is genetic and I need blood thinners
*Now on monthly visits
*No exercise or straining of any sort, but not confined to bed

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The call

Dr H called me that night around 6. I knew it couldnt be good considering the office closes at 4. The first thing he says is "Im very impressed". By my liver??? Thats a good thing right? Not. He apologised becuse the only word he could use to explain it was "HUGE" The the proceeded to tell me his diagnosis. So here I am writing down everything he says.

Budd Chiari Syndrome
Blocked viens leading from liver to heart
Liver is huge as well as spleen
Chronic
Slowly clotted so liver didnt get shocked.
Need follow up

I cant even explain how I felt hanging up the phone, I waited for him to hang up first, just incase he started laughing and said this was all some kind of joke. I hung up and walked downstairs. David was leaving for work..do I tell him now or when he gets home. My knees were weak and my hands were shaking. I explaind to him and his mom what the Dr had said. He asked when I had to go back and gave me a kiss before he left. Mom asked me some more questions after that, my voice was cracking and I could barely talk. She joked that she would have been crying by now, but I had already told myself I wasnt going to cry. Not yet.

I made the calls to family. Everyone had a million questions and I had no answers. Everyone asked how David was, but I had no idea. David is my rock and I expected nothing more than a straight face and a kiss. As his wife I knew he wouldn't show any emotion but as a woman I wanted him to hold me and tell me everything was going to be alright. But I reminded myself that he is my rock and if he crumbles I would crumble right along with him. He has such strenghth in times like theses and I knew he would keep me strong too. We will get through this....

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Step 2

So my next stop took me in for my regular check up with my OB. She said she was reffering me to the GI Dr down the hall, just to be sure. I mentioned my difficulty breathing, light headedness and pressure in my abdomen. She said that while she was surprise it was starting this early, it was all part of being pregnant. Now having being pregnant before, I wanted to say something, but she is the Dr after all and I know not all pregnancies are the same. So I figured I would just bring it up to the GI Dr and see his take on it.
The 2 weeks in between the appointments were hell, but the day finally came. Nerves were setting in but I kept telling myself everything was fine. I mean seriously how bad could it be right? The GI Dr was great. He made me feel so much better. He expalined that what might seem like a large liver to some Drs, is perfectly normal for me. He told me how studies come up with the "average" size and said that most times someone is reffered to him with a case like mine it turns out to be nothing. 5% he said turn out to be something more. He still hadn't see my ultrasounds yet, but he felt around my abdomen and said he wanted to run some labs. After I had all that done, he still hadn't gotten my pictures, so he sent me home and promised to call as soon as he went over them. So off I went to wait again.

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How it all started

This was all started when I went in for my 16 week ultrasound. We knew something was immediately up when in the middle of the session, the tech made some excuse about forgetting some paperwork and pretty much ran out of the room. When she came back I asked if everything was OK and she told me a Dr would come in and explain everything to us. Then she told us we are having another boy! I saw two legs and two arms, a head, toes and fingers, a heartbeat...he looked perfect. Confusion set in and we waited for the Dr. In comes the Dr and the first thing she says is "The baby looks great" So here I am thinking OK so whats the problem...

The problem was my liver and spleen were large enough to throw up a red flag. She explained to me where they were supposed to be and where they were. She told me that she would send my report to my OB and we would go from there.

So I got dressed, got my pictures from the tech and we were on our way. My guess was they would give me some meds to help and that everything would be just fine. Little did I know...

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