Hospital food anyone??

Thursday the 25th I was admitted to the hospital, my headaches were getting ridiculously worse, and the oxycodone wasn't touching it. They did another MRI of my head and compared it to the one I just had on the 11th. The clot had gotten larger and was therefor making it very difficult for my brain to drain as it should. The pressure was what was causing my headaches. They started me immediately on IV heparin to hopefully make sure the clot didn't get any worse. B stayed with me for the first 2 nights. and Bubba stayed at my parents house. I was surprise B wanted to stay overnight with me. The"chairbeds" are not comfortable at all. But it was nice to have him here. With the clot being in my brain there is always the risk of a stroke.

I had just started a new birth control pill on the 14th and even though it was progesterone based (as opposed to estrogen which has been shown to increase the risk of clot) the doctors thought that this pill was the reason the clot grew, even though I was on blood thinners. The doctors came in and told me that I was to stop taking the pill altogether, and to never try one again. They then said that they would recommend an IUD. I told them I wanted one too but that my PNH specialist told me that it would increase my risk for infections. They then tell me that I should look into getting my tubes tied. Even thinking about that makes me sick to my stomach. I am 25 years old. It's just heartbreaking. I know deep in my heart I should never have another child, before they wheeled me into surgery to deliver my miracle they flat out told me I had a 50/50 shot of making it through the surgery. So I realize that I am extremely blessed to have one child and maybe I'm being greedy, but I don't really care. I'm just being honest. In the back of my mind I keep thinking about how I would still be in "child bearing years" for another 10 - 15 YEARS. It's just not fair. B and I have talked about surrogacy and we even have one embryo on ice, but I know nothing about surrogacy or it's cost, as I'm sure insurance won't cover a cent. Then there is also adoption, and I really do think it's a wonderful thing. But I'm gonna be greedy here again, and admit that I dream having a little girl (or even boy) who look like me. Z is a spitting image of his father. B has often asked me if I wanted to take a maternity test to make sure he is really min. :) I just desperately want to have another child. I often day dream that my illness would just go into remission and that I'd be able to have children without a care in the world. Or I think about how if I ever do get a bone marrow transplant, would I then be able to have kids? It's just not fair. And today I'm allowing myself a "feel sorry for me day". Most of the time I remind myself that as many struggles as I DO have, my life is still incredible and I am more than blessed. B and I talked and he will call for an appointment get "snipped". He said it makes more sense, and is safer for him to have the procedure as opposed to me. And at least it is reversible if anything were to change.

I miss being pregnant. I think this is because I know it will probably never happen again, but also I think it's because I feel robbed in a way of my pregnancy with Z. I was only pregnant for 28 weeks and 3 days.. I didn't get to be huge, I didn't get to be awake for the delivery, I didn't get to hear his first cry, I didn't even get to see him the first day he was in this world, B wasn't allowed in the room during Z's birth. He didn't get to cut the chord. I didn't get to breast feed as my milk never fully came in. I think this was because my body was just too sick ad probably in a little bit of shock. If I used hospital pump I could get some milk, and I gave him everything I could for the first month of his life. But I missed that bonding. And knowing now that all of those experiences are probably the only ones I'll have,it just makes me sad.

Today my headaches FINALLY seem to be getting better. This more than likely means that the blood in my head has made alternative routes to drain so the pressure will decrease. I am hoping to be released tomorrow. I miss my little guy alot. Hope all is well with everyone.

Also... I am new to this whole online blogging thing...I am trying to "make friends" but I havn't really figured out how to go about that yet. Any suggestions? Thanks alot.

Ahhh the story of the MIL

I have had it. I love the woman because she raised my husband and he's an incredible man...but I think that's the only thing I like about her now. Here are a few (definitely not all) of the stories she's blessed me with.

My MIL and I always got along. I truly thought she was a nice lady, and I could never understand why my husband B would always tell me that she was crazy. Well... now I get it. My MIL was always really nice to me, and I thought we got along great. Then one Easter while B and I were dating I came to dinner at his parents house with him. She completely flipped out! She scolded B for not calling first, and asking if I could come over. And she didn't pull him aside and do this... no, she proceeded to have this talk with him in front of everyone. Talk about feeling unwelcome! Well, we eat and life goes on. A few weeks later MIL pulls me aside and tells me that I am ALWAYS welcome at her house, and that an invitation is never needed. Well she has a funny way of showing it, but hey maybe that was her way of apologising. I'll take it.

Well, my MIL had 4 boys...no girls. So when I come over I like to compliment her on the "girly" stuff that guys usually don't notice. So I compliment her new framed painting on the wall and her new choice of color she painted the family room, and maybe let her know that her table centerpiece is very nice. And I am being truthful, the woman has some good taste. A few weeks later B tells me that FIL talked to him at work and that MIL apparently thinks that every time I come over to their house I walk around looking for something to comment on. And that she feels like her house has to be in perfect order to have me come over. WOAH lady, I was simply complimenting you. Why the heck are you being defensive.
Hmmm what story next... OH yeah, well one year after B and I had gotten married we went over to the in-laws house for Thanksgiving dinner. I had been to the apple orchard recently and had made a few apple pies. B told me they were his dad's favorite, so I thought it would be nice of me to bring one to dinner. We walk in and MIL and FIL are in the kitchen I say hello to them and tell them I made FIL's favorite, an apple pie. (This pie was made from scratch folks, I am proud of the pie) We'll I don't notice anything wrong with that. But oh boy will this pie come to haunt me over the years. This pie will prove to be a dreadful mistake for the years to come. On more than one occasion MIL has brought up this pie and told me that I made FIL something but did not make her anything, and that her feelings were hurt. Are you serious? At first I honestly thought she was joking. I mean come on, over a pie??!!

Well last November B's little brother decided to move from Illinois to California. So we went over to the in-laws house to see him off. MIL must not be taking the fact that her son is leaving her very well because she proceeds to yell at me. She walks out of her house and I am holding my little peanut and she says to me " I dont think this is very appropriate." I have no idea what she is talking about. So I ask her what she is talking about. Now she tells me that "tonight I will get to hold my baby in my arms and her baby will be in California." I will admit it, the woman frightens me and intimidates me. I am not a confrontational person. I am now completely lost. her "baby" is 25 years old... my baby was 5 months...is she really comparing the situation. So B starts to see that there is commotion up by the house so he walks up and asks me whats wrong. I probably had the deer caught in the headlights look on my face. Well unfortunately for me the way I tend to deal with being yelled at and or confrontation is to cry. So I tell B I had no idea what was wrong and proceed to cry. Now B is furious... he knows his mom and he knows how she is. So he says that we are leaving. MIL walks in the house and locks the door. I realize I need to go get my diaper bag and purse soI walk in through the garage. MIL says in the meanest voice ever,"you bitch"... I say to her "I'm not a bitch and neither are you". (which I was proud of for not stooping to her level) I don't think she realized I was in the house and she says... I wasn't talking to you. Funny because I was the only other person in the entire house. I should have asked her if she was talking to one of the voices in her head. Then she talks for about 30 minutes about how I criticize her painting, I didnt bake her a pie, how she's the bitch and FIL is on a pedestal. She moves from one thing to another and really makes no sense. finally B comes in and tells her that until she see's someone for mental help we won't be coming over anymore. I was completely devastated at first. I didn't want him to give up his family. But he has told me over and over that he has been dealing with that for 32 years and that it's not me it's her. Now MIL and FIL are saying if we don't want to see them they don't think it's fair for us to keep their grandson away from them. ARE YOU SERIOUS! If they don't want to have a relationship with me... or even just be civil... why should I let them see their grandkid? Why should she get everything she wants which is only her grandson and not have to change anything. As much as I know how kids need their grandparents I was glad when B decided that no, she needs to get help first. What kind of parents would we be if we allowed her to see him when we truly felt she needs some therapy.

I have been doing research online and have decided that she has BPD. Borderline Personality Disorder. I feel a little sorry for her as she doesn't "believe" in mental health doctors. And as most people with any mental condition, doesn't think there is anything wrong with her. I hate that B hasn't talked to his parents in over 2 months, but he says it's for the best.

Over the years I always made excuses for her, like maybe I should have done this, or maybe she just had a bad day. But I have finally realized that there is nothing different I could do. I honestly didn't do anything wrong. That was a hard thing to accept. I still love her... I just wish she'd get help. She could be a really great person.

"Good News" ... I guess

We'll after a MRI of my head we've concluded that there are no new clots. This is "good news"... however the old clot is still there and doesn't seem to be dissipating much at all. Since I am already fully antocoagulated there isn't anything else to for it. So blood doctor told me to enjoy more caffeine, wrote me a prescription for 200 oxycodone, and sent me on my way. My headaches however are barely helped by the plethura of narcotics. Headaches have been pretty much constant for about a month now. I'm just hoping that I get approved for the new drug (Soliris) that is supposed to help with many of the PNH side effects. It is supposed to be the "miracle drug".

On a lighter note... my little miracle got evalutated Friday. Because he was born so early he is eligible for free* services from the state. In case he needs any cognitive, motor, or neurological therapies. ( *free for some, but my husband B makes "too much" money so it wouldn't be free for us if a plan is needed) Right now he just get's evaluations, which are free. Although he is actually 7 months old, he is really only 4 months old adjusted. He is showing to be at about a 3 month olds level. Which is not alarming by any means. She asked if he rolls over and I told her that he has rolled over twice. Wouldn't ya know it she puts him on his stomach and he rolls over right then. I can already tell he's going to be a show off. He has to get another shot in the morning... his flu booster.

Well... time for another pain pill. Take care.

Headaches and Nausea...

If only it were because I was pregnant. :) But my body needs a couple years of healing before we try that again. I have been having some abdominal pain, nausea, and headaches on and off for a few weeks now. Normally this wouldn't be a problem, but last July I was hospitalized when they did a MRI of my head and found that what I thought was a terrible headache was in fact a blood clot in my brain. Fabulous. It's things like this that are making me become a hypochondriac. So... I have an appt. with blood doctor Thurs. and I'm gonna call and see if they can do another MRI while I'm there. People with PNH often get headaches and abdominal pain and there is normally no cause behind it. So I'm hoping that these are just normal PNH pains and not something more serious. Its a little nerve racking, being 25 and needing to keep an eye out for signs of strokes. I'll keep you posted.

Best baby ever??!!

Miracle baby turned 7 months old yesterday! I was nervous when my little peanut finally came home from the NICU back in August. I was afraid that I wouldn't be able to keep up with his schedule. With my PNH I know that I require more sleep than usual, and add the needs of a newborn baby(let alone a preemie), well it's enough to make you begin to doubt yourself. Well I think I only had to wake up to feed him one time each night for a month and all of a sudden Chunky Monkey was sleeping through the night. Not only SLEEPING through the night... but sleeping 10...11... 12... hours! For about the past 4 months he has slept through the night. And for the past few weeks I have even been able to put him in his crib before he is asleep, and he falls asleep on his own without crying! He amazes me. I am blessed.