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  1. #21
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    I cut my hair off. I like it!

    I just love getting hair cuts. I love talking to the stylists. I got a great one this time. She just went on and on about her rotten DIL. We talked a lot about Keiran. She didn't know the circumstances so she talked to me like I was having a healthy baby. It was wondersul. I realized that this was the first conversation I have had like that. Most of the time I talk about what we are going to do in the hospital and what plans we have made and what medical issues that we are facing, blah, blah, blah. Anyway, she told me NOT to use Johnson and Johnson because there is actually something in the shampoo that numbs the eyes so that the baby doean't feel the pain. I'm not sure of the truth behind this (I am going to have to google it), but she said not to buy it. She also gave me a bunch of other motherly advice and it was so nice to just enjoy being pregnant for a little while.

    That's it. Just a normal conversation with a nice hair stylist made my day.

  2. #22
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    Well, yesterday was the first day that I woke up feeling kind of positive about Keiran's health. I may be fooling myself, but I am willing to steal a little happiness right now. I was in a store and actually didn't want to cry when I saw the baby clothes. That's a big step for me. I even thought about buying her something. Another huge step. I think that I am still a little scared to go that far though.

    Maybe by being so positive I am making it worse if things do go as the doctors think. Then I think, can it actually be made worse? I really don't know.

    I haven't had the courage to research what the small placenta and elevated cord pressure means. I know that it isn't good. I don't want to read the horror stories. I will just wait until Wednesday when she gets the echocardiogram. I need to get out some paper and write down everything that I am wondering about. Maybe I'll need a notebook......

    My peri is amazing. He is one of those doctors that you know really found their true calling. If anyone that reads this needs a peri in the Austin area, just let me know. I think this man and his staff are all wonderful.

  3. #23
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    Pardon me, but this has been a ****ty day!

    Here is my post from the Feb/Special Needs and Birth Defects boards

    Well, there wasn't any good news today. It turns out that the small placenta is causing the cordblood pressure to be very high. There is supposed to be bloodflow through the cord during the beat of the heart and in between beats. The pressure is so high in Keiran's cord that in between heart beats all flow stops. Her heart is already enlarged from working so hard. Eventually, the blood pressure will get so high that the blood flow is going to reverse and it will lead to congestive heart failure.

    His best guess was that she will be with us another two weeks. He said she could easily last longer or go more quickly. There is no real way of knowing.
    Why my day is ****ty is obvious. I can't even write right now.

    On my way home it started raining for the first time in probably a month. It felt like the world was crying with me.

  4. #24
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    I just want to curl up into a ball. I am so tired of being strong. It hasn't really gotten me any where, has it?

    I am really thankful for the last week. I got to have hope. It was wonderful while it lasted. I got to enjoy her liked I hadn't been able to since we got the news. She deserves that.

    When the doctor told us that we only had about two weeks left, I wasn't really surprised. I think that I knew something was wrong. I knew that everything was too good.

    Now I am torn between wanting her to fight and make it as long as possible and just wanting her to let go. She has fought and fought in her short little life. Why should she have to fight anymore? Wouldn't it be so selfish of me to want her to hold on? I feel so sick thinking about either possibility. There is no easy way out and that is becoming more and more clear with every passing second.

    It didn't really hit me until today. I knew yesterday that I was taking it all too well. I knew that it would finally sink in today. Thank God that no one really asked about my appointment. I think that I might have had a breakdown. There is one coming anyway, but I don't want to do it at work or in front of the kids. I know that they would worry about me and ask a lot of questions. I did tell three people at school what was going on through e-mail. I know that I need to talk to my principal, but he is a very religious man and I just can't take him telling me that God makes miracles. I know this. I am not asking for one. God and I have been talking and we have come to an understanding. Butt out.

    My lupus is pissing me off (not that we have ever been frinds or anything). Because of it, I run fevers when I have too much stress. Fevers make me cry more easily. Crying increases the pain and prolongs the fevers. It is a wonderful cycle. My arthritis is kicking in too. I can't take anything for it. Aleve is a big no no. When it rains it pours!

    I am trying like hell not to feel sorry for myself. I think I may be putting on a good front. I may also be delusional. Keiran is the real victim here. She is the one that isn't going to live. I am trying to remember that this isn't about me. She is such a part of me though.

    My heart is breaking for Trey. He hasn't even gotten to feel her kick yet. She weighs 13 ounces and isn't expected to grow any more. He never will get to feel her kick. I have felt the little flutters, at least I have that. I has been kissing my belly and whispering to her more. We are trying to get all of the love in that we can before she leaves us. How do you fit a lifetime of love in two weeks?

  5. #25
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    It is 3:20 and I am awake. I can't go to sleep because I keep planning Keiran's wake in my head. I am a planner. It is how I cope.

    How did everything go from so right to so wrong this quickly? I can't seem to wrap my head around it.

    I was also making a list in my head of things to be thankful for. Here is what I came up with.

    1. I am thankful that I have had this time with Keiran. I am going to be able to hold her and take her picture. Many moms do not have this luxury.

    2. This has brought me closer to Trey. We have always been close, but we are at a new level now. I am thankful for him every second of every day.

    3. I am closer with my family. I come from a close family to begin with, and two months ago I never would have thought that we could be closer. My mom, dad and sister have been amazing. I am so thankful for them.

    4. This has brought me closer to God. I can honestly see why tragedy can make people go the other way though. I have felt His presence in my life and am grateful.

    5. Even my in-laws have been great.

    6. I have weeded out the losers in my patch of friends. There were many. I have found my true friends in the process. I am thankful for that.

    7. I am thankful for pregnancy.org. This site has been amazing and so supportive. This has helped to make things so much easier. I have also "met" some awesome people.

    8. This experience has also forever changed me in ways that I don't even understand yet. I know that my priorities have changed dramatically and I have seen it in Trey too. It is a good change. I know that it will take me many years to sort it all out and really understand and see how this has touched our lives.

    I asked a friend I made through p.org how long it took her to feel normal again after her son died of T13. She told me that normal is never the same again.

  6. #26
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    I am still waiting for this to really sink in. I am too calm. I am scared what it will be like when it finally hits me.

    I have been feeling her kick lately which is odd because the doc said that she wouldn't grow anymore. I wasn't really feeling her kick before. I am so happy. Even Trey felt it. I am also feeling some growing pains. Maybe the little stinker will get up to a pound after all. I'm not getting my hopes up though.

    I think that waiting for her to die is the most awful thing. I am even too scared to use the doppler and check for her heartbeat.

    We took a picture this morning, printed it out, framed it and hung it on the wall. Here it is.



    I love it!

  7. #27
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    Things are going as ok as they can right now. I am doing ok at work, but things are really getting on my nerves very easily. I am normally pretty laid back. Maybe that is what is why I am still partially sane.

    I realized that I should probably pack a hospital bag. I think I may ask Trey to do it. I can't handle these things anymore. I probably also need to buy something for Keiran to wear after she is born. Where do I buy clothes for a 1 lb baby?

    We painted the living room and dining room. It looks really nice. I want the house to look nice for Keiran's wake. That sounds so stupid, but it gives me something to do.

  8. #28
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    I am so overwhelmed by everyone's kindness. I can't believe how wonderful and supportive everyone is here. I am just at a loss for words.

  9. #29
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    Well, today makes it a week since the doctor told us that we have about two weeks. I really like the man, but I sure hope that he's wrong. He even told us that he couldn't say exactly.

    We ordered her an outfit to wear in the hospital.
    http://www.preemie.com/get_item_pyumxs-sog.htm
    I thought that the price was outrageous, but she's worth it. I love it because it is so simple. Trey liked it too.

    I just read in someone's signature that October 15th is preganancy and infant loss memorial day. I sure hope that I can wait until next year to personally observe that one.

    Trey and I had a huge talk last night. He finally opened up to me. I was thinking that he was taking all of this so well and I was honestly starting to feel so alone. He wrote me a letter so that he could get it all out. My sister actually suggested it to him (thanks, Jen). He told me that he keeps blaming himself just like I do. We both know that it is so stupid, but we still do it. My doctor referred to it as "mommy guilt." Women always try to take the blame. I guess Trey has daddy guilt. He was also mad at himself for not talking to me about Keiran very much, but being able to talk to people at work that asked about it. I told him that I understood. They aren't so close to the situation. It is easier to talk to someone that is not me sometimes. I totally get it. He hates to see me sad and when we talk, I cry. He thinks this means that he is making me sad. I told him that I am always sad, I just show it with him. He also hates that he can't protect Keiran. She is his little girl and he can't make her better. This kills me to think about. I know that dads and little girls have such a special relationship. This breaks my heart so much. My dad must be feeling the same thing right about now. He also felt guilty for not being able to talk to me before.

    Now I am feeling the guilt for thinking that I was alone. In retrospect, that was a stupid thing to think. I know what a sensitive guy Trey is and I should have tried to talk to him myself. I have been so wrapped up in me. I hate when I do that. Thank goodness he was the bigger person and took the first step. I am so lucky to have him.

  10. #30
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    Today wasn't a very good day.

    I got another child in my class. I am now at the state maximum of 22. 22 kindergarteners with no aide? Sheesh. I have the biggest headache. The first thing that this kids tells me is, "They let me do whatever I wanted at my old school." I said, "This isn't your old school!" The school district that he came from called too. They were telling the office that the mom is a pain in the rear and that there was already an attendance officer after them for all of his absences. One of the first things that she said was, "He throws up when he is nervous and he had a hard time adjusting at his old school." Umm, ok. He adjusted just fine. He is a bit of an odd duck, but I don't care. I can already tell that the kid ISN'T going to be the problem.

    I was reading a magazine that came in the mail today. There was some random article about false eyelashes. My mind wandered and I was picturing Keiran in her little gown that we bought her. I threw the damn magazine against the wall and burst into tears. Trey is now kind of used to this so he just held me while I sobbed.

    Her heartbeat was still strong when we checked it this evening. My sister asked me what I was going to do if I couldn't find it. Hmm, I hadn't really thought about that. I told her I guess I'd call the doctor. The fact that I haven't thought about it is further proof that part of me still hasn't accepted it. I don't know how to make it happen for myself though. Do I even want to fully accept the truth? I guess when it happens I will have to. I guess that is what it will take. Some pathetic Pollyanna part of me still wants to believe that it will all be ok. I'm not sure that is healthy.

    Trey recommended that we talk to a grief counselor. Once again, where the heck am I going to find one of those?

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