20perfectdays

Life after NICU and losing my baby girl

Christmas 2011

WOW what a waste. I already knew that Christmas was going to suck, but I didn’t know that at the end of the day, I’d be wishing I could go back to Little Falls and lay next to my baby girl for the night. I seriously can’t believe the hell that I have to go through anymore. But, let me back up first.

So I worked on Friday (went pretty well), came home, and then we went down to my in laws for the weekend for Christmas time. All went fine and dandy if you ask me. A few more…interesting…moments, but who doesn’t have that? It reminds you that you are with family and while we don’t always get along, we are a team, up against the things that try to tear us apart. Anthony made out like a bandit, I got to embarass someone (Love ya, Kayla!), and we all had fun in the end.

We stopped by to say Merry Christmas to Bailey and then head home. While waiting for a photo to post (which I need to try again, stupid phone) I check my facebook. Imagine how badly it hurt me to see someone not have the respect for me to understand that IN MY POST WISHING MERRY F***ING CHRISTMAS to EVERYONE and that I MISS MY BABY GIRL, someone decides to bring up that I haven’t sent out Christmas cards. Nevermind that I haven’t sent one out in YEARS, evidently I’m supposed to not only send them out, but screw the photo I was working so hard to get of my family to PUT IN THE DAMN CARDS. This is the same person who thought that they deserved a personal call and update during the whole pregnancy, the whole time I was in the NICU caring for my daughter and trying to be a mom to my son, AND WHILE MAKING ARRANGEMENTS FOR MY DAUGHTER’S F.U.N.E.R.A.L!!!!!! Not her coming home party, her WAKE and FUNERAL. Not for her to be released from the hospital, ready to come meet the family, HER WAKE AND FUNERAL. Nevermind that I had set up a blog and made it totally public for people to read up on what was going on with the pregnancy and beyond. Nevermind that I had a website set up for updates and did my damnedest to update it often (around being in the most stressful situation of my life, struggling to even remember to eat, sleep, and pump), AND facebook updates. Nevermind any of that, and screw that I had tried to set up a phone call network for anyone who fell through the cracks. Am I really supposed to be responsible for idiots not understanding that I don’t have time to call each and every person, give them the full update, minute by minute, when I could barely find enough signal in the family lounge to call the dr that delivered my baby and BEG for pain meds!!! SERIOUSLY! Over a damn CHRISTMAS CARD!!!

If your life really revolves around something so questionable and so small that you don’t even give a damn that the person you are harassing about a damn card is going through an EXTREMELY hard time. Imagine this. You lost your child just days after giving birth. a difficult pregnancy in which you were told that your baby will have to undergo serious surgery (open heart surgery), but baby will be ok. Baby will be able to come home and live a long, happy life and then after you go through all that and get your hopes up that things will actually work out, only to have your whole world go upside down, your worst nightmare becomes your reality, and you watch your newborn baby struggle every day to get better, open her lungs, and beat a disease that had her days numbered from the start. Now, also add in there someone constantly pestering you for personal updates and basically refusing to pull their head from their own hind end and realize there are more people in the world than themselves. Imagine you are going through one of the biggest family holidays (and until now, I was able to write this without crying) and your family is broken. Your baby is BURIED at the EDGE OF TOWN, FORTY MINUTES from where you lay your head at night. You have to start going through the times you never imagined you wouldn’t have your baby. She’d be eating solids, rolling around, maybe sitting up on her own, and maybe even scooting. She’d be getting teeth, have long, beautiful red hair, be a spitfire, and she’d be having a blast. Instead, she’s in Heaven, enjoying a Christmas we can’t even imagine, and I’m here on Earth, trying to take care of my family, missing the parts that were taken away from me WAY too soon. Now how important is that damn Christmas card? You really going to hassle me about something so trivial on facebook? Luckily, I have people to watch my back. Now to cut the cancerous people out of my life. I’m not kidding either. I’m DONE.

I’ve had enough hell come through and ravage my life. I don’t need people who SAY that they love me and care about me and my family taking time to cut me and my family down even more. Making me wonder why I even bother. Well, I’m done bothering. Its time to cut that crap out. I don’t need people trying to make me feel worse about my situation. Especially when they don’t even have a CLUE what I’m dealing with.

Bailey, Baby girl, I miss you so much. Today was the hardest holiday yet. You should have been there. You should have been sitting there, surrounded by wrapping paper. You should have been playing with toys and enjoying your first Christmas. I just wish I could have that time with you back and get to hold you again. I know each and every day I’m here is one less day I have to wait. I hope you and your sibling who was miscarried are having fun up there with Jesus and the other amazing souls up there. I can’t even begin to imagine the celebration up there! I wish I could, but I know its one of the best ways to celebrate. We’ll be going to take down your tree after Papa gets off of work, but don’t think that its because of anything you did. We don’t want people to steal your tree and take or destroy any of your amazing momentos that have been left there.

Did you see that stepping stone that Cousin Holly and Cousin Jocelyn made for you and put out there with the butterfly? They did such a good job, it looks AMAZING. I think we’ll try to leave it out there for a while.

Sweetest baby girl, please know that we love you, we miss you, and wish we could hold you again. But you keep having fun up there and we’ll be along when our time comes and then, when we are together again, it will be the sweetest celebration. All the love a mother can give!

 

 

P.S. Anyone wants to tell me I shouldn’t advertise this in public, just remember, I could be naming names, pointing fingers, and really laying into someone in public. Be thankful I haven’t taken what will be the private conversation and put that out there. Bottom line? THINK before you post about something so trivial. You think I care about sending out my Christmas cards on time? You should be glad I even thought about sending you one. Count your lucky stars if I don’t send one to you…in pieces. And thanks for the lovely idea of giving stickers to my toddler. I love finding them all over the house, where the shouldn’t be. I’ll remember that.

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My Mom Lies

Ask My Mom How She Is
My Mom, she tells a lot of lies, She never did before. But from now until she dies, She’ll tell a whole lot more.
Ask my Mom how she is And because she can’t explain, She will tell a little lie Because she can’t describe the pain.
Ask my Mom how she is, She’ll say “I’m alright.” If that’s the truth, then tell me, why does she cry each night?
Ask my Mom how she is, She seems to cope so well. She didn’t have a choice you see, Nor the strength to yell.
Ask my Mom how she is, “I’m fine, I’m well, I’m coping.” For God’s sake Mom, just tell the truth,                                     Just say your heart is broken.
She’ll love me all her life, I loved her all of mine. But if you ask her how she is, She’ll lie and say she’s fine.
I am Here in Heaven. I cannot hug from here.  If she lies to you don’t listen, Hug her and hold her near.
On the day we meet again, We’ll smile and I’ll be bold. I’ll say, “You’re lucky to get in here, Mom, With all the lies you told!”
-Unknown

Don’t Tell Me
Please don’t tell me you know how I feel,
unless you have lost your child too,
Please don’t tell me my broken heart will heal,
Because that is just not true,
Please don’t tell me my daughter is in a better place,
Though it is true, I want her here with me,
Don’t tell me someday I’ll hear her voice, see her face,
Beyond today I cannot see,
Don’t tell me it is time to move on,
Because I cannot,
Don’t tell me to face the fact she is gone,
Because denial is something I can’t stop,
Don’t tell me to be thankful for the time I had,
Because I wanted more,
Don’t tell me when I am my old self, you will be glad,
I’ll never be as I was before,
What you can tell me, is you will be here for me,
That you will listen when I talk of my child,
You can share with me my precious memories,
You can even cry with me for a while,
And please don’t hesitate to say her name,
Because it is something I long to hear everyday,
Friend please realize that I can never be the same,
But if you stand by me, you may like the new person I become someday.
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Not Compatible With Life

So Adam and I were talking on the way home from the Bloom Family Christmas Bake, talking about the things we’ve found on Bailey’s headstone, the amazing people in our lives, and a gift that touched me deep down. We were talking and I had just read the poem that came with that touching gift and while wiping away the tears, I mentioned to Adam something he already knew.

“I’d do ANYTHING to have Bailey back”

I don’t need to mention it to him. He knows. He feels the same. It made us both think back to those days. Spending every waking minute in the hospital, waiting for any news one way or the other. Praying. We also talked about how great it was that we were able to baptise her and give her her last rites. Adam also mentioned something that bugged him from the first moment he heard it, and it still makes him furious.

“Not compatible with life”

Here’s where I’m going to lay it all out. We had started hearing this statement as a possibility about a week or so before her diagnosis was in. The first time I heard it, I glazed over it. My brain shut down. I couldn’t wrap my mind around the chance that I would have to say goodbye to this little girl who had changed so much about my life and my whole world. Dr George said it many times to me, but I would just nod my head. I just couldn’t get my brain to absorb it. I can’t speak for Adam, but he told me that it made him so upset because he felt it was the dr sugar coating it. That basically, the dr didn’t think she was going to make it. The words hurt me because they cut so deep, they had been spoken so many times, and I just couldn’t get it through that something was VERY wrong with our situation. It still hurts so much because its also like the drs were saying “She’s too flawed for Earth”. No, they didn’t SAY that, but that’s how it boils down in my eyes. And I know that’s not true. Her body was flawed, her spirit was too much for Earth to handle.

This holiday season is going to suck. Badly. This time last year, we had just announced we were pregnant, had confirmed that baby was there and things were looking good, baby was due around our anniversary, we had something amazing to look forward to, and my family was being built. Endless possibilities, hopes, and dreams come with a new baby. I was excited, knowing this was our last holiday season as a family of 3, we were expanding. Well, that’s what was SUPPOSED to happen. We all know that isn’t how it all boiled down. All my hopes, dreams, fears, everything went up in smoke when her diagnosis came in. Every birthday, holiday, firsts, everything. Gone. No first words, steps, teeth, days of school, dates, wedding, kids… Nothing. That entire branch in our family tree died. Nothing can grow there. Nothing can come of it. OUCH.

I still never imagined that I would be in this position. I should be exhausted taking care of 2 kids with endless energy, struggling to get through the day to day without naps like crazy. I should be thinking about what foods to try with her next, encouraging her to start new milestones, and trying my best to keep up with Anthony. Instead, I’m constantly wanting to go out to her headstone to see what is new, keep her company, and just talk to her. Yes, I know its her body that lies there, not her spirit. But I gave birth to that body. My body nourished that body. I was the first to hold that body. That body encased the most delicate, beautiful spirit I could know. That broken, flawed body is the whole reason we changed our plans on where to deliver, sought extra medical care, and in the end, got 19 additional days with her. Had we delivered in Little Falls, she would have died that first day. She fought against that body. She fought to survive. She fought through those last few days to give us time to figure out what was wrong and let her go, peacefully, without pain or struggle. I’m starting to have bad dreams again. I don’t know if its because of dread of the pending holidays, thinking about what could have been, or maybe just thinking back to what I’ve lost. Either way, I’m exhausted because Anthony hasn’t been sleeping well at all (waking up from 3-6 am nightly, staying awake the whole time) and the dreams. I could try to go to sleep earlier, but that would mean more time for dreams, and I just don’t want that. I’m hoping that by putting it out there, that its cleared from my mind.

I’m not going to stay up any longer. Anthony has came out of his room once so far, which means its time to try and get things ready for bed in case it turns into a long night. Pray that this night breaks the pattern and he sleeps until at least 7 or 8!

Bailey, I send all my hugs, kisses, and love to you up there. We miss you so much and can’t wait to see you again when that time comes. Until then, keep dancing, smiling, and carrying on.

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Time for a little honesty…

So, I’ve been doing a lot of thinking and I’ve made some pretty big changes lately. I’ve quit therapy after the therapist and I got into it and I actually left resenting her (the topic we were hashing out has NOTHING to do with why I’m going to therapy, but she insists on bringing up things that don’t have standing with my current problems) and chose to stop going. I’ve also felt that she isn’t doing much to help. Here’s a hint, when over half of your session (50 mins) is her going over the previous sessions (all the way back to #1!) and not even getting all the details right, then spending at least half the time left in lectures, leaving maybe a full 10 mins for me to talk about things that are on my mind NOW, its time to think about either switching therapists or stopping. It was also getting to a point of idiocy in trying to get an appointment weekly, or even every other week! I was lucky to get in every 3 weeks or so. Pretty sad if you ask me. I could go to someone else, but I can’t really see any of it being any different. I’ll just blog. It helped me deal last time, we’ll see what it does this time. I can’t promise daily or even weekly updates, but at least I’m trying.

Another change I’ve been doing is embracing things around me more. I embrace my boys, knowing that my family isn’t all here, but my boys need me just like I need them. I’ve embraced the fact that Anthony sees Bailey almost nightly while I’m rocking him to sleep. He’ll talk to her, reach out his hand, blow kisses, or even just watch as she must be walking back and forth behind me. I think that the times that he’s been scared and staring off in the corner it may have been another family member who has passed that he doesn’t know or maybe its something about how she comes…something. I don’t know, but I’ve become more open to the fact that he sees her. A LOT. He talks to her, he shows he loves her and he delivers her messages. Like the other night when he was looking over by his dresser (in his room, the crib is on the far left, then there’s the glider, and then the dresser. No walking space between the furniture, really) and put his finger to his mouth and said “Shhh, Baby ok” (he could have been saying Bailey ok, but he was really tired and tends to slur the words when he’s that tired) and I suddenly felt the atmosphere in the room change. It went from just a room with us in it to a room filled with warmth. Dare I say it, it felt like so much love in the room suddenly. I instantly burst into tears. I also felt a tingling on my knee, opposite from Anthony. I can’t explain why, but I just melted into a puddle. I’ve been embracing that, don’t want to waste a moment trying to explain it away. Just letting it happen.

I’ve also decided that I’m done being mad at people. I’m done reading someone’s post complaining about waking up several times in the night and taking care of their baby and getting mad that they are complaining about something I want so badly. I’m not going to lie and say that I’m not jealous or that I don’t stop and imagine what it would be like for me to go through those things. Here’s why. I know that the people complaining aren’t doing it to hurt me. I know its them speaking to the whole world about it. No one is coming to me and telling me that I’m so lucky (they all know better), so I can’t be mad. Truth is, I very well might be complaining about the same things if things had turned out different. Now, that doesn’t mean that I don’t have a flash of anger and a thought telling me “OH! They should be so thankful! I’d kill for that”, but I have to remind myself that they aren’t saying these things to be spiteful. They are blowing off steam from a stressful situation (and anyone with kids knows that having and raising kids is HIGH stress!) and are doing it in a public setting like Facebook or their blog. I accept that a lot more now. Thing is, I finally figured out where to direct my anger.

I’m coming forward and admitting I’m still angry. I’m FURIOUS that I don’t have my baby girl. I’m FURIOUS that she was never able to see the light of day while alive. But now I know where I can put that anger. I’m mad at the world. I’m mad at the imperfect world she was born into. If it weren’t for this imperfect world, I’d have a beautiful baby girl sleeping in the pack n play on my side of the bed. She was taken because she was too special for this world. She was too perfect for such a twisted, messed up, imperfect world. I’ve shared this with Adam and he seems to be on board with that. I can’t be mad at God. After all, he blessed me with her pregnancy (as stressful and taxing as it was), a quick and safe delivery, amazing doctors, a NICU that tried everything they could and managed to narrow down what WASN’T wrong with Bailey, the amazing transport people and the nurses that came up to bring that amazing miracle down to a more appropriate NICU that could do what it took to keep her alive, the nurses in the U of M Amplatz that worked hard by her bedside to keep her going and loved her like she was their own, and all the people that surrounded us during this whole journey. God could have taken Bailey during the transport when her chest filled with air and stopped her heart. God could have told the nurses and everyone who kept going with chest compressions to stop. But he didn’t. He gave me 19 more days with that amazing little girl. He blessed me with so much more than anyone could know. I may not have her with me now, but my life is forever changed since. I can’t be mad at Adam. He didn’t do anything wrong. He tried to be so many things to Anthony when I couldn’t be. He spent a lot of time running back and forth, brought me things from home so I wasn’t so strapped for anything, he tried to go to work and keep things going there, everything. He was spread so thin trying so hard. I can’t be even the slightest bit upset with him. I can’t be mad at family because nothing they could have done would have changed anything. Most all the family got to meet her, even people from out of state. And people who didn’t get to meet her came to her wake and or funeral. I can’t be anything but grateful to them for making the effort. And most of all, I have to remind myself that I can’t be mad at myself. I did everything I could think of to give Bailey all the chances she could ever get. I did so much trying to be a good mom, ran myself ragged being there at the hospital 14+ hours a day, being away from my lil man, the whole 9. I have to resolve myself with the fact that what happened to her has nothing to do with anything I did while pregnant. I didn’t cause her health issues. I don’t always remember that it wasn’t my fault, but I try. I just wish I had spent more time doing this and that with her. Wishing I had wiped the blood off her, ask if I could bathe or dress her (mainly just a headband or something like that), read to her more, spent more time bedside, anything to be next to her more.

I think in the back of my mind I may have pulled away from her to save my heart from breaking. Or maybe seeing all the intensive work they had to do on her all day, it was too much for me to handle, knowing my poor baby was fighting so hard to wake up, move, do anything. I do feel guilt for not having done more for her. It wasn’t fair to her. Just something I have to deal with all the time.

I’m sure that anyone reading this could very well be thinking “Well, way to go, sounds like everything is perfect now”. Umm no. Far from it. I still have my moments where I melt into a puddle, don’t want to get out of bed or off the couch, don’t want to even get in the shower and clean up. I often think about how life could be different. I get mad when I hear someone complaining about something petty, but I just have to keep it in perspective. They haven’t had to walk in my shoes and I hope they never do. I still get upset though.

Today we went to the Christmas Remembrance Service at the funeral home. It was a very beautiful service. They had a few touching speeches, light candles while saying each loved one’s name, a small sermon, and capped it off with a special ornament for each family and a very nice lunch. It was really a great way for them to reach out and let us know that we aren’t just customers in their business. After the service and lunch, we did some shopping and went looking for a fake pointsettia for Bailey’s grave. Can you believe we didn’t find one at Walmart, Family Dollar, OR Dollar Tree? That blew us away. We are going to look a few more places and if we can’t find a fake one, we’ll just use a real one. We just don’t want it to look horrible with freezing, thawing, snow, etc. I’d like it to look nice for longer than a few days. If it would get cold and just freeze, it would probably be fine, but with the temps being wonky, who knows what could happen. just something to holidays for Bailey. I don’t know when we are going to be putting out her tree, but we’ll see.

That makes me think of something. I have NO idea who has been putting things out there on her headstone, but thank you. When you lose a child that didn’t get to meet everyone in your family, when you lose someone and feel that the time that they were here was just a dream, it means SO much to know that you aren’t the only person that thinks about that loved one. It makes that person more real. You don’t have to come forward, so I’ll just put it out there for all to see. I thank you. For anyone who doesn’t know, a few weeks ago, I went out to see Bailey’s headstone and saw a small crystal with a little angel, stars, and moon laser etched in there. Just in the past week, someone put 3 beautiful pink roses out there. We saw them on Friday, but they were cold and slightly frozen when we saw them, so we know it was a few days since they were put out. So thoughtful to have others doing things like this for us.

Well, I think I’ve shared the honesty. Just wanted to get it off my chest that things have changed around here. I’m not the same person I was before Bailey was born. I’m not even the same person I was when she was here.

Oh, and if you see one of my facebook status updates and think that you can compare our situations and think that I won’t bury you in your own self centered ways, think again. If you want to compare your child, who is still living, is able to walk, talk, say “I love you, Momma and Papa”, with my child who is BURIED on the EDGE OF TOWN in a CEMETERY that is a FORTY FIVE MINUTE DRIVE just to see her, knowing I’ll NEVER see her walk, listen to her beautiful voice say “I love you” “Momma” or “Papa”, be prepared. I don’t care how hard of a situation you have with your child. You at least get to HOLD your child, not just a photo album, a shirt or dress, a blanket, a stuffed animal, any other momentos. You don’t have to remember watching your child struggle for each breath, especially during their last moments. If you think you can compare children being taken out of your life to live with someone else with my situation, you are wrong. And don’t think I won’t bury you in that crap. I don’t get to see either of my angels until I’m dead and able to meet them, hopefully in Heaven. Situations don’t even match up. Best bet? Walk away. If you feel you need to say something, watch your words. I’m done catering to other’s feelings.

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