20perfectdays

Life after NICU and losing my baby girl

I’m done being quiet

Ok, I’m sick of this and I’m going to lay it all out there now. I have dealt with so much in the past 7 months and I don’t think I’ve deserved any of it. If you are reading any of this and are wondering if its about you, it probably is. I’m tired of telling people what’s on my mind and they get upset because its not what they expect from me, its not what they think I should be thinking, or (my personal favorite) it doesn’t agree 100% with their way of thinking. I’ve been told a lot of things lately and I’d like to address it. I’m putting it on this blog because it all has to (in some way shape or form) do with what I’ve been through in the past 7 months.

So, I’ve been told by several people that I’ve changed. HOLY HELL!! NO WAY!!! Take a minute to put yourself in my shoes and imagine how your life would be. You go through a challenging pregnancy, are told your child has a defect (serious, but fixable), and you hold onto a little bit of hope that they are right. You start actually expecting that not everything is going to go to hell in a handbasket. Baby is born and rather than getting to hold on to them, stare in their eyes, and attempt to nurse them, they are taken from your arms after not even 5 minutes of holding and rushed off to the NICU with your husband 5 steps behind shouting that he loves you and will be back when things calm down. Imagine seeing your child hooked up to so many machines, so many medicines, a ventilator, IV lines, and being TIED DOWN so that they can put in a chest tube to drain off the air that is slowly choking your precious newborn’s heart. You can’t begin to know how badly my heart was aching seeing my baby girl fighting to get her stats up and keep them there. I was barely able to put a full hand on my daughter because there were so many machines, lines, and other people around her, trying to figure out why her oxygen won’t stay over 60%. You can’t imagine how badly I was hurting from having just given birth and being told to go back and relax, pump, eat, and then I could come back in the NICU, but all I wanted to do was sit on that stool by my very sick daughter and never move again until she was ok. You can’t imagine how scared I was when they started making arrangements to move her down to the cities. I ran from the NICU (ask anyone, I RAN as fast as I could), rushed past some of Adam’s relatives shouting that I couldn’t talk, I had to pack and find a way to get myself out so I could go with. I started throwing what I could grab into a bag, telling the nurse that I needed to get out NOW because there was no way in hell I was staying a moment longer than my daughter. The nurse instantly showed she was on my side by grabbing my hands, telling me that she was going to gather some nurses, they were going to pack my bags and order me a meal to go, and that I needed to get something I could leave in out and then get back in the NICU, Bailey needed me.

You can’t imagine how hard it was for me to see other parents coming in and getting to hold their precious babies and here I was, 10 feet away, watching 5 drs and several nurses working hard and trying to figure out what was going on. My heart sank when the nurses and ambulance drivers came in and started packing up my daughter, telling me that they couldn’t fit anyone in with her, we would have to drive ourselves. Ask my in laws. Ask them about that day. Ask them how hard I worked to get myself down the stairs and into the car, less than 12 hours after giving birth and NO pain meds to speak of. Ask them how scared we were. Ask them about when we sat in that waiting room in the U of M Amplatz, waiting for a dr to come in and tell us what was going on. we waited the longest time before a dr came in and gave us the devestaing news that Bailey had technically died on the way down. Her heart had stopped because they didn’t have the machines that kept pumping the air out of her chest. My daughter had DIED and I wasn’t there next to her. By the grace of God and her fighting spirit, they got it going again. We then had to sleep in the waiting room, waiting for more news. 1 am they came in and told us that we needed to get in her room NOW because she was starting to slip and they needed to put her on ECMO immediately. We had them baptize her in the fears that she might not make it through.
You can’t imagine how my heart sank when we had to practically cage my 20 month old son in a room the size of our living room for about 12 hours a day, keep him off the computers, away from the door, away from the fridge, away from the other people, etc. Taking him down to the other levels so he could run around and burn off some energy. You can’t imagine how badly I wanted to just hold him and cry but I couldn’t. I ended up doing to him what no parent can imagine doing, but it was the only way I could protect us both. I started to shut him out. I was afraid of losing him too. I had to do it because I had no idea what I was supposed to do. I wanted to spend every waking minute next to my struggling daughter and I wanted to curl up with my son and just never let go of him, but all I could really do was shut down.

There are only a handful of people who understand the hell I had to go through. Those drs and nurses tried everything they could think of and tried like hell to keep my little girl here. After the first week in the hospital, I stopped crying when we went into her room in the morning. I couldn’t find the tears and I had become accustomed to the lines and wires and tubes and medicines and blood draws. My life became all about drs rounds, medical jargon, eating, pumping, sleeping a bit here and there, and not going to bed until late because I wanted to stay a lil longer, just in case.

There are only a handful of people who understand how it feels to give your all, pray daily, beg for miracles, watch the ECMO clamp outs and pray for good answers, reading drs faces trying to get a read on what really happened, watch countless different procedures being done on your newborn like they are a specimen in a petri dish, and the surgeries. The surgeries and being locked out of her room while she or one of the other babies was being operated on were the worst. You can’t imagine how your heart hurts knowing that the next peice of paper they bring you, they are asking permission to cut your child open and do SOMETHING to them, praying that this is the last time you have to sign your name. Signing that biopsy form, I felt a tinge of hope, but a big dose of fear. There was hope that this was still something that could be treated, but there was a huge fear that she really was “incompatable with life”. Waiting through the weekend and praying for any other diagnosis, hearing in the rounds that her heart is starting to fail, her kidneys are starting to shut down, her fluid output was slowing, she’s horribly swollen and they can’t do anything about it, her eye lid was so swollen, it looked like a waterballoon, filled to its limit. Her whole body was like a balloon about to burst. One thing that bothered me above all that was that her head was misshapened. She was always sedated and they couldn’t and didn’t dare move her head because the cannulas were very touchy, so her head was flattenig out.

Adam and I had talked that Sunday (July 31, 2011) and I had asked him if he thought it was time we just stop being selfish and let her go. I was tired of begging for a miracle and refusing to give up, but you could tell she was getting tired of fighting for every breath. For every heart beat. For every minute possible. We had decided that whatever was to come, we wouldn’t hold onto her a second longer than necessary because if we did, we were being selfish. Being selfish is NOT how a parent does things. Monday rolled around and they were talking more about her heart failing (it was already weak from the defect and this was just making it work itself to death) and her kidneys were barely working anymore. Adam and I knew we were at the end. I didn’t need a diagnosis. I already knew she was dying and that short of the biggest miracle out there, she wasn’t going to make it. A Father came by and gave her her last rites and blessed her. EVERY NURSE IN THAT ROOM was crying with us. None of the other parents could look us in the eyes anymore. We had become those parents we had just seen a few days earlier, preparing to say goodbye to a life that was not meant to stay here. They gave us our own room so that we wouldn’t have to face them (I think it had something to do with me flipping on someone’s kid for putting some garbage music on the computer while we were trying to get paperwork in order and the mom asked us to be moved). Adam and I made sure to eat before the nurse practitioner came in to get us and tell us that results were in.

We knew. Walking down that hallway to the conference room, we knew. The diagnosis was basically confirmed. As I sat down and watched the dr come in with the social worker (and all of Bailey’s core nurses) and he had a piece of paper. He put it on the table but quickly made sure it was facing down. I felt like I was in the worst dream ever. The tears started as the dr cleared his throat and struggled to find the words to tell us. I could tell it hurt him to have to deliver this news. I knew that at least half the room knew too. As soon as he said that ACD was confirmed, I couldn’t hold it in anymore. I broke. The dam burst and there was no chance in hell of me stopping the flood of emotions. My baby wasn’t meant to stay here, she was dying. And she was dying fast. She had shown how much she loved us by fighting this long, but she was tired and it was time for her to go. I remember the social worker commenting about how I was “so stoic during her clamp out, showing so little emotion” and asking how I was feeling. I remember wanting to punch her until I didn’t hurt anymore. How was I feeling? I had been going through all these emotions, crying myself to sleep EVERY.SINGLE.NIGHT. I had never imagined that I would be one of those parents who could walk into a hospital pregnant and excited and walk out broke hearted and empty arms. I was ANGRY! HOW DARE THEY question how I was feeling. My daughter was DYING. She had no more treatments, no cures, no hope left. How was I feeling? I felt BETRAYED. My body hadn’t cared for her enough so that she could survive on her own outside my womb. My body had allowed defects to form, and my body had allowed another child to die on me. I had given up so much to have a healthy baby and here I was, about to say goodbye to a life I barely got to know! She would never see the sun, never experience the beauty of Minnesota weather, never open presents on christmas, never have a birthday and smear cake everywhere. She was never going to fight with her brother and come running to me after he pushed her or took her doll. It was all taken from all of us.

As we went out to get things to help pamper Bailey for her final night and her ultimate goodbye, I could barely think about what I would have to do in the next 24 hours. I had to turn that part of me off and just cherish each and every moment I was given. Picking out hair things, outfits, thinking about how to get this or that on her without interrupting any of her medical stuff, thinking about how she was going to love finally getting a bath and getting a spa day. I wasn’t sure how I should feel. We quick rushed to get our things in order so that we could spend one last night with her. Jane promised that we would do so many things, make so many memories, and enjoy every moment with very little interruption. Jane was going to be there for us and be by Bailey’s side one last time. She helped me bathe my lil girl, pamper her, put a headband on her head for a few photos, told us to read to her (she loved hearing her papa read to her, she always responded to his voice), and got handprints and footprints. She said they would keep making the “arts and crafts” through the night and I would get to see it all in the morning.

Now can you imagine how morbidly calm we were that next morning. Knowing we were about to withdraw support and let our angel go, we got ready and thought deeply of everything we were facing. I guess it was calm because we had our answers and we knew that there was nothing else left to do but say goodbye.

You say I’ve changed? Yea, you’re damn right I’ve changed. I’ve given birth to a child that I never got to bring home and never got to dress up until after she had passed. I’ve had to leave my child in a hospital day after day after day and pray that she made it through the night. I had to walk away from that hospital one last time with empty arms and a broken heart. I had to sit in the car and wonder what kind of FUNERAL to plan. We didn’t even get to go home, for the love of God. We went from the hospital to the funeral home. In the wake of such heartbreak, we had to make plans for her services. We had to pick out so many things and go so many places to get things in order for her burial. I had to wake up every day, deal with the physical signs that I had given birth (that doesn’t stop a few days after you have a baby, that takes several WEEKS), deal with my body still producing milk (and way too much of it), and bring my only surviving child to a FUNERAL HOME to say goodbye to his sister. My poor baby boy was sick (so much stress for such a little boy) and ended up passing out in a pew while we kept greeting people and introducing them to our little angel. I had to watch them wheel her out of the church and into a HEARSE and follow them to a CEMETERY for her to be BURIED. Still not getting it? While you get to hold your precious children in your arms and see them just about whenever you want, if I want to see my daughter, I have to get into a car (usually with Anthony in tow and that’s not always easy), drive 45 minutes to a cemetery on the edge of another town, and hug a cold piece of polished granite. Spill my heart out to a teddybear holding onto a heart, bearing her name and photo. I see her footprints in the base, read the inscription, make sure her flowers and other “decorations” are still intact and looking good, then pick myself off the ground, kiss the top of the bear, adjust its headband, and make the slow, heartwrenching walk back to the car and leave. leave her broken, defective body there. Leave the broken body I gave birth to. I want to remember her and her smell, I have to dig out her memory box (while Anthony isn’t awake usually) and go through it, so careful not to mess any of it up or cry on any of it. I smell the cloth that she was wrapped in. Smells like hospital, rubbing alcohol, and adhesive. Hold the pieces of fabric that were used on her. Study the blood on the one cloth. Run my fingers along the grooves of her hand and footprints. Study each detail, then pack it back up in the box and put it away.

You tell me I’ve changed? Yea, I have. I’ve been through hell and come back. I’ve gone from a family of 4 to a family of 3. I get things in the mail from insurance and the hospital that have her name on them. I’ve had companies that cruise through the birth announcements and send out coupons. I’ve had a company dig through the obits and send me a coupon for a headstone. I’ve had people from Social Security call and tell me that my claim for SSI was denied because she didn’t live long enough to be considered (the minimum is one month) and that HIS social security number will automatically be put back in the database, that HIS death certificate should be in the mail soon, and what a tragedy it is that HE didn’t live. I hung up on him before I could say anything I’d regret.

I’ve changed? Yea, I have. And the people who really do love me? They accept my changes. They don’t tell me that I’ve changed for the worse. They tell me that I’ve shown how strong I am and that there is no way I’m at fault. They don’t tell me that I’m always looking for attention and begging for sympathy. They tell me they love me and they are there if I need to talk. The people who don’t even try? They don’t love me. They don’t care about anything outside their precious bubble. The events of my life make them question everything and they can’t deal with that.

I may have changed, but you’ve stayed the same, that’s for sure. You might want to work on that before you shove anyone else that you “care about” out.

Edited:Ok, I got one comment and I’m going to respond here. You think I’ve been mean? I’ve been called every name in the book, been told I’m ignorant, stupid, uneducated, a bad person, and many other things because I didn’t agree with someone’s way of thinking. I even revealed personal information that I haven’t told ANYONE publicly and was disrespected. If you don’t want to hear my personal opinion about something, don’t go posting it and expect that I’m going to ignore it when its a hot button thing with me. I’m done being that quiet girl that sits in the corner and lets her friends treat her like she’s too stupid to have an opinion.

One of the posts you are talking about we kept our language clean and didn’t use below the belt shots. But we weren’t given the same courtesy. You didn’t even see the message sent to me privately, did you? Life is too short for me to keep everything bottled up for the sake of keeping the peace. I’m sick and tired of people pushing me around or thinking they can say whatever they want to me and there aren’t consequences to saying VERY hurtful things.

Base line, either you have respect for me and my opinions (I never said you have to agree, just give me respect and I’ll give it back), or you don’t give a damn and think that I’m not going to get upset when my feelings are stomped on. Funny how others have told me that I upset them but we managed to work through it.

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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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Therapy Homework, Day 1

So, We did the therapy thing today. My homework was to write about the pregnancy, from the moment I found out I was pregnant until birth. This should be an interesting trip down memory lane. Here we go.

So, Adam and I were waiting until the current cycle ended before we were going to start trying for another baby. Pretty much, we were expecting that the cycle would end right around Anthony’s first birthday, give or take a few weeks. I was still regulating, so it was hard to predict, but it was getting onto a more “normal” schedule. So when I still hadn’t had my period, I decided that I would take a test and see if something was going on. I wasn’t quite sure why, but I had a feeling that something wasn’t quite right. I mean, it took 14 cycles and 11 months from the miscarriage to the day we found out we were pregnant with Anthony, surely it wouldn’t, couldn’t, be happening without us trying!

We had a friend over (the kids’ godfather) and he and Adam were playing games on the Wii or playstation or whatever. I was on the computer playing my games when I had to go pee. I gave Adam the “I’m gonna go do it now” look and went about my business.
So, I take the test and sit back wondering what the result could be and preparing myself for it to be a BFN (big fat negative) and preparing for the emotions that would surely come as a result. No way could it be a BFP (big fat positive). About 30 second after I set the test down (because during times like that, I just can’t seem to control myself and I become as impatient as my mil (mother in law). Imagine how hard my jaw hit the floor when I see a BFP. A freaking DARK line on the test. Holy crap. Pregnant, again. Two under two. A newborn with a young toddler. And I was still nursing Anthony, so the whole theory of that being perfect birth control is CRAP. I was pregnant. I started freaking out (quietly so no one outside that door had a clue) and laughing. No way! Things like this just don’t happen! No trying this time? No planning, testing for ovulation, temping, charting, paying attention to every twinge and trying like crazy. This was really happening again. I swear that I also started feeling movement. Not having kept track of cycles at all, I had NO clue how far along I could be. Couldn’t remember my last period, but I knew that we had only had “tried without trying” 3 times since Anthony was born. This was crazy! I had to let Adam in on the news, he had to be wondering why I was STILL in the bathroom. I can only imagine what he was thinking that whole time. Was I melted in a puddle because of a BFN? Was I passed out because of the results? I was actually surprised that he didn’t come and see what was going on.
I call him in and show him the test. Of course, he brought Anthony with. It was such a happy family moment. Our little family was growing and now, here we were expecting another and our first hadn’t even turned 1 yet! He still had a week left of being a baby before turning into a toddler! Adam’s jaw dropped and he asked me if this was really a test I had just taken or if it was an old one from when we were pregnant with Anthony because the line was so dark. No, that test was just taken. You are gonna be a Daddy again!
We knew that we needed to get more tests to make sure it wasn’t a fluke, so we made an excuse that we needed to go to Target and brought Morgan with us. Imagine his face when we walk down the aisle with the pregnancy tests and buy a few. Being the kind of guy he is, he asked us “Are you guys trying again? That’s great!” Adam and I shared a look and then told him that we had just found out we were already pregnant again. His jaw dropped and he said his congrats to us. We were so excited. We had to start telling some people and I had to wait until the next day before setting up an appointment for me. Well, since Anthony was in need of his 1 year appointment, we decided to make it a double trip. When we got home from Target though, I left the boys to do their thing with the video games again while I started cooking dinner and called my mom. I told her that I wasn’t feeling well and she asked if I was catching something again. I couldn’t stop giggling and she caught on RIGHT away. She said “Are you pregnant again?” and when I told her yes, she started laughing and I could tell she was getting super excited. I told her that if my math was right, we would be due the day after our 4th anniversary, but I thought I was about 6-8 weeks along. It only made sense because I know that I was feeling SOMETHING moving and bumping around!

Fast forward to November 28th. Anthony’s first birthday party (we had a bigger get together that day because it would be easier to get everyone together then, rather than 2 days before Thanksgiving. We got EVERYONE we possibly could together for this party. This was going to be when we told EVERYONE. We had such a great way of telling everyone too. We had gotten a book about being a big brother and wrapped it up for Anthony to open. Imagine how hard it was for me to keep my mouth shut as everyone came in and kept asking how things were going and if there was anything new in our lives. Of course there was, we were pregnant again! But I didn’t dare tell anyone. We managed to get through everyone coming and seeing Anthony (he was totally overwhelmed with so many people around). We got through the meal (Well, everyone else ate while I fed Anthony and while Adam was opening the other gifts, I finally got to eat) and the present opening began. My heart was beating like a drum in my chest. It was like I was in The TellTale Heart with how hard it was pounding. Surely someone could hear it! But as we get down to the end of the gifts, I hop up and grab the camera, step behind Adam and tell him to go ahead and open it. Everyone was SO confused why I would be taking a picture of everyone else while we were opening gifts for Anthony. Adam opens the present and shows it to everyone, reading the title for anyone who couldn’t read or couldn’t see. I got pictures of everyone’s reactions just as they read it and just as they understood what was going on. While everyone else was figuring it out, Adam’s cousin Holly was putting it together and said “OMG! Megan’s pregnant again!”. I think half the room STILL hadn’t put it together at that point. As it sunk in for each person, they started crying, shouting their congrats, asking how far along, how I was feeling, everything you could imagine. We had to get to the whole cake thing after that so we didn’t get to sit and enjoy the news for too long before needing to move on and get going with the next thing so people could get back home before it got too late. While Anthony was eating his smash cake, I was talking with other people (and of course watching Anthony slowly destruct the little cake we had gotten him) and telling how we were excited, didn’t know how far along, I was starting to feel some nausea and I was feeling movement. Holly thought I could be nearly out of my first trimester already. I didn’t think I was that far along, but I was hoping that I would be through a majority of the morning sickness I was sure to experience. Everyone was so excited. I still can’t get Deb’s face. Her jaw dropped and she teared up right away.

Fast forward again, December 2nd. My first appointment. I had to have a blood draw to get on WIC as a pregnant woman and for insurance purposes. Plus we had to get an ultrasound to pinpoint just how far along we were. Imagine our surprise when the dr dated us at 6w6d. We had literally found out we were pregnant right after the point where a test is able to pick up the hormones. HOLY CRAP. It made it all the more real. Our dr was even really happy, but surprised we were back so soon. We told her that we decided we wanted the kids a little closer in age so we started preparing again around his first birthday. It just worked faster than we imagined. She gave us the official due date of July 22nd, as I had suspected. The day after our anniversary. This could make things really interesting.

So I kept on working at the store (it was winter time so I was wearing a sweatshirt or layers and no one was the wiser as to what was going on unless I said something. I worked through the morning sickness (which lasted much longer this time…14 weeks!), the movements (Again, felt them starting super early!), and quickly growing belly. They aren’t kidding when they say that you start showing sooner after the first one. I was starting to show a firmer belly around week 8 or 10. I had a hard time getting myself together for a belly picture or tracing (like we did for Anthony) and a hard time doing the weekly updates like I did with Anthony. Hell, I kept forgetting to write in the friggin journal we had gotten for Bailey. I know I suck at those things, but it was even worse this time around.

At our 16 week appointment, they asked us if we wanted to do a quad screen test to screen for Spina Bifida, neural tube defects, and Down Syndrome. We couldn’t remember if we had with Anthony, but figured what could it hurt? We were young, healthy, and had had a healthy baby before. No worries, right? WRONG. DEAD WRONG. We came back with an elevated risk of Down’s. A normal couple with a normal pregnancy has like a 1 in 100,000 chance of having a baby with Down’s. We had a 1 in 270 chance. HUGE difference. Well, we had to wait until at least week 20 to go in for a level 2 ultrasound and a talk with a genetic counselor. I was freaked out. I did so much research on the screening and tried to take comfort that its like casting a net into the ocean. Your net is going to cover a lot of water, but when it comes to pulling it in and seeing what’s there, there is a good chance that your net will come back empty. But there’s always that chance that you get something and without the screening, you won’t catch any of it. I tried to tell myself that I couldn’t get worked up until I had proof that something was wrong. Until then, go about life and just don’t say anything to anyone until we know what’s going on.

Week 20 comes. March 9th to be exact. The big day for the level 2 ultrasound (able to see more details, useful when there is a chance of defects) and the genetic counselling. I remember being so scared and praying over and over that we were a false alarm like so many before us. First, we talked to the genetic counsellor. She said we had a very high number where it should have been very low, and that number meant that our chances of Down’s was elevated quite a bit. She couldn’t see any reasons why we would have this pop up and was fairly confident that if something was wrong, it was a fluke thing, not genetic.
We get to go in for the ultrasound. I was so scared and nervous. The genetic lady had put my mind to ease some, but nothing was going to kill that feeling of uneasy until I was told that baby looked 100% fine. After an hour of measurements (all on track or ahead of where they should be), the tech leaves the room to find a dr. My heart sank. She had been looking at baby’s heart and soon after that had gone out of the room. I wondered what could be wrong. With Down’s, there are certain bones that measure way behind or not straight and there’s a fold on the back on baby’s neck that is thicker in effected kids. All of these things looked normal. Sure there was a little more fluid around the lungs than they like to see, but if we hadn’t come back elevated for Down’s, they wouldn’t have thought twice about it. Dr comes in, does his thing with the ultrasound wands, then tells us that baby has a hole in its heart that will require surgery before a year old. I remember falling to pieces and trying so hard not to shake as I cried so that he could keep looking, in hopes that he was wrong. I couldn’t believe it. My baby has a defect. Not just any defect, one that requires surgery, will not heal itself, and is often associated with Down’s. I was in no way upset about the Down’s chances as I was baby’s heart. Down’s children are amazing. They have huge hearts and love with all they have. Its the defects that come with it that scared me. There could be lung issues, bowel obstructions, heart problems, kidney and liver issues, you name it. My baby’s heart hadn’t developed right. What had I done to cause or deserve this? What issues would we have in the future? The dr tried his best to assure me that it wasn’t something I had done, it was just that something hadn’t fully formed. He explained that endocardial cushion defect (also known as an atrial ventricular septum defect and either a complete or transitional av canal defect) means that there is a hole in the septum between the atriums and the ventricles. Its not something that will fix itself and its something that requires open heart surgery. I was crushed. We knew we weren’t going to go any further with any Down’s testing. If we came up positive with that, we would accept and love baby no matter what. We wanted to find out how serious this heart defect was and what we could do about it. We got hooked up with a perinatal pediatric cardiologist who is AMAZING at what he does. We got all set up for an endocardiogram (heart ultrasound) to see the extent of the defect and give the cardiologist (Dr Chip) a chance to make a plan. We went home and prayed for a miracle, accepting that this pregnancy was going to be a really hard one and no matter what, we needed to stick by each other and make sure that we knew where the other was mentally. We also had to accept we would be going to the dr every other week. One visit would be the regular routine visits with our regular OB and the visit 2 weeks later was going to be another monitoring visit with the perinatologist to see how the heart defect was progressing or not.
Week 24 comes (April 4th) and we drop Anthony off at Adam’s aunt MaryAnne’s house because we know its going to be a super long day. We get the endocariogram done and find out we aren’t going to get to talk to Dr Chip just yet because he was adopting a baby that day and was obviously unable to make our appointment. We understood he had this going on, but were upset that we didn’t get notified beforehand so that we could reschedule. I needed Adam to be there when the dr said these things. Adam is more able to retain these bits of information, but we didn’t get our way. We were told the dr would call another day and we could get all our info then. Knowing our luck, it would happen while Adam was at work and I was home alone with Anthony. But anyway, we ended up going through a super long, super boring appointment at the hospital with the heart team doing their thing with the endocardiogram, then barely had enough time to make it to our appointment across the highway from the perinatologist’s office. We made it in time and went through another super long, super boring waiting period waiting for the nurse to come in, the ultrasound tech to get to us, the dr to come in and talk to us, everything. It ended up being about 2 hours longer than it should have been and we hadn’t eaten at all that whole day. Finally we get to talk to the dr and he explains what is going on more with everything. He explains that while its a little more rare of a defect, its not completely unheard of, its a complete av canal defect (hole in between the top 2 chambers and another hole between the bottom 2 chambers), open heart surgery will be needed between 3 and 9 months old, possibly closer to 3 months, and it was advised that we deliver in St Cloud compared to Little Falls as the baby’s oxygen stats would be in the 80s and that would probably freak out the delivery team and they would transport. We considered it, but felt it was something we needed to think about more before we pushed one way or another just yet. In the mean time, the holes appeared that they weren’t getting bigger which was a concern as baby grew. We were also told that we would be getting a call in the coming days from the cardiologist. Sure enough, the guy calls when Adam is at work and I’m half out of it from a nap with Anthony. I wasn’t able to catch all the details, but he put me at ease that he has seen this before and while he wasn’t going to be doing the surgery, he had teams down in the cities that would be able to handle which ever way this ended up going.

Now imagine the appointments at 22 and 26 weeks with the regular OB. Having to tell her that we were going to have a sick baby, it was discussed that we might need to deliver in St Cloud, rather than Little Falls. She said she was putting in the prayers, but in the mean time, she would continue to do the routine stuff and leave the more detailed stuff to the perinatologist. Thank God because it was such a hassle to find a baby sitter every other week on a day of the week that Adam and I used to spend together as a family goofing around and enjoying the time off. We just wanted to have our days back, but until things calmed down, that wasn’t going to happen.

Week 28 comes and we head back down to the perinatologist. This time we know we get to talk to the cardiologist. He’s taking a day that he had off to talk to high school students and has decided that he wants to meet us face to face and talk more details as we are getting closer to the big day. We were so blessed that nothing came up and we got to talk to him after the perinatologist. He was so amazing to talk to. He even drew a diagram of what the surgery would entail and made it sound like a piece of cake (still a serious thing, but like it was a little more routine compared to it being something that is hardly ever done) and came with a little bit of other news. He mentioned that it looked like the hole between the ventricles *COULD* be growing shut. If it is, then that pushes back the surgery a little bit. If not, then its still plan A with waiting to see, but focusing on between 3 and 9 months. But, they will need to fix the holes and fix a valve that looks like its torn in some fashion. But he also told us that after surgery, baby wouldn’t need a repeat and would be able to go on and live a happy, healthy, normal life. We were encouraged by this! This was great! We had a game plan, we had decided it might be smarter to deliver in St Cloud so that we could also get an endocardiogram done the day after birth to see how things ended up when baby came out and just in case something went wrong. Our OB was on board with this and even told us that it was a good thing that we decided to do this because we were due around her vacation time, it wouldn’t be good to induce us early, and if it were her delivering, she would tell the delivery staff to cool it over baby’s oxygen stats. But she wasn’t going to be there unless we went overdue which we doubted I would. Baby was measuring 1-2 weeks ahead and headed for being a big baby. We were told by the perinatologist that baby would most likely be born smaller as most babies with heart defects are. We were confused by this because our baby was about a pound heavier than it was “supposed to” be.

Go to week 32 and WOW, things got INSANE. We were running late to an appointment in St Cloud and nearly got into an accident with another car that was trying to park but instead of hitting the brake, she hit the gas and went flying through 2 parking lots, 2 hedges, 1 lane of traffic, hit a light pole, and spun around into more traffic, luckily still out of the traffic heading to the highway. This place has a driving lane that goes all the way around it and has a little stretch that leads from the main road to the parking lots. She managed to stop her car before she got to the main road. I was freaking out because I didn’t see the car (had my nose in the baby names book) and it ended up causing some mild contractions. I had been having these contractions for a little while now, so I just tried to cool off and not get excited about it all. Lady turned out to be ok (to the best of my knowledge) and we ended up being late to our appointment, but they were obviously ok with it because we had narrowly missed getting into a head on accident. Had we been 2 seconds sooner, we would have gotten it good.
Everything turned out to be a no change with the baby. We were beginning to be thankful for that. Sure we would have loved to hear “Guess it all healed itself!” but who expects that and actually gets it?

Heading into week 36, it was our last time going through the alternating weeks thing as the OB was going to transfer all our files down to St Cloud so that we could get comfortable with a dr down there and be ready for possibly delivering anytime, especially seeing as my contractions were getting more frequent, I was having issues being able to work and come home without being in a ton of pain, and was always exhausted. After a ton of drama to get the files down, we succeeded and got appointments in order. Then we had drama with that appointment not being with the dr we had asked for and that we had all sorts of things to get in line since we didn’t start out with all our appointments done in St Cloud. We got it all done and moved on with life. We were going through so much stress with this pregnancy, we just couldn’t wait for it to be over so that we could get our lives back!

Week 37 I end up going into false labor that was really convincing. We went to the hospital and everything, but were sent home with an appointment later on that day to see what was going on and start the weekly appointments. The dr ended up not understanding why we wanted to be induced (living far away and having a sick baby, we needed to have some sort of plan and end date figured out so that we could get more things in line just in case things didn’t go well. This dr was also very rough with checking me and his bedside manners SUCKED. He did help us get an induction penciled in though. They have a policy where they don’t induce before 39 weeks because they don’t want to take the chance that baby not be able to make it because they got too excited with the inducing. Ok, we just sucked it up and accepted it. We both knew though, we’d be back in no time at all. Sure enough, at 38w4 days, I went into labor at 10:30 pm while doing the dishes and getting things ready for my mom to come and making sure that I didn’t have a million things to do when we got back from having the baby. We ended up leaving our place at 3:30 am with contractions more than just regular, they were starting to piggy back (coming down from one contraction and instead of coming all the way down, you end up going straight into another contraction). We knew we didn’t have much time. On the way to drop off Anthony, we were unable to get ahold of my MIL and started worrying that something was wrong with her. We got to her house and got situated (turns out the phone by her side of the bed was just dead) and left her house at 4:30am. By this time, the contractions are getting a little closer and piggy backing a little more. We flew down to St Cloud, got all checked in and looked at the clock. 5:30 am. I was able to do one lap in the hallways before the pain was far too intense to keep going without having to stop and worry if my legs would hold me up. They kept feeling like I was going to fall and my knees kept buckling and then turning to rubber, I tried the labor ball and wasn’t able to be on that for very long before I once again felt I wasn’t going to be able to make it. I got into the bed and the contractions were starting to piggy back so much that it was feeling like one long, drawn out contraction. They kept checking me. At check in, I was a 5. an hour later, I was a 7. About an hour after that I was at a 9 and begging for pain meds. This labor was going in a totally hecktic direction and I felt totally powerless. I needed something because I could barely breathe anymore. They call in the guy with the meds and he informs me that the intrathecal I’m asking for is only good for 45 minutes, can’t be repeated, and I’d need to be totally still for him to put it in (this is like an epidural but its a one time shot into the spinal column with no line sticking out and slightly quicker recovery, either way, you have to stay in bed until its worn off). I said I know I just need SOMETHING and I was at a 9, the nurse had just checked. He no sooner starts opening the packages when I yell “OMG I have to push NOW!!” as I was fighting my body’s urge to push. Everyone in the room kept telling me I had to fight that urge and NOT push, the dr was just down the hall and they were telling him to get in like YESTERDAY. He comes in and starts getting dressed for delivery and tells me “I’m here so go ahead and push when you need, I’m ready when you are”. I pushed the first time and couldn’t believe how hard I was having to push and it felt like I wasn’t doing anything. Adam told me “OMG, I think I see hair! Push again with all you have!” Only happy to oblige, dearest. Second push they tell me that a head is out and just to hold on while they get ready for the rest to be delivered. I fought hard and when he finally told me I could push again, I pushed with all I had left in me. I was seeing stars when I heard “Its a Girl!” I barely heard it so I had to ask “Girl? as in pink?” They all said yes and I was in love. They placed her on my chest for a little while while they had me relax a bit. I noticed she looked totally different in terms of color compared to Anthony, but I heard a weak cry. She was blue, but she was looking at me, connecting with me. It felt like 5 minutes but was probably closer to only 2 when they had to take her and clean her up. We had chosen from the beginning to keep gender an unknown until birth and were over the friggin moon to find out we had just had a girl. Little did we know, that was only the beginning. She was rushed off to the NICU and I was released from the hospital less than 11 hours after giving birth to follow her to the Twin cities.

Well, that’s my homework. Talking about the pregnancy and delivery. I have to say, I like reliving it because it makes it even more real and brings back the idea that I once had her in my arms.

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Where to start…

Well, logically, we start at the beginning. I’m a 26 year old stay at home mom who works very few hours at her husband’s store in town and spends her days chasing after the most energetic little man ever to walk (Nay, RUN!) this Earth. I’ve been with my amazing husband for over 9 years now, married for just over 4 of those. We (well, I have, he helped obviously) have been pregnant 3 times. Our first pregnancy (spring 2008) ended in an early miscarriage 3 days after discovering the pregnancy. We then struggled for 11 long months to get pregnant again. Finally, after being blessed by Father Mark, going to see the ob/gyn, and getting a hormonal test done, we discovered we were pregnant again in March 2009, due in November, just after Thanksgiving. We were blessed with an amazing little boy who lights up our lives all the time. He was a fairly easy pregnancy. Morning sickness, crazy cravings, hot flashes, stretch marks, and one false alarm were the highlights for this trip down pregnancy lane. We both thought that we wanted to have our kids close together, so just before Anthony’s first birthday, we discovered we were pregnant again. We were actually waiting for that cycle to end before we were going to try again. I guess once again, God had other plans for us!

After the same start to the pregnancy (not as intense of morning sickness, but felt sick all day long), we participated in the quad screen (a blood screening done around 16 weeks to test for birth defects such as Down Syndrome, Spina Bifida, Neural Tube Defects, etc, not 100% accurate, just gives a better idea of the risks of having any of those defects) and came back elevated for Down Syndrome. We ended up going in to a perinatologist (dr for babies yet to be born) around week 20 for a genetic analysis and level 2 ultrasound (much more detailed, more specialized). It was discovered at this appointment that our little love had a very serious heart defect called Atrial Ventricular Septal Defect or AV Canal Defect. Basically, there was a hole in the heart between the top two chambers (Atrium) and another between the bottom two chambers (Ventricles). From that point until about 36 weeks, we had a drs appointment every 2 weeks (routine visits in Little Falls with a normal OBGYN one week, 2 weeks later, we would be in St Cloud with the perinataologist and perinatal cardiologist (heart dr for babies yet to be born). We never found any signs of Down Syndrome, but the only way to be 100% sure before birth is an amniocentisis (drawing out fluid from around the baby, carries a 1 in 300 risk of causing preterm labor or miscarriage with little chance of the baby coming out and not dying. We were against this testing, just like we were against finding out if we were going to have a boy or girl.

After months of CONSTANT monitoring and drs appointments, we were released from our regular OBGYN to the St Cloud OBGYNs (the hospital we delivered our son in doesn’t have a NICU or the equipment to handle a baby with a known heart defect). Before we got an official drs appointment with the OBGYN we were going to go with, we ended up having a false alarm (didn’t feel very false to me!) on 7-7-11. We were sent home and told that we could schedule an induction for the following Friday (7-15-11) at 39 weeks because they don’t do inductions before then as a general rule. We were scheduling an induction because we live more than an hour away from the hospital and wanted to have a for sure end date because I was having almost constant contractions and had stopped working as a result. Lo and behold, our child decided it was time to put her foot down and choose her birthday. She chose Wednesday, July 13, 2011. That’s when life as we knew it was thrown up into the air and would come down on us like a giant box of rocks and destroying our feeling of “We are nearly home free, we are almost though this ordeal, now things get a little easier. They only got worse. Drastically, horribly, heartbreakingly worse.

Labor started at 10:30pm on Tuesday night while I was trying to do dishes to prepare for my mom, step dad, and little sister to come up after baby was born. I went to lay on the couch and put up my feet, in hopes that it would either slow the contractions or get labor going even more so. It didn’t slow anything. I knew at 11pm that we were done being pregnant this time around, baby wanted to make an appearance! We left the house at 3:30 am, dropped off Anthony to my mother in law’s at 4:30, and got admitted into the hospital at 5:30, measuring about 4-5 cm and good strong contractions really going their job. I wasn’t even able to walk around the hallways, I was in so much pain. Before I knew what was going on, I was in the middle of the longest, most painful contraction possible. I begged for an intrathecal (like a one time epidural, only lasts about 45 mins and can only be given once), so they called in the guy to do it. While he was setting up, I cried out that I had to push. They checked again and sure enough, I was just about ready. But like Papa and Grandma Tammie, there wasn’t any patience and I knew I had to start pushing ASAP. They got the dr in, I pushed 2-3 times, and Bailey Diane was born at 7:52 am. Yea, that’s right. Less than 3 hours after being admitted to the hospital, I had my baby, without pain meds. Sad fact is, she was born blue. Very blue. She was allowed to lay on my chest for a minute or two before being ran down to the NICU. She was having a lot of problems breathing on her own and needed a lot of help to do so. I sent Adam to be with her. No one should be alone when new to the world and having troubles starting out in this world!

I went to visit and saw my beautiful baby girl. Fighting and showing that she wasn’t going to be going down without kicking and screaming. Adam came back to our room a few short hours later (after we decided her name and had a bite to eat), and told me that she wasn’t doing very good at all. She was struggling and the drs and nurses were trying everything they could think of to get her breathing on her own. Things would seem to work for a little while, then slowly decline again. The idea was discussed that she needed to be moved somewhere else because they didn’t have what was needed to keep her going and get her to breathe like she was supposed to. Less than 12 hours after giving birth, I was discharged so that I could go with when she was transported. Her ride arrived from the Twin Cities about 12 hours after her coming into this world. They rushed her down to the University of Minnesota Children’s Amplatz Hospital (U of M Amplatz) and she technically died on her way down. Her heart had stopped, but luckily, they were able to use chest compressions to keep her going until they got her hooked up to the machines she needed to stabilize. They got to the hospital, got her heart going again, hooked her up to the basic machines she needed, and waited for us to arrive before taking any more action.

We came about an hour behind her (they get to speed, we had to go a little slower and deal with getting everyone needed down to the Twin Cities. Soon after we showed up, Dr Bendel (the dr on staff at the time) informed us that she had technically died on her way down, was now stable, but they were looking at putting her on a machine called ECMO (Extracorporeal Membrane Oxygenation) that would completely bypass her heart and lungs so that they could rest and try to heal from the trauma they had endured so far.

This would be a good time to backtrack a bit and explain why her poor lungs and heart had been through so much. From the start, your lungs aren’t inflated at all until you take your first breaths. When Bailey took her first breath, her left lung didn’t fully inflate. When they tried to the lung more, they were forcing air into her lungs. That didn’t work too well, because it would cause the air sacs to burst and just let the air into her chest. While she was in the NICU in St Cloud, they had to constantly suck the air out of her chest (because it wasn’t in her lungs, it was compressing them) and ended up putting in a tube that went directly into her chest and let the air out. While she was in the NICU, there was a machine that was sucking the air out. When she was being transported, there wasn’t that suction to keep sucking it out. That meant that they were pushing air into her lungs to keep her oxygenated, but the air was being forced in and was just filling her chest more and more, compressing on her heart and lungs, keeping her from being able to breathe very well at all. Her heart had stopped because the air had choked it out, essentially. When they got to the U of M, they put in 2 more chest tubes and started suction to keep those going and her color came back very well. They wanted to wait to put her on ECMO until later but she didn’t improve at all (in fact, she was starting to fail again). This would allow her body to heal those air sacs that had burst from the forceful air being shoved into lungs that didn’t want to expand. I have to say, it was one of the most frightening experiences of my life to have them explain to me what the machines did and what they had to do to get these machines hooked into her. The put cannulas (metal tubes used to drain off or introduce things to the body) into her jugular vein and carotid artery, pulling the blood out of her body before her heart, taking it through a machine that would oxygenate it, then putting it back into her body after her lungs. They had an added step that cooled the blood to also cool her off. They did this for 3 days to slow any damage done by her having such low oxygen levels in St Cloud and crashing on the way to the U of M. After 3 days, cooling does nothing to slow any damage anymore. After the 3 days, they warmed her up half a degree every hour until she was back where she should be.

During this first night, we were given a boarding room in the hospital to make sure we were there, just in case she ended up crashing again or something else happened. Plus, there was no chance that we would have been able to find a place to stay at 1 am when we were finally told we could go get some sleep. Sleep, what a suggestion. Didn’t have much chance for that. Too much worry for my newborn daughter, worry for keeping my toddler son entertained, trying to keep myself from falling over (remember, I was discharged less than 12 hours after giving birth. I was sore, tired, bloated, and really feeling a lot of pain. Crappy pain. Painful pain. No pain meds. Not even an ibuprofen! I guess its just a small taste of what the human body can really endure and keep on going. Thankfully, I got into the Ronald McDonald House (RMH) on Saturday and was able to start getting myself into a routine and make sure that I got through this in one piece. The people in the RMH are amazing. Seriously, people. Save those pop tabs, donate money to them, drop off food, clothing, toys, books, anything you can spare. Its much needed and much appreciated. They don’t turn anything away, but don’t give them your garbage. What these people do is amazing and no one should be treating them like they are nothing.

Now, the point of this new blog is for me to explore more of what happened during the tsunami of events that surrounded Bailey’s birth. I’ll be looking into things I was told when I was down there that I didn’t fully understand until much later (literally, last week in some cases), exploring how life has been since my precious little girl, and some letters to that precious little lady that touched my life so deeply that I could never forget, even if I wanted to (which I hope I never forget!). I’m eventually going to turn this into a book or something along those lines for other parents who have to go through the painful journey I’ve now been down.

I’d like to take this chance to thank the amazing group of people I’ve met on Facebook since this has happened. The ACD Parent group has been…incredible to us. So understanding and always there for everyone, during their highest highs and lowest lows. You guys have been awesome to us and I can never thank you enough!

Next time, I’ll try to stick to one part of the topic and not make it so lengthy so that people would actually want to read this, rather than just glazing over this or that to give a huge chunk of information.

Until then, thanks for stopping by, check back often and I’ll so what I can do for anyone looking for information on the topics I cover. Until then, you know the gist. If you want more details of this or that, please check out our caringbridge website at www.caringbridge.org/visit/baileygosiak and you’ll get a great mental picture of the whole thing.

For now, many thanks for reading!

Megan

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