Life after NICU and losing my baby girl

I’m done being quiet

on 02/23/2012

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.


One response to “I’m done being quiet

  1. Jamie says:

    This was just heartbreaking to read. I can not even begin to imagine the hell you experienced. The fact that you can recall every detail, is just proof how heart aching it was and is. I am happy that you are participating in blogging as therapy, it seems like a thing to do to help relieve some of the burden and heart ache you have to carry around daily. Even though I am not able to begin to understand the pain your family is experiencing, I am glad I am able to read this, and get a small piece. While we have only met a small amount of times for short periods, I’m glad I’ve gotten to know you a little more through Facebook and your blog!

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