20perfectdays

Life after NICU and losing my baby girl

Triggered…needing blog therapy…

on 02/15/2013

So, its been a long while since I’ve been on here and UGH! Its been a week that I just need to get off my chest. I’m pretty sure I’m going to be told off for it, but anyone who doesn’t agree with me, I really don’t care. I don’t write my blog for you and you didn’t have to see me every day this week, trying with all I have to keep it together. Really won’t hurt me if you unfollow me.

So, I guess I’ll start at one trigger that is just making me scratch my head. My good for nothing scum bag “father” has been trying to get back into my life and start fresh. If you know this man, you know why I slammed that door. If you don’t, oh, the things I could tell you. In fact, I think I will. This is a man who ignored me the whole time I lived in his home unless he needed something (a baby sitter, money, chores, you name it) but never followed through with any of his promises. Great guy, huh? My first holiday after moving up to MN, he was way up north near the Canadian border at a concert with a chick he met online. I had to find my own way to keep myself entertained for Thanksgiving. When he got home, he felt it was appropriate to show me an email this chick had sent to him by accident and OH LORD, its NOT something you show your daughter. EVER. EVER! Funny enough, Christmas was the same. I was by my self at the house while he was off with this chick and her family. And he didn’t even think twice about inviting me along. New years? I spent working at the restuarant across the street. Nothing better to do. Every holiday was like that. I always came second to the chick he was with. Great huh?

So he tries coming back into our lives right around christmas time. He also had 2 sisters seeking me out. One of the sisters told me about a half sister I had who was older than me and apparently he didn’t know about until just in the past few years. Sorted out the situation and found that the half sister was a fraud thing and he blocked us out of his life again. Big loss, there. Anthony has no clue who you are and you won’t ever know any of my kids again. Now, I’ve since had a conversation that was super hard to hear, but I did need to hear it. I was FINALLY able to ask someone why no one on my side of the family ever came to anything we invited them to, to see Bailey in the hospital, and why no one came to the wake and so few to the funeral. This *STELLAR* “father” had told everyone in the family “Don’t bother. She has Adam’s family, she doesn’t need anyone else.” Still confused on why anyone would listen to that lying snake in the grass, but at least I know why it happened and I’ve cleared that up. I was also told he was wanting back into our lives because he’s in serious trouble and is looking for social security numbers. HA! Good luck there, Einstein. Door slammed forever. There is more, but I’m dealing with that in private since that seems to be the only way to beat something into their head. Don’t worry, I haven’t forgotten about you.

Another trigger is how often my husband has had to be gone all day. I don’t care how much vacation time you are given, you need to use it during the year, rather than making the last 2-3 months before it expires hell for us. There have been days I needed to get out but couldn’t. Days I really needed my husband home, but he had to work late. Appointments that had to be moved because of the schedule. Really don’t care who is pissed off about that, I feel I haven’t seen my husband nearly as much as I should and feel that its inconsiderate. I had to schedule my final appointments and then wait for Adam to check that they don’t interfere with vacations. Makes my blood boil just thinking about it more. I want my husband home when he should be home.

And this week. *Deep sigh* ugh this week has been filled with tears, pain, and total disbelief. I know this will piss people off, but I really don’t care at this point. The 12th, I was triggered by a birth in the family. I really didn’t think it would hit me so hard. But as I sit in Anthony’s room, watching him fall asleep and rubbing my belly, I couldn’t help thinking about Bailey. Her fast and furious labor, her being put in my arms then taken away, the dr asking the nurses if I could have another few minutes before she left the room, and then her being taken from my arms again to be rushed down the hall. I remember the look on Adam’s face that was full of questions, and one I could read CLEARLY, I had to answer with “Adam, FOLLOW HER. Do NOT leave her side. Tell her I love her.” and I urged him to the door. I had nurses to take care of me, I didn’t want my newborn being rushed down the hallway with voices she hadn’t heard before, scared because everything going on. I remember asking the nurses their policy on where babies slept the first night and being told that she wouldn’t be out of the NICU tonight without a miracle. I remember being helped to the wheelchair and being wheeled to see my daughter. By the time I got there, Adam was fighting to keep a nuk in her mouth and a nurse working quickly, trying to adjust this and that, giving more this, moving that. And my beautiful little girl. Bright red hair and a face VERY much like her brother, only more dainty. I couldn’t believe how amazing she was. I didn’t even notice until later all the machines around her, the nurses around her, the drs talking about her. I was overwhelmed by the chaos going on. And I saw a papa. Staring down at his lil lady and all the pride in his face. My heart couldn’t hold more love for my family than that moment.

I remember not getting to stay long because they were afraid I wouldn’t be able to stand long and they wanted to get me set up with a pump and talk to the lactation consultants. I remember my in laws bringing Anthony in with that crazy orange fuzzy ball and them wanting to know what was going on, what we had had (we didn’t find out boy or girl until she came out and kept it secret until we had no choice), and how things were going. I told them what I knew I could, but waited for Adam to come back with the latest. He finally did after awhile and updated us that things were getting scary and that he had basically been told he needed to leave for a bit. I remember telling Adam I wanted to see my daughter BEFORE they put the chest tube in to drain the air from her chest. I wanted to be there to take on HER fear and let her know I didn’t abandon her. I didn’t get to stay long because they wanted to keep it sterile in the NICU and didn’t want to take the chance we would freak out. The next time I saw my daughter, she had even more machines around her, a tube that went into her chest, and they hadn’t untied her arms and legs (they did that to ensure she didn’t jerk away when they put in the chest tube) and my heart broke. This wasn’t supposed to happen like this. I was supposed to have a healthy, happy baby in my arms that was only hooked up to a pulse ox. She was only supposed to be monitored for her oxygen levels. It was her heart that had the flaw, why did they keep mentioning her lungs?

Then I remember the onslaught on visitors. I was constantly being pulled from the NICU for visitors. I just wanted to be by my daughter’s side, but I couldn’t. From there, the memories become more and more fuzzy. Her bedside becoming more chaotic, talk of transferring, and letting the nurses and drs know its not her heart that isn’t working, its her lungs. I do remember though, when the word “transfer” was said, I turned to the nurse that was so amazing and helping me with everything, being by my side almost the whole time, I told her “I’m following her. Just try and stop me.” and she went to look for a dr. I thought I was going to have a battle to follow her. Over my dead body was I going to be away from her side. I had already lost enough time. Once the nurse came back and told me there was a dr that was getting my release papers together, I rushed to my room and started packing. I was going to be ready long before anyone took my baby girl. The nurse stopped me and told me “We’ll pack your room, lets order you a lunch and then you get back to the NICU. They need you there and we can take care of this.” This nurse was AMAZING.

More blurring memories. Being handed Bailey’s nuk, being given papers to read and sign, all didn’t even have her name on them. When the nurses from Amplatz showed up, I remember thinking “Someone needs to go with, she doesn’t know these people!” and being frustrated that we couldn’t even send Adam to be by her. We were handed maps, given directions, and they packed up my baby girl. They couldn’t even take the machine that was hooked up to her chest tube because it wouldn’t fit, they would just have to hurry and hope.

Fast forward to when we made it to Amplatz. It was getting late and they didn’t have any news at all. They wanted to get some basic info from us and told us “The dr will come see you, just go wait in the lounge” It was at least 2 hours before we got to see the dr. In the mean time, we had nothing but worry, an anxious and obviously thrown off toddler, and more worry. The dr came in, I remember the look on her face. A mix of optimism and worry. Bailey was finally stabilized, but things had gone bad during transport. Her heart had stopped because they didn’t have the machine to pull the air out of her chest. The nurses had to do over 10 minutes of CPR while in transit just to keep her heart pumping. My heart SHATTERED. The dr told us that they were able to get her heart started again, but there were bruises on my baby girl’s chest from the cpr. She was finally stable, but they had to add 2 more chest tubes. She was finally starting to turn the pink she should have been long ago. They were now worried about the low oxygen levels she had been at since birth and about how long she would be stable. If she kept herself stable, she wouldn’t need ECMO, but if she started slipping, they needed to get her on ECMO right away. The dr left and told us we could visit for a bit. Wasn’t long after that that she started slipping and we had to make the choice of baptising her “just in case” before they started doing ECMO. It would be a long time after they started putting her on the machine before we’d get to see her again. We were told to go lay down and try to get some sleep, they’d come to us when we could see her again. We had to sleep in the family lounge and fight the receptionist who kept telling us “Stop closing the door! You can’t sleep here!” Well, when you just drove hours to get here after just giving birth and have NO WHERE to go, guess what, doll? We are gonna sleep whereever we can find room. They finally gave us a room and we got to see Bailey FINALLY before bed.

The next days were filled with early and long days bedside, learning new faces and hearing other’s stories, being told good news and not so good news, and learning medical terms I never thought I’d ever be able to pronounce or spell, let alone explain to others. I even found myself COMFORTING OTHERS. I was told “You are so strong, I would be in shambles if I were you!”

Well, I wasn’t strong. I was NUMB. I couldn’t bring myself to even try to hug my son as much as he needed and I couldn’t bring myself to leave the hospital for anything. I had to be pulled away to pump, eat, and sleep.

During her final days, I became really depressed. I knew something was really wrong all along, but I just didn’t want to listen to that voice in the back of my head screaming “You won’t get to bring her home, she wasn’t intended to stay…”. I grew angry with anyone talking about how it was fine to be stable, said those words that still cut me deeper than any knife “not compatible with life”, or talked about anything being wrong. This wasn’t supposed to happen to me. I wasn’t supposed to be there. There were babies born before viability that were growing stronger and making strides. My baby was a full term baby! Why is my full term baby the sickest in the NICU? Why were things going so horribly?!? We almost lost her one night because something shifted out of place with her ECMO cannulas and we only got one call (that we ended up missing) telling us something was wrong. I had to call back the hospital to find out what, and Adam and I flew from the Ronald McDonald House to be by her side. The whole time, we were furious. Why hadn’t they tried harder to contact us? What if she had died? What happened? We chewed out everyone around our baby for not calling again, not trying harder, and for being all around ignorant. You don’t just call once, say you need to call us back ASAP or get here NOW, and then no follow up call or anything. Don’t tell me you wouldn’t have let our baby die without telling us. Don’t tell me you tried EVERYTHING. I can’t even imagine if things would have gotten worse and we wouldn’t have been there when she died.

The day before he biopsy came back, Adam and I had to be real about things. Our daughter was starting to go through organ failure and things were looking grim. When the results came in the next day, our world crashed. We became THAT family. The one that comes into a hospital, has a baby, and leaves empty handed, with nothing more than a memory box, heading to the funeral home to make arrangements. The night before we let Bailey go, Adam asked me a question. “So, who holds her as she dies?” And I was throw for a loop. I knew I didn’t have the strength and felt ENORMOUS guilt that I had been the only one to hold her thusfar. Obviously Adam would be the best choice.

I can’t imagine having been away from her for any stretch of time and I know it killed Adam when he had to take Anthony and go back to work, putting his scared little man in daycare, playing a single dad role. My heart broke for Adam when I talked to him at night. Hearing the sadness in his voice. His girls weren’t there with him and there wasn’t much he could do about it. I did my best to make sure I sent photos and videos of Bailey and called him often. My heart was hurting too. My son and my best friend were 3 hours away. I heard the sadness in their voices that we couldn’t be together. Luckily it wasn’t long before they’d be back, but it still hurt having to say goodbye to them when they went back home without us.

So, I’m breaking my silence. I’ve put it out there that I don’t see how ANY parent could not rush to be by their child’s side. Wouldn’t move Heaven, Hell, and everything between, fighting anyone who stood in the way, and make excuses (face it, they are excuses, and piss poor ones) to not be bedside. There are so many stories out there of how a parent being there, whispering to their baby, laying their hand on a hand, foot, or head, and just reassuring their baby, and that makes ALL the difference. I know that when Bailey’s stats would start to get a little low, if I talked to her and put my hand on her, she would pull them back up almost every time. She turned her head what little she could, opened her eyes, and moved her fingers for her papa. She knew when he was there and when I talked about him. Don’t you DARE tell me that you don’t make a difference just in being there. There is no such thing as “There is nothing I can do.” YES! there is. That baby has heard YOUR voice for the past 9 months. That baby knows YOUR smell. That baby knows everything about you. And the longer you are with them outside the womb, the more they know you. You think they don’t notice that all the faces around them are strange? That the voices aren’t what they are used to hearing? That they aren’t terrified and dealing with all this fear and pain (ivs hurt, along with anything else they have to put on or in them) and have to face it alone? You think you are going through anxiety? Welcome to parenthood. Your whole life is now anxiety. And there is never a point it fully goes away. Get used to it. Try facing it totally alone with strangers, no one you recognize, and no one to reassure you.

There is a saying out there that fits SO well into this. “Making the decision to have a child is momentous. It is to decide forever to have your heart go walking around outside your body.” ~Elizabeth Stone
What does it mean? It means having kids isn’t a choice to be taken lightly. You are forever on the backburner and your child comes first. Your child is your heart and soul, mixed with the heart and soul of another, walking around outside your body. You would kill for this child. You would DIE for this child. You would do ANYTHING to keep them safe, healthy, and happy. Even though it woudl royally suck, you’d take on every pain they ever had, just so they never had to feel pain.

I know exactly how I would handle the situation if we were to have to go down the same road we did with Bailey again. I would tell Adam to be by that baby’s side until I can get there too. I would fight anyone who got in my way so that I could be there too. Nothing would stop me. Hospital rules, icy slick roads, NOTHING would stop me.

Now, I’m here as a support (having been there, I know that the support can make all the difference to keep you going or make you want to give up on everything) and prayers are being said all the time for healing, health, and getting to come home very soon. Just because I have a strong opinion about how things happened, that doesn’t mean I don’t give a damn. There are no excuses when it comes to your kids. You give them everything you have, you go without, and you give them better than you got. You say you didn’t come from a loving home? Give that amazing, loving home to your child. You say that you didn’t have much growing up? You give that baby all it needs and give them what you didn’t get. If you don’t give better than you got, don’t expect your child to turn out better than you did.

Now, if you don’t agree with me, TOUGH SHIT. I’m not taking this down and I’m not editing it because people are upset. Hit that unfollow/unsubscribe/unfriend button. I’m not going to keep biting my tongue to save other’s feelings. While I don’t agree fully with how its happening, many are thinking it, they just aren’t saying it. Would you rather people be honest with you or only tell you what you want to hear?

As much as it hurts, I prefer honesty.

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