Sunday, February 1, 2009

What We Went Through and Continue to Go Through

I guess I am posting this because I didn't start this blog while things were really bad in the beginning and I want to be helpful to other parents of preemies or parents that encounter a NICU stay - both are horribly traumatic experiences. I also know that besides my closest family and friends, some of my other relatives do not know how hard our situation was and how much it affected us and continues to affect us on a daily basis. It seems every time I talked to someone I tried to be really positive, and still do, while on the inside I was falling apart.

Having Lily early was truly on of the hardest things Chris and I have had to go through as a couple. We were very unprepared for what happened to us. At the time I went into the hospital I was just 28 weeks. In a lot of ways I have felt "cheated" of the ways things are "supposed to happen".

Nothing was how it was supposed to be. We had not finished the nursery (nor had it even been cleaned out), we had just started a baby class and ended up missing the rest of it, we had no time to mentally prepare for our baby's birth, we did not have bags packed for the hospital, I never got to "nest", we missed really getting to know Lily's personality in my tummy, we didn't get to experience all of her kicks, I never felt her hiccup, my tummy never got so big that I wanted that baby out now, we don't have very many pictures of me pregnant, we didn't have many visitors in the hospital or at home and I had my shower after Lily was born.

And I think the most traumatic thing, for me especially, is that I never saw Lily enter this world, neither of us did. I was told later, after waking up in excruciating pain after a crash c-section (my epidural was stopped and they could not give me pain meds until my blood transfusions were finished), that I had had a baby. I did not believe anyone. I still felt her kicking inside of me. No mother should ever have to feel like that. I did not know it at the time, but I was going to be experiencing a lot of things that no mother should ever have to, while Lily fought to live each day in the NICU.

Before I had a preemie, I thought preemies were "just small babies", like I think a lot of people do. I did not realize, even when I was in the hospital being told that I was having a preemie, what that actually meant. They are not "just small babies"! They are babies that are still supposed to be growing in a perfect environment - mommy's womb. They are ripped from their quiet, dark, warm surroundings, not having learned everything they need to know (most importantly, how to suck, swallow and breath), not having developed everything they need to live, mostly their lungs and brains, they have not put on enough weight, they can not maintain their temperature and they cannot breath on their own. Instead of being placed in her mommy's arms, Lily was put into her plastic box with a vent to help her breath. She had an iv in her arm and a Picc line in her head. She had a feeding tube attached to her umbilical cord - it would later be moved to her nose. She was attached to many machines. And I know that she didn't even have it as bad as a lot of NICU babies do.

Seeing your newborn baby like this, isn't even the worst of it. The worst is not being able to hold her right away, not being able to stimulate her, having all of your first moments supervised by a nurse, not being able to nurse her, not being able to have visitors hold her and the worst - not being able to bring her home, when you leave the hospital. None of this is "supposed to happen".

Here we had had our baby, and we still didn't know if she would make it. I do not wish a NICU stay on even my worst enemy - it is horrible. You literally live moment-to-moment. Each time the phone rings, you wonder if it will be a call from the hospital about your baby. You feel like you aren't doing enough, but all you can do is pump and visit. You feel like you don't visit enough. You feel guilt that you didn't do everything you could while you were pregnant to give your child the best chance. You feel guilty that nurses are taking care of your baby. You feel happy one minute that things are going good and then the next time you visit you get a bad report and you feel like it will never get better. You feel jealousy toward other babies that are getting discharged, you wonder when it will finally be your turn to take your baby home. You feel scared that your baby will never be normal. You wonder if she will remember all of this. You wonder why all the other moms look like they are able to handle it, you realize you look the same way to others, and you are falling apart inside, so they must be to. You wonder if you will ever be the same person after this. You wonder if you will get the nursery done in time. You prepare yourself for the worst news each time you visit the hospital. Your mood is based on the report you get about your baby. You hate the nurses one day and love them the next. You put your baby in someone else's hands and you pray. You pray while you cry yourself to sleep each night, that tomorrow will bring good news. You miss your baby every night. You call the hospital to see how she is doing constantly. You don't feel like you deserve to laugh at a joke because your baby is suffering. You are hopeful that things will get better, because the reality of what could happen (your baby not surviving), is not something you can face. You are in denial. You are sad. You are sometimes angry. You are helpless.

While Lily was in the NICU I met with a therapist at Lily's bedside, this was a tremendous help. I knew that I needed to talk about what had just all happened and work through what was continuing to happen with Lily. I needed someone to tell me that I was normal and my feelings were normal. My therapist said that I had Post Traumatic Stress Disorder. The sounds, smells and sights of the hospital set me off and reminded me of everything that had happened. It was hard to go back each day, but I had to see Lily.

While I was hospitalized and while Lily was in the NICU we received so much support. We will never be able to thank people enough. The day Lily was discharged I did leaps in our living room, I wasn't able to stop smiling, this had been the moment I had been dreaming of! We couldn't wait to examine her little body, introduce her to Boots and Beans, rock her in her room...we had been patiently waiting 44 days!

When she was finally home, I think everyone, me included, thought everything was going to finally be "normal". It was only then, when I finally had time to come up for air and think about what just had all happened, that my emotions overwhelmed me. And it was horrible. My baby was finally home now, and I was crying - about what? I wanted it to be over and get on with our lives. I blamed myself so much and thought that if I could have just done more, we could have lasted longer. I felt embarrassed that there was a certain way she had to be fed, that didn't look "normal". I felt embarrassed and sad that breastfeeding was such a struggle. I felt guilt that we didn't have a lot of people visit her in the NICU, but that cut into our precious time with her. Even though she was home....everything that had just happened wasn't going to just go away.

I used the support of my mother, my sister and especially Chris to work through my emotions about what had just all happened to us. When I went back to work, things felt worse. I wanted to be at home with my precious Lily and I didn't want to miss anymore, I had already missed so much. I had 17 weeks off of work and had burned all of my sick time that I had been saving for babies, but only had 8 weeks off with her at home - it wasn't fair. Stress at work wasn't something I could "handle" anymore, I was already handling too much. I was still a mess, why wasn't I getting better, when Lily was doing so good? I called my therapist up and set-up another appointment.

Through all of this I have finally realized, that it's okay to be sad about what happened. It has only been 8 1/2 months. We went through something traumatic. For a long time I wondered if I would ever be the same Shana everyone used to know? Would I ever be the goofy mother I had always imagined myself to be? Or would I be serious and worried all the time? Chris even said in our last therapy session that there was a time when he wondered if he would ever get his wife back? That broke my heart. But, I am starting to get back to the old me and I can feel it. I am getting better. And I know that I am not completely healed, but I will be in time. I might never be the same, this has definitely changed me, but I will be a new, improved version of my former self. I know that this experience, as hard as it may be, makes me a better mother to my daughter. I am grateful for every moment we have together.

Through all of this I know one thing for sure...Chris is the best person I know. He stood by me and always believed in "us". He even goes to therapy with me (even though I know he doesn't need it). He has supported me in my journey to get over all of this and has helped me come to terms with what happened. When some guys would have walked away because it was too hard, he didn't. We are a stronger couple than we were before and have a deeper love for one another. Before this we didn't know what "hard" meant. Lily will grow up surrounded by our love that is deeper and richer than it used to be, and that is something I am so thankful for.

If you have floated here from preemie message board I post on, and are going through something like this, I just want to give you hope, that someday it will get better. And to those ladies on that board - thank you...for listening, giving advice, supporting me and others - it is the one place I know I can go when it seems like no one understands what I am going through. Thank you for making me feel that I am normal.

To help you better understand what we are going through, or anyone that has had a preemie is going through, these sites explain it well:

Grieving and Coping After the Birth of Your Premature Baby
Ambiguous Loss Best Blogger Tips


Jessarella said...

Hi, I am a floater from the Bump. I have 33 week preemie twins. I felt everything you felt and still do to a certain point even though they are 16 months old now. Us preemie mothers are bonded by something no one should have to go through. We might never be able to drive up the road to that hospital again without getting chills, but each day gets better. Your daughter is beautiful.

Trish said...

*wiping tears*
very well written..

ivory and jamie said...

so beautifully written :)

Mrs. S said...

Thank you. We just started down this road last week. My daughter was born at 32 weeks due to
HELLP syndrome. You've reminded me that everything I'm feeling is normal... and knowing that means a lot.

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