Saturday, July 14, 2007

I have a confession....

Premature babies have been in my life in one way or another since 1996. The first "preemie" I knew was my brother. He was a 32 weeker. At at 16 (my age at the time of his birth) I did not know how serious this was. I knew that he was hooked up to all these machines and tubes and he was small and it was very scary. When he came home I believe 2 months later he had this monitor and it would go off for no reason at all sometimes and scare the living day lights out of us. This was the extent of my knowledge of preemies then. I didn't know the horror that my Dad and Vicki had to go through then. How terrified they must have been. They never really let on in front of me. My brother is now 11 years old. He's tall and he's healthy and he LOVES video games.

The second preemie that I knew was my best friend Olga's daughter, Anna. She was born at 27 weeks. I met Anna when she was a year old. I didn't know what Olga and Anna had to endure when she was born either. I knew there were some issues from Anna being preemie that she's had to deal with in later years such as ROP. Still I didn't know what any of it meant.

She gave birth to Tyler at 25 weeks. Sadly he passed three days after he was born. I didn't know Olga at this time either so still I didn't know.

I gave birth to Brennan and the stinker was 2 weeks late. So he was a 42 weeker! LOL. I remember them telling me right before we were supposed to go home that he had jaundice and that he might not be able to go home with me. I remember crying and thinking that it was the worst thing in the world to have to leave my baby in the hospital and go home. I couldn't imagine. Finally the doctors allowed us both to leave at the same time. Still at this time, I didn't know.

Then Olga had Joey. He was also a 32 weeker. He was just amazing. He came home with no problems and at age 5, he's still strong and healthy as he ever was. So once again I didn't know.

I met Stephanie in 2005 when I moved to Utah and she gave birth to Joey. He was born at 31 weeks. I remember visiting them at the NICU the day after he was born. I remember sitting there taking it all in and thanking God for never having had to endure that. Joey came home after 15 days in the NICU. He was just fine until about 6 months of age. Joey regressed for some reason and over the span of 10 months, he got worse and worse. They found out that he was blind, he had seizures and so much more that it would take forever to list. Eventually, at 16 months old, Joey passed away. This was just a few months ago.

You see I've always believed there was this club that I didn't belong to. One that I heard about often and I'd listen, and smile or nod, cry or hold the hand of a my friend, give some encouragement but I'd never known exactly what it meant to be in that club. It was one I'd never hoped to belong to. It was one I didn't understand, it was one that I prayed stayed far away from me. This club is being a mommy of a preemie. This club is one that I watched from afar. This club that I joined reluctantly in 2006.

I found out February 2006 that I was pregnant again. He was due October 31, 2006. I delivered him via c-section September 18, 2006. He was a 34 weeker. Finally I knew. It's not a world I ever wanted to personally be a part of. It's not a world I ever thought I would be a part of. Being a mommy to a preemie was so far beyond my imagination that I was just in shock. Even after knowing these other preemies in my life I still had no idea what was in store for us. Our "ride" (and that's EXACTLY what it was) in the NICU was so up and down that day to day I didn't know what to expect. I had to put my complete trust and faith into these people I did not know to make sure that my beautiful baby would eventually come home with me. Finally I knew what it was like to not only leave the hospital without my baby but also what it was like to have him leave the hospital before me only to be taken to a better hospital. A hospital that was equipped to handle his needs. I remember walking into the NICU for the first time. It was scary. I knew what to expect since I'd been in one before but it's a whole different world when you are visiting your own baby. His NICU stay was the hardest 25 days of my life. I can't imagine what it was like for him but I know it was hard on me. I thank God daily for the neonatologists and the nurses at St. Marks NICU. They were amazing. The day he came home was the best day of my life. I was sooo excited and happy. I didn't sleep at all. I kept staring at him in his cradle. The cradle that his daddy and his brother had both slept in as babies.

I know this is a long post but I'm getting to my confession I promise. Several months ago someone said to me that they'd say I told you so when Jaxon wasn't "perfect" like I expected him to be. I was extremely hurt by this and over the last 6 months I've let it consume me. I've let it determine what I say and how I say it. I've let it live in my heart and I don't know how to let it go. I realize that my telling you all about my experience with preemies doesn't really have anything to do with what I'm about to say except that until Jaxon I didn't know what it was like. Basically I've lied due to what was said to me. I've lied to everyone including myself at times. Jaxon is somewhat delayed. He is a very happy baby. He is healthy for the most part. He has rolled over about 4 times in the last 6 months. He just began to sit unassisted. I have to sit him up he can't get into that position on his own. He doesn't get up on all 4, he doesn't crawl or pull up, or cruise. He isn't doing the things that a term 10 month old does. He's on maybe a 5 or 6 month level. He's coming along at his own pace and that's fine. It's taken me a while to come to terms with it because I didn't want this person to be right. I didn't want to admit that it caused me more worry than I'd like. But I realized that as I was hanging onto the lies, I was hanging on the the hurt and anger. It was keeping me from really and truly enjoying my little man. I enjoyed him but in the back of my mind it's always been there so when I was playing with him or holding him it wasn't just playing and holding him, it was me trying to make him do things at my pace. Things to prove this person wrong. I've now decided that in order for me to move on, heal, and enjoy my sweet baby, I've got to forgive this person for their transgressions against me. We may never be friends again and they may never see this but I'll know. I'll know that I'm making my peace with it. I wish this person all the best and I know that due to some very bad things that have happened in their lives the last few months, that they will be healing too. I hope and pray that everything works out for them. I truly mean that. I'm forgiving and I'm trying very hard to let it go. I will have to leave it at the cross daily I'm sure.

For the rest of my friends and loved ones, I'm sorry. I never meant to lie to you or hurt you in any way. I hope that you understand that it was mainly me lying to myself over and over. Trying to prove something that there is no need for me to prove. My baby is happy and healthy. He is learning and doing new things all the time. They may not be huge things but I'll cherish even the small ones. I promise from now on you will know exactly what I know about how Jaxon is doing. I promise to embrace being the mommy of a preemie instead of trying to run from it. I still have many things to learn and this has been one of them. Thank you all for listening. It's something I tried to say many times but wasn't able to. I even started this blog two weeks ago and was just able to come back and finish it. I guess I'm making progress. :)


Special K ~Toni said...

Unfortunately, I am a member also. Luke was my early bird. Luke has been developmentally delayed from the get go. He didn't utter a single word until he was 3.5. He didn't sit up until 8 months. Walked at 16 months. It was difficult for me at first. David (my eldest) did everything early or 'right on time'. With Luke I had to learn, very quickly, that he is an individual, toss the baby books, and enjoy each moment, each milestone.

Luke is now 5 yo- He has been in speech therapy for over 3 years, and sometimes I wish he would hush. LOL. According to all the "experts", he is on track with children his age, just small for his size.

"Normal" and "perfect" are overrated. Luke is unique, will do all in his own time, and I thank God every day for blessing me with him!

Denise said...

Thank you for sharing your story with me Toni. I really appreciate it. I makes me feel better knowing there are others out there who know what I'm going through and that it's ok. :)

Nancy Brown said...

Thanks for lying!! I mean.. my 2 year that doesn't walk or anything means I don't get it.. I understand. There are some people I won't tell the "whole" truth to certain people in my life for the same reason. Frankly we do it as a coping method. If no one else notices and we don't tell them then its not "real". Be aggresive on the therapy and I am sure you will be amazed at what can happen.

Qtpies7 said...

Every child is different, and he is not that far behind. Or Toni's Luke, either. I had a full term child who did not talk until he was 4 with speech therapy, and he didn't read until he was in 5th grade, the doctors say nothing is wrong with him, because they don't want to acknowledge an immunization injury.
I have another full term baby who did not walk until she was 15 months old. There was NOTHING wrong with her, she is active, extra smart, normal size, she just didn't walk. Of course 5 siblings were were at least 7 years older than she is probably meant she didn't NEED to walk.
You don't owe anyone the "truth" but you should feel safe to talk about it if you need to. He's right on track for a premie, and you just hold on to that. Most premies need some sort of therapy or help in some area, so he IS perfect for him.

Smooches, Kara said...

Cameron is 3.5 and still doesn't call me Mom. He barely speaks at all. Quiet little creature actually. He has the 'official' diagnosis of Autistic.

But even through the worst of it I know I was meant to be his Mom. He needs me. And I have always loved him regardless. And I know he knows that! No matter that he doesn't tell me.

I feel a need to go smooch on him ;)

Bernie said...

Hey there,
From my first relationship, I have 3 girls. Number 1 was a 33 weeker, number two was a + 2 weeker but number three was a 26 weeker! She weighed in at just over 1000 grams and my wedding ring at the time went up to her thigh. That was 12 years ago.

Last week, I saw her performing on stage and there is not a thing that would suggest that she was so.

We are now (my new wife) trying to have a baby, and no matter what, a baby is perfect as it is the end result of the love you share with your partner, and that is perfect!