Etched Forever: Different

A moment in time. Frozen. Forever. Etched forever in my mind.

Staring at my face in the mirror after my water broke in disbelief that this was happening.

Calling my husband and him telling me I needed to go to the Labor and Delivery immediately.

I was only 33 weeks. I was all alone with my 19 month old daughter. My husband was seven hours away. This couldn’t be, shouldn’t be happening.

Dear Lord – Help me.

Alone in my hospital bed. No one to hold my hand. No one tell me it was going to be okay.

Scared. Yelling at my husband that if he didn’t get here before I delivered, I would never forgive him. Crazy, pregnant hormones.

Relieved. My husband arrived.

Contractions. Very Painful back contractions. I remember the nurse asking me to quiet down.

I just wanted relief so I agreed to the c-section.

Scared and Cold. Naked. Vulnerable. Praying for God’s protection. So cold. So cold. And so very scared.

My husband was behind the curtain with me. I was wanting to hear desperately my son’s first cry, so I would know he was okay.

After only hearing a brief cry the silence in the room was deafening. Why couldn’t I hear him? I yelled at the doctor. IS HE OKAY? Yes. They had taken him through the NICU window.

I would not be the first person to lay eyes on my son. I would not be the first person to touch his skin. I would not be the first voice he would hear. Oh. My heart.

Cold. Shaking. I couldn’t breathe. I just wanted the c-section to be over. I started coughing. I couldn’t stop. And I was so cold. They couldn’t tell me if my son was okay. I just couldn’t breathe. Then, darkness. The anesthesiologist put me out after I agreed.

I should be cheerful. Put on my positive mask. I couldn’t let people know that I was scared for my son. Seeing pictures of my son with his CPAP was tough. But he was beautiful and precious.

The bruised hands. The bruised feet. The bruised head. So many pokes on his tiny body. Good, Lord. Why? I was crushed on the inside. This was all my fault. Why had my body betrayed me? Why had my body caused my son to be into the NICU?

I drank Ryan in every chance I could. His sweet smell. His sweet snuggles. It was never enough and sadly, every night, I had to leave my son in the hands of someone else. It should have been at home with me. Nursing freely and without the eyes of others.

Blood in his stools. Nurse, is this normal? Panic was overcoming me again. This can’t be happening. I don’t think I can endure this.

“This could be devastating.” I will never forgot those words. They are forever etched in my mind. Ryan had an infection in his bowels. Oh, Dear Lord – Please help my son. See the train track in the x-rays of bowels? That is a sign of NEC. I could see the two parallel lines on the X-ray. There was no mistaking them.

Another tube. This time down into his belly. Crying. And more Crying. And then more. Dear Lord – What had I done? Ryan just wanted to eat, but he couldn’t, it was to help him get better. A whole seven days with no eating. Just fluids and medicine. His sweet smell went away. He was lucky though. They caught it early and was able to treat the infection before it became anything really serious. Thankful. Extremely, thankful.

It was during this week my husband had an argument. I don’t remember about what exactly, but I think it had something to do with the amount of time I was spending at the NICU and I had a husband and daughter at home that needed me too. Guilt. More Guilt.

Ryan needs me. I don’t know what it is, but there is something different about him. There is something different about him. He needs me. Those words are forever etched in my mind. To this day, these words I think about often. It’s the whole reason I’m writing this.

There is something different about him. Did I know in my hearts of hearts then that he would be different. Why had I thought that?

I’ve been strongly bonded to Ryan since I was able to hold him. Not more than my beautiful daughter. But it is a different bond and something I haven’t yet been able to explain or put into even vague words. I just knew that he would need me and need me in a different way. A sixth sense? Mother’s instincts? God preparing me for our journey that was ahead? I don’t know but that moment is forever etched in my brain. Staring at him in the NICU. Watching him sleep. Holding his tiny hand and promising him that whatever it is he needed from me, I would give it to him.

These past few weeks, I have been coming to term with my son’s diagnosis of Autism. I’ve been processing it quietly – in the confines of my mind. But over the past few weeks, those words keep echoing in my head. There is something different about him. He needs me. My beautiful son. My laughing son. My rambunctious son. My happy son. He needs me…. but I think I need him more than he needs me. I love you, Ryan Scott Grover.

 

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A Preemie Irish Poem

A Preemie Irish Poem – reposted from Irish Premature Babies

It’s the little things that make life worth living,
It’s the little things that help us make it through.
I never knew how true those words were,
Until I first set my eyes on you.

… I feared because it was too early;
I cried because it was too soon.
Yet I underestimated
The strength in one as small as you.

You were born a fighter, a warrior;
You would not quit nor move on.
You strove, you fought, you tried,
Until your battle was won.

When hope might have faded,
When the trial seemed too great,
A tiny child, despite the odds,
Fought what was thought fate.

And a little baby triumphed,
A baby thought too small to live,
A baby knew that life
Is the most precious thing to give

Working through the emotions…

So the long time followers of my blog have probably notice a shift in my blog focusing  on NICU resources. I recently became a Parent Support Volunteer at the NICU where Ryan was born. Before Ryan had left the NICU, I always knew it was something that I wanted to do – to give back to other families in the NICU. I must say it was a whirlwind of emotions coming back to the NICU for the first. Just sitting in the training, hearing codes over the intercom system made my heart race. After the training was finished, they gave a us a tour of the NICU. It’s a rather large NICU with the capacity to fit 48 babies. They have 4 different pods – within each pod there are only single and double room with a nurse’s station in the middle. I only had seen two of the different pods while Ryan was in the NICU and certainly never wandered around any of the pods during Ryan’s stay. It was weird revisiting the rooms he had stayed it. They were empty. I just kinda got this eerie feeling and my breath caught in the back of my throat. I didn’t want to step foot in those rooms and I haven’t had to yet. Parents that experience a traumatic NICU stay often suffer from post traumatic stress disorder (PTSD). While, I don’t believe that I have full blown PTSD or even a moderate class of PTSD, I have realized that I do have certain triggers and I don’t know if it possible to fully recover from them. My brain tells me that I shouldn’t still have these feelings, but my heart and soul know that I have them. I just don’t think you can ever really just “get over” seeing your child lay helpless and suffer and know there was NOTHING you could do take away the pain. However, with all the said, I must say that I have experienced a lot of healing since becoming a volunteer. Going back to the training night, I cried big tears and heart broke again telling my story. I realize I still have a lot of emotions in my birth stories and Ryan’s NICU stay. I think that in telling my story to a group of other moms who completely understand what I went through was my first step in healing. After a few trips to the NICU, my heart began to feel lighter and no longer was the NICU of place of pain, but it has now become a place of hope, healing, and miracles. It has always been that, but I had only felt a lot of the pain that the NICU brings to a mother’s heart before. I love every minute of the being in the NICU. I feel like I am giving back. It’s one of the few times I am away from my family that I don’t feel the guilt that I may be missing out of something at home. As the director expressed to me so beautifully with empathy, “It fills your cup.” Being a parent support volunteer does fill my cup and overflows into a healing place in my heart hoping that by just listening to other families tell their own stories that I might be helping to heal their hearts as well.

One of things that I was also scared to do was look at the pictures of Ryan’s CD that we mailed to us after we left. These were pictures that Parent Support Volunteers took along with Ryan’s nurses. I was afraid to see some of the pictures on the desk fearing they would bring back some terrible emotions. I often held a lot of my fears about Ryan inside. I was also too afraid if I said my feelings outloud that somehow they would become reality. After going around one night in the NICU to take pictures of the babies for the first time, it gave me courage to look back at our disc of picture. Before that night, I had only looked at it briefly once when it arrived. This first picture is of Ryan when he battled NEC (infection in his bowels) which was the hardest part of his NICU stay. I was holding Ryan in this picture, his nurse thought his little hands under his chin were so cute. That is an anderson tube in his mouth. It was sucking everything out of his belly.

Here a picture a nurse took while we were away. He looks so sweet holding onto his soothie pacifier. This was probably a few days before he was released.

Here is one I believe a Parent Support Volunteer took very shortly after his birth. I love this photo and his tiny little feet.

While some people will never understand my emotions and the pain I have associated with the NICU and probably would just tell me I should be over it by now, I’m okay with where I am. I am thankful to be a part of such a wonderful program that has also allowed me to heal more by serving.

Life After NICU

Life After NICU Subway Art

I recently (like today) came across Life After NICU support group on Facebook. They posted this beautiful subway art made by Vintage Blu Portraits. You can download this FREE, PRINTABLE Subway Art for FREE at Life After NICU blog. I LOVE IT! Just these few simple words but it invokes so many thoughts and good memories… Thank you so much for sharing these with other NICU moms and allowing us to have this free download.

My Story…

Becoming a Parent Support Volunteer for the IMC NICU, I was asked to write a short summary to be posted in the Parent’s Lounge NICU to give them an opportunity to get to know the Parent Support Volunteers better. Here is my “short” story:

On August 22, 2008 our lives were changed forever by the early arrival of our precious baby girl, Kaylen. She was born at 34 weeks via c-section due to preeclampsia. The pregnancy started off as high risk due to an autoimmune condition that I have. I was monitored very closely throughout my whole pregnancy. We were overjoyed when we found out we were pregnant. I had been told previously that I might not ever be able have children, so Kaylen was an unexpected but most welcome surprise. About 11 weeks into my pregnancy, I awoke around 3 am to kiss my husband goodbye as he was getting ready for work, when I laid back into bed, I started hemorrhaging blood. We quickly went to the ER to discover that our baby was okay, but my placenta had separated about 50%. A most insensitive doctor sent me home with a prescription of Lortab and told me that I had a 50% chance of miscarrying my child. Praise God, my placenta healed completely. After 32 weeks of pregnancy, I began exhibiting my first signs of preeclampsia: I gained 10 lbs in two weeks, my blood pressure was up, and swelling of my body. I started NST (non-stress tests) twice a week to make sure my daughter was doing well. At my last NST, I had some protein in my urine. They called me back the next day to come pick up supplies 24 hour urine test. Unfortunately, by the time I went in, I was feeling horrible and was a crying mess. My perinatologist ran more urine and blood tests, examined me, and recommended that I be delivered that day. He called my OB and sent me over to a hospital. That hospital’s NICU was full so they sent me over to another hospital. I must add through all of this, I was complete denial about even the possibility of giving birth that night. I just couldn’t comprehend and was not prepared mentally to have a premature baby. My OB didn’t come to hospital until 8 pm that night (which also led me to think that I wouldn’t be delivered that day) but at 8:56 pm, my daughter was born to us at via an emergency c-section. I remember watching from the table as they cleaned her off and the NICU nurse letting me give her lots of kisses before she was rushed off to the NICU. Little did I know at that time I wouldn’t be able to even see her, let alone hold her, until 3 days later. It was pure heaven when I got to hold my baby girl for the first time. Luckily, her complications were few. She was severely jaundice due to our ABO blood incompatibility, but her bilirubin stabilized, she learned to eat quickly, and she was home after 10 days in the NICU.

Fast forward, 19 months later, I was pregnant again with my second child, Ryan. I was 33 weeks along in my pregnancy when my water broke. Not even two months before, I had made a major move from Las Vegas to the Salt Lake area due to a job offer. I had given my two weeks’ notice to my job in Las Vegas and headed up to Salt Lake, pregnant, with no family in the area, and pretty much being a single mom to my 17 month old toddler while my husband took care of our affairs back in Las Vegas. Again, this was a high risk pregnancy due to my autoimmune condition. I really didn’t have any issues with this pregnancy. In the back of my mind, I did fear getting preeclampsia again, but I never exhibited any sign of preeclampsia. Because of my issues with my first pregnancy, I continued with the NSTs twice a week until my water broke unexpectedly. I was scared and nervous. I knew what it meant to have my water break at 33 weeks and I knew I was in for another NICU stay. I was able to hold off labor for another 3 days giving the chance for the steroid shots to help improve Ryan’s lung function (and giving my husband time to drive here from Las Vegas). Ryan was born to us at 11:00 am on March 30, 2010 via c-section. He was also severely jaundiced. He was on the CPAP for just one day and on oxygen for 3 days. After about 10 days in the NICU, Ryan came down with an infection in his bowels (NEC – which is rare for someone born after 33 weeks) that was caught early enough that he only had to endure seven days of no eating, a PICC line, and antibiotics before he was better again. He quickly learned how to eat and nurse well after that episode, so in another week, after 29 days in the NICU, he was finally released.

Currently, Kaylen is a healthy, happy, constantly talking 3 ½ year old. Ryan is a healthy, active twenty-two month old who loves dinosaurs and spends a lot of his day “roaring” with his toys. We discovered that Kaylen has food allergies to eggs and dairy and Ryan is allergic to nuts and is sensitive to milk. He was diagnosed with asthma but treated with daily medication, he is does great.

I very blessed and lucky to have had Ryan at IMC with the Common Bonds program. We literally had no family here and I found strength from the volunteers from Common Bonds in dealing with Ryan’s NICU stay. That is why I have a heart to serve other NICU families through the Common Bonds program to offer hope and encouragement to other families with an understanding heart and empathy for their situation.

Kaylen, 3 days old

Ryan, 3 days old

Welcome to Holland

Holland vs. Italy

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting. 

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.” 

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.” 

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay. 

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place. 

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. 

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts. 

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.” 

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss. 

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

* * *

©1987 by Emily Perl Kingsley

This poem so eloquently describes what the journey into the life of NICU feels like. It wasn’t what I planned for my babies. It was being immersed into a world that I knew nothing about and that I did have to learn a whole new language for. Even with having two preemies in the NICU, our first stay with Kaylen in the NICU didn’t completely prepare us for the journey that awaited with Ryan. I must say that is what is beautiful about “Holland” is all of the special babies you met, the strongest moms you’ll ever know, and all the NICU staff that helps get you through each day at “Holland.” We are forever bonded by our trip to “Holland” together. It is those relationships that make Holland priceless.

Happy 1st Birthday, Ryan! Reflecting on the past year…

I can’t believe that a year ago today, I was 33 weeks pregnant and in a few days would give birth to my son, Ryan Scott Grover. This March has been an emotional month for me. I keep thinking back to when I gave birth to this precious boy of mine and the NICU journey of ours. At times, I would even say that it haunts me. After reflecting this past month, I am coming to the conclusion that I don’t know if I fully processed my feelings while he was in the NICU. With all the changes in our family and lives this year, I have been, just running from one circumstance to the next just trying to keep up. While I know that Ryan is VERY fortunate that his complications were few and his NICU stay was relatively short (in comparison to others) a mere 29 days, it was still heart wrenching. I will never forget seeing IVs in his head, an Anderson tube down his throat, and hearing a doctor tell me when we learned he had an infection in his bowel “This could be very devastating.” I still can’t shake the feeling of helplessness I felt at seeing my baby boy suffer and knowing that I could do nothing for him. Boy, how I treasured the moments when I got to hold him and have kangaroo time with (skin to skin time with mommy)…  minutes after having him on my chest, I would start fall asleep. Those were the only times while he was in the NICU I felt true peace. Ryan would just snuggle down on me and he would always fall asleep too. Just feeling the warmth of his skin on mine and how at peace he was with his mommy, it felt like I was doing something for him. I couldn’t  take away all the poking and prodding and all the long nights when I couldn’t just hold him when he wanted me, but, knowing that I could comfort him and make it better for him for just a little while… even if just for a few minutes out of the entire day. I know for most these will be just words on a paper, but I know for all the other NICU mommies, you will know that pain that I am trying to express, but words will never suffice.

And as I look into the eyes of my baby boy who will very soon no longer be baby, I am incredibly blessed.  He can melt me with those big brown eyes of his. I think that Ryan may be a little small for his age and developmentally may be a little behind as well, he is right on target considering he was born seven weeks early. He’ll be one on March 30th, but was not supposed to born until May 15th. He eats table food now and refuses to eat baby food now. He can say mama and dada. He claps his hands. He loves to mimic as well and has been doing that for some time now. He gets into everything these days. I think he’s probably a couple of months away from walking, but that doesn’t stop him. He seems to be very stubborn and strong-willed. He lights up when he sees his big sister, Kaylen. It’s been fun seeing them interact more and more each month.

One question that I have been asked given his prematurity and the fact that Kaylen was premature as well is would we have any more? Would we put ourselves though another NICU stay?  I can’t see the future or what God has in store for us, but I don’t regret any of it. I have been blessed beyond words with these two very precious gifts. As I tell my kids each night: You’re perfect just the way God made you and He made you very special. I believe that He formed them perfectly and I trust in God’s timing in ALL things.

Happy Birthday, Ryan! I love that God chose me to be your mommy. May you always know just how deeply you are love and what a precious gift you are to us.

Psalm 139

13 For it was You who created my inward parts;
    You knit me together in my mother’s womb.

14 I will praise You,
    because I have been remarkably and wonderfully made.
    Your works are wonderful,
    and I know [this] very well.

15 My bones were not hidden from You
    when I was made in secret,
    when I was formed in the depths of the earth.

16 Your eyes saw me when I was formless;
    all [my] days were written in Your book and planned
    before a single one of them began.