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.

The Loneliest Walk

Another NICU Parent Support Volunteer shared this song with me. Thank you Christa for sharing this song. I hope that it may give comfort and encouragment to other NICU moms and they will know they are not alone.

The Loneliest Walk By David Osmond

“She pushes ‘L’ on that old elevator door
Her heart is broken, arms are bare
The doors are closing and she’s staring at the floor
There’s still a piece of her up there

It seems like yesterday she saw him on the screen
Painted a room and picked out names
But now she has to leave him under big machines
To keep alive his tiny frame
She’s on the way to her car but it’s never felt this far

With each step she takes there’s another to follow
And one more ache, one more tear to swallow
She’s gotta keep moving,
Forget about the bruising inside
Through the loneliest walk of her life

He pushes up his glasses, staring at her name
One last time before he leaves
He saw this coming but to see it now, engraved
It’s still so hard to believe

It seems like yesterday they kissed and made their vows
Her favorite flowers in her hair
He’s staying later than they normally allow
Clutching those flowers in a prayer
And on the way to their front door, no hand to hold there anymore

With each step he takes there’s another to follow
And one more ache, one more tear to swallow
He’s gotta keep moving,
Forget about the bruising inside
Through the loneliest walk of his life

He pushes up the board they’ve tied onto his shoulders
He bears, with dignity, disgrace
He hears the jeering and the wind is getting colder
Tastes the blood upon his face

His body bruised an back still open from the scourges
The consequence of wicked men
He knows no man on earth has ever deserved this
But still He bears it all for them
And He keeps moving up the hill to do His Father’s will

With each step He takes there’s another to follow
And one more ache, one more tear to swallow
We all stand by and watch as the price is paid
Through the loneliest walk of His life
So we don’t feel alone in the night
We can have His hand holding the light
Through the loneliest walk of our lives.

Keep pushing through this lonely walk you’re going through
‘Cause someone’s walked this way before

A hanky to hold tight

I wrote this the night before I left the hospital. It made me cry my eyes out and I did use the hanky and left it with Ryan at night. Although going back and reading it today, I think it was probably a Parent Support Volunteer that gave it me and in my fogginess assumed it was nurse.

A NICU Poem

by Sharon Williams Grover on Friday, April 2, 2010 at 8:52pm ·

As tomorrow is my last day in the hospital, it is becoming a very emotional time for me. The care that both Ryan and I have recieved here has been truly outstanding. I feel it in my very soul that God did lead the way for me to give birth here which gave Ryan the best opportunity he could have been given. It’s very heartbreaking to leave the hospital without your baby.

A few days ago, a NICU Nurse gave me a NICU Parent Survival Kit. It has candy in it with encouraging reminders and thoughts to help you deal with NICU stay. In the package there was also this poem and it really touch my heart. It was wrapped in a little blue hanky.

It goes:

It’s hard to come into this life
And not have Mommy’s touch.
I know the doctors mean to help
But I miss her so much
We had many months together
When I was tucked inside.
Now we are lonely for each other
and we both have cried and cried.
But someone gave my mommy
a hanky to hold tight.
She sleeps and holds it close to her
It’s filled with love each night.
When mommy comes to see me
She puts it by my skin
It makes me feel so happy ’cause I feel my mom again
I love these little hankies
They work just like a charm
And I’ll cuddle, smell, and hold them tight
Till I’m back in mommy’s arms

Peek-a-boo ICU

I came across another great website: Peek-a-boo ICU. Not only is this site a wealth of information for preemie parents, but they also have a shop where they sell journey bracelets and individual charms. I definitely want to get a bracelet and start collecting charms. It is such a neat way to remember your journey or perhaps create as you are on your journey. They have beads that symbolize the week your preemie was born, NICU Beads that tell of medical complications, but also inspirational bead that symbolize your preemie fighter and your own personal journey. This is the first that I have seen of this idea but I can imagine that it would always have a healing effect in being able to go through your story again in such a beautiful way. I can’t wait to see what my bracelet collection is going to turn out like! I copied the image below from their site, but you can click on it to see everything they offer. Don’t forget on the blog link to see all of their helpful articles.

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

Priceless Moments

One of my co-worker is getting married soon and another co-worker is making a hand-sewn quilt for her. It is beautiful. I was excited to do a little hand quilting. I brought Kaylen along because it was right after her ballet class. While I was quilting the layers of fabric (mind you not doing such a great job), my needle got stuck when I was trying to pull through four stitches at once. I started grunting trying to get the needle pulled when Kaylen comes up me and very loudly says “Mommy, you making yuckies?” My face starts turning red and my co-workers look at me. I tell Kayeln, “No, I am not.” Afterward, I confirm to my co-workers that is she is indeed asking me if I am going #2. Now, it’s an ongoing joke at my work. What a priceless moments with my cute daughter….