Parents of Preemies Day

Are you doing anything special to celebrate the first ever Parents of Preemies Day?

We did.  :)

This morning, our two families met up at Rush-Copley to assemble gift bags for current NICU families.  Then, Kelly and I were able to go into the NICU to deliver them.  The dads plus Teagan and Connor were able to catch up with their former doctors and nurses while we were inside.  We spoke with 2 moms who were both discharging today (YAY for them!) and left the rest of the bags at bed sides.

Not gonna lie... it wasn't easy going to the hospital today, for any of us.  Lots of emotions.  I was in tears by the time we stepped back into the hallway.  This was only my 2nd time back in the NICU since we discharged, and every time it gets a little easier.

Sometimes it's hard to think about all we went through during those 4 months in the NICU, and how alone and isolated we felt.  While the staff took amazing care of our son, and saved his life (and future quality of life) many times over, there wasn't any support for parents offered at the hospital at the time.  I truly believe that having parental support during our NICU stay would have made a huge, positive difference in our experience, which is why I am 100% committed to this cause.  No parent should feel alone in their journey... both in the NICU and after the NICU.

We're still working hard to build up our site and to formulate our plans and efforts.  We appreciate every single one of our current 684 (wowzers!) followers on Facebook, and we encourage you to continue posting your comments, stories, and questions there.  As a community, we can help each other get through the hard times and cheer each other on through the happy times.  Thank you for being our preemie friends!

A HUGE thank you to Graham's Foundation for honoring us as preemie parents today!

Local Event!

Kelly and I are so excited to announce 

our first local event!

(click on the image to see it larger)

We're looking forward to meeting/seeing all of you
and indulging in some delicious cupcakes! 

Please RSVP by April 6th 

on the Facebook Event Page 

or via e-mail.

(Directions to Cupcakes 2 Remember and map here.)

View Cupcakes 2 Remember in a larger map

Discussion: How to deal with insensitivity

If I had a dime for every insensitive comment we received since embarking on our NICU journey, I'd be rich!  You definitely will grow a thicker skin over time, but that doesn't mean that the comments will ever hurt any less.  I've found that very few of our friends and family truly "get" our situation and all that we've been through - that's why we've decided this group is so very important!

Here's an e-mail we recently received from one of you:

Last week our friends had their first baby, a little girl. The pregnancy and birth went just about as well as expected. She labored for 10 hours, hard labor for 1 hour, and delivered an almost 8 pound baby girl. Two things put hiccups in their perfect birth plan...one was that the mother's blood pressure dropped dangerously low when given the epidural so that had to be brought back up with meds and the other was that the baby was born with the cord around her neck and had to be monitored for two hours in the nursery post delivery. These two things are scary and to the first time parent, even worse. But to hear them talk now, you would think that they were both at death's door. The dad even said as much when he told us, "I thought I was going to lose them both."

Now keep in mind that this couple is very good friends of ours. They saw what we went through when I ruptured at home, was rushed to the local hospital, and then was life-flighted to the closest trauma center. They watched as we delivered a 2 pound baby boy and he struggled to breathe as he was on the ventilator for a month and after 60 days in the NICU we brought him home. So, why, why, why would they be so insensitive as to act like they have a remote idea of what the fear of losing the mother or the baby is like?

I don't want to be one of these mothers who tries to "one up" every birth I hear about. Honestly in our circle of friends and acquaintences, we'll win that battle every time. If they think they had a traumatic trip to the hospital, let me tell my story. If they think their baby had jaundice, let us show them our pictures. If they think their emotions are crazy, try experiencing the emotions you feel the first time you have to leave the hospital with your baby in the NICU. It's not a conversation I want to win....it's just the facts.

But among other preemie parents, our situation is pretty darn good. For one thing, we came home with our baby. Too many others leave that hospital with empty arms. Others have feeding tubes, monitors, surgeries, and debilitating problems for the rest of their lives. We haven't experienced that (aside from the monitor for a short time) so I can't even begin to understand what those things are like. And in that conversation, other preemie parents "win" the one up contest.

So my question is, am I being overly-sensitive to our friends comments? Through their "woe is me" comments and normal struggles of first time parents, I've kept a smile on my face and offered as much comfort and encouragement to them as possible, but the moment we walk away I break down in tears that haven't flowed this steadily in a long time. I would never have the audacity to tell them how much their words have hurt. Before I was a preemie parent, the things that happened to them in the hospital would have brought me to my knees as well. But to hear them refer to the baby's "rough start" and act as though there was a true struggle is almost offensive to me after experiencing true life and death struggle.

I hear the words from our friend, "I thought I was going to lose them both" over and over in my head. MY husband was the one who kissed my forehead as the flight nurses tightened the gurney straps and loaded me into the airplane. MY husband had to drive 3 hours to get to my side, not knowing in that time what had happened, what would come next, and even if he would ever get the chance to see me or our baby again. MY husband could say those words and mean them, feel them, and experience them.

If anybody struggles from PTSD from having a preemie, I'm wondering if some of these feelings could be triggered from that. I haven't been diagnosed with PTSD but I know for sure in the months after our son was born I battled depression. Sometimes, what I call "the preemieness", absolutely consumes me. It's pity, guilt, sadness, and now even a little bit of pretentious and of course complete joy when I look at my son...all wrapped into a crazy mom.

I don't know that there is a question here or anything like that. I just needed to be able to share my thoughts and other parents who have experienced this as one of life's traumas would be the only ones who can identify.

- Anonymous NICU Parent "Club" Member

We want to know what you all think... I'm sure many of you have had similar experiences (I have, which I'll address in a future post.)  

Please weigh in and offer 

"Anonymous NICU Parent 'Club' Member" 

your support and advice! 

 

Feel free to comment on this post below and/or on the FB page.  

Book Review: Half Baked

I originally posted this on my blog in October 2010...

Recently, the book Half Baked, by Alexa Stevenson was recommended to me. 

The synopsis from Amazon reads:

“A funny memoir about struggling with infertility and giving birth to a not-quite-two-pound premature baby? Blogger Stevenson manages to pull it off. In this tragedy with a happy ending, Stevenson goes through in vitro fertilization (IVF), gets pregnant with twins, loses one of them, but delivers a surprisingly healthy daughter, Simone. The tale is full of funny moments. Stevenson’s husband, Scott, nicknames their IVF project “Science Baby.” When she is still carrying two fetuses, Stevenson jokes, “My goal was a modest one: to get 50 percent of the babies out alive.” Later, after Simone is released from the neonatal intensive care unit, Stevenson notes that the sound of crying makes her happy, not frustrated. “Baby crying? Well, that means she’s breathing!” Even though the book offers plenty of comic relief, how many parents of full-term babies will want to wade through every detail of Stevenson’s fears, drugs, and checkups? It’s the readers who are in Stevenson’s shoes who will seek out and smile at her inspiring tale of hope.”

The author, Alexa, was a blogger at Flotsam, before she was a published author.  She posts there quite frequently, and I find her style funny and refreshing. 

I could probably say I’ve got at least a mild case of PTSD (self-diagnosed) as a result of our NICU experience – the most terrifying 4 months of my life.  In time, I know I’ll get better and stop asking myself all of those pesky “what ifs?”. 

It’s a small club of which I find myself a member – the one that includes parents who at some point in time came close to losing their child, or wondering if they were going to make it to the next day.  (I don’t even attempt to truly know what it feels like to have lost a child.)  This is not a club for which anyone would volunteer.

I enjoyed this book immensely… I laughed, I cried, I commiserated.  So much of her NICU experience was uncannily similar to mine – I found myself able to relate on so many levels.  Reading her memoir was cathartic for me.  This is a book I will definitely pick up again in a few years time.

Currently, there are 28 reader reviews posted on Amazon – all but a small few rated it 5 out of 5 stars.

For any of my fellow NICU parents, both in real life and imaginary – if you’re interested in reading this book, please don't hesitate to order it... less than $6 on Amazon right now!

Kelly's Birth Story - Part 2

(You can read the first part of Kelly's Birth Story here.)


June 7th up to the run to the NICU...

I was admitted for the last time on June 7th, 2010.  I went to labor & delivery for observation due to my blood pressure being around 172/110.  The OB on call for the day, was so funny, laughing with me and said go get a new blood pressure machine, since you have an old one.  My pressures in L&D were running about 147/80.  She planned on letting me go home, UNTIL...  she came back and said your liver is acting up.  You are getting admitted.  UGH!!!

Later that night, the new OB on call came in and said, "We will be keeping you until you deliver.  Your labs are not great.  Specialist will be in to see you tomorrow."  I was like I am staying until JULY?? WTHeck.  She just smiled and left after the exam & questions.  Little did I know what the next 48 hours would be.   I asked to shower, and my OB said "Quickly, I will come and drag you out if its too long."  Well my mother was there too, so no worries & really relaxing shower on L&D, NOPE!!!

As Tuesday progressed, I was seen by my specialist again and more blood work.  I laid around bored and uncomfortable.  The baby had no desire to stay on the monitor, so the nurse's made their pay for sure with that task.  She was kicking and swimming, it was a game of cat and mouse for them.  Also NOTE: I am a HUGE Chicago Blackhawks fan, and they were in the Cup games, I had to restrain from watching games due to BP issues.

Wednesday morning rolls around.  I have been asking for water since like 6am, and no one would bring it back to me.  I guess that was a sign. The specialist came in again, and when checking, he asked what position was the baby in last ultrasound.  "Breech" I said.  His response, "Of course she is."  Another sign maybe of what was ahead?

Finally my husband came in from his night shift.  I was just getting ready to eat breakfast and we were paying bills online, when much to our surprise... In comes my doctor and specialist with the news.  "We are delivering you in an hour."  They were clearing an OR for my delivery as they spoke.

As we sat there in shock, we remembered none of our family was there.  Now they were ALWAYS around, and could we get a hold of any of them.  NO!  Finally reaching my dad and brother in-law, everyone was on the way. 


The next hour flew by with fear, sadness, and a cath that was done without my epidural because they started my mag bag, before the C-section.  UGH!!!  As I was being taken to the OR, I remember Tom leaning in and saying "don't worry I have this!"  I knew I could count on him, but I never thought he'd be in the NICU without me for 30 hours to follow her delivery.   My c-section went find, in fact they were ready to deliver her and I did not notice they had started.  I was sick from the spinal and all I can remember is them saying "dad do you have the camera?, she's here."   And then the SCREAMING AND CRYING BEGAN....."thank you, God"   I got a quick look and off with the NICU team and daddy she went. 

The rest of June 9th to be continued.....