Preemie Premonitions

I was standing in front of a room full of people, presenting my latest project at work.  I was wearing tan pants and I looked down to see bright red blood soaking through them.  I tried to turn my body, hoped that no one saw it and continued on.  As quickly as I could, without being obvious, I finished up and sat down in the back of the room as the meeting adjourned.  Sitting back on my tail bone, not wanting any more blood to soak through.  I was supposed to meet with a small team next, so I wrote to the organizer who was sitting next to me.

I can’t meet.  I have to go home.

 

She knew me pretty well – considering I’d only been at the company a couple of months.  She whispered back to me, asking what was wrong.  I tried to not respond, but she was insistent.  Finally, I wrote again.

I am pregnant and I’m bleeding.  A lot.

 

I could tell she instantly regretted asking.  I sat in the meeting, watching the final minutes of the meeting.  As soon as the meeting was out, I positioned my notebook in front of my waist and rushed to the bathroom.  This was the third week in a row that I’d had bleeding.  I was 7 weeks pregnant and had already had two ultrasounds.  I knew something wasn’t right with this pregnancy.  As I observed the amount of blood and saw how much worse it was than the previous weeks, I tried to keep myself pulled together.  Untucking my shirt to cover my pants, and finding a pad to keep it from getting too much worse, I rushed to my desk and put on my coat.  My boss already knew I was pregnant, because I had to explain my pasts absences the two weeks prior.  I just simply said, “I need to go.”  He asked if I needed a ride.  I said no and was off.

I had already been to the doctor twice, so I knew the drill.  If I was miscarrying, they wouldn’t be able to stop it, so there was no point in going to the ER.  I went home and cried all night.  Kyle came home and held me.  I was positive there was no way I could still be pregnant with all the blood I was still losing.     I finally fell into a deep sleep, fatigued from all the crying.

As I slept, I dreamed in techno color.  In the dream, I was holding Kellen and we looked down at a baby.  A boy.  He was nearly bald, with fine golden hair, I couldn’t tell if it was red or blonde.  He looked much like Kellen had, but different.  His head shape was slightly different and there was something else.  I couldn’t put my finger on it – the baby was so still.  Something wasn’t right.  I had always felt he would come early, with the dream I knew he would…earlier than Kellen.

More than anything, I knew I was still pregnant.  I like to think I’m a rationale person and that a dream is just a dream, but I knew that dream meant something.  I was giddy on my way to the ultrasound the next morning.  I think Kyle thought I was crazy to be in such a good mood after being so certain I’d miscarried less than 8 hours before.  I nearly sang the words, “I’m still pregnant.  It’s a boy and I saw him!”  and I proceeded to describe the future Owen to Kyle.

As happy as it made me in the moment, that dream haunted me for the next 17 weeks of my pregnancy.  There was something wrong.  What was wrong?  I kept replaying the dream in my head, watching him to see if he was breathing.  I knew he would be born, but I wasn’t really sure if he was alive.

Only a few months later, I stood over Owen’s NICU bed with Kellen in my arms and I realized I was living the moment my dream predicted.  The dream left out the ventilator and myriad of cords, but there lay a very still baby Owen while I faked calm for Kellen – searching for signs to see if he’d live.

I’m not sure of the purpose of that dream; if it was a warning or a way for my brain to start working on the unimaginable events to come, or just an odd coincidence, but it seems I’m not alone.  I’ve heard of so many others who had premonitions…did you?  What did the premonition mean to you and how do you think doctors and patients should differentiate between normal pregnancy jitters and true intuition?

Each Parent Has His/Her Own Course Too

I’ve met several families who have had preemies with similarities to Owen’s course.  But I’ve never heard of a story exactly like his.  That’s not because Owen is some sort of special case, it’s because EVERY preemie is a special case.

There are no two preemies exactly alike.  The course of Ailyn does not predict Virginia or Charlie’s.  The course of Jack does not predict Owen’s or V’s or Boy Boo’s or Tucker H’s.  Not even twins, like Destroy & Search or T & K, who have the same parents and same length of time in the womb have the same course.

The same is also true for any type of special needs.  Kerry’s Cerebral Palsy is likely different from Max’s Cerebral Palsy.  Girl Boo’s undiagnosed special needs don’t look like Tucker C’s who has a kind of sort, maybe, not quite exactly, but a lot like diagnosis.

I know you know that every child – special or typical needs – has his/her own course.  It’s not always easy for us as parents, but as a whole, I feel like this community really does a great job of giving our kids permission to end up in different places.

Where I would argue we don’t give that same permission is with ourselves.

It’s an interesting perspective being a blogger who is really open with her emotions through all of this.  After two and a half years, our family is finally settling into some sort of groove.  We are forever changed, but we are getting to a place that is more about moving forward and hope and  joy and less about living in constant fear and simply thinking it’s a good day when all the meds and feedings were on time all while trying to figure why/how could this happen?.

Some families are wondering what took us so long to get here.  Others are wondering how we could be here so soon.  Just like our kids’ course and outcomes differ, the parent course and outcomes differ.   And it doesn’t have anything to do with the course of the child.  My husband, Kyle, and I have completely different perspectives on much of what happened.  We have the same two preemie children and each experience effected each of us differently.

Just because I went back and toured the NICU, doesn’t mean that I think everyone should.  In fact, my husband would probably rather do just about anything than to step foot beyond those doors again.  Just because I choose to believe that there wasn’t a reason for any of this happening and that it’s just what happened.  Doesn’t mean I don’t respect people who do feel this was part of God’s plan.  Just because writing a blog that details every negative and positive feeling I have had on this journey works for me, doesn’t mean it’ll work for everyone…notice, I don’t talk much about Kyle on this blog?  He knows it’s what I need and he respects that.  I know he wants to keep his path private and I respect that.  Same kids, same courses.  Different outcomes.  Both outcomes are okay.

Maybe I’m over thinking it, but I’ve received a few comments and private messages lately that made me think that my sharing where I am, made others feel bad about where they are.  No one has come across as angry at me for sharing what I’ve felt, but it has seemed a few times, they have been angry at themselves for not being in the same place that I am.  If you fall into that camp; I am sorry.  It is never my intention to make someone feel bad (unless you gave me crap about being asked to wash your hands in my home).  I do not think that my thoughts and experiences represent everyone.  I’m only sharing because 1) I have this inner need to share this experience.  I know no other way to try to make sense of it all  2)  I still find the time to share because if every once in a while it makes other people feel better about their own experience, it’s worth the effort.

Most of the readers of this blog are preemie or special needs families.  We are all brought together by what we have in common – beautiful kids that didn’t have the expected course.  I love having this group for that support and also want to remind everyone that your perspective is not the same as mine, or each others on every point.  That’s okay.  We can still join together to remember those who had much too short of courses, encourage those still on an unexpected course and support each other as we heal.

Just like our kids,we parents have our own course too.

PS – check out all the links to see more inspiring preemie and special needs stories.

A Preemie is NOT A Preemie

I believe every preemie story is unique.

I believe that anytime your child is in the hospital, it is hard, lonely, frustrating, scary and sad.

I believe my letter to new preemie parents is valid regardless of the course the individual baby has.

I believe the data that proves any child born before 39 weeks is at a greater risk of short and long-term health and developmental issues.

I believe that the emotional toll for all preemie parents is significant, valid and, for many, life long.

And, whenever I see this statement; “36 weeks or 23 weeks, a preemie is a preemie” I feel like someone wearing 6 inch stilettos is kicking me in the gut.  Honestly, just typing those bolded letters bring tears to my eyes.  It makes me feel lonely and like I should discount some of the harder parts of my experience.

There are many shared experiences within a NICU stay.  The fear when you find out the baby is arriving early.  The loneliness of not having the baby in the room with you, instead you have to walk through the halls (often seeing other mothers with their healthy babies) to see your child in the NICU.  You have to ask to hold your child, there are cords and strange machines, IVs, frequent blood draws, feeding tubes.  You’re discharged from the hospital and your baby stays on.  It’s not the experience any parent can prepare themselves for and it’s devastating   There is guilt and anger and hurt and sadness.  No matter the length of the pregnancy, when your child is born sick, all of this is true.

At the same time, some preemies have additional complications that can add further layers to that hurt.

When you’ve been in the NICU a certain point of time and all the babies who were born at the same time as yours, or after yours – at the same gestation who were also really sick – have been home for weeks or months and you’re still going to the hospital every day.  You are still wondering if you will ever bring your baby home.  That is another layer of hurt.

When you have pictures like this with your child.  Pictures that were taken because you realize these may be your last moments with him.  As you walk through the NICU halls and feel the looks of pity from the staff, because you know, they don’t think he’s going to live.  When the Social Worker and Chaplain stop by, not just to say hi, but because the doctors have called to let them know there is imminent concern for your child.  That is another layer of hurt.

Owen and Tatum shortly before Owen's emergency bowel surgery, May 24, 2011

Owen and Tatum shortly before Owen’s emergency bowel surgery, May 24, 2011

When it slowly sinks in that you’re not just a preemie parent, you’re also a special needs parent.  That your child isn’t “just” not going to get “normal” at birth and infancy, he’s probably never going to get “normal”.  That is another layer of hurt.

I don’t say this as competition.  Competition, according to Merriam Webster, insinuates a rivalry.  I believe the preemie community needs to unite and support each other because there are so many ways that we hurt alike.  I would never discount the hurt that someone is feeling because they haven’t had as many complications as we have dealt with.  At the same time, I would never discount the other layers of hurt that some had that we did not.  I will not compete, but I do hope for perspective and support.  Perspective.  Not competition.

I recently had lunch with a NICU friend whose son died after 7.5 months in the NICU.  She’s been very open that it’s important to her to maintain relationships with her NICU friends because she is still not “over” the NICU experience.  She knows that other NICU and preemie moms understand part of her experience that the rest of her world does not understand.  I cannot begin to understand the layers and layers of hurt of losing a child.  It’s clear to me and to her, that some of our hurts are different.  But, because we also share many of the same hurts, we still depend on each other in our support systems.  Our journey and our perspectives are different.  Both perspectives are valid and honest and true and much too real.  Each perspective hurts, but the hurt is not all the same.

I don’t care what gestation your child was born.  If you didn’t get what you expected; that hurt.  Your hurt is valid.  I want to support those layers of hurt; each layer of hurt.  I hope you also want to support each of my layers of hurt.

Does that make sense?  I am not a proponent of competing on who has it worse.  I agree, that’s a ridiculous and very unhealthy notion.  However, I can’t discount parts of my experiences or anyone else’s experience because they didn’t happen to everyone else.  Whenever I hear, “…a preemie is a preemie” I feel like I’m expected to forget those layers.  I won’t forget and I need help getting through those layers.  I don’t want to ignore them.

Each story is valid and, in its entirety, deserves each other’s support.

Feeding Disorder versus Picky Eater

A lot of people, myself included, have a really hard time understanding Owen’s feeding issues. Just before sitting down to write this post, I was catching up on Pinterest and salivating at all the delicious pictures a friend was posting. It’s hard for me to fathom that seeing food does not trigger a hunger response in Owen. Not only does the image of food not do it for him, neither do hours and hours of an empty stomach. If hunger registers in Owen’s brain, I’ve not seen him express it through a behavior change.

There are often two responses that people have regarding Owen’s eating.

  1. When he’s hungry enough, he’ll eat OR
  2. He’s just picky (or stubborn)

In fact, those two statements describe picky eaters. Picky eaters will eat take in adequate nutrition and continue to thrive while being selective with their food choices. In general, picky eaters will not tire of their favorite food choices and can learn to broaden their selections.

What Owen has is a feeding disorder. Feeding disorders, not to be confused with an eating disorder (anorexia or bulimia), is a term used to describe children who have difficulty consuming adequate nutrition by mouth. Feeding disorders can be very severe leading to failure to thrive, chronic illness and, in the most severe cases, death. Even when hungry, Children with feeding disorders may not consume enough to thrive.

According to this, often sited, 2000 paper for Journal of Clinical Gastroenterology, by Manikam, Ramasamy Ph.D.; Perman, Jay A. M.D., feeding disorders are, in fact, very prevalent As many as 25% of children have some degree of a feeding disorder. When you just count those who are developmentally delayed the number jumps to 80%!

Feeding disorders are multifaceted and often include medical, behavioral, psychological and environmental aspects. They can be found in healthy children, but the healthy cases are more likely to be temporary and environmental in nature. More frequently, and often more severely, feeding disorders are found in children with digestive disorders or those with special needs.

I really like the way this Journal of Pediatric Psychology article from 2007 breaks eating disorders into three, easy to understand categories; tube dependent, liquid dependent and food selective. Clearly as a parent who makes a conscious effort to not be stressed about Owen’s eating (or lack of), I was interested to see that, according to this study, intensive (extended in-patient, multidisciplinary treatment) has the best outcomes and the least stress for parents.

Honestly, Owen’s feeding disorder, is one of my biggest forms of stress in his care. While, I wouldn’t wish any type of disorder on him, physical and cognitive disabilities are easier for the rest of the world to accept. Eating and enjoying food is often the backbone of culture. I want for my son to be able to participate in his environment with food, and I do believe he can and will. However, getting there is really frustrating – especially when you add in his wheat, egg and peanut allergies. I basically am throwing darts blind folded looking for foods he will eat and then when we find one, he eats only that for a while and then gets sick of it, or starts teething or has some other disruption and then we start all over. It is costly and is very, very time-consuming and in reality, all the work may just be a band-aid to get us to the point when he’s ready for an inpatient program.

So, please, when you look at Owen, don’t think he’s being picky or stubborn. While not a perfect comparison, nobody would ever say Owen is still on oxygen because he’s too stubborn to breathe without support. We all understand that his multiple lung and airway disorders are working together making it difficult for him to fully wean from oxygen. His eating is similar, this is a medical disorder that involves many facets of his development. Just like he will one day be off oxygen, I know he’ll one day be done with his feeding tube. But it does take time. Sometimes seemingly excruciating amounts of time.

In the meantime, we keep working on it. Here he is checking out a strawberry, with a little apprehension.

Click to Pin on Pinterest

Click to Pin on Pinterest

The beauty of a smile

I think about this post every day.  Each time I look at either of my boys and their smiles I’m awwed.  Not by what they have overcome, but HOW they have overcome it.  I know they aren’t alone.  Between Facebook and ANRC connections, I’ve seen so many pictures of preemies.  There is something magical about these babies.  It’s as if they already know that life is to be cherished and enjoyed no matter how hard it’s been.

For me, the most difficult thing I have been through is watching my children struggle.  With Kellen it was waiting … for what felt like an eternity… to hear him cry after he was born. For Owen, it was the entire first year of backward step after backward step – constantly fighting to live.  For many readers of ANRC, watching your child struggle with prematurity and/or special needs have also been your biggest challenges.  However, even if prematurity hasn’t directly affected you, I’m sure you’ve had your own life struggles; maybe you’ve lost a loved one, had a car accident, filed for bankruptcy, got divorced, were abused, lost a job, fought a life threatening illness or on and on and on.  We have ALL struggled in life.

It doesn’t matter what the struggle, we can learn so much from these tiny warriors who were born fighting for their lives.  For each, there is a story of hope, perseverance, over coming all odds and unconditional love.  And then, there are the smiles.  There is no better reminder to smile than to look at the pictures of former preemies growing up and being their amazing selves.

Whatever your struggle is today, here are several reminders that there is hope, so don’t stop smiling.

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Haircut with blue streaks

 

Special thanks to all the families who shared their child’s picture.

 

A letter from Preemie Families

Dear Friends and Family,

Truth is, it makes me really uncomfortable to ask you to wash your hands when you enter the house.  I hate that I have to ask if you have had your flu shot and are up to date on your TDaP (pertussis) vaccination.  I am just as upset that I have to cancel at the last minute because someone in your family, or our family, has the sniffles.  Actually, because we have limited exposure with the outside world, I’m probably even more disappointed to miss your company.

The last thing I want is for you to feel unwelcome in our home or in any way put out because I notice when you sneeze into your hand and then try to touch my son’s hand.  And do you know what?  In most cases, I agree with you when you say that colds are just a normal part of life.  I know you think I’m paranoid.  I understand that it’s embarrassing to be asked about your hygiene. I know your suggestions about immunity building are well-meaning.

I also must tell you, I hear your exasperated sighs and see your all-knowing eye-rolls at my requests.  When you respond begrudgingly, my embarrassment dissipates and is replaced with anger.  It makes me really angry that you could put your pride in your cleanliness and healthfulness over the life of this child.

what a medically fragile child looks like

You see, Owen is doing remarkably well and has overcome so much in his 20 months of life.  He is so much better than six months or a year ago, but the fact is, he is still a medically fragile child.

This week there have been so many top news stories about the thousands of Americans in the hospital right now due to the Flu.  In Minnesota, one healthy teen has died and another is struggling to live.  As a parent who has watched my child fight to live, my heart breaks for the parents of these children.

At the same time, I am alarmed for my family.

You’ve asked in the past how you can help our family.  The biggest way you can help is this:

  1. When we make plans to see each other, volunteer that you received your flu shot more than two weeks ago.
  2. When you arrive at my house, greet me and the baby and say, “I can’t wait to hold you, as soon as I get my hands washed”.

That’s it.  Those two simple steps will make me feel more support than any other gift you can give.

Maybe, like some say, “paranoid” is the correct word, but really, I don’t care.  I’m just trying to do the best I can for my son.  He won’t always be medically fragile, and while he is, I hope you’ll bear with my requests and support and respect my best efforts to love and care for this child who we all want to see succeed.

Thank you for your understanding, and sticking by our family during this difficult time.

Sincerely,

A Preemie Family

Picture14

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Posts of 2012 Every Preemie Parent Should Read

It seemed 2012 was a year of solidarity within the Preemie social media community.  Life after NICU and Papas of Preemies launched late in 2011 and early in 2012, several private Facebook groups started, there was the first Parents of Preemie Day in the spring and the first annual World Prematurity Day was in November 2011 and grew exponentially in 2012.

Having the support of a community has been a key element to getting through life with a preemie – especially during cold and flu season lock down.  Here is a collection of some of the 2012 posts from around the community that I’d recommend to any preemie parent or friend/family of a preemie family.

Posts to read when you are a new preemie parent:

Dear New NICU Mom by Lindsay Franks for Life with Jack

Dear New Preemie Parent by Tatum Marinkovich for Ain’t No Roller Coaster

A Letter to Me by Joel Brens for Papas of Preemies

Posts to read when you need to hear someone say the right thing:

How to Talk to a SN Parent by Marty Barnes for Papas of Preemies

What to Say (when a parent loses a child) by Jana Kimmel for Keeping up with the Kimmels

Post to read when you need a reality check:

Catch up by 2? by Jessi Bennion for Life with Jack

Post to read when words hurt:

The R Word by Amanda Knickerbocker for Understanding Prematurity

Post to read when there is an older sibling:

The Therapy Fund Vol. 6 by Melissa Harris for The Tales of the Anti-Preemie

“I am Preemie Parent, hear me roar” post:

“Get over it,” “Just Fine,” “Normal” by Tatum Marinkovich for Ain’t No Roller Coaster

Post to read over and over and over again:

1st Corinthians for Moms written by Katie Loveland for Life with Jack

What preemie posts helped you most in 2012?

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Click Image to Pin on Pinterest

editors note:  I had mistakenly used the wrong last name for Melissa from Tales of the Anti-Preemie.  The post has been corrected to reflect her correct last name.  My sincerest apologies Melissa!