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?

Happy AND Healthy?

I went to a Parent Advisory Board at Amplatz last night.  It’s the first time that I ever pulled into the parking garage and had a hitch in my breath.  The hitch that said, “I hate this garage”.

Nothing personal about Amplatz Parking Garage.  It’s actually a brand new facility that opened a couple of weeks after Owen as born.  What I really hate is what the garage represents.  Those times when Owen was admitted when we’d wearily pull into that garage night after night after night.  230 nights worth.

That feeling of dread was palpable, but at the same time, it felt really far away.  It then occurred to me, he’s done it.  It’s been a year.  Technically, he spent a night in the hospital in October, but it was less than 24 hours so is only considered “observation” not an admittance (that’s what the Ped says, so I’m sticking with it).

I never thought it possible.  After spending 230 days of his first 53 weeks in the hospital, can it be that he has gone an entire year?

I often see or hear people say, “My son was born at X weeks and only Y pounds, but today he is a happy and healthy Z year-old”. I’ve never been able to say that.  It’s pretty hard to call a child who is oxygen dependent “healthy”.

But you know?  He’s almost there.

In his last hospital stay, Owen missed a clinic appointment with surgery for his g-tube change, so his surgeon came to the PICU to do the change and train me how to do it.  He asked “why is he here”?  I explained that it was MORE respiratory issues and the surgeon looked so confident when he said, “This will get better.”  He knew me well enough to know my look said I didn’t believe him and he looked me in the eye with the arrogance of a surgeon and said, “it will”.

And you know?  It has.  Owen has not been on oral steroids since Christmas.  Not one dose of prednisone in 2013.  Not one.  Amazing.  I actually don’t even have any in the house right now; the bottle we kept on hand has expired.

Of course, because of my battle with the jinx, this disussion has me a little on edge, but it’s important to celebrate.  Owen deserves to be celebrated for how far he has come.

Owen does still have health concerns and sees lots of specialists, but the first year of his life the focus was on keeping him alive.  The second year we got to focus less on health and more on development and look how far he’s come.

He loves saying words!

He’s walking with a walker that he just got on Tuesday (video from day 1)!

It’s kind of hard to believe that this guy

Owen, 2 Weeks old, eyes finally open

Is now this guy

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I’m still not sure I’d say Owen is Happy AND Healthy, but he’s definitely happy and getting closer and closer to healthy.

Oh, and here’s Owen’s message to the fellow two-year-olds that see him at school and say, “Look at the baby”…

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Giving Hope a Try

Can someone please tell me where the month of March went?  I look out my window and certainly don’t see spring.

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Maybe it’s because time is moving so quickly that the seasons can’t even keep up?  (Makes me feel a little less bad about not keeping up with my housework if Mother Nature can’t even keep up).

The best part about March being nearly over is that it’s the month that has scared me the most.  I know it’s silly, but last year, Owen was in the hospital for 29 days of March, therefore I had this horrible fear of repeating it this year.  I wonder how old Owen will be when I finally don’t cringe every time someone sneezes or I won’t fear certain months and days on the calendar.

The fact is, his risks are still high.  Nobody wants him sick and we still have to take precautions, but after the Pulmonary visit last week, we are starting to slowly poke our heads outside of the safety of our house.  I took the boys to a restaurant for dinner…at 3:30 PM.  Owen has started coming in with me to pick up and drop off Kellen at school.  I even talked to the doctor about Owen going to school this summer.  She said the idea makes her a little nervous too, but “Owen’s earned the right to try”.  If he is starting to need prednisone regularly or gets hospitalized, we will have to be ready to pull him, but unless we try, we’ll never know if he’s ready.

Honestly, it’s these moments of hope that make me realize just how much the last two years have effected me.  I’m terrified of hope.  It seems too many times, I’ve hoped and things haven’t turned out as I’d wanted.  My brain bashes all the hope in my heart, but somehow, my heart keeps winning.  It sounds crazy, but when I feel hope, I tear up every time.  In part, it’s tears of joy for what we continue to overcome.  At the same time, it’s tears of fear of going backwards.  Fears of another jinx hanging over our heads.

My favorite words on hope, were written by Keira Sorrells for Papa’s of Preemie’s, I Choose Hope campaign.  She says, “[for some] choosing hope is not a singular moment; it is a choice we have to make over and over again.”  I didn’t know it about myself, until I read it in Keira’s words.  Each time I have moments of my head and heart fighting over if my welling hope is appropriate or not, I think of Keira’s words.

The fears aren’t gone, but the hope in my heart gives me the permission to let him try and that’s what Owen deserves…the chance to try.

Here are a few pictures of him trying life with longer oxygen breaks.

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Was I Right?

Dear Doctors,

For me, the hardest time in Owen’s six months in the NICU was not when he was at his sickest.  During that time, I knew Owen’s outcome had nothing to do with me.  I left that to your expertise and, mostly, to Owen and God.

The hardest time for me, was when I was not heard.

When Owen’s breast milk ran out and he was switched to formula, there was an instant change in him.  He suddenly could not tolerate increases in his feeding volume.  His reflux went from nothing to very severe.  He suddenly had such extreme diaper rash that the wound nurse was called in to consult.  He became very irritable.  And then more and more and more irritable.

I kept saying.  “It’s the formula.”

“It’s the formula.”

“It’s the formula.”

And then one horrifying day I watched Owen give up.  It’s the only time in all that he’s been through where I really believed he was done fighting.  I went home that night and curled in the fetal position and sobbed to Kyle, “I saw him give up.  We have to get him home.  He’s starting to give up.  He’s never given up before.”  I’m talking about the time that he stopped breathing at the end of a feeding.  His heart rate and sats dropped.  He was about to be bagged so his stomach was emptied before bagging him.  As soon as the food was out of his stomach, he opened his eyes and started breathing on his own.

Still.  I was not heard.

Is he allergic to the formula?  “No, you replied.  This isn’t what an allergic reaction looks like”.

I think there is something about the formula.  His brother couldn’t tolerate the pre-made formula, can we try the powder kind?  “We’ve never heard of that before, plus the powder kind isn’t available here” was the dubious reply.

Should we get a GI consult.  This is really extreme.  Kellen had pretty bad reflux and this is extreme.  “No, need for a consult.  We think Owen needs a Nissen,” was your solution.

Fast forward to yesterday (my today; I can’t sleep because I’m too angry) and Owen was seen by a Gastroenterology.  Guess what?  They think he’s allergic to formula.  The reaction seems worse in (pre-made) Pediasure…maybe a preservative in it, or something, was one speculation.

It didn’t hit me until I was trying to fall asleep, but now I can’t get it out of my mind, “Oh My God, was I right?”  Could this problem have been solved all that time ago?  And then the what if’s spiral out of control.  Really, really out of control.  They aren’t even worth discussing because they are speculation.  But I can’t help but wonder, why?  Why weren’t my ideas considered then?  Why wasn’t I heard?

I know this team of doctors well and trust and respect and appreciate each and every one of you. I know you pour everything you have into your job.  I’ve seen you cry with parents, I’ve seen you go above and beyond in so many ways to save these babies, including Owen.  I know you care.  I also know that Owen’s case was multi-factorial – there were many things happening at once.  It was difficult to isolate cause and effect of each decision.  I understand that your job is complex beyond my comprehension.  I know that changing formulas probably wouldn’t have been THE silver bullet.  I know you’re great at what you do and I will never think bad of you.

But I’m still angry.

I wasn’t heard.

For weeks, I left the NICU every day exhausted because I was trying so hard to get someone to hear me; to help me make my child comfortable.

You did not consider my ideas…and now, an expert is coming up with the same idea that I had all that time ago.  The thought that maybe, just maybe, we could have, at the very least, improved Owen’s comfort (and likely his health) for the last 1.5 years makes me sick to my stomach.

Not truly.. but there are parts of me that hope this test with the hypoallergenic formula fails and that’s there is another answer because I’m not sure how to get rid of the anger I’m feeling towards people who saved my child’s life.  And the anger doesn’t stop with you.  It’s also at me.  I gave up on my ideas after I wasn’t heard.  I just accepted that “this is Owen”.  He just has really bad eczema and extreme sensitivities to any changes in the volume, rate or density to his formula and because he’s been doing it his whole life, I accepted that he cried every time he poops.  I stopped listening to my instincts.  I stopped listening so much that I was almost a little dubious today when the doctor suggested allergies.

And then, it hit me.  It makes too much sense.  There is a good chance that he’s allergic to formula.

I am so angry.

I just wish my ideas would have been considered.