Lilypie Premature Baby tickers

Lilypie Premature Baby tickers

Tuesday, April 8, 2014

Jack Ryan's Journey - My Messy Beautiful


For the longest time, I’ve wanted to reveal my “why?” for blogging.  The Messy, Beautiful Warriors Project has given me that opportunity today. 

I never thought much about what pregnancy and child birth would be like.  I didn’t have to, because our culture, our society has already given us so many favorable expectations and so many beautiful birth stories.  We’ve all seen the amazing images of mother and child, holding each other for the first time.  And we’ve all heard that the day of a child’s birth was “The best day of my life.” But what do you do when that moment is actually one of the worst moments of your life? And not just the worst, but the most traumatic.  The most heartbreaking.  The most unexpected.   

This will never be a distant memory:  Jack Ryan, born at 28 weeks, weighing 2lb 1oz

Well, you start by beating yourself up about it.  Obviously there is something wrong with me.  Blaming yourself.  Feeling isolated and alone.  Feeling wounded.  Overwhelmed by guilt.  It’s hard not to feel that way, when instead of cuddling your newborn at home, you’re watching him fight for each breath inside a large plastic box.  It’s hard not to feel that way, when you tell someone that he was born early because you had preeclampsia and they say, “Oh, so there was nothing wrong with him then.”  Obviously implying that it was your fault.  When you are at home and you hear a newborn crying all.the.time even though your tiny 2 pound baby can’t cry because a tube is down his throat and he’s miles away in a hospital instead of at home.   Yeah, it’s hard not to feel wrong, like a failure at times like that.  Or when you instead of giving your baby a bottle or breast for nourishment, you spend Friday mornings placing a long plastic tube down their nose into their stomach so they can eat (and hoping that placement is not in the lungs which could be life-threatening).  TGIF…I don’t think so.   Broken.  Wounded.  Isolated.  Guilty.  All of these.  And more.   

What do you do?  You smile and nod when everyone says, “What a miracle.”  Meanwhile, you neglect to tell them that today your little boy turned blue while you were holding him and had to be ripped from your arms and resuscitated.  You say how grateful you are for him to be in the care of such wonderful nurses and doctors.  Yet you can’t make it past the grocery store parking lot by the hospital without having to stop your car and cry in desperation at having to leave your child with strangers.  Again.  And for the next 112 days of his life.  Or you tell everyone how wonderful it was to finally hold  your little boy, 12 days after he was born.  When what really happened is you that you were numb  inside and more than anxious to put him back in his safe isolette, afraid that he might break and absolutely afraid to love him.  And you continue to feel alone.  Isolated.  Heartbroken.  Guilty.  Wounded.

That’s what I did until I couldn’t do it anymore.  When I finally stopped feeding into the miracle.  To the expectations that are too often perpetuated about preemies and prematurity.  How they are just tiny babies who need to gain weight.  How they will catch up by age 2.  How it will all be just a distant memory a year from now.  I started talking about underdeveloped lungs and brains.  I got real about making life-altering decisions and giving drugs to a 2-pound baby that will save his life but possibly have a negative impact on his future.  I wrote about feeding struggles and lack of hunger cues and shot down the “he’ll eat when he’s hungry” advice.  I wrote about falling apart a year after everything fell apart the first time.  How it’s not a distant memory and may never be.  I shared that my preemie, my Jack Ryan, didn’t catch up by age two and neither did his parents.  And then, only then, did I start to feel less isolated.  Less alone.  Less guilty.  Less wounded.  Sharing our story – the real story – made our life less painful.   It’s still more messy, than miracle.  But it’s a lot less broken and a lot more beautiful.

Saturday, March 8, 2014

Newborn instead of NICU: The First Six Weeks

Disclaimer:  I really am fine.  If I needed help, I would ask for it and often do.  I may not have done it with Jack as often as I should have.  Lesson learned.    

Another disclaimer:  I am sleep deprived.  My aunt told me, when we brought home Jack a little over 3 years ago, that being sleep deprived makes you think differently. Maybe that’s happening now.  I can’t say for sure.  Like I said, I am sleep deprived.  

A few things happened this week.  Harper has slept 5-6 hours at night.  I think she finally noticed me and might even be trying to smile.  She had her 1-month check-up and weighs almost 10 pounds.  She is a cutie!  And then.  I watched that video of the mom who had driven her three children into the ocean; I breathed a sigh of relief as I saw all of the kids were rescued.  And then my niece pointed out, “Look at the mom.  She’s just walking around.”  And then my stomach clenched and I felt a wave of anxiety wash over me.  And then I immediately started thinking about all the judgmental commentary that would go along with video.  (No more "and then."  Hopefully you've all seen Dude, Where's My Car?)  Not that I’m condoning what she did at all.  But what led her to do it is what worries me.  “She probably told someone how she was feeling.  I bet she asked for help and didn’t get it,” I thought.  And then I’m pretty sure I said it aloud as well.   Many will say it is a flaw in our health-care system.  Mental health care isn’t well-covered, if it all.  But it made me think back to a Facebook convo I was having with my cousin this week.  I was telling her about my worries concerning Harper’s digestive system.  (Remember, my previous experience is of a kiddo with severe reflux, on 2 meds for that reflux, a special formula, and fed through a tube in his nose that I had to place every week.  Not a typical frame of reference.)  She had similar issues with her daughter (but worse) and was offering advice and even offered sleep.  Yep, she offered to give me 8hrs of sleep.  And I cried with relief at the offer, even though I may never take her up on it.  I mean, Harper sleeps 5-6 hrs.  I should be thankful and getting sleep.  But I’m not.  Not good sleep anyway.  And, yes, I know that is par for the course with a newborn.  I absolutely get it.  (We woke Jack every 3 hours until he was 10 months old to feed him with a bottle, then through the feeding tube and then held him upright for 30-45 minutes after to help him with reflux.  If I was lucky, I got 1.5 hrs of sleep between feedings.  I know exhaustion.  Mental and physical.)  But I don’t do well on little sleep.  I’ll be the first to admit it.  I don’t even like speaking to others until about 2 hours after I wake.  (Coffee has cured that some.)  But, I also know I shouldn’t complain or feel anything but happy that we don’t have that situation with Harper.   And here’s where that video comes in.  Not only is our healthcare system flawed concerning mental health, but so is our culture, our society.  If someone isn’t feeling anything but happy or pursuing happiness, then there must be something wrong with them.  I mean how many of you have heard the “enjoy every minute of it, they grow so fast!”  But what if you aren’t enjoying every minute of it?  Is there something wrong with that person?  Is there something wrong with me?  Why do I feel like it has to be all rainbow and unicorns?  Or in Jack's world, all trucks and cars?  I’ve heard too.too many stories of someone like me, revealing their feelings and being honest about their experience, only to the “but it could be worse” or “at least ______.”  I know I am guilty of saying similar things many, many times.  Why are so many uncomfortable with feelings other than happiness?  I mean, really, we were created to feel many things…anger, sadness, despair, elation, happiness, excitement….we can’t always feel the good feelings.  I don’t know about you all, but knowing about stories or experiences that our “worse” than ours (maybe a mom or child didn’t survive preeclampsia), don’t make me feel happy.  They make me feel sad, but also thankful.  You can be sad and thankful at the same time.  Or anxious and thankful at the same time.  Or even feel despair, while still feeling thankful.  In fact, I think that could describe how I felt the entire first year of Jack’s life.  When we made it to his first birthday and I finally felt like he was going to survive his battle with prematurity.

So, after reading that first paragraph (thank you!) you are probably wondering how I’m feeling right now.  I am extremely thankful.  Thankful that Harper is here and healthy.  Thankful that I survived yet another attack from preeclampsia.  But I am also anxious and putting a lot of pressure on myself to make this experience with Harper “easy”… “a breeze”… “a piece of cake” … as I have been saying to myself for weeks (or months, actually).   This should be “easy” after what we experienced with Jack.  That’s what I keep telling myself; meanwhile I have very little tolerance for anything that isn’t easy (or maybe I should say typical newborn issues)…like crying or gas pains or no napping.  I know a lot of my lack of tolerance is due to little sleep.  But as Jeff and I talked (after my afternoon of crying…I cried more than Harper), he articulated exactly what I have been feeling.  The first 2 years of Jack’s life, we used up all of our tolerance…on BIG things…like watching our child fight for his life for days that we thought would never end…or learning CPR because it was very likely that we would have to use it (thankfully, we did not…and that DOES make me happy)…waiting 112 days to bring our child home…or even now, risking my health to have another baby…I could go on. 

So what am I trying to say?  I’m not really sure.  I didn’t get a lot of sleep last night.  Haha!  But I’m hoping to tonight, because my wonderful (and sleep-deprived) husband is waking with Harper overnight.  What a guy.  This is easier, but still not easy.  And if I call it a "piece of cake," please know that I don't love cake; I typically lick off the icing and throw away the cake.  I'd prefer a brownie. When I start talking brownies, then you know Harper is sleeping 8hrs or more!  I guess what I’m trying to say is yes, I’m happy.  Yes we are fine.  Harper is great.  Jack is great, but needs a haircut.    But I’m not just happy…I’m a lot of other things and I just wish I didn’t put so much pressure on myself to get this one right and for it to be easy.  Because the first time was hard.  And I will probably always feel like I didn’t get it right for Jack (not staying pregnant, not being able to feed Jack “normally,” etc.).  I also think there’s a lot of leftover anxiety from our experience with Jack and I’m projecting it on my experience with Harper.  We spent a lot of time at home (months and months) with Jack, protecting him from illness.  We’ve spent 6 weeks at home with Harper, which is a short time in comparison, but I feel anxiety about being isolated at home for so long…and anxiety about making the decision to start taking her out for fear that she might get sick too.  (I know her health is not compromised like Jack’s, but she still doesn’t need to be exposed and develop strep or the flu or that dreaded RSV at this age).  Before she even wakes up (especially at night), I fear that she might wake sooner than last night and I’ll get even less sleep.  When she eats, I wonder if it’s enough or too much.  (With Jack, he had a “prescribed” amount he was supposed to eat each day and if we still saw a nutritionist, he’d probably still have one.)  

So, I’m still not sure what I’m trying to say…hopefully you are less confused than I.  Maybe it’s this.  One of the biggest lessons I’ve learned since having Jack (and now Harper), is that that society and it's expectations about mothering and parenthood sets a lot of us up for feeling like failures.  Like we aren’t doing it right.  As in, because Harper is sleeping so well (or eating so much or pooping the right color), that I should be only happy.  Nobody seems to be honest about what it’s really like to be pregnant (and how dangerous it can be) and to be a mother. I used to think what happened to us with Jack was so non-typical, and that made me feel even more guilty and disheartened, but since I've been open (in our blog, etc) about what it's really been like, I have felt less alone…less isolated.  So, for anyone who is considering another child after prematurity, I’m putting it out there.  Here’s what it feels like for me.  I can’t be the only one…can I? 

And I’m almost afraid to publish this.  But not that afraid.  In fact, now that I've gotten it out, maybe I will get some sleep.  'night!

I said to Jack:  "Don't you like Harper?"  He responded: "I like Harper sleeping!"

Thursday, February 13, 2014

Dear Dr. R.

I really don't know how to thank my MFM doctor for helping me navigate this somewhat tumultuous pregnancy, but I tried. 

Dear Dr. R:
     At my first OB appointment with you, I sobbed when the nurse took my blood pressure and I told you I was scared.  Scared of preeclampsia, you probably thought.  But I was scared of so much more.  Scared of another conversation about saving my life and/or my baby’s.  Scared of leaving the hospital with empty arms again.  Scared of prematurity.  And of ROP and BPD and NEC.  Scared of bringing the NICU home, with NG tubes and O2 concentrators.  Scared of having to scrub-in to see my child and get permission just to touch her cheek.  Scared of leaving my son without a mommy and my husband without a wife.  Scared that my symptoms would be ignored again.  Scared of these things…and so many more. 
     So we skipped all the formalities of the typical first appointment and instead had a little chat about taking things week by week, appointment by appointment.  And that’s exactly what we did.  While the fear never did quite leave me, I managed to feel secure in the continuity and consistency of care that you (and the rest of the team) provided.  With every quick email response, every question answered, every visit complete, I breathed a sigh of relief that we had made it through one more appointment, one more week.  And I even started to believe that maybe, just maybe, I didn’t need to be as scared as I was. 
     Every pregnant woman deserves to have the kind of care I was provided this time.  I know that the words “thank you” can never express how truly grateful I am to you for that care and compassion you showed to a somewhat traumatized pregnant mom whose heart and mind were previously scarred by preeclampsia and prematurity, but I say thank you anyway.  Thank you for allowing me to be scared and validating my fears.  Thank you for catching my symptoms.  Thank you for helping me survive this pregnancy and avoid the NICU.  Thank you for giving my son a sister and my husband a little girl.  Thank you for helping me leave the hospital, my arms filled by our sweet Harper (and her crazy hair). 

Tuesday, February 4, 2014

Family of Four

Jack said tonight, “The four of us, we are family!”  So, I guess it’s time to announce that Jack is officially a…big car carrier owner!

Just kidding…but Jack, being his typical three-year old boy self, is probably a little more excited about this new addition to his vehicle collection than he is about the new addition to his family.    Either way, I thought it important to announce that Jack is also officially a big brother to sweet little Harper Kay who arrived, safely, on Monday, January 27.  She weighed 7 pounds 4 oz and measured 19 ¾ inches.  (There’s more to her story, but tonight’s post will be short).  

After a 5-day hospital stay, we are finally settling at home and getting good at being our family of four!  Jack is slowly adjusting and has been really sweet with little sister.  My heart and brain are still out of sorts from all that comes with a new little one, but if I could succinctly express what it feels like to have another baby after a preemie…well I can’t.  But these thoughts from Khalil Gibran might help:

When you are sorrowful look again in your heart, and you shall see that in truth you are weeping for that which has been your delight.
Some of you say, "Joy is greater than sorrow," and others say "Nay, sorrow is the greater."
But I say unto you, they are inseparable.
Together they come, and when one sits alone with you at your board, remember that the other is asleep upon your bed.
Verily, you are suspended like scales between sorrow and joy.

One of the things that came to mind today, as I gazed at our little Harper girl was, “I can’t believe I made you.”  And I was immediately reminded of the thoughts I had when I first laid eyes on our tiny boy, our hero, “I can’t believe I did this to you.”    Both thoughts came from intense love for my babes…one from sorrow…one from joy.  Either way, both the sorrow and the joy…and the babes are worth it all.