Those Anniversaries

Tonight is the night.  It’s the two-year anniversary of when our journey began…or at least, when we knew it had begun.  It’s the day that I timidly made the call at 10:00 PM on a Saturday night to the on-call OBGYN because I just felt something wasn’t right.

I had spent all evening laying on the couch scouring the internet for pre-term labor symptoms.  They are kind of vague, but I supposed that I could check three of the five.

My dad was visiting.  I wasn’t being very welcoming.  But, he’s my dad and he knew something was wrong.  He was sitting at the end of the couch that I was laying on.  My feet over his lap.  I think he had been watching me for a while.  Finally, he put his hand on my foot and asked if everything was alright.  I saw the concern in his eyes.  (He’s a preemie dad, mind you.)  I knew that he felt it too.

I went upstairs, Kyle came up minutes later.  I needed someone to tell me I was crazy and that there wasn’t anything wrong.  He didn’t.  He told me to call the doctor.

I explained everything to the doctor expecting (or at least hoping) he’d be the one to tell me I was overreacting?  He didn’t.  He took it much more seriously than I ever imagined.  I was told to go to the hospital immediately.

Once at the hospital, things very quickly spiraled out of control. We all know the rest of the story, but it’s the anniversaries that are the struggle.

Overnight tonight (April 16/17) is the anniversary of my being admitted to the hospital on strict bed rest.

Sunday is the anniversary of Owen’s birth.

May 24th is the day that I’ve yet been able to write about in detail.  Kyle and I talk about it… in bits and pieces.  Last year, I could only share a picture.

June 13th…well actually, it was the next morning on the 14th, was the first time that my knees buckled and I slid down the kitchen cupboards in a sob as I learned of the surprise passing of Owen’s first best buddy.

July 11th, Owen was in the OR for six hours.  They weren’t sure he could tolerate such a long surgery, but his liver was getting very sick from being exclusively fed TPN since birth. His intestines had to be re-attached in 4 places.  Clearly, I must have, but I don’t remember breathing that entire six hours.  I was so proud of Owen that day.  Once again, he did when a lot of people wondered if he could.

July 31st, after 100 days in the NICU, Owen was finally moved to the feeder grower team.  He didn’t stay with the team for long

September 1st, broken bones.  Lots of broken bones.

September 25th, Nissen and g-tube.  The surgeon kept telling us it would be hard on Owen.  I didn’t listen.  It was incredibly hard on Owen.  It was the first time I really questioned if I was pushing Owen too hard.

October 19th.  Home

October 25th/26.  Readmitted.  Owen’s temporary g-tube stitch came lose.  He had a 10 minute operation to change him to the Mic-Key, but had to spend a night – back in his same spot in the NICU – for observation.  Surgery #7 was finally an easy one for Owen.  I slept in the recliner next to his bed that night and was woken at 6AM to the call that my grandmother passed away that morning.

These are the moments that haunt me.  The anniversaries that stretch out before me for the next seven months.  I hear it gets easier each year, but I don’t know.  Last year was hard in a different way.  Last year I was defeated because we were still in the throes of it all.  Owen celebrated his first birthday in the PICU on bi-pap with a rate (“rate” means he was being given breaths by the machine).  Really feeling the emotions of what that anniversary meant was a luxury I didn’t have time to entertain.  I was still, for a full year, in zombie mode.  Marching through what needed to be done.  Pushing the pain away, hiding it somewhere deep down.  But pain doesn’t work like that, does it.  It can’t be hidden forever.  It will always find you and for me, here it is…in the form of those anniversaries.

 

What I Wish Everyone Knew About This Preemie Life

Over the last eleven months of blogging, I have noticed a theme within many preemie bloggers’ reason for blogging.  We simply want people to better understand our journey.  For me, what I really ended up finding has been solidarity with other preemie families and a lot of healing through the process of writing and reading my thoughts in others’ writings. Those aspects of keeping a blog have been wonderful gifts and probably more healing than educating “the rest of the world”.

However, I can’t help but still wish for that original goal.  I do have some non-preemie readers, but the majority of this blog’s readers are other preemie parents.  If I had to sum it up into one list of things that I wish people knew about prematurity and being a preemie parent, these are my big ones.

Premature babies aren’t just smaller versions of full-term babies.  Premature babies are born sick.  By referring to where they stay as the “NICU” as one word, it seems that many people forget that the last three letters stand for Intensive Care Unit.  Prematurity, regardless of gestation, presents serious long and short term health and development concerns.

Every premature baby’s story is different.  Your sister’s best friend’s cousin may have had a 22 week 6 day preemie who was less than one pound at birth and is now a Rhodes Scholar and Olympic athlete…or maybe she’s “just fine now”, but that doesn’t in any way predict the outcome for any other preemie.  Preemie parents’ concerns and fears for their children’s immediate and long-term future are real.  You’re right, pondering on those concerns won’t change anything, but if you just brush the concerns under the rug, you’re not being honest, or don’t understand, the risks for children born too soon.

There is nothing magical about two.  Being born too soon is not something that is outgrown.  Medically speaking, once a child is past their due date, they are a “former preemie”.  However, that does not mean the baby has caught up and many don’t “catch up” at two, or ever.  One example is Owen, he will be two in 25 days.  He’s still on oxygen support, he does not eat, he does not walk, he does not talk, nasal congestion caused by teething requires breathing treatments.  He’s not all that unusual within the preemie world.  There are many premature children who are doing better than he and there are many that are not doing as well.  He’s not technically still a preemie, but turning two doesn’t make the impact of his premature birth go away.

Washing your hands is really easy.  I’m pretty appalled that I even have to include this point.  Just do it. It’s the most effective way to prevent the spread of illness and disease.

I am (over) sensitive.  The emotional toll of prematurity is significant for the entire family.  You may mean no harm when you complain about your last weeks of a full-term pregnancy, or use the r-word or try to tell me that I am being over-protective of my child, however, those are only reminders to me that you don’t, at all, get me or my experience.  That makes me feel lonely and sad and a whole slew of other emotions that I haven’t figured out yet.  Just like there is nothing magical in the child turning two, there isn’t some magical point when I become “okay” again either.

I’m not amazing.  I don’t deserve to be on any parenting pedestal.  Some days I’m a great mom, some days I pray that I didn’t just screw up my kids for life.  The tasks on my job description for mom may look a little different from many other’s but at the end of the day, I’m just doing what I need to do to give my kids’ their best chances.  Trust me, it’s what you would do too.

I miss you too.  Partly because of those extra tasks on the job description and partly because of my new emotional needs, I don’t get to see my friends as much now.  For those same reason, I do need to hear from you still.  Thank you for making the effort when it seems one-sided.  I like to hear about your life and not just talk about mine.  If you’re having troubles, I want to still be able to help you through them.  You may need to be more direct with your needs from me, but I am still here for you.  I value your friendship and am so thankful that you’ve stuck by me.

Other preemie parents, what would you add?  Also, I’d love to hear from non-preemie friends and families who follow this blog; what do you think are the key things you’ve learned that we preemie families might be so close to it all that we miss the lesson?

prematurity

A Changed Perspective: Parents of Preemies Day

Parents of Preemies Day?  Created by … none other than…Preemie Parents?  That’s a little…I don’t know…”pat  your own back,” much?

 

Okay, I admit it. That was my initial reaction.  When the first Parents of Preemies Day was going viral last year, I sat back and watched in skepticism   “Woo hoo, my body failed me and now my kid’s sick.  And that makes me special, how?!”  Throw in a couple expletives and that’s pretty much what I was thinking.

I know, that’s a really negative way to start a post but on a positive note, I can say this; It’s amazing what a year can do to your perspective.

Last March, just 3 days before Parents of Preemies Day, this was my personal Facebook post.

3.21 post

 

When I posted that, we were on day 21 of a 29 day hospital stay for RSV.  The only reason we went home on day 29 was because I said we were going home.  Owen was still on 2-3 liters of oxygen.  He was otherwise stable and our family could not take anymore.  At that point, I was so tired.  We were all tired.  We were inches from breaking.

Proud to be a preemie parent was the last thing I was feeling.  Tired.  Beat down.  Exhausted.  Lonely.  Like I failed.  “Kicked in the gut” were Kyle’s words.  “Ain’t No F’in Roller Coaster”  (the truth behind the name) were my words.

I was proud as proud could be of Owen.  The gravity of his situation was finally starting to sink in and I was starting to grasp how lucky we were to be where we were.   I was also proud of Kellen.  He was exhibiting trying behavior that month, but I also knew why and I could see he was trying so hard to understand.  He was really trying to put on a brave face and act like it was normal to go to the hospital, not home, to have dinner as a family.  I was proud of Kyle.  He was putting Kellen to bed each night and getting him ready for school, going to work and then leaving work at 3:00 to work from the hospital while I went home to walk the dog and put in a load of laundry and picked up Kellen from school.

I felt pride for each of them, but not for me.  Instead, I just felt tired.  And really angry with my body.  Angry that we were in the hospital…again…still.  And as you can see from my Facebook post, I felt so much guilt for complaining because I knew how lucky we were to be in that hospital.  You know…instead of the alternative.

Last March, the idea of celebrating being a Parent of Preemies didn’t fit with my frame of mind.  But as I already said, it is amazing what a year can do to your perspective. I look back over these last twelve months with so much pride.  It’s not just about how far Owen has come.  It’s about how far we have ALL come.  Our entire family has made it through some really heavy storms.  And you know what?

We.  Did NOT. Break.  There are wounds still to heal and scars that are still restrictive, but we did not break.

One of the reason’s I struggled with “pride” in being a preemie parent is that I felt (and still feel) that I was just doing what any mom would do.  I have simply done the best I could for my kids.

But here’s the thing.  Do you know that statement that, it seems, most preemie parents hear and hate…this one:

I don’t know what I would do in your situation.

Well, I do.  I do know what I would do in this situation.  I promise you I haven’t done it perfectly, but you know what?  I’ve done the best that I could and I didn’t break.  There were broken moments, but I did not break.

Every person has moments in their lives when they have to prove they will not break.  Maybe it’s fighting for our country or addiction or an accident.  Everyone has to go through something that proves they have super hero strength.

For our family and for the families of most of ANRC’s readers, the repercussions of the premature birth of our children have been those moments where breaking seemed most possible.

We didn’t break.

I didn’t and neither did you.  And if you’re still in the throes of it and wondering if maybe you will.  Trust me, you won’t.  One day, you’ll look back and be amazed by your super hero inner strength.

The fact that so many of us didn’t break and that we’ve supported each other throughout; that’s what, this year, makes me proud to be a Parent of Preemies.

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x 2!

Im a preemie mom Preemie Dad

And if you’re not a preemie parent, whatever challenge you’ve fought through, I hope you take a day to celebrate that you didn’t break.

Another?

I’m not sure why, but with both of my pregnancies I knew I was pregnant almost immediately.  Even as a first pregnancy, I emailed two of my closest friends and told them I was nearly positive I was pregnant (we hadn’t been trying, but we also were not entirely surprised) and that I still couldn’t take a pregnancy test for ten more days.  I think they thought I was crazy, but 9 days later, I broke down and took the test a day early and it very quickly confirmed my suspicion.

The heartburn, nausea, boobs and crankiness all start immediately for me.  With Kellen, I told Kyle days ahead of time and he didn’t believe me because I had to be PMSing I was so cranky (haha – he learned a lot that first pregnancy).  With Owen, he knew almost as soon as I did…apparently he recognized the possessed look in my eye.  Except for during my two pregnancies, I never felt that way any other time.

That is, until a couple of weeks ago when I woke in the morning to nauseating heartburn, tender breasts and some extra spice in my attitude.

I’ll get to the punch line quickly; I am NOT pregnant.

However, for a 24 hour period, I really wondered if it could be possible (TMI, but for the record, medically speaking, it’s not very likely).  Another baby after two preemies?  As you can imagine… emotions were shaken, not stirred.

Clearly, knowing our risks, I felt fear.  If I was pregnant, would we go through bed rest and the NICU all over again?  Or worse?  I also felt overwhelmed.  In different ways, both of my boys require a lot of time and attention.  Could I be a good mom if I had to make time for another?  I already have days that I question my ability to be okay at this mom thing (not trying for mom of the year…fed, clothed and not the school bully are my priorities).  I worried most about Kellen’s feelings and a little about Owen’s needs.  Kyle can and does do everything I can do, but I’m the one who knows his needs bests. Also, Kyle works hard and a lot of hours to provide for our family.  His job requires travel. What would happen if I was on extended bed rest?

Full on freaking out ensued.

At the same time, I also couldn’t help but feel a small tinge of hope.  Was this my opportunity to have a pregnancy end the way it should?  The kind of pregnancy that ends with a healthy baby who goes home at the same time as me.  No trekking down the flight of stairs or through the antepartum wing to see my baby.  Instead, he/she would be in the room with me.  When the boys came to visit, they could touch and hold the baby.  No lonely wheel chair ride; this time the baby would be in my arms.  We would have “Welcome Home” balloons floating overhead as my healthy, cord-free, baby was cocooned in my arms.

And I would know to appreciate the miracle of a healthy baby.  I would savor it, it’d be a dream coming true.

Could I have that?  Just once?

The truth is, I’m not hoping for another baby.  I feel our family is complete at this size and with the members in it.  However, I can’t help but wish I would have had that happy birth experience in my life.  In Grieving my 38%, I shared my grief of those weeks and months that I missed in pregnancy.  Thinking that maybe I had another chance at those days, I can’t lie, there was a glimmer of hope.  Hope that, with the right care, I could be wheeled out of the hospital with my baby in my arms.

The real meaning of RSV

Kellen had his four-year well visit today.  I asked the doctor if he thought it’d be okay for Owen and I to take Kellen into school again, and I got the, “that doesn’t make me super comfortable, ” look.

Flu is on a downward trend, but still prevalent.  RSV is prevalent and still hasn’t peaked.

Boo Hoo.  Self pity party.

I really need to stay off Facebook for a while.  I get so jealous when I see so many other preemies out living normal lives.  I’ve gotten pretty good at not comparing Owen to the general population, but I sometimes can’t help but look at other preemies who have had tough courses and do a little comparing.  I know it’s not healthy and I don’t dwell on it much, but I have my moments.   It stings a little to see them doing things developmentally that Owen’s not yet, but what really bothers me is when it feels like we are the only ones who have such a tight lockdown.

Let me lick my wounds for a moment.

Owen didn’t even get to go to his brother’s birthday party.  I’m not sure who that makes me more sad for.  Kellen’s first question when I told him he was having a pool party was if Owen would be able to go.  I know he’d love to play in the pool with his brother.  Owen would have liked it too.  He’s such a social guy and the world deserves to be warmed by his sweet smile.

Last week I even canceled a well visit for Owen because I didn’t want to take him into the germ-filled clinic.  His doctor supported the decision.

I know isolation this time of year is the best thing we can do for Owen.  We had even tighter lockdown last year and still had nearly 50 days in the hospital due to respiratory illnesses.  Most of that was RSV related.

Can I tell you how much I hate those 3 little letters?  After seeing blogger friend, Hipster Hausfrau have both of her kids admitted to the hospital for RSV over the weekend, I had enough.  It was the Hasfrau’s birthday the day they got admitted…Happy Birthday, Leda!  So, in honor of the 8 days we are 35 together, I renamed RSV.

Sometimes there is no nice way to say it.

Sometimes there is no nice way to say it.

I also have a name for flu, but I figure there were enough f-bombs slung around during the Office Space clip yesterday.  I want to keep my PG rating.

Tangential thought, wouldn’t it be great if we could go Office Space on flu and RSV?  I’d get some real enjoyment kicking the snot (literally) right out of those viruses.

So, fellow preemie moms sticking to your isolation plans.  Today, I salute you.  This sucks, but we’re in it together. I send you hugs of support and hopefully gave you a little smile today.  Need a space to vent about being stuck at home…my comment section is open.

xoxo

PS – If you’re like me and love statistics (when the math is performed by other people).  Here is the link to the CDC RSV tracker.  Click the state to find your area.

Medical Anxiety: Him and Me

Last spring, after spending almost 50 out of 90 days in the hospital, I often forced our way out before the doctors were volunteering discharge.  I also often refused the home nurse visits for follow up.  I was done.  I was in a dark place with medical workers and unless it was the Synagis nurse or Early Intervention, I didn’t want them in our house.  Seriously, a home nurse come daily to weigh Owen?  $200+ a visit?  7 days a week?  No, thank you!  I’m quite capable of weighing my child.

And that is how we became the proud owners of a high quality baby scale.  It pretty much collects dust now, but there was a long time that I weighed Owen daily to see if he needed PRN (as needed) Lasix (strong diuretic).  I keep it under our coffee table and have recently come to the realization that it’s Owen’s version of a monster under the coffee table.  He’ll be crawling around and happily playing and suddenly see the scale and start crying.  Sometimes he pushes the music button on the scale and will simultaneously cry and shake his head to the music – it’s both adorable and heartbreaking.

Why is he afraid of a scale?

Because getting weighed is the first step to all appointments medical.  He cries at the scale, screams at the stethoscope and nearly climbs the wall if you try to take his blood pressure.

Yesterday the Synagis nurse came to our house and it was the first time where he was apprehensive the minute he saw her.  He smiled at her, but it was more of a, “if I give you a nice smile, will you please not poke me?” sort of smile.  He finally warmed up to her and then she gave him his shots (big kids get two).

He screamed so hard he started retching.  I knew it would happen so didn’t feed him before she came.  Even on an empty stomach, he still retched horribly.  It didn’t last too long, but it’s also longer than the typical response to the shot.  Owen clearly has medical anxiety.

Home is always better than in the clinic.  In the clinic he hits the scale and works himself into such a fit that he finally falls asleep in my arms.  Even asleep, as soon as the door opens and the doctor or nurse walks in, he starts crying.  Mind you, not a word is spoken, just the door opening and it starts.  The exam begins and the hysterics start all over again.

A hospital stay is even worse.  I’d give some serious thought to making a deal with the devil to never have Owen admitted in the hospital again.  It’s excruciating for him and for me.  I do not exaggerate, by much, when I say it’s torture.

His fear is palpable as I try to give him a reassuring smile.

But the truth is, while it’s happening I’m thinking, “I’m putting him here.  I’m holding him down as they do these things to him.  The person he trusts most.”  (And I’d never let anyone else do it).  Even still, when it’s all over, it’s me who he clings to … a cling and searching eyes that say, “please, don’t let that ever happen again.”  His lip droops in the sweetest, saddest way.  As we leave, his eyes search with fear for what’s next and when we get to the car, he visibly releases his tension and almost immediately falls asleep.

It doesn’t matter if we are going for a routine check up where there are “no hurts” or for something more invasive.  Nearly every doctor appointment is the same.

The one exception; a physical medicine and rehabilitation appointment.  He was happy as could be, do you want to know why?  The nurse is a friend of mine.  Knowing his medical anxiety, she decided to not weigh him.

I hate that scale, too, Owen.

I’ve moved the scale from under the table.  For now, it’s under the bed in the guest room.  But one day, when I’m really sure we won’t need it again, I’m going Office Space on that thing.  Would it be inappropriate to let Owen help?

For those of you who are not Gen X’ers and don’t know the cult classic Office Space, below is a little clip.  (And if you are a Gen X’er, nod your head and smile.)  Warning:  R Rated clip for heavy use of profanity.

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.

 

Loss: My heartbreak & The Honor

In our time in the NICU with Owen, it didn’t take long for us to see that not all babies get to go home.  For the first 100 days of his life, he was in a corner spot in the nursery that was next to one of the spaces reserved for the most imminently critical patients.  Owen’s spot and this other spot were on adjacent walls, so the head of his bed and the other babies’ bed was very close to each other.  If they were both on ventilators (which was nearly always) people often had to turn side ways to walk between the equipment to get to the one side of each baby.  In other words, we were very close.

HIPAA or not, you couldn’t help but overhear bits and pieces.  On two occasions, I heard parents being told there was nothing more that could be done.  On several occasions I heard sobs as parents cried behind the curtain while holding their child that they knew was going to die.  My heart broke with each passing.

One of Owen’s roommates passed during the day while I was visiting.  I returned to Owen’s bedside after a lunch break to see him thrashing in his bed disturbed by the commotion next to him.  I instinctively picked up Owen and watched in horror as the doctors and nurses worked to save the baby next to him.  I knew I had no right to be there, but I couldn’t put my own child down until I was gently asked to leave for 30-45 minutes.  About 30 minutes later, the mother came into the family room with a resident who pointed out the phone to her.  I couldn’t let her make the call to her husband in front of a full family room.  I stood up and handed her my cell phone and told her where to go to make a private phone call.  I waited another 30-45 minutes before I went back to the nursery and waited at the door until Owen’s nurse saw me and said I could come in.  I could hear the mother’s sobs and saw nurses and the social worker come out from the curtain with tears streaming down their cheeks.  I cried as I sat with my hands on Owen’s feet and forehead.

That was Aqueem.  He lived less than 2 weeks.  His loss will forever be ingrained in my mind.  I am one of the few who had the honor of knowing him.  Aqueem was the smallest baby I had personally seen in the NICU; just 400 grams.  Whenever I hear of survivors of his size, I always think of him.

There was also Britta.  She was born on the same day as Owen, the Thursday before Easter.  Britta was full term and, I’ve since learned, was born with minimal brain activity.  When we came in on Easter Sunday, she had the cutest floral Easter dress.  Beautiful Britta with the chubbiest cheeks and blonde hair is who I think of whenever I see a baby in a floral dress.  I saw her mom last night at a Amplatz parent advisory board meeting.  She joined the board as a way to keep Britta’s memory alive.  I’m honored to also be able to do that, even if it’s in a much smaller way.

There was also Louis.  One of Lou’s sister was actually in that critical bed until Owen got so sick they had to move her to perform his surgery.  Lou was on the other side of Owen.  He was Owen’s first best friend.  The nurses and I joked that they had a little game called, “let’s see who can set off the alarms more”.  Louie’s heart rate would dip and then Owen’s would follow.  Owen’s blood pressure would go low and Lou’s would go high.  They were next to each other, but often couldn’t share a nurse – these two guys like to keep people on their toes.  I think of Lou every day.  I hope his parents and surviving sister (they were triplets) don’t mind sharing him with us, but I think of Lou as Owen’s guardian angel helping push him to keep working, just like the games they played in the NICU.  I was honored to be one of the few who knew Lou and to help keep his memory alive.  I wish I would have known his sister, Brooke, who passed away before they were transferred to Amplatz.  But, I know of her and through Lou will also keep her memory alive.

Wyatt was not a roommate of Owen’s, but his mom is my friend.  We got to know each other in the NICU when we were #2 and 3 and then #1 and 2 for oldest babies in the NICU.  Wyatt was born April 10, 2011.  He died November 22, 2011.  Many things remind me of Wyatt.  He’s who I walk for in the March of Dime’s March for Babies.  I think of him on the 10th and the 22nd of each month but mostly, I think of him every night when I see the moon.  His mom has always felt a connection between Wyatt and the moon and since she’s shared her story, I do too.  My iPhone has several pictures of the moon that I take on nights that it’s especially beautiful.  As I scroll through my pictures of my boys, I have small reminders of Wyatt.  I had the honor of knowing Wyatt and I will keep his memory alive.

There were many other babies that were lost whose memory I also will keep alive.  I may not have known them as closely as these four, but every baby’s life deserves to be remembered.

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

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Forward Progress Only, Please

Maybe we jinxed ourselves by being part of a news report on how good he was doing?

Maybe it’s teething?  It’s true, teething can cause regression in other development areas.

Maybe, as was suggested by his doctor today, it’s because of all the gross motor development he’s been doing?

Maybe he was getting bored with the limited varieties of food his allergies allow him to eat.

Maybe he’s not as hungry after we went up on his formula calories?

I don’t know, what’s caused it, but I’m guessing you have already figured out Owen’s not doing so well with eating lately.  Actually, it’s pretty much been since Thanksgiving.  He was orally eating 300-400 calories a day, but now, he’s getting 50-70 on a good day.

We still sit three times a day, but most days he only eats one of the three.  I keep repeating to him (and myself) “I will not give up.  I will not give up.  I will not give up.”

We keep trying new foods.  Pickles, watermelon, apples dipped in caramel, carrots dipped in ranch dressing (allergy note, most ranch dressing brands have eggs), beef jerky, fruit leather.  He even gets Noosa Yoghurt where the frivolous use of the ‘h’ stands for “heck of a lot of money”.  That ‘h’ may also stand for “holy smokes, this is delicious”.  Of the luxury yogHurt, Owen will take a few bites of it, but it’s still not large amounts.

I try to keep focusing on the fact that he is still leaps and bounds ahead of where he was this summer when he wouldn’t swallow.  If I can get the spoon in his mouth before he slaps my hand away, he does swallow it.  He’s continuing to sample new textures and flavors, even if he’s not eating, he does explore foods most of the times that we sit to eat.  Also, each session at the table is great for his fine and gross motor skills.  He’s starting to throw food (not one of my favorite milestones), he’s really got that gravity concept and pincer grasp down.  He pinches food with his thumb and index finger and releases it to the floor with a smile (some milestones are much more exciting to this mom than others) and he’s communicating wonderfully when I say, “Owen do you want to eat?” and he shakes his head emphatically “no” (excuse the mellow drama, but… “just stab me in the heart, Owen”).

Just behind, “I will not give up.  I will not give up.  I will not give up” is “Thank God for g-tubes, Thank God for g-tubes, Thank God for g-tubes”.

I’d been warned by many that this would likely happen several times in his learning to eat.  I do realize that learning is not linear.  I can rationalize it to death.

Truth is, going backwards stinks.  But Owen won’t hear it from me.  “I will not give up.  I will not give up.  I will not give up…..”