Delays-Schmelays

Owen has had several development assessments over the last month.  Early intervention did their annual review and updated his HELP assessment.  He met with a Physical Medicine and Rehabilitation doctor for the first time.  He had a speech evaluation (PLS-5 tool) to kick off Speech Therapy.  And, on Friday he had a NICU Follow Up Appointment where they administered the Bayley assessment.

It doesn’t matter which assessment or type of health professional you ask.  Owen is developmentally at the 10-12 month-old-level.  He was born 20.5 months ago and his due date was 17 months ago (we stop correcting in April).  Clearly, his development is behind his birth date.

Many people would look at these scores and be devastated.  We are not.

We are thrilled.

The progress Owen has made since his first birthday has been amazing to watch.  At one-year-old, he was like a limp noodle.  When I held him, it was like holding a newborn, he supported none of his weight and sunk into my chest.  He could only bear weight for a second or two in his arms and legs and he could not roll over in either direction.  Owen was also, essentially, mute.  His cry was barely audible and the only other sound we ever heard from him was wheezing when he struggled to breathe.

Had we given these same assessments to him on his first birthday, by my best estimates, he’d have scored at the 0-2 months level for language, probably 2-3 month for gross motor and maybe 3-4 months for fine motor skills.

Now, put those scores into this context.  He was born 15 weeks 2 days too early and he spent a total of almost 8 months in the hospital.  Maybe even more important than those two facts was his breathing.  A typical infant respiratory rate is up to 44 breaths a minute, but after 6 months of age, most take 25-30 breaths a minute.  (Adults take 8-16 breaths a minute.)  In the first year of his life, Owen’s respiratory rate was nearly never below 50 breaths a minute and most of the time 60-70 or more breaths a minute.  Try that for a minute – a breath each second.  As you do it, try doing (let alone learning) a motor activity.  Or, try talking, or even babbling, through a breath each second.  It’s nearly impossible to do.  Owen was not physically able to do much more than breathe and it took a lot of assistance to do that.

Yes, he was born 20.5 months ago, but he did not start to develop until 7-8 months ago when he was physically healthy enough to work on development.  Do you know what that means?

In my mind, Owen is an overachiever.

He’s been developing for 7-8 months and he is at the 10-12 month-old-level.  And he’s done all that with a brain injury, crossed eyes, excessive abdominal scarring and tightness, an oxygen cord constantly in his way and lungs that can’t fully expand.

Yep, I said it: Delays-Schmelays.  My kid is a rock star.

A very busy rock star.

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He’s also exactly, what CurePity is about.  Have you signed the pledge?

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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Amazed

Do you ever just sit back and be amazed at your kids?

Their ability to smile wholeheartedly.

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Their ability to find pleasure in nature.

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Their inquisitiveness.

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Their determination.

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Their pride in their accomplishments.

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Their ability to love.

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Their peace.

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How far they have come.

Kellen and Owen birthdays

ANRC is about healing.  Part of healing is admitting that life can be hard and this blog does a lot of that.  However, the most important part of healing is knowing that hard is not the same as bad.

miracleLife is good.

 

Owen’s Birth Story

There are no two birth stories alike and I’ve recently realized that I’ve never shared Owen’s full birth story.  There were pieces very early on in the life of the blog, like here (My very first, Therapy Thursday and a post every preemie mom will relate to).  I shared Kellen’s in a Part 1 and Part 2 series and today, I want to share Owen’s.

With Owen, it’s probably best to back up to the very first weeks of pregnancy.  I had subchorionic bleeding at weeks 6, 7, 8 and 9.  Each week the bleeding was heavier and clottier and scarier than the week before.  Finally, week 10 came and the bleeding stopped.  I was still sick and the fatigue was different from with Kellen, but our anxiety lessened.

At the 20 week ultrasound everything looked perfect.  My OB and I discussed that it’d make sense to do a a Fetal fibronectin at 28 weeks.  She warned that with Kellen coming early, I was at risk for another preterm labor and I should mentally plan that bed rest was a possibility.  And I did.  Kyle thought I was crazy, but for me the nesting kicked into full gear around 22 weeks.  We took Kellen out of crib so he could get used to his big boy bed before the baby needed it and I was starting to get the house in order.  My mandate was everything had to be done by June 1 because I knew, with certainty, that this baby was coming early and I was going to be on bed rest.  My due date was August 6.

And then April 16th came.  I was exactly 24 weeks pregnant.  My dad was in town and I didn’t feel well.  I was tired and achy and found that I had mild spotting.  By mild, I mean mostly white, but a smidge of hardly pinkish discharge (sorry men who read, that, but this is a birth story).  My early weeks of pregnancy and Kellen’s early arrival had me on alarm.  What kept going through my head was that I never felt contractions with Kellen.  With him, when I arrived at the clinic I was 8 cm dilated and had no clue.  How would I know if I was in labor?  I did what every doctor tells you not to do.  I googled “2nd trimester bleeding”.  I was really quiet that night as I lay on the couch staring at my computer.  My dad finally asked if I was okay and I said, “I don’t know” and went to my room with no further explanation.  It was 10:00 and Kyle came up to go to bed.  I told him what was happening and he crawled into bed, but also said, “just call the doctor, you’ll feel better after you’ve talked to them.”

Keep in mind, it was 10:00 on a Saturday night and I was 24 weeks pregnancy.  I didn’t want the on-call doctor (it happened to be the doctor who delivered Kellen) to think I was crazy, so I gave every detail.  “I have some light spotting, really, it’s barely any, I’m really tired and don’t feel very well, my first son was born at 34 weeks and I never felt a contraction, I’m a little concerned.  My 24 week appointment is on Tuesday, do you think it’s okay if I wait or should I go in in the morning?”  I never thought I’d hear, “I’d like you go in now.  They will do a swab that tests for a protein that could indicate you are at risk of going into labor within the next 14 days.  If you test positive, there is a 15% chance that you will go into labor.  If you test negative, we are confident you will not go into labor in the next two weeks, but you will be tested every two weeks for the duration of your pregnancy.”

Obviously, I was paying attention to what he was saying because I’ve memorized the conversation, but I couldn’t get past one thing.  “You want me to go now?”  He responded, “Yes.  Going into labor at 24 weeks is rare, but with your history, we need to error on the side of caution”.

Fortunately, with my dad visiting, we didn’t need to call a sitter so late at night.  When we arrived at the hospital the nurse was waiting for us and already had her orders.  She checked my cervix and told us that I was 70-80% thinned, but I was not dilated.  She told me that her guess was my bed rest was starting immediately.  Shortly after, the fFN came back positive and we waited while the nurse was on a conference call with the OB.  I started picturing myself in my  bed at home for the next several weeks and felt horrible for myself.  My imagination couldn’t comprehend what I actually heard, “the paramedics are coming to transfer you to Riverside where they are equipped to treat your baby, if he were born now.”

I arrived at Riverside at about 2:00 in the morning and we settled into bed rest.  Kyle and Kellen visited each night for dinner.  Visitors started bringing food and things for me to do while I was in bed.  I kept working when I had time.  We had a calendar marked with our goals; 28 weeks – the point when 90% of babies will survive, 32 weeks – the point doctors said I may be able to transfer to home bed rest and 35 weeks, when I could come off bed rest.  My bed rest orders allowed me to use the bathroom and take one short shower every day.

Things were going smoothly until I got up in the middle of the night to go to the bathroom.  It was 3:30 AM, Thursday.  It wasn’t a lot, but there was bright red blood.  I called the nurses and was soon blinded by the light as two nurses and a resident filled my room.  The doctor checked my cervix and I was fully thinned and 3 cm dilated.  They started IVs and the nurse was squeezing the bags trying to get the fluids into my body faster.  I asked if I should call Kyle, and the resident said, “We’re going to try to stop your labor, but you’re scared, I don’t want you to be alone when you’re this scared.”  I called Kyle and he said he’d call his mom, who lives two hours away.  I was firm, “No.  Call Bev”  Our neighbor, Bev arrived soon and Kyle arrived at the hospital at 4:15 just after the resident checked my cervix and found that I had already reached 6 cm.  She told us that we had reached the point of no return, Owen was coming now.  They started prepping me for OR, Kellen had been an emergency c-section and the plan was for me to have another.  When we arrived in the OR, the resident checked my cervix again.  In these short 15, or less, minutes I had completed.  They could not sit me up for the epidural.  My choice was to be put under for the c-section or go try to push.  They didn’t want to put the mother of a child who they knew would be in respiratory stress under and felt it was safer to push.  Even though Kellen had gotten stuck, Owen was much smaller and likely would be able to pass.

Have I ever mentioned that I had extreme fear of labor?  I was terrified of the pain.  TERRIFIED.  Since I can remember, it was one of my biggest fears and now, I was faced with a delivery using no medication and pushing out a baby that I desperately did not want out.  I’d love to say it was beautiful and natural, but those are the last words I’d use to describe the delivery.

The Maternal Fetal Medicine specialist arrived just as we got to the laboring room and she immediately broke my water.  I really only remember two things.  One, the pain of a nurse holding the fetal monitor on my stomach.  It’s a funny thing to complain about while you’re giving birth, but it was weirdly painful.  I shoved her hand away many times, and even told her “I’d like to cut your hand off”.  The other thing I remember was when Owen crowned and they asked me if I wanted to touch him.  I refused.  I was too afraid.  Kyle touched Owen’s head.  I was proud of him for being so brave.

And then at 5:18 AM the room was silent except for the faintest little cry.  He was breathing and his APGARs were higher than Kellen’s had been…7, 8 and 8.  It gave me hope.  He was fighting the NICU staff too hard that they could not intubate him in the labor room so the NNP wrapped him up and carried him over to me for the briefest kiss.  He was so tiny, but I could already see he looked like his brother.  He was beautiful.

I didn’t get to cherish the moment for long.  He needed to get to the NICU and my doctor informed me the placenta was stuck and there was only one, very unpleasant way to get it out.  Did I mention, I was not on any pain medications?

And that, is the story of the day that my life changed forever.

More than just scars?

I mentioned yesterday that there is discussion about another possible diagnosis for Owen tied to his respiatory health.  In one way, that’s a little daunting.  He already is dealing with Severe Bronchopulmonary dysplasia, Tracheomalacia and presumed Asthma (they don’t tend to give an official asthma diagnosis without testing that requires the child to be older).  At the same time, I’m a little fascinated by the discussions because it shows what a complex, interrelated system the entire human body is.    Also, it potentially gives some answer as to why Owen is STILL on oxygen.

The theory has a lot to do with this picture (it’s not easy to look at so, I’ll give you the opportunity to scroll a little)

 

 

 

 

 

 

and this

Between major operations, drainage tubes and an Ileostomy, I can count at least 8 scars on Owen’s abdomen.  The biggest scar that goes horizontally through his midsection has been opened three times.  It was also intersected with the vertical scar going down the center of his abdomen.   This thick scar tissue makes the muscles around it very difficult for Owen to move, and we suspect, tight and uncomfortable for him to try to use.

It was in physical therapy (PT) where the extent of his scarring impacting his mobility became most clear.  It’s not very often that children can pull to standing first, crawl second and still not sit very well.  Owen’s PT at Gillette also pointed out that as soon as he gets into sitting, his respiratory rate (number of breaths per minute) increases significantly.  She then started talking about how we need to help Owen breathe better to help him with his mobility.

As soon as she said the word breathe, I said let’s start including his Pulmonolgist in these discussions.  Last week when I called Pulmonary to discuss Owen’s weight loss, I also explained that she was going to start receiving reports from PT and why.  I could hear a little excitement in her voice – she feels PT is onto something.  She then gave it a name; Restrictive Lung Disease.

I’ve only had one phone conversation on Restrictive Lung Disease, so please click the link to learn more, but it’s a pretty easy concept.  The diagnosis refers to, for any reason, the lungs not being able to expand to their full capacity.  As a result, these people tend to breathe shorter and shallower in efforts to keep up with oxygenating the blood. It’s always been known that his scars impacted his muscles and the efficiency of his breathing, but the new concept is that it’s also restricting his ability to take a full breath.

This all makes me wonder – could it be that Owen’s lung tissue is healthy enough for him to no longer need oxygen, and his restricted ability to utilize his lungs is actually why he’s still requiring cannulas?  Nobody knows for sure, but it’s a theory that’s being considered

So, what does this all mean for Owen?

  • The first step is Owen will start seeing a speech therapist to solely focus on breathing.  Breathing is the foundation of talking, so they can help with techniques that might make breathing easier for Owen.  There will also likely be some joint sessions with Speech and PT, since the skills are so connected.
  • I’m also getting trained on some massage techniques that may help loosen Owen’s scars to improve his mobility of the muscles in that area.  This process is like watching grass grow in the desert, but it’s an easy thing to do.
  • When we see Owen’s Pulmonologist next month, we will discuss further if/when Owen will have an official diagnosis and how it might change expectations and treatments.  In the meantime,  Pulmonary is going to bring Owen’s surgeon into the discussion to find out if it would ever make sense to go back in and clean up the scar tissue to give Owen more mobility (I tried not to freak out when I wrote that – didn’t really work).

I’m really excited that we have a team that is being so proactive about Owen’s total health.  It’d be easy for PT to just work around the scars – he is meeting his milestones, but instead, she’s been bringing in experts on scars, speech and will be working with Pulmonary, and potentially surgery.  There have been a couple of occasions that Katie, Owen’s PT at Gillette Children’s Specialty Healthcare, has called me in the evening to brainstorm around his scars.  I don’t know what the end result will be, but I think we are going to get some answers that will help Owen reach his highest potential.

On a week about giving thanks…Owen’s total team is about 100 people to put on the list.

Healthy Babies Are Worth The Wait

Over the last couple of months, I’ve done some volunteer writing for March of Dimes (MOD) Minnesota and have joined their Marketing Committee.  It’s an honor for me to do this work because I believe that without March of Dimes funding of important prematurity research, Owen would not be here today. For example, grantees of MOD have developed surfactant therapy, a treatment that has reduced deaths of respiratory distress syndrome by two-thirds.  In addition to research, MOD also looks to support NICU families.  The hospital that has managed all of Owen’s care, University of Minnesota Amplatz Children’s Hospital, will very soon be the second March of Dimes Family Support Site in the state of MN.  Another focus area for MOD is education.  Their current campaign, “Healthy Babies are Worth the Wait” is aimed at helping women understand the risks of electing, without medical cause, to induce before the 39th week of pregnancy.  As the mom of two preemies, I was asked what “Healthy Babies are Worth the Wait” means to me.  Here is my message to moms considering an medically unnecessary early induction.

You know that woman who says how great she felt when she was pregnant?  She also radiated joy and sunshine the whole time.   She didn’t get morning sickness or stretch marks, and somehow, she escaped waddling through her third trimester.  Does this woman actually exist?  Can she?  I’m inclined to believe that she probably just remembers her pregnancy that way and didn’t really feel that way.  I guess, I don’t really know.

I know this much for sure: that woman is not me.

I am the woman who hit the wall of nausea about fifteen minutes after conception and it proceeded well into the second trimester.  Reglan was the only reason I was able to stay out of the hospital from losing too much weight.  I was so ill that I felt it was better to tell my bosses and several co-workers, that I was pregnant at about 6 weeks because I didn’t want them to think that my extreme fatigue, calling in sick and sudden and frequent trips to the restroom were indications of me not liking, or being good at, my job.

In both of my pregnancies, I was thrilled to be having a baby, however, “sunshine” and “joy” are not words anyone would have used to describe me.  Those hormones!  I have no idea who that crazy woman was that took over my emotions, but even I didn’t like her.  Then there are all the comments about how big, or not big, you are.  Why do people think that it’s okay to discuss a woman’s weight?  Openly?  To her face?   I don’t care how pregnant a woman is.  It’s never…ever…okay to say, “Woah!  You look like you’re about to pop!”  (True story, by the way, and I was only 33 weeks.)

I could go on and on about the inconveniences of pregnancy and there are entire books dedicated to that subject, much of which is embarrassing.  I’ll just get to my point; pregnancy wasn’t exactly fun for me.  In both of my pregnancies, I did complain about how I felt.  In fact, it was right around the time of that earlier mentioned comment (from the extremely rude store clerk) that I wondered if I could possibly get 7 weeks bigger and more uncomfortable.

Unfortunately, I will never know.  I never got those last weeks.

One week later, at 34 weeks pregnant, I burst into a sob and, wide-eyed, stared down the doctor who told me my son was going to be born that day as she started explaining the risks of a premature birth.  A little more than two years later, I again, heard the risks of a premature birth.  This time, I was too numb to cry.  How do you respond when you hear your baby has less than a 50% chance of surviving and if he does live, there is an 80% chance he will have long-term issues due to being born at only 24 weeks?

Some women who have, or are, experiencing those final weeks of pregnancy tell me that I am lucky that I never had to experience those uncomfortable weeks.  I’m never sure how to respond to those women.

Are they really not able to understand the agony of your baby being born too soon?

While I know, I don’t fully understand those last weeks of pregnancy.  I do understand the alternative.  There is the silence after he is born as you wait…forever, it seems…for him to cry.  Then, there is the long, lonely wheelchair ride as you’re being discharged from the hospital while your child is still in the NICU.  As you wait for him to get healthy, you pump, and pump and pump in hopes that a machine will keep your milk supply up, because your baby is not ready to breastfeed.  You have to ask to hold your own baby…and sometimes, you’re told “no.”  There is nothing like being introduced to parenthood by being asked to help hold down your child while the nurse inserts a tube from his nose to his stomach (I said “no” by the way. You do have that right).  There are IV’s, often in the head, so the baby can’t pull it out as easily and when you hold your baby you’re fighting with the cords attached to him.  And then one day, you get out of the hospital and you dread things like weight checks and developmental screenings.  Maybe your child passes, but if he does, it’s probably with a D+.  You anxiously watch as his daycare friends and your friends’ kids learn to do everything faster than he and you wonder, “Will he always be behind?”

The scenario I just described is the scenario of my late-term preemie, Kellen.  He’s the 34 weeker who had about as smooth of a course as a 34 weeker can have.  It took about 2.5 years before I stopped noticing the differences between him and his friends.  He’s one of the lucky ones; it doesn’t seem there will be long term effects.

On the other hand, there is my very complicated course, 24 weeker, Owen.  He too, is doing amazingly well given the events of his 6 month stay in the NICU (7.5 months total hospitalized in his first year).  He started crawling at 18 months old.  A really big milestone is he has just started getting breaks from his continuous oxygen to help him breathe.  A few hours a day he gets to roam without a cord holding him back.  For eating, he’s recently had a surge, so he’s now taking 20-30% (versus the 0% two months ago) of his calories orally.  The rest of his nutrition comes through a button he had surgically placed in his stomach.  These things may not sound like much, but you would only think that if you didn’t see where we started.  Since Owen, I’m no longer afraid to hold him down for uncomfortable procedures.  Now, I actually am performing some of those procedures.  Just last night my husband held him down as I replaced the feeding tube in his stomach.

So no, I don’t understand what a 39-41 week pregnancy feels like.  I’ll admit; it looks pretty uncomfortable.  However, I so wish I did know what it was like to have a healthy baby.  From my perspective of having two babies born not healthy, I can’t imagine anything that would make me want my healthy pregnancy to end early.

Some women think, “But, I’m 37 weeks, that’s not preterm.”  My response is, “Are you really 37 weeks, or is that an estimate of your due date?  Due dates can be off by as much as two weeks.  What if you’re really only 35 weeks?  At 35 weeks, you’re likely looking at a Kellen scenario…best case.”

I can’t relate to a full term pregnancy, however, I can relate to the desire to have the absolute best for your baby.  I can also share that the emotional pain of having a baby born too soon is beyond any physical pain I can imagine.  Unlike the aches and inconveniences of pregnancy and the pain of labor, having a baby that’s born fighting to live is a hurt that you never forget.  I don’t know a preemie mom who doesn’t struggle with guilt, anger, helplessness and jealousy.  Most of all we suffer daily a deep and profound sadness that we didn’t get those last weeks of pregnancy.

Some think that a late-term preemie is not that bad.

My boys were born at different ends of the prematurity spectrum. As different as their journeys are, I can say this:  It doesn’t matter if your child is a micro preemie or late term preemie, it still hurts.  I’d give anything for an extra day, week or month(s) to either of their pregnancies.  I’d give anything for any amount of time to better their odds of living and then thriving; any amount of time to not have to take the long and lonely wheelchair ride out of the hospital while my baby waited in the NICU; any amount of time to not have to ask to hold my baby…and be told “no.”

Any amount of time to have a healthy baby.

What I really want to say to all expecting parent is this; if you’re starting to think you can’t possibly get any more uncomfortable and swollen or that your due date doesn’t work well for your calendar, I cheer you on, and plead with you to waddle through to 39 weeks!  Feel free to complain (just maybe not to a preemie mom), and pat your swollen belly, and know that this won’t be the last time parenting is uncomfortable.  Most importantly, know that it’s a miracle inside of you and that he (or she) is worth it!  Both of you, mother and child, deserve a healthy baby with the very best chances.

Please!  Please!  Healthy babies are worth the wait.

March of Dimes wants to know your thoughts on Healthy Babies are Worth the Wait.  Please join them (and me) for a Twitter chat at 12:30 CST today.  Look for #39weeksmn.  Never done a Twitter chat?  Well, neither have I.  Here is a great tutorial.  If you can’t join the chat, please leave any comments on this post.

Whether you’re joining the chat or not, please pin, tweet, post or share this great infographic that MOD created for the Healthy Babies are Worth the Wait campaign.

Also, if you haven’t signed the petition to light the White House purple on January 3 to honor the 75th anniversary of President Roosevelt founding the March of Dimes, please sign now at http://1.usa.gov/XjOakw. It’s a quick two-step process — provide your name and email, then click on the link that’s emailed back to you and sign the petition.  It’s a simple and free way to give hope for preemie families.  

And, a note of thanks to two friends who took the time to help me edit this post.  Kar and Will, I appreciate you greatly! 

 

Infographics to Share for Prematurity Awareness Month

To help share information on prematurity, I’ve been posting some infographics on Facebook, Twitter and Pinterest.  Please feel free to share with your community.

While you’re on Pinterest, check out the March of Dime’s Board.  It’s full of great information.

 

 

 

I’m planning on several more infographics.  If you’d like your child featured on one of them, please feel free to send a picture to me.  I could use 5-6 more.

Also, if you’re another blogger or preemie site that is sharing information for Prematurity Awareness…please, feel free to pimp your page!  Preemie Families Unite!