Hand to Hold's Official Blog: Written by Parents for Parents

{Friday Feature} The Howard Family

Julie Howard with her son Spencer

My husband Andre and I met a little later in life, and after realizing our dream of being married in a castle in Scotland we immediately began trying to expand our family beyond our two furry children, retired racing greyhounds named Holly and Nova.

Fast forward a few years and several rounds of IVF later we were ecstatic to find out that it had finally worked and we were pregnant! We found out we were having a little boy, and we would just have to be patient until he arrived.

Week 16 we are having an ultrasound with Maternal Fetal Medicine (MFM) and the doc tells us that his cerebellum is smaller than normal, but it might not be an issue.  She is concerned that his head is large and his limbs are short (pssst Doc, have you looked at me?)  She decides that she is pretty certain this baby will have Down syndrome.  Also, the ventricles in his brain are larger than normal and he is diagnosed with something called Ventriculomegaly, we’ll have to keep an eye on it so it doesn’t turn into Hydrocephalus.  At this point my vocabulary is definitely expanding on the medical terminology.

We were sent to Seattle Children’s for a fetal MRI and met with a neurologist who was, and is, amazing.  You are so overwhelmed with everything, that my husband and I used our senses of humor to get through some of these times. According to the doctor, it looks like our little precious son is going to have Hydrocephalus and more than likely need a brain shunt.  The Neuro also informed me that soccer is probably not going to be his sport of choice and I may have to pick up tennis.  I hate tennis.

So our next big date would be when Spencer was born, that we would need another MRI and schedule the insertion of his shunt.  I had quite some time left before then, after all, I was only 19 weeks!  Life went on as normal, well our version of normal and when I went in at 28 weeks for my Gestational Diabetes test, I was worried that Spencer wasn’t kicking since I just drank all of that sugar water.  Luckily I had an amazing Doc who always listened, ran some tests and well poop. I have preeclampsia and must check into the hospital where I would be until hopefully he would make it full term.

Just three days later, it seems my body was shutting down to die due to HELLP syndrome and the only way to save my life was to deliver my son.  The Doc said if I had been an hour from the hospital we both would have died, but we didn’t!  Spencer arrived the day I turned 29 weeks, and I’m one of the lucky ones. They actually let me see him and give him a kiss before they rushed him off.  It was the morning of Black Friday, so I asked my OB/GYN if she would do some lipo for free for the delivery cost. No such luck.

NICU Graduation, photo courtesy Howard FamilyWe spent the next 64 days in the NICU experiencing things we never thought we would deal with.  I couldn’t find a lot of support online, and not many of my friends had been through this, so it was hard.  I reached out and made some amazing friends (who are still great friends two years later).  We discussed how hard it would have been if we hadn’t have all had each other, and all of us were looking for onesies/clothes for our little ones that were more unique.

One night, we ordered in pizza to celebrate the upcoming release of a beautiful little girl born at just 1lb even and 11″ long.  She was going home on a feeding tube, oxygen and lots of monitoring, but she was going home.  Her mom told me I needed to come up with something funny for her to wear and the idea of It’s a Preemie Thing was born.  So yes, “O2…it’s not just for old people” was made for that sweet pea!

It’s a Preemie Thing launched on Labor Day, 2010 when my son was only 9 months old, and I was back to work as a full-time Army Officer.  We decided to not only sell funny onesies and t-shirts for little ones, parents and the ones that love them, but also we also offer great support on our Facebook page as well as information for parents on our blog.

At 10 months old, Spencer was diagnosed with a rare brain malformation, Rhombencephalosynapsis (RS) and I resigned my commission to stay at home with him.  And yes, you may see Spencer, as well as the entire University of Washington RS research team sporting shirts that say “Can you say Rhombencephalosynapsis?” on the front and “Didn’t think so” on the back.  I mean come on, you have to go with the flow!

On Valentine’s Day each year, we will launch our Annual “For the Love of Preemies” giveaway, open only to families with preemies!  We have amazing gifts from some fantastic vendors, and photographers across the nation who donate their time and talent to ensure preemie families can have professional pictures made, since sometimes the large medical bills get in the way.  Not only do we now sell fun onesies/t-shirts and scrubs, we also connect parents with great organizations like Hand to Hold.  Nobody is in this alone, we just have to make sure they know that!

Julie Howard is mother to Spencer who was born at 29 weeks. She is the founder of  It’s a Preemie Thing, an online store based in Seattle, Washington  that offers preemie clothing with humorous sayings for preemies and those who love them.

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