RSV

RSV - three little letters that when put together cause fear for any micro preemie parent post NICU discharge.  Last RSV season, we were diligent in our efforts to protect Veronica from the potentially fatal virus.  We kept her home as much as possible.  No Mass on Sundays, no outings to the mall, we skipped our annual Christmas photo and she and I even missed a family gathering for our nephew's confirmation.  We were so diligent about hand washing, not only for ourselves but for any others who entered our home.  And the monthly, rather painful, synagis shots were an added level of security.  Not to mention the fact that she was still primarily breastfed during those months, something I know played an important factor in keeping her relatively healthy.

This year has been different.  Because of Veronica's health, she didn't qualify for a second season of  synagis shots.  Our hand washing is nowhere near what it was like last year.  And these days we try to get out as much as possible - Costco trips, Mass on Sundays, frequent playdates.  Now we have paid the price.  Last evening, after a swab to test for RSV and a chest x-ray, Veronica was diagnosed with RSV pneumonia.  We are fortunate to have avoided a hospital visit and I am hopeful the worst is behind us at this point.  But my heart dropped when the nurse told me the RSV test was positive.  I think we may have taken her health for granted, and for that I do feel terribly guilty.  We'll go back to the doctor today for a follow visit and continue with round the clock nebulizer treatments and ibuprofen.  Please say some prayers that our little girl gets well soon.

Fall 2012

Finally! An update!  Be prepared for a slew of photos.  It's been so long since I last posted I feel like I have some catching up to do.  Veronica is fabulous and completely enjoying toddlerhood.  She is such a joy to be around.  And still, after all of this time, I look at her in complete amazement.  It's clear to me that will never go away, which in many ways is a blessing.  The big news is that Veronica was officially discharged from physical therapy.  Her motor skills are exactly where they should be at this point.  The only obvious delay we see right now is in her speech.  While she clearly understands so much of what we say and do, we haven't heard the words yet.  A speech therapist recently started coming out once a month so we're hoping to see some progress over the next few weeks.  We have entered our second RSV season here in Maryland but we haven't made any plans for isolating Veronica like we did last year.  I'm hoping we don't regret that decision.  Our pediatrician made no recommendation to do so and Veronica didn't even qualify for a second season of Synagis, something I have mixed feelings about.  So it's back to lots of hand washing, hand sanitizer and prayers for an RSV free winter!   

Veronica - 18 months last month, weighing in at 22 lbs, 4oz!

First trip to Dutch Wonderland

First camping trip - Lancaster, PA

The boys roasting marshmallows (Veronica was fast asleep in the tent)

Happy 9th Birthday, Theodore!

Happy 7th Birthday, Linus!

First visit to Butler's Orchard

First hay ride.

Josephine picking out the pumpkins.

We met up with Linus who was on a field trip. 

Sebastian too.....

Our little pirate....

Enjoying the great outdoors and as happy as can be!

Neonatal Nurses Day 2012

September 15 is National Neonatal Nurses Day and I can't let this day come to a close without a shout out to all of the amazing NICU nurses out there - especially the ones at the GW NICU.  On this day last year, we were just one month out of the NICU and the experience was still so fresh.  It's been over a year now, and I still regularly think about the amazing nurses who cared for Veronica during her 17 week stay.  And the gratitude I feel towards them today, is just as strong as it was back then.  Those wonderful nurses will always hold a special place in my heart.   Thank you! 

It's Official

It's official folks, at 13-months adjusted, Veronica is a walker.  She now walks more than she crawls and I must admit, I am quite impressed by this fact.  Veronica seemed to take her time getting the rolling thing down and then the crawling thing took longer than I would have hoped.  But she just took off with the walking.  I love watching her; she is so proud and gets more confident everyday.  There is much I don't remember about the day my water broke or what the doctors said to us; but I do remember them saying that our baby might never walk.  To look back on that, and then to see where she is today, it's just another reminder of how blessed we are that Veronica is growing and thriving . 

Here is a video I took a few days ago.  She has made even more progress since then.  Go, Veronica, go!!

Back to School 2012

Our four oldest children started school this week which means for the first time in almost 7 years, I only have two kids home with me during the day.  And as I write this post, my two little girls are both napping.  Lets hope the rest of the school years has many more days like today!

Sebastian's first day of kindergarten!  

Theodore (3rd), Linus (1st) and Sebastian (k).

Trying to get a good picture of all six is next to impossible.

A little better....

Veronica and Theodore - all smiles.

Liesl (5th grade) - not exactly thrilled to be back

Josephine was sad to leave her sister and brothers behind

Two more years for Josephine and four more for Veronica.

 

One Year Ago

One year ago, Veronica came home after 119 days in the NICU.  I've already blogged about that day, not  once, but twice, so I think you can tell how I feel about that day.  I love remembering her homecoming and all of the emotions that came along with it.  I also appreciate how far Veronica has come this past year.  When she was discharged, she was on one medication (Zantac) and was bottle fed half of the time.  I can remember giving her a bottle in the middle of the night and pumping at the same time.  Not fun!  But it wasn't long before she was exclusively breastfed and medication free.  Besides the RSV isolation and regular visits from our early intervention folks, I would say for most of this past year, having Veronica home felt no different from any of our children.  Well.......maybe not.  Veronica's early beginning was never far from my mind and that I think that in and of itself, made my experience with her far different than my experience with the other five.

We made a quick trip to the NICU today and saw some of our favorite nurses.  It's always a treat to see how happy they are to see Veronica.

The Beach

Yesterday we traveled 160 miles to Bethany Beach, Delaware and spent the day playing in the water and sand.  This was the first time at the beach for Josephine and Veronica.  Despite forgetting to put sunblock on Theodore's face (ouch!), Josephine losing her Crocs to the Atlantic and the rest of us losing Linus (who was found safe and sound a short time later with a lifeguard quite a ways down the beach), the day was a success and I think all of the kids had a great time.  

Poor Josephine was knocked over by the waves shortly after we arrived
and was scared to go back in the water for the rest of the day. 

Veronica - always a happy baby

Cool Theodore

Veronica loved playing in the sand

Crawling, crawling, crawling....

Loving the waves!

Liesl and Veronica

Napping on the beach

We buried Josephine's legs

Linus and Sebastian playing in the waves