Happy March!

Happy March!

Wow! March is already here...this year is flying by. Only a few more months until our family gets a little bigger. We have been as busy as ever with the end of hockey season, a move into a bigger town house, and getting ready for baby, on top of all of our regular activities.

March for Babies 2012 Kick-Off breakfast.

This morning I had the privilege of being the MC at the annual March for Babies kick-off breakfast. This is the second year I have been invited to the breakfast. This year's walk is in April and the goal is to raise $515,000 regionally. Jason and I haven't walked yet, but hope to be out there this year! Project: Cameron's story has put together a team of walkers and since we have become involved with the annual book drive...it just seems appropriate to walk with their team!

Oh and speaking of the book drive....the totals are in and we surpassed the goal of 2400 books. This year Project: Cameron's story will donate 2,456 books to local NICU's. Yay!

Covered in stickers...and loving it!

Finally, I am so happy to report that Ella is doing great. She has just grown leaps and bounds since she is feeling better. She is definitely growing out of all her clothes and shoes. Her vocabulary...and personality is growing too. She is a pretty funny little girl. I love hearing her talk and TELL me what she wants now. The challenge is just working on having a little patience (for both of us!).

As I continue to be amazed every day by the accomplishments Ella has made, I have also found myself thinking just as much about what her sister will be like....who she will look like, what her personality will be, how will Ella react?? Will I celebrate the new babies every moment as much as I have all of Ella's "firsts"? Just three months left until the big day! We can't wait....now if we could just agree on a name ;-)

Books For Babies

For the second year in a row, Jason and I have helped a local organization collect books for babies. We learned about Project: Cameron's Story two years ago after a news story I had done. A local mom started the foundation in memory of her son who was born very premature. Cameron spent more than 200 days in the NICU and at times his parents couldn't hold him. They turned to reading as a way to bond. After Cameron passed away, the family wanted a way to help other families in similar situations. Now they collect more than 2400 books every year to donate to our local hospitals. The goal is to make sure that EVERY baby admitted to the Neonatal Intensive Care Unit (NICU) has a brand new book.


Here's a shot of some of the books
we collected at the game.


I felt a bond with this mom as soon as I heard her story and knew instantly that Project: Cameron's Story was something I had to get involved with. Cameron and Ella were in the NICU at the same time. Although we never met during that time, there is connection that every parent that goes through this experience can relate too. It is a scary time and a situation no one ever expects or wants to be in. I know how important reading was for us while Ella was in the NICU. Jason would sit for hours next to Ella's isolate, reading her stories. They still share this special connection!


Jason reading to Ella in the Nicu...June 2009

 Every February, Cameron's story holds a book drive for one week...collecting new children's books at businesses and offices around the area. This year, Union's hockey team was kind enough to help us promote a big book drive at a game. We ran promos on News 10, the team emailed season ticket holders, blasted the event on the radio and hopefully really helped bring a lot of attention to the cause.

Sara Quartiers, the founder of PCS being
interviewed by News 10.

We collected lots of books (more than 2 big boxes). The Quartiers family (founders of Project: Cameron's Story) came out to the game to watch Union beat Princeton. It was a great night. Jason and I are so happy to be able to take part in this year after year and I look forward to a time when Ella is old enough to understand and be more involved herself.

I'll have an update soon on the total numbers for this year's bookraiser!

Crazy Busy!

I think this is the longest I have gone with a gap in my blogging. We have been crazy busy! The days are just flying by. It's hard to believe that we are nearing the end of October. In just the past week alone, we've had a trip to the pediatrician, a visit to the ER, meet the teacher night, and a check-up with the developmental pediatrician!

Ella is doing great and proved once again that she is amazing. The developmental pediatrician sees her every six months. He was very impressed with how much strength she has gained and how much more active she is. The last time Dr. Malone saw Ella was February. She wasn't walking or crawling then. She had really just gotten used to the Synthroid (thyroid meds) and hadn't even started the growth hormone. Dr. Malone was the one who really urged us to consider growth hormone. He has seen tremendous results and really felt this would help in Ella's situation. I am soooo glad we took his advice.

Dr. Malone did suggest that we increase Ella's time at school. He thinks she would really benefit from a consistent schedule. We decided to add another day of Toddler group. Ella will love this. At meet the teacher night, she was so excited to show me all the fun things in her classroom. Her teachers were great. They say Ella is a rule follower and doesn't really like when the other kids step out of line! She is also warming up to the other kids a little more too. They say she doesn't like when others invade her space! This will be great practice for pre-school next year. We already registered her in the Rensselaer School District. Time is flying!

Happy Girl! This is the day we registered with
the Rensselaer School District.

Now you're probably wondering about our trip to the ER! Last week, I noticed a rash on Ella and was immediately concerned about MRSA. She contracted MRSA (a staph infection that is resistant to many medications) when she was just a few days old in the NICU. At the time, my little newborn looked like she had chicken pocks all over her body. She was treated with IV antibiotics and the rash eventually cleared up. We had another bout with the "super bug" (as it is commonly known) when she was six months old and we discovered her belly button wasn't healing because of another MRSA infection. This is something she will likely always test positive for and it's hard to understand how she even gets the infection in the first place. The good news is we have found a medication that works to clear up the infection. This time, she had a pretty big sore and the pediatrician wasted no time prescribing the strong meds to clear it up quickly. For some reason, the sore got much worse and by Saturday morning it was almost the size of a nickel and very clearly infected. I took her to the ER, where they drained it. It was a painful procedure since they only used a little numbing cream. Ella was great through the entire thing. A few M+M's right after they were done also seemed to help wash away her tears. Here we are almost a week later and the MRSA seems to be just about gone. Her cut where the soar was is healing nicely. The whole event was much harder on me than Ella I think. She bounced back immediately!

We are getting ready for Halloween now. Ella LOVES her costume! She was so excited to try it on. We probably won't do much trick-or-treating on Monday, but she will get to wear her costume to the big Halloween parade in Woburn. We're going once again this year with many of our cousins. I can't wait to see the kiddos all dressed up!

A Lot To Learn

I am usually a pretty strong person when it comes to Ella's doctor appointments. I have grown a thick skin when it comes to seeing her go through blood draws and uncomfortable tests. It has not always been easy and those first weeks in the NICU were very emotional. I have grown in two years and try very hard to be strong for Ella, but yesterday I cried.

Ella and Jason reading the Poky Puppy while waiting for
her test to be over!

I lost it.

I broke down in tears.

I couldn't handle the nurse moving the IV all around her bruised arm while Ella screamed. She was hungry, tired, and I am sure the needle jabbing her little vein did NOT feel good. She had every reason to cry and that just broke my heart. I am not as tough or as brave as Ella...I never well be!

Tuesday we had the ACTH stimulation test done to check her cortisol levels. It was a test we knew was going to be a tough one....it involved having an IV and multiple blood draws. It was scheduled to take at least two hours and Ella was not allowed any food or drink. This is tough to explain to a two year old who is used to waking up and promptly being served breakfast. Needless to say, it took much longer and the nurse administering the test was CLEARLY not used to dealing with pediatric patients.  I knew as soon as we were taken into the lab that she was uncertain about what needed to be done. There were multiple calls to the Endocrinologist and too many questions to make Jason and I overly comfortable or confident.  As the nurse tried to take the second blood draw (more than 2 hours behind schedule), she did something to the IV to make Ella's vein collapse. No blood would come out and rather than remove the IV and start again, she felt as though she could "save it". Despite my pleas to just call the pediatric stat nurse, she could only respond by asking me to just worry about calming down my daughter. I was furious!  We managed to salvage most of the test (they were able to finally draw one vial, rather than the two the doctor called for). The labs will be sent to California and we will have results in one to two weeks.

I think my tears were a combination of compassion for Pnut and anger for this nurse who was clearly not capable of handling the situation. I also think a person can only handle so much before they reach that emotional cliff. I slipped over the cliff....but today is a new day. I dust myself off and realize that I am stronger than yesterday. 

"Being a mother is learning about strengths you didn't know you had, and dealing with fears you didn't know existed."
  ~Linda Wooten

Baby Steps

Ella's baby steps are a huge milestone. We have waited so long and worked really hard to get to this point. I cried that first night she walked across the living room. They were tears of joy, and maybe a little relief too. I was so proud of Ella. In some crazy way, I think her walking finally gave ME more strength and confidence. I think this was when I realized, wow we are working so hard and it's paying off. Now I am taking my own baby steps, not just with writing this blog, but getting involved in another incredibly important organization as well.

Hosting the March For Babies Kick Off Breakfast in Albany.


Every so often I am asked to speak at an event, attend a parade or visit a school. It comes with the territory when you are a local tv reporter. It is a fun part of the job....getting out and meeting people in the community. Earlier this year I was asked to host the March of Dimes breakfast. It's a kick-off event for the annual March for Babies. I was honored to take part and excited about becoming involved with such a wonderful organization. The March of Dimes mission is to make sure ALL babies are born healthy. http://www.marchofdimes.com/

During Ella's time in the NICU, we learned a lot about the March Of Dimes. You are flooded with information and paperwork at the hospital, but the March of Dimes helps families sort through so many different things.

I was grateful for the information and support while we were in the hospital, but I don't think I truly understood how important the work of the foundation is until I was invited to the breakfast. I had the privilege of hearing from people who have come back year after year to raise thousands of dollars. Some had heartbreaking stories about losing a baby, yet they still wanted to make a difference -- use their grief to help another family. Other people had very happy stories, healthy babies and great successes thanks to research money raised. I knew then that I wanted to do more. I guess the local organizers and I were on the same page! They asked me to be a spokesperson for the March of Dimes of Northeast New York. This fall I will begin attending events and meetings to speak to groups about the work of the March Of Dimes and explain why continued support is so critical. I have been asked to share my own story. I am excited and nervous all at the same time. I know the speaking part will be natural for me, but sharing my personal experiences may prove a little more challenging....baby steps For me too I guess :)

The Ride Of Our Lives...

When you have a child, you know your life is going to change! I never expected I would be where I am today...and I wouldn't trade it for anything. I am entering the blogosphere at the encouragement of my sister. She says "our story" may be good for other families navigating the world my husband Jason and I were thrown into two years ago. I know, I know...I'm burying the lead...the opposite of all my journalistic instincts, but this story is different than the news that drags me into work at 3:30 am every morning. This is my life.

On June 15, 2009, Ella made her dramatic entrance into this world. We should have known right away that Ella was going to do things her way...and Jason and I were along for the ride of our lives. Our little Pnut was a few weeks early and tipped the scales at just 5 lbs. She had thick black hair and a tiny, tiny cry. It was love at first sight. She was sent up to the NICU for a closer check and a little help eating. Stressful: yes, but a minor bump in the road. When Ella was one week old, that bump became what seemed like a mountain (at the time).

Ella was diagnosed with a chromosome 18 abnormality. The genetics report lists it as mosaicism for monosomy 18p and monosomy for the short arm of 18 as well as trisomy for the long arm of chromosome 18. I remember the day the genetic councilor coldly came into the room and told us the many grim and hopeless statistics. She also said this was very,very rare...in fact, the doctors couldn't find any other cases containing this type of genetic makeup. I googled chromosome 18 issues (scary stuff). I cried and wondered what the future held. Then I put that report aside, buried it in the mounds of hospital paperwork and focused on my baby and doing everything I could for her. Ella went through every test, scan and screening a newborn could go through, brain ultrasounds, spine X-rays, eco-cardigrams, a check of her kidneys, eyes, ears...the list goes on forever. Everything checked out great!

Today Ella is a precocious two year old who continues to amaze us every day. We have learned so much since her birth. Now my hope is that sharing our experiences will help other families facing similar situations. It hasn't always been easy, but through persistence, we have gotten answers. The grim outlook we were given that day in the NICU is NOT the little girl who makes us laugh every day. Ella does not resemble any of the characteristics of chromosome 18. She is happy, healthy and thriving. We have found what we feel is the best situation for Ella's growth and development. We have a great team of doctors and therapists, and the amazing support of family and friends. Now I want to record our journey....for the love of Pnut!