re-posted from October 2011 Some days are Hard

I need to read this daily. Before bed. First thing in the morning. Mid-tantrum...either mine or hers. I have been feeling like SUCH a horrible mother lately.............................................
From outside the bathroom door, strangers could hear the desperate plea from a new mother. She only wanted Him to hear her and didn't care if anyone else did. Her daughter would be one month old in two days. During the next month she should be reaching new milestones. Holding up her head, smiling for the first time, meeting extended members of the family.

Gain weight. Rid the body of excess fluid. Maintain strength long enough to finish nursing or a supplemented bottle. Instead of a monthly goal, her goals were daily and hardly ever achieved.

Each day was recorded in a journal. How many wet diapers? What time were the medications administered? How long was the feeding and how much was eaten? The team of doctors we visited twice a week were seen more than family members. Only a select few could come visit. Did they just sneeze? Was that a cough? Infants at one month shouldn't be sleeping through the night yet. Under normal circumstances a new parent would be happy. This was far from normal. In and out of the hospital. Those chairs are uncomfortable to sleep on. We have had no privacy. We rushed a baptism.

Trauma doctors are now in and out of the room trying to stabilize her. The twenty-first is 5 days away. Are we going to Boston tonight? Will she live to see Wednesday? Will she live to see tomorrow? Will she be gone by the time I leave this bathroom? If I stay in here long enough pleading with You more, will I wake from this nightmare?

How did this happen? Why her? Why us? Why?


I will do anything You ask of me! Take me! Spare her life! If You just give her a chance at this life, I promise I will not take one day for granted! I will be a better person! I will be a better wife! I will be the best mother! I will let her know how loved, appreciated, special she is! She will know how much she was wanted! I will be forever grateful to You! Please God, let her live! Let her live! Take me...just let her live!

Some days are hard...and on those days, I reflect on how they could be much harder.



"Her name means peace. Her passion for life is remarkable. She is extremely dependable in all situations. She has a terrific smile. Adventure is what she is. Supports any cause that is noble and worthy. Everyone admires her positive attitude. Fanatstic things are accomplished by her." The Historical Research Center, Inc.

the one where I admit I am totally and uterally, bat-shit crazy

and there it is. In writing. As my title. And that is all that needs to be said.

February is a tough month

As I prepare to take Erin for her 6 yr. check-up, I can't help but recall where we were in our lives 6 years ago this February and how far Erin has come as far as health. I will NEVER forget the wonderful and kind and helpful nurses and doctors we encountered at Hasbro Children's Hospital as well as at Children's Hospital Boston. Strangers who rallied together to support us and family who have always been there for us. Every February I try to move through the month with a positive attitude as we raise money to give back to the hospital in Boston. But somehow I get stuck in the feelings of that time and I get a pit in my stomach as big as the holes that once used to be in Erin's heart. Today would have been the first day home from our first visit to Hasbro. It would only be 4 days before we would be back again and stay there until surgery in Boston.

She is her mothers' daughter

I am raising a difficult child. She lacks self control, self confidence. She has poor social skills, poor attention. She throws tantrums. Big, loud, on the floor, red in the face, screaming bloody murder tantrums. She lacks focus. She's the child who can't keep friends. The child who the teacher prays is absent. She's embarrassing. She doesn't listen to authority. She doesn't care to learn how to do things with help. She craves independence but can't stand to be alone. She's loud. At times she is hard to like. She breaks my heart. She tells me that she will one day leave me and never speak to me again. She's rude. She says mean things. Calls people names and makes faces. She shows little pride in her accomplishments because she doesn't care to accomplish things. She is sensitive to many things...clothing, food, words. She doesn't respect rules. She has a short fuse, a quick temper. I started noticing theses things during my post partum depression. Things only got worse once I stopped taking the medication that numbed me, quieted the background noise. I became overwhelmed and out numbered. I became a difficult mother and she looks up to me. I lack self control and self confidence. I have poor social skills and attention. I throw tantrums. Big, loud, on the floor, red in the face, screaming bloody murder, hold my child by her shoulders up in the air against the wall tantrums. I lack focus, desire, motivation. I am a bully. I pray that I get sick enough that I end up in the hospital in a quiet room with no one around. I am embarrassed. I pretend that I am the authority but no one listens. I don't care to do anything I used to enjoy. I fear that I will push her away so far that she will never speak to me again. I am rude to my family. I say mean things to them. I call them names and make faces. I have no pride. I am sensitive to many things, especially words. I hate to make rules. I have a short fuse and at times, a very scary temper. I sneak into her room late at night and kiss her soft face. Whisper in her ear how much I love her. That she is the best girl in the whole wide world and that I love her to the moon and back and forth. I stroke her hair and cry and apologize for being the way that I am, the way that she is. She is her mothers' daughter.

It's my birthday...

and I'll pretend it's not if I want to!!

I miss this....

I'm just hoping that in another 4-5 years when we are ready for one more I will still feel that way!

Awwwww!!!

Santa 2012

We have been visiting Santa and the Mrs. every year at the Audubon Society since Erin was a baby. This is by far my favorite holiday tradition. The snow falling today, the first day of December 2012, added an extra special "something" to the magic in the air!2012

2011

2010

2009

2008

2007

Merry Christmas, from our family to yours!

Autumn

"When autumn comes... it doesn't ask... it just walks in where it left you last

You never know...when it starts...

till there's fog inside the glass around your summer heart"

Happy Fall!

Fall-ish photos 2011

Fall 2011

I can't wait to begin taking some vibrant, colorful and fall-ish photos!

They say each child is different...

First nap at school

Ian easily out in 5 minutes... Erin after a 1/2 hour struggle!

What was funny to me was the fact that they both slept in the same spot in the same room on the same end of the cot!! I love my babies!

First day...Hooray!

Ian's first visit to the toddler room! September 5, 2012

Erin's first day of Kindergarten September 6, 2012

Mom's first day in her new classroom September 4, 2012 ???
Where's my "first day" picture?!!

First days

Sept. 2008

Sept. 2009

Sept. 2010

Sept 2011

and coming soon... a first day for my first AND my second!!!

busy...

So, I haven't blogged in a while. Come to think of it, there are many things I haven't done in a while! But at least I can say that spending time with my children is not one of them! The kids are growing like weeds! Erin turned 5 1/2 the other day...it was as monumental of a day as turning 5 was! No one prepared me for the phase that follows 5 1/2, though! I. Had. No. Idea. that turning 5 1/2 really meant turning 15!! Phew!! Holy hormones, Batman!! It seems like over night my sweet, spirited little girl turned into someone I hardly recognized... Man, the attitude!! After a talk (or two!) with family, friends and co-workers, I think I might be able to survive this phase with dignity and grace...or maybe just dignity! As we speak, Little Miss. Sunshine is on "punishment" and is quickly starting to learn that Mommy ain't no pushover anymore!! Anywhoo...on to Magoo and the little copy cat that he is currently! He is SO observant, quick and has a great memory! His favorite things to do is sweep like Mommy, use Mommy's cell phone, help Mommy with laundry, carry Mommy's pocketbook, use Mommy's debit card, make Erin's bed like Mommy...see a pattern here?!! He's just too funny! He isn't "talking" much but does tend to babble quite a bit! We know he has a lot to say! He LOVES to read books before bedtime in his crib by himself and always falls asleep with a blanket, usually his "Puppy" on his face! I've been trying to create some "me" time for myself and have taken up running again. I've already been in a few road races and love the feeling of clearing my mind all while putting some miles under my belt...it's a great stress relief and I miss it when I can't get out there. I've also been trying to make some time for just Greg and myself at the end of the day, because really, at the end of the day some day he'll be all I've got and I need to ensure that or relationship will be built to last! I haven't taken many pictures of the kids with my camera (flipping camera phones take all the glory now a days)but hopefully soon I will take more than mental shots to document their growth! Happy Summer!!

CHD Awareness...Re-posted

I first posted this in February 2010...

This is my little survivor...

Erin Alissa was born January 19, 2007...


She weighed 6 lbs.5 oz. and was 19 in. long...


When Erin was 10 days old we took her for her first office visit with her doctor...


That is when he heard a murmur.

Because I have a faint murmur that has never been treated with any medication I was not worried when he referred us to see a Pediatric Cardiologist. We visited Dr. Rotondo on a Monday 3 days later...

After careful testing, observation and an echocardiogram we learned that Erin had a congenital heart defect.

"Approximately 40,000 babies are born each year in the United States with a CHD. There are 35 different types of CHD's."

Erin was diagnosed with a Ventricular Septal Defect and an Atrial Septal Defect




Often, VSD's close on their own. This would not be the case with Erin.


We decided that it would be best to put a call in to Children's Hospital Boston and start the process of scheduling open heart surgery. In the meantime Erin needed to gain weight for her upcoming surgery...

We had Erin baptized on February 4, 2007 with only a few close family members present. We had to keep Erin as healthy as possible.




On February 7, 2007 Erin was taken by ambulance to our local children's hospital. She had an episode of shallow breathing. She was admitted, treated and then released 4 days later. She would be taking daily doses of the medications Digoxin and Lasix.




We waited for the call from Boston and in the meantime Erin lost weight due to her lack of eating. She would fall asleep during feedings. She wouldn't wake during the night like typical infants when they are hungry. Erin had no energy and was frail. We were very worried as we leaned on family for support...






Erin was admitted to our children's hospital again on February 17th. She was in heart failure.




We stayed at the hospital until February 19th and then were transported by ambulance to Boston for pre-op testing.



On Wednesday, February 21st, Erin underwent open heart surgery.





A week and a half later we were on our way back home. Erin still required daily dosed of Lasix to rid her body of excess fluid and we had to be very careful when holding her but you could tell only 2 days after her surgery that she was on a fast track to recovery.





Today Erin is a happy, healthy 3 year old! She will visit her cardiologist once a year for some time but requires no medication and has no physical limitations. The sky is the limit for Erin...


and somehow, I think she knows it!!




***UPDATE***
Erin just celebrated her 5th birthday in January and will not visit her cardiologist (knock wood) until she turns 8!!!



This is our story and sadly most stories of babies born with a CHD don't have as happy an ending.


Congenital heart defects are the #1 birth defect in the United States. Nearly one of every 100 babies is born with a CHD. Heart defects begin in the early stages of pregnancy, usually in the first 8 weeks. Most women don't even know they are pregnant. In most cases there is no known genetic causes of CHD's and there are 35 kinds. One out of 125 babies will be born with a CHD. There are prenatal tests that can be done to detect heart defects.An echocardiogram can accurately detect many heart defects and are performed by a specialized doctor and not an obstetrician. Some heart defects can be detected by ultrasound. Most heart defects can be corrected or helped with surgery, medicine or devices such as artificial valves or pacemakers. In the last 25 years, advances in treatments of heart defects have enabled half a million children U.S. children with significant heart defects to survive into adulthood.

For more information, visit www.littlehearts.org. If you are pregnant, talk to your doctor about your prenatal testing options.



Happy "Heart" week!