Saturday, January 28, 2012

Road to Recovery Pre-Op day

On Wednesday we drove down to Philadelphia to have Piper's Pre-op testing done. We arrived at 10:45 for our 11:00 apt, and I think it wasn't until then that it really set in that she was actually going to have the surgery. Piper was a trooper during all of her Pre-op testing though understandably She wasn't a big fan of getting her blood taken. Funny though, as soon as I left the room with her where they took her blood, she stopped crying. All of the staff we have met have been wonderful and so caring. They really seem to love what they do. We knew we had made the right choice of hospital.

Later the same day we met with Dr. Gil, who is going to be Piper's cardiologist while we are in hospital. Mark and he got along very well. Their back and forth banter was quite funny to watch. At the end of our visit Dr Gil asked me if I ever get a word in. I' m not sure if I was even able to answer him before Mark said something again. As many of you know Mark, that's just who he is.

As we knew we were going to have an early morning we booked ourselves a hotel. So after our meeting with Dr. Gill we drove over to the hotel, to just chill, eat an early dinner and go to bed.

We ended up having frozen yogurt, then dinner (a strange order I know) while watching a movie on pay per view (wow those are expensive).  Piper and I had fun trying to take a bath in the hotel sink, I really needed more hands and it made me appreciate her bath tub at home so much more.

When it came time to actually go to sleep. I couldn't at first as I realized that if I went to sleep the next time I woke up we would be taking piper to surgery. Needless to say we did get to sleep.

Monday, January 23, 2012

A Whole New World

With Piper's surgery looming over us I have been doing a lot of reflecting. I have moments where I picture what Piper will do with her life. I picture her being a big sister, going to school, being a girl scout, participating in the Special Olympics, dancing on a stage, painting beautiful pieces of art, traveling the world and more importantly loving life.

I remember when she was born and I found out that she had Down Syndrome, I instantly thought of all the things she wouldn't be able to do because she has Down Syndrome. But I feel like that is a huge misconception that most people have about Down Syndrome. I remember shortly afterwards thinking that even if Piper didn't have Down Syndrome who says she would have done all the things I thought she would do.

Since we were blessed with Piper she has been responsible for introducing both Mark and I and our respective families to a whole new wonderful and supportive world. My mother-in-law sends us newspaper clippings of a column in a UK newspaper that is written by a father of a boy who has Down Syndrome. My father trolls the internet for any articles relating to Down Syndrome. All this while I  mysef read blogs written by strangers and by new friends. Our misconceptions have been corrected and we look forward to what this journey has in store for us.

If Piper didn't have Down Syndrome I wouldn't have been introduced to the many wonderful parents of other children with Down Syndrome. I wouldn't have been introduced to their lovely children who have hearts of gold and who make me know that everything will be OK and that Piper will have a wonderful life. I feel extremely lucky to have Piper, and my loving supportive family.

Count Down to Surgery.

It's been awhile since I've posted. I've had a lot on my mind with Piper's upcoming surgery. I've been busy getting mentally prepared and making sure everything is in order. It's been really hard and obviously Piper has no idea that she is going to have this major surgery. People keep telling me that it will be OK and that the surgeon does this's like riding a bike for him. But it isn't something WE do everyday. I know this surgery will give Piper the chance of a long healthy life, but I dread walking to that door in the hospital where I have to pass her to the hospital staff, and then go wait in a waiting room for what will feel like an eternity. I just can't wait until it is all over and I can take my baby home with me. But before that day comes I would like to thank everyone who has and will be thinking of us over the next week. I plan on posting while in hospital to keep people updated on Piper's road to recovery (great title for my next few blogs). Until then.....

Friday, January 13, 2012

Save The Date...

Normally when people send out 'save the date' announcements it is for their wedding, what is supposed to be the most memorable amazing day of their lives. I would agree the day I married Mark was a very special day and it lived up to all my expectations. But I must say that the day Piper was born has surpassed my wedding day.

After a day in labor she arrived in the early morning. Even though I was exhausted and just wanted to sleep I knew that this little lady meant the world to me, and that my world would never be the same.
Now as many of you may know if you have been reading my blog, Piper has a VSD, and needs surgery to repair it. And I am happy to announce that we now have a "Date"...

Unfortunately her surgery is scheduled for the day before my birthday, which means I won't be turning 30 this year, however she will be getting the surgery that she so desperately needs. So from now on I will celebrate my wedding anniversary, Piper's birthday and the day Piper's life was extended. At least I get to stay the same age for a year!

Thursday, January 12, 2012

Piper Impresses PT at 3 Months

This week Piper had PT and DI, and has impressed both of her therapists. In PT, Piper first sat on my lap while holding her head and making eye contact with her therapist. She then even tried to help turn the pages of her electronic book. A few minutes later she started to squirm and straighten her legs so I held her up while she tried to stand, it didn't last long but still felt really good to see her wanted to stand.

We moved on to some tummy time where Piper showed how well she can hold her head up as she looked at ball as the therapist moved it from one side to the other. We worked on rolling which she is starting to get the hang of, especially when she is in her cot. She likes to turn herself, and really enjoys lying on her side.

To check her ability to hold her new favorite toy we had her lie on her side, as you can see she grabbed onto the ball and even tried to stick it in her mouth to explore it more.

Talking about putting things in her mouth, she has found her thumb and enjoys sucking on it and sometimes she tries to fit her whole hand in her mouth.

At the end of every PT session Piper, works out on a ball it took her awhile to enjoy it but now she does. Her therapist has learned that Piper likes being sung to, so if Piper starts to get upset. She starts singing "The Wheels on the Bus" or "Old MacDonald".

In DI, we worked on making sounds with Piper. She is a real chatter box now. She most get that from her Daddy. She's making lots of ooohhhs and ahhs followed by hhhhuhhhs, I even heard a g sound. can't wait till she starts mmm, so she can say mommy. :)

After repeating her noises we worked on "reading" her book. She loved it, here is a pic of her enjoying the nursery rhymes and flashing lights of her book.
I love seeing Piper develop,  and look forward to seeing her continue. I will have to soak up these next three months before I go back to work.

Thursday, January 5, 2012

The Decision of a Life(time)

Over the holiday period we visited New York Presbyterian Children's Hospital to help us decide which hospital to have Piper's heart surgery. Surprisingly it didn't take that long to get to the hospital, my father was  very nice and offered to drive us into the city. After waiting for a long time for a consultation with finally met Dr. Bacha, who is a very well known surgeon and is also the Chief of Congential and Pediatric Cardiac Surgery. He was very friendly and informed us about the procedure. I would say he had a very warm bed-side manner which is important.

After our consultation we requested a tour of the CICU and step down unit. The lady who gave us the tour doesn't normally give the tours but was certainly as helpful as she could be (the hospital was short staffed due to the holiday period). If we were to choose NYP Piper would have her own room in the ICU with a sofa like bed for me to sleep on and the in the step down unit she would share a room But I would still be able to stay in her room.

So now it is decision time. Tomorrow (well it was tomorrow 2 days it's yesterday) we have a follow up appointment with Piper's Cardiologist Dr. Kaufman and we will have to decide where to schedule her surgery so it can be performed towards the end of January. Mark and I have been talking to friends and family members and have gone over and over, again and again, a long list of Pros and Cons. It seems each day we lean towards one hospital over the other (CHOP) only to change our minds the next day.

Both CHOP and NYP are well renowned hospitals, both surgeons are at the top of their fields, both hospitals say Piper will most likely be in the ICU for two days and will have her own nurse. So after piles of research and picking various people's brains, it has come down to where our gut feels most comfortable sending Piper. What we are worried about is making the wrong decision. So many people have told us that between CHOP and NYP there is no wrong choice but that's easy for them to say as most of them are not in the predicament that we are. It's amazing how alone making this decision has made us feel.

So after many agonizing days we have decided to have Piper's surgery at CHOP, and have since scheduled it. Now we can somewhat relax a least until the time for the surgery rolls around.

Monday, January 2, 2012

Christmas Day

Piper's first Chrsitmas has come and gone. Even though for her it was just another day, I really enjoyed it. We started the day being lazy staying in our pajamas while we opened our stockings. With Marks help Piper opened some of her stocking presents.

 When my parents arrived we all opened our presents. Piper had the most presents by far. A lot of them were developmental gifts which I love and can't wait to use. I will post photos of Piper using them later. She also got her first Giants football jersey from her Daddy, however she will have to wait until next season to wear it as he got size 12 months.

Mark cooked the whole turkey dinner with the traditonal British trimmings (chestnut and sausage stuffing, roasted potatoes and parsnips, brussel sprouts - yummy!) and I helped with the mini sausages wrapped in bacon.

After dinner we sat on the sofa and chilled while digesting the feast we had just completed. We opened the stocking that my parents brought over then had our official photos taken in front of our tree.

Sunday, January 1, 2012

Happy New Year!

Happy New Year's!

There are more posts to come and catch you up on what has happened over the holidays.