Merry Christmas

                                            Merry Christmas and Happy Holidays to everyone!

Our Visit To CHOP

Earlier this week we visited CHOP (Children's Hospital of Philadelphia) to meet the cardio-thorasic surgeon Dr. Spray and tour the hospital. After a drive down I95 we were at the hospital before we knew it, our appointment was at 11:15 so we missed all the rush hour traffic. The hospital has it's own parking so that checks one of the "must haves" on our list. Our first impressions of the hospital were good. A dedicated nurse case manager gave us a tour of the cardiac unit and answered any questions we had. She was very helpful and made Mark and me feel very comfortable with the idea of Piper having her heart surgery procedure at CHOP.

Our tour of the whole Cardiac unit included the Cardiac preparation unit, the Cardiac Care Unit and the Cardiac ICU. Liz also showed us the Ronald McDonald rooms for families. They had a TV room with chairs and refrigerators, another room with four separate bedrooms inside for parents to sleep in and a final room with computers and access to the internet. This checked another box on my list as I want to stay with Piper 24/7 while she is in hospital.

After the tour we met with Dr. Spray who was an incredibly nice surgeon; a million miles away from what Mark percieves as the typical, snobby surgeon type. He explained what would happen during the procedure and gave us the relevant statistics even though we are not big fans of statistics given our history. He gave us an idea what the size of Piper's heart is and what the size of the hole is. It's hard to imagine how a man with such big hands can do such a delicate and tiny procedure, but he does about 100 a year and is a leading expert in the field so he knows what he's doing.

We completed our tour of the hospital on our own by having lunch in the food court. The food was actually quite tasty; it certainly wasn't what I would call "hospital food". Mark was quick to point out that the food is most likey worse when it's for in-patients and not at and additional cost. This was something that stuck with us from the hospital we stayed in after Piper's birth. The hospital room and facilities were great, the food however left a lot to be desired.

So one hospital visit down, one more to go. We will have to make our decision after we visit NY Presbyterian (Morgan Stanley Children's Hospital) next week.

Merry Christmas (or as Mark being a Brit would say "Happy Christmas")!

Busy Busy Busy

I apologize for not writing as often as I've wanted to. December has been a very busy month. From Dr. appointments, photo shoots, holiday celebrations and the usual weekly events. Piper had her eyes tested and after dilating drops, that Piper hated, we found out that she has astigmatism and will most likely need glasses.   For now we are just enjoying looking at her beautiful blue eyes.

Since finding out that Piper will most likely need heart surgery in January we have been doing research into our options. After speaking to mothers whose babies have had heart surgeries at both hospitals (Columbia NY Presbyterian and CHOP). Mark and I have decided to visit both hospitals and meet both surgeons to make our decision. We have those appointments coming up this month.

Because of her upcoming surgery we have been advised to limit Piper's interactions with groups of people, so our plans for the holidays have been limited. I was looking forward to bringing Piper to my school - I love the traditions, especially during the holidays. First there is the holiday concert for the parents. Then the Pre-K class has a pajama party, with gingerbread decoration and a sing-along with the rest of the Lower School and Middle School. I wished I could have been there. On Saturday we have a holiday party at our neighbors house which we will be going minus Piper. However, my parents are looking forward to babysitting.

Not only did we go see Santa, we also had a photo shoot, to show off all of Piper's Christmas outfits. Here are just a few of the photographs that were taken.

Piper had her monthly developmental intervention session, where she was assessed on her skills so far. Her therapist gave Piper an A. She is on track developmentally and in some areas ahead of where she should be. I'm so proud of the progress she is making. One of the question the therapist ask was "Is Piper tracking moving objects?" I was very pleased to tell her that she does. Here is a clip of Piper following her fish mobile while swinging in her swing. Enjoy!!

Piper's First Visit With Santa

One of the many traditions of the holiday season is a child's first visit to see Santa Claus. It is a time that is cherished by all whether you are taking your child to see santa at the mall, at a brunch held at your local fire station or at the circus that is Macy's in NYC.
So yesterday I braved the mall and took Piper to have her first photo with Santa Claus. While waiting in the very small line(thankfully there were only three families in front of me!), I began to wonder "when do children start to believe in Santa Claus?". I know that taking Piper to Santa was more for my pleasure then hers as she slept the whole time, but I must say I would rather a sleeping Piper then a "crying my head off" Piper; I've seen many photos of older children crying as they have been placed on a strangers lap to have a photo taken.
I look forward to the many future visits to see Santa; visits where Piper smiles and visits where she cries, and visits where she whispers what she wants for christmas and tells Santa that she has been a good girl. As for now enjoy Piper's First Santa's Visit.

Polar Bear Plunge 2012

Before I was pregnant with Piper I never imagined I would have a daughter with Down Syndrome. When I was in high school I volunteered with the Special Olympics and I got a great sense of fulfillment helping out and seeing the athletes so full of energy and so happy to be participating.  In my eyes they were like any other child and now that Piper is in my life I look back on those days and hope that Piper will be able to participate in the Special Olympics and be as happy as the children I once helped seemed.

Last year Mark (my husband) participated in the Polar Bear Plunge in Seaside Heights New Jersey,  which raises money for the Special Olympics by having thousands of people gain sponsorship for the seemingly self punishing act of running into the Atlantic Ocean in the heart of a Wintery February. He was a member of the CAT crew which is in honor of our friend Colin who also has DS. This year I will be joining him and the rest of the CAT crew alongside thousands of others taking the plunge but this year Mark and I will be talking the plunge in honor of both Colin and Piper together. I am already exited for Piper's involvement in the Special Olympics some time in the not-too-distant future.

If you are interested in donating to the Polar Bear Plunge please check out this link:

Polar Bear Plunge

Can't Catch a Break

So after re-reading my post about Thanksgiving, it made me think about how one day we can be so happy and feel like our lives have turned around for the better, and then a few days later get some information that makes us wonder why can't we catch a break. When I started this blog I had hoped it would be an upbeat blog. I had envisioned me writing about the wonderful things Piper was doing, the goals she was achieving and just how much of a blessing she has been to our family.

I had mentioned in an earlier post that Piper was born with a Ventricular Septal Defect (a type of hole in the heart). Yesterday we met with the Cardiologist for Piper's two month follow-up appointment. After an EKG and an Echo (ultrasound of her heart) the Cardiologist informed us that the hole didn't seem to be healing as previously hoped and that due to the unequal pressure in the ventricles causing elevated pressure in Piper's lungs, short of a miracle in the next month, Piper will need open heart surgery to repair the hole in the latter half of January. We are now in the difficult process of deciding which surgeon and hospital we will be putting the life of our precious Piper in. The good news is that we are lucky to have health insurance that allows us to choose the best of the best, but we can't help but feel that's a small consolation for what is a terrifying time for us. We keep asking ourselves over and over "Why can't we catch a break?".

Piper's First Turkey Day

Thursday was Piper's first Thanksgiving. In the past Mark and I hosted Thanksgiving while my parents hosted Christmas. As it will be Piper's first Christmas we decided to switch hosting days. So after a visit from Loren, we made our way over to my parents for Thanksgiving. 

This year we have a lot to be thankful for. The last two thanksgivings were spent mourning over two pregnancy losses. It was such a wonderful day to be thankful to have Piper as part of our family. As always my mother made too much food, but all of it was delicious. Because of what Mark, I and our families have been through this past year it was nice just to enjoy each others company and really appreciate life and what we have.
I'm really looking forward to next year's Thanksgiving where Piper will be able to enjoy the food, albeit in a pureed form. It's better then just drinking breast milk 24/7. I hope you enjoy the photos from our first thanksgiving as a happy family.

If you just smile…

Every parent gets excited when their child reaches certain firsts. The first time they hold their head up, crawl, walk, smile etc. I feel as a parent of a child with DS those first milestones mean so much more. Our developmental interventionist asked us if Piper was smiling yet. At first it was hard to differentiate between a gas smile and a genuine smile. I am so pleased to say that I now know the difference and Piper is smiling. I don’t know exactly when her first smile was but I have been able to see many more since. Every time she gives us a cheeky little smile it warms us up inside, knowing that right now she is a very happy baby.

Physical Therapy

We had our first Early Intervention physical therapy session last week. It was great to finally be meeting the person who Piper and I will get to work with in helping Piper develop. She assessed Piper's abilities and gave us some activities to work on through out the day.

So now both my and Piper's day includes working on strengthening her neck muscles so she can hold up her head on her own.....
                                                 
.........Working in the prayer position on her side and with my hands supporting her shoulders, so she can develop her arm muscles so she will be able to find and hold her hands together and ultimately hold her toys.....

She even showed me some baby massage techniques that are especially helpful for babies with Down Syndrome. Piper gets all the attention!

Thanks for the Support

When I started this blog, I never thought it would become something big. I was using it as a tool to express what I was thinking and going through on this journey with Piper. I never expected that I would actually have followers. It has been wonderful to speak to so many different people about their experiences and read other blogs. It's been comforting to know that I'm not alone and that what Piper does or doesn't do is OK. So for that encouragement I want to thank those people who are now in my life and those who were already in my life, for their support of my family on this journey.

La Leche

Before Piper's birth I had decided that I was going to breast feed. I knew that breast milk was best for babies, it was just the natural choice. I'm certinly not against formula and from time to time have supplimented however I have no hang-ups about breast feeding so wanted to give it my best shot. When Piper was born, she had the natural instinct to suck like any baby, however she would suck in such a strange way that she struggled to latch on properly. While in the hospital I was visited by the lactation specialist who showed me some techniques that would help Piper latch on properly. Of course when the consultant was present Piper did great but sods law dictated that as soon as she left Piper continued to struggle.

Once we left the hospital I found pumping and bottle feeding the breast milk the easiest as Piper continued to struggle to latch on. Soon my days became consumed with pumping then feeding then writing down how much and when she fed and then changing diapers. It started to feel redundant to pump then feed. I felt like I a doing twice the work.

So today I went to my first La Leche League meeting, I really wished I had gone before Piper was born. It was helpful to hear from other mothers what their experiences have been like so far. It was also a chance for me to ask questions. I left feeling a new sense of "I can do this" and I wished I could go back in time and start from the beginning with Piper and try the new techniques I learned from other mothers. Needless to say I went home and decided enough with the pump (well almost......I still pump at night). Piper and I would do what is natural. I was going to bond with my daughter through breast feeding. Both of us will learn how to do this together.

Even though this posting is all about breast feeding, I took this picture and video of Piper just before we left. I was so proud that she was able to hold the bottle all by herself (well...kind of...she's propping up the bottle in the video...a little to early for grasping it).

The heart of the matter

On Friday I attended a new parent coffee, for parents of children with Down Syndrome. I didn't know what to expect from this coffee, as I'm new to the whole "group" setting. I guess I was just hoping to meet some parents who have been through what Mark and I are going through. The coffee was hosted by a mother who as three children, 6, 3 and 6 months. Her eldest, who has Down Syndrome is in the local Kindergarten and is doing great. She had commented how tiny her daughter was at Piper's age her 6-month-old daughter is wearing the clothes her 6 year old wore when she was 2 years old. Another mother has two teenage boys one of whom has Down Syndrome. The stories shared were worrying to a new mother, i.e. me! Experiences seemed varied but one child wasn't potty trained until he was 11 years old. I couldn't imagine changing Piper's diapers when she is 11 years old but these are things that are reality. Not that I think that every person with Down Syndrome will need to wear diapers until they're 11 and not that I think it is really a major deal in the grand scheme of things but this just highlights that nothing is a given in life.

There was another mother who was also new to the group; she brought her fourth child, only four months old. She shared that in two weeks he will be going for open-heart surgery. That is the current biggest fear that Mark and I have. When Piper was born she saw a Pediatric Cardiologist who told us that Piper has a VSD (Ventricular Septal Defect), which is a hole in the heart between the left and right ventricles. He told us that it was a very small hole and that he was hopeful that it would heal itself but it is still our biggest fear. After meeting the woman whose child is having open-heart surgery and Piper's follow-up Cardiologist appointment coming up soon both Mark and I worry about the possibility that Piper could need to have surgery. She is our precious little Piper and we couldn't imagine her going through this, not to mention the toll it would take on us. Perhaps that's selfish of us but I feel like we've earned that. So fingers crossed (Mark will be praying as he has been feeling recently that there is a god) that Piper doesn’t need surgery and that everything goes well for the little boy and his family that I met on Friday.

Early Intervention

By now we have had our Early Intervention assessment, the umbrella term that promises regular interventions from occupational therapy, physiotherapy, speech and language therapy, therapy therapy....well you get the idea.  Both Mark and I had no expectations about what the assessment would entail but had the general understanding that it's never too early too start with....well....therapy. When I received the call to set up the appointment I was surprised and impressed how quickly this was all happening but when I learned that a physical therapist and a speech therapist would be coming I couldn't help but wonder what on earth is the speech therapist going to do with a 3 week old. The only noises she makes are grunting noises, birds noises and cries and it's not like she'll be talking or struggling to say yellow or something similar so  what could a speech therapist possibly asses piper on.......

Well the day came and the two very nice therapists came to our house. The physical therapist asked us to get a blanket and her rattles. I was so glad we had rattles, I had no idea we should have been stimulating Piper with rattles since so far she spends most of her time eating, pooping and sleeping (not necessarily in that order). I was so proud of Piper as she was showing the therapist how well she can lift her head and how strong her arms are. So long story short, now Piper and I have set tummy time on a daily basis where we work on turning and lifting her head (with the correct posture of course).

Official

Mark picked up Piper's birth certificate this week. Seeing her name on an official document makes me smile. It feels so real, she's official. Her social security card also arrived in the mail so we can now get her birth registered with the British Embassy so she can be a dual citizen. We can also get her passports and set up a bank account for her. I feel like my to do list just gets longer. Oh well I better get started.

Family

Well lets see how this goes, I'm new to blogging. I never really knew what it was all about, or how to do it. So I never really got in to it. Maybe part of me was afraid that if I learned how to make my own blog and to actually start blogging, I would become addicted and never get anything done. I must say it didn't seem that hard to set this up.

Let me start off with why I finally decided to give blogging a try. I have a friend of a friend who is now becoming a friend in their own right, who writes this wonderful blog about her son Colin who has Down Syndrome. I believe one of the reasons she started the blog as a way to deal with the fact that Colin was diagnosed with Down Syndrome. I met Colin and his family less than three years ago at a birthday party, he was just a few months old but was full of life. I have loved seeing him grow and develop and it is great to see him progressing through the blog.

Recently my husband and I have begun reading the blog about Colin, and were touched when there was a posting about us and since then I have thought to myself, "I should give this a try, it can't be that hard right?"

So here's some history about my family:

I have wanted my own kids since I can remember and my husband and I had this grand idea of the perfect time to have a child; own a house, settle down, the right job etc etc. In Sept. of 2009 we found out we were pregnant and were over the moon. Everything seemed fine until we went to our 12 week ultrasound and learned that I had miscarried. We ultimately learned through chromosomal testing that our baby girl had Turner's syndrome, a chromosomal anomaly that more often than not causes miscarriage. We were devastated by this, more than either of us thought possible but we vowed to carry on and try again.

Later in the year we learned we were pregnant again. Our elation was still there but was battling with a fear that something again could go wong. It was almost like the previous miscarriage had removed the innocence from this pregnancy. At around the 8 week mark I fell ever so mildly ill having contracted Parvo Virus (also known as 5th disease) from a student in my class (I am a Pre-K teacher). While there was no real danger to me we soon learned that we would need extra special fetal monitoring as 1 in 20 who contract Parvo Virus will ultimately miscarry. The medical care and special monitoring I received was great and although difficult we tried to hold on to the thought that 1 in 20 was a good statistic. It meant that 95% of pregnant woman who contract Parvo will have a good and healthy pregnancy. After 2 months of extra ultrasounds my husband and I had this undescribable feeling that something was not right and at my next 15 week ultrasound we learned the devastating news that we had once agin miscarried. Chromosomal testing was again performed and our little girl was found to be chromosomlly "normal", but the amino came back positive for fetal Parvo. I was that 1 person in the room of 20!

Heartbroken, but still wanting desperately to have a family we tried again and with the blink of an eye so to speak, we were pregnant again. Our feelings with the third pregnancy were very different. We didn't get excited, we were too fearful to. We didn't do any announcing but even thought there was this underlying sense of fear we thought "third time's a charm right". Wrong! A month later I was rushed to the ER when I started bleeding from what was discovered to be a ruptured ectopic pregnancy. Two hours of emergency surgery later and luckily I am still here to talk about it. You see up until the bleeding I mostly felt just fine. I had no idea anything was wrong or that I was bleeding internally. In the following weeks I became somewhat depressed, wondering what have I done so wrong to deserve this much pain and loss. All I wanted was a family. How hard is that? I would think about all the people out there who don't mean to get pregnant and have babies. Those people who put their unborn babies in danger during pregnancy through lifestyle choices who ultimately have healthy children. None of this seemed fair.

After a few months of healing we tried again.......

When my husband and I went to our 20 week ultrasound we were told that they found two "soft markers" which when combined with our borderline normal nuchal lucency test (initially we had simply been told that it was normal, not normal but borderline) were indicative of increased risk of haveing a baby with Down Syndrome. They found an echogenic focus (bright spot on the heart) and pyelectasis (enlarged kidneys). My husband and I took the news very differently. Even though this is not what the Doctor said, he heard "your baby has Down Syndrome", and I heard "your baby has a kidney issue". Eight weeks later we had the kidneys checked out again and they were fine so my worries faded away and I didn't much think about it throughout the rest of the pregnancy. My husband on the other hand had a feeling throughout the rest of the pregnancy that our baby would have Down Syndromen even though genetic counseling had told us that even with the increased risk, chances were that our baby would not have Down Syndrome.

Our beautiful baby girl Piper arrived four days early. I guess she didn't want to be an October baby. When I was first holding her I was trying to see if she looked like she had Down Syndrome but honestly I couldn't really tell and I was so exhausted that I just wanted to go to sleep. My husband was 50/50 on it but had a gut feeling. Later that day, the hospital peditrican came and talked to us. We kind of expected the talk but I guess hearing it from the Doctor made it all that much more real. I was kind of numb and didn't cry when she told us her suspicion of Down Syndrome. A lot of things were going through my head about what Piper's life would be like etc etc. No parent wants their child to have a hard, tough life, and I instantly thought how hard Piper's life was going to be.

As the days went by, I didn't see my daughter as having Down Syndrome. I stated to see her as just my daughter, she was the baby I had always wanted, she is beautiful and precious. I was happy. It wasn't until we got the call with the chromosomal testing results that it really hit me. I was devastated and had been holding on to this slight hope that it would all come back "normal".

I'm not going to let Down Syndrome define who Piper is. She is going to be a lot of things in her life and we'll just have to wait and see what they are. For all I know she could be a an olympic swimmer, a drummer or a ballerina. She might go to college and get a job that she loves doing. Bottom line is "who knows!".

Being a parent isn't easy and I've learned that very early on in this journey. Piper is a blessing to our lives and will be to everyone she meets.