Its been awhile.....

Life is good:) Its been awhile.....Layla has been thriving. her Cardiologist has been seeing her every three months. Her stenosis is improving! Her Pediatrician is very pleased with her and her physical therapist not only loves her but says she is on point with all of her motor skills and physical milestones! Oh how I love my Bayba......

Well I'm back at work and I hate leaving her and my Husband is inSouth Amwerica in the ocean on a ship:( We Miss him very much! But he sent me flowers and Layla a build-a-bear and we get to email.....sometimes even talk :) Those are always good days. Ya cant put me in a bad mood when he calls! Thank god for good guys, few and far between but they are out there! And hey, they may literally be someone you never thought of but knew half of your life. Love you honey! and I love my lil snuggler Layla!!!!!!!

The most beautiful girl in the world!

So I totally have the most beautiful little girl EVER!!! No offense to other moms but you knowwe all feelthe same bout our kids:) Pictures were done by a friend Will. www.billyraayn.com AWESOME GUY!!!!! With really great talent and puppy dogs too!

Ok Update on he house situation......The owner excepted our offer now we are waiting for the bank to except. Scary!!!!! Not the whole owning a home but leaving my home :( I have lived with my grandmother since my parents divorce 24 years ago! How am I going to leave her????? I asked her to move to VA from CT with me but with her health and all of her doctors being there she on't leave. My brother sister mother father I can leae because I know they will visit and I will o home too but my niece and nephew and my grams are going to be the HARDEST to leave! My gram is EVERYTHING to me!!!!!!!!!!! and she ADORES Layla! so much so that if she so much as whines, she says its my fault and to hnd her over :) But I haveto leave, I have to grow up, I have my own family now n they come first. this is gonna be sooo hard!

As for Layla, we are going to ave to leave behind the AMAZING doctors that she has and start all over again! Can't I just ake everyone with me? or drive the 8 hours home to CT for Doctorsappointments? is that too crazy? yeah ok so t is a little nutty but I relly like these people and they have been soooo great with not only taking care of the most importan little being in my life but they have also help me keep my sanity by being sooo understanding and relatable with everything that comes along with a williams syndrome diagnosis. Even her Pediatrician said "it sucks tht your moving away". UGH! only an 8 hour drive! Just have to keep telling myself that!

Virginia

So hello from my blackberry:)

Layla, Pat and I drove to Virginia yesterday! I was sooooo happy to see my husband and he was sooo happy to see Layla. Pat went on to drive to SC to visit her son, daughter in law and baby grandson :) I can't wait to meet that little man!

So our trip was pretty uneventful, which is good when you arte driving 8 hours with an 11 week old:) we got home around 430pm and my husbands chief let him come home to us early!!!! YES!!!

Today we put a counter off on the house we want! Cross our fingers!!!! Lots more to tell but this damn keypad is too small:)

Not enough Time

My husband left Sunday Morning..... Not so happy about that one :( Layla seems to like him more than me! Hahaha! I cant get her to calm down or fall asleep and all he has to do is put her on his chest and she falls asleep instantly.

Its amazing to me how much he adores her. Not only did I never see the two of us with her and married but I never saw him being so obsessed with this tiny little girl. Its probably the sweetest thing I've ever seen. I love him <3

So our week with Daddy went well. I had some minor speed bumps but all in all it was a great week for the three of us. Layla is starting to talk, not really talk but coo and well, talk back when you talk to her. Shes very alert! So far all of the bad things I've read about Williams do not apply to her. As my husband put it...."So she's going to love music and have pretty eyes, Whats so bad about that?" If it were'nt for him I think I would be having a break down right about now.

Her Pediatrician gave us some good news as well, apparently he has two patients with Williams Syndrome, ands both are in college, drive, one is a drummer, and they have great personalities. Fingers crossed she'll be able to do all of those things.

A friend, I guess you could say a friend of the family since we all pretty much love her, Christine sent me an email with a poem I had never heard. It's probably the best description I've heard yet of how it feels to be where I am. My husband said the reason why we feel so different about this is because he never wanted kids so anything she does he loves, but I had this idea of children forever and now that idea is gone. Anyhoo Thank you to My hubby for being the giant child that he is and making me not sooooooo high strung, and Thank you to Christine for your kind words and a beautiful poem to help me see I'm not alone.

Welcome to Holland

by EmilyPerl Kingsley

I am often asked to describe the experience of raising a child with a disablity-to try to help people who have not shared that unique experience to understand it, to imagine how it would feel, it's like this.....

When you're going to have a baby, it's like planning a fabulous vacation trip - to italy. You buy a bunch of guide books and you make your wonderful plans. The Coliseum. The Michaelangelo David. The gondolas in Venice. You amy learn some hand phrases in italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The Stewardess comes in and says, "Welcome to Holland." "Holand?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But theres beena change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't take you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around........and you begin to notice that Holland has windmills.....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy.....and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away.......because the loss of that dream is a very very significant loss.

But....if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things.......about Holland

Mommy Loves you Layla

Monday Tuesday and Wednesday

Monday

Met with Dr Mcgrath for Yale Pedi Genetics. Very nice Doctor! So far everyone at Yale has been great to Layla and to me as a nervous and probably seemingly crazy mother :) He gave us th run down on Williams Syndrome, what to expect and some resources, he also said her pediatrician will be able to give more details.

Daddy came home tonight as well!!!!!!!!! Thank GOD! I've missed him and even though shes only two months old, she misses him too! You can tell when she stares at him. Funny this is She fell asleep at 8:30pm, I left at 10:30 to pick him up at the airport, we got home around 1am and she stayed asleep the entire time for my mom. When he and I got home we let her sleep, I woke her up at arounfd 1:45 to let her have her last feeding for the night before the ctah in the morning. If I had let her, she may have slept through the night. Go figure its when my husband comes home she sleeps!

Tuesday

So I let the hubby sleep for 3 almost 4 hours, I got about an hour and so did my mom. We go to St Adeans at 5:30 am and Layla Annabelle was Christened. She looked soooo pretty! MY sister is her god mother, my mom, Rich's mother and my sisters boyfriend came to the Church. Suprise Suprise, She slept through it! and didn't even freak out when Father Shepard poured the water over her head! Soooooo Proud!

From there we went to Yale. If it werent for my Family and my husband, I think I would have gone crazy yesterday. She went with no problem, The Fellow Dr Lee was one of the nicest people, her Nurse Shelley!!!! GREAT! Dr Asnes did the Cath and couldn't have been nicer or more informative! After she was done, they let me follow her up to Pedi ICU, She was soooo groggy my poor lil Baby! But I knew she was in good hands and I felt ok, It wasn't as traumatic for me as I expected :) SHe slept for most of the day, so my husband and I got our naps in. Mom and Stacey left, and we spent the night in the ICU. She would have slept alot better if EVERY NURSE AND DR didnt poke and prod at her ALL night! She did Awesome though! Her nurse said she was a fighter and that when they gave her the gas to put her to sleep she still wouldnt relax her arms until they gave her the paralyzing drugs, then she finally relaxed! She's my little fighter and I know shes going to be just fine after last night! She took everything like a lil Champ! Thank You Yale Pediatric Staff, Pedi ICU, Pedi Cardiology, Pedi Anesthesiologists! You were all amazing and made her comfortable while also staying human when speaking to a very nervous mom! Thank You For taking care of my Baby Girl!

Wednesday

WE ARE HOME!!!!!!!!!!!!!! And it's a beautiful day! Hubby is sleeping, baby just woke up from a lil nap, Gonna shower and take her for a walk to enjoy this amazing weather. Thank You to EVERYONE ofr your well wishes, thoughts and prayers! You don't know what it means to us! And Layla will hopefully see how much she is loved by everyone. Thank you!

Happy Keaster Easter!

Oh How I love my niece and nephew! And how they love Layla or as Justin calls her......Bayba :)

This Picture sums it up, Big sister looking up like why is my brother so nutts! while holding the squidget. Squidget is Laylas nickname I gave her because she's a squirming midget :)

Easter was good. Good to see my family.

Layla has angels and a dog to protect her!

That is King, he was my rescue but is now head over heels for his baby Layla. He is the most amazing dog, gentle, sweet and VERY protective. At night when I make a bottle and shes screaming he jumps on the bed and stands next to her until I get back. I think he is making sure the cats don't bother her:) Whatever the case may be, he loves her as you can see.

We left the house today. We went to Pat's house with Poppies and a bleeding heart (plants) for her garden. Pat is the mother of Ryan, and she is now a part of my family! We lost Ryan 2 1/2 years ago :( my heart breaks everyday still. Today while we were in the garden, Pat was holding Layla and telling her how her uncle Ryan was in heaven telling all the angels about her. And I know she is right, I know Ryan is up there and he's going to push me through this. I always say, if Ryan were here he would yell at me for crying and tell me that everything is fine and I'd belive him! Because if it weren't fine, he'd make that change. There are too many good memories of him. I love him and I know he's watching over all o f us.

I've been getting a lot of really nice emails also, I just want to say Thank you to the people who are thinking and praying for my little girl! It means the world to me to know she has so much love behind her. It may take me a while before I really start to venture out but soon, I think we will start. Tomorrow is going to be hard, it's the first day I'll face my family. I'm afraid I'm going to break in front of them. I dont want to fall apart, I need to be strong for this little person. I don'y want her to feel stress in me. I just want her to be happy and to know she is safe with me........and her Dog :)

We were meant to be.

This is the beautiful face I get to see everyday :)

Ya know when someone asks, "How are you?" , I feel like saying "How the F do ya think I am!". I want people to be honest and not say everything is going to be fine, I want them to tell me, they dont understand, they dont know what to say. Dont lie and say its ok because its not yet and Im not yet! This is probably why I have yet to talk to my mom or people who dont have expierence with this. I dont want to answer questions, or hear stupid things like "do you think the cat hair caused her heart problems" or " Theres nothing wrong with her, the doctors are wrong" Are you serious????? Like for real, did you just say that? This was said by an aunt! WOW! At least I have some people who can relate.

Last night we met my oldest friend Breigh for dinner. Breigh is probably the one person who can relate to my situation without actually having any kids. Breighs older brother is special needs. He's the greatest kid, well he's older than the two of us so I guess I can't call him a kid. Anyway, Breigh gave me the most incredible compliment which in turn made me cry like a 3 year old who just got a time out! She told me not that I deserve to have Layla but that if anyone should raise a special needs child, I should. She reminded me of how I stuck up for Brett when we were younger and kids were mean, she said I was one of the strongest people she knows. Thank you Breigh, I heart you and your family forever!

I don't feel strong, I feel heavy hearted, sad, hurt. I love this little person so much but I'm so scared I'm going to fail her in some way. Yes growing up around Brett does help. I wasn't sheltered from different, and I am very open minded because of this but can I do this? The word "I" is being used a lot........My husband is in the NAVY so shes going to be with me about 80% more than him. If he were here I think it would be a little easier. I gotta stop being so negative. We are going to be fine! WE WILL FINE!

I love you Rich, more than you could EVER understand! With all of the "bad" that keeps coming our way, you suprise me each time by showing me how incredible you are and how you can find the good in any situation! Thank you for you and Thank You for our extra perfet little girl.

April Fools???

I wish someone would wake me up! I wish the doctors would call and yell "APRIL FOOLS"!!!!!! Shes perfect, I see it, why can't they? So she has a little bit of an extra special heart, but they can fix that, they can make her better.

She is doing great today. She'll be 8 weeks on Monday, that will also mark the first time we meet with the Dr McGrath at YALE Childrens Hospital Genetics department. YAY! The excitement is killing me*sarcasm*. Is it horrible that I'm jealous of people with "normal" children? There are people who dont deserve kids, or have babies born addicted to drugs! I know I didn't do anything to make this happen but REALLY WTF! Am I supposed to feel this way? I know her world will be everything it is suppsed to be and she'll be treated no differently than any other child but will she know shes different? Will she grow up questioning why she cant do what other kids, teenagers or adults can do? I want to make sure she's safe from feeling alone and different. I want to protect her from EVERYTHING! but in the same breath give her freedom to be her.

In other news, I still have yet to even really speak to anyone in depth besides my sister. I dont know why but I feel like she understands her. I just wish my husband wasn't so far away. I wish we were with him in Virginia. Stupid VA only built Ranch style homes and we cant find anything we like thats not directly located in the GHETTO! We just need a home for the three of us to call our own and a place for Layla to grow up happy and healthy. I know YALE is the best for kids but I need him and she will need him just as much. This really is a reality check and it sucks!

The Diagnosis is Williams Syndrome

This is my beautiful baby girl. Today I got her genetic test results back and it is confirmed she has Williams Syndrome. Although she does show some physical features, she does not carry any of the symptoms. To me, this just makes her even more precious, I loved her the moment I knew she was inside of me and I will love her until the day I'm gone. This is supposed to be the happiest time in my life but instead I'm scared to death of whats to come. Not scared to take on the role of motherhood to a special needs child but scared of all the bad pepole in this world. These kids are so excepting and loving and OVERLY friendly, How d I kow some sick creep isnt going to take advantage and hurt my child? Will she know the difference between good and bad, right and wrong? Will she be able to say no if someone hurts her? I'm new to this and I need HELP to understand what will happen next. If anyone can help me please do! This will be my mental break, This will be where I write my day to day with my beautiful baby girl. This will be where I can hopefully learn how to be a good mom to an exceptional child and love her more than anyone will ever know.

www.williams-syndrome.org

I can't bring myself to go through the entire definition of Williams Syndrome, I've been crying for the past 12 hours. Please follow the link above for now.

Meet Layla

This is our baby girl Layla:) Born 2-8-2010 at 5:18pm at just 5lbs 7oz. Screaming from the minute she was born.

My husband was amazing!!!!! Having her made me realize how much I love him. I couldn't do anything for myself or for the baby. The first day I was completely numb from the waist down, and after that I had a nerve stitched into my scar. FUN!!!! I was in sooo much pain but my husband took over and did everything for me a Layla in and out of the hospital.

When they sent us home from the hospital, they scheduled us for an appointment with a Yale Pediatrics Cardiologist. So she went for another Echo and to meet with the Cardiologist Dr Weeks. She explained that our little 5lb baby had a VSD ( hole in the septum of her heart) Valvar Pulmonary Stenosis and Supervalvar Pulmonary Stenosis. She said it probably would just need to be watched over the years and to come back in two weeks. So we did and they did another Echo. This time the doctor sounded a little more concerned but still said they were pretty sure the Echo was overstating the pressure in Layla's heart. Come back in two weeks........So we did and again it was worse. Now they want to do genetic testing and schedule her for a cardiac catheter, come back in a week to meet the Dr and Anesthesia Dr's that will perform the procedure. GREAT! So last friday I went to meet them and sign release forms, the doctor saw that I was visibly upset about having to wait on results from a genetic test, so he had the blood drawn that day.

Now my heart is racing and my little girl is going to get answers but do I really want to know???

The Start, The Pregnancy

My husband and I met when I was 15. Go figure, 14 years later we'd be married with a baby girl. Though we had known eachother for so long, we lost touch for about 4 years. Then one day throught the magic of facebook and his then roomate in the NAVY, he found me. 5 months later I found out I was pregnant, about 2 weeks after that, we were married. Not the fairy tale wedding every girl dreams of, but I was happy! We were starting a family, the one thing I've always wanted, someone would call me mommy soon.

At first the pregnancy was NOT fun, vomitting and constant nausea, but then the reality of this little person inside of me hit. I felt this odd rolling in my stomach at work one day and quite honestly was grossed out. That was the first time I felt her move, that was the point I think I really turned into a mom. At 18 weeks I found out the sex. My husband was still in Virginia so he found out via telephone thanks to my friend Carol who joined me for some doctors appointments. The Ultrasound tech went through and checked the baby from head to toe. When she was ready to tell us the sex, Carol asked if I wanted to be on the phone with my Husband, I said no because I didnt want to hear him get dissappointed if it was a girl (It was sarcasm). No sooner did I say that, the Ultrasound tech said the baby looked wonderful all its parts were there and it was a healthy baby girl. We cried, my husband asked if the baby was healthy and went on to call family with the news.

Everything went pretty good from there.......with the exception of migranes and heartburn :( I only gained about 29 lbs, Which I thought was great. That is until 1 week before my due date. One of the Doctors measured me and said I seemed small. He then did an ultrasound to see the baby was measuring about 5 weeks smaller than normal. From there he sent me to YALE for a more defined Ultrasound, and they found that I was measuring small, but I was reassured that everything was fine.

I was induced on February 8th 2010. The contractions weren't bad until they broke my water!!!!! Holy C*&P!!!!!! I was in active labor for about 2 hours and dialated about 3 cm. when the doctor said I could FINALLY have an epidural. Ahhhhhhhh Relief...........Until about and hour later the nurse came in to check on the baby's monitor and said her heartrate was dropping with each contraction. She left to call the doctor and within minutes she was in my room telling me we were going in for an emergency c-section. This was NOT part of my plan! I was so scared and all I wanted was to hear my daughter cry. She was born about 20 minutes later at 5:18pm, and hasnt stopped crying yet.

So then...........your basic hospital stay with a c-section. Vistors, presents, my hubby and our brand new baby girl Layla Annabelle. Doesnt get much better than that. A few days into our stay at the hospital they said Layla had a heart murmur. Ok no big deal, until they asked me to sign a release form sending her echocardiagram to YALE Childrens Hospital. Thats when it all began.

The Diagnosis