Saturday, May 24, 2014

1 year ago today was Tyler's open heart surgery

I can't believe it's been a year since Tyler's Open Heart surgery.
1 Year.
365 days since my beautiful baby boy had his open heart surgery and bravely fought his way to recovery. It has been 8,760 hours since our lives changed forever.

When Tyler was born, we were so relieved he was healthy and perfect, and we had no idea what was about to happen in a few days. My daughter Julianna had a brief stint in the NICU after she was born for a small pneumothorax. So with Tyler, when we were discharged to go home, we were relieved and thrilled to be going home with our boy.

A few days after we were home, Tyler was brought to the ER by my husband on a Thursday evening, and nothing was the same after thatClick here for Tyler's story

In the last year, we have celebrated many milestones as you would with any other baby. HERE is his "One Year Old" post from the other day. Tyler has grown and developed into the most amazing little boy, who is clearly meant for big & amazing things in this world. He is such a special little boy and I love him more than I could ever possibly put into words. I never knew how much I would fall in love with this little boy, because it's so very true what they say about moms and their little boys. Please don't take it the wrong way, Julianna is my beautiful little girl who I love so so so very much! You just never quite understand how much room you have in your heart for each child until you actually have them. It's really quite incredible.

Tyler's smile lights up a room and his personality is happy, beautiful and loving. He is so innocent to the world and the bad thing he went through in the beginning of his life. He loves to be held all of the time and snuggle with mama and daddy. It makes me sick to think 20 or 30 years ago, babies passed away from heart defects because the CHD/TAPVR surgery just wasn't in existence yet, and no one operated on baby's hearts back then. God Bless modern medicine and the surgeons NY Presbyterian Children's Hospital (CHONY) ... and of course the pediatric cardiologist that found his defect in the ER. They saved his life and they are the reason Tyler is here with us today.

In the last year, Tyler has been to a multitude of doctor appointments with the pediatrician, cardiologist, neurologist, had blood drawn more times than I can remember, was on Digoxin heart medication for 6 months, came home with halter monitors for 24 hours several times from the cardiologist, had his 'early intervention' appointment, and an ER visit. Not a day goes by where I think I need to check him while he's sleeping because I ask myself "What if his repair gives out?". I am always watching him to make sure he doesn't turn blue (a common symptom of CHD babies, even the 'repaired' ones). This all gets easier with time, but I don't know if it ever truly goes away. We as parents will always worry about Tyler's heart health, and will always stay on top of everything, and educate him so later in life, as an adult, he stays on top of it too.

One year later
Tyler is off all medications & he now sees his cardiologist every 3 months. His future prognosis is a positive one and we pray he will never need any further surgeries. Nothing in life is guaranteed though. There will always be a risk of a side effect from his heart surgery.  As his heart & body grows, all the repaired parts need to grow with it. The biggest long-term risk for him is stenosis of the (repaired) veins, and this will always hang over our heads. Any time a cardiologist appointment is coming up, I can't help but think, are they going to find something wrong this time? Will this be the time they see something not growing correctly? I don't spend my days worrying about this, but it is always a concern to us.

I see his scar every day, and while it is part of Tyler, it is a true-life reminder of his congenital heart defect called TAPVR. We will continue to move forward and heal with him. I will help spread awareness through my blog, facebook page and raising money through the CHD Coalition in NJ each year.

Some pictures from the last couple of weeks.

Thursday, May 22, 2014

Tyler is One Year Old!

I really can not believe my little boy is One year old. It doesn't seem possible we have been through an entire year since he was born. It's been a year of random ups and downs, happiness & emotional times. Overall it's been a great year to look back on. My little beautiful baby boy is ONE. We are blessed by the happiness he brings into our lives. It is so true what they say about Moms and their baby boys. Little boys are so special with their mamas!

Here are some of Tyler's milestones at one year old.

Sooo close. Not there just yet. He furniture surfs and can stand on his own briefly. Soon he will be walking/running/climbing. (Oh wait he already climbed up on Julianna's chair!)

He's been crawling for 3 or 4 months ... he's an expert. Fast little bugger too.

Eating & his routine
Since he only has 3 teeth, he's not eating much more than pureed foods, puffs, and a few mushy finger foods, like small diced bananas. Breakfast is oatmeal with a mixed pureed fruit. Lunch is 2 pouches of mixed veggies/fruits. Dinner usually consists of oatmeal, veggie mix and fruit. Now he is able to eat diced up mushy fruit, we're doing that too. I'll try veggies next. He has a small snack around 11am and then at 3:30 with his milk. The idea of pureed meat in a pouch kind makes me cringe, so we have been staying away from it. Tyler eats some kind of bean every day, so he still gets plenty of protein. The pediatrician said she would like to see him have some meat though, so I am going to start giving him some mushy white fish or chicken. I think he will like it, even with his 3 teeth! We eat meat, so I am not against it, I was just not into giving him pureed meat (yuck!).

What brands of food & milk do we feed Tyler? 
His pureed baby food has been either Ella's or Plum Organics. His puffs are Plum Organics also and his crackers are Baby Mum-mums. Those are the best crackers for babies without a lot of teeth that are more than able to eat snacks. His milk is organic whole milk. Pretty much anything I put into him is organic, along with my daughter too!

No more formula. Yay! Tyler drinks whole milk now and had no issue moving to milk. He has an 8 oz bottle when he wakes up. Then some milk with lunch. He has 6oz of milk at 3:30 with a snack, and then 4-6 oz of milk before bedtime.  I am working on weaning him over to the sippy cup for milk. He loves water in a sippy cup - and has it with dinner and lunch and morning snack.

Naps & Bedtime
Tyler takes 2 pretty solid naps a day. One in the mid-morning around 9:45-11ish, and the other mid-afternoon around 1:30-3ish. He goes to bed at 8pm and doesn't make a peep until 7am. He is a great night time sleeper just like Julianna. Not as good as a napper but almost.

He has 3. That's it. More are coming really soon!

Not much. He has his own baby talk. Lot's of it. He babbles on and on and tells us a bunch of stuff in his own language. He does say Mama and dada. He has his own communication with Julianna - baby talk that I think she understands more than we do.

Can you tell he likes his life-jacket? HA! (We will be getting him a new one that is not so stiff)

Tyler weighs 20 lbs 8 oz. He is about 20th percentile in weight & height. (What's crazy is, I have lost 30 pounds since January - that is one of him plus 10 lbs!)

Other things
He loves to play Peek-a-boo (Where's the baby?!) and laughs hysterically. He likes when someone claps, but he is not clapping yet. He is not waving bye-bye yet - but likes when someone waves to him. He likes pat-a-cake but is still learning how to play it. He is able to figure out shape-sorting toys - he gets the ball in the hole, and is so proud of himself. He also likes to push any toy with wheels; his trucks, school bus, train, dump truck, wheel loader, etc.

The Scar
Tyler's scar from his Open Heart Surgery (from 8 days old) is healing up beautifully. It will never go away, but it won't be as noticeable. (Click here for his story)

Party Time
We threw a combo birthday party for the kids this past weekend, since their birthdays are a week apart. We had a small party at our favorite local pizza place - just family and some close friends. It was fun, the food was great and the kids had a nice time.

Me and my baby boy! This was Mother's Day weekend. 


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