Saturday, September 28, 2013

Boardwalk - Part 2 Pictures

I took too many pictures at the boardwalk and I needed to break them into 2 parts. First part was HERE. That day was perfect. Perfect weather. Perfect family day. The type of day you wish would never end. We didn't go on vacation this year, so I cherished the days we got to spend the day doing something so great! Our vacation this year was having Tyler and spending weekends on our boat. (Real Vacation - Next year! I want to go to Ocean City Maryland again!)

Julianna on the motorcycle ride

Eating ice-cream on the boardwalk is the best 

Me and my boy (in hindsight, I probably shouldn't have blinded him by facing the sun)

Julianna enjoyed collecting rocks and shells on the beach 

Cheesy toothy smile 

She put too much sand in the bottle and tried to empty some out... and out came her rocks

 I love my little girl 

My pretty girl

Had to show this .... Naptime on the boat... 
Brian and I got to relax and enjoy some time while anchored... while the kiddies slept soundly. 
(No life jackets required while boat isn't underway)

Thursday, September 26, 2013

Tyler's health at 4 months old (19 weeks)

Our little boy Tyler is 4 months and a week old (I think he's 19 weeks?)
When I hold him and snuggle with his little fuzzy perfect head, I just can't believe he had open heart surgery 18 weeks ago. Six days in the hospital with all kinds of tubes sticking out of him, breathing machines, feeding tube, C-Pap machine, wires & other horrible things. Six very long days. Sometimes I close my eyes and and imagine that never happened... but then I am reminded of the harsh reality of his condition when I change his diaper or shirt, and see his scar. His scar is part of him and it's a beautifully healed scar at that. But it's a reminder every day how much this little beautiful baby boy has been through in his short life already. It's a reminder of how blessed we are to have our little by in our life and that he is meant for big things in this world. It's a reminder that we have a lifetime of worry ahead of us.... worry about his future and 'what' could go wrong, or maybe nothing will ever go wrong with his repair and heart growth. Worry about the unknown.

Fear sometimes consumes me so much that I feel paralyzed. Fear takes over and looms over me like a dark cloud some days. The fear of losing Tyler. The fear of losing him to a CHD related sickness. The fear of never seeing his beautiful little perfect face again.
All parents have fears. This I know. When your child has a lifelong condition, it makes the fear that much worse. I hope over time it subsides, but maybe it won't. It's not the kind of fear that stops me from leaving the house or doing what I want to do, but it sure consumes my thoughts and keeps me up some nights needlessly. It makes me never want to let him out of my sight EVER.

This feeling is always in the back of my mind every day. So if you take other 'normal daily' stress and then combine it with the "Tyler" aspect, it makes my mind overload with anxiety some days. Some days I feel like the littlest thing is going to put me over the top and I am going to snap so easily. I guess there is only so much a person can handle at once, then something has to give. Sometimes it's in the form of me snapping at my daughter or my husband, crying, over-eating, or just not talking at all... and waiting for it to pass. On an ironic note, I don't let small things bother me (like I used to) since Tyler's surgery. I also feel like I'm more compassionate to other people's needs and try to put myself in their shoes now before being so quick to judge. I try not to be negative or try to stay away from that when I have control over it.

I am off (again) from work until October 3rd, and he will then start full time daycare on Monday 10/7. Tyler will be almost 5 months old when he starts daycare... and I am truly going to be devastated to let go of him and send him away from Mama & Daddy. Luckily he will be going to the same woman that watches Julianna right now at her house, whom we love & trust completely. In the meantime, I'll enjoy these last few days off with him.

In other news...
Tyler had his 4 month 'well visit' to the pediatrician last week and did very well. He took all of his vaccines like a pro with just a little crying. He is 14.4 lbs and 24.5 inches tall. He is about 20% in weight and 12% in height. A little on the small side but making good progress overall - the doctor is thrilled with how much weight he has gained since his last appointment!

Some milestones Tyler has reached at 4 months
(My reason for milestones - I am so happy I kept track of Julianna's milestones in my blog because I truly enjoy looking back now to see what she was doing at this point in her life, and I do plan on printing out her first year and also his) 

  • Self-entertaining himself. I can lay him down and he keeps busy by holding a toy, looking at his mobile or eating his hands. 
  • Sleeps 10 hours at night
  • Takes about 6 oz of formula every 3.5 hours. Not in a hurry to try solids - maybe in the next week or so. 
  • Takes 3 solid naps of about 1.5-2 hours each. 
  • He has full on conversations and laughing - He talks A LOT! 
  • Does good with tummy time but doesn't love it. Rolls from front to back (but gets very confused! why it happened!) 
  • Holds his head up very strong and looks around all over the place. 
  • Likes peekaboo and laughs at me - he just loves his mama and daddy! He is the happiest being in our arms. 
  • Faces forward in the Beco carrier (Love that thing!!) 
  • Loves sitting on our lap and looking around - the best thing ever for him! 

Here are some random iPhone pictures from the last few weeks ....

Wagon ride that Julianna loved going on! (She's in the back) 

I feel that I need to mention Daddy picked out her 'matching' socks. 

One last plug for our CHD Coalition Walk - We are walking for Tyler and all the Congenital Heart Defect babies just like him this coming up Sunday... We are walking for CHD research. One in every 120 children are born with some form of CHD and yet there is no early detection for this or known cause yet. This needs to change. Please help us by donating IF you can. For those of you who already did, thank you from the bottom of Tyler's heart! No donation is too small. God bless! (Click below for details)

Monday, September 23, 2013

The New Jersey Shore - Boardwalk for the day

This summer has been a wacky one. I had so many plans to do things while off on maternity leave, in my head ... and never really got to do much of anything I had hoped. I planned to go see and spend time with so many friends, most of which never panned out. It seemed like I spent a lot of our summer driving to doctor appointments, calling the insurance company, dealing with bad hormonal baby blues days, dealing with my 'maternity leave' that had paperwork issues the entire time and required me to make hours of phone calls... and did I mention driving to doctor appointments? Days turned into weeks.... weeks turned into... the entire summer gone! It was only towards the end of my leave that I truly got to enjoy a full day with my son ... and/or my daughter. I barely even got to see any friends that I had hoped to spend time with this summer. I still have some friends that have not even met Tyler yet. We normally go down to the NJ Shore each summer for a few day trips... and we didn't even make it down there all summer!

Once I went back to work, it was Brian's turn to take off from work (NJ State baby bonding time) with Tyler for 4 weeks. I decided to take a day off from work one day so we could go down to the shore for the day. We went to Jenkinson's Boardwalk at Point Pleasant beach about an hour & 1/2 away. (It's not the area called "Seaside" that recently had that horrible fire; that's 30 minutes south of Point Pleasant). It was 70 degrees and sunny - we couldn't have asked for a more beautiful day. And since we went in the "off season" after labor day, parking was cheap and we parked right next to the boardwalk. We walked the boardwalk, had a nice lunch, went to the Aquarium (they have one right on the boardwalk - how cool!), of course Julianna had a blast riding all of the rides, and then we got ice cream... and of course we HAD to go on the beach. Julianna collected rocks & shells, put them in a bottle, and we brought them home. We washed the rocks off and Julianna put them in our fish tank for "Mo" & "Doc", our huge goldfish.

Before the pictures from the boardwalk -
I would like to ask you to click HERE and go to my last post that talks about our walk for the "CHD Coalition" (Congenital Heart Defect Coalition). As you know, Tyler was born with a congenital heart defect and we are raising money for CHD research and detection. 

This is a typical house on the beach by Point Pleasant. They were one of the towns that was hit by Hurricane Sandy, although there were areas hit much harder than them. People are still rebuilding everywhere. Let's pray there isn't another hurricane here this year (crossing fingers!). 

This whole area at the Jenkinson's Inlet was rebuilt after Hurricane Sandy. We were here last summer and I recall the inlet sitting area being much larger.... with no chain link. 

Looking out at the inlet. 

This is how we roll. 

 The penguins were Julianna's favorite! (Iphone picture) 

At the aquarium 

Selfie with Tyler!

Our girl had such a great day - she couldn't get enough of the rides! 

Julianna loved the rides- she loved being an airplane pilot! 

Loves the swings! 

Waiting on line to get on a ride - SO excited! 

She already loves super fast spinning rides with Daddy - 
I'll stay on the sidelines and take pictures thank you very much! 

Julianna loves the rides! Have I mentioned that? 

The kid's Choo Choo Train on the boardwalk! 

Wednesday, September 18, 2013

Sunflowers and other stuff

Before I show & tell sunflowers... I need to talk some Congenital Heart Defect stuff.

As you know (or may not know), our son Tyler was born with a Congenital Heart Defect called Infra-diaphragmatic TAPVR. Before Tyler was born, I had never given heart defects a thought. I really didn't know much about it truthfully and never knew anyone born with a heart defect. 
Every since Tyler's diagnosis with his CHD (and open heart surgery) 8 days after he was born, our world as we knew it changed forever. With that change came educating ourselves about his heart defect and what his (our) future would hold.  
The truth is, we don't know what the future holds for him and his little precious heart. We take every day as it comes. We don't know if he will need future surgeries. We don't know if he will have any issues playing sports or doing normal kid things. We are told he should be OK, but there are of course no guarantees. Yes he is repaired, but there are still things that need to be watched for the rest of his life. Scary not knowing, right? 
(p.s. in case you missed Tyler's story - Click Here

Here's what we do know. 
1 in 110 babies are born with a heart defect making it the number #1 birth defect.
CHDs are the #1 cause of death of children under the age of 2.
There are more than 35 types of CHDs.
CHDs are problems with the heart’s structure that are present at birth.
The complexity of some of these heart defects can require long hospital stays and multiple surgeries.

One of the most shocking things we learned was - There is no known cause for Heart Defects. There is still A TON of unknown. When we first heard this, I thought "How can this be?"
So this brings me to WHY we are involved with this CHD Walk for the CHD Coalition of New Jersey. The more money we can raise for the CHD Coalition, the faster we can find out how and why CHDs happen, and possibly how they can be prevented (Imagine that?!). This money for research can help make Tyler's future better, and all future little heart babies like him. This is beyond important to me. To us. To Tyler's future. 

Please don't feel obligated to donate, but we sure would appreciate it if you could - even a dollar makes a difference! 

And now... 
The Sunflowers.
A local farm by us had amazing sunflower tours this month. We took a hayride out to their ginormous field of sunflowers - and took pictures and enjoyed the beautiful evening. I have been trying to bring my camera with me more often lately - here are some of my pictures.

Julianna was the most excited about getting a piece of watermelon! 


Saturday, September 7, 2013

day in my life

A couple weeks ago, I had Julianna home with me and Tyler... It was a rainy & cruddy day, so I decided to do a "Day in the life" thing for my blog. I kept my camera out on the table and took pictures all day. I don't think I got anything amazing out of it - but it was fun and I got to snap away all day and use my mind for something other than calculating formula ounces.

Here's a day in my life...

It rained. 

She made squinchy face. 

I made French Toast. 

She ate French Toast and watched Octonauts. (Don't judge!) 

I snuck a quicky photo shoot in and they posed for me! 

She gave me crazy eyes. 

She said Baby Giraffe HAD to have his picture taken because he likes posing. 

She got really tired. Modeling is tough. 

He smiled all day - except when I picked up my camera. No go on the smily shots.  

Daddy came home and took over so I could get a break. 

That's about it - not too exciting!
Here are a few that I liked but didn't get a chance to watermark & resize.

Checking on her brother to see if he needs his "Pinky" (that's what she calls his pacifier)

So serious. 

So serious too. 

She is really starting to love her little brother. It warms my heart so much! 


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