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.

Walking
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!)


Crawling
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!


Formula/Milk
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.


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


Speaking
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)

Weight
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. 

10 things about Tyler lately

In accordance with being back to blogging - here's an update on Tyler. My little boy is getting so big! Tyler is almost 9 months old, and so many things are changing daily for us and him.

• Tyler has a Congenital Heart Defect and had Open Heart Surgery when he was 8 days old on May 24th, 2013. Before May 23rd of last year, I never knew anything about Congenital Heart Defects. By May 24th, we got a crash course in Pediatric Congenital Heart Defects, more specifically, Infra-diaphragmatic TAPVR (Total Anomalous Pulmonary Venous Return). Please GO HERE for Tyler's CHD story. As of Monday 2/3/2014, he is off of his Digoxin heart medication, which was regulating his heart beat and helped it to heal. His cardiologist wanted him off Digoxin for a week before his appointment next week, where he will have an echocardiogram and EKG along with a full checkup; and then return home for 24 hours with a halter monitor which will record all heart activity. If all goes well, he will be off of heart medication (praying forever!!!). There isn't a crystal ball for what the future will hold and we can only pray he never has any other complications from his Heart Defect. The rest of his updates will be less critical the #1

• Tyler is doing great on solid foods. He loves all vegetables & fruits so far, with the exception of peas. Can't say I blame him. He has cereal and a jar of fruit in the morning, then cereal and a jar of vegetables for lunch. Dinner time (6:30) we just moved up to cereal, a full jar of veggies and half jar of fruit. He has a bottle 4x a day - 7am, 11am, 3pm and right before bedtime around 7:30. He is taking less formula to about 20-24 ounces a day now since he's increasing his solid food intake, which is normal.

• Tyler is sleeping 11 hours at night. He goes to sleep at 8pm - the same time as Julianna. They both wake up around 7am... and sleep in the same room. What a pain in the you know what that has been, but they are finally OK sleeping together where one doesn't wake the other up. I'm writing a post about kids sharing their room. It's been challenging.

• Tyler is in 12 month clothes and size 4 diapers. He's so much wider & chunkier than my daughter was at this age. I know they say not to compare, but I love comparing the 2 at each stage of their life to see who was wearing what and what they are doing. He takes 2 naps a day, one around 9:30 to 11am, and the second one around 1:30 to 3pm. He has a slight witching hour some nights around dinner time but not nearly as bad as when he was an infant. 

• He's not crawling yet, but wants to stand up ALL of the time! He is not happy unless he is standing with us holding him. He sits on the floor and plays nicely with his toys, but he really needs attention. He is not like Julianna, where we could leave her on the floor with a toy and she would entertain herself. Tyler will play but then whine for someone to come play with him or hold him. He is sooo very needy. He likes playing on his belly and is just about pushing himself up on his knees and can push himself backwards. He'll be crawling soon.

• He just has his first Gerber Puff and first sip of water out of a sippy cup this week.

• Tyler has become a bigtime belly sleeper. About a month ago, he decided to roll onto his belly in his crib to sleep and hasn't gone back since. I put him on his back, and he can't flip fast enough to his belly. He loves sleeping on his belly! Since he's almost 9 months old, the SIDS risk is almost none or zero. It's fine - and besides, good luck trying to get him not to sleep on his belly all night! He slept on his back through 8 months old. That is still very good.

• He loves playing with light-up toys and toys tat make noise- he also likes turning the toys over to see the underneath, as if he's inspecting it. He also loves peek-a-boo and loves when big sister plays with him. He loves her and watches her every move when she's in the room. She often tries to comfort him with a toy or talking softly to him when he's crying or upset.

• When me or Brian hold Tyler, he often tries to twist and roll off our laps, and then whines & complains. He only wants to stand or play on the floor. I can not wait for him to walk so he can go do his own thing haha! He won't be so needy then! He also gets his hands on everything and anything he can. My hair, my earrings, my glasses, paper, stuff on the fridge, my laptop or phone, anything on the table, my coffee.... etc! I can't drink coffee or eat while holding him because he lunges at everything. It's a 2-handed job holding him. Multi-tasking is not an option.

• Tyler says Mama and Dada. That's about it for talking so far. He does a ton of talking in his own language and it's hysterical. Julianna often says he talks too much, although she talks an awful lot too! Little does she realize! Tyler does know his name and laughs at the dog. He laughs at everything now- it's great!

I just love my little boy so much. It's so very true what they say about mama's and their little boys! I love holding him and nuzzling his fuzzy head. When he looks at me and says "Mama Mama Mama" and gives me a big smile, it melts my heart! Oh how this little boy owns me!
There is a part of me that never wants him to get bigger, but then there is a part of me that wants him to get bigger & more independent. Since I came off of a few bad months, I have been trying to take in each day, almost as if I need to make up the time I blew when I was going through my 'crazy' stage. Go HERE to read about why I was MIA for a while. 

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)

Changes

Hello - it's been a while. Can you say BUSY??
I can't get the time to do anything lately and the days are whizzing by. I promise I will catch up on blogs soon - I haven't gone underground! I forced myself to pick up my camera and take some photos in the last month so I do have some stuff to share at least... and I am working on a "Day in the life" post as well. (Maybe you'll see it by Christmas!)

I go back to work on Monday. {Insert big sad face here}
Tyler is 14 weeks old - but luckily my husband (God bless him!) is taking 'baby bonding' time off from work for 4 weeks to stay home and take care of Tyler so he can be here with us for a little longer. His leave starts Monday. The state of NJ offers baby bonding time for parents - it's paid time off too. One of the benefits of living in NJ.

I will be taking 2 weeks of vacation time once Brian goes back. So all in all, Tyler will have been home with us for 20 weeks total. He will start going to daycare the fist week in October - when he is almost 5 months old. I feel much better about sending him at that age than now.
We are sending him to the same woman that has cared for Julianna since she was 14 weeks old & it will be the 2 of them together with her - that puts me at ease for sure! But is still scares me to let him out of my sight.

If you missed Tyler's story about his Congenital Heart Defect, click HERE. 

It's a strange dynamic. I am kind of happy to be going back to work as that is my "normal" and I will be back to my routine (I have still felt so off kilter because of everything that has happened with Tyler and trying to get life back to normal). I am happy to go back to work but also sad because my time is done with Tyler (aside from the 2 weeks I will have off with him at the end of september).

Another exciting milestone coming up - Julianna starts preschool on September 10th - I am so excited for her! I know she will love it. Every time we drive by the school in the car, she says "There's my school!". We have 'back to school' night in 2 weeks. I will say I'm giddy to get her into school because this is such a special time in her life where she will make new friends, learn new things, experience something else outside of her day to day life!

Here are some pictures from lately...

The community garden 

Community garden with Tyler 

Julianna and Tyler 

 She's such a ham! 

My beautiful belle 

At the community garden

There they are again! 

Potty Training Boot camp

And here we go ...

Potty training has officially {FINALLY} entered the building. High Five! 
Today, Monday, is the day we started potty training cold turkey. Julianna is 3 years and almost 2 months old. We've been talking to her about potty training for a {long} time now. We had her watch the Potty Power DVD, sit on her special potty, told her she could get a sticker or coins when she went peepee (we aren't doing food for bribery & she loves stickers & money haha!), told her only babies wear diapers, told her she is a big girl if she goes on the potty.... tried everything and she still refused to do it.
BUT ... all of this failed... until NOW.

Brian and I talked to Julianna about starting peeing on the potty last week because her daycare provider was going to be on vacation this week, and she's home with me & Tyler all week. So we figured this would be the perfect week to do it! She actually agreed to go along with it - and we've been talking it up for days now. This morning was the time to start.

You know toddlers; everything has to be ON THEIR TERMS. I never truly understood this until I had a 2 year old. You can't force a 2 (or 3) year old to do anything they don't want to do, especially potty training. Brian and I agreed we would not force Julianna to potty train and traumatize her. We also agreed we would not use pull ups... we were choosing to go right to underpants. If she were younger then we might choose the 'pull-up' route. But she is perfectly capable physically of using underpants & going on the potty on her own. She is stuck on the 'mental' aspect of this whole thing. We always said that she would go when she was ready. And she's ready now - she told us she is.

I am keeping a journal all day today for fun ... we'll see how this goes. I'm doing this on my iPhone to make it easier.

10am
Our progress so far: I put Julianna in 'underpants' (that's what she calls them, so we're going with that term!) after she got up this morning. I had her sit on the potty 4x so far. She told me 3x she did not have to go & didn't. She's also refusing to go sit on it if she feels she doesn't have to go. HELLO CAN YOU SAY CONTROL!??! Seems like she's having an issue letting herself go peepee on the potty. That has to be a hard line to cross mentally when you're so used to going in a diaper!

Then, she was sitting on the floor playing and I noticed her shorts were wet. She went & didn't tell me. Accident #1 of many more to come (I guess it doesn't bother her enough yet to tell me and she was ok with sitting in her wetness- grrrr). I calmly changed her, and told her it was OK and not a big deal... and I sat her on the potty right on the potty after that and .... BINGO! She finally went pee pee on the potty! She was SO PROUD of herself and once she was done, gave me a big hug and picked out a nice sticker to put on her potty chart on the wall in the bathroom.

11am
I had her sit on the potty again - and still nothing. I feel like she's holding it. It might take some time to get over that fear of going on the toilet. I can see I'm going to be trapped in my house with her trying to pee for the rest of my life.

Did I mention I'm taking care of a 9 week old during all of this too?! Ha! Can you say "multi-tasking". I was sitting on side of the tub feeding Tyler & burping him earlier when Julianna was sitting on the potty! Thank goodness he's on a good eating/sleeping schedule so I don't have to worry about him too much today while I go full-on potty power with the girl!

11:30am
Tried to squeeze in a shower. NEED MORE COFFEE. This is stressful.

12pm
Time to feed Tyler. Julianna is now refusing to go on the potty or go near it & she's whining and crying for no reason. I think the 'fun' of it all has gone out the window. Well guess what little girl, it's gone out the window for me too. The beast is coming out. She's screaming & crying she doesn't want to go on the potty and to put a diaper on her. Kill me now. I'm trying to stay calm. I am trying everything to get her to go sit on it... even bribery... no go. Time to break out the potty power DVD I think.
The good news is she's still dry. The bad news is she hasn't peed in over 2 hours. I feel a big accident coming soon, probably just as I'm feeding Tyler. Oh well. She can sit in it & just be wet, I'm ready to give up already. She can go to her senior prom in diapers for all I care.

12:20
She went pee pee in her shorts as I thought she would. And she could care less. I feel a horrible FAIL coming on for today. My emotions are so up & down about this! Still need to feed poor Tyler.

12:30
Success! She sat on the potty after her 2nd accident and went pee pee! She yelled "I did it!" - I gave her a high five, a big hug, a sticker for her chart and 5 coins ( did I mention she loves money!)

She was very proud of herself again! We called daddy at work to tell him the good news, she loved that part! The only bad thing is she peed onto her special pottery barn chair... So I had to take off the cover & wash it. And since I was rushing & didn't follow instructions, I ruined the embroidery. Big time Bummer! Maybe this potty training thing will work out. I have to go buy more underpants for her pronto! 

2pm 

Still hasn't gone yet and refusing to sit on potty again. Need more coffee. 

2:30

MAJOR Meltdown because I asked her to try & go pee pee. No go. Nap is needed clearly. I put a waterproof pad on her bed for her nap since she now doesn't want a diaper for nap. Totally playing with fire no doubt. 

3pm 

Still no nap and I had to beg for 20 minutes but she finally went pee pee on the potty! Success again ... Sort of. She gets so excited when she goes that I have to assume she will want to do this on her own at some point so I don't have to spend the next 5 months begging and bribing. 

4:30

Both kids are napping. Praise the good Lord. Let's just hope Julianna doesn't pee all over herself & baby giraffe (her favorite stuffed animal!) before she can get to the potty after she wakes from her nap. I did get to spend some quality time playing with Tyler after Julianna fell asleep! Look at that smile - I love this boy! 

9:20pm
I wasn't able to write much more the rest of tonight because it got pretty busy with both kids, my girlfriend stopping by to visit, dinner and my husband getting home from work.
Julianna had another accident but ended up going pee pee on the potty 3 more times and went poop one of those times. (I'm sure you are just jumping for joy at poop & pee talk but that's my miserable little life now).

Overall I think the first day of potty training effort was a success, however Julianna fought me every time I asked her if she had to go. I know other parents have said they happily take their toddler to the potty every 30 minutes to prevent accidents, but that's just not happening here. She is not happily going anywhere. She is too resistant and I have to beg her to go near the potty. I am praying this changes or I might run from home away screaming soon. I do however think she is ready because she gets so excited when she does finally go, but I think it's a "control" struggle for her (or so I've read) to fight me on this stuff.
I'm exhausted now and really can't think about doing this again tomorrow and the day after that..... and so on. I feel like I'm going to be trapped in the house for a long time until this takes effect, and I don't do well sitting in the house. I'm just not "that" mom that can sit home all day and play happy games and build crafty fun things out of sticks, glue and paper towel rolls. I wish I could be. Forgive me; it's late and I'm in a hormonal mood & being brutally honest. Let's hope day 2 goes better.

For anyone interested,
Here is the potty seat we are using for the toilet;

We decided to use a seat that fits on the toilet and not a separate potty that she sits on. We only have one bathroom in our house and this is the way we needed to do it... and it's way less clean up for mommy & daddy too. Not to mention since she's older, we felt she was able to handle climbing up on a stool and sitting on the potty seat.

Here's Julianna's special nap area for today only since she peed on her chair and I told her she could lay on the cushions until the cover was washed ... 

How's Tyler doing now? {Heart update}

Tyler is 6 (almost 7) weeks old!

Despite Tyler's heart surgery and being in the hospital for 6 days, he has managed to hit all his milestones. (In case you missed it, HERE is my post about his open heart surgery!)

These are some of his '6 week' milestones

He was 9'13 lbs and 21 inches long when we went to the doctor this past Thursday. His birth weight was 6'15 (19.5 inches long), so he has been growing like a champ.

He is taking about 4 oz of formula every 3 hours. At night, his 'bedtime' is 9pm. We feed him at 9... wake him at 10:30 for a dreamfeed... then we let him sleep until he wakes up or we get him up at 6am to eat... then back to bed until 9am which is what I like to call his morning wake up time officially. Julianna slept through the night by 7 weeks (11-6), and he's following in her footsteps.

In the last week, Tyler is really alert & paying attention to everything around him. He is batting at toys and really reaching out for things with his hands. He also gave us a smile a few times! He is on a very predictable schedule (very good for us too!). I'm still trying to get his naps right during the day. He is a light sleeper for some naps and he has a hard time napping in his crib sometimes for whatever reason. I know this will straighten itself out, but for now, it's a lot of work for me. Thank goodness he sleeps better at night! He also naps well if we are out doing things... just not napping well at home. ha!

Julianna is interacting with Tyler much more in the last week. She likes to give him his binky and  'check' on him to make sure he's ok. She is slowly warming up to him now that she knows he's not going anywhere. She includes him when she's talking about "us" as a family - which is very cute to hear her talk about him.

Tyler's Health update
So originally the plan was to not go back to the cardiologist until December. That changed almost immediately.

Here's what we've been through since he was discharged from the hospital 4 weeks ago...

• Initial cardiologist follow up appointment (3 hours because they do an echocardiogram each time & EKG, checkup, etc...) 
• Initial pediatrician follow up appointment & 2 week checkup (he gained weight- they were very happy!) 
• His arms & legs started quivering when he got hungry, excited, etc... I called the pediatrician, who then had me bring him in. Every little thing makes you worry when you have a child that has been through such major surgery & has a congenital heart defect. 
• The pediatrician ordered bloodwork & sent me to see the neurologist (immediately) later that afternoon. 
• The neurologist did some basic tests & said the same thing the pediatrician did - The random tremors were just a normal 'baby' thing they called baby quivers. It was not seizures or brain related issues from the surgery. They explained that if you are on bypass, you can have brain related issues (seizures,etc) apparently. However, to be 100% certain, the neurologist ordered more bloodwork in addition to what the pediatrician asked for. 
• I then drove from the neuro's office directly to the hospital where Tyler was born to get the bloodwork done (the children's hospital is there - and so is his cardiologist) - They wanted him to go to the hospital because they needed the results ASAP... and it was a better equipped facility than a "blood lab" to get this done. It took an hour of pure torture to get the blood from Tyler because his veins were thin from surgery still. The ped, neuro and bloodwork were all in the same day. Poor kid. It was a LONG day for both of us. 
• The bloodwork came back fine ... but the cardiologist called me to say she wanted to see Tyler for a follow up to make sure nothing else was going on. 
• The day that I brought Tyler for his follow up with the cardiologist, he had blotchy skin and was kind of lethagic with his eating. Panic set in with me. Of course right away I think "Heart issue!" because every silly symptom now makes me paranoid. But the doctor said to never feel like I'm just being crazy thinking something is wrong - they all said make sure you call us even if you think it's nothing. Better to be safe than sorry. Hell yes.  
• Another 3 hour appointment at the cardiologist. She noticed he had an "extra heart beat" or rapid beat every so often during the EKG and Echocardiogram. She was concerned so she sent him home with an EKG halter to wear for 24 hours. 
• We returned to cardiologist the next day to have them remove the EKG leads, and read it on the computer. The cardiologist ordered more bloodwork (extra heartbeat can be caused by many things & they like to rule out everything else first). She called me that night saying the results came back OK except he is slightly anemic. Once they read the EKG, it also showed he had this 'extra' beat about 2% of the time... very typical for a baby who has had heart surgery like this. She said we need to watch it and he may need medication later on but she would consult with the other doctors there and let me know. 
• Because of the anemia, I had to then follow up with the pediatrician a few days later. She said the low anemia is most likely something called "Nader" that all babies go through - they all get anemic at this point in their lives. The cardiologist thought the same thing but wanted to send me to the pediatrician to confirm that's all it was. 
• The pediatrician ordered MORE bloodwork again. Poor Tyler. He just HATES getting his blood drawn. Who doesn't. 
• This time it came back with some low levels of something (I can't recall the name) that showed he might be fighting off an infection or virus of some kind. She called me the next day and said I need to go to the ER to get his levels taken again because if it was lower, they would need to admit him because he would be too weak to fight off anything. REALLY??? Come on. Enough already. 
• Tyler did not have a fever, so it was most likely not an infection... but we had to be 100% sure. At this point, I am SOOO sick of hospitals, doctors offices, copays & bloodwork. ARRGGHH!!!!! I know it's for his own good, and would never blow it off, but it's frustrating to say the least. With that said, his docs have all done a phenomenal job of following every symptom and making sure everything is looked at- you can't afford to overlook one thing with his condition.
• So... off we went to the ER. Brian met me there since Julianna was home with me - no way could I deal with her in the ER and Tyler alone. The did an echo & EKG there... & more bloodwork. Our cardiologist was not on call, but someone else that works with her looked at Tyler for us. She said Tyler had to be put on "Digoxin" starting now - for his 'extra' rapid heartbeat - I think it's called Chronic Atrial Fibrillation.
• Tyler was released from the ER without any issue other than the fact he has now started the Digoxin to help regulate his rapid heart beat. They are confident he will be off of it within a year... it's something that he will grow out of (caused from the surgery- it's a very typical side effect) 
• He has another follow up appointment with the cardiologist this coming up Monday (today) to get an EKG and make sure all is OK after being on the medication all weekend. He seems kind of irratible when I'm feeding him and he has spit up pretty bad a few times since being on this medication - those are some of the side effects, so I'll need to talk to the cardiologist about this when I go there. Then there will be another 2 week follow up with the her after that.... and so on and so on... to be continued... 

It would be REALLY nice to go a week without a doctor or hospital visit and/or bloodwork.  

These visits are mentally & physically draining between the driving, the time, the planning for both kids, the copays & the uncertainty every time I go and find out something new is wrong, and being shipped off to another doctor right away. I haven't once asked "Why us?" or "Why Tyler" during this whole ordeal - you can't think that way and you certainly can never plan for something like this in your entire life. However, I just want everything to settle down & be normal. I want Tyler to be a happy normal baby. 

Having a child that has been through what he's been through already in his life; you worry even more so about his every day health. Even with a 'regular' baby, we all tend to 'over worry' as parents. It's just normal. Try having a baby that has congenital heart defect and had open heart surgery... you worry about every breath, every time his skin gets blotchy, his physical & mental development, his future quality of life, the unexpected, and the list goes on.... and on...
I sometimes watch him breathe, and start making myself nuts thinking "Is he breathing too fast? Is his skin turning blue?"... your mind plays bad tricks on you... and then you snap out of it & realize he is just fine.

Here are some pictures I took of Tyler couple weeks ago - 

Hint... they are going on his birth announcement, which I already ordered & stuffed them in the envelopes... but they've been sitting on a table for about a week now! I have to find the time to address them... *SIGH* !!