March 29, 2012, that is the surgery date. Until then we are going to have A LOT of fun and try to stay healthy.

ER

Yes, unfortunately we had to take Lucas to the ER last night. He has had several colds (feels like a few a month) and most of them at some point turn into a croupy cough, which we are getting pretty used to. When Peter took him to daycare yesterday he was totally fine not even a runny nose. But at some point during the day he started getting a cough. He coughed so hard during his nap time that he woke up to throw up...poor buddy.

By the time I had gotten home from work he was really hoarse and coughing very frequently and he definitely was not himself. Peter gave him a steamy shower and I gave him some motrin to help with the inflammation and we got him to bed. About an hour after he went down, I went in because he was coughing so much. When I got in his room he was sitting up gasping for air, when I picked him up he puked all over me and his room. He was really struggling to breathe. I was so scared I almost called the ambulance (not like me). I got him in the steamy shower again to get him clean and most importantly to help his airway. In the shower he was still coughing a lot and working pretty hard. At this time we loaded Claire in her car seat and we were ready to go just in case.

When I got him out of the shower and warmed up, he literally passed out in our bed. We were watching him very closely and he seemed to be working pretty hard to breathe. After a bit he started retracting and using his accessory muscles and he couldn't settle down to fully fall asleep. It was time to go. He was not only having a horrible barking cough but he had inspiratory stridor and that I am not ok with.

Being that I am an ER nurse I see parents bring there kids in so often for simple things that really could wait until morning. I told myself I would never be a mom to bring a sleeping child to be seen in the ER, but by the time we got to the ER Lucas was sound asleep in his car seat...I was that mom.

I ran in to ask one of our docs what he thought and he told me to get him in there because it would probably get worse as the night went on and he told me not to second guess myself. I am so glad I did take him because when we got there he started having a horrible coughing spell and was sort of dusky and lethargic. UGH. He got a nebulized racemic epinepherine treatment, steroids, and some cough medicine and within thirty minutes he literally had flipped a 180. He started telling everyone that we are going to disneyland soon and how we are headed to the beach in a few days. Thank the Lord.

On the way to the ER Peter and I both saw an amazing shooting star right in front of us. Amazing! I felt a little bit calmer after that. We got home really late but we all got a bit of sleep. Lucas is still coughing a lot and keeps throwing up his steroids (I don't blame him it is disgusting). But hopefully, all fingers crossed, tonight is much better.

Lucas

Octobr 2011
June 2011

Can you believe what has happened in just a few months? My little love is turning into a little boy. I can't believe the growth when I look back at pictures from the beginning of Summer. Raising a boy is quite interesting, right? Never a dull moment! There is nothing starkly different you do with a boy and a girl, but they are so inherently different. Lucas is such a boy it makes me laugh sometimes. Something like a leaf turns into an airplane, and a rock is suddenly a fire truck of police car...and he just can't help but jump/fly from every curb and step. Ha! He keeps us on our toes every day and has made us grow in ways we didn't know we could, but he is absolutely the best.

The call....

Ugg, yes we got the call from Stanford yesterday to schedule Lucas' cath and surgery. How are we already to this point, I just can't believe how fast time has flown. Which scares me because I know time will keep chugging along just as quickly and we'll be heading to Palo Alto for our little guy's surgery before we can blink. Ugh.

Peter is out of town this week so we will sit down and discuss dates and times when he gets home. We are shooting for late Feb/March. Hopefully to coincide with Spring break so we can have some help with Claire.

The potential surgery date means that Lucas (and Claire by default) will have to not be in day care early next year in order to keep him germ free for surgery. Any tips, advice from other parents who have gone through this? Hard to isolate a 2.5 year old, but I know it is what we'll have to do.

Eight months

Happy little one!
Look mom, I am standing with no hands.

Claire's personality is just blossoming these days. So fun, but as she is getting more 'independent' we are beginning to feel like we don't have a baby any more. I remember this feeling with Lucas too. She is cruising around the house, holding onto whatever will support her. And more and more these days she will let go.

She is cutting four teeth simultaneously, the top middle two have popped through and two more are close behind.

As much as I have tried otherwise :), "dadda" is her first word. Lucas and I are trying to teach her "momma" but she just says "dadda" in reply I think that is her word for both of us. It is actually working out in my favor though because when she wakes up in the middle of the night, she says "dadda daddda" and I lean over and tell Peter, 'she is calling you, you better go get her' and he does. LOVE IT, it gives me about 10 more seconds to snooze before feeding her, hey I will take all the seconds I can get. Love our little lady!!

Twins?

I always ask Peter how it feels to have a twin that is 26 years younger than you? Seriously, these two are identical sometimes. I just happen to be sorting some pictures and came across this one of the boys making homemade pizza the other night.

The dreaded words....

On Friday both of the kids had appointments. I will start with Claire. She had her next set of immunizations. She is growing like a weed. Weighing in at 21 pounds 4 ounces still in the 90th percentile. I didn't catch her height because she was trying to roll off the table, but her head and height are 75th percentile. She is doing great. She got four immunizations and is doing great. She is a little trooper.

Onto Lucas, who's cardiology appointment was actually first in the day. Lucas was such a big boy, he always is so interactive and talkative to his friends at the cardiology office. He is quite the ham.

First he got measured and weighed, then he was great for his BP (90/60) and pulse ox 86% and heart rate of 102. Right before the BP cuff was placed on his arm, he bravely looked at me and said "no owies Mommy?" I said "Nope" and he let them proceed. When Dr. Wright came in the room he just smiled, he said "gosh he is getting to be such a big and handsome boy."

He listened to his lungs and heart which he said sounded great, and then he said the dreaded words which hit me like a ton of bricks falling from the sky...."we should probably schedule his next surgery." It was at that moment I felt like I got hit with a Mack Truck. I TOTALLY wasn't expecting that. He said on their scale he weighs 15kg (33lbs) and he is doing so well we should get it scheduled. He said no emergent rush, but he is doing very well and he is right where we need him to be.

I couldn't help the sudden tears falling down my face. I have to face my denial and come to terms with the fact that he needs this surgery and it will be best for him. My dream is that after the surgery he will be able to run around and chase his friends without having so stop because he is out of breath. Or he will be able to run from one side of the house to another without panting. In our hearts we know it is what he needs and deserves but there is nothing harder to me right now then imagining Lucas having to have that surgery.

Peter and I knew it was in our radar but were thinking of more in the realm of next Summer or Fall. So, after the doctor said that we should start thinking about it I was trying to internally console myself with the idea that we had 6-10 months before we really had to confront reality of Lucas having heart surgery then he says..."well if you would like we could wait until right after the holidays"....WHAT????

So, this is where we sit. We are now waiting for THE CALL from Stanford. I had NO idea that we would be talking about surgery so soon. Lucas is full of life and trust me A LOT of tenacity...it is hard to fathom he actually needs this.

In life, at least my life, I find it so easy to use denial as a coping mechanism. Not that I am in denial that he needs it, I just deny myself from thinking about it often. It is how I keep positive and happy for him. I want to enjoy life, not dwell on the scary stuff. But now that it is staring us in the face. I am scared.. I am nervous... and at this point I am still choosing to stay happy for Lucas. He will do great. I just can't believe it is already time to start planning for his Fontan.

So now we wait for the call to get him scheduled....

Halloween 2011

We had a nice Halloween. As is our tradition, we made Butternut squash soup and then went trick or treating in our neighborhood. Lucas was a Duck and Claire was a chick. Lucas was much better at trick or treating this year, and he really liked handing out candy too. Peter wasn't that excited about Lucas' costume, he wanted him to be something more manly:). Ok, he is only 2.5, right? I know I won't get to dress him for many more years.. so I didn't look too hard for another option. Loved our little birds!

Two and a Half

Yes, it is true! On the 23rd of October Lucas turned 2.5 years old. I can't believe our little man is that old. We find ourselves talking about pre-school all the time.. how can that be? He is the sweetest little guy. Unfortunately, he has been sick a lot of the past six months due to me going back to work and subsequently he and his sister being in day care. We have battled numerous ear infections, coughs, and a few bouts of emesis. Hopefully we can get through the winter without too many more illnesses. What Lucas is up to these days.
-Loving his sister
-Wears mostly 3T clothes still in some 2T
-Loves helping around the house (especially if it is bossing his sister around)
-Can count to 15
-Sings multiple songs his favorite right now is Barney "I Love You" and He loves the song "chillin on a dirt road" by Jason Aldene.
-Loves anything trucks or airplanes
-Loves books, we can't read to him enough. We are thinking about starting sight words with him soon, because he tells us he wants to read.
-He loves to help in the kitchen.. the pictures below are from when he made cupcakes for his friends in day care for halloween. He really did do most of the work, I just directed him, cracked the eggs, and of course dealt with the hot oven. He is quite the master chef!!



Claire looks up to him and wants to do everything he does.