Moms Night Out, Baptism and a Movie

This weekend has already flown by and I'm so excited that tomorrow is Memorial Day! On Saturday, Owen and I went to watch Gigi get Baptized. It seems like just yesterday she was pouring syrup on my kitchen floor and hiding on the shelves at the Dollar Store. We're so proud of you Gigi monster!! Kamryn was still feeling pretty crummy and was sad to miss the baptism, so Carson stayed home with her.


In the evening, it was time for our 3rd Heart Mom's night out. I always have such a great time with these ladies and they "get it". We try not to talk only about medical mumbo jumbo, so we talked about which docs were hotter than the others. Good times. Lots of laughs. I'm just saying.. we get each other. We ate at Postino's winebar and I am so excited they are opening up a new one on the East side. The atmosphere and food was fantastic! Next month.. casino night!We just got home from taking the kids to Kung Fu Panda 2! It was really great and the kids LOVED it! Owen decided half way through that he wanted a "hambuburger". My boy and his crazy cravings.

Tomorrow is Memorial Day. We have a fun day planned.. assuming everyone wakes up healthy.

School is Out!

It has been a brutal week for this Mama. It turns out I had the same nasty bug that Owen just got over and let me just tell you... it's terrible! I feel awful that Owen had it for 10 days and not knowing the extent of crummyness he felt. I feel even worse now that Kamryn is fighting it off today. Now that I am back on my feet, I am disinfecting my entire house!

On a much more exiting note.. School is out for summer!!! Can I get a WAHOO!!! We are so excited to have Kamryn home for the entire summer to play. Day one of summer break got off to a rough start when both kiddos decided that a 6am Mommy wake-up call was in store. Then Kamryn started feeling crummy. Tuesday we will officially start celebrating!

Owen and I have been doing a lot of this all week...
There is nothing thrilling on that tv, just PBS kids and Netflix reruns of Caillou, SuperWhy and Word World. He's actually not a huge tv watcher, but this week was a special treat, so I could rest.

Owen is in a very demanding stage. He wants what he wants and he wants it now! It's not working out too well in his favor, but time will convince him of that. His language has totally exploded and he's finally talking in sentences.. real sentences!

Owen is also walking all over like he has been for years! He still has an old main gait.. I have a video, it's just taking years to upload. I suppose strength and practice will improve his strut.

As far as eating is concerned.. wow! He wants food 24/7 and he never stops eating! He must be growing! I still tube feed him all day.. every 30 minutes.. but he wants the oral stimulation as well. Awesome for practicing his swallow.. if he ever decides that is what he is going to do with his food. I am thrilled that he is showing the desire to eat so much. It's great!!

We have a relaxing Memorial weekend planned and can't wait to get it started! It's always fun to have Daddy all to ourselves for three whole days in a row! We tried to plan a little Staycation for the three day weekend, but decided to wait until Father's Day/our 12 yr Anniversary/my birthday to do it! There are some amazing resorts in the desert and they have fun little waterparks for hotel guests, cabanas by the pool, it's going to be pretty great!!

Have a great Memorial day, be safe!

Cardiology

We had an early morning appointment with Cardiology today and both of my kiddos were getting a full workup. I wanted to make sure Kamryn's heart is perfect so I never have to wonder... and my mind was put to ease. Her heart is wonderful!

During Kamryn's echo, we were hanging out watching Harry Potter. Then Owen had his turn and chowed down on pretzels while getting his echo done. My kids are SO easy!!! I started feeling sick to my stomach when the echo tech seemed like she was concentrating on Owen's Tricuspid Valve.

We headed back into our room and waited for Dr Stock. He started by saying "Kamryn's heart is great! I have no concerns!" Then came the "How's Owen been doing?" You don't want that question from the get-go. Besides the crummy stomach bug that wiped him out for over 10 days, he has been doing great!

He has been eating .. a ton! If he would swallow the amount of food that goes into his mouth, I wouldn't use his gtube all day. He eats that much! He wakes up asking to eat. He always asks for random foods.. a hamburger, ice cream cone, peanuts, carrots, cheetos, Diet Dr Pepper, almonds, and it's always at random times throughout the day. It's constant and I am always scooping his cheek out so that he can stuff more food in. It's practice.. and I figure he has to feel great to have such a monsterous appetite, especially with me feeding him 1300 calories through his tube during the day.

Owen is also walking more, playing a ton, taking a small afternoon nap, wants to go shopping and get outta the house, ect. His oxygen saturations have been okay on a liter of oxygen and he turns blue less often (than before his Tricuspid Valve repair in February).

Dr Stock said his Tricuspid Valve, that we just fixed, is leaking more. UGH. His liver is down, which he said wasn't good, and I don't understand the whole liver part of it anyway. His fraction gradient, the pressures backing up in the Right Atrium were lower than his last echo, which can be positive, but we just don't know. His murmur was much louder this time around, which indicates more regurge into the Right Atrium.

Dr Stock said we won't know anything for sure until his cath and MRI on July 28th. His Tricuspid valve is still tight, but the amount of backflow is up. We don't know what Dr Hanley will want to do, but I am going to be so heartbroken if we have to put Owen through another TV surgery to replace his valve. Heartbroken.

We discussed the Fontan and Dr Stock was talking about the different ways to go about it and what Dr Hanley is going to look for in the MRI and Cath. The entire room started spinning, I felt every ounce of blood rush out of my face and I lost it in the garbage can under his sink. He, of course, made sure I was okay.

I don't know what happened. Everything just hit me at once. I wanted to hear that his heart is doing great.. his valve leakage is just as we wanted it.. he is on track for the Fontan. I didn't hear any of it. It was a blow. Then the worst part of it, for me, is not knowing what will happen in July.

I came home and crashed. Realized I had a fever, chills, achy body and didn't want to get out of bed. Am I sick? Maybe I have a bug that caused me to puke. Maybe it is the Progesterone I am taking to regulate my cycle. Maybe it was the combination of everything and getting news that I didn't want to hear. I have never wanted to get out of the cardiologists office so bad.

I am so glad Kamryn was home with us today to entertain Owen and help take care of him. I am grateful that she is so healthy and smart! I am going to do my best not to worry myself crazy over the next two months until we leave for Stanford. We will just enjoy our summer vacation and I will just continue to pray fir Owen's heart. It's all I can do.

My kids stats from today's visit...

Kamryn: 5'3" -- 102lbs -- sats and blood pressure fantastic!
Owen: 38" -- 30lbs -- sats at 80% on 1 liter -- blood pressure 70/40 (norm for Owen)