Thursday, September 29, 2011


Not much to say this week.  Just joy that we're looking at this sweet smile every day.  This is one of the pictures from our portrait session with Jennifer from  More to come!  I am continually amazed that we made it through this past week so smoothly.  It is really over!  After over 2 years of anticipation, we have crossed this hurdle and I am so, so glad.

Steven Joseph is doing great.  We are trying to keep him home away from germs (they say the bypass machine really wiped out his immune system), and trying to keep him calm and resting, but it is proving to be quite difficult!  I've found him on top of the washing machine and balancing on the arm of the couch.  I am constantly telling him to stop running.  We have all sorts of electronics, books, arts and crafts, and quiet things for him to do, but it's hard to keep a 3yr old still!

He's rather sore and is still on one daily medication until at least Monday, when we go for our post-op appointment where he'll also get his stitches out.  It's quite a scar!  But I imagine when the steri-strips are off and we stop doing daily iodine wipes, it will look just like a little thin line down his chest.  We're working on getting him eating more; his appetite is not quite back and he's lost a few pounds.  Today he ate so much better.  He has a little hunchback, I imagine it hurts to stand straight.  Today I asked him about the hospital...he remembers some of his experiences, but thankfully doesn't remember the morning of surgery or his time in the CVICU.

In a few days, I'll start writing out the story of his surgery.  It was quite an intense few days, and I feel the need to just rest and recuperate this week.  It's like we ran a marathon, physically and emotionally.  We've had family and friends helping out and taking the girls to their activities, so I've had lots of time with my sweet boys.  I'm just soaking in the love and praising God for a healed heart! 

Monday, September 26, 2011


We are home!  He is doing amazingly well for having just undergone open heart surgery 3 days ago.  I can't believe it and just praise God that through the amazing doctors and nurses at Texas Children's Hospital, he has healed Steven Joseph's little heart. 

Thanks to all of my amazing friends, family, and online buddies for your prayers, support, gifts, and encouragement.  We felt so lifted up through this whole experience through your tangible gifts of online messages, texts, meals, helping with children, and even house cleaning fairies!

We are so very blessed.  Thanks be to God!  Please pray for a continued recovery, and that he will slow down a little bit!  We can't have him injuring himself after such a big operation!  We are so happy to see his smiles though, and his little boyish antics coming back.  We love you, Steven Joseph!

Sunday, September 25, 2011

Our boy is back!

We had a rough night and long morning...needing a new IV placed, soiling the bed, Thomas falling on his head, early wakeup for vitals, lab work with a finger prick, and about 6 hours of fasting before and after they pulled the drain tube from his chest.

But a visit to the heart ward playroom perked him up. He started painting a picture of the aquarium in there, and immediately his face just lit up! After that he started walking, playing with his sisters and cousins, eating, and I even had to tell him to stop running twice! Our friends brought communion and a sweet book of prayer letters, and grandparents came to visit too.

My favorite statement of the day was, "I can do everything now!" Hopefully he has a good night and we'll be heading home tomorrow.

God is good and has answered all our prayers.

Saturday, September 24, 2011

A good day!

He slept most of the day (will probably be up all night), got most of his lines removed, moved to the recovery floor, had a few visitors, ate a Happy Meal, and started to play with toys. He's doing great, my little superhero!

Friday, September 23, 2011

{this moment}

~A Friday ritual. A single photo - no words - capturing a moment from the week. A simple, special, extraordinary moment. A moment I want to pause, savor and remember~

Out of surgery!

He did great! Breathing on his own and in the CVICU. Now we just pray for a smooth recovery and good pain control. He should be into a regular room tomorrow and home by Monday!

In surgery

He went in just after 7am with no tears except when he fought the syringe of sedation meds. Hopefully he will be done around lunchtime. Thanks for your prayers!!! (and yay for
Blogger app on my iPhone!)

His Big Day

Lord, I ask you to please guide all those caring for Steven Joseph today.  Please allow for a smooth surgery and recovery for our precious boy.  Please heal his heart and grant peace to ours.  We ask you to be with all children who suffer, in particular all of those heart patients at TCH this week, those we've met, those who we will meet, and those whose conditions have warranted changes (or may warrant change) in our schedule. 

Sacred Heart of Jesus, have mercy on us!
Immaculate Heart of Mary, pray for us!
St. Padre Pio, pray for us, and help us remember to "Pray, Hope, and Don't Worry!"

(I'll try to update here as I can tomorrow.  We are looking at a 7:30 or 8am surgery time, although there is still a chance we could get bumped again due to a heart transplant patient.  Thank you for your prayers!!!)

 Kissing pictures of his best buddy J.  J's family made him a sweet photo book. He wore a tie in the car, but took it off when we got to the mall, because he didn't want people to look at it! Too cute for words.

His Build A Bear outing this week!
Making a wish before he puts the heart in the bear!  

Giving bear a shower and a brush

SJ and "Fisherman" Bear. 

Our Silly Boy!

Wednesday, September 21, 2011

Change of Plans

The surgery has been postponed until Friday morning.  There was a newborn baby who is very sick and needs to take Steven Joseph's slot tomorrow.  We are forced to be patient and trust that God has it all orchestrated together.  This will allow me to be with the girls at co-op and ballet tomorrow and hopefully allow for some good rest, two nights at home before the big day.  And Friday is the memorial of St. Padre Pio!

We ask for continued prayers for trust, hope, and peace during these days.  I also ask for prayers for the sick little baby and all hearts in urgent need of healing.  I'm thankful that Steven is so healthy.  Being at the hospital all day today reminds me of this.  It also reminds me of how blessed we are to have such a wonderful hospital and staff that specializes in pediatric cardiac surgery here in town.  They are amazing and it was a good day.

We had a wonderful celebration of Thomas' birthday with Steven's side of the family tonight.  We love our boys and cherish each smile, each birthday, and each of their crazy antics!  Thanks to all of you who have sent special messages, gifts, calls, and prayers our way.

Thomas' story


I've been planning to type this up for months and months.  I had so many funny photos from my pregnancy with Thomas that I wanted to put here on the blog.  Finally, I've been able to put them together over the past week to keep my mind busy and keep from worrying about his brother's big day.  Today we celebrate our THOMAS!

Thomas' story started with a doctor visit and bloodwork adventure and some siblings who were quite confused at what exactly we were doing!

I think they figured it out when I parked here!

One of his first ultrasound pictures!

One of my first attempts at a belly pic!

And the doctor office adventures really begin!

growing belly pictured on my new iPhone and new Nikon that spring!  I got some pretty good birthday and mother's day presents that year!

Cute baby on 4D ultrasound, giving us a thumbs-up Gig'em sign below!

A tired, pregnant mommy resting on July 4th at Grampatti's!

 Thomas got to visit California in-utero!

It's a small world!

Back home for my weekly shots to keep baby in-place.
Can you find Steven Joseph in this picture???

Always fun times in the waiting room!

Ahhh.  A day at the doctor without the kids!

Wrestling on the waiting room floor was a weekly occurrence.

But still some of the time it was just me and my baby belly at our appointments.

After the waiting room sagas, then we'd usually have another long period of waiting in the exam room.  Keeping them entertained in there was quite a project!

But we were always so grateful to see the ultrasound tech Angie and get a peek at our sweet little one!

Who would hit the elevator buttons first?  Always a race!

Growing belly pics continue...

All those hours waiting at Dr. R's office...He was an amazing doctor, but they have got to figure out a better scheduling plan!

Loved that parking space near LaMadeleine.  This was probably my last solo adventure getting some lunch to eat before baby.

Very close....

Sitting at Dr. R's office once again. This time I had a hospital bracelet on since I had just spent some time over there concerned about being in labor.  We did an ultrasound, and he did an exam and found that I WAS in labor!

No more waiting!  It was baby time!  Here's Daddy suiting up!

Our sweet 7 lb angel.  37 weeks and he did great!

Happy Mama to be through that medical adventure with a healthy baby in arms.

So grateful to God for Thomas William!  He was worth all the craziness of those appointments!


My big walking one year-old baby boy!
 How time flies!

We love you, Thomas, and hope your second year of life is filled with just as many smiles :-)

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