Were Home Again

Sorry to write this so late but last night was miserable.  Stephen was fine but I got no sleep...literally maybe an hour total.  Since I had been up since 4 am on Friday I went straight to bed as soon as we walked through the door around 11:30 ...and am just now arising.  
I told you we had a shared room...what I didn't know until later was that we were sharing with a little girl who currently is not allowed to eat.  Why they paired us I have no clue.   She should have had a solo room and they should have figured that out and moved her...but that is just my opinion.  She cried every 15 minutes, and it wasn't cute little sniffles, but full blown wailing.  What was more frustrating was having Stephen get woken up by it ALL THE TIME.  I hope over the next few days to get his sleeping/eating habits back to normal because right now they are very skewed, but for now I am just grateful to be back.  Yesterday was scary.  Waiting anxiously for 3 hours to hear how everything went is no fun and being delivered the news about a possible pacemaker felt like a blow to the chest.  He looked great all through the night and his 2 EKG's, Echo and chest X-rays were fine.  We will now just have to monitor him a little closer to make sure his heart rhythms remain normal.
Please pray that they do remain normal, and not just now, but forever.  This can pose the same problem during his next surgery aswell.
Please pray that Stephen will get back on a "normal" schedule and that he will continue to eat well.  Maybe he is just exhausted but he isn't quite as into it as before and that worries me.
Please pray for these amazing doctors who deal with so man patients daily.  May God continue to use their passions and talents for his glory.
Thank you for praying!!!

Cath Lab

Today has been a long long day.  I have been up since 4 am!  Things didn't turn out quite the way we were hoping but he is doing well.  They did end up needing to put a stent in his shunt because there was some narrowing due to scar tissue.  Amazingly it is all done with catheters inserted through his groin.  It will hold him over until his next surgery which will most likely be mid-August.  He also had a heart block during the procedure.  We were told that his heart did not stop but his heart rate did drop significantly low and they will have to monitor him closely to make sure it was a one time occurrence from the probe touching his heart.  If it does repeat itself it would mean he would possibly need a pace maker...not ideal but also not the end of the world.
Joe actually just left to spend the night with our kids and I am staying with Stephen in his hospital room.  As long as there are no complications tonight, and his EKG looks good in the morning, we should be discharged then.  I have a feeling it will be a rough night.  We are in a shared room with another baby which means twice the crying and twice the beeping.  However I am grateful that I get to be here with him and can feed him through the night.
Stephen is a trooper.  The poor little guy sounds awful.  His voice is hoarse from the ventilator, he is still very sleepy form the anestesia, and is so pale...but he was still smiling up at us  =0)
Please pray that he does not need a pace maker and that his heart rhythms remain normal.
Pray that I can get some sleep tonight and that we get to go home tomorrow.
And pray for Joe and I...this is not easy to live through.  It breaks my heart, but I thank God daily for him and pray for many years to come =0)

Pre-op this morning

Smiling up at Daddy

Cath Lab Tomorrow

Hi Everyone!
Please pray for Stephen tomorrow as he goes in to the cath lab.  We have to check in at the hospital at 6:30 am but the procedure is at 8:30.
Pray for the doctors- that God would guide them during the procedure and that all will go smoothly
Pray for Stephen- that he would have no difficulties being intubated/extubated and that he doesn't get an infection.
Pray for Joe and I- for God's peace in our hearts...it is never easy watching your child wheeled away

We will let you know how it all goes and will pass along any results we are given.
Thank you for your prayers!!!!

Here is a cute picture of the little guy sleeping...love the pose!  (and the chunks!)

We need your help

It is amazing how time can heal.  It feels like forever ago that we were in the hospital with Stephen and at times it feels like it was all just a dream.  Our daily life isn't much different than it was before his birth minus the fact that I don't get out much and have nurses stopping by twice a week.  Yesterday we spent the whole day playing.  Joe had the day off and we made the most of it!  We made smoothies and popsicles, swam in the pool and set up a backyard campsite with s'mores and all.  The kiddos attempted to sleep out there with Joe but only Michael lasted.  Life is good and relatively normal.  Stephen looks amazing and acts exactly like our other 3 children did...even better.  He hardly fusses, is easy to console and loves to smile.  But no matter how much time goes by the emotions and feelings can come flooding back in an instant.  I decided to make video/slideshow of pictures to the song "All of Me".  It was something I had planned on doing a while ago but just found some time to start.  It has proven much more difficult than I thought.  I watched it once and cried my eyes out.  Then began the editing.  I had to crop pictures, change time frames, etc.  In order to make it look good you have to watch it over and over and over.  That night I hardly slept.  The words to the song and the images became so fresh again and I found myself once again sobbing in Joe's arms and again asking why?   Why Stephen?  Why us?  Why not something difficult but curable?  It crushes me to look at him and know that his heart can't be fixed and that one day we will have to explain this to him and that he will know how "fragile" his life is.  I know that is far in the future and that God will give us the grace we need when we get there but I want him to know how very precious he is and how his life has made such a difference to our family and many others.
And that is why we need your help.  SO many of you have shared with us how his story has touched your lives and it would mean the world to us if you could write it in a letter to Stephen so that one day when the time is right Joe and I can give them to him to be encouraged and uplifted.  We have heard it being used as a witnessing tool, a reminder of the power of prayer and the strength of God.  To some it has brought them closer to God or enabled them to have conversations with family, friends and co-workers that otherwise wouldn't have happened.  His heart has encouraged and inspired people and I am sure it would mean so much more coming from you directly then mom and dad trying to tell him stories.  It would be something tangible that he can hold and read and look back on when he one day asks "why?".  I know how much your words have encouraged our family and I pray that they would one day do the same for him.  It doesn't have to be long but a simple message that I pray will make a difference in his life one day.
I don't want to put our address on the blog but if you would like to take a part in this please email me and I will message it back to you.  kdrussell04@aol.com
Thank you for taking the time to do this we pray your words will touch his heart as they have often touched ours.

PS.  I will post the video as soon as I finish it...whenever that may be

2 Months Old!

Yesterday Stephen turned 2 months old...it is crazy how fast time flies.  Today he went in for his well baby check-up/ shots visit.  I adore our pediatrician.  She is a sweet Christian women who clearly loves what she does.  She has never cared for a child with his condition but I trust her all the same.   Besides, she doesn't need to be an expert with his heart condition...that is what his cardiologist is for =0)
I can tell she will always lean on the side of caution with him, which I love and appreciate, and she has been in great communication with his other doctors.  We have been very impressed with the coordination of his care.  But mostly I just love that she believes in the power of prayer and truly knows what a little miracle he is.
I am happy to report that he is doing AWESOME!  Our little chunker now weighs 12 lbs 12 ozs...he seriously gained 4 1/2 pounds in just 2 months!!!  We praise God for this remarkable weight gain knowing full well it is an answer to so many prayers.  So far he has tolerated the immunizations well but please pray that he has no side effects/ reactions to any of them.  
Developmentally he is right on track.  He is holding his head up on his own, pushing up with his arms and his tummy and smiling a ton.  He is one of the happiest babies I have ever seen.  This kid smiles all of the time and it isn't a little smirk but a wide open "I love life" kind of smile that just melts your heart. He adores looking up at his siblings and they just can't get enough of him.  
As for prayer requests please pray for his upcoming cath lab on June 29th.  We don't know fully what to expect but please pray that they don't have to "fix" anything while in there and that his pressures are where they would like them to be before the next surgery in about 2 months time.  Also pray that he would not get an infection and would be able to go home that night...thank you!!!
As for us we are all doing well.  Michael finished up preschool and will be a big kindergartner next year.  We have him enrolled in a neat program where he will go to school 3 days a week and I will get to teach him the other 2 days.   Lizzie and Audrey have been spending their days playing "house".  It is a crack up.  Lizzie is the mom and Audrey is the baby and boy do they have their roles down!  Summer is always busy for Joe.  He has programs/events 3 nights a week, 2 weekend retreats and 1 week long trip to mexico.  Usually the kids and I tag along to some of the pool parties and beach days but sadly this summer we will have to miss out.  It is just for a season though and hopefully next summer we will get to be a little part of it all.   I really do miss seeing people and going to church.  The few conversations I have had with people have been so uplifting and I probably talk their ear off since most of my days are spent with 4 kids age 5 and under.   I look forward to the day when we can take him out a little more than we do now and not have to worry as much about germs and such.  
Thank you all for your love, support and prayers.  Your little messages brighten my day...thank you =0)
Here are some pictures form this past week...

Love that double chin!

Happy Father's Day

Stephen had a cardiology appointment on Monday and he is looking GREAT!!!  They did chest x-rays and an EKG and the doctor just kept commenting on how great he looks and how well he is doing.  He was impressed with the rolls on his thighs...Stephen is now over 12 1/2 pounds!  The next step is a cardiac catheterization scheduled June 29th.  He will be fully sedated and intubated for the 2-3 hour procedure and he should be able to go home that night.  The cath lab will help determine the second surgery date which they are now looking at it being sometime in mid-late August.  Just the thought of it brings tears to eyes so I do what I got to do and not think about it.  Its hard to think that in 2 short months we will have to live through it all again.
On a brighter note we did let the kids hold Stephen and have some cute pictures to share.  We are back to being a bit more cautious but it felt good to let him be in their arms.  It was nice that they got to have that special bonding time and it sure brought Joe and I great joy watching.
Please continue to pray for Stephens heart and that our family would remain healthy.  We know there have been some illnesses going around and would sure would love to protect him form them...thanks!!!