You know how you always tend to run into people you haven't seen in forever when look your worst?  Today felt like one of those days.  I didn't sleep too well last night so I slept in a bit while Joe took the 3 kids on a walk.  I woke up at 8, rolled out of bed, put some clothes on and decided to bypass a shower and makeup so I could meet up with Joe and take the kids to see Stephen.  Well instead of running into an old friend we had FOX News show up in our hospital room =0)  It was pretty neat.  They will be doing a short segment on Miracle babies and the nurses thought our family would be perfect.  The aren't sharing our story or anything, they just took video of our family with Stephen.  Michael was really into it.  He was feeding Stephen and looking into the camera.  The girls didn't have a clue what was going on...and of course I looked awesome =0)
Stephen is still doing great and we are eager to get home.  I keep asking when that will be and they keep not giving me an answer.  Going home is going to be strange.  Taking Stephen home is not going to be the same as taking Michael, Lizzie or Audrey home.  We are going to have to get used to a new normal.  To some extent we have to keep him in a "bubble".  Most people love babies.  They love holding them and kissing them, etc.  And while Stephen is a cuddle bear and loves kisses, people showering him with that kind of love will not be good for him.  He isn't a "normal" baby right now and the doctors have already warned us that him getting a cold means most likely being admitted into the hospital.  They know we can't shelter him completely but they have suggested no large crowds, no visitors who are sick or have been around someone who is sick in the past week, and a look not touch policy.   The 80% survival rate we mentioned before lasts until his second surgery.  80% of kids make it to the next stage.  He will be sent home on monitors and have regular appointments to make sure he doesn't outgrow his shunt and develop any clots or other complications.  Remember he has only completed stage 1 of a 3 stage process to get his heart working more like normal heart.  Whereas our oxygen saturations are 100% Stephen's are only about 75-85% after the first surgery, 85-90% after the second and finally 95-100% after the third.  He truly does have a long road ahead of him but we are so very grateful for how far he has come already.  Each day with him truly is a gift.  He is a miracle baby and we are so thankful for what God has given us.
Needless to say we have entered a new normal and will continue to learn what our life will be like.
Thank you for your prayers and love.
Hopefully I will get a chance to post some more pictures tonight =0)
Much Love
The Russells

Today we made some progress.  This morning his oxygen was down to room air and the doctor decided to just take him off of it to see how he would tolerate it.  Even if he started to slightly dip she wanted to see if he would be able to bring himself back up.  He has now been off oxygen since 9:30am!!!  I know at any point that can change...but it feels so good knowing that he can do it.  

This is the first time we have seen his face with nothing else on it!!!
Such a little blessing =0)

We still have to finish up the antibiotics...not sure exactly how many more days he is on them.  Things change constantly here =0)  We also have to undergo some homecare teaching eventually.  He will be going home on medications and monitors so they will prep us on how to handle it all.  It just feels so good to know we are heading in the right direction.
We also have our other kiddos here with us again.  It is so great to get some more time with them.  We made sure they didn't get naps today so bedtime would be easier...it was a total success!  Now if we are smart we will go to bed too so we won't be exhausted when they wake us up early =0)
Please continue to pray that Stephen will do well off of the oxygen.  We want to take this little cutie home soon!

Nothing new in the medical department today so I thought we would share some cute pictures.

Still trying to wean him off of oxygen, but he is a happy boy!

Stephen is trying to pull off his cannula...he loves to keep the nurses on their toes!

Just wanted to share a little picture from today.  He is a good sleeper =0)

A Surgeons Day Off

Today our surgeon came in on his day off to check on some patients he operated on yesterday.  I love this man.  He didn't have to come in but his wife and daughters were at Trader Joe's so in he walked in street clothes and a Coke Zero in his hand to see how the little ones were doing.  Not only is what he does amazing but his care for his patients is so sweet.  He saw Joe and I and stopped by our room to say hello.  Since he was in street clothes I of course made the comment "I didn't know Dr's owned jeans"  To which he replied "We only get 1 pair".  He is not the most talkative guy, and today may have been the first time we saw him smile, but he has his own way to show he cares.  It was so strange to see him as a "normal" guy.  He actually told us that tomorrow him and one of the anesthesiologist are taking their kids to Disneyland.  It was sweet to hear him talk about his daughters, who are 3 and 6, and their love for princesses.  You forget that each doctor, nurse and surgeon leads a life outside of this hospital...heck I forgot that I led a life outside of here =0)  But there is something so beautiful about life and the way we are all connected.  I may not have a clue how to operate on a heart but I am a parent and can share that bond with so many people.  Joe and I have really got to know a lot of the staff here...I think we became their favorites when we bought them all pizza.  =0) We talk about all sorts of things but generally speaking we always talk about our kids.  If their kids are younger we relate with our own children and if they are teenagers we share stories about the youth group.  We have really enjoyed getting to know them and are so thankful for what they do.  I am so grateful that they have such a love and a passion for what they are doing that even on their days off, which are few and far between, they would come in to make sure everything is okay.  Something so simple made my day =0)

So Stephen had the doctors a little stumped.  The type of strep that came back is generally a contaminent meaning it wouldn't be something in his blood stream but possibly something that came into contact with the blood after it was drawn.  The doctor however was convinced that was the case since he did have other signs of an infection, a mild fever, elevated crp, higher oxygen requirements, so he was going to defer to a specialist.    Joe and I waited all afternoon in hopes of talking to the doctor of infectious diseases...seriously they should come up with a new name for that...it just sounds gross.  We stayed until 6:15 and then decided to grab some dinner and skype with our kiddos and of course the doctor snuck in while we were gone so we didn't get to bombard her with our questions.  The neonatoligst said she they were going to play it safe and continue the antibiotics for 10 days.
Then came last night...seriously poor guy.
Apparently the neonatalogist missed a message from the infectious disease person that said they should do a spinal tap to be safe.  They tried contacting us at 11:30 pm but we were sound asleep.   They went ahead and did a spinal tap and it was negative.  They also were having a hard time with his picc line flushing so they had to put another IV in his foot.  My heart feels for this kid.  I hate that he has to go through so much and I wish I could take it off of his plate.  He is such a fighter.
Please continue to pray for healing and specifically that his oxygen requirements would go down and that the so called infection will be gone at the end of the 10 days =0)
Thank you!

No News Yet

We are still waiting to hear what type of infection Stephen has.  His fever has seemed to go away and they have put him on 2 antibiotics that they refer to as "the big guns".   It is always hard to move backwards especially after he was progressing so rapidly after his surgery.  There was talk for awhile about us being able to soon go home and now we could be here for 2-3 more weeks depending on the type of infection and the length of antibiotics that will need to be given.  That was hard news to hear but I would rather be here a little longer and have a healthy kid in the end so I am over it  =0)  He also had to have a PICC line inserted last night. (A central IV line for his antibiotics)  It was a bummer for us because we have now lost the freedom to pick him up without a nurses help.  But I just remember how lucky I am to even be able to hold him and all is well.  This little guy has seriously been through so much.  When my other 3 kiddos would cry as infants I remember jokingly saying to them "I know you have a rough life.  You eat, sleep and poop".  But when this little guy cries I truly feel for him.  He has had such a rough life.  This little guy has been through more than most of us adults.  I am pretty sure he has been stuck by a needle more times in his 2 weeks than I have in my 30 years.  I just pray this is an easy infection to beat and that we can all be home together soon!