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!

Prayers Needed

We were warned that this would be an emotional roller coaster and that we would have our ups and downs.   Today is a big down.  I find myself in tears again writing to you asking for prayers.  Stephen does have a bacterial infection.  They think it is a form of strep but what know which type until tomorrow.  For now they are treating it with a genreal antibiotic but once they find out the type and source they can treat it with a more specific medicine.  Depending on the type they could possibly need to do a spinal tap as meningitis could be a possibility.  This news was so hard to hear...we were so close to going home.  Please pray that the infection would just go away and pray that he does not get meningitis as it could be life threatening and full of complications.

Today was a good day.  It has been nice having our kiddos around.  Last night went well enough that we are keeping the one more night...they love it!  We let the kids see their brother today and they were thrilled.  We were advised to only let immediate family see him in the hospital post surgery and were debating letting the kids back in.  We want to protect the little guy from possible germs...but they missed him and we let them in =0)

Brothers sporting the "Joe-hawk"

Of course both girls have their fingers in their noses =0)

Stephen's fever seemed to be no big deal.  All of the labs came back fine this afternoon.  He will still have more drawn tomorrow but we are hoping it was just a random reaction to having his line pulled out yesterday or a response to having still just had a major operation.  Sometimes we forget that it will only be a week tomorrow since the surgery...he has progressed so quickly!

Please continue to pray that he can be weaned off of the oxygen.  I think that is the last major agenda item before going home.  Once he can come off of that they would pull out the pace maker wires and begin the lengthy discharge process.  It could be days or weeks...who knows...but lets pray for days =0)  

Also pray for the nurses, doctors and staff we come into contact with.  Stephen has had the same nurse for the past 3 days and we have loved her.  Today she asked me how I dealt with the news of his heart and I was able to share our faith with her.  She had been impressed with our "coping skills" and asked me how we did it.  I simply started by saying our faith in God.  It was a very sweet moment.  My assumption is that she is not a believer...when they hear what we have to say they chime on in.  She just listened and nodded.  Who knows where it will go but today she heard about how Jesus died for our sins and about the hope we have in him.  I told her that one day God will perfect Stephen's heart in heaven and we just pray that isn't for many years to come.  

I want to take this little guy home so badly, but I pray for each day we do remain in the NICU there are many more conversations like this one =0) 

With Much Love,

The Russells

Stephen had a small fever at 4am.  They ran a bunch of tests and did some ex-rays.  His white blood cell count was a little elevated.  They are going to check it at 4pm today and if it remains the same they will start antibiotics.  This could be a reaction to having the line removed yesterday or he could have an infection somewhere.  Please pray that it all goes away.  Yesterday the nurse practitioner who took the line out even said we need to get him home before he gets sick.  That is just a part of this environment...and well life.  He also had his first post-op echo that the cardiologist will be taking a look at...we hope and pray to hear only good news!
Thank you for your prayers...keep them coming =0)

Stephen is 2 weeks old today!!!  I realized I haven't posted in almost two days.  Once we were able to hold him again I have basically spent all of my time with him in my arms =0)  Today was another big day...his transthoracic line was taken out!  He is now only hooked up to monitors.  You don't know how great this feels.  For the first time we are able to pick him up from his bed without the help of a nurse.  They are ultra careful when they have these lines in because if they come out they can bleed to death...not fun.  But now we have so much more freedom and we are loving it.  When they took out the line they also took all of the gauze off his incisions and replaced them with steri-strips.
Yesterday they also moved him into a hospital crib.  He looks like such a big boy in his new bed.  The doctors and nurses continue to be amazed at his progress.  One nurse said she has been doing this for 36 years and has never seen anyone quite like him.  God is so amazing!
Today was also the first time I have been home in a month...crazy!  Joe and I drove up to pick up our kiddos for the night and to pack some more clothes.  It was so strange to be back in Fallbrook, even for such a short time.  Our house looked so large!  I guess that what you get after spending a month in hotel and hospital rooms!!!    We are excited to get to spend a little more time with Michael, Lizzie and Audrey.  We haven't lived with them in 2 weeks and quite frankly we forgot how loud they are =0)  Joe, Stephen and I don't make much noise  so it has been pretty quiet around here.  I am actually enjoying their craziness.  It is 9:30 pm right now and Audrey is singing Old McDonald in her crib...I love it =0)
I am also ready to shop.  Yes I already own a carseat and a broken stroller but they are 5 years and 3 kids old and I think Stephen deserves a new one.  After all he did just have open heart surgery =0)  The kids helped pick out blankets and little beanies and I can't wait until I get to put the little guy in clothes!  Shopping is going to be so much fun!!!
Here are a few pictures form the last 2 days...