Yesterday the kids and I did a bunch of baking.  We made all sorts of goodies for the doctors and nurses in the NICU.  It was so much fun spending time in the kitchen with them but even more fun explaining why we were doing this.  After we had talked about it I had Michael and Lizzie make them some cards.  Michael's words were so sweet..."Thank you for helping babies".  

The left is him opening the door and waving "hi"  and the right is the sun setting =0)

Today I had my 6 week check-up at the Perinatal center so Joe, Stephen and I got to visit the NICU and drop off the goods =0)  It was perfect.  We actually got to see all of our favorite day nurses and 2 of the doctors.  They were all so amazed at how great Stephen is looking.  It was nice getting to share how life was going with them and get to bless them with some sugary goodness at the same time.  

 

Stephen is continuing to thrive at home.  On Tuesday he weighed in at 11lbs 4ozs!  Sometimes it is hard to remember how fragile his little life is because he looks so amazing.  Please continue to pray for his heart and that there would be no complications before his next surgery.  He still has such a long road ahead of him and we know your prayers will help carry him through.

THANK YOU!!!  

 

In an ideal world I would be a neat freak.  Call me crazy but I like things to be in there place.  Dirty clothes should be in the hamper not in the hallway and dirty diapers should be in the trashcan not on the living room floor.  With the addition of each child I had to give up a little more of the ideal and adopt more of the practical.  With four kids I am pretty sure all of the ideal is now gone and won't be making an appearance any time soon.  I tried fighting it.  I told my self I can do this one room at a time.  Each day I picked a room to clean and each day my efforts were undone.  I even mopped my floors twice only to find them covered in dirt, play-dough and spilled milk.  I tried fighting it because I love a clean house and I feel accomplished when I have a clean house.  Since I realize a clean house is out of the question I found myself setting new standards.  I now love a house that has been played in and feel accomplished by playing.  So if you stop by there may be dirty diapers on the floor, dishes on the counter and milk stains on the cupboards, but hopefully it is because we were too busy playing to notice =0)
Today Joe and I drove down to Rady's for a cardiology appointment.  We got to meet Dr. Davis, the cardiologist who will be following Stephen, and absolutely love him.  Stephen is still looking great and the shunt sounds good (whatever that means).  We will follow up with him again in June and then in July he will either have a cardiac catheterization or MRI (both require him being sedated and intubated) to get a close look before the second surgery.  We won't have an actual date for the surgery for quite some time but it may fall sometime between late August and early September.  Just the thought of it is no fun...so no more thinking for me =0)
Other good news...the results from his lumbar ultrasound came back normal!  Since it had been a week and we hadn't heard anything I was figuring no news was good news and it was.  Praise God!  The lump on his spine has now resolved itself and any concerns from the birthmark were put to rest.
Stephen is growing and developing as he should.  He is getting so strong and has been picking his head up to look around.  Michael cheers him on as he does it...it is adorable.  He is more alert and awake in the day time so we are finding fun ways to play.  Today Lizzie and Audrey read him some books and colored pictures for him.
Since I cant take Stephen out too much I am trying to find fun things to do at home.  Joe and I have also been talking about how to give back and serve.  We have so many great ideas for the youth group but also a few that I want to do with our kiddos.  Next week we are going to bake some goodies to bring down to the NICU staff.  I think I want to make it an every other week thing where we bake something and bless someone with it.  We also want to make little goodie bags for families at the Ronald McDonald house and maybe even some get well cards for children in the PICU.  I wish I new how to crochet...never quite picked that up, but maybe eventually make some simple fleece blankets.  This won't be an all at once venture, but I am hoping teaching my kids to serve will be a lifelong lesson.
We also wanted to update the prayer requests.  Please Pray for no complications before the next surgery and no illnesses for him or our family.  We pray that God would continue to protect his little life and strengthen his body.  And pray that God would continue to use his story to make a lasting impact on others.  Thank You!
And now some pictures to enjoy =0)

Yesterday was a special day as we were able to bring Stephen to our church.  Riverview has been such a support to our family.  They have been providing meals, taking care of our yard, writing encouraging notes, praying non stop and even set up a medical fund to help with the hospital bills which are now beginning to flow in.   Even though he shouldn't be around large crowds we wanted to briefly give the congregation a little glimpse of this miracle that they were a part of.  The power of prayer is so powerful and it felt so great to get to show him off to some of those who have faithfully been lifting him up to our heavenly Father.  It worked out perfectly.  I snuck up on stage with him as Joe did announcements and then hid out in a locked office during and in between services.  The isolation isn't ideal but necessary.  I wish I could have carried him proudly around the patio and let people shower him with kisses and hugs but that will have to wait.  I also wish I coud have hugged everyone and thanked them personally for their support and encouragement but that day will too come.  This time of sheltering will fly by as life always does and before you know it he will be right behind his daddy pushing the coffee cart =0)
Stephen is continuing to put on weight.  Today when the nurse weighed him he was 10 lbs 10 ounces!!!  Seriously this kid is A-Mazing.  That means in 5 weeks he has gained 2 1/2 pounds form his birth weight...not too shabby!  We are still waiting to hear results form an ultrasound last week.   I am hoping no news is good news =0)  He will see the pediatrician again Wednesday, Cardiologist Thursday and Homecare again on Friday.  He is being well taking care of!

Check out the cheeks...and his smile!

"Rookie of the Year"

Today Joe got a special phone call.  Upon our discharge we gave every nurse a thank you card, and filled some with special gifts, and were able to give each doctor who cared for him a nice bottle of wine.  But we wanted to do something extra special for his surgeon.  He had mentioned the day of Stephen's surgery how he drinks a cup of coffee each morning so we designed a special ceramic mug for him.

It is simple and sweet as says "Heart Hero".  We paired it with some nice coffee and a bottle of wine...we didn't want him to be left out.  Today He called Joe to thank us for the gift.  =0)  How sweet is that?  When Joe shared his words I smiled ear to ear.  He said he has put them all to good use but that he especially loved the mug because he knew a lot of thought had been put into it. He was even using it as he called =0)  It was so neat that he took the time out of his busy schedule to make that call.  I had hoped the gift would show how truly appreciative we are for what he does, not only for Stephen, but for so many other families.  Dr. P is a hero in our books!

Yesterday my little sister got married.  It was such a sweet day.  She looked absolutely stunning and I was so grateful that I was able to stand beside her as she said her vows.  I feared missing that day since we found out about Stephen's condition.  I love weddings and love my sister.  It was truly a blessing we got to be a part of the celebration.
Gretchen's upcoming wedding got me thinking alot about my family.  One of the reasons I wanted to have a large family was because of the relationship I have with my siblings.   The four of us are so close and I love them each dearly.   This journey has all the more showed me how blessed I am to have them in my life.  We truly do share life's joys and sorrows.  The love and concern they had for me this past month is touching.  In my darkest time they cried and hurt too.   I haven't been very talkative lately...shocking I know.  This blog has been a great way to communicate because verbally relaying Stephen's condition or thoughts, feeling, enmotions, etc was impossible.  No part of me wanted to talk on the phone and for awhile I didn't even want to see people.  It was too hard and too painful.  It was muh easier to just live in the moment rather than talk about it or try to explain it.  But they let me go through it the best I knew how.  When I needed space they gave it I when I needed them there they came.  I have never felt more loved by them.
It also amazed me at how well my parents know me.  I makes sense I guess...they have known me my whole life.  =0)  I didn't have to say how I was doing or what I needed...they just knew.  They know my roller coaster of emotions.  My highs are high and my lows are low.  The best part about my family is that they are willing to ride that roller coaster with me.  This past month had it share of highs and lows but my family comforted and prayed us through those lows and rejoiced with us in the highs.
Yesterday was simply beautiful.  We came together again and shared in the marriage of Gretchen and Matt.  And the best part is we gained another brother into our family.  =0)  I look forward to sharing life with them.  I want to be there for their ups, which I hope are many, and their downs, which I pray are few.
Thank you...I love you all so much and am so grateful for the love of family =0)

1 Month!

Today our little Stephen Joseph is a month old...and what a crazy month it has been!   I went back through all of my old posts and reflected on this little guys life.  He truly is extraordinary and God has blessed us all immensely =0)
This week has been packed full of appointments.  He has been seen by a nurse or doctor every day since we have been home.  On Wednesday we wen't back to children's hospital and when we pulled up it felt like home.  As we walked to his appointment we saw so many familiar faces...faces that we have missed.  At first I didn't understand why I felt such a deep connection to a hospital, or to people who I hardly knew, but a friend put it best.  We went through a crisis there and these people lived through it with us.  The doctor, nureses, technicians, janitors, etc...they were with us in room 3214.  I know that feeling will fade but I think it also reflects on what an amazing team cared for us at Rady Children's Hospital.  One special lady was Manuela.  Every night she brought me joy.  I always looked forward to her smile and she faithfully asked how Stephen was doing.  The night before we left we gave her a gift.  It was so sweet.  We hugged and she cried.  To most people Manuela cleaned their room.  She emptied the trashcans and mopped the floors.  To us she was more and it such a special moment to people able to thank her for being apart of our life, even for a brief moment.
This has not been an easy road.  Stephen's scars have served as a daily reminder of what we have all been through, but they are also a reminder of God's grace.  God has held us all through this past month.  I am so thankful for a heavenly father who is bigger than us all and can see us through anything.  My heart goes out to all who don't know him.  Joe and I prayed for each little baby in the NICU.  We watched so many be brought to and from surgery and we prayed for each of them and their families.  I truly don't know how one could cope without faith yet so many are without it.  I wanted to share these lyrics to  "Holding You"  by Matt Hammitt

Mother in a waiting room

Wondering if she'll hold him soon

In the darkness searching for some light

People say, "It'll be alright"

People tell you to hold on tight

But what do you have to hold onto tonight?

Where will you find peace when you cry?
In these hard times it's not in what you hold on to
It's in the one who's holding you tonight

It's like staring down a wishing well

The voice inside cries out for help

But you've never felt so helpless in your life

And time becomes the enemy

'Cause you just got to wait and see

While all the world is simply passing by

Where will you find peace when you cry?

In these hard times it's not in what you hold on to

It's in the one who's holding you tonight

You are safe in the arms of the Father
You are safe in the arms of the Father
You are safe in the arms of the Father

You are safe in the arms of the Father
You are safe in the arms of the Father
You are safe in the arms of the Father

Where will you find peace when you cry?

In these hard times it's not in what you hold on to

It's in the one who's holding you tonight

Where will you find peace when you cry?

In these hard times it's not in what you hold on to

It's in the one who's holding you tonight

We found our peace in God.  We have been hugely supported by family and friends and have covered by prayer literally throughout the world.  We started this blog so the people we love could be updated on our life and would know how to pray for our son.  It has become so much more.  To receive notes and cards that this little guy is an inspiration brings tears to this mamas eyes.  God has given us sweet glimpses of how he is using our sons life for his kingdom.  

We never woud have thought we could make it through something like this but God is bigger than our greatest fears and if you put your trust in Him he gives you the grace and strength to make it through.  

Thank you for being a part of this journey =0  

Here are some pictures from the past few days.

His first bath

Such a handsome little guy!

Not the best picture...but he has started to smile =0)

Just wanted to let you know that we are all settling in well.  Joe and I are exhausted...but that is expected.  Stephen is doing so well.  He is continuing to put on weight and is looking cuter than ever!  Tomorrow we have some follow up appointments at Rady's.  I am actually excited to go back...I kinda miss it there.  It will be nice to see some of the people again. =0)

The hardest part about being home is not being able to share this little guy with everyone.  He is so stinking adorable and we would love for everyone to see him, hold him and love on him. etc.  But unfortunately it is not what is best for him.  So instead I am going to have to dress him up and take tons of pictures.!

My 3 boys!

Such a little peanut

Sporting the "Joe-Hawk"

Does it get cuter than this?

Love that face!

Thank you all for your continued pray and support.  This little guy is such a miracle =0)
Please continue to pray for his little heart and that he would be protected from illness...especially mine.   I have been getting sick which is a bummer and don't want to pass it on to this little guy.
Much Love to you all!
The Russells

Happy Mother's Day!!!

Well we survived our first night home!  We basically got no sleep...but that was expected.  Stephen slept well but his monitor went off every 20 minutes.  When the doctor called this morning she said he doesn't need it through the night unless we want it for a peace of mind.      Part of me likes the idea of knowing he is hooked up to something, but the other part knows I need sleep and can't live like that.  So tonight we will attempt to unhook him and see how it goes.  
Today we had his first home care visit.  It seemed pretty silly.  They listened to his heartbeat and weighed him and will then charge my insurance company $500.  He is continuing to do so well.  He is now 9lbs 15 ounces!  That means in under a month he has gained almost 2 pounds form his original birth weight despite 1 1/2 pound weight loss from the whole not being able to eat and having heart surgery thing.  This kid is seriously a champ in that department!  Please continue to pray that this keeps up. I guess eating can still become more tiring on his heart so they will continue to monitor his weight gain to see if he will need to be supplemented. 
It was so perfect that today happened to be Mother's Day. 

This morning I woke up, from the little sleep that I did get, to my kiddos bringing me breakfast in bed.  They made me M&M pancakes, sliced apples and juice.  Last night Michael asked me if I could stay in bed after they all got up so they can make me a surprise.  I love how excited they are about giving and doing something special for people.  They had such joy on their faces when they each carried their item into me.  I hope we can continue to instill the joy of giving in their little hearts.  I feel so very blessed and loved by them =0)

 Becoming a mother opens your heart to love in ways you ever thought possible.  I am so grateful for each day with these little blessings.  

Everyone asks who Stephen looks like...you tell me?

Michael

Elizabeth

Audrey

Stephen

Have a lovely night!