Saturday, December 31, 2011

~~ 2011...What a year!! ~~

So today marks the last day of 2011.  Wow.  I'm amazed that we are at the end of a year that has brought many MANY great times, many tears, many scary times, many stressful times, many happy memories and a lifetime of BLESSINGS!

I thought being that we have a little over 2 hours left in 2011 a little recap of our family might be in order. Here is a little update on each of us.  :-)

Nick ~  Is still working at Principal.  He is a Manager/Internal Wholesaler on the Life sales desk. He really loves his job.  He works with great people and does enjoy going to work "most days."  :-)  Principal has been great to us, especially at the end of this year.  They allowed him to work from the hospital during our visit.  It allowed us to maintain our income, not burn through our PTO and keep ourselves busy during our visit.  Nick is still playing in Risen, the praise band from our Church.  He has been at this for over 5 years.  While it does force me to watch over the kids when they don't want to go to the nursery, they LOVE watching Daddy playing guitar.  It is also a wonderful worship experience!

Jenny ~  I'm still at Wells Fargo.  I've been there for almost 8 years.  I also have a very wonderful job that supported me during our visit.  Allowing me to work / and use PTO to care for my son.  It is such a blessing to say that I work for a company who cares about their team members's families.  I've also been trying to find every opportunity to keep up on my running.  I've been having to run on the treadmill more lately as we lived in our "bubble" for Birk.  I've made due.  I was planning on running a marathon this year as I turned the dreadful 30 this year (YIKES), but since we found out surgery was at the later part of this year I decided the year I turn 31 would be better!  So, everyone PRAY FOR ME!  :-)  

Birk ~ is now trache free.  He is just the same sweet little boy that we all love.  He recovered so fast from the surgery and is running, laughing, and enjoying opening presents this holiday like the rest of us.  This year brought many great things for my sweet 2 year old boy.  He loves to play baseball, football, basketball, and LOVES TO WRESTLE on the floor with his Daddy.  He is also very much in love with anything CARS.

Addy ~ is a typical female!  :-)  She is full of sass with a strong personality who is also very loving and motherly to her brother (and anyone else she can boss around).  She loves PINK anything, loves to color and taking care of all of her babies.  She also loves to play outside, and ride her bike.

This year really taught the Ankeny Robertson's how much the Lord can provide for us.  He has shown us miracles that are right in front of our face and how to truly appreciate them.  We had the great opportunity to make new friends at Cincinnati Children's hospital and were even somewhat said when it was time to leave.  We have made the decision to begin volunteering at the Ronald McDonald House in the Des Moines area given how much they did for us in Cincinnati.  We hope 2012 brings us as many great memories as this year.  We also hope that you are blessed with a wonderful year!

God bless you!!!

Nick, Jenny, Birk, and Addy Robertson
December 31st, 2011  ~~~

Wednesday, December 28, 2011

~~~~~ Christmas 2011 ~~~~~

We were able to spend Christmas in our HOME this year.  Here are some pictures of our wonderful day with family.  Merry Christmas!


Grandpa and Uncle Austin are watching Addy operate my iPhone.  That girl can run it better than I can!  

Yes!!  A Barbie camper to go w/ the Barbie Dream House she got!  One lucky girl this year.  

Happy Boy!!

Happy, Silly little Christmas girl.  

Most Sweet.  

Our little Cyclone playing his sister's piano.  

His new jersey like Daddy's.  

The QB! 

Can you tell what his favorite team is?!?!

Playing Cars with Uncle Austin.  

New sparkle shoes.  

They fit her personality.  :-) 

Birk got a remote control Mustang, similar to the one Santa brought Daddy.

We had to go outside and run our cars for a while.  We even did it in our PJ's.  

Nick even wore his slippers.  :-) 

Merry Christmas!!  ~~

Cincinnati Pictures

Here are some pictures that we took from the hospital room in the PICU.  

This was the day after surgery.  It was bittersweet to see our sweet boy looking like this.  We went from him up and running around the night before to this.  

This was the first day after they had downsized the ET tube.  There was a leak right away which was good news for us.  That meant the swelling was down quite a bit and he was able to breathe around the tube. 

His PICU room.  So many machines!!  :-( 

This was his IV rack.  He was on so much medication to keep him sedated.  It was difficult at first, but then we found his "happy medicine."  The top one was Morphine, the middle was his Dex, and the bottom was the Ketamine. On the back was his antibiotic.  Poor dude.  

Lighting McQueen watched over our boy all the time.  Especially when we couldn't be in the room.  Now he sleeps every night with him.  Best $26 we EVER SPENT.  

Watching your child be tied to a bed is brutal.  We knew the reason, but it was tough to see.  

One of my favorite pictures.  :-) 

Lighting and Mater!  :-) 

Here is Nick working away.  We tried to get as much work done as we could while in the PICU.  We knew that would be challenging after Birk woke up.  We were right!!!  

~~~~ Thank you for living this journey with us.  ~~~~


One thing that we've been discussing quite a bit in our house is our "new normal."  It seems so surreal to us that we are even home at this point, but that we don't have to take a suctioner everywhere we go, Birk doesn't need a trache tie change every day, we might not get too much more nursing coverage and that our lives will return to normal (well, semi-normal) after this week.  While it is sad to think about not being around the kids all the time any longer I'm excited to get back to reality. Nick went back to work this morning and I return next Monday.  I'm excited for Birk to start daycare full time (not exciting about paying for it though...  :-)  ).  Thanks to everyone who has helped us get to this point.  It is a good feeling.  

Here is to hoping you're reality is as great as ours!  :-)

God Bless you!

Monday, December 26, 2011

I. Am. Tired.

But happy.

Christmas day has come and gone and I have to admit this was one of my favorites yet.  The best part of the holiday was BEING HOME!  We could not have asked for more.  It was also great because our kids are at a great age and loved opening presents, loved playing with them and just had an all around wonderful day.  We were so thankful to be surrounded by the Robertson family and in our own home.  It was just such a blessing.

We were beyond excited to return back to our Church after a month (for me it was close to 3 months).  We were welcomed back with open arms and even got a chance to sing/play

Today we spent the day with my sister and her family.  It was a lot of fun to see my niece and nephews and their significant others.  They showered the twins with gifts and love which has been such a welcomed surprise since we returned home.

We wish everyone a very Merry Christmas.  Our wish is that you experienced as much joy in this season possible.  May you be surrounded with the light of Christ and the peace that his love brings to each and every person.

God Bless you!

Saturday, December 24, 2011

Merry CHRISTmas

Merry Christmas to everyone.  May this be the most blessed time filled with happiness and joy for you and your family.  May each and every one of you find a peace this season that can only come with the birth of a King.  May you rejoice in the ultimate gift that Christ gave to each and every one of us.

May you also experience the innocence and joy that Christmas brings in the eyes and experiences of a child.  For there is a wonderful joy that comes with falling asleep on Christmas eve with the excitement of knowing what is to come.

Merry Christmas....

Happy Birthday Christ the King!

There is no place like HOME!!!

And Home is IOWA!!!

Man, it feels good to be home.  We made it to Iowa in great time.  We decided that since we hadn't finished our Christmas shopping we would stop in Iowa City have some dinner and finish it up.  We stopped at Coralville Mall first and got a few things...then to dinner.  Birk had ordered Mac-n-cheese so we decided that we would stop at Steak and Shake.  After a quite delicious meal we headed to a few more stores almost finished our shopping and headed back on 80W.  We got home around 10pm.  Kids were both asleep.

We did B's med's quick and put them down.  It was an amazing feeling to watch Nick lay him back down in his bed, w/o a suction prior to bed.  He was EVER SO HAPPY to lay his head down on his pillow.  Praise God for allowing us to get home safely and in time for Christmas.

Bless everyone this wonderful time of year.  Bless your families, bless your time together.

We are all blessed because of the birth of Jesus.  Thank you Lord for the most wonderful gift I have ever eternal life with my King!

Merry CHRISTmas!!!

Luke 2:11 For unto us in the City of David a child is born...

Thursday, December 22, 2011

Textbook example

Is what they referred to Birk this week regarding his progress and his healing.  We had another scope this morning and the ENT team said everything still looks GREAT.  Praise God.  They wanted to keep him over night, only due to the fact that he had a general for the procedure and wanted to make sure his breathing was ok after the surgery ONLY 2 WEEKS AGO!  Can you believe that?  When we heard about this surgery we were told we would be here for 4 weeks...maybe more, and now we are going home in 2 weeks.  I'm in awe of my son, and even more in awe of God.  Man, You do good work God.  How can I not just stand amazed at your wondrous works.

So, Christmas will look a little different than we expected this year.  Yeah!  We are so pumped to get on the road and get home and sleep all together as a family and in our own home!

We've made some pretty good friends during our visit.  Mostly nurses, RT's, and doctors.  We will miss seeing them regularly and THANK THEM for all that they have done for our family.  You not only cared for Birk, but you cared for all of us.  The work you do is changing lives.  I am forever in debt to the ENT surgical team here at Cincinnati Children's for what they have given to my son.  You've given him a future.  You've given him a normal life.  As a have no idea what that means to me.  So, from the bottom of my heart....THANK YOU and GOD BLESS EACH OF YOU!

Wednesday, December 21, 2011

~~So much fun~~

Is what we had today.  We thought we were going to be discharged today, but when we decided not to we were given a pass out.  We decided to try the Newport Aquarium.  It was well worth the money.  THe kids had a blast and it was nice to be a family again!  The aquarium offered us lots of fish to see, and even a shark tank that we could walk over and under and then see from the top.  It was amazing.  I'm not sure who had more fun....Nick or the twins!

We were going to try and see the Festival of Lights after, but the kids were very tired and we hadn't eaten dinner yet so we ventured back to the hospital.

Tomorrow is our scope at 11 EST.  We hope and pray for good results as that would potentially mean we would be back home for Christmas.  What a blessing that would be.  However, we aren't going to push it for Birk.

I also have a special prayer request tonight.  I don't know the name of this sweet baby or even his mom for that matter, but I do know that he is in the NICU here at Cincinnati Children's and she is from Storm Lake, IA.  She is a friend of a great friend of ours and by the Grace of God we ran into her today in the elevator.   We introduced ourselves, shared stories and even shed some tears.  She is a very heart broken and discouraged Mommy.  There isn't a lot of hope in her heart right not for her sweet boy, who is struggling and who will likely be trached.  Please pray for healing for him.  Pray for his family that God will comfort them and hold him in his palm, as he did for Nick and I when we went through that dark NICU time.

If I ever run into this sweet lady again I will remember to tell her something a friend told us when Birk and Addy were in the NICU; "What He brings you too, He will bring you through."


I see the light....

So there was talk of a discharge today.....  HOWEVER, we made the decision to stop that talk.  Don't be confused, it isn't because Birk is doing bad, because its quite the opposite.  He is doing great.  Had a great night last night.  Kept his sat's between 97-99%.  Praise God!  He is eating good, although he is still recovering so he is fairly tired.  That is normal.  We decided to stay one last night due to insurance.  We have already been pre-approved for an inpatient procedure for his scope tomorrow and if we change it now we would need pre-authroization and depending on how long that take that might hold us up and the procedure would be delayed.  The doctor did give us the best gift for today though.  We get a pass out to take the kids some place fun!  Yeah!  After naps we are headed to the aquarium and then to the Festival of Lights at the zoo.  The kids are so pumped and we are delighted to get to do something fun as a family after the last 3 weeks of our lives (Well, truthfully the last 2 months, and even the last 2 1/2 years).

Today I rejoice in miracles.  When I start to ever doubt that things happen for a reason I need to remember where we are at today.  All the waiting, all the praying, all the fears, all the is worth it.  God gives us a life that we get to experience all of this and in the end we are stronger for it and hopefully have a life long relationship with our King.  Man, what a gift!!!

Please rejoice with me today for the miracles in our own life.  If you think you haven't experienced any miracles take a closer look.   Look at the people in your life, they are there for a reason.  Look at your kids, there is a reason you were picked to be their parent.  Look at your faith, there is a reason God chose YOU!

Merry Christmas week to all. :-)

Tuesday, December 20, 2011

One step closer

The feeding tube was removed this morning.  There is a small chance it will be put back in as Birk is having some difficulties with fluids.  We've been using a nector thickening substance to his beverages which seems to be working and just have to do medicines by mouth very slowly!!!  If he seems to not be tolerating this, then we will have to put the tube back in!  We are praying hard that we don't have to do this.  We love seeing his whole face!!!!

We also had a rough night oxygen wise.  He was sat'ing in the low 90's and high 80s's and the night team put him back on oxygen pretty quick.  They then told us that "you know, this means you're here for a couple more days."  What a bummer that was to hear.  We feel like we were given hope that we would get out this week, and then it was taken away.  However, this morning the Nurse Practitioner confirmed what I had suspected all night and confirmed that my mother's intuition is RIGHT ON.  We have to let Birk work to get his sat's back up.  We can't just give him oxygen or his body will start depending on it and not work.  It also doesn't teach him to move around and cough if he needs to...which is a lot of the reason his sat's are a bit lower when he is sleeping. He is so used to coughing to his throat area and then we would suction it out.  He isn't learning to cough that out just by giving him more oxygen.  He is just depending on us to fix the problem.  SO...I've asked if we can just do check's on his oxygen levels instead of continuous.  Then we deal with the alarms round the clock and not trying to solve the issue of why he is lower at night.  His extra secretions!!!

So, needless to say we are kind of stuck in a spot that brings us joy and frustration.   We see the light at the end of the tunnel and know he is doing great, but we feel frustrated that this oxygen thing is causing us such worry.  Please pray that this is resolved.  He seems to be a bit better today so we are hopeful tonight brings us peace and rest and he is ready for discharge!

Thank you for your prayers!  They are felt in Cincinnati from everywhere you are praying!

God Bless you today!

Monday, December 19, 2011

I'm not blogging as much

Which should be an indication to anyone following that our lives are a bit busier these day!  :-) Birk is doing great.  He is up, WALKING, TALKING and even today they  had him start eating and he did great.  He had some trouble couching after he would take a drink,  so they decided to thicken up the milk a little bit.  He is doing great with it.

One big prayer request we do need is for his night time routine.  He is sat'ing low 90's which from the hospital's perspective that means that he will require some oxygen.  Please pray that he keeps his sat's up high enough to not require any oxygen tonight.  That would mean we could likely be discharged from the hospital SOON and stay at the Ronald McDonald House until we are discharged from Ohio.  I know my boy and it sometimes takes him a little while to adjust to changes and I just wish they would let him ride it out for a while.  It just doesn't work that way here.  From what doctors have told us in Iowa it is ok to be in the high 80's and low 90's, however the hospital can't just let him "try to figure this out".  Please say a prayer that this gets figured out.  What we've been told is it could be the extra mucous in his airway or it could be still from the drugs he is on.  We aren't quite sure at this point.

He is having a blast with his sister.  We went to the play room today, they ran up and down the hallway, we went on several wagon rides, and we played a lot in our room.  It is so nice to have her here with us.

“Ask, and it will be given to you; seek, and you will find; knock, and it will be opened to you. For everyone who asks receives, and he who seeks finds, and to him who knocks it will be opened … If you then, being evil, know how to give good gifts to your children, how much more will your Father who is in heaven give good things to those who ask Him!” (Matthew 7:7-11)

Sunday, December 18, 2011

We are blessed

It was an amazing reunion between Birk and Addy.  They got to the hospital last night about 20 minutes before visiting hours were over, but we just couldn't bear not having her come up to see us.  Birk had a great evening playing on the play mat and sitting in his high chair playing cars with his cousins Charlie and Gus.  My sister made a yummy dinner (home cooked meals are the BEST!!!!), and we just at around and visited.  What a welcomed relief from the PICU where Nick and I only really had each other to talk to.  After dinner and play time, however, Birk was exhausted.  He fell asleep in my arms and when Addy came up we gave hugs, talked a few minutes and she headed back to the hospital.

This morning she got back up here around 8:30.  The Child Life Specialist came in with her so if Addy had any questions or worries she would be able to help us explain to her and deal with those in a good way.  Birk and I were already up and playing on the floor so very quickly Addy joined us.  The smiles between these two were non stop.  Addy kept hugging Birk and at one point came up to him and said "I'm so excited to play with you."  MELT MY HEART!!!!!  Birk was smiling ear to ear as well.  They played hard with Charlie and Gus again for about 3 hours and then as all the kids were getting tired and my sister wanted to hit the road we decided to wind it down.

What an amazing experience to see the true bond between B & A.  I know I say they are the best of friends and I do see them play a lot together and always want to be together, but this morning was a true testament to that bond.  They are so happy to finally be back together.

I have this quote in a frame in our bathroom at home and I wanted to use this as my prayer today!

"Children make life perfect!"  Erma Bombeck

Saturday, December 17, 2011

Not much to report


Birk is awake.  He was awake on and off yesterday, but still very shaky and would cry out every so often.  He slept a lot yesterday... Last night, however, he woke up smiling and wanting to play.  He was still pretty shaky and very unstable, but what a joy to see his face.  He slept pretty decent last night with a small wake up period around 9:30 or so until around 11.  He kept trying to sleep, but was sweating or moving and just couldn't fall asleep.  When he did fall asleep he slept until about 4:45 AM.  I slept in bed with him, and for those of you that know me...that was WAY TO EARLY FOR ME.  I didn't fall asleep until about midnight and then woke up pretty early.  I wouldn't change it for anything though.  Every minute I got to lay with him, see his neck and watch him breathe on his own was priceless.

He woke up pretty smiley again this morning.  Very happy, still tired and a bit unstable, although much more head control.

Due to his progress (which still amazes almost all that meet him here) we were moved from Critical care (PICU) to the Complex Airway unit.  Here is where we will live until we get to come home.  They make this feel as much like home as they can.  Their are wagons for the kids to ride in, strollers we can push him around in, we have a mat for the floor so he can get down and play.  We were consulted by PT and OT this afternoon and when they got here Birk was still a bit sleepy.  We laid him down and showed him Mater and Lighting (the large ones that were looking out for him last week).  He immediately started smiling, reaching for them, turning to get them and showing the PT person exactly what she wanted to see.  We ended up sitting him up, which he gave us a little resistance, but in the end did really well.  It helped that Nick got out a football that my co-workers had purchased for him and they started to play catch.  It was AMAZING to see him throw the ball just the old school Birk.  It was almost like he wasn't sleeping for a week.  We then got down on the mat and he was able to sit up by himself and throw the football to Daddy and play with his Cars.  I tried to have him stand up by putting a little weight on his legs and he just couldn't do that yet.  We hope soon....

The best part of the day was when they were playing Cars and Nick started to make some car  noises and Birk imitated the noises he heard.  So we asked him to say "Mommy", "Daddy", "Addy" "Birky" ....  AND HE DID!!!!!!!!!!!!  His voice is hoarse and kind of weak, but it was amazing to hear his sweet voice and to see so many signs of my little dude.

"Praise the Lord! Praise God in his sanctuary; praise him in his mighty heavens! Praise him for his mighty deeds; praise him according to his excellent greatness! Praise him with trumpet sound; praise him with lute and harp! Praise him with tambourine and dance; praise him with strings and pipe! Praise him with sounding cymbals; praise him with loud clashing cymbals! ..."
Psalm 150:1-6 ESV

Friday, December 16, 2011

Could God show us any more miracles?!?

So, as my previous blog announced Birk was extubated this morning.  We were ready for the worst.  We were told kids can go through days to WEEKS of detox.  Plus Birk was on some pretty heavy stuff for about 8 full days...and a lot of it from what they've told us.  Now don't get me wrong...we are not out of the woods, but I am so happy to report that he has had a great day.  He has slept most of the day, had some mild jitters in between naps in my arms and his daddy's arms and then tonight as if we weren't already proud of this I sat him up in bed to get some of the phlegm he has in his throat he saw the giant Lightning McQueen and Mater that we bought him on surgery day and started SMILING!  Yes, you read that right...he smiled!  He watched a video of Addy  and smiled, he smiled at Nick singing the ISU fight song and he even giggled at one point.  His voice is very raspy and quiet, but we were beyond overjoyed to see him awake, not as shaky as they prepared us for....and SMILING.

Praise God for this day.

The tube is out!!!

We went to the OR about 7:30 this morning.  The nurses took him to the OR and Nick and I went to the waiting area.  I immediately sat down and looked up and saw this women reading her bible (mouthing each word she read).  I bowed my head and just asked God to take this from me.  I will do the work that needs to be done for Birk, but this is his will.  He has guided us through this since day one (while at times I didn't see that).  About 20 minutes later we hear on the intercom "Family for Birks Robertson" and I take a deep breath. We proceed into Room 2 where Dr. Johnson, Dr. Cotton and Crystal our Nurse Practioner come into the room.  THe first words out of Crystal's mouth were "everything looks great."  Dr. Cotton then said "the tube is gone and he is breathing on his own."

We spoke awhile about the future.  We go back for one more MLB (scope) next Thursday and from what we've been told if everything looks good we might (and a BIG MIGHT) get released back to Iowa.  Can you even imagine?!?   We aren't getting our hopes up, but just praise the Lord that he is doing as well as he is right now.  We sort of feel like we are waiting for the ball to drop for the first complication (Other than the sedation issues)...  We relish in the good right now and just prepare ourselves for the challenges that MAY be ahead.  Hopefully he does great!!

Today I thought i would add my own prayer to the end of my post (I've also had some questions on my knowledge of the bible since I've been putting bible verses at the end of each...while I do read my bible and have been reading it often this week I'm not an expert...I  use google at times  :-)  ).

Dear God,
Thank you!  Thank you for the life that you have given to me.  Thank you for the challenges that you have presented with me and how you used those to show me the good that this life has to offer.  Thank you for the children that I get the privilege of raising.  What a blessing they have been to my life and what joy they bring to me.  I will do my best to continue to serve you and demonstrate the Holy Spirit through Grace and love!  

In Christ's name I pray!  

Thursday, December 15, 2011

Day 7 Pictures

Here is a picture of the scar on his neck.  This was the day the bandages came off.  It was pretty red that day, but overall I thought it looked great!  I keep telling just looks like a little cat scratched him!  

A little closer view.  

Even with tubes in his nose, I still think he is the cutest boy in the world.  

Taken a snooze.  A week long snooze!  :-( 

One of the three of us.  We had just given him a bath after a week (yikes, sorry nurses and doctors that he smelled like a foot...).  We spiked his hair to look like Daddy's!  We got lots of compliments on how stinkin cute he is!  

I came into the room to find that his arm was not restrained (uh, oh).  He was being a good boy, however.  I just love how he is holding onto the bed rail.  Sweet pea! 

Another one of his neck.  Can you tell I'm addicted?!?  I just love seeing his neck and "mooch" it every time I can! 

Gotta have a few laughs every so often.  We have become frequent shoppers at the cafeteria.  Here Nick was eating some Butterscotch pudding!  I can't even remember what we were laughing about!~  I'm sure he will be pleased this photo made the blog.  

Maybe a little less pleased this one made the blog!  :-)