WOW Anita! You are 3yrs old

WOW baby girl, you are more than 3 years old now.  You did go into the hospital 2 times in April, but came out OK.
Just before your birthday Grandma and Grandpa McCone came to visit and saw you AT HOME for the first time. They have visited you before, but you were always in the hospital. They stayed a few days and had lots of fun, and you loved it when Grandma cuddled you.  You had a very happy birthday with lots of friends and family.
You have the doctors confused because you keep changing so much.  Some Drs. have very high hopes for you but some don't. The ones that don't have to deal with daddy and I tell them that only GOD knows what will happen. In the meantime you have nurses all day and night every day. Everyone loves you very much.  Mommy and Daddy just love to enjoy you and make you smile so big every single minute of everyday. You seem to be getting stronger everyday too and that makes everyone happy.

Just remember my lovely baby girl, Anita Rose Bushak what Daddy said when you were first born.  DADDY'S HERE, EVERYTHING IS GOING TO BE ALRIGHT!

Feb. 2013

It has been so long since I wrote you a letter I almost forgot how to.  You were home for the holidays again this year, except for New Year's Eve when you wanted to go out with your friends so you went to your favorite hospital close to home and were back the next day.  Daddy needs to teach you about a thing called curfew because you weren't home until noon on New Years day.  You had been needing more and more oxygen, even though you were off of the vent since June.  You had to go back into the hospital on Jan. 16.  On Jan. 21 you gave us another big scare, the 6th or 7th time you've done that.  They put you back on the vent for 24 hours a day and you finally got to come home on Feb.8, 1 week ago today.  You did loose your day nurse, Oscar who has been with you for 2 years now, but kept your night nurses and your new day nurse is already falling in love with you.  You have had a few appointment's and have alot more over the next month. You haven't started therapy yet but we hope you can soon. Even the people at the hospital noticed how strong you have gotten.  We hope you can get off of the vent again soon but that is up to you and the Dr's.  Stay strong baby girl and keep getting better.  Daddy loves you so much that he sometimes gets scared, but then he remembers that God has his own special plan for you and right now all daddy can do is keep helping you get better, even when it makes doctors and nurses mad.  They might have gone to school for a long time and had alot of patient, but I am pretty smart and  only have 1 patient, YOU.  I love you Anita Rose and always remember what I first told you, "It's alright, Daddy's here" I love you baby girl, Daddy.

September 29, 2012

It sure has been a long time since I wrote you a letter.  The day after my last letter you got really sick and scared everyone, but you ended up O.K.  You took another plane ride to Corpus Cristi, But no surgery.  The Drs. there just added a new medicine to help make your heart work better.  You got home on April 25.
While you were in the hospital we had Easter.  You got dressed up and they let us put you in your chair.  Mommy dressed like the Easter Bunny and took candy and treats to all of the kids on your floor.  You even got a few other baskets from other sick kids.
In May you celebrated your 2nd Birthday.  You had neighbor kids and other friends like Nixia's kids.  You had a BIG pinata and cake and presents and everyone had a great time.
In June you got permission to go off of the ventilator (you had been on it for 12 hours a day).  It only took you 2 days before you didn't need it at all.  In July you needed it for a few days because you got sick and had to go to the hospital for a week.  You also needed it for a few days earlier this month when you got sick and had to go to the hospital.  Now you are doing just fine and don't need the ventilator or oxygen.  We want to get your trach removed because that is what keeps making you sick.  That decision is up to the Drs. though.  Otherwise you are doing everything you need for you heart surgery.
You are doing great in therapy and even roll over for daddy in the bed sometimes without fighting.  You smile and reach for people and things.  You open your hands more and hold some of your toys.  You even try to talk, you don't care if you have a trach or not, you just do things your way, and that's one of the reasons I love you so much.
Now, let's just stay healthy for the flu season and stay happy.
I Love You Anita Rose.  It's alright, Daddy's here.

It's been a whole week.

Well Baby Girl Anita, we've been in the hospital for 8 days now.  It turns out that you had several infections so it's good that you had to come here.  The Drs. all think that you are getting better and I do too.  Mommy has been getting better and has stopped by a few times in the last few days.  She may even be well enough to stay with you in a day or 2 so daddy can get some rest.  Otherwise you are getting better and everyone here loves you and treats you so well.
Just get better soon baby girl.  I Love You Anita Rose.  Always remember,  Daddy's here, everything is going to be alright.

March 2012

It's been a very long time since I wrote to you, but that is because I have been spending so much time with you. You made it through your first holiday season at home!  You were home for Thanksgiving, Christmas, and New Year. At Christmas you got alot of presents, but your favorite was the wrapping paper.  You even ate some of daddy's polenta, and loved it.
You were able to stay out of the hospital all winter long.  You have had a few coughs and colds, but we have been able to treat them at home.  We really like your new lung Dr.  You stayed on your vent for 12 hours a day, but did great even without it.  Then at the end of February the Dr. said we could start taking you off of the vent a little at a time.  You only needed it for 8 hours a day the first 5 days, then you got sick.  You had to use the vent for 12 hours a day, then almost all day, then we even had to add some oxygen.  That's when we knew it was time to go back to the hospital.  You were nice enough to wait until the day after my birthday.  Now you are in your favorite hospital close to home, and daddy gets to stay in the room with you.  Mommy has a really bad cold too, so she is staying at home until she gets better.  The Drs. and nurses here know you real well and haven't seen you in so long.  They like that you are getting so big.  I hope that you get better quick so I can play with you some more.  I don't like when you have to go to the hospital, but you got too sick and this is the best place to get you better.
I Love You Anita.

What a mont and a half. Oct 1,2011-Nov. 10,2011

We started off the month by taking you to the hospital because you were needing more oxygen.  They sent you to Corpus Christi again to be checked out.  We did get you off of the ventilator for about a week.  Then you needed a surgery called a Modified Blallock-Tausig Shunt.  It is a piece of gore-tex that goes from an artery in your arm to your pulmonary artery.  There is a beautiful movie that we will watch with you about how the Doctors a long time ago invented the surgery called Something the Lord Made.  Mommy was sick for a while when you first went to Corpus Christi.  Daddy had to argue with Drs. and take care of you while Grandma and Grandpa McKinney took care of mommy and Grandma McCone flew down from Seattle to be with daddy, and of course you.  Mommy was in Corpus Christi real fast though and Grandma and Grandpa McKinney came to visit you.
     You had the surgery on Oct. 20 and came home on the 24th.  You had alot of doctors visits when you got home.  After about 10 days you were still having trouble breathing.  You didn't need oxygen, you just had to work to breath.  We did have to takke you back to the hospital, then again to the hospital in Corpus Christi, for 6 days.  You are getting much better now.  You still need the ventilator for 12 hours a day, but you will see the lung Dr. next week so that might change.
     In the mean time, you were home for Halloween this year.  It was your first Halloween at home.  You dressed as a Pumpkin, sat in the living room and watched all of the other kids come to see us and you saw mommy handing out candy.You are also over 18 Months old now and are getting so big.
     I Love You Anita, Love Daddy.

End of September 2011

It has been over 7 months since we came home and you have been getting stronger and healthier.  You only use your ventilator for 3 hours a night and next week the doctor is going to let you go without it.  You breath on your own all of the time and have become very used to your trach.  We found out on Friday that you might have your trach removed before Halloween.  We are all so happy.
You go to therapy 3 days a week and you are getting stronger and more importantly, more coordinated.  You like to smile alot and kick your feet and move your hands.  You grab things, but usually only mommy and daddy.  You are just starting to taste things.  You like chocolate cake batter, that was mommies idea, but you liked it.
We also have the nurse schedule set regular all week long, and on weekends mommy and daddy take over, although we mostly use the nurses as your secretary more than anything because mommy and daddy do everything anyway.
You are a very loved girl with a little angel on your shoulder.  I Love You Anita Rose Bushak, Daddy.

More time in the Hospital

I am sorry that I haven't written in so long but alot of good things are happening now.  First, you only use your ventilator at night and all of your doctors think that you will get your next scheduled surgery before Christmas.  That is good news.  After last year nobody wants to be in the Hospital for the holidays.  Second, you started therapy about six weeks ago.  You go 3 times a week and you get physical, occupational and speech therapy.  You are becoming more playful and active.  Last, you got glasses. Mommy and daddy have glasses too, but you look so cute in yours.
For now however, you are in the hospital to get your heart and lungs checked out.  They think you can go home after 2-3 days.  I Love you Anita.

A quick stay at the hospital.

Last week you had a few short seizures.  We had to take you to the hospital, but it was your favorite hospital.  The nurses and doctors there had not seen you since October and I guess they were talking about you last week.  You had everyone come visit your room and they were all so surprised at how big you had become.  The doctors just added a new medication and you only had to stay for two days.  Everything is alright and you will see your neurologist soon.  Otherwise you are doing great, being off of your ventilator for 8 hours a day and 10 hours a day staring tomorrow.  I love you Anita.

One Year Old!!!

On Monday you turned One Year Old!  That was a very special day for the whole family.  We are so glad to have you in our life.  We had a party and alot of friends and family came.  Even more sent presents and cards for you.  Everyone knows how special you are.
Another step came last week.  You started going off of your ventilator for 2 hours every day.  You only need an "artificial nose".  This week it is 4 hours every day.  Every week we will increase it by 2 hours a day. That means that, if you can handle it, you will be off of the ventilator in less than 3 months.  The doctors can then decide when to do your next heart surgery.  Otherwise you have been very healthy.  You even got your first dentist visit yesterday.  You are growing so fast I can't even believe it.  I love you Anita, Daddy.

First Easter

Today was your first Easter.  This is a very special day that you will learn more about as you grow up.  We had a friend who is a professional photographer come and take pictures of you in your first Easter dress, as well as some pictures of the whole family.  This was the first time that we had formal pictures taken of our family.  You were able to go without your ventilator for almost an hour.  You have been getting stronger and going off of your ventilator more and more every day. You have been out of the hospital for over two months and staying healthy.  Your doctors are all very impressed.  The brain surgeon said that he thinks he fixed you in Corpus Christi and won't need to see you again.  You love all of your nurses, especially when we don't have one at night and daddy stays up and watches movies with you all night.  Your first birthday is in just over two weeks and we are going to have a party for you.  You will then be ONE YEAR OLD!!!  Mommy and daddy are very happy to have you in our lives and we do everything for you that we can to give you a good life.  I love you baby girl and will write again soon.

It's been a while

It's been a while sweetie, over a month in fact.  That means that this is the longest that you have ever been at home without being admitted to the hospital.  You also saw your pulmonologist (lung Dr.) today and he told us to reset your ventilator so that you beath more on your own.  That also means that you can have your next heart surgery soon.  Mommy and daddy are very happy and love you so much.  You are starting to act playful now and have a few favorite toys that you like better than others.  You are so strong that last night I tried to sit you up and you stretched your legs and stood (with my support).  We just love you every day and do everything to help you catch up.  You are becoming so big.  I love you Anita, Daddy.

March already!

I just realized that it has been 2 months since I wrote in here.  Since then alot of great things have happened.  First, on January 31 you got to go back to Driscol Children's Hospital in Corpus Christi.  The doctors there started turning down your ventilator and making you breath on your own more.  You need to breath on your own to get your last 2 heart surgeries.  Then on February 14, Grandma and Grandpa McCone got to see you.  Later that day you had another operation to "drain your brain".  The surgeon said everything looked great.  Then on February  22, WE ALL CAME HOME.  You get more nurses now, but sometimes we don't get one at night and daddy stays up and takes care of you.  You have stared getting your days and nights straight again and usually sleep at night, unless you want to party with daddy.  You started seeing your doctors again, and they are happy to see you.  You are now almost 9 pounds bigger than when they last saw you.  You are also getting a few new doctors.  The best news though is that your pulmonologist (lung doctor) has been helping make you breath on your own more by turning off your ventilator for a few hours a day and you are doing GREAT at breathing on your own.  You are so strong that I think you just want to prove the doctors in Houston wrong.  For now we are all just happy to be home.  Your Uncle Gene (whose daughter you are named after) came down from Oregon to see you and loved how cute you are.   You also have your own room now with a new and colorful hospital crib and mommy put fishies, jellyfish, and other sea creatures hanging from the ceiling.  We hope to stay home for a long time now and only go to the hospital for planned operations.  For now we just enjoy every day (or night) that we can with our special baby girl, you.  I Love You Anita, Daddy.

A Whole New Year

I know it has been a little while since I wrote and a lot has changed.  For one, it is now a different year, 2011.  You have been getting much more healthy.  You got a surgery to remove extra fluid in your brain left from your stroke (which was a success), you got moved out of the Pediatric Intensive Care Unit (PICU) and into your own room, mommy and daddy moved out of the motel and into your room at the hospital so we can all be under one roof all of the time.  The nurses are helping mommy and daddy take care of your daily trach care and suctioning to keep your lungs clean and clear.  The doctors are also helping get you to a hospital close to home so we can be back home soon.  I can't wait until we are back home, but even sleeping in your room every night is a step closer.  I love you so much I can't even say.  I Love You Anita, Daddy.

Your very first Christmas!

Today was your very first Christmas.  There was a tree with lights and ornaments at the end of your crib.  Your crib was FULL of presents and stuffed animals.  You got toys, clothes, more stuffed animals and some blankets.  You even got a camera so mommy and daddy could take even more and better pictures of you.  You slept most of the day but when you were awake you were very surprised and excited to see all that you had got.  We Love You Baby Girl, and we will be home soon so you can take full advantage of all of those new toys.  Love mommy and daddy.

Almost your first Christmas!

Well it has been a while since I wrote, but you have kept me busy.  You were going to have your heart surgery, but you had a stroke the night before.  You also had seizures like your daddy has.  The doctors are giving you the right medicines for your seizures and your stroke.  You are almost off of the strong medicines and you are breathing on your own more than the machine is helping you. The doctors want to wait of your heart surgery for a while so we are now trying to get you back home to our "regular hospital" to finish your recuperation.  The most important thing is that you are getting healthier.
Meanwhile you have had a few visits from a man named Santa Clause.  He dresses in red and brings you toys.  He also has a big, fuzzy beard.  We all love you and people all over the world are praying and thinking about you.  Everyone loves you.  I love you and remember, no matter what,"it's alright, daddy's here".

Your first Thanksgving

Well baby girl, today is my first Thanksgiving as a daddy.  You are still in the hospital in Houston, but mommy and daddy came to visit.  Mommy painted your hand brown and pressed it onto some paper to make "hand turkeys" for our family.  You watched the parade and dog show on t.v. and smiled and laughed.  You have your heart surgery set for Monday.  The doctors hope that you will get better and have you at least in a hospital near home, if not at home, by your first Christmas.  Daddy has to go back home Tuesday and Wednesday and will bring back the tree and ornaments just in case we are still here for Christmas.  You are so beautiful and precious I just want you back home, but your health is more important.  Don't worry though, we will have many happy holiday seasons to go as you grow up.  I will see you tomorrow, as I do almost everyday.  Love, daddy.

Week 3 in Houston

Well baby girl, you are you're own person for sure.  You got a big butterfly balloon for your 6 month birthday and loved it.  You stare at it for hours and smile and laugh.  Yesterday you were supposed to go in for the catheter procedure, but the anesthesiologist could not get you to go to sleep.  They tried giving you more medicine, but you stopped breathing.  They used a ventilator (breathing machine) and a special balloon to keep you breathing.  They decided you weren't ready so they will try again next week.  Mommy says that this is your new way of throwing a temper tantrum.  You also surprised us by making sounds.  You laughed and cried.  You have already learned how to push air past your trach tube to make sounds.  We are so happy.  Meanwhile, mommy and daddy are learning how to take care of your trach tube by keeping it clean and comfortable.  We practice every day.  We hope you will be able to have your test next week so the doctors can decide what and when they want to do to fix your heart.  The sooner the better so we can all get back home, but all in your own time.  I love you baby girl, Daddy.

Houston, a whole new world.

The doctors in Corpus Christi decided it was best to send you to Texas Children's Hospital in Houston, Texas.  The doctors here (in Houston) put a tube down your throat again to check things out.  These doctors were more specialized and had better tools though.  They decided you needed a Tracheostomy.  A surgery where they put a tube in your throat so you can breath easier.  Now they are going to put another tube up your leg to check your pressures again.  After that they will decide what to do with your heart.  This is a great hospital though, and even though we are so far away from home, we are always together as a family.  I will write more after the doctors let us know what is up next. 
Meanwhile, tomorrow you turn 6 months old.  Mommy and Daddy are so proud to have such a brave and strong daughter.  We never knew that such a little baby could make us stronger and happier.  We love you baby girl.  Daddy.

Back in Corpus Christi

We were only in your old room for one day when the doctors decided to send you back to Driscoll Children's Hospital in Corpus Christi, TX, where you went right after you were born.  This time you got to fly in an airplane and mommy got to go with you while daddy drove.  Mommy said that you liked to fly.  The day after you got here a surgeon put a tube up your leg vein to your heart to check your pressures.  They were too high.  A few days later another surgeon put a scope down your throat to see why you had so much trouble breathing.  It turned out that your throat below your below your vocal chords was really small, only about 3mm.  Tomorrow the doctors and surgeons will meet on what to do next and how soon.  Remember baby girl, it's alright, daddy's here.