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.

WERE BACK

You were home for 4 days this time, then at your cardiologists office, you stopped breathing again.  They had to call 911 and you got another ambulance ride.  This time you went back to the hospital we all like and even got your old room back.  Let's hope you get better quick this time and we don't have to stay too long, but you are not coming home until they figure out why you keep coming back.  They do like you here, but it is a hospital and no one likes seeing you have to come back so much or stay so long.  Daddy is taking the first 3 nights this time though so mommy can get her rest, but she will come every day to see us.  I Love You Anita Rose Bushak,  Daddy.

Three days home and back

After you were home for 3 days you stopped breathing.  Mommy called 911 and the ambulance took you to a different hospital.  I don't think the doctor there liked me because I knew more about YOU than he did.  When he did listen to me, he did what I asked and you were home in only 2 days.  Nixia took care of you that weekend,and you were home for your 5 month birthday.  Your daddy always did and always will fight for you because you are so special.  I love you baby girl, never forget that.

Your coming back home tomorrow

After almost 8 weeks at home you got sick again.  You couldn't swallow.  You went into the PICU again.  The doctors performed a surgery that made it so you would not throw up and swallow it into your lungs.  The operation went well, but then you got an infection.  When it was almost gone, you had a pic-line (that is a tube to give medicine and get blood from) come out.  You had to have another surgery to get a more permanent blood line put in.  That operation went well too.  Now we get to take you home.  You have given us a few scares this time in the hospital, but mommy and daddy were always there.  You have been here for 3 weeks now and will be 21 weeks old tomorrow.  The doctors and nurses love you and have been wonderful.  They even helped save your life a few times.  Now we start a new chapter.  You are bigger, have new toys and medical equipment, and will get a new nurse, at least until you can get Nixia back, she loves you almost as much as your family.  We will be so glad to have the whole family under the same roof again tomorrow night.  I Love You Anita,  Daddy

Thanks Gregg

I have to thank an old high school friend for many things.  I went to High School with Gregg Osborne and then, like most kids, lost track of him.  I got in touch with him recently through the Internet and he has inspired me.  He is the reason I started this blog.  He is also a reminder that everything happens for a reason and that we are never alone, even when things seem dark.  Thanks Gregg, and good luck.

When you came home.

When you finally came home to us we were so happy.  Grauntie Kim stayed for a few days, but then had to go back home to her family in California, so Grandma McKinney moved in to help us out.  The next day we met with a nurse service and you met Nixia, your first nurse.  She helped mommy and daddy alot and showed us alot about babies since she had 4 kids herself. She also went to all of your doctors appointments (there were alot at first) and helped babysit when mommy and daddy had to go out.  You did great for 27 days, but then you got a little bug and had to go back to the hospital NICU for 2 days.  The nurses and doctors all knew you so they got you healed quick.  About 2 weeks after that, we found out that you were allergic to the formula you were getting so you had to go back to the hospital.  This time though it was the PICU ward, a big kid room with a real crib and a bed so mommy or daddy could stay the night.  That only lasted 2 days though because they changed your formula and it was o.k.  When we got home you were still only 16 weeks old and 7 pounds.  Everything was great.  Daddy and mommy took turns with you every night, Nixia was there almost every day and Grandma was there every night.  You were (and still are) the cutest thing ever.  And to think that daddy never wanted kids.  If I would have known that I'd have you I never would have thought that.  I am so glad that mommy and daddy made you.  I love you baby girl. 

Your first 10 weeks

You are 20 weeks old today, but we will talk about the first 10 today.  After your first surgery the doctors tested you for your disability.  We were told it was called DeGeorge Syndrome.  We read about it and found out that that is just one name for it, that is why daddy calls it by it's real name,  22q11.2 deletion syndrome.  Mommy and daddy had a room at Driscoll Children's Hospital in Corpus Christi, Texas and would come visit the NICU ward every day to see you.  After about 3 weeks the Doctors did your first heart surgery.  About a week later you were moved to the Doctors Hospital at Renaissance Women's Hospital (where you were born) in Edinburgh, Texas.  That way mommy and daddy could move into your first house and come visit you every day.  You were only 10 minutes away.  You stayed there for about 6 more weeks.  Mommy and daddy came every day.  Sometimes we were there for so long they had to kick us out.  Grandma and Grandpa McKinney visited alot too, they only lived about 1 mile away.  Grandma and Grandpa McCone came and visited in early July and took lots of pictures.  They visited alot too.  After they went back to Washington you got a special visitor,  your godmother, Grauntie Kim came to visit.  She helped mommy and daddy get the house ready for you to come home.  Mommy and daddy stayed at the hospital in a private room with you so we would know how to take care of yo for 2 days.  On July 19, 2010, when you were 10 weeks and 1 day old, you finally got to leave the hospital.  Everybody was so happy.  You finally got to meet your first cat, Dixon Hill(Dixie) and your first dog, Spot.  We were glad to finally be a whole family at home.

When you were born

You were supposed to come to us in the middle of June 2010, right after mommy's birthday.  In April, mommy started getting sick.  The Doctor told her to rest and gave her some medicine for high blood pressure.  In early May the Doctor made mommy go into the hospital.  Daddy visited every day.  On May 9, 2010 (Mother's Day) the Doctors said that we couldn't wait, you had to come out.  There were 2 sets of Doctors, 1 for you and 1 for mommy.  You were born and they showed you to us but then had to take you away, because you were sick.  Mommy called me and said that they were taking you to a special Kids Hospital in Corpus Christy in a helicopter.  Mommy had to stay at the hospital in McAllen to recover so Grandpa and Grandma McKinney took daddy to you.  I met the Doctor right before you're first surgery and he explained everything.  That was when you held my hand and I said "it's alright, daddy's here."  Before I knew it you were back from surgery and a few days later, after she recovered, mommy came too. 

When I first heard about you

Mommy had left for Texas to take care of Grandma McKinney while I was in Utah taking care of Great Grandpa and Great Grandma Bushak.  After 2 weeks, mom called and said "We're going to have a baby."  I didn't know what to think except "Wow, I'm gonna be a daddy."  A while later, maybe a month, mommy sent me the first sonogram picture.  I was so excited.  Even though me and mommy were 2000 miles apart, we were closer than ever.  We talked and e-mailed alot.  We picked names.  When mommy told me you were a girl I got very excited, but a little scared because I know what boys are like and had no idea about raising a daughter.  When I moved to Texas you were already for me.  When you would kick mommy, I would just rub her belly and whisper to you "it's alright, daddy's here."  You must have remembered that because after you were born and flown to Corpus Christy, I showed up in the NICU just before you're first surgery.  You grabbed my finger with your left hand and looked up at me and I said, "it's alright, daddy's here."  I'll never forget that look that you're beautiful eyes gave me.  So no matter what happens in your whole life just remember, "It's alright, daddy's here."

My First Post

You are in the hospital (again) at 19 weeks and 2 days.  After 10 days I made mommy stay home (she worried herself sick staying here with you).  You are so precious and beautiful that I just want to stay awake all night and stare at you sleep.  We ordered your crib today and we hope to bring you back home again soon.  We want you healthy before that though so a few extra days here won't hurt.  Everyone here loves you and fights to have you on their schedule.  I love you so much that I can't say anymore.  I need to get you changed and fed anyway so I can get my sleep.  I love you Anita Rose Bushak, my one and only.