Tuesday, March 26, 2013

My Best Friend Hannah

Hannah,

We have become best friends over the last 11 months.  Ever since your mother found out she was pregnant, you and I have spent so much more time together.  Your mother had a hard pregnancy and spent a lot of time feeling sick.   Though I feel terrible for her, this may have been a blessing for our relationship.  Up until this time, I had never really spent as much time with you doing the everyday things that make you special as your mother always did these things.  Over the last month I have had more fun, taking you to school (even though you always tell the teachers that Momma makes a better lunch), getting you ready for bed, and even taking you to the grocery store or the park. You have the best imagination I have ever seen.  You can pretend you are anything from a pirate to a princess in a beauty competition and you always want someone to pretend with you.   Luckily for you, I also have a strong imagination so we are best buds at whatever we are pretending to do.   Somehow though it always turns into me being the kid and you being the mom.  I think you really enjoy bossing me around.  

I am so proud to be your father.  You have been a light in my life.  I cannot imagine life without my sweet little girl.  When I first became your father I could never image loving someone (besides mommy) like I love you.   You are so very special to me that I cannot even put my love into words.   You make me laugh every day and you are the sweetest little girl.


I am also very proud on how you are handling your new brother.  You love him very much and always want to help.  You seem to understand that mommy and daddy have to split time with you as the baby has a lot of needs.   While he was sick you and I decided to have our own little super bowl party in Little Rock with just the two of us.   I explained to you the concept of the super bowl and you loved the idea of a "party".   You told everyone at the hospital that "you and your daddy" were having a super bowl party and that you were going for the "raisins".   You were a little confused when I told you that the 49ers were playing the Ravens but it was very cute.   You cheered the entire game, and kept asking "which team is the raisins? I love them".  It's moments like these that melt your papas heart.  Finding your mother will always be the best things that has ever happened to me, but having you and your brother are the best things that ever happened to our family.  


Hannah, you are and will always be my best friend.  As your father I look forward to many years of princess shoes and tea parties.   I look forward to your first real day of school and the day you go to college.  I look forward to walking you donw the aisle and to you having children of your own.  Most of all  I just look forward to every day with my best friend. 
I love you,
Your daddy

Wednesday, March 20, 2013

To My Son

To My Son Evan,

As your father I spent 9 months waiting patiently for your arrival.  My dream of adding a son to our family was finally going to come true.   Don't get me wrong, I love your little princess sister more than anything in the world, but I can only play tea party, doll house, and baby so many times before I want to pull whatever hair I have left out (By the way you were blessed with the Clubine gene so do not plan on having a full head of hair.  Bald is beautiful!!).   She is 100% girl and I love her for that.  I will never forget your birth or the events that lead up to you being sick.   On Jan. 14th when you were born, you were the perfect son.  All I could think of was teaching you to shoot baskets, teaching you to throw a football, and teaching you all the things a boy needs to learn.  All those thoughts flooded my head as I held the perfect son.



  

Everything changed on Jan 17th when we found out that you were seriously sick.  I will never forget that helicopter ride I took with you to Little Rock.  That was the longest 50 minutes of my entire life.  I just sat there helpless as I watched you struggle to breathe inside that plastic transport box. Here is my perfect son and only a few days into his life he could be taken away from me.  All I could do was pray. At that point I knew we would need a miracle if I was going to have the opportunity to teach you all these things that I have been dreaming about.  I was really struggling with "the why" my perfect son, who was born healthy was sick.  I needed guidance and I needed strength and you helped provide that to me.




Once we got to the hospital you really showed everyone the fight and courage that you had in you.  You are a Clubine and you were not going to let this sickness keep you down for long.  You are a fighter and after that fateful night when they intubated you and you survived, I knew you would get better.  Once you made it through that terrible night, you continued to get better.  Your mother loves you so much, but she could not hear any bad/good news about you without me first prepping her for the news.  For that reason, I spent every morning with you and we gave mom and aunt Allison our own video report to show how great you were doing.   This report was our way to show mom that you were getting better regardless of whatever the Dr may say that day.  It seemed like every day was a new challenge, but you took it head on and for that I am the proudest papa on earth.


video





video


This entire process has brought our family closer to God and closer to each other.  You may never fully understand what happened to you, but I will tell you that we will never forget.  You are a miracle and I am soooo proud to call you my son.  You have changed a lot of peoples lives with your story. 




Now you are two months old and you are doing so much better.   My dreams are back to throwing a football and going to our first game together.   We have so many firsts that we will do together.  I cannot wait.  I do though want to give you a heads up, while I am a pretty manly man, there are a few things that you may have to learn from your mother.   She is actually the handyman of the house as well as the exterminator.  I hate to admit it, but your dad is terrified of spiders. She is also the better swimmer, runner, and by far the best cook.  Believe me you will want to learn how to cook something besides frozen pizza by the time you leave for college.



I will though teach you how to catch a ball, shoot a basket, grill on the grill, how to ride a bike, and a lot of other things.   Some of my favorite memories as a kid involve playing basketball with my dad in the driveway or learning to hit a golfball.  These are things every kid should get to experience with their father and I will be there to teach you.   I see so much of myself in you.   I cannot wait for this journey that we are going to take together as father and son and as a family.  I am proud of you my little fighter and love you very much. 

Love,

Your Dad Scott

Monday, March 18, 2013

Guess Who Is Two Months Old????

Sweet baby Evan is already two months old.  We have settled into a routine at home and I am finally able to relax a little more and just enjoy my baby boy.  I still have my moments where I get very anxious (it really stresses me out when he cries), but overall I am feeling really good.  He just acts and looks like a normal baby.  He has gained so much weight and is a little chunk now.  You would never know by looking at him that he spent almost a month in the ICU.  He is still on two blood pressure medications, Prevacid for reflux and baby aspirin for the blood clot.  We have a big follow up appointment on Thursday with Nephrology to check his kidneys.  They will do another renal ultrasound and we hope that his kidney function is back to normal and that the blood clot has completely resolved.  We go to see the cardiologist again in April.  We still have weekly pediatrician appointments to check his blood pressure and it has been looking good (except for one week, but I think we just didn't get an accurate reading).  We were supposed to get his weight checked every week too, but clearly that is not a concern anymore.  He has been gaining weight like a champ.  He was 12lbs 5oz last week and we go in on Thursday for his official two months check up.  He will get his first round of shots then.  That should be a piece of cake after everything he has been through:).

He is a sweet little boy that likes to be held all the time.  He sleeps good in his bassinet at night, but I can't put him down during the day.  As soon as I put him down he will wake up.  He also likes to sleep in the Ergo carrier.

He started to smile a couple of weeks ago, which is just the sweetest thing.  It just melts my heart when I know he is reacting to  my voice.  His big sister gets really excited when she can make him smile or laugh.  He is making a lot more "talking" sounds too.

His reflux does not seem to bother him.  He spits up and goes on about his business.  It just means a lot of laundry for me.  We go through at least 3-5 outfits every day, 5-7 burp rags, 1-2 blankets, 1-2 sleepers and sleep sacks plus all of my clothes.

We are just so thankful to be home with our little miracle boy and be able to "celebrate" his two months birthday!

Sunday, March 17, 2013

Newborn Pictures

I haven't had a chance to post Evan's newborn pictures.  He was 1 month old when these were taken by Myra Wike.  He did not stay asleep for them and was not too happy about being changed, put in different positions, wear hats ect.  That is much easier when they are only a week old:).  I do love how these turned out though.  I remember sitting in the hospital when Evan was about a week old thinking that this is not how it's supposed to be.....I am supposed to be home with him and taking him to get cute newborn pictures taken.  I am just so happy that we get to take fun pictures now and I will cherish these memories forever. Here are my favorites.

He is pretty handsome!
I wonder what he was thinking here?????
This fedora and tie us just too cute!
I love this one.  He looks like he is in deep thoughts.
I think this one my be my favorite!

Thursday, March 14, 2013

Dear Hannah

You have been an awesome big sister!  I know your life has been turned upside down too, but you are handling it so well.  I am very proud of you and you are a very proud big sister.  You like to show off your little brother to everybody and you refer to yourself as "big sister" now and not Hannah.  You like to help me take care of baby Evan.  Sometimes you are a little too much help, because you like to do everything by yourself.  I can't leave you two alone yet even if I just have to go to the bathroom.  You know that you are not allowed to pick him up on your own, but I can't quite trust you yet.  I learned this, because I caught you trying to pick up your brother and as soon as you saw me and knew you were caught you dropped him.  Thankfully you were on your bed and you had just tried to put him on your lap.  You have not shown any signs of jealousy yet and I really hope that will stay this way.  You did get mad at him the other day, because he didn't play with you.  Soon enough he will be able to play with you and I am sure by then you wish that he was just laying around and not play with your toys:).
You will always be my little baby even though you have grown up overnight since Evan has been born.  You just seem so big now.  I miss my one on one time with you and I quite often feel guilty for not having a lot of quality time with you, but you have been a champ about it.  Thankfully you and your daddy have become best buddies and hang out a lot.  I asked if you wanted to go to the mall with just mommy to pick out some shoes for aunt Allison's wedding, but you said "how about daddy and Evan come too".  So, I think it is harder on me not o have the one on one time than on you.  You are such a sweet and funny little girl and I can't fathom that you will be four years old in a few months.  You still love to play doctor thanks to Doc McStuffins and you like to give Evan a check up.  The other day you said "I have a diagnosis.  You have spitosis".....it is very true that your brother spits up a lot!

Seeing the two of you together just melts my heart.  
You have been fascinated with your bible stories.  You want to read them all the time.  You told me the other day that you would like to be a doctor first, but then you would like to be an angel when you grow up.  You said "Mom can you please ask God to send me an angel costume?  He can put it in a backpack and then drop it down from the sky.  Can he get one for Evan too?".  Then you asked to go outside to talk to God and ask him for an angel costume.  We did go outside and you stood on the front steps with your eyes closed and talked to God and asked him to drop down an angel costume for you and a boy one for your brother. We walked back inside and you asked why he hasn't dropped it down yet.  Then you said "God is in your heart".  

Daddy was out of town last week and you got to spend the night with me.  You brought about 15 animals in bed with you.

We also had some fun with shaving cream

I love you to the moon and back and I am very proud of you!

Wednesday, March 13, 2013

Evan's journey......last part

I left off on the day Evan was extubated, which was January 24th.  What a great day.  He was still on oxygen, but they started to wean that over the next few days. From that day on we got to hold him more often.  It was still quite a challenge to get him out of his bed.  He still had lines in both of his legs, in his neck, IV access, feeding tube, oxygen and all the leads for the monitors.  On Saturday the 26th they were able to remove the lines in his legs, because one of them went bad and one of them was not needed anymore.  We had lot of ups and downs for several days.  His blood pressure got too high again after they weaned him off the medicine and they had to start the medication again.  His cratnine levels were too high and they had to increase kidney medication.  He didn't pee for a long time and we were really worried about his kidney function.  He didn't tolerate his feedings well, so they had to stop them again and put him back on fluids.  I was constantly worried about his vitals and just stared at the monitors.  I believe it was also on Saturday when they decided to try a bottle for the first time, because he had tolerated his feedings well and his oxygen was low enough.  It was such a great moment to hold him and feed him his first bottle of the "Evan cocktail".

 We were still waiting on test results from the metabolic testing, so he couldn't have any long chain fatty acids (they skimmed my breast milk and mixed it with MCT oils (?) and Enfaport formula).  They also had to be careful with proteins due to his kidney function.  The first few days of bottle feedings were tough.  He still knew how to suck, but he kept falling asleep after a few minutes and didn't finish his feedings, so they still had to give him the rest through the feeding tube.  He slowly got better at.  He only got 20min for each bottle, because after 20min he would be burning more calories than he is getting.  Evan was also finally able to move up a room, he was no longer in the last room (I previously explained how they move kids up the hallway as they are less sick).
Here he is in his new room

 He continued to improve really fast and I can still hear the doctors and nurses say that they have never seen anything like it.  They have never seen a kid turn around so fast after being so critically ill.  I am very proud of our little fighter!  On Monday the 28th they performed another renal ultrasound and the blood clot was almost GONE and the kidney function was improving.  They were able to wean him off the Heparin and start blood thinning shots.  On Tuesday January 29th we were moved again to another room and on Wednesday we were officially put on the step down process, meaning they were prepping him to go home.  I remember feeling very anxious, because they were moving so fast.  I was excited, but also very worried.  We still didn't know what caused his heart failure.  The high blood pressure and kidney failure were most likely caused by the blood clot.  On Tuesday night we decided to have a family dinner during shift change and we both left the hospital.  We had no idea that Little Rock was under a tornado warning.  We had dinner with my mom and Hannah together for the first time.  Scott and I headed back to the hospital after dinner to say good night to Evan.  On the way back to the hospital my phone rang and it was Evan's room.  My heart started to beat really fast immediately, because it has never been good news when they called.  It was his nice nurse telling me that everything at the hospital was alright and that they were just waiting out the tornado warning in the hallway.  They have to move everybody away from the windows.  It is no small task to move all these kids that are attached to monitors and drips.
Once we were on the step down process one of us had to be there 24/7.  We were taking care of him like we were at home.  Evan no longer had a nurse to himself, he had to share one.  The were also able to remove his feeding tube and we finally got to see his precious face.
We got to feed Evan all of his bottles, had to change his diapers and give him his medication.  The nurses still assessed him every 4 hours and he was still hooked up to all monitors and still had lines in his neck.  There was not much rest at night between assessments, giving medications, monitors beeping plus they can't turn off all lights since it was still the ICU.

At 3 weeks old (on February 4th) he was finally able to put on some clothes!
That same day we got the metabolic test results and they were negative.  I was able to start nursing him right away.  He had no issues with it, which made me very happy.  No more "Evan cocktail".  The next day he had to pass his car seat test, we had to learn how to give him his blood thinning shots and we had to take Infant CPR.  They also performed another heart ECHO and renal ultrasound.  We met with all of the doctors again and were told that we would be able to go home on Wednesday February 6th.  I was so happy and nervous.

Packing up all of our stuff
We left the hospital in the afternoon of February 6th.  We spent a couple of days in Little Rock to get more comfortable before heading back to Bentonville on Friday February 8th.