Piper and Dad

Piper and Dad

Saturday, July 21, 2012

Big news....Huge News.....

Well it's been a few days since I last updated the blog, Maizy has been doing great, and still working on eating.  She is now weighing in at a hefty 7lbs 6oz! 

And finally Aunt Kathy Poore got to meet Maizy!!  Kathy and her family came by to see us on their way to Orlando for vacation.  It was great to see our fantastic friends who have done so much for us while we have been gone.  I have been told that Kathy, Allison, Piper and Traci  also had a late night spa in our room at the Ronald McDonald House. 

Piper came back from her stay with Papa and RaRa on thursday, I met them in Junction City where not only RaRa came to drop off Piper, but so did Great Grandma Dodo!!  She also bought us ice cream at the A&W at the truck stop where we met them.  For those you who know Dodo it's of no surprise that she bought us ice cream...that my friends is what Dodo does!  Also it worth noting that yes indeed A&W Rootbeer restaurants still exist and thrive...in truckstops in Kansas.

It's also worth noting that we have been informed that after over a month....WE ARE GOING HOME!!!  That's right, Team Ferrell is going home.  We both learned to place the little feeding tube in her nose last night, and other than that...Amaizing Maizy is all good and ready to get the heck out of here.  Piper is eager to show here the garden, her toys, the peach trees, the grape vines and introduce her to Scout and Kya!!!  Needless to say we are all ready to be home!!

The last 5 weess has been a trying and tough time, so much has been jammed in that it seems like its been 3 years.  Piper and Traci both turned another year older, we celebrated Father's Day and the Fourth of July, Austin Doering was born (Traci's brother Scott, and his wife Jess's new little boy) and most of all Maizy was born, went to the NICU, Had open heart surgery, went to recover in the PICU, came off her ventilator, had her chest wired shut, was finally held by her love ones, and learned to eat as well!!   It's safe to say Maizy has had jammed into her life in the first month more than what most of us have to deal with our whole lives. 

I would say that this month has been quite eventful, but through it all we made the best of our situation, and we are eager to finish up this adventure that life has given us.

As I have stated numerous times before we couldn't have done it without all the love and support of some many fantastic people, we even had people we don't know praying for us...it was truly moving to know how many people were thinking of Maizy in this difficult time.  In a time where the world consistently seems like a terrible place filled with terrible people, our family was shown that in fact that is not the case.  This world has amazing and caring people in it, who in tough times will take time out of there busy day to pray for you, say a kind word, or simply hope that things are going well.  We will never be able to pay back the kindness that so many people have shown our family, but I promise you we will pass on that caring to others. 

I plan to continue the blog to let everyone know what is going on as we take our adventure home, so I guess I will continue to be a daddy blogger!!

In closing, there are just too many people to name that have shown our family love and kindness so I will end this blog post by simply saying that every single thing that every single one of you did helped us along the way, help in the healing process and gave us strength to get through one of the toughest times in our lives...we love you all.  From the kind words and prayers, to the all our visitors, from those who offered their time and homes to us, and everyone back home who cared for our animals and our home...we love you all so very much.

Thank you to every single one of you.  We will be seeing you all very soon!

Saturday, July 14, 2012

Every day is another step cloer!

Hello all!!

It's been a few days since I last posted an update, and we have been focusing on getting Maizy to eat on her own, as this is the last hurdle to overcome before we can get home!  We were warned in the beggining that alot of times this is what holds up families from going home.  Namely because Maizy wasn't able to eat at all until after her surgery and recovery.  We are roughly day 5 of feedings and we started off on the first day with Maizy eating roughly 1-5 ml out of 60 ml from her bottle, but we are happy to say that today she totally rocked it, at one point she drank 50 ml out of 60 on her own.  This of course wore her out and she averaged about 25 ml on her own each other feeding.  So we are making great progress!!

Maizy has had more visitors as well, and people are now able to hold her!   My mom was able to come up on Friday,(after somehow taking roughly 30 minutes to park...apparently she parked in Lawrence) and we have had numerous others come by and say hello as well!  Grandma Rhonda was camped out by her bedside today, no doubt reading her World War II novels or showing her how to cross-stitch.  Piper will be going back with Grandma RaRa for a bit this week so she can be back home for a little while.

Piper and Daddy have been spending alot of time together lately so mommy and Maizy can work on eating, (eventhough it is worth noting that I am in fact the one who fed her the 50 ml...I am the bottle feeding champ!!)  So we have certainly had some adventures to say the least.  Recently we went the Trek bike shop here in KC, so Piper could pick out a new bicycle for her birthday.  She picked out a bright yellow Strider bike (its essentially a balance bike, it has no pedals, she just uses her feet) with pink streamers!  She was  a hit at the bike shop, as she took off running and returned with an $80 helmet explaining that she needed a helmet too!  I explained to her that in fact she already had a helmet, she paused for a second handed me the helmet and took off again.  I followed her over to the high dollar road bikes where she promptly pointed at a bike and said "I want that one daddy," it was a $4,000 carbon fiber road bike....yeah I want one too Piper!!

We checked out the Legends yesterday afternoon/evening so she could run around and see the animals and fish at Cabelas.  We probably walked in circles from the animals to the aquariums no less than 10 times, she just rode in the basket and pointed out to me all the animals and what sounds they made.  She also later that evening, with some prompting from dad, told mommy that she wanted a benelli shotgun...it actually came out "nelli please mommy......."  that a girl!!!

We then went and ran around the outside shopping area and then had dinner just her and dad.  She stopped in the middle of dinner put down her fork and started to point at her cheek, I couldn't figure out what she wanted...then I realized she wanted me to give her a kiss on the cheek, you bet kiddo, I can do that. 

Numerous trips to Trader Joes, Target ,other area bike shops, and coffee shops and Piper still wants to hang out with me, so I would say things are going good with Piper and daddy time.  It's worth noting that we have officially been in KC long enought that we have had to purchase essentials that we stocked up on before we left, q-tips, contact solution, toothpaste, and have gone through 2 and half bars of soap, shampoo and shaving cream...who keeps track of that kind of stuff you ask?  Traci does....that who.  As a side note we also have gone through 3 shower poofs....apparently they are 2 for $1 at Target for a reason and when those pieces of junk unravel....they are no less and 50 feet of shower poof material...

For those of you who don't know Piper's birthday is July 15th, which as I type this is roughly an hour and a half away.  Spending it in KC under these circumstances is certainly not what mommy and daddy would have chosen for her second birthday.  We are lucky that we have such an amazing little girl/big sister who just goes with the flow and does what ever we need to do.  She is an fantastic, and sweet little girl, I can see already that she is genuinely just a good soul, she says hello to everyone, waves at people and almost always has a smile on her face....unless we are getting close to naptime!!  She has made friends with people no matter where we go, from the coffee shop to the bike store, to the hospital cafeteria to the NICU....everyone knows and loves Piper.  Someday in the future when she is all grown up we will look back on this and I will thank her for being there for all of us, she made us laugh with all her goofiness and smileas, and made us cry with how loving and gentle she is with Maizy.

Tonight we had her birthday dinner with Grandma RaRa at Lulu's noodle shop.  Lulu's has been one of our main restaurants we go to when the cafeteria food is not bearable one more time, but we don't want to venture out too far. Piper has taken quite a liking to Thai food!  So we had thai food, (yes grandma RaRa had Thai food as well!!) and then we had birthday cupcakes that were special made for her by a very nice lady in the bakery at Hy-vee.  She loved the cupcakes, but even more than the cupcakes, she loved blowing out her candles....roughly 50 times.  Mommy barely had enough time to eat her cupcake b/c she kept having to relight the candle so Piper could blow it out again.  She also wished each one of us individually a happy birthday as she blew out her candles.  While it wasn't the big birthday bash we would have wanted, (we plan to have that in August) it was a good time and we were with each other, and that's all that matters.  One of these days we will take Maizy to Lulu's so she can share in the experiecnce as well.

So in closing thanks again to all of you for all your love, we couldn't have done it without every little bit from every single one of you.  Keep praying and stay happy!

We love you all!

PICTURES!!!!!!

Checking out the animals at Cabelas!
just sitting in her spot at the coffee shop...contemplating world peace...or how to acquire more cantaloupe.
Because sometime you have to take your cereal out of the bowl so you can drink the milk first!
Then you put the cereal back in!
Baby Kanye West in the house!
Saying good morning to baby Maizy
My new bike!!  Tour de France here comes Team Ferrell.  Accepting sponsors now!
Don't eat my cupcake RaRa!
Blowing out her birthday candle!
Pretty rings!!!
What?.....this makes total sense.
This place is huge and amazing!
Birthday dinner picture
CUPCAKES BABY!!!!
Urban dwelling baby
This is delicious milk!!
Piper and Mommy at Lulu's
Hmm....deep in thought/
Birthday cupcakes bling!!
blowing out candles take #43
blowing out candles #23
They aren't Aunt Jess's cupcakes but they will do in a pinch!

Monday, July 9, 2012

Still here....still rockin!

Hello everyone, I am writing this as mommy is up at the hospital, and Dad is hanging out with Piper while she naps.  It's also worth noting that Piper is eagerly awaiting waking up so we can take a trip to the bike shop.  Piper wants a bike...she said Please....so pretty much I will do whatever she asks...I am weak...I know.

Maizy is doing great, she got her staples out today so more progress is being made.  She is also starting to slowly pick up this breastfeeding thing which is awesome for many reasons, mainly that formula is processed nastiness...and her formula poops are terrifying.  So the less of those I get to deal with the better!!

During rounds today the Neonatologist told us that basically we are just waiting for Maizy to latch on and feed and to gain some weight!  Do I dare venture to say that maybe....just maybe the end is in sight!

Piper got to go swimming and hang out with Quincy and Harper Long this last week, she sure had a great time and from what I have been told Piper was introduced to the wonderous world of Barbie while hanging out with Quincy and Harper.  A big thank you to Raegan Long for letting Piper come swim and hang out for the day...it's much appreciated.

Also a big thank you to Vince, Kelly, Miles and Macy Grisell who met us at the coffee shop yesterday to visit and also loaded us up with a care package from Trader Joes!  You guys rule.  Vince and I have been friends since way back in highschool when we dominated on the gridiron...okay mostly we dominated the sidelines, but we got in on special teams.  Vince is one of those life long friends that all of us would be lucky to have, so a big thanks to the Grisell's as well!

Piper is doing great, and keeping dad on his toes.  Since Mom is trying to nurse Maizy more so we can work on getting home, Piper and I have had some good bonding time.  For example the other day while playing with play-doh in our room at the Ronald McDonald House, I told her I loved her, she looked up at me and said "I love mommy" so I responded by saying "but daddy loves Piper" Piper responded with "I love Maizy, I love donut shop, I love coffee shop....." fair enough.  I am relativly certain that I am right after coffee shop.

Dad also learned that Pipers cute little Under Armour skirt is a tad too big for her when we walked into the hospital yesterday and just was we walked up to security, her skirt fell down around her ankles.  However I am proud to say I did remember to put underwear on her so some of the embarassment was avoided. 

Piper and I take regular early morning walks to the coffee shop about a half mile from the hospital, Piper loves their chocolate milk and coffee (coffee cup full of water).  They know her there so she is a pretty big deal.  So a big shout out to the Filling Station Coffee Shop for being awesome to us every time we are there! 

All in all, things are going well.  Thank you for the continued kind words and thoughts, they are all very much appreciated! 

Life is Good!
Snuggling with dad!!
Hey everybody...I will see you soon!!
Check out my flower bracelet Kelly Grisell made me!
Early morning Chocolate Milk at the coffe shop
I need cantaloupe!!!
Finally get to give baby Maizy a kiss from big sister!!!
sleep tight!
Going swiminng!!!
"I will hold my baby Maizy!!"
Flower Bracelet
Can I have a bite of your sandwich?
Our morning view from the coffee shop...its not Concordia but it will do for now.

Friday, July 6, 2012

Just keep on keepin' on!!

Hello everyone!

Well Maizy is doing great, she is off all oxygen assistance and doing really well.  And after Dad asked the doctor this morning, they have let Maizy start to breastfeed.  (I fancy myself a breastfeeding advocate now)

This is a big step because the big hang up lots of the time to getting to go home is the difficulty in feeding once its time to start, especially in our case because Maizy was not allowed to eat anything after she was born, they started a feeding tube down her throat just a couple days ago!  So needless to say we are very happy, and looking forward to watching Maizy continue to progress.  It is also worth noting that Maizy's chest tube that drained any blood or fluid was taken out early this morning...so we can finally hold her now.

They moved us from the PICU floor back down to the NICU to get Maizy stronger, she also off enough of the IV's and sensors that she is now in a crib.  She is off all her heavy duty painkillers (just tylenol...sorry Maizy no more hillbilly heroin for you, thats Oxycotin for the uninformed).  She is also off her antibiotics and is awake much more as well!!  And yes the family that destroyed the NICU waiting room when we were previously there...yep still there...still destroying everything.  One kid informed me today he wanted donuts...oh yeah kid...well I want you to stop destroying stuff, and leave this place immediately, and it doesn't look like that is going to happen...so I guess we will both have to learn to deal with dissappointment.  *its worth noting that I didn't even have any donuts....so my first inclination was to respond to him with "kid what the hell do you want me to do about it, I just want to drink my coffee and pretend that you and your 103 brothers and sisters are not here swinging from the rafters."  However I did not say such a thing...all I said was "oh yeah...cool."

But I digress....all in all it's going very good!  So good that when I came back from work today, Piper, Mommy and Maizy were all sitting in a chair together.  It sure did warm my heart seeing all my girls together, we just need to get them all home now!!

Also Piper is doing very good as well, so good that she decided that her sister is well enough that she can start blaming her for stuff...for example she apparently decided to fart today in the NICU, and she blamed it on Maizy....well played Piper. 

Piper also demonstrated to me a truly amazing skill she possesses the other day.  See Piper is potty trained already, we started her early to see if she could do it and boom!  she picked it up very quickly.  She was pretty much potty trained at a year and a half...and yes I am bragging and no I didn't have much to do with it....don't judge me. 

Anyway back to Piper's skill...see Piper will on a rare occasion still have an accident, and she had one the other day in the waiting room, right in front of the vending machine, right as she told me she had to potty...but the amazing thing is hardly any pee actually hit the floor...and she took a huge whiz too...so how is this possible you ask?...see Piper possess a certain skill, one that would make her a super hero of sorts...Piper can some how completely piss in her shoes...not just one shoe....both shoes.  I have not idea how she does it.  All I know is that it takes skill, talent, patience and a boatload of paper towels.  Good thing mom packed an extra pair of shoes!

Once again I thank you all for your prayers and kind words, and I would like to share with all of you something that popped into my mind the other day out of the blue.  "If you don't believe in the power of prayer...come meet Maizy."

Thank you all!

Wednesday, July 4, 2012

Self Portrat by Piper
(or as I like to call it, baby hipster album cover)
Yep the PICU has wrtting instructions on using sliding doors....notice the instructions start with #5....
Look Papa I can eat that whole ice cream cone!!
Mommy I missed you so much!
Piper in our favorite KC coffee shop....because sometimes you need a cup of coffee and a granola bar.  (its water...I promise..but she insists on getting it in a coffee cup)
Thank you for all the prayers for my sister and my family. - Love Piper.

In this corner weighing in at around 6 pds 10 oz...the champ....Maizy!

Well to say that alot has been going on the past 2 days is an understatement.  I left for work around 6:30 am on Tuesday and shortly after arriving to work I recieved a flood of news from Traci regarding Maizy and her progress. 

Apparently Traci walked in just as they were doing rounds, and the doctor said "well Maizy had quite the eventful night" immediately Traci is worried and is wondering why no one called, then the doctor showed her Maizy.  She was off the ventilator, her tubes were out of her mouth, and she had already been weaned from the CPAP machine which is the next step when you come off the ventilator!  So Maizy must have decided to suprise us!  Monday night we went to sleep with a ventilator in her, Tuesday we wake up to no ventilator and they are taking out some of her IV lines, and different sensors as well!!  She is looking more like Maizy and less like Robocop every day!!!

I sure did feel like I missed out on a lot being in the office!!  She is also eating food now, as she was not allowed to have anything prior yesterday because of fear of infection...Maizy is a champ!  She is getting milk through a line that goes to her stomach, they tried to go in through her nose but it was too small, so its in her mouth.  But hey its milk!!

Today they began to turn down more and more the oxygen she is getting through her little nasal apperatice (yeah I spelled that wrong big time).  Its the last step till she is completely off any assistance, and really all this is is extra oxygen for her when she breathes in, she is breathing on her own.  She off the continous stream of pain meds and sedatives and only getting pain meds as needed, and is on no heart medicine either!
*note that this update will tell you that not only has Traci informed me of the correct spelling of apparatus, but that it just happens to be the word that she won her 7th grade spelling bee by spelling correctly...well played Traci...well played*
Big sister Piper came back yesterday as well, when she saw mom and dad she took off running straight into mommys arms and just laid her head down on Traci and didn't let go.  I held her for a little bit, then she decided she wanted mom again!  It was great having Piper back!

We have had many visitors over the past 2 weeks and I thank all of you so very much, from Ben and Tawni Retter, Seth Retter and Sarah Hutchinso visiting after running the Color Run, to the Keuker family coming to visit before the Color Run, or Vince and Kelly Grisell bringing us lunch and coffee, or Will and Lindsay Metcalf and their two boys Quinn and Bennett, (Ben, I can call him that because we are best friends, really likes me...I am just saying he's awesome) to Angel and Elizabeth Haro and Rafaela Panuco, to my Aunt Tanzey and Uncle Allen, the Stein family who have not only visited but also taken care of Piper, to the Poore family who have watched over our home, and cared for Piper as well so she could be back in Concordia for awhile, and notably Traci's parents Dave and Rhonda, who have been more help than they will ever realize, my brother Derek and his girlfriend Stephanie, and my mom as well. And Traci's entire family back in Delphos who have done so much to help.  (Aunt Dee if you are reading this from now on I will stop making fun of you!!)  The list goes on and on, I am sure I am missing people but I truly thank all of you, if I have missed someone I apologize. 

I was talking to a friend/work colleague the other day and he told me that he didn't know who all had visited us, but that Maizy sure did have alot of thoughts and prayers coming from all other, I told him that it was very overwhelming and humbling to know how many people care and pray for our family everyday, it even makes this crass smart-aleck tear up sometimes even talking about it.  I told my colleague that there would be no way to repay the kindness and love that such a large group of people have shown us, and he said that "No one expects you to pay them back, the only way you can pay them back is by paying it forward, you have to make sure you know do something to help someone else."  If those aren't words to live by...I don't know what is.

We are not home yet, but we are on the road to recovery, Maizy is a champ!  Please keep praying, and I hope you all have a fun fourth of July!!

We love you all!!

Monday, July 2, 2012

CLOSING UP SHOP!!! (or chest)

What a day!!!

This morning we arrived at the end of the procedure to close back up Maizy's little chest.  They had left it open to accomodate any swelling, and all was looking good!  We actually were told by the nurse at the nursing station that they would come get us when the procedure was completely done, and that it was just about finished up.  So Traci and I went and sat in the waiting room...after about any hour I was fairly certain they had neglected to tell us they were done, especially since we saw the surgeon when we arrived this morning, and he said it went great and that they were getting the area cleaned up.

So we went ahead and went back in...lo and behold they were done!  I was a bit irritated but that was quickly subdued by seeing little Maizy looking much better, and slimmer might I add.  The open chest made her look really broad, we actually commented that she appeared to be built like an Olympic swimmer...very broad chested....in case you were wondering we have in fact been watching the Olympic trials.

So the next order of business was to start weaning her off the ventilator, they switched it to a different mode that allowed her to start working on taking her own breaths, but still being aided by the machine.  She is doing great!  She actually started to wake up fairly soon after the procedure when the took her off sedation...(on a side note they gave her a paralytic during the procedure today...I thought paralytics only were real in the movies...in fact they are very real.  That would make for a terrible practical joke if you had some of that stuff..."suprise you are paralyzed!!")

She would peek at us every once in while and she really started moving too!  It was great for mom and dad to see her little eyes again!!

At one point this evening she was really moving around, straining and looking generally uncomfortable, the night nurse was certain she was in pain/uncomfortable.  So she got her something to take the edge off, however it was a suppository, and when she took off the diaper Maizy showed her exactly what she was straining/acting uncomfortable about...she rocked out a giant turd (I believe "Rocking out a giant turd" is in fact the scientific term.")  So the nurse cleaned her up and prepared to do all of the suppository business again...so what did Maizy do?  That's right she rocked out another turd.  She is definitely my kid.

Piper is doing well, she went to great grandma Dodo's today and got to play, and she will be back tomorrow night!  While she won't be able to see her baby sister quite yet, we are making great progress and she will see her soon!

Hoping this finds you all healthy and happy!






Sunday, July 1, 2012

I think she moved her arm...she did move her arm!!!...oh crap is it okay she moved her arm?

Happy Sunday to you all!

Another uneventful night is in the books.  Yesterday was a good day as a lot of Maizy's swelling went down and she continued to pee like a champ! (she does get that from her dad!)  Late last night I noticed that she started to occasionally move, I could see her eyes moving under her eyelids, she would move her feet, and once when I touched her side her arm twitched as if to say "Hey dad...I am still sedated from open heart surgery...don't touch me right now!

Of course it was exciting to see movement, but once I realized that.... well she was moving I became a bit nervous.  The doctors and nurses said not to worry they wouldn't let her wake up, and that it was just a common reaction.  So cool...we are all good there. 

Piper is doing well, she conned Dr. Poore with the help of Allison Poore into taking them all to Dairy Queen that other day.  Apparently Piper saying "Ice cream...Dr. Poore....pllllleeeeeasssseeee"....gets you a mini blizzard.  Piper is going with Papa Dave today so she can do her sunday routine of going to Great Grandma Dodo's to play, and then to Papa and RaRa's house for lunch.  Papa Dave is also picking up Scout (one of our dogs) because she is terrified of fireworks, and with the fourth of July coming up its best if Scout goes into hiding.  So Scout with likely spend the fourth of July riding around with Papa Dave making sure no "damn idiots" set off fireworks at the Pike Trail Marker.

I want to give a big shout out to our friends Ben and Tawni Retter who are running the Color Run in KC today and they made the shirts pictured below:


Maizy and the rest of Team Ferrell are there with you in spirit!!!

I would also like to thank Rhonda (Traci's mom or as we call her Grandma RaRa) for coming over and tidying up our room at the Ronald McDonald House and doing laundry.  I appreciate the fact that she washed my padded bike shorts, which happen to have bright orange padding in them.  She was dumbfounded by what that they were, and asked me later "What the hell are those tight shorts with the orange padding...do you wear diapers or something?"  There are some things you can't unsee...I think my padded bike shorts just may have been that for RaRa. 



Everyone be good to one another and we will talk to you soon!