Thursday, June 28, 2012

Pray for our little Monkey Man!

Okay, where to start.
Oh yes...The dreaded test......
Tuesday did not go as Zach and I would have liked. As I had mentioned in earlier post Blake had 3 major 
test done on regarding his brain, one his eyes, and another regarding his belly.

Blake has an ostomy that was placed during his emergent open laparotomy on April 30th. Blake's ostomy is where they have taken his small intestine and brought it to the surface of his skin creating a stoma. This allowed blake's bowel to rest and become stronger. We have officially gotten the "GO" on his takedown surgery. This surgery they will get rid of his ostomy and reconnect his small intestine with his lower GI tract! This is scheduled for Tuesday July 2nd. Blake will be back on the ventilator for this surgery, which in itself is scary, so prayers are needed.

On Tuesday Blake had his ROP exam- he has had this exam every 2 weeks for over a month. This exam checks preemies eyes to make sure the they don't develop ROP (Retinopathy of Prematurity) a potentially blinding disease in the eye that causes the retina to detach. Blake's first two eye exams have been good. But......we all know how Blake likes to be in the small percentile of things to happen. We found out Tuesday after his eye exam that Blake has stage 2 ROP in both eyes and a small area of stage 3 ROP in his right eye. THIS DOES NOT mean he is blind. However, it does mean that Blake will need laser surgery next week to stop the disease process. 98% of all babies that get laser surgery before it hits stage 4 go on to stop the disease and may only have glasses. The other 2 percent get sent to Chicago to a specialist. We are hoping we are not that 2%. So yes....that is 2 surgeries next week! This one was a complete shock for us, but good thing is this is a very simple procedure- does this make it easier on Zach and I---NOPE! But we will pull through. 

Last but not least.....

Zach and I have not posted anything on Blake's brain before. Not to keep you in the dark, but mainly because to us it doesn't matter, and we did not want to have to explain something that we know very little about right now. To protect ourselves from people with preconceived notions of what will be, we have kept this to ourselves and close friends and family. When Blake was one week old Zach and I were told Blake had developed a stage four brain hemorrhage. This was a huge blow, and completely devastating. When hearing the news you immediately think the worse- and to make matters worse the same day we found out about his bleed the doctor had told us he didn't think Blake would make it through the night. Lo-and Behold- 2 and 1/2 months later and here Blake is acting like nothing has happened!! 
Since we arrived at Riley's we have had several head ultrasounds to monitor the resolution of the clot in his brain and to monitor for any excess spinal fluid on the brain (Hydrocephalus). With a brain bleed, we know for sure Blake will need therapy starting as soon as we get home. However, unfortunately, the brain being the mystery that it is, we have no idea the long term effects it will have.  And wont know until Blake is probably around 2-6 years of age.

This is what we do know....
Blake has overcome so much already.  
4 procedures.
3 surgeries. 
3 different ventilators-Conventional, Oscillator, and the infamous JET.
And LOTS of bumps and surprises along the way! And we are doing GREAT!!

# 2
 The doctors have informed us they have seen children with minimal side effects, that hit all their milestones just at a slower pace- and they have seen children that because of the bleeds develop CP. But until Blake is older we wont know which path he will be on. EVERY CHILD IS DIFFERENT. There is no crystal ball that can tell us what Blake's future holds. What we do know his future holds is lots and lots of love!!

 And the last thing we know for sure-We have God on our side! And Blake is currently moving both arms, both legs, his head- he looks at his mommy and daddy and he knows they are there. He smiles, and has hit every milestone he has needed to so far. He has exceeded all expectations up to this to him is just a bump in the road and doesn't change anything.

So past that- what we are focusing on today is the hydrocephalus. If Blake developed Hydrocephalus he would need brain surgery for placement of a shunt or reservoir. Up until now Blake's ultrasounds have showed the clots on both sides dissolving and the fluid on his brain has been a normal amount. Last weekend Zach and I mentioned to the nurses and doctors that we had noticed Blake having more Brady's (Where his heart rate drops momentarily) than he was before. Everyone kept telling us it was normal...but Zach and I just felt this was not normal for Blake. So we PUSHED, we pushed until they decided to send labs and to get a head ultrasound to make sure it wasn't fluid applying pressure to his brain. So Tuesday we had the ultrasound- and again not the news we wanted. We met a neurosurgeon shortly (and by shortly I mean right after) we had found out about the surgery for Blake's eyes scheduled for next week. The doctor discussed with us the need of a reservoir, this is a "port" placed under the skin on his head that allows direct access to the excess fluid on Blake's brain. This will allow the doctors to withdrawl any excess fluid that is on board without having to do lumbar punctures all the time. Eventually Blake might need placed a shunt- a shunt will directly drain the excess fluid from his brain to his belly without having to withdrawl it directly. Right now Blake does not have that much fluid on board that they think this would be necessary. Yesterday Blake had a lumbar puncture to make sure he did not have an infection to his brain that would hold back surgery. Blake tolerated the LP wonderfully he sucked on his Binkie (pacifer) soaked in sugar water the whole time!! Results have come back and good news no infection!!
Not so fun news....plans for his brain surgery....wait for it...I bet you will never guess....are set for Monday. But again we will pull through. 

So in conclusion Blake will be having THREE surgeries next week--WHEW!
Mommy and Daddy were not prepared for that news, so now you can understand why we waited to tell everyone- we had to process first. But now we have processed and its time to pray! We need lots of prayers next week will be VERY hard. Monday Blake will have his brain surgery. 
Tuesday Blake will have his abdomen surgery. 
And we have yet to find out which of those two days they will do the eye surgery. 
So get your prayer chains going, you positive vibes flowing, and pray to whatever you believe in!
Because we will definitely need it!

Now a few pics to brighten your day.
 Yes I dressed my son up like a monkey!!
Blake trying real hard to hold his Binkie.
No more Monkey's jumping on the Bed.
"Mom- was the Monkey suit necessary?"
 Momma Getting Blake's weight---
4 lbs 7oz by the way! YAY for a chunky baby!!
 Proud Poppa- even though he thought the monkey suit was a little silly!

Wednesday, June 27, 2012

Photo Gallery.

June 27, 2012

Isaiah 43:2 
When you go through deep waters, I will be with you. When you go through rivers of difficulty, you will not drown. When you walk through the fire of oppression, you will not be burned up; the flames will not consume you

It has been a few rough days for my lil' family. Blake is doing fine. There is no need to worry!
But for today its a short post. Just some cute pics of my lil' man, and ask that you continue to pray! Pray for Zach and I to find the comfort and strength we need, and pray for Blake's continued health. We love you and thank you all and appreciate your patience. I promise to update you at a later time about Blake's test, today is just not that day. Sorry friends. 

We graduated to a BIG BOY CRIB!

We also celebrated with the Nurses
Blake's very first half Christmas! 
(Something to keep spirits up!!)
 Yes it is a Christmas Onesie the Nurses found, 
so Blake could match their Christmas Scrubs.
 Sleeping on his half Christmas special blanket the nurses found.
"Who is Santa again Mommy? And why do I care?" 

Blake sleeps in the funniest positions sometimes.
 Knocked out cold.
 Playing peep-eye.

Monday, June 25, 2012

Mountains and Speed Bumps.

June 25, 2012

Our journey has been full of ups and downs, tragedy and blessings, mourning and rejoicing, loss and life. All of these feelings all deriving from one huge feeling: LOVE. At times when the bad seems to out way the good I have learned to turn to God, not to question his path but rather to find comfort in it. Comfort in that all this grief and heartache comes from a love I, myself, had never known I could feel. A love for my children is a love that knows no bounds, a love I would die for, a love I have never known until my beautiful boys were born April 11th. I find that when times are rough God sends messages, scripture to me, whether it be through a card sent from a stranger, or a visit from a friend, or believe it or not google! (God does work in mysterious ways!) It was on a dark day, a day I don't like to remember, a day I felt as if I were in a hole and might never find my way out that I googled "verses to help you on a bad day"- it was that day I wrote the blog on May 16th called "timeline." It was the day the doctor told me Blake's ventilator settings could go no higher, that he would never get of the breathing machine, and asked Zach and I if we wanted to continue to do everything for Blake. It was that day we as parents had to ask ourselves if we were doing the right thing by fighting for him and doing everything we could to keep him here on earth with us. "Are we being selfish? Are we putting him through pain, for our own selfish reasons?" It was that day that I found the verse Jeremiah 29:11 
"For I know the plans I have for you" Declares the Lord, "Plans to prosper you, and not harm you, plans to give you hope and a future"

 It was this scripture that I found comfort and certainty that we, in fact, were following God's will and that we were doing the right thing...Only a little over a month later now and Blake is thriving! Blake is off the breathing machine that the doctors were convinced he would never get off of, and he is exceeding all expectations. Since then this verse has been spoken to me over and over,it doesn't surprise me that today I found myself back to it. In the NICU we always speak of ups and downs, and the roller coaster ride that it is. What I don't happen to mention is how hard it is emotionally as the parents. I tend to make a joke, or smile and make the best of a bad day, I rarely let on to people the emotional toll it takes on us, but today I will share another side of our story. The side that is not all good news. Blake has had a rough life, in his short 2 months he has struggled. At 3 weeks old I can remember sitting at the bedside crying with Zach, saying goodbye to our sweet little boy, our hearts aching. Pulling the webcam off of Blake's bed so that no one could see him like he was- lifeless and in pain. Blake's abdomen had caused an infection that was life threatening. We watched as he could barely move, feeling helpless as we sat with him, held his hands, and prayed constantly. We prayed hard, we didn't pray for him to live though. Instead we prayed for God's will to be done. If it was God's will to have Blake live we would rejoice in it, but if it had been the opposite and it was God's will to have Blake with him with Conor we would have mourned, but accepted that that was God's will. We put our faith in the Lord, we baptized Blake, and asked the Lord to help us. To bring us strength to accept which ever way he chose- we placed our trust in the lords hands and prayed that his will be done. His will was done, it was that very next morning God breathed life into Blake- and Blake's labs all started to improve and he became well enough to transfer here to Indy! It is these bad times that I know miracles happen. 

Today I find myself looking back on the journey we have had. This weekend, more so Sunday, Blake had some bad moments with multiple bradycardias, without a known reason, and low temperatures. This is what we would consider a rough weekend. However to compare it has made me realize how far we've come. That now the bumps in the road that we have aren't nearly the mountains we at first had to cross but more like the speed bumps you cross over in a parking lot. Does the severity of the bumps make mommy and daddy less worried- no, but it does make us rely on prayer more. Today I read Jeremiah 29:11 over and over...."Plans to prosper you and not to harm you. Plans to give you hope and a future." Blake has a future, but its still a long road ahead. A road full of therapy, and possible disappointments. BUT its also a road full of happiness, love, achievements, milestones, and everyday with Blake will be a true and utter MIRACLE in every sense of the word! We ask today for you to pray- pray for our patience, our strength to muscle through these last hurdles. We ask that you pray for Blake to continue to exceed all expectations, to thrive, and to conquer all these last hurdles! Prayer is a powerful thing, and even if you didn't believe before its hard to deny faith after seeing this lil' man beat every obstacle set before him. Tomorrow will be a day of test for Blake, we ask for prayers as we wait for some results regarding Blake's eyes, brain, and we will find out the plan regarding Blake's next surgery. Will try and keep you posted on the results, but for now we just ask for prayers of patience for us, and Prayers for growth and continued health for Blake! 

Saturday, June 23, 2012

The Golden Rule.

June 23, 2012
Luke 6:31 says, "As you wish that others would do to you, do so to them." 

As a child I heard this scripture a lot. 
The Golden rule. A lesson etched into your memory. 
If you are nice to people, people will be nice to you. 
If you help someone who needs it, one day when you are in need someone will help you.

Zach and I have always strived to be honest, loving, and open to all people. We try to help when needed, we always have smiles on our faces, and we hope to bring a positive attitude to friends when they need it. We have truly been blessed with loving families, with many great friends, who to us ARE family, and today we have been humbled by the support that has been shown to us from them all!  
Since April 4th, the day my water broke, we have been showered with love and support 
from our friends and family. 
Then on April 11th, when the boys were born, we were surrounded by family to share in our joy.
 Then on April 12th, when our beautiful baby Conor James passed away, we were amazed by how many friends, co-workers, and even strangers showed up to show their deepest sympathy. 
Now two and half months later, from Blake's ups and downs, the amount of people who follow our son Blake's story truly astounds us. 
Our story was shared today on 2 different TV stations, Local 7, and News 25, due to a benefit in Blake's honor being thrown at a local bar in Evansville IN. We have shared our story, and already tonight we have been overwhelmed with the donations, and amount of people who showed up for Blake's benefit! "Do to others as you would have them do to you." It is AMAZING how good people are, how much love there is! And we want everyone to know how honored we are to be on the receiving end of it all! 
We have had over 4,000 visitors in over 10 different countries follow our story and share in our journey. It is honestly so overwhelming the love and support everyone gives us, and we are positive it is all the prayers being said (and a little help from a special someone up above!) that have gotten Blake where he is today!
We hope if nothing else is learned from our experience, that people will learn to cherish each day, love endlessly, and stay a prisoner of hope...because we know miracles can happen!!
Blake is 4lbs 3oz today, at one point in our journey Blake was down to 1lb 1oz. He loves his milk, and smiles big when its feeding time!! Who knew I would ever consider my 4lb 3oz baby boy a chunkster but he is sure packing on the weight and his little rolls are to die for!! I could just cuddle and love him all day! *Daddy might get a little jealous though if I hog him too much!!* Blake remains on vapotherm oxygen at 3liters on 27% oxygen and is tolerating it so well. We are still waiting on the doctor to make a decision on when Blake's 4th surgery will be scheduled. Its really been pretty calm here in Indy for the past week or so and that is the way we like it!! We just want everyone reading this to know how much it means to Zach and I that you are reading and keeping up with our lil' man's progress! Keep on praying and I know the good Lord will answer our prayers of one day heading back to the Bluegrass state with our lil' man by our side....until then Blake will be here growing and smiling for photos for you all to see!!! 

Looking at Daddy! 
Daddy Singing "Wagonwheel" to Blake. 


Thursday, June 21, 2012

Expecting a Miracle!

June 21, 2012
Our Smiling Boy!

Whew its been one of those weeks. Busy, Busy, Busy!!! 

Blake is doing great so far with his breathing he is still on vapotherm (the oxygen that's delivered through his nose) and he is tolerating it great. Blake was on 2 Liters at 30% but, as I've told y'all before, the NICU is a roller coaster....Blake tonight started to have some episodes where his heart rate dropped a bit. His oxygen saturation however stayed up the whole time and Blake did a good job at recovering without any help, but because of the frequency, as a precaution, they went ahead and bumped him back up to 3liters on the vapotherm. That has been our ONLY bump this week though and we are OKAY with that!!! 

Blake is cute as can be now a days. He has been smiling a lot and is getting to the point he is awake for a lot longer during the days!! He is still tolerating his feeds well he is getting 32 mL every 3 hours and is now trying once a day to do non-nutritive breastfeeding. Now that Blake is older they are trying to teach him how to feed- one of the early steps to prepare is doing this non-nutritive breastfeeding. I myself had never heard of such a thing-but then again I haven't in my wildest dreams ever thought I'd know any of this! So our nurse on Monday introduced this idea to us and we went with it- and its been wonderful! What non-nutritive feedings are: The mother pumps right before its time for one of the baby's feeding times then allows the baby to breastfeed (he is just not getting a lot of milk from mom) while his actual milk is going through his feeding tube. So we did this with Blake-it allows Blake to learn to attempt to feed and breath at the same time....the next step in a few weeks will be to actual give him small amounts of milk orally to teach him to feed, breath and swallow the milk all at the same time!! It will be a LONG road but he is already showing LOTS of progress!! The nurses were very surprised at how well he did----we weren't cause...WELL YALL KNOW BLAKE! Nothing he does surprises us anymore!!

Blake's  now....are you ready... 4 lbs 2oz- Our big ol' man!!! He is growing like a weed! Its getting to point we are getting close to Blake's abdominal reconnective surgery they said 4 1/2 to 5 lbs and the way he is growing it could be a lot sooner rather than later! We will definitely be keeping yall informed of when that is coming for we certainly will need prayers for that!! (Maybe more for Mommy and Daddy's nerves than anything!) 

Last week a couple, Zach and I met up here at Riley came back and we had lunch. My friend and I were talking and discussing the bad days and the good. Discussing how sometimes we just want to shake people and tell them to quit complaining and rejoice in their life- remind people that it can be worse, and that we should enjoy life and focus on the positive. Although life can sometimes be exhausting we must rise up, and be positive and cherish every day we have! Zach and I learned this lesson real quickly with Conor's passing. My friend however referred a book to me she said its just an easy read that helps you look at life in a more positive way....I started to read this book the other day when I started to feel a little down, and I found it so helpful! I read this part and wanted to share in hopes that it might help someone who is having a bad day. 

"Remember that its always darkest before the dawn. More challenges mean you're close to your victory. Don't give up. Times may grow tough, but remember there are rewards for staying in faith. If you learn to be a prisoner of hope and get up every day expecting God's favor, you'll see God do amazing things. You'll overcome every obstacle. You'l defeat every enemy. And I believe and declare you'll see every dream, every promise God has put in your heart, come to pass."


 My wide eyed baby boy!

Blake's "My Dad is Rad" Made By Nurse Lauren!
Blake is looking a Daddy thinking......Rad?

 Blake is his UK bow tie and suspenders onesie made by Mommy!

 Mommy loving on Blake!

 Daddy loving on Blake!

Sunday, June 17, 2012

Father's Day

June 17th, 2012

My very first father's day.  This is still sinking into my head.  Father's day.  I still can't believe that I have made it here.  I have been waiting on this day for a long time.  Fatherhood has been on my agenda for a while, and getting to experience the day was overwhelming, yet bittersweet.  I have been ready for fatherhood, but to tell you the truth, I really don't feel fatherly yet.  The thing about this hospital journey is, it kind of takes away from the father role.  Whereas most fathers get to get up everyday, and help take care of their children; in the hospital, the nurses and doctors are there.  I only get to be fatherly for only short bursts throughout the day.  So it is still sinking in that, I am indeed a father.  Despite these feelings, I would not trade it for the world.  Getting to see my little man Blake grow up in front of my very own eyes has been amazing.  Everyday I get to look into his eyes is a miracle to me.  He is everything that I could ask for.  I always thought fatherhood would be scary, but seeing him fight through what he has, nothing scares me anymore.  He gives me strength I thought I would never have.  The love that runs through me is stronger than anything I have ever felt.  I will do anything for this little man.  And because of these emotions, I know that I am in fact a father.  Now I know what my father felt, and his father.  The love that a dad has for his children is remarkable, and cannot be described until you experience it.  I am thanking God everyday that I am being able to experience it.

Waking up this morning, I was surprised with a few gifts from Katie.  She got me a picture frame that said First Father's Day, as well as a watch.  The watch was engraved with both of my son's names in it.  I was overcome with emotion when I opened this.  Though I was excited for this day, I was also sad.  I was suppose to celebrate this first day with both of my boys.  I have felt like something has been missing all day.  There is nothing in the world I wouldn't do to have Conor back in this world.  To get to hold him and be a dad to him also.  You just don't know how fragile life is until you have lost someone incredibly dear to you. There is not a day that goes by that I don't think of him.  The only thing that keeps me from total sadness is knowing that I will get to see him smiling face again one day, and that he is watching over us now.  I carry a coin with me at all times.  There is a duplicate that was buried with Conor.  This is my direct link to him.  I had a long talk with him and though saddened, I know he was with me all day.  

Afterwards we walked to the hospital and Blake had made a card for me.  He had his hands and feet stamped on a card stating that he loved me and wishing me happy fathers day.  This card was also amazing because his feet have grown almost double the size since Mother's day.  It is amazing to see the growth he has done in just the short amount of time.

The footprints on the green card are from mothers day...
Bottom footprints today only one month later.

Today I was also able to share this father's day with my own father.  We went out to lunch to celebrate.  It was nice to get to spend this day with him, as being this far away any familiarity is good, but also I see him from a whole new perspective.  I see now with a new lens the ways in which he raised my brother and I.  Things make more sense now than they did when I was younger.  I have always loved my dad, but now being a dad, it makes me love and appreciate him even more.  He has been the best dad a son could ask for, and I just hope I can be half the dad he was to Blake.  

Lunch was great, but I also needed to get back to the hospital and spend some quality time with Blake also. As soon as I got back, I got Blake out of his isolette and held him as close as I could.  This is always the highlight of my day, but today was extra special.  He just kept looking at me with those big eyes, and I felt closer to him today than ever.   I could spend all day like this.  Time goes by too fast during.  I wish it would just stand still so he could stay in my arms forever, but sadly it never does, and I always have to put him back before I am ready.  This was the best first father's day I could have asked for.  

So from a first time father, I want to say Happy Father's Day to all the dads out there.  Though I am new to this, I do have a little advise.  From this crazy ride we have been on, I can only tell you to cherish everyday that you have with your kids.  You never know what tomorrow brings, so enjoy them like it is your last day. It is a great honor to be able to be a dad, so be the best one you can be.  Do it with all your ability.  My dad did for me, and I am for Blake.  Happy Father's day.

Blake in his Daddy's Allstar Outfit.
 Daddy lovin on Blake.
Blake smiling BIG! 
 Happy Father's Day!
 Father and Son moments.

 Proud Daddy!!
Daddy's Little Allstar!
 Blake is tuckered out....snoozing.


Saturday, June 16, 2012

Goodbye Mask..

June 16, 2012
Goodbye Mask...
Hello my Pretty boy...
Another BIG day in Blake's roller coaster ride- Blake was taken off the CPAP and placed on Vapotherm (Oxygen given through a nasal cannula that is humidified) Blake has been doing well with the switch and is on 4 liters at 30% oxygen, and his oxygen saturations have been stable around 98-100%!! We will be on this type of oxygen therapy now for a LONG while, and hopefully he will tolerate it well and just continue to feed and grow- and to get big enough to get his surgery and go home!! AND GOING HOME IS OUR GOAL!!!
More updates-Blake is now getting 29ml of breastmilk every 3 hours and he is still tolerating it well.
The doctors also did a repeat urine culture to make sure he didn't have any infection and they have come back NEGATIVE!! No more Urinary Tract Infection! They will be keeping a close eye on him though to make sure he doesn't get another one, but for now the antibotics have been stopped and Blake is doing well.

 Blake has had an eventful day!! He got to visit with almost all his grandparents all but 2- His Grandmo Monica and Grandpa Mark were here to see his pretty face and so was Grandma Pam and Grandpa Mike!! IT was a good day, he was a happy baby, slept most of the time but woke up to say hello to them all, and receive some loving on too!

I can do all things through Christ who strengthens me.
- Philippians 4:13

Blake even sported his UK hat at Riley to all those IU fans!!
He is ready to be out of Indiana and see what he has been missing out on in the bluegrass state!!
Daddy was all smiles today to be able to see Blake's face free of tubes everywhere!!

 Mommy was pretty excited too!! 
 Nothing better in the world that holding and singing to our sweet little boy!
 Daddy's boy through and through!

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