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 Tuesday...one regarding his brain, one his eyes, and another regarding his belly.

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.

EYES:
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.....

BRAIN: 
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....
#1 
Blake has overcome so much already.  
4 procedures.
3 surgeries. 
3 different ventilators-Conventional, Oscillator, and the infamous JET.
SiPap.
Cpap.
Vapotherm.
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!!

#3.
 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 now..so 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!

13 comments:

  1. Wow, I am praying!!! I know God has this!

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  2. Will keep the prayers and positive thoughts coming!

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  3. Will pray and pray hard. God bless!

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  4. Lots of prayers sent your way!! Blake is one tough cookie!! Have been thinking about you and your family for months and will continue thinking about you until you bring that sweet baby home!!

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  5. Praying hard! Blake is such a fighter!

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  6. Praying for you guys every day. Love the monkey suit!! Love you guys

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  7. Praying for him!! He is such a strong little boy and is such a little fighter! Our God is an awesome God.

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  8. Praying for baby Blake as his three surgeries all take place in two days! The lord is by his side, your side, the doctors side. God and Conor will protect Blake!!!!!! Lots of love for Blake, he is so precious.

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  9. Lindsey SchwartzJuly 3, 2012 at 2:25 PM

    Still praying for Blake and his mommy and daddy too! He is such a strong little boy and I'm sure he will pull through this as he has everything else that has been thrown his way. Prayers going up now

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  11. Just saw your picture on the Chive and was immediately brought to tears and I am a 240lb tough guy. 15 years ago we had twin boys born at 28 weeks. Our big guy was 2 lbs 12oz, and his little brother was 1 lb 13oz. I will spare all the details since you are living them yourselves. They both made it - but it was not easy. The big guy does have some issues but the little guy is now 6ft tall and an avid weightlifter (has not had his shirt on all summer). What got us thru it all was love and laughter and it will get you thru all you are going thru too. No one knows what you are going thru, not even us, but I KNOW this - you are great parents. KCCO

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  12. What a tough little fella! I'm amazed (and a little overwhelmed) by the strength and determination that you all have shown as a family. My baby brother was a preemie and he's made it through all the way to adulthood(he is a little weird, but hey). Miracles do happen and I'm pulling for all of you guys.

    I will spend some time praying for Blake and send some positive vibes (and maybe a little bit of money) his way.

    KCCO!

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