Surgery is over- recovery begins.

This morning bright and early we got up, stomach in knots to take our son yet to another surgery. We trust the doctors here at Riley, and know he is in wonderfully capable hands but it surely doesn't make things any easier. Blake was such a trooper before surgery this morning. We are those parents, that are always there, right by his side, prolly in the way- and yes I am that Mother that when they offered that I could jump in bed with him to ride to OR, I didn't think twice. So four feet in the air, I jumped on in to his crib and away we went daddy in tow taking pictures all the way.




















Surgery lasted a little over 2 hours. It was excruciating waiting, not knowing, playing all the scenarios of what could happen in your head. When Dr. Ackerman finally came out and told us his surgery went exactly 'text book' no surprises and they should be calling us back anytime. It was like a huge weight lifted off my shoulders and that twisting feeling in my gut....lightened....it didn't fully go away until I saw our sweet boy! Blake's ventricular shunt is now draining the excess fluid on his brain directly into his bloodstream, as the end of the shunt is located in the right atrium of his heart rather than into his belly and so far no problems. Blood pressure is good, oxygen and heart rate is good, and he is resting well. We will however, just like the first shunt be very observant in watching closely for signs of infection, malfunctions, and bleeding.

We are continuing out our 7 day treatment of antibiotics and he will stay on the neuro unit to watch for any neurological changes. (With the shunt being in his brain they must always watch for any change in behavior, tiredness, or motor abilities). So far so good. Our little miracle baby is still just as miraculous as ever as our little boy!

Yet another surgery.

We are here at Riley just preparing for Blake's surgery number....oh lord, who knows, they're all getting fuzzy and running together at this point. I think it's 11.

Blake is scheduled to have surgery tomorrow at 7:30. They are replacing his shunt, however because all cultures of the fluid in Blake's stomach have been negative for infection they don't believe some sort of virus that caused Blake to hold fluid into his abdomen causing the severe distention. They believe that his shunt didn't necessarily malfunction but rather as he has grown his stomach can no longer tolerate the amount of fluid draining from his shunt.

So what does that mean? Dr. Ackerman, his neurosurgeon, believe Blake's stomach is no longer a viable option for the shunt to drain to, so instead of placing the end catheter in his belly they are placing it into his right atrium of his heart to be absorbed into the blood stream. They will have a general surgeon, neurosurgeon in the operating room.

He had an ultrasound this morning and he still has some fluid in his belly, we are still uncertain if they plan on draining the rest in surgery or not. Which would entail sticking a needle into the area and aspirating the fluid out.

We are looking forward to Blake being able move a little more freely after this surgery, but with every surgery, especially one involving his shunt and heart always make us nervous. We will be trying to update everyone once he is out of surgery and in recovery.


Blake was able to make an escape from his room today. A trip to ultrasound in his fancy Riley's red wagon. He loved every second of his freedom he was given!








Gotta have our blanket everywhere we go!

Mothers Day Hospital Style!

So not exactly how I wanted to spend my 3rd Mother's Day. I've now spent two of the three at Riley hospital in Indy. My first Mother's Day Blake measured 13 inches and weighed 1lb 13 oz....this Mother's Day he is 33in and weighs 21lbs 8oz. That Mother's Day I couldn't hold my baby and today I've loved on him as much as possible!

But one thing that has not changed my day was spent loving whole heartedly the three most amazing men I know....Zach, Blake and Conor Hargis! What a lucky girl I am to have so many loves of my life!

Becoming aquatinted with Riley again!

So on Thursday Zach and I took Zach to the doctor because Blake had a very large distended belly that was rock solid- it had become larger last week but really intensified on Wednesday-although he was acting normal, no fevers, eating and drinking fine I just felt in my gut something was wrong. So we had a X-ray and Ultrasound done of his stomach and from there we were told that we could take him but that we needed to go to Riley hospital as soon as possible. Blake's neurosurgeon was called and she warned us we would be here for weeks based on what the radiologist was saying at gateway. We arrived to Riley at 7 Thursday night and were prepped and taken to surgery that night. Blake's shunt had malfunctioned and was no longer draining into his stomach and what had drained had accumulated and was not absorbing but rather was just sitting in his stomach. They cut his shunt at his abdomen site and pulled the tubing out of his abdomen and hooked it to a drain outside the body. This will be there for at least a week if not a little longer allowing his belly to rest and awaiting all cultures to be finalized. They then drained the extra fluid that was sitting in his belly which was almost a liter. He went from 23 pounds 14 ounces to 21 pounds 7 ounces all within an hour.

Yesterday Blake slept most of the day, and had a PICC line placed. He was quite fussy, and lethargic throughout the day.

Blake is more awake today, decided to be more like himself at around 2 this morning...which meant not much sleep for momma and daddy! But we couldn't be happier that he is smiling again! He was allowed to get in a highchair today which he loved. He ate for the first time in two days. He still isn't drinking much still but has IV fluids going. The hardest part is that he will not be allowed to get up or move around for the next few weeks and the more he feels better the more he wants to, and the more he wants too the more frustrated he gets! The externalized ventricular drain comes out from an incision in his belly and is Hooked to a drain. So his shunt remains in his brain but the tubing has just been placed outside of his body so all CSF fluid is drained into a bag rather than into his stomach. (Clear as mud right?) That drain must be leveled at all times and he can not sit up but for thirty minute increments and when he is sitting up the drain is clamped. (Did I mention I'm a cardiac nurse and HATE all things neuro...they make my brain hurt....go figure!) luckily we don't have to understand too much of it as Blake has a sitter at his bedside at all times to protect the drain and prevent infection into the shunt tract. Thanks everyone for the thoughts and prayers we sure appreciate it!!!


Blake on the way to Riley- you'd never know that boy was sick!


You can kinda see how his shirt would not go over his big ol' belly.


As soon as we got to the hospital Blake was not a happy camper.





Blake was taken to surgery and this was post-op in the recovery room. He was extubated and doing well had some issues with his oxygen here and there but really was great!


Yesterday the bub was soooo blah and sleepy.





Until late last night when he was finally able to sit up and watch Mickey!





Today they allowed him to sit in a high chair for a little bit.





That made him very happy!!!

a STEP in the right direction.

Everyday we talk, we tell people what we need, what we want. Everyday we walk, if we want something from across the room we simply get up, move our legs one foot after the other, and we go get what we are after. These things that seem so simple, things that everyone learns at such a young age....these are the things that we take for granted. What if you were unable to tell someone you were thirsty, unable to voice that our stomach was upset. What if when you spotted your, let's say phone across the room and you wanted it- but yet you were unable to get up and get it- or even ask someone to get if for you? What would you do?

Zach and I see it everywhere. Our friends, our family, even complete strangers with their children....the kids are running, playing, wobbling here and there. They want a toy, they go get it. They want a drink, they yell and point "momma drink!". Yet here is Blake, the poor boy can't just get up and go get the ball in the corner of the living room, he can't ask for his sippy so he can take a drink. These simple tasks that are easily learned are things Blake struggles with everyday. And as his mother, his father it's something that breaks our hearts. It's so hard to see the frustration of being unable to communicate. The frustration of not being able to just simply get what he is after. These frustrations usually lead to tantrums of the umpteenth degree...throwing foods clear across the room because that's not what he wanted, or literally chucking his drink clearly at our heads because that too was not what he was requesting. It's frustrating!

We all picture this life after your first child. The life of wonder, and excitement, and play! We never picture a life of therapy, and doctors appointments, and drawing up medications three times a day. We wouldn't change our lives, for it has lead us to be thankful for things that we so normally took for granted. We take pride and get so SO excited over the little victories! It doesn't, however, change the fact that we wish things were just a little- okay ALOT easier for Blake. We wish it didn't take up so much energy to do life's most simple tasks.

We are getting much closer to independence these days though. Today was a BIG day- it didn't go quite as I had made it up in my head but it's still a "step" in the right direction! PUN completely intended.....

Today Blake was introduced to a gait trainer. It is a device to help teach Blake to walk. We have waited patiently, we have worked very hard on getting Blake to a point of independence...being able to crawl, pull up on small things, sitting, and working getting up on his hands and knees. These were all the things Blake had to master before getting to a point of even discussing teaching him to walk. These are the things we do everyday! We stretch, we stretch some more, we work therapy into play everyday! And today we finally get the big pay off!......unfortunately, we didn't take into account that Blake always....ALWAYS.....hates all things new in therapy! So we will count today as an introducing day and really if you minus the constant crying, and terrified look in his face Blake did amazing! He took steps on his own, he moved forward and he held his weight relatively well! We will take it as a win- just maybe hoping for no tears or tantrums the next go around!

Time for your Check-up

Blake's 2 year check-up time! Blake came in weighing a small 21lbs 9 ounces...we are getting there we've been stuck in the lower 20's for quite a long time now. Still not making it on the growth charts....his height however he is in the 10th percentile for his actual age at 33inches!



Blake will be meeting yet another new doctor at the end of this month, a Pulmonoglist from Riley. Blake has had an area under his right chest that concaves in for what seems like forever. So for our peace of mind we are having it looked at, hoping it is nothing! Prayers would be appreciated!!



You can see the area slightly below his armpit.


We have also over the past few month been taking Valuim for his cerebral palsy for muscle tone. It has been a GREAT help. Zach and I were very hesitate at first to start the medication worried it would hinder his progress by Over relaxing his muscles. However, after many discussions weighing pros and cons we decided it best to try it....and if we didn't like the effects we could stop the medication! However, since starting it, Blake uses his left hand much more, he is able to pull up on his toys, not perfectly mind you, but pretty darn good! And hopefully now that we have mastered hands and knees we are hoping to start gait training with a Walker this week!!

2nd Birthday

A few weekends ago we celebrated Blake's 2nd Farm Birthday! It was a complete success with beautiful weather and despite missing a special little boy we felt an overwhelming sense of love all day!!! Happy birthday sweet boys!