My bad ass 'bif baby

Thomas had shunt revision surgery at 8:00 pm, August 4th. He was NPO ALL DAY!!! This means he couldn't take any food by mouth. He had an IV in so he wouldn't get dehydrated, but that is not the same as eating and usually he is super cranky if I am there while he is hungry and I have the audacity to not let him nurse. For some reason though, he was perfectly pleasant. He played and laughed and interacted and made me doubt why we were even there. When the neurosurgeon came in, he seemed to be questioning if we should go ahead with the surgery, but the information that we had - the shunt tap not being able to get much fluid back and the ventricles being enlarged - all pointed towards something going wrong with the shunt. They took him to the OR around 7:30 and the doctor came out to talk to us about 10:00. He had a plastic bag with him that had something in it I didn't pay much attention to it at first because I was trying to read his face. As he began to speak, he said Thomas was fine, but his shunt was basically completely clogged  and he reached into the bag. He had brought the proximal catheter of the shunt to show us and on the tubing was the stuff that was clogging it, the choroid plexus. I love medical stuff, I wanted to watch my C-section, I don't get quesy with stuff like that, in fact I find it very interesting, but the thought that part of my baby's brain was in that bag and had been clogging his shunt made my knees a little weak. He proceeded to tell us that he was surprised by how clogged the  shunt was since earlier in the day Thomas was acting so normal. Part of me beamed with pride at my tough little man, but part of me felt nauseous that he could have been living with this pain in his head for quite sometime and we didn't even know, that maybe he didn't know what it was like to live without pain. The important thing is now the shunt was fixed and he was in recovery so we could go see him. He looked so completely exhausted when we got to him, but when he heard our voices he strained to see us and open his eyes. He even gave John a sweet little smile that seemed to take all the energy he could muster. He slept great that night and hit all his post op milestones the next day so they sent us home on Thursday! He is doing incredible. He babbles more and is very alert to everything going on around him. He seems to be brighter and more focused. This is the point where we could start to worry about how we will know if this starts to happen again, but taking my lead from one of Thomas's many lessons he has imparted on us, I choose to enjoy this time. Be here and revel in it. He's healthy, he's home and he's happy!! 

Off to the OR

Well after a day of sitting here for observation, Thomas's neurosurgeon has decided that surgery is a good idea. They tapped his shunt yesterday, meaning they stuck a needle into his shunt reservoir and drew out some fluid which can help them test the pressure and see the flow of Cerebral Spinal Fluid (CSF), as well as test it for infection. They weren't able to get a lot of fluid, which was concerning and can indicate a blockage in the proximal catheter (the part of the shunt that goes into his brain). So that, compounded with the increase in his ventricles, led the surgeon to believe a shunt revision surgery would be the best option. So Thomas is an add-on today for the OR room, which is about as much fun as dancing barefoot on a floor carpeted with Legos. It means Thomas is not allowed to eat starting at midnight and lasting until after surgery when the anesthesia wears off and the surgery could possibly be as late as 8pm, not a great equation for a happy one year old. We just wait. And wait. And try not to think about food.  It is noon right now and actually he has been amazing. Hoping we get the call soon. 

You snooze, you lose

Thomas turned one two weeks ago and on July 31 it was the one year anniversary of the day our family lived together under one roof, the day he came home from the NICU! As these momentous occasions approached, I felt I needed to post something to give them their due celebration....but I was having trouble. I felt I couldn't find the words that would really give justice to those life changing events. I wanted to speak from the heart and show how much he has grown and taught us and all he had been through. To really pay tribute to an amazing first year of life.  On more than one occasion I sat at the computer wanting to put it all into words, but everything I would type just didn't seem enough. It never was what Thomas deserved. It didn't express the magnitude of emotion that was tied into the anniversary. So his birthday came and went and then July 31 came and went. I even came across this bottle of pumped milk that was the last bottle of milk I pumped in the hospital before we brought him home and became his parents without doctors looking over our shoulder.

That has to be gold, right? Where was my epiphany? Why couldn't I find the perfect words? It had been an amazingly hard and joyous year and I should be able to do this and share it with all those following Thomas's journey....

In true Thomas fashion, he found a way to make a point to me. About a month ago we had a bladder ultrasound and it showed his bladder wall had thickened. This is concerning because it means that his bladder is working harder than it should. The bladder is a muscle and the more it works the larger it gets, but with size you lose elasticity and a bladder needs elasticity to expand and hold urine. Thomas's bladder was constantly working to empty itself, but because his bladder and sphincter don't communicate properly, due to the nerve damage caused by his spina bifida, the sphincter wouldn't open. This led the bladder to work with no progress. Much like if we were to constantly push against the ground as hard as we can without stopping. We weren't sure what was causing this, but we needed to figure it out so we can stop the damage. This lead us to an appointment with neurosurgery because it could all point back to the shunt or even be a tethered cord that needs to be dealt with. These are things we can't see and are close to impossible to recognize in the lack of big red flag-like symptoms. The neurosurgeons were concerned and sent us to get a limited brain MRI. They mentioned to pack a bag when we went to the appointment in case he needed to be admitted for a shunt revision based on the scans. The MRI was on a Friday and they let us go home based on what they saw, but Sunday morning we got a call to come to the hospital because his ventricles were increased. 

The left picture is his scan from Friday and the right picture is his scan from December. The arrows are pointing towards his ventricles and you can see from the white space (which is fluid) how much larger the ventricle is now.

So in we came. With no real plan or clear course of action, we have been here for a day. Something is different, he is a little fussier than usual, seems a little more agitated, isn't sitting as well as he used to, but no real obvious signs of anything going wrong. Those could all be teeth coming in, he's getting sick, or any number of typical baby things. So they are observing him. 

And here we are, I am again writing while we are in the hospital. Instead of celebrating his wonderful birthday or homecoming, we are informing everyone of a hospital stay. I hate that. He is so much more than hospital stay after hospital stay and I wanted to write about that. I wanted to share his joys, but because I was so worried about being perfect and having the exact right words, I missed the chance. And that is where Thomas comes in, he found a way to tell me that perfect is dumb. I can't let the perfect get in the way of getting it done. It's almost like he's channeling NIKE....just do it. Stop thinking and worrying if it's good enough....it already is and if you freeze from fear of less than perfection, you will miss your shot. Luckily he chose to show me this over a missed blog post rather than a missed memory or something bigger. I won't let that happen! Message received, little dude! I am here and will be the mom you need all the time and without second guessing what I am doing, it won't be perfect, but it will be me, and that's what you need! 

FaceTiming with his brothers