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

Be proud to be proud

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Going for a walk with big brothers

I recently realized that by not posting when things are going well, I am basically saying that Thomas's story isn't worth telling unless he is hospitalized or struggling through a complication of his diagnosis. This simply can't be allowed to continue because just look at this face....

So in order to rectify this travesty that I have committed, I will attempt to catch you up on this little boy. He is still working hard on his rolling and is getting closer. He can sit unassisted, which makes him so happy to be able to watch his brothers play and just to see all that goes on around him....like his brothers playing. His sitting has helped him use a high chair now when he eats, which he is also a big fan of. Eating has been slow going, he has trouble with chewing and sometimes gags and then loses all the food that he has eaten, so sometimes it feels like two steps forward and one step back, but we keep working on it and any progress is good progress. Luckily he nurses well still and is able to get good nutrition from that.  He is the most laid back and agreeable baby I have ever been around. He loves to be held and is quite the snuggler. He absolutely adores John, his oldest brother, and he tolerates David, the middle brother. He laughs from a deep down belly place when John plays with him and he loves peek-a-boo. He does not handle the heat well, mostly due to his bladder medication, and he turns bright red, but he is always a trooper about it.
I can't believe he is almost 1! I can't believe that it has been over a year that I have been writing about this sweet baby. Even before we met him, he impacted our lives deeper than we knew he could.  I am so so proud of my littlest boy and I know that he is making great progress and he has come remarkably far from where he started, but I have those moments still. Those moments of searching a stranger's face when they ask how old my baby is and I answer...they are wondering why he's not rolling...he's not talking....he's not eating....hes' not interacting more. I immediately feel the need to stand up for him and explain he has spina bifida. He couldn't breath for the first 6 months of his life. You should see all that he has been through. Then I catch myself. Why do I need to qualify his achievements? As he gets older, what kind of precedent does that set for him if I am constantly saying, well he has spina bifida, give him a break. I need to learn to stop comparing and to stop putting any thought towards what others may think, if I am proud of Thomas, then I need to be proud of Thomas, end of story. As I have reminded myself of this over the past few weeks, I have come to see what peace it has brought. When I talk to people about their kids or even just their life, I find myself not asking questions that lead to comparing or assuming. Instead of "oh he must be crawling everywhere now' or 'is he walking', I ask 'what do you enjoy most about this age'.  I have found that it disarms people and they talk a lot more about real moments rather than saying 'well, he's not walking yet, but he is so close' or 'he probably isn't walking because...' and it leads to a real conversation rather than a contest to see who is the better parent or who is happier. This has made me realize that all of us try to qualify achievements or make excuses for something that we fear may not be seen as good enough, not just special needs parents, and it can be exhausting. By helping people erase the need to compete by choosing how we interact with them, whether consciously or not, they open up more and real connection happens. When real connection happens, we feel much less lonely. Sometimes parenting, and life, can feel lonely and exhausting and something as simple as a quick connection can turn a whole day around. Try it for a day, be aware of how you interact, even if it's not about parenting. Ask a real question that you are interested in and lend a real ear to listen, without interjecting a story of your own or comparing their experience to yours. Hopefully you will like what happens as much as I have and if you do then you have this little superhero to thank!

Those highs

Thomas is really blossoming. To an outsider it would be hard to notice, but his changes and development are so drastic and monumental to us that I can't help but share them. 

He babbles and sings back to us, he laughs at moments when we are laughing. His interaction and desire to insert himself in conversations is something I wasn't sure he would ever have. He is really showing his determination, also. He wants to move!! He is 9 months old (I had to read that twice just to believe it!!) and he wants to get around. We weren't sure what kind of real mobility he would have, but he is beginning to roll. I know that at nine months rolling shouldn't be such a celebration, but in our house it is!! He is so determined to do it, but you can see how hard it is for him, which makes it more of a tribute to his perseverance. It is wonderful to see these traits like determination, perseverance and stubbornness play a role in his daily life OUTSIDE of the hospital. We knew he had these traits all along, but he was only able to show us in his battle for breathing, or determination (also pronounced stubbornness) to nurse when no doctor thought he could. Now to see those same characteristics propelling him towards new goals, well,  it's one of those incredible highs you always know will accompany some of the lows of spina bifida and it brings me to tears just getting a glimpse of what this little man of ours is going to accomplish!! 

Thomas visits Cincinnati

We had our scheduled Spina Bifida clinic today. It was terrific to go to the hospital for a planned appointment AND have it go unexpectedly well! It definitely seemed more like a visit than the hospital trips we are used to having.

We started the day with a renal ultrasound to image his bladder and kidneys. When we had this imaging done in January, there was some swelling in his left kidney that was worrisome to his urologist. He was concerned Thomas may be having some reflux from his bladder up into his kidneys, which could be causing kidney damage (this is VERY BAD!). Also, any UTI or bacteria in his urine, would be much more dangerous if he had relux since we would not want any infection presenting in his kidneys. However, the ultrasound showed not only had his kidney stopped swelling, it had actually gone back to normal size and shape. This was wonderful news to start our appointment day.

Next up was a VCUG (voiding cystourethrogram). This test is used to show if he is having any of the 5 stages of reflux from his bladder back up the ureters into his kidney. While stage 5 is the worst, we really would want to have no reflux. They insert a catheter to drain his bladder, then use that same catheter to fill it back up with a dye that they can see on the x-ray. While filling his bladder we watch in real time on the screen to see where the fluid goes. I was butterfly-in-the-stomach nervous for this one. Since we knew his kidney had demonstrated some swelling in previous months, I figured that he was going to have some mild reflux and we would have to start some daily prophylactic antibiotic meds. While, of course, we would do this if it was needed to save his kidneys, daily antibiotic use is not really on the list of things I would like to have my child doing. Watching his little bladder fill up on the screen and desperately not wanting to see the dark dye veer off of the main body of the bladder like octopus tentacles, I held my breath. The very nice Radiologist Assistant was making small talk about how good Thomas was being, but I didn't pay much attention and mostly tuned him out. I already know how awesome my kid is, we don't have to discuss it right now...talk to me about if I am seeing this correctly!! Finally his bladder was full and we just waited, nothing happened, he didn't pee out the dye, but he also didn't reflux it at all!!! YAYYYY!! Kidneys are safe for now and we don't have to change anything we are doing!! Another great appointment!

Thomas waiting patiently for his VCUG to start

Then we headed across the street to our main clinic appointments. The Physical Medicine doctors were first and if you read the post from last time (post is "OUR LITTLE SNOWFLAKE") you might remember that it was a tough appointment. We still weren't sure if he could see very well and his movement had decreased dramatically. I left that appointment feeling very defeated and worried that his challenges would be quite difficult. This time, though, they were basically jumping up and down with how well he was doing. He was kicking both legs (moving at the hips AND knees) and even some ankle movement in the right leg.  They said phrases like, "WHEN he starts pulling to stand" or "WHEN his mobility increases" basically music to my ears! They literally could not believe it! Turns out once you can breath, everything else is a little easier!

Next we met with the Urology Nurse Practitioner and she just confirmed all we had done in the morning at the main hospital was good. We don't need to increase the ditropan or cathing and it is safe to let him sleep at night and not have to wake him up to cath in the middle of the night (this was up there for the best news of the day as far as I am concerned - mama needs her sleep!!!).  She also let us know the results of the formal urodynamics that we had done last week. When we had this test done in January his bladder was only holding 15 mL, this time, it held 120mL and leaked a bit at 70mL. This is much more age and weight appropriate and tells us the ditropan is doing it's job. Then the Developmental Pediatrician came in and was also blown away by how different Thomas is since surgery. Last time, he was concerned about the lack of weight gain and labored breathing. Well, Thomas has picked back up on the weight gain and is almost back on the curve of what they deem to be "normal" so he had NO CONCERNS!!! Normally we leave appointments with new things we have to add to Thomas's repertoire to adjust or support his spina bifida diagnosis, but today we left with instructions to increase tummy time and put toys out of reach so he can start to move around more.....that's just normal baby stuff that all parents hear! It was wonderful to get 'typical' instructions for a change! And on top of it all, Thomas was the belle of the ball. He smiled and coo'ed at every doctor that came in. They tried to upset him so they could see how much he moved when he was really mad, but he would not get upset, it was really quite entertaining. He would just look at them and giggle when they would poke him or pinch him. He just was the most content guy and everyone that came in contact with him got a smile today. He was the favorite patient of the day (doctors words, not mine) like he is everyday (my words)!

Thomas loving the attention and everyone oohing and aahing over how well he is doing

 We were home in record time from a clinic day! Next appointment is Thursday and it is back to the OR to be scoped by ENT again to see how his airway is still healing.

Deep silent breaths

We have been home for almost a week. Give or take the initial adjusting period and some slight withdrawal symptoms, it has been wonderful to be back together. Thomas continues to grow and make leaps and bounds in his development. He is not only seeing us and responding to us, he is babbling more and more and reaching for toys. It's simply amazing how awake he is and aware he seems. He is finally sleeping well and through the night and appears to be happy to be home and settled! 

He has a procedure tomorrow to go back to the OR so they can scope him again and possibly dilate, but it should be an outpatient procedure. It feels complete and peaceful for all of us to be together!!