Just wait (part 1)

Darkness. Crying. Questioning. More crying. How did this happen? What did I do wrong to cause this? Will the baby be ok? What about John and I, can we do this? Will this kid know us? Will this child love us? Will Johnny and David feel neglected? Will I ever smile and laugh again? What is going to change?

One year ago today, was our Diagnosis day. It played out in a fortuitous manner. I thought I had the ultrasound on a Monday, so I had arranged for my mom to come sit with the two older boys at our house while I ran to the OB, had the ultrasound done and then came right back. We weren't going to find out the gender and this was the third kiddo, so I didn't feel like it was going to be an eventful day and I was fine to just go alone. When I got to the office to check in, they didn't have my appointment in their schedule. They didn't have any record of me making my 20 week appointment/ultrasound. How is that possible, you make the next appointment as you leave from each appointment. I don't understand how it happened, but I am appreciative it went down like that. I went home with an appointment to come back on Wednesday. For some reason, on Wednesday, my mom decided to come with me and we brought both older boys. For this, I am thankful. I am glad that I didn't face this day alone and even though, I am sure, my mom remembers the day differently and probably feels that she didn't do much, I can't imagine being there by myself when it all went down. I was excited to let the soon to be big brothers see a picture of their younger sibling and help them to understand more of what was happening inside mommy's big ol' belly (I would love to say it wasn't that big yet, but let's be honest...big 'ol is probably a nice way of describing the bump at this time). During the ultrasound, we were lighthearted, joking around and not really paying attention. The tech asked us if we wanted to know the gender and since we didn't, we should turn away. It is crystal clear in my mind. Johnny had on a red shirt and wanted to hold hands with me while they were rubbing my belly with the wand. Even now recounting that day and moment makes my stomach turn and takes my breath away. The tech was not joking around with us, she did not seem to interact with my beyond adorable boys, which is odd because they are hilarious (crazy, but hilarious). Side note, I am not biased. I remember thinking she was quiet, but didn't think much of it. When we were all done, she left the room quickly and it definitely caught my attention. She came back in after what was probably 2 minutes, but felt like an hour, and said the doctor needed to talk to me and would I want to do it alone or with my boys and mom. My knees buckled and immediately tears began to form. Something was wrong. Something was very wrong. I couldn't breathe. I couldn't see. She walked us down the hall to a different room. There was no hiding my tears. We sat in the different room for who knows how long. I couldn't catch my breath. Johnny asked me why I was crying, was I hurt? Was I sad? I just hugged him close, I didn't know what to say to my 3 year old. Yes I was hurt, yes I was sad. So I just hugged him and tried to breathe. Finally, he very solemnly admitted that he had to use the bathroom. He was just recently potty trained and he didn't quite know how to hold it long enough for us to wait for the doctor first. So my mom took both boys and went to the potty. While she was gone, the doctor came in. For some reason, I remember being able to control myself while she spoke. She sat directly next to me and leaned close as she spoke, like she was saying something shameful. They saw something on the ultrasound, the baby had an opening in the spine. It is called spina bifida. Had I heard of it? It is permanently disabling. They want me to go to a specialist to learn more. My mom came back in with the boys and I, once again, lost my marbles. I asked the doctor to explain it again because I couldn't form words to say it out loud. She explained it again to my mom. Once again, Johnny was beside me asking me what was wrong, why was I crying. We eventually walked out through the waiting area and I was very aware of all the eyes on me as it was clear I couldn't pull myself together. I was the person in that room that everyone was glad they weren't. I was the cautionary tale that things can go wrong. I remember getting to the car and somehow loading the boys in and I told my mom that I wanted to drive, I needed to be in control of something. I needed to have to think about something other than what was happening. It was very surreal and I was hoping to wake up from this nightmare at any moment. I laid my head on the steering wheel and gave myself a pep talk. Get home. Just get home. Get your boys back to their toys and their safe place so they will stop worrying about you. Drive. Once we got home and after my mom had called John at work, I escaped to my room and curled into a ball and allowed myself to completely crumble. I have never cried like I cried then. I distinctly remember shaking uncontrollably, thinking I couldn't stop. How was this going to end? Will I cry here, like this, forever? I felt sick, not nauseous, not a headache, just sick, like my body was failing me. I remember feeling betrayed that my body couldn't do what it was supposed to do. My job in this deal is to make and carry a healthy baby and I was unable to do it. Every mom wonders if they will be able to do the mom thing, no matter what number pregnancy it is, if they will be good enough. If they will be the mom they always pictured themselves being. I felt that the glaring answer to this, for me, was a loud and definitive, 'NO'! I had already let down my baby. This was the darkest and worst morning of my life. I will always remember it as vividly as if it were yesterday. I don't regret all the feelings I had that day. I don't regret the sadness and the grief. I had to go through all of that. But if I could say one thing to that me, if I could get a message back to diagnosis day Sarah, it would be....just wait....

Stand Up

Even though I knew this was going to be a milestone year for Thomas, this moment with his AFO (ankle foot orthotic) on for the first time will be forever etched in my mind....

The look on his face when he stood for the first time was one of joy, confusion and determination. He loved it. Something he has wanted to do for so long and he was suddenly able. I know this isn't the first time that he has accomplished something that was such a struggle for him, and it certainly won't be the last, but to see him do it for the first time still brought a tear, or twenty, to my eyes! Love my guy!

Diagnosis Day - Year 2

It seems like a funny thing to recognize the anniversary of this day. Last year I wrote about the diagnosis day experience and what I would say to myself from my rear view perspectacles, here and here. This year what strikes me most are the lessons that have come my way thanks to my little 4-eyed man (note: yes, I can call him 4 eyes, but the first time some little smart mouthed nugget does, we will have words).

Our world has grown thanks to this little boy! In a beautiful way, we have been opened to so many new people, all of whom have had an impact. From helping us find the right surgery to help Thomas breathe to giving advice on which color glasses look great on him. These communities of people that we have been connected with have shown me new meanings of friendship. The special needs community is one many people don't see, not because of any fault of their own, just because it is not part of their everyday life. But once you are open to this community, it grabs your heart. The families and individuals we have met, whether in person or virtually, through Thomas' journey have left their mark on our hearts and I make an effort whenever possible to help advocate or extend some love in any way possible to any member of that community. The struggles some have to go through can leave you with heart aches, but the grace in which they do so can inspire you beyond your imagination. It's like our family grew exponentially to include people we have never met, but love as though we have known them our whole life.

I have also learned not to worry about Thomas' WHOLE life right now. In the beginning, it seemed daunting and overwhelming to think about all Thomas would need to do.  The other day we were given a printout of his upcoming appointments for the next 4 months, it was 5 pages long. Just appointments listed out with time and location....5 pages for 4 months! And on top of that, I find myself thinking down the road to school age, teenage years or even adulthood. How will all of this be for him? What will he need? What if we aren't around to help him? Will he be happy? Will his differences make him sad? Proud? What questions will he have? Will I have answers? You see where this can go...the rabbit hole of it all can swallow you quickly. So my focus is now, it has to be. What can we be doing right now that will help him, right now. Go up each stair separately and celebrate each stair individually.

Along with focusing on the little picture, I have learned to be lighter on myself with the ever hovering parent guilt. Thomas is little boy #3 in my life and over the years my time (and maybe patience) has decreased dramatically, while wrinkles and gray hairs have increased. I don't get as much one on one time with him as I am sure he needs. There is more that I could be doing with him and I am the first to remind myself of that. In those moments, I really like my iPhone (typically technology is not my friend, I am still a little foggy on this whole cloud situation) because I can look back very quickly and not only see a happy, smiling little boy who is loved by everyone, but also see how far he has come. Last year he wasn't able to even smile at us and we were in the hospital PICU monthly it seemed like. This year, he is signing all kids of words, laughing at his mommy's best jokes, rolling and playing with his brothers. All of this helps shield the guilt for a while to give me a breath and allow myself some grace. I am doing what I can and I am doing it all out of love and that is the most important thing.

In learning to be lighter with myself, I have become lighter with my perception of others. Everyone's path is hard. The struggles people go through are unique to them and just because an outsider's uninformed view of their struggle may make it seem less intense, it doesn't lessen the intensity to that person and I have learned to respect that. If someone is having a hard time, whether it be from marital problems to parenting issues to a blueberry stain on their carpet, they talk about it because it weighs heavily on them and they would like support bearing that weight. The support could be just ears to listen or it could be brainstorming a solution, but it is support nonetheless, not judgement.

Since Diagnosis day, I have changed. On that day my heart broke into what felt like a million pieces that would never be whole again, but Thomas not only put those pieces back together, he is some sort of genius that made them come together to form a bigger, more understanding and more loving aortic valve for his momma. And I will be forever thankful for that!

A year of breathing

One year ago, Thomas came home a new kiddo! He had his airway surgery on Feb 18th, 2015 and he was taken out of sedation on March 6th and then we got to come home on March 11th!! I wrote about it last year here and more here. It seems like many lifetimes ago that he had his stridor and sounded like this...

People would stop me in the grocery store and tell me to go to the hospital. When we were at the hospital for a normal appointment, nurses and doctors would come from around corners and ask if we needed them to call the emergency team. I don't miss that.

Now he sounds like this...

It's been 365 days that he can breathe and he has come to life. He never really saw us when he had his stridor. He didn't smile, he didn't interact. He just struggled to breath and that was all he could do. Now he smiles and plays and lives so effortlessly. He still has some hurdles to overtake in front of him and when they seem overwhelming, all I have to do is look back and see how far he has come and it never ceases to amaze me what he can do. 

Here's one of my favorite pictures from when he woke up from his sedation last year...

7 months old and 7 surgeries

Thomas has been thrown some more curve balls since his last surgery, but as with everything that gets put in his path, he finds his way over or around it. A family that I know from our spina bifida circles calls it inch stones, isn't that lovely? Not as huge as a milestone, but still a stone, still a beautiful formation of his own, no matter what the size. He never makes huge steps, there is never this A-HA, Facebook posting, camera catching moment, he just always takes little strides, in his Thomas way, towards what he needs. Then one day it's like he's there and we didn't even realize it. So his inch stones are important for us to notice and cherish and that has been a fun lesson to learn!

I enjoy all three boys (most of the time, especially when caffeinated), but parenting Thomas has been something special. No doctor could tell us what his outcome would be and when they did take a guess it always seemed to be worst case scenario. So we have parented him with no expectations, no pre-conceived notion of how his path would lay out in front of him and there has been an incredible joy in that. Which is so ironic because that is what I remember grieving the most when we received his diagnosis. He wouldn't be a typical kid that runs and plays and climbs. He might not walk. He might have learning difficulties. Communication may be hard. How am I going to parent in this new world that he is bringing. Well, as Thomas always does, he taught me. My world grew. My heart grew. Thomas has just taken us on this ride and since we don't know the route we have to just enjoy it as we go and the freedom that comes with that has made me a much better mom and person. One who is happy to take deep silent breaths with my baby boy!

FridayFunDay

Fridays are our Therapy days. We have back to back speech and OT(soon tone adding PT too). At first it seemed overwhelming to get Thomas up, fed and in the car to get down to Cincy for two therapies and keep him working hard and happy the whole time. But, as with most things Thomas, he makes it easy. Here's some highlights from our day. First was fun with toys and a mirror in Speech, then a small wait with some books and the chains on the window, then Occupational Therapy hide and seek and finally a well earned snooze on the drive home.

Clinic Day with Thomas - Our day in pictures!

Good parking spot = good day

Here we go....

Prof. Thomas at the urodynamic study

"Let's rock this, mom!"

We always have to see the fish in the waiting room

This isn't so bad, TV, snacks and an ultrasound of kidneys.

Starting to get restless with this whole ultrasound thing

More snacks make Thomas a happy boy

Ultrasound selfie

Happy guy to be getting back in the car and heading across the street to clinic

In the waiting room at Department of Developmental and Behavioral Pediatrics

Gained weight (slightly)!

CHEESE with the selfie stick!

Spina Bifida Coalition of Cincy always takes good care of us.
Goodie bag while we wait!

Relaxing while we see our clinic doctors

Poor guy, trying to get a quick snooze while waiting to head back
to the hospital for more testing.

CAT scan to check for shunt malfunction.
Thomas is not a huge fan

Trying to ration our snacks as we wait to be seen in the ER

Triage at the ER, he loves blood pressure cuffs

"I would like more crackers and I am done asking nicely!"

"I don't care that it's empty, you can't take it from me!"

Shunt tap to test for flow and pressure. Also Thomas is a bad ass, that's a needle in his head!

Well he did it again, no one can figure out our sweet little Thomas and
what is going on inside his brain. So here we go being admitted to the neuro floor!

FaceTiming with Johnny and, as usual, laughing at him!

"Why am I back in the ultrasound room and where are my snacks?"

Yup almost 8:00 pm...we got to the hospital at 8:00 am.

Waiting in the ER still, watching Duke lose and eating veggie sticks

It's been a 10 hour day at this point and this kid is still smiling, even though it was a LOOOOONG
day, I got to spend some great 1 on 1 time with him and it was fabulous to just BE with him.

Spiked a fever while we were waiting and just wanted to cuddle.

Fell asleep in the ER waiting for our orders. I LOOOVE
how he slept with his hand on my leg. I'm still here, kiddo!

Quiet hospital concourse after hours

"I get to have pudding...really??!!"

Watching Cars

So thankful he can sleep anywhere

A boy's gotta eat

Got the discharge orders, lets go home!

It was a crazy day. At clinic they felt some fluid on his shunt valve that no one could explain and we weren't sure it was old or new, so we were sent back to the hospital for testing and eventually admitted for observation and further study. After some tests and a few days, he was discharged and everything is fine! I enjoyed my time with him and I think we did a great job of making the best of what could have been a stressful and hectic few days. So grateful for our fabulous family and friends back home to help hold down the fort with everything!!

He's pretty cool!

Thomas is getting an MRI today of his brain and total spine. This is just a follow up from all the activity that has happened in the past two months, but it is also to keep an eye on the cystic structure in his brain since it has increased in size recently. We are hoping for an 'all-clear' prognosis and looking forward to a small break in hospital time. This kid takes these possible stressful situations and makes them so much easier on his mommy. As we were waiting for the doctor to come in, the nurse was doing vitals and he just breezes through it all. Blood pressure, he thinks it's hilarious. Temperature taking, equally funny. Listening to him breathe, almost as funny as his big brother jumping up and down. Looking for a good place for an IV poke, fascinating! He is hungry and tired, but he is so laid back and care free that I feel guilty for my grumpy pre-coffee demeanor (guilty enough that I walk, rather than aggressively jog, to get coffee once they take him back). He's just an awesome kid and that is really the only point of this post. I am nuts about him and think the world should be also!!! 

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

Add caption

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!