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....

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!! 

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!!

Just Wait (part 2)

Just wait. Those two little words that most moms of little kids hate to hear. But, if I could, I would use those words to speak to diagnosis day Sarah....

Dear diagnosis day Sarah,

I know you are grieving about the baby you feel you lost, but JUST WAIT this kid is going to make you a better mom and a better version of yourself. Even though it will still be rough at times, you will learn to celebrate in all that Thomas CAN do and not to be so focused on what he might not be able to do. His victories, which may seem small to others, will be worthy of a parade in your head. You will beam with pride at the little badass that he is.

I know you are worried how you and John will navigate this scary path in front of you and you know that special needs parenting is very rocky terrain that many struggle through and sometimes don't make it, but JUST WAIT! You have never had a doubt that he is the man for you, but you will come to find that he is more incredible than you thought. Later tonight, you will pack up your boys and go for a drive to get out of the house and Johnny will tell David a joke in the backseat which will lead to them cracking up with their amazingly innocent and full blown little kid joy and John will look at you and say, "no matter what happens, we will still have this and we will always all be able to laugh together, this won't change!" and for the first time all day, you will be able to breath. You will be at a level II ultrasound in a about a week and while the two of you are waiting in the room and you begin to lose it once again, he will be the calm, level-headed guy that he is and point out that even in a worse case scenario, we are still getting a new baby and we won't love him any less because maybe he can't walk or maybe he will be developmentally behind and you will breath once again and know that everything is going to be ok.

I know you are concerned about how this will affect Johnny and David, but JUST WAIT those two kids will amaze you. Johnny will immediately love and want to protect his little brother. He will proudly say to strangers that baby Thomas has a boo boo on his back and the doctors are helping him. He will take his favorite stuffed friend, Colonel Quack, and pretend to cath him, just like we cath baby Thomas. He will ask to hold baby Thomas so he can help to make him smile. He will tell you when he doesn't think baby Thomas is feeling well and that we should take him to the hospital so they can help. David will ask to talk to Thomas on the phone and say that he wishes he could come home soon. They will both be incredibly flexible when schedules get changed and they have to stay with grandparents.

You think your family is the bees knees now, JUST WAIT! Your entire family will step up. When you tell them the news of Thomas's spinda bifida, they will cry with you. They will immediately start to think of how they can help or what they can do. This diagnosis is part of them as well and they will own it right along with you. They will help babysit the other boys at the drop of a hat, they will decorate hospital rooms, they will send loving thoughts and drive to Cincinnati just to make sure you can get out of a hospital room for 10 minutes, they will make food, they will literally do ANYthing you need, even if you don't ask. They will teach you what it means to have a village and they will love you through this.

You already trust your friends immensely with your heart (because they are flipping awesome) but you are concerned that this will alienate you from them, but JUST WAIT, they will become Thomas's biggest cheerleaders and supporters. They will be an ear for you when you need it and they will be happy to not discuss it when you don't. They will change an annual trip that you all love to come be by your side when you need it most. They will pack up their kids and drive to just have lunch with you and offer a smile. Friends you haven't had much contact with in years, will come out of the woodwork to offer support and prayers or share knowledge that they may have in an area that Thomas may need. Even friends of friends, that you don't know very well, will make you food and just drop it by your house. Strangers will pick up on Thomas's story and find ways to help. Your faith in people will be resoundingly restored and it will be such a cathartic process to experience what it is like to be a small part of a much bigger whole of humanity.

You don't understand much about spina bifida, but JUST WAIT! You will become an expert on all things Thomas. You will be able to speak with the doctors and medical professionals about what options you would like to explore, you will be able to assertively advocate for him when you don't feel a course of action is in his best interest. You will soon go from being a question asker on the spina bifida forums and groups, to a question answerer. 

So, you see, diagnosis day Sarah, if all this will happen in just a year from where you are now, can you even imagine what will continue to happen.....JUST WAIT!

One week down...

***NOTE: This is posted out of order. This one was originally written before Chugging Along.***

Not much to report from Mr. Thomas. He's been cruising along on his morphine and versed. Other than those first two days, it has been pretty quiet. We are one week into his two weeks of intubation. He is still somewhat coherent though. He ever-so-slightly reacts to touch and our voices, but today he was awake for about 20 minutes and eyes open and blinking and looking at me. It was soothing to see his big blues again, I miss his little smile and his big eyes looking back at me. It seems odd to miss him when he is right here with me, but until he SEES you, you don't feel like he is here. So it was an incredible feeling to have him see me today.

He gets his mouth cleaned every 4 hours and he enjoyed it today, he sucked on the toothbrush like it was his pacifier. 

He was also drooling quite a bit today, which probably means that his top tooth is coming through. It was so close to the surface last week before surgery. I can't get a good enough look at his top gums because the breathing tube is in the way. Just another reason to be excited for the tube to come out and to see his first pearly whites!! 

Ditching the stridor (hopefully)

So today is the day! They have moved the surgery to today. Hopefully last night was his final night as our little wheezie. In true Thomas fashion, he had a spectacular night. He was actually silent and breathing quite well...nothing like a little second guessing to make a surgery day start out right! They are doing an anterior/posterior cricoid split. Basically they are cutting the cartilage ring in his throat (the cricoid) in the front and the back then placing a breathing tube in to splint the ring and let it heal around the tube with a larger diameter to increase the size of his airway. As far as procedures go, it's relatively simple, they don't make any outward incisions, it's all done arthroscopically. The difficult part for this will be the recovery. He will need to remain intubated (with breathing tube in) for probably two weeks. During this time he will be heavily sedated, not really what you wish for your 7 month old. After the intubation is over, he will probably remain in the hospital for another week and a half recovering and being monitored. When it is all said and done, breathing should come much easier to him and his energy can go towards a more fruitful endeavor, like laughing or smiling. It's been a strange roller coaster of emotions to get here. We want the surgery, but don't. We, of course, want him to breath without difficulty, but don't like to wish a surgery on him, especially one with so much anesthesia. When they called yesterday to tell us that they were adding him on for today my heart leapt, both from happiness and trepidation. I haven't been able to separate the two ever since. It is an exciting time and a nerve wracking preparation. There is no experience that I have to compare these swirled up emotions with. To literally be excited and scared and anxious and hopeful and antsy and hesitant, is quite surreal. Unfortunately, there is no guarantee this will work and he may still need further intervention, but it's worth a shot. Will post here as often as I can to update on his progress.