Finding both sides

I recently received an email from a mom who had to say goodbye to her beautiful daughter far too soon. Many things struck me about this email. First and foremost, the fact that during what was, I can only begin to imagine, an extremely difficult time in her life, she reached out to see how Thomas was doing, is incredible. She shared with me the struggles of being a special needs mom and the obscene amount of worrying that goes into your everyday life, but most importantly, she shared with me that she was able to celebrate as well. It took her a year to be able to realize that everyday she got to spend with her daughter was a celebration. This hit extremely close to home and as I thought more about it, it became quite upsetting that I wasn't enjoying and celebrating Thomas. Little babies are meant to be adored and squeezed and gushed over. I have never been great with the gushing thing, but I do love babies (well at least since we started having them, before that I wasn't sure about them and they weren't so sure about me, but it's water under the bridge now and we are all good).  I do love Thomas, more than I can even begin to put into words, but I haven't really just sat and enjoyed him, just held him and rocked him and listened to his little baby snore or smelled that sweet smell of rotten milk in his rolls. Our moments have been consumed by fear and worry. By planning and worrying about not being able to plan. By focusing on everything that he won't be able to do and what he will miss out on. By analyzing every sound he makes and trying to decide if it is normal or if I should be calling someone. By always stretching him and making him work on his PT exercises. Even all these blog posts are about hospital visits or sickness. Never just BEING with him and letting him BE with me. This is a mistake and I am missing out on HIM. I am so worried about him that I don't see him. So I have made a conscious decision to just be with him when I have those little stolen moments of just Thomas and I. You know what I have found, he's awesome. He smiles when he hears my voice and it's that heart melting little toothless baby smile that starts in their eyes and glows over their whole face, he loves massages, he loves laying on his side and when you squeeze his wrists while holding his hands. Although we aren't sure what vision he has, he is always scanning the room, he looks around with the funniest little expression of curiosity. He smiles when his brothers come over to talk to him, but he waits until they walk away to give the smile, I like to think he doesn't want them to know how happy he is that they were paying attention to him, you know, playing the hard to get game, I can get on board with this kid! His lips are beautiful, even when he is crying, they have the perfect shape. He is almost 5 months old and I have allowed myself to miss too much of him becoming him.  He deserves to be celebrated and I wasn't doing my job. I am realistic and I know that I will always still worry, but this mom gave me such a gift to make sure I find the celebration too. Give the worrying about what will happen to him and what challenges he will face a break sometimes and celebrate the kid that he is RIGHT NOW because, just like those other two little adorable weirdos in my house, he is going to grow too fast and I won't be able to squeeze his wrists whenever I want.

Where in the world is Thomas

I will give you one hint...you don't need a hint. We are back in the hospital. His stridor had increased in both frequency and volume and he had a fever and was very listless (I was told to be very picky when using the word lethargic). So we drove to the ER in Cincy early this morning. His oxygen level was pretty low, 80's, so they put him on oxygen right away and eventually moved us up to the PICU where he is on heliox. It is a futuristic looking machine. 

But it does wonderful things for Thomas's breathing. He is silently sitting here awake and happy, which is rare, if not unheard of. 

He also loves Super Tom on his head like that, so really it is a bad experiment. Is it the heliox or is it Super Tom (THANKS RATHJENS!). Doctors may never know...

They aren't sure what is wrong with him, so we are going through a process of elimination trying to figure it out. Chest x-rays, airway x-rays - on a separate note I am excited to see what super power he will end up with from all this radiation - ENT scope, steroids, etc. In the process of writing this, they have decided it is a bad case of croup. So we just have to support him through it with help breathing on the future machine and possible breathing treatments. Not awful news. Unfortunately though, when they were telling me about what they saw on the scope, they mentioned that he still has vocal cord paresis. We were hoping that he would regain use of those vocal cords after the decompression surgery. Which is disappointing, but not a complete surprise. It just means that later down the road we will have to a procedure of some sort to help him open his vocal cords all the way. For now we wait and hang out in the hospital and let the croup run it's course...with our music on!

Visiting old friends for the holiday

Last Thursday, the 20th, we came to Cincinnati for our neurosurgery follow up. It had been a week since discharge and unfortunately, Thomas had contracted some virus from his older brothers. Our primary care doctor had confirmed the previous night that it was RSV, a well known but very hostile little bug that wreaks havoc on the repiratory system. Since little Thomas is already immune compromised, it was hitting him especially hard. At the neuro apt, they weren't comfortable with sending us home with the way he was breathing so they sent us down to the Emergency Department. This was our third ED visit in less than 30 days, so suffice it to say, we are pretty familiar with everyone down there. They call us by name and comment on how big he is getting. They immediately notice his increased work of breathing and are concerned about his oxygen levels. Long story short, they admit us to the PICU. I am grateful to have him in a place where he is safe and monitored for when things go wrong, but I also dread being admitted. I have probably touched on this before, it is so strange to simultaneously hate and love a place. It turned out he did get worse over night and into the next day. He was put on high flow oxygen for a while and had to be suctioned out hourly, but he battled through like the little warrior he is and we were discharged Sunday the 23rd. Once again, it was glorious to be home. If there is a pretty significant silver lining from all of the hospital trips it is that I really do just appreciate being home with my family. Even just sitting in the same room while the two other boys wrestle each other, makes me smile and soak it all in and just be thankful. Hopefully Thomas will feel the same way one day! 

Home we go

Relentless pursuit of health

Today Thomas had his FEES, where they let me breast feed him while they put a camera tube up his nose and threaded it down his throat. They were trying to see if he was aspirating during breast feeding, which is why we have been doing the feeding tube up to this point. They roll in this big machine that looks like a robot with a monitor for a head and all kinds of wires for arms. The doctor comes in behind the machine along with a tech and two speech pathologists and then about 9 other people. Mind you, we are in a hospital room, not known for their size, with a crib, a pullout couch - that is still pulled out into a bed with sheets and pillows all strewn about - a rocking chair that I am sitting in and a desk chair that I have my feet on while I am holding Thomas. The speech pathologist introduces the doctors and then mentions that these other people are from Israel and are learning about this aspect of medicine and they would like to see a FEES in real time if that's ok with me. I am by no means a clean person, ask John, or better yet just come to our house. I don't straighten regularly, I can blame this on having kids, but that would be a lie, I have always been that way. Clutter doesn't bother me. But for some reason when all these people walked into our room I became very aware of the clutter and lack of organization in the room, like I should be picking up for them...in the hospital...with a sleeping little baby in my lap. It was really odd that this was my first thought seeing as I was about to have my breast out feeding Thomas in front of them. I think when it comes to this medical stuff, I really want to understand EVERYthing about what is happening. Most of the time, everyone is very accommodating and will answer any and all of my questions ad nauseam, but for some reason I was thinking if they see what a slob I am, they may not give me the respect to explain or even listen to my concerns...dumb, I know, but that's what crossed my brain, but I had no problem whipping out the milk makers and feeding him in front of strangers who are staring intently and whispering. Besides that, the study was awesome. He is fine at the breast and doesn't show any aspirating towards his airway. In fact, the doctor used the words "perfectly normal" and that is the first time that I have thought of that phrase as a compliment and the first time it has been used in respect to Thomas. So we are free to breastfeed again and lose the feeding tube. Great news. 

During the assessment this morning, from the doctors rounding, they noticed some asymmetry in his eyes and possible cloudiness in the left eye. This could be a sign of a few things, so they called in ophthalmology, who dilated his eyes to take peek at the backs of them. The pressure was increased in both eyes and the left eye has an enlarged cornea, they think this is consistent with glaucoma. The plan for this is to do drops in both eyes to keep the pressure under control and relax it, but to monitor very closely. If it is, in fact, glaucoma, he will need surgery to preserve his vision relatively soon. Poor kid just can't catch a break. We seem to get one thing figured out and tesolved and them another one pops up. 

With all these hospital stays, we are definitely making friends though. The ER docs know us by name and we have a few favorite nurses on the neuro floor. The speech pathologist, who got our FEES moved to today rather than the 24th, changed around her schedule so she could be the one here today with us. The people from the MM clinic have come to see us regularly and the Spina Bifida Coalition of Cincinnati has sent us regular meal cards so we can order food to our room at no charge, plus they have us tickets to Disney on Ice here in Cincy so we could take the two older boys!! In our relentless pursuit of health, we are continually expanding Thomas's already amazing village helping him through this journey!!

Coming home - written 11/10

This is our happy to be going home face....

We weren't able to get the FEES study scheduled until November 24th, so we opted to go home rather than wait in the hospital for 2 weeks. We have to feed through a preemie nipple and feeding tube until then and Thomas is thrilled with this news...

Second wind

Well home was nice...for a night!! 

We got discharged Monday night with a feeding tube to protect his lungs from aspirating. He is allowed to eat for 20 minutes on a preemie nipple from a bottle, then we do the rest of his feed through the feeding tube. Since the NG tube is something new, we had a home health visit from a nurse. During the visit, she took his blood pressure and it was high (136/92). Yes, this is high, but that was the same pressure that they discharged us with the day before. So taking our cue from the docs who discharged us, I was not worried. Unfortunately, everyone else was. The home nurse called around and it turned out that they should not have discharged us with that high blood pressure....that might possibly be my worst fear ever, sending us home when it is unsafe. The doctor who discharged us called and said that we should come down immediately to the ER. He also let me know that he had thought of dealing with the blood pressure before discharging us, but had decided to wait. Thomas is on a steroid medicine that is infamous for raising blood pressure so they were thinking once the steroids were done and cleared his system his blood pressure would normalize. Unfortunately, the kidney doctors were not consulted on this decision because they disagreed and wanted to get a blood panel run to see if kidneys were ok. So back to the hospital we went. Went through our ER process and got another CT scan and x-Ray to check shunt and Chiari - this kid better get a super power from all the radiation he is getting - all images were normal so that was reassuring that at least this visit wouldn't end with another surgery. They took blood and sent it out to nephrology to check and decided they wanted to admit us while everyone tries to figure out what is up with his blood pressure....so back we went to good old A 7 on the neuro floor, but this time we have a recently updated room - living in luxury up here! 

Blood work all came back normal for his kidneys, which is wonderful! They think the blood pressure is from the steroids causing him to retain water, so they put him on a diuretic to help flush it all out and hopefully manage blood pressure until the steroids are out of his system. We have to stay in the hospital until they see the blood pressure trending the right direction, then we can go home on the meds and monitor from home. 

The other good news is the FEES got moved to tomorrow (Thursday) so we will get to see if he is aspirating when breast fed. Originally they told us it would be November 24. If he is not aspirating, then we can get rid of the feeding tube and just breastfeed again!!! Also tomorrow, he gets his stitches out from his shunt site and his decompression site. 

The lesson to take from this trip is if we hear ANYone have a concern about any aspect of Thomas, we need to make sure the right people are consulted before we hit the parking lot. It was wonderful to go home and see the other boys and sleep in our own beds for a night, but it was a pretty defeated feeling coming back and getting admitted again in less than 24 hours. Of course we will do anything for Thomas and if that means being here again, then let's do it, but this time lets talk to all the right people before we leave. 

Catching up

We are still in the hospital. He is healing well and all the incisions look good. We were moved off the PICU floor and are now residing on the Neuro floor. It's a little more laid back up here, we can eat and drink in the room and the TV is much bigger. We are released as far as neurosurgery is concerned. Unfortunately, the pediatrician here is concerned with the results of his swallow study. The study showed that he does well with thickened liquids, but on a thin liquid he was showing some penetration - meaning the liquid went towards his airway. This concerns them because breast milk is a thin liquid and he could be at risk for aspirating it into his lungs. Chronic aspirating can lead to serious respitory issues later in life and cause pnemonia now. To ensure he is not aspirating breast milk, we have to do a FEES, which basically means they put that camera tube back up his nose and watch through it while I feed him to see where the liquid goes. If he is aspirating, we need to change how we feed him. Most likely we would do a feeding tube while we give his vocal cords time to heal and hopefully he regains the ability to use his vocal cords, which would then protect his airway and keep him from aspirating and we could lose the feeding tube. When we first heard 'feeding tube' it was quite daunting to think of and I was not liking it, but then I remembered thinking the same thing about cathing him and now that is second nature. So if it gets us home safely, bring it on. We are still waiting to see when they can schedule the FEES. Will update when I can. 

Love

"Still far away from where I belong, but it's always darkest before the dawn..."

We have been here for 10 days now, which is almost as long as our initial NICU stay, but this one is much harder. Maybe since the first one was expected and we really didn't run into any surprises, it was easier to endure, but whatever it is..this one is getting to me. I had been doing well and keeping my head up, always trying to learn as much as I can about everything that is happening, but a day or two ago, I hit my wall. I fell into the dark place and started the 'this is so unfair' thoughts and all I could see was how much I miss my boys and how poor Thomas just can't catch a break and it just seemed like one thing after another. Once you let yourself start down that nothing-is-fair road, it spirals out of control quickly, especially when sleep deprived and a little lonely. I was jealous of everyone back home who did get to spend time with my boys and be part of their everyday lives. Hearing stories or seeing pictures of all I was missing at home, just made it worse. I missed Halloween and this was the first year John went trick or treating like a big kid, I won't get that back. I was supposed to help in his class for their party and get to see him interact with all his friends, broke my heart to miss that! Being on Facebook and seeing healthy babies or pregnancies, just produced sadness that my poor baby is in a hospital bed with stitches and wires all over him. By no means am I writing this for pity, I just want to get it out there so I can remember the feeling and be better prepared next time it starts to happen. After all, this blog started as a journal for Thomas' journey and this is a very real part of it. I let myself get focused on all the negative, which is unlike me, but that just speaks to what an intense situation this is. I hate this place! But then yesterday as I was getting on the elevator to come back up to Thomas' room after getting to see my family for a quick visit in the cafeteria, the light clicked back on. I was crying, as I do when anyone comes to visit then has to leave, and the man in the elevator with me was on the phone. He had on a parent badge and was also heading to the ICU. He was talking about an EKG reading for, what I am assuming is, his daughter, I should also interject here that I am a shameless eavesdropper - if you don't want me to hear it don't say it in the same city as me -her EKG was irregular after some sort of sudden trauma. He was pacing while he was talking. There was something in his voice - concern, anxiety, helplessness, pain -that struck a chord with me. You could hear the love, it was initially masked by all those other emotions, but when I really listened, it was love. Then as I stepped off the elevator to make that soul crushing walk down the dimly lit hospital hall that we have been residing in for the last 10 days, I saw a couple in front of me walk out of a room, take a deep breath and start to walk towards the parent lounge, as they walked they both simultaneously reached out their hands and continued to walk, hand in hand, down the hall. Again, there was the love. This was not a romantic moment in their life, I am assuming, it was just love, most likely in a moment of need. Whatever is going on with the kid they have in that room, they are loving him/her through it together and that is beautiful. Yes, this place can be ugly and hateful and take you to dark places if you let it, but if you look closer, it's filled with love, lots and lots of love. Sometimes it is filled with love masquerading as sadness or anger, but at the base of it, is still love. Once I found the love, this became easier. It's hard to miss my other boys, but it's because I love them and that is wonderful, they are surrounded by so much love back home and that is a blessing beyond belief. It's hard to watch Thomas have to go through all of this, but that's because I love him. It's all so hard because we are doing it right. It's hard because it's love and love can be hard, and sad, or happy and joyful, or even angry and frustrating, but at the end of the day it's love, you just have to find it. So next time I get a little chippy with a doctor for not handling something the way that I think is best for Thomas, I will make sure to follow it up with, "it's only because I love you that I am mad at you right now..." and I am sure they will understand. 

My eyes must have deceived me....

Last night was a rough night for Mr. Thomas. His pain sometimes adds up on him and he has a rough stretch that we have trouble pulling him out of. He is on some oral pain medicine, but when we feel like his pain is really bad he can get some quick medicine through IV. Last night when we thought his pain was pretty bad we tried to give some fentanyl so he could sleep, but he screamed even louder when the medicine came through the IV. The IV looked fine, but something was clearly wrong so we had to prick a new spot to give him a fresh IV because the steroids that he is on for his inflammation need to be given through IV. They have to call a Vascular Access team to place the IV since his little veins are pretty tough to find. So we have to wait for them to get there, which is tough with a screaming baby in the middle of the night whom you can't pick up. It seemed like it was taking forever and he was inconsolable. When they finally did arrive, they tried to place a secondary IV up higher on his arm, so they pricked him there, but it didn't work, as you can imagine he loved that process. They look at his other arm, which is where his arterial line was for surgery, but it is not right, it is turning purple and very swollen. They begin to have a conversation about what they should do. At this point I am beyond my last straw - it is the middle of night and we have now been at the hospital for a week so we are both sleep deprived and just over this whole experience - so to say my patience was done is an understatement. I was physically angry at the nurses for having to wake him up from sleeping to get his blood pressure and listen to his chest (all important things in the ICU that they have always done). I very curtly say to them that they need to just do his foot since he can't feel it and then be done with it! They proceed to prep the top of his left foot, this is another of those moments that the spina bifida is slightly helpful since we can get IV's and blood draws from his feet without hurting him. They are all prepped and ready to prick him, I finally relax knowing it will be over soon and he won't feel it so I don't need to hold him down as tightly. The nurse says - like the always do - "Okay buddy, here it comes" I think to myself "I just told you he can't feel that, why are you acting like he can".....as soon as they push the needle in, he screams....WHAT??!! Nothing else changed. He screamed in pain and pulled his foot back away from them....again...WHAT!!?? That wasn't supposed to happen!! I ask them if they think he felt that and they said it certainly looked like he did. I jump up out of my seat and yell "AWESOME" which probably came across wrong to most people in the room....We have done that prick before and he has never even flinched, but he felt that one! I immediately started to tear up...how is that possible? My mind starts racing - did I just imagine that since I was so upset and tired and needed something right now to lift me up? Could it have been a coincidence...don't get so excited, it's just a little thing. Wait...no, be excited, it's ok to celebrate this. We needed a win, a pick-up for this point in our journey and Thomas (and his wonderful doctors that did the decompression surgery) delivered it! I still can't really believe it and want to test it some more, but I think they discourage parents from poking their kids with needles in the hospital, probably out of the hospital too.

We are waiting for ENT to come and scope him today and look to see how his vocal cords are looking after surgery, after that we need to go get an X-Ray and see how the bones are all looking in his spine. If both of those things go well, we can take off the collar and most likely we will get moved to the Neuro floor and off the ICU floor, which is good since it is a step towards discharge. It will be hard for anything to top that moment of his foot feeling the needle prick today, but will update with news as we get it!

PICU

Thomas is hanging in there. We are still in the Pediatric Intensive Care Unit. He is definitely in some very serious pain and that is so awful to see. All the surgeries are, of course, tough on us, but really this is the toughest part for us. Just having him in pain and unable to get comfortable or eat and sleep, just rips your heart apart. He is on pain meds, but they want to keep dialing them down because we can't leave the ICU if he is on these heavy drugs. The really good pain meds leave him in this state of sedation and we are unable to see if he is improving and can go about his normal tasks of eating, breathing, pooping and sleeping. So as the meds get turned down and he can feel the pain more, the days and nights get harder. There is the obvious pain of the incision site, but also the neck muscles that were cut through are pretty mad and are spasiming at times, plus he is in the immobilizing C collar. Add that up with one 3 month old and you don't get a very happy camper. I always try to find a positive out of all these obstacles we hit and the only one I can think of right now is that I am thankful he is so little. Although he is so little and fragile and it crushes my soul to see him like this, I can't imagine if he were a toddler who could talk and move and understand a little more. When Thomas goes for his surgeries, we walk with the bed to the entrance of the OR hallway and then we have to go to the waiting room and they wheel him off in a different direction. I cry everytime at this junction and I kiss him and wish him luck as well as the medical staff that takes him, but he has no idea what is going in. What about when he is older and cries out at that part? What if he holds onto me and begs me not to leave him...this is not like the first day of school where I can fake it and walk away with a stiff upper lip and a small dose of tough love and then cry in the car, I will absolutely lose it if he loses it. Also, if he were older and in pain and able to tell us of his pain or his hunger or if he had position restrictions that he didn't understand and wouldn't abide by....that all sounds more difficult. So I am thankful that he is so little and won't have to endure the memory of this.  Also I am thankful that this experience has taught me what to expect, so when he is older and we have to do this, we can be prepared with games, toys, visitors, food....whatever it takes. When we were trying to pass the time before surgery as he was NPO for 10 hours (unable to take anything by mouth) I was blaring some music on my phone and dancing around and singing with him - yes we are the weird ones in the PICU, I am pretty sure no one wants the room beside us - I played the songs that remind me of Thomas and his journey and I found myself thinking this could be our tradition. When we are stuck in the hospital, we can have certain songs that we sing and dance to. The more inspirational the better - I am open to any ideas people may have as we often have A LOT of time to pass so the more songs the better. Right now my go to ones are 'Coming Home' by Skylar Grey, 'Wonder' by Natalie Merchant, 'Count on Me' Bruno Mars, 'On Top of the World' Imagine Dragons, 'Seasons of Love' Rent, 'You'll be in my Heart' Phil Collins, 'Ain't no Mountain High Enough' Marvin Gaye, 'I'm Already Home' and 'Rockstar' by Great Big World (Thanks, Dawn!). I also have decided to really learn how to play guitar so I can bring it with us in these times and we can jam, I bet there are studies somewhere on the therapeutic benefits of music. This post really wandered all over the place, I guess that is what happens when you are stuck in a hospital room and your thoughts just jump from one thing to another! 

Breaking it down

So the decompression is done, it was 7 hours (supposed to be 4!). He do really well. I will try to explain the procedure as best I can....

The reason for the procedure is that he has a Chiari Malformation. This means that his cerebellum is not where it is supposed to be. It has been pulled (or pushed, we think in Thomas'case) into the actual foramen magnum, which is the funnel like opening at the top of the spinal cord. This space is not big enough to hold the cerebellum and the nerves in the spinal cord and pressure is placed on everything, affecting function. In Thomas' case, we noticed a change in his breathing due to bi-lateral vocal cord paresis (basically he couldn't control his vocal cords because of the pressure from his Chiari). His breathing became stridorous and that is what lead us back to the hospital. If he was older other symptoms we would have noticed would have been trouble with fine motor coordination, balance, headaches and an overactice gag reflux. Most cases of Chiari are not symptomatic, but Thomas is in the lucky minority. Untreated this can be life threatening. What the neurosurgeon did was called a posterior fossa decompression surgery. He opened up the back of Thomas' head and removed a half moon shaped bone from the base of his skull. Once that is removed he cut through the dura to give the hindbrain room. He then decided that more room was needed so he went down to the vertebrate on the spine and cut into the top two vertebrate, removing the boney arch at the back of the top two vertebrate (C1 and C2), this is called a laminectomy. After this he also wanted to relieve a little more pressure, but didn't want to cut any more vertebrate as cutting into two of them will already give Thomas an uphill battle for head control and stability later. So what he did was cut C3, C4, and C5 and lift them up to cut the dura underneath. He then patched the dura back together to make it slightly larger and then laid the bones back down and sew them back together (little dude bones are so cartilaginous that a needle can penetrate them). This is called an osteoplastic laminoplasty. When he did this, the neuro-monitors they had on Thomas showed over a 100% improvement on some of their readings. This means in some areas he may have gained function that he didn't have before, which is incredible news. We won't really know the full effects of the surgery for some time, but as it sits right now it went well and he has to battle the road to recovery. The hardest part of that battle is managing the pain of a three month old that is not being fed....so is he hungry or is he uncomfortable from the collar or is he in pain? It's a guessing game. But we are hopefully in the home stretch of this match of Thomas vs. spina bifida and although it isn't a TKO, I think the decision is going to go overwhelmingly in favor of Thomas

Decompression surgery

They took him for surgery at 1:30 this afternoon. We are in the waiting room still waiting and it is 6:20. They sent an update that it is going smoothly. This is longer than they said to expect so our minds can't help but wander that unexpected variables have popped up that they are dealing with....

2 surgeries down...1 to go!

Calm between the storms

Today has been nice and quiet. He did great on his shunt surgery yesterday and the scan this morning looks stable. He still has some stridor, but nothing like what it was and he was extubated ( breathing tube removed) so we can hear him again. No commotion in our room today, just lil Thomas and I hanging out. We are on the schedule for a decompression surgery on Monday so we are just going to enjoy some quiet cuddle time before another flurry of activity Monday and then a little rougher of a recovery after that surgery. I would have brought his superman costume if I had known we would be here for Halloween. Never has a costume been more fitting....

Silence is deafening

We have been living with the stridor for a few weeks now, so to have him be silent is eerie, at best. With his breathing tube in, he can't even cry. He literally does not make a sound. When he is mad he still thrashes and throws his hands around and opens his mouth wide as if to yell, but only silence comes out. He turns red and it is so obvious he is agitated, but not a peep. The dichotomy of yesterday at home and today in the hospital is striking. We often couldn't hold a conversation if Thomas was in the room because the stridor was so loud and now....silence, literally! It is such an alarming experience to go through all of this with such a young little babe. With the other two boys, I wanted them to be different and unique and for my stories and experiences with them to be so special and personal that it was like our own mark on the world, brand new! With Thomas, I crave similarity. I am constantly searching Evil Mr. Google for someone, anyone, to have had the same trouble and taken the same path that Thomas is taking. We need company on this, not because we are miserable, but because we are unsure. I need path finders in front of us to say where they went right and left and show us what map to use. When I come across some of these people, I want to soak them in and have their strength and knowledge ooze into us. We could use strength as we send him off for his second shunt revision in 24 hours....good luck little boy!!! Come back screaming like hell, please

Re-shunt

The shunt revision from last night did not take. The catheter is not in an ideal position when they looked at it on CT scan today.  So they are going to go back in and re-do the revision. Less than 24 hours and surgery #2.....hopefully they can get the breathing tube out in the OR safely and he can be evaluated over the weekend. They will be watching for signs that his breathing has not improved and that will lead us to a decompression surgery on Monday. A much more complicated surgery that might not fix the stridor but will keep it from getting worse and also decrease the pressure being put on his nerves. 

He's out

He is out of surgery. It was the proximal catheter that had moved out of position. They replaced it and saw that the new one had good flow. The Doc is concerned about the Chiari though. He thinks that pressure is being put on the nerves at the base of the brainstem and that is what is causing the stridor....if that is the case then we will have another surgery this weekend to decompress. Basically remove a bone from his spine to give the brainstem some room. He doesn't want to do this since Thomas is so young, so we are going to watch him tomorrow to see if he can breath around the tube on his own and if he still has trouble on the inhale. That will determine if we need to do anything else. He is still sedated and we are in the ICU. 

Shunt hit the fan

Back at the hospital. Thomas is in surgery to repair a shunt malfunction. We came back in because his stridor had gotten worse. We went to the ER and it became what was the most terrifying few minutes of my life. We checked into the ER and they took us back to triage. The nurse was asking me the basic questions about Thomas while she was hooking him up to the monitors and then an alarm went off for his oxygen levels and she told me to get my stuff and she called for the emergency response team as we were hustled into another room. I spoke of the emergency response team in one of our NICU posts. It is crazy. 30 people came swarming from out of nowhere and started hooking up wires to him and manipulating him, feeling his lungs and throat. One doctor was yelling instructions and another asked if I was mom and told me to sign this paper. They grabbed a breathing thing-a-majig (scientific name) and it looked like steam was coming from it. They held it over his mouth. All while he is screaming and I can barely get glances of him between shoulders that are surrounding his bed. I hear someone explaining to me that his saturation level was 90 (out of 100) and they were giving him some medicine to relax the airway to see if that would help. A voice is still asking me questions...does he have normal temp? How much does he weigh? How long has he had the stridor? Does he have Chiari? They are finally satisfied with how he is doing and he is stable enough to get a chest and airway x-Ray. So we are whisked off to the X-Ray room. Accompanied by an MD and still hooked up to a machine because he could de-sat again. Once the films are done we are put in an ER room and this is the first chance I have had to sit and believe what just happened....this is serious. But before I can even call John and fill him in, a neurosurgeon comes in and starts asking questions. Has Thomas' temperament changed? Are his eyes sunsetting? Has head circ changed? No, nothing is out of the ordinary as far as his temperament. He starts looking at Thomas and examining him. Everything looks normal, but he doesn't flinch when the neuro puts a hand to his eyes....how have I not noticed this? I knew he wasn't focusing on us yet, but we expected that to be delayed, but I hadn't noticed the no flinch. You could tell that it struck the surgeon, he kept going back to it and trying again and my thoughts raced....he should be flinching....does he flinch at home....it's too bright in here....does that matter....should I have noticed this....has damage been occurring inside his brain that I could have prevented....then an ENT comes in. She scopes him and sees what we already knew:partial paralysis of the vocal cords. She doesn't know what is causing it but wants to keep him overnight for observation if he is cleared by neuro. We just did that, it's called a sleep study, why do I need to stay again?

Next thing I know we are off to get pictures of the shunt taken. Now Thomas is hungry and not shy to let us know. Now he's inconsolable...but I can't feed him just in case it's a shunt failure and he needs to go to surgery. After the shunt pics are taken we are back in our own room. And now he's really mad at me for not feeding him and there is no doctor in sight. LOOK AT THE FILMS!!! Everything is fine, just like last time...let me feed him. Well turns out I am the worst mom ever. Everything is not fine. His vents have increased and we need to do surgery tonight. Shunt repair surgery is pretty straightforward and they do it often here, but another brain surgery on a 3 month old is not ideal. Plus he has some croup that showed up on the x-Ray, so when they put the breathing tube in for surgery, they most likely won't be able to take it out in the OR. Which means they have to keep him sedated until the inflammation goes down. This could take days.....just hope for the best. He is in surgery now, will know more in two hours or so! They think it was the proximal catheter of his shunt that came out of place and that is causing the malfunction. It isn't completely in the ventrical and not draining effectively. If it is truly that simple that will be great!

Awareness

Thomas' sleep study has been scheduled for October 20. We are hoping to get some answers from it...in the meantime just gathering as much information as possible on vocal chords and the surgeries!!

Latest with stridor

We had our follow up with ENT this week and unfortunately it wasn't the news we wanted to hear. The Doc heard the stridor and scoped Thomas and he saw the same thing that they saw two weeks ago, some movement, but he had an explanation. Thomas has the muscles to actively close his vocal chords (adduction) which is what you need to speak and make sounds, but he is not able to actively open his chords (abduction), which is what you need to breath. His chords only open about 30% of what they are supposed to. This is concerning because he may not be getting enough air. Multiple times they asked me if he turns blue or gasps or is in pain/distress ever. I feel like I am giving the wrong answer when I say no since everyone is always so surprised by it. I have never seen him turn blue or felt concerned that he wasn't breathing, but now that I have been asked, I think back to every weird noise he makes and when he yawns and wonder if I am missing something. The next step to see how much air he is getting is to do a sleep study. We go spend the night in the hospital and he is hooked up to all the monitors and they record his vitals and activity to make sure everything is normal. They also will check for apnea. The doctor said that if all of that is stable we will just wait and see if he can develop the ability to actively open those chords or if he will need intervention. The intervention may come in the form of a tracheotomy, which is slightly disheartening. I posed this dilemma to the SB young family group that I am in and it seems it is very common and many of them have gone through it, unfortunately all with different outcomes and advice. A few got the trachs and said it helped and was scary, but it is fine now. Some chose to do decompression surgery instead and were very happy with their choice and it solved the issue of the paralyzed vocal chords without a trach. A few mentioned a different doctor at children's who is an airway doc and has helped them with this issue. So, as usual, no clear cut path, but lots of options and wait and see. My concern with wait and see is damaging his vocal chords further and possibly losing function. One family was diagnosed with stridor and told to wait and see if their little one would out grow it, but he never did and they got a second opinion eventually and had surgery, but lost one vocal chord in the process due to damage. At what point do you question doctors and at what point do you trust they know what they are doing? I hate doing unnecessary surgery, but would hate even more losing a function because we were trying to avoid surgery. Also, what surgery do you pick? The more common one that is pretty straight forward but puts a hole in his throat or the more complicated one that wouldn't have outward signs and could still fix the problem? Hopefully the sleep study will have some answers. In the meantime here is a picture of my little trooper in his best known place, the hospital!!

Awareness month

October is Spina Bifida Awareness Month. At first I felt like I needed to be wearing the yellow ribbon and changing my profile pic on FB to 'I love someone with spina bifida', but I didn't like it. I do want people to know about spina bifida and that it does exist and if someone you know (or are about to know) is diagnosed with it, it isn't the end of the world, it's just a shift in your reality, a new normal. I definitely don't wish spina bifida on anyone, but I don't like the idea of him being a cautionary tale. "Take your folic acid or THIS WILL happen to you!!". While it is important to take your vitamins and be healthy, especially if you can't get all your nutrients in, but folic acid isn't a guarantee to avoid spina bifida and it is presented like it is. Spina bifida births did decrease when folic acid was touted as important for pregnancy, but also at that time, ultrasounds came about and the knowledge on how to look for birth defects. So the number of spina bifida births did decrease, but not necessarily all due to folic acid. In a recent year, there were around 3000 cases of spina bifida diagnosed prenatallly and only 1500 births. Many families who receive the diagnosis are advised, or choose, to terminate the pregnancy. So yes, spina bifida births are down, but folic acid isn't the only reason and when it is touted as the cure, or only prevention, of spina bifida, that is false and misleading and has lead to many nights of guilt for lots of people. Yes, take your folic acid, but not to avoid spina bifida, b/c your baby may have it anyways, take the vitamins to be as healthy as you can be for you and your baby, knowing that some of it may be out of your control. The real awareness should be given to the families who receive a diagnosis and the OB doctors who don't know a lot about spina bifida and advise termination based on misinformation. I have found many people whose OB doctors said that their baby will have a significantly poor quality of life because of the spina bifida and hydrocephalus. This isn't true. Hydrocephalus with a known cause like spina bifida isn't as debilitating. The pressure can't build on the brain since the fluid is still flowing out from the opening in the back. Also the soft spot allows for some give with the extra fluid. I completely understand the mindset in that moment of finding out your baby has spina bifida, your whole world crashed, all the images you had for your future with that little baby have been stolen from you, or so you think. At that moment when you hear your baby won't be mobile (which P. S. you can't tell anything with spina bifida for certain before birth) the only thing you can think about is how you had looked forward to walks in the park and playgrounds and sports teams. You hear that they won't be able to control their bowel and bladder and you think about sleepovers and camp outs and teenagers with diapers. You are told that developmental delays are quite possible. While all of this is running through your head like a bad dream, your OB, a trusted doctor, offers the option to terminate the pregnancy. Without being political, I see the point of view and I get it and being in that position has given me a new point of view and understanding on such a complicated issue. But, I digress, awareness month...I would like people to be aware that if they receive the diagnosis, life will change. Things will be hard, but that is true of just having kids in general. We are still so new to Thomas' spina bifida journey, but I see it differently already. He's a part of our life and we do what we need to for him and with him without thinking about it, it's not like we dwell on all his differences, we learn as we go and our life is constantly morphing. It truly is an adventure and I wouldn't trade him or change him for anything in the world, because then he wouldn't be him. That is what I am aware of and not just this month. 

New normal of life with the Bif

This post is overdue...we had our first SB related scare. Thomas was having some stridor (high pitched wheezing when inhaling) that randomly started and then got worse over the course of a couple of days. I had remembered reading about stridor and how it can be linked to something common with spina bifida, so of course we googled it...how have we not learned to stop googling health related topics at this point??!! A call to the MM clinic and our pediatrician got us an appointment locally which was immediately followed by a trip to Cincy Children's ER. Our local ped didn't want to take any chances with his shunt.  We got down there and got right in a room, everyone we saw heard the stridor - which was a weird kind of relief, I wanted to be sent home b/c we were worrying over nothing, but I also wanted validation that we did the right thing by acting on it and coming to the hospital! We were sent for a CT scan to look at his airway and the ER Doc didn't seem concerned with what the imaging showed, she was thinking it was probably tracheomalacia, which is basically an exaggerated narrowing of the airway on inhalation, it can be caused by any number of things and is relatively common, but just to be sure they wanted us to be seen by the Ear, Nose and Throat docs. So they came in and scoped our little guy, they put a tube up his nose and then threaded it down his throat to see what was happening when we heard the sounds. I really wanted to look into the scope to see and I must have been making a weird face and stepping closer because they kept saying how it wasn't hurting him and how it was good that he was crying so they could see the whole situation - trying to reassure what they must have perceived to be a concerned mom. I wanted to correct them and say that I wasn't concerned about them hurting him and I wasn't nervous about his crying, I just want to play with your scope and see what it looks like in there, but I decided against it since it made me sound like an unsympathetic mom, so I just nodded and tried to look relieved that they weren't hurting him. They also didn't see anything of too much concern. With Thomas' Chiari Malformation (basically his brainstem pulled down into the spinal cord) sometimes it can put pressure on the vocal chords, paralyzing them and not allowing them to spread apart, causing stridor. If this were the case, we would be looking at a decompression surgery possibly. Obviously another surgery on this poor little man is not ideal especially a complicated one like a decompression surgery. But they didn't think they saw that, although the vocal chords did freeze up when the stridor was happening, they moved correctly when he was crying normally. This was good news and they thought that the stridor and intermittent spasiming of the vocal chords could be due to reflux, so they were planning on sending us home with reflux medicine after they checked in with the attending doc. Sometime later the ER doc comes back in and said they are going to admit us for the night. This came as a pretty big surprise since we were packing up to go home based on the last doctors that had been in our room. Apparently someone up the chain of command wasn't comfortable with an educated guess about reflux and wanted more tests run to make sure it wasn't a silent shunt failure or symptomatic Chiari. So we had another CT scan done of his whole shunt this time (shunt series imaging) and we were put on the schedule for an MRI in the morning. Usually they sedate the kids that can't be distracted by movies or music, but we were able to try it without sedation and I just fed him and swaddled up tight and hoped for the best. He will have enough done to him in his life that the less anesthesia and stuff like that we can do the better. He did great with the MRI and the images came back stable and no signs of shunt failure or pressure from the Chiari. On that note they sent us home with the offer to stay another night if we wanted him to be observed overnight....ummmm thanks but no thanks, we went home! Home with no real answers but also no concerns, so we'll take it, for now. This is what we are to expect when there is a slight health blip with our little Tom Tom, we need to rule out all the big stuff and be happy when it is just something normal like a cold or fever or fussiness. We will always have bags packed when heading to the hospital and also always have phone chargers with us (I may have had to borrow the nurse's phone charger so I could get through the night with a working phone....). Also as he gets older we will always have books, snacks and stuff to do. Lesson learned and new normal still taking shape!

First Day of Spina Bifida Class

Today was Thomas' first day of MM (myelomeningocele) clinic. This is a day where we go to Cincy and meet with every specialist that is part of our Take Care of Thomas Team. I wasn't sure what to expect going into the day, but I did know this was the start of something we will be doing regularly for a long time, which, in my head, makes it a milestone. And all milestones need a picture...

He is 10 lbs 10 oz and a far cry from that little fragile 6lb nugget that had three surgeries in his first two weeks of life. 

This is really the first spina bifida specific thing we have done. Everything else up to this point (other than the cathing that we do every day, but that has become as routine as changing a diaper so I don't count it as out of the ordinary) has been just baby stuff. So this is really the first step down our spina bifida path. 

We arrived at clinic and were waiting in the lobby area with some other families and it occurred to me, after the fact unfortunately, that that was a glimpse into our future. Monday afternoons in the building are dedicated to only spina bifida patients, so everyone we were waiting with had been on the journey we were about to start. I wish that had come to me sooner so I could have soaked that up more. It was definitely another what-was-I-so-afraid-of moment waiting to happen. The young kids were playing on the various toys in the room. The teenage patients were on their phones. It seems at every turn there is a reminder that while in fact spina bifida is going to make Thomas' life different than we had pictured, it doesn't mean it will be worse or missing some vital component. Different isn't wrong, it's just different. 

We had a very quick wait, then we were taken to our room. We were in this room for 4 hours as each specialist took their turn to come in and meet us, in some cases just to introduce themselves, since we don't need their expertise just yet. It felt as if we were meeting part of our family for the first time. These people will be involved, in a very major way, in Thomas' life for the next 20 or so years. Helping to make decisions and get to the bottom of problems. It was comforting to meet all of them and really to feel a kinship with them, knowing while this is Thomas' journey to take, he (and we) won't be alone. There will be people who know him and who are invested in him and have watched him grow and who have seen others go through it that will help us along the way. 

The physical medicine doctor was first. She really liked his movement and strength. While his hips didn't seem quite as strong as we would have liked, she sees no reason he won't be able to walk with the aid of AFOs (ankle foot orthotics).  He didn't have much flexion in either foot and that would give him balance issues, so the braces would help to support him from falling forward. I thought this was great news. Although if he needs a wheelchair that would be fine, but if this is one less challenge he has to face, that is great news. Next up was the dietician who said that his height to weight ratio was good and he was in the 85 percentile (which is higher than either John or David were). However when all is said and done, he will most likely be on the shorter side of average as far as height since that is pretty common in people with spina bifida. For this reason, we need to be very conscious of his weight. Between the possible decreased mobility and shortness, we don't want him to be too heavy that it keeps him from maximum movement and holds back milestones. 

Next up was the developmental pediatrician and he said all looks good and we should expect normal milestones as far as eye contact and recognizing our faces and smiling very soon. 

Urology was the next through the door and they are really the ones right now with the most to say. We have been cathing Thomas 4x/day and we don't get much, but we do get some, so I wasn't sure what the implications of that were. When the urology fellow went to examine him, Thomas, of course, peed on him and it was funny since he didn't recoil away or jump, he watched it and commented on the strength of stream. This is the first time I have seen someone examine the little stream of pee as it is hitting them and that was kind of comical, must be a perk of the job! He liked the strength of the stream because that means there isn't any obstacles along the urethra blocking the flow. When our Urologist came in he explained that although our numbers are low for cathing he doesn't want us to pull back on it quite yet and go to 2x/day because he wants to wait to do a urodynamics test when Thomas is 6 months of age. This test will consist of a catheter placed in the bladder and in the rectum to measure the pressures as the bladder fills. This will give us a better idea on how/if the bladder contracts. We know from the VCUG test he did at birth that his bladder was only partially emptying itself, but we don't know if it empties due to the pressure of being full or not. Also he would rather us stay cathing if there is a chance we will have to later in Thomas' life, since starting it up when a kid is older is much harder. 

Then we met the 'poop' doctor, as she calls herself, this was more of a meet and greet since as a newborn there isn't much we do for poop other than catch it in the diaper. We need to watch for constipation, but that's really about it. Later down the road she will help us with a bowel management program if we need it so he can be socially continent. 

We also met with a social worker who explained the insurance and financial side of all of this and how we can apply for various assistance programs and what to do about bills. 

And that was it for the day. It was a long day but very informative and Thomas was, of course, a champ as people poked and prodded at him all day long. We go back again in January for our next clinic, which will include the urodynamics and VCUG testing and we will meet with a neurosurgeon as well that time as part of our clinic team. Our journey of a thousand miles started today with our first step in the spina bifida world!

Family Pics

Our littlest man's first photo shoot!! 

http://blog.lb-boutique.com/2014/08/25/thomas-newborn-photographer-columbus-oh/

Hats off!!

Thomas is doing very well. Wounds are healing nicely and so far no infection. We are straight cathing 4x/day and still getting very little when we do, so he is peeing on his own pretty well. He is gaining weight slowly but surely and starting to watch his brothers play and be interested. 

We got his stitches taken out yesterday and they did a head ultrasound showing that his ventricles haven't increased at all, so the shunt is doing it's job just fine. He has no more position restrictions to stay off his back or his shunt side! 

This is where his EVD was. Hair is growing back in and the scar looks great.

The shunt scar is still pretty noticeable. Just recently we have started venturing out in public. Normally Thomas is in a wrap on my chest so his head is the only thing people can see and that is right where the shunt wound is. It is very obvious that people notice it. They first notice the wrap and smile and ask how old then their eyes go to the shunt scar. This brings me back to the 'how much do I tell people' question. Most people do the polite dance and don't ask. They just pretend not to see it. One of the reasons I like going to the hospitals and in for check-ups (probably the only reason outside of it keeps Thomas healthy) is that people just ask there. It's like there is an unwritten code for hospital personnel and other parents with kids in hospital care, they can and will ask anything. I am thankful for that. It seems so honest and open which is comforting to me. I know most people aren't trying to be off-putting, but when they ignore something that they so obviously saw and noticed, it's like they are ignoring him or are uncomfortable with Thomas's diagnosis even thought they don't know it or even just uneasy with a less than perfectly healthy baby.  I know that they may not want to ask because they think it might upset me or maybe I would not want to talk about it, but that is quite opposite. I want all the information out there because I have found when people don't ask or don't know all the information they can't really fully enjoy this beautiful little boy. Maybe it is a barrier of fear or uneasiness with the unknown, but the people that don't ask, don't touch him or get close to him. They don't ask to hold him or even ask what his name is. I don't want to make people uncomfortable, but I don't want them to be scared of him either. He's not too scary of a guy really....

I had bought some cute little newsboy hats for Thomas. Being born so close to the fall, he was a definitely going to need some cute crochet hats. I am a sucker for hats, but I have hesitation putting hats on him because I don't want to hide his scars from people. I don't want the message to be that I am hiding his story and don't want to talk about it. I imagine this gets more difficult as he gets older and maybe can notice peoples glances or maybe even be self conscious of his scars or any other part of his spina bifida. I hope we can set the example to be proud of who you are and help to show those around you that your differences are what make you, you! 

 

Thomas is doing well

Not a lot to report. We are doing well so far. All wounds seem to be healing well and no signs of infection so far. Had some weight gain issues, but they seem to be resolved now and his little cheeks are starting to fill out. His awake time is getting longer and he seems more curious about everything around him, especially the two loud little boys that hover over him all day. Cathing is going ok. Our amounts are all over the place; some days it's a few drops while others can be almost 15mL. We are cathing every three hours still, which can make for long nights at times so I am hoping to call the urologist and see if we would be able to decrease the frequency of cathing. He is wetting diapers on his own, which is a change since shunt surgery and I would think that it is good news that he can empty himself, at least a little, on his own. He really makes it a challenge to cath him at times, he kicks his feet and shows his strength. At these moments I definitely get frustrated because I am so nervous about introducing infection and causing a UTI, that I am on edge during the process. When he kicks, sometime the catheter comes out a little and you can't push it back in since that would introduce bacteria, so we have to get a whole new catheter and start the process again, in this moment I have to remind myself that it is good he can kick and his strength is impressive given everything so my frustration needs to be put in it's place. We get stitches out next week on the 19th and have a follow up head ultrasound. Hoping for no news at that appointment. 

Fading scars

We are safely home. It is so surreal. We are home as a family and life is going on. The biggest change is the addition of a newborn, not the addition of spina bifida. He wakes at night and wants to be fed and changed. He sleeps during the day peacefully and quietly, almost mocking us that he won't be that quiet and unassuming at night. He has a Foley catheter in for two more days and that is really the only indicator of his SB, once that comes out, I am pretty confident that his diagnosis won't even be on my radar. John and I are convinced the scars and shunt are already healing and seem smaller, but really it is the fact that we don't see those when we look at him anymore, they are not as noticeable to us as they once were and are definitely not the first thing we see. He is our Baby Thomas. Not sick Baby Thomas or spina bifida Baby Thomas, just our new little Baby Thomas. I will admit that at moments when he is a little extra fussy or when his eyes do that newborn not focusing or going cross-eyed thing, it crosses my mind that it could be his shunt, but I always talk myself down and realize that it is typical baby stuff. I do take his temp regularly and measure his head occasionally, but that is to just keep a baseline so if something is suspicious I can compare those numbers quickly. Really life is just going on. I never imagined this is how it would be. That life would find it's new normal and would go on so easily. That all the scars, literally and figuratively, would begin to fade from view. Why was I so scared? What did I expect life to be like? I guess I just had tunnel vision on the hospital part and the surgeries and the diagnosis that it never occurred to me that we will find our groove and our new normal and it will feel so natural and complete, I am not sad about his SB, I don't feel like I am in mourning anymore. This is our baby just how he was meant to be and his big brothers are over the moon about him, although David doesn't want me to hold him EVER, I can tell he loves him.....in his own way. 

Today I had to drive back down to Cincy for my incision check. As I turned on the road to the hospital, I felt a little sentimental welt in my throat...are you kidding me? We haven't even been gone from here for a week yet. I was so ready to get home and leave this place, but driving down the street that I walked countless times to get over to the hospital to see him, I felt slightly sentimental. I even saw some people walking that I knew from the Ronald McDonald House. It felt comfortable to see it all from a new perspective. I think that is a good sign, I wasn't bitter about this place. I know deep down it saved his life and gave us the best possible chance for a good outcome. Don't be mistaken, I am hoping we don't need to come back and check in as a patient ever again, but just come for regular appointments. However, this place is the beginning of Thomas's story and I never expected it to hold value in my heart, but the scars are fading from it too. 

TELL THE WORLD

http://flipagram.com/f/GEH402vCZh

Not sure if this link will work or not, but here's a coming home slide show!!!! Let the rest if our life begin!!

Blogging is apparently harder than I thought

So a few of the posts are posting out of order...my bad. I guess I forgot to hit publish on some of them as I was finished writing them. So you will have to figure out the order like a puzzle....enjoy!!

Happy heart

Today.....happiness

Our first family photo ( sorry, future Thomas, that we took it from the wrong side and your butt is front and center in our first family photo!)

Shunt happens

(Note:this actually happened Sunday, July 27) So we are officially shunted, by we I mean he. We are free of the EVD (external shunt) which is awesome. I hated that thing (of course I am thankful for its purpose in keeping him alive and relieving pressure from his brain, but I hated it). We had to always make sure his head was level with the pole and stay on constant watch to ensure he didn't pull it out. It was an invitation to infection and most of all it drained his CSF (cerebral spinal fluid) to a bag that was just sitting in front of us. There is something unnerving about seeing the fluid come out of his body. But now it's gone!!! 

Baby Thomas has an internal shunt. It is definitely a trade-off. While he has no tube coming out of his head, he does now have noticeable tubing under his skin. 

It is a medium flow VP shunt (1.5 Delta valve). This brings it's own scary story with it. They have a failure rate of 40-60% and the average number of shunt revisions a person needs is 6.75. So we will have more than one shunt surgery, you just hope it's later in life when he can tolerate it a little better and when he can help identify the symptoms by telling us he has pain. Right now if it fails, we have to recognize the symptoms, which are not specific: irritability, sleepiness, vomiting, fever, or none of those or all of those or different ones. Well at least those symptoms aren't things a normal newborn would do (are you picking up on my sarcasm, because I am laying it on pretty thick!). The neurosurgeon also added that parents aren't very good at recognizing the shunt failure, half the time they bring them in and it is nothing. Well of course they do, you just listed all characteristics of a typical newborn! But as I mentioned in a previous post, this is worth it. I would rather be home and using my amazing detective skills to figure out if he is fussy because of his shunt or because it is the second Tuesday of the month. 

So the surgery went well, they said he did great and he basically slept all day yesterday since he was under general anesthesia for the procedure. Last night was our first real scare. We had some imaging done to double check the placement of the shunt and his ventricle size, the radiologist read the films and was concerned that his vents (that's what the cool kids call ventricles around here) had actually increased. This is the opposite of what the shunt is supposed to do so everyone was concerned. They had to track down the doc to see what he thought and on a Saturday night at 9:30 that is bit the quickest thing. So we were left waiting for a bit, thinking his shunt was failing and they would need to do a revision ASAP. Finally the doc called back and said he wasn't concerned. Everything was fine, Thomas was eating and had stirred a bit through the day, so he had no worries. Today when we came in, I got to speak to the surgeon who assisted in Thomas's surgery band he explained that they picked a valve that had a pressure a little higher than what the EVD was set at so they could intentionally plump up those vents (there I am being cool again) to keep his sutures in his skull (here is a diagram explaining what the sutures in the skull are, I thought sutures meant stitches so I had to ask http://www.stanfordchildrens.org/en/topic/default?id=anatomy-of-the-newborn-skull-90-P01840) from overlapping and fusing together. If the vents are too small, the sutures will sit on top of each other, so by plumping his vents with increased pressure it basically holds everything in place. It makes sense, would have enjoyed it if someone had explained that to us last night, or had even charted it so the nurses knew, but that's ok, we know now and there is nothing to worry about. 

Our biggest hurdle to get over right now is infection. Since he had an EVD, his chance of getting an infection is pretty high. And now that he has hardware inside his body, any little bugs that get in there will go right for the shunt and infect it, which will lead us to more surgery most likely. So we are thinking clean thoughts and trying to be as clean as possible around him. He can't be out in public for a while and not around any kids for a few weeks. We are crossing our fingers for no infection. 

This morning at rounds it was brought into the conversation about going home soon, I tried to be cool and surpass my initial reaction to championship fist and chest bump the neonatologist, mainly because it would probably hurt my stitches. We have to do 3 days post surgery antibiotics and then a circumcision the there is nothing holding us here if all else still looks good! So my realistic expectation is Thursday, which is awesome!!! I love having the nurses around all the time to teach us and to ask questions to, but I miss my big boys and my bed and real food and above all I can't wait to be a complete family of 5!!!!!

Home is in sight

We get to go home tomorrow!!!!!! Just a few little details to cross off the list and we will pack up and leave the hospital WITH Thomas!!! He will get to see the sunshine for the first time in his life and ride in his car seat and see his house and his room!!! We are slightly excited!

Update

Has actually been a pretty slow day or two. All lines are out (no IV's or PICC's or anything going into him). He is in a big boy crib instead of a warmer and has been holding his own body temperature just fine. All dressings over his surgery sites are off. He is breastfeeding fine and even back to wetting his own diapers. We are only getting a few mL's when we cath, so maybe we can decrease the frequency of cathing (right now it's 8x a day). We are waiting to get circumcised still, which should make cathing super interesting (sarcasm font). He is only on vitamin supplements, no meds! All wounds look great and are healing just fine. He is gaining weight slowly. Head ultrasound didn't show anything of concern with his vents. So really we are just waiting on the discharge list. There are quite a few things to check off before we go and to get all the moving parts going in the right direction takes time, but there is definitely light at the end of the tunnel and that light is shining on our house! It's pretty miraculous to me that just a few days ago, his head was cut open and hardware was put in his brain and now we are already talking about going home!

Thomas's Village

Sitting with my boy again and thinking about going home soon (hopefully only a few more days). 

As you can see he is thrilled about the idea!!

After my last post about how the NICU isn't an awesome place to be, I felt like I left something out. The nurses! While I don't like this place, the nurses that we have had have been extraordinary. They have turned what could have been a very dark, scary experience into one that was handle-able (easy, grammar police - poetic license). We will leave here with new members of our village and people that I will never forget. They are a part of Thomas's story and are like his own personal super heroes. It will be strange to be home and not have someone constantly there to ask a question to or advice from. They have had to deal with an endless line of questioning from me and have taught us to cath and really just taught us a lot. I will miss them all dearly. Luckily I have the NICU number memorized...

NICU's are tough

It's like an alternate universe in here. There are no windows and no real concept of time. It is both a time warp and time freezer. Some days I can't believe how fast they go, while others don't seem to end. There are constant alarms and beeps and cries and coos. Nurses and doctors whispering. Dazed parents sitting beside cribs looking lost. When I hear 'Response Team' called over the loud speaker and everyone quickly shuffle to the call (that is the call for resuscitation/emergency with a baby) my heart is simultaneously scared and sad for the baby and family, but thankful it's not Baby Thomas. When I see what battles some of these tiny little beings have to go through, I feel thankful that Thomas is doing so well and all his diagnosis isn't grim, which then makes me feel guilty or like we are imposters in this little world since we will get to go home and our little man is doing so so well. When I used to think about the NICU or even just about kids in the hospital, I would often wonder why parents aren't always right there all the time. How can they leave? How can they not be more involved? After having lived this life now for even a short period of time, I get it. It's hard being here. It's hard seeing your child hooked up to machines and struggling to get comfortable when there is nothing you can do. It is hard to feel like his mom sometimes because I can't hold him, I can't cuddle with him or dress him. Sometimes I feel like I have to ask permission to change his diaper. It is our job as parents to comfort and protect, when we are powerless to do those things it's hard to be there;  when you feel like there is a barrier between you and your baby it sucks the life out of you each day. So I get it. And really this is just another lesson that Thomas is already teaching me. Don't judge other people, especially how they choose to parent. You don't know what they are going through or how hard something might be for them. It is so easy to look at other parents and say 'I would never do that' or 'how can they be like that'. There is no right and wrong way to be a parent as long as you are doing what you are doing out of love. So I vow to not be as quick to judge those that don't parent the same way as we do, instead I will offer them an understanding smile that hopefully communicates, 'I get it and I see you doing what you need to do, both for you and your kid and you aren't alone'. 

Through the surgery

Thomas made it through the surgery and did great. He is amazing. Sleeping off the anesthesia now and hopefully will wake to feed this afternoon. Will update more specifics on the shunt later. Thanks for all the thoughts and prayers. 

Worth it

As I sit here with our Baby Thomas in my lap, I can't help but have my mind wander to the day when we are all home together. It will be such a great day. Right now all the things that I was so afraid of, like cathing and shunts and wheelchairs and leg braces, seem completely worth it if it means we get to have him home and be a complete family. I will gladly cath him as often as we need if that means he gets to play animals with John. I will learn everything there is to learn and become an expert on shunt malfunctions and infections if it means he can throw a ball with David. We will become wheelchair builders if it means he can sleep in his own bed. None of this seems scary or impossible when it means he gets to be home. Will I have this state of mind when I have to cath him and he is fussy and kicking and the other two boys are fighting and yelling in the background, I am going to go out on a limb and say no. And that's ok, I forgive future me for when I am frustrated and will hate spina bifida and get flustered because it is going to be hard, but it is going to be worth it. 

Last Day of the EVD!

Today is the last day we will have an external shunt. I am pretty pumped about this. Any day where we have less tubes that we are relying on, is a day closer to coming home. He will have his shunt surgery tomorrow morning, which I am slightly fearful of, but we will worry about that another time, right now I am thankful that a tube is coming out and hopefully our last surgery will be done by this time tomorrow. The shunt surgery is the most common surgery the neurosurgeons do here, they are very good at 

it and it seems pretty routine, so I am somewhat comfortable with the actual procedure (as comfortable as you can be with brain surgery on your one week old son, I guess). Here are some pictures of the EVD before we say goodbye to it...

So keep Baby Thomas in your thoughts tomorrow morning as we take the next big step in our journey. 

Go Go Thomas

We are all up in Thomas the Tank Engine sayings in here and I think it's fitting because this little guy is pretty awesome, like the little engine that could. He is so laid back. I have only seen him fussy once or twice in his first week of life and he has had to endure so much already. He just kind of keeps going and rolls with the punches. We had our VCUG test yesterday to test for kidney reflux and to see how well he can empty his bladder. The great news is no reflux right now. He can only empty his bladder halfway so we started straight cathing him yesterday, 4 times a day. Unfortunately, there is more coming his way. Today we have a head ultrasound and we are placing (do you like I how say 'we' when it has nothing to do with me...I am just piggybacking on his awesomeness!) a PICC line for him to get his antibiotics through to help ward off infection from his upcoming shunt surgery. Tomorrow we have bloodwork to do and either an MRI or a CT scan, then on Saturday we have shunt surgery. My instinct makes me hate all this invasive medical stuff and all the tubes and wires coming off of him and machines constantly monitoring him and basically making a barrier between him and I, but yesterday as I was watching him and seeing the fluid drain from his brain through his external shunt and hating the noise of the machines and beeps in that room, it occurred to me that all of this is saving his life. If he had been born at another time and place it is likely he could not have made it. Without a shunt in his brain, all that fluid would be doing some serious and probably fatal damage to his brain. I wouldn't pick to have him hooked up to all of this and go through any of this, but if it weren't for 'all of this' we wouldn't have him and we definitely would never get to bring him home. Yes, I said home....one day he will get to come home. Probably one day soon, and it's because of all these wires and machines and inventions. So today I am going to appreciate the life giving wires and tubes and the music of the machines and beeps. 

Another day

Not a lot to report today. He didn't eat well last night, he was spitting up his bottle, which was slightly concerning since that can be a symptom of his Chiari Malformation being more serious. When we made it there this morning, we had unfortunately missed rounds and weren't able to ask the doctors about the spitting up and if it was a major concern. When we did see him, though, his dressing was off of his incision so we got to see it for the first time. I thought it looked great and much cleaner than I expected. Not a lot of bruising and not much redness. 

When it came time for his afternoon feeding, he took 8mL for us and then just fell asleep, but the next feeding he decided it was time and took 15mL and then for the one after that took 20mL in the blink of an eye. So it was great to see him eating and it was a little relief to not see any more spitting up. A Chiari that is symptomatic is rare, but when it is present, can bring a whole list of issues, so I was really hoping that a symptomatic Chiari was not going to be the issue of the spitting up.  Here's Mr. Thomas wide awake and eating today.

I forgot that when you have a newborn how much they change from day to day. We can already see his little personality coming through. He doesn't like to be on his belly...at ALL! When he is on his belly he tries to turn his head and roll over, but he isn't quite strong enough yet, so he ends up just burying his face in the pillow. He can't be on his back yet, due to his incision, and he can't be on his left side due to the external shunt, so he gets two positions - his belly or his right side. We switch between those two positions each 3 hours. When it was time to be on his belly today he just fussed and fidgeted and kept pulling at his wires and burying his face, until he finally got what he wanted and we gave in and moved him back to his side and then he immediately fell asleep...lesson learned, Thomas will communicate what he wants and probably get it! Which means that we are all in trouble!!