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.