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.