Finger Surgery

Ok so surgery details and updates!

My little lucky fin had his first hand surgery on Thursday (10/23/14) on his left hand.

This is what it looked like going into surgery. This way you can visualize it as I try to explain all that they worked on. 

As you can see the pointer finger and the pinkie finger both still had bands around the tops. People often question what I mean when I say he still had bands, so here it is. The bands are still technically active due to the fact that as he grows, the bands to not and would eventually amputate the tips of his fingers. At least this is my understanding. So because of this, the bands needed to be cut and released so this would not happen. The doctor went in and did what is called a "Z-stitch" which means exactly what it sounds like, they stitch up his finger in the pattern of a Z. 

Next. The middle finger and ring finger were fused together as you can see above. The doctor split the two and did a Z-stitch on the middle finger as well and tried to make it "less bulbly" as the doc put it as well as removing the little bundle of skin. 

We went in bright and early at 6 am that morning and waiting until 8:50 for him to be taken back for surgery. He was starving and exhausted to say the least but he made it through. The nurse was awesome and came out a few times to give us updates on how he was doing. Each time was a positive report! 

We waited what seemed to be forever and around 10:40 the doctor came out and told us the good news, that he was done and was able to accomplish everything he had wanted! We could see our little man in just a little bit but had to wait for them to cast his hand. 

When we got back there he was not happy :( It's so hard seeing your baby. Your one year old baby hooked up to all sorts of machines, screaming because he's hungry but his throat had a breathing tube down it during surgery so it's all scratchy and dry. It's rough to see. And then when you get to hold him, to finally hold that precious child and he calms down while he eats but still isn't happy... That sucks. They ended up having to give him some more Valium because he wouldn't calm down. Needless to say he slept after that while we tried to get his stats stabilized. That took about 2 hours before we could leave the recovery room and go back down to our room that we were in that morning. Little man seemed to just sleep all day but when he was awake he was happy! It was precious :) Our good friend Joe decided to stop by with some coffee which was great! We spent the rest of the afternoon debating whether or not to stay over night to monitor his stats or not (it was his breathing.) After a lot of deliberation we decided it was safe to go home! We ended up leaving around 4:45 to finally go home! Jude did relatively well his first night with a cast, woke up a few times but went back to sleep. And ever since surgery he has been so cuddly and just wants to be held! So cute and this mommy loves it! 

Since being home we have had some big adjustments. Things people don't warn you about and you don't think about. You think of all the normal things such as pain levels, not being able to use that hand, hitting things with his cast, etc. But what you don't think about is how will he crawl on the tile? Will he hold a bottle? How about holding his food pouches without them falling? Also, the pain meds mess with my baby! I hate giving it to him but how can I not when he just had surgery and is in pain. I'm just gonna say it: having a baby in a cast, sucks. So there it is, although I am SO grateful that he pulled through and he is a strong little boy and will do just fine, as a mom I hate seeing it. I hate knowing that he is only cuddling because he is in pain and doesn't feel well. Things that I can't necessarily control. 

Anyway, I'm done and now onto some pictures from the big day! 

This picture was taken after the extra dose of Valium to help him calm down in the recovery room.

Wagon ride to keep the little man entertained while we wait to go home!

Cuddling with mommy :)

And his cool new camo cast and eating a popsicle to help his throat! 

He will have his cast until November 13 at least and then we will figure out the next surgery for his right hand. 

Have A Blessed Day! 

So much going on!

I hate not having a computer charger! Can't write enough and then I feel like all my posts are so long! So I will do a quick update here and then have another post for surgery :)


As most of you know, Jude turned 1 on the 19th! I was proud of myself and kept it together quite nicely. We had a sports themed birthday party for him and all friends and family were there to celebrate. It was quite nice :) Below are some pictures of his big day! We got a jersey made for him to wear on his birthday and it turned out really well!

We had his birthday at our clubhouse and they put this on the welcome sign! Loved driving up to see this :)

A very uneventful cake smash lol. He seemed to have no interest in the cupcake at all! Oh well, I'll be happy if he isn't a fan of sugary things! 

Showing off his new boots that he got! 

His special jersey :)

We had a blast at his birthday and are so grateful for everyone that was able to come and celebrate with us! Thank you and we can't wait for more birthdays to come! 

Have a Blessed Day

Almost ONE, here we come!

Holy cow time does fly by! I can't believe my little man will be one in a week! ONE! How is this possible? It seems like just last week we were off and running to the hospital because I was in labor. It seems like just yesterday I was holding him for the first time, hearing him cry and needing to be loved and cuddled. Now my little man is off and running! He started walking a few weeks ago and doesn't ever seem to have time to stop moving. As I read back over that it seems about though he is walking consistently but he's not, just a fast crawler and a soon to be runner ;) 

He is progressing like every child around his age too. He can pick things up with no problems, he can walk like I said and nothing stops him. I'm so proud to see him accomplish so much at such a young age! I knew to never put limits on him, simply saying that he wouldn't be able to do something but in the back of my mind I did think that it would take some extra time. I honestly thought that he would be a late walker considering he is missing all toes on one of his feet. He proved me wrong to say the least! I also thought that grabbing toys or something small like a Cheerio would take some extra time as well, yet he has been doing that for months now! I can't wait to see what else he proves me wrong with ;)

Surgery update:

I think I had said in the past that he would hopefully have his hand surgeries when he turned one and we are still hoping for that! We had an appointment at Shriners for the surgeon to take a look and see when it would be possible to start the surgeries and they said they are hoping to get us in on October 23! I had been praying it would be after his first birthday so he wouldn't have a cast and I think that's what will happen! We are still waiting to get the confirmation call but I think that will come this week as well as a pre-op appointment and then surgery will be a week from Thursday! 

Now... I'm going to try and explain what they will do to his hands so hopefully you can follow along :)

They will start with his left hand. See the picture below so you can understand easier what they will do. 

First, there are bands around his pointer and pinkie finger. They will go in and release the bands, this way when he grows, they bands wont grow. Meaning. As he grows and gets older, if the bands are not released they could eventually amputate his finger from the band up. So they will go in and cut the band and create a "Z" stitch which basically looks like Charlie Browns sweater or, a Z :) Next they will go and separate the ring finger and middle finger. There is more than enough skin for them to accomplish this with no problem. After that they will release the band that is wrapped around his middle finger and try to make it less of a bulb. There's a term for it that I can't remember, but his middle finger will always have the bulb as it is part of ABS. But, they will try and make it less so it is easier for him to function. That will all happen within on surgery and then he will be in a full cast called a club cast. This means that the cast will completely cover his hand and fingers and go all the way up to his shoulder. He will be in the cast for roughly 4 weeks while everything heals up. 

Next one

Now to me, I always thought this hand would only need one surgery and if anything his left hand would need more than one but I was wrong. Goes to show how much I actually know! Ha. So his right hand will need to separate surgeries unfortunately. The reason being is that they can only operate on one side of the finger each time so if the hand needs fixing on both sides of the finger it must be separate surgeries. So this one they will separate the pinkie and ring finger, hoping to keep the pinkie tip but there are no guarantees that they can do that depending on how the tip gets the blood flow. He will then be in the same type of cast, they club cast for roughly 4 weeks as well and then go back in, once it is 100% healed for the next step which is just making a cut between his ring finger and middle finger. It is more webbed than we thought and so they will make it less webbed so he can use his fingers better. He will be in the same cast for the same amount of time. 

To say we have a long road ahead is an understatement but we are ready. Having his first surgery on his foot back in the summer really helped prepare me for what is to come. These surgeries will be around 2-2.5 hours so it is much longer than his foot but I think we are ready. Personally, I am ready because I want to see how he grows and functions when his fingers are separated and he can use them better. I'm nervous and excited all at the same time. I know he will be amazing and pull through like a champ :)  

Now for some cute pictures over the past few weeks :) 

We took a shopping trip with some friends down to Ikea. Well we had to get quite a few big items and we had 2 kids, 1 stroller and this flat cart. Jude is a little older and so we put him on the cart like this and wheeled him around Ikea. He loved it! 

We went on a bike ride and I happened to grab his rain coat incase it started to rain... Needless to say it did and we got wet. At least I got a cute picture out of it! 

This is one of my favorite pictures. This is our friend Justin sitting with Jude showing him how to throw a basketball and roll a soccer ball. It was captured perfectly! 

Have A Blessed Day :)

One of those days

Today (and the last few days) have been one of those days. You know, the ones that make you mad and jealous and sad all at the same time. I see so many baby pictures and hear stories of other babies and I'm mad my little one is missing fingers and toes. I realize these new parents don't know any better, I'm sure I would do the same but man... It kills me seeing all their pictures of "cute baby toes" or "look at those perfect little baby feet" or the picture where all fingers are wrapped around mom or dads finger. We will never get that with Jude.

*** Disclosure *** 

I love my little man with every fiber of my body and he is perfect and will accomplish anything he sets his mind to!

With that said. As a mom of a child who is missing fingers and toes you can only imagine how hard it is to see brand new, precious newborns, with all ten fingers and ten toes. I sometimes can't help but to be mad and ask why. Why us? Why Jude?

Sometimes I just get so frustrated that I want to punch a hole in the wall or scream. He is growing up so fast and accomplishing so much already but I realized, I wont have to hear him crying and running to me because he slammed fingers in the door. I wont be able to comfort him when he is crying because he can't wear flip flops. We wont have those moments. I realize to most parents those are dreaded moments that they try to keep their kids from but me, I'm going to miss those things. I know it may sound crazy to all of you but until you go through it, until you have a child who is missing fingers and toes (or more) I'm sorry but you wont understand.

I also wonder what he will think if we get pregnant again and our second baby is born with all ten fingers and ten toes. Will Jude be jealous or mad that he doesn't have them? Will the sibling ever tease Jude for his lucky fins? I hope that we raise all of our kids to never tease anyone like that but you know how siblings can be towards each other!

It makes me sad to think about the potential of how kids will treat him when he gets to school. I often wonder how kids will react to him and his precious fingers and toes. I dread the days that he comes home from school, holding back tears because the kids in his class were mean to him. I sometimes think about how I will handle it when he does go to school... Will I talk to the teachers and principle extensively about ABS and how to handle it? Will I maybe talk to his whole class about how he is a little different but that it doesn't mean he can't do all that the other kids can do?

I know that he is only 10 months old and we have a long way to go but as a mommy, you think about your children and what the future holds for your kids quite often.


Anyway, on the bright side Jude now blows kisses and cut his first tooth!! (FINALLY!) He is taking it like a champ and is adorable with his first little snaggle tooth :) He is also trying to stand on his own now which makes me scared cause that could mean walking soon and this mommy isn't ready for that! He is already on the go so much that I'm not sure I'm ready for him to be walking yet! He crawls super fast and gets into lots of trouble at home ;) I love him so much and know he will do great things!


Here are a few pictures taken by a good friend of mine! She and her husband are photographers/videographers. We took the boys out one day and she got some great shots! Check out more of their work here!

http://www.highlightstudios.net/ 

Jude and his buddy Jax

Never leaves without that bunny!

Have A Blessed Day!

Quick Update

Jude gives high fives! Or are they a high 2 1/2's? Ha either way, he is high five-ing (most of the time) waves hello and goodbye and claps!

He just turned 10 months and I feel like as soon as that day came, he has changed more drastically than in the last 9 months combined. He crawls every where and FAST! I chase him all around the house as he crawls and pulls up on anything and everything. There are times where I go in the kitchen for a few seconds (in eye shot of the living room) and next thing I know he is down by my feet crawling around... HOW DO THEY DO THAT?? He is a fast little sucker.

Not only that but his personality is growing so much and you can see how he is blossoming. It's super precious :) 

I wish I had more time to write but life is crazy right now so I must move on! Thanks for stopping by though!

Have a Blessed Day :) 

Stay Positive!

This post is dedicated to all the positive things about ABS. I know as a mommy who has a son affected by this it can be hard to stay positive. Well I am in a bible study now all about being a positive mom and I thought it would be good to list all the good things about ABS.

Here goes!

- Only a few fingernails to trim

- Only a few toenails to trim

- Can't flick anyone off (  ;)  )

- No need to buy flip flops

- Get to know so many other families with children with ABS

- Be taught awesome lessons from my son

- Anything I think he can't do and does, is incredible

- He can beat all odds

- He will be a hard worker

- He will be determined

- Some shoes and socks fit for a longer time

I know that there are a million other things and I will add to it as I think of them but for now, this is my little list. Growing daily. But I have this list written down so that I (and any others) can look at this and know there are some good things about ABS! I know many of us parents can dwell on all the negative (trust me, that's all I could think about while I made this list) but you have to stop thinking about the "bad" and start realizing that all of those things, your children will prove you wrong in and do anything they set their minds to. Feel free to comment with any other positive ideas as well! 

Have A Blessed Day!

Shoes in Holland

Since it's summer everyone is wearing flip flops or going barefoot. Well... when you have a son who is missing toes on one foot you start to realize how important or not important shoes are. If you ask my husband he will tell you that I absolutely love baby shoes! When I was pregnant that's all I wanted to buy, shoes. I guess its the girl in me ;) Anyway, its hard seeing all these cute little babies and toddlers in flip flops knowing that my son will never be able to wear normal flip flops. But! The fun and positive part of it all is that I then get to go look for other types of sandals that his adorable little feet will fit in and lets me honest, he looks cute in anything!

An update on my little guppy is that he is now crawling everywhere and pulling up on anything and everything! I am chasing him around all day everyday and when it comes to naps! Forget it! Unless he falls asleep while he is being fed and rocked there is no way that he will lay down and nap. He gets up and plays all the time, nap time is a joke now... Hoping that's just a phase!

I have a fun story for you guys since it seems to have been a while since the last post. All about being positive!

So since Jude is up and crawling everywhere we put him on the floor while we get ready so he can crawl and play rather than be strapped into a toy. Well the other day we were in his room and he has a floor fan and when we change him it gets moved off the changing table onto the floor. If you don't remember to put it back up, little man will get into it for sure! So we caught him crawling towards the fan and told him no, that he doesn't have any fingers to spare if they got caught in the fan! He also did this with the door while he was playing with it the other night. Now he's never gotten hurt and the positive (I always try to see the positive, even when my natural instinct is to be negative) is that if a door slams in his fingers, it probably wont matter because they are shorter! (and cuter ;) ) He is going to be lucky whenever he has a sibling come along who tries to close his fingers in the door, he can giggle and laugh at them because it wont happen as often if at all :)


Something else that has been on my mind is a story that I read in my bible study this past week. It was about a mom who had a child with a disability and was asked to describe what it was like to raise a child like that. Now, I don't know about any of you but I have never been asked that, maybe it happens when they are older but it has never happened so far. Anyway, she goes on to say that it is like a vacation. You have this plan that you are going to Italy, a fun, fast paced environment, you've had friends go there and it's all the craze, so you decide to go. You get on the plan and endure the long flight there only to find out you're in Holland! Yes. Holland, not Italy like you planned. You now have to vacation in an unexpected, unplanned place but you make the best of it and enjoy your time there.

Now, I read this and cried because it was the perfect explanation on what it is like! I went through my pregnancy with a few friends and their children were all born with fingers and toes and no problems and yet here I was in Holland with a newborn missing fingers and toes and I was devastated. I now can't even imagine my life in "Italy" with everyone. It's like a breath of fresh air and I am so grateful for my son and his lucky little fins. They are truly amazing and it's even more amazing to see him use his hands and feet for anything and everything. Not only that but he is keeping up with all the other kids and is having no issues what-so-ever. I am beyond blessed to have him as my child and consider it great joy to go through life with him. He has taught me so much already that I can't even think about what the future brings!

Here is a link to the story if anyone wants to read it :)

http://www.our-kids.org/archives/Holland.html

Have a Blessed Day!