"You weren't like other children,
And God was well aware,
You'd need a caring family,
With love enough to share.
And so He sent you to us,
And much to our surprise,
You haven't been a challenge,
But a blessing in disguise.
Your winning smiles and laughter,
The pleasures you impart,
Far outweigh your special needs,
And melt the coldest heart.
We're proud that we were chosen,
To help you learn and grow,
The joy that you have brought us,
Is more than you can know.
A precious gift from Heaven,
A treasure from above,
A child who's taught us many things,
But most of all-"Real Love".
Friday, December 16, 2011
Tuesday, December 6, 2011
No More Injections
We had an ultrasound appointment November 23rd, and the results showed only small cysts left. The largest two were about 2cm. The dr has advised that he believes we've done all we can with the injections up to this point. He believes the next best course of action is surgery. We have an appointment scheduled for February 16th just to discuss the risks, procedures, recovery time expected, etc, etc. Then we will proceed with surgery either the end of March or early April.
I guess I feel good knowing we may be coming to a close on "Kaiden's Journey," but I also realize realistically this is something we are going to have to manage for his whole life. The dr has advised he won't be able to remove everything, but will do as much as possible. I guess I am also happy we are doing this now, instead of at a time when he would remember it. They do say babies heal faster than adults, so that's a positive point too!
I know Kaiden will prove again how strong he is and he will make me even prouder of him. I love that little man so much!
I guess I feel good knowing we may be coming to a close on "Kaiden's Journey," but I also realize realistically this is something we are going to have to manage for his whole life. The dr has advised he won't be able to remove everything, but will do as much as possible. I guess I am also happy we are doing this now, instead of at a time when he would remember it. They do say babies heal faster than adults, so that's a positive point too!
I know Kaiden will prove again how strong he is and he will make me even prouder of him. I love that little man so much!
Monday, November 14, 2011
HAPPY BIRTHDAY KAIDEN!
Kaiden turned one on November 8th. The last year went so fast, and was filled with many ups and downs along the way. I am so proud and blessed to have this little boy in my life now. Even though things haven't been perfect, I've loved every minute of it. Looking back on this past year, it's amazing to see how much my life has changed. It's not about me anymore, it's about him. He gets more personality, more friendly and more funny everyday. It's so amazing watching him grow, learn and try new things. You always hear that time flies...but you don't realize it until you have kids!!
On a more negative note, we were orginially told we'd be done all the treatments and procedures by now. It's taken a lot longer than originally expected. We have an ultrasound scheduled for next Wednesday to see if another injection would be worthwhile, or if we'll just schedule surgery for next year. My thoughts are torn about this. On one hand, I'd like to just continue injections. They aren't as invasive or traumatic for him. On the other hand, I'd like to do the surgery and possibly be done with this for awhile. But thinking about it, is so hard. I wish I could just be the one going through this. I hate seeing him have to deal with this.
But he is a strong little boy, and he makes me proud of him everyday! Happy Birthday Kaiden!! We love you so very much!! Let's try and keep this one more positive!!
On a more negative note, we were orginially told we'd be done all the treatments and procedures by now. It's taken a lot longer than originally expected. We have an ultrasound scheduled for next Wednesday to see if another injection would be worthwhile, or if we'll just schedule surgery for next year. My thoughts are torn about this. On one hand, I'd like to just continue injections. They aren't as invasive or traumatic for him. On the other hand, I'd like to do the surgery and possibly be done with this for awhile. But thinking about it, is so hard. I wish I could just be the one going through this. I hate seeing him have to deal with this.
But he is a strong little boy, and he makes me proud of him everyday! Happy Birthday Kaiden!! We love you so very much!! Let's try and keep this one more positive!!
Friday, October 7, 2011
Another injection day done!
I'm finally getting around to writing about our most recent injection. We had an original appointment on Septemeber 20th but Kaiden had a cold so it was postponed until the 27th. I remember lying in bed watching the minutes tick by thinking, "...need to sleep, gonna be SO tired if I don't just sleep..." I'm still so nervous the night before these appoitments. This is our 6th one and you think I'd be used to it by now, but I'm not. I eventually feel asleep only to hear my alarm at 3am to give Kaiden his last feed. Then I was back to watching those minutes tick!
We got to the hospital 2 hours early as required, and waited, waited and waited. They finally told us that the equipment wasn't working for the first appointment so we would be postponed at least another 45 minutes. Good thing Kaiden is easily amused strolling around the halls. I could've had a nap on his stretcher, while my mother-in-law wheeled him all over the place. We finally got in at 1pm, 2 hours behind schedule. I was starving, so I don't get how Kaiden wasn't freaking out. It's almost like he knows what's about to happen.
The injections went well, the dr said they did a lot of work. We had a good chat with the dr and saw his most recent CT scan. Boy, is there ever a lot of cysts wound in throughout all his nerves and vessels. We're just lucky it doesn't affect his airway or tongue. He advised us again that surgery will be required eventually, and still Kaiden may not ever be 100% "perfect." The surgery won't get rid of it all either, because some is so small and right up to his temple. But we'll take whatever we can get, and go one procedure at a time!
He came out of anesthetia quite quickly. He was super fussy, wouldn't drink from the bottle they gave, rolled around and cried for a bit, then fell back asleep. He did this a few times, before we were able to leave about 2 hours later. He drank a lot milk from his cup and ate some berries before we headed home. He slept the whole way home too. Poor little guy. We got home and he ate a huge dinner and had a big burst of energy right at bedtime, so he got to stay up an extra half hour. He slept all night too. The next day he seemed back to his normal self.
We have noticed some swelling which is normal. He had one day where he was not feeling well, 3 days later, and we just cuddled on the couch all day long. He slept a lot for a couple days around there, and is back to normal once again. It's hard to tell if the swelling is gone down at all since I see him everyday. Our next follow up appointment is booked for October 20th.
He also started daycare part time this week. I'm back to work full time in one week, and we wanted to start him early so the transition is easier. He really likes it, and I hope it stays that way! I think it'll be harder on me that him. I was always so worried about having kids make fun of him at daycare about his neck, but I've noticed that the younger kids don't really care. They are more curious than anything. His daycare ladies are super nice, and aren't phased by his neck at all. It took awhile to find a good daycare, but it all seems to work out in the end.
Kaiden at 10 months
We got to the hospital 2 hours early as required, and waited, waited and waited. They finally told us that the equipment wasn't working for the first appointment so we would be postponed at least another 45 minutes. Good thing Kaiden is easily amused strolling around the halls. I could've had a nap on his stretcher, while my mother-in-law wheeled him all over the place. We finally got in at 1pm, 2 hours behind schedule. I was starving, so I don't get how Kaiden wasn't freaking out. It's almost like he knows what's about to happen.
The injections went well, the dr said they did a lot of work. We had a good chat with the dr and saw his most recent CT scan. Boy, is there ever a lot of cysts wound in throughout all his nerves and vessels. We're just lucky it doesn't affect his airway or tongue. He advised us again that surgery will be required eventually, and still Kaiden may not ever be 100% "perfect." The surgery won't get rid of it all either, because some is so small and right up to his temple. But we'll take whatever we can get, and go one procedure at a time!
He came out of anesthetia quite quickly. He was super fussy, wouldn't drink from the bottle they gave, rolled around and cried for a bit, then fell back asleep. He did this a few times, before we were able to leave about 2 hours later. He drank a lot milk from his cup and ate some berries before we headed home. He slept the whole way home too. Poor little guy. We got home and he ate a huge dinner and had a big burst of energy right at bedtime, so he got to stay up an extra half hour. He slept all night too. The next day he seemed back to his normal self.
We have noticed some swelling which is normal. He had one day where he was not feeling well, 3 days later, and we just cuddled on the couch all day long. He slept a lot for a couple days around there, and is back to normal once again. It's hard to tell if the swelling is gone down at all since I see him everyday. Our next follow up appointment is booked for October 20th.
He also started daycare part time this week. I'm back to work full time in one week, and we wanted to start him early so the transition is easier. He really likes it, and I hope it stays that way! I think it'll be harder on me that him. I was always so worried about having kids make fun of him at daycare about his neck, but I've noticed that the younger kids don't really care. They are more curious than anything. His daycare ladies are super nice, and aren't phased by his neck at all. It took awhile to find a good daycare, but it all seems to work out in the end.
Kaiden at 10 months The morning of the injection
Wednesday, September 7, 2011
Finally heard from the doctor...
We finally heard from the doctor today. The entire surgical team has reviewed Kaiden's CT scans and prior photos. There is progress, although it has been slower than expected. There are still a few cysts that are injectable. We will proceed with 2 more injections. One in the next few weeks, and another 6-8 weeks after. They want to wait 4-6 months from the last injection and go ahead with surgery at that point. There are so many small cysts around the major vessels and nerves in his neck, that the surgery will be a whole day long. It won't remove everything, and we will have to manage it for his whole life. Exactly what I hoping and praying wouldn't happen. I don't want Kaiden to have to deal with this forever.
Still hoping and praying for that miracle...
Still hoping and praying for that miracle...
Monday, August 29, 2011
...still waiting...
Last injection was June 28th and we're still waiting to figure out what to do next. We had a CT scan, and finally recieved an email from the doctor who reviewed the scan. There has been improvement but there is still an extensive number of small cysts. He will review with the entire surgical team and let us know...still waiting...
Tuesday, August 23, 2011
Why are hospitals SO disorganized??
We had a 2:00 appointment today for a CT scan. After starving Kaiden since midnight, we left at 12:45 to get there right on time. We did get there about 1:45 and checked in. They came looking for us right away, telling us we where supposed to be there 2 hours ago. Who knew...not me! Maybe the lady scheduling my appointment should've told me that! Oh well...then they went on to tell me they were supposed to call me to push up my appointment by a few hours. That would've been nice, instead I was distracting a hungry baby all morning! I let it go....whatever...shit happens. This all happened after I had to call into the clinic to see when we were scheduled. Must've slipped their mind to let ME know of our appointment date...ha!
Anyways, they were rushing around trying to get a consent form signed, but wanted to start an IV right away while they were waiting. The freezing gel didn't have time to work, but they wanted to try anyways. The first try was in his foot, and when he started screaming and trying to get off the table, they had reinforcements come in to hold him down. The second try was on his hand, and he kept up a good fight! Talk about tramatizing a poor, little baby! When I started crying too, they decided to stop.
Finally, the consent form arrived and was signed, and they decided to sedate him first. I felt horrible and incredibly mad that my little boy had to go through all that.
The scan took about 20 minutes, and he was awake a few minutes after that. After a good feeding, he was his happy smiling self again. Hopefully, this doesn't leave a lasting impression on the little dude. This isn't the last time we will be going through something like this!!
Anyways, they were rushing around trying to get a consent form signed, but wanted to start an IV right away while they were waiting. The freezing gel didn't have time to work, but they wanted to try anyways. The first try was in his foot, and when he started screaming and trying to get off the table, they had reinforcements come in to hold him down. The second try was on his hand, and he kept up a good fight! Talk about tramatizing a poor, little baby! When I started crying too, they decided to stop.
Finally, the consent form arrived and was signed, and they decided to sedate him first. I felt horrible and incredibly mad that my little boy had to go through all that.
The scan took about 20 minutes, and he was awake a few minutes after that. After a good feeding, he was his happy smiling self again. Hopefully, this doesn't leave a lasting impression on the little dude. This isn't the last time we will be going through something like this!!
Thursday, August 11, 2011
The waiting game...
It's been a month and a half since the last injection. I had hoped we would've at least had another one scheduled by now, or had a follow-up appointment. But things take SO long to get going. I emailed pictures of the progress on Kaiden's neck. It's funny how all of a sudden I notice how much smaller it has gotten, and am happy. Then the next day it seems big again, and I'm discouraged with all the work we have left to do.
The dr wants to do a CT scan before continuing with injections, just to compare to the prior one. I tried to push for another injection asap, but he wants to wait. I guess he is the professional!! This is such a waiting game...
I'm back to work in 9 weeks. I can't believe it. It's going to be really exhausting working and doing these appointments. Plus my husband is working out of town all week, so I'll be on my own. At least my work is willing to compromise with me and give me paid days off for his appointments. I really lucked out with my manager being SO supportive through all this.
The dr wants to do a CT scan before continuing with injections, just to compare to the prior one. I tried to push for another injection asap, but he wants to wait. I guess he is the professional!! This is such a waiting game...
I'm back to work in 9 weeks. I can't believe it. It's going to be really exhausting working and doing these appointments. Plus my husband is working out of town all week, so I'll be on my own. At least my work is willing to compromise with me and give me paid days off for his appointments. I really lucked out with my manager being SO supportive through all this.
Kaiden at 9 months old
Some people should just shut their mouths...
I was at the grocery store today. I had an older woman come up to me and tell me how cute Kaiden was. I was so happy. It feels like people are just looking past his neck and seeing the true cutest of this little dude!
Then, I was waiting in line and another lady came up to me. She asked how old he was, and then asked what was wroung with his face. I told her and she said, "He'd be so cute if he didn't have that on his face." I was speechless. I didn't even know what to say. I knew the people in line where staring at me, wondering how I would respond. I almost cried right there. Luckily, she walked away before I slapped her! Then I just said out loud to Kaiden, that he is cute no matter what. He really is, and I want him to know that.
Some people just make me shake my head...
Then, I was waiting in line and another lady came up to me. She asked how old he was, and then asked what was wroung with his face. I told her and she said, "He'd be so cute if he didn't have that on his face." I was speechless. I didn't even know what to say. I knew the people in line where staring at me, wondering how I would respond. I almost cried right there. Luckily, she walked away before I slapped her! Then I just said out loud to Kaiden, that he is cute no matter what. He really is, and I want him to know that.
Some people just make me shake my head...
Sunday, August 7, 2011
New friends, new advice, new strength...
I came across a few other people dealing with children with cystic hygoroma today on facebook. It's nice to know I'm not alone. I feel bad about not posting pictures of Kaiden's neck on facebook. I'm not embarassed. I feel like I need to protect him from ridicule. I feel like it will all be over soon, and I can pretend it never happened. Is that completely ridiculous? He's 9 months old today, and we are still a long ways from being rid of this. I never imagined it would take this long. But as I hear other stories, we are lucky. We don't have to deal with a feeding tube, we don't have to deal with surgeries (yet), we don't have to deal with other complications...
I did come across this quote and it says alot...
You Are Strong
How often has it happened - an acquaintance hears your story or sees your child and says, "I'm not as strong as you. I could never deal with all the things you deal with." And you brush it off, and maybe even feel a little condescended to. But you know what? They're right. You are strong. You are facing things that the average parent doesn't even want to imagine, and you're handling them. Whether you were strong to begin with or had strength thrust upon you by necessity, you're one strong parent, one strong person. Your family needs that strength, your children thrive on it. You may wish you never had to be strong. But appreciate that strength now. It makes you special, capable, a force to be reckoned with.
I did come across this quote and it says alot...
You Are Strong
How often has it happened - an acquaintance hears your story or sees your child and says, "I'm not as strong as you. I could never deal with all the things you deal with." And you brush it off, and maybe even feel a little condescended to. But you know what? They're right. You are strong. You are facing things that the average parent doesn't even want to imagine, and you're handling them. Whether you were strong to begin with or had strength thrust upon you by necessity, you're one strong parent, one strong person. Your family needs that strength, your children thrive on it. You may wish you never had to be strong. But appreciate that strength now. It makes you special, capable, a force to be reckoned with.
Wednesday, July 13, 2011
Kids are mean...
We went to a little petting zoo today, and one kid, maybe 6yrs old, stared real hard, and turned right around as we walked by him. He even said to his dad "ah look." First time that has happened, and I wanted to punch the little kid!! Again, makes me wonder if he'll be better by the time he is in school. Originally I didn't want him to go to daycare with this, because I thought he'd get made fun of. But as we hang around more younger kids, I realize they don't care. But I PRAY that it's cured by the time he has to go to school. Because those older kids will make fun of him. Kids are mean. And it would break
my heart to know my baby is being picked on at school.
On a better note, we did finally find a good daycare. The woman who runs it wasn't phased by his neck at all. She was really supportive. The other kids there didn't even notice as they all played together. I'm feeling better about leaving my little man in a few short months. Especially now that I know he won't get made fun of at daycare.
my heart to know my baby is being picked on at school.
On a better note, we did finally find a good daycare. The woman who runs it wasn't phased by his neck at all. She was really supportive. The other kids there didn't even notice as they all played together. I'm feeling better about leaving my little man in a few short months. Especially now that I know he won't get made fun of at daycare.
A Roller Coaster of Emotions
Another injection today, this is #5. Kaiden was once again a real tropper!! A starving baby should be screaming in the waiting room, but not this one. He was laughing at Grandma! We had the usual wait time of 2 hours, and he was just starting to get cranky as we were called into the room. The nurses started putting the probes on him, and hooking him up while I was still in the room. He looked freaked out by how many people where hovering over him. I felt the urge to cry, as I left my little baby with strangers to go through this procedure all over. But I didn't cry. I'm sick of crying about this.
The injection went well 15ML removed and Kaiden was great in the recovery room. We had to wait an unusually long time afterwards. We left the hospital at 4...long day!!
It's a few days after the injection, and I'm feeling discouraged. I haven't felt this bad in awhile. I guess with the big space in between injections I kinda forgot about it, or put it out of my mind. I'm now realizing how long of a journey this is going to be for this poor little guy. I'm so proud of him, but I wish so bad that I could be the one going through all this craziness. What would it feel like to be baby put to sleep and wake up with strangers in a weird place. I feel awful! It also looks like his cysts have gotten bigger since the injection. Not sure if it's just swollen a bit. I know after the last one they still decreased for a couple weeks. So I'm trying to be positive. We still have such a long way to go. I wonder if he will ever look 'normal.' I can't believe he's almost 8 months and we still have a long road ahead of us. I've prayed for over a year, since we found out something was wroung. I know my prayers were answered and the physical aspect is the only thing wroung. But still I feel hopeless and discouraged right now, because we are still dealing with this. I guess I just have to take a deep breath, and go on. But it's a roller coaster ride for sure!
I spoke with my mother-in-law today. I was feeling down and she always makes me feel better. She reminded me about the last injection, where we saw some results right away but then it got hard and popped out like a golf ball. I remember that now that she told me. I remember nursing him and feeling it stick out through my fingers. So I just have to be patient, and the area they injected is hard now. Which also happened last time. Then it got smaller and smaller. So I will be patient, and hope for the best. I am also seeking out a naturopath to look at alternative natural remedies we may be able to try.
Before injection at 8 months old
After injection at 8.5 months old
The injection went well 15ML removed and Kaiden was great in the recovery room. We had to wait an unusually long time afterwards. We left the hospital at 4...long day!!
It's a few days after the injection, and I'm feeling discouraged. I haven't felt this bad in awhile. I guess with the big space in between injections I kinda forgot about it, or put it out of my mind. I'm now realizing how long of a journey this is going to be for this poor little guy. I'm so proud of him, but I wish so bad that I could be the one going through all this craziness. What would it feel like to be baby put to sleep and wake up with strangers in a weird place. I feel awful! It also looks like his cysts have gotten bigger since the injection. Not sure if it's just swollen a bit. I know after the last one they still decreased for a couple weeks. So I'm trying to be positive. We still have such a long way to go. I wonder if he will ever look 'normal.' I can't believe he's almost 8 months and we still have a long road ahead of us. I've prayed for over a year, since we found out something was wroung. I know my prayers were answered and the physical aspect is the only thing wroung. But still I feel hopeless and discouraged right now, because we are still dealing with this. I guess I just have to take a deep breath, and go on. But it's a roller coaster ride for sure!
I spoke with my mother-in-law today. I was feeling down and she always makes me feel better. She reminded me about the last injection, where we saw some results right away but then it got hard and popped out like a golf ball. I remember that now that she told me. I remember nursing him and feeling it stick out through my fingers. So I just have to be patient, and the area they injected is hard now. Which also happened last time. Then it got smaller and smaller. So I will be patient, and hope for the best. I am also seeking out a naturopath to look at alternative natural remedies we may be able to try.
Before injection at 8 months old
After injection at 8.5 months oldMore appts
Kaiden is 6 months old! I never imagined we would still be going through this now! I left a message on Friday for the dr to call me back. I'm hoping we can get another injection appt scheduled. I'm sick of just waiting around!! We've seen good results on the back of his neck, and the skin is even tightening up. Now let's get working on that chin area!! I hate waiting, and I don't understand why he wants to wait so long. Hoping he'll call back soon.
I spoke to the dr and the reason we are waiting is because once the bleomycin is injected in the cysts it also travels through the other channels and scars up the area around the actual cysts. We've notice major improvement in the back of his neck! He also doesn't want to keep pumping this little baby full of anesthesia. Understandable. We will re-access in about a month and schedule another injection after that.
Assessment went well. Dr was happy with the recent results on the back of his neck. He will get another injection set up within the next 2 weeks. Can't wait to keep seeing good results. The area under his chin is where the small cysts are, so we will start working on that now. I actually met a lady in the elevator on the way to this appt whose daughter also has this. Except hers is all over her chest, arm and side. She is dealing with the other dr we met before and I think this might be the lady he was telling me about when we met him. She had an injection appt that morning and we didn't have a lot of time to chat. I wish I would've got her email just to keep in touch. Her little girl was born 7lbs with 4lbs of tumour. She said it was slow going but seems to be working better lately. She couldn't believe how smooth Kaiden's skin still was after the injections. Her daughter's skin is puckering and leaving little scars all over. She said surgery wasn't an option for her girl because there are so many arteries and nerves throughout her cysts. They also almost lost her at 28weeks gestation when her cysts ruptured. I'm not sure if they had to deliver early, but just another
time when I realize how lucky we are to just be dealing with this. Things could be a lot worse.
Kaiden at 6 months
I spoke to the dr and the reason we are waiting is because once the bleomycin is injected in the cysts it also travels through the other channels and scars up the area around the actual cysts. We've notice major improvement in the back of his neck! He also doesn't want to keep pumping this little baby full of anesthesia. Understandable. We will re-access in about a month and schedule another injection after that.
Assessment went well. Dr was happy with the recent results on the back of his neck. He will get another injection set up within the next 2 weeks. Can't wait to keep seeing good results. The area under his chin is where the small cysts are, so we will start working on that now. I actually met a lady in the elevator on the way to this appt whose daughter also has this. Except hers is all over her chest, arm and side. She is dealing with the other dr we met before and I think this might be the lady he was telling me about when we met him. She had an injection appt that morning and we didn't have a lot of time to chat. I wish I would've got her email just to keep in touch. Her little girl was born 7lbs with 4lbs of tumour. She said it was slow going but seems to be working better lately. She couldn't believe how smooth Kaiden's skin still was after the injections. Her daughter's skin is puckering and leaving little scars all over. She said surgery wasn't an option for her girl because there are so many arteries and nerves throughout her cysts. They also almost lost her at 28weeks gestation when her cysts ruptured. I'm not sure if they had to deliver early, but just another
time when I realize how lucky we are to just be dealing with this. Things could be a lot worse.
Kaiden at 6 monthsAnother Injection Day
Yesterday was my birthday! Maybe I'll get a late present and we'll see great results today. I try not to get myself worked up, because I just get let down every time. But I do get excited that today will be different, will be better. Everything was right on time today...a first. And we were leaving the hospital by 3.30!! Instead of 5...good day. Kaiden is much older and more aware now during these appointments. Starving him is getting harder. He was a bit fussy after coming out of sedation, but overall was really good. He was smiling up the nurses after, and a few even remembered him from last time. They worked on the back of his neck this time, and I can see results already. Dr was there, and said to get in touch in a month and we will decide whether to do an injection then or wait a couple months. He thinks the front cysts are decreasing on their own. That would be wonderful!! Can't wait to see good results on his front, because summer is coming and we can't hide it anymore. But who cares. Everyone that sees him anyways, loves him. He is really cute, regardless of his neck.
Kaiden at 5 months
Kaiden at 5 months
Appts, appts and more appts...
Dr left a message today that they aren't prepared to proceed with surgery at this point, and they will re-asses Kaiden in a month with another ultrasound. He didn't mention anything about continuing injections. I was pretty pissed off. The injections seem to slowly be working and I think we should keep going with injections. He is gone for one week and will call us back when he's back at the hospital. I want to make sure he is aware that we want to proceed with injections. I think they are working, even though it is slow going, it's at least something. I don't want to just sit around and wait for a miracle. We need to be helping that miracle happen.
The next week, the dr called again. He wants to book an appt to see Kaiden in the clinic in a couple weeks to do another thorough exam of him and take some pictures of the progress. He's only seen him after injections, and would like to examine him once the injections has had time to do it's job. He discussed Kaiden's case with the whole pediatric surgery team and they are pretty much just staying to be patient. Injections will take time, and they arne't ready to jump to surgery right now. There is too much risk involved with the nerves in his face. He has had such success with injections in the past that he's been dissapointed with the results from these. But the other dr's have had cases that just take time. I wonder if by "time" they mean years. I would hate to send Kaiden off to daycare with this on his neck still, but it's looking like that might be the case now. Maybe I won't be going back to work in October. But that's still a ways away and I've been praying really hard! Miracles DO happen, and I believe he will be treated of this. Even if it does take time. Next injection will be in about a month.
I drove all the way to Hamilton for a world record appointment. 15 minutes in and out. And the same results I knew before we went. We are going to continue injections. The back of his neck will be easier to get rid of, as the skin has become tight in between the cysts. That's good. Under his neck will take more time. He will have excess skin there for a few years until he grows into it. You can tell already the cysts have decreased and he does have excess skin already. I was looking at pictures from before, and it's gone down alot. My husband and I always say we are going to kiss it away, because we always kiss his neck where the cysts are. Kaiden loves it and it makes him laugh sometimes too. We got extra space just perfect for kisses.
The next week, the dr called again. He wants to book an appt to see Kaiden in the clinic in a couple weeks to do another thorough exam of him and take some pictures of the progress. He's only seen him after injections, and would like to examine him once the injections has had time to do it's job. He discussed Kaiden's case with the whole pediatric surgery team and they are pretty much just staying to be patient. Injections will take time, and they arne't ready to jump to surgery right now. There is too much risk involved with the nerves in his face. He has had such success with injections in the past that he's been dissapointed with the results from these. But the other dr's have had cases that just take time. I wonder if by "time" they mean years. I would hate to send Kaiden off to daycare with this on his neck still, but it's looking like that might be the case now. Maybe I won't be going back to work in October. But that's still a ways away and I've been praying really hard! Miracles DO happen, and I believe he will be treated of this. Even if it does take time. Next injection will be in about a month.
I drove all the way to Hamilton for a world record appointment. 15 minutes in and out. And the same results I knew before we went. We are going to continue injections. The back of his neck will be easier to get rid of, as the skin has become tight in between the cysts. That's good. Under his neck will take more time. He will have excess skin there for a few years until he grows into it. You can tell already the cysts have decreased and he does have excess skin already. I was looking at pictures from before, and it's gone down alot. My husband and I always say we are going to kiss it away, because we always kiss his neck where the cysts are. Kaiden loves it and it makes him laugh sometimes too. We got extra space just perfect for kisses.
Second Opinion
Kaiden is 4 months old today! Times flies! We met a second dr at McMaster today. Sitting in the exam room, I still get teary eyed and pissed off that we even have to do this at all. I think about my niece who doesn't have to go through any of this crap. It's not fair. What did we do to deserve going through all this. Maybe because I know we are strong enough to get through it. But I can't keep letting these thoughts get the best of me. I have to be strong because my little boy is strong, and needs his mom. I've learned a lot about myself in this process. I am very strong, and want to be there for my little guy as much as possible. I've also learned he is an amazing baby! Sure he doesn't sleep through the night, but he smiles at the numerous new dr faces he sees, even though they poke and prode at him. I haven't meet a person yet that doesn't love this baby!
This dr has worked with our current one on his prior cystic hygroma patients. He is the one that does the surgeries. He pretty much told us the same things we've been hearing this whole time. There are major nerves
coming out from under his ear that go to the whole right half of his face. They are very fine, like his hair, so could easily be cut. It's very hard to get those nerves back if that does happen. He said even if we do surgery they may not be able to remove it all. Leaving any behind also leaves behind the chance of it returning. He also let me know about another patient, he had treated that same morning with injections. He said it was slow going at the beginning and then all of a sudden each injection got more noticeable results. It was much worse
than Kaiden's and they've seen great results with injections alone. I understand it's a slow process, but I am impatient. I can look past the cyst, and I am starting not to care what other people think. But I just want him fixed. I don't want him to have to go to daycare and possibly get made fun of because he looks different than the other kids. I'm hoping and praying these injections start giving us more results. I have noticed it has decreased in size, and I am trying to be patient. The dr's know what they are doing, and obviously know the best way to treat this. We just have to have faith and believe in not only them, but that this is meant to happen for a reason. Everything happens for a reason. I LIVE by that statement since this all happened.
Kaiden at 4 months old
This dr has worked with our current one on his prior cystic hygroma patients. He is the one that does the surgeries. He pretty much told us the same things we've been hearing this whole time. There are major nerves
coming out from under his ear that go to the whole right half of his face. They are very fine, like his hair, so could easily be cut. It's very hard to get those nerves back if that does happen. He said even if we do surgery they may not be able to remove it all. Leaving any behind also leaves behind the chance of it returning. He also let me know about another patient, he had treated that same morning with injections. He said it was slow going at the beginning and then all of a sudden each injection got more noticeable results. It was much worse
than Kaiden's and they've seen great results with injections alone. I understand it's a slow process, but I am impatient. I can look past the cyst, and I am starting not to care what other people think. But I just want him fixed. I don't want him to have to go to daycare and possibly get made fun of because he looks different than the other kids. I'm hoping and praying these injections start giving us more results. I have noticed it has decreased in size, and I am trying to be patient. The dr's know what they are doing, and obviously know the best way to treat this. We just have to have faith and believe in not only them, but that this is meant to happen for a reason. Everything happens for a reason. I LIVE by that statement since this all happened.
Kaiden at 4 months oldOur Wonderful Mother-in-Law
I went to a couple healing masses with Kaiden. The priest blessed Kaiden directly and said the blessing from us can be passed on to him. So he got triple blessed that night! I felt like crying as he prayed over my baby...not sure why.
I have prayed the novena for months now praying for him to be cured! I believe that God had already cured him of a lot of other things while he was in utero. But still, I feel hopeless at times. I feel frustrated, and let down. But I have to try and keep positive thoughts. Thank goodness for my mother-in-law, who is our most supportive person, she came to the second healing mass with me. She's been the one we call whenever we are feeling sad. She's just SO positive, and always making us feel better. She got us through everything so far. I never knew my husband would call her when he was upset about this, especially while I was pregnant, and she would make him feel better. He would then pass on those good feelings to me. We are so blessed to have her in our lives. She doesn't realize how special she is to us, because words can't describe what she has done and continues to do for us.
I have prayed the novena for months now praying for him to be cured! I believe that God had already cured him of a lot of other things while he was in utero. But still, I feel hopeless at times. I feel frustrated, and let down. But I have to try and keep positive thoughts. Thank goodness for my mother-in-law, who is our most supportive person, she came to the second healing mass with me. She's been the one we call whenever we are feeling sad. She's just SO positive, and always making us feel better. She got us through everything so far. I never knew my husband would call her when he was upset about this, especially while I was pregnant, and she would make him feel better. He would then pass on those good feelings to me. We are so blessed to have her in our lives. She doesn't realize how special she is to us, because words can't describe what she has done and continues to do for us.
More Trips Out and About
I finally brought Kaiden to work to visit. I was worried people would stare and think he was a freak. They were amazing. Everyone loved him and said he was adorable. He charmed them with his smiles! I felt relief! These people were understanding, because they knew everything I went through, and a lot of them are mothers themselves. And some of them even went through crappy experiences with their own children.
I also took Kaiden to a couple classes at the YMCA, but I had hooded sweaters on him hiding his neck. I'm realizing this isn't going away anytime soon and I have to accept that my baby looks different.
We are blessed that this is all we have to deal with. My friend, lost her baby a couple months before she was due. I can't imagine dealing with that! We are blessed that that didn't happen to us, and that Kaiden is healthy aside from the cyst. It's not affecting his development at all.
We started Mommy and Baby Fit swim at Breithaupt centre pool. His neck was right out there for everyone to see. I was a little nervous at first, but I am trying not to care if people stare at him. There was only
one other Mom in the class, and it didn't seem to phase her at all. She still commented on how beautiful his eyes are. The instructor dude looked at him a little weird, but I may just be overreacting. I will definitely be going back, and it was a great step towards not caring what people think!
I also took Kaiden to a couple classes at the YMCA, but I had hooded sweaters on him hiding his neck. I'm realizing this isn't going away anytime soon and I have to accept that my baby looks different.
We are blessed that this is all we have to deal with. My friend, lost her baby a couple months before she was due. I can't imagine dealing with that! We are blessed that that didn't happen to us, and that Kaiden is healthy aside from the cyst. It's not affecting his development at all.
We started Mommy and Baby Fit swim at Breithaupt centre pool. His neck was right out there for everyone to see. I was a little nervous at first, but I am trying not to care if people stare at him. There was only
one other Mom in the class, and it didn't seem to phase her at all. She still commented on how beautiful his eyes are. The instructor dude looked at him a little weird, but I may just be overreacting. I will definitely be going back, and it was a great step towards not caring what people think!
Family Day (February 2011)
We celebrated Family Day at my sister-in-law's apartment and took Kaiden for his first swim. He didn't like the cold pool, but loved the warm hot tub. On the way back up to the apartment in the elevator, I was
alone with a teenage boy, who clearly stared at him. I wanted to ask him what his problem was. But I just kept quiet. It reminded me of the time I was at the dr office, and an older man (maybe in his 40's) walked by
Kaiden in his carseat. He looked down and looked away really quick. Then turned fully around to stare at him again. I wanted to punch him in the face. What is wrong with people! Another time at Sears, the cashier was talking about Kaiden, when he was all bundled up in his seat. Then I pulled back the canopy to peek at him, and so did she. She turned away really quick when she saw his neck, and shut right up...what a bitch! The angry emotions are back! I just hope this is fixed before he has to go to day care and before he'll be able to realize that the other kids are making fun of him if he looks different. I don't want him to have his feelings hurt or be made fun of because of something that happened when he was inside me. It's not his fault, it's mine. I should be able to protect him no matter what, and fix him no matter what. I would give anything in the WORLD to have him all better.
Kaiden at 3 months old
alone with a teenage boy, who clearly stared at him. I wanted to ask him what his problem was. But I just kept quiet. It reminded me of the time I was at the dr office, and an older man (maybe in his 40's) walked by
Kaiden in his carseat. He looked down and looked away really quick. Then turned fully around to stare at him again. I wanted to punch him in the face. What is wrong with people! Another time at Sears, the cashier was talking about Kaiden, when he was all bundled up in his seat. Then I pulled back the canopy to peek at him, and so did she. She turned away really quick when she saw his neck, and shut right up...what a bitch! The angry emotions are back! I just hope this is fixed before he has to go to day care and before he'll be able to realize that the other kids are making fun of him if he looks different. I don't want him to have his feelings hurt or be made fun of because of something that happened when he was inside me. It's not his fault, it's mine. I should be able to protect him no matter what, and fix him no matter what. I would give anything in the WORLD to have him all better.
Kaiden at 3 months oldOut and About
Everything I've read about this said they have to remove everything in order for it to be successful and not come back. I would hate that Kaiden would have to deal with this for the rest of his life. I still wonder
if I could've done something different to make this not happen. I know I couldn't - it's just something that happens sometimes. But still I feel a bit of guilt, like I did this to him.
I've been to the mall a couple times with him and got weird looks from people. It makes me really angry. I can't believe grown adults can be so insensitive. But honestly, before this happened to us, I probably
would've stared too. Good thing it's winter and I hardly ever feel like leaving the house in the freezing cold! Hopefully this will all be taken care of by the time spring/summer weather arrives!!
Kaiden meet a few of my friends from highschool and I was super nervous about their reaction. They treated him just like a normal baby and still thought he was super cute. One girl, who is actually a nurse, made a good comment that it's nothing what he has. She's seen a lot worse as a nurse. I need to realize that we are lucky that this is all he has. There are so many other people dealing with things that are worse. We are lucky that he is healthy, and will eventually be fixed. I go through good days and bad days. Sometimes feeling sorry for myself, sometimes being angry, sometimes being sad, sometimes not caring at all and truly happy that I have the best baby in the world! It's a never ending roller coaster ride!
if I could've done something different to make this not happen. I know I couldn't - it's just something that happens sometimes. But still I feel a bit of guilt, like I did this to him.
I've been to the mall a couple times with him and got weird looks from people. It makes me really angry. I can't believe grown adults can be so insensitive. But honestly, before this happened to us, I probably
would've stared too. Good thing it's winter and I hardly ever feel like leaving the house in the freezing cold! Hopefully this will all be taken care of by the time spring/summer weather arrives!!
Kaiden meet a few of my friends from highschool and I was super nervous about their reaction. They treated him just like a normal baby and still thought he was super cute. One girl, who is actually a nurse, made a good comment that it's nothing what he has. She's seen a lot worse as a nurse. I need to realize that we are lucky that this is all he has. There are so many other people dealing with things that are worse. We are lucky that he is healthy, and will eventually be fixed. I go through good days and bad days. Sometimes feeling sorry for myself, sometimes being angry, sometimes being sad, sometimes not caring at all and truly happy that I have the best baby in the world! It's a never ending roller coaster ride!
The journey begins...
The first few weeks after his birth are a blur now. Between feedings, changing, visits and no sleep I barely remember anything. I remember people not caring about his neck being chubby, that was the best part of all. I didn`t really know how people would react. But our family and friends were amazing. They still loved the little dude no matter what.
We had a follow up appt scheduled for Dec to meet with the pediatric surgical team to discuss treatment for Kaiden's cytic hygroma. Over the next few weeks, the cysts doubled in size and we had the appt moved up a week. The consulation went well, and seemed very positive. The dr said he's treated many of these, and some much larger. We would start with draining the cysts and injecting bleomycin to scar them. The first happened right before Christmas. We thought we would get the best present of all - a new chin for Kaiden!! Kaiden wasn't sedated for this one and they drained 100ML of fluid from his neck. It wasn't that noticeable at all. We were incredibly frustrated and dissapointed that we couldn't see any difference. We had been counting down the days for this injection in hopes of seeing real results. I can`t even explain how upset we were that nothing seemed to change. We were SO let down!
The second (Jan 6th) and third injections (Feb 22nd) he was sedated and they drained 50ML of fluid. Still not very significant results. A catscan revealed a lot more cysts than they had expected. There wasn't much difference after the injections and we started feeling frustrated with the results. It`s not just a quick appt. You have to starve your child for 8 hours before, and hang out in the hospital for an entire day. It was very draining on all of us. And not seeing results made it even worse. All this effort, for nothing!
We were told at the initial consultaion that they have seen this a lot and treatment is fairly simple. The dr is just as frustrated as we are at this point. He wanted to consult with another dr who has done these cases with him to determine future treatment. He advised that surgery will probably happen at some point, but may not even remove everything. It's terrifying thinking about your little baby under the knife, and possibly not even completely treating him. I would hate to see him go to daycare or school and be made fun of or have people stare at him. I just want to protect him as much as I can. I would give anything in the world to get rid of this, but I can`t. Just time and patience...
Kaiden at 2 weeks old
Kaiden at 4 weeks old
Kaiden at 2 months old
We had a follow up appt scheduled for Dec to meet with the pediatric surgical team to discuss treatment for Kaiden's cytic hygroma. Over the next few weeks, the cysts doubled in size and we had the appt moved up a week. The consulation went well, and seemed very positive. The dr said he's treated many of these, and some much larger. We would start with draining the cysts and injecting bleomycin to scar them. The first happened right before Christmas. We thought we would get the best present of all - a new chin for Kaiden!! Kaiden wasn't sedated for this one and they drained 100ML of fluid from his neck. It wasn't that noticeable at all. We were incredibly frustrated and dissapointed that we couldn't see any difference. We had been counting down the days for this injection in hopes of seeing real results. I can`t even explain how upset we were that nothing seemed to change. We were SO let down!
The second (Jan 6th) and third injections (Feb 22nd) he was sedated and they drained 50ML of fluid. Still not very significant results. A catscan revealed a lot more cysts than they had expected. There wasn't much difference after the injections and we started feeling frustrated with the results. It`s not just a quick appt. You have to starve your child for 8 hours before, and hang out in the hospital for an entire day. It was very draining on all of us. And not seeing results made it even worse. All this effort, for nothing!
We were told at the initial consultaion that they have seen this a lot and treatment is fairly simple. The dr is just as frustrated as we are at this point. He wanted to consult with another dr who has done these cases with him to determine future treatment. He advised that surgery will probably happen at some point, but may not even remove everything. It's terrifying thinking about your little baby under the knife, and possibly not even completely treating him. I would hate to see him go to daycare or school and be made fun of or have people stare at him. I just want to protect him as much as I can. I would give anything in the world to get rid of this, but I can`t. Just time and patience...
Kaiden at 2 weeks old
Kaiden at 4 weeks old
Kaiden at 6 weeks old
Kaiden at 2 months oldHe arrived...FINALLY!!
40 weeks came and went and still no baby...Kaiden arrived 8 days overdue. After 15 hours of labour, he was turned and not straightening out so we had a c section. What a crazy experience that alone was!!
I just wanted to mention why we decided to name our baby "Kaiden." We went through a ton of books and websites trying to find a boy name. It was hard. As we went through test after test, and our little baby kept passing everything with flying colours, we knew we had to find a name with a good meaning. So Kaiden means "fighter and spirit of battle." Because he put up a good fight and still is!
After finally getting to meet Kaiden, the next day and without being all dopey from the drugs, I was surprised by the cysts. They weren't as we had expected, and were all around his neck. He was put in the NICU right after delivery for 5 days while they observed him and made sure it was safe to bring him home with us. We stayed in the hospital as well through that time. It was weird, not being with my baby right after he was born. I think it took me longer than I had expected to bond with him just because he wasn`t with me right away. But now, that bond gets stronger everyday and he is my entire life!
We finally got released on the Friday, and brought home our beautiful baby boy.
I just wanted to mention why we decided to name our baby "Kaiden." We went through a ton of books and websites trying to find a boy name. It was hard. As we went through test after test, and our little baby kept passing everything with flying colours, we knew we had to find a name with a good meaning. So Kaiden means "fighter and spirit of battle." Because he put up a good fight and still is!
After finally getting to meet Kaiden, the next day and without being all dopey from the drugs, I was surprised by the cysts. They weren't as we had expected, and were all around his neck. He was put in the NICU right after delivery for 5 days while they observed him and made sure it was safe to bring him home with us. We stayed in the hospital as well through that time. It was weird, not being with my baby right after he was born. I think it took me longer than I had expected to bond with him just because he wasn`t with me right away. But now, that bond gets stronger everyday and he is my entire life!
We finally got released on the Friday, and brought home our beautiful baby boy.
Seems like SO long ago...but I remember like it was yesterday!
I'm writing this to not only get out all my feelings about this whole situation, but maybe I can help someone else at some point who is going through the same thing. There isn't a lot of info out there about cystic hygroma and what treatment is like. Even though the dr tells us it's quite common and relatively easy to cure.
Here is our story...
I received a phone call from my midwife at work. My original "plan" for my pregnancy was having a midwife, delivering in Kitchener, and doing it naturally. Boy did that NOT work out at all!! I ended up having 2 OB's, delivering in Hamilton, and NEEDING those drugs! Luckily at this point, I can look back on it and laugh now.
Anyways, my 20 week ultrasound revelead something on the baby's neck. I remember when I was at the ultrasound appt, I was looking on the screen. Everything said normal, except NECK - said see below, and I couldn't see the notes made on that part.
The midwife said it was a branchial cleft cyst, not to worry, but was going to refer to Hamilton just to double check and make sure. We went to Hamilton the next week for another ultrasound. After the us we went to the clinic to discuss the results with the dr. They gave us a pink pamphlet with all this info about genetic disorders, terminating pregnancies, and so on. I didn't think I needed to read it, but I browsed through it while we were waiting. Finally, got in to talk to the genetic counsellor. She adivsed us that our baby has cystic hygroma. The majority of babies (70%) with this also have some sort of chromosome abnormality (down syndrome, etc) and we may want to terminate our pregnancy. She also explained the chances of him reaching full term where slim. She was telling me I was going to loose my baby. I remember dry heaving in the bathroom I was crying so hard. We had an amnio done that same day and would have preliminary results by the end of the week. With full results a couple weeks later.
They also had us meet a social worker to make sure we would be able to handle things once we got home. I got a dr's note to have the next 3 weeks off as I dealt with things. I only took three days. I sat at home by myself and was just too depressed. I would sit in the bathroom downstairs and cry, so that my husband wouldn't hear me. We had just started to decorate the nursery and I didn't even want to go in there. I wasn't even sure if we would ever meet this baby.
We got negative results from the fish test by friday. The amnio was also negative for everything. We had genetic screening done on all the genes in our baby as well as our genes. Everything came back normal. More tests for noonan's syndrome and some other syndromes all came back normal. An ultrasound on his heart to see defects also came back normal. He was a healthy boy except for the cysts. What a roller coaster ride, waiting out all these results! We are SO happy to have a wonderful support system that got us through when we were at our lowest points.
We had weekly ultrasounds in Hamilton and the cysts weren't growing but baby was developing normally and was a good size. From 20 weeks until he was born we were making trips to Hamilton on a weekly basis. Thank God work was co-operative and understanding with all my time off! During this time I went through a lot of emotions. I was pissed off this was happening to us. You see so many people have healthy babies.
Some people smoke and drink and still have healthy babies. Some people don`t even want to have their baby, some are willing to give their baby away! Some even abort a perfectly healthy baby because of the timing alone. I never realized how precious they really are!!!! As friends, family and co-workers started hearing about our situation, I started hearing the stories that people don't tell you unless you are going through something shitty. Then you realize even worse situations happen everyday and we should be grateful this is all he has. I also believe so strongly that everything happens for a reason.
I believe this happened to us, because God knew we could handle it. It also made us stronger and I realized how important and strong my husband is. I realized I can count on him in the worst of times. You realize who is truly there for you, and who is supportive and who really cares.
Here is our story...
I received a phone call from my midwife at work. My original "plan" for my pregnancy was having a midwife, delivering in Kitchener, and doing it naturally. Boy did that NOT work out at all!! I ended up having 2 OB's, delivering in Hamilton, and NEEDING those drugs! Luckily at this point, I can look back on it and laugh now.
Anyways, my 20 week ultrasound revelead something on the baby's neck. I remember when I was at the ultrasound appt, I was looking on the screen. Everything said normal, except NECK - said see below, and I couldn't see the notes made on that part.
The midwife said it was a branchial cleft cyst, not to worry, but was going to refer to Hamilton just to double check and make sure. We went to Hamilton the next week for another ultrasound. After the us we went to the clinic to discuss the results with the dr. They gave us a pink pamphlet with all this info about genetic disorders, terminating pregnancies, and so on. I didn't think I needed to read it, but I browsed through it while we were waiting. Finally, got in to talk to the genetic counsellor. She adivsed us that our baby has cystic hygroma. The majority of babies (70%) with this also have some sort of chromosome abnormality (down syndrome, etc) and we may want to terminate our pregnancy. She also explained the chances of him reaching full term where slim. She was telling me I was going to loose my baby. I remember dry heaving in the bathroom I was crying so hard. We had an amnio done that same day and would have preliminary results by the end of the week. With full results a couple weeks later.
They also had us meet a social worker to make sure we would be able to handle things once we got home. I got a dr's note to have the next 3 weeks off as I dealt with things. I only took three days. I sat at home by myself and was just too depressed. I would sit in the bathroom downstairs and cry, so that my husband wouldn't hear me. We had just started to decorate the nursery and I didn't even want to go in there. I wasn't even sure if we would ever meet this baby.
We got negative results from the fish test by friday. The amnio was also negative for everything. We had genetic screening done on all the genes in our baby as well as our genes. Everything came back normal. More tests for noonan's syndrome and some other syndromes all came back normal. An ultrasound on his heart to see defects also came back normal. He was a healthy boy except for the cysts. What a roller coaster ride, waiting out all these results! We are SO happy to have a wonderful support system that got us through when we were at our lowest points.
We had weekly ultrasounds in Hamilton and the cysts weren't growing but baby was developing normally and was a good size. From 20 weeks until he was born we were making trips to Hamilton on a weekly basis. Thank God work was co-operative and understanding with all my time off! During this time I went through a lot of emotions. I was pissed off this was happening to us. You see so many people have healthy babies.
Some people smoke and drink and still have healthy babies. Some people don`t even want to have their baby, some are willing to give their baby away! Some even abort a perfectly healthy baby because of the timing alone. I never realized how precious they really are!!!! As friends, family and co-workers started hearing about our situation, I started hearing the stories that people don't tell you unless you are going through something shitty. Then you realize even worse situations happen everyday and we should be grateful this is all he has. I also believe so strongly that everything happens for a reason.
I believe this happened to us, because God knew we could handle it. It also made us stronger and I realized how important and strong my husband is. I realized I can count on him in the worst of times. You realize who is truly there for you, and who is supportive and who really cares.
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