Thursday, March 29, 2012

My Strong Little Boy

So yesterday was a big day for us all. It was Jaxon's first laser treatment. I was so full of nerves making the hour drive into San Diego where the hospital was located. I was prepared to cry my eyes out as we left him with the dermatologist, so I didn't wear any mascara because Lord knows I wouldn't need anymore help looking like a basket case while my son was getting laser treatment and there were other kids there getting ready for major surgery.

We were supposed to arrive an hour early to fill out paperwork and such. The children's hospital was beautiful and really catered to kids. The nurse took Jaxon back to get his height,weight, blood pressure and oxygen levels. Our big boy weighed 15.1 lbs with clothes on! He was also 25 inches long. While I held Jaxon the nurse put the blood pressure cuff on him and an oxygen sensor on his finger. She distracted him with some bubbles; which he was amazed by!! (I thought that was a neat way to keep his mind off of things.) We then took Jax back into a little waiting area where he was able to eat a little bit then he was given Tylenol. (For any parents struggling to get their kids to swallow a medicine, just blow in their face. It worked like a charm for Jaxon.) The dermatologist came and asked us if we had any questions and I told her that Jaxon's hemangioma was starting to change colors in the middle. She said that could either be a really good sign or bad sign. It was either 1) Starting to involute/ stop growing and begin it's slow process of shrinking or 2) It was going to break open and ulcerate. She was glad that I pointed it out and told me that she wasn't going to laser that portion of the hemangioma because in rare cases it does cause it to break open and bleed. After answering our questions she took Jaxon and we were led to a small closed off room with coffee available. After my first small cup I hear a baby crying and ask Jake if he thought it sounded like Jaxon. Turns out it was! He was gone from our sites for literally less than 5 minutes! I didn't even cry so I was so proud of myself! Jaxon stopped crying as soon as he saw us and the dermatologist said he did a great job. She applied a numbing cream before the laser and then applied some Aquaphor afterwards. We already had a follow up appointment set up with her on April 10 and she said we'll do a second round of laser in about a month. We are supposed to really watch his lip and if it does ulcerate and bleed then we're supposed to call her office immediately and we would put him on the oral Propanolol instead of laser as his form of treatment.

As far as recovery, Jaxon did great! It was a little red and swollen for a couple hours but he was able to nurse as soon as we got home. He never acted like it bothered him. He is one tough little boy!! And last night I realized the discoloration in the middle of his lip had gotten much bigger, so I'm not sure if that's a good or bad sign. I guess I'll find out at our follow up appointment. Little man was so tired that he slept from 8:45pm- 4:30, he nursed for 10 minutes then was back asleep until 8:30am!! He usually wakes up in the middle of the night between 2-3 am and then every hour and a half to two hours after that. I had to check on him a couple of times to make sure he was still breathing because it was out of the norm for him. When he woke up he was all smiles as usual and still is eating well and not in pain from what I can tell.

Here are some pictures of Jaxon before and after his laser treatment:

A week or so before laser, you can see its starting to discolor.

A couple hours after laser:

Morning after laser:

I'll update you guys if anything new happens!

Mommy, Daddy and Jaxon

Wednesday, March 28, 2012

Just a reminder for Daddy

Jaxon and I made something new for our home today! We made this picture to put on our sofa table to remind Jake why we love him. And the best part? It was super cheap! We got the picture frame 50% off from Michaels for only $3.99, the picture stand holder was on clearance for $5.99 and the scrapbook paper was $0.69!

I just wrote on the scrapbook paper, "I love you because:" and you can write on the glass of the picture frame with a dry-erase marker to change it as often as you want.

Check it out:

What a great way to remind your significant other daily that you love them.

Wednesday, March 21, 2012

Yay! Treatment!


We got a call yesterday morning saying they had a dermatology appointment available later that day for Jaxon. We jumped right on it and went to the doctor. She told us that we have two different options in treating Jaxon's hemangioma. 1. Try a less-invasive laser treatment. It will stop the growth of the hemangioma and eventually it'll involute when he's older. 2. We can take Propranolol as an oral medication which would stop the growth and help it shrink. The downside to the medication is that it needs to be highly regulated because he is so small and it will lower his heart rate, blood pressure and blood sugar if not watched properly. I know Jake and I can handle all those things no problem, but we wanted to try the less-invasive approach first. If we aren't pleased with the results she said we're more than welcome to change our minds and try the Propranolol. We aren't sure how many laser treatments he will need. Jake and I are thinking if we don't like it after the first one or two times then we'll switch to the medicine (which he'll also be older by then and it won't be as big of an issue then). Jaxon will get a topical numbing cream then get a few zaps with the laser. He should be able to nurse shortly after he gets it done. It's expected to have some swelling and be a little blue in color for a short time. Another thing we have to keep in mind is that the laser doesn't effect the tissue that deep. That being said, it might not stop the growth since recently we've seen that it has been bulging out from behind his hemangioma. I'll continue to take pictures and monitor the growth on a weekly basis after his treatment to look for results. His laser treatment is scheduled for a week from today at 0940. Unfortunately, it's all the way down in San Diego so it'll be a drive for us and we have to arrive an hour early. We actually check in with all the surgery patients because the laser is in an OR. I'm going to feel so bad seeing all the kids in there waiting to get surgery. This hospital is like Children's Mercy in Kansas City. So everyone pray for Jaxon for a speedy recovery, a painless procedure and great results afterwards!

Love you all,
Jake, Alycia and Jax

Monday, March 19, 2012

Jaxon is 3 months old!

Sweet little Jaxon is now three months old! Can you believe it? Our big boy now weighs 14.6 lbs. I tried to measure how tall he is and I got the same measurement as the pediatrician got at his two month check up so I don't think it's right. Oh well, he's a big boy now.

He recently rediscovered that he can roll over from his tummy to his back. He has always hated having tummy time, but not he knows how to get out of it and never stays on his tummy for more than a minute. He's a little rollie pollie! He recognizes Jake and I now because he'll look for us if we're across the room or get a big cheesy smile when he sees us. It's so cute when he first wakes up in the morning and he just has a grin from ear to ear and starts kicking away because he's so excited to see you. Jaxon finally laughed while we were home, so that's a new milestone he has met within the last month.

Here are two different videos of Jaxon rolling over:  Video 1  Video 2

We finally started putting Jaxon in his crib in his own room. The first couple nights he had no problem but ever since the third night he has hated it!! Little man is fighting his sleep sooo bad! We just started having a bedtime routine for him to see if that'll help him and so far no luck. We take him upstairs, change his diaper, swaddle him up, read him a story while he has his nighttime bottle. He gets sleepy during his bottle and story and as soon as he feels his eyes start to close they dart back open and he starts wailing! His screaming cry lasts for about 5 minutes then he'll calm down and be wide-eyed for another 10 minutes then start to get heavy-eyed again. Once he falls asleep in our arms we wait a little bit then put him down in his crib. He wakes back up after we put him down and starts screaming his head off again. The poor thing has probably cried more in the last 4 nights than he has his entire life combined. His voice is now hoarse and you can tell he's just not a happy man. Every night I hope it gets a little better, but it hasn't. It took us two hours to get him to bed last night. My poor boy!  :(

So I'm pretty sure I got Jaxon's dermatologist appointment moved up to this week instead of May 2! I called the dermatologist and told her that there's no way we could wait until May because so much could happen between now and then. She said that they could put us in as an "emergency" appointment if Jaxon's pediatrician called in. So I made that phone call and left a message for his doctor saying that he won't be seen until May and I think its' starting to effect his eating so he needs to be seen ASAP. He called me back and said that he's trying to get us in this week. Now I'm just waiting on the dermatologist to call us back and confirm.

Overall, it has been a great month and I can't wait to see what Jaxon has learned by April!

Love you all,
Jaxon, Alycia and Jake

Thursday, March 15, 2012

All About Hemangiomas

Our son is the most beautiful and perfect blessing we could ever receive. How can other people not see that? They look at him and all they can see is his lip.

I had a very typical pregnancy, no complications or worries, besides the couple false labor alarms. My labor and delivery went as smoothly as it possibly could have. My beautiful baby boy was finally here! But despite how routine everything went my son still ended up having a birthmark called a hemangioma.

I know I've briefly explained what it is on my blog before, but I'll try to be more detailed this time. A hemangioma is a buildup of blood vessels underneath the skin. It's considered a benign tumor and can be superficial or underneath the skin. They usually occur on the neck and head but also show up on the rest of the body. Hemangiomas usually are not present at birth but show up as a slight pink mark within the first few weeks of life. They grow in size and get darker for about the first year then they'll slowly start to shrink and sometimes go away completely within a few years. They say 50% will be gone by age 5 and 90% by age 9. Sometimes they'll also become raised from the skin. Most doctors take a "wait and see" approach when it comes to treatment, meaning they'll just monitor it and make sure it doesn't ulcerate and that with time it'll go away on its own. Other times, like when they appear on the eyes, nose, mouth or internal organs, treatment will be needed. Since hemangiomas grow rapidly in the first year and it is impossible to know what turn they'll take, the ones on these important areas need to be closely monitored with treatment started as soon as possible. Treatments include laser therapy to help reduce the red pigment, corticosteroids and beta blockers to make them stop growing, and finally surgical removal of the hemangioma. Of course these all come with their own side effects and warnings since such a young child is involved. Less than 10% of babies get them with females being 3x more likely to get them than males.

Unfortunately, I've had to do all my own research on the topic because our pediatrician just told us to "wait and see" what happens with it (but with my research, I've read that since its on his lip he should have been seen by a pediatric dermatologist as soon as it appeared). It wasn't until I told our pediatrician that I think he might have one on his left inner eyelid that he referred us to the dermatologist.

When Jax was just a week and a half old we noticed a little mark on his lip. We thought it was a blood blister since coincidentally he sucked in that side of his lip when he slept. It wasn't until the appointment with the ENT doctor when he was about a month old that she told me it was a hemangioma. I started doing my research and came across some Google images of them. I was absolutely mortified!! What was I going to do? How do I stop this from happening? Luckily for us, a lot of those pictures are from severe cases and I don't think Jaxon will end up like that. Jaxon's hemangioma has started to grow pretty quickly the past few weeks. Our dermatology appointment isn't until early May which really scares me. There is so much that could happen in two months. We have to keep his lip moist so it doesn't break open and bleed because that'll leave a noticeable scar even if his hemangioma goes away. I have emailed a world-renowned surgeon, Dr. Levitin, who deals with vascular birthmarks for his opinion. He has offices in New York and Los Angeles. From other parents I've talked to, he really knows what he's doing and is extremely helpful. I'm assuming when we're finally seen by a doctor that we'll be put on Proponol for several months to see if it stops the growth of the hemangioma. If not, we'll probably discuss surgery options to remove it and correct any abnormalities that it has done to his lip.

I understand people are going to be curious and ask questions about my son's lip. On good days I'll probably stop and explain to them what it is. On other days I'll quickly write it off as a birthmark. But when someone makes rude comments about it or accuses me of hurting my son then Mama Bear will come out. If adults, the ones who are supposed to think before they speak and be the older, wiser kind say rude things to me about Jaxon then what am I supposed to expect when he goes to school? How am I supposed to be okay with kids teasing him about the big mark on his lip and always asking him questions? How am I supposed to bite my tongue when he comes home upset because someone new pointed it out? We all know how mean kids can be and how they don't know how to hold things back. My son could be the most sweetest, funniest, good-looking boy but unfortunately he'll still get made fun of. I hope he has the strength to laugh it off and not feel overpowered by the bullies. I hope people can see past his hemangioma and learn all about Jaxon, the boy with the best personality that despite his hemangioma is still incredibly handsome!

Jax about a week old, before hemangioma

Jax 12 days old, beginning hemangioma

Jax about 3 weeks old beginning hemangioma

Jax about a month and half old

Jax a little over 2 months old

Jax yesterday, 3 months

Jax 3 months

I know that God will not give us anything that we can't handle, so I know this is His way of showing me that I am strong enough to deal with it. Jaxon is strong enough to deal with it. We will continue on and find ways to cope and treat his birthmark and one day we'll look back and laugh at how much stress we went through.

Our son is the most beautiful and perfect blessing we could ever receive. How could other people not see that?

Thursday, March 8, 2012

Jaxon's First Trip to KC

Jaxon and I just got back home from his first trip to Kansas City. He did such a great job on both airplane rides, only fussed a couple times while he was hungry. Each plane ride was, of course, completely full. The trip from San Diego to KC we lucked out and had the only open seat on the airplane next to us! When we landed Jaxon decided to spit up ALL over me, but I'm glad he waited until the last minute to do so so I wasn't sticky and gross for three hours. On the plane ride from KC to San Diego he did even better than the first time. It was another full flight and we had a nice older couple sitting next to us. They both told me how good he was during the flight and commented how cute and sweet he is (duh!). :)

The hardest part about traveling with Jaxon by myself was going through security. I had to hold him, try to grab a bin from the ground and put my shoes and belongings inside. I also have to take out Jaxons bottle from a zippered pocket and along with my cell phone and put it in bin too. Luckily each time we went through security we had someone nice there to grab a bin for us and put it on the table. Putting everything back into our bag was hard once it passed through security's x-ray machines. It was just a lot to hold onto Jaxon and do all this at the same time since he is still so small to where he doesn't have complete head control.

When we arrived to KC we had an amazing greeting party waiting for us! Mom, Dad, Kyle, Missy, Grayson, Kensley, Grandma and Grandpa were all there holding signs up! It was a wonderful surprise since I thought only my mom was going to be there. We went to a McDonalds after getting my bags so we could all sit and talk for a little bit before going our separate ways.

Jaxon and I made our rounds trying to see everyone we could while we were home. He got to meet almost all of his family, besides a few from Jake's side that couldn't be there. We had a blast seeing everyone, but boy was it exhausting! It seemed like we were on the go every minute of every day we were there, but it was totally worth it. Jaxon was a trooper through it all and is such a good little boy!

I mostly wanted to update to post some pictures from our visit. Unfortunately I didn't get pictures of Jaxon with everyone he saw  :(  but we'll make up for it when we come home in June!!

here is a link to a giggle I caught on video::  Jaxon Giggling