Treatment #2: January 13th, 2011

Today was Enler's second treatment on his port wine treatment journey. Graham, I and Grandma Kling took the day off to be with Enler. I woke up at 3 am to breastfeed Enler - his last feed before the morning treatment. Then we were up at 4:30 getting ready to leave by 5:30 for a 6 am check in at Phoenix Children's Hospital (PCH). Grandma met us there.

Because we had been through this before the whole process went very smoothly and quickly. Unlike the first treatment, this time Enler was not the first on the schedule. We also did not have an eye exam this time (he will go for an outpatient check up later this month). We were back in the pre-op area by 7:30 am and Enler was in the treatment room by 8 am. We met with the dermatologist and anesthesiologist prior to going back to the treatment room. Both were wonderful. Enler started a nap while we were in the waiting room and slept until right before going back for his treatment. He was very pleasant throughout the whole pre-op period.

We found it easier leaving him with the doctors and other staff this time. We had been through the process and knew we could trust it and the providers. Once we left him we went and grabbed breakfast. Almost as soon as we got back to the waiting area, the dermatologist headed out to tell us the procedure was over and it had gone well. They increased the magnitude of the laser this time, 8.5 joules the first treatment and 9 joules this time. They will continue to increase it each treatment. Additionally, they have started using Continuous Positive Airway Pressure (CPAP) during the procedure. The thought is by using this during the procedure the vasculature is brought closer to the superficial skin and therefore responds better to the laser. Our dermatologist learned about this recently during a conference by the laser creator in Portland.

Our dermatologist, who we adore, told us Enler's port wine stain is deep so it will take more treatments. The exact amount he cannot predict. Most likely he will need between 6 - 8 treatments, maybe more. The dermatologists plan is to keep going until the mark is completely resolved. If we feel comfortable with the progress prior to that, then we can stop earlier. We are on board for going for complete resolution. Graham had been concerned that Enler's birthmark could become thick and deformed. Our dermatologist told us that some do transform but usually you see signs by Enler's age. He sees none of that so suspects we won't have to worry about that. He also told us that in his practice the chances of needing re -treatment later in life for recurrence does not happen very often, approximately 10 - 20% of the time. The literature shows about a 50% recurrence rate, but his results have been better than these reported values. This was all good information.

After confirming with Graham the best Irish bars in the valley, and dropping off prescriptions, the dermatologist was off and we were being taken back to the post-op area. When Graham and I got back Enler was in tears. The nurses were trying to feed him a sippy cup, but he hasn't mastered the sippy cup yet. I had grabbed a bottle prior to going back so instantly picked him up, cradled him and started feeding him. This quieted him down for awhile. Once he started crying again the nurse suggested I wind him, as lots of times the babies get air in the bellies that causes them discomfort. After a huge belch, Enler was back to finishing his bottle. Graham went and got Grandma and she came back to give Enler cuddles and love with me. We hung out with him until the IV was out, he was changed and ready to go. We were all home by about 11 am.

We had thought Enler would sleep most of the day like he did after the first treatment and we were prepared for massive cuddles. But because Enler did not need intubation this time, he did not receive as much sedation. Therefore we had a pretty normal day at home with him (with just a little more cuddles than usual). He ate, napped and played like normal. He is starting to crawl faster and can pull him self up to a standing position like a pro. He had a visit by his Uncle Alex before bed and was all smiles and giggles up until bed.

It was a good day and we feel so lucky to have such excellent doctors, nurses and facilities to take our baby to for his treatments. We also feel so lucky to have such a supportive family. It was easier today then the first treatment and we imagine it will only continue to be easier. We will document his bruise resolution progress and post that next! Thanks for following along.

Treatment 1: The Healing Period

We documented Enler's progress until resolution of his bruise post first treatment. Here is our photo log.

Treatment Day

getting cuddles from mommy

Day 2

Day 3

Day 4

Day 5

Day 6

Day 7

Day 8

Day 9

Day 10

Day 11

Day 12

Day 13

Day 14

Day 15

Day 16

Day 17

Day 18

Day 19

Day 20

All healed up and ready to play! Thanks for following along with our journey :)

First Treatment

We got home a little while ago from Enler's first treatment. We are sitting here on the couch next to my mom who is cuddling our beautiful sleeping baby.

The poor thing developed increasing congestion and a cough yesterday. It was a bit worse this morning but we weren't sure if that would affect the treatment or not so headed to Phoenix Children's Hospital (PCH) to find out. We were up at 4:45 am (although I had gotten up at 2:45 for his last feed prior to the procedure). It was raining and lovely outside. We got showered and woke up the wee man and got him dressed. We were out the door by 5:30 and checking in at PCH at 6 am. Mom met us there.

The whole process went very smoothly. After checking in at the front desk we went back to admitting. There I had to fill out some paper work and pay the facility fee ($200). We will still be billed for the physicians. Shortly after we were called back to pre-op. We had lovely nurses who took Enler's vitals and gathered his information. The anesthesiologist came and met with us and said it was OK to proceed given his congestion and cough. We were also visited by the eye doctor, who is lovely, and the dermatology fellow. The dermatologist was running a wee bit late so we wouldn't see him until after. Within 30 minutes we were taken back to the procedure room. Enler slept through most of this - what a good boy! He only fussed when the drops were put in to his eyes to dilate them.

Back in the procedure room there was a lot of commotion. There were approximately 8 people in the room and it was very bright. It made a difference that everyone was so welcoming and warm. We laid Enler down on the procedure bed and the strawberry anesthesia mask was placed on him. Once he was out we each gave him a big kiss and headed to the waiting area. We experienced a bit of anxiety and sadness leaving our little guy. The only way we were able to make that journey out there was knowing that the physicians and other staff were going to take excellent care of our little man.

One by one the docs came out to tell us how it went. First, the eye doctor. No sign of glaucoma! His eyes are looking great. We don't need another visit until 3 months from now. Then, the dermatologist and fellow arrived. They said the procedure went well. For his first treatment they started with the lower power on the laser. The treatment was focused on the darker area towards his mid face and they avoided going past his hair line. I guess there has been some hair thinning in other babies. They don't get to that area until he's older. Next treatment will be in 2 months (although we'll wait until February until I have some more time so I can have the day off with him). In regards to his healing, we should expect that his bruising will improve over the next week. It should be all gone within 10 days. We have an antibiotic cream to apply twice a day until then. If it blisters, which they don't think it should, we have an prescription for steroids. We probably won't see significant improvement for 4 -5 months - and we'll already be into the 2nd treatment by then. What an adventure.

The last doc was the anesthesiologist. He was such a sweet man. He said everything went well although Enler experienced laryngeal spasm and required intubation. This was most likely secondary to his congestion. He was now extubated and doing well getting cuddles by the nurses. We were so thankful.

We were then taken back to the post op area. It was a bit of a shock at first seeing Enler with the big purple bruise on his face. Although we had looked at photos of other kiddos who had been through the treatment, nothing can prepare you for seeing your own son all bruised up. His face had dark purple dots on a dark pink background and it was swollen. All we wanted to do was give him lots of kisses and cuddles.

By 9:30 am we were headed home to heal. A very quick and successful procedure. Here are some photos from the journey. We will continue to update as he heals.

Grandma Christine and Grandpa John's Impression

My mom was in the room with us when Enler was born. She was a great support during the birth and helped document his entry into the world. Meanwhile, my dad patiently awaited his grandsons (which he predicted from the start) arrival with my brother Joe. They were the first family members to meet our new little guy. Here are my mom and dad's thoughts about Enler's birthmark.

There was soooo very much excitement and energy around Enler making his appearance into the world, when I saw and then heard Graham saying something like, "oh goodness, does he have a bruise on his face?" In the businesses of all that was happening the physicians and nurses took a look and said something to the effect that, "it may be a bruise or a birth mark." While the whole process of checking him, weighing him, cleaning him and taking care of his Mom went on, it became clear that it was a birth mark of sorts. I could tell that Graham was worried and Juliana was concerned and I shared the worry of something unknown. I was so caught up in the miracle of it all, and the fact that with the confidence Juliana had in her doctors, the feeling of it would be okay, surely was okay.

Honestly, writing now at 6 months all I can think of was what a perfect baby he was. What a miracle and how lucky we were and what a wonderful delivery team Juliana and Graham were. Seeing all of him and holding him he was that...our perfect miracle.

I was so in awe of the birth and of Enler and happy when we kept getting scores and reports of his perfect health. So the birth mark was something that would be explored and understood and dealt with at a later stage. It would take some time, a few days, before we got all the information to realize that he had a Port Wine Stain. So we had a name of what it was and gradually the whole story of what his journey could have been and what it would be.

When his Grandpa John and I talked about it he said that he knew that the birth mark was of concern when he first looked at his grandson. His thoughts were immediately for Juliana and Graham that they not feel disappointed that he had it and that it took away from him. He also said that he wouldnt want them to worry what people would say about Enler. In fact, all along he has said to leave it (except for the medical reasons) because it was a part of him.

Granny Ann & Granda Danny's impressions

Graham and I asked his folks to send us their thoughts and first impressions of Enler's birthmark. We are so blessed to have such a supportive, loving family.

Here are their beautiful words.

"Dear Graham, Jewel and Enler,

It is with a heavy heart that I write this. When Enler was born, and Graham told us the baby had a Port Wine Stain on one side of his little face, I felt very sad. Then some photos arrived and we saw for ourselves the Port Wine Stain on such a beautiful baby. Dad thought it was the least that could have happened to a new born baby.

I know Jewel & yourself are the best parents any child could have and the procedures Enler has in front of him will break both your hearts but it is the best in the future for the child."

in a later letter...

"Enler's first laser treatment is this month. Poor wee darling. It breaks my heart to think of him going through it. I know how busy you both must be, wish I was there to help you.

Lots of love, Mum & Dad"

These pictures are from Ann & Danny's month visit to Arizona in June to meet their new grandson. The top one is taken in northern Arizona in Williams and the bottom from our professional family photos. These are the first Ann & Danny have ever had at a photo studio!

Insurance approved treatment!!!

We just found out last week that the insurance has approved Enler's first treatment. We are very excited. We are also coordinating his first treatment with his next eye exam (so the eye doc can check his eyes out while he is under anesthesia). Everything is coming together so well!

Next post will probably be post-first treatment. Wish us luck!

Port Wine Stain Resources

During all of our research we have stumbled upon some very helpful and supportive resources in regards to Port Wine Stains. We thought we'd compile them here to help other families going through the same thing, or for anyone else who is interested.

Vascular Birthmarks Foundation: http://birthmark.org/

The leading not-for-profit in the world for children and adults affected by hemangiomas, port wine stains, Sturge-Weber Syndrome, Klippel Trenaunay Syndrome, and other vascular malformations and syndromes.

Things that we found helpful about the website include up to date research, comments from experts, how to navigate health insurance coverage, and access to forums of families going through the same thing as us.

KidsHealth from Nemours: http://kidshealth.org/parent/medical/heart/port_wine_stains.html

KidsHealth is a website that combines health information for parents, kids and teens that is free of medical jargon. As part of The Nemours Foundations's Center for Children's Health Media, KidsHealth also provides families with perspective, advice, and comfort about a wide range of physical, emotional, and behavioral issues that affect children and teens.

From the link above you can go to a page that is designed for kids. It has a lovely story about a boy Evan who was born with a Port Wine Stain. When he was young, he asked his mom why there were no children's books with kids with birthmarks. They couldn't figure out why - so they wrote and published one! Its called "Buddy Booby's Birthmark." We just ordered it and can't wait to read it to Enler!

Medline Plus: http://www.nlm.nih.gov/medlineplus/ency/article/001475.htm

Medline Plus is a service of the U.S. National Library of Medicine and the National Institutes of Health. Here you can find all the facts about Port Wine Stains and lots of helpful links.

You Tube Videos:

There are many beautiful videos compiled by families and kids themselves affected by port wine stains. Here are a few of our favorite:

Port Wine Stain: A Documentary - by Dakota

http://www.youtube.com/user/365Dakota

Calley's story

http://www.youtube.com/watch?v=no9vF8douq0&feature=related

Aiden's story

http://www.youtube.com/watch?v=oty5h12DMCQ&feature=related

This is all we have so far! We'll update as we find more resources. :)

Here's a recent pic of our little guy playing with paint at school.