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!