Round Three: Jude vs. Pulse Dye Laser

So here we are again. Jude went in for his 3rd laser treatment for his Port Wine Stain. He did really well and is recovering in usual form, so happy.

This time the doctor went deeper by increasing the frequency of the laser. I also got to take Jude into the Operating Room and watch him go under general anesthesia. Usually I hand him to a nurse and they take him in. I was grateful that I could go in but it was REALLY hard seeing him go under. He fought it so hard and kept looking at me to help him and then he just was out but his eyes were still cracked looking at me. I nearly broke out into tears and grabbed him from the operating table but the nurse rushed me out as soon he was out so they could get started. Its always really hard for him once he wakes up and he sobs the whole time he is in recovery. The funny thing is that the second we walk out of the room he stops and is fine. The nurse kept asking us if we thought he was in pain or if he was just mad, we knew he was just mad, irate! He was fine the rest of the day, a little groggy but always the happy Jude!

night before surgery

Just Jude Recovering

Jude is doing well. We are less scared about going out in public with this past treatment. We don't mind the stares. We know he doesn't look like this all the time. People are either overly nice or they ignore it. Whatever, we just love Jude. Although, he does notice his PWS now in the mirror because of how purple it is.

DAY 2

DAY 3

w/ Mom @ Naartjie


DAY 4

Jude's favorite person LANDON

Round Two: Jude vs. Pulse Dye Laser

Well here we are again, the worst is over. We had Jude's 2nd laser treatment this morning and it went well. Poor little Judakins had no idea what was going on. Even though he was on a 12 hour fast the little guy was so happy. He was smiley even when I handed him off to the anaesthesiologist. He got a little nervous when all the nurses and doctors were walking in and out of the room, but he remained our smiley Jude.

While we were in the waiting room and my nerves were out of control, a baby girl came in the room with a PWS on her face. It covered her right forehead, eyelid, and part of her nose. She was a darling little girl but it made me grateful for where Jude's birthmark is and that he is a boy. Although this is hard for us and Jude, I am sure or at least hopeful that he will be thankful we did this for him at such a young age. I think that is what gets me through these times. I am grateful OVERALL that this all the problem that Jude has, I know how much worse it could be.

As I said the procedure went really well. Dr. Vanderhooft saw progress and said she was going to raise the intensity of the laser. She thought his storkbite was pretty much gone, but with one last treatment it would be a thing of the past. Jude woke up really upset and kind of delirious. They had to put a tube down his throat and you could tell that his throat was hurting. Grandpa Rog was there and it was funny because when Jude saw him after the surgery you could tell he was sad because he was in too much pain to play but wanted to play. He LOVES to play with Grandpa, but not today. In recovery he cried pretty much the whole time and only wanted me (which is comforting to me). As soon as we left the operating room area he was fine. He slept the entire afternoon and woke up eager to play and eat.

I will keep on updating the blog with Jude's progress. Thank you for all the love and support you give our little Jude.

Starting to Fade: Day 4

GI JUDE

Day 2 Day 2 Day 2

Don't you even worry, Jude remains the happiest (and cutest) boy in the world.

Support Systems

It is in time like these that you realize the importance of support systems. I am so grateful to live close so to mine. Last night it was like Jude's birth all over again, he had visitors all night. We all sat around and were entertained by Judakins. Jude is so loved and last night he was so happy to have people around, he knew he was the center of attention. I have received so many calls and messages in regards to Jude's well being and it is so comforting. I do not know what we would do without our support system. They make times like these seem so much easier.

Round One: Jude vs. Pulse Dye Laser

My heart is officially broken, today we went in again for Jude's 1st "real" laser treatment and it was awful. Jude did really good and the surgery went perfect but it was so hard for us. It has been an emotional rollercoaster for me and Trevan. We know we are doing the best thing for him but we find ourselves asking "Why Jude?", he is so amazing and innocent. Yet, in the midst of turmoil for my family and their reproductive issues we are just glad we have Jude and know that it could be so much worse.

We had to be at the hospital at 7:30 this morning so Jude could get prepped for surgery at 9:00. He was so sweet and happy this morning and had no idea what he was in for. My Mom, Terri, and Rog were there for support and we really needed it. I am well read on Port Wine Stains and their treatment but I don't think you can ever be prepared for how bad it looks (and it does look worse than it is). He was only in surgery for about 35 minutes and was under GA so he didn't feel anything. We decided with Dr. Vanderhooft's suggestion to also laser Jude's "stork-bites" on his eyes and forehead. The "stork-bites" typically fade but she noticed they haven't faded yet and sometimes when they are in relation to PWS they sometimes don't fade. So that is also why it looks worse, his eye is swollen from the metal shield they put underneath his eyelid so his eye would not be in danger of being lasered.

After the surgery Trevan and I were able to be in recovery with him and he was really freaked out after waking up from GA but was extra cuddly which is a plus for us. The nurses were so wonderful and helpful and couldn't get over how cute and sweet Jude was. After he was done being monitored they discharged him and we got to take him home. They put him on some Lortab so he is still really loopy but is doing well. He moans a lot because I think he is in pain but we just hold him and continue to give him Tylenol and Motrin.

I will continue to update with Jude's healing progression. It will look worse before it will get better but at least we know what to expect. Thank you to everyone for your thoughts and prayers. I know Jude feels the love that everyone has for him.

Laser Treatment Update

DAY THREE

Nap Time = Car Seat

DAY FIVE

DAY SEVEN

Jude's First Laser Treatment

A lot of you already know but for those of you who don't Jude was born with a Port Wine Stain birthmark. It is on his chin, neck, cheek, and the top of his chest. Port Wine Stains are VERY rare and happen in about 2 of every 1000 births. There is no known cause for Port Wine Stain's and they can sometimes be very dangerous. We are very fortunate because of the location of Jude's PWS and as of now there are known dangers to his birthmark. Although Jude's birthmark is faint and only pinkish/red now if we were not to seek treatment it would become a very dark purple (hence the name Port Wine Stain) and it can also possibly thicken and grow blebs that are something like blood filled warts. A Port Wine Stain is defined as a vascular malformation and is a mass of dilated capillaries.

Treatment consists of using a Pulse Dye Laser that is shot onto the birthmark and breaks up the blood vessels under the skin. The treatment yesterday was for test patches so Dr. Vanderhooft could see how Jude’s birthmark would respond. We will go in again in May for a complete treatment that will cover his entire birthmark. We will continue to have a treatment every 3 months until the Doctor sees the fading she is hoping for. This could mean anywhere from 4 to 20 treatments, probably being done when Jude is close to 3 or 4. We are told that the procedure is not too painful something like a rubber band slapping against your skin and afterward it feels like a bad sunburn.

We started treatment yesterday at the University of Utah Hospital and below are pictures after his surgery. It looks worse (more painful) than it is and Jude is doing great, he acts as if nothing has happened. I will continue to post pictures of his progress and it will only stay dark like this until the bruising ceases (about 1-2 weeks). If you have any questions or comments feel free to contact either me or Trevan, we are both becoming experts on it. For more information about PWS click on the Port Wine Stain Information tab to the right.

DAY ONE

DAY TWO