Evi's Birthmark: 1st Appointment in Arkansas {Venous Malformation}

On August 12th, Evi had her first appointment in Arkansas.  We drove up on Sunday and Evi did much better in the car than I expected.  We stayed in a less than ideal hotel and I was just feeling anxious about the whole trip.

Then we walked into Arkansas Children's Hospital and I instantly felt better.  Up on the Vascular Anomaly floor, I met another mom whose little girl had a birthmark (different than Evi's) that was being treated with the laser dye.  She and I bonded quickly and it was so nice to find someone in our same boat.

We were called back quickly and met with Dr. Richter's resident.  He came in and asked us a bunch of new questions.  It was exciting to feel like we were finally where we were supposed to be!

A few minutes later, Dr. Richter came in and introduced himself.  He asked if Evi would come to him and she did.  She immediately snuggled up to him and it made me feel so good to see her so comfortable with him!  He loved it too saying that he and his wife were trying for their third baby and how sweet and cute Evi was.  It was nice that he was so hands on and I just immediately felt comfortable.

He even made a little joke saying "So your daughter... she has a birthmark."  We both laughed and then he immediately moved on asking me how our journey to him had started.  After looking at her, he said she not only had a venous malformation, but also a capillary malformation.  The treatment is the same, but he wanted to make sure I knew exactly what Evi had which I appreciated.

We next talked a bit about the laser treatment itself and at one point, he turned towards his resident and said "Don't expect all the parents to be as informed as she is!"  Ha!  I have definitely done my research and I thought it was funny that it was so obvious.

He mentioned scheduling the first treatment and I asked how many he thought we could get in since we've met our deductible for the year.  Once he found that out, he said he'd have his secretary to schedule us for 3 treatments and that if we didn't need the 3rd we could always cancel it.

I would love for it to only need 2 initial treatments and really I was expecting at least 3 so I'm good with that as well.  Unfortunately, he said that sometimes their are hidden malformations that we can't currently see until the more superficial ones are gone.  So we'll see how many she'll need.  I'm hoping after the first treatment we'll have a better idea.

Probably the most substansial information to come from this meeting is that if we don't treat her birthmark, she will have bleeding issues later that could also cause deformities.  It completely confirmed  that we were making the right decision and I was so thankful for that!  In the back of my head, I have always been a little hesitant about the treatments even though I felt mostly at peace about them.  I just hated making the decision for Evi even if I knew it was better for us to do the treatments when she was young versus waiting long enough for her to decide for herself.  Now I know that these treatments truly are medically necessary and they aren't just cosmetic.  So thankful God answered my prayers concerning that.

We leave soon for E's first treatment and I'm mix of emotions.  I can't imagine her without her birthmark.  She's had it for 16 months.  I've never seen her without it.  It's such a part of her and I love it.  How can I be so excited about something that also makes me so sad?  I know that the first treatment won't take it away completely so I'm hoping that the gradual approach to it being gone will help ease me into this.

And so the journey continues...

Evi's Birthmark: Dr. Glade {Hemangioma? Stork Bite? Port Wine Stain? Venous Malformation}

So on June 27th, I took Evi to see an ENT named Dr. Robert Glade.  Walking into the Children's Hospital, I was flooded with perspective.  Knowing that many families walk in the doors I was walking in with kids who may never leave was overwhelmingly humbling.  It was just what I needed to calm my anxiety about the appointment and leave me so grateful for my healthy baby girl!

Once the nurse called us back to the exam room, she let us know that Dr. Glade's resident would come in first and then Dr. Glade would come in afterwards.  Sure enough, the resident came in and asked us the 2 most frequently asked questions we've gotten: Is the birthmark changing in size?  Is the birthmark changing in color?  I answered him honestly and showed him the two pictures I had brought with me.  One when she was 1 month old and another when she was 6 months.  I figured between those two and her in front of them at 13 months old that they would have a good idea of whether it was changing.

He then asked if we had used a topical cream that I knew was sometimes used on hemangiomas.  As he left, I was filled with disappointment.  I could tell that he thought it was a hemangioma and whether it was mother's intuition or something else, I just really did not think it was a hemangioma.  I just sat there praying for wisdom for Dr. Glade and for myself.... I was just so desiring a clear answer and was fearing at this point that we would be on a search for multiple other opinions.

Finally, Dr. Glade comes in and asks the 2 usual questions.  I had him look at the pictures and he instantly says he doesn't think it has changed.  I was so happy to hear this because I didn't really think it had either, but couldn't be sure since Evi was growing so much and on certain days when her face was more flushed, the birthmark did seem a bit darker.

He then asked me if it changed when I laid her down.  I was SOOOO embarrassed because I wasn't sure.  I have been with Evi every single day for the last 13 months and I had never noticed if it changed when she was lying down.  I felt awful that I couldn't answer such a simple question.  He then asked if it changed when she cried and I could instantly answer Yes to that one.  I started to lay her down in my lap since it was still bothering me that I couldn't tell him if it changed and he instantly got excited and said "Yes, let's experiment!"

As I laid her back, she started to fuss which was perfect since he could see her cry as well.  He immediately started talking a million miles an hour in a super excited voice and it was hilarious to watch his residents (he brought in another one along with the one who had questioned us before) try frantically to keep up with him.  Most of it was medical speak so I couldn't tell exactly what all he was saying, but I could tell that he was confident in what it was which was so fun!

Dr. Glade then stops and looks at me and says "Okay, let's talk about what this is first and then what our options are!"  I laughed and said "Great!"  So he begins to tell me that Evi's birthmark is a venous malformation and even shows me why it isn't a hemangioma.  Basically the way the blood flows to it makes it a venous malformation which could clearly be seen when we changed Evi's positioning.  He also pushed on it and you could see how that changed it.  He told me to discourage her from playing woodwind instrumentss and to elevate one end of her mattress.  I'm literally flabbergasted by this point. I'm totally soaking every word in.  After not knowing for so long, I'm just completely in awe of all of these details.  I pushed him to clarify and asked if he thought it would go away on its own and he immediately said no.  I was so thankful for this.  Finally, we were getting a confident opinion.

He also asks if the only one is on her cheek because often there are more.  I tell him there's only that one and he asks if he can examine the inside of her mouth as well since sometimes there are ones inside as well as outside.  Her mouth checks out fine so he begins to tell me our treatment options.

Basically, he has the red laser so he said he would be thrilled to work on the red for us, but that Oklahoma doesn't have a purple laser and mentions that Arkansas does.  I ask him if we travelled to Arkansas if they would be able to take care of both the red and purple at the same time and he says that they would.  And thankfully, he adds that if it was his child, he would definitely go to Arkansas.  I always like hearing that from doctors.  It's nice to have that perspective.  Since Evi's birthmark is mostly purple, it simply doesn't make sense for us not to be referred even though I would have loved to have stayed with Dr. Glade.

I kept thanking him over and over for a proper diagnosis and he acted a bit surprised.  I don't think doctors always realize how stressful it can be to not have definitive answers since they often know who to ask to get the answers they need.  Dr. Glade said he was so glad to help and that honestly he wasn't surprised that no one could diagnose it for us because of how rare the type of birthmark is.  He continued to answer a few other questions I had about treatments.  I was a little disappointed to find out that she will need maintenance treatments for the rest of her life even after the initial treatments to remove it, but at the same time just thankful that it was treatable.  He also told me that in his experience insurance will cover the treatments which was a huge surprise to me!  I honestly just wanted to sit and talk to him forever, but finally ran out of questions and I could only thank him so many times! =)

As I was walking out, I could hear him and his residents talking about Evi.  It was clear that this was a prime teaching moment for them and that it had totally made their day to see something out of the usual!  It made me smile.

That was a few weeks ago and I can't even explain the differences in my heart.  It is amazing to look up "venous malformation" and read more about it.  It's wonderful to finally be able to be fully educated on my daughter and to find more and more confirmation on her birthmark through the Internet.  What had once brought me such anxiety now fills me with fascination.  I watch Evi's birthmark constantly.  Loving how I can see it change just a bit ever time she lays down or cries or presses on her cheek.  Honestly, I know I am going to miss it once it is gone and yet I left Dr. Glade's office completely confident in the decision to remove it.  It is a great place to be!

So off to Arkansas we go....  More to come.

Evi's Birthmark: Year One {Hemangioma? Stork Bite? Port Wine Stain?}

I know only 2 people read my blog, but I would love for someone to stumble upon it who is struggling to diagnose their child's birthmark.  Last week, we went to a specialist for Evi and finally have answers.  I can't even begin to tell you how excited that makes me!  In an effort to document the whole entire process I'm going to make this post the background of all that has happened in the last year.  Some of this has already made its way onto the blog in other posts, but I want to try to keep all the info together so that it'll be easier to find and hopefully help someone else who might be going through something similiar.

                            

As soon as Evi was born, I noticed a mark on her right cheek and under her right eye.  The redness of her newborn skin made it difficult to really tell what it was, but I definitely saw it immediately.  None of the nurses seemed too worried about it and I knew my pediatrician would stop by at some point that day so I was hoping to see what he thought.  Honestly, I was assuming it was just birth trauma.  Maybe a bruise or something.  It didn't protrude from the skin... more of a mass of blood vessels just under the surface.  I had seen birthmarks before and this didn't immediately seem to be that.

Around six, my pediatrician came by and said he didn't think it was a bruise or from birth, but did think it was maybe a stork bite.  He said we'd watch it, but didn't seem alarmed whatsoever.  After he left, I began to google stork bites, birthmarks, etc.  I hadn't slept in over 48 hours and was emotional and hormonal and the last thing I should've been doing was searching the Internet for a diagnosis.  The things I read in those hours and over the next few weeks were horrific.  I read all about how birthmarks could be a sign of serious health issues and totally freaked myself out.

In the first week of Evi's life, I saw her main pediatrician, the PA, and the other pediatrician in the clinic.  All of them throwing out stork bite and hemangioma as a possible diagnosis.  I also talked to one of my best friends (Lauren) who happens to be a pediatrician and again heard the same terms.  The problem is that even though I've never been to medical school, I didn't think any of what I was reading or pictures I was seeing online about stork bites and hemangiomas resembled Evi's birthmark.  I also began to realize that hemangioma is sort of a broad umbrella term that many birthmarks fall under so I was left with lots of questions still as well as all sorts of anxiety.  Even though no one thought this birthmark was one to be concerned with, no one could with certainty diagnose it which did little to ease my fears.

At my six week postpartum visit to my OB, I broke down and told her that I was feeling overly paranoid about Evi's health particularly about her birthmark.  She  assured me that Evi's birthmark was something that could easily be removed with a laser and because I have such a close relationship with her, some of my fears were alleviated.  She also thought I was dealing with some postpartum anxiety and cautioned me to call her if I felt it was getting out-of-control. Because I was nursing, she was relunctant to put me on medicine for my anxiety because the meds would keep the baby from sleeping which would then sleep deprive me even more and potentially only heighten my anxiety from being sleep deprived instead of helping it.

As the months went on, I waivered between thinking Evi's birthmark was changing and admitting that I didn't think it was.  One thing that made it rather difficult to monitor was the fact that Evi was growing rather rapidly as babies do.... obviously as her face was growing, the birthmark was bound to look a little different even if it wasn't actually changing.

                              

At Evi's six month appointment, Dr. K again asked me if I thought it was growing, getting darker, etc.  I told him honestly that I thought it might be, but only because I knew that if it was changing that it was more than likely going to go away on its own.  I was too educated and was having a difficult time knowing what the reality was.  This appointment was a big changing point for me because Dr. K mentioned that he would refer us to an ENT in town if we didn't notice a significant change over the next few months.  He assured me that even though sending us to an ENT seemed unusual that this ENT had studied under the doctor who helped pioneer laser dye therapy.  I left this appointment with hope that answers were around the corner.

At some point, I happened to run into a friend of mine from college who had just moved back to Oklahoma and was a dermatologist.  In the middle of BabyGap, I showed her Evi's cheek and asked for her opinion.  She immediately said hemangioma and that it should go away on its own.  I asked her when she thought it should go away and she said probably by the time she was TEN!  I had read that they usually resolved before then so I was a bit discouraged.  Granted, she was fresh out of dermatology school and in the middle of trying to shop, but I wasn't too excited with her answer! =)

In the months leading up to Evi's one year appointment, Devin and I talked about what to do.  We hated to remove something that would go away on its own, but the problem with waiting is that if the birthmark didn't go away on its own, it might be more difficult to remove the older she was and well, also kids could be mean and we hated to subject her to that if we could have done something sooner.  We also struggled with the fact that we think Evi is absolutely beautiful and didn't want removing it to insinuate otherwise.  As we talked, we decided that we needed more answers so that we could make an informed decision and were also encouraged by Lauren to go ahead an get the referral to a specialist at Evi's one year appointment.  She agreed that there was no reason to wait and that even if we only confirmed that it would go away on its own, we would have more information on when that might be and what our options would be if it didn't.  I really appreciated having a friend who could give us both personal and professional advice!

Evi's one year appointment was scheduled on her birthday, but unfortunately, our pediatrician ended up taking vacation during that week and though we could have seen another doctor in the practice, I really wanted to see Dr. K to get the referral so her appointment was delayed two additional weeks.  Torture for me who was dying to get this whole process started.

Finally, her appointment with Dr. K arrived and as we talked about her birthmark, I could tell he was leaning towards just watching it for a few more months.  I quickly asked him if we could be referred to which he said "Of course!  I will get you Dr. Glade's information and just let us know if they need anything from us in order to get an appointment."  I was so thankful that he realized how important it was to me and agreed that we should go ahead and meet with Dr. Glade.

I literally called Dr. Glade's office from the parking lot of Dr. K's office.  Unfortunately, his first opening wasn't for another six weeks, but I was ecstatic to have an appointment.

At this point, in the course of Evi's first year, I had talked with 6 medical professionals who all diagnosed it as a hemangioma.  It was not.  Facial lesions are fairly difficult to diagnose and as I recently discovered, only 10% of all babies are born with a vascular birthmark and out of those 90% of them are typically a hemangioma of some sort.  Obviously, this is why I heard this diagnosis repeatedly throughout the first year.  Thankfully, we were close to finding out what it really was!  Next up, our appointment with Dr. Glade!

(I'm going to try to dig through more pics and do a post just on that since some pictures show her birthmark more prominently than others do.)