Update. Now Danielle is 22 months old.

When Danielle was first diagnosed with PHACE, I scoured the web for blogs and websites about PHACE kids. Some families keep the blogs going during the life of the child, but I noticed that some parents blog about their kids about PHACE until the child is 18 months or so, and then the blog ends. Ended three years ago. And as a new PHACE mommy, I wanted to call out to the screen, "WELL? THEN WHAT?"

So now we are living in THEN WHAT. With Danielle, the hemangioma grew. Then it was hard for her to breathe because it was in her airway. We had a hard winter during cold season.

Then things started to get better.

Then doctors said we didn't need to come back as often.

Then the hemangioma started to involute and colds got easier on Danielle and me and then we started weaning her down on her Propranolol dose at 15 months.

Which didn't work. It was obvious. So then we waited until 18 months. Then she responded well to the taper.

Then our docs in development said her development is perfect---no need to come back.

Then we found a new doc to manage Danielle's neuro care. This doctor has extensive experience with PHACE kids. She says Danielle doesn't need a follow up MRI until . . . oh . . . 2016. DONE DEAL! We switched our care to this new doc and fast!

Opthomology and ENT aren't as concerned as they were: Danielle's breathing is stable and it's obvious the hemangioma isn't causing so much trouble in her airway. Her lazy eye resolved---now we just monitor her astigmatism.

Astigmatism? Are you kidding me? With what we've been through, the fact that she sees well and has an astigmatism doesn't even make my pulse quicken.

So today we saw derm. Derm says we can come back when we're ready for laser. IF we decide that's what we want. I actually like our dermatologist, but I'm happy to send her a yearly Christmas card to say hello.

So what's the rest of the story? In Danielle's case, things were very, very difficult for the first 18 months. We saw a lot of doctors. She had surgery, two hospital stays, two blood transfusions, more scans than I can remember, and many, many medications.

And then.

Things.

Got.

Easier.

Now we are working off the Propranolol. She was taking 2.5 MLS twice a day. Now she's down to .5 MLs once a day. I'm hoping she'll be off meds entirely by 2.

Off meds. What will that be like?

There's really only one regret I have. I regret that we followed up with neurosurgery when we left the hospital when Danielle was two months old. This is what we were instructed to do, but I think someone made the wrong call. In my opinion, we did not need a neurosurgeon. A neurosurgeon wants to know if surgery is necessary and then feels the need to order scans (a CT Angiogram) that have radiation.

A NEUROLOGIST with PHACE experience is what we needed. A neurologist who would look at the scans and know that PHACE kids usually don't need surgical intervention for their vascular issues. And that an MRI is sufficient.

That's my only regret. I think the care team made the wrong call.

So we switched to a neurologist with PHACE experience.

The rest of the story is that we all learned. And Danielle is thriving today. Our PHACE journey isn't over, but the sun is shining today. The path is easier today. Things are getting better today.

At 22 months, Danielle talks up a storm, plays with her brothers, flirts shamelessly, and you'd never, never know what we went through at the start of her little life. If you met her in the park, you'd think she's just a darling little girl with big blue eyes and the longest eyelashes you'd ever seen. You'd notice a little red on her face, and you'd chalk it up to a rash. If you asked, I'd tell you it was a birthmark, and you'd say, "Oh," and then we'd talk about something else.

There may be bumps later in the road. Danielle may have tougher things ahead. I'm not in denial about this. We will take those as we come. We will always have to follow up with more doctors than most people. And I will always worry about the "what ifs" and about the long-term consequences of all the scans and meds she had. Until the hemangioma on her face and lip is all gone, either with time or with laser, I won't be able to ignore it entirely.

But at the same time . . .

I'm glad the THEN WHAT has led us to where we are today. To here.

Because here is a good place to be.

One Year Reflections

I've been finding myself getting really reflective for the past few weeks, celebrating Danielle's birth and heart surgery anniversary. Remembering what it was like to have cardiology, dermatology, neurology, genetics, and everyone in the hospital it seemed, swarm around my little baby in her little place in the NICU. We knew we were slated for heart surgery, I was six days postpartum, and I couldn't understand half of what everyone was telling me. PHACE? What? MRI? Now? On a baby? On MY baby? But we did all the tests . . . we did all the scans . . . my other kids didn't have to do this. Why aren't I home cuddling my baby? Why is she hooked up to all those wires? No one can take better care of my baby than me---that nurse better get over here quick and change this diaper because I can't do it. What do you mean, I can't nurse her? What do you mean, I can only hold her if someone helps me?

What is going on? Hemangioma?

WHAT?

It was such a blur and I was so incapable of comprehending it all.

Then we were in the hospital for weeks and weeks. I was terrified what this all meant for my child. Slowly I started to come alive and learn. Slowly, I found blogs about beautiful PHACE kids and saw their amazing journeys. Through these blogs, I met amazing PHACE parents and learned of their strength. And their humanity. I followed blogs, calling to my husband, "Honey! Come meet this kid! She's SO cute and SO funny. Meet this little guy. He's so tough. What a great kid."

I stalked. These parents didn't know me, but I was inspired by them.

And it makes me wonder if new PHACE parents find my little blog. See my girl. See where we've been and where we're headed. Even if it's just one new set of PHACE parents, and you are scared, it feels good to be able to tell you:

You will make it. Your child is beautiful and strong. You will see. Things will work out. You are not alone.

Happy Birthday Danielle!

A year ago our crazy ride began. I spent a lot of time watching monitors.





Danielle spent a lot of time waiting to wear something other than a diaper and a blanket.








Last year, feeding tube.











This year butternut squash.










I can't believe how far we've come in a year. It makes me glad that Danielle won't remember the details---I hope that she remembers (or knows) how much we loved her right from the start. She won't remember the countless doctors visits, my ceaseless questions, and how hard it was to hear her struggle to breathe. She won't remember how hard it was to get bad news from doctors who were trying to break it to us gently.

Hallelujia that year has past! Now we hear good news from doctors. This past two weeks we've made the rounds and here's what they have said:

ENT: Danielle sounds great! No stridor, hurray! We were able to switch the Propranolol from three times a day to twice a day. I don't have to wake her up in the night. YEAH! Now we'll keep the dose of P that we're on until 18 months and go from there. Best of all, though, we can resume normal activities and be with other kids more now. My boys will be thrilled to play with friends again. Follow up in 3 months.

Cardiology: Everything looks good. Repair looks fine. Blood pressure on extremities is even. Follow up with arch MRI when we do the MRI head/neck in the fall. Follow up with cardiology in 6 months.

Opthomology: Danielle's lenses and sight are developing normally. Our patching has worked and her ambloypia is resolving. Keep patching for 1/2 hour until 2 1/2. Glasses maybe when she starts school---none needed now. Follow up in 4 months.

Dermatology: Hemangioma on face looks lighter, hurray! Let's see how she looks when P. is done and then we'll consider lasering what's left. Follow up in 6 months.

Behavior and development: Danielle is developing right on track. One more big developmental test in 8 months and if she does well, we'll "graduate" from the high risk program and follow up with our pediatrician.

All in all, such good news.



Happy birthday, Lady. You are a miracle to me.

Croup

We are still on the tail end of Danielle's third adventure with croup this season. Her subglottic hemangioma sure makes croup an unwelcome intruder.

Man, I hate croup.

My other two kids would get croupy and sniffly for a few nights, I'd make the shower into a sauna and figure out a way to get them to sleep upright and we'd be OK in no time.

But Danielle is different. I cringe when I hear that barky seal cough because I know what it means. Two weeks or more of breathing treatments with Albuterol, start on the prednisolone, humidify the whole house, up three or four times in the night with a shower/sauna treatment and more Albuterol as I keep a sharp ear out for the change in her breathing---the change from OK to not OK, the change that means I skeedadle right now and get the baby and me into the van. Pronto. That stridor HONK HONK HONK from her breathing and the retracting of her little tummy into her ribcage and I grab my keys and go.

So far, we only landed in the ER the first time. But it's early in the season and I'm not opposed to going back. Anything so my baby can breathe. And, oh, that recimicephinefrine they give her is so, so good. Opens her airway right up. And when the Dexamethose hits, we are are home free.

What bugs me is when people ask how Danielle is and I give them the honest answer: she had croup so we put her on steroids . . . and then they GASP and tell me that REALLY, a baby shouldn't be on steroids. Yes, yes, I try to tell them. I know the risks. I get it.

But she must breathe.

She must breathe.

She must breathe.

She is my baby. I am her momma. My job is to make sure she breathes.

I need to stop talking to those people and keep talking to parents who have kids who need steroids to breathe. Asthma parents, for one, get it.

Yes, steroids in babies, we say. Risky. Not a good option.

But the only option there is.

Breathe baby. Breathe. Get bigger so your airway can grow. Get older so the hemangioma will wear itself out and involute. Start talking so you can tell me when you struggle.

Stay with me, Danielle.

Breathe.

Hemangioma update

When we first were in the hospital with Danielle, and all the -ists were flocking around in the NICU, and then in the CVICU, and then up on the recovery floor, all I could get was a "We'll have to wait and see," when I'd ask about Danielle's hemangioma.

Drove me crazy.

My husband kept telling me I was asking them the same question over and over. I was. He was right. But I asked: what will happen? How will it grow? What will it look like? When/how much will it receed?

They couldn't tell me.

But I wanted to show you where we are now and where we've been.


I truly hope that the H in her airway is fading like the H on her face.

I am learning to be hopeful. I am learning to trust. I am a very stubborn, and I'm learning to channel that appropriately.

The first picture is Danielle in July, on steroids, before we went back on Propranolol. The 2nd is current, now, almost six months later.







Another post I'll show you what's happened with the H. on the left side of her face. I need to take some pictures to accurately show it.

Update on Danielle

We are on a break from seeing doctors. At least, seeing specialists. We still see our pediatrician plenty, but for colds and check-ups and things like that.

The good news, is that most of the news that we get is really good news. Our neurologist says that Danielle has some extra loopies in her left carotid artery in her neck. He did not use the term "extra loopies", but said it in a long term that I don't remember and can't pronounce. But it means extra loopies. Anyway. She has extra loopies, but they shouldn't (we'll hope) cause her any problems. No life restrictions other than no tackle football and no rugby.

OK, Danielle. Work with me on this one.

No rugby.

Got it?

Half

Half the fun of Halloween is the dress up that happens weeks ahead of time.