10 June 2010

updates, updates

Time flies 
Somehow it seems much longer than three weeks ago that we found out about Ewan's heart. In many ways, it seems that we've traveled a million miles in the space of those weeks, and have cycled through more emotions than I knew existed.

But when I look at the calendar, it is in fact three weeks and a day since the initial diagnosis, and just over a week since having it confirmed by a pediatric cardiologist.

I haven't gone into any detail about the diagnosis for a lot of reasons, but mainly because it's been difficult to talk about or write about without ending up in a weepy mess. Another part of it is because as Ewan grows and the doctors see more, the diagnosis might vary by degrees, and we want to minimize our confusion (as well as yours) insofar as that is possible.

The current diagnosis
But now I think it's time to let you know what we're dealing with. This will help you understand what we're facing and if you're a praying person, to pray more specifically. The condition initially suspected and later confirmed by the pediatric cardiologist is called Tetralogy of Fallot. It is a rare congenital heart defect that consists of a combination of four defects in the heart:
Ventricular-Septal Defect: This means there is a large hole between the right and left ventricles of the heart. This creates a situation where oxygen-poor blood is mixing with the oxygen rich blood.

Pulmonary Stenosis: A narrowing of the pulmonary valve. The pulmonary artery's function is to carry blood away from the heart and to the lungs to be oxygenated. In a normal heart, the aorta and pulmonary artery are the same size. In Ewan's heart, they had difficulty even finding the pulmonary artery on the first ultrasound. The fetal echo at 22 weeks showed a very small pulmonary artery.

Right Ventricular Hypertrophy: A thickened right ventricle. The right ventricle wall is thickened because it has to work extra hard to get blood through the pulmonary artery.

Overriding Aorta: In a normal heart, the aorta leaves the heart from the left ventricle. With an overriding aorta, the aorta is leaving the heart from right over the ventricular septal defect.

You can read a little more about Tetralogy of Fallot and its treatment here from the Seattle Children's Hospital website. It is a short page, but does a good job of explaining things without overloading you with information or medical jargon. We will have at least one more echo before Ewan is born so they can get as good a look as they can at anything that might have changed, but right after his birth is when the cardiology team at Children's will have the chance to assess the extent of the condition and develop a battle plan.

Our plan, or what there is of it
We had an excellent meeting with our midwife this past Tuesday. I was anxious and tearful, so sure that this would be our last time seeing them. For the first half of my pregnancy, I was looking forward to giving birth in their birth center. But given the diagnosis, I was under no illusions about Ewan needing to be born in a hospital. During our time together, she did an amazing job of reassuring us about how fortunate that we are in our close proximity to Children's Hospital in Seattle.

She also provided the assurance that this did not mean we had to give up on the kind of birth we wanted. Wanting to make things as easy on us as possible, we decided to schedule our next prenatal appointment there. In the time being, she is going to pull on some of her resources to see who some good candidates for our doctor might be. This was a load off my mind, as I didn't know where to begin and given our already stressful circumstances, didn't want to have an argument with my doctor about having sought the care of midwives for my pregnancy.

Based on our understanding, there are some restrictions as to where we can deliver (having to do with the neo-natal services available at these hospitals) and the provider to whom the midwives would normally refer us (without hesitation) has privileges at a different hospital in the area, and we aren't sure if they have those resources available. We expect to hear in the next week or two so we can begin interviewing doctors and find the right person to round out our prenatal care and delivery team.

I can't tell you how reassuring it was, not only to be assured of the skill of the specialists and surgeons at Children's here in Seattle, and the ability still to have the kind of positive birth experience I want, but also to have our emotional responses to this experience validated. For the first time since this all started happening, I said out loud THIS ISN'T FAIR. She may have even said it before I did. Even though it doesn't change a thing, even though we had been assured multiple times this was not anyone's fault, it was incredibly cathartic to say it and to have it affirmed. I could cry openly and instead of looking down at a chart, she came closer to us, handed me a box of tissues, and put her hand on me. When I told her about how offended I was at how quickly references to our child went from "your baby" to "the fetus", and how many times "terminating the pregnancy" was mentioned, she affirmed it: No. This is your baby. This is your bean. You are already a mother. This has so much to do with why I adore this team of midwives.

In other news, we've also contracted a doula. We love her already! Annie is going to be a tremendous asset to both James and I. Before we had even officially signed a contract with her, she was offering us solace and reassurance, and offering a practical level of support that I just didn't know existed for expectant parents. If we want, she will go to appointments or tests with us -- whatever we need. She's just a phone call away.

So, that's about where we're at right now: waiting, but moving forward. While far from ideal, we are in a very good place all things considered.

Questions
We have gotten a few questions about all this that I thought I would answer here.

Do you need to have a C-section?
At this point, there is no reason to expect that I won't be able to labor and deliver as normal and have the natural, vaginal birth I want. We aren't sure how much monitoring will be necessary during labor. As long as Ewan is receiving his support from the placenta, he's doing just fine from a growth standpoint and in every other respect (especially a kicking standpoint, let me tell you). We are also very fortunate in that no other defects are visible -- fingers, toes, eyes, nose, mouth, spine, and all other major organs are looking just as they should. And even with a defect, he still has a healthy heart rate -- at our visit two days ago, his heart rate was in the 140s.Way to go, Ewan!


What's going to happen once he's born?
Once Ewan is delivered and is no longer receiving his support from the placenta, he's going to need to receive a medicine almost immediately that will keep the PDA open (this is a vessel that is open when the baby is in utero and normally closes a few days after birth). This will allow help ensure that the blood can flow as normally as possible, giving the doctors a chance to get the assessment of his heart that they need and develop a plan for his treatment. We've been told to expect a series of operations, the first occurring within a few days of his birth and extending through early childhood as the heart grows. We've been told to expect that this initial hospital stay will last 4-5 weeks.


What can we do?
Pray. Pray, pray, pray. Your notes of encouragement, even in those moments when you don't know what to say, also do much to bolster and buoy our spirits. We're still looking into the financial end of things, not knowing what our expenses will be. We're looking into all sorts of options in this regard, and have already had offers from people willing to initiate some fundraising if need be. We're also waiting to hear back from the hospital and the insurance company as to what we can expect.

We now have a page on Facebook for those supporting, encouraging, and praying for us. Click on the image below to join Team Ewan. My goodness, this child already has a Facebook page and he's not even out of the uterus yet!
ultrasound1
I've also started a Team Ewan blog that will be totally dedicated to Ewan updates leading up to and after his birth. There will likely be some overlap between lattes & rainy days and this one, so please don't feel the need to check both.

That's about it for now, I suppose. This mama is pretty tired, but know that I send my love and hugs to you. God bless you all!

much love,
mama k

3 comments:

David said...

Kirsten,

Sarah and I have been praying for you guys. Thanks for sharing and we will continue to keep you in prayer.

As I was reading about TOF I found out that two time Olympic Snowboarding Gold Medalist Shaun White also had TOF.

http://sportsillustrated.cnn.com/features/siadventure/29/boarding/

I found the link on Wikipedia, but I was encouraged for you guys after finding this out.

Dave

Jo's Corner said...

Hi Kirsten ~ As I read this update I immediately had this thought...Warrior Ewan!! Oh, your lil' man is gonna continue this battle and be Victorious in the end! All those "kicks" you feel are just a sign of the little boy who will breeze through his surgery and come out fighting to get on with life!

I have a niece named Brynn Claire who was born with Pulmonary Artesia with VSD. (Not sure if that's the correct spelling) Her chances of survival were about 5%. Strangely enough, it was when I was rocking that teeny, tiny baby girl that I realized something was VERY wrong. Her little rosebud lips were BLUE and her tiny little nails were as well. Now being a nurse makes you very aware of those type of things and my sister "heard" me. She called the Pediatrician and got an appt. that day. He listened to her heart and had his nurse call for an ambulance. From our local hospital, she was airlifted to Mayo Clinic.

Without a doubt, I know that my Brynn has been held in the Pal of Gods Hand! She has had four surgeries...NOT the heart transplant they predicted...and recently she went through a very scary time...for ME, that is! She got her Drivers License!!!!! Yep! She'll be 17 in July!!

So, Please remember that story when times get tough. And, KNOW that HE will Hold your boy in the Palm of His Hand! And, soon (way too soon) Ewan will not need to be Carried. Instead he will run and walk beside the Lord, Holding His hand!

I will be Praying for You and Ewan and Ewan's Daddy, too! And, I'll be checking in on your blogs to see The Rest of The Story!

Love from MN. ~ JO

allie :^) said...

it does help to write it out loud. ;) blogging is cathartic! i am so glad you are keeping record of this journey... :)