02 September 2010

update: about his heart

We had our final fetal echo yesterday. In it, we learned that nothing had really changed, meaning: no miracles, but it isn't any worse.

Words can be plenty descriptive, but some of us are visual learners. So I wanted to show you some diagrams of the heart. The first one, a normal and healthy heart. The second is Ewan's heart (or as close as our doctors can see right now).

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.

Pulmonary Atresia: No pulmonary valve, or the pulmonary valve is sealed. In a normal heart, this is the valve that acts as the doorway between the right ventricle and through the pulmonary artery where it goes to the lungs to get oxygenated. Right now, Ewan's pulmonary artery is much too small to see what the state of this valve is.

There remain enough unknowns at this point that nobody knows yet exactly what the prescribed course of treatment will be. After birth, he will receive a medicine intravenously that will allow pathways that are open in the womb that normally close within a few days of birth to remain open. This will allow for blood flow to the lungs to continue and allow doctors to take additional scans of the heart to determine what the best course of action should be. We are looking at a least a few surgeries over the course of his life: one within a few days of birth, another probably around four months or so. Again, these are just guesses.

In the meantime, he is just fine where he is. I laughed at our birthing class last night when they talked about "kick counts" -- seeing how long it takes to feel ten kicks. In our birthing class, getting to a count of ten took about a minute and a half. He's not consistently that active, but there will be whole days (like yesterday, and like today) where the kicking starts before my 4 am alarm goes off and continues through just about every hour of the day until well after I've gone to bed.

I do think we have a feisty one on our hands, and I'm very glad for that.

In the meantime, I'm doing my best to remain as relaxed as possible. As we linger a little longer in this place where we can only anticipate, I'm having more days where an active imagination gets the better of me -- where I wind up in tears imagining what could happen, as I feel his movements, and just want to keep him inside there where he can be safe.

James continues to look for work, and we continue to run into brick walls in this endeavor (one employer he spoke with called this the worst job market she's seen in 25 years -- honest, but not encouraging). We have no idea what this means for me being on maternity leave -- how much time I'll be able to take, or how exactly we intend to meet our financial obligations for the period of time I am off. We continue to hope and pray and explore options. And periodically, I continue to have those moments where I lose it completely from the stress of it all.

I'm still determining how and where I'll be doing my updating the closer we get, and I'll let you know as soon as I figure out what will work best for us.

Many thanks for loving us through this.


  1. thank you for sharing your life here with us... I'm cheering for you, hoping with you, enjoying your feisty baby with you. He's gonna be so beautiful...

    Will keep praying about the job thing. I cannot imagine.

  2. Oh, Kirsten. All my love to little Ewan, to you, and to your husband during this time.

    I am praying so hard for you all.


  3. The hardest part about the visual is knowing that is Ewan's heart. It sounds so "duh" to say it, but staring at the compared pictures makes it all so much more real.

    It's hard to read all the technical names written on the diagram that describe the different conditions in Ewan's heart. It sounds so technical, so devoid of the life we know this little boy has in spades!

    It was so good to connect for a few minutes with you today. Even though there are no words, there is still presence. I hope to find more ways to offer you presence through this time.

    I love you. I hurt with you. I'm praying with and for you.

    Lord, have mercy.

  4. Thank you for sharing. I know it sounds silly, but it's easier to pray when I know more about what I'm praying for. Be blessed today.

  5. Dear Kirsten, dear Ewan, dear James--Be well. Be well. Be well. All I can say....

  6. Dear Kirsten,

    I'm praying for you and your husband and your son.