Thursday, October 15, 2009

Our 2nd level 2 Ultrasound

Dear Lily,

I am back from picking Abbi up from school. She was SO excited to see the pictures of you. They gave us so many, and she and I both think you look like her:) You have her top lip that sticks out just a little...like a little duck:) You have her little nose. Already you are trying to suck your thumb. You moved around tons during the ultrasound. You opened and closed your mouth, tried to play with your toes...you were head down last time, breech today. You have lots of time to turn back to head down.

Our sonographer today was the same as the last time. She was very educated and articulate. We had a million questions, and she happily answered them all. Your heart was already much bigger, making it easier to get a better picture of what is going on. She looked at every valve, vein, leaflet, chamber, the blood flow, she dopplered every part of the heart. She got an excellent picture of the pulmonary vein and dopplered it- 5 years ago this technology wasn't even available. To think that you can look at a particular tiny vein and listen to the blood flow from it is amazing to me.

She explained quite a bit...for instance, last u/s there was an echogenic bowel (a bright spot on the bowels) but today she didn't see one. Your kidneys are still a bit enlarged. She said sometimes babies just have full kidneys every time they are sonogrammed, the important thing is that they don't keep getting bigger each time. This would mean they are retaining fluid, instead of emptying out regularly. She spent most of the time on your heart, explaining everything as she went.

Here is the good news- your ventricular septum is fully formed. On the diagram in my previous post, the septum is not formed, and there is a large amount of blood flowing from chamber to chamber. The leaflets of your heart are formed, and functioning well.

Side note- I didn't even know hearts had leaflets until 3 weeks ago. You are forcing me to get educated already, Baby Lily;)

The chambers and ventricles of your heart are formed..the veins are all pointing in the right direction..the heart is pumping blood well, and for the most part looks well formed.

The area of concern is the teeny, tiny area of the septum (wall) that joins the upper chambers of the heart (atria) and the lower chambers (ventricles). In a complete av canal. there is a large hole, the septum is not fully formed, and often the leaflets are not fully formed...meaning major and immediate heart surgery after birth. Since these areas look fine right now, we are almost sure you do not need this immediate surgery. What we can't see, is how that little area at the end of the septum is formed. You are sooo small, and the heart is so small, and all of this "looking" is done through the wall of my uterus, skin, etc...and you are moving!! Which makes this whole process a bit tricky.


The doctor came in to do his own scan...and WHAT a difference between the doctor 3 weeks ago and today. Daddy said from the moment he walked in he could tell he was different. He looks about 6'3" and like a giant teddy bear...and he acts like one:) If you had to have a doctor give you unpleasant news, this would be the doctor you would want. He introduced himself and said he was my little doctor, and I said well I am your BIG patient. He laughed and said, yeah, all one hundred pounds of you. He was smiling and friendly, and positive. Thank you GOD, because I have been praying for 3 weeks for a better doctor.


The doctor started the scan, and explained that the line-up of the valves is what is giving them cause for concern. Normally on a u/s the valves don't all line up- they are staggered, like in a zig-zag pattern. Your valves are all "lining up" - which typically means there is a "canal", or hole somewhere. The problem is not that the doctor can see a hole, but that he can see the valves
lining up. A tiny hole would not mean a problem right now. The sonographer explained that your heart functions differently in the womb, than when you are in the real world, breathing in oxygen. In the womb the pressure of the blood flow in the chambers of the heart is 1 to 1, meaning equal pressure. After birth, the pressure changes to 2 to 1...so even a tiny hole under that pressure would allow blood to be forced through. (remember in a previous post the diagrams showed how blood flowing into and out of the heart should be separate.)


Soooo....the question is- is there a canal there, and if so, how big is it?

The doctor told us he would like us to come back on November 4th. There is a heart specialist from OHSU in Portland named Mary Rice (I like her already:)) and her husband is a sonographer. They are the best specialists in the area, very experienced in diagnosing these type of defects, and they will be able to tell us what exactly is going on. They only go to Eugene once a month, so that's why we have to wait.

We asked the doctor many questions about surgery. My main concern has been how soon the surgery might be. Of course, I am hoping you will not need ANY surgery- but if you do have to have it, I would rather not have you delivered and then whisked off to open heart surgery! The doctor said given what he is seeing today, that does not look like a possibility. He is not seeing a major defect that would be life threatening after you are born. Thank God!!

He said if there is a defect, we will most likely be able to wait until you are 6 months old for surgery. AND there are some people who have a very tiny hole that does not present problems, that never requires surgery. Some people can live with a small defect, that would just sound like a heart murmur, but not have complications.

All this made Mommy and Daddy VERY relieved. I want to be able to hold you right away!!

Next I started asking questions about Down syndrome. The reason there is concern, is that 1 out of 3 babies born with an av canal has Down syndrome. So it is a pretty "strong" marker.

I asked the doctor about other markers...the echogenic focus on the bowel which was there last week (and a soft marker- meaning not as strong- for downs) is not there. However, your kidneys are slightly enlarged...soft marker...your nasal bone is measuring a little small..another marker...and your femur bones are measuring a little small...another marker.

The doctor said that all these "markers" are only that- they are not evidence, just possible indicators. He said the heart defect trumps them all- we might not be as concerned with all the small stuff if the big one wasn't there.

I told him we are totally fine with whoever you are.

And it's true.

I am not in a rush to know, to have an amnio and put you at risk for "management" purposes. I am completely, totally in love with you already, and no "diagnosis" can ever change that. 46 chromosomes or 47- you are mine, and you are a gift from God, and I really don't care!


The kind, smiling, teddy-bear-of-a-doctor looked at me and said "Your baby is just fine," and I knew we were going to be okay. Down syndrome or not, heart defect or not, you are going to be fine. This is fixable, this is not the nightmare of not knowing if my baby is going to have food or water, this is not giving birth in a nation where every day is a fight for survival, this is a tiny thing that is not too big for God. I can do all things through Christ, who strengthens me.

Daddy and Josiah and Mackenzie and I left confident that we can handle whatever the future holds, thanks to our awesome God. I am soooooooooo thankful to all our friends and family who have been praying- I really really believe it is those prayers that are helping us go through this. I am feeling a total peace about you, Lily- I don't know if that means you don't have any chromosomal or heart issues- or if it means you do, and God is just giving me the grace to deal with it. I just know I feel very safe in the protection of God, I feel tremendous grace over our lives.

And I'm NOT stressing. What a miracle!!! See how much you're teaching me already, Baby Lily?

I have dinner to make, and loads of laundry...I will write more later, but for now, you are Mommy's beautiful princess, and you have a whole crowd of waiting fans ready to spoil you crazy:)

Love always,

Mama oxox

2 comments:

CMAC Refugee Advocate said...

Patti - Thank you for sharing all this. I will pray for you and Lily. YOU really should have been a doctor. YOU are an incredibly smart woman. Quite amazing how you've been able to remember all and put into words. BUT as we know God wanted you to be a mom instead. AND what an incredible one you are and will be to Lily.

We love you guys. christina.

CKopp said...

I'm gonna make a prediction: a normal Rice Kid (as normal as they get over there). Its silly, its like a "due date," based on a measurement? Are you kidding me, they never get that right? This is all these doctors do - and they can't get it right? Its not like the doctor says, "Well I'm upping your due date, I was wrong because I've been spending alot of time focusing on my elbow surgeries lately." They don't do elbows anymore, an elbow specialist (ES) does! These clowns just do baby births! Think of the doctor on Little House on the Prairie - that guy had to do ears's, noses, throats, babies, headwounds, and deliver baby horses - ALL WITHOUT AN ULTRASOUND!!! So next time you talk to you "doctor" - ask him, "How would YOU get a softball out of Mr. Edwards throat?....I didn't think so!" and leave.