The Facts About Miss Ollie's Heart

To start, this is going to be a long informational post.  We have a very large family, and live in a very small but wonderful community.  So most people here know us or know multiple members of our family & we have a lot of friends supporting us as well.  This is why we share this on our blog so the people that continually lift us in prayer have the facts straight from us.

Today Jade & I went to Peoria to meet a pediatric cardiologist.  Today I feel was the best appointment we have had thus far.  We got a lot of answers & things fully explained to us in detail.  I feel like for once we know as much as possible right now, and we understand it.  The Dr. was young, but we really liked him.  He took his time and spoke in a language that made sense to us, and he drew the heart so we could fully understand what we're up against.  Tomorrow we still go to St. Louis to meet their team & then we will decide where to go with Ollie, but this is what we learned today.  I'm expecting the news to be quite similar tomorrow in St. Louis.

Ollie's Heart:

Ollie has a Complete Atrio Ventricular Canal Defect:  Balanced.

So what does this mean?  Basically the four chambers of a typical heart are divided into two atriums and two ventricles by the walls of the heart.  Ollie is missing the middle portion of her heart so the four chambers are open to each other.  Below is an image the Dr. gave to us and on the back he drew Ollie's heart.  I went ahead and drew on the front the basics so you could visualize what I mean.  In the center I have made a dotted line - the middle section of this line is missing.  So you can tell there will be a hole in the middle of her heart.  She does have the valves in the center of the heart, but as you can see in the bottom right corner of my image, hers aren't right.  They are right now a common valve, so they will also require some surgery to correct them and make them two separate valves.  The good news is Ollie's heart is balanced, meaning that both sides are growing equally.  This is awesome news, and he doesn't fear that they will become imbalanced which would be bad - he said her heart is completely healthy and looks great besides the defect in the center.  So as far as growth - again great news.  To repair her heart, she will require open heart surgery & they will make one or two patches with gortex (crazy I know), or they will use her Pericardium which is the membrane that covers your heart to fashion her patches.  They will also fix her valves.  They see this defect often and he's confidant it will be corrected.  In the future her valves may leak and she may require an additional surgery, but at this point who knows if that will ever be in our future.

What to expect after Ollie is born:

The doctor wants me to deliver in Peoria - again great news.  Mattoon is a great hospital, but it is not equipped for Ollie & if she would have an issue he said they would immediately ship her to Peoria and we would be separated - so this will stop that from happening which makes me happy.  He said after birth we'll probably stay in the hospital longer than normal to ensure she's eating well, often times babies will need a tube to feed, but we're hoping that's not the case for us.  When Ollie is born he said most likely the first month she'll be fine, that it won't even seem like she has a heart issue.  However, as she grows it will become more apparent.  It will be slowly progressive and with medication they can somewhat help the problems she'll face until we absolutely need surgery.  So we have time.  In a typical heart, one third of your bodies blood is pumped to your lungs (deoxygenated blood), while two thirds of your bodies blood is pumped through your aorta out to the body (oxygenated blood) - hence your blood pressure.  With an AV Canal defect the heart chambers are open to each other so the heart will pump the blood to the path of least resistance - therefore Ollie's heart will pump too much blood to her lungs and not enough to her body.  So Ollie's lungs will receive too much blood, it will make them like heavy sponges and she will kind of heave to breath after awhile.  Her body will not receive enough blood, so her body will be in the state of running a constant marathon.  The food that she was able to consume and grow on will eventually become not enough.  This is where we face the problem.  Basically she will grow into this type of heart failure.  We will need to boost her calorie intake for her to gain weight.

5-14-11 Update -  Ollie is on Lasix 2x a day.  She is in heart failure, but the words sound worse than the actual heart failure.  She needs medication to continue her growth & to help with fluid retention.  She currently weights 9 pounds 15 ounces & is around 21 inches long.

Surgery:

Hopefully Ollie will be sent home without heart medication after she arrives, & eventually can use 3 types of medication to prolong the need for surgery as long as possible.  That we won't know until she arrives.  Surgery will most likely occur between 6 weeks to 6 months of age.  Best case scenario - she will be admitted in the hospital for 7-10 days then recover 4 weeks to 6 weeks  at home.  For babies that have Down Syndrome they typically operate around 5-6 months because any longer than that can cause lasting damage to Ollie's lungs.  Typical babies can sometimes go up to 8 to 12 months of age before they need surgery, however, typical babies usually need surgery before Down Syndrome babies.  I don't fully understand that part, but this basically leads me to believe that most likely by 6 months of age Ollie will have her surgery.  Since we don't know if Ollie has Down Syndrome, we won't know how that will impact her until she is born.

5-14-11 Update - Ollie has her surgery date for June 9th at St. Louis Children's hospital.  She will be 1 day shy of 4 months of age.  Her surgeon will be Dr. Huddleston.

Success rates:

Babies at Peoria have a 95-99% survival rate.  He is confidant that with Ollie's heart she will have a 99% chance of survival & if she goes into surgery healthy everything will be fine.  So this is a good number.  Considering our odds of having this at all was 1 in 850 - it still worries me but I am confidant that Ollie will make it through surgery & recovery just fine. 

So this is basically everything we learned today.  We will have time, we will know when surgery is approaching, and Ollie will be closely monitored until she has surgery & even after surgery.

We decided that the time has come to tell Aubrie.  We'd tell Everett, but if you know him you understand that he is no where capable of this type of conversation yet.  We aren't telling Aubrie anything about the Down Syndrome since it is still unknown and in all honesty - Aubrie won't realize for a long time that Ollie is different because it's her sister.  That conversation is saved for the future.  So tonight we kept it basic.  We told Aubrie that we met doctors and that Ollie's heart will need fixed when Ollie is born.  We explained that the doctors will open her chest, fix her heart, and stitch it back up.  We talked about Mommy being gone for quite awhile to stay with Ollie, but that she will come and visit us.  She had questions, and we answered them all as simply as we could.  She worried about Ollie now, and we explained that while Ollie is in my belly she's perfectly fine, and that she'll even come home for awhile and Aubrie can help take care of her, but that her heart will make her sick and eventually she'll have to have her surgery.  It was hard, and she had a moment of tears and worry, but for her sake we stayed strong and didn't cry and made sure she knew that Ollie would be OK and not to be scared.  I have dreaded this talk for so long, she's not even 5 yet, but it went well and she's at least in the loop now on what's going on.  I'm sure preschool tomorrow may have some interesting conversations so I'm going to pre-warn her teachers in advance that she thinks she has news to share with the class.  I can imagine they don't want to spearhead that talk, and if you know Aubrie - you know it's going to come out fast.

Onto other news, we are making another huge life decision.  My sister Maggie, her husband Kylie, and their 16 month Caroline will be moving into our house with us in the near future.  They will stay in two basement bedrooms with their own living room & bathroom during the Ollie adventures and while they build their home next door through the woods.  We all get along quite well (Disney was our test run & we loved staying together) and Maggie has stepped up to the plate to be 2nd Mom while I am gone.  I can't explain how relieved I am over this.  I was very worried about disrupting Aubrie and Everett's lives and upsetting them while I am at the hospital with Ollie.  Jade will be back and forth as much as possible since he has his own business to keep up with to support our family, but I will stay with Ollie the entire time.  My Mom & Jade's Mom keep our kids which is a huge blessing, but I didn't want to overwhelm them in this time and I know they will also be with me quite often as well.  So my kids will stay in our house every night in their own bed, and so will Maggie and Kylie and also very importantly Caroline - her life will seem normal as well.  So Maggie & Kylie will provide the parenting while we are gone - they are taking on a big responsibility and oh how I appreciate them for it.  The grandmas will still help them & my kids, and I know my sister Abbie will also be all hands on board helping out as much as possible as well.  We are SO blessed to have a family as tight knit as we do and if I didn't have them, I don't know how we'd get through it.  Thank the good lord for Skype and people that will bring my kids to visit or I'd really struggle.  6 weeks away from home will be hard on me, but knowing my family is taken care of takes a huge burden off my shoulders.  So we shared this news with Aubrie tonight too and she's pretty excited about it!

So keep the prayers coming - they are working & we are all doing well & we are confidant in the good Lord and his plan for us in 2011!  I am excited to see St. Louis tomorrow so we can move forward.

***1-26-11  An update!  We toured Peoria & St. Louis and chose a hospital.  Ollie will be delivered at St. Louis Barnes Jewish with an induction date of February 10th.  The doctors there expect she'll go home as normal & present signs of heart failure most likely around 2 weeks or 1 month of age.  They expect surgery sometime between 3-6 months of age.  The cardio-thoracic surgeon, Dr. Huddleston, has been on staff for 10 years and the AV Canal is an "old hat" surgery to him.  It is also his favorite surgery to perform.  The success rate is phenomenal & our cardiologist, Dr. Lee, acted like we have absolutely nothing to be worried about at all.  The focus after birth will be weight gain & to keep Ollie healthy.  Ollie needs to be 11 pounds for surgery - the chubbier the baby - the better she'll do.  Germs are a big worry - if she gets sick she'll get really really ill so we'll probably be very careful on who visits and where we go to avoid germs.  St. Louis expects recovery time in the hospital after open heart surgery to be 4-7 days.  Ten days would be if something went really unplanned and we had a complication.  So the recovery time is also phenomenal.  Less time away from our other two kids is a blessing.  So St. Louis it is & we are thrilled & so blessed that God guided us to the right place for our Ollie.  We are so confidant and impressed by St. Louis - the staff & the facilities!***