"I Know the Heart of Life is Good"

Most immediate family and close friends know about Brynn's condition, but I felt compelled to write this journal to share our daily journey as her arrival date approaches...

March 10, 2013

36 weeks 6 days

July 2012 our lives changed forever when we found out we were expecting.

October 31, 2012 we found out we were having a girl.

December 4, 2012 we had a routine anatomy scan and were able to see the perfect parts of our baby.

Nothing could have prepared us for December 12. December 12 was one of those days that every soon-to-be parent prays will never happen to them. On December 12, 2012, I received a phone call from my doctor saying that some the scans that were done the previous week came back abnormal.

Abnormal.

Abnormal?

Abnormal!

Abnormal?!?!

What does that even mean?? Dear God, what does that mean?? According to doc, it could mean a murmur or a hole in her heart or nothing.

I hung up the phone hyperventilating. I was barely able to hold the phone in my shaking hand to call Jonathan, much less keep my wailing in control enough to tell him to come home from work, NOW. I paced around the apartment frantic and sobbing and praying out to God. I called my dear mother barely able to tell her the still daunting news. Because she's amazing, she was able to calm me down enough to realize this may work itself out, this may be fixable, this may be nothing. I stayed on the phone with her until I saw Jonathan's car pull up minutes later. I fell into his arms sobbing and begging for reassurance. We cried, and prayed. We laid hands on our baby and made a decision right there to give every part of this situation to God. 

Two days later, on December 14 I went to the hospital for an in depth ultrasound of our sweet baby's heart. My wonderful friend Antonina accompanied me (thank God) since Jonathan was unable to get off work. Again, I was able to see our little girl moving all around, being as stubborn as could be for the poor technician. She was so magical...how could anything be wrong? "Look at her!" 

I thought...her heart is beating, she's dancing, she's showing us her already sassy personality. No way, this was just a simple mistake. At worst a heart murmur, which I learned after hours of research is fairly common in babies and often requires nothing more than some supplemental monitoring. 

After a really long ultrasound, the doctor came in. Dr. Maslow was a tall handsome older gentleman with a soft voice and warm hands. He smiled and made me feel comforted. He carefully looked at the screen enlarging her precious little beating heart. He said something inaudible to the tech and they both looked serious.

Lump. In my throat. Can't focus on anything. Say those words again. What did he say? What do they see that I don't? I'm fuzzy...

Lights on.

A blur happened next....scary words.

Heart defect.

Surgery.

Possible genetic abnormalities.............................................................................WAIT.

Did you see her doc??? The dancing?? The magic?? This can't be right, Jonathan and I are both healthy, our families are healthy, our families families are healthy. Certainly no "defects" anywhere. Maybe we need to look again.

No, it's there, not difficult to see. A tiny beating heart that is missing pieces. Not like a tiny hole that will repair itself....like a big hole that requires serious intervention. This just got so devastatingly, unimaginably, real.

So, baby Brynn has not 4, not 3, not 2, but 1 chamber. Her heart is basically open. Blood from the lungs mixing with blood from the body. A tiny heart that is not at all functioning the way a heart needs to. She has what is called complete balanced Atrioventricular Canal Defect (AVCD). Whoa. I definitely just entered an episode of Grey's Anatomy. 

This is a (much better) picture of what Dr. Maslow drew for me on a white board:

The last 3 months we have had 3 echo-cardiograms of her heart, 4 in depth ultrasounds to monitor her weight, measurements, and overall cuteness :), and had a multidisciplinary team meeting (SpEd friends, I joke that my daughter's not even born and already has an MDT, ha!). The hospital 15 minutes from us is ASTOUNDING and has a childrens hospital with all the staff Brynn will need over the next few months. Hallelujah, Go Geisinger!
Who was at this MDT meeting?

• Me
• Jonathan
• Grandma (my mom)
• Grandma (Jonathan's mom)
• Dr. Maslow (maternal fetal medicine OB)
• Cardiologist
• Head of Pediatric Surgery
• Cardiothoracic Surgeon
• Head Nurse of Labor and Delivery
• March of Dimes Rep
• Missy, our wonderful coordinator
• Chaplin

Everyone of these people were awesome. They answered questions, knew what they were doing, and made us feel as comforted as you can feel as a first time parent with a child who will need open heart surgery while she's still an infant....

We've shared Brynn's story with family and friends, had 2 AMAZING baby showers, set up her nursery, put car seats in, and prayed and prayed and PRAYED. God has continued to reveal Himself to us as we turn to only Him through this time. We are able to see the whole picture of Brynn's life when we see her through His eyes. We are able to feel peace knowing that only He is in control. We are able to find joy in this difficult time knowing the Truth of His Word will guide us.
We know unconditional love and we haven't touched her hand or kissed her face.
If it is possible, we are more in love with her because we know how precious every moment with her will be. That we were given her to love and care for for a very specific reason, and for that, we are SO grateful.

I am going to bullet point what we know about this defect in order to not get too wordy and make things more confusing:

• While she is inside me, she is perfectly healthy. As of my 36 week check-up, she weighs 5 lbs. 15 oz., which is in the 33%...GO BRYNN!!!
• I am able to have a natural child birth
• If I go more than 41 weeks they will induce labor :( anyone know any old wives tales to naturally induce labor????
• When she is born we will be able to hold her and spend time with her, but she will need to have an echo-cardiogram done shortly after birth.
• If the echo reveals nothing further than what we already know about her heart, we will have a normal hospital stay!
• The first few weeks of  Brynn's life should be very similar to any baby; eating, crying, pooping and sleeping.
• After about a month or so, she may begin to have difficulties feeding due to her lungs having adjusted to breathing air. 
• A high calorie supplement will more than likely be introduced to her diet around this time. 
• Side effects she MAY have from months 1-5: difficulties feeding, blue lips from lack of oxygen when feeding, and blue extremities from breathing difficulties.
• After she is born the doctors will assess her each month to decide the best time for surgery
• Most AVCD surgeries occur between 3-6 months of age...the older the better because she is bigger and stronger (I will discuss more about the surgery next time)

This blog thing is totally new to me. It might take me a while to get used to.

We appreciate you reading in support of our sweet baby girl. We want to share our story in order to glorify God, comfort others who may be going through something similar, and sharing with those we love SO MUCH on a regular basis. We want the people from Illinois, Vegas, California, Western PA, Michigan, Indiana, Florida and elsewhere to know what we are up to in this next chapter of our lives.

Much love.

For you created my inmost being; you knit me together in my mother’s womb^.   I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well.
~Psalm 139:13-14