|Mama Katie & Rowan June 1, 2012|
She continued and kept taking pictures, more pictures, and focused pictures on her heart, she wasn't seeing what she needed. She said nervously as she grabbed the long strip of printed pictures "I'll be right back" and left the room. I panicked and glanced at my family and said "that's never a good sign" what could possibly be wrong that she needed to leave.
She came back in a few minutes later (an eternity) and said point blank "I'm sorry there is something wrong with your baby's heart, you will have to be referred to a specialist and there isn't much more I can tell you other than it looks like hypoplastic left heart syndrome"
Ummmmmmmm..... What now? I don't know what that means. What it is, and you have to be mistaken. Your wrong. I started crying I got up, wiped the gel off my belly and ran to the bathroom. I came out some time later and hugged my OB. She told me they would call with an appointment with a perinatologist and to not go home and google. (I think every doctor says that and every parent goes home and googles).
I went home, cried, screamed, and sunk into a black hole. I see "multiple open heart surgeries" transplants, high mortality rates and stories of babies that have passed online. I was in denial, anger, asked "why my baby, why my family, why me?"
I had to wait until August 4th for my appt with the specialist. Those were the longest most agonizing days I've ever experienced. Google is a dangerous weapon in the hands of a newly diagnosed and distraught parent.
I lay on that table trembling with anxiety and grasping onto my husbands hands. They did a very detailed scan and measured everything. The perinatologist came in and talked after and they confirmed that my precious daughter did in fact have HLHS and we would need to be followed closely by a pediatric cardiologist as well them. What is HLHS exactly? The entire left side of her heart wasn't there, or was severely underdeveloped. What did this mean? Her left ventricle responsible for pumping oxygenated blood systemically was absent. She would not survive without surgery and medications right after birth, and at least two more surgeries to get her heart to function using one ventricle.
That was a hard and bitter pill to swallow. But we wanted to give this miracle every chance we could give her.
So I went to my appointments, monthly, then weekly, then sometimes multiple appointments in one day.
I transferred all my care to a
Children's hospital 35 minutes away and found a new OB to take over my care as well so I could deliver at the same hospital.
As we neared my December 25th due date I knew something big was gonna happen. My life would be forever changed. I would have to leave my job, we would probably have to find somewhere else to live, I would stay at home after her birth and recovery and become a mother again and nurse. I prayed that God would give me strength and guidance for this new journey I was about to embark on.
•December 12, 2011• 10:02 AM
5lbs 8 oz 18 3/4 inches long
A induced and very smooth and fast delivery (and dare I should say easy?) my perfect daughter was born to an audience of doctors nurses and it seemed like the number multiplied with every push.
She was here all swaddled with her hands on her cheeks, lips puckered and her button nose sticking out. The first part of her I touched was that button nose. I had about 5 minutes to hold her I told hubby "snap some pictures!" she stayed in the NICU until December 16th.
It's been 4:30 pm and Dr. Carl said they would have to replace the valve and take her off bypass while the cadaver valve thawed. 6:00 pm Dr. Carl said heart was liking the new valve much better and she was off bypass. They would finish up and come update in and hour. Dr Carl came in about 30 minutes later with a worried look on his face. He is not one for hiding his emotions real well.
"Rowan did not tolerate coming back off bypass, she is in very critical condition and will be put on an EMCO machine (machine that circulates and oxygenates blood) so her heart can rest, she wont survive unless she’s on it. There is also a lot of bleeding they are trying to control. We will update u as soon as possible."
10:30 they are still trying to stop her bleeding and having a very difficult time keeping her stable.
|Newborn Rowan, December 2011|