Specialist Visit

Mylah completed another heart scan today. Results look pretty much the same. They were able to get much better views of the 3 areas of tetraology. They took more accurate measurements as well, and determined that her VSD (ventricular septal defect) is approximately 6 mm. long. The blue dot below illustrates this approximation, or size of the hole that runs between the right and left ventricles. The cardiologist also mentioned that he was seeing what appeared to be another rare anomaly with her heart. A vein or artery is branching off near the aorta and going somewhere it shouldn't. He said that he has only seen it a couple of times in previous TET babies. However, he wasn't 100 percent sure that this is what he was seeing, and that after-birth ECHO's would put a better finger on it. He mentioned that this finding would require immediate surgery after birth because of it's affect on how her brain and lungs would perfuse. Our next appointment with this specialist is on Sept. 30th if she isn't born by then. We meet with the surgeon, Dr. Ciccolo on Monday the 19th.

Touring Sunrise Hospital

We had our orientation today at 3pm of the
Sunrise Children's Hospital NICU and PICU where Mylah will be born. Our tour was given by Mia Rios, R.N. She is the Perinatal Nurse Manager at Children's Heart Center Nevada. We met a few of the Nurses in both the NICU and PICU who were helpful in answering some of our questions about what we might expect during and after Mylah's birth.

This is a picture of the PICU. Here we met a family with a TET baby. They let us come in their room and see their baby boy (4 months) who had just come out of surgery. He had a BT shunt done following birth, but quickly outgrew it, and began regurgitating (perfusing poorly). So they flighted him down here from up north and performed emergency surgery. His chest was still open, and we could see his little heart beating away under the special transparent derma-gauze that was protecting the incision. It was a blessing to talk with them, to gather some sort of perspective of what we need to be prepared for. We are thankful to them for being so generous, and allowing us to visit with them in their room.

On Monday, the 19th, at 10:45am, we will return to the Children's Heart Center of Nevada to meet with Mylah's surgeon, Dr. Michael L. Ciccolo.
He wants to discuss with us, in detail, the options we will choose from for surgery. Every TET baby is different, so they will only be able to fine-tune her options following an Echocardiogram...minutes after birth. Her severity will determine whether surgery will be immediate, or 3-4 months down the road. In any case, surgery will be a must-have for her. We will be praying for strength to persevere down whatever road she decides to take us.

Heart Poem

Today is a special day in Heaven. Heavenly Father and Jesus are choosing their tiniest angels to go to Earth to be born. A certain angel approaches the Savior. Saddened by the news, she takes His hand and whispers in His ear, "I don't want to leave, I love living here with you, and I will miss you." He re-assures this worried little angel that everything will be okay, and that she will be there for only a brief visit. She is still not okay with this plan. So the Savior places this precious girl upon His knee, and says to her, "How about if I leave half your heart here with me, and you take the other half with you, will that be okay?" the angel smiles and says, "I guess that will work." But the little angel is still a bit hesitant. She asks, "Will I be okay with only half of my heart?" The Savior replies,"Of course, I have placed other angels there to help you on your way. You will be in good hands." The Savior gives the angel more details of His Plan of Happiness. He says, "When you are born, your Mommy will be scared, so you must be strong. When you feel weak or sad, just remember that I have the other half of your heart. Cherish your time with your family, plan and laugh with them every day. And when it is your time to come back to Us, We will make your heart whole again. Always remember that you are not broken, just torn between two loves." - Anonymous -

CHD

About 35,000 infants (1 out of every 125) are born with heart defects each year in the United States . The defect may be so slight that the baby appears healthy for many years after birth, or so severe that his life is in immediate danger.

Heart defects are among the most common birth defects and are the leading cause of birth defect-related deaths. However, advances in diagnosis and surgical treatment have led to dramatic increases in survival for children with serious heart defects.
SOURCE

From about 23 weeks on we knew that Baby Mylah had a two vessel umbilical cord.
Two vessel cords often don't cause any problems, but sometimes they do.

On Thursday when Mylah was diagnosed with TOF, I asked the specialist if it was related to her two vessel cord, to which she replied, "Yes."
Often they see heart and kidney problems in babies with two vessel cords.
A lot of babies have no problems at all.

Our precious girl is one of those rare cases in which her heart and kidneys are both affected.
Her heart is more severely affected than her kidneys, but they both bring worry none-the-less.

After this whirlwind weekend of diagnosis, Neil and I have partially come to terms with the fact that our baby will be born with a Congenital Heart Defect.
We are taking action already to support our little fighter in whatever comes her way.

We have researched, purchased CHD products to support awareness, and studied all we can to slowly prepare ourselves for her birth.

Nothing will be the same, this birth will not be normal, our lives after her arrival will forever change, but we will stay strong, pray often, and do His will as He directs.
We are truly thankful to have a knowledge of our Heavenly Father's plan and that no matter what happens, Mylah will be blessed and so will we.

We pray for other CHD Families and whatever they are going through.
There are so many, the statistics are staggering and as medical advances continue to improve we can only hope that our little miracle girl and others will see a long and happy life after their CHD diagnosis.