Introduction

When I found out what my daughters Congenital Heart Disorder was...I immediately ran to the internet to research all that I could about her condition. The problem for me was that there were no blogs or real life examples online for me to know what to expect with my little girl.

Let me tell you our unfolding story.

I am 31 years old and a diabetic. I have Polycystic Ovarian Disease and have had 4 miscarriages over the last 3 years. Each miscarriage happened anywhere from 8 weeks to 11 weeks. But then I got pregnant a 5th time and this time I was seen by a high risk doctor from 9 weeks on and he is the most amazing doctor I have ever worked with. He was able to help me keep out little girl.

Around 22 weeks he noticed that something was not quite right with Lyla's heart and he sent us to a specialist to conduct an echocardiogram. During the echo we were first told that it looked like our little one had Transposition of the Great Arteries (TGA). I joined an online support group and they were some of the most amazing, supportive people. I felt confident that my daughter would survive this disease because of the optimism of this group.

Then at 28 weeks I went back for the next echocardiogram and the new diagnosis was that she had Truncus Arteriosus. You guessed it! New support group. Only this time the support group was not so supportive. They were not optimistic and I was so scared for my little one. I cried for days and blamed myself for wanting another child despite all the other losses.

36 week echocardiogram they thought she might have a hemi-truncus, but still were not 100% certain. Lyla was delivered at 37 weeks due to my diabetes and pregnancy induced high blood pressure.

We attempted to deliver naturally but after 13 hours of labor her heart began to have difficulties and they took her caesarian. The plan was for the doctors to take her over to another room as soon as she was born in order to assess her and give her oxygen. I knew I would not get to see my little girl right away. They also told me that I might not hear her take a breath or anything, but the moment she was born she came out screaming. I cried and knew that I had become a mom. I was grateful for the tender mercies of the Lord having her come out crying.

Week 1

Lyla had a NG (feeding tube) and was on oxygen. She also had an IV and a PICC line. The PICC lines made it to where they would not have to keep removing and replacing the IV's in her hands. PICC's are permitted to stay in longer whereas an IV will need taken out and replaced every week. I strongly suggest allowing the doctors to place a PICC line.

When I got to see her for the first time at the children's hospital, she looked so fragile due to the amount of tubes and cords running through her.

She had an IV in her right hand, two PICC lines coming from her right arm. She had 2 IV lines coming from her belly button. Those lines had multiple syringes coming off of them. She also had 6 leads monitoring her heart as well as 2 pulse ox's one on her left hand the other on her right foot. Needless to say she was wired.

This was Lyla just hours after birth in the NICU.

They decided on her 6th day of life that they wanted to place a shunt, but then changed their mind last minute and decided to do a heart catheterization instead.