NICU Stay

In all we spent 20 days in the NICU. 2 weeks of those were after her heart cath while she learned to eat. Lyla struggled learning how to suck, swallow and breath all at the same time. She would often choke and not be able to catch her breath afterwards.

Lyla struggles with being breast fed as it is a lot of work for a baby and she didn't have the stamina to go for longer than 5 minutes. So, I decided that she could be introduced to the bottle. She still struggled taking the bottle in the hospital.

We were released from the hospital on December 23, 2015! IT was a Christmas miracle! We decided to surprise all of our family and show up for Christmas dinner.

All geared up and ready to go home.



Hanging out in her car seat.

 

First Surgery

Lyla hours prior to her surgery.

Lyla's first surgery was a heart catheterization in which the doctor went in through her groin and inserted a balloon into each of her pulmonary arteries and stretched them open.

Peacefully sleeping just before her surgery.

The doctors weren't sure how successful the catheterization would be so they prepared her father and I for the worst. When the doctor came out to talk to us they told us her surgery was a success and she did not require the oxygen any more. We were relieved to say the least.

This was the evening after her surgery. She was smiling and happy.

January - 1 Month Home

This past month I have learned so much about being a mom to our little Lyla. Several parts are easy and some are not so much.

Lyla finally learned to eat well! We are so proud of her. She takes a bottle like a champ and even takes to the breast every once in a while. I offer her breast every day in the hopes that one day her stamina will improve and she will take it easily.

Family came in for Lyla's baby blessing at church and our house was full of visitors. We loved having the family visit, but it was nice once everyone went home.

We learned this past week that Lyla has an allergy to dairy and because I am breastfeeding I have to be off dairy too. It seemed like it would be a more difficult challenge than it really is. I am the type of person that a challenge for someone else is really easy. It was easy to give up caffeine because it was for her. It was easy to do a diabetic diet because it was for her. Now, I walk away from dairy for her. I wanted her for so long that any thing she needs I will do it.

Diagnosis

Once Lyla was born they were able to determine that her CHD was Tetralogy of Fallot. The reason she was so hard to diagnose in-vitro was due to the uniqueness of her anatomy.

 

Lyla's aorta actually goes up and then down to the right instead of the left. She was also born with out her PDA and her pulmonary arteries are crisscrossed and very narrow. She also has a VSD (hole in her heart).

 

 

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.