Tuesday, May 31, 2016

Central Shunt Surgery

Lyla is undergoing her first open heart surgery. They are going to place a central shunt in order to help her pulmonary arteries grow.

We stayed in the Akron Ronald McDonald house. How grateful we are for the services that they provide. We were due at the hospital by 6am and it would have been super early to come from home.

Here is a picture of Lyla before we got to the hospital this morning. She was all smiles even though she was terribly hungry.

 Mark and I had a hard time handing her over to the nurses to undergo her surgery. I felt a little like Abraham when he was taking Isaac up the mount to sacrifice him. I never know what the outcome of a surgery will be, I know I have to have faith. I just struggle with it.

Our last moments before they take her away to surgery.
After about an hour our surgeons assistant came out to let us know that Lyla is doing well, she went to sleep easily and they were able to place the shunt without putting her on bypass. What a blessing.

After waiting in the waiting room for what seemed like forever they brought us back to the PICU to see Lyla. She was heavily sedated and still intubated with a large drainage port. When the nurse pulled back the blanket I nearly fainted. Seeing my child in such a state is indescribable. I wanted to take all the pain and hurt away, I didn't know what to do.

Here are pictures of Lyla after the surgery. She had to remain intubated for 3 days as she struggled with breathing after the surgery.

On day 3 they turned off all sedation and pain medicine. They gave her only Tylenol for the pain.

Lyla seems to not be doing well. She is crying non-stop and they don't know why. She had an echo today to see if something is wrong. It came back negative. I am concerned because she keeps throwing up and her eyes are crossing. It is almost like she is going through withdrawals.

One of the few moments of Lyla at peace. They brought her a swing and she slept 4 hours in it.

We asked the doctor if they could put her back on the pain medication. They are looking into other options as to what might be causing her to cry uncontrollably.

They finally gave her the pain medication 18 hours later and Lyla is perfectly happy. The doctors are now going to wean her from the medication.

Day 8 and we are finally able to take our little girl home! What a long week and a day!

The wagon ride out the door. Life is good!

Lyla and Mommy snuggling after sleeping in our own bed! This was day 9 after the surgery.

Smiles for days!

Wednesday, February 10, 2016

February 2016 - Heart Cath 2

February 9, 2016

Today, Lyla had another heart catheterization in which they attempted to balloon open her pulmonary arteries. Unfortunately, it did not work as it had in the past and they are still very narrow.

However, when Lyla came back from the cath lab her pulse ox was 100! Only briefly and then she floated back down to her usual 85-89 range.

The doctors have said that due to the narrow pulmonary arteries she will have to undergo an open heart surgery in order to place a central shunt in her heart. Then we will wait.

Lyla peacefully sleeping after her heart cath.

Lyla struggled to breathe after being under anesthesia and had to be on oxygen. They had to keep her overnight in the PICU.

And the picture of the 100 on the pulse ox.

Sunday, January 24, 2016


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.

Saturday, January 23, 2016

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.

Sunday, January 10, 2016


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).


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.