Diagnosis and where we go from here

Yesterday we were in Dallas for our first cardiology appointment for London. We showed up at Children's Dallas and were taken to the third floor for her first ECHO first. For those of you that don't know what an ECHO is, it is a heart sonogram. I laid on the table for one hour and 45 mins as three people whispered and looked at each and every inch of her heart. It was so comforting to have Trey and his parents in there with me. After that long screening we were told to go next door for a "consultation" with the doctor. We sat at a small table and all pulled out notebooks/notes to take as she spoke. She showed us a picture and explanation of what normal anatomy of a heart looks like...and then showed us what London has.

The diagnosis is:
1) Tricuspid artresia- London's tricuspid artery never formed correctly. Therefore, her right ventricle didn't grow with her. She basically put it in easy terms by saying "no flow, no grow"
2) Hypo plastic Right Ventricle- Hypo plastic right ventricle means a smaller barely functioning right ventricle.
3) Smaller aortic valve - skinnier than normal aortic arches.
4) Concern for aortic interrupted arch - her aortic arch might not be connected to the bottom of her heart.
5) London has a larger ventricular sepal opening (which is actually good for all of her other defects)

Our surgeon will be Dr. Joseph Forbess. I have heard so many WONDERFUL things about Dr. Forbess. Yesterday was no exception on the wonderful things about him. He actually is known for his work on hypo plastic hearts and aortic arch reconstruction. His statistics are MUCH better than the national average (which is 85%).

After the diagnosis we went on a tour of the cardiac ICU to see where London will be taken after I deliver her. We were told yesterday that usually they are pretty stable after birth and we will be able to hold her/take some pictures. She will be taken there in the first day of life and will be watched very closely. Her condition if not treated, she would turn very blue fast. Taking her to the NICU allows them to monitor oxygen levels, blood flow and her stability.

She will have her first open heart surgery in the first week of life. This surgery is called the Norwood (which I mentioned in my previous blogs). This surgery will be a giant change for her heart. They will block off parts of her heart and do some "re plumbing". They will create a shunt for her to get better blood flow to her lungs. This surgery is also where Dr. Forbess will reconstruct and widen her aortic arch. After this surgery is her most critical time period, her heart has to learn how to function this way. She has to learn how to eat, gain weight, and the pressure in her lungs must go down. Of course we heard statistics, things that "could" happen, things shes at higher risk for, etc. She will be in the ICU for around 3-4 weeks if she does well. Two people can sleep in the room so I will most likely sleep there most nights. She will then be moved to the 8th floor where they will teach Trey and I how to take care of her. We will learn how to check her oxygen levels, weigh her (everyday), care for her scar... The 8th floor is the step closer to going home.

Home, well that's another thing we talked about yesterday...I will most likely have to live in Dallas until her next surgery, the Glenn, (4-6 months of age). They like these high risk babies to be around 20-30 mins close to Childrens. Most of the infant deaths in these cases are because the families aren't close enough to the hospital if something were to go wrong. We are still trying to figure out our plan for that time period. Most likely we will find an apartment for me and Trey will just come up on weekends. I know this is such a short period of time and is whats best for our daughter...but I'm going to miss being with my husband.

Yesterday was more than draining. Probably one of the most draining days of my life. Its such a weird feeling to be pregnant with a baby that will have such struggle. Walking through that hospital was also a giant reality check, this is my new life.

I guess one positive of yesterday is we know what specific things to pray for and it could have been worse.

Specific things to pray for:
1) Londons aortic arch/aorta to grow with her.
2) Blood flow in the aorta and aortic arch to not have "back flow" in her brain. For her brain to not experience any delays or physical delays.
3) Her lungs to grow strong.
4) That I don't go into labor early, she is full term and is big as we can get her.


This is one of the least fun blog posts...but its reality. I'm stressed, so incredibly tired and wish more than anything in this world I could give her a better heart. I will get better but yesterday was hard. It's hard to feel like God can't hear me.
Driving home around 11, Trey just said "I love you. I wouldn't change anything about you."
I guess it's Jesus in disguise, telling me "I've sent people to help you, I love you."

Thank you for the prayers,  we all need them.