Open Heart Surgery

Things at the Hammond household remain full throttle busy and at times hectic. Ella is amazing and is adjusting better than we could have hoped. She is using sentences now and new English words daily. “Colin at school” “Baby is tired” “Ella go outside” and the list goes on. Today we told her Colin’s and Carleigh’s middle names. This evening out of the blue she walked up to me and said “Colin Andrew”. It is so exciting to see all the changes she is going through. In a matter of weeks she went from never being on a swing, to the baby swing, to a big girl swing needing to be pushed and just today she is pumping her feet and propelling herself on the swing. Brought a smile to my face to see her on the swing, but also made me feel like she is growing up too fast. She is learning to count to five, knows most body parts and repeatedly announces where every family member is (home, school, flying). Ella tries to sing the ABC’s which goes something like ABABAB but to the tune of the song. The patty cake song is a favorite. She dresses herself with minimal help. She enjoys brushing her teeth and even started taking naps this week (that was a big feat for all of us). She has met extended family and friends and they have all welcomed her with open arms. She has felt their love and has warmed up to them quickly. We are so grateful to everyone for taking such an interest in her. Ella smiles come freely and sad moments are very minimal and usually only when she is extremely tired. Ella is a big fan of Colin and copies everything he does. If he sits a certain way, she folds her legs like his. If Colin burps, she burps and on and on. She desperately wants to play soccer and go to school like her big brother. Colin has warmed up to being a big brother and seems to have “re-found” his place in the family. Ella also enjoys watching out for baby sister Carleigh which is welcome as Carleigh thinks anything and everything should go in her mouth. We loving refer to her as the billy goat. Ella has helped rescue her sister from a tortilla chip, rock and various pieces of paper!! Ella gives us kisses but it is always on her terms. However, she is smothered daily with kisses from the rest of us. Ella knows the “I love you” sign and uses it regularly -especially at bedtime. I can’t wait until the day we hear the words - that will be yet another moment for happy tears. Ella is a joy and life at the Hammond’s is better with her in it.

She had been referring to herself as Ella but in the last two weeks consistently refers to herself as Jia. The rest of the family now calls her Jia on occasion as well. Her Chinese name is JiJia. Paul and I talked and plan to change her name to Ella Jia once all the paperwork is final. It was a big discussion on what to make her middle name initially and Jia was one of the options. Now we know it is the right one. We have never used Renee and that doesn’t suit her.

Alright, I will address the dreaded surgery. I keep hoping if I don’t talk about it, it will go away. Open heart surgery is scheduled in a little over two weeks on October 21 at Riley Hospital for Children here in Indianapolis. It is a major surgery. As many of you have stated, she doesn’t look sick. No, she doesn’t. Her limitations are not glaring. However, when you around her long enough you will notice she becomes short of breath with minimal exertion – such as walking up a flight of stairs or from the car into a store . Colin stated it the best last week when he observed “Ella copies everything I do. Except I’ve noticed that when we are outside she doesn’t run around like I do.”

It is hard to explain in writing what they will do as you have to understand her anatomy which is NOT normal in any way. A picture of her heart is in the prior posting. For those who need details, they will be doing the rostelli and mustard-senning procedures and then baffling the blood flow. The short of it is that they will connect the aorta to the left ventricle, close both the VSD and ASD, put in a conduit from the right ventricle to the pulmonary arteries, tie off her existing shunt, and baffle the blood flow (move from right to right and left to left chambers). She will be on heart/lung bypass for the surgery. While we are obviously concerned for her well being we are also pleased that it appears at this time we can correct her heart. Once surgery is completed, her heart will flow/work like it was intended to. That is good news. No more being short of breath, blue fingers/ toes and the clubbing of her digits may even go away. The doctors are encouraged both by her age and current health. If we do not do the surgery she will in her 20-30's begin to have major problems as the right ventricle is not designed to be the body’s main pump. Without "fixing" her heart she will have a shortened life span and her quality of life will decline. They can do things to help along the way but they will never correct the core problem like the scheduled surgery is intended to do.

After the surgery, they will need to replace the conduit once, maybe twice. The reason being they cannot put one in that is big enough right now (her heart/body is too small to accept a full size conduit). Once the correct conduit is placed, she theoretically won't require any additional open heart surgeries. They should be able to maintain the valve in the conduit through a cath procedure.

Of course there are many risks with the surgery/her heart anatomy in general. Death being the most frightening of them all. She may also require lifelong medication to help her heart rhythm, she may require a pacemaker at any time for the same reason. Both of these remain a risk regardless of the surgery. They may also get into the surgery and for various reasons find they cannot do what they intended. At that time they/us will discuss options (quickly). There are some back up fixes in mind should they be needed.

It is a bit overwhelming at times. We have talked with 3 different doctors to make sure we have all the information we need. We feel as confident as we can about the surgery. Ella is learning her external body parts to which we have added HEART :) It doesn't matter, this WILL NOT go well for her even if I did have language on my side. She is three and a fighter. The fighter part we love about her and is a plus in my book for the surgery. Colin knows Ella will have a surgery and there is a possibility they won't be able to fix her heart. He asked last week if she could die – we had opted to not offer up that information but didn’t lie when asked. Kids are so darn smart!

We will plan to blog during our up to two week stay at Riley. Please keep our family, Ella, the doctors and staff in your prayers. I won’t lie and say we aren’t scared or that there isn’t any stress in our house right now – there is. But what I do know is that God brought this family together and He is in control. I will trust in Him and lean on Him for comfort and peace. Open heart surgery on my precious 3 year old daughter, HE is big enough to cover that.