Do I dare say we had a good evening last night… well, we did. There was minimal whining and crying. We played with stickers and talked and it was SO nice. She really didn’t even complain too much when I announced it was time for bed. Where is my little girl and what have you done to her!! I loved every moment and I don’t know about her, but I needed that.
Guess what – I am the only person in Ella’s hospital room at the moment. Ella, Colin, Carleigh, Daddy and Grandma Maje are all in the playroom on our floor. About an hour ago they took out all three chest tubes!! She looks great and has been all over the room. Ella needs assistance as she isn’t steady on her feet yet but it is so nice to see her up and about. The change of scenery in the playroom is very welcome. The end is in sight. Maybe home on Tuesday or in my dreams even tomorrow?
For now we are all enjoying being together and having our Ella back and whole. Praises to God.

Get me the heck out of here!!!!!!

Day Nine – we have been moved up to the heart center on the forth floor. This is good news and means Ella continues to do better. However, we miss those ICU nurses  The doctor was just in and stated all looks good for no pacemaker but they want to continue to watch her to make sure. That isn’t a problem since we can’t go anywhere. The chest tubes are still in place and draining. Two of the chest tubes have slowed down considerably but the third is still about the same as it was after the surgery. They placed a PICC line yesterday and removed her IJ. That didn’t go over so well. Chalk it up to one more traumatizing event for the little girl.
Ella is needy. Whining seems to be her main source of communication these days. It is already hard to understand her and the whining adds a whole new dimension to the art of translation/interpretation. Being the mean mom that I am, I made her take her own bites of food this morning. While in the ICU she couldn’t feed herself because they had a line in her left arm with a board to help keep it in place. She let me know in no uncertain terms that she wanted me to feed her today. I assured her she is capable and the nurse in me came out with firm encouragement for her to do this herself. You would have thought I was torturing her (as is the case most of the day) but she did indeed feed herself. In light of this whole experience, yet another miracle 
Paul and I continue to take turns spending the night at the hospital. We are the only constants for her and we feel it is important that she doesn’t feel abandoned. I’ve lost track of time – is it 9 or 10 weeks that she has been home? Sometimes it feels like she has always been here. Other times when we struggle to communicate I am keenly aware that this is all new to her. There is a fine balancing act of love, guidance, instruction, and correction of this feisty three year old. She keeps us on our toes.
I missed Ella’s feisty side yesterday when she was given oral medications. She has been taking medicine since she has been awake. Always with whining, but she has taken it. Yesterday for Paul she took the first medicine into her mouth, paused and it looked as if she might get sick. She then wiggled her way over to the side of the bed and spewed the medicine all over the floor. Paul was concerned at first that she had thrown up until he noticed there wasn’t anything except medicine on the floor. He corrected Ella and tried to hold back the laughter. As I write this Ella has been whining and crying nonstop for the past hour - honestly! She doesn’t even know what she wants or needs except to be out of here. She has asked for and been given stickers, coloring book, TV turned on and none of it makes her happy. I offered to color with her and she barked at me so I’ve retreated to my corner of the room in hopes she may fall asleep. I find it mind boggling that she can keep up the moaning/crying nonstop. She is making me tired!! Paul and the other two kiddos are on their way up to the hospital so I will be able to share her joy with others  Please feel free to come experience it for yourselves.

Recovering

Day Five in the hospital. Ella is no longer intubated and is only on 0.5 liters of oxygen per nasal canula with oxygen saturation in mid 90’s. Her blood pressure is finally increasing and seems to be holding for the past 12 hours. She is on 3mcg/kg/min of dopamine down from 6 this morning. Foley was removed. The continuous lasix drip was discontinued and now scheduled IV every 12 hours. Ella’s heart rhythm is 100% paced and I would expect a permanent pacemaker to be placed in the next couple of days. Her underlying rhythm is complete heart block. Ella has been sick today, bringing up the meals she ate yesterday. No appetite today at all. They just made her NPO – nothing by mouth for the time being.
Ella is mad and will nod her head “yes” when asked so. She is very withdrawn. For the most part she has chosen to be mute. The only real sounds she has made in the past 24 hours are crying and screaming when given oral medication. Colin is lying in bed with her right now playing with bendaroos. Even Colin hasn’t gotten a smile from her sweet little face today.
It is hard to see her this way. I’ve tried coloring, tv, laying in bed with her and rubbing her head, reading books, singing, short crafts, leaving her alone and nothing seems to make her happy. My mommy heart hurts for her. I gave her a bath last night and put lip gloss and blush on her. A girl should always look her best even when she doesn’t feel it.
Paul and I are now taking turns at the hospital. Tonight is Paul’s shift. Visitors are welcome. It helps to pass the time 

Post Op

Ella willingly woke yesterday morning at 5am and got into the car with no questions asked. There was much cuddling and laughter for the two hours we had before she went back for surgery. She knew something was up when asked to take medication to help her relax. Within 10 minutes she was a happy “drunk” little girl and willing went back at 7:30 for the procedure. Paul and I cried and held one another and then spent the day surrounded by our LIFE Group from church – and what a lifeline they all are. There isn’t a better group of individuals out there to have shared this experience with. The support and love was flowing all day until the last person left around 8:30pm. Long day for all of us and they chose to do their part willingly and we are so thankful.
There were hourly updates regarding the surgery and Ella. It took about an hour and a half to place all lines – IJ, Art, two periph lines, ET, Foley. Surgery began at 9:10am. They took their time getting to the heart as she has scar tissue from prior open heart at 10 months of age. Then she was placed on ECMO – heart lung bypass. She was on ECMO for three hours which is a long time. Going into surgery there were three “options” for correction. We did not know until surgery was almost over which option they were able to complete. That was painful for me. Finally after much prodding, the nurse providing the updates gave up a piece of information that let me know option #1 was done!! Relief. That was the best case scenario for Ella’s long term health.
About 4pm the surgeon came out to speak with us. The first thing he said was, “She has one MESSED UP anatomy”. They accomplished what they set out to do and as precaution decided to leave the sternum open and just close the skin for the time being. This is to give the heart room in the event there is swelling. Today she will go back to have the sternum closed and pace maker wires placed. She has third degree heart block that may or may not resolve – won’t know for about a week. Her vital signs look good and she is on minimal medication support – volume, lasix, dopamine, fentanyl and a form of roc until they close her chest. The details are for my medically minded friends. Vent settings PRVC rate 24, O2 down from 85 to 50%, peep of 5. Three chest tubes with moderate serrosang output. Good urine output, clear. Warm skin and for the first time EVER pink fingernails!! The nurses had enough time to put her hair in pigtails and color and cut out letters to spell her name – that is always a good sign 
We were awarded a Ronald McDonald sleeping room in the hospital last night. The support services available in the hospital are great. Around 9pm, after making sure Ella was alright, we headed down for some rest. We awoke at 2am and called for a report on Ella and then slept through to 8am – that was much needed. We have been at her bedside ever since. Colin and Carleigh are on their way up now to see mom and dad.
Please continue to cover Ella in prayer. Your support has meant so much to us. I do not have an exact time but they think she will go back for surgery around noon today. Will continue to post updates.

God is in control!

My mind is restless but filled with praise and prayer to God. My almighty savior has covered the fear I’d been feeling. Friends, family and our life group are surrounding us with prayer, love and their availability which helps so much. So, this is the week. Wednesday brings a trip to the hospital for testing and meeting with the doctors and then Thursday morning at 6am we will arrive for surgery at Riley.
SURRENDER is not only been a theme at church recently but it is ultimately what has brought me peace about all of this. God is in control. His plan is perfect. He will watch over us and Ella and hold us close.
I think the hardest part for me about preparing for the surgery is that my flesh desperately wants to know the outcome - Now. If I only knew how this would go, would I change anything? I could plan better if I knew exactly what to expect. There is a lot of “I” in all those statements. It is not about me. It really isn’t about Ella, though the experience will be uniquely hers. It is about God. It is allowing Him to be in the driver seat. It is about trusting He is big enough to cover all. It is about surrender to God.
It is my pleasure and honor to love and raise Ella Jia. However, I do not hold the deed to her life and existence. I help shelter, protect and guide her precious little life but that is by the grace of God. She was entrusted to us by God. She is a gift from Him for us to watch over while we are together on this earth. But she IS His.
The past couple of weeks I find myself soaking Ella up. She runs with her shoulders high. She speaks new words and sentences at a rate I can’t fathom. I love hearing her voice. She wants to do everything by herself and in most cases would be capable. She is a quick learner and very cleaver. Regardless of how tired, when asked, she will announce repeatedly and with authority “Jia not tired.” When we sit down to pray at a meal she is the first to bow her head and put her hands together. She “practices” her English with me. Daily we have a session where she runs through all the new things she has learned by repeating them to me, seeking my approval. She gets so excited to go and greet Carleigh after her sister wakes. The girl is obsessed with school! That is all she wants to do and I what I hear about all day. “Ella no go to school. Colin go to school. Colin seven. Ella no seven. Ella school when seven.” She loves to sing and immediately chimes in with her own version but always to the tune. She continues to use the Chinese word for airplane. I secretly encourage and hope that an airplane is always a “fei ji” in our household.

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.