3.8.12

THE BEGINNING


This blog starts with a story of sad/scary/amazing news.As you know, on February 11, 2012, our beautiful 5 pound baby girl, Lauren Charlotte Arneill was born.







In her first two months, she doubled her birth weight and turned into a pudgy little baby. 



She kept growing and gaining weight. She was learning, exploring her world, and brightening up ours. 




After being concerned about Lauren for about a week because she was losing a little bit of weight, and visiting doctors multiple times, including Tuesday morning, and being told that the doctors weren't anxious, Matt and I decided to bring Lauren in to Children's Hospital to have her looked at. I suspected that there might be something wrong with her stomach, but I didn't have any idea how sick she really was. This photo was taken just one hour before we came to the hospital when we were outside laughing together in the backyard. The last thing Lauren looks is sick.



We were shocked to hear that the problem was actually in her heart. An Xray confirmed that her heart was enlarged and, while we were first told that she would need medication and to stay overnight, within an hour of us showing up at emergency, Lauren's heart stopped. The doctors were able to revive her, put her on a breathing machine and keep her stable until the next morning.We were told that she has something called a distended cardiomyopathy which is just a fancy way of saying that her left ventricle was stretched to twice its shape for some reason. Usually this occurs for an unknown reason and is not something that doctors can correct. We were told that we would likely be looking for a heart transplant for our little girl. But there was a highly unlikely chance that the problem was structural, meaning that it could be fixed surgically. We prayed like we have never prayed that God would deliver us this highly unlikely news and after a CT scan on Wednesday morning, our prayers were answered. Lauren was born with a heart defect (ALCAPA) that no one ever caught because she was so strong and grew so quickly. This heart condition is the reason why she was so small when she was born. In Lauren's heart, the artery that should come out of the aorta to deliver oxygenated blood to the heart was actually coming out of her pulmonary artery, meaning that for her whole life her heart muscle has been fed by deoxygenated blood. On Tuesday, it had worked so hard to compensate that it just couldn't do it anymore.The doctors scheduled the surgery for Thursday morning and were going to give her a CT scan of her brain Wednesday night to check for any damage from her cardiac arrest the day before. An opening occurred and they got her in to her CT scan Wednesday afternoon so she was all ready for surgery.



However, just after leaving her bedside on Wednesday at 6pm, I was called frantically back as her heart had stopped again. But again, God was with her. The cardiac surgeon and the team were only 3 feet away from her when she coded and they started her heart again and rushed her into surgery on Wednesday night.



During the surgery, the structural defect was atypical but the surgeon was still able to move the vessel into the correct position and close up the pulmonary artery. At 2:30am on Thursday morning we saw our little girl with her chest still open, hooked up to 14 IVs, a breathing machine, a monitor and a huge machine called an ECMO which takes the blood out of her heart, oxygenates it and puts it back in all without her heart having to pump. Her heart was so weak and tired that it just couldn't do it alone.

On Thursday morning they had to open her up again around 6am because she was losing a lot of blood from the wound. We were told that our hope should be to have some heart activity returning by this afternoon (Friday). But again, God blessed us with another miracle. Last night as Matt and I were sitting at her bedside talking to her, small, tiny little movements started to happen on the flat line that was her heart beat on the monitor. By the time we left, she had a light but steady rhythm happening. 

This morning, her rhythm was strong enough that when the machine was clamped, her blood pressure didn't drop to zero. Praise the Lord! 

Initially the doctors told us that there was no way that they would try to wean her off the bypass ECMO machine until at least Sunday but to expect it to 7-10 days and, as we have been fervently praying, they are going to try to start challenging her heart tonight. We believe that God will give us victory. She is now working with a heart that is tasting oxygen for the first time and she is fighting! Her heart is still very weak but it is able to recover enough that she will get to keep her own heart.

I would like to ask you to join in our prayer. Our prayer needs right now are that her heart is up to the challenge and that she is able to be removed from the bypass machine and stay stable. Another prayer is that God watch out for her brain as the blood thinner can cause her to have bleeding in her brain. We are also praying that God prevent clots from happening which would cause complications. The sooner that she is able to get off ECMO, the better it is for her brain and the clotting issue but it will be hard on her heart. Please pray that the doctors are able to find the exact right time to remove the machine.We have seen miracles happen already.

If we had remained at home and listened to the doctors, she would be dead.
If we weren't at the ER when it was totally empty (when does that ever happen!!), she might not have been seen right away.
If the 7th doctor to listen to her heart hadn't heard the gallop, we may have been sent home.
If the resident cardiologist hadn't seen a flash of something in the ultrasound that not even the head cardiologist saw, they may not have found the structural defect.
If we weren't with the right people at the exact right time, her heart would not have been restarted a total of 3 times now (one more time in surgery).
If we weren't asking for miracles, we might have given up.
The list of miracles is never ending.

Please remember my little girl in your prayer and help us as we lift her up to the Lord for miraculous healing.We pray that healing that should take 7 days, take 1, and healing that should take 7 weeks, take 1.We pray that the whole hospital be abuzz with the miracle of her healing... It has started to spread already.


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