Good News...

Lilly was taken off the ventilator today and is successfully breathing on her own. Her drainage chest tube and IV in her neck were also taken out today. Her blood pressure was high for a while due to agitation, but is stable now. She is finally able to take breast milk - she is getting 6 cc's of milk every hour through an NG (nasal gastric) tube. Her color looks good and she continues to be alert when not in pain/on pain medication. Unfortunately, we still can't hold her due to the RA tube in her heart (measures heart pressures) and central line in Femoral artery; hopefully these will be removed within the next few days (decision to be made by surgeon).

Please continue to pray for Lilly and our family. We are praying that she will be out of ICU within the next few days and moved to a regular room.

Surgery

Today was the day of surgery. We all had a very long night. We stayed up with Lilly pretty much all night except for a few hours when we tried to sleep. At around two in the morning Lilly had her X-ray that would be used as a baseline for her surgery. At around six the Chaplain came and we all had a prayer for Lilly before her surgery. Finally at 6:30 they wheeled her off to fix her tiny heart.



The surgery is going well at the moment. We are receiving periodic updates about her status. The first update stated that she had just been put on the heart lung bypass machine and was tolerating it well. The next update we got the nurses stated that the surgeon was 50% done with the procedure and everything was still going well. Lilly was stable and we would hear back soon. The last update that we have heard is that the surgery is almost complete. The main heart surgery was over and they had taken her off the heart lung bypass machine. They are now watching the bleeding in her heart and keeping an eye on her vital signs. I just talked to the nurse again and she said Lilly is on her way back to the ICU. Thanks for all your prayers! Surgery was successful!!! Please continue to pray for her full recovery.

Loving on Lilly cont.

Today is Sunday and everything is going good! Lilly is feeling pretty good, although still somewhat fussy from not being able to eat. We have discovered that she has a sweet tooth like her mommy because she loves the sweetwater that they give her to calm her down. Most of the day today she was in and out of sleep, sucking on her passie all day. She was goven tylenol twice to help with her fussiness, but all other nutrients and medications stay the same. Her eyes are looking great as you can tell by the pictures, but still have some drainage that needs to clear up. This evening was one of the best in a long time. Charlie and I were able to hold her. I don't think I have ever felt this happy before or ever seen Charlie this happy. I have shared some pictures of us holding her before the surgery. Also there are some pictures of Lilly looking at her new toy that Charlie and Danielle got for her. She absolutely loves it!!! Keep her in your prayers tomorrow for it will be a big day for her. I will keep everyone posted throughout the surgery about how she is doing. We love you all and hope to be home soon!

Stop pinching my cheek!

Loving her new toy from Daddy and Danielle!

My sweet Angel!

One more day

I'm going to combine Fridays and Saturdays status on Lilly because not much has changed. Lilly is beginning to act more and more like a baby. She has been extremely fussy, mainly because she just wants to be picked up and fed. It's really hard right now because when she starts to cry I just want to pick her up and cuddle her to make her feel better.

We received her brain and renal (kidney) scans back and both came back normal, which we are extremely relieved about. The kidney scan tests to make sure they are functioning well and formed normally. The brain scan does not test for brain activity, but tests for strokes, bleeding on the brain, etc. To help calm Lilly down throughout the day we brought her some music to play so that she does not have to listen to the beeping all day long. I was telling Charlie that we are going to have to find a beeping machine to play when we get home so that she'll fall asleep. She loves the music, especially when her mommy and daddy sing to her along with it. The nurses say that she keeps fussing, but right now we cannot do much but wait for the surgery. Today the only thing that was different in her condition is that the central line in her femoral artery began to leak, so the doctors had to "re-wire" it. To do this she was on a partial sedative. She woke up later in a mad rage because I think she realized she was hungry again. Mommy and daddy came in to save the day and we helped her fall asleep again. We also found that she really likes sugar water. This is something the nurses dip pacifiers in the help calm Lilly down. God is really helping us stay strong for Lilly. I thank everyone for their prayers and help again. I want to thank those that have been providing us with a place to stay and meals for me and my family through this tough time. We now have one more day until her surgery and are patiently waiting. Until tomorrow...

Lovin' on Lilly!

Here are some pictures of Lilly with her mom, dad, and paternal grandparents. She is definitely loved!

Looking healthier and healthier

Lilly is doing awesome for the circumstances she is in. Each day she begins to look healthier and healthier. She still receives Lasix every eight hours, blood labs every twelve, and is now receiving nutrients through a central line in her femoral artery. This central line is also used to take blood so that the nurses do not have to keep sticking her and to measure her exact blood pressure. To put in the central line the doctors had to give Lilly a sedative and morphine, but she woke up a few hours later, but seemed very weak. After her nutrients began kicking in she became more awake and her strength began to increase. She even started to show off for the nurses and was picking her head up by herself and kicking her socks off. I'm trying not to leave any information out, so if I skip around with what has happened in the last few days, please bare with me. A physical therapist came in and gave Charlie and I some exercises to do with Lilly to help keep her mouth and rooting reflex strong. The doctor's did say that Lilly has an advantage because one of the main recoveries after surgery is learning to eat again. Many babies are not able to eat when they are born but have to go straight to ICU. We were given the blessing of being able to take Lilly home and treating her as a normal baby. Lilly is doing great with the exercises and has a strong bite, even when she is sleeping. Also her eye infection is doing a great job of clearing up, but she is still receiving antibiotics for this.

It's great to be visiting her when she is awake, she just loves to look at you and listen to you sing and talk. On Thursday, Lilly's daddy read her first book. She just loves when someone is visiting her. It's hard to leave because you can tell she knows, and she begins to fuss and cry when we start walking away, but I know that deep down she knows we'll be back. I want to also thank everyone out there for their thoughts and prayers. The fact that so many people care means so much to me and Charlie. We love you all!

Arriving in Charleston

Lilly and me arrived in Charleston Tuesday night around 10 o'clock. Charlie and his mom soon followed and arrived around 11. When we got to the hospital, the nurses took Lilly to PCICU and set up everything. PCICU is an intensive care unit for children with heart problems. In the meantime, Charlie and I, along with friends and family waited until we were able to go back and see her. When we were able to me and Charlie rushed back to see her. She was bundled up in one of her favorite blankets with her pacifier in her mouth looking very content. The nurses took blood for a genetics test and other blood work. All levels came back within normal ranges, but we will not receive the genetics test for about 2 weeks. When the doctor came to see us the same night, he explained that Lilly has something called Truncus Arteriosus or that is what he first thought by looking at the echo cardiogram. He also said that a lot of times it is genetic or may be caused randomly.

My cousin Beth gave me a handout of what Truncus Arteriosus is so I'll give you a simple, brief explanation. When a baby is developing in the womb, his or her heart begins as one large blood vessel and eventually separates into two, the aorta and the pulmonary artery. In Lilly's case, this did not happen, therefore, she was born with a common arterial trunk. Since she does not have a separate aorta and pulmonary artery, her oxygenated and deoxygenated blood mixes. This is where it gets confusing so try to follow. The aorta should carry oxygenated blood from the heart to the body and the pulmonary artery should carry deoxygenated blood to the lungs. The one large artery is mixing both types of blood and using only one single valve. So instead of having 4 valves like you and me, Lilly only has 3. With this her aorta also goes to the right instead of the left like our hearts, but this is not a problem that they are worried about. In conjunction with the shared trunk, a part of the wall between the left and right ventricles is missing (a hole in her heart). The hole is what enables the one artery to receive both oxygenated and deoxygenated blood. Because the blood is mixing, her oxygen levels decrease. Lilly's main problem is that she has more blood being pumped to her lungs than to her body. In order to partially fix this problem before surgery and to keep fluid off of her lungs, she was given a small dosage of Lasix, which helps in fluid retention. I have also read that there are three types of Truncus Arteriosus, but I yet to know which type Lilly has. After a long night, we left Lilly and tried to get some sleep. I think this was the hardest night because it was one of the firsts for me when Lilly was not by my side and I did not get up to feed her. The one thing that helped me through this was knowing that God would give me the strength and we would see her in the morning. So although Lilly may have a hole in her heart, there is much love that is being poured in to fill the gaps.

Taking one day at a time...

Before I begin explaining everything, I would like to thank everyone out there for keeping Lilly in their thoughts and prayers. You have all along with God's grace have given me and her father, Charlie, the strength to get through each day. With that we are able to help Lilly stay strong before her surgery. Before I get into that I'll start off from the beginning.

We took Lilly into see her pediatrician on Monday morning because we were worried she may have conjunctivitis (otherwise known as pink eye). When we got there the nurses did not even seemed interested in that, but were concerned about her rapid breathing. To me and Charlie this was normal because this is the way she has been breathing since birth. We did ask the pediatrician in the first few days she was born, but he stated that it was normal and moved on. She had no other signs of a heart problem. Well at the doctor's office the nurses checked her temperature, blood pressures, respirations, and oxygen levels. Her oxygen levels seemed to be somewhat low and her respirations high. The doctor listened to her heart and then called in another doctor to do the same. After checking and re-checking everything (which took 3 hours) the doctor's decided they heard a heart murmur and suggested that we go straight to Greenville Memorial, which we did.

At Greenville Memorial Lilly was tested and re-tested for all kinds of things. She was very irritable by now because so many people were messing with her. She was exhausted, but one of the only places she would sleep was on my belly. She wanted to stay close to me and her daddy. To make a long story short, the cardiologist found problems with her heart through a echo cardiogram. He decided right away that we needed to be flown to Charleston because he knew Lilly would have to have an operation. At around 7:15 on Tuesday evening Lilly and I got onto a jet and were in Charleston in about 35 minutes. In one day Lilly has rode in an ambulance and flew in a jet all before she turned 2 weeks old!

Happy Birthday Lilly!

Lilly was born on July 10, 2008. She weighed 7 pounds, 13 ounces and was 19.5 inches long.