Lucy is home!

Lucy has continued to improve and we were discharged from the hospital by the cardiologists Saturday morning. I am writing this update from home! Four days after Lucy's surgery we are finally back where we started and our house is bustling with activity. Grandma Kathy and Grandma Carol are still here and are taking great care of us: playing with Maryn, cooking, cleaning, watching Lucy while we catch up on sleep. It is so WONDERFUL to have them here.

Lucy is much the same as before her four-day ordeal with the exception of her scar and a hoarse voice. Her little whimper is so sad. I never thought I'd say it, but I hope her normal cry returns soon. She enjoys playing on her play mat and reaching for toys held over her chest. She was very happy to see her big sister. She still seems a little subdued, but who wouldn't be less than a week after open heart surgery? I am just amazed by her progress and her sweet spirit that takes it all in stride.

We have an appointment with her pediatrician sometime this week to do a physical and remove a few stitches that are left from the drainage tubes. Her scar is held together by glue that will flake off over the next couple of weeks. She's back to nursing and while they want us to supplement her diet with bottles of fortified formula she still refuses to drink from anything but mom.

We'll have some pictures up soon!

Movin' on up

Lucy's first night out of surgery passed uneventfully. We weren't able to see her until 10, and while it was hard to see her hooked up to all kinds of tubes and IV's, she was perfectly calm and sedated. Chris and I actually went home to sleep knowing there was not much we could do for her at the hospital. My mom stayed behind to keep an eye on things. They surgeon's told us to expect Lucy to have some difficulty pacing her heart and maintaining her heart rate. They expected to extubate a couple of days after surgery. Lucy has surprised us all by maintaining a normal rhythm and posting textbook numbers. They removed her breathing tube yesterday afternoon, less than 24 hours after her surgery.

Things got a little more difficult after that as they were not able to sedate her after removing the breathing tube. She was in a bit of pain and kind of squirming around on the bed. Her voice was quite hoarse from the breathing tube and her little cry sounded so forlorn. I'm so thankful my mom was there to comfort her as I was just not able to take seeing her in pain. My body was physically hurting and I had to sit down to keep from throwing up. They were able to put her on morphine which helped a little, and by morning she was settling down. Our good friends Jess and Matt came by with dinner from Baja Fresh and sat with us for a while to take our minds off of things for a bit.

Lucy has continued to progress well today and the surgeon's gave the go-ahead to remove some of her restrictive IV lines and I was finally able to hold her. She was even able to nurse a little which helped to calm us both down. She slept in my lap for a while, drifting off to Pride and Prejudice playing in the background. With the removal of most of her tubes and IV's, we are going to be moved to the 9th floor clinic for the rest of our stay as Lucy is now "too healthy" to be in the ICU. We are so happy with her progress over the last two days, but we have grown very attached to the ICU staff of nurses and moving upstairs will be a little bittersweet. We promised to come visit before being discharged completely. That could happen as soon as this weekend. Lucy is a model patient!

We would love to start seeing some of you soon if you'd like to visit. I'll add an update with our new room phone # when we get it, but I think we'll be able to check our cell phone voicemail more often so feel free to leave us messages or e-mails as well.

Thank you for all of the e-mails and phone calls. We are thinking of all of you!

She's out of surgery!

Praise God! We still haven't seen her, but the surgeons just came out to tell us how it went and I am convinced God had a hand in it.

As I mentioned before, because of the amount of narrowing in her Pulmonary artery they were expecting to have to place a patch that would hold it open but would cause leakage that would require valve replacement down the road. It turns out that once they cut away the muscle that had built up underneath they found the valve to be larger than they thought and they were able to place the patch in such a way that the valve could continue to function. This is a much better scenario and means she should hopefully have a better chance to avoid another surgery in the future.

They also told us that her heart has returned to a normal rhythm which means she won't need a pacemaker. This was a risk with her surgery and one I was kind of worried about.

She will remain in the ICU for two or three days because of the amount of muscle they had to cut away. It will take her heart a little while to adjust to the new layout :) They all seemed very pleased and surprised at the favorable outcome. It seems that the muscle was VERY thick and they can't believe she made it this long without more serious symptoms.

We are so relieved the surgery is over and KNOW that the outcome is a direct result of all the prayers being said on Lucy's behalf. Thank you, God, for protecting little Lucy! And thank you, thank you, THANK YOU, for joining with us in prayer for her.

Lucy is in surgery

Lucy is in surgery right now. They started late - we handed her over to Dr. Zimmerman, her anesthesiologist, at 3:15. She probably won't be done until 8 or 9. More updates then.

We are all doing well. Chris is watching episodes of "The Wire" on his i-pod and Maryn is taking turns reading books and walking the halls with Grandma Carol and Grandma Kathy. We are not overly worried or anxious. We could not ask for a better team of doctors or more compassionate and understanding nurses.

Thank you for your prayers! We are confident Lucy is in the best of hands and know that God is watching over her.

Surgery tomorrow at noon

We got the call today that Lucy's surgery is a go at noon tomorrow. We have to be at the hospital at 8:00 am for pre-op. I think we'll leave the house pretty early to allow for morning traffic and give us time to get settled and feed Lucy one last time. The surgery will be about 5 hours long and she'll be in the ICU for 2-3 days until they take the breathing tube out at which point she'll be moved upstairs to the less critical hospital floor.

Please join us in prayer during the surgery for God to guide the hands of the surgeons and give them wisdom in how to repair her heart. Please pray for comfort for our family, that we would not be anxious and would be praising God in advance for healing our little Luce.

We had a GREAT day at home including playing in the snow that fell early this morning and taking Lucy to see a movie (Juno) and to meet some of Chris' co-workers. We also had our super talented friend Kim take some professional photos of Lucy before her surgery (ie: before her scar). We'll post some of those later...I'm sure they'll be amazing!

We'll let you all know when Lucy is out of surgery tomorrow. And thanks again for your wonderful e-mails and phone calls. We really appreciate hearing from you and want to know what's going on in your lives as well!

Here are some photos from our great day:


Grandma teaches Maryn about snowballs...


and Maryn throws one in Lucy's face!


Lucy is happy to be home.

Photos from the hospital and home

Here is a photo journal chronicling our stay (so far) at the Children's Hospital:

Thursday Jan. 24th:

Lucy looking little and worried - the wires are for a telemetry monitor keeping track of her heart stats.

Friday, Jan 25th:

Chris and Lucy: after 8 failed tries in her hands and feet they had to put the IV in her head :(

Saturday and Sunday:

Grandma Carol and Maryn playing at home


Lucy in her swing (they let us bring it to the hospital) - notice her red "rudolph" toe through her sock (another monitor)


Lucy is WAY too happy to be in the ICU - so they sent her home! Yay!

We're home...for now

Hooray! We're home!

Lucy has been doing so well on her new medication that they sent us home until the day of her surgery. We're still on the schedule for Tuesday afternoon, but there is a good chance we might be bumped to Wednesday if another, more critical patient needs surgery on Tuesday. She has not had any more spells and her heart rate, blood oxygen and blood count are all holding steady. You'd never have known she was sick from the way she acted in the ICU over the last two days. She was cooing and smiling and charming everyone who came by. I think she must be feeling better already because I have never seen her so animated.

It seems as though God has answered the prayers you all have been saying on our behalf. We never would have imagined that we would be able to return home at some point before her surgery and I think it will make a big difference in our ability to cope with the days to come. We will be better rested and have a chance to pack up what we will need for the week or more in the hospital following the surgery.

Chris and I feel a remarkable peace and assurance that all is well and that God will guide the hands of the surgeons to repair Lucy's heart. I have been able to let go of the guilt I felt about not recognizing the severity of her condition. Thank you for your prayers about that. It really does seem to be God's timing and Lucy seems no worse for not having had medical care during this last month. We are really looking forward to having her be well and to seeing how her personality develops when she is no longer feeling so weak and tired.

Our prayer requests during the next days are for continued health and strength for Lucy, that she would enter surgery well rested and in the best condition possible. As far as the surgery itself, please pray specifically that the doctors might be able to repair her artery in such a way that it would not require further surgery down the road. Because of the severe narrowing in three key places they feel the probable fix will be a patch that will hold it open allowing the blood to flow through to the lungs. Unfortunately, this causes some leaking of the blood back into the heart which eventually will need to be repaired when Lucy is in her teens. If they are able to open the artery by another method this second surgery would probably not be necessary. Pray that there are no complications from the anesthesia and that her little heart and bones and skin heal quickly.

Please also pray for Maryn, that she would not be frightened and that she will adapt well to the lack of routine over the next weeks. She was able to come to the hospital today to see Lucy. She seemed to make herself right at home after the initial shyness wore off. Maryn and Lucy seemed really happy to see each other and Lucy would not take her eyes off of her sister as we showed Maryn what all of the wires and monitors were for.

I will update this again when we know exactly when the surgery will be so you can join us in prayer for her during the five or six hours she will be in there.

Thank you for all of your great comments, e-mails, phone calls and visits. They have been so comforting during these last few days and we love hearing from you. We have especially appreciated hearing the stories of people who have been through similar surgeries and are now fully recovered. We are totally confident Lucy will have a similar story to share soon :)

Love you all!
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