Thursday, January 31, 2008

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!

Tuesday, January 29, 2008

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.

Monday, January 28, 2008

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.

Sunday, January 27, 2008

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!

Saturday, January 26, 2008

Saturday in ICU

Friday was HARD. It was a day of anxiously waiting for more information, of trying to console a scared and hurting Lucy, of battling with emotions over the diagnoses and the events leading up to it. Everything came to a boiling point Friday evening as we were moved to the ICU. I was snapping at everyone, doctor's included, and was having a hard time controlling my emotions. But people must have been praying, especially after our last e-mail update, because things rapidly improved from this point on.

The guilt was getting the better of me and I was at a terrible low point. The nursing staff changes for the evening at 7:30 and our nurse came in to introduce herself and check Lucy's vital signs. We instantly established a connection with her and began to feel more at ease in our new situation. Nurse Theresa was an incredible blessing to us and an answer to prayer as she helped us mediate between the world of doctors and hospitals and the protective instincts of Mom and Dad. We bonded over our common home-birth experiences (she is 36 weeks pregnant with her fourth child and still working 12 hour shifts!) and she was extremely sensitive to our needs. She arranged to have the standard hospital crib exchanged for a regular bed so I could sleep with Lucy and nurse her easily during the night. This alone made a HUGE difference in our ability to rest.

Friday night passed uneventfully and Lucy's blood oxygen levels remained high - a sign the medicine was working. Things always seem to look better when the sun comes up, and our spirits were renewed today as Lucy seemed to be stable and content. She's charming every nurse and doctor she meets and no one can believe she has anything wrong with her. She loves to look around at the activity and is an avid people watcher, chattering away as we hold her in the doorway to look out at everything going on. The doctors and nurses have been wonderful and compassionate and we are so thankful we can be at such a wonderful hospital where they are taking great care of our little Lucy.

Maryn has been having a BLAST with Grandma Carol and doesn't miss us a bit. She's been making playdough, and mixing pancake batter and baking cookies and soaking up all of the one-on-one attention. I was able to go home for a couple of hours today to take a shower and get a few things done. Maryn seemed to want more to do with Grandma than with me, which is how it always is when Grandma visits.

The GOOD NEWS is that because Lucy's medicine seems to be working and her stats have remained consistantly stable we may be able to GO HOME at some point soon. Hooray!!!

Day two at Doernbecher Children's Hospital

*** This is the text of an e-mail I sent out to our close family and friends. If you received the e-mail, disregard this post***
*** This information was as of Friday Jan 25th.***

Hello faithful friends and family -

First off THANK YOU for the outpouring of calls, e-mails and visits we have received since sharing the news of Lucy's illness. We are comforted by the knowledge that so many are praying and the well wishes and offers of help are greatly appreciated. We'll let you all know if there is anything we need as we are likely to be in the hospital for another two weeks at least.

Lucy did great at her echo this morning and turned out not to need sedation after all. She was intrigued by the ultrasound pictures and the colors of her moving around through her heart.

The results confirmed the diagnosis of Tetralogy of Fallot. They were able to more clearly see the extent of the condition including a severly narrowed pulmonary artery valve which transports from the heart to the lungs. This has caused the muscle surrounding the valve to become enlarged as it strains to compensate for the narrowing. This all still sounds like a bit of gibberish, but we are slowly learning how to interperet this new language.

Her surgery is scheduled for Tuesday afternoon. They will repair the hole in the wall between the ventracle chambers, remove the excess muscle below the valve, and enlarge the valve itself. There is a possibility they might have to do emergency surgery before then if she has any more severe "tet spells" - she had one this afternoon. Please pray that the medication the are giving her to prevent this works well and that the surgery can continue as planned on Tuesday. We want her to enter surgery as strong as possible and not as an "emergency" situation.

It has been a long and emotional day for us (me especially as Chris was not with me when the spell occured). I'm feeling lots of guilt for not figuring this out sooner. Please pray that God would dispel that feeling so I can be a better support to Lucy.

Sorry I have not returned calls today. My voice is gone and as I said, it has been a long day and I'm still processing the information. We have been moved to the ICU so they can better monitor Lucy's condition while she is on the medication. We have no cell phone reception there, but I will give you all our room phone number tomorrow. You can continue to leave messages on my cell phone or e-mail as I will be checking both throughout the day. I think we'll be ready for some visitors soon, so feel free to call and let us know if you would like to come by and we'll let you know when would be best for us.

We love you all so much and will continue to update you over the next few days. I'm hoping that a good night's sleep with leave us all feeling better tomorrow.

-Jess, Chris, Maryn and Lucy

Thursday, January 24, 2008

Please pray for Lucy

I don't know where to begin this, so I'll just jump right in from the middle then flesh it out on the ends.

Please pray for Lucy. We found out today that she has a heart defect that will require open heart surgery to correct. I went into the pediatritian for what I thought would be an hour appointment and 12 hours later am writing this from the computer at the Doernbecker Children's Hospital.

Now back to the beginning.

For the past month I've noticed an interesting pattern of behavior in little Lucy. She had colic for the first few months, so maybe that's why it took me so long to distinguish one type of cry from the other. In any case, she sometimes has "fits" where she'll flail a little and emit a high pitched cry, and sometimes go limp when I try to pick her up. Yes, I know those symptoms sound serious, and I'm a dolt for not picking up on it sooner, or taking her in a month ago when I first noticed it was odd. But, seeing as she normally falls asleep right after said behavior, I chalked it up to tiredness and just figured I had let her go too long without sleep. She usually calms down within a few (maybe 5) minutes, so I didn't think it was too abnormal.

When it started happening every day, however, I became more worried and made an appointment with the doctor. Our normal pediatrician is out of town so I was seen by a nurse practitioner who did not take me seriously. She saw Lucy for 5 minutes, deemed her behavior "normal"- maybe a little high-strung, but normal - and told me to go home and continue nursing her. Lucy is also VERY petite, so I'm constantly worried about her weight in addition to the strange behavior. Turns out, the heart defect is to blame for her small stature. They assure us that once her heart is fixed she'll be a normal, chuckling chubby baby.

Anyway, a friend of mine from church came over for a playdate last Friday and saw Lucy have one of her "fits." She made the observation that her lips looked a little blue during the episode. This was something I had previously missed, as the blue tinge is very slight and I'm usually trying so hard to calm her down that I missed this symptom. Turns out this is the one that really gets the doctors moving. I have to say on the record here that Allie is my hero because without that observation I might have waited another two weeks until our regular pediatrician was back in town before making another appointment for Lucy. Instead, I scheduled one for today.

The doctor we initially saw actually got to see Lucy have one of her "fits" as she got so riled up during the exam that it caused her to exhibit all of her strange behaviors, including the blue lips. We went for a heart x-ray and ekg which were then sent with us to the doctors at the Children's Hospital whom we were to see that (technically this) afternoon.

We sat around in our room for a while before no less than EIGHT doctors walked in. It felt like a scene from Grey's Anatomy. This IS a teaching hospital, so most of them were students in various stages of residency. We (or I, because Chris hasn't really seen Lucy's fits in action) answered a half-hours worth of questions before being sent down for an ultrasound of Lucy's heart. We have to have this procedure done again tomorrow as Lucy was too squirmy. They are going to sedate her this time. Aparently, though, they have enough information for a diagnosis: Tetrallogy of Fallot. Pretty much it means she has a hole in the wall between her two lower heart chambers AND a narrowing of the Pulmonary artery, the artery that carries to the lungs. We lucked out in that having the two in combination is actually a GOOD thing as they kind of balance each other out. I don't remember how right now, so you can google it or e-mail me later for more explanation :)

Whew!!! That was long. Thanks for reading if you got this far. As of now, we have to wait until the echo tomorrow morning before we have a clear picture of when the surgery needs to happen. I'm thinking within the next two weeks, if not sooner. We'll keep you updated through the blog, so check in for more information in the days to come.

Now for some blessings God has given us throught this situation:
-God's timing is PERFECT. So many little timing things worked in our favor during this ordeal. Chris' mom was already scheduled to come into town tonight for a visit. She's staying with Maryn and giving tremendous moral support. Our dear friends, Scott and Lisa, watched Maryn all day today as Scott just happened to be on vacation this week from his job as a fireman. Two good friends from church, Julie and Mark, met us just after we got the diagnoses and prayed with us to calm our hearts (and they brought us dinner :))
-The cardiologist told us that even if they had found this defect at/shortly after Lucy's birth, they still would have had to wait until now to do the surgery. What a blessing to have 5 1/2 worry free months to enjoy our baby ! And to have a quick resolution to the problem once we found it. Thank you, Lord, for protecting our little one for these 5 months!
-You all are a tremendous blessing (cheesy, but I don't know what other word to use - it fits!). Knowing we have people praying for us makes this all so much easier to bear. Lucy is in God's hands even while we hold her in ours and we can rest in that knowledge. We are so thankful for all of you - family, college friends, church friends, friends that we don't know but who might come accross this blog and pray for us anyway. We thank you for your care and concern during all of this.

I'm tired of typing, and I KNOW you're tired of reading :) so I'll leave it at that until we have more information.


Thursday, January 17, 2008

Max, Powells and lunch downtown

For the five months since Lucy has joined our family we have usually spent weekends catching up on sleep, with Chris and I tag-team napping throughout the day and no one changing out of their pj's. This weekend we decided to forgo the naps and spend the day on a downtown "adventure."

Maryn has been especially interested in buses and trains recently. She knows that Daddy takes a bus to and from work and cries every time we pass a bus she doesn't get to ride. With this in mind we rode the light-rail MAX train from the suburbs to downtown Portland instead of driving to visit Powell's bookstore (the best bookstore ever!)

Maryn observing the sights from the MAX:

Lucy in the sling:

While Chris looked for ways to spend his Christmas gift certificate (thanks Tom and Britt!), Lucy and I read and watched Maryn "organize" a display of Little Golden Books. (Does anyone else remember reading Poky Little Puppy or The Saggy Baggy Elephant? They were favorites in my house growing up)

After book buying we strolled to a restaurant that specializes in noodles for a delicious and filling lunch. The kids were ready for naps by the time we got home from our outing, but it was nice to use part of the weekend for something other than sleeping :)

Chris and Maryn at lunch:

A new hat

One of Lucy's Christmas presents was a beautiful hat, hand-knit by grandma Carol. We didn't get to use it much when we were in California for Christmas (it was in the 70's at least!), but it has been the perfect hat now that we're back home in Oregon. It is made of a pretty cream/tan colored yarn with variegated brown stripes. Thank you, grandma Carol!

Lucy in the sling wearing her new hat:

A better view of the stripes:

Friday, January 11, 2008

Lucy is 5 months old today!

Happy 5 month birthday, little Lucy! I can't believe how quickly these 5 months have gone. The first few were all about adjusting to life with a toddler and a new baby: learning how to juggle two nap schedules, meals, Lucy's feedings, house cleaning (wait, I still don't have that one down!) and all of the other things I took for granted when we were a just a family of three. There's still very little routine to our day and more often than not a whole list of things left undone, but we are having fun being a family of four and can no longer remember life before Lucy came along.

One of my favorite things has been watching Maryn interact with her sister. She adopts the same sing-song "baby talk" voice we must use when talking to Lucy, cooing "it's ok, Luce" and "there you go, Lucy-goosey." And the funniest was during reading time yesterday as Lucy began to fuss a little and Maryn said "she's an angry elf." Chris and I will occasionally make this remark amongst ourselves but this was my first time hearing Maryn repeat it. So much funnier coming from a two year old!

Lucy likes to talk with most of her noises sounding like Aaaa Aaaa but with different intonations. There's a questioning phrase, an excited phrase, and an "i'm unsure about this" sounding one, too. She LOVES to be read to and enjoys looking at the pictures in any book or magazine. Her favorite toy so far is a colorful foam cube with a picture of a panda on one side. She'll smile and coo at it for minutes at a time. She still likes being carried in her sling and enjoys being out and about and watching big sister Maryn play.

Here is a picture of the girls after reading time in our bed:

I hope they will always like each other this much!

Tuesday, January 8, 2008

Fun with playdough

Maryn's most recent toy obsession is play-doh. I guess it's not technically a toy, but she will choose it 9 times out of 10 over her numerous other (and of course more expensive) toys. She especially likes to use it to make play food such as "smuffins"(maybe a combination scone-muffin?) or pancakes or "grim chee" (a rather macabre version of "grilled cheese").

After watching her play with her dwindling stash of store-bought play-doh via webcam, Grandma Carol sent us a recipe for homemade playdough. How fun! A real cooking project that when finished can be used to concoct endless new imaginary food items. The perfect activity!

Here's the recipe:

2 cups flour
2 cups water
4 Tbs. Oil
2 Tbs cream of tartar
1 cup salt
Food coloring

Mix all the ingredients in a medium saucepan. Simmer 2 to 3 minutes until dough come away from the sides of the pan. Knead a few minutes. Store in a plastic bag.

I tried this recipe using a 1:1 ratio of baking powder and baking soda to substitute for cream of tartar but the playdough came out too sticky and just got tougher to handle the next day. We tried a second batch using cream of tartar and it was perfectly pliable with no sticky goo residue. So go to the store and get the cream of tartar!

Here are some pictures of Maryn enjoying her playdough (we used some jello powder to color it but you would probably have better results with the food coloring):