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

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.

Love
Us

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:

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!

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):