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.

Love
Us

7 comments:

drurylane said...

We are praying for you little Lucy!

& Hoping that you were all able to get some rest!

Thanks for all the information Jess!

Love you,
Mom

Drew & Erica said...

Andrew & I will be praying for you guys and sweet little Lucy. Yes, what perfect timing that Carol's trip just happened to fall right now. I know from personal experience that during trials, God's goodness shines through in the little ways that are so important. He has Lucy in his strong hands. Let us know if you need anything.

josephjen said...

Jes, we're with you in prayer for Lucy...and for peace of heart for you and Chris! We love you guys...keep us posted!

Katers said...

You are all in our prayers with all that you are facing. I was blessed to hear your grateful thoughts and admire you as a mommy. We love you!

Andrew said...

Jessica and Chris,
I echo Erica's comment. Also, my best friend from high school had a very similar experience with his daughter. He took her to the Mayo clinic, which is nearby, and they corrected the problem. No longer term consequences. She's totally normal and fine now.

colingrant said...

Jess and Chris we are praying for you and your famliy. Please lets us know of any way we can be of help.
hugs
Michelle, Brian, Colin and Calleigh

Tani Jansen said...

Jessica - I am saddened to learn about sweet Lucy, I so enjoy seeing the two of you sit outside the sanctuary during lecture at CBS. Her little face is such a delight! I will pray for healing for her ailing little heart, as well as you and your husbands. Thank you for taking the time to explain Lucy's situation on your blog as well as the blessings you have seen. I am praying for serenity as I know it can be difficult to sit in a child's hospital room, the walls/curtains can seem to get smaller and smaller, privacy is at a premium! If McDreamy or the Chief comes by tell him hi for me :-) Fondly, Täni