Friday, December 15, 2006

Yet another praise report for our Jordan Joy! We had her heart ultrasound today where they discovered she has a Patent (open) Foramen (window) Ovale (oval) which would mean a "tiny" opening between the left and right Atrium. ???? I put the official diagnosis down for those of you who might understand it but basically it's a tiny hole that is there when babies are in utero but goes away around the time of birth. Hers hasn't gone away (she is among 25% of the population who has this condition) but it shouldn't cause her any harm. They want to see her back at one year and they said all surgeries should proceed as scheduled. Hallelujah!
While I was waiting for the doctor to come and give me the results of the test I overheard the technician talking about the hole in Jordan's heart. The doctor asked her if she had told me yet and she said no, that she was going to let him tell me. I have to admit that I went from feeling certain that there was nothing wrong to now being once again anxious and dreading the news. I reminded myself that God is in control and that His hand is absolutely on Jordan's every need. He calls us to not be anxious and I was determined to be obedient. Yet another lesson in trust, yet another example of his faithfulness (faithfulness in giving me peace, not necessarily in changing the circumstance).
Merry CHRISTmas to all of you and a reminder for the reason we celebrate!

Thursday, December 07, 2006

Hello everyone! We wanted to give you a quick update on Jordan's recent events, appointments, praises and prayer requests.
She's now 9 1/2 weeks old and weighs almost 10 1/2 pounds. The doctor's are very pleased with her weight gain and her head growth but they're keeping an eye on her length. Her weight and head size are in the 50th percentile but her length is less than the 3rd percentile. We'll be watching that over the next month or so.
She enjoyed her first Thanksgiving - in her pretty dress with her cowgirl boots.
She got to get dressed up again this month for her dedication at church. Shannon and I stood before our church family with our pastor and committed ourselves to doing our best to raise Jordan to know and love Jesus as her savior. It was nice for people to see her and be able to start or continue praying for her health as well as her salvation. We are so blessed to have such a wonderful church home! We were also presented two prayer blankets from our church that were beautiful. Thanks to the Compass Prayer Team for those and for always wrapping Jordan in prayer.

As for doctor's visits...
CHOC Craniofacial Team:
We went for our big appointment at CHOC to meet with all 8 specialists at one time. While we were there we met a couple other families with babies who have cleft lip and palate. It was so nice to realize we aren't the only ones dealing with this and to also be able to ask them some pracitical questions about what they're experiencing.
At the appointment, the audiologist and ear nose throat doctor found that Jordan now has a conductive hearing loss in both ears (due to the fluid that will drain once they put the tubes in in Feb.). They don't seem too concerned with it.
Everything else was status quo with the rest of the team. As of right now, her first surgery is scheduled for Februrary 2nd.
They will close her lip, put tubes in her ears, detach her thumb from her hand where it's still attached, detach her foot from her leg and cut the banding around her calf (zplasty) resulting in a cast on her leg until it "sets" and heals. The surgery scheduler thinks it will be about a 5 hour surgery at CHOC in Orange.
Spinal Ultrasound: We went to CHOC at Mission a couple weeks ago to have an ultrasound done of her spine since the Orthopedist thinks the cord may have become tethered but the technician said she thinks it looks fine. We're waiting for the official okay fromthe doctor but we're assuming it's fine.
Heart Ultrasound/Echocardiogram: Jordan will go in December 15th for an ultrasound of her heart because the doctor thought she heard "something." We are thinking it's fine as well but will have it checked out just in case.
General Health: Jordan now has a pretty bad cold. She is coughing a lot and her voice is really hoarse (so sad to hear her cry like that ). She's been pretty fussy through it but the doctor's say it's a common cold. Our doctor has suggested we give her the Synagis shots to prevent RSV (some serious virus that premature babies can catch) since RSV would be exacerbated by her palate issues and could postpone her surgeries but they are very expensive. We're praying right now that we'll know whether or not we should do the shots and if they're worth the money.

+ Her ultrasound of her spine looks good so far.
+We're meeting other families with children going through the same thing and are able to share with them the source of our strenth - trust in Christ.
+Jordan is on a great eating/sleeping schedule, is steadily gaining weight and is now sleeping between 8 and 10 hours a night. Praise the Lord!!!!

- That we won't be anxious as the surgery date approaches.
- That Jordan will get over this cold and that the rest of the family will stay healthy.
- That the heart ultrasound comes back fine.
- That we'll know whether or not to get her the RSV shots.
- That Jordan's length will increase and catch up to her weight.
- That I will continue to better manage being a wife, mom to both kids and also be able to take care of making her appointments, handling insurance issues, doctor's offices, etc.

Thanks for checking in!
We'll post an update in a few weeks. :)
Shannon, Jen, Noah, and Jordan