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
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
Wednesday, November 08, 2006
We met with only the preliminary part of the CHOC Craniofacial Team on Halloween.
The nurse answered any questions, gave me a breakdown of the surgeries and procedures and also showed me pictures of a boy with nearly the exact same size cleft before and after. It was amazing and so encouraging. I really can't imagine Jordan with her lip together so it's hard to believe it's going to actually work, even after seeing that boy's pictures. The nurse said she'd guess we'd have the surgery late December or January. I think that's being too hopeful. My guess is more like January/February, maybe even early March.
The genetic counselor took our family history and risk factor info then explained what the geneticist will be looking at. God was so gracious yet again for giving us this counselor. I spent 20 minutes or so with her and didn't even notice until she was on her way out the door that her hand was deformed. She only had her thumb and her pinky yet I didn't even notice! I was so shocked I didn't even ask her how it happened. It looked like it was birth defect and therefore made me think of Jordan's hand and the possibility that it isn't going to be the first thing people notice about her when she's older (or the second or third thing they notice - after her lip and her foot :) ). How encouraging!
The geneticist looked at Jordan, asked questions, looked at reports and measured various parts of her body (eg. space between her eyes, position of her ears, size of jaw, etc.) and determined that all of Jordan's issues appear to be purely physical and obviously caused only by the tears in the amniotic sac! Praise God again! We were worried about a syndrome that could affect her cognitive development.
When I first got to CHOC I was really sad. I couldn't believe that I am now a mom taking my child to a children's hospital. As I was walking in I saw kids without hair, in wheelchairs, etc. and I realized it was Halloween. While I was there the inpatient kids who were able, dressed up in their costumes and the staff had them in a parade through the hospital. I saw kids in costumes being pushed in wagons, and wheelchairs, parents dragging IV bags and oxygen tanks behind their kids and I realized that I have nothing to complain about. God has been so gracious to us! Our children are not dying and they are not sick. What a blessing!!! We should all be so thankful!
Speech and Hearing:
Today we had the big hearing test for little Jordan Joy. It was a very stressful day trying to keep her awake all morning then on the drive to Orange (she needed to sleep through the two hour test or else we'd have to go back). We actually made it and she slept the entire testing time. We were really nervous but found, once again, that God continues to be so merciful. She passed the hearing tests in her right ear and showed a hearing loss in her left ear. However...the hearing loss appears to be fluid from the cleft palate and should be corrected when they put tubes in her ear during the first surgery (these tubes are very common and so many kids even without cleft palate need them to drain the fluid).
Thank you all for your prayers and your support. Most of all thanks for bearing with me while I continue to catch up on thank you cards, phone calls and emails (I have 50 unread emails in my inbox at the moment if that gives you an indication of how busy I've been). We are so thankful for all of you and will continue to update you.
Our next appointment is with the entire team (the last one was supposed to be with everyone but they changed it). It's on November 29th. They'll give us the okay for surgery that day and the following week we should get our surgery date.
We should be meeting someone from Regional Center of Orange County in the next few weeks too. They'll come to our house to make an IFSP (Individualized Family Service Plan) which identifies our needs and then how they can help us. It's free and offers tons of resources for us until Jordan is three years old.
Here are some photos that may give you a better idea of what the bands are in utero. They're pictures of a newborn that still has bands attached that the doctors needed to cut.
Cut and past it into your address bar.
Thank you again everyone!!!!
Thursday, October 19, 2006
We're still trying to adjust to life with a newborn (sleepless nights, grumpy days, a messy house, etc.) but in the meantime we've had quite a few doctor's appointments to tell you all about.
Since Jordan failed her hearing screening at the hospital we went to the Ear Nose and Throat doctor (ENT) to have her hearing re-screened/re-checked. She passed in her right ear but still failed in her left ear (the cleft-affected side). They referred us to an audiologist who will do an ABR (Auditory Brainstem Response test which puts sound into her ear and then tells us if the brain registers the sound) to find out if she has a hearing loss. Praise the Lord it will only be in one ear if there is a loss. Also, praise the Lord that I have my Master's and credential in deaf education and tons of wonderful co-workers who can help us decipher all the test results and use their contacts to help us. Who would have thought???
Plastic Surgeon - We met with Dr. Sundine who wants to release the foot and the thumb and do a procedure called a z-plasty to loosen the constriction band/ring on her leg where the foot is attached. He suggested doing it in a few weeks. He also suggested doing the lip adhesion surgery in 3-6 months.
Pediatrician - The doctor said she's gained one full pound in one week which is fantastic. She said she seems to be doing well but has a "click" in her hip that she wants the orthopedic surgeon to look at.
Orthopedic Surgeon - We met with Dr. Rosenfield today who suggested we release the foot and thumb and loosen that constriction band on the leg during her lip surgery in a few months rather than next week. He feels the risk of anasthesia outweighs the risk of the constriction rings and tied foot and thumb. He said that he will do the surgery with our craniofacial/plastic surgeon and will cast her foot afterward to help it go back to a normal position. As much as we'd love to do the surgery now to release the bands we are nervous about anasthesia so we'll probably wait. He also noticed a "cleft" in her low back which could indicate a tethering of her spinal cord. As she grows that tethered spinal cord could pull and cause permanent neurologic damage, paralysis and loss of bladder and bowel control. He suggested we monitor it by MRI to operate on it before damage occurs. We were very discouraged to hear this. It seems that every other appt we get more bad news. It seems we should be thankful that she has the hand and foot abnormalities because if she didn't we may not have found the spinal cord tethering which could have been disastrous.
We got an appointment to meet with the entire CHOC Craniofacial Team. On Halloween we'll meet with every specialist on their team including but not limited to her facial surgeon, orthopedic surgeon, audiologist, speech therapist, oral surgeon/dentist, social worker, geneticist, etc. in one long appointment. Once we leave they will sit down together to work out a plan for us.
Overall we're tired and overwhelmed with the doctor's visits but encouraged that things are starting to happen. Insurance hurdles seem to be working out and we're getting dates on the calendar for upcoming procedures. We're still getting meals from our friends and are so thankful for the extra time that leaves us for doctor's phone calls, a little housecleaning, time to rest and especially time to spend with Noah during such a transition. Thank you to everyone who has signed up to bless our family with food. We are so appreciative. We've had some very trying days where we've been at the end of ourselves but we realize that we can do all things through Christ who strengthens us - the support from our friends and family helps too. :)
If you've called us, sent us an encouraging card or email or have dropped off a gift please know that we are so grateful and that we will call you back or reply to you as soon as we can. Things are really starting to get back to normal (a new normal for us) and we are slowly but surely managing things better and will get back to you. :)
We will keep you posted on any new updates as we get them. Thanks for checking our blog!
Wednesday, October 04, 2006
Praise the Lord!
Jordan Joy Gray arrived four weeks early happy and healthy. She was born Saturday, September 30th at 2:14 p.m. weighing in at 5 lbs 9 oz, 18 inches long. God was so gracious and merciful in giving us only a six hour labor with about 15 minutes of pushing. Daddy was in the mountains at a men's retreat but made it just in time for the delivery. Noah was well taken care of by friends and family this weekend and he seems to be adjusting fairly well to the new arrival. He was sick when we got home with a high fever but is doing much better. So far he's been really helpful, handing us his diapers for her and trying to give her a bottle. :)
As for Jordan - We were a little sad to see that her mouth is a bit worse than expected but so glad to see that her extremities are better thanwe thought. It appears all the bones are there in both the hand and the foot. Due to the amniotic bands (strings that formed from the amniotic sac that wrapped around various parts of the body) she has webbing of the fingers and "bubbles" of skin, as well as constriction rings on various limbs, fingers and toes and of course the cleft lip and palate. However, she has ten fingers and what appears to be ten toes. The foot seems to have been "tied" to the lower leg so we're hoping they can release that soon to get the foot moving.
Since the delivery was such a surprise I didn't have my camera charged so all the pictures taken are on other people's cameras. As soon as we get them we'll post more shots and add some clear pictures of her hand and foot. Until then, thank you to everyone who has taken their time and energy to support us since Jordan's arrival. From prayers to meals to preemie baby clothes, diapers and even the giant pink stork in our front yard that announces Jordan's arrival. :) You are all so special to us and have made this such a "joy"ful time. :)
The Gray Family
Wednesday, September 27, 2006
We do have our final ultrasound this Friday at 1:30 so be praying that we get some great shots of her face, hand and foot.
A verse that I (ironically) just saw sitting on my desk is Psalm 94:18-19
"Your mercy, O Lord, will hold me up. In the multitude of my anxieties within me, your comforts delight my soul."
Check back Friday for another update and for more ultrasound photos (Lord willing). :)
Thursday, August 31, 2006
On a fun note - we're painting and setting up her room this weekend when Pop Pop, Gma and Uncle Scott fly in from Maryland to help. It should be fun to work on together and exciting to see her room all ready for her arrival.
Thanks for checking in!!
Wednesday, July 19, 2006
Here's a shot of both of
They have been unable to get a clear picture of her affected hand (the left hand) but will hopefully see it a little better on the next ultrasound.
Here's the 3D image from our 20 week ultrasound. You can see from the picture that
Thursday, July 06, 2006