Wednesday, October 31, 2007
Tuesday, October 30, 2007
Dr. Jones "cast guy" was able to get us in to redo her casts in L.A. while we were up there. He did a great job with two soft casts that really seem like they'll stay on. She didn't crawl on them tonight but we'll see how tomorrow goes. I can't see her sitting still for long.
Funny story...on the way there Noah started screaming, "Sissy hand black! Sissy hand black! Noooooo Sissy! Don't touch!" He was making his funny gagging sound he makes when something is really gross (like fruits and veggies, haha). I turned around and saw her stitched bloody hand reaching for Noah from her car seat. It was like seeing this Frankenstein hand reaching up for him. She managed to get the bandage we used off. I pulled off in Carson City somewhere to rewrap it only to find that I couldn't get back on the fwy from that exit. I sat in tons of 18 wheeler traffic to get back on going south just to exit and go back north. After that we sat in SO much traffic on the way there due to an oil spill, truck fire on the 405. We were 45 minutes late with no time for lunch. We were sitting for so long on the fwy that I finally got out of my seat to try to feed Jordan. We rushed to Westwood for the casting and thankfully made it only to spend more than 3 hours trying to get home. We got home around 7:00 tonight and Shan had a giant spread of food here from more of our loving church family. WHAT a blessing!
I am off to bed and will hopefully see many of you tomorrow at our church's Fall Fest. Go to CompassChurch.Org to get details or go to Aliso Viejo Town Center to have a free night of food, fun, and tons of activities for the little ones. What a great option for your families instead of the usual Halloween stuff. We'll be there with our little giraffe and kangaroo. So excited!
Monday, October 29, 2007
Noah surrounded by the girls...his Aunt Vel in the middle with cousins Brianna, Josslyn and Jayde and Jordan. Poor Noah. :)
Thank you SO much Gma for helping us this week. We already miss you terribly but are SO enjoying our clean house and stocked fridge. Noah cried last night when Gma left us at the airport. He was really sad but thankfully Gma will be back next week.
Sorry we haven't posted anything recently but it's been a little bit of an adjustment. My mom left last night and Shan's family and my dad came over yesterday to see us. It was great for the kids to see everyone and for the cousins to see that Jordan is doing so much better. She woke up about four times last night but we let her cry for a bit and she eventually went back to sleep. We woke up this morning at 9 a.m. even after apparently turning off the 6 a.m. alarm to get up and do my bible study. The whole house was sound asleep until then. We woke up Jordan and Noah at about 9:15. I think everyone is recuperating, not just Jordan.
Noah and I took Jordan to her pediatrician today for a blood test which came back great. Her body is making new blood to replace the lost blood so quickly. It looks like we won't need any medication for it. He also re-wrapped her foot since the first larger wrap was coming off. Tonight though, her giant arm cast came off. Yep, her little arm just slid right out and her stitched up fingers were out in the open - I thought I was going to faint. Thankfully Shan was there to help because I had a hard time looking at them much less touching them. We couldn't get the cast back on so we just re-wrapped it ourselves. It's much smaller but now doesn't have the protection when she cralwls so I'm not sure how we'll keep her from hurting it.
Tomorrow Noah and Jordan and I will head to Santa Monica to see Dr. Kawamoto, her plastic surgeon so he can check out her palate and her eye. I'm going to ask him details of what he did to her face because we keep looking at her nose trying to figure out what he did. We think he built it up, making it not as flat and he obviously pulled that left nostril down a bit too. My mom said that every night last week when Noah prayed he prayed for Dr. Kawamoto. So cute.
We really are so thankful that our worst fears that night after her surgery weren't true. Just having a few minutes where I thought we were losing her makes her (and Noah) that much more precious to us. As she was cracking me up today it just kept hitting me how much she adds to our family and what a blessing she is to all of us. We are so thankful to the Lord that she made it through and that the doctors took precautions when they saw things weren't going well with her. It's been bittersweet coming home because I am really missing the nursing staff and doctors in the PICU. I also miss the families that were there that I bonded with and I'm wondering how they are making it and how their kids are. I think of them all day long and wish I could see them. I would love to share with you all someday the things I/we saw there so that you can also gain the perspective we gained in regard to struggles and hardships.
Thanks again to everyone for your help and prayer.
Saturday, October 27, 2007
We were so excited to get home and get some rest, get clean clothes, see Noah, etc. however Jordan seemed to do better in the PICU than at home. She is totally a stomach sleeper but has had to sleep on her back propped up, with her arms restrained so she can't take the tape off her nose. That paired with a little discomfort (I don't think her pain is terrible) she hasn't slept more than one hour straight. All night she would finally fall asleep only to wake up again crying. We tried rocking her, rubbing her chest, singing, playing music, putting her in our bed, feeding her, giving her Tylenol - everything. Today she didn't nap but 30 minutes or so and cried a considerable amount of time. Finally tonight we gave in and gave her Tylenol with Codeine which didn't even work. The girl is on narcotics and still won't sleep. We decided to try putting her on her stomach and just not worrying about the tape. If it comes off it comes off. She immediately fell right to sleep and hasn't woken up yet. I am hoping to have a solid night's sleep even though we have now stayed up late talking with my mom.
As for her health and recovery...she seems to be doing really well. Her pain seems more like discomfort and is managed with Tylenol and Motrin although I do wonder if it hurts because she doesn't really want her bottle. She is VERY lethargic and very pale which I think is due to the blood loss. Her levels were still low when we left so they told us to see our doctor on Monday for a test to see if we need medication or can make it slowly back to where she was before the surgery. She doesn't seem all that sleepy, per se, but she really just lays back and stares off. Kind of sad but still an improvement from a few days ago when she stayed asleep constantly and had a machine breathing for her. Yikes - what a week.
Next week we go for a few appointments so I'll update on prayer requests soon. I'm also going to post a video clip of her crawling with her big casts on her arm and leg. It's really funny. She's surprisingly good except on the wood floors where it's slippery.
Take care all of you!
Also, for those of you who know Carrie Steele it's her birthday tomorrow! (correct me if I'm wrong Carrie) We are so blessed to know you and are so thankful for you (the Baja Fresh was great tonight, we devoured it). :) :)
Friday, October 26, 2007
My mom did SUCH a great job holding down the fort here at home. She was constantly cleaning up dust from the fires that has settled in our house, she was playing with Noah giving him much needed attention, she stocked our fridge, our pantry, she cleaned up the house and even completed our job of potty training little Noah. She even bought a new rug, some new candle centerpieces and a new table runner for the house. How fun! What a trooper. We're sad that she can't stay another week so we can have the time to visit with her that we planned for originally but we will see her in two weeks when she comes back for the weekend.
We are hoping to sleep in a little, lay around, spend time with both kids and my mom tomorrow. Jordan is still really weak and lethargic (they think it may be due partially to the blood loss - her blood level is still low and we'll get it checked Monday) so we won't be going anywhere. Sunday our family is coming over. Shan's mom was at the hospital with us most days and I'm sure is looking forward to seeing Jordan doing better and I think Shan's nieces would like to see a healed Jordan looking more like herself after seeing her pictures from this past week. I'm dying to get to church with the family but next week may be our soonest to get everyone there together. We miss you Compass!
Thank you SOOOOO much everyone for all you did for us. You may think you made minor sacrifices but they were HUGE for us. As I said before, people were continually blown away by all of you and your support for us. I can't even think about it or I cry. This week has been terribly long and has had some very trying moments. We're so happy to have it behind us and to be able to look back and see so clearly the ways God sustained us through it...amazing! I could tell you story after story all night but I should get to bed.
We will see you all soon, hopefully - Thrivers: We will see you Thursday night, Lord willing!
Pastor Dale: I called you on our way home tonight but your voicemail didn't come on.
With love and gratitude,
Thursday, October 25, 2007
As I was walking back into the unit so elated that our girl is back I ran into another mom I met while sleeping (if you call it sleeping) in the family room. She was crying and said she couldn't talk but that she'd talk to me tonight when we go to bed. Thanks to Megan and her sister Laurel, we are staying at a hotel and I feel terrible for this mom. It is so hard being here knowing that Jordan will be going home and will get better when I know that is not the case with some of these kids. I feel guilty that we are staying in a hotel, I feel guilty that she is doing well and also that we are leaving tomorrow. It's really a tough situation. Please pray for these families. They have SUCH sad situations and many of them only have hope in these bodies in this lifetime. My hope comes from a God who loves me, who created me in His image and who has called me according to His purposes. Such comfort! Pray for their children's lives and also that they would all, sooner rather than later, learn to trust in Christ as their salvation and sustenance.
So very thankfully,
Okay so we will keep you posted. As soon as the tube is out we'll post an update and hopefully a little video. :) :)
Pray that the extubation goes well and that her throat has gone down enough to leave it out.
Pray that she is able to eat soon and that Shan gets home and back safely.
Wednesday, October 24, 2007
She is doing great! She is totally relaxed, and not at all in need of any medication except Tylenol (no codeine, just straight Tylenol). Even when we turn her, suction her, and pound on her chest to loosen the fluid up she is so mellow. Tonight the nurse was hitting her chest to loosen stuff and while she was doing it Jordan fell asleep! I have to wonder if it is simply an answer to prayer that she would be comfortable and relaxed. She didn't even gag or cough from the tube tonight.
The respiratory therapist was here a few minutes ago and said he still doesn't hear an air leak (meaning he would guess it's still swollen) but that they will decide whether or not to try to remove the tube tomorrow. If they remove it tomorrow morning we will still not be home until Friday evening. If it's removed later than that obviously we'll be home later.
Okay, we're going to watch a movie on the laptop and then get to "bed." I'm on the reclining chair tonight and Shan is in the car. Ha. I keep waiting for a security guard to knock on the window and tell him he can't sleep in his car. So funny. I just found out tonight from another mom that there is a shower on the floor for us to use! SO excited!
Okay- will post more tomorrow morning when the doctor's decide about the tube.
Tuesday, October 23, 2007
free nights stay at a hotel that she earned with her credit card points (she says it's not a sacrifice but she gave away a date night so we could get some sleep). Gabe and Staci came with a big bag of new clothes for me from Target, two pairs of shoes, one of my favorite magazines, candy and gum. They also came with a little gift bag...I can hardly type it without getting teary eyed - Megan from our small group bible study organized people from our group to get money for restaurant gift cards while we are here. Gabe and Staci did the shopping. They intentionally went to local restaurants here in Westwood that we love and got gift cards with menus so that while we are here we can get out of this place to get fresh air and good food (greasy chicken noodle soup from the cafeteria is only good the first 5 times). :) Everyone has blessed us tremendously with offers of help and of service as well as notes and calls of encouragement and reminders to lean on God's provision when we are tired and stressed. My mom has been home taking care of Noah and plans to this entire week until we get home. Granted, Noah will need some re-training afterward (yes he is surely enjoying his freedoms with G-ma) but we are so thankful he can be in his bed and at our house with her while we're here. Shan's parents were also here the entire day with us yesterday and Shan's mom and sister came today to spend some time here even though his sister has major back pain. All of you are so sacrificial in your service to others it is humbling to have it directed our way and really tough to accept at times.
I can't tell you all enough, from the bottom of my heart, how much I appreciate you and how much the love of Christ shows through you and is an example to me. We are constantly telling the hospital staff about you all and they marvel at the support.
THANK YOU! THANK YOU! THANK YOU!
We love and miss all of you and can't wait to see you again and for you to see and hold Jordan.
Also, the care plan for now is to assess tomorrow morning and see if she is able to breathe on her own and if so then begin to wean her from the ventilator. Since the tube is stitched to her lips and there is a string holding her tongue to the side they may need to take her to the operating room to do it but we would love prayer that she doesn't have to go down there again. Once they take the tube out and she is on her own they may keep her in ICU for a night or they'll send her to the regular room down the hall.
We'll let you know tomorrow morning what they decide.
The Gray Family
Monday, October 22, 2007
Quick update before they call us in...I'll post pictures tonight once we get settled so you can see them. Please look at them before you show your children, they may be graphic.
Palate: Repair went well. He found a "very strange thing" that is a tooth but looks nothing like he's ever seen. It was apparently hidden in there. I'm wondering if it was her adult tooth that was deformed up there and now will have to be replaced...hmmm we'll see. Her tongue is stitched to her cheek until at least tomorrow I think so that if she chokes they can get it. Weird thought huh?
Nose: He ended up "starting" on the nose revision. He started the "lengthening" process, bringing down her left nostril which was higher than the right due to the first repair. He'll do more work on the nose over time.
Bump on eye: He cut that little bump on her eye off and found that it was attached to a thick, tough line of scar tissue (pretty much confirms the fact that the cleft was caused by the amniotic band - he's said that in the past but I still wondered and therefore worried that we could or Jordan could have a child with a cleft...this rules that out). He said the scar tissue under there was causing the pull down of the eye. He'll work more on the eye later when he goes in to work on the tear duct.
Tear Duct: Okay this part is confusing because I don't understand how the eye works and the ducts but I'll try to explain it. He probed the blocked tear duct and found that there is a hole for drainage, there is a top part to the duct but the sac in the middle is missing and I think he said that there is a bottom part to the duct that drains the fluid down into the nose. He will have to create an artificial duct/sac but can't do that until she is like three or so. At that time he will reconstruct her left eye that is pulled down. If he tries to do the eye now it will just have to be redone later anyway when he does the tear duct construction.
So she came out of surgery at 6:00 and they said it would be 15 minutes until she was in recovery and now it's been an hour and a half. We're very frustrated and a bit concerned.
We'll post more later.
Okay so scroll down to see the first pictures I posted then scroll back up to these.
We got up at 3:45 to get ready and get out of the house by a little after 5. Poor Jordan didn't nap all the way here and hadn't eaten since 10:45 last night. We were thinking they'd take her in by 9:15 or so...not the case. The surgery before us went really long so they didn't take her in until noon. Basically they are working on all the things we posted before (see below or the archives) but surprisingly the plastic surgeon said that he is going to "try" to work on her eye and nose if he can. I assume that means he needs to see how well the palate goes and the tear duct - like how involved it is and how long it takes. Right now their best guess is 2-2 1/2 hours for each surgeon. That puts her out of surgery at 5:00 tonight. I would guess she'd be in PACU (Pediatric Recovery Care Unit) for at least an hour and hopefully into her room after 6:00 sometime. This morning was difficult for me to send her off to yet another surgery knowing what she was facing but by the time they finally took her it was a relief that we were getting started. She was, of course, smiling and happily going to the anesthesiologist so that made it easier.
I think I accidentally erased the photo but I took such a great one...Jordan in her hospital gown sitting in the baby hospital bed wearing her sunglasses. As I put them on she started smiling and waving behind me. I was laughing and finally turned around to see part of the team of doctors standing there cracking up at her in her shades. :) Funny! She is so hilarious and was making us laugh all morning. Such a good girl too not even crying or fussing without food or sleep.
Okay so we will update you all through the blog as we find out how things are going. We have wireless internet access in the lobby and also can use our cell phones. You can post comments or email too.
Thank you all for praying faithfully. We are SO appreciative.
Friday, October 19, 2007
Okay so I started out this week not looking forward to our isolation. I love getting out of the house even if it's just to run errands and the thought of not leaving the house for seven days as we simply sit and wait for Jordan's surgery...not exactly a fun way to wrap up a dull week in my opinion. However, God has been so good to change my perspective completely and also to bless me with a few little outings (even if it was just the grocery store at 9 pm after the kids were in bed). As the potty training forced me to simply be near Noah I found myself enjoying spending time with him doing things he likes to do...read books together, play cars, build towers with his Wedgits and Legos, dance and sing to our favorite cds. Thursday morning Jordan, Noah and I were having such a great time dancing and singing that it really hit me how blessed I am to have this time with them. Today I used a gift card we got for Jordan's birthday (thanks Tobi and Brett!) to get a few fun things from Target's $1 section. I got a bunch of masks and dress up type things. It was so fun. The pictures above were taken after bath tonight. We were laughing so hard.
Barbara from our church's Prayer and Care Team called to get the specifics for the faithful prayer warriors at church and it hit me that her surgery is only a couple of days away. It made me that much more thankful for God's perspective of cherishing every moment with our children and realizing that they are truly GIFTS from the Lord. Jordan has added so much to our family and is such a joy to have. She is hilarious and such a reminder for us to encourage others to trust in God when circumstances make us doubt. Since her first birthday I've thought so often about the days when the doctors continually offered "termination of the pregnancy" as an option. If only they could see her now huh?
Wednesday, October 17, 2007
The struggle at this point is going #2. He is having a real struggle with this. Yes, you will all want to wear shoes the next time you come to our house. :)
We will update the blog one more time before we go to surgery on Monday morning - thanks for checking in.
Monday, October 15, 2007
Friday, October 12, 2007
Thank you for praying for the Fieldhouses if you did today. I saw them this afternoon and got to see little Tessa. It brought back so many memories from Jordan's first surgery and made me so thankful to be able to visit them and do what little I could to support them. Their surgeon removed some bone and moved the front of her mouth back. He also connected her nose to her lips but is going to wait to finish the lips for a few months. Keep praying and check out their blog for updates.
I took Jordan to UCLA this morning for her pre-op with her hand surgeon. He is hands down (ha! No pun intended), the nicest, most down to earth doc we've got (although we love all of our doctors and specialists).
Here's the procedure plan...
Henry Kawamoto - Plastic Surgeon
- Closing the palate
- Removing the small bump by her affected eye
- Clearing her blocked tear duct in the affected eye (it may end up being more than a simple clearing of the duct, depending on what he finds in there)
Neil Jones - Hand Surgeon
- Seperating her index and middle fingers on her "bad" hand and widening the web spacing between her pinky and ring finger on that same hand. She'll have a cast up past her elbow for two weeks.
- Her toes will be seperated and "cleaned up" on her bad foot too but no cast will be put on. He'll just wrap it well. I'm concerned about her foot not being protected while she tries to crawl around (I wonder how she'll crawl w/ a cast on her arm. I guess I'll have to post some videos on the blog. :)
It sounds like the surgery may be around four hours and will start first thing in the morning Monday, the 22nd. We aren't shutting ourselves up in the house but we're avoiding the nursery and hoping both kids stay healthy.
Also - we're embarking on a new chapter in our lives...we're starting potty training on Monday with Noah. Yikes. I'm SO sad that my baby is going to be wearing underwear! No more rustling diaper sound when he runs around the house! I'm really dying over this. I know that they can't stay little forever but this has just flown by. We shall see how it goes. I have a feeling it's going to be full of some funny stories so check back often for updates. :)
I hope this finds you all well!
Thursday, October 11, 2007
Here are the FACTS: - The surgery will take place this upcoming Friday (October 12) at 7:30 in the morning.- It will take from 1-3 hours depending on how well it's going.- Procedure: right now Dr. Wells plans on taking a piece of bone out from the roof of Tessa's mouth so her upper lip will drop down and back a little bit. If he feels that it looks good, he will then put a metal pin up through her lip to help stabilize it. He then will POSSIBLY close one side of her lip (the closer of the two). This is new information to us. We thought for sure that he was going to close 1 side of her lip...he told us that he would like to have "options" depending on how things go. We like the conservativeness of Dr. Wells. If he needs to go slower to make it look just right, so be it.- Tessa will most likely spend 1 night in the hospital. They only allow 1 parent to stay with her, so I am going to stay...I (Allison) will most likely sleep better in a hospital setting.- As soon as Tessa is out of surgery she will have to wear arm restraints for 2 weeks. :( Poor thing! She's going to need all the loving she can get...so everyone is invited over to the house to help cheer her up and give her EXTRA loving. Thankfully she'll have BOTH grandmas around to spoil her. Yes, my mom is coming out on the 14th to spend 4 days with us. :) We are so excited!- Feeding will be yet another issue. Her obturator is coming out this Wednesday and we're going to go back to the sirenge feeding days. Again, 2 weeks of this. Hopefully she'll adapt well.
Please, please, please keep us all in your prayers this week leading up to Friday.
(Tessa: bravery, quick recovery, little pain Us: confidence in Dr. Wells, acceptance of Tessa's new look, patience with the journey we are about to embark on, FAITH Dr. Wells: a steady hand, wisdom, a clear vision of what Tessa's lip will/should look like)
It gives me so much hope knowing that God is in complete control and knows how all of this is going to turn out. Fortunately none of this is in our hands but in His. Sure, it's going to be very difficult getting used to a new look on our precious little girl's face, but no matter what she looks like, she's still going to have the sweetest spirit glowing all over her face!
Wednesday, October 03, 2007
Well, thanks so much for your prayer for our appointment. The doctor got my hopes up by talking to his colleagues about how he is going to do the eye, also that he will fix the nose and the lip. He was talking as if he already planned on doing it during this surgery. I was ecstatic. I was thinking, "God you are SO good! I didn't even have to ask!" However, when he was all finished he told the nurse to schedule surgery for her tear duct clearing, her palate and just the little bump on her eye. I was so confused. Apparently he was just saying what he would "eventually do." I was completely deflated. I asked him if he would do it, he said he wanted to wait to repair it until later but didn't really seem to have any good reason for it. I instantly thought of something my father-in-law said recently. He was talking about how quickly we say how great God is when things go well/go our way but how slow we are to talk about His goodness when things aren't so great in our lives. Here I was being the classic example of that. I was certainly NOT "rejoicing always" or giving thanks in 'everything' as 1 Thesselonians 5:16 tells us we are to do (in fact that's the verse Sarah used for the devotional at Jordan's shower - how appropriate). Here I was disappointed and pouty like a child not getting my way. Rather than rejoicing in God's sovereign hand in my life I was fearing things of this world...that our insurance wouldn't cover Dr. Kawamoto later, that he would retire, that Jordan would be emotionally scarred by the things people say...I could go on but basically it was a lack of trust on my part. I am disappointed in my response but thankful that we have God's word to fall back on and to correct us. 2 Timothy 3:16-18 says, "All scripture is God-breathed and is useful for teaching, rebuking, correcting, and training in righteousness so that the man of God may be thorougly equipped for every good work."
After the appt Noah and Jordan and I went on to Palmdale to visit my family. My grandma has Alzheimer's and Parkinson's so we are really making an effort to get the kids up there more to visit. Noah LOVED it and had the best time! He went to my dad's house first and learned to feed the horses and mules, learned about gardening (of course he would not eat the veggies), led the horses around and even sat on a couple tractors. He and Jordan were such a joy for my grandparents and I hope, a breath of fresh air like they are to me, with their exhuberance and energy. We got home late last night and are off to Scooter's Jungle with Noah today as a reward for his excellent behavior at the doctor's yesterday. He was such a blessing!