Surgery Update

One more surgery down. As a quick recap...we usually visit our specialists every summer to check in and this summer I expected nothing to come of it. When we saw her orthopaedic surgeon he surprised us by saying that she needed a surgery right away to prevent her tendons from causing her surgery to be more difficult next year. The tendons on top of the her foot are pulling up on the under side of the foot.

We scheduled it for Oct 1st thinking we'd then have several weeks before the baby was born.

My doctor found at 33 weeks that I was in pre-term labor and put me on bed rest and medication. I was on bed rest until the day of her surgery which was 37 weeks. I still needed to continue with meds and rest though so that I could get her settled in school afterward and have a little time to figure out how to take care of her. I'm now 38 1/2 weeks and I've stopped progressing. Go figure! :)

The best thing is that her surgery went well. He cut the tendons on the top of the foot and pinned her big toe in place. She'll be off her foot for six weeks and we'll go back three weeks post-op to check the pin, and change the cast. The third day after surgery we saw that the pin is coming up but our doc said to just cover it up and leave it. We are managing fine with the cast although it's tiring for me, especially after being in bed for six weeks. I'm curious how it'll work once the baby arrives.

This surgery was harder than in the past because she's older and more aware. It was easier when she was younger and I knew that the understanding wasn't there. Also, as the years go on we grow to know her as her own person with feelings and a mind of her own. Another thing that is challenging is ironically the fact that we aren't in the midst of constant surgeries and therapy. We've had 18 months to just enjoy her as a typical kid. It was nice to have these things behind us but then to realize they aren't completely behind us or her is difficult. Thankfully she handled it well and wasn't in any pain after the first night. She thinks it was a little fun even. She crawls all over the house and is so content regardless of how long she has to sit.

On the way to UCLA at 5:30 Oct 1st (the day after her 4th birthday). We took Noah out of school to go with us (yes, he's in Kindergarten already!).

Waiting....

You can see how her toes pull up. If you look back through the archives to when she was born it's crazy to see her foot from then to now. It was completely flush with her leg and her toes were attached to her leg.

This is our brilliant surgeon, Dr. William Oppenheim. It's been a long road getting insurance to allow us to see him. We're so thankful for him.

Heading in for surgery...gotta love that anti-anxiety med they give.

I had to capture a picture of this one. After every surgery as she's waking up she is mesmerized by the oxygen monitor. It's really funny.

I love this one. This is after she's awake and I finally feel relieved that she is comfortable and her happy self again. This is usually when I breathe that sigh of relief after every surgery.

She's trying to give a thumbs up but only manages to get it halfway up.

Usually they let Noah in when she's recovering but this time they didn't so he was super excited to see her when she was finished. Shannon and Noah were waiting for the car and when he saw her come out he ran to her so excited and kept hugging her. It was SO sweet!

36 Weeks

Tomorrow I am 36 weeks along in my pregnancy.
I went to the doctor this past week again and she said that I'm now nearly fully effaced, the baby's head is at a zero station (fully in place) and I'm still dilated 1 cm. I'm taking Terbutaline twice a day and I'm still on modified bed rest. I've been driving the kids to school once or twice a week and I've, for the most part, rested otherwise. My labor/delivery bag is packed. My hospital bag is packed. The baby's bag is packed. Anytime I leave the house to drive the kids to school I make sure I've showered and I'm dressed because I find myself nervous that I'll go into labor while away from home and won't be able to make it back to get "ready" for labor. A girl needs her hair washed and her nails painted - can't we all agree on that?? Funny.

I've spent a month trying not to have this baby and I am still not wanting her to come just yet but at the same time I want to get excited, to nest, to anticipate her arrival with busy-ness and preparations. She continues to be nameless at this point too. We've decided against our first choice, Charlotte (Charly) so we've gone back to the drawing board and I'm just contentedly praying for God's will to be revealed. I think of Psalm 139...I'll copy the entire Psalm another time but wanted to highlight this section:
"All the days ordained for me were written in your book before one of them came to be."
I know that God has a name chosen especially for her with a labor story all her own in His perfect timing, His perfect will.
That Psalm was a stronghold for me four years ago, nearly to the day, as I was preparing for Jordan's delivery. I was SO full of uncertainty, wondering what she would be like, what life would hold for her and for us as a family. It was a time of sadness mixed with growing joy as I grew in my understanding of God's character...His sovereignty, His love, His grace, His rule over us as people who exist to glorify HIM and not ourselves.

It's such a strange mix of feelings approaching Jordan's birthday while at the same time anticipating the arrival of her sister and yet preparing for another surgery for her at the same time.

Her surgery has been approved and is set for October 1st. She had her pre-op appt today combined with her four year old check up and everything appears to be set for next week. Of course God only knows what the next week will hold but I know that I'm praying to keep this little sister inside until after Jordan's sugery because I couldn't bear to miss it and although she adores her daddy there is nothing like having Mommy there for her surgeries. They've become so routine for me that I just have a system and a way that we do it. I know the scripture that comforts her, I look forward to the chance to point her to the love of Christ during times of need and to see prayer in action as she suffers. I am praying daily that God would allow me to be there. As Noah has grown I've loved the chance for him to be there with us, to be used to encourage and comfort her, to grow in compassion and care but I think he'll go to school that day. Today her doctor asked her who her best friend is and she answered without hesitating, "Noah." I almost asked, "Noah who?" Ha! They aren't always the best of friends but I love that she thought of him first.

Details to pray for:
- That this baby could come after Jordan's surgery - even a week or so after so we have time to get settled.
- That the surgery would go well...no problems or surprises.
- That she wouldn't be in much pain.
- That the practical needs would be met/resolved (eg. do we need a wheelchair or will a stroller work?)
- That we would be content regardless.
- Of course, that the perfect name for this little sister would come to us and that we'd both be equaly excited about it.

I'll update next week with a birthday post full of pictures and a recap of Jordan's little life. Her birthday is September 30th.

Disclaimer...I must put in here that I need you to overlook typos and parts that don't make sense in this post. This medication makes me crazy and I find it so hard to be succinct and coherant. If you can all overlook it so can I. :)

Seven Weeks and Counting...from the couch

I MUST begin this post by saying that I feel so badly about leaving the blogging world behind for a while. It had to be done as things were so beyond busy for me but lately as exciting things are happening I've thought a lot about starting up again. I miss my "blog friends" whose pages I read on a regular basis and I miss thinking through my day in blog posts. I can, in large part, blame Facebook for my haitus too. FB is a quick fix on social networking that held me over for a while until I could return here.

Incase anyone is wondering (or even reading this - ha ha) I have suddenly found myself with a lot of time on my hands. I am 33 weeks along in my third pregnancy and officially on bed rest as of yesterday afternoon. I'm 70% effaced and 1 cm dilated with continuous contractions. I guess they are still called early contractions but it's considered pre-term labor because they are causing changes to my cervix. I got a shot of that lovely terbutaline yesterday which stopped things for a while and now I'm relegated to the couch, chair, bed or any other "resting" position. I've been ordered to forego lifting, cleaning, walking much, laundry, etc. I can drive when I need to, I can shower, go up the stairs a few times a day, and basically be up for short periods of time. Sitting is fine and laying is probably better.

Another post and I'll share how I got here spiritually and I will fill you in on the massive amounts of answered prayer I've had this summer. For now, all this sitting around has me tired and ready for bed. Funny how that works. :)

Here are a few pictures of my first day on bed rest...how could I be sad about spending weeks on end with these characters and no distractions???? I love it and I'm realistic about the frustrations that are to come but I'm so thankful to be home with them and not in a hospital alone.

Oh and yes that IS a "scrunchy" in my hair (does anyone even own these anymore??), no I do not have a stitch of make-up on and yes, I'm putting it on the blog. :)

T-Ball

Last week was Noah’s first t-ball game. We’ve been rained out for a few games and nearly rained out yesterday too. Thankfully the weather held out and they got to play. Noah did great and we were surprised at how good these little boys are. When they were in the outfield it looked a lot more like tackle football or rugby as they all ran from their positions, no matter how far away, and they dogpiled, grabbing at the ball. They were filthy by the end and had a great time. Here are a few pictures.

(Here he's the one on the left with the black glove)

(Noah's the one on the right with the black and white glove)

Isn't he such a cutie??? He is really truly a sweet little boy. We're so proud of him and so thankful daily for him as our boy.

Yes it's true...

Yep - a couple of you guessed it. We're having another baby.....Lord willing.
Thankfully this is Shannon's face when I told him the news. We both knew we wanted another one but Shannon was taking a bit more of a leap of faith than me so I was hoping this would be his response.
It I've learned anything it's the fact that we may make plans but God is the one who decides.
We're 8 1/2 weeks along and having our first appt and ultrasound on Monday. I complained the first couple of weeks that I wasn't sick or tired. I wanted to feel those early pregnancy symptoms so my mind could be put at ease that it was progressing. Well I got what I asked for. I've been beyond unbearably tired and feeling sick almost all day with the worst part at night. Our house is such a mess. You may think I'm exaggerating but last night Shannon took down five water cups from my nightstand by our bed. Every time I feel especially sick or tired I remind myself that it's a good sign. So anyway I'll keep you all posted and do my best to post more often. I know that a lot of family checks this - sorry to go so long.



I found out we were pregnant the Tuesday before Valentine's Day but I knew I couldn't hold off five days to tell him. We had no night available except that Wednesday so I called a friend to come watch the kids so we could just go out for a quick dinner. I said it was an early Valentine's Day dinner. I called ahead (Sonny's in San Clemente) and asked them to make a surprise heart shaped pizza and asked if they would bring out a bottle of sparkling cider and a gift bag for Shan. Thankfully he agreed to do pizza (to make me happy even though he didn't want it) and he was so confused when the pizza, cider and bag came out. He was happily surprised. It was a really fun night!!!

Quick Update….forgive me for not writing sooner.

Since before Christmas I’ve been so busy that I haven’t been able to blog. I think about the blog throughout the day, I write posts and stories and put together all kinds of funny and interesting things to write – in my head. :) I never find the time to sit and actually type it.

I’ll give you the top five things that have happened in the past few months then every couple of days or so I’ll write a post about them and more in order to give all the sordid details.

Here you go and stay tuned for more:

5. We went to Colorado for Christmas for 10 days and had a wonderful time with family. We saw my step-dad’s family, my mom’s family and Shannon’s family.

4. New Years/New Resolutions

3. Noah started T-Ball!! He’s our big boy!

2. Jordan’s eye doctor found some vision problems in her left eye so we’re patching and she has some really cute new glasses.

1. For Valentine’s Day I gave Shannon a pretty exciting announcement…you’ll have to guess what that announcement was. I’ll blog about this one first…:)

See you all in Blogland soon!

Sewing, sewing, sewing...

I have two upcoming sewing parties...one this Tuesday, Nov 24th and then another one the following Tuesday the 1st of December. We're set for people to sew this week but still have room to fill this house with machines by the 12/1 date. I worked my way through a couple patterns tonight and I don't feel like the expert by any means. In fact I'm thankful one is finished finally and it's not midnight. One pattern I tried didn't work out for me so I went back to an online pattern that worked when I put the two together. Here's what I ended up with. Oh and the back of the gown wasn't supposed to be the pink fabric but the cutting out of the pieces got messed up so I had to work with what I had.

My first ruffled sleeve...it's harder than it looks. It's a pain, actually. Not sure how that's gonna work out on Tuesday. Hmmm.....

Front of the gown...notice I skipped the ruffling on the bottom. Too much work.


Bummer that this fliped sideways but I wanted to give another example of a refurbished project.
This took 10 min or so.
Jordan had an adorable Minnie Mouse t-shirt that was too short - her little belly hung out the bottom. I couldn't bear to throw it away so I opted to add a little ruffle on the bottom. She also has some black pants that are too short...I might just add some polka dotted length to those too.


Isn't this shirt just "soooooo cute?!"

Okay so be praying for out time Tuesday night that it would be fun and productive. Pray that the pattern/sewing would go easily and quickly and that the women who are great at sewing will be able to make it since it would be the blind leading the blind otherwise.
Also please be praying that this week as I talk to Children's Hosptial Orange County that they'd allow us to deliver the gowns, that they would prove useful, and that I (and whoever else) will be able to begin to spend time with some of the moms who have children there.

Hearing Issues Revisted

I'm writing tonight about some mildly disconcerting news we got today about Jordan's hearing.

I want to preface it though...

Being a teacher of the Deaf and Hard of Hearing I have a pretty good understanding of the implications of a hearing loss. For this reason I take hearing loss very seriously and want to be sure to clearly say that I am not in any way making light of hearing loss or amplification by putting this picture in my post. I was trying to find ear pictures and pictures on hearing etc and I came across this one which I chuckled at. In life sometimes it's helpful to find humor in small things (or big things in the case of this photo - ha ha).

On to my story.

With Jordan's cleft palate that extends into her eye and elsewhere (no doctor really knows the damage that was done in her sinus area and inner/middle ears due to the amniotic banding) Jordan needed ear tubes to drain excess fluid that would build up in her middle ear. The tubes allowed the pressure to be released and the fluid to drain out. When fluid is present hearing is significantly affected therefore tubes are very important. She has had three sets of tubes put in and they typically work their way out of her ear drum within 12 months or so (common). I've begun recently to be concerned about the damage a lifetime of tubes will do to her ear drums and I've wondered about scar tissue that can also affect the eardrum's movement (hearing loss).

To make a very long story kinda short - I finally got her to a Speech and Hearing Center that specializes in children with hearing loss. Most of my students go there and I know that they are the best in the area. Once again it was so surreal to be going through the exact things my student's families go through. We did the standard ear check (they found that the tube is out in one ear) but that there is no fluid (meaning no tube needed). The preliminary test in her right ear showed that the tube was intact but that there might be some issue. Next we did the official hearing test where she responds when she hears a sound. I assumed everything was fine and that I was just being paranoid. Then I noticed the doctor reviewing all the positives regarding her left ear and as she was going on and on about how great that ear is doing I noticed she was holding her folder up so I couldn't see the audiogram (results of the test). My mouth went dry and suddenly it like the day we were in the OB's office and she was telling us about all the things "wrong" with our baby that they found on the ultrasound. All I could hear was the voice from the Peanuts cartoon. I knew she was saying important things but I couldn't really "hear" what she was saying. All I heard was..."She does have a mild hearing loss...I'm not recommending hearing aids 'at this point...'" I struggled to think of a single intellectual question to ask her. I just repeated what she was saying a few times to be sure I was hearing her correctly (no pun intended).
The icing on the cake is that as I was leaving I ran into a family I work with. This is a family that it has seemed everything has gone wrong with since I started. Ever have that happen? I can say with all honesty that it has been just one of those things that really has nothing to do with me. As I'm leaving with my kids, trying to process through what I had just heard I'm also trying to navigate my way through chit chat with this Mom and her daughter. It was challenging to say the least.
As I think back through what she said it doesn't feel as major, although it is a little tough still not knowing if it will progress or what we'll do now as far as ear tubes, scar tissue, etc.
One friend tonight was feeling for Jordan and said something about Jordan not getting a break - it's one thing after another. It totally feels like that and she is right that it appears that way at first glance but when really digging in she has had so many near misses or close calls or "breaks."
A few:
- At the 20 wk ultrasound the doctors said her issues could be grave and that we should consider killing her. (ahem, I meant to say "terminating the pregnancy")
- At birth they said she would have significant feeding issues and may need a G-Tube to eat.
She was the best cleft affected eater they had ever seen.
- Her genetic testing came back and they discovered it was Amniotic Band Syndrome this probably won't happen to us again or to her children).
- Her extra fluid in her brain resolved itself with no medical intervention (hydrocephalus).
- We've been able to have every surgeon and doctor that we've requested despite our HMO's rules (there have been a lot!)
- A breathing issue that went awry during a surgery was caught and resulted in a week on a breathing tube but thankfully not a tracheostomy.
- Her hand surgeon said once to a resident that Jordan was a worst case and I corrected him letting him know that worst case would've been being born with no hands.
- Her orthopaedic surgeon said that many doctors may have amputated her lower leg but that it was good that we had a doctor who opted to try to correct it instead. Praise the LORD!
- She kept failing hearing tests when she was younger (I'm talking profoundly failing them) but the middle ear issues were resolved giving her hearing.
Without any breaks Jordan could have been profoundly deaf, with amputated hands and one foot, needing a shunt to drain the fluid from her brain and a feeding tube to get her nourishment. It's encouraging to look at that list and then compare it to where she is today. By God's mercy, the last three years have been hard but she is doing great and my guess is that a mild low-frequency hearing loss will not slow her down.

Halloween 09

My mom got Noah a Jeff Gordon Nascar racing suit and Jordan was going to be the usual - a princess. However at the last minute I decided Jordan would do something different for a change. One of the many years past when we missed Halloween due to surgeries for Jordan I grabbed a few costumes from a marked down $1 bin. Among those was a cute bumblebee suit. It was absolutely perfect and totally adorable on her! My favorite so far.
Our church put on a giant "Fall Fest" as an alternative to Trick-or Treating and it was a total blast. Nearly 8,000 people went (from the community - our church isn't that big) so thankfully they had a great toddler area which was perfect for our kids.

Noah and his friends Dylan and Sheadon. These boys are so sweet with each other and have such similar personalities. It's nice to see their bond and affection for each other.
This is Miss Hawley (Katie) who is a dear friend's sister. Isn't she beautiful?!!

This is Braydon - seriously it's so funny with these two. They both are smitten with each other and ask about each other randomly through the week. Look at his sweet face looking at Jordan!

Not quite a modified Nascar race car but I guess an elephant bumper car will have to do.

They are SOOO cute!!!!

"Refer"

One magic little word...."Refer" used to replace a much harsher sounding word..."Failed."
Being a teacher of the deaf I was certain my children would be born deaf. The newborn hearing screening wasn't mandatory at the time but I made sure Noah was screened. Then with Jordan and all of her issues they told me they weren't going to check her hearing. They said it wasn't routine. I very politely informed them that I wasn't leaving until they checked it.
Well she got a "Refer" which is a nice politically correct way of saying that she failed her hearing test. For four months she tested with "no reponse" to sound. The audiologists assured us that it was probably just fluid but I wasn't able to look at or even go near the shelf in our house with my textbooks on hearing loss until I knew for a fact that she could hear. The potential was devastating to me. Thankfuly she got ear tubes and was cleared with great hearing.
I've wondered a few times about all the ear tube surgeries she has and what the lasting effects will be on her tympanic membranes (ha - big word for ear drum...just thought I'd impress you with my vocabulary). A while back she "referred" during a doctor's visit hearing screening but an audiologist who doesn't usually test kids said she was fine (even though I heard her miss high frequency sounds). Then I took her again to the ENT for something else and she "referred" again. Later I tested her myself on an audiometer and it showed a high frequency loss. I chalked it up to attention. Today we were back at the ENT for a tube check and she "referred" again.
The doctor thinks it might be hearing loss due to scar tissue. Bummer. We're praying that they don't send us back to that same adult only audiologist and that we can get to the bottom of this. Thankfully I think it is only in one ear which means even if it's a significan high frequency loss she would not necessarily need hearing aids.
We will keep you posted on the insurance approval and the test results. Pray that we can get in to Providence and that we can get some advice on these surgeries and the lasting affects of ear tubes. Her ENT said she'll have to have them forever.