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Cast #5

When we arrived at Shriner’s last week, I thought we would exchange cast #5 for #6, and hopefully get definitive word on whether or not Jesse would need surgery on his Achilles tendon, based on the X-ray.  When Dr. Aiona entered the exam room, he had a perplexed look on his face and tentatively said, “Well, the X-ray looks ok …“  Uh-oh.  That’s not the fantastic news we were hoping for.

It turns out that Jesse’s foot is just not “fitting the mold,”  (surprise, surprise … he’s one of ours!) and has his doctor a little puzzled.  The Achilles tendon is not tight, and Jesse’s foot has plenty of dorsiflexion, so there will be no need to cut the tendon (Hurray!!).

But, there are a couple of bones in his foot that are not lining up correctly, and the only thing we can do about it is “wait and see.”  Hopefully, as he grows and his muscles develop, his muscles and tendons will pull those bones into place.  I’m not sure what happens if they don’t …

Also, the tendons on the top of his foot seem tighter than they should be – near the area where the bones aren’t lining up.  The doctor said it’s almost as if his foot is bending in the middle of the foot instead of at the ankle.

Here is what his foot looked like after the cast was removed:  In the profile picture you can see the “bump” on the top of his foot from the misaligned bones.  He is also very flat-footed, with no arch whatsoever.

But, Dr. Aiona felt that another cast wouldn’t do any good, so we moved on to bracing.  He is supposed to wear this contraption 24/7, and then we will head back to Shriner’s in a month for a check-up.  Yes, a whole month without a trip to Portland!  That will be nice.

"Awww, Mom! All the other newborns are wearing Robeez!"

The first few days, he was incredibly fussy with these shoes – even more so than with the casts, but he has become more used to them now.  We’ve all had to learn how to live with these braces, which has involved several modifications, like a pillow for his feet to rest on at night and cutting the feet off of all of his little outfits.  Luckily, I can still wear him in the baby bjorn, which is his favorite place to be:

The shoes are starting to give him a pressure sore on his left foot, so Shriner’s is sending me some special padding to put inside the shoe.  Hopefully that will help, but meanwhile we get to leave his shoes off for longer periods of time, as long as we are massaging and moving his foot.  The longer he’s been out of the cast, the better his foot looks to me – and the tendons that were tight on the top of his foot seem to be loosening up.  He still has the “bump,” though, so we would appreciate continued prayers for healing and proper bone alignment.

Meanwhile, he’ll be wearing the brace until he can stand up on his own … then he’ll only wear it at night for the next 2-4 years.  Jesse, no one could make them look cuter than you do, though!

I hate needles.  I’m pretty tough myself, but I hate it when my children have to get “stuck.”  Every time they need immunizations, I get a knot in my stomach starting the night before, and I want to just cry along with them in the doctor’s office.  I can’t stand seeing my children in pain, even though I know it is best for them, and am so very thankful for the immunizations!

Because Matthew has Down syndrome, he also has to have yearly lab tests.  People with Down syndrome have a higher chance of having thyroid dysfunction, leukemia, and other diseases, so he gets his blood taken once a year to make sure he’s healthy.  I know he needs the tests, but I still hate the needles!  This year, I asked his doctor for some EMLA cream (a topical anesthetic) to see if it would help.

The cream numbs the skin, but is a prescription and must be applied 45-60 minutes ahead of time – so it takes some planning ahead.  When the technician first poked Matthew with the needle to draw his blood, he looked and acted like he didn’t feel it at all – didn’t even flinch!  But, then she had to “dig” a little bit to find his vein, and he started to cry.  It was short-lived, though, and the whole experience was much less traumatic (for both of us!) than I had anticipated.  I think the EMLA really helped.

I thought I would share the EMLA idea with you other mommas, but I’m curious about your own experiences.  What have you tried to make these experiences better or less painful?  Has anything worked for you?  What about immunizations?  Micah’s 4-year old appointment is coming up (4 shots!!) and I’m already dreading it.  Our doctor said the EMLA works well for blood draws, but doesn’t help very much for shots because the pain from the shots is quite a bit deeper.

Our Lion and Tiger and Bear!!

This Halloween, all the kids were cute, but I thought my little lion was especially adorable!

Jesse’s appointment at Shriner’s yesterday went very well.  We had no problems taking the airplane, and it was great to give me a break from all the driving.

Jesse’s left foot looks fantastic!  I’m amazed by the visible difference each week.  Dr. Aiona is almost positive that he will not need the Achilles tendon surgery, but will do X-rays at our next appointment just to be sure that all the bones are lining up correctly.  From the way his foot looks, though, he said he would be shocked if things weren’t just perfect!

We are praising God, doing our “happy dance,” and are so very thankful for this great news!  Thank you for all of your prayers, too!

He said that we are done correcting the position of Jesse’s foot – it is turned out nicely and can flex to 90-degrees or more now!  Hooray!  Now, we just need to hold it in that position for awhile so it doesn’t revert back.  That means that this cast (#5) gets to stay on for 2 weeks.  Then, we’ll do the X-rays, and if everything looks o.k., he’ll get another 2-week cast – his last!  After that, he’ll be fitted for braces.

So, it looks like no surgery, only one more cast, and less frequent trips to Portland…

And that is definitely something to smile about!

This is a long post … if you don’t have time to read it all, please just skip down to “Week 4″ and say a prayer that Jesse’s foot may be healed without surgery.

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Week 1:

We were a little unprepared for our first visit to Shriner’s hospital in Portland.  The process to correct his foot is more involved than we were anticipating.  (I know, with our professions we should know this stuff – or, at least have spent some time researching it!  But, we were in denial for his first month – just wanting to enjoy and love our baby without worrying about medical interventions.)

Jesse’s doctor, Dr. Aiona, is the chief of staff at Shriner’s – so we are truly blessed to have the “best of the best” taking care of him.  We learned that the usual process to correct his foot involves weekly casting for about 6 weeks, then a surgery.  The casting portion slowly stretches the tendons in the foot to straighten it from left-to-right, and the surgery is to allow his foot to flex (toes toward nose).  After the surgery cast comes off, Jesse will need to wear a brace for 23 hours/day for a couple years, then a brace only at night for a couple years after that.

It came as a bit of a shock to me that he would need surgery – I wasn’t expecting that, and definitely not looking forward to it!  The surgery involves cutting the Achilles tendon, then placing him in a cast for 3 additional weeks to allow the tendon to heal.  Dr. Aiona uses the “Ponseti method” for correcting club feet, which as far as I can tell is not only the most minimally invasive method, but is also shown to have the best results. (I did do my research later!)

We were surprised by the size of the cast, too – I guess we didn’t expect it to go all the way up his thigh!  They cast it this way to keep it from slipping and cutting off his circulation.  He was a trooper, though, and gave us some smiles even though his cast was rubbing his skin raw where the edge of it met his thigh.

First cast

Week 2:

Just Jesse and I returned to Shriner’s for a cast change.  Engraved in stone on the waiting room wall, it reads: “SHRINER’S HOSPITAL FOR CRIPPLED CHILDREN.”  Crippled….  That’s not a word we hear very much these days.  It really hit me then – we’re here because Jesse is crippled. Crippled!  At least, that’s what he would be without treatment. Thank you, Lord, that we have access to medical care, and for these doctors that can heal Jesse. Another time or another place – he would be crippled for life.  Suddenly, the long drive to Portland doesn’t seem so bad – after all, wouldn’t a parent do anything to heal their crippled child?

I was surprised by how much straighter his foot looked already – there was definitely a visible difference after only 1 week of casting.  Dr. Aiona was evidently impressed, too, because he asked me twice if this was really only his 2nd cast.  He said his foot was looking great.  That’s what we wanted to hear!

Driving home, I was exhausted.  Driving 4 1/2 hours each way with an infant was taking it’s toll.  I’m thankful we have family and friends in the Portland area that let us stay overnight, so I can break up the trip a little bit.  But, it’s still a lot of time on the road, and a lot of time away from Micah and Matthew.  But, I’m so thankful that Aaron was able to re-arrange his schedule so that he has every Wednesday off.  He gets to stay with the boys and have some fun Daddy-time with them.

Week 3:

It felt like I just got home, when it was time to pack up and leave for Portland again!  I was so behind with everything – laundry, house cleaning, meal preparation … everything had just been exhausting, and it seemed like I didn’t have the energy for any of these “extras.”  Jesse and I got loaded in the car, kissed the other boys good-bye, and were off.  Even with music, and books-on-CD, and even though I do enjoy a little bit of the “quiet time” on the road, the drive to Portland is just long. The Columbia gorge is beautiful the first couple times you drive it, but after awhile, it just seems desolate.  There is nothing for the 2 1/2 hours between The Dalles and Umatilla!

Lord, you said if we have any faith at all in You, You can move mountains.  I don’t need you to move a mountain, but I do need you to move a major city!  Driving this much every week is so hard – I need you to somehow make Portland closer.  I don’t care how you do it, but I know you will.  Thank you!

Dr. Aiona was impressed with the progress of Jesse’s foot.  He again had to confirm that this was only his 3rd cast, and told his resident, “This is the best looking foot we have!”  He said that Jesse will probably need 2-3 more casts, then he’ll be ready for surgery.  We would know more next week, and perhaps be able to schedule the surgery.

Oh, how I dread putting my babies in surgery!  Dr. Aiona uses general anesthesia for this, which means Jesse will be completely out, and feel no pain during the procedure.  (He will also hold perfectly still so Dr. Aiona can do a good job!).  General anesthesia has its medical risks, however, and (the hardest part) Jesse will not be able to eat for several hours prior to the procedure.  Jesse is a hungry, growing boy, and this part will be hard on all of us!  Dr. Aiona said that most babies do well with just Tylenol after the surgery … but if my achilles was severed, I would want more than that!  Oh boy – dealing with post-surgical pain is so hard.  At least he won’t remember any of this, right?  And it will all be worth it when he takes his first steps.

Micah was really hoping for a “purple cast” this time, but instead we let him decorate it with dinosaur stickers.  Jesse’s smile was all he needed to feel that his efforts were appreciated.  After all, who wouldn’t want a dinosaur cast?

Later in the week, a friend came over to help with the boys so that I could get some things done (thank you, thank you!!) She mentioned that she had just taken her daughter to college in Portland, and flew home on the little commuter flight into Pendleton.  She wanted to make sure we knew about those flights, because they were quick, easy, and inexpensive.  When we first started going to Portland, I looked into flying, but all flights went through Seattle, and were far too expensive.  I hadn’t thought to look at flights out of Pendleton, though (a little town about 45 minutes from us.)  Acutally, I didn’t even know that Pendleton had an airport!

Sea Port Airlines operates little 8-passenger planes, and charges $75 each way.  They have round-trip flights 3x/day, and even let you keep your shoes on.  When I called, I got a “first-time flier” discount on one of the flights – I’m only paying $29 to come home!  Looking into options for ground transportation, I found that Shriner’s has volunteers that provide transportation to and from the airport at no charge.

That will do, God.  That will do.  Thank You!!!

Week 4:

We didn’t quite have the details of flying in time for this week, so we drove again.  A friend from college (who I hadn’t seen since Matthew’s heart surgery!) met us at Shriner’s to keep me company and help out. She even helped me give Jesse a mini-bath in the sink between casts … believe me, he needed it!

Dr. Aiona had great news for us – Jesse’s foot looks fantastic!  I was amazed by how straight it looks, and Dr. Aiona had to double-check to make sure he was casting the correct foot!  He told us that in a very small percent of club foot cases (2-5%), surgery is not necessary.  He said that Jesse might fall into this category, but we’d have to wait another week or two to see.  If Jesse’s foot can flex to 90-degrees or better, he won’t need the tendon surgery!

Look how straight the cast looks – he was even able to get his foot turned out slightly!  This time, decorated by big brother with some animal stickers, some coloring, and a “J” for Jesse!

4th cast

Please pray that Jesse’s foot will be healed by casting alone and that surgery will not be necessary.  It would be so wonderful to not have to go through all of that, even if it means a few extra weeks of casting.  We want him to have the best outcome possible, and if that means he needs surgery, so be it.  But, if he could be spared all that pain, it would be fantastic.  Prayer has helped us beat the odds before, so we would very much appreciate prayers for healing and stretching of that achilles tendon!

What did I do?

Well, I beat the odds.  I lived.  I healed my heart, and lived when the doctors said I wouldn’t.

Then, I sailed through my open-heart surgery, spending only 5 days in the hospital.

I started eating on my own, got rid of the feeding tube, and breathed without the help of oxygen.

And, I was just getting started.

I rolled over.  I sat up.  I learned to crawl.

I took my first steps.  Then, I took thousands more steps, with each one getting faster and more steady.  Now I can go anywhere . . . grass?  uneven ground?  dirt?  rocks?  No problem!!

I can even climb up and down stairs now.  By myself.

That’s right!  I did it!

I have learned to use over a dozen ASL signs to communicate, and I can feed myself with a fork.

And, along the way I’ve managed to charm everyone I meet.  Yup – I guess I’m just that cute.

I did it, alright – I did it with an extra chromosome.  And, I am just.  getting.  started.

I think you’ll agree that I deserve a round of applause.

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Oh, and did I mention I have a desk job?  Answering phones, taking messages . . .

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We got the “i did it” shirt from Jennifer at Three’s a Charm.  She is using the proceeds from the shirts to give copies of Gifts 2 to parents of kids with an extra chromosome.  You can read more about it and the “i did it” campaign here.  You can even become a fan of “i did it” on facebook, and see other cuties sporting the shirts.

The last 4 weeks have been wonderful.  Busy, yes.  Exhausting, yes.  But, as a good friend of mine put it, we’ve been enjoying the Baby Bliss of having a newborn.  We’ve been soaking up every minute of Jesse’s sweetness – his skin … his soft, soft hair … his sweet baby smell … the tiny little sounds that only a newborn can make.

It has been nice to just enjoy him, and not have to worry about strict feeding schedules, oxygen requirements, heart failure, hospice, or any of the other things that made Matthew’s first months so stressful.  And we have been enjoying him immensely – treasuring the small moments, and thanking God for our healthy, beautiful boy, who just needs a little help to straighten his foot.

Yes, Jesse was born with a club foot.  We knew this was a possibility from my 20-week ultrasound, but were hoping it would be flexible enough to require minimal intervention.  Matthew was diagnosed with 2 club feet in utero, but when he was born, his feet were very flexible and self-corrected by the time he was 6 months old.  Jesse’s foot, however, is not flexible and will require casting.  As you can see, Jesse’s foot is a classic case:

We’ll go to the Shriner’s hospital in Portland next week for his first cast.  Then, he will need to be re-casted weekly for several weeks, then wear a brace at night for about 2 years.  It is a more involved process than we were anticipating (we were really hoping to be done with children’s hospitals for awhile, but instead we get to learn our way around a 3rd one!), but we’re thankful that club feet are treatable – it is not a life-threatening or life-long condition, and by the time he is ready to run, his foot will be ready, too.  However, the casting stage is going to be logistically quite difficult for us, since Portland is over 4 hours away.  There isn’t anyone closer who is comfortable casting his foot, so we need to figure out how to make weekly trips across the state.  (I always thought it would be Matthew who would require us to live close to a children’s hospital!)

We’ll make this first trip together as a family, (and hopefully take the boys to the zoo if weather permits), but later trips might have to be just Jesse and me, leaving the older boys with Daddy or grandparents.  We’ll make it work one way or another.

Meanwhile, we’ll keep taking in every special moment.  Whatever it takes – he’s worth it … and he’s already rewarding us with sweet, sleepy smiles:

Once again, we appreciate your prayers.

About 1 in 1,000 babies is born with a club foot – many times it affects both feet, as it did with Matthew.  We were also once told that our chances of having a baby with Down syndrome was 1 in 1000-1500.  I’m not sure how I feel about hitting those odds twice in a row … my dad says it makes us a 1-in-a-million family!

My Matthew,

Happy Birthday – You are two years old today!

While most parents would say, “Wow, how time flies!  It seems like only yesterday …”   Instead, I find myself thinking, “Really?  Has it only been two years since you were born?”  You have been through so much, and have come so far, it’s hard to believe that only 2 years ago, you were my tiny 4-lb baby, too weak to eat or cry, expected to only live a very short time.

Now, look at you!

Definitely not too weak to eat, now!

You are so full of life and energy, you are hard to keep up with!  You are always on-the-go, exploring, climbing, and busy discovering the world.  You are learning to communicate, and pick up on new signs quickly.  In the past couple weeks, you have added “dance,” “please,” “outside,” “book,” and “dog,” to your sign language vocabulary.

You are inventive, and are constantly surprising us (and making us laugh!) with what you come up with.  A couple weeks ago, you were trying to “call” Grandpa for most of the morning.  You used a piece of wooden train-track as a phone, and said “aaaa-oo? pa-pa?”  When he didn’t answer, you tried a banana-phone at the breakfast table.  He didn’t answer that, either, so after breakfast, you used your handy-dandy foot-phone!

"Aaaa-ooo? Pa-pa?"

You are asserting yourself, demanding more independence, and testing the limits … all of which challenge us, but are so typical of a 2-year-old that we are happy to see it.  You have a very sweet, gentle side, too, and give the very best snuggle-hugs!  If either of your brothers are crying or fussing, you are very concerned, and are quick to offer a comforting hug or a pat-on-the-back.

You will not tolerate being left out of anything – whatever Micah is doing, you want it on it!  You two love to wrestle and chase each other, dance together, go for “rides” in the laundry basket or spin in the office chair.  You’ve learned that Micah will push you faster than Mommy will! You have started to play with Micah’s animals, too, but you say “ooo-ooo” for every animal.  Micah is patiently teaching you that they are not ALL monkeys!

You have started to be “helpful,” and will take a wash cloth to wipe your little brother’s face, or try to clean the table.  You especially love “helping” with outdoor projects, and have lent a hand with some gardening and landscaping this summer.

Our soil-quality expert!

Yes, you did this all by yourself.

Yes, my little Matthew, I still marvel at the gift you are.  I cry when I think about “what could have been,” because I simply can’t imagine my life without you now.

You’ll always be my miracle baby, but you are shaping up to be a pretty cool big-brother, too!

We love you more than words can say.

Happy, happy birthday, my beautiful boy.

Here he is! Jesse Gabriel Vawter, along with very proud (and gentle!) big brothers Micah and Matthew.

Jesse joined us after a short (but intense!) labor – we got to the hospital around 4:30 am on Sunday, and he was born at 6:51 am.  Thankfully, I did not have to have another C-section because I have a bicornuate uterus (basically, 2 completely separate “halves”).  My C-section was on the left half of my uterus, and Jesse was on the right side, so there was not any pressure on my uterine incision during labor.  Funny – a “deformity,” one that was supposed to cause me all kinds of problems, actually proved to be beneficial in the end.  Hmmm – the Lord has mysterious ways.

We are all home now, and doing very well.  Jesse is doing a great job nursing, and his big brothers and grandparents are enjoying him very much.  I’m feeling good and recovering well, too!

Thanks for all the prayers, everyone!