4 wks post surgery

We got the big red cast taken off and a big green one put on in celebration of St. Patricks day! Nolan's bone is healing well, but it is curving just a bit. Dr. Shoemaker molded his leg in the cast a bit today to correct it. We go back in 4 wks and HOPEFULLY this is our last one. He is in a long leg again but he made the bottom flat so he can try to stand on it.

He was such a trooper! Just some fussing but no tears the whole time. He had to get the red cast sawed off, X-rays with no cast on to support his leg, pins pulled out, antiseptic rubbed over his pin sites (one was a little infected), glue removed off his suture sites, leg molded in a straight position, and a new cast put on. He really does inspire me every morning to put on my big girl panties and deal. I love this kid so much.

As for the comments that bombard me everywhere I go...it's not getting any better. I'm so sick of "poor baby" and "it's ok, mom's drop their babies all the time." I've started telling people it's a skydiving injury or he was running with the bulls. If people keep pressing I honestly try to make them feel as guilty as possible for not minding their own business. I know it's horrible. I usually tell them all the gross details of the surgery to correct his BIRTH DEFECT! Of course then I get the...well did you do something wrong? I honestly can't win. Good news is that we only have 4 more weeks left of the cast and hopefully we are done with inappropriate comments coming at me from every angle.

Check up

Today we had our 1 wk post op check-up. They took the spacers out of his cast, closed the gap left for swelling, and put some red over the top. Figured feb is the month of love so red is appropriate. I think I'll get green in March.

The Post-surgery post

My kid is a rockstar!

The surgery went well. He was under for 2 hours total. Kaiser was awesome and let me be in the operating room as he fell asleep. It was really hard seeing him so scared but at least he wasn't alone and scared. I did cry for a good half hour in the waiting room though.

Both his tibia and fibula are broke. Dr. Shoemaker opted for a dome osteotomy to correct the tibia with 2 pins going through the bone to hold it in place as it heals. The fibula is just broke and lined up together. The tibia will act as a splint to line up with. We spent one night in the hospital to monitor his swelling and we were home by 2pm the next day.

He is on 2 dosages of Tylenol with codeine at night and 1 does of children's Motrin during the day. He is happy in a carrier (we use our Tula buckle carrier and ocah custom mei tai.) and is fine sitting playing with his toys. He does get frustrated that he can't crawl sometimes. He is still napping the same and sleeping well at night in his crib (we just transitioned him to the crib a month before the surgery).

The big revelation I have taken away from all of this is the beauty of positivity. Nolan is this little beam of sunshine even with pins and a massive cast. It makes me have a quick attitude adjustment whenever I see his huge smile.

Update

So we had our 1 yr check-up and it didn't go quite to plan. First having to track down my orthopedist to get an appointment was incredibly frustrating. Thankfully, now have every direct line number for Kaiser orthopedics. As for the appointment...there was no correction to Nolan's leg in 6 months. It's still showing an approximate 130 degree bow. Then there was the bomb..."I think it's time to consider surgery." This option has been lingering in my mind since day one but the optimist in my believed his leg would straighten out. Dr. Shoemaker said Nolan's case is the worst he has ever seen but surgery will be a definite full correction. After my initial panic attack, I knew he was right.

The night I broke the news to Cameron and he was shocked as well. The other option to consider was a brace and re-evaluate in a year. However the constant pressure on the leg from walking would hardly help the situation. After discussing our options, we both agreed surgery was necessary.


A few days later I got a call from Shoemakers office claiming someone had canceled and they could get us in within 2 weeks. The decision I had seemed so confident of even hours previously suddenly seemed like the end of the world. I kept it together on the phone. But I couldn't help but to break down and cry once I hung up.

My sweet, delicate, loving little man was going to endure a surgery that makes most grown adults run and hide. They will be breaking to bone, cutting a wedge on the outside of the curve, and the re-inserting the wedge on the inside. He will then have pins and a cast for 4 weeks. Following that will be a walking cast for 6 more. He isn't allowed to put any pressure on the leg for the first 4 weeks.

I'm so nervous and scared for my little dude. The last thing you ever want for your child is to deliberately put them through pain. I know that this decision is best though. I get so sad when I see him try to walk or stand. He gets it for a few seconds and then falls down crying. He is so angry that he can't walk or keep up with me. He knows something isn't right. I know this will all be worth it when I finally get to see him take his first steps. It's something most parents take for granted. I know that when I finally see it, I will be recording it and showing everyone around me. Watch out stranger in line at Target...you will be seeing a video of my baby walking. There was a point in my pregnancy where I didn't even know if he would be able to walk.

Oh and let's not forget the LLD. As of now Dr. Shoemaker doesn't see a significant difference. However, when you break the bone, it stimulates growth. His left leg will be getting a little longer after the whole surgery. Hopefully if there is any sufferance, this will correct everything and no more surgeries necessary! At least I could end the post on a good note. Lots more info and photos to come tomorrow post-op.

Recess is over

We have been having a great time on our 2 month break.  It occurred to me that I should update the blog but no...we were on a break from treatment so I took a break from blogging too.  Within the past 2 months my hubby and I went on a trip to San Francisco.  We went camping in the Santa Cruz mountains for 2 nights then went and visited the city for another 2 days.

Here is Cameron and Nolan hiking in Big Basin.

Here is how excited Nolan was to visit the Academy of Sciences in Golden Gate Park.  This was inside the rain forest exhibit and there were butterflies everywhere.

I was home for 3 days and went back on a plane to Boston!  Here is the little man and I on board the USS Constitution.

We have also had good family time.  Cameron recently got a new job so things are a little less stressful around here.  He is working for an awesome company (who has awesome health care) and we will continue to receive Kaiser health care with his new employer.  I am so thankful we get to keep all of our doctors.  I finally was feeling ok with everything.  And I am SO SO SO happy we only had to pay 2 months of cobra insurance.  We made it work but I was not a fan of writing a $800 check for something that used to cost $80.

So in the middle of all these good times I got the dreaded call from the orthopedist.  It's impossible to ever get an appointment so I always get a call the day before and am told a time to be there.  I got the call yesterday to be there today at 1:45pm.  I know it is necessary but I am just so afraid of bad news.  I've gotten really good about being relaxed and not stressing.  So maybe only having 24hr notice is good...it only gives me 24 hrs to stress and I can relax the rest of the time.

Here are the xrays from the appointment today vs. May 16th.  Today's are on the top and May's are on the bottom

Here is the close ups of a frontal view and a side view.

What do all these pictures mean? Well the curve of his leg was 120 degrees in May.  Today it is 140 degrees!  That means there was approximately 20 degrees of correction with no casting!  Now only 40 more degrees to go before getting to 180 which is a straight line.

Also Dr. Shoemaker pointed out the tiny little white dot that is at the end of his tibia...can you see it in the left xray?  That dot is where new bone growth will develop and it uses that bone? as a guide.  It is supposed to be in the middle...Nolan's is on the side.  Usually this would be bad but in our case it's good!  It shows that his body knows there is a problem and is fixing it.  Hooray!

We will go back in 4 months for a recheck.  At the time he will probably be fitted with an AFO or otherwise known as an ankle foot orthodic to help is foot stay in place when he learns to walk.  The shoe will also provide an extra lift to make up for his LLD.  Right now it is estimated to be 2-3cm and will be corrected with a leg shortening surgery of his right leg when he is 4 or 5 years old.

So far so good!  Thank you to everyone for your positivity.  We need lots of good vibes to make it through the next few years.

A well needed break

So we went to the ortho yesterday morning and he was happy with Nolan's progress. We took X-rays and it showed that there is new bone growth on the inside of the bow and nothing on the outside. What does that mean? It means his body knows his leg is supposed to be straight and is working on fixing it. We now are on a 2 month break from casting! This doesn't mean we are done...it's just a break...like Ross and Rachael from Friends. We go back in 2 months to do more X-rays and see how is body is handling everything. As of right now there are 3 ways things could go:

1. His body does fine and we don't need anymore treatment till his surgery to correct the leg length in a few years
2. His body is fixing the problem but just not fast enough to support him walking. In that case he will need an AFO which is a shoe like brace to support him when he is walking.
3. There was no correction made during the 2 month break and we are doing a second round of casting.

I am of course voting for #1 but I will not be upset if we have to start another round. Once we got through that first tough time; casting was pretty easy. My biggest complaint was that he wouldn't sleep well. He wasn't unable to reposition and fall back asleep....so whenever he did wake up he was wailing and it took awhile to calm him back down. Plus every time he woke up he would need to nurse to calm back down. I am just happy that I have been able to successfully breastfeed my little one so that I can give him the love and comforting he has needed during his treatment.

Since we have been cast free for almost a week he is only waking up about 2 or 3 times at night (which isn't a big deal since we co-sleep). He is sleeping from 9pm till 8am. And he is also taking good morning and afternoon naps.

I hit super mom status yesterday when I was able to scrub my bathroom tile floor, seal the tile, scrub the toilet, scrub the countertop in the kitchen, scrub down the kitchen cabinets, sweep the whole house, AND bake banana muffins! I'm pretty sure it was the most productive day I've had since he was born! Today was mopping but it looks like we are having a bit of a nap boycott. He has one more chance until I wrap him to my back and he helps get the chores done.

Attached is new X-ray followed by his first one. It's hard to see the change unless you look at the distal end (ankle joint) of his tibia and fibula. Also remember that this condition takes 5 to 7 years to fully correct. It is easy to get discouraged when you only see month to month and not year to year.

End of cast 3

Here is a picture of Nolan's progress. We finished cast number 3 on Friday and we are enjoying some time off before number 4. We have a doctors appointment on Weds morning. Hopefully Dr. Shoemaker likes what he sees!

Also attached a cute picture from mothers day! Since I now have one of every type of wrap I'll be posting some cast babywearing pictures really soon!

Gooooooood news

Well I think it's time for a happy post to follow up my angry rant. Are you ready for it....Cameron got the job!!!!! We are so so so so so happy! So here are all the benefits of the new job: a raise, no worries about me being a SAHM, we get to keep kaiser (blessing and a curse), we get to stay in San Diego, and lots of advancement opportunities. I married one of the most amazing guys out there. I am so fortunate to have found someone who has all the same values I do and can provide for our family.

Now about Nolan....we are 1 week into cast number 3. Dr. Shoemaker will be doing X-rays after cast number 4. There is a possibility that we might be done for a while after that cast. There will still be plenty of more steps in his treatment but it would be nice to at least be done with one of them.

I know it has nothing to do with his treatment but here are some pics of Nolan's first hike!

Angry vibes

I hate kaiser.....

It really has been a love/hate relationship this whole time but I am fully aboard the hate train.  Nolan's 2 week mark in cast number 2 was on Monday....does he have a new cast? No.  Why?  Because there are no appointments.  This is completely inexcusable!!!!!  If the doctor is that packed, hire another one.  But no, Kaiser is cheap and they resort to just not providing care for their patients.  I've called 4 times in the past week.  I finally called this afternoon crying hysterically to finally get through to someone who could help.  I now have an appointment for Monday and a follow-up for Weds the 16th.  I also have 2 new numbers to call "in case this happens again."  That was reassuring last time this happened.  Now I just translate it as 2 more lines someone won't answer "when this does happen again."

Cameron has been interviewing with a new company and I don't care about the money, location, or even travel.  All I care about is the insurance.  If he finds out he gets the job it would be the biggest blessing to be able to find a doctor who actually has availability.

Well I guess the schedulers ears were burning when I was writing this because he just called me with 4 appointments.  I guess I need to send some angry vibes more often.

Cast number 2

I've been holding out on updating the blog for fear of jinxing Nolan's good behavior. We went to see Dr. Shoemaker on Monday night and he was pleasantly surprised how well cast #1 helped to straighten out his foot. His leg of course will be slower at correcting.

As for adjusting, He slept ok Monday night...no crying but very fidgety. Since we co-sleep I got kicked with a heavy plaster cast all night. Plus he was up at 7:30 where he usually wakes up at 9 after a 7:00 feed. Tuesday went better. No fidgeting but he was up at 7:30 but went back down around 8:30 so I could get a shower. Hoping by tomorrow we are 100% back to normal...or as normal as is gets in the cast.

So far we haven't had to use any Tylenol for cast 2 but I do notice his patience is shorter in the cast then not casted. If something bothered him before he would fuss a little before wailing...now we go straight to wailing. Other than that he has been great.

Baby wearing has also gotten way easier! He does really well in our Tula carrier (kinda like an Ergo but WAY better!). I have also been using a ring sling for quick up and downs. It's working great for short trips or quick chores around the house but he will not sleep in it. I guess he likes the big hug feeling of his carrier vs. the sling. Pictures to come of how we have been managing to baby wear with the casts!

Cast number 1 done

Last night Cam and I took of Nolan's cast number one. This time it was because we were supposed to! We get number two on tonight. In the meantime here is an update on what his little leg looks like.

The calm after the storm

Well it took 3 days. By Friday my happy boy was back. I am still trying to figure out baby wearing options but hopefully he will work with me. Please enjoy the picture that summarizes the past few days. I love how his little attitude shows through. Hopefully it doesn't grow like his mommy's big attitude.

Nightmare

Every post I try to be positive about casting but it's getting harder and harder. I'm in a catch 22. I can give Nolan infant Tylenol and he is happy. However for his size I can only give it for 24 hrs before it can become harmful to his little system. Or I could just take the cast off and have my happy man back...but that doesn't solve anything. It seems like the only. option is to be a complete wreck while my baby cries for the next 3 months day and night. God I hope this gets easier.

Cast number one part 2

This morning we got the second cast put on. Well...technically it's still cast number one since number one only lasted 3 days! The doc was out of office all week last week so this was the earliest I could get in. So far so good. I do have to admit I am on edge since the last round went so badly. I went to the zoo this morning and walked around. He actually slept in his new Tula carrier and it's working perfectly with the cast. We did have a few tears putting him in but he got comfy pretty quickly. He has already slept a lot more this time around. Let's hope this time we can keep in on!!!!

70 hours

Cast number one lasted 70 hours. By Saturday morning at 10 am, I was soaking that sucker off. Of course I was a wreck. On one hand I want my little boy to be happy and comfortable and on the other hand I know he needs his leg to be fixed. I finally had enough when he was refusing to eat and the cast was beginning to cut the inside of his thigh. I'll probably get a lecture by the ortho office but oh well.

The first 48 hours

This casting thing is a little harder than I thought it would be. I honestly thought it would only really be inconvenient for me...yeah a little selfish I know. The little man has been having a really hard time adjusting to the cast. The first 5 or 6 hours he was good but once he realized it does not come off, he started screaming. That night he slept for 30 min then screamed for 30 mins...all night. The morning I dug out the infant Tylenol I was given at my shower (thank you Tim and Sarah!) and started giving him half the dose he should get. After trying all day...and failing...I went up to the full recommend dose. That stuff is magic! He slept from 8:50pm to 3:44 straight! We are still trying to figure everything out but I think he is finally getting used to the cast. The good side of all of this is that I sewed him some super cute baby leggings to protect his bare leg! I love my sewing machine!

Sad day

Ok I am probably just being dramatic but my little one had to be casted today. We got X-rays done 2 months ago and his leg was at a 45 degree bow. The X-rays today show the same. His body is not correcting it quick enough. The cast will help his leg grow straighter from now on...hopefully. The doctor wants to do 4-6 casts that are changed every 2 weeks. Hopefully he will get used to this extra baggage for the next few months. If this doesn't work he will have to have a surgery where they break his leg and reset it straight.

I'm trying hard not to stress but the cast makes everything real. For the past 3 months I've had a completely normal little boy. The only thing abnormal about him is that he is toooo damn cute!!! At least that's what the average onlooker sees. Now with this cast it's a neon light shining "look what's wrong with me!". Not just to everyone else but to me. It was so easy to ignore until we hit this point.
The positive idea I have to keep repeating in my head is that once his leg is fixed, by cast or by surgery, his leg will be completely corrected. He won't walk funny, he will be able to do any sport he wants to do, and he won't have a neon sign shining "look what's wrong with me.". I love my little man so much. I hate the idea of anyone seeing him as less than amazing.

Update

Ok I have been neglecting the blog. Being a new mom is amazing and stressful all at the same time. So here is the dish on Nolan's latest treatment.

On Jan 5th my husband and I started the trek to LA. While driving up I called Aetna to get his insurance number and tell told me I wasn't covered. I began frantically calling my hr department to get everything figured out and we found that when I called to add Nolan on to my insurance my open enrollment info was changed back to kaiser. My hr told me they would get everything straightened out in a few weeks. I took the opportunity to tell them I wanted to stay with Kaiser. It felt like one of those moments where it was meant to be. Now we are back with Dr. Shoemaker.

A few weeks ago I went to our 3rd appointment with Dr. Shoemaker. He was very upfront and honest with me which I appreciated. He explained to me that casting is the preferred treatment option but there has been no studies to show casting will improve his condition. He also told me that movement is important for proper growth and development. The other option is the stretching exercises we have been doing since has was a few weeks old. The decision was to take baseline X-rays, continue stretching exercises, and take X-rays again in 2 months. Currently the bow of his leg is at a 40 degree curve. As long at it is corrected to 35 degrees or less in 2 months then Dr. Shoemaker is ok to continue with just stretching. In the meantime we are stretching and hoping we do not have to do serial casting!

Doc visit #1

For the first time during the journey I feel like I have made a mistake.  On thursday Cameron and I went to see Dr. Shoemaker to get his evaluation of Nolan's leg.  He confirmed what Dr. Zionts told me a few weeks ago.  He has a bowed tibia.  Even though I felt extremely uncomfortable with Dr. Shoemaker treating a clubfoot case; I felt very at ease with him examining Nolan and going over what general treatment would be.  I really regret changing my insurance now.  He would have been a fabulous doctor.  Now I am having second thoughts about seeing Dr. Zionts.  He has been AMAZING to my husband and I throughout this whole mess but I no longer feel it is necessary to drive 6 hours round trip.  Clubfoot treatment is such a precise art and I was willing to travel to find the right doctor.  Now that his prognosis is not as delicate,  I want to explore what our options are here in San Diego.  At least I took the time to research every pediatric orthopedist in the Southern California area before Nolan was born.  Finding a pediatrician seems daunting enough now!  The standout option is Dr. Pring at Rady's.  She specializes in limb lengthening, shortening, and straightening.  I think the plan as of now is to make an appointment with Dr. Zionts and with Dr. Pring and make our decision after we have seen both doctors.  I feel bad changing doctors after everything Dr. Zionts and his team has done for us but I need to think of what is best for my own sanity.  Dealing with a newborn is hard enough right now.  I don't need to make my life harder if there is a doctor here in San Diego who can treat my son.  

Nolan is here!!

Nolan Parker Westfall arrived on 11/27 at 3:41 am. He was 6 lbs 13 oz at birth and was 18 inches long. He is healthy, strong, and absolutely perfect (except for his little left leg of course.) He was born after only 5 hours of labor and I was able to have him completely naturally! Recovery for me has been pretty quick. I came home from the hospital within 24 hours and I've been out and about since day 3. In fact Cameron and I took him out to San Diego's big Christmas festival at Balboa Park today and he was a champ! He is super chill and nurses well pretty much anywhere.

Now for the not so great news...he doesn't have clubfoot. I honestly don't know if what he has is worse or better...but it is definitely different. At the hospital the Kaiser orthopedist said it was still clubfoot even though the deformity looks much different. I was extremely skeptical and sent a pic to Dr. Zionts once we got home. He called me within the hour and said I was right, it isn't clubfoot at all. We have yet to get an official diagnosis but what Dr. Zionts believes we are dealing with is tibial bowing. His curved foot supposedly will straighten on its own but there is a good chance we will have to have a surgery to correct a leg length discrepancy later in life. We are still planning on seeing Dr. Zionts in LA since he is the only person so far to give us real answers. I was so impressed that he called so quickly and took the time to look over the pictures. I'm not even officially his patient yet and he has been more caring, compassionate, and helpful than any of the doctors I have seen. Don't get me wrong, Kaiser has been amazing for my prenatal care and my birth. I just don't trust their orthopedists. However, I do have an appointment scheduled with Dr. Shoemaker to get his opinion on Thursday. I know it will do little good in the long run but I feel kinda weird not using the resources that are currently available to me. More info to come on Thursday!