Overnight for 2 Appointments

Joelle was breech for many weeks in the womb and due to the breech position often times they have problems with their hips after they are born. Joelle had to get a routine ultrasound at BC Children's to check the hip joint to see if they were in the socket properly. First initial thought the technician said she looked good...but our visit to see the doctor on Friday turned out not to be the case. Joelle is now in a hip brace 20 hours a day for 6 weeks and then we will have another follow up appointment with ultrasound to check the hips again. This is unrelated to her FH. 

The ultrasound technician was fun and loved to joke around with us. We told her about Joelle's condition and she said that we seemed like calm confident parents for having 1 child (yes a bit of a chuckle inside). We told her Joelle was our 5th baby and she stopped her exam and looked at Geoff and I and said "Are you even old enough to have 5 kids!?" A compliment that we still look young I guess!

I booked a hotel in Vancouver as close to the hospital as I could. My brain function and thinking patterns have been exceptional and I accidentally booked a hotel with 2 double beds and later Geoff realized I booked under an american website making it cost way more that I had thought was my good deal. My bad! There was no way I was going to downgrade from our king bed at home to a double so we comfortably slept in different beds...We both agreed maybe we should have bought 2 double beds for our house! Ha! On Thursday we explored parts of Kitsilano and Queen Elizabeth Park. We checked out the Bloedel Conservatory and later went to the H.R MacMillan Space Centre. Both places we've always wanted to take our kids on a day trip, after being to both we realized that going with the 3 of us was a much better idea. The weather was amazing as well as the views. We had some time to get some shopping in as well.

This sums up Joelles experience in Vancouver with us. She is a 5th baby that thinks she's the first child!

Waiting to see Dr. Alvaraz and Dr. Cooper

Her smiles make up for her crankiness.

 Our long awaited appointment came to get further assessed by both doctors. Dr. Alvaraz and Dr. Cooper discussed with us the first steps we should take for Joelle. Her foot isn't sitting directly under her tibia which if untreated won't be able to bear the weight of her body as she grows. At this point they also are uncertain of her leg length discrepancy (LLD) will be, as she grows it will become more apparent so we don't know what the long term treatment will be at this point. For now, we will work on her foot so with that came an ankle foot orthotic (AFO). They cast her leg/foot for a mold that they will take to another clinic to make for her.

Jared is our AFO guy. Jared and his assistant (can't remember her name) was great and very thorough with explaining everything to us newbies. It was a good but very long busy visit. The clinic was buzzing with people coming and going. After her mold was done for her future brace that will be ready in 10 days. We had the privilege of meeting another family with Fibular Hemimilia. It was great to talk to them and meet them and share our worries and fears and the dynamics of dealing with such a rare deformity. They had a 8 month old boy going through it and showed us his brace he needs to wear. We talked quite a long time with them and getting to know them. I hope we meet them again down the road. FH is so rare its 1 in 50,000 births. We have a very beautiful special girl to watch grow up and it will be neat to connect with others who are going through this same journey as us.

Joelle finally asleep with her hip brace on. I miss the

tight newborn snuggles already...she now needs to learn to sleep not all wrapped up anymore. 

Our babies :)

Camron April 5 2008

 Alivia June 3 2010

Abigail October 12 2011

Tara April 6 2013

Joelle March 25 2015

Fibular Hemimelia

Our perfect little girl...
Joelle has now been officially diagnosed with fibular hemimelia. A little tidbit of info about her condition. Joelle has her right leg affected. Her leg is shorter than the other and is missing the fibula completely. She is missing her ankle which is part of the fibula. The discrepancy at our first visit to BC Children's Hospital we were told it is approx 2 centimeters shorter than the other leg right now.
Our visit to the Children's Hospital was not how we expected it. We were rather disappointed with the visit because we left with so many questions we had written down with no chance to talk to anyone about it. We felt very rushed with the visit with the doctor we seen. I'm not sure if when we go back it will be a better visit for us as parents and not just a number to been seen quickly. End of May Joelle goes back to see 2 doctors this time and be fitted for a brace (that's what the doctor called it). I don't know what the brace looks like or how it will fit on but we will find out end of May after her ultrasound is done. Two visits this month for her.

Fibular Hemimelia explained

Fibular Hemimelia is a partial or total absence of the fibular and is the most common form of lower limb deficiency present at birth. There are two long bones in the lower leg, the thicker one is called the tibia and the thinner one is the fibula. With Fibular Hemimelia the tibia is shorter than normal and the fibula is missing or underdeveloped. A leg affected by Fibular Hemimelia will look shorter than an unaffected leg. The tibia may be bent and the foot may also be smaller than normal, bent outwards at the ankle and may have fewer than five toes. The knee is often also misshapen and may move abnormally.

Usually only one leg is affected, with the right fibula affected more often than the left and males are 50% more likely to be affected than females.

Diagnosis and causes 

Severe cases are likely to be seen at scans during pregnancy. In milder cases it may at first be thought to be a foot deformity but when the shortening of the leg becomes more noticeable and the leg is X-rayed the full picture can be seen.  Most cases of Fibular hemimelia are thought to occur for no reason.

How can it be treated? 

Treatment will depend on the severity of the condition and how normal the foot is.

• If the foot is reasonably normal it may be possible to lengthen the leg using the Ilizarov apparatus
• If the foot is twisted outwards to the side it may be possible to correct it sufficiently using surgery
• If the foot is not sufficiently normally formed and the tibia is too short it may be best to amputate it through the ankle using procedures such as the Syme’s or Boyd amputation and fit a prosthesis. (an artificial limb)
• In cases where the fibula is present and the shortening is not severe the treatment is usually leg equalisation either by slowing growth of the other leg (epiphyseodesis) or leg lengthening.

Joelle's right foot x-ray. You can see she is missing a toe and her bones are quite out.

Getting the x-rays was a tad difficult. J moved around so much they had to use so much velcro and tape to keep her still. She screamed and didn't like it at all.

Deep breathe for me as a mom watching, but this is only the start.

C Section Recovery

My pregnancy went well with Joelle other than all the typical aches and groans that come with it. It was more difficult than my other pregnancies because my morning sickness prolonged for quite some time and I had 3 full time kids at home to take care of. We moved when I was 8.5 months pregnant and because Joelle was breech I now know why I was in so much pain while moving and getting around. Her head was pushing up in my rib cage causing a lot of discomfort and a hard time breathing. I remember standing singing in church and unable to keep up with the congregation singing. A bit strange for a 27 year old but I soon discovered why.
It was emotional to accept that I had to have a c section. I was very nervous about the operation and frustrated that things couldn't go the way I wanted them to go. The experience was like none other and not one I would choose to repeat. Giving birth naturally is a much easier way to go! Don't kid yourself thinking that laying on a stretcher and being numb and operated on is enjoyable... there's so much disbelief that c sections are an easy way out but they truly aren't. I am now almost 6 weeks postpartum and feeling good but still recovering. I over did it a few times and payed for it. My muscles inside that were cut to deliver Joelle are at war with each other. Occasionally I am doubled over in pain from muscle spasms. I hope this doesn't last and it all heals up properly.

After Joelle was born and I was getting stitched shut and the doctors are talking about a ski trip I layed there praying to give me more strength and not have a break down. My arms were strapped down to the sides of the bed and I could feel tugging and pulling but no pain, so strange! Geoff had left my side to check our new baby out with the pediatrician. Geoff came back to my head and said that our baby has health issues. She was born with 4 toes and 2 of those toes are fused together. It was alot to take in and to hear. After all our babies were born Geoff would always say "10 fingers, 10 toes". Well this time it was not the case... "10 fingers, 9 toes". What?! I was confused and still lying there getting stapled shut by the doctors. I didn't know what to think. The pediatrician came to my side and said there was an issue with our baby and he had never seen anything like this before and was not able to tell us at that time what it was. He wanted to examine her again right away to check everything over and hopefully give us a name or more info on what we were going to be dealing with. He explained to me what it looked like cause I had not seen her yet. Soon after they brought her too me but all bundled up. She was beautiful and perfect no matter what lied underneath the cozy blankets she was wrapped in!

What all happened after that is history, I won't go into detail about the comings and goings of c section. You'll have to come over for coffee if you want to hear about all that.