Boots and Bar, Here we come!

So three weeks have past, and it is time. . . We are very hopeful to be done of the casts forever! At this point, if I never see a cast again it will be too soon! We spend another wonderful night with our friends at RMH, Man I really love that place, and we are so grateful to them as well! So we soak off Lilybear's last set of casts. . . wait, I should explain that part. The top half of Lilybear's casts are the fiberglass stuff, and we have to peel that off, and it just unravels. The bottom half is made of plaster of paris. For this we soak Lily in a tub until the plaster starts to let go, so we can unravel the rest of the casts off. It's a process, but better than using a casting saw on a baby! So the casts come off for the 14th, or 15th time. I've really lost count of how many times she has had casts put on. We take our Lilybear, and Peanut to the IWK for our last appointment for 3 months! I can't even believe it, 3 months with out a weekly trip to Halifax?! What on earth are we going to do! HaHa. We have Lilybear fitted for her new Boots and Bar brace, and are taught how to put it on.

Her feet are laced, and strapped into a snazzy pair of shoes with a metal plate on the bottom. There is a screw on the bottom of each shoe. The shoes are then fixed at a 70 degree angle to a bar via some nuts that hold them in place. Here is Lilybear's First Photo in her brace :)

The most exciting part about this day. . . Knowing that when we get home, I can give Lilybear a bath, and if I want to, I can do it the next day, and the next day and the next! I don't have to wait for every Thursday to give her a real bath anymore! Silly I know, but we were both tired of sponge baths! So excited, and looking forward to no more leg cramps, wearing little pants on her, and NO MORE CASTS!!!

Here are a couple of photos of how beautiful her stinky little feet are before we went to get her brace put on :) Thank you Dr Logan, for these beautiful straight feet!

Tenotomy . . . but not in the usual fashion!

So we are having Lilybears Tenotomy today on both of her heels. For those who don't know what I'm talking about, please read the following except from a hand out I received from the IWK: "Tenotomy (needed in 80% of cases) is a release (clipping) of the Achilles tendon – minor surgery – local anesthesia" This process is usually done in the Orthopedic clinic, under local anesthesia. . . But . . . Where Lilybear was much older than most children this is preformed on, we we advised that they would put her under anesthesia, and preform the tenotomy in the OR instead. This would prevent her from squirming, and potentially causing issues while they were trying to clip her tendon. Usually children having this done are a fair bit younger than Lilybear, and thus they do not fight as hard as she does when they try and hold them still. 


So off to IWK, and into a waiting area for pre-op. They weighed Lilybear, and stuck her with an IV. Lilybear was very cranky at this point as she had not been allowed to eat since 7 am. Her surgery was scheduled to start around 12pm, but she ended up having to wait for the OR as they received an emergency call. Lilybear did not get into the OR until about 3pm! Poor little thing was starving, and crying. I can just picture what was going through her head as she was entirely breast fed at this point. . . "Mom, WTF? Your boobies are right there! WHY AREN"T YOU FEEDING ME!?!?!" 


We waited in the waiting room for the phone to ring to tell us Lilybear was out of surgery. Three other families were waiting as well, and of course, we were last to get our call. Lilybear was out of surgery, and in recovery. They told us that Dr. Logan would be out in a minute to let us know how everything went, but advised that Lilybear was doing great, and surgery was a success. They told us that they would come and get us when Lilybear woke up from her anesthesia. Enter Dr. Logan, our hero. He told us everything went perfect, and we may even be able to take Lilybear back to the Ronald McDonald House instead of staying at the IWK for the night, but we had to see what the anesthesiologist said. It seemed like hours and hours before they came to get us to let us see our Lilybear. . . Finally she woke up, and I got to hold her in my arms again, and feed her. She was hooked up to an IV, so wasn't very hungry. Can you tell I was happy to have my baby girl back??

We got the go ahead from the Anesthesiologist to take Lilybear home, and we were on our way. The following morning we left for home, and spent another wonderful night with the Staff and Volunteers and families at the RMH! We love that place! These casts would stay of for a total of 3 weeks to give her tendons time to heal in their stretched position. That was fine by us, no road trips for 3 weeks! SWEET! :) And after taking this set of casts off, which would hopefully be her last set ever, we would move her into a brace which you will read about in my next entry!

A Bedtime Story

One of the challenges of having a baby with club foot, or any new born really is the lack of sleep. With Lilybear we had a few more challenges. . . Her immunizations have had to be delayed due to having casts over her legs where they would normally give the injections. Another struggle we have had to face is sleep, or lack of it really.

Lilybear likes to kick in her sleep. . . wouldn't be a big deal except she has big ol casts on her legs, and a metal rim around the top of her bassinet that she loves to kick. If the clanking wasn't keeping me awake, the leg cramp issues would. Lilybear has had a few leg cramps that make her very irritable, and fussy. She wouldn't settle for us, and we couldn't figure out what was wrong. She wasn't hungry, or wet, or dirty, or too hot/cold. Then one night DH laid her down on the bed and started doing the bicycle motion with her legs. . . and Lilybear laughed! Music to our ears! We had finally figured out why we had such a fussy baby at times! 

We started doing this when she was cranky, and we couldn't calm her any other way. The change was immediate, and we determined she was having leg cramps from not being able to kick her legs on her own. Now if she would only start sleeping through the night.

Another tip for sleeping, we found that she would sleep the best on her belly. So we did this for nap times, and it was a huge success :)

When the Casts come off, I have a different baby!

I had to make a post of this! One of the most heartbreaking things about treating club foot, is seeing how happy Lilybear was when we would start taking off her casts. . . She def knew what we were doing when we started, because we got this reaction:

Soooo happy!!!

Every time we took the casts off, it was like having the happiest baby in the world!! Then a short time passes, the casts go back on and my grumpy bear is back again. Good thing I love you even when your Grumpy :)

RMH, IWK, and a little bit about casting

We had two trips to IWK this week for cast changes. . . But let me tell you, our experiences have been night and day compared to our hospital in our home province! The people at IWK actually love what they do for starters, and the love kids! Eva was very excited this week as we spent our first night at The Ronald McDonald House Atlantic Canada! Let me tell you, Linda and all of the staff and volunteers there made us feel right at home. We met a few other parents there, and seeing what their children were going through . . . Crooked feet seemed like a walk in the park. That's not saying that it wasn't still hard to see my baby girl getting her new set of casts put on, just that I had a better appreciation for the fact that it could be a whole lot worse!

The other great news that we received this week was that we qualified for Irving's Fuel the Care program. They gave us some gas cards to help us with the cost of traveling to, and from  the IWK. :)

A little about the casting process:

Picture this for me, you have a beautiful little baby . . . Your baby is so happy as she/he is now able to kick their legs freely, and squirm around . . . Now picture having to hold down your beautiful crying baby while a Dr. and a Casting tech wrap plaster cast from the tip of their toes to their diaper line, all while stretching his/her foot into what appears to be an un-natural position. This is not meant to scare those of you that will, or may be going through this with your little ones soon, but I read too much information before having Lilybear that sugar coated the process. The most frustrating thing in what I read looking back now was the constant reminder that "you're not hurting them". . . well golly gee thanks, I know we're not hurting her, but making your baby scream and cry still isn't fun. . . . it's actually quite heartbreaking. Now that I've said that, I will also state that it does get easier as time passes, and with every casting your babe will cry a little less, and fight a little less.

IWK - Where Dr. Know what their doing!

So August 26th was our first appointment at the IWK. We drove to Halifax the night before and stayed in a very nice Hotel for the night, as our appointment was in the early morning, and it is a 4 hour drive to get there. We were nervous, wondering if the surgery would be done that day or not. . . When we got in to see them we got bad news yet again. Due to the Dr at home not knowing how to correctly treat club foot as he claimed that he did, we had lost all correction in her feet. . . you can see in the photo how crooked there were after only a week. . .

Then came the words I didn't expect at all "so it looks like we are starting at square one. . " Said Dr. Logan (our AMAZING Orthopedic Surgeon at IWK). Dr. Logan was upset at all Lilybear had gone through, and then to have to start all over again. The RN assigned to Lilybear, Jennifer, was also amazing! They really treat you like a person at IWK! They understand when you get upsetting news that you will be upset, and NEVER treat you like you're wasting their time! So they set us all up with a new set of casts, and an accelerated casting appointments to try and catch us up on lost time. We were to drive to and from IWK (4 hours of driving each way), one or two times a week. We will do what we have to do for our Lilybear!

First set of casts Applied using the PONSETI method of treatment!

NOTE TO CLUBFOOT PARENTS: PONSETI IS THE MOST SUCCESSFUL TREATMENT. ASK YOUR DR ABOUT IT, AND IF THEY DON'T FOLLOW IT, ASK FOR SOMEONE THAT DOES!

Done All I can Do. . .

So after 2 months of castings, making one or more trips to the hospital orthopedic clinics every week. . . Our Orthopedic Surgeon final advised that he had done all he could do, and we were referred to the IWK Children's Hospital in Halifax, NS. for surgery. Our "dr" and I use the term loosely, advised us of this after removing the 7th set of Lilybears casts that had been on for 2 weeks this time. . . This is what we found under those casts:

Bruises, broken blood vessels, and feet that were not corrected. . . I cried that day too. Our "dr" advised us that we would just leave the casts off for the week till our appointment at the IWK, and to "stretch" her feet. He very briefly showed us how to stretch them, told us to do it every diaper change, and then promptly left the room very rudely like we had been wasting his time.

RED FLAG FOR PARENTS: IF YOUR DR TRIED TO TELL YOU TO LEAVE THE CASTS OFF FOR ANY PERIOD OF TIME AND "STRETCH" THE FEET, SEEK NEW MEDICAL STAFF! See next posting for more info!

Series of Casting Calls

Here are some snap shots of the casts that were done on Lilybear the hospital in our home province, by the Orthopedic surgeon. . . . We made at least one trip to the Hospital with Peanut and Lilybear, and sometimes DH when he wasn't working for 8 weeks. We Loved the casting techs, they were great! Jim and Lori were very nice to us, and spoiled Peanut with Popsicles which she though was fab! Sometimes the wait was short, sometimes longer than 4 hours! Our Orthopedic surgeon was not the friendliest, but we thought we were doing what was best for Lilybear, and THOUGHT he knew what he was doing. Apparently not!!! Please keep reading and you will understand!

CASTING TIP: BABY LEGS, OR LEG WARMERS ARE AMAZING FOR KEEPING CASTS CLEAN! :) just sayin'!

For Keepsakes!

Lilybear's first set of casts. . . both were kicked off in less than a week!

WARNING: Parent of club foot children. . . this is not normal as we were told it was!!! Keep reading and you will see what I mean!

NICU Life is HELL!

For those of you that have never had to be there. . . Let me tell you. . . NICU life is no fun. Being in hospital is bad enough with out getting sleep, being roused out of bed every three hours to go feed the baby, not being able to have the baby room in with you. . . and then the icing on the cake was being discharged before your baby! I was stuck in a "care by parent" room, which I was told was so I could stay near my baby. I was treated so rudely by the nurses of the MAT ward as I was "no longer their problem" and they routinely forgot my meals.

I do have to say though, that the NICU staff was great for the most part. The only thing that really bothered me was the girl who looked about 13 years old, with no children of her own, trying to tell me how to  nurse my baby. Hello, I have done this before. I will smile and nod so you walk away, and then close the curtain around me and MY baby, and feed her the way that I want to feed her. If she falls asleep on the first boob, I will let her sleep! I will not wake my baby, if she is hungry, she will wake up and let me know. argh!

I can say that I am sooooo happy that I was only in there for a week with each one of my girls. I have so much respect for the parents of multiples and preemies that do that for months on end! They are some of the strongest people I know! I only got a glimpse of what life is like for you all, and I will say again how strong, brave, and amazing you all are!

Time to go home! I am sick of this place!

The casting call

Day Two. . . The casts go on. Here are some photos of Lilybear during the first few days in NICU.  

You can see her little feet in this picture ^

 Lilybears first set of casts ^ with Daddy's artwork below

 A very proud Peanut ^

 The three people I love most in this world!

The girls ^ Peanut checking out the IV in Lilybear's head.

The day finally comes!

We welcomed our second beautiful baby girl into this world at 7:23pm on June 21st 2011. We had our struggles even with this.

I woke at about 2 am. Usually Lilybear was pretty active at that time, but something felt off. I didn't feel her move more than 8 times or so in a few hours. I was concerned, and so woke my husband (whom I will refer to as DH - Dear Husband going for ward), and we got my parents to look after Peanut (our daughter - 3 yrs old). We headed into L&D for a non stress test. After three hours, they were not happy with the results, so asked me to come back in again later that afternoon to try again. There was a good heartbeat, just not a lot of movement. We went home, and I laid down to try and get some sleep. My water broke around lunch time, and I started to have contractions that were not very severe, and were all over the place for timing. I called L&D again to see if they wanted us back in straight away, and they asked what color the amniotic fluid was. Good question I thought and I looked. . . green? That can't be good. Meconium in the fluid. . . and they asked me to come in as quick as I could so they could assess the situation.

I won't give you all the gory details, but there sure were a lot of people in that delivery room. I had an OBGYN, and two nurses for me, and our Pediatric specialist (for the clubfoot, she was born with Bilateral Clubfoot (meaning both feet were affected), Two or three nurses from NICU, (including my wonderful Auntie Anne  who stayed for a double shift to look after Lilybear for me :) and a respiratory therapist for the potential Meconium Aspiration. Clubfoot, risk of infections, and a "leaky lung." I got to hold my baby for all of 3 seconds, and they had to take her up to NICU. Flash backs to the birth of our precious peanut. . .who also was in NICU for a week for a partially collapsed lung and infection. 

When I finally got to see Lilybear again, she was hooked up to oxygen, heart monitors, and wires everywhere and in an isolette.  All I could think about was how beautiful she was. Her feet didn't look  near as bad as those pictures online. . . She was perfect!

The waiting game

Our story begins in the office of my OBGYN. I sat all alone in the exam room. Waiting for the OBGYN to enter. He enters the room, cracks a few jokes, and then breaks open my file. I see a concerned look cross his face, and wonder what's wrong. Then he tells me the words that I wonder if I will ever forget. "The results are back from you ultrasound. . . Looks like your baby may have clubfoot. It is a deformity of the feet, but don't worry, they can fix it." My mind started to race 100 KM an hour. I had never hear of club foot. . . What would the baby look like? Will kids make fun of my baby in school? Will my baby walk? What sort 'fix' was he talking about? How severe is it? How long is treatment? Why my baby? was it something I did? Those and about a million more questions were racing through my head. I didn't cry. . . I just sat there. . . feeling alone, and confused. I asked a few questions. Every response was "I will refer you to a pediatric specialist, and they should be able to answer all of your questions."

"Clubfoot: A common malformation of the foot that is evident at birth. The foot is turned in sharply so that the person seems to be walking on their ankle. The medical term for the common ("classic") type of clubfoot is talipes equinovarus. Clubfoot can sometimes, but not always, be corrected with a combination of surgery, bracing, and physical therapy. When it cannot be fully corrected, special shoes and braces are available to help the person achieve a more comfortable gait and avoid stressing and deforming other muscles and bones."  *

Exam over, and I walk out to the waiting room. I am still trying to process what just just happened. . . A good friend is waiting to see her OBGYN with her Husband. She smiles, and gets up to hug me. She seems excited. . . too excited. How can she be so happy? I smile back, and tell her what the Dr just told me. She looks worried, and concerned, but I smile and act like everything is fine. "No big deal." I say to her. "He says they can fix it." Good bye hugs, and I leave the room. I get to the elevator, and it finally sinks in. . . my baby isn't perfect? How is that possible? I text My husband the news. I don't remember exactly what I typed through my tears. I then somehow managed to get in the car and drive back to work. I explained to one of the higher ups at my work that I would be unable to finish my shift. Through my tears I tried to explain that I had just received news about the baby at my appointment, and would fill them in later, reassuring her all along that no," I didn't lose the baby. The baby is fine." . . was my baby fine? What the HELL IS CLUBFOOT?

The following days and weeks are blurry at best. Roller coaster emotions of no knowing . . . I researched, My Husband researched. . . We looked at pictures, read stories online, signed up for support groups online. Then FINALLY, we got our appointment with the pediatric specialist. We wrote out all of our most important questions about what treatment will we do? How severe is the condition? Who will do the treatment? When will treatment start? How long will treatment last? and so on. We arrived at our appointment, and had to wait quite a while to get in. When we finally did I was a bundle of nerves, wound so tight I don't know to this day how I held it together. We listened to what the Dr had to say, questions in hand. . . He answered every one of them with one statement "we won't really know anything until the baby gets here. . . " ok. . . I am 24 weeks pregnant at this point. . . If the baby carries till term we have at least 16 weeks . . . 16 long weeks until we will even know how severe it is, and what the treatment will be? Needless to say we left the appointment frustrated, and emotionally exhausted.

And so the waiting game began. . .







* Excerpt taken from  the following site: http://www.medterms.com/script/main/art.asp?articlekey=2762

Preface:

I wish I had of started this sooner than now, as we have been through so much of your journey already! This blog is for you firstly, so you will someday know all of the obsticals that you have overcome. Secondly for myself, as an avenue to express the challanges, and victories we face together. And lastly for all those parents out there that just got the frightening results back from their OBGYN that told them in a sense that their baby is "not perfect". This blog is to tell your story, your quest if you will. Lilybear, and the Quest of Congenital Talipes Equinovarus. :) Before I begin to tell your story, a few short words:

To Our LilyBear: I will state that you are perfect, in every way. You are my hero in ways I never thought possible. You have overcome so much in your short little life, and I just can't wait to see the beautiful, strong, independent person I know you will be.

To our Peanut: Being a big sister to Lilybear, well, it hasn't been easy at times. You were so great with all out hospital visits, and travels. You were so patient when mommy had to do things for Lilybear, and with Lilybear. You are my hero for being the best big sister in the world. If I ever had a big sister, I would have wanted her to be as loving, kind, gentle, and beautiful in side and out as you are.

To My wonderful Husband: Thank you for being my rock. Thank you for putting up with my roller coaster emotions, and moods. Thank you for working so hard so that I can stay home and look after our beautiful children. You are my best friend, and the most wonderful man I know. I love you more with every passing minute, and I am so happy to grow old with someone like you :)

And lastly, to the parents that are reading this because they want to know what is in store for them with their little baby, who may still be in mommy's belly. Be brave, Chin up, and Deep Breath. It is frightening; the unknown. But take comfort in knowing that you are not alone, and that these fears will pass, and you will be blessed with a wonderful child who will just blow your mind with what he or she will do :) Read on, and know that the road may not be easy, and it may not be perfect, but it will be worth it!