MY LITTLE HIPSTERS EVELYN & CHLOE – CHLOE’S DDH STORY – GUEST POST BY BROOKE NICOLOSI

We were blessed recently with the arrival of our second beautiful daughter Chloe.   Our girls are 3 years and 3 months apart and I guess this age gap played a big factor as to when we were going to have another child.  Having Eve in her brace so long, there was no way that I could imagine having another child, let alone being pregnant as I was still having to carry Eve everywhere in her heavy brace up to nearly 2 years of age, and in the back of our minds we needed to ensure Eve was 100% before we would even consider having another baby.  We wanted to finally enjoy seeing Eve run around and do all the things her friends had been doing so we totally made the most of it, going away on a holiday and again it might seem simple things, but swimming and not having the restrictions of a brace they were all new experiences for us.

Both times at our 13 week scans we were fortunate to find out the sex of both the girls and obviously had this confirmed at our 20 week scans.  We were informed that once again we were having a beautiful baby girl and we were both ecstatic as having a sister myself who I see as my best friend I was so thrilled Eve would also have this opportunity to grow up with a sister and share many great experiences together.

There was this elation and there was also concern and fear that I felt, and wondered straight away will she also suffer from DDH.   We had a follow up xray to check Eve’s hips with her surgeon and she now goes annually and I remember telling him I was pregnant and we were expecting another girl and he said straight away well once she’s 6 weeks I need to see her, we need to ensure she has an ultrasound and we thoroughly check her hips.  Despite all of this and so called warning signs I guess being there was a high probability Chloe would have this, I was prepared yet not so prepared.  It’s so easy for others to say “it’s not easy, but you’ve been through this before, you know what to expect”.  Well that is true in some instances but what you’re not prepared for is to only have 3 days of beautiful cuddles with your newborn, holding them close and tight to you, not having restrictions of the brace or having to put them into certain positions nor finding out you can’t bath her whilst she is braced.

Left; 3 days old in the Pavlik Harness. Right; 7 weeks old in the Pavlik Harness

After another quick delivery our beautiful Chloe arrived into the world, the moment we had been waiting for, seeing her for the first time and holding her, our family was complete and I couldn’t have been happier.    An hour or so after her birth the paediatrician came in to examine her as he was aware of our past history and that Eve had been missed and discovered much later so didn’t want us to encounter the same experience again.  I remember watching him examine her and then grimace and was thinking in the back of my mind “surely not, you’re not going to tell me what I think you are” and as I guessed yes he was.  He had the awful job of telling us once again our perfect little girl wasn’t so perfect and indeed she has hip dysplasia.  Instantly I cried and couldn’t believe this, then my tears turned to asking 100 questions and trying to pinpoint why this had happened yet again and what caused it, but no amount of questions were going to help, it is what it is and we again had to deal with this the best way we possibly could.

Chloe after being fitted in her DBB (Denis Browne Brace)

Our paediatrician could see I was devastated and we were given 3 days post birth of unlimited cuddles before her pavlik harness was to be fitted and worn 24/7.  After taking in this information as silly as it sounds, I was partially relieved we had a diagnosis and that we weren’t in the same predicament with Eve, having her misdiagnosed and then picked up late.  With this journey for Chloe I kept reminding myself second time around will be easier, I know what to expect and now that it’s been picked up so early she will be fine and 3 months will fly past and hopefully then she will be brace free.  True to our experiences with our girl’s hips, it seems simple but yet again it took a sharp turn and we were given news that we didn’t expect.

Eve comforting her sister after our appointment with the surgeon

A week prior to Chloe’s follow up appointment we needed to get an ultrasound and much to my surprise I was shocked to hear the lady conducting the scan say “this isn’t looking great her hip looks dislocated”.  Despite this being our second time going through this, nothing prepares you to hear that. Again I managed to leave the appointment without crying my eyes out.  Here was our gorgeous Chloe, sound asleep oblivious to all of this.  Straight away on the way home in the car I called our surgeon that had treated Eve, and within 24 hrs we were set to see him.  We arrived that day for our appointment and he greeted us with “Oh you guys, you just can’t stay away can you”! I needed that small laugh, as I knew what to expect, I took the films in to show him and he confirmed that yes Chloe’s hip wasn’t great, could be dislocated at any moment and to get her out of the pavlik and into the Dennis brown bar brace immediately. He then arranged her next 3 appointments and we are seeing him regularly.  Like I said I knew what to expect but still felt unprepared.  We left the appointment and it had been an emotional few days, feelings of frustration, was she in the wrong brace, have we just wasted 9 weeks and now have to start again, its going to be a long journey like Eve’s.  So with all of that, we left his rooms and before I put the girls back into the car my tears started to flow.  Eve being the beautiful soul she is came up and cuddled me and said ‘Don’t worry mummy, everything will be alright” and with hearing that I cried more! Here I was feeling so lucky to have two beautiful happy girls but on this journey once more.  Like with everything that life throws your way, we will be strong and get through this and come out the other side and like her big sister enjoy every minute of watching her at her dancing concerts and running around.

 

My little hipsters Evelyn & Chloe – Evelyn’s DDH story – Guest Post by Brooke Nicolosi

Being a first born, female, breech baby with genetic predisposition ticks all the boxes for potential hip problems. We ended up ticking 3 out of the 4 (first born, female past history in the family). Eve’s hips were thoroughly checked at birth and there was no detection of DDH. Being a first time Mum my focus was on trying to establish successful breastfeeding, have a content baby and a good sleeper! (Not asking much really!!!). I then started to attend my regular maternal health checks. We had settled into a really nice routine, the hard work was paying off, Eve was just a gorgeous, happy and ever smiling baby. I felt so lucky and I was loving every single minute of this new & ever changing journey of motherhood. Just when things were going so well they also turned bad so fast. We attended our 4 month health check and the nurse said “I am a bit concerned, I think your daughter may have Hip Dysplasia”. I remember at the time feeling a total state of panic, shock, deep concern and “how am I going to not ball my eyes out during this appointment”! We were then referred to get an Ultrasound to get an exact diagnosis and see if in fact Eve did have DDH.

Eve was misdiagnosed at 4 months and we were advised that she was fine, no sign of DDH despite me pleading to reconsider being we had the family history. When we returned for her 6 month Maternal Health Check I was asked why I hadn’t followed this up, as she was still presenting clear signs of DDH. Straight away I was referred to our pediatrician who 5 days before Christmas had the horrible task of telling me my perfect little girl had a bad case of DDH. Two days later on the 22^nd December our appointment to get Eve’s rhino brace fitted was arranged. I shed tears like I have never cried before, and I clearly remember being a mess on the way to the appointment and driving as slow as I could, making time drag on and for her to not have to be in her brace. I drove home and went around to get my beautiful girl out of the car and when I opened the door, this gorgeous face was beaming at me, oblivious to the fact her movement was now temporarily restricted and her Mum had tears streaming down her face.

Our life with the Rhino cruiser was about to commence, in fact for a far longer period of time than we had anticipated and were informed of. Eve was to be in the brace 24/7 and we were initially told it should rectify itself within 3 months. I thought, we can get through this, 3 months will fly past. After the first week alone it felt like 3 months, my beautiful, content, happy and great sleeping baby was utterly miserable and I felt totally helpless.

She could no longer work out how to sit up in the brace, regressed quite dramatically which is normal and her sleep, well what was that! The first few nights Eve would wake screaming after 45-60mins every single hour. She was in tears and so was I and my husband. After many sleepless nights, I racked my brain to work out how on earth to make her comfortable so she could get some rest and much needed sleep, and it was from here that I just decided I needed to deal with this and be there for her 150% and we would do whatever it took to ensure she is comfortable and back to being our happy girl again.

It was a lot of trial and error but after a lot of research, hard work and persistence things started to pay off and our gorgeous little smiley Evelyn was back!

Truly, kid’s resilience amazes you, whilst we as the parents are doing it tough seeing them trying to work out how to do things they previously could, they just get on with it and astound you each and every day. Eve continued to do this during her DDH journey and despite the restrictions she crawled, rolled, climbed up to our couch and eventually walked in the brace. She also attended care during the time she was in her brace and this only encouraged her more. I would arrive to collect her and find her holding the carers hands and jumping on the mini trampoline or on the rocker squealing her head off in excitement, she wasn’t going to let the brace and not being able to walk properly stop or hold her back in any way. Her determination was above & beyond as too our admiration of her during both times she was in her brace. We also found that despite the physical restrictions that held her back her speech and hand/eye co-ordination excelled and she really worked on these assets rather than letting the brace hold her back.

Eve was regularly monitored and at times it felt like all I was doing was taking her for ultrasounds/x-rays and seeing her orthapaedic surgeon, then in June 2012 I felt like this was all worth it. He gave us the news we had been wanting to hear for those long 6 months “She’s doing great, her hip is where it should be and she can now come out of the brace”. I think I could have done back flips and cart wheels coming out of that appointment I was ecstatic, our baby girl was going to have freedom to move about but most importantly start to stand, and walk, I couldn’t wait. Eve still needed to be checked regularly as he mentioned to me prior to leaving that there are a tiny percentage of children that do regress for no known reason and have to go back into the brace or worse still surgery and be fitted into a spica cast. I don’t know what it was but instantly my elation turned sour and I just thought “why did you have to tell me that” I will now worry and wonder if that will happen and deep down it was like I had a gut instinct we would travel this road again.

Four months later in October, I was at work we had been to have Eve’s follow up x-ray and the results went straight to our surgeon. It had been a few weeks since her x-ray and I hadn’t heard anything so assumed no news is good news. Then my mobile rang and it was her surgeon, straight away by the tone of his voice I could sense something wasn’t right. Then I heard these words “I truly am so sorry Brooke, but Eve’s hips have regressed and I’m not happy with this and we need to get her refitted into another rhino brace urgently”. My heart sank, I didn’t know whether to cry or scream and instantly like a protective lioness over her cubs, I got upset, angry and frustrated at him which thankfully he understood. I am sure over the years he has had worse and many a tearful, emotional mum taking their frustrations out on him. After the anger had subsided and asking him “why” so many times, I burst into tears and sobbed uncontrollably and told him I would call back I just needed time to digest this.

Here we were our darling Eve was 17 months, the process was that difficult at 6 months how on earth do I get an active toddler, a far more mobile toddler to go through this all over again.  When Eve was braced the first time I allowed myself 24 hrs. of self-pity, feeling sorry for myself and “why me” and cried and cried to I couldn’t cry anymore. After this 24 hour period I told myself I need to snap out of it and be there for Eve and get through this hurdle…………..again! With time and some clearer perspective I could see that yes this is another obstacle along the way, but it could be far worse and we will get through this with lots of love and support for our Evelyn.

So “D Day” arrived, the day we needed to have her fitted with her new brace. It was like she knew what was awaiting her, the minute we arrived, my happy go lucky girl was upset and didn’t want to go in. The sobbing turned into hysteria being fitted and I will never forget the car trip home. I had my mum in the back seat with her and Eve was wailing, totally inconsolable. I couldn’t think straight, she was so distressed. I had to go to the shops and get a few things and like most of us girls it seemed a bit of retail therapy with a cheeky cupcake thrown in cheered up my little princess! Before I knew it she was laughing and smiling again. To my amazement and more so surprise Eve was quite the opposite in how she dealt with the brace to how I imagined. I was petrified of all the regressions (sleep, development etc) but Eve being Eve just went about things in such an admirable manner and before I knew it was crawling, laughing and standing in her brace and next stage was becoming a maniac on her bike which soon became her “legs” and her freedom to move about and keep up with everyone else.

Again with our first experience of Eve being in her brace, we had trying moments and some tough times. There was times of feeling sorrow and blaming myself for this was it how I carried her during pregnancy that caused this, no one wants to see their child go through anything. But like most things despite the hardship and tough times, we got through this, and with perspective can see that yes this wasn’t easy but in life there are far worse things and some irreparable unlike a clicky hip.

Becoming a first time parent and going through this made me even stronger than I imagined I ever could be, and with hindsight and knowing the outcome of how perfect our Eve is now, its irrelevant that she was almost 2 by the time she walked.  She proved that despite starting these things later in life she’s now going to make the most of it and I love seeing what a beautiful ballerina she makes, seeing her running outside pretending to be wonder woman, dancing and singing, seeing her enjoying these simple things makes this experience all worth it.

Hands On Daddy

The Hubster Therance and his Minions Ashley and Zahra

With Father’s Day this Sunday I thought I would write a post on the awesome male in our home, the hubster AKA Therance or as the minions would call him Daddy.

Pampering time, Painting Miss Zahra’s nails after brushing her hair

When it comes to dads my girls hit the jackpot, they can thank me when their older. Therance does the lot and more, he cooks, cleans, wipes butts, changes nappies, brushes & braids hair, does teeth inspections, catches vomit & poop, he’s been pee’d, pooped and vomited on without a complaint.

He does the school run, volunteers at school, kills the monsters, kisses the boo boos better, does the sleepless nights, sits hours in the ER, dresses up, dances to wiggles, be’s the patient, sings Let It Go, endures the years of Dora the Explorer and still doesn’t complain.

Dancing to The Wiggles

He teaches them right from wrong, how to ride a bike, how to chew with their mouths closed, how to box and do flips on the trampoline, to be themselves and always hold their head up high and to stay strong and most importantly how to have patience, compassion and to be respectful to all.

He is their Hero and they are his #1 fans.

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