Tomorrow

It's almost time. We have been waiting for a long time and now feels unreal that we are so close to get this done. How does it feel? I feel numbed, like being inside a movie and everything moves so slow. My hearth is aching already trying to imagine her in a little hospital gown with tubes and things coming out of her. How could this be happening? I need to stop asking myself silly questions that can't really be answered. We need to be strong, put our faith in God and the doctors and be grateful that we can leave everything behind us in a few months unlike many parents and families with sick children. Happy thoughts from now on.

Four days

Today is just a few days before the surgery scheduled this Friday 27th May. Valentina has a runny nose, I am not feeling very well but I am fighting with everything that I have to not get sick, I will certainly get awfully sick as soon as all of this is over, but at the moment I am not willing to let my body give in and get sick, not even an option. Amelia is doing great, interacting, baby talking, developing her little self every single day, is just amazing to watch. At the same time is very difficult to imagine this little sweet girl going through what she's about to. She just doesn't have any idea of what's to come and that kills me, it makes me feel so guilty that I feel sick in my stomach. We mothers know a lot about guilt doesn't? I just can't help it. Four more days to go, we are holding on like never before. Keep strong my baby girl.

A new date

Today is 19th of April. Today was suppose to be just a few days away from the surgery but now we are facing more waiting. Amelia had a cold a couple of weeks ago, thought she was going to be fine, on time to have the surgery as scheduled. Little I knew about hospital protocol for these things. She will need to be cleared from any symptoms for at least six weeks. She's fine now, not even a runny nose. Is very hard to sit around and wait for a new date from the hospital. We had it so close to get it done and go on with the rest of our lives. In the bright side, what she had was not only a common cold, she caught a virus called RSV that can be quite dangerous for small children. Somehow she managed to get through it with little discomfort and not severe symptoms. She's a strong little girl. This all for her own good I have to keep telling myself. 

One week from now

Today in one weeks time will be the day before the surgery and that's starting to resonate in my head. Amelia is recovering from RSV doing much better than a few days ago but still waiting to hear from pre admission at the hospital. The though of having surgery postponed makes my tummy go agh. I am trying to remain positive, it will happen when has to happen. 

Pre operation tests and last minute cold

We are two weeks from surgery and somehow Amelia managed to get a cold. A nasty, coughing and being miserable day and night cold. We went for the pre op exams and they were less full on than I thought. We stayed there for two hours, talked to Nicole the craniofacial team nurse and did the blood tests. Amelia was a star, she never lacks a smile on her face even after having her blood taken, nothing like her mum. 

Questions and no answers

I am finding myself with a bunch of questions lately and not that I am expecting an answer from above, but why is this happening to us? why to a little baby that hasn't done anything? Is it going to go away after the surgery? how's Amelia going to react when she gets old enough to know what happened to her head? I can't stop myself looking at other babies heads, perfect round, big heads with enough room for the brain to grow, with all the sutures surely open. Can I have one for take away? Please? All of these questions make me selfish person? I know there's so many other cases out there much worse than Amelia's and then I get some peace because we don't have it as bad. And then I go back to my list of questions after seeing her little face, smiling, completely unaware of what's about to happen and how our lives will be changed after that. Less than a month now for her surgery. 

They call it the other side

Almost a month to go for Amelia's surgery and getting more and more excited, nervous and every time I found myself looking at her with a mix of feelings because she doesn't know what's coming and might be better this way. Life after cranio surgery is called the other side, by a large number of mums in the two Facebook support groups that I've found. How will be like for us to be on the other side? We will be exhausted that's for sure. And how is it going to be like to handle over my little girl to the doctors and nurses? They say that's the hardest part. Getting anxious thinking about all of this. Pre operation tests to be done 7/04 not long now. We'll keep waiting on this side. 

And so it began...

Cranyosinostosis. Like many of you this word didn't mean much to me until recently. Amelia our daughter has been diagnosed with Sagittal Cranyosinostosis and now this word means a lot to me and our family. Below there's links with more information about what this condition is but in summary is when one or more sutures in the head fused before time. 

http://www.craniokids.org

http://www.ccakids.com

http://privatehealthcare.club/craniosynostosis/craniosynostosis

Now, how all of this began for all of us? It was back when Amelia was born. After the first day we started to notice that her head had a funny shape, this is quite normal with new borns but in her case, all medical staff kept thinking that she was a breach baby because of the shape of her head, sky slop head one of the midwives called her. Not nice. 

We came back home and everything was normal, until we had our six weeks check up with the paediatrician, he asked us to go back at six months to monitor her head. What? Her head is perfect, what is he talking about? This may be one of the many reasons why Craniosynostosis is misdiagnosed, as parents we think our babies are perfect and friends and relatives are sometimes just too polite to bring it up even if they do notice something isn't right. 

As Amelia grew I did notice her head shape was becoming more accentuated and was far from settling as the doctors at the hospital said it will. Something wasn't right and I could sense it, so I went to my friend when in need Google and there it was, Cranyosinostosis around the corner. Many pictures and reading latter, I was convinced she had it as her head shape was identical to some of the pictures I've found. I tried to keep going thinking that the six months check up with the paediatrician will clear it, but we had a trip planed to Mexico so we were planning to take her when we'll come back at the 7 months mark.

4 months GP routine check up and vaccines. Towards the end of our consultation, the doctor kept looking at Amelia while she pretended to enter data in the computer. She didn't know how to say it and finally she did. What do you think about her head? Silence. I said that we had planned to schedule an appointment with the paediatrician after our trip. GP suggested to bring that forward before our trip to Mexico. That was the fist bell that rang to tell me that my paranoia wasn't unjustified. So I made the appointment and held my breath. 

During consultation with the paediatrician, he didn't noticed anything while touching her head, was only the head measurements that wasn't what he expected so he sent us for X-rays and ultrasound just to make sure and set off to our big trip with piece of mind. A week after doing the studies didn't hear anything from the hospital and silly me assumed everything was alright, and just kept going in my little bubble not knowing everything was about to change, and it did and in such a way! 

Sydney airport, international terminal. Bags where checked, nappy bag crowded with nappies and formula, four year old wearing comfortable clothes and with surprise toys packed for the pair. We stopped by the food court to have lunch before boarding in the next half an hour. Food was ordered and served, we sat dow and my phone rang. The hospital calling to let me know Amelia had a condition called Cranyosinostosis. They were all pretty sure that's what she had even if we haven't done a CT scan but that was already scheduled for Wednesday. It is Monday. I'm in the airport with my mum and my two kids. The bags are already in the plane. This just CAN'T be happening! After rushed decisions, I went to get our bags off the plane, talked to staff, we all headed to costumes which was empty like I never saw it before bringing an even more bizarre touch to the whole experience. Back in a taxi. Back home. The world changed and I am not ready to unpack our bags yet. 

After a McDonalds meal for dinner, kids in bed. I started the winding process of researching my daughter's condition. This has to be one of the most stressful situations that you have to go through as a parent. To have all of this avalanche of information coming towards you and still have at least a week before you can see someone that can tell you what exactly what in earth is going on with your kid. Nightmares are made out of this.

A few days later the CT scan is done, we finally saw Dr. Damian Marucci, Plastic Surgeon at Westmead Children Hospital. He confirms the diagnosis while we looked the CT scan images on his computer screen. Amelia's head looks so perfectly fused and hard as rock. I just want to run away and start crying. The operation that she needs is called Spring Assisted Cranioplasty (SAS) and Westmead Hospital has been doing it for the last nine years with great success. I will add links with pertinent information about this particular procedure but basically means they will open the fused suture and then insert a couple of springs to add tension. The springs will be removed in another surgery three to four months later. We went back home with a date for Amelia's surgery, April 22nd 2016. 

This is where we are, this is our trip so far.

http://www.craniofacialsurgery.co.nz/Spring%20_piplasty.pdf

http://link.springer.com/article/10.1007%2Fs00381-012-1850-5