Harper's Head- 4 months

2011 is going to be a busy year for us Cranio wise, we already have 3 upcoming appointments, in Febuary we meet with the Opthamologist and the Neurosurgeon. Harper will also have a blood workup done at one of these appointments. We are still waiting on an appointment for the Neuorologist, but that will be closer to her surgery. Then in March we have a follow up appointment with the Craniofacial Plastic Surgeon hopefully by then we will have a better idea of a surgery date, at the moment all we know is between 8 - 12 months so it could be anywhere from May - September. They told us that we would have firm date only 3 weeks before surgery.

Here are some new pictures of Harper's head taken at 4 months:

In this picture you can see the pinching at Harper's temples which causes indentation above her eyebrows.

Harper's first Christmas

Just before Christmas Harper turned 4 months old. We had her visit with the health nurse and she growing well, she is smaller than average but is nice and healthy! This year was Harper's first Christmas and I think she enjoyed herself, she definately liked her presents, especially her activity centre from Santa.

In her Christmas skirt:

 All tuckered out Christmas morning:



Harper's Head- 3 months

Harper turned 3 months old on Tuesday, she is growing up so fast.

We took her for her CT today, the plan was to feed her, get her to go to sleep and then have her scanned. So we got there about 45mins before her appointment and I had just finished feeding her when they called us through 15 minutes early, I don't think I have ever been seen early before! So we went in, I wrapped her up and gave her a cuddle, she was really calm so we decided to scan her anyway. They laid her head onto a "beanbag" it was plastic mat filled with beans then they moulded the bag around her head and vacuumed all the air out so it would keep her head still, she didn't mind at all, she actually looked quite comfy. The CT machine looks like a giant donut and the table passes in and out of the hole in the centre, all up the scan took less than 1 minute and we were able to stand with her while she was scanned. We were in and out within 10 minutes.

Next we go see the neurosurgeon who will be operating with the craniofacial surgeon, we have an appointment the first week of February to meet with him. We are still waiting on appointments with the opthamologist (eye doctor) and the neurologist who we will see closer to surgery. So for now we just get to enjoy Christmas!

Here are some pics of Harper at 3 months old:

We had our appointment today

So we finally had the appointment that we have been waiting for and it is confirmed that Harper will need to have surgery. We go back next week for her to have a CT scan and are waiting for appointments for her to see the neurosurgeon, neurologist and opthamologist, she will also need some blood work done soon and then again before surgery. They classified her case as Moderate/Severe and she will be having surgery sometime between 9-12 months so around May - August next year, we wont know the exact date until 3 weeks before.

She will be having the CVR/FOA surgery (cranial vault remodelling with frontal orbital advancement) the surgery will take around 6 hours to complete followed with a 1 week stay in the hospital.

CVR-During the surgery they take off the front portion of the skull. The surgeon then cuts and manipulates the skull so that it is placed back on in such a way that the brain has room to grow and looks better.

FOA- This is done to help correct the brow line which is more of a "V" shape. The surgeon removes the brow bone and makes adjustments so that it is the correct size to protect the eyeballs in the orbital socket. Also, it provides a more accurate "look" for the Harper, the way she was supposed to look.

We meet with the CFPS on Friday

Well the wait to meet our surgeon is nearly over and I was going through our list of questions for him, (far too many) might have to try cut down that list! I'm sure I'll think up some new ones while I'm there and hopefully most will be answered without me having to ask.

Finally we will have some answers, sure they might be followed with more questions but at least we are getting somewhere. It's just hard not knowing what will happen to your baby!

So here they are:

Is only her Metopic suture closed?

Do you consider her case mild/moderate/severe?

Will you do a CT to confirm the diagnosis?

Do we need to see a Geneticist? An Ophthalmologist?

What is the chance of this happening to another sibling?

Will she have traditional (CVR/FOA) or Endoscopic surgery?

Will she have to do helmet therapy?

How soon will the surgery be done?

What is the chance she will have to have a blood transfusion?

Do you use Procrit injections to reduce the need for a blood transfusion?

Can we donate blood for a direct transfusion?

Is it true if we donate blood we cannot donate an organ in the future?

How many appointments will we have between now and the surgery?

How many follow up appointments after surgery?

What are the possible complications from surgery? Brain damage?

What is the chance of a second surgery being needed?

What are the possible risks if we choose not to do the surgery?

Will she have any problems with her eyes?

Will she need blood work done prior to surgery?

Is there a time she should not feed prior to surgery?

How long does the surgery take?

How long is the hospital stay?

Will she be in intensive care?

Harper is exclusively breastfed. Will I be able to stay with her in ICU?

How soon can I breastfeed after surgery?

Are other visitors allowed?

What kind of pain medication will be used?

Will you shave her hair?

Where exactly will the incision be?

Will it be a straight line or a zig-zag?

Will you use stiches or staples, are they dissolvable?

If the stitches are dissolvable, how long until they dissolve?

What type of anesthesia will be used?

Is the brain ever touched during surgery?

How long will she have bandages on her head?

How badly will the swelling be and how long will it last?

Will she have black eyes from the swelling afterwards?

What type of pain management will she have?

What kind of medicine will she need to take once she’s home?

How long will she be sore or need medicine once she’s home

How long will we need to be incredibly cautious with her head?

Can I pull clothes over her head? If not, how long should I wait?

How do we care for the incision?

When can we wash her hair?

Will we have to change her sleeping arrangements? Pillows etc.

Rotating CT scan

Harper hasn't yet had a CT scan and may not need one as some doctors can diagnose but sight and feel but I came across a website that has a rotating CT scan showing metopic cranio. It is worth a look if you are interested. In a normal skull the forehead is made up of 2 separate plates, in the CT you can see that those 2 plates have prematurely fused creating a sharp ridge.

My new home...

Well not as exciting as it sounds, but I have a feeling I have just found my new home :

The Royal Children's Hospital

We had our first trip to the Children's with Paxton last week, although it wasn't his first time at a hospital. I get the feeling this boy will be seeing the inside of this place a fair bit in the coming years.

This time it was to see the dental department, last Thursday Paxton was riding his trike when he somehow managed to flip it. He ended up with with a cut lip, grazed chin and his right front tooth pushed about 50% back up into his gum. This is in addition to his already chipped left front tooth! I can't praise the dental department enough, they were so good with him, even though he really didn't want them poking around in his mouth. We have to go back in a few days to see if the tooth is savable or if he needs it taken out (under anesthetic).

So add this to Harper's appointment and we will be visiting the hospital 3 times in 2 weeks! Like I said "My new home"

This is the best pic we could get, busy, busy boy!

Harper's 2 month check up

Last week Harper had her 2 month check up with the health nurse. She now weighs 4.5kg (up from 3.86kg at birth), is 55cm (up from 52.5cm) and her head circumference is now 38cm (up from 35.8cm). She is doing everything she should be including lots of smiles and like any typical girl she loves to chat!

A lot of people ask me if her head is changing but as it has only grown 2cm it still looks almost the same as it did when she was born. Over the next 2 months baby's heads typically grow another 3cm so we should get an idea of how head shape will progress. Unfortunately crainiosynostosis can only be corrected by surgery so her head wont round out but will continue to grow in a triangular shape.

We still have 2 weeks until our appointment with the craniofacial surgeon so we wont know anymore until then.

Harper's Head- 2 months

Updated photos of Harper's head taken at 2 months old:

Look at that crazy hair!

10 week 'till Christmas

How crazy is that?!



I have been so busy with Harper I haven't even thought about it, right now it feels like I live my life in 3 hour increments (what do I have time for before her next feed?) 10 weeks is the farthest thing from my mind. But I was at Big W on Friday and they are already set up for Christmas!

Christmas takes along time to organise as I'm sure you all agree. So I figured I should start now. After 10mins I had already come up with about 101 ideas of what to get Paxton, But what do you buy a 4month old baby??? Other than clothes I only have 1 idea so far. Paxton was 11months at his first Christmas so he was due for new toys but Harper is only 7weeks old and we bought her a bunch of stuff before she was born.

Any ideas???

Just to add some cuteness to the post, here is Harper aged 7weeks:

Appointments Galore

Over the last 2 weeks we have had 8 appointments, it's crazy, before Harper was born I thought the weekly visits to the hospital was enough.

Most of them were the standard health nurse and doctors appointment that come along with a new baby, but last week we also had 2 sick kiddos in our house. Paxton had an ear infection, luckily he is old enough to tell us now and he actually likes the medicine the doctor gave him, I think he will be more than happy to go back to doctors next time, he laughed when the doctor looked in his ears then got a handful of jellybeans to take home, he was a happy boy after that.

Harper is also sick, she has her first cold, poor little thing. She has a stuffy nose and struggles to breathe at times and she HATES the nasal aspirator! But she is handling it very well, we still get our smiles and she loves to chat, lol.

2 weeks ago I had to take both of the kids to hospital with me for 3 hours so I could get tested again for Diabetes, they were both so good, especially Paxton, I was dreading taking him with me but he was really well behaved, and the hospital didn't call me so that means no more diabetes for me, YAY!

As for Harper's head, no new news yet, we are still waiting for our appointment mid November with the craniofacial surgeon. I am going to take some more photos next week when she is 2 months old to take in with me so they can compare them and see how her head is changing.

Well we have no more appointments for another week and a half so for now we can just relax at home :)

Appointment with the craniofacial surgeon

We have an appointment to see Dr Holmes, the craniofacial surgeon, at the Royal Children's Hospital. BUT... It is still 5 weeks away! I know it doesn't seem that long in scheme of things, but it feels like forever. It is hard not knowing what is going to happen next, whether Harper will need surgery, if so what kind and when. Luckily I found a forum dedicated to kids with cranio called Cranio Kids, there are plenty of other mums whose children have gone through the same thing and they are more than willing to share their knowledge on cranio and give out helpful advice. It's because of them I have an idea of what to expect.

* First Harper will probably need a CT scan.

* From there the decision will be made if she needs surgery.

* Best case scenario is that her Trigon is mild and she doesn't need surgery at all. In this case we would have to return to the hospital every few months so they could monitor her head and make sure it doesn't get any worse.

* If she does need surgery (I think she will) decide on which surgery:

Most hospitals only do cranial vault remodelling or CVR (a large "open" surgery which requires an incision from ear to ear in which they fully reshape the forhead).

Some hospitals also offer an endoscpoic procedure (a smaller incision is made on the scalp and a strip of bone is removed from the middle of the skull down to the top of the nose, then a helmet is used to reshape the head) I'm not sure if our hospital even offers the endoscopic surgery.

* Timeline- If Harper needs the endoscopic surgery she will need it done before she is 4 months old and would then have a moulding helmet for 3-6 months after. If she needs the CVR they normally do the surgery around 8-9 months old. She is 7 weeks old now.

Harper's Head- 6 weeks

Here are some pictures of Harper's head shape that were taken last week when she was 6 weeks old:

In this pic you can easily see the ridge running from her nose up to the centre of her forehead. This is called a Metopic Ridge

This pic shows how her head shape is triangular (I call it teardrop shaped)

This is the Trigonocephaly

What is Metopic Synostosis (Trigonocephaly)?

The metopic suture begins at the nose and continues to the top of the skull, dividing the frontal bone into two halves.

The metopic suture is usually open at birth and fusion normally occurs in the first 12 months of life. With premature fusion of the metopic suture skull growth is restricted and the forehead will have a triangular shape and the eyes may appear closer together. This occurs somewhere between one in every 2,500 - 15,000 live births with a male to female ratio of 3:1.

The deformity can vary from mild to severe. There is usually a prominent mid-frontal ridge (pointed forehead) down the forehead that can be seen or felt and the eyebrows may appear "pinched" on either side. The eyes are usually spaced closer to each other than normal, causing a definite recognizable deformity of the forehead and eyes. When viewed from above the forehead has a triangular shape.

The only treatment for this condition is surgery on the skull. In general, a single operation is all that is necessary to treat this condition and the outcome is usually excellent.

Harper Lily

On August 23rd 2010 our second precious baby was born, a little girl we named Harper Lily. After her birth I noticed that her head shape was a bit different, she seemed to have a pointy forehead. Harper was born prosterior (facing up) so the midwives and doctors put it down to that. They all said it will round out soon enough. She is now 6 weeks old and not only has it not gone away but it has become pronounced.
I did some research online and came across Metopic Craniosynostosis and Trigoncephaly. It was pretty scary as it described Harper's head perfectly and most other babies with this condition go on to have major skull surgery before their first birthday.
Earlier this week I took her to see our GP armed with some information and our doctor agreed that it looked like Metopic Craniosynostosis and sent off a referal to the craniofacial department at the Royal Children's Hospital here in Melbourne. Right now we are waiting for an appointment, it is a bit nerve racking just waiting, not knowing what is going to happen. Hopefully they see us soon.