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.