Harper's head- pre surgery (10.5 months)

Harper is having her surgery tomorrow so i thought I would take some pictures of her head to compare with after surgery.

Here is a comparison from 6 weeks old


Answers

Back in November I had a list of questions that we had regarding Harper's treatment plan and surgery, I thought I would post the answers: Is only her Metopic suture closed? Yes, she only has Metopic Craniosynostosis

Do you consider her case mild/moderate/severe? Originally we were told moderate/severe but she is now classed as severe metopic

Will you do a CT to confirm the diagnosis? We had a CT scan done back in November 2010

Do we need to see a Geneticist? An Ophthalmologist? No geneticist, we saw an ophthalmologist who checks for ICP (Intracranial pressure)

What is the chance of this happening to another sibling? Unknown

Will she have traditional (CVR/FOA) or Endoscopic surgery? CVR/FOA (this is all our hospital offers)

Will she have to do helmet therapy? No, but she may need a protective helmet if she is learning to walk during recovery

How soon will the surgery be done? We first saw the team in November and surgery is happening in July 2011 when Harper is almost 11 months old

What is the chance she will have to have a blood transfusion? Very high, she only has a small blood volume and the area they operate on is likely to bleed alot

Do you use Procrit injections? No

Can we donate blood for a direct transfusion? No

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

How many appointments will we have between now and the surgery? We ended up having: CT scan Neurosurgeon Ophthalmologist CFPS follow up Pre Op appointment Neuropsychologist

How many follow up appointments after surgery? at 4/6 weeks, 6 months (I think) then every 12 months

What are the possible complications from surgery? Brain damage? A lot of complications, as discussed with the neurosurgeon, but all with a low chance of occurring

What is the chance of a second surgery being needed? Likely but only for cosmetic reasons

What are the possible risks if we choose not to do the surgery? We may find that Harper will have trouble talking and learning, or she may be fine. At this stage we are already seeing developmental delays with Harper

Will she have any problems with her eyes? No

Will she need blood work done prior to surgery? She had bloods done in November and will have more the day before surgery

Is there a time she should not feed prior to surgery? She needs to fast from 2.30am

How long does the surgery take? Approx. 6 hours

How long is the hospital stay? Up to 6 nights

Will she be in intensive care? No

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

How soon can I breastfeed after surgery? whenever she is ready

Are other visitors allowed? Yes, visiting hours are 8am-12noon and 2pm-7.30pm

Will you shave her hair? Only the strip for the incision

Where exactly will the incision be? ear to ear

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

Will you use stiches or staples, are they dissolvable? dissolvable sutures

What type of anaesthesia will be used? Gas at first

Is the brain ever touched during surgery? No

How long will she have bandages on her head? A few days

How long will we need to be incredibly cautious with her head? 6 weeks

Will we have to change her sleeping arrangements? Pillows etc. No

Surgery date and Neuropsychologist evaluation

Well for those of you that don't know Harper will be having her surgery on Tuesday the 19th of July.

We go in around 7.30am from there I will take her back while they sedate her (gas). After that the anesthesist will spend about 1.5 hours getting her ready for the surgery, then the surgery itself will take around 4 hours. In this time they will reshape Harper's forhead and orbital (eyebrow) bone. When the surgeons are finished the anesthesist spends another 30mins with her (lines etc.) then she is transferred to her room. So all up she will be in surgery for around 6 hours.

After surgery her head will be bandaged (she will have an ear to ear zig zig incision), but she won't have any drains in her head. She will have lines for fluids and pain medication. We will be in hospital for around 5-6 nights and should be coming home on or before the following Monday. I will be staying with her the whole time (there is a foldout armchair in her room). After surgery our biggest concern is swelling, it used to be that almost all babies following this procedure had their eyes swell shut for a few days. It just breaks my heart to think of my little girl going through such a major surgery and then not being able to see where she is or what is happening to her :( Our surgeons are using new injections now that greatly minimise the swelling and sometimes the eyes do not swell shut, but because they are working so close to her eyes (orbital bones) I am not hopefull. We have to be careful with her head for 6 weeks following her surgery and after that it is pretty much business as usual.

I am really not doing to well in the lead up to the surgery, even though I have know for months that it was coming, the day I recieved the date I broke down in tears. But, I have to be strong for Harper, she is going to need me now more than ever. But I'm a Mum, we worry, that's our job!

On Wednesday we took Harper for a neuropsycholgy evaluation and I recieved the results today. It's not great news, as I expect she is a little delayed. The neuropsychologist is almost certain that it is caused by her cranio and that she should catch up after the surgery. Luckily Harper is scheduled for surgey in 2 1/2 weeks anyway otherwise they would be looking at bringing her surgery forward. But as long as she is still progressing and not going backwards they aren't too concerned.

She is delayed in language, understanding and slightly delayed in motor skills. I was certain she was behind in her language but everyone else I spoke to told me it was normal (10 months and only babbles the one the sylable, dadadada). She is also small for age which I think fools people into thinking she is on target, she looks about 7 months and is probably at the 7 month level of development.

Luckily she is only little and she hasn't fallen too far behind. Our Neuropsychologist said that sometimes it is like a lightbulb switches on after surgery and the babies improve remarkably. That's what I'm hoping for!

Here is Harper at 10 months old, my little princess :)

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.