Day 6 Post Op

HOME TIME!!!

After 6 nights in hospital we were discharged today!!! Our day started at 4.30am when Harper was woken by the nurses bringing a new patient into our room today (we were in a shared room that sleeps 4) as our new room was really light she thought it was daytime and time to wake up and play, after an hour of trying to get her back to sleep I gave up. Our lovely nurse came in and offered to take her while I slept a little more. 2 hours later at 7.30am I went out to get her to find her playing with the nurses and loving it, she was loving being the centre of attention. All of our nurses had been wonderful!

The plastics team came by at 8am and gave us the all clear to go home. Harper had breakfast and a bath then we packed up waited to be discharged. At 9.30am we finally left for home! We don't have a helmet and are going to see how we go without one and will readdress it on Friday.

Harper is loving being at home and getting into everything she can find. Her swelling has gone done heaps with only a little bit left, mostly around the eyelids, centre of the forehead and on her right side where there is also some bruising.

Here is Harper the day before surgery and 6 days after surgery.

Before / After

Harper's incision is looking really good, most of it is covered with her hair, you can really only see it on the sides.

**WARNING**

**** GRAPHIC****





Day 5 Post Op

Harper's swelling continued to go down today. We were also transferred to a shared room to make room for a little baby. Lucky it was only for 1 night as it was right behind the nurses desk, so at night it was still really light in the room and Harper thought it was play time. Harper spent the day playing, she is back to old self laughing, playing and being VERY cheeky. She had another bath today and her incision looks really good, as she still has a lot of hair it is covered really well and only noticeable from close up.

Day 4 Post Op

When she woke up in the morning her eyes had opened up a lot more and she could see easily. We spent the whole day keeping her entertained. She was in a great mood and was content to play.

Harper wearing her beautiful headband kindly sent to her by the Cranio Angel Network

Day 3 Post Op

Overnight Harper had become very restless and was relentless in trying to rip off her bandage. The nurse bandaged her hands, removed the morphine drip and gave her some painkillers. She went back to sleep and slept well for the rest of the night.

That morning, much to Harper's delight, her bandage was removed!!!

About 30mins later her right eye cracked open and not long after her left opened up too. From that moment on we had our old Harper back! She also had learned how to stand up!!! So I spent the whole morning chasing her around the cot trying to make sure she didn't fall and bump her head. As she didn't need the antibiotics anymore she could have her drip disconnected. After waiting and waiting for the nusrses to come do it we gave up. Harper got dresses for the first time and we headed to the playroom with the drip in tow. She loved it! The police even came for a visit while we were in there and had a little play for, when she started to crawl around it was time to go back.

After lunch the nurse removed the drip and Harper had her first bath since surgery. It was so great for her to not be connected to anything, she could just play as much as she wanted and we could take her for walks around the hospital (even to the McDonalds in the foyer).

That evening the nurses removed her central line and she was now free of everything! All she needed was Panadol every 6 hours.

Day 2 Post Op

By day 2 swelling was at it's peak, Harper was still on the morphine drip and around noon it was reduced to .5ml per hour. Her bandage was really annonying her and she kept tugging at it. In our care package from Cranio Care Bears was a gorgeous hat that was large enough to fit over her bandaged head so we put that on her to stop her from ripping it off. She also kept kicking the IV in her foot with her other foot and I noticed it was half out and the nurse removed it, she still had the central line in her groin and didn't need anymore bloodwork taken so it didn't matter.

1 Day Post Op

Overnight Harper had woken and ripped the nasal prongs off her face and kicked the cathetar out. Luckily she didn't need either of them anymore. She was still very sleepy and only woke in short bursts. By morning her eyes had completely swollen shut. Throughout the day she was staying awake for up to one hour at a time and was content to lay in her cot and play with her toys. She kept trying to poke the IV in her hand and as it was a spare anyway they removed it at the end of the day.

Surgery Day- July 19th

Harper needed to fast from 2am so I woke her up for a feed at 1.30am and put her back to bed. At 4am she woke up and wanted another feed to help her back to sleep, after 30 mins of grumbling Pete (Daddy) put her in her carseat and took her for a drive to get her back to sleep, at 5.30 they come back inside and Harper is wide awake and playing.

The grandparents arrive at 6am to look after Paxton who was still fast asleep. We leave at 6.30am, leaving plenty of time to get to the hospital for our 7.15am appointment. Unfortunately there were several accidents that morning causing traffic chaos all over the city. We called to let the hospital we would late and arrived at 7.45am.

Once at the hospital we were whisked off into a private room to talk to the anaesthesist, then taken back into a large room where Harper was given some Panadol and something to make her "drunk". The main anaesthesist and the plastics team was there to talk to us. Once the meds had started to kick in we were taken to a waiting room in the operating wing where we put on her gown and waited for her to be taken back. The anaesthesist came and spoke to us again and our surgeon came past to touch base before the surgery.

At 8.30am it was time to start. I carried her back to a small room where I laid her down on a big bed on top of a heated air matress. They put the mask over her face and she went to sleep. I said goodbye and we were led to the waiting room.

At 2.30pm, 6 hours later the surgeon called us to let us know that she was out of surgery and tha everything went perfect. He said in about 30mins we would be called back to recovery to see her. 2 hours later at 4.30pm we were finally paged to recovery. Harper was having a cuddle with one of the nurses who told us that she had been very unsettled so she sat down and held her. They passed her to me and we had a cuddle. She had a central line in her groin connected to a morphine pump and a drip, an IV in her hand, an IV in her foot and a cathetar. Her oxygen levels were a little low so they also put some nasal prongs on her. transfered her.

After about 30 minutes she was transferred up to the ward. We were given a single room painted with an Aladin theme.

Harper was getting 1ml of Morphine every hour and had an extra 1ml twice in the first day, she was also getting panadol and antibiotics. She was sleeping most of the day except for approx. 15min intervals every few hours.

We were on the other side!!!

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 :)