A post about nasal stents

I can't seem to find much information online about nasal stents and the first time I actually saw them was when they were already in H's nose post op. The hospital only gave very vague instruction too so I thought it may be useful information to have here. The reason she wears them is to help shape her nose.

They are to be worn 24/7 and I was told she will be wearing them for approximat€ely 3 months.

So here they are. Little, made of silicon and with holes so she can still breath through her nose. They come in different sizes. She wears a 2.

They are held in with adhesive tape. The surgeon initially suggested using steri strips but because she keeps pulling them out we are now using Hypafix which is stronger. I like the lines on the hypafix as they make cutting the right size and placing the holes in the right spot easy.

So she can breathe, they need holes cut in them. Quite a pain using scissors as they did in the hospital. When I told the plastics registrar that I planned on using a hole punch and he was doubtful it would work. Little does he know the treasure that can be found at the craft store.

The holes are places about a cm apart. I also pull some of the backing tape away from the adhesive and make a little snip into it before placing it back in place. This makes it much more easy to pull it off when it comes time to replace her tape.

Here we are, taped up and not at all happy about it. You can clearly see her cleft palate in this shot too.

Six of the fastest months ever

Here we are. A gorgeous yummy big girl who is looking very tired in this shot taken not long before nap time today.

What can I tell you about her?

She loves being around children and gets a thrill every morning when we go to school. While there, she can spot a staff member who is close to our family from over 15 meters away and will follow her with her eyes.

She is already waving and trying to clap.

She twice has crawled off the bed, once crawling down between us to the end, then off the side. She now sleeps in a cot.

She is highly driven. As we feared, she pulls her nasal stents out all the time and we are now waiting on a second replacement set to arrive from the hospital. Apparently most babies are ok with wearing them, but now and again they get a Houdini who thinks they are optional.

She has the most threatening "you've got to be kidding" look I have ever seen on someone so young. On a day when we have been driving more than usual, I put her in her seat only to receive that look.

She loves cuddles and snuggles right in.

I have a little song that I made up for her and she shakes her shoulders as if to dance when I sing it to her.

She is our world.

A return to routine

Before I became a mother I did not care for routine. It was probably a by product of being a shift worker for 11 years. It did not take G long to teach me that she does need and like a familiar rhythm so with all the changes our family has gone through, finding and establishing routine is what sets everyone back to a peaceful place. 

After H's surgery and everyone in the family but me being ill last week it is time to get back to what we do best. DH is back at the office, G is at school with us doing the school run. My washing is on the line and H is down for her morning nap. B is enjoying having some personal space and my undivided attention. 

Serenity now.

H looks gorgeous. The surgeons did an amazing job which is even more obvious now her sutures are removed. I must admit I find the change a little confronting after so many months of loving her with her cleft. It is lucky those cheeky eyes and blonde hair are the same. She is still not feeling 100% after her fever but she is eating up a storm and her temp has not spiked again so that is a good sign.

Did I say things were going very well?

Not long after my last post I noticed that H's temp was quite high for her. After further monitoring over the next few hours, we ended up in the hospital for a sleep over while the Drs did tests to try to work out where the infection is from. Is it the same bug that has struck her sisters and now Dad or is it an infection in relation to her surgery? We still don't know but I have been able to bring her home with the instruction that if she gets worse I am to take her to the children's hospital where a member of the plastics team can look at her.

Either way we will be back in on Monday for her sutures removal.

The hospital where we spent last night was the one where H was born. It was almost like a little homecoming with familiar paediatricians looking after H which was comforting. One was actually present at her birth. Just as lovely, when one of the nurses went down to maternity to get some breast pump parts for me she mentioned to the midwives that there was a little cleft affected girl on the ward. The midwives asked if it was H and were very excited to hear that aside from the fever she is going well. One even popped in this morning to say hello which was so nice.

So for now, we are keeping and eye on her and giving her some antibiotics. Funny, a couple of weeks ago I was concerned about maybe having to add some thickener to her breastmilk wondering what it would do to her tummy. I now realise how precious I was being and that sometimes you just have to let go of the ideals and do what you can under the circumstances presented.

Presenting

Whoops. Wrong daughter. My Jan and Marcia have been quite sick themselves. Must have picked up a bug in the hospital when they came in on Monday.

H is eating more each day, but is still frustrated by the teat we are using and her arm splints. As I write this, she is holding one of her toys at arms length and manoeuvring the tag to her mouth so she can suck. Where there's a will...

I saw that my blog buddy Amanda's cleft team have a slightly different approach to post op arm restraints. Plaster casts.  

Here is our darling. Still in b&w as she is a bit red

5 days to go.. gathering

There are some interesting new things in our home this week. From ear plugs and head wraps to protect her ears from the wet once her grommets (ear tubes) are inserted to rocking pink arm splints and fan dangled teats.  

Her splints are made with love by a CleftPALS volunteer and the association will buy them back after her two weeks of torture, but I think we should save them as a souvenir. 

Mood today- thankful

For the lovely warm wishes and messages of love and hope we have received. 

For some generous offers of help that have come our way.

That DH will be able to take time off work so our big girls can have him to care for them.

Finally that our darling is strong and healthy. She will bounce back.

6 days to go.. visiting

Pre op appointment today, and boy were we busy. Sometimes when we are at the hospital there is a ton of waiting but today it was from one thing to another. No time for knitting and only time for half of an expressing session. 

H really seemed to like the plastics registrars and the audiologist but again she was not keen on the ENT with the pointy thing going in her ear.

Now we are both exhausted and ready for bed.

7 days to go- contemplating

One week out and today I have been contemplating things big and small.

Big things-

• How will she feel to wake up with her face feeling entirely different.
• my guess is she will adapt very quickly. It will be us who need a little more time.
• What effect will all of this have on her sisters
• they will really miss us and will be concerned if they see her in pain. As for her appearance, they completely love her and take her as she is, no worries there.
• Will anything go wrong
• Probably not. She is in great hands.

Not so big things-

• How much milk should I take in just in case my supply drops significantly while we are in there
• If I don't take enough, I can always ask for DH or someone to bring some in. 
• Questions to ask at our pre op appointment tomorrow
• I feel really well informed about the surgery and admission process from the information already supplied. Really just housekeeping questions about life on the ward, and maybe a look tomorrow to get a feel for the lay of the land.
• What I need to buy to take in
• How to finish her little cardi. Because she will have a sore mouth, we won't want to be putting clothes over her head so I have knit a few things to wear. Just need to work out the finishing touches
• What do I need to organise so things run smoothly here while we are away

Great thing-

• NO MORE LIP TAPING!!!!! 
• I am trying for now not to think of what she will do with nasal stents if they are fitted. One thing at a time Lisa

All in all, as the day edges closer, I feel somewhat organised and ready for the next chapter. Before one of H's appointments with her orthodontist I met a lovely couple with a sweet 4 year old daughter who has the same kind of cleft as our darling. They said that at the time her lip repair seemed like a massive deal but now it is just a distant memory. I expect that before I know it, I will be saying the very same thing to someone else.

Waking up from nap time

 

 She's just too yummy for words. I am trying to take as many photos as I can pre op. I will miss this gorgeous face. It is already dramatically different to the way she was born because of her plate and taping, but being a gradual change it was easy to cope with.

Ten days time brings a big change and a new beginning.  Knowing her, she will take the challenge of recovery beautifully while exercising her rights to pull off her arm splints and nasal stents while she is at it.

The tide is high

This king tide and the blustery winds have come at a big time for us and I can empathise everything getting blown about all over the place. 

H now has a surgery date, two weeks from today. It will be the first of many medical procedures she will have between now and early adulthood with an uncomfortable recovery which includes  he pain of the procedure, drinking from a hard plastic pointy teat, no sucking her fingers and wearing arm splints. for two weeks.

I have finally pulled out my needles and am working on finally completing this for her to wear post op when we won't want to be putting things over her head in cast they knock her sore little mouth.

Another year, another new home

Here we go, moving again. In her four years sweet B is now up to six homes in three different cities across two different continents. My husband and I had the very opposite in our upbringings. His Mum only eighteen months ago sold after fifty years and my Dad still lives in my childhood home. My hope for the next 5 years is for us to not move as often and for all three girls to have the opportunity to stay at the one (fantastic) primary school .

There is so much to do, but tomorrow I would love to take a little time alone with my yarn to become reacquainted after all this time.

Another milestone today. Darling H is four months old. I can't even put into words how full of love I am for our little poppet. I can't think about her without breaking into a smile. She is not feeling so jolly today as she has her first ear infection. Poor little sweety. I am optimistic that she will be better in no time powered by mother's milk.

Oh and she has started solids. Early? very. Guided by me? NO! She has been eating the steri strips that hold her orthodontic plate in place. The whiskers from my last post. I was beside myself watching her pull them off just as quickly as I put them on. The above image was one of my failed attempts to foil her- train tracks that took me longer to put on than her to take off.  Thankfully one of the orthodontists at the RCH came up with the great suggestion to put some of the duoderm base tape over the top of the steri strips. No more surprises at nappy change time. She can still take her plate out, but that is a whole different ball game. Before we know it, this will be a thing of the past. Time really does fly.