Laryngomalatia · Special Needs

Supraglottoplasty – Surgery Day

After we went to the hospital the next day his surgery got cancelled as they had no surgical beds in the PICU and as its his airway thats the issue this was a necessity so we went the following week with the promise that it would not be cancelled they had a guaranteed bed for him. Being so young he was first cab of the rank which made things easier as he was starting to get a little hungry.

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The above pic is of my gorgeous boy before his surgery. I think he had been crying a bit as he was hungry hence the red cheeks. Daddy was with us and we took turns trying to calm him. We were taken into pre surgery where he was weighed and measured and had his little tiny identification bands on, he also had his observations taken. IMG_6394

We managed to get him to sleep for a bit before he was taken for surgery. Mummy got dressed up in her clothes because I wanted to be the one when he went to sleep.IMG_6397

In Anaesthesia he was wrapped nice and tight and given some gas to make him go to sleep. He was pretty good and did not fight it too much I gave him a kiss and told him I would see him later. We were then shown to the ICU and told they would come and get us from the parents room so we went and got some lunch and sat and waited. I was so nervous as I did not know what to expect three hours later they came and got us they told us they were having troubles trying to settle him as he was in a large amount of pain so it took them a while before they could come and get us.IMG_6398

This is the pic of what we walked into an ICU room with all these monitors and our little man with a breathing tube down his nose monitors attached to his chest, a canal in his foot.IMG_6406

His nurse introduced herself to us and we were told what was going on with him how the surgery went and how he is going now. IMG_6407

I have to admit for me the scariest thing was seeing he pain in his eyes he looked terrified and as a mum I could not do anything to help him which broke my heart. His face was so swollen as a mum you don’t want to see anyone in pain or like this.

 

I thought id try and explain what Laryngomalatia is and in the best simple words I can describe it is floppy tissue in the larynx which causes the airway to be obstructed so essentially an upper airway defect and the supraglottoplasty is the surgery that is performed to try and correct it they try to trim some of the tissue but not too much so as it damages his vocal cords. Not everyone who has laryngomalatia needs surgery it depends on how bad the laryngomalatia is that determines surgery. Leo had the worst type Severe Laryngomalatia.IMG_6408

I was told that I could touch him which of course I did and I proceed to stroke his head and had my hand on his chest to try and comfort him in a way that I could as he could not be picked up. They had him wrapped up like he was in a little nest.IMG_6419

Pregnancy

The Feeling of Guilt. Pre Natal Depression, Post Natal Depression, Gender Disappointment

I wrote this post two years ago but I did not have the guts to post it I think that I’m in a position now to finally post my feelings about it so all the below is how I felt two years ago. Has it changed now well I love him to bits he is such a gorgeous boy. But it will never stop the way I felt the way I feel now about his additional needs that have been diagnosed. Last year Leo was diagnosed with autism along with his other needs it makes life super hard and this is exactly what I did not want to go through and feel so alone now going through it.

Im going to share something that is really hard for me to share but Im really struggling at the moment and due to lack of $ I cant afford therapy to help me so I am hoping that this helps me.

We never intended to find out the sex of our baby I really wanted a girl as our little boy has special needs and I did not feel that I could emotionally cope with another child financially or emotionally with special needs its so mentally and emotionally draining not to mention the funds it costs to provide support for the therapies needed to help.

I never thought in the slightest I would get a boy I always thought id get a girl I think that I thought God would not make it harder for us than it already is he would give us a healthy baby and we would continue to give Ethan all the support he needed to move along in the world.

My world fell apart at our 20 weeks scan we had not decided to find out the sex of our baby but got the Dr to write the sex down and it was placed in a silver envelope and given to Jason for if we decided to find out later.

I went home from the scan and watched the DVD like every mum does over and over again it was then I noticed what I thought was a penis I sent Jason a message saying I know its a boy I can’t cope with another boy it will be like our little boy and need additional help I can’t do that again I am not strong enough to have another boy. He messaged me back saying you don’t know that you don’t know what it will be and regardless of what the baby is we will love it no matter what and if it does have special needs we have done it before and are still doing it and will do it again.

I broke down I sobbed and sobbed and sobbed I could not cope with another boy I wanted a healthy child. You see because our son has a condition we were given percentages of the chances this baby would have it if it were a boy or a girl and lets say that the girls results were much less for a girl. I told hubby I no longer wanted the baby if it were a boy I could not cope I wanted a girl. I told him I did not want to live anymore if its a boy. We had not told many people we were pregnant so if I died no one would know I had wanted to get rid of our baby too.

He sprung into action and rang my psychologist who had a vacant appointment he rang my OB to tell him what was going on and I would be missing my appointment that afternoon he came and got me and took me to the psychologist my face was so swollen I could not talk I could not let the words of what I wanted to do to an innocent baby out it was unthinkable who could possibly want to do something so terrible to a baby because of its sex and we would not know for sure until he was older if he would have the same issues. He could very well be healthy. But I was not in the right mind to think that. I shut down I built up walls and up until that day I had been really enjoying my pregnancy now I did not want what was a miracle for us.

I was in the darkest of darkest places and while I continued to go to my weekly appointments I did everything I could to hide the pregnancy from everyone which was pretty easy I was not showing which helped. I felt guilty when I felt him roll around that I did not want him I wanted to want him but I just wanted a girl although I love my other boy I did not want to go through it again. I had desperately wanted a baby for so long and I had been given that gift how could I feel this way. He was mine something I had wanted for so long and was lucky enough to have the opportunity to get to experience being a mum again but I just stopped enjoying what was meant to be a perfect pregnancy.

I went to therapy over and over again and I was still in denial that I was having a boy when he came out I remember telling the surgical staff I did not know what I was having. When he came out it was even harder to bond being born so early you don’t get that time alone its all spent looking into a box and him hooked up to things keeping him alive.

Laryngomalatia · Uncategorized

Caring for a Child with additional needs

So I guess due to my PND I have not been very open about our miracle boy Leo. While born premature after being discharged everything seam to go smooth he was meeting milestones and slowly putting on weight. The one thing that was wrong which I had never experienced before was reflux this was new to me and my heart broke with his constant screaming in pain and projectile vomiting. He was also making this strange noise while feeding and I felt like something was wrong.

He was put on reflux medications but it did not seam to improve. Laying on his back in bed I would wake to him gurgling his vomit and rush up to turn him on his side to clear his airway. One thing we had was a sound and movement monitor on his bassinet but never did I think that it would ever go off you know its only there for reassurance.

Until one night it went off I got up and his lips were blue straight away I picked him up and he started to breath. He use to go blue when he was feeding as suck swallow breath is quite difficult for premature babies. IMG_3459

This was something I bought up with the Maternal Child Health nurse and was told that it was probably just a fault. So reassured I kept on with live loving Leo.  Until it happened again and then again and then one day I had him in a Stokke Newborn seat next to me and I noticed him stop breathing go blue around his lips and grey. I quickly undid the belt and picked him up and he started breathing again.IMG_3494

Concerned that it had now happened more than once and I had noticed it I called our Paeditritian we went into see her I mentioned the gasping for air the projectile vomiting still even with the reflux medication and the noise he made while feeding which I had a video of so showed it to her right away she called the ENT for an urgent referral.IMG_3597IMG_4603

We went to see the ENT not long after and the Dr did a scope said it looks like he has a floppy larynx and he organised for RCH at home to do an Oximetry test. IMG_5568

While this was done urgent for some reason even though the nurse said the results would be done urgently as they had it set not to go off unless his oxygen saturations went below 60 SPO2 I told the nurse I was up most of the night as the alarm went off all the time to check him and turn off the alarm. We did not receive the results until we got an urgent call on October 3rd.IMG_5574IMG_5576IMG_5578IMG_5580IMG_5582

It was then we were told that our little man had a serious problem that he was dropping his SPO2 levels so low we are lucky he is not a SIDS baby. I thank the lord that we purchased the Anglecare sound and movement monitor if we had not had this he would not be with us today.

We were told that he has a rare condition called Laryngomalatia and that he needs an urgent operation the next day that we needed to come into the hospital to sign the forms for the surgery the next day we were called by the intake nurse and told what we needed to do to prepare Leo for surgery and asked to come in at 7am. The ENT told me to google SUPRAGLOTTOPLASTY which I did thats the operation that he was going to have.

I can’t believe that we were about to go through this we had to get my brother to fly in to look after our other two kids and get them to school hubby had to get time off work it all happened so fast it was like a tornado. We were told that he would need to be in ICU after the surgery which I was quite scared about so we barley slept that night.

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Crochet · Uncategorized

Pastel Rainbows Everywhere

So I saw this made by a lady on a Facebook group her name was Wendy and I absolutely loved the colours and pattern so I thought id give it a go which I did.

Its called Beautiful Shells and is available as a free download on Ravelry.

And the colours are just Devine and I purchased them From LoveKnitting

The colours I used are

Soft peach 1240
Apricot 1026
Lemon 1020
Spring green 1316
Sherbet 1034
Cloud blue 1019
Wisteria 1432
Clematis 1390
Candy floss 1130
Fondant 1241
Cream 1005

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I just love it its just so eye capturing and makes me really wish I had a girl.

 

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I also for the first time attempted the Starburst 12 point star pattern as I thought it would also go well with the same colours however I did not use cream I just went with the rest of the colours. And it turned out amazing its around 115-119 cm point to point.

I used another free pattern Rainbow Ripple Blanket.

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At one stage I stopped counting and accidentally added a few stitches and had to pull it apart which was frustrating.

But eventually I finished and  it again is just so Beautiful. I have decided to make a few smaller ones for this years donation to the Special Care nursery for Leo’s 3rd Birthday Donation. This one is available for sale in my etsy store. CROCHETOVERARAINBOW

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Crochet · Uncategorized

Persian Tile Throw

After a friend completed Janine Crow’s Persian Tile Blanket I decided it was maybe time for me to give it a go so after getting the pattern I headed to The Unwind Cafe to choose some Bendigo Woollen Mills Luxury 8 Ply Yarn I did not want to go with the traditional colours like Janine has on her website. I wanted completely different to what everyone else has done. So I chose these beautiful colours.

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And while the crocheting of the hexagons did not take long to do they did sit there for quite a while as I was thinking about joining them and delaying doing it. img_2030

I did change the boarder as I thought it needed a bit more than what it had and I have to say I do like it.img_2082img_2083

The colours from Bendigo Woollen Mills luxury Yarn

348 Cerise

344 Sunflower

367 Purple Storm

349 African Violet

332 Lake

341 Lavender

312 Frostimg_2084img_2087-2

I am so surprised how well it actually turned out its just beautiful and one that I have actually kept.

Uncategorized

Rainbows

I have been super busy making baby blankets around here for friends and family  the first one is just granny stitch in the colours of the rainbow for our beautiful photographer the rainbow has meaning after a loss a baby is called a rainbow baby so I knew as soon as she said she was pregnant I had to do something bright and colourful.

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Its just stunning and ts just stunning and the colours all blend so beautiful together and this little girl is due I. September I have made it out of bBemdigo  woollen mills cotton for the summer months and I can’t wait to give it to her soon.

 

The second is for a little girl who we all thought was going to be a boy her mummy requested rainbow colours like another one I did so I adapted it a little this is by far my favourite pattern to do its so gorgeous and I decided to finish it off with a lacy boarder which turned out way better than I expected.

 

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Uncategorized

Very Hungry Caterpillar 2nd Birthday Party

Our little man turned two this April and while we did not have a huge party like we did for his first birthday we did have a small get together with family and close friends.

Last minute minute I decided that it was going to be Hungry Caterpillar theme.

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It started with a quick Pinterest search and board to get some Ideas decorations and food which turns out really easy with print offs I found and only required me purchasing what the Very Hungry Caterpillar ate which I then assembled into a plate. How easy can a birthday  party get when all you need to do is cut fruit?image

 

I purchased the napkins and plates from IKEA and they were a bargain on sale in the reduced section 49cents . I purchased some fabric from Spotlight and made some little crown hats for the kids to wear and keep for dress- ups. I also made the bunting which was really easy I just googled how to make bunting and followed a youtube video.image

 

I hand made the Hungry caterpillar with Fondant and Gumpaste. And a couple of colours of food colouring and just tie to shape it like a caterpillar on the book. Warning if you do this I highly recommend using gloves otherwise you will end up like me with green hands.

 

The cake was in no way perfect I had ran out of time to put it together I made the butter cream in my Thermomix TM5 using the recipe chip but It did not have enough icing so I added a heap more until I was happy it tasted like butter cream and was beautiful and whipped. For those in AUS who want to know how to get white butter cream use Lurpark Butter. The cake as as easy as adding colouring to equal quantities of the batter. I quickly slapped it together the night before and popped it in the fridge to set.

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One of the other things I did for the kids was make some play dough this was done in the Thermomix and my daughter added the food colouring to some read and green and some eyes are pipe cleaners for ears I was so grateful for her help I would have forgotten about it and not had time.

Overall he had a ball.