Peabrain

They have gone...the in-laws have gone! phew! They are lovely and all and I really shouldn't deny them their time with Max and Doudou but gosh it was just too much. Looking after them and Doudou and Max. I have been just so exhausted and haven't been able to think straight. Max needs more and more care these days, he needs help getting dressed and putting his shoes on etc. I organise and fill his pill box now because he just can't think straight when he is on all those drugs. After seeing the palliative care Dr on Thursday he has upped his pain meds which zonks him out even more. He decided they will keep the radiotherapy up his sleeve for now and see if he can manage the pain better on the drugs. Oh we got the appointment day wrong, his appointment was meant to be on the Wednesday and not Thursday. I obviously didn't etch that date deep enough into my little brain amongst everything else that has been happening. What a peabrain and I don't even have heavy duty pain drugs as my excuse. Anyway we were lucky he could get to see another Dr.

Sunday was the first day in a long time we had nothing on, no Dr's appointments, no nurses home visits, no psychologist home visits, no lunch dates, no dinner dates, no sight seeing, no one dropping things off, no one popping over. It was just the 3 of us at home, our little family. We all stayed in our pjs all day, it was perfect!

Now all the main events are over with I need to focus on myself a little. Since giving birth I have had problems with my girly bits well the plumbing I wont go into detail just yet but I am going to see my GP tomorrow to see what the story is.

We are going away in a couple of weeks. WMRF have offered us accommodation in a holiday house up the coast for a week. How lovely is that! It is a week so the 3 of us will go up on our own for a couple of days and we have extended it to my my sister her hubby and my Mum and Dad to come up for the rest of the week. So we will have full time baby sitters....hahaha Nah just kidding but I am hoping that Max and I will get some couple time and my Mum and sister can enjoy Doudou time. I am sure that will be no problem. I can' wait, I soooo need a holiday !

A Beautiful Day

Doudous Christening was a huge success yesterday, it was a beautiful special day. He was just amazing he gave every one lots of smiles and he lapped up all the attention loving every cuddle and kiss....unlike the day before where he was screaming in pain. I can't work out what it is whether it is his silent reflux or tummy pain but I anticipated a nightmare of a day if it was going to be like that. But we were truly blessed with a little angel there was no screaming and no stress just lots of smiles for all. He looked gorgeous in his little Christening outfit, his Godparents spoiled him rotten and the rest of the family did too. It was big day and we are all recovering today.


Max's mother and stepfather are really high maintenance. They expect to be served upon all the time even to get a glass of water. It has been a very tiring couple of weeks, I have discovered some patience I don't think I had before. It takes so long trying to get three disabled grown ups and a baby out of the car never mind getting to any destination...argh! They leave on the weekend and even Max felt bad saying so but he is looking forward to them leaving too so we can have some family time. Max was sick the weeks leading up to their arrival and finally he is feeling a little better and we can't enjoy our precious time together. The morning after I wrote the post that Max had stopped the Dexamethazone and his nausea was at bay he had his head in the toilet bowl again. So he has commenced his Dex cycle again, he will be seeing the palliative Dr on Thursday and will look into possibly getting some more radio done as he is still in a lot pain.

TinTin

Doudou has many names but one that he has been given since he was born by strangers and friends and family is TinTin. Can you you see the resemblance ?? He has the biggest cowlick at the front of his head, he is going to hate it I am sure when he gets older...but for now we think it's pretty darn cute. Max and I don't mind because we are both huge fans of TinTin.

Can you tell he loves the camera ?
Actually he loves his Daddy who is usually behind the camera.

Another post in points.

- I am very tired.

- The Christening plans are getting there.
Godparents chosen √ (we have asked my sisters children, my nephew and niece to be Doudous Godparents, they are very excited!)
Church booked √
Cake ordered √
Godparents Gifts purchased √
Christening outfit ordered √
Christening Candle purchased√
Restaurant booked √
Bomboniere - Still working on them !!!

- The in-laws have been challenging. Trying to keep them entertained as well as making sure they get to spend time with Max and Doodou has been tiring.

- My Mum is at home now but is still fighting her lung infection, she is on oral antibioics after being on IV's. She is still very breathless and tired.

-Max has stopped taking the Dexamethazone (he was only prescribed to take them for 2 weeks), his nausea has been kept at bay but he has less of an appetite. I keep telling myself I must be happy that at least he is eating something even if it is a little. The palliative care nurse has given us a wheel chair in case we need to use it for any big day outings.

-Did I mention I am tired ? gosh I would love just one night to sleep through. I shouldn't really complain because Doudou sleeps really well of a night he just eats and falls straight to sleep again. He goes down at about 11-12pm wakes at 2-3 then up about 5-6, I just seem to really struggle in the mornings. I want to sleep and he doesn't but he is full of smiles at that time so makes it all worth while.

Morning smiles.

Too tired to think of a title.

Wow over a week since my last post, that is unlike me......It has just been crazy around here. We are ok, I am very tired but ok. Here is an update in points.

-Mother-in-law and Stepfather-in-law have arrived, we have been busy with them. MIL is a bit challenging as she has good days and bad days mentally and you just never know what you are going to get. But they are absolutely in love with Doudou and are lovely with him, although I can't leave him with them. FIL walks with a walking stick but can still walk further than Max. So things are still done very slowly.

-Doudou has good days and bad days with his reflux, but mostly good.

-Max has a bit of an appetite and has not vomited but needs to ween of the medication that has been working next week so fingers crossed he continues that way.

-My dad has been in and out of hospital with kidney stones, he is better.

-My Mum went into hospital last night with what we think is a lung infection, we are still waiting on tests results. Fingers crossed it isn't anything serious.

-I lost a very lovely ex colleague this week. He was a wonderful character, a huge Rod Stewart fan who had the blonde shaggy hair and earings like Rod and he wore red shoes. He was a real whinging Pom but we all loved him for that. We are going to his funeral today. RIP

-We bought a new car! My first brand new car, the old one was dying and Max insisted that we get a new reliable car as we don't want to get stranded with a baby in tow. It is great and has so much more room than the old one.

-and much more.....

Apologies for not commenting on blogs of late, I usually read with one hand clicking the mouse as I feed Doudou during the night but don't have a spare hand to type with.
Ok I better go and have a shower and then prepare bottles. My Mum was going to look after Doudou today whilst we go to the funeral but now she is not well in hospital so hopefully my sister can look after him. I love my sister, she has been a huge help.

Here we are.

I am frightened to speak too soon but my boys seem to be more settled.

Doudou is doing much better with his reflux and colic, he isn't screaming down the house like he was last week. I am not sure I can pinpoint exactly what has helped because we made a few changes at the one time....so we will continue with everything. I started him on Infacol and he has had a few sessions of cranial osteopathy, something is helping. He is the same settled boy he was before, he still gets his unsettled period every day but apart from that he is wonderful. I am so in love with him, his smiles just melt my heart. I might be in tears and then he smiles and coos at me and just makes my day and his Daddy's day too.

Max was in a bad state early last week. He wasn't eating and he wasn't drinking he just couldn't keep anything down and just wasn't hungry after not eating anything all day. I thought I would have to take him to the hospital if he kept that up. He has lost almost 15kgs (33lbs) most of that in the last few weeks. He has this aversion to going to the hospital he thinks that if goes they will keep him in and he will never come home. He is feeling very down. He is still in a lot of pain, even with all the strong painkillers. When he is in pain he is in a horrible mood and can easily snap at me for no reason, which is quite upsetting because I am doing my best. I know it's not him it's the combo of the pain and drugs, and he just isn't himself. He saw his palliative care Dr who has prescribed him some steroids and another anti nausea drug....which touch wood seem to be working he hasn't vomited since yesterday. If he can get the vomiting under control then they can focus on getting the pain under control. Getting some radiotherapy on his back/hip is a possibility. The Dr had a feel of his stomach and seems to think the main reason for his vomiting is caused by his liver mass which has grown quite large now and is pressing on his stomach. Max has this very loud and powerful cough which startles Doudou every time. His cough also has a lot to do with his nausea because it triggers the gag reflex and he ends up with his head in the toilet bowel.
Some days have still been quite challenging and stressful but I manage to get through them, some days with tears and some days with out. I am just hoping that Max continues to eat and drink and keep it down because that has been very stressful and upsetting for me. I hate to see him deteriorating.

We went shopping during the week driving with vomit stops on the way, thank god for spew bags is all I can say ! Anyway I had lots to do so we hired a motility scooter for Max it was a great help it meant that we could get things done in 3 hours in stead of 6 and he was comfortable. Doudou was a complete angel he slept in his pram most of the time except for a stop for a nappy change and feed. Beautiful boy.

Max's Mum and step dad arrive on Friday from France. We are not sure what to expect from his Mum as she has not been mentally well since the last time she came to visit, after the suicide of her brother. His step dad says she doesn't do much any more, so I don't think we can expect much help from her when she is here. They are staying in their own apartment which should allow us to have some space. Depending on Max's mobility we hope to get out and take them to some sights, they have both been to Australia before and seen most things, the main reason for their visit is to see Max and meet Doudou. We thought that whilst Doudou's Grandma and Step-grandpa are here we ought to organise Doudous Christening. So in amongst everything else that has been happening I am trying to get it together...slowly.

So here we are....onwards and upwards....fingers crossed.

Drowning not swimming.

Most of the time I swim along, stroke after stroke doing really well. Occasionally I might bump into the lane rope or get tired and need to slow down and I am ok with that. I am learning so if I can't get my stroke precise every time, I understand that. But then all of a sudden whilst swimming along lap after lap...Yank! I feel like someone or something grabs my legs and pulls me under and I can't breath. I am drowning. Well this week I have been drowning and have been really struggling to come up for air, just when I might get a bit of breath... yank! down I get pulled again.

Doudou has been in so much pain and screaming his little lungs out, gosh I hate seeing him like that it just breaks my heart. We ended up at the Children's Hospital on Saturday because I couldn't be sure his pain was from his silent reflux, as it turned out it was but gosh the agony he is in is just horrid. He just doesn't sleep during the day, he may settle for a bout 5-10 minutes at a time until the next wave of pain comes. I have changed his formula to an anti reflux formula but it hasn't helped much. Today I took him to see an osteopath to see if Cranial Osteopathy will help, he will have a follow up mid week, fingers crossed it helps. The only way to soothe him a bit when he is in pain is by giving him cuddles and stroking his forehead but because he is in pain pretty much all day long it means I am cuddling him all day long, I do love cuddling him but I don't get anything done. Max helps with the cuddles when he isn't zonked out on the couch or having a coughing attack or having his head in the toilet bowl dry reaching.
I am getting used to Doudous cries now, but those when he is in excruciating pain...argh I find them difficult to listen to, I just want to take all his pain away...poor bubs.

Yes Max is still not well at all, he hasn't improved. It really gets me down seeing him like this. I just want my hubby back, I need him. We need him. But the truth is I don't know if I will get him back and I need to deal with that, deal with the fact that I will be doing everything on my own like I am pretty much doing now. Just the simple things I would love help with like getting the capsule or pram out of the car, Max just can't physically do it. Putting some washing on the line, preparing milk bottles, cooking, he helps on the odd occasion but very rarely. If I don't put food in front of him, he just wont eat.... a bit like Doudou but the problem is unlike Doudou he is just not interested in food. For someone who loved his food this is difficult to accept. He is still in a lot of pain even with the mega pain killers. He is now using a walking stick because of his hip pain. Going shopping is a real chore for him, he needs to sit down every 10 minutes or so. It makes for a very slow process, no more ducking into shops for us. Between Max's stops and Doudou screaming in pain and his feeds and nappy changes it is a full day experience. It's something we just have to get used to....It wasn't meant to be like this.
Max is seeing his palliative Dr on Thursday, he really needs to get this nausea sorted out and the pain in the hip. He may need to get some more radiotherapy on the hip. The pain in is rib has got a lot better since the radiotherapy which is good. He is just getting so down about it now, he always looks so sad and that breaks my heart too.

Some days it all just gets too much....I hope I can come up for air and keep swimming soon.

Sans regrets

Max's Mum and Stepfather are coming to visit in a couple of weeks from France. Unfortunately we no longer have the room, now that Doudou has arrived so we have organised a serviced apartment for them that is not too far from us. My sister, Doudou and I went to pay the deposit for the apartment. We met up with the manager and after filling out the paperwork and making the payment we got talking about babies as you do when you have a very newborn in tow. She was a lady in her late 40's and she told us she didn't have any children and asked us "why do people assume, just because you don't have children they think it's because you didn't want any ?" Oh I wouldn't think that at all. I told her that Doudou was an IVF baby, so if we didn't have children it was by no means because we didn't want any. Oh yes she continued my husband and started doing some infertility tests but her husband wasn't really interested in having children because he already had two from a previous marriage. So she just gave up on the idea, gave up on her dream. I could tell she had regrets. I felt sorry for her, sorry that she was still living with that pain in her heart.

After Doudou was born and I held him in my arms, the first thing I said to Max was THANK YOU. I didn't have to explain why I was thanking him, he understood why. I can never thank him enough for allowing us to have a go, ok so it was more than just one go. I thanked him for being ok about using donor sperm, thanked him for letting me try again even after seeing me go through all the pain of the loss of Crumpet and Bubble. We almost gave up but I convinced him that we should try again and I am so glad we did, I thanked him for that. Max in return thanks me for bringing this little ray of hope into our lives. And Mummy and Daddy thank you Doudou.

Here he is showing off his beautiful beanie made by the clever annacyclopedia.

Here he is showing off his gorgeous smile, well part smile.

It's not dooms day!

It has been a challenging week, but we managed to get through the toughest of days and it's all worth it when I can kiss and cuddle my boys. My worst day this week was dealing with a very unsettled Doudou who was screaming blue in pain with colic....all day. A vomiting and very sleepy husband, sleepy due to his medication. A broken hot water system, a maintenance man installing hand rails and a hand held shower for Max and my mother in hospital all in the one day. By the afternoon I had my breaking point ! I just took a deep breath, had a few tears and managed to pull it together. Phew!

My Mum is ok, she had a bad pain in her head, pins and needles and was very dizzy, we where concerned it was her AVM. They kept her in over night for monitoring and all was ok.
Doudou has had better days with his colic and Max, well Max is still very sleepy and is finding it challenging to keep his food down. Some days he feels he is making progress other days not so much. But he will get there! I have to believe that!

Today I celebrated my 41st birthday! I am 41 and I am now a Mum! This was the first birthday in a very long time where I didn't think of my birthday being an infertility time bomb. I wasn't thinking that my fertilty clock was ticking, I now have my beautiful boy in my arms. I still can't believe it. I just hold him, cuddle him, kiss him and I am totally amazed that he is ours. Finally. I was pregnant and I bought my boy home. Unbelievable. I hope that I have given some hope to others that have thought that 40 is their fertility deadline and wont conceive beyond that. I realise that every one is different but I was so convinced that it wasn't going to happen due to my age...but it did. Truly a gift.

I had a lovely day. My sister took us out for lunch, it was glorious day. Max did his best to keep his lunch down, Doudou was wonderful and has just given me the best birthday present...his first 5 hour sleep ! What are the chances of another 5 hour run through the night ? Asking for too much perhaps ?

Kiss, hug and touch.

A couple of nights before Doudou was born I found Max sitting in the bedroom, crying. When I asked what was the matter, he responded it's ok these are tears of happiness. Well that was a relief....he continued to tell me that he hadn't told me before but when he went and saw the lung specialist a few months ago he told him that looking at the lesions on his lungs he probably wouldn't live to see the month of August. Yet here he was towards the end of August he was going to see his son being born, he had made it and he was ok. This was his first goal conquered and his next was to see his sons first Christmas. This just crushed me.... Nobody knows how many tears I cry.

He has deteriorated so much in the last week and I am not coping the best, watching him being ill. I don't know if it is still the radiotherapy side affects the painkiller side affects or the cancer just taking its toll. Every time I touch him, I seem to find a new lump, a new cancer. He has lost so much weight, his muscles have become jelly. It seems to be such an effort for him to keep any food down, he can hardly stand for long and not to mention walk very far. All he seems to do is sleep all day, zoning in and out. I feel like I am alone, just me and Doudou. He can't help me with anything when he is feeling like this. My sister comes and helps most days but it has been challenging looking after both of my boys. Making sure that Max eats and drinks something, finding foods that he can keep down. Doudou was challenging for a while this week with colic and reflux, but has seemed to have settled a bit better the last few days. The good news with Doudou is that he has finally put on weight and is now over and beyond his birth weight, which bought a huge smile on our faces.

I just want every kiss, every hug, every touch, every silly thing that Max does to last forever. I need to etch it all in my mind, because all I will be left with are the memories........I know Max is very scared, I too am so fucken' scared......Nobody knows how many tears I cry. It just isn't fuckin' fair !!

What's in a Name ?

I have been wanting to write this post all week only to sit at the computer and to be distracted by a million things that need to be done. Since Mel has written about this very topic in her latest post, the timing must be perfect.

So, what's in a name ?
I hated my name as a child and when I was growing up. It was too different, it is an Italian name, a wog name. I was named after my Grandmother but I just wanted to be an Aussie kid a Kylie, a Michelle or a Sharon like the other girls in my class. But as I got older and into my late teens, I started to love my name for the same reasons hated it growing up. It was different, I wanted to be an individual I didn't want to be like every one else and it was even more special that I was named after my Grandmother and I also loved the meaning of it in Italian. Funny how it was complete turn around.

A lot of people have asked where we got Leo's name from and if we named him after anybody in particular. Although I have a cousin in Italy named Leonardo and Max has an uncle named Leo, he was named after neither of them. Max and I have played the baby naming game for a very long time and we could never come to an agreement. Then one day Leo was mentioned...to be honest I don't recall if if was me or Max who threw the name out there as we often just threw random names at each other letting each other criticise it in some form or another. When Leo was mentioned we kept tossing it at each other and we liked it, we liked it a lot actually we loved it ! We loved it for many reasons.
1. We wanted a short name because both of us are known by our short names.
2. It can easily be translated into English, Italian & French all spelt the same way just with a different accent.
3. It is a cute babies name but still a good strong name for an adult.
4. He is our little lion who has bought us much strength in difficult times.
5. When he was born he just looked like a Leo.
6. We also loved that it went so well with his second name, his fathers name.

I hope Leo loves his name as much as we do and doesn't go through the I hate my name stage like I did, and if he does I hope as an adult he loves it. Almost everyone has complemented us on our choice of name, which is nice. And even though lots of friends and family were trying to guess his name, no one actually guessed it so it was a nice surprise for all.

We are lucky we had a boy because Max and I never could come to an agreement for a girls name.... I suppose there was a reason for that.

So having written all about his name, I have decided that on my blog he will continue to be affectionately known as Doudou. We still call him that from time to time, he has also been called lots of things...when he is all wrapped up he is our Little Enchilada, Cous Cous, or little sausage....and no doubt new ones will pop up from time to time.

Here are some more pics of our little Doudou, because we can never take enough :-)

Feeding - Part 2

I just wanted to clarify that I am not breastfeeding due to attachment issues but I am expressing breast milk with formula top ups. So Leo is only drinking from the bottle. Thank you for your tips there are some very useful ones there which we tried today. He has had such a turn around today , it is like he knows he has to behave for his mum. I have been talking him through each bottle and telling him how proud we are of him once he finishes his bottle or gets close to the end, he just stares at me and laps it all up. He is so gorgeous. He really is a great baby, apart from the feeding he is wonderful and rarely whinges only when he has some wind and can't get those pesky farts out. Gosh they stink ! How does a 2 week old out do his Dads farts ? I can put him down and he self settles, he doesn't scream the house down unless he is famished, but due to the extra feeds he rarely gets to that point.
Don't get me wrong he still has his unsettled times of the day/night. Yesterday it was from 4am till 6 am and I was fighting a headache at the same time, so not much fun. But we get through them.

I hate not being able to drive after having the Caesar. It really stinks, I hate having to rely on my sister for everything. Max doesn't drive even if he was feeling up to it. We have been doing the grocery shopping online, which is one less thing to do. Even if we just want to get out of these four walls, just to get out of the house because some days we suffer from Cabin fever. Tomorrow is meant to be a really warm Springs day so we will go the the park and try and go for walks every day. My wound is still a bit tender even to walk so I don't want to over do it just yet.

Max is really over feeling crappy, he just wants to be part of his family and help with Leo when he can. He shouldn't fight it and rest when he needs too, he needs to ride it out and hopefully it will pass quickly for him. He is getting down about it, I am getting down about it. I hate seeing him like that, I hate that he is in pain again too, new pain.

Feeding

Max's radiotherapy side effects have hit badly. He is so tired, he just wants to sleep all day and night. His stomach is playing up and has lost his appetite and has been throwing up. It been challenging looking after them both. I don't really have to look after Max apart from when he is throwing up. ...but I worry sick about him. I just want him to feel better so he can get back to enjoy being a daddy. He has been feeling so shit he just hasn't been up to it. He just needs to get past this hurdle. He is missing his time with his boy terribly.

I had the community nurse come around today and had Leo weighed. I am so dissapointed he has lost more weight. I am constantly feeding him but he just loses interest. The nurse wasn't too concerned at this stage but it just makes me feel like utter shit, I can't even feed my son, what is wrong with me ? She will pop around again next week to check his weight. We have a little plan we will try which is basically stimulate him quite a bit before his feed so he doesn't lose interest and sleep on the job. Also to wake him every 3 hours for a feed, he usually wakes before then anyway, on occasion he has pulled a 4 hour sleep. He is doing well in all other areas though. He is just so gorgeous, I just hope I can fatten him up!

Where does the time go ?

Days with Leo in our lives just seem to fly bye. There always seems to be something to do and if there is nothing to do for a short moment you can certainly waste a lot of time just staring at that little face and watching expressions, new expressions every day. We are just so elated and can't believe we finally have this little one in our lives. Leo is going to be 2 weeks tomorrow, he is just wonderful and settling very well. He does have some some unsettled moments but that is expected. He sleeps through anything, yesterday he slept through the chainsaw that was in use by the man installing our new fence right outside his bedroom window and today he slept through the bang, bang of the electric nail gun! We try and carry on around the house as normal as usual, no tip toeing around him so he gets used to all the sounds and noises and hopefully will continue to sleep through anything.

Sunday was Fathers Day and Max got to celebrate his first. It was our first big day out as a family. We were invited to my brothers house for a lovely lunch with the family. I think I packed everything but the kitchen sink in Leos bag. It is so hard knowing what to take, I definitely over packed! I am sure I will get it together eventually. Leo was on his best behavior although every one was waiting for a cuddle once he woke, but he managed to pull 4 hours sleeps, much to the Aunties and Uncles disappointment. Max was not feeling the best unfortunately but he enjoyed his day and was spoiled just the same. The radiotherapy has finally caught up with him. His hair has started to fall out, the tiredness has kicked in and his eyes a burning. I said to him it has probably been a delayed reaction because he has been running on adrenalin since Leo was born and now that we are home and settling in it has hit him. He was avoiding holding and feeding Leo for a while because he didn't want to get hair all over him, it is falling out in chunks. He is feeling manky but how could he resist ? Leo can't get enough of his Daddy and Max can't get enough Leo. Max just makes sure to wear his beanies when he is holding him and every one is happy.

I have been very tired, I am ok getting up during the nights for Leos feeds but it seems to catch up with me by the afternoons. I am trying to get a sleep in at least once a day when he is down, but I think I might need to get a bit more in. My scar seems to be healing nicely, I am still fairly sore but just take some paracetamol for pain when it is bad.

The community nurse is coming to visit on Thursday and I am looking forward to getting Leo weighed, I am hoping he has put on weight. He is definitely feeding a lot better. I have persisted with trying to get him to latch on to my breast but he doesn't want a bar of it. So much for "perfect" breast feeding breasts! I think my nipples are just too big for his mouth. I will continue to express but even that is becoming tiring, I will do the best I can and be satisfied with that.