Dear Nico - 20 months

Dear Nico


There is not much new to tell you this month. Life is just trudging along and you are following your usual up and down pattern. Actually, you were following an almost predictable one for a few weeks; good night, bad night, good night, bad night.


I am trying to find suitable care for you for when I start working longer hours on a Monday. I didn't realise it would be so hard. The idea of you going to childcare doesn't fit with me so I am going to try and get someone at home. It's about $36/ hour from a care agency though and Windermere In Home care, the only place with affordable rates ($15) has no carers available. In Spring or Summer I would be les reluctant to send you to Brooklyn's daycare as there are less viruses then.. hopefully. I still worry that you are too demanding for them to deal with and that would not be fair to you or the centre. The great thing to come of my longer shift on Monday is that I will now have Saturdays with the family. I can not wait.


Tiffany from Bialla brought around a standing frame for you last week but we haven't used it much as you have been too grupy. I am sure you will like it when you get the gist though. We also still have the switch toy I talked about here  which has been great. I am not sure I will be able to talk them into another week though

In a Monkey standing frame

We have to get you a passport photo this week... I am not looking forward to it. There are so many rules and they are strict. It took 3 attempts to get them to accept one of Brooklyn at 6 weeks old and she was much more cooperative than you.

You have to:
have your shoulders square
look at the camera, dead on
not smile or frown
not have me visably holding your head
not appear to be lying down
have a plain background free from wrinkles or shadows
have both ears in the picture

Good luck with that. We really really want to see your Nana and Grandad though so if you could oblige.. I would appreciate it greatly, okay?

Love you much
Mama 

Dear Nico - 19 months

Dear Nico,

It has now been a year since you came home. It really was the best day ever, even knowing what I know now... about life and how it is. That day, the day Brooklyn was born and our wedding day. The day you were born, the joy that usually comes with childbirth was there to some extent but it was overshadowed by fear, uncertainty, doubt and worry.

Until the day you came home, it never really lifted. The heavy cloud dissappated to a light mist but it was always there. Every trip to the hospital, every application of the avaguard, every step through the glass doors into that NICU bubble... all a reminder that the rug could be pulled from under our feet at any moment and we could be dropped a few "bays" and the wait for your homecoming could be longer.

A year down the track, at almost 19 months old, I got to spend my first mothers day with my little family all together. You must have known it was important as you gave me a decent sleep and had a restful day. I was not well that weekend but when I got myself together, we took a drive down to Phillip Island to spend some time out as a family. This is a very rare occurance but again, you put on your best face and we had a great day at the chocolate factory and having Fish n Chips by the pier at San Remo. We got to see a seal diving for fish and tried to show you but we were to slow by the time we got you out of your chair, it didn't resurface anywhere we could see it.

As for the rest of the month, we have increased your solid food and mostly you enjoy it. Lumpy stuff still makes you gag though. Nights have been up and down, we have had some shockers where you like to ensure that I see every hour on the clock through the night. We have had some good ones where I have only gotten up once or twice. A few nights aog it was just once and while having a break from your bottle, Veuve came into your room to visit. She kept poking her head over the foot stool and had you in hysterics. My favourite sound in the whole world.

Love you my little man
Mama

Dear Nico - 18 months

Dear Nico,

A little late this month, it's been a bad week so I had to chose sleep over writing.

18 months is a milestone and it makes me sad to realise how old you are. I don't know how to express why without sounding negative and like I wish you were your sister but I will try. At 18 months your sister had experienced so much, she had been overseas half a dozen times, had holidays and her life was great. She was having playdates and running around like a crazy chicken, learning so much. We didn't know it at the time but she was about to have an amazing little man come into her life. You were supposed to be many more months away. I look at your day to day life and my heart breaks for you. Still so trapped, so frustrated. Watching life go by, understanding what is going on around you but not being able to participate the way I know you would want to. Not being able to give you the usual experiences a 1 1/2 year old has. It's just not fair.

You have your squiggle chair now, albeit with the wrong head support. It means you have a good supportive place to sit and we can push you around the house. It goes high to be at table level with us, or low to be at Brooklyn's play height. She loves to push you around and I think she is a bit envious of your cool chair. She loves her Mister Man and tries so hard to make you laugh or smile. You definately know what I am telling you when I say "Here comes your sister" or "Where is Brooklyn?!" and you get really excited. Lately your favourite game is to chase her around the house. I hold under your arms and you run after her. It makes all of us laugh and gives me warm fuzzies.

We continue to work on teaching you to control your arms/ hand/ feet. There have been some good signs, all dependent on your mood. Biala (Early Intervention) has a lot of "switch toys". They are your usual baby toys with music or movement but they have been adapted to have a giant switch, about the size of a large saucer/ small bread plate. The idea is to get you to hit the switch with your hand or stomp on it with your foot. You are good at it with your foot, stomping is a natural movement for you. On the right day, you are getting your arm/ hand to do it as well, if you are lying on your side and we support your shoulder to get you arm forward. I am such an emotional mess, I often cry when you get it right. Silly I know but it is such an encouragement to me that you will be able to amuse yourself at some point in the future and not just have to sit on the sidelines.

Today you got your  Bard Button, which looks like this the top sits on your skin like a little lilo valve. It should make you more comfortable when sleeping since you insist on being on your tummy. The tube you had really annoyed you. It will also make it easier for us to dress and carry you. It was a quick op today and even though you were pretty miserable after coming out of general anaesthetic, by later in the afternoon you were back to normal.

You have been pretty unsettled the last 2 weeks, I think because of your molars. you have one giant one through now and the other 3 are all so close. You are back to hourly wake ups most nights but go back to sleep pretty quickly. I just wish I could do something to take all the pain away, teeth or otherwise. I feel so helpless and hopeless. I really do feel like the worst mother in the world when you are screaming... I want so much to fix it all but just have to walk away sometimes to avoid having a breakdown.

Pics to come.. sometime soon

Love every little piece of you, but most of all your giggle.


Mama

Dear Nico - 17 Months

Dear Nico

We are so happy to be getting many more smiles and giggles from you this month. You have burst into hysterical laughter at the silliest things and when you do, you use your whole body. Brooklyn loves it and announces your laughter to whoever is around, just incase we didn't hear. This is a pic from just before you got your NG tube out, I think Brooklyn's face shows how much she loves you. (Note to self: fix the pic soon!)

You have lost your phobia of your bedroom, thank goodness. We have had quite a few nights where you have only woken 2-3 times at night... and even a couple with only ONE wake up. THANK YOU!! It is nice to know you can do it and even better to think that if it is pain that makes you wake, the pain is easing.

Early Intervention at Biala has picked you up off the waiting list. It's is a mixture of therapists and a playgroup. The physio comes to the house every 2-3 weeks too. The main focus for you is to get you playing. We want you to be able to reach, hit and grab things so are doing lots of work on that. You are already bringing your arms inwards much more than you have been, instead of having them extended out to the side all the time. I even think you might have started playing peek a boo, but you don't quite get your hands all the way to your eyes. You lift them to your cheeks, put them down and give a huge smile.

You have put on close to a kilo this month and reached the 8kg mark. Since leaving hospital 9 months ago, you have put on 3kg which isn't much for a bub. You are still not even close the 3 percentile weight chart for your "corrected" age of 13 months but you are approaching the 5th percentile for length which makes me smile. Somehow my family's height gene skipped me but at least it appears my children got it :D You are eating 2 meals a day of mushy food and I give you some "real" stuff too, like toast, rockmelon and apple. You are getting pretty good at chewing but it is pretty tiresome for me to have to hold it at your mouth for you, so that's another reason we are working on hand control!

You will get your PEG tube changed to a little button in mid April... the day before your 18 month birthday. It will make it som much more comfortable for you to be on your tummy and a lot easier for us so pick you up and hold you too. Something to look forward to.

Love you much

Mama

To My Miracle - 16 months

Little Man,

You are still so little, so helpless, so adorable. I look at you every day and wonder what goes on in that little head of yours. I am sure there is plenty, but it would be great to know what.

You have developed a severe hate relationship with your bed the last few weeks (it used to be just staying asleep you despised.) As soon as we enter your room, you scream, no matter what mood you were in before. If I don't put you in bed straight away, you calm down. I can feed you in there, change you and all that but the second we stand and head toward the cot, you start again. Its awful but at the same time I am pleased. That sounds crazy, I know it does. What kind of mad mother would be glad their child had a tantrum upon the sight of their own cot. The kind of mother who, when tantrum starts thinks "Yesssssss, that is blatant proof that there are plenty of connections happening in his brain ... he is associating room with cot with sleep/being alone. He is thinking. Physically he can't show us much, but inside, there is a lot going on"

Having your grandparents here last week was the best week you have had. We put it down to the fact that you just have to have something going on. You get bored easily and this is understandable. The more people around for you to interact with or observe, the better. They love you to pieces, which is no great surprise but with all the challenges you have given us, I am sure they were wondering what they were going to walk into. Well, what they walked into was a Nico FULL of smiles. Every time they caught your eyes you grinned a funny closed mouth grin I hadn't really seen before, followed by your giant, wide open smile, showing off your rabbit teeth. (2 at the bottom, 3 at the top) They looked after you every morning and sent me back to bed to catch up on sleep. Nanna fed you weetbix and Grandad pulled funny faces at you.

This month, just before Nanna and Grandad arrived, you had a tube put through your tum into your stomach. It's a good 75mm across at a guess. You had a terrible time recovering the first week and stayed in hospital longer than the anticipated 2 nights. I felt sick to my stomach, wondering what on earth I had signed those stupid consent papers for. Now, 2 weeks later, you are amazing. I still feel terrible that we had to go to such lengths to get you fed and growing, but I would do anything for you and unfortunately this was one of those not-so-fun anythings. So if you are 15 and reading this, I am sure I have already told you about the scar near your diaphragm... but if not, that's what it was all about.

Love everything about you (except perhaps the lack of sleep is lower on the love scale)

Mama.

PS: Drinking, oh my, the drinking. You are becoming a champion, slowly but surely. Since September / October, you have been averaging 20 ml per feed orally. And when I say averaging, that is only because once a day there was sometimes a 70 ml feed. The others were all 5-10 ml if we could cajoul you at all. In the last 10 days, since recoving from the PEG insertion, you have 3 times drunk 180ml+, and averaging 120ml.

To My Miracle - 16 months

Little Man,

You are still so little, so helpless, so adorable. I look at you every day and wonder what goes on in that little head of yours. I am sure there is plenty, but it would be great to know what.

You have developed a severe hate relationship with your bed the last few weeks (it used to be just staying asleep you despised.) As soon as we enter your room, you scream, no matter what mood you were in before. If I don't put you in bed straight away, you calm down. I can feed you in there, change you and all that but the second we stand and head toward the cot, you start again. Its awful but at the same time I am pleased. That sounds crazy, I know it does. What kind of mad mother would be glad their child had a tantrum upon the sight of their own cot. The kind of mother who, when tantrum starts thinks "Yesssssss, that is blatant proof that there are plenty of connections happening in his brain ... he is associating room with cot with sleep/being alone. He is thinking. Physically he can't show us much, but inside, there is a lot going on"

Having your grandparents here last week was the best week you have had. We put it down to the fact that you just have to have something going on. You get bored easily and this is understandable. The more people around for you to interact with or observe, the better. They love you to pieces, which is no great surprise but with all the challenges you have given us, I am sure they were wondering what they were going to walk into. Well, what they walked into was a Nico FULL of smiles. Every time they caught your eyes you grinned a funny closed mouth grin I hadn't really seen before, followed by your giant, wide open smile, showing off your rabbit teeth. (2 at the bottom, 3 at the top) They looked after you every morning and sent me back to bed to catch up on sleep. Nanna fed you weetbix and Grandad pulled funny faces at you.

This month, just before Nanna and Grandad arrived, you had a tube put through your tum into your stomach. It's a good 75mm across at a guess. You had a terrible time recovering the first week and stayed in hospital longer than the anticipated 2 nights. I felt sick to my stomach, wondering what on earth I had signed those stupid consent papers for. Now, 2 weeks later, you are amazing. I still feel terrible that we had to go to such lengths to get you fed and growing, but I would do anything for you and unfortunately this was one of those not-so-fun anythings. So if you are 15 and reading this, I am sure I have already told you about the scar near your diaphragm... but if not, that's what it was all about.

Love everything about you (except perhaps the lack of sleep is lower on the love scale)

Mama.

PS: Drinking, oh my, the drinking. You are becoming a champion, slowly but surely. Since September / October, you have been averaging 20 ml per feed orally. And when I say averaging, that is only because once a day there was sometimes a 70 ml feed. The others were all 5-10 ml if we could cajoul you at all. In the last 10 days, since recoving from the PEG insertion, you have 3 times drunk 180ml+, and averaging 120ml.