Practical Parenting Magazine makes me reflect

I got interviewed by Practical Parenting magazine this week. It's nice to be able to share our story and reflect on how far we have come.

The focus of the story was going to be living with sleep deprivation but I am not sure if I was able to give enough insightful commentary on that side of things. Not because I don't know enough about it but because after a mediocre night, at 10am when they called, my brain hadn't woken up and I felt like I was sturuggling to put coherant sentences together

It's funny how speaking to a person not involved in the situation makes you realise how insane it must seem from an outsiders perspective.

What goes through your mind when havnig a baby at 5 months pregnant? How do you not end up in a psych ward after over 7 months of daily hospital visits? How do you not fall asleep at the wheel driving to countless medical appointments weeks of waking every hour or two?

Hearing the story come out of my mouth, I know it all sounds incredibly traumatic and difficult. If you follow my blog, it must sound like my life is awful and how do I drag myself out of bed every day. It was probably pretty traumatic, I won't pretend like it was ordinary, but even at the time I remember thinking "This should be a lot harder, there should be more misery and more prolonged tears". Reality is, life continues around you and you get sucked up into it.

I remember so clearly, the day my Opa (grandfather) died, I looked out the window into the traffic and was honest to god shocked that the rest of the world was just going about its daily business. How dare those people not have cancelled their plans for the day. Who was that insensitive couple laughing as they walked past. The feeling lasted a few days. I had the same thing for a little bit with Nico, but not long... Brooklyn's life went on as per normal and therefore mine did too. I would have loved to curl up foetal position in bed and not get up for days just to recover, but on top of 19 month old Brooklyn's needs, there was expressing to be done, trips to the hospital had to be made. I was grateful for the To Do list, it gave me direction I needed toget back into life... and apart from not living with my newborn baby and having to visit him, life felt normal within a few weeks. It stayed feeling normal most days of the entire 7 months.

So I know I use my blog as an outlet and therefore I most likely write more about the crappy side as that is the bit that needs outing. I don't want anyone thinking I get out of bed in the morning and lead a miserable existance, feel sorry for myself and only face the day because I have to. I get huge amounts of joy from both kids and as hard as it is dragging myself out of bed after 3-6 hours of broken sleep, most of the time by mid nappy-change-upon-Nicos-wake-up, there is a smile on my face as I curse his cheeky grin and how he looks like he has just woken from 12 straight hours of sleep.

Flash back.

Today I had one of those days. A day where I just wished I could rewind my life 5 years and be in a place where I have no one else to take care of, no one to worry about or sort out. Just for a day. The time where I could lie in bed all day because of a minor but persisting headache. The time where if I didn't want to cook dinner, I could have Weetbix sprinkled with Milo and no one could care less. But that was then.

5 years ago, I lived the high life. Literally. We had an apartment on the 22nd floor in the CBD of Melbourne.  Our view extended from the MCG to the left, Albert Park dead ahead, to Port Phillip Bay over Port Melbourne on the right. We had a gym, tennis court, swimming pool and barbecue area on the 3rd floor, and the Crown complex was at the end of our street, 3 minutes walk away. Every day I walked into that building, through the foyer with its little couches that no one ever used, I felt like I was living in a hotel, but in a good way.

We lived 3 floors up from where those front balconies become triangular

We both worked 5 days a week but somehow we saw more of each other then. Our life comprised of shopping, bars, lazing in parks and going for drives. My favourite weekend away was to the Japanese Mountain Retreat. Just driving into the grounds, we knew we were about to be experience something special... being shown into the room was beyond serenity. Shoji/ rice paper screens, tatami mat, neck deep bath next to a giant picture window overlooking a private miniature Japanse garden.

I'd only like to go back to that life for short periods though. A day or two a year would suit me just fine (unless it was to the retreat... I would stay there a week a month) In this life, we can step outside to a yard, albeit small, and not not have to take an elevator. I love to wake get up - after 7am please- to my gorgeous children's smiles rather than brief acknowledging ones from strangers on the tram. We have true friends now, not the fickle "See-You-At-The-Bar" type we mainly had in our city life.

And if I have to get up in the morning, against my will, and brave the headache... these are the two that I want to stumble through the day with.

Even if Prince grumbles all day and Princess steals my convealer, puts it on her lips and plays annoying Hannah Montana songs on the guitar.

Knock Knock. Go away.

Knock knock. I am on the phone, my son is on the bench in his chair, I am cooking my daughters dinner. I don't ignore the knock, I just open the door, take one look at the smart-casual dressed young man with a folder in his hand, say "GO AWAY!" and slam the door before he even has time to say "Hel..."

This is not entirely true. There was a knock on the door. I was on the phone. Nico was on the bench. I was cooking Brooklyn dinner. I didn't ignore the knock and I did open the door and take a look at the young man. Unfortunately, the important part of the story is where it all goes wrong.

I have fallen for the electricity salesman before. I have turned them away before. I have argued at the front door with them that telling me "No, we are not trying to change your electricity provider. You still have the same power, just your bills come from someone else" but today... I was fooled.

" Hi! We are just going around letting people know something important that has happened. You would have got a letter a few weeks ago about the price increases for electricity?"

" Ah-ha "

" Well, that was a mistake, if you are on one kind of meter, that shouldn't be the case. So we are just registering those houses and getting in touch with their electricity company to let them know the rates you should be on and they have 10 days to comply and give you the better rate, or we step in and ensure you get the rate "

I was hooked. For 5 or 10 minutes I stood there as he took all the relevent information before I saw the form. Instantly recognisable as an energy transfer order. ARRRRRG. In my mind I began seething but I couldn't bring myself to have wasted the last 10 minutes and say "Go Away". Maybe I am too polite, maybe the young man had been too charming and I didn't want to hurt his feelings.

Either way, I decided to stick it out, see what the rates were and see what my company could do for me, the loyal-for-6-years consumer. Thankfully, the time I spent at the door was not entirely wasted as my current company did come to the party and give me a lower rate*. Brooklyn's dinner was not burnt and I got Nico off the bench in the first few minutes of the conversation. All was not lost, and I saved some money... so will I listen nex time? NOT A CHANCE .... but I am thinking I might send Brooklyn to the door with a totally age inappropriate sentence to recite.



*after 2 x 10 minute hold times and a further 20 minute discussion.

Can someone please lend me a crystal ball?

Nico has been home for over 7 months now.
I'd love to confirm that the roller-coaster ends when you leave the NICU/SCN bubble but unfortunately, for us this was not the case. . You know hen the roller coaster has done one lap, the guy asks "Anyone want to get off before the next lap?" He ignored our shouts of "Let us off, we've had enough!"
We have been in and out of hospital about 6 times in as many months for Nico's chronic irritability. The first 3 months or so he slept great at night and only woke for feeds. In the last 4 months tho I can count the times I (and he) have had more than 2 straight hours sleep on one hand. He got to a point of screaming, not crying, screaming, 9 hours a day. At worst it has been 18 hours, only pausing to cat nap for 30 minutes at a time. In a word: unmanageable. He goes completely rigid whenever he screams and it is almost impossible not to read "pain". So we take him to the hospital for answers:
First: Bronchiolitis.
Next: No answer. "Must just be behavioural but he is failing to thrive (500g weight gain in 3 months) so we will look into that" and his nasal gastric tube was put in after 3 months without it. He started to put on weight and was sent home, irritability forgotten
Then: "Brain irritability, it happens with premmies, he will grow out of it"
etc etc.
It has been so frustrating and saddening to see your little fighter, someone who has already worked so hard to stay in the world, struggling with something he can't communicate to you.
We have been seeing various specialists, respiratory, gastro-enterology and scariest of all specialist areas: neurology.
A few months in, during one of our first return visits to the hospital, the neurologist came by in case it was seizures. Luckily he happened to see one of these rigid screaming episodes and categorically said it was NOT seizures. I was happy and not surprised. He asked me as a mother, what my instincts said. Unrelated to the screaming, I told him was worried about cerebral palsy purely because I had just met 3 premmies with CP and knew that up to 25% of micro premmies developed this. I wasn't really prepared for his response of "Well, with the history, all we can do is put it together like a story, and in this case, knowing he had a brain haemorrhage, seeing some things like how his hands are so clenched and he doesn't really make controlled movements, the pieces fit. There is no test we can do, it will just be a wait-and-see how his development goes over the next year."
What do you do with that? Prepare for the worst, hope for the best. The prepare for the worst part, I can do. Research research research. What do I get? Nothing.
He is 14 months old as I write. 10 months corrected. He smiles and gurgles. He has the best laugh in the world. It's a real chuckle and the moment it starts, the 2 hours of screaming that may have just left you in tears yourself, is instantly forgotten. It makes everything right again.
Apart from that, he hasnt met any milestones. The only planned movement he makes is swatting the bottle away when he is being fed. There is no reaching, rolling or putting things to his mouth He has just gotten a tooth but since he doesn't have the know-how to hold something and put it to his mouth, teethers are pointless. I remember telling the social worker in the early NICU days, maybe due to the brain haemorrhage or when he got resussed, i cant remember, that I couldn't picture how we would cope with a toddler and a major disability if it Nico's prematurity were to cause him problems. Her answer was "But you would just evolve with him" and I didnt really know what she meant. I do now. Cerebral Palsy is now treated as a given. There was not a specific time when the tentative "yes it is a possibility" changed to "Yes, it is confirmed" , it just.. evolved.
Cerebral palsy doesn't really have a definition. The term cerebral palsy is completely useless to a parent wanting to know what life holds for their child. Cerebral palsy, as a term, SUX.
All i got from god only knows how many hours of reading was that he may not be able control his hand very well so writing may be messy - OR - he may never be able to walk, speak, use his arms or hands or any motor skills like that. How's that for a sliding scale of what the future might be.

We got him!!

Tuesday 18 May: At 7 months and 5 days old, we got our baby boy!! There are no words to explain what that felt like. Like there are no words to explain the feeling when you first see your newborn. Completely amazing, new and scary but so natural. After several hours of waiting around while forms got signed, meds got ordered and the doctors did their final exam of our little man, we bundled him into the capsule, thanked everyone and ran out the door. There really was a huge, audible sigh of relief as we walked out the double glass NICU doors and realising that we would never have to go back in there (unles we want to visit)
The seven months flashed through my head and it suddenly hit me that we had been through something pretty intense. I know I have thought this before but not sure if I have written it but it doesn't actually feel as bad or as stressful as it should have. I am sure there were days where I was about to have a complete mental breakdown but that has faded from my memory. I can't visualise him being the size of my hand anymore. I know his arm was thinner than my finger but I just can't picture it. Thank god for photos, thank god for this blog and thank god for Nico.
Brooklyn was at daycare so we made a quick stop to get her. We'd been telling her for a few days that he was coming home but the look on her face when she saw him in the car was priceless. She was so excited and wanted the sun shade off him just so she could look at him the whole way home. It was the sweetest thing to see her little brain processing this and the smile that just never stopped. She calls him "Little Man" and didn't leave his side the whole afternoon. We still get a runnig commentary of what Nico was up to too : "Leeko's awake!" "Leeko's crying" "Leeko's ungy" (we still aren't sure if that means angry or hungry)
His night times are fabulous. He falls asleep about 7 or 8 pm, has a feed at 10.30 and then I wake him whenever I wake up in the night, usually around 2 or 3am for a feed. I wouldn't bother but we have a few feeding issues so I need him to get in as many feeds as possible. If he feeds well, this gets him through til 7.30am, if not, there may be another feed at 6am.
Daytimes are HECTIC!
I am sure we will settle into a better pattern but at the moment, his feeds take up to an hour, every 3 hours and he is often unsettled. This doesn't leave me much time for good quality time with Brooklyn and as fabulous of a toddler as she is, her behaviour is already showing me that she is feeling it. At least they are both asleep by 8 and I get some wind down time now though. This is a new thing to me as the last 7 months have been filled with hospital visits, expressing or work, and before that, I worked 4 evenings.
If anyone has any suggestions (I have probably tried them all but worth asking) about feeding, here is our problem:
About 60% of the time, whether it's bottle or breast feed...Nico will feed for a few minutes (sometimes we won't even get that far) and then stop and clamp his mouth shut/ arch his back/ turn his head/ scream. One or all of the above. He does have reflux, he has medication for that. He is best at the night feeds when I wake him, he will still often only have one side (not enough, my supply is crap after 7 months expressing) but at least he is calm and getting a positive association happening.

Quality time with my special girl

Now that life is a bit of a logistical nightmare, I am understanding the meaning of "Quality Time". It's not that I didn't believe in it or understand it... I just thought it was for the dad's who didn't get home from work til their child's bed time.

Now I am the Invsible Mum. My time with Brooklyn has been cut down to maybe 1/4 of what it was. Not by 1/4. To 1/4. I wrote out a mini schedule with 2 times slots per day: AM and PM and 3 activities "Work" "Nico" and "Brooklyn" for the nurses so they knew when to expect me. Work got 3 slots, Brooklyn got 3.5 (in just 3 days), Nico got 5.5 and Saturday was left blank. Seeing this on paper, although completely skewed as of course I spend time with her each day, made me incredible sad. I wanted to cry. My little girl, my amazing little girl, was going through one of the funniest ages in her lifetime, and I was missing chunks of it.

Through this little exercise, I found Thursday's has become Brooklyn's day. It is the only day I have to devote the whole day to her. Even then I miss the start of it. I go to the hospital at 6am, feed Nico at 8 and get home by 9.30am. On Wednesday night I had our day all planned to makes sure that the time we did get was all about her.. not me or the house (although we did do a few groceries but the trip was to get her some fairy wings)

We started off the day outside where she had been helping her dad move some stones. We filled buckets, ran along the side of the house and searched for snails... something either her Nana or cousin taught her...

With fairies being her latest obsession, I was ordered inside to watch The Fairies which I had recorded for her the day before. We did the Boogie Woogie Sand Dance (sha-a-ake your bo-ot-tom), helped Harmony and Rhapsody write a letter and scoffed at the flying boat.

Just in time for lunch we cooked some muffins. She shook in the ingredients, mixed it up and most importantly, licked the spoon and bowl!!! She stood on a backwards chair in front of the oven and watched in amazement as they grew and grew... it was almost, but not quite as exciting as getting to eat them. She was even allowed to have "juice" with her lunch, just like her mum. (A splash of juice in a cup of water)

After a nap we went to the shops and bought some fairy wings and playdough equipment. This resulted in a little fairy sitting at Brooklyn's table playing with playdough for the afternoon. Only after another trip to the beach in the flying boat with Harmony and Rhapsody though. With her wings and wand, obviously. It wan't until we put this on that she pointed out that she didn't have the "eyes" like the other fairies. Oh well. Thursday will come again next week!