It's my party

Last weekend we celebrated Jensen's homecoming with a big welcome home party for all of our dear friends and family that have supported us throughout our journey. As well as celebrating Jensen being home and healthy, this party was to say a big thank you to everyone that had us in their thoughts and prayers, those that fed us, cleaned for us, cared for us, went out of their way to help us out with things we found hard doing from hospital, those that visited us, those that understood when we weren't up for visitors, those that wiped many tears, and put up with anger, fear and angst, those that followed this blog, and all those that shared much needed positive energy around the place. It's these people, all of you, that have helped us get through the toughest time of our life, and without your love and support, this journey would have been much harder, so thank you.

The party was also an opportunity for everyone to meet Jensen. Initially, I was concerned about so many people being around and wanting to hold him. I asked Phil if we could put him in a display case at the front of the room. Those that asked for cuddles were not denied, and Jensen was such a good boy, considering the amount of stimulus around. He had first cuddles with his great nanna James, and other family members yet to meet him, some were too nervous for cuddles, but happy for hellos.

It was the perfect day for a party, beautiful sunshine and a cracker of a day. Mummy was up with the sparrows to hit the flower markets with beautiful friends Gemma and Anita. With armfuls of gorgeous blooms in tow, it was off the pick up the cake. What an amazing cake it was!! Well worth the expense. Next we hit the pub (to decorate), then it was home for a quick change and back for party time. We hired out the Atrium at the Greengate hotel, which was perfect for this occasion.... indoors, but not, light and airy, and nothing like a pub. Good food, good company, a great day.

We raised $500 for the RNS NICU, and also awareness of the importance of giving blood. This week Jensen and I will be purchasing something from the NICU's wish list with the donations received on the day. The wait staff at our party even donated their tips for the day, which was very sweet of them. We will keep you posted as to what we decide to purchase. Our next big fundraiser will be the Balmoral Burn, where we will be raising money for the Humpty Dumpty Foundation, those that donate the life saving medical equipment to NICUs throughout Australia, so start saving everyone.

It was such a big day for Jensen, and he was such a good boy. We had had a visit with Dr Sinn in the morning too, as surgery was scheduled for two days after the party, so he'd been out most of the day. We got home to bed and he was out like a light. I woke him 6 hours later for his feed.

The surgery ended up being postponed, as Jensen had had a little cold and cough throughout the week, which escalated on the Sunday. So to be safe Dr Sinn cancelled it and mummy and Jensen had a recovery day in their pyjamas instead.

Thank you to all those that celebrated with us, we had such a wonderful time catching up with you all, and we're so pleased you have all had a chance to meet our beautiful little Jensen. Thank you for the beautiful gifts, which were very unexpected, and unnecessary. Now to get planning his first birthday......

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Father's Day

Last Sunday was Father's Day. Daddy had been looking forward to his first Father's Day for quite some time, even way before Jensen was even born. Needless to say, the pressure was on mummy to perform. And if I do say so myself, I think I did pretty well.

Daddy woke up to a happy boy bearing gifts, a personalised Star Wars themed T-shirt, and tickets to the V8s in December. We splashed out for our first Father's Day did Jensen and I, but from here on in he can only expect socks, undies, and personalised handkerchiefs.

When the occasion suits we like to go for a drive to Windsor for a picnic of fish 'n' chips. Turns out the weather wasn't too fabulous, but we still went ahead with the fish 'n' chips part. We met grandma and grandpa James there and had a little wander through the markets and massive sweet shop, where daddy was very excited to find some Cheesy Wotsits, a steal at $2.50 a bag rather than 20 pence as they are back in England. I'm not sure they even lasted the trip home!

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Going going gone....

Since my last post, a few things have happened....

It's official.....the oxygen tanks have been removed from our house. Jensen absolutely no longer requires any respiratory assistance. Yeehah!! Since this point we have been trying to ween ourselves off the Graseby monitor. First, I stopped taking it in the pram, then the car, then tried daytime sleeps without it (unless Jensen was sleeping on his tummy, which he loves so very much). Last night, after removing the lead for its weekly change, I posed the question..."what do you think about sleeping without Graseby tonight?", thinking if Phil was unsure we would strike that idea, but he seemed confident and keen, so sleep without the comfort of the Graseby we did. I thought we would be in for a night of no sleep, but it had been a little while since I had woken up to check the light was flashing anyhow, and surprisingly I slept ok, only waking once or twice wondering why I hadn't heard from our little bundle in a while. Since we have gone to demand feeding it can be 6 hours in between sqwarks. Last night he went to bed at 8pm, and didn't wake until 230am. We still have a while left on our hire of the monitor, so won't be returning it just yet, but last night we made a major progressive step into normalising our little boy.

Speaking of normalising, a quick visit to Dr Sinn yesterday, saw him announce that Jensen was almost a 'normal' little boy. Blood test results showed his Thyroxin levels to be perfect (probably due to his meds), his Calcium and Phosphate levels almost perfect. His weight gain of 240grams this week, has put him at 4.54kgs, we have ceased Poly-Joule, Daktarin, and Flixatide....and therefore his thrush has gone (thankfully, as he vomited every time I put the gel on his tongue). So that leaves us with Vitamin D, Iron, and Pentavite, all of which he will stay on until we start solids (which is only weeks away), a probiotic, and Thyroxin, which I believe he will be taking until he is 3 years old.

This massive weight gain can be attributed to a change in teat. We have moved on from the 0-3 months to 4-6 months teat. We tried this a month or so ago, but were met with chugs, splutters and mess. Now however, this has solved all our previous feeding problems. Jensen was rejecting his bottle after exactly 50 of his 100 mls. Out of pure exhaustion we now suppose, from having to suck so hard to get a drop of milk from a tiny hole. Feeding had become my worst nightmare, and most stressful part of my day, it was such a fight and would take so long. Now it's a favourite time, takes half the time and Jensen is feeding so much better, even trying to feed himself by holding the bottle. We just have to teach him to hold the actual bottle, not the teat!!

Aunty Mel are you sure I can't have a piece of your birthday cake?

This week we caught up with a couple of nurses, which was lovely. It's been a long while between visits, and it was nice to have a catch up outside of the NICU. Everyone can really tell the difference with him now, being so big, a crop of hair (just on the top of his head), and a face free of tubes.

In news that makes me nervous and unsettled, we have booked Jensen's hernia repair surgery. Dr Holland (the surgeon) had been waiting for the all clear from Dr Sinn, in regard to coming off oxygen etc. So I popped into his clinic to make an appointment with him, and instead he booked us in for surgery.....very soon! I asked for a date after the 12th which is the date of Jensen's welcome home party, so the 14th is what we got. It's just a day surgery, and hopefully won't require an overnight stay in hospital. The surgery will be done at Westmead children's hospital..... I never wanted to go back to that place.

We also have had to make another appointment to see Dr Smith, the ophthalmologist. The baby health nurse commented on Jensen's eye, so we are off to get it checked out again. One of his eyes is slightly turned and his eyes float around a lot before focussing. Hopefully with a few easy exercises this can be rectified, and hopefully no more surgery is required.

Over the last few weeks we have also had some nice little get to know you sessions with family overseas. We regularly video chat with grandma and grandad Jackson, my uncle Geoff and Bernice, and recently have chatted with great grandma Jackson, and cousin Tegan, for the first time. Jensen is also getting to know cousin Daisy, and I'm sure will soon be babbling away at her. Phil's brother and girlfriend, Matthew and Emma and sisters Sally and Gemma, gather round for a chat when visiting the folks, and we even had the whole Jackson family a couple of weeks ago. It's nice that even though we are so far apart, our lives don't have to be.

In the world of learning and development, little man is learning how to kiss. He goes in for the big open mouth pash with a bit of a lick too. Very, very cute, and very very sloppy. We are learning about our nose, how to clap and to reach out and grab things. Jensen is very good at grabbing mummy's hair, but we are aiming for more tangible objects such as rattles and the like. This week's aim is to familiarise ourselves with our knees, in order to help us to roll. Stay tuned folks....

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The day we've been waiting for.....

Today is day 3 of no oxygen.....yep, that's right, little man is in air with no respiratory assistance for the first time ever!! The download on Friday night was just perfect, so Jensen has had his prongs and tubing removed since then, and assuming he is still happy in air for another download sometime this week, the oxygen tanks will be collected and removed for good. Yay!!!! We've all been waiting for this day for so long, we are so proud of our little man, and he seems quite happy with himself too. Thinking back to when he was just initiating breaths, and having the ventilator finish them for him, to see him now doing it all on his own is an amazing achievement in such a short time. We were initially looking at being on oxygen for a lot longer, so our little super star has just amazed everyone he knows once again.

Now that we can see our handsome boy's face unobstructed for the first time ever, we've been showering his bare cheeks with kisses. We've danced around the house in twirls without tangles, gone out on to the balcony without restriction, passed him to each other without getting caught in tubing, and gone for a walk minus the 5kg backpack. It only took us minutes to leave the house, and we were able to take turns pushing the pram, heck, today we even enjoyed a coffee at a café with outdoor heating...something we've had to avoid having a flammable tank on our back....it's these little things of everyday life taken for granted, that are our little treasures. We don't have inquisitive stares any longer, we just blend. Not that I have ever been one to blend, but in this instance, it's been a long term wish.

On top of this good news, Jensen also reached the 4kg mark. Actually he's had quite the growth spurt, growing 6 cm in a week! This means he is less of a worry to the doctors, and much more robust. It also means that we can move on to demand feeding again, and let the little man sleep for longer stints (and mummy and daddy). We still have to keep track of his supplements and meds, but have now scheduled them to feeds rather than a time.

I think that's enough exciting news for one post, so will keep you updated with our little star's progress as the weeks go by.

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6 months old

As of last Sunday, little chap is 6 months old. We celebrated with some Jensen sized cupcakes and a photo session. Of course he looks nothing like a 6 month old, more like a 6 week old, bless him.

Since my last post we have had quite a bit of progress in the oxygen department. Three weeks ago we did a download in 50 mls which was perfect, and after two weeks in 50mls, did a download in 30mls which was also perfect. Doctor Sinn attributes this to the new medication Jensen is taking in the form of Flixatide, a steroid medication mainly used by asthmatics. Another week later we did a download in 20mls, neither Phil nor I were hugely confident, but the results were so good, Dr Sinn had us do another, the next night in air.....In AIR!!!! We decided to keep his nasal prongs in, should he require oxygen in the wee hours, we didn't want to face the battle of re-taping the prongs to his face. Unbeknownst to me, this meant his breathing was similar to that of breathing through a straw :(. What a terrible mother I am, the poor little chap. Nonetheless, his download was very good, but as Jensen hadn't put on much weight this week, Dr Sinn decided to keep him on oxygen for now. This will help with his weight gain, and also give him more energy. Anyhow, it won't be for too much longer that we're dragging a bottle of air around on our backs.

Little man now weighs 3.85kgs (8.5 pounds) and until this week has been putting on weight steadily. Last fortnight he gained almost half a kilo. This week his tongue is bothering him (a result of new medication) and hadn't been feeding to his full potential. Also this week has marked a milestone in that Jensen has now outgrown his tiny baby (00000) outfits and is fitting nicely into newborn size (0000). So yay!

I did a backflip on my decision about Mother's group and went along last week and again today. It was a very large group of mothers and babies which I found a bit overwhelming. After today I feel much better about going, but last week I felt quite emotional overhearing birth stories and 'hard' four hour labour stories, and seeing all these bouncing babies just casually latching on to their mother's breast. Particularly so when it was our turn to introduce ourselves. All the babies are aged between 4 and 7 weeks, with Jensen at 10 weeks corrected being the oldest...and the smallest by the looks of it. It came to my turn...."Hi, I'm Belinda, and this is Jensen. Jensen was born at 23 weeks, so he is 6 months old". I couldn't look at anyone while I spoke, I didn't want to see anyone's face. Afterwards, I'm sure there were many questions, too polite to be asked. Today some of those questions were asked, and today I was happy to answer them.

Last week when popping into the hospital to pick up the download machine, we decided to pop into Intensive Care to say hello. At first I was just going to discreetly say hi to a couple of nurses, but our presence was soon discovered and we were swiftly mobbed by a swarm of nurses, very keen for cuddles. It's been a long time since the intensive care nurses have seen Jensen. Besides the day we were discharged, it would have been late April, when we made the move over to High Dependency, since many of them had seen our little man. He's grown so much since then. We were smothered from all directions with kisses, hugs, can I have a cuddles? and teary eyes. Most comments were how big, alert and gorgeous Jensen was, and also how much he looks like his daddy, and has his calm and placid nature....no compliments for mummy then..., actually there were a few of those thrown in too. It was lovely to catch up with them all and we may well duck in for a visit again soon.

This weekend we are starting Music therapy, something Dr Sinn has recommended highly, in fact he has organised a special class for the three babies home from the NICU on oxygen, Jensen and his two little friends Andre and Arnold, who have recently been discharged from hospital. The medical staff are doing a research trial in the NICU with music therapy and pain management in preemies. It's in its infancy, but has already seen oxygen requirements decrease in babies participating in the music trial. It's also known to help brain development, so we have decided to give it a go. However, daddy is not too keen on frolicking around the room to the beat with the babies.

We are currently in the planning stages of Jensen's welcome home party, which we are very excited about. We've booked a date and a venue and mummy and her minions are busy planning the décor. Can't wait to celebrate our beautiful miracle baby with all that we love.

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A month at home

Today I am going to write a blog. I've said this to myself every morning for the past 7, 8, or 12 days. But here I am, writing a blog.....finally!

So since my last blog, I'm pleased to report that Jensen and I have been on many an outing. Once the rained cleared, we set off with our backpack of oxygen (at a slight weight of 5kgs), pram, apnoea monitor, raincoat (one for the pram, and one for me and the oxygen). We mainly go for a walk, but occasionally drop by the shop to grab a few things. I'm so nervous though, so we don't spend long out, plus it takes us so long to get organised and out, the window of opportunity narrows quickly. Jensen loves being out in the pram, he tends to sleep the whole time we are out, waking up as we turn into our street, the little monkey.

We've also been out in the car, through necessity however, but nonetheless, I have driven with him in the back and me in the driver seat (I usually sit next to him while Phil drives). I've been wearing my Hug-a-Bub carrier in the car and popping him in when we get to our destination, after heaving the oxygen tank onto my back, attaching the apnoea monitor to my wrist, and finding some space on my shoulder for our bag. Needless to say, some days it's just easier to stay in.

Me and my first friend, Valentina

So we have had a few follow up appointments, all of which have gone well. We've been to see the Endocrinologist, the Paediatrician, the Ophthalmologist, and popped into the NICU for a quick hello with the nurses (we even bumped into Jensen's first little friend, and neighbour Valentina). Dr Smith is very happy with Jensen's eyes, at this point no follow up surgery is needed, and he doesn't even appear to be short sighted yet. There is a small chance, as I've mentioned before of needing glasses, being cross-eyed, or having a turned eye, all of which looks good at the moment. Actually just a week before our appointment, and bang on time developmentally, little Jensen started focusing on faces and looking into our eyes. I just can't wait until his more interactive.....he's been around so long, I feel like he should have been a long time ago.

Jensen is doing very well in the growing department. He is now 46cms long, and weighs just over 3kgs. I'm not sure why he is putting on so much more weight here at home than in the hospital. Another thing he does a lot more of at home than in hospital is cry. Not sure why really, just think he likes cuddles, and also needs to let fluffy off the chain. In the night, I can here him getting his wombat on (ugh, ugh ,ugh, scratches around like a wombat), little (or sometimes big) fart noise (sometimes from either side of me :/) then silence and asleep again. Men really are simple creatures aren't they....

Now due to the large increase in the child, the mumma has had trouble keeping up with the child's milk intake, so has had to enlist the help of one feed of formula. This was quite a concern for me as Jensen has been known to have issues previously with a formula like substance, but Dr Sinn ensures us it is safe for him to have. I have been quite upset about all this. For one, not being able to produce enough milk for my son, another that he couldn't even tell the difference, and swiftly gulped down a bottle of milk, not made by mummy. I am slowly getting used to it though, and it has taken the pressure off me and my expressing a little.

We've had many a visitor over the past few weeks, with lots of special first cuddles.

This week marks our first week out in the big wide community as we are no longer part of the NICU. At first, a feeling of vulnerability waved over me as questions flew through my head, and out of my mouth at the nurse sitting on my couch, for the last time. What do we do? Who do we call? What if this? What if that?. I have since calmed down, and understand I will have to just become my rational and sensible self if or when the time comes. We are still linked somewhat, as Jensen is still on oxygen and we have fortnightly downloads organised via the special care unit of the NICU. We have one this coming Friday actually, in 50mls, so we are hoping his oxygen will then be lowered to 50mls. But for now, we have the early childhood nurse visiting us for a couple of weeks. She seems a nice lady, no NICU nurse though, tears in her eyes hearing our story, asking loads of questions, some reasonable, some a little strange. Would I like to be part of a mothers group? Hmmmm, would I like to be part of a mothers group??? I don't think so. A group of mothers I would more than likely have trouble relating to with babies between 2 and 6 weeks old. How could we fit in? How would Jensen compare to those babies, on one hand he's so much more advanced, on the other he's on par or perhaps behind a little. When all those babies are having their birthdays within 4 weeks of each other, Jensen's will have been 6 months ago. I think the best thing for us for now (or in the future) is to go along to the Miracle Babies foundation playgroup. Here all babies have been part of a NICU, must be healthy, and not have any poorly siblings. This sounds more suitable, although I am very aware of not wanting Jensen's existence to be all about his prematurity, I don't want this to define who he is, or affect him in any way socially, emotionally or academically, but for now it suits us.

In my new bed

On Friday this week, Jensen will have been out as long as he was in. He will be 23 weeks and 4 days.

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Let me out!!

I've been trying to write a blog for days now, but I have found myself consumed by feeding, washing, and cuddling, and each spare minute sorting something out in preparation for little man's furniture arrival on Wednesday, or to be honest, just staring at him.

We have all settled in nicely here at home. Phil has returned to work, and we have established another new routine for now. Daddy goes to bed early and gets up for the midnight feed, while mummy does the 3am and 6am ones. Daddy goes off to work and usually mummy and Jensen go back to bed for an hour. I've found if I can get this extra hour in the morning, I'm right for the rest of the day. Having said that, nurse Carmel is visiting tomorrow and the likelihood of returning to four hourly feeds is very high. This would be because we have a little porker in the house (complete with snort and all at the moment). Last week he put on 300 grams, so now weighs 2.61 kgs. He is having to be woken for feeds, so expect he'll do well with fourth hourly on demand.....This also means more sleep, and earlier nights for mummy and daddy!

I've been enjoying being at home and getting my bake on, which most of you all know how much I love doing. I've also been cooking more and got the old slow cooker out. Here's a picture of what I had going in the slow cooker earlier this week.

hehe, isn't he delicious??

Last Sunday, we all went for a little walk. It was a lovely sunny winter's day, and I commented to Phil that it'd be nice if the weather was like this all winter, I'd get out for a walk everyday, searching for my lost fitness, and just enjoy being out in the fresh air, after most of the year hibernating inside a hospital. It has rained everyday since. We've been housebound, as I'm not keen on trudging through the rain, with a pram I'm unfamiliar with and a heavy oxygen tank on my back. By Friday there was a spot of clear in the sky, so we swapped our tanks and headed out the door. This is no easy task as being connected to the pram via the oxygen tube makes manoeuvring quite tricky. I felt nervous, every minute I was out. If someone moved quickly toward or past me, I thought they were going to steal Jensen. I ate my lunch so quickly I gave myself indigestion as I thought if we were still for too long someone would see how cute and little he is and want to touch him. I almost gave myself a nervous breakdown. Clearly more practice is necessary, and the sunny forecast for next week appears to be the perfect time to build my outing confidence. Will keep you posted....

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