After our last visit with Dr Smith, he was keen to go ahead and book in Jensen's eye surgery. His reasoning was that now he has equal vision in both of his eyes, and as he is coming up to turning two years old (yikes!) it was a good time to operate. As Jensen has a bilateral squint, the surgery is often more successful than if he only had one eye that turned in, as the one eye is more dominant and sends no messages to the brain, whereas Jensen's both turn in and both send messages to his brain, but only uses one at a time. The surgery won't improve his vision in regard to his acuity scores (e.g 6/90) but it will give him a wider scope of vision. If you cover one of your eyes with your hand, and then remove it, I believe this will be the difference Jensen will notice. For this reason, we went ahead with the surgery.
We arrived at Westmead childrens hospital, a place we vowed never to return, on the afternoon of the 25th November. Surgery was booked in for around 4:30pm, so little scrappy had to fast from 9am. He was asking for bikkies on the way there, using his best manners and all bless him. The surgery took just over an hour, and Dr Smith was very happy with the outcome. Without going in to too much gory detail, and to prevent me from puking on my screen I'll limit the details, but essentially the muscles in both eyes were cut, tightened, then stitched in place. The eyes can take up to six weeks to align, and clear up again, however Jensen's look pretty bang on. They were very red for a couple of days where he looked like a devil child, but Dr smith says he couldn't be happier. The stitches may take up to 6 months to dissolve and when you look closely (which I try not to), when he is looking to the side, you can see a little blue dot, which is the stitch. Most people don't wish to open their eyes for up to a week after this surgery as it feels quite grainy, like they have sand in their eyes. After a groggy moment of delirium coming out of the anaesthetic, and sculling a large amount of milk, Jensen and his peepers were wide awake. The surgery was late in the afternoon, so little scrap was starving. I fed him so much breakfast he later vomited, so clearly didn't have worry about him have any food in his stomach during surgery. Because of the lateness of it all, and because day surgery is only open until 8pm, we were admitted for the night as Jensen needed a waft of oxygen here and there, and had a few Brady cardias through the evening. This caused the nurses to do an ecg at 3am to check all was good. Needless to say mummy didn't get any sleep and the sound of all the machines beeping brought back many unwanted memories, so we were keen to get out of there asap. Of course on paper Jensen's medical history doesn't look good, so as day surgery staff aren't around on the weekend, nor are the opthamology team we had to wait for clearance to leave from another doctor. At Westmead, they won't discharge you if your oxygen level is under 95, Jensen was at 94, and as he came in at 98 they wanted him to leave at 98. I even called Dr Sinn to see if he could get us discharged, all the while Jensen was tearing up and down the halls of the ward disturbing everyone's peace. Anyhow, long story short, we were finally discharged around 4pm, unwashed, starving and exhausted we all arrived home, washed, ate, and went to bed. Thank goodness it's over, and hopefully there'll be no more.
A few weeks later we made our annual journey down south for an early Christmas celebration with the James family. We always have a lovely weekend away and enjoy a relaxing weekend in a sleepy coastal town. This year we met a bunch of new additions to the family with some new little cousins for us all. At the moment Jensen is the only one mobile, which meant I didn't get much of a sit down, but next year I think a big gate will be necessary to keep all those little legs in tow.
We hosted Christmas this year, which was great being a home and having everyone over. It meant Jensen could have a nice sleep after a fun morning of ripping open gifts in a production line manner, and then have fun with everyone at home. I found him sneakily ripping open presents in the lounge (meant for later) while I was busy in the kitchen, he'd had so much fun in the morning and the lead up to Christmas, present opening became his new favourite past time, and as you can imagine our place looked like a toy shop afterwards. Daddy took a couple of days off over the Christmas period, so we had a few little outings to the zoo and the beach. As is has been so stifling hot this summer, the beach has been a big hit with Jensen this year.
We celebrated Jensen's 2nd birthday with a few friends and family at our house this year. Once again Jensen had a ball opening his gifts and running around the garden with his friends. With his second birthday looming I felt like all the events of the last two years hit me hard. I can't say why now, but I guess with his first birthday it was a massive milestone and something we had looked forward to, to help us get through our time in hospital. Then of course all the other developmental milestones we've reached for and surgeries etc in between. I guess it's because now to look at him, he's a regular little boy, a robust 2 year old, full of life, energy and an enquiring mind. Perhaps now it's a sense of relief for getting him to where he is, that my mind is now allowing itself to process all the goings on of the past two years. I often have flashbacks of the night he was born, conversations with doctors, the what ifs?, remembering the feelings, smells, sounds, the enormity of it all. Which I guessed I hadn't quite realised until now. What we as parents have had to go through in the short time we have been parents, and I have become extremely emotional, not far from tears given the right words or thoughts. All this, I'm told is totally normal, as parents going through the NICU are at high risk of PTSD. I believe, however that my mind is just coming to terms with all that we've experienced, the anxiety of it all, now that we are quite a distance from the danger that was, and we have such a beautiful, well developed little boy that I could stare at all day and think just how lucky we are.
Jensen had his annual vision assessment with Vision Australia in February and passed with flying colours. He is well within the range for his corrected age. The outcome of the assessment was 6/7.5 with his right eye and 6/12 in his left. Using both together he measured 6/6 which is 20/20 vision. Of course these tests were done in optimal conditions with good lighting, no distractions etc, but nonetheless a vast
improvement overall, and an outcome we could only wish for. The method of testing overestimates visual acuity, but until he can read the letters on a optometrist's chart this is how it'll be measured. Of course there is still the issue of peripheral vision, which we won't know the extent of until he's 7 or 8 and can follow explicit instructions. There are also other aspects like contrast, depth perception etc which he may be limited, so we are still making sure he has good lighting, reduce glare, and improve contrast for him to help him see as well as possible. So overall Jensen is now said to have near normal vision, and therefore now doesn't qualify for any assistance from Vision Australia. He will, however still have vision assesments annually, but we have said goodbye for now to our OT Rochelle....
Our next chapter is speech therapy. At first I was very upset that a couple of people had recommended Jensen have his speech assessed. I just wanted him to be left alone to be a two year old. After my initial reluctance, we made an appointment with a lovely speechy highly recommended by Rochelle. She, like Rochelle, visits us at home monthly and says Jensen is within the range for his corrected age. He has a vast knowledge of nouns and good vocabulary (thanks to his love of books and interest in the world) yet can be a little hard to understand to those that don't know him. He needs to work on his verbs, so we are practicing those with him. At the moment Jensen's most used words are mumma and daddy. He gets into bed with us in the morning for cuddles and points to me saying mumma then to Phil saying Daddy....this goes on back and forth for quite sometime. He also showers us with little kisses, and has started kissing visitors on the cheek goodbye, very cute.
Jensen has started at Little Kickers, a soccer training/familiarisation lesson on a Saturday morning with daddy. The class is for 18 months - 2 1/2 year olds, so as you can imagine it can be a chaotic mess of less darting every which way, wasted instructions, and defiance. Jensen however, has learnt a few skills in amongst this and is a good little kicker. We are still doing well with Gymbaroo too, and plan on continuing throughout winter (brave mummy's baby steps).
With Jensen's upcoming corrected birthday in May, we have a lot of appointments. We have a two year check with the NICU follow up program, where he will be assessed once again by Dr Bowen, the Doctor in attendance at Jensen's birth. I'm looking forward to this, and getting some solid advice from the doctor in regard to his development and needs, as I've had some conflicting advice from certain professionals which has left me confused and upset at times, and also to see how astounded she will be with his progress (as she was last time). We also have a visit with Dr Smith next week, to test vision post-surgery, physio and OT assessments, and speech therapy.
We recently attended the NICU Easter party, which was lovely to catch up with some of the nurses and doctors. Jensen seemed to be one of the biggest there, and so many were tiny. It's sad to see so many babies there that have needed care, but so great that they have all had access to such wonderful medical care and expertise. Invitations are only sent to those that stayed in the NICU for more than 28 days. Unlike last year's party, Jensen was very mobile, keeping mummy busy chasing him, stopping him from pulling decorations down and stealing all the food. He was very happy to get a Peppa Pig balloon, and mummy was happy to win the Easter raffle. We finally got all our money together from donations, gifts etc and gave the NICU a cheque for $1000. The money will be put towards the painting of a mural on the walls of the NICU, in order to make it look less hospital like, and to give something for parents to stare into. They have made a few changes recently including some pictures of previous residents of the NICU. Jensen's is the first one you see, and I plan on taking up a recent photo of him to place next to all the ones of him in the hospital.
We've recently just returned from a lovely family break on the central Coast. We had stunning weather for this time of year, so made the most of the sunshine and spent a lot of time of the beach. Jensen had his first little Easter egg hunt, which was very cute, and enjoyed sleeping in his bed at the foot of mummy and daddy's, waiting patiently for someone to move, then saying mummy? Daddy? Mummy? Daddy? He's at such a cute stage at the moment, following instructions, interpreting them his own way, articulating his world, and random displays of crazy clown behaviour. He's such a delight....apart from the tantrums that started last week! Hmmph, and bang on time with his corrected age too!
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