So this is the week we had been waiting for, we finally got Alexander home and he got to meet his big sister and get use to his new surroundings. It was very emotional leaving our second family in Holles St, but to finally take your child home, when you wonder when it will happen is great.
On Tuesday we got the all clear and when Laura came home from the crèche, her little brother was there to greet her. Laura has adapted well and sometimes peers into the pram just to check on him. Being honest we were all doing that and it was so nice to be able to do so at anytime.
We had our first little outing as a family on Wednesday morning and it was nice to be a ‘normal’ family and we’ve had a few other little trips, one to Temple St where Alexander’s ROP continues to improve.
I still can’t believe we have Alexander home, it hasn’t fully sunk in. Those early days are slowly fading away as the routine of living in the now with feeds, naps, etc. are taking over.
Finally, as the first chapter of Alexander’s little life closes, the goals and milestones have changed so no more weekly updates but more ad hoc posts, but I hope to continue so I can share this with Alexander when he’s old.
Alexander is now 3 months old and what a 3 months it’s been. Last Sunday after 77 days, Alexander got off high flow and didn’t go back. He is breathing on his own even during feeds. This allowed him to graduate to the Special Care Unit on Monday. This is a momentous milestone for us as it was one of the last steps in getting him home. The other was being able to feed without the need of a tube. This he decided this for himself on Wednesday by pulling out his feeding tube. All of this means that we are due to take Alexander home on Tuesday!!!!!!
Alexander is a good humoured little fellow which is just as well as his caffeine was stopped on Sunday as well, unlike his Dad who needs a daily caffeine fix, Alexander won’t be having it for a long time to come. In case you are wondering why he was getting ‘expresso shots’, it’s because it helps young preemies to remember to breath and reduce down apneas. Thankfully apart from a few worries early in the week he didn’t mind caffeine withdrawal.
As a follow up to his eye surgery, he had checks on Tuesday and Friday and the signs are the laser treatment helped, but next Friday sees us off to Temple St, for the first time, to continue the follow up with the amazing Prof. O’Keefe.
In perpetration for leaving, other tests were done, another head CT ( clear) and X-rays (kidneys need to be checked in a few months), but overall a clean bill of health.
However all of the above is just noise around the big event – on Tuesday we will be a proper family.
Today has been tough, Alexander had an eye test this morning, his second, and it showed up he has Retinopathy of Prematurity (ROP). While many preemies get it, it’s still something you hope doesn’t impact on your child.
This morning Alexander got eye drops for his exam and the consultant visited at 6am. My morning check-in call to ICU told me the news I hoped I wouldn’t have to hear that Alexander was going to have an operation on both his eyes later today. Just before noon, Katherine and I got to meet the consultant and then the operation took place, lasting about an hour.
Post operation we managed to talk to the consultant and both eyes needed laser treatment as the ROP is aggressive.
It was soul destroying to see Alexander getting prepped this morning with a morphine drip and seeing him pre-operation in the first tiny baby grow katherine bought, but it was even worse post op when we saw his bruised and battered little eyes. We stayed with him all afternoon as he had countless Bradys and Desats. We, fortunately, have never seen as many before and while it related to the morphine he received, it still was challenging every time the alarm went off. It’s the first time I’ve been looking at Alexander’s monitor and not him since the early days / weeks in ICU1. To top it off he had to go back on CPAP but hopefully it will only be for a day.
If earlier in the week provided emotional highs, today really brought me crashing back to earth.
There will be a review next Tuesday and hopefully we’ll get good news but in the meantime all we can do is wait and hope that Alexander won’t have to go through this again and that his eyesight is ok.
The last 24 hours with Alexander have been very emotional, more so than the last few weeks if I’m being honest. While Alexander is physically closest to the door to go to Special Care, it seemed like it would take for ever for him to get there, he was still bring tube fed, in an incubator and on high-flow. While he’s certainly not there yet, progress in the last 24 has, in my mind, been remarkable but I suppose as Alexander’s dad you would expect me to say that.
Friends and family who follow me on Twitter (@collumbo) and Facebook would already have seen these two pictures, but I think they sum up why I did have to wipe a tear from my eye a few times.
In A Cot
There is still a way to go, Alexander is still on oxygen, but in the last 24 hours I have seen a glimpse of normality and I like it.
Alexander is now 77 days old and is edging closer to leaving, I am preparing mentally for the next phase in our journey as a family even though I know there are still a lot of things that need to happen before Alexander is ready for home, however if any week summed up my life at the minute it’s this past one.
As I mentioned last week, Alexander started taking a bottle, 25ml of total feed at first and he has progressed. On Monday, I got to feed Alexander and over the course of the week he continued to take some of his feeds with a bottle.
First Feed With Dada
Alexander, after 72 days, moved from an incubator to a cot. This is amazing for us as it means it’s easier to see, touch and cuddle our little boy. In addition, Alexander can now have more than just a nappy on and it’s that one step closer to normality.
In a Cot & looking Cute
Last time Alexander came off oxygen it wasn’t a complete success – he decided to make a fuss during rounds and needed CPR. This time he started off slowly midweek with a trial but this was suspended as Thursday was rough for Alexander.
Preemie babies like Alexander can have something called Retinopathy of Prematurity (ROP), and as a result he needs routine tests on his eyes. This week Alexander had his second test and as he had aggressive ROP, he had laser surgery on both eyes. This lead to a rough day for him with lots of desats, some Bradys and going back on CPAP for 24 hrs. There will be another review on Tuesday so here’s hoping.
Alexander – Week 11
As I finish writing this, Alexander is getting back to his ‘old’ self, he is spending a lot of time off oxygen, on full feeds and has broken the 2kg mark! Looking back, this is another typical week with the associated highs and lows as well as wondering (worrying) what will happen next week.
Happy Easter to one and all. Yesterday morning I went on an Easter Egg hunt for Barnardos Ireland with Laura right beside the hospital. Laura had a blast and I’m looking forward to seeing both Laura and Alexander go next year. However, it was tinged with sadness as Laura was so close to Alexander but still couldn’t go and see him.
Alexander – week 10
On Friday morning Alexander had his first bottle feed, he took 25ml and had a big burp afterwards! Sadly neither Katherine or I were there for it but I’m looking forward to being able to feed him in the near future. The team are starting slowly so most of the feeds are still via tube but so far he has tolerated his few bottle feeds. It’s an important step for Alexander as he needs to be on the bottle before he can move to special care. The feeding pattern has also changed as Alexander was weened down from 8 to 7 and he is now on 6 feeds a day so it’s every four hours, not sure Alexander likes waiting that extra hour however!
Also during the week, Alexander finally found his voice, it was while he was waiting for his feed and I heard a little cry. Amidst all the bings and bongs, blips and beeps we are used to in ICU, it truly was a beautiful and emotional sound.
On the downside, the poor mite, had his seventh blood transfusion as his haemoglobin fell to 8.5, no surprise as from about Wednesday onwards he was looking a bit peaky. The team hoped he could create the iron himself, but he can’t do it just yet so on Saturday he had the transfusion. It’s always tough to see that IV in his little hand, I think it’s one of cruelest things I have to see as not only is there the IV but feeds have to be suspended. Even at this, his seventh transfusion, I get very emotional even though I know it’s a necessary evil.
Flaked Out during Cuddles
In the early days with Alexander there was always a sense of helplessness as I struggled to come to terms with have a preemie, the roles of everybody and everything in ICU and the fact that all I could do was peer through a Perspex glass fogged up with the humidity and UV light.
These days, it’s a bit easier – I can change nappies (sometimes successfully), feed Alexander and I feel more confident talking to the staff about care. However there is still a bit of helplessness around as I still can’t do all the things a dad does with their newborn, nor will it be as straightforward when we get Alexander out.
One area in particular where it can be tough is that of kangaroo care or basic cuddles. With Laura this only barrier to a cuddle is her ability to say her new favourite word ‘no’ and to run in the opposite direction. Alexander can’t run from me (yet) but to cuddle him means he can be just after a feed (might desat), be too tired (based on his day) and his busy the nurses are. Once all those things align – and sometimes they don’t – I get to hold my baby. As I’ve said before, I get a great calmness from doing that, but sometimes you feel helpless when you can’t do the little, normal, things.
Military Operation but So Worth It