Having a prem was very challenging but thankfully one of the supports was Irish Premature Babies. They are a voluntary organisation so to help, I’ve decieded to jump out of a plane – something some of my friends wished a did a while ago!
http://www.mycharity.ie/event/richard_collumbs_event
Not to play the emotional card, but here is who I’m doing this for!
Since Alexander came home from Holles St I haven’t posted anything on the blog. Partly because I wanted to move on and treat Alexander like a normal baby and partly because I just wanted to forget about the time in NICU. It’s not a reflection on Holles St and the great staff but just I needed to move on. That being said I still write a blog, it’s just that only Alexander and I will read it when the time is right.
Just over one year on and having Alexander home is great but of course there are still check-ups and the worries I have as his Dad. Still when Alexander was born I couldn’t imagine singing happy birthday on his first birthday.
I’m going to try and post a bit more here if I can get away from changing nappies, feeding and getting Alexander to nap – all the normal things you do with a baby & I can’t ask for more than that!
The WordPress.com stats helper monkeys prepared a 2014 annual report for this blog.
Here’s an excerpt:
A New York City subway train holds 1,200 people. This blog was viewed about 5,900 times in 2014. If it were a NYC subway train, it would take about 5 trips to carry that many people.
So today is Father’s Day and while I know it’s just a ruse to sell cards and crap, it does give me a warm glow as I still can’t believe at times I’m a dad responsible for the well-being and development of Laura and Alexander. And there’s the rub, on a daily basis I can be the dad I want to be, or at least try to be with Laura, but not for Alexander.
The life of a Dad who has a baby in ICU is so different to the one with Laura. Laura gets cuddles on demand, Laura laughs when I make silly faces and Laura gets upset if I have to say no to her. With Alexander its comfort holds and recently very few cuddles as he is back on the ventilator.
The ten days between Holles St and Crumlin when he was home is when I felt we were a ‘proper’ family and I was a ‘proper’ Dad. Don’t get me wrong, I am so proud to be Alexander’s dad and what a brave little fighter he is but at the moment I’m not there for him in the way I want to be, nor can I be, I’m not a doctor so all I can do is watch and ask questions.
I know we’ll get Alexander home again soon and I know that at the moment he’s in the best place – but I still would like to have had us all sharing today together, but I guess we’ll have to wait another day for that.
What I Wish For Most
It’s little over four weeks since Alexander left Holles St (and indeed since I updated on his progress) and like a lot of things with preemies, not everything went according to plan.
Alexander at Home
Getting Alexander home was amazing, just being able to look at him and hold him anytime he needed was great. I took two weeks off and it was nice to be able to hang out as a complete family. Laura took a few days to get use to her little brother but was happily getting him his hat and soother as needed, as well as proudly saying ‘baba’. We even did a few family trips and a few with Alexander when Laura was in the crèche.
Alexander got into a routine quickly and kept his 4 hourly feeds from Holles St more or less but feeding him on demand as well. The rhythmic click of his apnea monitor was re-assuring rather than bring worry some.
And of course I could do this…
Crumlin
On Alexander’s tenth day and after a good eye test in Temple St, Alexander had a series of Apneas and went blue enough times that we went to Crumlin. Alexander got a bronchial infection that made it harder to breath and hence the need to go into Crumlin.
The upshot of this is three weeks later he’s still in ICU and as I write is trying his third time off the ventilator and on CPAP. Unfortunately once the infection cleared Alexander’s upper right lung is still causing problems so he is back requiring air.
I really had thought that I had seen the last of ventilators and the military planning needed to give Alexander a cuddle. I thought, the toughest part of the road was over and hospital visits, would, in the main, be kept to out-patients. So when days become weeks, it can be hard not to think when will this end and that brief glimpse of normality returns.
Crumlin is a very different type of hospital to Holles St, it’s vast by comparison and the teams of staff make it appear much more impersonal when Alexander was first admitted. When he was in the A&E there were 9 people at one stage crowded around him. The staff, like those in Holles St, are dedicated, but I’d be lying if I didn’t find the smaller, tighter knit community of Holles St a bit easier to take.
Combined with this I went back to work a few days after Alexander was admitted which increased my guilt, even though stilling around in an ICU isn’t always the most productive for Alexander when he needs his rest.
Other Progress
On a positive note, Alexander continues to grow and is now out of his smallest babygrows. His personality is shining through and one thing we do know is that he gets his point across when he’s not happy and especially when he wants food.
Also during this time, Alexander passed his due date so his corrected age has finally got into plus territory and he’s considered an exprem!
I had hoped that my updates would be more about the routine and typical dad stories about getting peed on, but for now I’m still an ICU dad, all be it in a different hospital.
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.
After 87 days in Hollis St, we got to bring Alexander home.
Words cannot express my gratitude for all the support that the staff in ICU1, ICU2, Special Care and around the hospital have provided since we found out Katherine was pregnant. We are forever in your debt.
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.
So today was my first business trip away since before Katherine was put on bed rest. Thankfully it was only a day trip to Manchester and I got back to spend the evening with Alexander.
I wasn’t that worried when I booked the trip a week ago but then after the laser surgery, I thought I wouldn’t be going, but in the end as Alexander is now on no oxygen support, I knew I could slip away for a few hours.
Of course when I did see Alexander on Monday, I was in for a shock as on day 79 he has moved to Special Care!!!! That’s right my little boy is in the last room before he comes home.
Where Have You Been?
I know that with work there will be a few more trips once Alexander gets out but at least with FaceTime, Skype and countless pictures on the phone, he’ll always be close.
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.
Alexander's Progress 