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.
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
The last seven days have again shown what an emotional roller coaster having a preemie can be. Alexander had a set back early in the week but little fighter that he is, was stronger later in the week.
Alexander – Week 9
After the progress of last week, we were brought crashing back down this week. On Monday Alexander went back on CPAP, got put on antibiotics and was being fed through an IV drip. Thankfully after all the tests it was just because we had asked the little fellow to do too much too soon. He just got tired after two days of low-flow. However it did remind us that Alexander is still a tiny baby who has a journey to go. Later on the week High-Flow was returned and the constant battle keeping the prongs in!
Back on High-Flow and after a bath
I am trying to live in the moment and enjoy our very active baba and kangaroo care. On Thursday night when I was in, Alexander was awake for about 45?mins between his weigh-in and feed. It was great to see him so alert and responsive, and really gripping my finger.
What was really positive, apart from going back to high-flow relatively quickly was that Alexander’s care team have been outlining next steps in terms of classes we need to take to prepare for him coming home. While it’s not going to be today or tomorrow we now have Alexander’s check list, times of CPR classes, etc. To be honest while I can’t wait to get Alexander home, I know I’m going to be so nervous.
Hopefully this next week will continue to see Alexander make slow and steady progress.
It’s been another busy week for Alexander and us! It seems that every week when I write this I am able to share something new and positive and happily for us it’s been a pretty good week for Alexander.
The week did start on a bit of a down note as Alexander’s hemoglobin was low so another blood transfusion was needed. While it’s nothing serious an it’s likely he’ll have more before he leaves the hospital, it’s tough to see your baby with a line in his tiny hand. However the extra boost of blood seemed to spur Alexander on for the week as he hit a few milestones.
Firstly, on Tuesday, Alexander was put on High-Flow from CPAP, while he was still getting high pressure air it was now by nasal prong. While medically it’s not a huge milestone, but an important one none the less, it means so much to me as a Dad. With Alexander being on high-flow not only could I see his face without hats, masks and the like but when I had him for kangaroo care, I could kiss his forehead – something I hadn’t been able to do before. The only downside was Alexander kept taking the prongs out keeping the nurses on their toes!
On Wednesday Alexander graduated from ICU1 to ICU2. The great thing is that the doctors and nurses in ICU1 and ICU2 are the same so the care team doesn’t really change. Alexander only moved 50 meters but it seems much more to me and while it was tough to leave some of Alexander’s pals in ICU1 he’s caught up with others in ICU2. The other thing is that I can start to see him coming home, he’s that little closer.
If all that wasn’t enough on Saturday Alexander moved from high-flow oxygen to low-flow. While he might get tired and go back on high-flow, it’s a another big step as it’s means he’s once step closer to being able to breath on his own.
Alexander – Week 8 on LowFlow
While it seems like I’m Posting daily updates, it’s been a busy 24 hours. Alexander was moved from ICU1 to ICU2 today.
In English this means that he had gone from NICU (neonatal intensive care unit) to HDU (high dependency unit)
Settling into new home