Arlo is 17 days old today (27+4 corrected) and currently weighs 845g/1lb13oz.
He’s had a rocky couple of days and unfortunately had to go back on the ventilator Wednesday as he was tired, not tolerating feeds, and kept having desats and bradys. He has a large pda (heart murmur due to an open valve) that has failed to close with medication, this causes low oxygen saturation and difficultly managing feeds amongst other things so he’d done very well to manage on bipap up to this point.
The next day his kidney function had dropped so much he stopped passing urine and swelled up like a balloon so was started on medication to improve his kidney function. This has thankfully worked and he waited until I opened his nappy yesterday to pee everywhere, which we were all ridiculously excited about and even a passing Dr cheered 😄
He had a blood transfusion yesterday (3rd of many, very normal for a micro prem apparently) and following a stop/start couple of weeks with feeds is currently tolerating the most milk he’s ever managed at 1.8ml an hour. And Sammy is now a total pro at tube feeding 🏆
Plan for today is EXTUBATION off the vent back onto bipap! I’m not sure what time they’re attempting it but please keep your fingers crossed for him. Will hopefully update with good news later 😊
Today is Daddy’s 29th Birthday. Seems the excitement proved too much for Arlo. He had to be intubated this morning.
The ibuprofen has done a bit of a number on Arlo it seems. As well has bleeding from his stomach, it’s also caused a grade 2 Intraventricular hemorrhage or ivh for short which is basically a brain bleed. Added to this the antibiotics he was given for nec have caused his kidneys to stop functioning as they should. His feeds have been stopped angain and he’s been started on dopamine for his kidneys. The ivh is another watch & wait job.
Another okay day. No better but no worse. Only change medically is that he’s restarted feeds and is doing fine on that front. Still on Bipap. Still desatting. But still holding on.
Biggest news today is that he’s had BOTH eyes open! He’s been really active and alert this afternoon and was having a good look around whilst waving his little arms and legs about. He’s getting stronger it seems. This has to be a good sign.
Arlo had another good night. He’s still having desats and bradys but he’s picking himself back up with a little tweak upwards of his oxygen.
We took his brothers in today. I wanted them all to be together on Christmas Day. The night before Reuben had asked me if Father Christmas would know to visit Arlo in hospital. I said because he’d arrived so early he might not be his list yet. I was wrong. Some wonderful kind people had made sure every baby in the NICU had a Santa sack full of lovely, thoughtful presents. There was also a stocking with his name on, presents and selection boxes for both boys, a beautiful card with Arlo’s hand & footprints inside (thanks to the amazing nurses) and all of the babies had gorgeous little crocheted Christmas pudding hats on. Needless to say there many tears but for once they were of gratitude, happiness and hope.
Much better news at the ward round this morning. Arlo’s infection markers haven’t risen at all and his stomach looks a little better this morning so they’re fairly sure he doesn’t have nec. Huge huge relief. He’s been much more stable respiratory over night and is still quite happy today. The nurse looking after him has told us to go home and be with our older boys. She says he’s stable enough that we don’t need to be camped out here tonight. Second huge relief. Christmas had snuck up on us a bit. I kept vaguely thinking about xmas eve, and if we’d be able to go home or not, and then dismissing it as a bridge we’d cross when we came to it. Luckily it seems Arlo has made that decision for us and given his blessing for us to go home for a while and be with his brothers.
Another bad day. At the ward round this morning the Doctors decided not to give Arlo the third and final dose of ibuprofen. They’re not happy with his X-ray and told us he has suspected Nec (necrotising enterocolitis). He’ll remain nil by mouth and has been started on antibiotics. As we’re quickly beginning to get used to in here, all we can do now is watch and wait.
Not much to report. Arlo had his second dose of ibuprofen. He’s had some mucky looking aspirate up his og tube and his tummy looks a bit swollen so his feeds have been stopped for now and he’ll have an X-ray of his stomach tonight.
He was waving to us earlier from his little bed. As if to say ‘Hello! I know you’re there Mom & Dad!’ I hope he does.
Day 8 was not a good day. We’d been told constantly to expect good days and bad days and I’d say is our first proper Bad Day. The desats have been one after another, his sats seemed to drop lower with every one and he’s taking longer to recover from them too. He eventually had his echocardiogram today and it showed he has a patent ductus arteriosus or pda for short.
The Doctors didn’t seem hugely concerned. They said it was very common in preterm babies, particularly micro prems, and it explained the desats and increasing oxygen requirement. They’re going to start Arlo on a 3 day course of ibuprofen to try and close the duct which all sounds simple and straightforward enough however they then told us that ibuprofen carrys the risk of side effects. Some of them quite serious including brain bleeds, necrotizing enterocolitis (nec) and kidney problems. If I’m honest I feel uneasy about the ibuprofen. I don’t think it’s going to work and I have a horrible sinking feeling about the potential side effects. I guess all we can do is wait and see though. He’ll have a repeat echocardiogram on Monday.
We did have one brilliant moment today though. He’s opened one of his eyes! Only a little bit but it was amazing. He was already Captain Arlo the superhero and he’s now also Captain Arlo the pirate!
My memory is useless at the best of times, never mind during times of extreme stress! So I’m going to rely on text messages and Facebook posts to cobble together a brief summary of the last week. I may muddle a few things up and/or miss a few things out but I’ll try my best.
Arlo’s first night was relatively peaceful. I think shock had kicked in sufficiently to protect us from just how scary the situation truly was. He’d been whisked off so quickly from the delivery room and intubated at 8 minutes old so we didn’t really get to see him until a few hours later when we were taken down to the NICU.
Looking at him for the first time, I was mostly amazed at just how small he was. I knew he’d be small, obviously, but he was like a toy. I remember thinking that he looked more like a skinned rabbit than a baby. The Doctors came to see us and told us, as kindly as they could, that he had around a 60% chance of survival. I don’t think that sank in probably until the next day. I do remember wondering what I was supposed to be doing with my face though. We had a newborn baby, I was happy, but he was also on a ventilator and a Dr was talking about brain bleeds and respiratory problems and telling me there was a 40% chance he’d die. Was I supposed to be crying or happy to meet my son for the first time!? I just couldn’t work out how I was supposed to feel, I couldn’t even work out how I actually felt.
Shock was still going strong on the morning of day 2. Its mostly a blur but I know I attempted to hand express some drops of colostrum into a sringe (painstakingly slow progress there this time around but I’ll moan about that another time), and then went up to see him. I was struck again by just how small he was. They told us they were going to try extubating him later in the day. Postnatal were discharging me so we went back upstairs at some point to get my things and take them to the room we were given on the neonatal unit. When we walked back in to the NICU Arlo had been put under phototherapy lamps to bring down his bilirubin levels. The blue lights made his tiny body look more fragile than ever. Unfortunately that’s when shock and it’s lovely protective numbness decided to desert me and fear took its place. I somehow made it back out into the corridor before I began sobbing and shaking. I just couldn’t see how a baby so so tiny and delicate could survive. The reality of our situation had finally hit me, full force, and it was utterly terrifying.
Arlo was indeed extubated later that day. Onto bipap at a rate of 12/8 (I have no idea what that means, I just remember them saying it for some reason!) and needing around 50-60% oxygen. The Doctors seemed pleased. He was off to a good start.
Today there were two big milestones. Firstly, after a ridiculous amount of trouble finding the office, we registered him. He is officially Arlo River Watson. Secondly, he met his biggest brother for the first time today. Reuben lasted about 4 minutes before he decided he wanted to go for the McDonalds he’d been promised! He did ask if he could hold ‘it’ first and he loves numbers so he was very impressed with all of the numbers on the monitors!
The day after our first cuddle things started to go downhill. The nurses told us its normal for premature babies to have desaturations or ‘desats’ (when the oxygen levels in their blood drops) and bradycardias (when the heart rate drops below a certain number of beats per minute) and as long as they don’t last too long and they bring their numbers back up again themselves it’s not really a worry. Arlo was starting to struggle though and we weren’t sure why. One of the Doctors had mentioned having thought she’d heard a ‘slight murmur’ when listening to his heart the day before so it was decided he’d need a echocardiogram the next day.