I can’t believe I am writing this already, but Max is 1 next week! Today it is his year review at Great Ormond Street Hospital. Only one parent is allowed to go with him and obviously face coverings must be worn in the hospital due to Covid. So we decided it would be me to …
Author Archives: thespinabifidababy
Max’s MRI
Yesterday was finally our MRI day! We got into London early and had some breakfast before heading over to the Nightingale ward at GOSH. Max wasn’t allowed any food from 9.30am and he normally feeds every 2/3 hours in the morning. So we were using every tactic we had up our sleeves to keep him …
Head scan at GOSH
This week was a little tougher, but I always find Great Ormond Street Hospital trips difficult. It is the anxiety for what are we going to be told and seeing lots of poorly children who don’t deserve to be poorly that is hard. Thankfully I had my husbamd with me this time, it is amazing …
Urology Appointment
Another day at GOSH! This morning I had to get up earlier than normal to make sure I got to Gosh for Max’s 9am appointment. We have a radiology, urology and nurses appointment today so all fun and games with lots of poking and prodding. He’s also not feeling very well bless him. Henry got …
Omg last night was horrendous
I managed to put him down for 30 mins and he woke up crying again. Everytime I tried to put him down he cried and wanted the boob for comfort. I literally had him asleep on me all night. Meaning no sleep for me. My mum took him off me and sent me back to …
Day 4 PICU and the day I left hospital
So I went down at 4.30am with my expressed milk to go in the fridge, as has become routine lately. Max has been moved! They said that unless there were 2 emergencies we’d be staying put, so sounds like they’ve had a rough night bless them. He’s been moved into HDU and has a big …
Day 3 PICA
I can’t say PICU without wanting to say chu or boo. But nonetheless we have entered day three in PICU. I have just done my normal 5am wake up, pump take it down and check on Max. He is doing well but the decided to try and let him breathe unassisted for a 30 mins …
Max is well enough for home!
I woke up at home this morning. My husband messaged to say that Max is going to get discharged home today. The only reason they have to keep him in is that he’s super cute, so can’t justify it really. This is obviously amazing news, just have to wait for the drs to do their …
Back in intensive care at 4 weeks old
We are currently sat in intensive care after a ridiculously scary day. Max has had a bit of a cold that I put down to milk puke for the last couple of days. Yesterday he kept trying to cry but no noise came out as if he had a sore throat. Then over night he …
Head scan day!
My mum has come to our rescue (yet again) and is having the twins today whilst we head up go London with Max for his head scan and consultants appointment. Hoping that they will confirm everything is OK and that it is just a growth spurt. But you never know. Trying to stay positive! We …
Spina Bifida Baby 