The honest truth about being home with a preemie 

4 weeks ago we were discharged from the special care baby unit after 15 weeks of being between The Rosie in Cambridge and our home hospital in Bedford. For the last 4 weeks everyone has asked “is it nice having her home?”. The answer is of course Yes! It’s amazing having our baby home and being able to have some sense of normality. 

But honestly, the last 4 weeks have been just as hard and as stressful as the 15 weeks previous and I feel completely out of my depth. 

Emily is my second baby, so I know what it’s like to be home with a regular, healthy baby and can’t help but compare. I wasn’t neurotic with Alex at all; cleaning happened when it happened and visitors came whenever. When Alex had her first cold we were a bit worried because we could tell her throat was sore but a quick trip to the GP and some paracetamol it was all sorted…

This time I am cleaning as much as time will allow and washing my hands more than I did in NICU, visitors are most definitely limited (although people don’t really seem eager to come round), and they must wash and gel their hands before they even consider touching her. I want to physically punch every person who stops in the street or at school or the supermarket to say how cute she is as I’m petrified they’re going to touch her. We even bought disinfectant surface and air spray…something I would never even consider before!

She got a cold and I went to the GP and was immediately referred to the paediatrician at the hospital and their biggest concern was it turning into bronchiolitis, but they sent us home with an open access note. The following day we were back there with the same concerns and the doctor was a little concerned…but she is absolutely fine after about 4 days. I sense that every time Emily has even the slightest cold we are going to freak out and do the same thing all over again! 

When in the hospital the nurses all said to try to avoid going out to crowded places for a while…how exactly can we do that with never ending follow up appointments? For at least a third of the days we have been home, we have been out for some kind of appointment and it will be like this until she is atleast 2. One of these appointments was in London and we had to get the train (luckily not the tube); not the place you want your preemie to be when they have been home only a week. 
Just to reiterate, we are over the moon Emily is home and we love her so much, this post is just raise awareness that it’s not over once your discharged. 

We have half a dozen appointments coming up and awaiting more…including an MRI, for which she will be under general anesthetic, and laser eye treatment for ROP, which will be this week. We have had to reschedule her immunisations twice too and one of the receptionists at the surgery wasn’t particularly understanding about the situation. 

Emily is also on a number of vitamins and medicines. Trying to get more of these has been a nightmare; the GP has queried everything even though it’s all there on her hospital SEND! I don’t understand why it is so difficult and it makes me so frustrated, it’s like they have never dealt with a premature baby before. 

I don’t know who to have confidence in anymore. The specialist nurses and doctors were amazing in the unit, and now communication has completely broken down. 

This is our baby. Our baby who was only 1lb 2oz at birth and struggled to gain weight. Our baby with a virus that may affect her sight and hearing in the future. Our baby with and fragile immune system. Our baby who is lucky to have survived…and now I feel like we are on our own.  

But she is extremely cute…


One thought on “The honest truth about being home with a preemie 

  1. I can’t put into words the roller coaster ride that was in nicu and when you come home after such a long time you think that’s the end of it but that’s actually when the ride really begins. You don’t have the equipment to tell you whether baby is OK or not, every sniffle is dreaded, you need to make that call whether you should go for more advice or just ride it out, the one time soon after he came home from nicu we decided he would be OK as we had taken him for a cold to hospital the week before and the health visitor had visited the day before and said he was doing well even though we were concerned about him. So we thought we’ve been told he’s OK but then suddenly he stopped breathing at home and needed to be resuscitated at home, he ended up in hospital on a ventilator with a collapsed lung and fluid on his lung and a blood clot …I could go on and on about how we’ve gone through these last 4 years and it’s been lonely at times and the endless appointments and we’re still going through it but there is light at the end of the tunnel, I think I can see a little speck of it bit the most amazing thing has been seeing my little fighter grow, his little smiles and now finally his first few words, the most cheeky happy go lucky boy I know. My little hero

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