My boy was in the NICU for 89 days and, at almost 9 months old, is still under the care of a consultant, physiotherapist and possibly a surgeon in future. Here’s what makes it worse.

1. You’re so lucky that you didn’t have to go through those horrible last 2 months of pregnancy. It is so hard! – Yeah. It would have been awful to know that my baby was safe and growing healthily and not fighting for his life. Would I have gone through that pain if it could have saved him the pain he’s gone through? YES. A thousand times yes. I know people that were/are miserable from SPD and I sympathise as it must be terrible. But would I rather me have SPD that my boy have 3 months in NICU and 8 months of Chronic Lung Disease and a possible future hernia op? Yes. I’d have taken SOD in a heartbeat for Jack to be born healthy and ready for the world.
2. You can get a good night’s sleep whilst he’s at the NICU. – No, I really can’t. Would you be able to sleep soundly? Knowing that miles away your baby is fighting to survive? Knowing that any moment the phone could ring with bad news? Also, just because my boy in not home with me in a mose basket next to me, doesn’t mean I’m not getting up 2-3 times a night to nourish him. 3am would find me downstairs trying to read Harry Potter, hooked up to a breast pump to get as much of that “liquid gold” as possible because it was the only useful thing I could provide that no one else can.
3. When will he catch up? – Who knows. Every baby is different. You can read as many manuals as you like but the baby hasn’t read them so he’ll do what he likes, when he likes! Hopefully he’ll have caught up developmentally by about age 2? But like I said, who knows.
4. What caused him to come early? – I really don’t know. There’s no cause. There is a list of things that make you more high risk for developing pre-eclampsia/HELLP but I was not a single one of them. I will never know.
5. I’m sure he’ll be just fine. – No you aren’t. The professionals aren’t. Everyone’s just hoping it.
6. I’m not sure I could cope with all that. – Before all this, I’d have probably thought the same. Let’s be honest, I’m not the most well equipped to handle trauma with my murky past of depression and anxiety. But look at me as proof that, yes, you would. You just do. You stay strong because your baby is the inspiration to do so.
7. He’s just wanted to come early! Or worse. It was just God’s plan. – Jack did not want to come early. I was the poorly one. He was quite happy where he was, kicking about with a strong heartbeat. I correct anyone who says that to me. I don’t want people to blame Jack not for one moment. And I’d like to think that if there is a God then he wouldn’t put any child through that. If there was a God (which I must conclude there isn’t) he’d have kept us both safe.
8. You can’t keep him inside all the time. – Yes I can. He has Chronic Lung Disease. If he gets a cold he could end up back in hospital. Now please use this whole bottle of anti-bacterial gel before you touch him!
9. You’re lucky you only have one, twins are hard work! – Not applicable to me obviously but for many mums of a premmie, that baby may have started out with a twin or triplet but had a loss. So just in case, don’t say it.
10. I know how you feel, mine was 2 weeks early. – 2 weeks early is just that. 2 weeks early. Prematurity is defined as less than 37 weeks for the NICU staff. So at 38 weeks, your baby is full-term.

I don’t mean to offend anyone with this list or downplay anyone else’s experience if your baby was term but had complications. This is just my opinion of stuff that would or has annoyed me and a couple that others have had said to them.

If you would like to follow Jack’s journey on Facebook, go to www.facebook.com/beyondthenicu

If you would like to make a donation to the wonderful NICU that saved Jack at Royal Derby Hospital, go to www.fobuderby.com

To sign the petition to extend maternity leave for Premmie Mummies, go to www.thesmallestthings.org