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THE STORY OF MILLIE AND ME

 

ABOUT THE BLOG

After lots of back and forth, I have finally decided to create a blog of Millie's story. When we first started on this adventure a few people told me to start one, but I couldn't bring myself to do it. I did however, take huge comfort in keeping a diary for our daughter, during her time on NICU. In my last diary entry to her I congratulated her on her discharge. Our little fighter had spent 12 days in intensive care, 50 days in high dependency and 18 days in special care - A total of 80 days in hospital. 

She was given 40 different drugs whilst on the unit, and was extremely close to not making it at all. Naively, we thought that was the end of our premature baby roller coaster. We soon found out, however, that even though you've made that last entry, closed the diary and finally left as a family of 3 through the NICU doors you tirelessly walked through every day - The roller coaster doesn't end there...

This is Millie's story

 
 
 
 

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How to cope with NICU

Having a baby on NICU is not just a difficult time for the parents. There are a lot of other people on this journey too: Aunties, uncles, grandparents, great grandparents and close friends. As I have always said in my previous posts, our friends and family have been absolutely amazing, particularly through the really difficult times. They seemed to know exactly when to give us space, but also when we needed them the most (when they would turn up unannounced with bags of food, after noticing we hadn't eaten for days!)


However, I can imagine how difficult is was for them too. Especially so, because it was hard to know what we needed to get by, but they were also sick with worry about Millie - just as much as we were! There are also a lot of articles I have read online, with questions you should and shouldn't ask parents who have babies on NICU. I thought I would therefore create a blog post on this, from my point of view..


1) "What can I do to help?" Helplessness is the hardest emotion to deal with, believe me we know this better than anyone. However, unless you're a neonatal consultant there isn't much you can do to help! While the question is obviously asked with the best intentions, we didn't have the mental capacity outside of anything not to do with Millie, to think of anything we needed help with. All we needed was to know help was there if we wanted it.


Rather than what can I do to help, a simple I'm here if you need anything is enough..


2) "What weight does she need to be to come home?" Most babies in NICU are not battling with weight issues to be able to go home. They all have much more severe illnesses to overcome first. In Millie's case, it was her chronic lung disease which kept her on the unit. Actually, there were babies on the unit born at a younger gestation and weighed less than Millie, who actually went home quicker.


3) "At least you didn't have to go through the third trimester / put on too much weight" I would have given anything to go through my third trimester. I have absolutely no idea what a contraction feels like, what labour feels like. I was starting to feel light kicks, but am absolutely gutted I missed out on the really big ones.. and seeing a foot through my tummy. I didn't get to feel Millie roll around or react to sounds in the outside world. Looking at me, people couldn't even tell I was pregnant. I feel completely robbed of my pregnancy. Also, we were so worried about Millie, we rarely ate at home, and ended up living off take-away food and sandwiches, so I probably put on just as much weight as getting to term!


4) "At least you are getting a good nights sleep - You wont get any when baby is home" No, we have never had a good nights sleep since the day Millie was born. She was so poorly, we both suffered from broken sleep and the occasional night of no sleep at all. Now that Millie is home, I sleep much better at night, knowing she is next to me!


5) "How are you?" or "It's OK" Really, really?! Unless you're prepared for a full on break down I would completely avoid any sort of reassurance! I remember a nurse we knew well, putting a hand on my arm after we were called in at 2am as Millie had been poorly. I just broke down into tears.. I even said to her, what did you do that for? I was fine before you showed me reassurance!


6) "She's OK though isn't she?" No, she's not OK. She wouldn't be in intensive care if she was OK. While people need reassurance it is so difficult for the parent to reassure anyone else, we are barely managing to get by ourselves. Trust that the parents will let you know if there is a change to babies condition.


My favourite question I have heard, was sent to me by another mum on NICU who was asked "why did you choose to have your baby so early"?! Trust me, none of us chose to go down this path - But none of us would change it for the world, because we would never have met our little miracles...


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