"Looking back, it was worth every second" - Caitlin’s story #FullTermFeelings

Caitlin 1

Caitlin knew that her baby girl Eden would end up in NICU because her small bowel would be born outside of her body. For Full Term Awareness Month, she shares their neonatal journey.

From 16 weeks into my pregnancy, we knew that our baby girl Eden was going to be in NICU. We had been told that her small bowel would be on the outside of her body when she was born, and therefore that she could be in the neonatal unit anytime between six to eight weeks.

I wasn't allowed to have her at my local hospital because they didn't have a surgeon able to deal with her condition, so we had to go over an hour away to the bigger city hospital, where I had lots of appointments and scans.

I went around the NICU a few times because I wanted to get used to seeing babies with tubes and oxygen. I thought if I saw it a bit more often, it wouldn’t be such a shock when I saw Eden.

I was induced on the Tuesday and it got to the Thursday evening, at 37+2 weeks, and I hadn't made any progress in terms of dilation, but she was showing a lot of distress.

She'd responded really badly to the hormone drip so it got to the point where they said you can either carry on and push through and we'll do a c-section on Friday, or you can have one tonight.

At that point it was 11:45pm and I was so tired, so I said, “Yes let's do it now.” When they started the c-section, Eden was safe and healthy, but when I had the spinal tap, they lost her completely and couldn’t find her heart rate.

They got her out as quickly as possible – it was three minutes from the first cut to when she was born. I wasn't allowed to see her within the first few minutes because all her organs were outside of her body - her small bowel, large bowel, and the whole of her stomach outside of her body. It was such a shock, but luckily it was all pink, healthy tissue.

They covered her in cling film to stop any infection risk, and asked me if I wanted a cuddle, which I think is quite rare for gastroschisis babies, but I was in so much shock and freaked out from the escalation of it that I couldn't hold her.

Her dad had a cuddle and held her right up to me, and that was really lovely. We got to hold her for about two minutes, which was really special.

Later, at around 3am, I was in recovery for my c-section when some surgeons came through to my bay with all the other mums and their babies and said the closure had been done.

I didn't even know they were doing it. I thought Eden was in NICU being checked over, but they said there was a short window to get it done.

I don't think I would have wanted to have been there, but I think I would have wanted to know it was happening and be able to ask for updates. I had spoken to another mum who had a baby of the same condition about three months after Eden was born at the same hospital, and she was getting sent photos throughout.

With gastroschisis babies, there are different closures, and I would say we were very lucky with the one she had - they were able to put everything inside her and they didn't even use stitches to close her up.

They were able to do an umbilicoplasty, so her scarring is quite minimal although she has got to have another surgery.

We spent the first four or five days of Eden’s life in the intensive care room and there was obviously no feeding. We were able to hold her a few times, but we spent most of our time just watching her and making sure she had no infection markers. She had a central line in at that point too, so we were watching her wound, making sure it healed and gave her all the medication.

Caitlin 2

The rest of NICU was fairly smooth sailing until we got near the end and then we had quite a few setbacks that really knocked us. There was actually another baby in there who was in a very similar condition and I remember seeing them hitting all the milestones with feeding and other things like that. Things that Eden should have met by then and hadn't. I was really envious that they were getting through NICU so much quicker, even though they were born after Eden.

Once she started having milk, which was I think on day 15 of life, it was quite good until we got to around day 25. I went into Eden’s room and all her bedding had been changed and her clothes had been changed and normally I'm the only one who does that because I was there all day every day, so I did all the changes.

I had a gut feeling that something was wrong and wondered why they changed her. Then I noticed up the side of her incubator, they'd obviously tried to clean it, but there were a few little dots of yellow bile.

It turned out she had thrown up bile everywhere - it was a highlighter yellow colour. It was horrible and with her condition, it’s a very bad sign that she might have started to not tolerate food.

We hadn’t had the morning rounds yet so I was waiting to speak to the doctors, but the nurses in there said that essentially she should have been back to normal by now. Rather than her milk intake going up every day, which it had been previously, it would go up like every other day. I sobbed and had panic attacks because we'd already been there for just over three weeks.

I was there on my own that day so my partner had to leave work and come to see me because I was a mess. When the doctors came around they weren't as worried as I thought they were going to be.

They said if it happens again, we'll treat it as her not tolerating it, but she might have had a bad tummy. Luckily for us, it didn't happen again.

Then, on what was supposed to be our discharge day, we had our bags packed and we were waiting to get discharge papers when they told us that Eden needed a scan of her liver for her jaundice before we could leave.

In the scan, they said, “She's not got a gallbladder.” I thought, “What's going on?” Obviously we couldn't go home that day or the next day because they couldn't fit her in for any scans.

Eventually, she went for another scan where she had to fast so they could get the clearest possible view, which was horrible, but they found that she did have a gallbladder. It was such a relief!

Eventually, on the day we made it home, something hit both of us. We couldn't wait around anymore - either we were going home or we weren't. It was hard to be in limbo.

My experience on the unit was interesting - I’m 24 years old and I felt like none of the mums wanted to talk to me, as well as the nurses. I was mainly on my own all day, with Eden. We went into every room on that unit and were there for a decent amount of time, but only three nurses took the time to chat with me and make me feel comfortable.

My mat leave ended three weeks ago, and I haven't gone back to work yet. While in hospital, I didn’t feel like my maternity leave was being wasted, because I still got to be with her, but I was jealous of other mums who got to spend the whole time at home.

Now I'm going to look for part-time work that works around my partner's hours. Because of Eden’s condition, I don't want to put her in childcare because there's so much risk of a bowel obstruction.

I want to know that anyone looking after her can deal with her condition and know the signs of it.

Eden’s condition shouldn’t impact her too much in her day-to-day life, other than that she's more likely to have a food intolerance and might not be able to digest as perfectly as the rest of us.

She will have regular appointments for the rest of her life to get everything checked out, and she also has a liver condition because of the gastroschisis, but I don’t know how much further that will go in her life.

We were in NICU for about 34 days in total. For other parents going through a NICU journey, I know that it’s rubbish, draining, exhausting and stressful, but looking back, it was worth every second.

Eden is so happy and doing so well in terms of other babies her age. I had this vision that she would struggle and be behind and like she wasn't being stimulated in the NICU and I was so stressed worried about it, but she's really happy.