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Carly and Isla's story- part two

Yesterday, I published Carly and Isla's birth story, please click here to read if you haven't already! Below is what happened after Carly gave birth prematurely at just 31 weeks. Isla was taken into NICU, and how Carly coped as a NICU parent. This is something I am all to familiar with, please click here to read Elijah's admission to NICU.

As mentioned yesterday, I wanted to start a series of guest blog posts from others who have gone through similar things, a platform for others to share their feelings, experiences and to help and provide comfort to others going through the same thing. So we can all support one another, educate and raise awareness. These are the NICU MUM medical files.

Carly's NICU story

The next day we spent the whole day in the NICU and were able to hold Isla for the first time, learning the importance of skin to skin and spending hours studying everything about her. Each day the staff in the NICU had a half hour changeover at 8pm so we used this time to get dinner and now in hindsight we laugh at the fact that I went to the Chicken Shop on the day that I gave birth!

The following morning, I was discharged so went home to get showered and changed before heading straight back to the hospital. So began a month of going to and from the hospital every day. This felt really strange to begin with as I had imagined hibernating for a few days with our new-born, not sitting on a bus alone the very next day. In fact, I was offered a seat as someone assumed I was still pregnant because I didn't have a baby with me!
Baby Isla in the NICU
Isla was jaundiced, on intravenous antibiotics, fed through a tube and breathing with the assistance of a cPap machine, however we were gradually beginning to realise that it was looking likely she didn't have any other serious issues and after 2 days she was moved into the high dependency room where she stayed for a week. This time was very scary, it was the not knowing that was so unsettling. I became obsessed with watching her heartbeat monitor and paranoid every time it dropped, insisting that the nurses record it on her chart. I constantly thought back to the birth and how at one point her heartbeat had slowed to half what it should have been for 20 minutes and the fact that I never did get the magnesium sulphate which would have protected her from many disorders. She was due to have a brain scan which kept getting postponed which I worried about a lot.  I knocked her umbilical cord off when it got caught on my bra during skin to skin! The medical staff were very relaxed about all these things and I wish I'd had more faith in their confidence but it's very difficult not to think the worst.
 
One of the things I found the hardest about our start of parenthood in the NICU is the number of visitors we had. We had over 20 friends and family come to the hospital in the first week. Everyone that came to see us did so to be supportive because they love us but at the time it felt that people were coming to gawk at her in a fish tank. I couldn't help but think that if she had been born in more normal circumstances we'd have been given a few days at home to spend time as a family before the crowds descended.  One of my lowest points was on day 4 I just wanted to spend time with my baby but my husband’s aunty and cousins were coming to the hospital and I couldn't face having to make small talk, so I took off by myself to buy a breast pump just to get away but found myself in floods of tears in the middle of Mothercare, feeling so overwhelmed by the situation.  I also felt uncomfortable whenever anyone said congratulations as I wasn't supposed to have a baby yet! it was also difficult to deal with comments such as "at least you didn't get really big" or "at least you can sleep through the night" - when I'd have definitely traded those things to know that my daughter was safe and healthy.
Skin to Skin cuddles
When she was 9 days old Isla was moved to the Special Care unit which was much more relaxed and the emphasis was just on getting her big enough and strong enough to go home. She suddenly had far fewer monitors and I was constantly worried that I didn't know what her heart rate was at all times! A week later she was moved to a cot with a heated mattress, however she was moved back into her incubator twice as her temperature kept dropping.  All that remained was for her to get the hang of feeding before we could take her home. I had heard that breastfeeding was even more important for premature babies so was adamant that I wanted to be able to feed her myself.  The time in special care was like groundhog day.
My husband had gone back to work and was fully focused on trying to establish feeding.  At this point I was spending 10 hours a day at the hospital so that I could be there for as many feeds as possible.  I attempted to feed her at the same time as she had her tube feeds so she would associate feeding with the feeling of being full. I was expressing every three hours to establish my supply, including through the night. It eventually took 3 weeks to get to the point that the hospital was happy she was gaining enough weight to consider going home. We also had to complete a checklist which included things like buying a thermometer and attending CPR training.  We then "roomed in" at the hospital for 2 nights which was a brilliant way to ease into being on our own but with the support of the medical staff nearby.
 
We finally took Isla home after 29 days at hospital. We were originally told to aim for her due date so we were so lucky that she came home almost a month before this, in fact she even attended her own baby shower!! One positive of the experience was that we got to know her well during her time at hospital so we didn't have the fear that most new parents have when she made strange noises in the middle of the night - we already knew all her strange noises!  We were still very paranoid though, I felt as though I needed to know her oxygen saturation levels and was constantly taking her temperature.  We were very conscious about her temperature dropping as this had been such an issue at the hospital, so much so we dressed her in a snowsuit and several layers the first time we ventured out the house even though it was 20 degrees outside - of course she overheated!
 
We were under the care of the community nurse for around a month after Isla came home and were discharged after around a month. She was still being tested regularly for jaundice at this time, was on medication for reflux and had an umbilical hernia for around 8 months. She still has check ups at the hospital but they are becoming less regular and they are happy with her progress.  Isla is still small for her age, wearing 9-12 month clothes at 20 months but I'm finding myself explaining her age / corrected age less and less the older she gets. We know we are incredibly lucky for her to have no long term illnesses and feel incredibly blessed. The NICU feels a long way away as we watch her grow and develop into a very lively toddler!
Look at me now!
Carly would also like to thank the charity that helped her during her family's NICU stay, whom she has even run a marathon for! http://www.first-touch.org.uk

NICU MUM similar posts;

 A guide to surviving your time in NICU
If you have a story to tell and want to be part of the NICU MUM medical file guest posts please contact me!

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