NICU & SCBU

It was the day after Harry was born. My sister showered me before we went to the Neonatal Intensive Care Unit (NICU) to see Harry. I had washed her after her second son was born. I’m lucky to have a relationship with my sister like that. I was starting to feel a bit of pain by now. I was sleepy & a bit out of it. All I could do was stare at our baby boy. I wanted to hold him so badly. It was hard for me watching nurses do all these different things to him. I don’t want to sound ungrateful because how lucky were we for him to be in that type of care. It was just my instincts, he was my baby & it was my job to be looking after him.

We had the most beautiful nurse looking after him, a lady I will never forget. She said I could hold him. I was holding my boy for the first time! I was petrified I would drop him. He was so small & cords covered the whole of his tiny body. I have a video of our first hold below. 

I had been allowed to stay at the hospital for 2 nights but then it was my time to go home. I feel sick thinking about how I had to walk out of the doors without him in my arms. It was a feeling of guilt but also just sadness. 

I had to set my alarm & breast pump every 3 hours. The first few nights were the harshest. I’m convinced my body was confused. Why didn’t I have the touch of my baby? Where was he? Being at home & waking up without him there all through the night was hard. I was exhausted & some days I would cry at the drop of a hat. 

3 days past & it was time for his second surgery. The surgeon would be closing his tummy. I can’t explain the feeling that went through my body when they wheeled him off. I felt so helpless & for some reason, guilt. Guilt I couldn’t do anything for him even though I knew there was nothing I could possibly do to help him. It was a feeling I couldn’t shift & I think that was just part of becoming a mum for the first time & not being able to helped like I wanted to. 

They managed to get all of his bowel back in. How amazing, he had been on this earth for only 3 days & had been to surgery twice & had full closure of his tiny belly. He was heavily sedated & on strong pain relief. When time had passed they needed to ween him off of the pain relief, it was awful. The body gets dependent quickly & he would twitch & shake from the withdrawals, this took a few days. Then he was transferred to Special Care Baby Unit (SCBU).

Harry was not allowed to eat for the first 2 weeks of his life. He was fed fats through a line in his arm to help him gain weight but he never had a full tummy. His bowel was in shock & they needed to wait until the green bile that would come up from his tummy would settle down. Thank God for the dummy. He sucked on that thing like you wouldn’t believe. It was awful to think he was hungry & it was heart breaking not being able to feed him. 

Time had passed and things were going well & it was time to try & feed him. Believe me when Harry reached any milestone Tom & I would be so happy. It was a pretty much, see how it goes he either stomaches it or he throws it up straight away. The first feed was a tiny 2ml every 4 hours through a tube in his nose. 2ml… that wouldn’t be enough to fill his tummy, so he would still be hungry. He never complained. The first feed was successful. He had kept it all down & normal amount of bile came up. 
Every day after that he would go up 2ml. So the next day was 4ml every 4 hours & so on. 
I was allowed to feed Harry with my pinky finger, they would syringe the tiny bit of milk through his mouth & my finger would act as the nipple. He started to get a taste for my milk & wanted more. That’s when he started to get unsettled. 

Around a week after he started feeds through the tube in his nose they asked me if I would like to ‘breast feed’ of course I did. It was something so important to me, the only thing at that time that I could really do for him. Because they were monitoring so closely how much milk he was getting I had to express all the milk out of my boob first & then ‘feed’ him on an empty breast. A bit cruel really. But he latched so well & was a little star. 

It got to week 3 & Harry got sick. He had a big vomit & had to stop feeds for 24 hours. He was hungry at this stage. He knew what milk was. It was sad. He had an infection in his arm from the long line going up his vein. I spotted a red lump on his arm that the medical staff hadn’t picked up yet. That was sign of infection. They replaced the long line & put him on antibiotics straight away. The next day was hard. Our poor boy was starving.
Being the little battler Harry is he recovered quite quickly & the feeds started to increase. He needed to be on 60ml before he could come home and being on small amounts every 3 hours we still had a long way to go. At times it felt like a life time away. But as time went on he had less & less bile coming up & the process was starting to become faster. He amazed the doctors. They could not believe how well he was tolerating the feeds. Some gastro babies can be in hospital for months & months & at times we thought this might be the case. 

Days were long in the nursery. It wasn’t a very happy place to be, surrounded by sick babies. At times it was lonely. Tom had to go back to work after the first week so a lot of the time I was there by myself. We had great support from our families and initially I couldn’t drive because of the Caesarian so had to rely on help getting to and from the hospital but a lot of the time it was just me during the day. I would make two trips in there every day. Once in the morning until late afternoon & after dinner with Tom and we would stay there as long as we could even though we were exhausted. At times I thought I could go crazy. I didn’t want to be in there because it was hard, but I didn’t want to be at home either because that would mean I wouldn’t be with him. 

It got to week 4 & home time was close. Every single day we needed to wait to see the doctor to see if & when we could take Harry home. He wasn’t gaining much weight so there was another delay ….so more tests. This went on for a whole week & we would ring in the morning to see what his late night weight was. This would determine if we could take him home or not. I had a few sleepless nights wondering what the outcome would be in the morning. 
The day finally came. He had been in hospital for 5 weeks exactly. We went in with our capsule & his very own going home outfit. The nurse said there was a chance we would be taking an empty capsule home once again. Our hearts sank. They were still concerned about Harry not gaining weight. They did a few more tests & thankfully the doctor said rather than keeping him in to take him home & they would contact us with results. We were so relieved. The last 5 weeks had been a roller coaster ride of emotions but It was time to take him home…. his home where everything had been ready for him for weeks. Harry was ready and we were ready… we thought we were ready!!!! 
We met so many wonderful people at the hospital & we will always be forever grateful for the care he received. On the first night we had him home we got a lovely message from one of the midwives that worked nights & had taken care of Harry. 


“Every now and then a special baby imprints their little hands on my heart. Harry did this. He was so brave and strong with all his setbacks. He never screamed and carried on even when he was starving and we fed him 2 mls every 4 hours. And through it all you were both there by his side. It’s so important for parents to be involved even when it gets so hard. You are both awesome and Harry is so lucky to have you.”

We are so proud of Harry & we were so delighted to get this message.  ​

Apologise these pictures aren’t in order!! ​

Our first hold.


First skin to skin.

Harry’s Scar
On our way to get our boy. 

So tiny in the capsule.when my phone thought the hospital was my home.
Our car ride home.

Harry’s first bath.

​Arriving home & meeting his cousin Max & Ollie for the first time. “Wow”

6 thoughts on “NICU & SCBU

  1. Oh wow, this brought me to tears.
    What an emotional yet beautiful time for you and Tom. He sure is a little fighter! Thank you for sharing x

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  2. Just beautiful Renee! I had tears! The photos are gorgeous and heart breaking at the same time. Thank you for sharing.

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  3. Hi Renee. I found you on intsagram searching “gastroschisis” last week. As I lay here unable to sleep I decided to check back at your profile and noticed you had a new blog. As I am currently gearing up for this same journey, I can’t help but to be an emotional wreck reading yours. I am just about 29 weeks pregnant with baby #3. Yesterday at my scan he measured a week behind in growth as well as my fluid being low. I had to quickly get to my dr and have a steroid shot, my kids at least found it amusing that it needed to be in my bum, I will need to have another one tomorrow. They are preparing in case of an early delivery which I respect but man did it hurt! The rest of the day I just wanted to laying in bed and watch cartoons with my daughter and I did for a bit. I’m terrified about how I am going to manage NICU life and home life with hubby and two kids needing me here and baby needing me with him.

    So many uncertainties right now. I appreciate you sharing your story. I know that it will help me alone the way. Harry is so cute and has such a beautiful mommy! Take care!

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    • Hi Jennifer. I’m sorry you have had the same worry as us during your pregnancy. I understand the toll it takes on you & the people surrounding you. You will be so much stronger than you think. As you are already a mum you know that when you need to be strong something just takes over and that’s all you can be. Where abouts do you live? I would love to chat if you could find me on Facebook under Renée Barendregt xx

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