Tales from a NICU journal, week two of thirteen.

7th Jul 2024, tales from a NICU journal.

We have a name, Benjamin Edward Snaith. We are on day 3 of sedation / being paralysed and Benjamin is nice and stable.

 The plan is to gently wake him up on day 5 and then they will check for any leaks in the oesophagus. From there they may try to start giving little bits of milk. Initially milk will be given to his stomach via a tube in his nose so it will be a while until he is feeding normally. At the moment he is just getting fluids and nutrition through a long line in his leg. 

We have had a room on NICU so I have been able to stay every night. Ed has been home with Esme for the past 2 nights and I’m going to go home with them today just to have a breather and change of scenery.

Esme has been amazing and taken it all in her stride. We are so proud of her. She is totally in love with her little brother. 

Our nurse kindly captured the moment Esme met Benjamin for the first time. We were blown away by how brave she was. It was tempting to shield her from the ‘scary’ sight of he brother hooked up to machines with wires everywhere but she just took it in her stride.

She taught us so much about acceptance and finding the positive. After all, this was Benjamin’s little life, he didn’t know any different and she helped us find joy in all the ‘firsts’ you experience as parents, even if they are different to what you expected.

I am expressing breast milk for him and storing it in the freezer on NICU. It’s been challenging as the hormones of breastfeeding work best when you have your baby on you in skin to skin but there is amazing support here. It’s also nice to have something to focus on as you can feel pretty helpless looking at him in the incubator, especially because he is so still. 

When you arrive on NICU you are given a tray in the freezer where you can store your expressed milk. It’s surprising how quickly it builds up when he isn’t drinking it.

There is no indication as to how long we will be here as there are so many stages to his recovery. You would think that we would want to get home as soon as possible but while he is so poorly it’s reassuring to know he is safe here and we feel totally at peace with him staying here as long as he needs to. 

Often this condition is associated with other syndromes or birth defects. Some of these have been ruled out and there aren’t any obvious signs of any other problems but he will still have tests over the next few weeks to confirm this is an isolated condition. 

Finally, when a baby is in NICU it’s very easy to forget that the mothers have just given birth and are experiencing all the normal post-partum side effects. My milk has come in and my breasts were extremely engorged for a couple of days. The feeding specialists are amazing and sat with me in my NICU bedroom trying to encourage the let down and release some of the milk. We’ve had some giggles as the nurse was calling me Pamela Anderson. It still surprises me how you find joy despite the horrendous circumstances.

It makes me smile that despite being surrounded by the best science and medical experts, it’s still the old wives tales that come through to save the day.

One of the older specialist nurses overheard me talking about being engorged and suggested cabbage leaves - it was the only thing that worked!

A great example of the importance of womens’ knowledge being passed down through the generations, even in such a highly medicalised environment.