October 21, 2015. It’s happening.

Make sure you’ve got some time right now, we need to have a talk.

Because something big is about to happen.

It’s good, it’s sad, it’s hard, it’s about time.

Oliver John is coming home.

May 29 2015, Oliver John and Charlie David, 748g and 720g respectively.

155 days later, October 30 2015.
We will put our little boy in his capsule and drive him away from the hospital.
Almost 4000g.
6 weeks corrected, 22 weeks old. 5.5 months.

Chronic lung disease, retinopathy of prematurity, inguinal hernia repair, laser eye surgery, intubation, CPAP, nasal flow, NJ, NG, blood transfusion, albumin transfusion, central line, UVC, iron, sodium, phosphate, calcium, diuretics, antibiotics, calories, weights, fluid, milk, pumps, incubators…

We are leaving pretty much all of this behind. However, we are taking a little bit with us. Our boy may fully breastfeed, but he just can’t do it quickly so we are taking him home with a nasogastric tube so that we can continue to work on the feeding at home. Oliver and his mum and dad are all ready to be home, the staff in the nicu have been amazing, but it’s time for us to leave them, we need to be a family and process some of the last 6 months together.

This is really really exciting. And we know that you will all be so happy for us and be absolutely dying to come and see us and meet this gorgeous boy.

STOP.

We are going to be blunt here and say NO.

Oliver may be a big baby now, and he seems robust and healthy, but the effects of being born at 24 weeks continue for Oliver and he is not a normal 6 week old baby. He has never been out of the artificial air of the nicu, his body is about to get a huge, massive, unbelievable shock.

The immunity that he should have got from me gets transferred in that lovely third trimester that we didn’t get to experience, so the main thing that will give Oliver immunity now is TIME.
– this is why Oliver cannot be around anyone who is remotely sick, or anyone who has been with someone who is sick. He also cannot be around any children of preschool age, as they are often carrying some pretty big bugs with them. Your bugs are too big for him. A common cold can hit Oliver’s diseased lungs extremely hard, he won’t be able to breathe and he’s worked so hard for so long to breathe that this will end up with the hospital, and if he contracts RSV, which is a common winter virus, this could mean ICU, or starship hospital.

His neurological development is slower than full term babies, which means that he gets very easily overwhelmed. If you talk animatedly to him while you touch him on his arms, head, tummy, he can get tired and stressed and he does not know how to respond to the multiple types of stimulation.
– this is why Oliver cannot be held by multiple people, passed around, or stimulated by several things at once, as this has a ripple effect of him sleeping poorly, eating poorly, weight loss, back in hospital.

Oliver is still growing and developing a lot, which means that he needs a LOT of sleep. His feeds are planned so that he can have as much rest and sleep as possible so he can grow to the best he can be. This means that when he is asleep, he needs to be left to sleep, and when it’s time for him to sleep he needs to be allowed to go to sleep.
– this is why there will be times that he won’t be able to see you because if he doesn’t get enough sleep he won’t be able to eat, grow, gain weight, back in hospital.

The common theme here is that there are many, many ways in which Oliver could end up back in hospital.
And this is not back to the nicu.
This is up to the paediatric wards, full of sick kids and their big bugs.
William and I are aiming to do our very best to keep our little boy at home with us. We have spent 5.5 months in hospital, we don’t want one single day more.

Please, please, please understand that every time we say no to you, every time we ask you to wait, we are just trying to protect Oliver so that he can grow up to be a little boy who doesn’t remember all the awful things he had to go through in the hospital.

So here they are, the rules, that will ease up over time but for the first 6 months this is it.

The 10 rules of Oliver’s home:

1. This is not a ‘drop in’ house anymore. If you want to visit you need to text or call us first.
2. If you are sick or your family is sick, please do not visit. Not just deadly sick, a throat tickle, a runny nose, any of it. If in doubt, don’t come.
3. If you are less than 5 years old please do not visit until Oliver is a bit bigger.
4. Please wash your hands when you enter the house.
5. Use sterigel or wash your hands 100 times while you visit. (You think I’m joking).
6. Do not disturb anyone if they are sleeping.
7. If you smoke please do not visit.
8. If Oliver is feeding please do not disturb him.
9. Please wash your hands or sterigel before or after touching Oliver or any of his things.
10. Please take it slow with us, as he’s very precious and we will find it hard to share him.

If you wish to talk to us about any of this please feel free and we will try to explain it further.
But please understand this is our family, and the way we need to operate to keep Oliver healthy and growing.

We ask that nobody request to visit during the first 10 days. Please let us get home and spend some time as a family. Let us soak up the excitement of having Oliver with us and let us breathe through the agony of not having Charlie. Because going home is also a huge step away from the time that we held Charlie, our memories of him and our plans for taking our two little boys home.
Nothing about this homecoming is what we wanted it to be and we need to do it in the way that works for us.

And then, when things feel a little routined and a little settled we will slowly introduce you one by one to the miracle that is Oliver.

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Author: rfclews

I'm just another mum trying to figure all of this out, with the added bonus of getting to start extra early, and well and truly on the back foot!

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