So….we made it home. Lots of you have been asking mummy and daddy what is next for us and so apart from having fun and growing big…..here’s the boring stuff.
Both of us have referrals to the cardiologist specialists for our heart.
Both of us have referrals to the hip specialist team.
Austin has to have follow up with the eye team for his ROP disease.
Austin has to have follow up for his hearing as he failed one of the tests in his right ear.
Austin has to have an operation for his hernia. Rory has also been referred for a hernia but doesn’t require surgery unless it hasn’t self resolved when he is 5.
We are waiting on results from the next blood tests to check if our ‘infection army’ is getting better or if our bone marrow might need some extra soldiers.
We both have silent reflux and the tendency to forget to breathe.
Our first week
We came home on a super hot day, so we lived in our nappies like the good old days in NICU in our incubators. Mummy went out and bought emergency fans and daddy and grandad worked super hard to make sure all the jobs were done, including shifting 13 tonne of garden / limestone.
Mummy and daddy decided to let us sleep in our own room because it is what we had been used to in hospital and we had breathing monitors on our nappy and mummy and daddy had a video monitor so they could watch us from bed….but mummy slept on the floor because she was too worried for us with the heat. We survived!
It was our 100th day, we got a secret surprise from mummy’s friend Zebra (Debra to you) which taught mummy about ‘twingenuity’…….mummy and daddy got us up, top & tailed us, dressed us, fed us, got themselves ready, all before 9am. They even sterilised all the bottles and measured out all the milk for the day and syringed up all our medicine ready for the day. They renewed all of our Milton pots And wrote a daily checklist for mornings because if they set up for the day it makes everything so easy and quick. Mummy even has a chart with a key to record our feeds, toilet events and medicine.
Daddy and Grandad finished our drive and Nannie came to keep mummy company, we lay in our bouncers good as gold. Nannie cooked a roast beef dinner to save mummy cooking and so we had our first trip out to nannies. We went in the car to avoid local people. We sat in the corner super good, uncle craig gave us a big cuddle and we rushed home for a bath in our big boy bath seats and an early night.
On Thursday, daddy found a white feather, he said it was a sign that someone in heaven is sending us love…..we know who that special person is because of the timing. He was a really big legend and life would have been so much fun with him around. Aunty Chlo says we are already #teamdean members.
Aunty Vicky came to visit…
At night time Beau was stood barking at the nursery door, when mummy and daddy tuned in, they realised rorys breathing monitor was beeping. ‘What’s that lassie? Danger?’ 😂
On Friday the nurse came, she is a neonatal outreach sister and will visit us every week to check on us. She weighed us and we weighed 7′ 10 and 7′ 12. Rory was biggest. Rory also weed on the scales and mummy’s newly cleaned living room floor. She said in 20+ years of doing the job, she had never seen 26 weekers, never mind twins be doing so well, we have maintained our weight which is amazing. Daddy says it’s because mummy is a secret feeder at night, feeding us up to make us sleep. Rory was struggling a little bit with his breathing, wheezing…..so mummy gave him saline drops to help. The nurse also told mummy that we need to go into hospital once a month between October and February for an injection to help us fight the RSV virus we are susceptible to. It won’t stop it, but if we catch it we are less likely to go on the ventilator. So we also need to avoid mixing with other children and making trips out between October and February. It makes us slightly sad but we know we will make up for it when we are big and strong and our infection fighting army is better.
We played footy with Beau down the garden again but this time it rained and feeling rain on our face was so refreshing. We liked it a lot.
Mummy and daddy took us on our first walk (around the block so that nobody saw us and interrupted our family time) daddy pushed up hill, mummy hogged us for the rest.
Daddy held the fort whilst mummy went to the dentist.
Mummy says she is super proud of daddy being able to look after us by himself. He is very good…in fact he is our favourite, especially when he plays with us at our toy basket and takes us down the garden to play with beau. Daddy accidentally threw the ball over the fence into next door and mummy told him off. She said he would tell us off about this no doubt when we are bigger. Beau didn’t understand so daddy tricked her with a new one out of the garage.
On Saturday we visited the children’s hospital to see the consultant about Austins hernia. Before we went, Aunty Lynn and Uncle Clarry visited….
Mummy and daddy drove us to the hospital, they told us that we have been on this road twice before, both times in an ambulance, once when Austins head was peeping and we entered the real world and two when we were transferred to Barnsley. When we got there mummy and daddy put our car seats on our pram wheels….for the first time. They found the right part of the hospital with lots of helpful people holding doors open and saying how beautiful we are. The nurse called us and as expected, our pram wouldn’t fit through the door….this is why mummy put our car seats on the wheels, so they could click us off and carry us into the room, leaving our wheels outside of the door…..except neither mummy, daddy Or the nurse could work out how to get the car seat off the wheels. Mummy was mortified. Fail to prepare – prepare to fail! Outcome of the appointment – Austin to have an operation in 4-6 week.
Mummy and daddy had planned to walk around Weston Park in the sunshine because nobody knows us there and we can enjoy being a family without the fuss. When we got there we realised it was tramlines and there was a little gala type event in he park, so we had a walk round and then sat under a tree, listening to the swing band and enjoying the moment. Mummy had shiny eyes because she was the most happy, content and relaxed she has ever been. She said to daddy that she finally realised she had made it in life, she had everything she ever wanted.
We later found out that mummy’s friend was there and saw us, she said that she too had shiny eyes seeing us so happy as a family and she chose to leave us to enjoy our moment. We are really grateful to her for being so selfless. We were in our own little bubble.
On the way home mummy rang Great Grandma Jean to warn her to let Rosie the dog out so that we could have a quick visit. She was so excited that she was already waiting at the door….
Mummy had an important job to do when we got home….car insurance…..mummy was chatting away on the phone, telling the lady about her mummy truck, when she noticed white stuff all over rorys face. And then Austins. It was sick. We were rolling about ninit. It was in our hair, , eyes, up our nose and we were happy,y playing in it. Mummy managed to clear it all up, change our bedding, clothes and seal the deal with the car insurance….all at once. Talented!
Sue (old bird up roadblocks) made a quick visit after chatting over the fence. We were playing in the garden again with Beau. We think she likes us.
On Sunday, mummy and daddy had a lie in, we usually give mummy two hour intervals between feeds. Then we went to Wentworth Day with mummy, daddy, Nannie and Grandad newbs. and Beau. It was fun. We saw Aunty Vicky and uncle Nath and lots of other friends of mummy’s.
Nannie and Grandad also brought us gifts…..original glo worms. Daddy had one when he was a baby….how thoughtful.
When we got home, Nannie, grandad and uncle craig visited. Mummy got them training up for jobs….
On Monday, Aunty nat visited with a big basket of goodies for us. When she saw us she cried. Nannie and Grandad visited quickly whilst daddy helped grandad prepare our boy shed. Mummy decided that she was going to fly solo. She planned a trip and cracked on….she needs to be confident for when daddy goes back to work but we all think she is rocking it already and she will be fine.
So….mummy set off up the hill to Hoyland. Allowed herself one stop to rest but she aimed to push us all of the way up without stopping. She made it….first stop co-op for a can of pop.
She took us to the Drs to see mummy’s friends who work there and then she took us to make members at the library. We have our own little cards. Mummy also visited the bank to book in to open us both a bank account.
Mummy was having so much fun that she wasn’t ready for home yet. So…she pushed us to Grandads bench to have a drink with him. We ended up listening to Brad the landlord telling mummy all of his parent tips. He also gave us a pound each.Then we saw grandma jeans cousin, dolly so ran over to say hello. Mummy was very proud. She was so hot and flustered when she got home she used a muslin cloth to tie her hair up whilst sh changed us at the bum station.
On Tuesday the health visitor came, we now weigh 8lb 1oz and 8lb 2 ounce. Both of us are doing really well – mummy and daddy took us to lock park with beau after…
We even saw the hospital from ‘the other side’
Beau was good as gold in the car…..
On Wednesday the nurse came again. She was super happy with us, we are putting on 50g a day. We Seem to be settling in and mummy and daddy are doing a really good job so far. The nurse did tell mo to hospital for our point nets we should lain how prem we are and ask to be seated in a separate room as opposed to the communal waiting room…..this is when mummy realised she might be a bit too relaxed about germs (I bet nobody thought that would be the case) We also had visitors – Nannie and grandad held the fort this morning whilst mummy cleaned up and did all the washing and daddy mowed the lawns and the garden. Then uncle Pete and sue came…
Mummy and daddy are feeling very proud of themselves, they’re an amazing team, are super organised and are loving every minute. This is the easy part for them, they cherish everything.
Mummy and daddy have both spent solo time with us and have felt confident about iT. They have left the house a number of times and developed methods and routines that make life easier.
Mummy is much more relaxed than people thought she would be, she got a taste of normality at home and almost forgot about how poorly we were. It is when the nurse visits and reminds mummy that we shouldn’t be mixing with the world, no shopping centres, play dates, children, smokers, crowded places and hospital waiting rooms that she remembers how important it is to keep us wrapped in cotton wool for a while longer. Despite everyone thinking they know better and that we should be getting germs to build up our immune system – it isn’t like that for us.
So, we are living the dream. Mummy and daddy are not perfect but they are having a good go and despite the two hours sleep at a time with a grand total of 6 hours per night, the constant cleaning of bottles, measuring of milk, 3 hourly routine on repeat…..they would not have it any other way. They are totally smitten. In fact, they say it is the best thing ever. Daddy says it is a walk in the park and one would be a piece of cake. (I’m sure the rough parts will come but be enjoyed equally Truth is I think mummy and daddy had such a rough ride that this is the easy bit they have wanted for so long. 💙💙
Mummy and daddy are taking us to the Mates of Milton gala on Sunday 31st July 12-4 (hope to see you there) and planning a park play date next week, get in touch if you want to come along.
So…..here is our first week. We have lots of fun ahead and we will be sure to keep you updated. Lots of people have told mummy how much they miss our daily blogs…mummy misses them too because they got her through a very difficult time, but life is far too good to spend it sat writing blogs at the moment. We will surprise you every now and again instead!!
Austin & Rory