Blue! The colour of Rory when his Trachy got blocked and he stopped breathing at 3am a fortnight ago on Saturday. So how did we get here? It may seem that we have some kind of blogging bipolar because one minute our world is Sunshine and flowers and the next it’s raining and pouring! 🙄 The truth is, that is how our life is at the moment, well isn’t life generally anyway?
Our last blog was the 12th January, in the past month we literally haven’t had a minute, either too busy with hospital appointments, too tired from night shifts caring for Rory or too poorly with respiratory infections. So here was the rest of our January in pictures (the sunshine & flowers bit)….
Giggles in our tipi…
Selfies with Mummy..
Holding hands and watching Milkshake…
We managed two trips to Frankie and Benny’s. It’s the little things that are often taken for granted, we were well enough to go out for food, mummy and daddy haven’t been able to do that for 10 months. Ok they still have to take us with them until another carer is trained up but still….it was really nice normal family time. We were good as gold too.
We sat on mummy and daddys knee at the table, dancing and singing to the songs until the food came, we sat in our pram at the table whilst mummy and daddy ate their dinner and because they kept talking to us we were happy to watch, when they had finished we got back out to sit at the table with them. When we are bigger mummy says we can sit in their highchairs but they aren’t very baby friendly like ours at home with higher backs and a snugger fit.
When mummy got ready that day she didn’t realise she looked so tired, until now looking back at this photo.
We lived for the weekends with daddy…It was really tough for Mummy when Daddy went back to work because not only was she having to manage both of us (like any other mummy does) but she had to bare the anxieties and the pressure of caring for two poorly babies by herself, especially Rory, having experienced Rory’s windpipe collapsing twice, once when she was on her own with us both, having to find someone to care for Austin and get Rory to the hospital, him stopping breathing and ending up in Resus….well….that kind of thing doesn’t leave you. Mummy has a lot to carry on her little shoulders every day. Weekends when Daddy is home is special time not least because we all get to spend time with Daddy but Mummy can share the worry and the responsibility of caring for Rory.
Just look at that hair! 🙂
Auntie Vic & uncle Nath fed us too, and she ended up covered in vomit. Daddy judges a good day based on whether mummy and us are in the same clothes as when he left. Most of the time we aren’t!
A standard feed is pretty much a battle field. We both vom because of the reflux and especially when we are poorly. Mummy has to somehow suction Rory and manage his coughing fits whilst keeping Austin happy when he’s hangry. It is exhausting and stressful too. For everyone involved. It’s not unusual for one of us to have coughed or vommed ourselves to sleep. So then mummy has a sleepy baby and a hungry baby and one pair of hands. The postman and hospital delivery van ALWAYS come at dinner time. The postman knows to come to the window and not post anything because that way Beau Jangles doesn’t bark and wake one of us up and make the situation a whole lot worse. The TNT man has also been known to squeeze a box through the window because Mummy cannot physically hold a sleeping baby, feed a hangry baby and hold Beau Jangles as well as opening the door, scribbling her signature and receiving big boxes of medical supplies. To make the situation a whole lot more dramatic, Mummy usually ends up sat in her underwear with a pile of clothes on the floor, with sick everywhere. Glamorous hey!!!
In other January news….(pictures in collage below)
We attempted grown up finger food on our new grown up plates from Auntie Nat & Big T. It was so tiring chewing all of the food that we both fell to sleep mid way through the meal.
We had a visit from Louie, one of our friends from Barnsley SCBU. It was really nice to see him. Mummy really enjoyed spending time with his mummy too because she understands that being a mummy to an extreme prem and a poorly baby too can be different and hard. Mummy sometimes finds it hard to be around ‘normal’ mummy friends because she feels like they have nothing in common. Mummy feels robbed of all the nice stuff (conception, pregnancy, birth, almost everything nice from the first year) and often finds it hard to listen to their moans about teething, lack of sleep etc when Mummy would swap in an instant for the normal mummy life she never had and won’t ever experience and so having Louie & Charlotte around to play was good for all of us. When Mummy is tired all of this gets to her more than usual but more often than not mummy manages to shelve all of this and plod on just being grateful to have us both here, and home. The rest of it is just details really. She must kiss us a thousand times a day and is always smiling, so she must be ok really. yeah?
We are starting to get really big and strong now and like to sit with a little help in case we face plant, we like to stand and look around. Nannie Di says we are like meerkats. She bought us balloons again to play with. They kept us entertained.
Both of us managed to roll over and we are picking everything up now and eating it. Everyone tells Mummy that she will ‘know about it’ when we are mobile, but the truth is Mummy is looking forward to it. Even to go from the living room to the dining room is 4 trips, once with each twin, once with suction equipment and once to go back and tidy up where we have been in the living room. At least when we are mobile we can all go together, help tidy up and carry stuff. Just like that. haha!
Mummy managed a cuddle with us both on the sofa (& a selfie to proove it) and so did Daddy when we were poorly.
Lots of people ask how mummy keeps a tidy house whilst taking care of us both, and below is a picture of Austin helping mummy wash the pots….thats how. 🙂 And the fact that she doesn’t stop for a minute….EVER! For the twin Mummys who have messaged us on the blog asking for a blog about twin routines, mummy hasn’t forgotten and will blog soon. Promise!
Auntie Charlotte likes to visit on her days off. She loves to play with us and chat grown up stuff with mummy. She is really good with us.
Mummy is using her teacher skills to train up Nannie & Grandad H and our Godparents. Mummy and Daddy aren’t able to leave Rory until someone is trained. It is very tiring looking after Rory with all of his needs and lots of Mummy’s and Daddy’s have special carers in to help. Mummy and Daddy don’t want to have carers and so they take it on all by themselves. The hospital runs a training programme which is quite intense and the nurse doesn’t have much time to train lots of people so Mummy decided that she would hold a couple of information sessions, she turned our puppet into a trachy doll and delivered a lesson all about Rory. The idea is that when someone feels confident enough to be assessed, mummy will book them in with the nurse and then if they pass the course they can help out with Rory (and Austin too). It is a really big responsibility looking after Rory and mummy is very lucky to have friends and family willing to train although they have been honest that they might not be brave enough when it comes to the tube changes and the life support. Looking after a baby with a vulnerable airway is HUGE!
But all the same, Mummy enjoyed having the grown ups round, she put a tea urn out with biscuits and poly cups because Daddy was upstairs looking after us and Mummy didn’t want to have to wash ten tea cups. haha! She did a powerpoint with group activities, videos, discussions and had all of the equipment etc for everyone to look at.
Hopefully someone will complete the training in the next few months and mummy and daddy can venture out somewhere local for tea and get a break. They won’t ever leave Rory for long or go far away from home because if there is a problem they will need to come straight back but at least if they can go out for tea every now and then, or walk the dog and spend some time together then they should get their wind back to face another challenge. Who knows when we will end up in hospital again, it could even be today, you just never know. So whenever we are having a good stretch is is important to refuel so that Mummy can face the next hurdle that is thrown at us.Mummy and Daddy have accepted that there are going to be a good few years of this. Rory saw the consultant about his trachy in January and he said that because everything seems to be doing ok, they don’t want to go to theatre just yet and so will keep an eye on him. He needs to be 10 – 12kg, have 9 months without an hospital admission and his laryngomalacia (floppy airway) have sorted itself out before the consider a reconstruction. The problem is that because Rorys collapse was so severe, they wouldn’t want to reconstruct until the floppy airway below it has strengthened by itself because the new airway would fail under all of the pressure. Mummy asked Dr Raavi straight if Rory would have the trachy forever. Dr Raavi said he aimed to get it out as soon as possible and it could be anywhere between the ages of 2 and 7 and a reconstruction is not always successful first time. So we have a long way to go yet.
We managed a few walks out locally (which mummy really enjoyed) and another baby massage session. Mummy managed us both all by herself again although at one point she truly did have her hands full with Austin lay on her knee, feeding, with her chin holding the bottle whilst suctioning Rory through a coughing fit on the floor.(Sadly because we have been poorly we never finished the course and so we didn’t get to graduate either) Lots of things have changed for mummy since we were born and she has given up lots of her identity. She was always in control and didn’t rely on anyone and she is clinging on to this as best she can. She is determined to do it and although she understands that Rory needs 1:1 care when he is poorly and will ask and accept help when we are unwell, she tries to do as much of it as she can on her own when we are well. She doesn’t make a deal out of going out with us both to the park, shops, hospital appointments and sometimes even takes Beau with us on her own, despite it being a challenge….that is the fun. She loves the challenge.Mummy always gets comments when she is out and about;
‘You’ve got your hands full haven’t you love’
‘God i’m glad we only had one’
‘I don’t envy you love, ones hard enough’
Mummy has gained some really good responses including;
‘My heart is fuller than my hands’
‘I’m glad you only had one aswell with that attitude, I feel blessed to have two’
‘what did you find hard?’ they usually can’t answer, or say something about sleepless nights, Mummy usually laughs it off or tells them it could be worse, we stay up through the night with Rory’s trachy, which they usually haven’t noticed and then they panic and scurry off’
The amount of attention we get though is unreal. Twins are just so interesting to everyone, it takes forever to get anywhere and people walk past and then crane their necks round to look at us. Mummy and Daddy say it feels like they are constantly being stared at.
I think Mummy finds it hard sometimes though because she is not only a twin mummy, she is a carer to twins with health challenges, especially Rory. There is a difference between being a Parent and caring for somebody who is poorly. Mummy never thought of it like this until a Dr commented on how good a job Mummy was doing and how pleasant we were and that being a carer is different to being a parent.Mummy is obviously both. It is emotionally and physically draining. Mummy feels like she has been drained of everything. If the IVF wasn’t demanding enough, being hospitalised during pregnancy and then giving birth to us early and all of the stress and worry during the 99 days before we were allowed home and then on top of that the months and months we have spent in and out of hospital. Nobody would blame her if she had the odd meltdown from time to time, or if she considered resigning altogether (she realises it doesn’t quite work like that being a Mummy) she is desperate for a break. Even just an hour. She tells Daddy all of the time that as much as she loves us, she needs time out, but she literally cares for us 24 hours a day, every day. For the past 3 weeks she has even slept with us. Because there is two of us and Rory cannot be cared for by anyone else, even when people come round to visit, or Daddy is home, she is still on duty. Sometimes she can be on her own with us, stuck inside because we aren’t able to go out, for 12 hours and they are long days, sometimes in that 12 hours she doesn’t even get time for a wee or lunch. no joke!
Mummy really appreciates it when people visit because it breaks up the day and provides some form of adult conversation. Literally everything mummy does is for us, she doesn’t even watch adult TV, we watch an hour of milkshake in the morning and then we play in the other room all day, so mummy doesn’t even know what is happening in the world. haha!
About 3 weeks ago we both got poorly again, the tests at the hospital showed 3 respiratory infections. They were viral so although antibiotics were given to prevent bacterial follow up infections in Rory, we had to fight them ourselves, this meant mummy and daddy going back to 24 hour shifts, so for the past 3 weeks mummy and daddy have took it in turns to do 3-4 hour shifts on the sofa bed caring for Rory. There is only so long a human being can survive on 3-4 hours broken sleep. Daddy only had two days off work when it was impossible for Mummy to manage us and we were hospital bound. Other than that Mummy has struggled through with the odd helping hand here and there, Nannie & Grandad H were both unwell and off work and so they couldn’t help out in case they gave us extra bugs and so Mummy has literally been on autopilot. She has been super tired but somehow still managed to keep two happy boys out of hospital (syringing water into Rory to prevent dehydration and another episode of ketosis) and a clean and tidy house. She even nursed Beau Jangles who had a severe fit (25 minutes long) and didn’t come round until Mummy carried her in from the garden in the rain and put diazepam up her bum. Mummy took Beau to the vets and she now has medicine to stop her fitting. hopefully. Another stress. So….mummy does resemble a robot, is super run down and subsequently had her own dilemma with a suspected case of shingles. Is there any wonder?
In other hospital news (from the 13 appointments we had in January) we have had our last RSV jabs as the RSV season draws to a close. Hopefully we can keep out of hospital for a while now. It will soon be March and we can start living life a bit more normally. Mummy has booked out Baptism for March and Birthday Party for April and so hopefully we have lots to look forward to.
We also had a heart scan to check on the open ducts in our heart. Austin was discharged but Rory needs to be seen again as the pressures in his heart were at the wrong side but this could be because of his collapsed lung. Auntie Nat came with us, it was fun.
Beau Jangles was pampered, Lou & our friend Katie visited, we had lots of play time at home because we were poorly and couldn’t go out. Our only trips (pictured below) were to the hospital and for car rides to the petrol station so that we would sleep, mummy could have a minute and a sandwich meal deal before she collapsed.
If you would have asked us this morning how things were, we would have said we were feeling better. Obviously it takes us a while to shift it from our chest but we were feeding etc and doing much better so Mummy and Daddy thought we would brave meadowhall for an hour to grab some essentials. Well…..since returning (well actually we didn’t make it home, ended up sat in the car in an industrial estate off the motorway with two unsettled little boys, Rory having a massive coughing fit and still, 6 hours later, struggling to clear secretions from his nose, mouth and trachy. Mummy and Daddy are so concerned that they are going to cancel a hospital appointment tomorrow (not worth the risk of going out in the cold or mixing with hospital germs) and even sitting up through the night in case Rorys trachy blocks again and because they are so tired they might not wake up this time and save him. Harsh but real!
When thinking about the positive parts of January (& early Feb) we have been to the tropical butterfly world to share Nannie and Grandad Newbs Christmas present and we have been lucky enough to have lots of visits from our Godparents. Big T was using us as weights and Nat (the baby whisperer) had lots of cuddles. Auntie Chlo & Auntie Mandy came and played with us and Auntie Vic & Uncle Nath seem to have done lots of feeding. Uncle Craig and Calum came to help Mummy & Daddy because we were so poorly that we wouldn’t be put down and there was sick everywhere. Uncle Craig rubbed Austins tummy whilst Calum stroked his hair. Uncle Craigs other friend Cookson helped Mummy design and print our invitations for our Baptism and Birthday party. Nannie had to come rescue Mummy one day too because Austin had vomited everywhere and Rory was feeding (he hadn’t fed in a fortnight so Mummy wouldn’t disturb him) nannie & Grandad H have both been poorly but besides from this have made their usual visits or had a facetime chat. We are really lucky to have such wonderful family and friends. Thank you.
Can you believe we are almost 1? Even more exciting, 15 days until March when we can say Hello to the world and try and be normal babies, catching up on what we have missed out on in the last year!
BRING IT ON!!