My ex 25weeker twins boys turned 3 last week. Just a wee look back at the boys birthday week each year.
Posts from the ‘Life’ Category
This blog has taken over a week of research to do and I must admit a lot of procrastinating. I think mainly because this area of the boys development scares me. They will be 3 next month and don’t speak. Logan is classed as non-verbal and Lewis has always been making noises and sounds after the SALT (speech and language team) got involved but yesterday he said mummy clear as day whilst looking at me for the very first time. Over the festive break he started saying bye-bye whilst waving. The boys did babble when they were around 9 months then after Both were very unwell with bronchiolitis they just stopped making sounds all together. No babble. Just silence. They spent a year in silence until Kirsty our therapist started coming out to the house every 2 weeks. We had Kirsty for 1 year and I can tell you she made a massive difference in our lives. She taught me that early communication skills do not include speech. There are steps to reach before then.
Most kids start to babble then make sounds then begin to say words. Not needing to give extra thought into the processes that begin to work before actual speech occurs. As you may have guessed it my boys like to be different and we had to start from the complete beginning. From birth to 5 is a critical period for detecting communication difficulties & providing intervention, but studies show as many as 64% of parents are unaware of the early warning signs of speech & language disorders. Unfortunately, parents are not alone. Studies show that despite being one of the most common disorders of early childhood, communication disorders are also the least well detected among pediatricians. More often than not, valuable time is lost between the time a weakness is suspected and a child receives the assessment and intervention services he or she needs. In this respect though we have been very lucky. By the simple fact that the boys were born so prematurely all eyes have been on them since the moment they were born. They were the neonatal consultants, neurodevelopment consultants as well as physiotherapists and occupational therapists until they reached the age of 2. They were then transferred over to the community paediatric team who have seen them twice since June 2017. As well as the before mentioned SALT intervention due to difficulties with weaning and eating solid foods. All those experts collectively have kept a very close eye on my boys to watch for and treat any delays that occurred. Both boys suffered from brain bleeds when they were born and as much as we know they are delayed due to Prematurity we don’t know how much of this delay is due to the brain bleeds.
So what can parents do to help their children whom they suspect has a speech delay? They should do some research and educate themselves on the signs of common speech and language disorders in children between birth to 4 years of age, an important stage in early detection of communication disorders. No one professional will serve as a better advocate for your child than you, the parent. You know your child better than anyone else in the world. If your gut tells you that something just isn’t right trust your instinct. There is a reason a mothers intuition is so important.
Signs of a Language Disorder:
• Does not smile or interact with others (birth and older)
• Does not babble (4-7 months)
• Makes only a few sounds or gestures, like pointing (7-12 months)
• Does not understand what others say (7 months-2 years)
• Says only a few words (12-18 months)
• Words are not easily understood (18 months-2 years)
• Does not put words together to make sentences (1.5-3 years)
• Has trouble playing and talking with other children (2-3 years)
• Has trouble with early reading and writing skills (2.5-3 years)
If a communication delay is suspected as it was with my boys early intervention is key. Seek advice from your health visitor and/or nursery key worker ASAP. If no one listens to your concerns and continually fobs you off by saying your are too young to be assessed etc just keep raising your concerns. Don’t stop until someone listens. You are not alone.
If you have any helpful hints or tips on how to help your child with early communication difficulties please feel free to comment. Let me know your personal experiences and how you managed to secure the help your child needs and deserves. Please feel free to ask any questions you may have.
As always. Stay cool.
Scottish Twin Mamma
I hope everyone had a lovely day celebrating Christmas with their loved ones. A special thought to our nearest and dearest who had a party in heaven to celebrate the birth of Jesus with us.
For our current NICU mums I hope you managed to enjoy ur special day with your little miracles. Celebrating in hospital isn’t ideal but just think of what next Christmas will bring if health willing everyone is at home together. Father Christmas still stops by to check in on the babies in hospital. As we know a preemies fight does not stop when they are discharged home. A special prayer goes out to one of my cyber mum friends who has twin boys the same age as mine. Both boys spent Christmas in hospital seriously unwell. At one point they were in different hospitals. I can not imagine the pain and heartaches those mummies have felt this year and I’m guessing it wasn’t the most festive. Massive hugs prayers and good thoughts going out into the universe for those two fighters.
Due to their developmental delays my boys still didn’t really know what was going on except they seem to have new toys to play with. Unsure if this is controversial or not but I did buy my boys twin dolls and a buggy. My family weren’t too keen but I think my Lewis is destined to be a twin dad someday as at the young age of 2 he is smashing it!
Logan even seems to love the dolls and has been cuddling them – something he has never done with teddies. He has also been feeding them himself and me with the baby bottle that came with them. Again this is brand new imaginative play for him so I feel I did the right thing getting them. In this day and age we shouldn’t be worrying about gender stereotypes anyway. We should just love our children and try and get them what they need to develop and grow. Of course also what they want as a wee extra special treat!
Merry Christmas everyone. Hold your babies tight and thank all that is good you have your babies to snuggle In tight too.
Scottish Twin Mamma
Ok I’m on the hunt. As many of you know my husband completed tough mudder in 2015 and raised £2500 to buy a twin cot for the NICU in wishaw general. This cot was amazing and it has been scientifically proven to improve the health of the sicker twin when Both twins are placed back together.
What I want to know is have any you gorgeous lot had your twins in a shared cot whilst in hospital?
Do you know anyone who has? What are your thoughts on the shared cot?
Please get in touch.
Scottish Twin Mamma.
Every parent worries about the risks of ill health to their unborn or newly born child. In fact, at 35 years old I’m pretty convinced that my parents still worry about my health and now of the health of their grandchildren. My GP informs me new mothers make up the bulk of their emergency appointments due to their child just not being quite right or being off some how. Rightly so, the new mothers seek medical advice to put their worried minds at ease.
Since the boys were born at 25 weeks gestation I have had my own and very personal set of worries on my mind. It started with the immediate health worries. First and foremost with Lewis and/or Logan survive the next hour,day or night. This happened on so many different occasions whilst in the NICU it almost seemed to become the norm. When we got home from the NICU the boys were still oxygen dependant and remained that way through out the winter months fighting off the usual winter bugs such as chest infections and the Noro virus, however, with possible deadly consequences for my boys.
As the boys have went from physical strength to strength there has always been this niggling worry that their neurodevelopment May be delayed or indeed impaired. As science has progressed, the survival rates for premature babies has dramatically increased especially among the smallest and sickest babies. Studies show that when survivors of Prematurity reach school age they are 50% more likely to exhibit signs of significant higher order neurodevelopmental impairment. This includes difficulties in learning, behaviour and executive functioning often requiring additional needs and special education support. Recent reports go on to suggest that this increase in atypical socio-behavioural functioning in the premature survivors population is strongly suggestive of Autism Spectrum Disorders (ASD).
According to the NHS website Autism spectrum disorder (ASD) is the name for a range of similar conditions, including Asperger syndrome, that affect a person’s social interaction, communication, interests and behaviour. In children with ASD, the symptoms are present before three years of age, although a diagnosis can sometimes be made after the age of three. It’s estimated that about 1 in every 100 people in the UK has ASD. More boys are diagnosed with the condition than girls.
There’s no “cure” for ASD, but speech and language therapy, occupational therapy, educational support, plus a number of other interventions are available to help children and parents.
Some children with ASD need to stick with routine as even the tiniest of changes can trigger tantrums, some children may engage in repetitive activity such as turning light switches on and off or neatly lining up their toys. A massive worry I have personally is even though the professionals are concentrating on Logan as they believe he has ASD Lewis also exhibits these symptoms as well. Many children with ASD also can go on to be diagnosed with ADHD or Sensory Perception Disorders.
The reason, I have found in articles that links ASD and Prematurity so strongly is that the brain develops best in the womb. When the child is born extremely early such as before 28 weeks the brain development is altered and almost wired differently to that of a full term child. This is due to the child being exposed to so many stressors during a critical stage of development. Researchers go on to explain that although ASD is not a curable condition early intervention with speech therapy, OT and behavioural/education support we can help our children move more into the mainstream of society.
Early signs of autism to look out for in babies and toddlers are:
If your baby or toddler doesn’t:
• Make eye contact, such as looking at you when being fed or smiling when being smiled at
• Respond to his or her name, or to the sound of a familiar voice
• Follow objects visually or follow your gesture when you point things out
• Point or wave goodbye, or use other gestures to communicate
• Make noises to get your attention
• Initiate or respond to cuddling or reach out to be picked up
• Imitate your movements and facial expressions
• Play with other people or share interest and enjoyment
• Notice or care if you hurt yourself or experience discomfort
I’m sure this is a topic I will go to familiarise myself with and write more about. However, if anything I have written has struck a chord with you in regards to your own child then I would advise contacting your GP or health visitor. Whilst it is important to remember all of our children develop at different rates so some children may take longer to sit up unaided walk, talk or meet their developmental milestones I have found parental instinct can also be key. You know your own child and if you feel that there is a possibility that the delays your child are experiencing aren’t normal then it is best to seek medical help and take it from there.
I hope and pray that my children grow up to be healthy and happy individuals. We will deal with whatever the universe throws at us. The only one thing I know for sure is that I love my children more than anything in the world and no diagnoses of ASD or similar conditions will ever change that. The research does show that there is a massively increased risk of ASD among pre-term children. But that is all it is. It is not a definite diagnosis, it is a risk. At the end of the day our preemies are warriors and they will continue to beat all odds and surprise us at every step of the way. Nothing will change that. Just as nothing will stop us as parents fighting for our children and loving them unconditionally.
Scottish Twin Mamma
I appear to be known in my friendship circle as the crazy cat 🐈 lady. I hold this title proud and Love all animals big and small. I did have 4 gorgeous Cats however, this weekend saw the unexpected death of one of my fur babies. I rescued him and his litter brother when they were 6 weeks old and loved them very much. All my kitty cats are rescues. Sadly, Paddy passed away from a suspected stroke and joined max his litter brother at the rainbow bridge. I was devastated and even tried mouth to mouth but to no avail. Now, some people may wonder why the death of ‘Just a cat’ could cause so much upset and heartbreak when there are so many different bad things happening in the world at this very moment. Or even when I have been there beside Lewis and Logan when they have been very near death, why would the death of an animal upset me so much. Well I shall tell you.
Paddy & Max
Even as a child I loved our furry friends. My mother always told me to never trust anyone who didn’t like animals as it spoke a lot to their character. As I grew up I adjusted this slightly as there are many people who do not like animals but would never wish them harm. So as long as you couldn’t hurt an innocent animal then I could trust you.
My fur babies have always been seen as and treated as members of our family. We tried for 10 years to have children and through every failed attempt of IUI, IVF or every month when that pregnancy test said negative I had my fur babies to comfort me. They could always tell if I was sad. Paddy would come and give me a head bop settle on my lap and purr away even if his fur was damp with my tears he would never leave my side. When we were lucky enough to become pregnant, Paddy seemed to instinctively know and would cuddle in on my tum. The first Time I felt the boys kick it was were Paddy was lying on top of me and he obviously felt something too as he looked at me like ‘what the hell was that? ‘
The amount of people who expected me to re-home my cats when I was pregnant astonished me and I soon discovered many people have a fear of pets especially cats with young infants. When the boys arrived 15 weeks early then even more people approached me and said ‘so who will take the Cats for you when the boys come home?’ The look of disgust I would get is unexplainable.
Preemies are at higher risk of having respiratory issues such as chronic lung disease or asthma. Both of which my boys have. The negative comments I received after explaining I has no intention of re-homing any of my pets included, you will give the boys a higher chance of allergies, do you want your children to have asthma? I had already done some research into this area and found that by having a pet in the home I was likely to reduce the boys risk of developing a pet allergy as they will have been exposed to the proteins that are found in the pets dander and saliva at an early age and will build an immunity to it. Figures show that out of the 60% of families with premature children that have pets only 6% of the children become allergic to their pets.
Paddy chilling with his ‘baldy’ brothers
Asthma has caused more debate however, recent figures also show that pet ownership does not increase the risk of adults or children becoming asthmatic. Also, asthmatics can have pets. They just follow some simple rules in order to ensure pets are not the cause of any asthmatic flare ups. This we already knew as my husband developed asthma as a child. There are plenty of things to try before re-homing a beloved pet because of asthma such as hoovering often, cleaning hardwood floors, keep pets out of bedrooms, change bed linen frequently, keep pet Well groomed and not allowing the children to change the litter trays. To me this is all common sense and should be done anyway even if you do not have a pet.
It is well documented that Cats can also bring a health benefit to the adults in the home.
• Cats are low maintenance and petting a cat can have a calming effect of adults. This helps ease stress, lessen anxieties and reduce blood pressure.
• Studies show that cat guardians are less likely to suffer from a stroke compared to guardians of other pets.
• The therapeutic benefits extend to both adults and children. In adults, the calming experience of petting a cat releases a hormone called oxytocin which is known for inducing feelings of love and trust. A cat does not judge so allows for a person to speak freely or grieve. Almost like a free therapy session. In children, studies have shown that Cats can help children with autism be less anxious, and calmer.
• Adults also get a boost of their immune system.
• Cat guardians have a 30-40% less chance of having heart disease or a heart attack compared to their non cat guardian companions.
Paddy purring and cuddling into his mummy after I had broken my humerus. I was crying and in a lot of pain and he never left my side.
l of this in mind, yes I will grieve for the loss of a big part of my family. Paddy taught my boys what the words nice and gentle meant. They would clap him – with supervision of course, and I would repeat the words over and over whilst moving their hands. Now when they come across any furry creature and wish to pet them all I say are those 2 words. Nice and gentle and the boys will make an awww sound and pet gently. My boys can’t speak and don’t understand simple language such as yes, no or stay, yet they know and understand how to be kind to an animal. It was Paddy who taught them that.
Jess my Aunts German Shepherd looking over the boys whilst they have a bath. She and the boys have a wonderful relationship stemming from what Paddy has taught them.
So in reply to my original question. Do fur babies and premature babies go together? Yes of course they do. Just use common sense, never leave any pet alone with your children and keep your home as clean as you can. All things people already do. Before you rush out and adopt a pet make sure that you have the commitment there that if you become pregnant you will find a way to make it work and keep everyone safe. It is a very doable task. With so many pets in shelters awaiting their furrever home I would always recommend adopting and not shopping. My cats have not only taught my boys social skills but have helped boost their immunity as well as encourage them developmentally. I loved growing up with my furry family and I hope my boys will grow up with the same love and kindness in their hearts.
I hope you are running free over the rainbow bridge playing and cuddling with your brother Max.
I love you Paddy cat. Thank you for being such a kind and wonderful fur baby. I will miss you always. Big kisses and cuddles. Mum. Xx
It was this time 3 years ago that my hubby and I announced our very long awaited pregnancy news and for it to be twin news we were just taken aback. I was very much at the stage where I never thought I would be lucky enough to become pregnant with 1 child and here we were announcing 2!
In my short time as a mum I have experienced my fair share of high five Mummy win moments and I have also experienced the epic mummy fails. These are all part of the journey to parenthood. Wins and fails alike should be celebrated pretty much because it shows at least we are trying. Ironically, it’s more likely to be the fails that allow us to bond with other parents with the mantra ‘there is no such thing as a perfect parent’.
On social media pages such as Facebook and Pinterest you will find the perfect parent brigade in their masses telling and showing us all of their Mary Poppins style ideas that they have done with their children already that day and it’s only 10am. Whereas, I’m very lucky if I have fed my boys and changed them out of their pj’s by that time in the morning. 😃 Sometimes though, their ideas just might work for us normal folk.
At the weekend I decided I wanted to do something different for my boys lunch rather than the mundane routine of our norm. I had seen a few different posts about chopping up hot dogs and spiking them with uncooked spaghetti. Well you would never believe it but it actually worked! I did mix in a little tomato ketchup so it wasn’t as dry but my boys loved it. I was met with a chorus of Yums and mmmmm’s as they were eating it. It sounds sad I know but usually with toddlers most of their food ends up on the floor. Not one bite of this simple lunch was spoiled. To say I was Well chuffed is a bit of an understatement. My husband even gave me a high 5! I took it, I didn’t know or care if there was a sarcastic undertone to it. I was and still am delighted.
Now for this one win I have had my share of fails, including the good old initiation of being peed, poohed or vomited on! Just the day before my epic 😃lunch idea the boys and I were attending a fellow twin mums boys birthday party. I was semi-prepared as I had bought the boys their cards presents and even wrapping paper. I’m a gift bag kinda gal but thought to myself ‘no, I’m gonna do it right’! Of course I did leave writing the cards and wrapping the presents until last minute which turns out to be another notch in my fail column. Most twin mums are disappointed if their twins share a birthday card, it personally does t bother me but can see their point. The children may be twins but they are 2 individuals and as such deserve to have their own card, after all they already have to share their birthday with each other. I bought the boys 2 matching cards. I didn’t initially pick up 2 identical cards then thought I’ll get them different cards but have a matching theme. So Both had peppa pig cards. Turns out I should have stuck with the 2 identical cards. We were already running late so no time to nip to shop and correct my mistake. Luckily for me my friend laughed and understood my mistake.
Even in my personal life I have experienced the wins and fails of life. Doesn’t all come down to whether you have kids or not. You can be a numpty whether you are a mum or not. Last week I had one such occasion where it started out a win, quickly turned into a painful fail but then turned itself around into a win again. I thought to myself since I was going back to work I would put on a charcoal face mask and use the charcoal powder to whiten my teeth. I did not know the face mask is only supposed to be used on the t-zone area! So during a live Facebook broadcast I took the mask off and let’s just say I’m lucky I have any eyebrows left! Positive though is my skin looked amazing.
Life is all taken very seriously nowadays. We should celebrate the little things and laugh at the failures. At the end of the day it is through our failures we learn and become a better person. Let me know what wins or fails you have experienced. It might just make one person feel better about their day.
Scottish Twin Mamma
I’m not gonna lie. I always wanted twins. It was always something I felt I would do. Be a twin mum. If you look on social media you will see loads of articles directed towards that woman who also wants twins and it gives what they think is helpful hints and tips on how they think the best way to conceive twins is. FYI, there is no science behind claims that different sexual positions or changes in diet will make you more likely to conceive twins. When a stranger approaches you and starts bombarding you with questions you will inevitably get the same questions just worded differently over and over again. To this day, this has never bothered me but by listening to my twin mum peers it seems it can annoy and upset most mums of twins. So it’s probably best just to avoid them all together.
‘I really hope I have twins one day”
By saying this it’s just like you are saying that having twins is a breeze or a walk in the park. This was something before having my boys I never considered. I did want twins and I knew it would be difficult. It never came from a bad malicious place so I assume when strangers say it their intentions are also good. Consider this though. That stranger you approached in the supermarket has just had the night from hell. She has had to play swapsies with her children all night to attend to the baby with the most needs at that time. She has had no sleep and no help with the constant round robin of feeding, changing nappies, changing clothes due to wetness or sickness, singing lullaby’s to help settle baby to sleep. She realises first thing in the morning that she has ran out of essential groceries so attempts to nip out to shops still wearing her own clothes that had been peed on and vomited over. All she wants is to get in and out of the shop as quickly as she possibly can and then you innocently make this remark. This will make that physically and emotionally tired mum feel like she is failing. It should be easy. Everyone wants twins so it can’t be the hard option. Can’t it? Why am I not finding it easier?
‘I know what you mean. I have 2 kids a year apart and it’s just like having twins!’
I think out of all the passing comments strangers have made to me, this has been the only one which really got my back up. No it bloody Well isn’t ‘just like having twins’. Unless you have had twins then go on to have 2 singletons 1 year apart then you will never know what it is like having twins. Just as I will never know what having 2 children very close in age feels like. Both come with their own set of bonuses and Both come with their own set of negatives. You will never know the heart wrenching feeling of picking one crying starving child over the other crying starving child. You will never know what it is like to try and juggle 2 colicky babies at the one time. You will never know what it is like to be trapped like a prisoner in your own home for weeks on end because when they become mobile it is near physically impossible to take the twins anywhere on your own, as they will inevitably decide to run in 2 opposite directions at the one time and be of an age where they don’t know what stop means or worse, they are an age where they just choose to ignore you. I can’t say one scenario is harder than the other as I haven’t experienced Both, but do you do what? It isn’t a competition to see who the most hard done by mother is. Although some women seem to thrive on competitive agendas. I will never know what it is like to be pregnant whilst caring for a young child, I will never know what it is like to attempt to entertain 2 children who are a year or so apart in development. Maybe as a community of mothers we could try and support each other rather than tear each other down.
Are they natural? / Do Twins run in your family?
Oh dear god! Where to start with this one. I personally don’t have an issue with people asking if twins run in the family but a stranger is pretty much asking you about your sex life and fertility status. The ‘are they natural?’ I always wanted to say ‘no, actually my boys are plastic, but thanks for asking.’ Would you approach a stranger of a singleton and ask if the baby was natural? Or even conceived ‘naturally’? No, you wouldn’t because it would be downright rude. Back in 2015 Elton John called for a boycott of fashion house Dolce & Gabbana after the designers labelled children born via IVF ‘synthetic’. My boys were only around 3 weeks old when this hit the press and to say I was disgusted was an understatement. How dare anyone criticise these miracle babies worldwide. I truly believe the children conceived with the help of fertility treatments are miracles as they most likely would not have been born if it wasn’t for the advances of science. Yet, if it were up to them they would deny millions of people the chance to become families due to them feeling it is synthetic. No pal, I think you will find it is the material you use on the runway that is synthetic, not my children who are very much real flesh and blood.
I have always been very open with family, friends, work colleagues and the odd stranger about my fertility journey but most people are not like me. Most people like to keep their personal business to themselves. So what gives people the right to ask such personal questions? I can understand that twins and higher ordered multiples bring out the curiosity in people, even though there are more multiple births documented now than ever before is partly down to the advances in science and the availability of fertility treatment. However, the rise in multiple births could also to be attributed to older mums. Many women do not have their children now until much later in life, this can be due to many reasons, however, nature likes to throw a curve ball and if your older than 35 you are more likely to conceive twins because your body has produced 2 eggs in the same monthly cycle. In 2006, almost 5% of births in women over the age of 35 were twins and this increases to 20% for women over the age of 45. Comparatively, only 2% of women aged 20-24 had twins without the support of fertility treatments.
“So no more babies for you then?’
As it turns out I personally do not have a choice with this one due to the afore mentioned fertility issues, in saying that, if I could afford private fertility treatment I would go for it. I would love a bigger family. In society nowadays it is assumed if you have 2 children that your automatically done procreating. Especially, if you have 1 boy and 1 girl. Not even a generation ago bigger families were the social norm. My husband is the youngest of 7 kids with both his parents also coming from large families. I don’t know how we got to a point where seeing a family of 3 or more children is now considered large. Who has the right to say how many children any one family should have? Again, I go back to it is no ones damn business other than the couple that is having the family. There is no magic number of children to clock up to to get the perfect family.
“Twins? I couldn’t imagine anything worse/I wouldn’t wish that on my worst enemy!’
Cant believe I actually had to write this one down. I have had this said to me by strangers on more than one occasion as have the majority of my twin mum friends. Now for the rest of my points above I could say the strangers were genuinely well meaning and didn’t intend for their comment or question to come across as malicious but with this one??? How else am I or any other twin mum supposed to take it? It’s the hardest job I will ever do in my life, but it is the most satisfying job in the world. Just when you think you have reached your breaking point and can’t possibly take anymore crying, sleepless nights, double sickness bugs and the like those 2 wee innocent faces will look up at you with all the love they have in the world and it will melt even the coldest of hearts into a big bowl of mush. Just one look can do this to you. You have no idea how many times a tiny smile or hug has brought me back from the brink of despair. These closed minded folk don’t deserve the love and happiness that twins can bring into your life. They don’t have what it takes to be undercover superheroes. 😂😂😂
Scottish Twin Mamma
I am by nature a very romantic person. I always dreamed of my big white wedding and having 3 kids. 2 girls 1 boy. I dreamed of everything just short of a white picket fence. Now being a grown up I knew that life isn’t like a romantic movie and we don’t always get everything that we dreamed of, somehow though I always thought that certain aspects of each dream would come true.
I always wanted to spend time getting the nursery ready for my child and having all of my family together for my baby shower. I had visions of leaving the hospital loaded with my gorgeous wee baby, multiple balloons and gift bags that eager and generous family and family had brought with them to visit my cherub. Coming home to a full house decorated with balloons and bunting to celebrate this new tiny life we had brought into the world. As with any mother to be, I also had my birth plan already in my head waiting to discuss it with the midwives. Turns out the universe had other plans for this girl who lived in a romantic bubble. After 10 years of various fertility treatments we finally conceived who would turn out to be our 2 wee miracle babies. After a very complicated pregnancy. The boys were thrown into the world at Just 25 weeks gestation. I always joked that I had to wait 10 years for them but the wee to-rags couldn’t wait 9 months on me. I had to leave the hospital 3 days after their birth with no babies, no car seats, no flowers, no balloons, no gift bags, no full house, no decorations and certainly no celebrating. My heart was broken, I didn’t want to leave my boys behind in the hospital. I wanted them to be with me, I was their mother and they should be with me and my husband. After the boys fight in the NICU they finally came home. Yet still no balloons etc. They didn’t even come home on the same day. It was as if the world had made it its mission to turn everything upside down.
Throughout these months there were many comments made to me and I can guarantee you each and every single comment came from a good place. A place of love and compassion. It’s just as humans our words tend to fail us at times of worry and grief. So either the wrong thing is said or worse. Nothing is said at all.
So I have compiled a list of things that you should never say to a parent who’s child is in the NICU. This list is not exhaustive by any means, if there is anything you feel that should be added then please feel to leave a comment and tell me what else should be there.
- ‘At least he will be smaller for longer and you get to have a cute newborn for longer than other parents.’ I genuinely didn’t know how to respond to this one. But I could tell you one thing. I’d have given anything to have my boys born at a regular newborn size. That would have meant my boys were born at term and most probably healthy.
- ‘Oh, they just couldn’t wait to meet their mummy and daddy’ now as I said earlier, I have joked about the 10 years 9 months ratio before but really until you have watched your baby turn blue because they don’t know how to breathe by themselves yet then you will never know how hard it is to hear. They are basically saying your baby chose to fight for his life so he could just nip out and say hello.
- “You can’t keep wrapping them up in cotton wool’ Boy I heard this Time and Time again. Especially in the early months when the boys were on oxygen, now it seems to be rearing it’s ugly head again now they are nearly 3. As with any parent I will always put my children first. Yet people seem so shocked when you change plans at the last minute due to the wee ones being sick or refusing to go to a party where there are sick people just in case my boys get ill. If I hear one more Time ‘it’s just a cold’ I swear I will scream. “Just a cold’ could lead to breathing issues such as RSV, which could lead to my boys being incubated with a machine breathing for them, which could lead to death. So no, to a preemie mum, there is no such bloody thing as ‘Just a cold’
- “Don’t worry, everything will be ok’ As with most comments on this list, this is said from a good hopeful place. That being said they can also brush aside the very real fears that parents face. Nothing can prepare you for the first time you see your precious little bundle with more tubes coming out of their body than you thought could ever be possible.
- ‘I take it you are breastfeeding?’ This one was a very sore topic for me. I felt like a big enough failure that I couldn’t get pregnant without help, then I could make it full term, but to then be told I was not allowed to breastfeed after the nurses made such a big deal to tell me how important it was for my sons that they be given breast milk just made me feel so so low and like the biggest failure ever. I thought maybe I wasn’t supposed to be a mother after all. I still feel tremendous guilt over this to this day. I know deep down that a fed baby is best. I also opted for donor breast milk to give my boys the start I felt they deserved. I didn’t want them to be punished for my failures. It will take a very long time, if ever for me to completely forgive myself. So please, don’t ever just assume. Unless you know the circumstances, don’t ever just assume.
- “Wow, 1lb 7 and 1lb 11? You must have just sneezed and they popped out? You are so lucky you didn’t have to give to birth to 2 full size babies!’ I still find it difficult to see this comment as anything other than insensitive. Actually, this comment makes me want to scream. WTAF?????
- “At least you got to miss that really big uncomfortable stage’ I would have given my right eye to be big sore and uncomfortable to stop my boys from know the pain of needles and tests before they knew the touch and cuddle of their mum.
- “At least you get to go home and get a good night sleep.’ You never want to leave your baby in the hospital but sleep? Hell, when or if I ever get a good nights sleep again I will let you know.
- “When will the boys be normal and catch up with other kids their age?’ What is normal anyway? How dare you say my boys aren’t normal. Like any child they will do things in their own time. I will love them unconditionally no matter what their developmental age is. There are no crystal ball, NICU babies progress over the years at their own rate. The fact that they are alive and breathing is miracle enough. They will reach their own milestones in their own time.
10.Thank god that is over and done with.’ We are nearly 3 years down the line now and our journey still isn’t over. Many people assume that once baby is home that the NICU is a distant memory. However, many preemie babies are often left with long term health difficulties. Some of these will resolve over time, but many can be life long complications. The boys are at this stage just now. Many people feel they should be just like their peers and I have even been told to my face that the boys aren’t anything special. They are children and all children are special. I agree all children are special but not all children have had to face the uphill battles like my boys so yeah my boys are god damn special. We will be dealing with health issues due to their Prematurity for many more years to come if not forever. Our lives have been changed so much by having the boys and the likelihood is we will need to adapt and change our lives to suit our boys forever. Do you know what? I wouldn’t change the boys for all the tea in China.
Instead maybe say congratulations, celebrate the birth of a new life. Don’t be scared to do this because you fear the wee baby might not make it. As true as it is that not every baby makes it home from the NICU it is important to remember that every baby deserves to be celebrated. If you don’t know what to say, just say that. Don’t stay silent or worse say something that could be deemed as insensitive. Tell your friends you will be there for them whenever they want to talk. Make them a dinner for coming home from the hospital or offer to help with housework. Let them know that they are the most important people in their babies lives.
I wouldn’t wish our NICU journey on our worst enemy. If someone you know is currently going through their own NICU journey have a thought about what I have written above.
Scottish Twin Mamma