Slings & pregnancy

*I am not a medical professional nor am I giving advice in this post, just my experience. Please seek the advice of your health care professional or local babywearing consultant/sling library if you have queries or concerns*

I have carried Isabelle since she was a teeny tiny newborn. We have used most types of slings during her first few years (there are serious perks of volunteering at sling library!) and were mainly using wraps & ring slings when I found out I was pregnant with Isla.

As I have discussed before, my pregnancy was not an easy one; I had pelvic pain & bleeding almost continuously for the first 16 weeks, a problem with the placenta at 28 weeks and there were many concerns regarding Isla. I found it difficult to manage a toddler and the strains of the pregnancy. I knew it was very important to listen to my body and not push myself physically.

However, for me, it was also important that I continued to carry Isabelle. There were periods of my pregnancy where I didn’t carry her for weeks as I didn’t feel physically able to and other periods where I was fine. Most of all, I still needed to get on with things & if I didn’t have a sling, I would just have ended up carrying her in my arms so slings really helped both of us. Practically – Isabelle was used to being carried and it made ours lives easier, especially with Larry to walk. She was only 18 months so still too young to walk everywhere. Also it was something that settled her – for sleep, after we had been separated because of yet another hospital stay, for quiet time.

These are some of the ways of carrying that I found worked for us;
Ring sling & woven wrap – hip carry
– Back carry – ruck, double hammock
– A variety of buckled carriers

I used a buckled carrier (mainly our Connecta) until the 3rd trimester, when I started to find it uncomfortable & less supportive due to the angle of the waistband & my ever expanding stomach! An onbu is another option as it has no waistband.

I don’t carry Isabelle as much anymore after a long break when recovering from Isla’s birth and weak stomach muscles from 2 surgeries. Daddy has taken over that role and they love their Saturday morning walks with Larry in the woods! We usually have one each now, which is lovely (or on occasions both!)


Your local sling library or babywearing consultant will be able to help you find something suitable for your individual needs so do pop along & see them. There is also an excellent article here about babywearing in pregnancy.

 

Isla is ONE!

I cannot believe my amazing, determined little girl is one today. This week has been extremely emotional for me as I’ve been thinking back over her first year.

It’s definitely not been an easy one. We’ve contended with a NICU stay, separation, breathing difficulties, feeding difficulties, surgeries, hospital stays, sleep studies, scans, tests, cannulas, specialist bottles, feeding tubes, endless hospital appointments, Doctors & their ‘worst case scenarios’, hearing aids, genetics testing, awful reflux, food allergies, refusal to eat, weight gain issues. And that’s on top of adjusting to being a family of 4.

But above all of that, we’ve made some fantastic family memories. We went on our first holiday as a 4 to Disney, saw my brother & sister in law get married, celebrated Isla’s first Christmas and birthdays, had weekends away, zoo trips, farm visits, picnics, walks to the park & lots of laughter.

Isla is now 18lbs & 63cm long. She has no teeth (although she had her first tooth removed from her nose during lip repair!) She can clap & wave. She absolutely loves music & dancing. Her favourite song is “if your happy & you know it”. She loves cuddles, kisses and being carried. She’s tenacious yet laid back and a sociable, happy little thing.

I’m not hoping this next year is ‘better’ as that’s out of our control. I just hope it’s as full of love & laughter as this year has been.

Happy first birthday my incredible Isla 💕

 

 

 

 

Exclusive expressing…. a year on!

I’ve previously written about my experiences of exclusively expressing for Isla as she couldn’t breastfeed due to her cleft.

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Somehow, this week we’ve made it to a year and, rather fittingly, it’s National Breastfeeding Celebration Week. We’ve overcome huge hurdles & donated 100000ml (3520oz) of milk in total this year. So this post are my five top tips for exclusively expressing!

1 – Make sure you have things to make your life easier!
A good double electric pump is essential. I love my Spectra S1 but this website was useful to compare. A hands free pumping bra has meant I can carry on looking after or playing with the girls whilst expressing. Reusable storage bottles save a lot of money as storage bags are expensive. In the recent hot weather, my cool bag has been invaluable in keeping milk at an optimum temperature.

2 – Accept ANY help!
I’m a stickler for being stubbornly independent but I’ve learnt (sometimes the hard way!) that accepting help doesn’t mean I’m not capable or competent. Even ‘little’ things like someone cuddling the baby while you pump is a huge help. And if people want to do the bigger things, let them! There’s no way we would have got this far without the help & support of amazing friends.

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My little ‘helper’!

 

3 – Never stop on a bad day
There have been many, many bad days. Days where I’ve had to choose to pump over cuddling, days where I’ve been very ill with mastitis, days where I haven’t had enough hands to sort both girls & pump, days where I’m fed up of having such a restricted diet. I’ve felt like giving up on many many occasions. But I’ve always said one more pump, one more day and here we are!

4 – Join a Facebook support group
Exclusive pumping is a funny one; a unique situation. So I was pleased to find a few Facebook groups where I could ask questions & get some support on those rubbish days! A few I’ve found useful are Exclusively Pumping UK Mums and Exclusively Pumping for Cleft Cuties. There are also a wealth of online breastfeeding support resources; I particularly like La Leche League & The Breastfeeding Network for evidenced based information.

5 -Set small goals
When I was pregnant, I always aimed to pump until palate repair. But I realised that was quite a challenging goal so I set myself mini goals- 2 weeks, 6 weeks, lip repair, 6 months, palate repair. Each time I hit a goal it felt like a huge achievement & gave me more motivation to keep going. Now we’ve hit 1 year, I’m wondering what my next goal should be?!

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Life with a feeding tube 

Isla has had a feeding tube at two separate points in her life so far. When she was born, she was in the neonatal unit and couldn’t feed at all initially so as well as being on a glucose drip, she also had an NG tube placed. Babies with a cleft palate often have no suction which means they need specialist bottles & feeding methods to be able to feed by themselves. Isla struggled with this more than some and feeding really tired her, initially expending more calories feeding than she was eating.

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Isla as a newborn

 

By 5 weeks, she was bottle feeding so well that the tube was gone. Lip closure surgery came & went with normal feeding limitations which slowly built back up over the coming weeks. And then palate repair hit us all like a tonne of bricks & Isla hasn’t been able to feed normally since.

We often get asked how Isla’s tube works. It has a ‘screw top’ end which we then attach a syringe (or extension tube attached to a syringe) to. Milk is put into the syringe & goes down the extension and then through her tube. It is taped to her face to stop her pulling it out & we have recently found some more ‘child friendly’ tape (made by another Mum of a baby with a cleft) which suits Isla’s sensitive skin and Isabelle enjoys choosing each day’s picture!

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An NG tube

 

 

 

 

 

 

 

 

All quite simple really but feeding tubes are tricky & tiring work for everyone. It’s not so much the actual feeding, although the logistics of feeds can be tricky, especially now she’s older. It’s all that comes with it. Tape changes are unpleasant at best, pinning your child down & holding their head while they scream is no fun. Tube change days are horrendous. If Isla pulls her tube out, it means a trip to the children’s ward to have it replaced. Stopping her pulling it out is a full time job in itself. We’ve had to put on gloves in recent 25 degree heat to stop her pulling it out on car journeys. Night times are also no fun, with her arms poppered inside a grobag & mitts turned over on her sleepsuits. We have to carry feeding supplies (one set per feed), tape, scissors & a spare tube everywhere with us.

 

We try not to let Isla’s tube stop us doing things. Days & trips out need to be more organised to make sure we have enough equipment & we stop for feeds but we feed anywhere & everywhere!

People ask questions which is great; the more awareness the better. Children tend to be very accepting of differences, much more so than adults. Once they know it doesn’t hurt & it helps her to have her milk, they don’t tend to ask much more but adults seem to find children’s questions uncomfortable and try to hurry them along. It amazes me that Isabelle has never questioned; she just accepts the changes that Isla has been through. We have always been very open & honest with her in order to try to prepare her for certain situations such as Isla’s surgeries but she’s very unphased and matter of fact about it all.

How long will Isla need her tube? We are hoping not too long, although it’s been over 3 months now. We are working with feeding specialists, speech & language, dietitians, the community nursing team and of course, Isla’s cleft team to try & improve her feeding but only Isla can really control it!

Incredible Isabelle!

My posts so far have been all about Isla but the other half of my incredible pair is her big sister Isabelle who has had a bit of a journey of her own!

Isabelle was literally forced into the world by csection on 25/2/14 at 11.28am after spending most of the pregnancy with her head wedged in my left rib & becoming stuck. There’s something very special about having your first baby & becoming a Mum. We enjoyed the first few hours as a three.

 

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First cuddles

 

Then it all began when the midwife thought she saw a cleft palate. The next few days were a blur of paediatricians, midwives & doctors. Isabelle didn’t have a cleft palate but she had some ‘unusual features’ that they wanted to keep an eye on. Isabelle was then readmitted to hospital at 4 days old having lost 16% of her body weight, essentially failing to thrive. Her small jaw and high bubble palate meant that milk transfer was difficult for her so we spent a few days in hospital before coming home and starting over again!

 

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Back in hospital

 

I remember spending many of the early weeks & months googling all the different things the doctors thought were ‘wrong’. There were many horrible appointments & I struggled through those months, mainly with the unknown. As she grew, I became less & less worried about her as she began to develop normally, albeit a bit lazy to crawl & walk.

There have been some worrying times over the past 3 years. Doctors have had concerns about her growth, her skeletal development, speech, sight, hearing & more. Most recently she had an immunological reaction which can cause long-term kidney damage, which she is being monitored for.

Despite all of this, Isabelle has done remarkably well. She is still under a variety of specialists including orthopaedics, ophthalmology, physio, audiology & genetics. In October, she got glasses & has taken to them brilliantly. She’s an extremely brave little girl, even watching cannulas being inserted into her hand with interest. Nothing phases her and we always try to make their hospital appointments as fun as possible for them both! Luckily, at the moment, she enjoys the play areas in the hospital so we can usually tempt her with those and the promise of a cake afterwards!


Isabelle & Isla share many features as they have the same genetic condition. Interestingly, Isabelle has a mild forme frustre lip (also known as a microform cleft). She is also under the cleft teams’ speech & language therapist to monitor her palate function. Maybe our early experiences with Isabelle are what caused Tim to spot Isla’s cleft on our 20 week scan. Isabelle absolutely dotes on her little sister and has been so kind and caring towards her since she was born.

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This week she has her first operation at John Radcliffe Hospital in Oxford. She was born with a rare type of birth mark on her head that needs removing. Due to its shape/size, type of skin & location, it has a chance of growing tumours or skin cancer. So she is having a ‘serial excision’ to remove it in 2 parts. In typical Isabelle style, her biggest worry is that the hospital won’t have egg sandwiches. I can feel the familiar pre surgery anxieties beginning for me but I know she’ll be a superstar.

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(Photo credit to Hannah Hall Photography)

THE guilt!

Mummy guilt. It strikes you when you least expect it. Ever since I became a mum, I’ve felt it. And no one warns you, probably because even if they did you wouldn’t believe it!

I always had the pangs of guilt when I had Isabelle but when I was pregnant with Isla, ‘the guilt’ was on another level. I felt guilty that we were going to take attention away from Isabelle when she’d been so used to our sole focus but ultimately I knew that having a sibling would be good for her. Then I had a very difficult start to my pregnancy with Isla; bad sickness and almost continual bleeds that meant we spent more time at the hospital than usual. I felt guilty that she watched too much TV, ate too many snacks and didn’t spend as much time outside as I would have liked.

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Our last holiday as a three!

And then we had our anomaly scan and the mummy guilt rocketed. What had I done to cause this? I remember scanning through the calendar, trying to work out what I had done at 6/7/8 weeks that could have caused Isla’s conditions. This was compounded by being regularly asked if I took enough folic acid/drank in early pregnancy/knew what caused Isla’s cleft.

At 29 weeks, I had a severe bleed & was hospitalised for almost a week. The unplanned separation from Isabelle made me feel awful & when they found it was an issue with the placenta, I was riddled with guilt that I’d yet again caused another problem for my baby.

When Isla was born the guilt multiplied again. I went into hospital for monitoring & left Isabelle with my amazing friend, to then be separated for the next few weeks whilst Isla was in hospital.  I felt incredibly guilty that Isla had difficulties that landed her in NICU. I felt guilty that she couldn’t feed & needed an NG tube. I felt guilty that she had hearing loss.

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The first time my girls met

I still feel guilty on a daily basis. Our normal isn’t the norm. My girls spend their weeks with hospital, GP & nurse visits. I feel incredibly guilty that we don’t get to fit more in because of all the appointments. I feel guilty that we can’t commit to baby or toddler classes because of the frequency of their hospital visits. This guilt is always compounded when I see what others are doing, especially on beautifully sunny days when we’ve been stuck inside a boiling hospital. It saddens me that this is their norm. They don’t know any different, which I’m thankful for & feel guilty for in equal measure. I feel guilty when I see children of the same age or younger doing things that my two can’t.

So how to combat the mummy guilt?! Be realistic. Know that you are doing everything you can within your own capabilities. When I’m having a bad day of it, I remind myself that I do the best I can in the time we have; that we spend a lot of time together at the weekends with Daddy, doing fun things. I remind myself that the reason we spend so much time at appointments is to ensure the girls get the care & treatment they need. I remind myself that they’re both happy. I also remind myself that I’m not to blame for every single thing that happens, sometimes things just do.

So whatever your mummy guilt, be kind to yourself. You are only one person, probably sleep deprived & constantly on the go, doing the best job you can. Give yourself a break today.

Cleft FAQ!

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In the beginning, it was difficult when people asked certain questions. I didn’t know the answers & there was so much unknown. Whilst there are still unknowns, it’s much easier to answer questions now that we’ve lived it for the past 10 months.

So here’s the most commonly asked questions about Isla’s cleft & more importantly, the answers!

What is a cleft lip/palate?
A cleft is where part of the baby’s face did not join together in very early pregnancy (6/7 weeks) and affects 1 in every 700 babies, which is around 1200 babies per year. Isla was born with a unilateral (one sided) complete cleft lip and palate with alveolar ridge. This means the cleft runs from her lip at the front of her mouth all the way through to the back of her palate, involving her gum as well. This graphic is really useful to see the different types, although there are also huge variations on this. Isla’s cleft was wide and her palate was very widely open, much more so than on this diagram.

 

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Image from Cleftopedia

What caused it?
In Isla’s case, we believe there is a genetic link. Around 85% of clefts are of unknown cause with the remaining 15% being linked to genetic conditions.  Isla is taking part in a research study (Cleft Collective) which is a long term project aiming to find out more about the causes and treatment pathways for cleft lip and palates.

It’s just cosmetic, isn’t it?
Absolutely not. Many people believe that after lip repair surgery, the baby is ‘fixed’ or  ‘better now’. However, for children born with a cleft lip and particularly where the palate is also involved, there are other considerations. It can also affect hearing, speech, jaw growth, teeth and most importantly, feeding.

 

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A very new Isla!

 

 

How does it impact on hearing?
Children born with a cleft palate are more likely to have structural differences in their Eustachian tube and the muscles may not function as well. This can impact on their hearing as sound can become impaired as it travels through the middle ear. There are various options for improving hearing including grommets and hearing aids.
Isla has had a hearing loss since birth (I wrote about that here) and will be monitored until she is at least 18 years old, regardless of how her hearing is in future.

 

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Isla with her bone conduction hearing aid

Why does she need speech therapy?
At 10 months old, Isla has already seen the cleft team’s specialist speech and language therapist three times. Even though her palate has been repaired, Isla still has no suction and needs to learn to use and train the muscles underneath. She can only make one sound at present, although is trying very hard to make others. We have activities that we carry out with her at home every day to encourage her to use her palate and make new sounds. Isla’s hearing can also impact on her speech and this is why we decided to try a hearing aid from an early age.
Cleftline has an extremely good and detailed explanation of how cleft palates can impact speech on their website for anyone wanting to know more.

Why can’t she breastfeed/have a normal bottle?
When babies suck, they use their palate. As Isla’s cleft was very wide, she was completely unable to form any suction. We did try but she was physically unable to. Alongside her NG tube, Isla has tried a few different specialist bottles. We started off with a MAM squezy bottle where we would fill the teat with milk and then squeeze the bottle by hand whilst Isla was feeding so that the milk would just flow into her mouth. However, she found this quite difficult to control and it also increased her reflux symptoms so we looked at more baby-led options. She has been using a Dr Brown’s Speciality Feeding bottle since she was about 2 months old. This oottle allows her to clamp down on the teat with her gums and control the milk flow herself as the special blue valve keeps the milk from going back into the bottle from the teat.

 

 

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Isla’s specialist bottles

Can she use normal bottles now her palate has been repaired?
At the moment, no. Isla still has no suction. She also finds feeding from her specialist bottles tricky at times. But recovery from her palate surgery has been difficult for her so we hope that as she grows and gains suction, she will eventually be able to use a normal sippy cup.

 

What’s the tube for?
Isla has had a nasogastric (NG) tube twice; once from birth until she could manage full bottle feeds and now after palate repair. Both times her tube has been used alongside her bottle feeds as the aim is that she will take all of her feeds orally. The tube is inserted into her nostril and passed down into her stomach (keeping it there is a whole other post!!) Her feeds are then given through the tube when she doesn’t take her feeds orally.

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Leave a comment or let me know if there are any other questions I can answer!

 

What I wish I’d known

Friday 4th March 2016. This date will forever be imprinted in my memory. It’s the day we had our 20 week scan. After a difficult first trimester where I had weekly scans until 14 weeks, we hadn’t seen the baby on screen for 6 weeks so I was excited and a little nervous to know that all was okay.

The sonographer got started and we joked about how the baby was breech as Isabelle had been too. As she scanned over baby’s face, I thought I saw a shadow. The sonographer didn’t say anything but hovered over the picture for a few moments. My husband was the one that asked “is that a cleft lip?” After a very long scan, we were sent up to fetal medicine to discuss the implications of what had been found.

The weeks that followed were fraught with scans, tests and appointments. We met various fetal medicine consultants, specialist midwives, geneticists, our cleft team, paediatricians and many more professionals.

According to CLAPA, around 85% of cleft lip and palates occur in isolation. It became clear through more scans and tests that Isla was in the 15% of cases where clefts are linked to a genetic condition. Every scan we had (and there were many), something else was discovered; micrognathia (small chin), midfacial hypoplasia, fluid in her stomach, legs which measured weeks behind the rest of her – the list felt endless. The only surprise we had left was her gender; how we managed to keep from seeing that I have no idea! We had to make the difficult decision of whether to have an amniocentesis which we eventually decided against.

My pregnancy was filled with anxiety and dread of the next scan, of what they would find wrong this time. Upset and irritation at ‘helpful’ comments. Worry of what would happen when she was born. But despite all that, I tried never to lose sight of the excitement of our much longed for, incredibly special baby.

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So true!

 

So here’s what I wish I’d known.

I wish I’d known that whatever is thrown at us, we’ll deal with together.

I wish I’d known that although the appointments, surgeries and hospital stays are relentless, it makes us appreciate our family time more than ever.

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Family time!

I wish I’d known that I’d learn to brush off negative medical outlooks, that I watch the girls do things in their own time and when they meet those little milestones, it feels huge.

I wish I’d known that the impact on Isabelle would be different than how I imagined. Of course she has found it difficult but the love & concern she has for her baby sister is amazing.


I wish I’d known that family and friends rally round and are there through it all. They never tire of listening or helping in any way possible.

I wish I’d known that the anxiety and worry of my pregnancy would develop into the strongest, most protective bond. That not being able to breastfeed wouldn’t impact us in the ways I thought & we would find other ways.


I wish I’d known that when she was born, I wouldn’t even notice her cleft. That all we’d see was how much she looked like her big sister.

I wish I’d known that after her surgery, it would take me weeks to adjust to her new smile and even now, I miss her wide cleft smile. It was the first smile we ever saw. But that we’d feel so lucky to get a first smile twice over.

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After palate repair

More than anything, what I really, really wish I’d known is that the baby on the screen would be one of the strongest, most resilient little people I’ve ever known. That whatever challenges come her way, she will face them with her sunny personality and beaming smile that would keep us all smiling.

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Putting on a ring sling with monitors and/or nasogastric tube – photo tutorial

The first time I carried Isla in a ring sling with monitors attached and a newly placed NG tube, I was very nervous! So I’ve put together this short photo tutorial to show a slightly alternative way of putting the ring sling on without having to disconnect monitors.

As always, safety is priority and further information can be found here and here.

  1. Ensure your ring sling is threaded and prepared for size. Position baby onto your front/hip as you would like to carry them.
  2. Whilst fully supporting baby with one arm, put the other arm through the ring sling, pass it over your head and rest the rings high on the opposite shoulder. Ensure that any wires/tubes have not become stuck and that baby’s airway is not obstructed at any time.

     

  3. Pull the ring sling ‘pouch’ down into a rope and sit baby on to the rope so that they are in a seated position with knees higher than bum. Pull the top edge (rail) of the fabric to the top of baby’s neck.
  4. Now make the seat. Ensure the top rail (edge) is up to the top of baby’s neck. Pull any excess fabric down so that the fabric is smooth over baby’s back. Bring slack in the bottom rail (edge) round from the side, pin the material into one knee pit, pull the fabric in a tight straight line under baby’s bottom and into the other knee pit, feeding excess slack up to the rings and tighten.
  5. Feed excess slack across the top of the ring sling to the rings and tighten. Continue to feed slack to the rings and tighten until all slack is passed through the rings. The ring sling should be secure with baby well supported, airway clear and all wires/tubes checked for any obstruction.

Carrying Isla – my early experiences of carrying a baby with a medical condition

Isla was born in July 2016 with a unilateral cleft lip, palate and alveolar ridge, Pierre Robin Sequence and an undiagnosed genetic condition. She spent her first two weeks in NICU; attached to high flow oxygen, IV drips, various monitors and being fed through a nasogastric (NG) tube. For the first few days, we were only allowed 15-30 minutes of skin to skin to enable Isla as much rest as possible. At 8 days old, Isla had improved so much that I was allowed to stay with her overnight and do as much of her care as I was able to.

We had spent much of that first week separated so that night, whilst I measured out feeds, washed and sterilised Isla’s feeding equipment and ate, I carried Isla in a sling to keep her close – something both of us were keen on after our initial separation. I had trained as a sling consultant at 34 weeks pregnant so although carrying a baby attached to monitors and a feeding tube was daunting, I followed the basic safety principles of clear airway with a close, high and tight carry (see here for more information on safety) in our beautiful Little Fellows ring sling.

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An 8 day old Isla in our Little Fellows ring sling for the first time. Second picture shows placement of wires.

As Isla had monitors on her feet and a tube in her nose (which I was anxious not to pull in any way), it took a few attempts to work out how best to deal with all the wires.
I found that:
* using a connecta worked in the ‘normal’ way of putting it on;
* woven wraps were best used in a single layer carry such as kangaroo so that I could position Isla and her wires first;
* similarly, ring slings were best put over the top of Isla already laying on my chest so we did not have wires travelling up and pressing on her spine (see here for photo tutorial)
(This is what worked for us to avoid having to disconnect wires and monitors – always seek medical advice/sling consultant advice if you are unsure of any aspect)

Isla came home with the NG tube in place. We navigated the first few weeks of becoming a family of 4 alongside tube feeding, endless appointments, specialist bottles, horrendous reflux, expressing night and day together. By week 5, Isla was feeding so well that the tube was removed (well, I think she pulled it but we won’t mention that!)

Anyone who has had a baby stay in NICU will tell you how helpless you feel and I was worried that after a difficult pregnancy, this would have an effect on our bond. Being able to keep Isla close whilst still meeting the needs of a toddler and carrying on with daily life enabled me to feel like a competent parent, which had a hugely positive impact on all of us. In short, I’m pretty sure slings saved me in the early days of being a parent of 2!

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Isla at a few weeks old being carried in our beautiful Bebe Sachi Warna woven wrap