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.

8CD883E9-A587-47F8-BF3C-7F8886FAB6C7

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!

IMG_4266

 

image1.JPG

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.

 

E8418A35-B753-41C5-A162-EF2AD04877A9.JPG

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!

 

IMG_4156

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.

HHP_Family_Young-1.jpg

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.

FullSizeRender                    FullSizeRender_1

(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.

B9170978-29A5-4D58-9C17-42E3DE956CFE

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.

47A89955-2F29-4C7A-A530-DC4FD9C0C742

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!

FullSizeRender.jpg

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.

 

18402672_1847766655484953_5523236845940045328_n

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.

 

1BFDEE04-D58A-4073-8093-79E1F6DA416D

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.

 

IMG_1205

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.

 

 

18485553_10154334832862721_738832650922054168_n

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.

8CD883E9-A587-47F8-BF3C-7F8886FAB6C7

 

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.

IMG_2836

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.

IMG_3735

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 would feel huge.

I wish I’d known that the impact on Isabellr would be different that 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.

IMG_3239

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.

IMG_3739

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.

d6793c59-b494-41e1-908e-de0e5986eb8f.jpg     5018082f-57c9-4abd-aee9-31cec47db498.jpg
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!

1F404AE8-27BE-4209-9886-C787E336B94C
Isla at a few weeks old being carried in our beautiful Bebe Sachi Warna woven wrap

It’s just a cleft….

I’ve been undecided about writing this post for some time as Isla’s journey through palate repair has been different from other babies with a cleft. Isla was also born with Pierre Robin Sequence and a genetic condition. She has a flat facial profile and small jaw. So if you are reading this pre-op or as an expectant baby with a cleft lip/palate, please don’t think this is always how it goes. Isla has additional complications which have meant that closing her palate was always going to be tricky. So here goes…

Isla’s palate repair was scheduled for 8th March 2017 (you can read a little more about the run up to surgery here). We had a long wait but she finally went down to surgery at lunchtime. I was slightly less anxious this time; after all, we’d done it before! But no one tells you that whether it’s the first or the tenth time of leaving your child in that operating theatre, it never gets any easier. Isla was particularly wriggly and we had to leave her whimpering which was the hardest thing I’ve ever had to do.

Both of Isla’s ops have been lengthy, taking around 5-6 hours. Trying to distract yourself is an impossible task – I must have paced the corridors for hours. Walking helped but the sick feeling in my stomach stayed; a feeling all too familiar from her early days and previous surgeries. When the pager went off to say she was out of theatre, we ran up to recovery. We were pleasantly surprised to see her awake, albeit groggy, and sitting on the nurse’s knee. After lip repair, Isla had needed additional oxygen so it was a relief to see she wasn’t on any this time. She snuggled into me and feel back to sleep.

As expected, the first few days were rough for her. Previously a milk monster, she refused her bottle and although this was not surprising initially, this continued. After she had been off IV fluids for 24 hours, she was still not drinking any reasonable quantities and certainly not enough to keep her hydrated so it was decided to use the nasogastric (NG) tube that had been put in place for medication to feed her. We were visited by our lovely cleft nurse on the ward and she had lots of helpful suggestions but Isla was having none of it. As Saturday evening approached, it became apparent there were no beds on any children’s wards in Addenbrookes and the ward we were on closed for the weekend. After much reluctance and discussions with ward staff and Isla’s surgeon, it was decided that as we were trained to use the NG tube and had done so previously, Isla would have to be discharged with the tube in place for feeds.

 

IMG_3571

Back home with her favourite!

 

 

The coming weeks were hard. Isla was desperately trying but it was obvious that she was struggling with the huge changes to her mouth and airway. She began to have choking episodes, particularly at night,  and pauses in her breathing during sleep. We tried absolutely everything to get her to feed and both of us became increasingly frustrated at the situation.

Our cleft nurse was trying to get Isla admitted to Addenbrookes for assessment but there was a huge issue with beds. In the meantime, we were couriered the equipment to do an overnight sleep study at home for 2 nights to see what was happening to her oxygen levels at night time. Finally we had a phone call on 5th April to say that Isla had a bed! She had an additional overnight sleep study with chest and stomach bands to monitor movement, SATs monitor on her foot and a camera videoing her.

We met the respiratory team who assessed and gave us some useful advice. The cleft nurse also came to see us with more suggestions. By far the most useful part of our stay was seeing the dysphasia Speech and Language specialist. Her advice was extremely useful. She felt that Isla had developed an aversion to feeding and alongside the physical changes, she was struggling with not being able to control her feeding.

When we got home, we completely changed tact, following the specialist’s advice. Everything was completely controlled by Isla. She was offered her bottle twice a day and at every mealtime, she was given the same food as us on her highchair tray (a challenge when she was still on a soft food diet!)

IMG_3568

Slowly but surely, her feeds have started to improve and her solids intake is increasing. We had a big glimmer of hope when she had only needed minimal tube top ups for a few day and then pulled her tube out whilst I momentarily had my back turned. We decided to see how she got on without it but her feeding reverted and unfortunately, we had to take her to the hospital to replace the tube.

 

IMG_3800

Not too happy with her new tube!

 

So no, it’s not “just a cleft”. It’s not just two surgeries. Isla has had far from a straightforward time. She’s under multiple specialists including genetics, audiology, paediatrics, dietetics, community nurses, ophthalmology, speech and language therapists, Teacher of the Deaf and is showing some developmental delays (which is unsurprising considering everything she’s been through). We have 2-3 appointments per week. There will be more surgeries; probably multiple but at the very least, 2 more. Her palate is very short so she still has food and milk coming down her nose and can only make very limited speech sounds. She will probably need extensive dental work – her first tooth was removed from her nose during her lip closure surgery.  The sleep study showed obstructions in her sleep where her oxygen levels frequently dip, so she will need further investigation. Her hearing will be monitored and supported by aids, and she already sees a speech therapist.

 

IMG_3892

From the Cleftopedia page

 

For Isla, it’s not just a cleft. It’s not “easily fixed”. It’s not “just cosmetic”.  (Yes, we have had all of those things said to us + more…..)
Isla is in the 15% of babies who have additional conditions and will need lifelong follow-up. The cleft care pathway is at least 19 years. We don’t yet know the full implications of her genetic condition. But we will cross that bridge when we come to it. For now, we focus on getting the best care for Isla and making sure she has every opportunity to thrive. She certainly has the determination!

Surgery and slings!

We’ve known that Isla will need multiple operations since our 20 week scan. At the beginning of October, we received Isla’s first surgery date for lip closure – 23rd November 2016.

FullSizeRender.jpg

20 week scan!

The run up to the date of the operation was a fraught time. I was worried about how she would cope in the lead up to and after surgery, being separated from my toddler and how we would feel when we saw her new smile for the first time. The cosmetics of Isla’s cleft had never bothered us, it was always about the impact it had and continues to have on her, but we loved that face from the moment we first saw her and it was about to change. Most of all, I was worried about how I would hand my daughter over to a relative stranger and walk away.

On the day of surgery, we arrived on the surgical ward at 7am. Isla had been fasted since 3am and I had packed my trusty Je Porte Mon Bebe ring sling in anticipation of a difficult wait. We had a very long 5 hour delay and by the time of surgery, Isla had been fasted for 10 hours. She coped remarkably well and even fell asleep in the sling for part of the wait. I would have struggled without as I ended up pacing the ward with her in the sling for many hours.

FullSizeRender_1

Snoozing in the ring sling before surgery

We spent 3 nights in hospital after her operation and having the sling on hand meant I was able to eat, wash and sterilise her bottles and still keep her calm. We had to adapt some ways of putting the ring sling on as she was attached to monitors but we had used similar methods when she was in NICU so it was not as daunting. As expected, she only wanted to sleep on us and once we got home, it was important that we were able to keep some normality for our toddler who had struggled with the separation.

Isla developed a nice little quirk of rubbing her newly stitched lip on my top when she was in a tummy to tummy carry. I felt anxious that she would rip her stitches or in the very least hurt herself so I sent my fellow sling library consultant a message and she reminded me of some other carries that might be useful (see – even consultants need professional help!) For a few days, I carried Isla in a seated sideways position in our ring sling (video tutorial here – credit to my lovely friend & fellow sling consultant Emma Palmer!) to make sure that she wouldn’t cause any problems with her stitches and the novelty soon wore off!

IMG_1434.JPG

Post-surgery ring sling cuddles

Palate repair surgery soon came around. As before, we took both our Connecta and JPMBB ring sling. Also as before, we had a very long delay and took turns to pace the ward. Isla was older and more aware this time so it was more difficult to amuse her but she did exceptionally well yet again, better than us! Daddy carried her down to theatre in his favourite connecta and once again, we had the difficult task of leaving her in the hands of her very skilled surgeon.

IMG_3226               IMG_3228

Since her palate repair, Isla has unfortunately had feeding difficulties and came home with a nasogastric (NG) tube in place. We have had to quickly learn the different challenges of an older baby being tube fed. She has pulled it out numerous times which makes doing any tasks very difficult as you can’t take your eyes off her for a second. In the sling, I can monitor what little hands are doing whilst still being able to play with toddler/prepare her feeding equipment/walk the dog. She has also understandably been very unsettled and being close to one of us has helped us all to retain some normality.

IMG_3324

How jobs get done!

 

IMG_3335

Cuddles with Daddy

 

 

 

 

 

 

 

 

 

 

Isla has many hospital appointments and is sometimes wary of nursing staff. Carrying her has provided reassurance and convenience to me of being able to navigate hospital corridors and stairs! Carrying has provided us with many benefits and has certainly reduced stress levels all round.

image1-5.jpg

On the way to one of our many appointments!

 

Isla’s headgear!

When Isla was in the nursery room in SCBU, she finally got to have her newborn hearing screen. I say finally, it had only been a week, yet it was something I had worried about for a long time. Babies with a cleft are prone to glue ear and hearing loss which is something we had been warned about during my pregnancy so I was keen to know if Isla was affected. She hadn’t responded to many noises during her time in NICU but we were unsure if that was just because she was focussing on getting stronger.

Isla failed both parts of the newborn hearing screen. The screeners explained to us that this was not a definitive test and as she had been born by C-section, she could still have fluid in her ears. We would be sent an outpatients appointment to attend the children’s hearing clinic (along with what felt like hundreds of other appointments!) and they would undertake further testing.

When we got home, I began to notice that Isla did not respond to many noises and that she wasn’t settled by my voice unless she was on my chest. Carrying her in the sling settled her as she could feel the vibrations from me talking and it also meant that I could carry on with day to day tasks as well as playing with my toddler.

2507C863-F5DE-4B4A-AC71-AEBA20117DB6

One of our very first trips out to the park with friends

We had various appointments at the Children’s Hearing Clinic over the coming months where it was found that Isla had a bilateral conductive hearing loss. After much testing and consultation, we were given two options; wait and see, possibly considering grommets at palate repair, or a bone conduction hearing aid. For us, this was not a choice. We already knew that Isla may have problems with speech because of her cleft palate so adding in a hearing loss at a critical stage for speech development in infancy felt too much of a risk. By using a hearing aid, we would give Isla the best chances in her speech sound development.

Isla had her hearing aid fitted on 11th November 2016. I videoed her initial reaction and it must have been amazing to her as her reaction was priceless! It took some adjustment for all of us; Isla had a whole new world of sound to discover and we had to work out what she could hear and the signals of it becoming overwhelming for her. When she becomes overwhelmed with sound, she rubs her head which displaces the band causing a feedback noise so we now take it off for car journeys and sleep.

IMG_1205

Isla with her brand new hearing aid

I have found carrying Isla in the sling has needed some adjustments. I keep a careful eye on the placement of the hearing aid to prevent loud and painful feedback noises. I also check that the volume control has not been knocked when putting her into the sling. I think that keeping her close with her hearing aid on in public has prevented her from becoming overwhelmed as she can snuggle in. It also means that I can keep a close eye on her and the band. When I do back carry, I use a mirror or my phone camera to check that everything is as it should be. If it’s not, she soon lets me know! I have also recently purchased a fiddle necklace to wear which stops her playing with both her hearing aid & feeding tube!

IMG_1995.JPG        IMG_1358          IMG_3230

Isla will be followed up by the Children’s Hearing Clinic until at least 19 years of age, whatever her hearing is like, because of the care pathway for children with a cleft lip and palate. We hope that her hearing will improve as she grows but for now, she’s rocking the headgear!

(Special thanks to my lovely best friend’s mum who has made extra, pretty bands for her aid!)