Tuesday 20 August 2013

Milo's Feeding Journey

Milo’s feeding journey

I knew that feeding Milo wouldn’t be a piece of cake. So me being me researched as much as I could about feeding difficulties and babies with Down syndrome.  My stubbornness meant that I knew that I had to feed breast feed Milo and that I would do everything that I possibly could to try and make that happen.  I researched on the internet and arranged a discussion with my friend and colleague who was an experienced lactation consultant (Angela).   Breast feeding any child brings with it immeasurable health benefits including helping with immunity, reducing the risk of diabetes and obesity in the future and reducing the risk of sudden infant death syndrome.  Yet I knew that the benefits for Milo would be far greater because of the fact that his immunity would be compromised due to his Down syndrome and complex heart defect (complete AVSD and PDA).  A natural, free and readily available source of the perfect type of antibodies was a real selling point for me.   Oral development was another very important issue to me as I knew that breastfeeding would help Milo to gain good tongue, lip and face control which in turn would help with his speech and communication skills. As well as being a midwife I was an experienced breast feeder having fed Milo’s older sister and successfully achieved the world Health Organisations recommendation of breastfeeding your child until they are at least 2.  In fact we’d managed to have a wonderful breastfeeding relationship until she was ready to move on at 3 years and 3 months old.  So I was confident that whatever challenges Milo would throw at me we would overcome them together.  Little did I know just how difficult this challenge would be.  During my research I found that there were several issues that could make breast feeding (or bottle feeding) more difficult than for a typical child.  

These include:
 Poor muscle tone - can cause reduced muscle strength in the lips, tongue and face making the latch poor and the suck weak and sometimes difficult to achieve.
Sleepiness - Babies with Down syndrome are often very sleepy during the first few weeks following birth which can hinder their feeding routine and ultimately your milk supply.
Tongue thrust – babies with Down syndrome tend to have a smaller jaw which can make their tongue appear to protrude and push against your nipple or your baby can struggle to latch on because of it.

As well as information from the down syndrome association I found these information sheets particularly useful when researching breastfeeding issues.

http://www.cdss.ca/images/pdf/brochures/english/CDSS_breastfeeding_brochure.pdf - I had this PDF printedoff in leaflet form and I went back to re read it time and time again as different issues cropped up.  It's beautifully written.
http://kellymom.com/health/baby-health/down-syndrome/ - massive list of invaluable resources.

My plan for feeding Milo was that I was to breast feed him often, so every 2-3 hours and that if he didn’t rouse to feed then I would express milk and give him this via a cup feed instead.   I would try to avoid bottles until I felt like we had mastered the art of breastfeeding.  So as Milo was born calmly after an induction at 37 weeks.  He latched on whilst being held skin to skin after 58 minutes and fed beautifully for nearly 50 minutes, magic and easy I thought! 
My beautiful baby in skin to skin

His first feed

I just love those hands! Looking a bit floppy though there so his latch is slipping.
The next few days Milo quietly gave one little noise to ask for feeds every 2-3 hours (and more during the night) but would rarely feed for longer than 5-10 minutes at a time before becoming too sleepy to feed any more.  The staff  were happy that this was ok as he’d passed a bit of meconium and was passing urine too .He was beginning to look jaundiced but a quick check before leaving the hospital on day 3 showed that his bilirubin level was still within the normal limit.  Once home I was an emotional wreck as my hormones were all over the place, I was exhausted and I felt the pressure from the responsibility of caring for a very vulnerable baby.  My midwife whom I knew and had worked with in the past reassured me that Milo was ok, that he hadn’t lost too much weight and that his feeding was normal for a baby born at 37 weeks.  By the following day however Milo had stopped asking for feeds and stopped latching on, his jaundice also looked worst.  I expressed milk and cup fed him and managed to get a referral to take him in to be reviewed for his jaundice. 
Cup feeding a sleepy baby Milo  EBM

He had the blood test (which took 4 attempts as his blood was so thick it would clot straight away) and we went home to wait for the results in the morning.  The phone rang at 7am asking us to bring Milo in straight away for treatment.
Milo spent 2 days receiving treatment under UV lights before we managed to escape home with him and his much bruised heels, poor baby.
Both of his heels were this bruised

The next week we struggled on setting alarms and rousing Milo to feed him every 3 hours.  Although he just about ticked the boxes for effective feeding (each feed lasting at least 5 minutes, latches on well, nipples not sore, at least 2 dirty nappies and 6 wet nappies) I was never convinced as his nappies were barely wet or dirty. 
Home and still jaundiced, but very cute!

I remember worrying a lot that he may have Hirshprungs disorder (a common bowel problem in babies with Down syndrome) as he was still passing bits of meconium rather than the typical yellow new born poo.  In fact in retrospect it is clear to me now that he simply wasn’t getting enough milk despite what the tick boxes said.   I became obsessed with documenting every feed, nappy change and vomit as I just felt as though things weren’t quite right and it was such a responsibility.  Then at 8 days old he just stopped trying to breastfeed.  I was distraught and didn’t know what to do.  I rang Angela who advised me to cup feed him 53mls of expressed breast milk over the weekend and have lots of skin to skin contact and she’d see me on the Monday to review his feeding and weigh him.

Snuggling Milo in skin to skin to help to regulate his temperature , encourage my milk supply  and his interest in feeding.

His feeding didn’t improve over the weekend and although it was hard work it felt satisfying to see him swallowing the milk although I only managed to average getting 40mls into him at each feed before he would become too sleepy again.  (In retrospect I think that this was the start of Milo becoming very symptomatic of heart failure but for some reason I didn’t put the 2 together and instead thought that it was something that I wasn’t doing right with trying to breast feed him!)  By the Monday I somehow managed to pull my exhausted hormonal self together to take Milo to the feeding clinic.   I was more than relieved to see that he had started to gain weight well, he then had his first nice yellow poo whilst I was there and also showed some attempts to latch on again but didn’t quite make it.  We came up with another plan and I felt so much better about it.  Angela gave me a supplemental nursing system (SNS) to help to get Milo to suck again. 
image taken from Amazon.com
She explained that it could be used in 2 ways, either by taping the fine milk tube to your breast to increase milk flow to the baby whilst sucking at the breast or by taping it to a clean finger and allowing the baby to suck  the milk from your finger.  Apparently the jaw action used whilst ‘finger feeding’ is very similar to that of breast feeding and babies were much more likely to go back to breast feeding following finger feeding than they were from drinking from a bottle.  As Milo still wasn’t able to latch on, finger feeding was the new way that I would attempt to feed Milo. 

Angela also organised for us to have some donor milk from the milk bank for Milo to help to support my supply whilst I was trying to boost it by frequent pumping and galactogogues such as porridge and fenugreek.  The donor milk had all come from mothers who had been screened for infectious diseases and it was prioritised for vulnerable or poorly babies it meant that the pressure was taken off of me to express a sufficient amount for each feed and was a big relief.  I was so so utterly greatful for her help, positivity and support.  She was also concerned that no follow up had been arranged to review Milo’s heart condition (we were told that a letter would be in the post for an appointment at 3-4 weeks old) so she organised follow up for him the following week at our local outpatients. 

So off we went home where we tried to adapt to our new routine of 3 hourly expressing, finger feeding, washing and sterilising, with a little time in between for the odd bit of sleep!  I felt guilty at the lack of attention my daughter was getting as Milo’s feeding regime demanded so much time.  Her behaviour started to suffer as she craved any form of attention from me, typical behaviour when a new baby arrives but it felt more intense because of Milo’s additional needs.  During this time I did manage to get Milo to latch back on to the breast occasionally, although it wasn’t easy.  I also had a go at trying to use the supplemental feeding system whilst he was on the breast but he was on unable to latch on with it taped to by breast and I felt like I needed to be an octopus to give Milo enough support, and manhandle my breast and the SNS.  Angela said that  we could try to thread it into the corner of his mouth once he was latched on and we did have some success with this method although the latch didn’t last for very long and I struggled to recreate it by myself.  The problem with Milo’s latch was that he needed a lot of support due to his floppiness.  So pillows were a necessity,  I also found that I couldn’t slouch back and attempt a ‘biological nurturing’ style breast feeding position as it wasn’t obvious to Milo in this position that I wanted him to feed.  Instead I had to sit upright with a nice straight back, holding Milo round the back of his head and under his jaw, making sure that I was lifting his jaw up as it was all too easy for his chin to sit on his chest preventing a wide adequate latch.  I also had to make sure that his spine was nicely in align to ensure that sucking and swallowing was comfortable for him (you try swallowing with your head looking at your left shoulder, it’s not easy!) Other techniques that I adopted were breast compressions when he started to slow down and get sleepy with feeding to try and gently encourage milk flow and him to continue gulping.  I also found that due to his tongue thrust and weak latch I would have to continue to hold my breast whilst he fed, with my thumb placed relatively close to his mouth to prevent the breast from slipping back out.    I used to envy other mums so much for their relaxed comfortable positions whilst feeding.  This felt military!  Most attempts would also end in me having to express and finger feed him what I could manage to get in him using the SNS to top him up.  It was exhausting, but I felt proud that I couldn’t possibly be doing anymore myself to help my baby to feed. 

By 2 and a half week’s old Milo was finally seen in outpatients where it was obvious to the Drs that he was in heart failure.  An x ray confirmed that his lungs were wet whilst blood tests showed that despite my desperate attempts to feed him,  cumulatively, he had not been getting adequate fluid and was struggling to resolve his jaundice issues.  An NG tube was passed. 

Although my baby screamed with pain and it was now obvious to everyone that he was quite poorly I was desperately relieved.  Relieved to have the burden of responsibility lifted and shared.  Relieved that my baby was now being closely watched and helped by the medical teams.  Milo was commenced on diuretics in an attempt to remove some of the fluid that had been collecting in his lungs   A Dr commented that we would probably be able to remove Milo’s NG tube within a day or 2 but I told him that I knew that there was no way that Milo would cope without it, he simply didn’t have enough energy to sustain himself.  After a few days Milo lost weight, due to the diuretics drying him out we thought.  So the dietician was involved and increased the amount of milk he could have.  Milo was allowed home for the weekend with his new NG tube and new routine.  I quickly discovered that although the NG tube made life easier getting the milk in to him, it wasn’t much easier over all.  I still tried to get Milo to latch on whilst I was tube feeding him as I wanted him to associate getting a full tummy with breast feeding.  At first he would just gag, so I encouraged him just to lie close in skin contact but then he did decide to latch on. I have to mention that I am aware that I was greatfully endowed with breasts and nipples that are not at all flat, which make breast feeding a bit more obvious for babies to feed although it does not take away any of the other difficulties nor does it translate to amazing milk supply.

 I also tried to see if he would take a bottle as I desperately wondered if his issues would improve if he would take a bottle.  Yet he would violently gag every time the teat was near his mouth as though I was trying to pass another NG tube.   It still hadn’t sunk in fully with me that his poor feeding issues were related to his heart failure and it wasn’t due to my determination to breastfeed, although this guilt has only just left me! In the end I discovered that by continuing to try him with a bottle it was having a negative impact on his acceptance to try to breastfeed, and ultimately long term this was more important so I gave up trying with a bottle for the time being.  I had accepted that he would need his NG tube until his heart was repaired and the quickest way for this to happen was to get him to reach his target weight of 5kg fast! We returned to the hospital on the Monday expecting a quick weigh in and a good bye to discover that Milo had lost even more weight.  That day he also started to sweat a lot (a classic sign of heart failure).

  His heart failure was getting worse and he needed more energy to breathe (as this was very hard work for him) and to put on weight, yet he needed less fluid as his lungs were still very ‘wet’.  It was decided that fortifying my expressed breast milk (EBM) would be a good option to add more calories to a smaller volume of milk.  We decided on using a new born formula as it was higher in calories and we went for one that was fortified with prebiotics as I’d heard that there was some good (non biased) research to support the use of prebiotics in infant formula.  I was anxious about the use of formula, even though I knew he needed it as there was a strong history of allergies including cow’s milk intolerance in both sides of the family.  I decided to view the formula as his medicine though and this approach really helped me to get over any qualms that I once might have had about the use of formula.  In fact this is one of those true situations where the use of formula fulfilled its intended purpose of saving a child’s life and I am very greatful for it.  3 days later however Milo was still losing weight and the hospital staff were now becoming very anxious. 

  I also developed thrush from breastfeeding and expressing became really painful, particularly following,  when my nipples would burn and breastfeeding felt like someone was rubbing sandpaper both on and in my breasts/nipples!  Unable to visit my GP as Milo needed me with him to keep providing him with milk I had to wait for a telephone consultation then for a relative to fetch my prescription.  Thrush whilst breastfeeding is more common in times of stress so it is no wonder that I developed it.  Both myself and Milo were treated for it to be on the safe side.

We doubled the amount of formula powder that we added to my EBM to 1 scoop per 50mls of formula whilst the staff tried to arrange an outpatient’s appointment in Birmingham for Milo to be reviewed.  It was a very strange time being in the hospital with my new born baby, missing my family and still trying to understand what was going on and who this baby was?  I knew he’d have Down syndrome antenatally but at this time I remember feeling like he still seemed so unfamiliar although I desperately loved him.   Milo continued to lose weight and started to profusely vomit after his feeds so he was commenced on anti-reflux medication.  The staff felt that even though a test had come back to show that there were the same number of calories in my fortified breast milk as a very high energy milk called Similac, they thought it was best to give this new milk a go overnight as a last ditch attempt to get him to start to gain some weight.  By this point although I felt uneasy about the Similac I was desperately worried about my baby who was classed as failure to thrive, his skin hung from him and he was covered in an angry rash.  I felt as though he was falling apart and I didn’t know how to help him.  The Similac was started through an overnight pump system as they wanted to give him the best chance of absorbing it (and it also meant I may get a bit of a break as I wouldn’t have to tube feed him overnight although I would still be getting up to express 3 hourly).  I remember feeling very strange about the Similac as though it was a chemotherapy drug being pumped into my babies’ body.  I was anxious and twitchy and felt that the thick sticky milk was too rich for my precious new baby. By midnight he was vomiting and needed a 2 hour break from the milk, but he managed ok with it for the rest of the night.  After another night on it was clear that he was coping ok with it and so I began to feel more comfortable with using it. 

Finally after 3 weeks of being in hospital we managed to achieve a high enough level of calories combined with the right amount of diuretics and so we were able to go home for a few weeks with our new intense regime. 

Milo continued to have quite severe reflux to the point where we had to carry a cup around with us to catch his vomit in after most feeds.  He would choke and gagg with the vomiting though  and it just looked so uncomfortable for him and would last a couple of minutes after each feed.  He still somehow managed to gain weight although every week as the dietician would advise me to increase the number of mls to give him with each feed I dreaded it as I knew the chance of me getting him to keep it down would decrease further.  

Then as his sister developed a bad cold I knew that there was no way that I could protect Milo from it and I was right. He was readmitted with bronchiolitis and remained in hospital for over a month, coming home on December the 22nd.  During his illness he was so poorly that he didn’t practice breastfeeding at all for 2 weeks and was only allowed home on a continuous drip feed of milk through a pump as his breathing had been badly affected from his pneumonia, he was also oxygen dependant.  I was advised if possible to avoid any extra fluid of breastfeeding and simply only allow him a bit of practice sucking if possible.  This was so difficult to achieve and quantify as I never knew how much milk he took.  However because he was pump fed I felt that the goal of him associating a full tummy with sucking was lost anyway and I didn’t know if Milo would ever be able to breastfeed successfully following heart surgery. I had tried Milo with dummy's off and on since he was a month old but he only ever gagged on it as soon as it came near his mouth.

 Things got worse when Milo went on to develop influenza B and needed treatment and care in the intensive care unit , once again I continued to express 3 hourly as apart from being by his side it was the only constructive thing that I could do to help him.  After a few weeks recovering he was still struggling. I allowed him to have very short comfort feeds (1-2 minutes) and he would become exhausted and sweat profusely.  It was so difficult, the Dr’s said to me ‘we hate to tell anyone that they can’t breast feed, but he’s just not well’.  Milo wanted to breastfeed but it was just too difficult for him.  I held Milo close to me and allowed him the comfort of my skin as he recovered enough to be transferred to Alder Hey for his cardiac surgery (where we'd transferred his cardiac care to). During his illness he had taken to sucking water off of mouth care sponge sticks. It was lovely to see, as it meant that for once he was able to have some pleasant oral stimulation although I remember him pestering the nurses for more and more of them when he was supposed to be on restricted fluids!

 Much to my sadness it had been discussed and agreed by my friend Angela the lactation specialist, the cardiac liaison nurses and Milo's cardiologist that it was unlikely that Milo would be able to sustain himself following surgery by breastfeeding alone.  He had been fed through a pump for too long and no longer recognised signs of hunger.  It was felt that it would be in his best interest to perform a gastrostomy on him and insert a ‘peg’ directly into his stomach to avoid any invasive NG tubes which would help Milo to regain pleasant oral sensations again which would help him when it came to breast feeding, oral fluids and weaning.  We could then use the peg to top him up with additional fluids and calories.   It seemed like a sensible idea given that they would be able to perform the procedure whilst he was already sedated and intubated following his surgery in ICU.  It also meant that Milo would be able to enjoy breast feeding without the pressure on us that he must gain weight well.  We signed the consent form for the gastrostomy and expected that this would be the path we’d follow once his cardiac surgery was complete.

Milo was 4 and a half months old when he had his surgery but it did not go as planned and he developed several complications whilst in intensive care over the coming weeks.  There were 2 in particular that impacted his feeding journey.  The first complication was that he developed what they suspected to be Necrotizing Enterocolitis (NEC) which is a nasty gut and bowel infection.  His abdomen swelled massively whilst the blood supply to the area obviously diminished. 
Very poorly baby after 2 weeks in PICU

All oral feeds were stopped and he was put on Trans Parental Nutrition (TPN; nutrition through his veins) in order to rest his gut for a few days. I strongly feel that at this time his EBM was the magic medicine which helped his gut to heal and begin to function normally again without the need for surgery.  It was reintroduced very slowly at a rate of just 1 ml per hour, then 5 mls per hour for days before we increased it amazingly he avoided needing surgery on his gut to repair any damage.  The consultants all felt at this time though that because of this major abdominal set back that to perform a gastrostomy on him now would be too risky and possibly even invite further infections into an already very vulnerable and unstable baby. 

The process of expressing Milo’s milk during this incredibly stressful time was once again, both rewarding, to know that I was able to help him but also emotional as I wasn’t able to feed him (nor hold him!) myself.  Once again my milk dried up completely with the shock of Milo’s desperate situation.  I’d been in this situation before though with my milk and knew that although I was only able to express a few mls that I could get my supply back through using some simple steps.  I’d watch videos of Milo breastfeeding on my phone.  I tried to relax as much as possible using a warm compress on my breast to help with the milk ejection reflex.  Finally my Gp had been very sympathetic and had prescribed me domperidone supplements which I could take 3 times a day. The domperidone always had a noticeable impact on my improved supply and it was a relief to have a backup plan otherwise I might of thought that that was that.   I was never a particularly good expresser anyway, averaging about 60mls per session and never more than 100mls so it was a constant battle to keep my supply up during such a stressful time. 

The other complication that impacted Milo’s feeding was the diagnosis of chylothorax.  The space between his lungs and ribs had been filling with a substance called chyle which was making his breathing increasingly difficult.  There isn’t  much research on chylothorax but a couple of theories exist that it is either a stress response or it is caused by a surgical nick or cut to the lymphatic drainage system during surgery.  Traditionally the treatment has involved removing all fats from a child’s diet to allow the lymphatic drainage system to heal without circulating and ultimately losing fat through the damaged area.  I knew that this would mean that they would ask me to stop breastfeeding so that they could put Milo on a fat free milk called Monogen.  I was devastated after everything I’d one to get to this stage with Milo’s feeding journey.  I was also devastated as Milo was unable to take a bottle due to his heightened gag reflex from tube feeding and without breastfeeding it would mean that we would have to return to NG feeding.  More than anything I just wanted to be able to hold and breast feed my baby. 

I was so relieved to hear that they were going to give Milo a week to see if his chylothorax would heal itself whilst remaining on breast milk.  Luckily for me the consultant in charge of his care that week had done some preliminary research to show that for the vast majority of patients, their chlylothorax would self-resolve within 1 week of diagnosis and chest drain being in.  This was a complete challenge to the existing norm of treatment!  
Although chylothorax patients are expected to drain for longer compared to patients without chylothorax, there were no significant differences in duration of drainage or length of stay between the ‘positive’, ‘borderline’ or ‘negative’ groups. A positive diagnosis, therefore, may provide little assistance when considering the likely clinical course of an individual patient. Interventions appear to have no significant effect on duration of drainage or length of stay. In fact TPN and octreotide appear to be associated with longer DOD and LOS; however, it seems most likely that TPN and octreotide are given because the patient is continuing to drain rather than vice versa. The literature regarding treatment options is based on small case series and retrospective audits. No randomised controlled trials have been published. Since interventions for chylothorax have adverse nutritional effects, may be associated with secondary complications (e.g. line infection, biliary stasis) and in some cases are completely anecdotal, we feel a randomised trial of active vs expectant management is indicated. Following a review of this data, our department has instituted a policy of expectant management for seven days after diagnosis. Of eight patients who received a positive diagnosis of chylothorax, five resolved without treatment. One patient was intended to be managed with a low fat diet, but did not eat and was recommenced on normal diet; drainage subsequently resolved. Another initially received Monogen but was found to be lactose intolerant and so recommenced his normal milk; drainage stopped without further treatment. 
( R.Johnson 2010)
I've put the above bit of data information in as I desperately tried searching for such information when I needed it most but couldn't find it anywhere.  A friend has since passed it on to me so I hope that it might be of interest to someone, someday,  in that same desperate situation as I was. Please let me know if you've found it useful.

However after an anxious week Milo’s hadn’t resolved although his drainage had dramatically reduced.  I was devastated when they said that they now wanted me to stop giving him any breast milk.  So we tried Milo on the Monogen milk but he did not tolerate it.  I think that as his digestive system was still recovering from NEC it was just too difficult and strange for him to digest.  He vomited continuously, had diarrhoea and became dehydrated and tachycardic.  Thankfully and to my relief they said that he could go back onto breast milk.  His chylothorax took another 10 days to reduce the amount that was leaking but finally when it was draining 40 mls per day they said they we would try and remove the drain to see what happened.  It worked! 

His first breast feed in the high dependancy unit following surgery, just magic, but still hard work for him.

I love this photo so much, little starfish fingers!

Re-establishing breast feeding after cardiac surgery wasn’t easy, in fact it was almost like having a new born  baby again as we both had to lean what we were doing all over again.  Milo’s latch was terribly weak and he would click and gulp a lot of air and he suffered from terrible colic like symptoms.  His tummy was also still quite sensitive from the NEC I feel, and it was weeks before his poo’s looked less green and more normal again.  The staff were great though and gave me the flexibility to gauge how much milk I should top him up with down his NG tube and this gradually reduced until I became more confident in Milo and his breast feeding.  His weight gain was a big worry and as he hadn’t been weighed for the 3 weeks that he was on a ventilator it was difficult to know whether he should still be losing weight as he had so much swelling to lose or if he should be gaining it.  Eventually the staff realised that his dose of diuretics was too high and then he started to gain true weight on non-fortified breast milk for the first time ever, what a confidence boost!  Breastfeeding him was a healing experience for us both.   I needed to finally be able to feel close to my baby and he needed to feel the love of constant, secure human attachment rather than a hospital cot. 

Whilst at home and 8 weeks after his first operation I decided to take the plunge and remove his NG tube.  But just 2 weeks later he caught another bout of bronchiolitis and after a few days of his oxygen requirement increasing they discovered that his pleural effusion had returned.  Once again they advised me that I probably needed to stop breastfeeding Milo as it was more than likely chyle that was leaking again. Thankfully they started him on intravenous diuretics which helped to resolve his pleural effusion and I was very relieved once again.  Another few weeks of the NG tube and we were finally on our way to enjoyable successful (dare I say it) easy breastfeeding!  Something which I feared we’d never achieve but appreciated so so much.  His latch and strength had both improved massively and these were also helped with his new found better muscle tone in his head and neck.  
Enjoying the magic moments

Those beautiful eyes......

Finally after 6 months of expressing milk every 3-4 hours I was able to give back the hospital grade breast pump that I’d loaned.  I was never more pleased to see the back of that faithful piece of annoying equipment!

When I was weaning Milo off of his NG tube I know that his intake never came any near to what the dietician wanted it to be (I know because I was so paranoid that I would weigh his nappies).  I knew though that the only way that I would be able to challenge him would be just to remove the tube altogether.  Even then his intake didn't increase much and he rareley had long breastfeeds (more than 5-10 minutes).  He never had the sudden growth spurt that many babies experience following cardiac surgery so I decided that as well as breast feeding I needed to encourage calories via his solid foods.

Milo has taken well to solids.  I had a feeling that he would do as he enjoyed the process of taking his medicines orally.  It’s taken time and patience but at 11 months old Milo now has 3 meals of textured mush per day and 2 puddings such as half a banana or a yogurt.  I do fortify his foods with extra calories a bit as his weight is on the lower limit of normal. He also still breast feeds well, although he has been sweaty with breast feeding this summer but his cardiologist has reassured me that it’s a temperature control issue and not cardiac.  He’s also recently discovered how much fun finger foods are, and I think it’s great fun watching him too!  I think that he was waiting to enjoy this stage properly once he was able to sit up himself, which makes sense as a developmental milestone.

I have no plan to stop breastfeeding, it would be lovely to reach 2 years with him though, and that’s my target.  He enjoys it and asks for it now by swinging his body and burying his head in my top.  Although he can go a surprisingly long tome without asking so I also offer water from his beaker or practice with the  straw that we’re encouraging.  I also know that the antibodies that he’ll gain will help him enormously over the next winter and beyond. I know how lucky we are to have had the right support to keep going with all of the challenges that were thrown at us as so many people just simply don't get this support in this situation.  Although I do realise that my back ground knowledge as a stubborn midwife has also helped me enormously on this journey!
When he looks up at me and smiles during a breast feed it makes it all worth while.

I’m writing this journey as I’m proud of everything we’ve achieved together despite the enormous difficulties we've faced. The hard work and perseverance was all worth it.  Perhaps you’re reading this as you’ve experienced something similar or are expecting a baby with Down syndrome and are wondering what to expect with feeding and heart problems.  Milo’s journey won’t be everyone’s experience but I hope that there are elements of it that might help someone in the future. If any of these issues have impacted you I would love to hear how you got on.


  1. Oh my, such a wonderful post and so much of it echoed our journey although Natty's NGT came out after 3 months and she breastfed from there, but it was a slow process with many hurdles along the way. I do think it's worth it though, health and SALT benefits are enormous, as was bonding. I have a post yet to write but I am always afraid of sounding preachy, but you have managed to write this without doing that.
    Thank you for linking to #TeamT21

  2. Thank you Hayley. Gosh yeah it was certainly an epic and heartfelt post and I've read that you'd experienced some similarities. I hope it inspires you to write your post. Knowledge is power to women experiencing BF problems with a baby with down syndrome and there is a general lack of information on complicated stories so I'm sure it will help.

  3. Thanks for informative post. I am pleased sure this post has helped me save many hours of browsing other similar posts just to find what I was looking for. Just I want to say: Thank you!
    milk supply supplements