When you’re pregnant with your first baby, you have all these idealistic views of how it’s going to be after you’ve given birth. I had visions of me being one of those mums, that was completely comfortable with the whole breast feeding thing. Calm, tranquil, an earth mother type (hilarious now, as I am faaaaar from an earth mother). I pictured myself with my newborn baby attached to my boob, suckling away beautifully. Reality in fact was very different for me. In my defence, and I’m not sure why I need to say “in my defence”, but mummies always feel an element of guilt if they don’t breast feed don’t they, I tried REALLY hard. When I say hard, I mean I gave it everything. I don’t think it helped that Oscar was taken up to intensive care a few hours after he was born so we didn’t have time and that initial bond that others had. They had let him have “a little go” latching on but after coming round from a General Anaesthetic, being told my baby had DS and the fact that I felt like my world had been thrown up in the air, flipped about a bit and had landed back down on that hospital bed with a slam, I can’t say that I was best fixed to try breast feeding with the purpose and gusto it deserved.
Oscar was whisked away and was initially fed by a tube. Those first few hours are hazy but I remember a nurse saying to me it’d be so beneficial, if I could give him my colostrum. Oscar was born in the early hours of Saturday morning. A low point for me was around 10 o’clock that night. Chris had had to go home, Oscar was upstairs in NICU and I was all alone in my hospital room (did I mention they gave me my own room?… I think I was a “special” case. Let’s give the girl who has just found out her baby has DS her own room so she doesn’t have to “mix” with the other new mums, was probably their thinking… Probably a wise move on their part). I remember lying on my bed, on my own, squeezing my blimmin nipples to try and get the smallest drop of colostrum into a syringe. Easier said than done I can tell you. And did I mention I was crying hysterically? Yep, loooooow point.
Up in NICU they had breast pumps which were loaned out to all the mums of the babies on the unit. A lot of the mums had had premature babies so had been “pumping” for months. I was a novice. I knew what I needed to do and my god did I want to do it for my little boy, but it hurt like hell and I didn’t appear to be producing much. I’d sit there for ages and only get about an ounce. In hindsight, I probably wasn’t eating and drinking enough around that time so that might have had something to do with it. Combined with the fact that I was pretty stressed/anxious/tired, all were contributing factors.
On the 2nd day, I was able to get Oscar out of his incubator and try putting him to my breast. He did well, he latched on… But he was lethargic and kept falling asleep. Being tube fed ensured that we knew he was getting enough milk, but every time it was time for his feed, I’d make sure I was by his bedside ready to give it another go. And I’m talking morning, noon and night. I’d set my alarm all through the night so that I could shuffle (I’d just had a C-Section so wasn’t going anywhere fast) up to level 3 to NICU to breastfeed my baby. The nurses encouraged me but still mindful to give him the formula through the tube just in case he wasn’t getting what he needed.
As I’ve said before, Oscar spent 10 days in hospital after he was born. I think around day 7/8 we were promoted to the Special Care Unit, where he was allowed to sleep next to me on a ward but he was still being closely monitored by the doctors and nurses. We realised around this time, that the only thing keeping us in the hospital was the fact that he wasn’t feeding properly. They said that I’d be able to go home with him feeding through a tube but would prefer me to be able to leave, if we were solely breast feeding. The doctor said, if you can breast feed him for 24 hours, without the need for a top up (via the tube) then you can go home. If there’s one thing at this point I was certain of, was that I wanted to take my baby home. I’d watched for over a week now, as couples had walked down the hospital corridor, carrying their car seats, seemingly completely unphased. I remember saying to Chris, all I want to do was to take Oscar home and walk down the corridor with my car seat. That’s where the photo originated from below. When we were finally discharged, Chris asked my mum to take the photo of the three of us walking out. We have a copy of it framed in our living room… It always makes me smile at just how poignant that moment was for us.
Anyway, I remember saying to Oscar, “We’ve gotta do this… You’ve got to breast feed if you want to get out of here… Come on, we can do this” and we did. On the 17th July, 10 days after Oscar was born, we walked down that corridor(with our car seat), having successfully breast fed my baby for 24 hours. If there’s one thing I can handle, it’s a challenge and it was game on.
I’d like to say it was plain sailing… But it wasn’t. When Oscar was born he was on the 2nd percentile for babies with DS. He was very low birth weight for a full term baby. He was just 5lb 2oz. Now don’t get me wrong, not all babies with DS have problems breast feeding. Some take to it with no trouble at all. Many babies with Down Syndrome have no sucking difficulty and successfully nurse straight away.
However, some can be very challenging to breastfeed for different reasons. Number one – It takes a great deal of patience to teach the baby to suck properly (and strongly) to obtain a milk ejection reflex and to stimulate the milk supply. Number two – It is also critical that you give good support to the head, jaw, and body of a baby with Down Syndrome, as they display general body hypotonia, or low-tone. Even if your baby is sucking poorly or requires tube-feeding at first (if they have other commonly associated medical problems such as low birth weight, cardiac issues, or jaundice… Oscar had ALL of these), we were told not to worry! Initial sucking ability has not been shown to be a major reason for stopping of breastfeeding. In fact, most mothers who have discontinued breastfeeding have pointed out that insufficient milk is the major reason they stopped breastfeeding, rather than the fact that they couldn’t do it. In my case, it was absolutely that. I wasn’t producing enough and with Oscar’s low weight becoming more of a worry as the weeks went on, I was encouraged to use a supplement.
Now in those first few weeks, we may have been discharged from hospital but we still had NICU nurses coming to our house every other day to weigh Oscar. It became a bit of an obsession for me. How many ounces had he put on in 48 hours? Had he lost or gained? If I timed it right I could get a feed in and then have him weighed, so it looked like he’d put on more when the nurses came. If he pooped just before the nurses arrived I panicked… “Don’t poop it out, Oz, we’ve worked hard on that feed.” Ridiculous. The trouble was, Oscar always use to fall asleep when he fed in those first few weeks. We knew there was a couple of holes in his heart but I think we underestimated in those early days, just how much of a strain it was on his heart to be working for a feed. After about 3 weeks, they started coming round with a fortifier. They’d say that I didn’t have to, but if I wanted to, we could start giving it to Oscar, along side his breast milk. I was reluctant. I’d mastered the breast feeding, I wanted to do it myself. I didn’t want to have to use a fortifier… I was an earth mother, remember?!?!? It took me another 3 weeks to finally give in as I realised that he simply wasn’t putting on the weight he should have been. So when Oscar was 6 weeks old he was prescribed a milk called Infatrini to help build him up. Infatrini is a nutritionally complete, energy and protein dense ready to use feed. It’s for infants with faltering growth or have increased nutritional requirements. I was gutted. I had so wanted to do it myself but I was worn out. I was breast feeding yet because I didn’t know how much he was getting, I was advised to express afterwards and top him up with a bottle. I was spending about 45 minutes breast feeding at a time, another 45 minutes pumping and then by the time I’d done all that, it was time to start all over again. I was exhausted. I got tonsillitis and I was no help to anyone, let alone Oscar. I had been defeated, so I caved and gave him the supplement. And truthfully, it was the best thing I could have ever done. He started putting on weight, he was more settled and in turn, I was less stressed. So I wasn’t going to win the title of “mother of the year”… My baby was happy, which meant, so was I.
So that was the beginning of Oscar’s ongoing battle with food. I say battle, it’s more my battle with trying to get Oscar to eat than his. He’s really not fussed and never has been. He’s never really cried for a bottle… He’d have to be starving for that to happen and in those early months, all I wanted to do was get milk into him so I never let him get to the starving point. I listen to all these other mums talk about how their children love food and how they can’t stop eating and realise that Oz has never been motivated by food. I think perhaps initially, because of the complications with his heart, having to feed, was simply far too much effort.
It is not always the case, but sometimes babies/toddlers with DS have hypersensitivity to taste. This can cause gagging or rejection of food if they can’t cope with the different textures. I don’t believe Oscar has sensory issues with food but I do believe that at times he rejects food because it might seem too difficult or too much of an effort to swallow. When we first introduced Oscar to solids, he did pretty well but then all food for small babies is puréed isn’t it? We had to be careful to make sure we placed the spoonful of food into the side of his mouth, so that he had a good chance of being able to swallow it. He had a habit and still does, of pushing the food back out with his tongue, even if he doesn’t necessarily mean to. He’s done brilliantly with finger foods. In true “I’m my own person and I like to do things myself” Oscar style, he likes the finger foods as he’s able to do it himself. He is fiercely independent and loves the fact that he’s in charge. When we’ve progressed to the lumpier or more textured foods, he’s not been as impressed. He’s gotten better but it’s taken a while. I’ve often joked that Oz could live off a diet of cheese and yoghurt. We’ve progressed to quiche now… And strawberries this week, so if he likes it enough, he can eat, hence my reasoning for not thinking he has sensory issues, but I guess it’s just that he’s not a massive eater.
I’m told he’ll get there and as always I listen and live in hope. I know that any child, typical or not, have their own hang ups too. Toddlers can be notoriously fussy and go through phases so I’m well aware we’re not alone. I think back to those early weeks and months and how my days were spent tickling his toes to try and keep him awake as he took his bottle and how every ounce of milk he took was recorded for the dietician. Fast forward to now and he might not be the best eater in the world, but last week at his paediatrician appointment he was weighed and he’s now on the 75% percentile for a toddler with DS. He has dreadful table manners (which we ARE working on)and food pretty much ends up all over him, me, the floor… Alfie, if he’s in the vicinity of the highchair. Poor little Alf! … but he’s giving it a go. Just this week he managed a whole bowl of pasta with tomato, mushrooms and a bit of cheese (standard). He didn’t use a spoon, he used his hands to eat it but I didn’t care, he was blimmin eating it. So I didn’t quite manage the breast feeding… He’s still healthy. And selfishly it meant that mummy could have that extra large glass of wine a little earlier than expected ;0) He doesn’t eat his greens, he eats far too much yoghurt and would quite happily live off the jam sandwiches if he had his own way… He’ll get there I’m sure… Just in his own sweet (messy) time.
Pic 1 – Before the mess
Pic 2 – Tube fed
Pic 3 – Oscar at 6 months trying sweet potato
Pic 4 – Walking out with our car seat ;0)
Pic 5 – Mastering spoon in yoghurt
Pic 6 – Oscar today