We had issues from the get go with Teddy feeding- or not feeding as the case may be. As I have mentioned in a previous post, I tried to breast feed- he didn’t once feed from me and I soon learnt it was nothing personal 😉.
Whilst in hospital after Teddy was born, I tried to get him to latch on every 3 hours. I lost count, and the ability to give a shit, about the amount of people who had seen and man handled my boobs in an attempt to try and get this now labelled ‘lazy’ baby to feed; and was having daily visits from a lady from the breast feeding support team. Now, if breast feeding is a top priority for you, then I’m sure this woman is great, because she was persistent……a persistent pain in my arse! It wasn’t a priority for me, it was a ‘great if it works, and great if it doesn’t- Adam can help with night feeds’ 😊 She wasn’t getting that message though. I got to the stage where I just wanted to get nutrition into Teddy and I didn’t care what form it came in- I eventually asked the staff not to let her in to see us again- I was going to do it my way.
I was producing enough milk to feed the whole of the maternity unit- staff and all! My stock pile in the ward fridge was almost embarrassing- there was rows of 100ml bottles next to 1ml syringes that other Mums had expressed. I can hear breastfeeding mums being envious….. but here’s the other side……I remember getting all set up in my side room ready to have some skin on skin time with Teddy; we were approaching the 3 hour feed mark so I was hoping this might help gee things up. I stripped him down to his nappy, got comfortable on the bed and lay him on my chest under a blanket. It was a matter of seconds before my boobs started to leak- I could feel the milk running down my stomach and sides making puddles on the bed sheets. I’m now freezing so that was our skin on skin time over- hardly the relaxing bonding session you imagine! In addition to that, wearing an unwired breastfeeding bra just doesn’t cut the mustard for someone with humongous hooters. I needed proper support, my boobs needed to be in their own camp, not rubbing up on each other getting all sweaty. Then add the milk leakage into the mix….bringing a lovely rash under my boobs which spread down to my stomach…..I know what you’re thinking…..MILF!
I quickly gave up trying to breast feed- for me it just wasn’t worth the hassle- it wasn’t like he was was trying, and we just needed to establish things…..he literally showed zero interest. It felt like I had tried most options available and considering it was never a priority for me, I was pretty pleased with sticking it out for that long! I continued to express every 3 hours for the first month before calling it quits- this made feeding times about 2 hours long! An hour of persevering trying to get the bare minimum amount of milk into Teddy, then 30- 40 mins of expressing and storing/ labelling of milk and defrosting, sterilising blah blah blah… By this time, we had a freezer full of breast milk in so could slowly wean onto formula.
As time went by, feeding remained tedious and Teddys weight was only increasing very slightly which meant he was dropping on the centile chart. The Paediatrician recommended starting to wean him at around 5 months to see if we had any luck with solids. We didn’t. Any type of texture in his mouth made him balk and vomit. He would shake his head from side to side in an attempt to avoid any food and quite often a bottle going into his mouth. I tried so many different textures, flavours, temperatures, spoons, finger foods and weaning nets- some of which were successful- sometimes- on some days, and not on others. None though, reliable enough to get provide any type of sufficient nutrition.
When Teddy was admitted to hospital in July 2018, he was diagnosed with Congenital Hyperinsulinism, which meant that he produced too much insulin, making his blood sugars drop dangerously low (AKA hypo)- relying on milk to bring the blood sugar back up. I remember the first time a doctor suggested inserting a nasogastric tube (NG) as they were concerned about running into a situation where Teddy would have a hypo and not drink enough milk to correct it. I refused. Being a nurse myself, and having time away from this situation to reflect, I absolutely understand where they were coming from- I mean, we want to avoid the shit hitting the fan! Or at least be as prepared as possible for when it does. But at that moment, I was in Mum mode, denial mode, panic mode…..and totally exhausted! I didn’t want this to be happening, having tubes was more confirmation that there was an issue and as far as I was concerned, there had never been a time were Teddy didn’t drink enough milk to correct a hypo so why put in a NG?! I wanted to believe that something would click and Teddy would enjoy drinking his bottle or weaning.
A few days later, I was able to listen and absorb what the medical staff were saying instead if just ‘hearing’ it. Who was winning from avoiding the NG tube? Not me- who had to wrestle with Teddy to practically force feed him every three hours, or stress about getting enough milk into him to avoid another hypo; and defiantly not Teddy, who HATED feeding and was clearly upset with each attempt. In went the NG tube.
I say that as though it’s like putting the lid on a pen- as easy as that, however, this was something I found so stressful. I knew it wasn’t a pleasant experience for Teddy- we had to swaddle him so he couldn’t wriggle or move his arms about while this tube was passed up his nose and down the back of his throat into his stomach. He hated this more than he hated a bottle! But it was temporary- once it was in it was in. Ish.
I done my fair share of partaking in the process of inserting a NG tube….. AKA pinning him down while a nurse did, but I got to the stage where I couldn’t take seeing him so upset, so Adam was delegated this job! One time, I went and stood at the exit of the ward while a new tube was being inserted and could still hear him crying from there.
OK, so now we had an NG tube, Teddy could take what he wanted orally purely for pleasure, and we could use the tube for what NEEDS to go in and we didn’t have to wake him through the night for three hourly feeds…… who am I kidding- he didn’t sleep anyway!
As we endeavoured to resolve one issue, another would appear. OK we now had a way of getting food into Teddy without causing distress for him, but Teddy playing ball and keeping the bloody thing in his nose was another story….causing distress for me! I couldn’t take my eyes off him. He constantly had his fingers in his mouth and in an attempt to find the target, he would catch the tube right by his nose with his fingers and accidently whip it out in a flash.
One time, I was headed out of the hospital with Teddy for a few hours day leave. I was meeting Adam at my parents house for tea, so it was just the two of us in the car- Teddy in a rear facing car seat in the back of the car and me driving. I was stopped at the lights when I noticed in the mirror that the little devil had managed to hook the NG tube. What should have been visible was a small piece of tube, just a cm or two in between the end of the plaster on his cheek and his nostril. Instead, I turned around to see a humongous loop of NG tube. In a desperate attempt to save it from coming out completely, I turned into a ninja, stretched to back to Teddy, (let’s not forget- in his rear facing car seat) and shoved that NG tube right back down his schnoz.
It was clear that Teddy needed feeding support long term so he was listed for a Percutaneous Endoscopic Gastroscopy (PEG)- which is a feeding tube that goes directly into the stomach, is a more permanent fixture and was a little trickier to pull out! By now, Teddy’s liver was huge and potentially obstructing the stomach a little bit and so the gastro team, who would usually do this procedure were reluctant to do it and handed Teddy over to the surgical team to review.
I was so ready to get rid of this NG tube. I was on tender hooks because of it 24/7, plus it was also delaying Teddy being discharged, because in order for his blood sugar to be controlled overnight, he needed to have a continuous feed running slowly right through the night, and it was the hospitals protocol that this couldn’t be done at home via NG tubes in case they become dislodged.
I had already been told that there was a lengthy waiting list for this type of surgery so I was under the impression it would be a good few weeks, maybe even months before we got a date for this.
The surgical team came to review Teddy, they were confident that they could get the PEG in, but obviously discussed a Plan B if needed, and the increased risk of bleeding in theatre. (Teddy’s blood was thinner than it should have been, and having a big liver meant there was some extra blood knocking about in it, putting emphasis on the importance of avoiding it during surgery.) They told me that they would put him on an emergency theatre list for the following day so it would all depend on what comes through the door if he would get it done or not.
I was over the moon!!!!! I actually told the surgeon that I could have kissed him. (Quickly providing reassurance that I wouldn’t!) He stood there; stern faced as though I had just punched his mother in the face! Note to self. Don’t be too familiar.
I held Teddy in my arms as I watched the anaesthetist pump anaesthetic into his cannular. The earlier warning about him coming alarmingly floppy as he goes to sleep was appreciated, but unnecessary given Teddy was like a rag doll anyway. I placed him on the theatre trolley and asked the surgeon and the anaesthetist to look after him. I know that’s a stupid thing to say- I mean, you would like to think these people in these professions know what they are doing and are going to look after your child; or if they are the next Harold Shipman, they are too fucked up in the head already- I’m pretty sure my request to look after my child will have fallen on deaf ears. But I couldn’t help it!
I got outside the anaesthetic room and bust into tears. Adam couldn’t come further than the theatre reception so it was down to the ward nurse who had accompanied us to offer a reassuring shoulder. I allowed myself a moment to lose my shit, then put on my game face and headed out. Adam and I went down to the hospital café for some lunch before heading back to the ward less than 30 minutes later to play the waiting game of Teddys return.
As we walked onto the ward the surgeon was walking off! Oh Shit! Why is he here, and so soon?
Well we could breathe a sigh of relief. It was done, it went to plan- without any hiccups and Teddy was in recovery. He came back to the ward with his NG tube being removed and I’m not going to lie, a little bit of me loved post op Teddy- he was so sleepy and snuggly so I made the most of having some chilled out cuddles.
Considering how reluctant I was for a NG tube to be introduced, the PEG tube couldn’t have been more welcomed. There was very few cons. I found out the biggest one as I placed Teddy into his cot one day. He has fell asleep in my arms so I leaned over the cot side to place him inside. He woke suddenly screaming crying. I noticed that I had trapped the PEG tube between by stomach and the cot as I placed Teddy in- the PEG tube was completed stretched and clearly pulling from the inside of his tummy. It knocked me sick! I was gutted! And thankful that I didn’t pull the bloody thing out!
On the whole though, it was a life saver and absolutely the right thing for us and Teddy.
I continued to persevere with oral diet, but I was able to concentrate on nice treats. Using a weaning net his favourites were Milky Bar or Mint Aero and strawberries. He regularly had tiny bits or sorbet or squirts of water to keep his mouth fresh.
So, the moral of the story is….. feed your kids….in whatever way is best for them AND you!!
Blog big ups go to:
- Women who breast fed their babes
- Women who bottle bed their babes
- Women who tube fed their babes