I had all these ideas of what I wanted to blog about next but then I was faced with every parents nightmare, my baby needed emergency life saving surgery. Let me rewind 12 weeks and tell you my story….
For the first 3 weeks of his little life my baby fed well and despite our struggles with breastfeeding he was rapidly gaining the weight he lost at birth. Amazingly he got back to his birth weight within 2 weeks which I truly believed was a major accomplishment. I was so proud that this little man was thriving on everything I was providing him with. Then slap bang out of nowhere came the howling, screaming and pulling legs up and arching back in the evening, yip its colic I thought to myself. With my previous little one I walked the floors from 6pm every night (yes she was on cue, right down to the very second that she would even put the precision timing of an exchange of guards at Buckingham Palace to shame) so I was well versed when it came to colic symptoms. Been there done that have got the t-shirt!
We gave him Infacol to try and help with the pain and then when he was four weeks old I tried gripe water, poor little fella choked something silly on it, you’d think I had just given him gasoline. But then his behaviour started to change, he cried and screamed sore during the day, before a feed, during one and even after. It was relentless. After a week of persevering we paid a visit to our local GP who looked at me like I had just bounced down from the moon. What was I even wasting their time for, I had a baby who cries, all babies cry, get on with it and it will stop at 12 weeks. Off I went home but with a terrible sinking feeling at the pit of my stomach that something was wrong.
Each week I go to a fabulous breastfeeding group with lots of amazing mummies and wonderful supportive midwives, by now they where all tuned into his behaviour and the thrashing around and crying when feeding but wheren’t quite sure what was wrong. Some thought he wanted a faster flow so suggested switch feeding. One of the midwives looked at his mouth and thought he had tongue tie and arranged an emergency appointment to get it looked at by an Oral Surgeon. I raced through the traffic thinking this is it, this has to be what is wrong and practically threw myself and my baba on his couch. It was confirmed he had tongue tie, before I even had the words out of what happens next the maniac was coming at my little angels tongue with some sort of mad scissor contraption and plyers. What was this madman doing to my baby! Don’t worry he said he wont feel a thing. Was this man on drugs, he was snipping my precious little baby’s tongue without any anesthesia. Here Mister do you want me to cut at your tongue with no drugs, see how you like it! He screamed and cried and gurgling a mouth full of blood he had to feed, I was told I would feel an immediate difference, did I, well no, but I went home thinking that over the next few days my little man would learn how to feed with his newly released tongue and everything would get better.
The following week at group there was no change and we all watched my angel scream and cry and refuse my breast. That’s when one of the other mummy’s said it looked like the exact same symptoms her two babies had and threw Silent Reflux into the mix. I went straight down to my Doctors demanding Losec in the hope that it might solve our problems. This was my fourth visit to the Doctors, you’d think by now these so called medical geniuses would have suggested reflux. The Doctor said she had her suspicions (seriously lady why didn’t you say so before) and prescribed Losec Mups. The Pharmacist handed them over and explained how I needed to crush the tablet down and dissolve in water, say what, you want me to give my baby a crushed tablet, its maniac time again I thought to myself but by this stage I was pretty desperate and thought well its better than nothing. We tried and battled for a week and instead of helping him, it made him gag and vomit each time I tried to administer this god awful medicine.
A week later at group I updated everyone on the past weeks events and the midwife looked at me and said its the suspension you need, suspension??? you mean there is actually a baby friendly version of this medication. Straight on the phone I was with those Doctors trying to request a call back. The receptionist said I would have to request a call back and wait until the Doctor gets through his calls. Easier said than done, I waited 4 hours, and that with a screaming baby in pain is no mean task. I could take it no more and drove down and paced about the waiting room until I was allowed to speak to the Doctor. He sat me down and said the suspension is far to expensive, they do not prescribe it anymore (very strange considering other mummies at my group are able to get it), if a little baby needs medicine are they really going to refuse it because of cost, what else are they going to refuse people, is a cancer patient going to be refused morphine or an asthmatic their inhalers! the mind boggles, the way he was going on you would think it was coming out of their own pocket. He suggested giving me Lansoprazole to try which was an easier tablet to dissolve. He said he didn’t really believe Silent Reflux exists and I unfortunately have a baby who cries a lot and it would pass by 12 weeks (there’s that magic number again that when everything apparently gets easier and unicorns and fairies appear) I left the surgery in tears with my howling baby and having no faith in these Doctors at all. I was beginning to think they all received their registrations in a lucky bag. All I kept asking myself was why no-one was listening to me. I knew there was something wrong.
After nearly two weeks the lansoprazole was not helping, if anything he was getting worse and to top it all off he was badly constipated. I knew this wasn’t right as breastfed babies do not get constipated. He was in so much distress and straining to go I took him to the Dalriada Doctor (which is our Out of Hours GP Service at evenings and weekends) there I was told that lansoprazole can cause constipation, great why didn’t anyone think to tell me that! We where sent home for a few hours to get a urine sample. When we returned his urine was tested and we where informed that it had blood in it and because of his age he would need admitted to hospital for treatment of a kidney infection. When we got to the hospital and the same urine sample was tested we where told there was no blood in it, how could the Doctor have misread that, registrations in lucky bags springs to mind. We sat in the ward for what seemed like an eternity (7 1/2 hours to be precise) before any Doctor came near us. Eventually a lovely Doctor examined my baby and said he definitely has silent reflux, she could hear the gurgling when he lay down and when he was held upright he stopped his screaming. He had lots of other symptoms relating to it also. She said he was on the right treatment and to give the medication the two weeks to take effect. It was nice to have a diagnosis but alarm bells where still ringing in my head.
Another couple of weeks passed and I had went to a few La Leche League meetings, met with Breastfeeding coordinators and even took him for Cranio Sacral Therapy in the hope I could solve what was wrong. One Monday morning he wouldn’t stop screaming, it was worse than ever, no matter what I did I couldn’t console him so I went straight to A&E. I found the Doctors very patronising, one Junior Doctor even had the nerve to look up to the ceiling and let a big sigh out and closed his eyes as my baby wouldn’t stop crying, if you don’t like children what the heck are you doing working in a hospital full of them. When I asked for another Doctor to assess him she wasn’t much help either. She started talking to me like I was a child and said there is nothing wrong with my baby, he does not have anything seriously wrong with him, he has reflux and she would phone my Doctors to get the suspension prescribed. She also went on to say my baby would not be getting any benefit of breastmilk after 3 months, seriously where do these people get off, do they not know anything. If it isn’t beneficial why does the Health Board say to exclusively breast feed up to 6 months and then continue up to two years alongside solids. She said because I was very concerned she would refer me to the rapid response clinic to follow up on his reflux. I left again feeling even more deflated and that I was the worlds worst neurotic mother, I kept praying that someone would listen to me and that there was something else causing him his pain. We received our appointment for the next week and thankfully we met with a Consultant who did listen and agreed my baby was in pain somewhere. The reflux medicine was not making any difference so she arranged some tests for him and one was to have a Barium Meal the next week. Finally someone was taking notice.
The day had arrived that finally we might get some answers and after four hours of fasting we made our way to children’s x-ray not knowing that later that day our world would get turned upside down. My little man was a trooper despite being starved and held down on a cold x-ray table having to drink some vile chalk concoction for the test. Afterwards the Doctor reviewed the x-rays quickly and said they could see the reflux but everything else looked ok. She would review them and report back to our Consultant. We had a few other appointments that day down in Outpatients as my baby has a heart murmur which also needed investigated. We where no sooner down there when the Consultant came running over, all I can remember is twist in bowel and go back to x-ray. She was away to talk to surgeons and would meet us in the Short Stay Unit where he was being admitted. When we got to the ward a couple of Doctors came to meet us and said no there wasn’t a twist, everything was ok and they where only going to observe his feeding for 24 hrs, what a huge relief, my mind was working overtime, but why was everyone saying something differently. I ran out to phone family and tell them the good news whilst my little bundle was laughing away in the cot and watching the TV having a good old chat to some strange looking creature, all was good.
He was really contented and I felt so relieved that he was going to be ok. The moments that came after went from joy to total and utter fear, a group of Doctors, Consultants and Surgeons came to talk to me. After getting me to explain all the past several weeks events and getting an overall picture of his symptoms they told me that my beautiful little angel had malrotation, they explained that his bowel had formed in the wrong place and he needed life saving surgery to prevent a twist which could be fatal to him. I didn’t know whether to scream or cry I was just motionless for a moment. The world had stopped spinning, all this time the source of his pain had been this. It was then looking over at my little angel the panic set in, I questioned everything, who was doing the surgery, where they training, where they experienced, would someone monitor his fluid intake afterwards, would he get hyponatremia, would he survive the surgery, I was frantic with worry and then I couldn’t stop crying. Here where this group of professionals standing over me telling me how they needed to do this and I just couldn’t stop my brain from thinking all these terrible things. Why did no-one realise this before now, why did no-one listen to me on my endless visits to the Doctors, why did they not take me seriously in A&E and would my little angel be took away from me before he even had the chance to live his life. I appreciate that the outcome could have been so much worse, and that other parents get told even more devastating news every day but this was my beautiful little angel and I was unable to help him before now and protect him from being in pain but I took solace knowing that my perseverance had helped him in the end.
His surgery was scheduled for the next morning and I held him tight all night and cried sore, I should have shares in Kleenex I used so much tissues, I was terrified my little baby was not going to make it through his surgery. They get you to sign all these forms and go through all the risk factors that make you ask yourself why the heck am I allowing them to do this. I waited for what seemed like a lifetime for them to come and take him away to theatre but the surgery was put back until the following day. Another 24 hours to go through this agony and worry. I had mentally geared myself up for it and then to have to go through another day worrying even more, and googling everything I could possibly find about malrotation, this was not my brightest idea I was now on a whole other level of anxiety. Any parent who has the misfortune to have to watch their child go through surgery understands the absolute terror you feel, I was very blessed that his surgeons and anaesthetists where extremely understanding and very talented at what they do and I had to put my trust in them that they would do their very best with my baby. I carried him up to theatre thinking was this going to be the last time I would ever hold my angel, would he get through his surgery, would there be more complications or something else found. I just wanted to hold him forever. I was a mess, I have never cried so much in my life, the love I have for this little being is unbelievable and here I was handing his tiny little body over to these people I knew nothing about and putting all my faith in them that they would take good care of him and keep him alive.
I don’t really remember much about the next few hours other than me wondering aimlessly through the hospital grounds like some mad woman. I eventually made my way up to the ward where he would hopefully return to and thought to myself what can I do for my little baby now and that’s when I began pumping. I knew I had to express to keep my milk supply up for him and it give me a great sense of calmness that I would be able to provide him with something that would help him recover quickly. When he was able they would be able to give him my milk via a feeding tube. When I had finally worked out how to use the contraption resembling something a NASA engineer whipped up I went in search of a fridge. That’s when I heard the surgeon behind me, I jumped and turned around, he scared the life out of me, my heart was racing, why was he here so soon, he told me approximately four hours it was only around two. What is wrong I just about got out of my mouth when he said the words I so wanted to hear, everything is fine, its all finished it went perfectly. My legs nearly went, was I hearing right, the sense of relief that flooded over me was unbelievable. I wanted to hug this surgeon and never let go. Very soon I was going to be reunited with my little angel. Thank you God I have never prayed so hard in all my life.
This is my little angel just out of theatre. I wanted to hold him more than anything. He was safe, these amazing surgeons had took care of my baby just like they said they would. I will be forever grateful to them for that they did. A few days later and he is recovering better than expected. My wee champion, even with what he went through he still has a smile for his mummy. We where so lucky, the outlook could have been a whole lot worse had I not been so persistent and kept trying to get answers. My advice to all you mummy’s out there, trust your maternal instinct you have an intuition that surpasses any logic or explanation someone tries to give you. Don’t give up fighting for your little ones because we are all they have. We gave them life, and we will continue to do everything in our power to protect that. If you think something is wrong don’t give up. As the old saying goes “Mother Knows Best”.