Month 2: Home Alone and Reflux Hell

7 Oct

4 weeks after Leo’s birth, and the time came for me to go it alone. My mother and husband had both exhausted all of their leave and I could no longer rely on their daily support. Would I hold it together? Would I know what to do? Had my health recovered enough?

My first day at home alone with Oscar I fell apart. As soon as he cried, I burst into tears and begged him to tell me what was wrong. As if he could!

But this time I was determined to succeed. The reflux worried me. My c section scar was a concern, but I would remain calm if it killed me. I still couldn’t drive,so isolation was a possibility, but as luck would have it, a nearby neighbour had just had a baby too and was up for some walks and chit chat.

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The first week seemed to go relatively smoothly. Leo still cried a lot from the pain of his reflux, and screeched, gulped and fidgeted in his sleep, but I knew his ways by now and was prepared to just take each day as it came. However, by the second week on my own, life was becoming harder. Leo started to take less and less of his Pregestimil milk and was vomitting more and more up.

He also became sleepy constantly. It was as if his body was fighting against something.

I tried phoning the doctor to say that he wasn’t coping, but she refused to see me, stating that they had prescribed Gaviscon and couldn’t do anything else. I was instead instructed to take him to A&E.

I called my husband who agreed to take the following morning off work and drive Leo and I to A&E. When we arrived, we were directed to the in house GP, who was angered by our local doctor’s refusal to examine Leo. He confirmed that he looked well and that all of his vital signs were normal. He felt that the Gaviscon alone was not sufficient to combat the reflux and prescribed Domperidone – a drug that strengthens the muscle at the top of the stomach and helps the food contents to empty faster.

I had researched this drug, along with just about every other common reflux medicine and was a little concerned by reports that it was no longer advised for babies with reflux due to certain side effects. I asked him if he was aware of this, and the GP said that he wasn’t aware of any concerns and was still able to prescribe it.

We were discharged shortly after, collected the prescription, and made our way home.

When I got home I opened the box containing the medicine and read the leaflet for side effects. Immediately, I spotted what I had feared…. “Can cause heart defects, involuntary muscle twitching, stomach cramps etc etc etc”. How can I give my tiny little boy a medicine that stops him being sick but causes heart defects?

I read the leaflet over and over, then felt sick myself. I just couldn’t do it to him, so I put the box away, enrolled my baby onto my private health insurance at work and immediately booked an appointment for the weekend.

By the end of the week, Leo was barely taking 3 Oz per feed and was vomitting constantly. By Saturday morning, I couldn’t wait to get to the hospital to meet the consultant.

He examined Leo and confirmed that despite his obvious issues, his vital signs were good. His colour was good and his weight was acceptable. He took a history of his symptoms since birth, and asked us to provide an account of our eldest son’s dairy allergy.

After a short discussion, he concluded that Leo probably had a cows milk protein intolerance like his brother, which was causing his reflux and vomitting, and advised that Pregestimil was not suitable for him as it still contains trace elements of cows milk protein. He therefore recommended a month long switch to Neocate hypoallergenic milk, coupled with a 28 day course of Omeprazole to allow the acid damage to his oesophagus to repair. As the prescription would be expensive to fund privately, I phoned the chemist to order the new milk, battled with the Pregestimil until Monday morning, then phoned the gp surgery to ask them to convert it to nhs.

The snooty Surgery Manager scoffed at me and said “we can’t do that”. After a bit of begging, that changed to “it is at the doctor’s discretion, but would take at least 2 days”. I asked her if she expected me to feed my c.1 month old baby a milk he was allergic to for a further two days, and stated that I had arranged a lift to the surgery in 10 minutes and would be arriving shortly to wait for the prescription. Dumbfounded, she said she would speak to the doctor, but couldn’t guarantee anything.

When I arrived at the surgery, the receptionist acknowledged me and said she knew why I was here and that she was awaiting a signature from the doctor. I took a seat, and waited. After 5 minutes, she came over and said that the doctor was aware of the need, but would read the letter from the paediatrician at lunchtime and then issue the prescription. I said that I couldn’t drive and could only get a lift this morning, plus, my baby needed feeding at 11am, so I needed the prescription now.

She shuffled back behind the desk, and then appeared a few minutes later to say he still wouldn’t do it until lunchtime. I begged her to ask him to prescribe just one tub of Neocate so I could feed him and to then release the rest later for my husband to collect. Again she scuttled off to enquire, and returned a few minutes later with the verdict. The doctor had agreed to prescribe one tub, but I would have to sit and wait. I waited for 10 minutes, until she arrived again, snatched the prescription from her hands, and legged it out to the car where my father was waiting.

We sped to the chemist and as I careered up to the counter and slapped the prescription on the desk, I spotted something odd. The gram weight was 525, a tub of Neocate was 400g. It was imprinted on my brain after years feeding it to my first son. Assuming that perhaps tub sizes had changed since I last used it, I was distraught when the chemist instead confirmed that they had prescribed the wrong milk. Of course! It was the toddler milk. Fecking useless for an infant. Now desperate, I asked the chemist if he would sell me a tub of the infant milk until I could get the correct prescription. He reluctantly agreed, so I handed over £33 (£!?&!””””?.?£&!!!) grabbed the tub, and jumped into the car to ask my dad to return me to the gp surgery.

As we pulled up, I leapt out, ran up to the receptionist, threw the prescription at the desk and breathlessly relayed the error. “My husband will collect the correct prescription at 6pm sharp, I have to go feed my baby”.

I steamed home just in time to prepare a 4 ounce bottle for my hungry boy, and despite it’s renowned disgusting taste, he gobbled the whole lotdown in record time, his biggest feed ever. And then a miracle. Instead of vomitting and crying he gave me the biggest smile, his first ever, and fell asleep.

I was elated. When he woke up an hour later, he was like a different boy. Gone was the crying, the fidgeting, and instead was a contented boy, happy to lie there kicking and smiling. I was so excited, I phoned every member of my family… My hubby, my dad, my mum to share the good news. Perhaps we had cracked it?

Over the following few days, Leo took to the milk well and the vomitting reduced massively, but he was still evidently experiencing discomfort in his throat from the acid damage. Therefore, I reluctantly started him on 10 mg of Omeprazole dissolved in water.

He took it well, but within 30 minutes his complexion had turned deathly pale and he became sleepy. I vowed not to panic, telling myself that he might just need to adjust to it, but it broke my heart to see my gorgeous boy looking so poorly.

Over the next week, his ghostly appearance continued but even worse, he began vomitting. By the following Monday, he threw up 7 times from his morning alone. I stripped him off, and fearing a trip to hospital, demanded that my hubby stay off work while we monitored him. Fortunately, the next bottle was better and the immediate concern dissipated, but as the days passed by, the vomitting became excessive.

Sensing an adverse reaction to the Omeprazole, I contacted the consultant in distress, and he advised us to reduce the dosage from 10mg to 5mg and report back to him at the follow up appointment.

Within two days of reducing the dose, the vomitting and sleepiness had almost stopped, but Leo retained the grey/white complexion.

At the follow up appointment, I expressed my concerns to the consultant, but since my boy had gained weight, and his pain had subsided, he was insistent that I continue the lower dosage and put up with the paleness until such time as Leo grew out of his reflux. Begrudgingly, I agreed to continue for a while longer and monitor his progress until the next follow up in 3 weeks time.

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8 Responses to “Month 2: Home Alone and Reflux Hell”

  1. journeyformybaby October 8, 2014 at 6:20 pm #

    Wow you guys had quite a hard time of it! I hope baby Leo is feeling much better now and not having so much pain. Poor little guy. I have reflux too and it is so uncomfortable. I can only imagine being a baby and having it with no way to get relief. 😦

  2. draxela October 10, 2014 at 2:28 am #

    This sounds like a horrendous experience! You poor thing! Hopefully things are getting better for you. Has Leo been assessed for a tongue-tie and/or lip-tie? My LO had MFPI but also a posterior tongue-tie and upper lip-tie. Once we sorted out diet and revised the ties the reflux was much better! Good luck hun. It’s so hard!

  3. joyandpops October 10, 2014 at 5:43 pm #

    I’m so sorry to hear what a hard time you’ve been having. The newborn/post c-section period is difficult enough without this extra stress and suffering. Really hope Leo is feeling much better now.
    Xx

  4. Merlinda Little (@pixiedusk) October 10, 2014 at 11:31 pm #

    Goodness. I am so sending you some hugs! I am so glad that he is doing well. I hope that he throat will heal well. I hope that you will get more support from your GP and well done you for not giving up! You are an awesome mum. I wish I can go to your house to help cuz I know how tiring it is. Again sending you hugs. #pocolo

  5. Hannah Budding Smiles October 11, 2014 at 6:34 am #

    I am so sorry to read what a battle you’ve had 😢My son has silent reflux and has been on Omeprazole since 6 weeks, thankfully without any reactions. We’ve been told his isn’t a cows milk protein allergy though. I really hope that things stay calmer for you xx #PoCoLo

    • ferreroroche123 October 11, 2014 at 6:52 am #

      Thank all for your support. It is a rollercoaster every day, but he is a lovely boy and we are determined to stay upbeat as much as possible until he grows out of his problem. Hannah, how old is your son and is the reflux improving yet?

  6. zofloya11 October 12, 2014 at 10:33 am #

    My daughter suffers from reflux too and it is horrendous she is on ranitidine for it as gavision didn’t work and Domperidone didn’t agree with her (she only took it for a couple of doses but it instantly didn’t agree with her. It’s heartbreaking to have to give these drugs to your tiny tiny baby reflux is an evil think. It sounds like you had a worse than necessary time of it due to lack of support from healthcare professionals which is juts plain wrong.

  7. Victoria Welton (@VicWelton) October 12, 2014 at 9:35 pm #

    Flippin’ blooming heck!! You absolute poor love. You really have gone through the mill and back with the pregnancy and it is continuing now Leo is here. You are an amazing person doing a wonderful job. Full of admiration for you. Thank you for linking to PoCoLo 🙂 x

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