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#1 of 4 Old 08-04-2013, 07:05 AM - Thread Starter
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It was a Saturday night when I finally went into labour - for real after 2 nights of pre labour! My doula Zita arrived and supported me, alongside my husband throughout the night until our beautiful baby boy was born at home in water on St. Patrick's day.
Everything went smoothly and I was soon cuddled up with him in bed to start our baby moon!
But two weeks and 2 days later everything was about to change...
On Tuesday morning, the 2nd April I got a little niggling feeling something wasn't quite right but brushed it aside as mummy paranoia.
As the day progressed I realised there really was something wrong. My baby boy was struggling to breathe. He was heaving just like I'd seen my oldest boy do when having an asthma attack.
When my husband Mike returned from work we took him to see our GP.
I will never forget the look of sheer terror on Mikes face when the doctor said we should go to Hull Royal infirmary but on second thoughts made the decision to call an ambulance as it would get us there quicker. On the way there we called Zita who came as soon as she could to support us yet again.
Rubens oxygen stats were fluctuating between 65 and 95. After just shy of 36 hours in Hulls HDU the decision was made to transfer Ruben to Glenfields hospital - a specialist peadiatric cardiac unit. There was "something wrong with his heart".
Words cannot describe the fear, the terror, the panic and distress... I was in shock and went into autopilot.
I contacted everybody I knew who could help me express my milk for Ruben as I wasn't allowed to feed him anymore. I'd never been able to express before but with the support from friends I managed.
Ruben had to be intubated for the transfer to help stabilise him and I had to leave the room. I kissed my boy goodbye and prayed I would see him again alive. As we sat down in the other room I broke down and cried like I'd never cried before. I didn't know if I would see my baby alive again. The exhaustion finally took over and I fell asleep sobbing, curled up in Zita's arms.
Mike had to go back to the two older boys and Zita came with me to Glenfields where Ruben was diagnosed with a complex congenital heart defect - Transposition of the great arteries and two holes in his heart.
He needed emergency surgery immediately. I signed the forms and broke down.
In the early hours of the morning on the 4th April we were finally allowed to see ruben. He looked so peaceful despite his breathing tube. The operation had been a success and his stats had stabilised and were in the high 90's!
After a couple of days he was taken off his breathing tube and I was able to hold him! Another couple if days later we were on the ward and I could finally start Breastfeeding ruben again and carrying him in my sling.
We got roomed in together and the next few days were spent in bed, cuddling, feeding, or pacing the corridors with ruben in the ring sling, reconnecting and healing a little from the stress of the last week. I felt like the sling was keeping him protected. I was his safe haven for a short while at least. When he fed and fell asleep, milk drunk, he would smile in his half sleep and it melted my heart.
The day of his open heart surgery soon approached though and once again we had to say goodbye to our son. This time daddy carried him down to theatre. We laid him down on the table and kissed him and held his hand until he went to sleep. The image of his tiny body in his surgery gown is etched in my mind for ever.
What followed was the longest wait of our lives.
The operation took all day and the relief when we got the call to say everything had gone well was immense. Unfortunately this was short lived as the scan on his heart revealed a residual leak on one of the holes in his heart which needed to be fixed which meant more open heart surgery.
Between Monday the 15th of April, the day of his first OHS and Friday the 19th, his second OHS Rubens chest was left open to avoid putting the heart under too much pressure. He went into acute renal failure and was put on a form of dialysis. He was fighting for his life.
The surgery on Friday went well. His kidneys started working again which was a relief! But he was still very swollen and needed to lose a lot of fluids before he could come off the ventilator.
On Tuesday surgeons removed a line which measured the pressures in his heart but as they did so they discovered a clot in his heart. He was put on heparin, a blood thinner to hopefully dissolve the clot.
This was not good news.
But it got worse.
They also put a chest drain into the pleural cavity of his left lung. He drained 250ml of fluids that had been building up and threatened to collapse his lungs. The reason for the fluid was chyle. Ruben had developed chylothorax as a complication from open heart surgery. My world broke down around me once again.
Not only could I not hold my baby but now, the one thing that I could do for him to help him get stronger, I couldn't do anymore. He couldn't have my breastmilk anymore.
Chyle is made up of fats which are usually transported up in the lymphatic system and into the bloodstream. But his lymphatic ducts had been damaged and now this fluid was leaking out. He had to be put on a low fat diet for 6 weeks which, as standard, meant formula.
All my friends rallied together to help find a way for him to have my milk and we got *this*'close to achieving it. There *is* a way of skimming human milk in a centrifuge to give to babies with this condition. Unfortunately the dietician wasn't on board and in the end it all hung on her decision. I feel wrecked with guilt that I didn't fight harder, that I didn't insist because I know that it has been done. The only consolation I have is that after lots of research I persuaded them to reduce the time to 4 weeks.
After ruben was put on the formula and he had lost most of the excess fluid he was extubated and finally moved onto the ward again. He was put on more medication as he was Struggling to dogest the formula. His skin around his lips went dry and he had eczema on his cheeks. He had reflux and when he woukd fall asleep upright on me he woukd wake up after a short while, suddenly and scream in pain...the medications eventually masked the symptoms of his body's struggle to digest the formula...
But once again the relief was short lived as he developed an infection, was moved back to intensive care and was reintubated for 24 hours to stop him from arresting.
He was put on aggressive antibiotics. All I could think was that there was never a time when a child of mine needed my milk more than ever before but couldn't have it. To see my vulnerable baby, almost skin and bones struggle through so much was heartbreaking. The chyle stopped flowing at least and the chest drains could be removed. At last I could cuddle him now without the drains causing him discomfort.

As he recovered from the infection the nurses and doctors tried to get him off CPAP - a type of breathing support which delivers continuous positive air pressure into the nostrils. After a few days of failed attempts they scanned him again to check that his diaphragm was working properly. The bad luck didn't want to end quite yet and we were told he would need yet more surgery to plicate his diaphragm
As the nerve had been damaged and the right hand side was paralysed.
More surgery. Once again we carried Ruben into theatre and watched him be put to sleep. Thankfully these few hours passed quickly and everything went alright. We didn't even see Ruben intubated this time as he protested the tube so much they decided to take it out only half an hour after returning to the PICU.
Finally things were looking up. We spent another week on the ward and then transferred back to Hull.
4 weeks after his chylothorax diagnosis we were back where our nightmare had started. But this time we were celebrating. Ruben had his last bottle of formula before we left glenfields hospital. As soon as we arrived in our room in hull royal I took ruben out of his transfer pod, sat down and after 5 weeks I breastfed him again.
5 weeks of pumping. 8 weeks of ups and downs in hospital. Endless cups of coffees and conversations with other parents in the kitchen. Over 100 bottles of milk pumped. Too many tears. So much fear. But we made it. We came through it. I celebrated silently as I sat down in that chair in my room, lifted my top and Ruben latched on. A silent tear of relief and a smile on my lips. Now he could really start healing. Now our emotional healing could begin...

It is now 2 months since we left hospital.
Ruben has been gaining weight beautifully and has gained over 7lbs since our discharge. The last time he was weighed in hospital he was just about to reach his birthweight again at 2 months old!!
I spent the first week making up for our babymoon that had been cut short. I spend most days in bed with ruben feeding and building up my supply again. I carried him in his new sling, which friends had made for me. We cried and we cuddled and we stayed up late together as we relived those 8 weeks.
We are still healing. But we are ever so grateful that we are home now and things are looking good.

While we were in hospital two other families were there too who I spent a lot of time with.
It breaks my heart to say that both of these families baby's grew wings.

Rubens heart sister, Sienna, had the same condition as ruben and the same complication - chylothorax. Unfortunately she didn't respond to treatment and after three months the fight became too much for her.
Her parents are raising funds to buy another light and sensory machine as sienna liked looking at the lights so much.
They've already raised an incredible £15000!!
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#2 of 4 Old 08-04-2013, 07:20 AM
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Wow mama, I am in awe of your strength and persistance with breadtfeeding your sweet Ruben. Im so sorry that you and your family had to experience that while your baby was so young, but I'm glad things are finally looking up. You are such a great mama, he is lucky to have you! Thank-you for sharing your story.

Mama to Conejita 2/2/10 and Little Stinker 6/28/13. Expecting a surprise in late March!
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#3 of 4 Old 08-05-2013, 12:09 AM - Thread Starter
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I had been Breastfeeding non stop for 6 years so I wasn't going to let this stop me!
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#4 of 4 Old 08-07-2013, 03:37 AM
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What an incredible story of hardship and perseverance. You are a pillar of strength and an amazing woman. I'm so glad baby Ruben is on the mend but I'm so sorry to hear about Sienna and the other little one who didn't make it. Lots of love to your family and healing thoughts hug.gif
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