Tuesday, 29 May 2012

The Turn around

The boys have been running us ragged since they came home. To the point where I was still taking myself off to the toilet to have a good sob - something I thought I left behind at the NNU! We were demand feeding them as others said they're too little to be in a routine but as there are two it meant that they were feeding at different times, sleeping at different times and we had an average of 2 hours sleep a night. Plus with their reflux and screaming all day, I was starting to go mad.  I was beginning to hallucinate I was so tired. I was permanently dizzy, felt sick and on the brink of tears all day. All I could hear and see when I closed my eyes were screaming babies!

When the boys were in the NNU , all I could think about was getting them home. As long as they were home and I could shower them with love, things would be fine. How wrong I was. I needed help desperately and...we found it!

Things have changed so much, it's like having two new babies. They seem so much happier and I have managed to up my hours to an average of 5 hours sleep a night. I have complete faith that very soon, I'll be getting a lot more. Things changed as soon as we met Margarite. M has been a nanny/maternity nanny for 30 years and knows babies so ridiculously well it's unnerving.

She was recommended to us by a friend and after meeting quite a few nannys I wasnt particularly excited but as soon as she entered our home, I knew she could be the one to help us. She saw me feeding Joey (for the 12th time that day!) and immediately told me to stop. I was rocking him at the same time which was apparently all wrong. Rocking is for sleeping. Feeding must only be done with eyes open and babies must not gulp. We told her about the babies reflux issues and how uncomfortable they look. Her first words were that reflux was a myth - it doesnt exist. I reminded her that the boys had a probe down their throats for 12 hours at the hospital which measured the acid in their stomachs and it proved that they were indeed very refluxy.

M is very old school and takes no nonsense. No no no. No - is her favourite word which actually makes things confusing when she means yes but this time she really did mean no! She said that all babies get acid in their tummies when they feed - it doesnt mean they have reflux at all. She said they were uncomfortable in their tummies as we were over feeding them (i had been mistaking their hungry face for hunger when apparently it means wind or tiredness,,,and sometimes hunger). Very confusing but...ultimately she said the boys need to get into a routine, be given the correct amount of feed (which was less than the govt. recommended amount and less than any other professional would recommend) and that they need to be winded a lot more. Having been under so much pressure at the hospital to get the boys to finish their feeds so we could finally take them home meant that Matthew and I were so happy when the boys finished their bottles. Error. M said that the amounts recommended are too high and with all this surplus feed and wind building up, it was causing the boys so much pain in their guts. Medics misdiagnose this all the time as reflux - she told us to stop their medication , stop tilting their baskets and to put them on normal milk. No need for prem milk any more. She's not a nurse - nor doctor so I was really really worried about stopping their meds but in my desperate teary sleep deprived state I agreed. She talked us through a routine and the boys have been just incredible ever since.

She often sees parents with babies who have colic and says the same thing. Cut down on the feeds, encourage focussed, well paced feeding and burp before during and after the feed. Suddenly colic disappears. Reflux doesnt exist. This woman has totally changed our lives and for the last two days my babies have been so peaceful - not one painful cry.

Rather than the boys feeding every two hours, they have a set routine and I am amazed and thrilled to say that last night (day two of the routine) Joey slept from 9pm - 5am! Unbelievable! Xander managed 9pm - 3am then after a feed, 6am.

The last two days have been just so lovely and the boys are loving their new way of life. I am finally finally enjoying my two beautiful boys and back in the land of the living!

Now we just need the community nurses to get their arses in gear with soring out their Oxygen and we're away! We did another sleep study - my poor mum helped and stayed over and kept an eye on them all night making sure their figures were good meaning she didnt get a wink of sleep. We knew the results were good so we were really excited about the consultant coming back to us telling us we can turn the O2 down. once again, the nurses came back telling us the machine didnt record the data. It's been 5 weeks since the boys came home and we're still no close to getting them off O2. I was fuming and have pleaded with them to sort the situation out. All this delay means they could end up being on O2 for months longer than necessary. It's uncomfortable for them and so difficult to manage them with all the tubes. Matthew and I are so upset this is still going on and we're desperately looking for a solution - even if it means buying a machine ourselves and sorting it out privately. I dont want these tubes on the boys a second longer than necessary. Now that they're enjoying life, they deserve to be free from any reminder of the hospital. Mission of the week - get this sleep study sorted!

1 comment:

  1. Hi honey,

    I am so pleased that you have found Magrite. I suppose there is such a big transition to make from how they were cared for in the hospital, and now that they are stronger, how they are cared for at home. Do you have her full time? Can she do an overnight or two, give you some rest? You sound so desperately tired! It DOES get better Sophie, is all I can say. Once they reach the 3/4 month stage, things just seemd to plateu with mine and it was such a relief! You are so close to coming out of that hazy fog of babiiness, trust me. It sounds like you are on your way!

    Take care honey,I would love to come and see you at some point and take those little cherubs for a walk do you can have a sleep. X