We brought the boys home and immediately met with disaster! They were on liquid milk at hospital (special milk for prem babies so only available on prescription) but the hosp sent us home on the powdered version as its cheaper. Thank you NHS, The boys didnt take to the powdered milk at all and they just weren't feeding. It was so thick that we couldnt get the milk out of the teat to test the temperature so in desperation we were sticking our fingers in the milk to check it wasnt too hot..which in turn meant it wasnt sterile. All this was happening at 2am the day we brought them home. Matthew called the hospital and they said to come in and get some bigger teats. He did just that but still the milk was too thick . He then went back again (4am) to get more liquid milk. This totally ruined any routine they had and we had to go back to 2 hourly feeds. They take an hour and a half to feed...its no surprise that the next few days were a blur.
The boys were difficult feeders at hospital and they were even more difficult at home. We were so institutionalised by the hospitals strict routine of the babies finishing their feeds and we were trying so hard to do the same at home not really realising that sometimes babies just dont want to feed that much and will probably take more later. As soon as we were told that, things got a little easier. But - the boys have bad reflux and although they're on reflux meds, unless you prepare the meds properly they're pretty much ineffective.
I asked one of the nurses if we could pre prepare the meds for the day so we're not doing it just before a feed and she said yes , thats fine. Just to make it clear, we have a big bowl full of different meds which need to be syringed out and put in to different bottles for the feeds. As both boys are on different amounts, it's quite a long and complicated task so preparing them in advance would save a lot of hassle - not much but a little! So - we pre prepared the meds and the boys reflux just seemed to be getting worse. They were screaming and wriggling around after the first bit of milk. It was so upsetting to see and i consequently started to dread their feeding times. Matthew was firmer than me so did ok but I couldnt feed them if they were in pain. I lost my confidence completely and wondered if they just didnt like being home or if they just didnt like me.
Some said that the boys were just difficult feeders but I knew something wasnt right. I read the packet of meds that deals with their acid reflux and it says to give it to them immediately or within half an hour. It also says to mix it with cooled down boiled water - not boiling water which I had been doing. Thank you to the nurse who said pre preparing was ok. IT IS NOT OK!
I'm ashamed to say that before i got to the stage of reading the packet of meds, I had called the NNU to tell them what was happening and I had googled the issue and seen that lots of babies were lactose intolerant. I decided that was the issue! They said it was doubtful but to bring them in toA&E. So, we did! Just before the doctors saw them, we fed them and they fed like a dream. It was so hot in there that they were both sleep feeding (so reflux wasnt a problem..until later that night) so we sheepishly left and said we didnt need to see the doctor and apologised for wasting their time.
The hospital also didnt send the boys home on the max amount of anti reflux meds as they were meant to so that was a whole other drama trying to get in touch with them and up the dose.
So..now we've got the meds right and we've been through a million different types of teats and bottles, we're almost there.
I have my confidence back and I'm slowly managing to look after the boys. They're both attached to the O2 cannisters which I find hugely restrictive. The tubes get tangled and you have to be so careful not to trip over or pull them too hard. The boys like to pull the cannulas out of their noses which gives us heart attacks when we check on them and find them hanging out of their noses! We've resorted to letting them sleep in the living room as it's so difficult moving them in and out of their room..or any room.
We have to change the sticky bits and cannulas every week which is another traumatic event. The sticky bits are really sticky and the boys cry so much when we take them off. We then have to hold them still whilst we put new ones on and by the end , we're just exhuasted from the stress of it all.
They;re also tested every few days to check their O2 levels and they need blood tests. One of the nurses tried 3 times on xander whilst he screamed and screamed. I was close to throwing her out of my house when she said she would come back another day. Thank you for bruising my soon in three different places and leaving him snuffling for hours after you've left.
We've taken them for a few walks with their travel Oxygen. Matthew loves it but I spend a lot of the time wondering if the travel O2 is still plugged in and if we'll be back in time for their next meds!
To make things even harder, I have carpel tunnel in both my wrists. It's like someone is tugging at the nerves in my wrists. It's so painful but I just have to get on with it as I need to pick up the monkeys all day.
So..the drama continues and my boys are still being put through more pain with their blood tests and o2 cannula changes. They're home and i can keep an eye on them but I cannot wait for their O2 cannulas to come off. I want to see my babies faces and for them to be free of tubes so they can be picked up and carried around the house.
The last three months have been so full on and my life has been on hold just making sure the boys are being looked after properly, watching them fight their daily battle with the nurses and doctors. I now feel like we still have a way to go and getting two hours sleep a night has meant quite a few teary days. I dont have time to do anything but feed, change, burp, trip over O2 tubing before starting all over again. I've forgotten what its like to go for a walk, shop, see friends, sit in a cafe, have time to myself, read, take in fresh air or relax.
Matthew is back at work with awful timing of having to work extra hard and long hours. We've enlisted the help of a night nanny and have help some days but it's expensive and i'm desperate to be able to look after them myself so we dont have to spend so much on care. I'm not sure if it's physically possible but I'm trying. Our mums have been just amazing bringing food and helping, staying over to help with the nights but they cant come every night and Matthew and I sigh a very deep sigh when it's just the two of is as we know we're set for approx 2 hours sleep!
We tried to get them in a routine but they do pretty much the opposite of what they're meant to!
If anyone is reading this then I'm sorry for not replying to calls/texts - life with prem twins on O2 and meds is not easy! This blog has taken me three days to write!
I love having my boys home so much but I'm struggling with how intense looking after them is. Being so restricted with their o2 and their meds is harder than I ever could have imagined. I made a promise to the boys in the hospital that I'd give them so much love and spoil them rotten and I feel a bit like i'm failing them.
People say it will get easier - I hope so as I need some kind of respite from being exhausted and anxious. As hard as this time is and as much as I cry and get frustrated that this happened to us, I love the boys so much and will do everything I can to show them how much i care. Even if I get it wrong every now and then!
Grandmae feeding Joeby
Quick photo inbetween the cannula change - Xanders beautiful face
Joeby's chubba cheeks! He's lost his hair!
First came Xander...then came Joseph vests from Jess!
Barry taking it easy
Gibbo and sleepy Xander
Is there something on my shoulder? Bex
Feeding is a two man job! Nana Fox