Saturday, 26 June 2010

Thursday, 24 June 2010

Goodbye Mr Oxygen

We have hopefully said goodbye to the oxygen. Joe hasn't needed at all for around a week now, not even when feeding or at night. The freedom of not being attached to the saturation monitor or lugging oxygen equipment around is wonderful. At first, I was so excited and happy to have the babies home that a bit of extra effort involved with the oxygen was a small price worth paying, but it quickly became an absolute pain and put me off going out anywhere. There is always a chance that they will take a step backwards when they get their first illnesses so the oxygen tanks will be left here for a while as a back-up if needed.

Both babies were seen at the hospital on Tuesday. I was expecting a big appointment with a consultant but we only saw a nurse who weighed the babies, said how great they are looking and sent us on our way. Joe is now 8lbs 5oz and Harry is 8lbs 14oz. I think there is a discrepancy in the scales somewhere as the end of last week there was only 2oz seperating them.

Harry has been taken off three of the drugs he was which is nice. Two diuretics and a sodium supplement have stopped. The drugs are another of those things I was a bit blase about at first. I thought it would be a small inconvenience but after a few days of doing it, it becomes a really big nuisance and is actually quite a big responsibility because of the dire consequences of getting it wrong. Harry is still taking ranitidine, domperidone gaviscon and sytron, and Joe is still taking domperidone, gaviscon and sytron.

On Monday we have our cardiologist appointment where I am expecting both babies to have heart scans to check the status of their murmors. I'm not anticipating any problems showing up but the actual appointment will probably be quite stressful, trying to keep both babies happy and settled is nearly impossible when I only have one pair of hands.

This week I have stumbled across a couple of other micro-premie blogs, of babies also born at 23/24 weeks. They really make me realise how incredibly lucky we have been so far, but also how far we still have to go. The chances that one or both babies has a degree of cerebral palsy is incredibly high and I am constantly looking for signs and trying to prepare myself for when/if they are diagnosed. The trouble is no-one has really told me what to look for, and we seem to have much less early intervention than the babies in, for example, America, who from the blogs I have read are followed much more intensively than we have been. I mentioned to the nurse who visited us this morning that Harry handles very stiffly - when you sit him up his hips, legs and back seem to go poker straight and it's very difficult to get him to sit in a natural 'baby' position for burping etc. She didn't seem concerned and said he probably is just 'windy'. I hope she's right and there isn't something I should be doing to help his muscles relax.

The babies continue to sleep all night, taking their last feed at around nine, give or take an hour, and sleeping through til around 6 when one baby starts stirring so I wake them both.

Monday, 21 June 2010

Testing sending a blog from my phone.
From Sarah, using BlackBerry® from Orange

Thursday, 17 June 2010

20 weeks, I think.

So today I think the babies are 20 weeks old. To be honest I have lost count since they came home, but they came out of hospital at 17 weeks old, and that was three weeks ago, so with my basic maths skills that makes a total of 20, right?

The hearing tests last week didn't go wonderfully well. Joe has good hearing in only his left ear, and a poor response in his right ear. Harry has a poor response in both ears. They aren't concerned about Joe as good hearing in one ear is adequate for him to be able to pick up speech, but Harry will be having his hearing re-tested in a couple of weeks time. The babies were absolute stars during the tests. It took forever, especially Harry's and they were both starving and fed up of being poked around by the end of it all but they hardly made a fuss at all.

They are both feeding and sleeping well still. They go around 8 hours at night, sometimes longer. Last night they had their last feed at 8, and I woke them this morning at 5 when I got up. They are just so fabulous and hardly ever cry.

We have bought Joe a pillow to help with his head shape from No idea if it works, but it can't do any harm to try and my instinct is that it's a waste of money but he looks cosy enough on it.

Both babies were weighed today and Joe is 8lbs 4oz and Harry is 8lb 6oz. At one point there was nearly a pound seperating them but Joe is catching up fast. They drink about the same amounts of milk as each other, but Harry is much, much sicker so I think that is why his weight gain is slower.

Today was our first experience of going along to a twins group. Wow! What can I say? If I was under any illusions of how easy toddler twins will be, I have since changed my mind. They were so full-on and active and boy-oh-boy they were a violent bunch. Pushing, hitting, and biting each other seemed par for the course for all the siblings there. My cute little boys will never be like that, will they? ;)

Wednesday, 9 June 2010

Millie and Joe

Millie holding Joe. More pics coming up this evening.

Settling in at home

The babies have been home for two whole weeks now. The time is flying by. Apologies for the lack of blog updates but at first I was undecided whether I should carry on updating (not sure how many people will read it now the babies are home) but have decided it's a nice way to record memories and pictures and will be nice for the twins to read when they are older.

Both Joe and Harry are such good babies. One advantage of NICU is that they send the babies home in a fabulous routine. At the moment they feed 3.5 - 4 hourly through the day and sleep for around 6 hours at night. In fact, last night they fed at 10.30pm, and I had to wake them this morning at 6 as we had a hospital appointment at 7. So far, all they really do is feed and sleep. We have had hardly an occassions where they have cried properly and no times as yet when they have been inconsolable or howled together at the same time.

On Monday we (me, Joe and Harry) went to a support group for premature babies. I was surprised there weren't more parents and children there, but it was nice that it was a small group and I met two other children who are now three and a half but were born at around 25/26 weeks, and they were absolutely lovely - running around and chatting and to the untrained eye completely average little boys. The group only meets once a month for an hour which is maybe why it isn't very popular. It isn't really frequent enough or long enough to form any sort of friendship with the other people there but we will go along again next month.

This morning Joe had his eyes tested for the final time for ROP. He has now been discharged and won't be seen again until he is a year old.

Joe came out of hospital with a feeding tube as he was getting quite tired sucking on his bottle sometimes in hospital, but I am pleased to say we only needed to use it three times in the first week and since then he pulled it out and hasn't needed it again. Both babies are now having 115ml per feed and tolerating it well, although we have had a few episodes of sickiness, especially in the carseats but that could be my driving that's upsetting them!

Tomorrow is a big day for the babies as they are having their proper hearing tests at the audiology clinic. I know they both have some degree of hearing because they startle at loud noises and respond to voices, I just hope that I am told tomorrow it is all normal.

Last week Joe weighed 7lbs 3oz and Harry was 7lbs 13oz.

It's so wonderful to have Joe and Harry home, as part of our family, properly. My heart tells me that they are going to be fine, I can just tell. They are beautiful, brave, amazing, little people and no matter what the future holds for them I will always be so proud of them for fighting so hard to stay with us.