18 May

I haven't posted for a few days as there has been much going on and I haven't been home much at all!


On Tuesday Max again came home, this time for about 6 hours and two feeds. he was very well behaved and we broke in almost all his equipment. He even had a sleep in his own bed. We weren't that keen to take him home, but we did feel like we'd taken another step in our apprenticeship. Also, Max is now on breast milk. he took the 4pm feed (at home) very well, but overnight he was terrible - he seemed to actually hate the taste. It almost got to total bottle refusal time. Most depressing for me.

Wednesday we 'roomed in', which means we stayed in the hospital in one of the overnight rooms, and Max stayed in with us. We did all feeds and medications, and all otehr cares. He was a very good boy. We didn't sleep very much, mostly because he was actually quite quiet, and I was paranoid about him stopping breathing. he hasn't apnoeaed (is there such a term?) in months, but I was still worried. So, I stayed awake an awful lot, trying to hear him breathe, and getting up constantly to check on him. Between Mark & I we managed the feeds and both of us got about 3 hours sleep - albeit in 20 minute blocks.

Thursday we stayed the whole day at the hospital and roomed in again. During the morning Mark & Max went for a walk for an hour or so (to make sure our car hadn't been stolen, among other tasks), and I had a sleep. In the afternoon, Mark went home to check on the cats and Max & I played in our room. It was a really good time. I felt really brave to leave him in his cot and go to the bathroom - Max was unwatched for about 3 minutes! That night we slept more, but Max was a bit more unsettled. Good practice. Actually he pulled his naso-gastric tube out (discovered by Mark at 3.45am), so he was taken back into the unit for repairs!

Both evenings we had visitors - other parents from the unit came in and we shared pizzas / Thai takeaway. It was actually really fun and we will miss these people very much. It was so good to actually be with people who get what we're going through. We hope that one of those boys will be heading home, too, in a week or so, and the other one is going great guns (another 'stoma' baby, he had his reversal surgery last week). So, we all hope to keep in touch in one way or another.


We also had a few nurses who weren't going to be working on Friday come in and say goodbye to Max. Actually quite emotional for all of us, but after a few very sad times recently, I hope they think of Max as their own success story.

On Friday all hung on getting a final check over from Dr Scott and waiting to see if he pronounced Max OK to go home. It was rather a long morning as the unit has suddenly gotten extremely busy. A few days ago it was almost empty in level 3 and only 2 bays operational in level 2, but today almost all beds were full, and it seemed as if every parent was in at the same time. Dr Simon had a team of professors from Sweden in to visit and showed them Max - quite fun actually. While we were waiting for Dr Scott (who seemed to be pulled every which way), we played with buddy Brock (no, they're not twins - they just have mums who dress them in the same outfit) - then had a bath and a final weigh. (He actually had lost some weight earlier this week, but seemes to have put most of it back on - he's now 4250g.)



We finally got the go-ahead, then spent time packing up, getting final instructions on medication and feeds, collecting all paperwork and drugs to take home, then a final round of goodbyes. Again, quite momentous and emotional. We have been there longer than some staff members! It will be a very strange feeling, not getting up and going in every day, not seeing all the people who have been almost family for the past six months.

And now, yes, we're home. Max is taking feeds, but very inconsistently. We are trying EBM (breast milk), but only really have enough for a few days, so we've also got a few feeds worth of Term formula as well. We'll see how we go overnight tonight, but we are sticking with the 4-hourly feeds at the moment. Hopefully he'll start to demand them much more, but we won't wake him if he sleeps through at night - we'll just gavage that feed.

It is still a bit odd, having him at home. I suppose all new parents feel that way, and it is nice to actually feel like a 'normal' family at last. We will have lots of medical follow-ups to attend over the next eight years (yes, eight! can you believe it!), and this starts with our outreach nurse's first visit on Monday. (I have already been told it's OK if I answer the door in my pyjamas!) We are booked in to return to the unit for his next set of immunisations (just to make sure he doesn't react badly), so we haven't entirely disappeared from the 'family' of the NNU, but it sure feels odd not being around them.

Welcome home Max.