We arrived at hospital this morning around 9.30, to hear that Sam had had a really rough night - was grumpy and irritable and hard to settle for 6 hours. They weren't sure why but his poor nurse had tried everything to settle him. His heamoglobin count had dropped significantly, which they felt was a combination of his heart/breathing problems so they had given him a blood transfusion.
As he'd been so unsettled, Audrey (his nurse for today) felt it was better to wait until he awoke before doing his routine of wash/care/weigh and a cuddle. Normally we do this by the clock, but today we waited until he awoke so he could rest and recover from his rough night. Whenever he is upset all his vitals go very high (same for us all!), but with his complex condition we are trying to keep him as settled as can be. So about 11.30 he stirred and we washed him, weighed him (he's now about 3.450 kgs) and then he was to have a cuddle with me. Well he wasn't going to play ball and wriggled and grizzled for the duration, which wasn't much fun for either of us! I tried him in various positions, but due to his lines it was just plain hard work. After about 30 mins I gave up and Audrey put him back to bed - and he was silent and sleeping in around 2 mins! So that was a bit frustrating, but we'll try again tomorrow.
We had hoped to meet the cardiac consultant and the gastroenterologist, but they had both been in around 8am, so we just had their notes to decipher (no small feat!). The cardiac team confirmed that Samuel needs a heart procedure to clamp the ductus valve. It's not 'open heart surgery' as the valve is at the top of the heart and the 4 chambers don't need to be disturbed, but is still a 2 hour surgery. We await a time/date for this as it seems a lot of the specialists are in Darwin at a conference. Hopefully tomorrow we will know more about timing for this. Until this procedure happens, and to aid his breathing in the meantime, they had to alter Samuel's fluid intake and add in a diuretic, to try and 'dry him up', which means to lesson the fluid and blood circulating through his lungs, to improve his breathing. This normally is a relatively easy alteration in a healthy baby, but there is a fine balancing act as they monitor his fluid levels to ensure his kidneys don't start to suffer. After only about 6 hours on this diuretic his creatinin levels had started to creep up, so they will be keeping a watchful eye on this and any alterations to his fluids are cleared by the renal team first. He weiged 3.7kg today and should be back to his birthweight of 3.4, so they're prepared to lose 300gms in fluids from the diuretics which should make a big difference to his lungs.
The Urologist popped in and we talked through the procedure that is needed for his urine output. Currently he is cathertarised, but it is not a long term solution as his bags will need changing regularly and the risk of infection is high. The Dr would prefer a procedure called a vesicostomy, where they cut a hole directly into his bladder so his urine just constantly drains out into his nappy. He would prefer to do this procedure a day or 2 either side of his cardiac op, as it would put Sam through less trauma as they could use some of the same intubation lines, rather than having to insert new ones for each op.
The gastroenterologist would like to try him on breast milk in the coming days - 1 ml every 4 hours initially, to see where it ends up. I've been pushing ever since his birth to try him on some as it just makes sense to me that we need to try to see if his gut has any activity or not and how can you tell if you don't try? I have suggested it a couple of times, but it seems that now the time is nearly here. His stoma is still discharging a lot of stomach juices/meconium and they are pleased that it seems the bile (that was coming up through a tube in his mouth) is going down through his stomach. So potentially he does have some minor peristaltic activity they think.... initially they thought he had none. I'm trying to not hang my hopes on this, but it's so hard to not!
When Sam was about 3 days old we met with a Dr of genetics. After confirming that Francis & I weren't cousins (!), it was very interesting talking through his condition. It seems that both Francis and I have the same faulty recessive gene - the MMIHS condition is so rare the gene hasn't been identified, but this is what the common thinking is. It seems we have a 1 in 4 chance of our offspring having this condition. Wow - we are so very thankful for our 2 wonderful daughters and for their health and the joy they bring to our lives... and for Samuel and the joy he brings us even now, whilst he holds our hand and we sit with him.
We asked today for clarification on the plan for his treatment, due to it being so complex. They said the heart procedure is now top of the list for treatment, which will in turn hopefully sort out all his breathing issues and mean he can come off diuretics which will help his kidneys remain stable. Then he can hopefully come off CPAP (oxygen support), and the next priority is sorting out his urine output (bladder op), then we will try him on breastmilk to see how he responds.
I have been finding evenings quite tough - the hospital is a constant noise of bells and beepers and human activity, the girls are a constant babble after school til bedtime... then they go to bed and the silence is lovely ... then the tiredness and emotion of the day catches up with me and the tears start - It feels so bad not being able to be with Samuel 24-7 and not being able to help him even when there, and it feels like our family is incomplete now when we are at home and he is not. But it is good to have the evenings to 're-group' and gain strength in the quiet.
Time to leave my ramblings for my nice warm electic blanket in bed. Sleep well and thanks everyone for your thoughts and prayers.