A Week To Remember

March 27th 2010

The morning after Louise was born I waited to be discharged from hospital and for John to come up and bring me over to the Children's Hospital. Another beautiful sunny morning.  I was expecting there to be a flurry of activity with medical tests, scans etc but we had actually missed all the excitement as they'd all been done the night before when she arrived in the hospital. As far as I can gather she had an echo-cardiograph, renal ultrasound, ecg and I don't know what else.  The nurses showed us her little room.  (Now that I'm writing I've just remembered she wasn't there, I must ask John does he know where she was ) A few minutes later a nurse brought her along to us and we were  reunited with a little tear.  She had a feeding tube up her nose and still had the lines in and also a blood oxygen saturation monitor attached to her little foot.  Bit by bit over the next few days these were all removed except for the monitor.

John went home for a while to attend to the children and shortly after he left, Louise's cardiologist called in.  He told me he was very pleased with the echo-cardiograph and that because of that and her good blood saturation levels she wouldn't need the heart shunt he'd mentioned might be a possibility before she was born.  This means that the other 3 operations will now be more effective and will last for a very very long time.  He had warned us before that Louise would possibly need a heart transplant from the age of about 15 but now it'll be much older.  My thoughts on this are although the idea of finding a heart for her is frightening as I know hearts aren't easy to come by, medicine never goes backwards, only forwards.  Hopefully by the time Louise is looking at that option, it'll be much simpler.  The nurse told us later that that doctor will never hide bad news from you so if he says something good, we can believe it.

Anyway, the doctor thinks Louise will go slightly downhill at about 3 weeks of age as her lungs mature a bit.  We've to bring her back then and I'm not sure will she get medication then, but surgery is still on track for about 5 weeks of age to place a band on the pulmonary artery to prevent excess pressure. This will be followed at 6 months by a Fontan operation and at 2 years the procedure to reroute the blood flow will be completed in a Glenn operation, during which they will also close up the huge hole.  This hole is actually crucial at the moment as it's keeping the blood flowing. I'm not looking up the internet to see what these operations entail...it's not necessary for me to know what the operations look like or what the surgeons will do.  All I need to do is trust and believe that these highly qualified doctors know what they're doing, to be there when Louise goes to surgery and to be there when she returns with dressings on the wounds. And to believe that ultimately, God is there looking after her (and us).  I'd go off my rocker if I start thinking of the procedures. Luckily, a brain shunt isn't indicated at the moment as there's no excess fluid around the brain and her head circumference is normal.  John has to measure it 3 times a week to monitor it.  The neurologist is arranging an appointment for another MRI to get a clear picture.

On Saturday John brought the three younger children up to meet Louise.  I couldn't believe Peter when I saw him.  Only a few days beforehand, he was my baby..now this huge child walked into the room.  I think that always happens when you have a new baby.  They were thrilled with their baby sister, in particular Laura, who was like a little Mammy.  Isabelle couldn't stop smiling and Peter was a bit torn between Louise and the Nintendo I let him play for a while.  When Louise was settled we brought them down to the hospital canteen for lunch..Thank God, it's a great canteen with proper food at what appears to be not for profit prices.  I was visualising having to live on pre-packed sandwiches! Next morning John brought them up again for Mass in the hospital as the time was convenient.  The only little cry I'd had since Louise was born was coming down from Communion..I just thought of all that lies ahead of us, it's not going to be easy.  Then instead I focused on all the good things and how Louise could have been so much worse by now and thanked God for answering our prayers.

The rest of the day and the weekend passed slowly.  I was sleeping in beside Louise in a pull down bed (like a ferry).  She's a great little baby, really undemanding and placid.  I soon got used to her alarm going off every time she fussed or every time I forgot about it while I was feeding or changing her and jerked it.  All my well laid plans about how to entertain myself fell a bit flat..I couldn't muster up any interest in the books I'd brought in and the Nintendo games I'd kept since Christmas (Professor Leyton and Cradle of Rome) didn't really do the trick either, even though at home I have to use willpower with them! I prayed and said the Rosary, dipped in and out of the newspaper and played a few games but the time went by so slowly.  Next time I'm going to bring in a little radio, then the chat shows will occupy the mornings and I'll bring in the portable dvd player and catch up on all the classic movies I've always promised myself I'll watch 'someday' .  The other thing I can do is chat to the other mothers..I've  already spent quite a while chatting to some of them and trying to keep up their spirits.  There are  a lot of parents in there suffering with distress, worry, loss of dreams, changed life plans and so on.  Maybe a consoling or encouraging word from a stranger will help some of them...I hope so.

On Sunday evening the 2 older girls called in to see Louise along with John's parents.  They'd been to a wedding in London (which we were sorry to have missed) and were en route from the airport.  I was amused to see them coming in as suddenly they were like two little women (14 in June and 12).  Of course, Louise captured their hearts at once!  It was quite late so they only stayed a little while.

Monday was like a merry-go-round, a constant flow of registrars, consultants, blood tests, more consultants, some students, registrars again and then at the hint of being allowed home, a flurry of phone calls and consultations something like trying to negotiate world peace until a final phonecall to the cardiologist gave us the ok!!!  I phoned John to come up as quickly as he could before anyone changed their mind.  I just wanted to get home, get into my own bed, get Louise settled in the family and established with breastfeeding and get fit myself before our next hospital stay.

We went home armed with telephone numbers, appointments, instructions and good wishes.  We've to keep an eye out for changes in the baby's  breathing and any skin clamminess.  Also, Louise has a birthmark on her face which includes her eye so we've to watch out for changes to it which affect the eyelid as if her eye closes for a few days it could affect her vision.  The mark could be one of three things, two of which will fade by themselves and the third..port wine stain can be removed by laser later on.  The dermatologist was amused when I said I thought it was endearing.

Well we've been home a few days now and so far Louise is the perfect baby.  Everyone loves her..in fact to the point where I was considering getting a court order to gain access to my child!!  If I wasn't breastfeeding I probably wouldn't see her at all!  So far no setbacks or glitches.  We're still praying constantly and still request prayers from anyone who's willing to send some her way.  I'm sure her progress to date is 100% thanks to all the prayers she's been the subject of.