It's Summer now (Peter's 6th birthday in fact) and we've been been coasting along so nicely since Easter. Louise has recovered really well from the heart op and I can hardly believe it's something we actually went through, it feels like I read it all in a book. Developmentally she's perfect...she's starting to reach out to touch the toys in her baby gym, she's smiling away and and will even hold a little conversation. When any of the other children are around she follows them with her eyes and coos to grab their attention-not that she needs to as she has well and truly placed herself at the heart of this family. All of our appointments have been routine, we're all getting a full night's sleep and life has returned to more or less normality.
Finally the long-awaited MRI day arrived. It's been niggling me that Louise's brain hasn't been looked at since Monday of Christmas week and while she's showing no signs of hydrocephalus or neurological problems nobody really knows what's going on in there. I've developed the habit of checking her fontanel while she's feeding to check for bulging, it's surprising she hasn't a bald patch there! As I've mentioned before, Louise had to have an IV anesthetic rather than sedation for the MRI because it was for two areas. I'd say that child was delighted to nod off she was so starving, they'd even put her on iv fluids as she'd been fasting so long. Dr M the cardiologist did the heart one himself so while I was waiting outside he passed me a few times and gave me a progress report and mentioned that he would do an ECG while he was there. Before leaving the house I'd tucked a book 'The Female Brain' into my bag to pass the time. John bought it for me ages ago thinking it looked interesting and I'd forgotten I had it. He was right, it is interesting and very readable. I read the chapter 'The Mommy Brain' which describes all the neurological, hormonal and physiological factors which kick in from even before conception to draw a mother to her child. Mmm...now Dawkins would say this is random chance but my own preferred take is who but a loving Father God would infuse a babies head, poop and milky vomit with pheromones to delight their Mommy?
After the two MRIs the nurse called me in while the doctor was finishing off the bits and pieces. Louise was starting to squirm a bit starting to wake up. The doctor came in then and said he was very happy with the pictures with the ECG. The only thing that showed up that they hadn't known about was a flap on the atrial septum where the large hole already is which would be removed during the operation. I asked him whether he was concerned about that and he said no. He then mentioned Louise's DW defect and that he'd now be liaising closely with the neurologist to discuss the surgery. I don't need the apt I had for him for next Monday and I'll see him now in three weeks ( my holiday is rapidly getting shorter and shorter! Now I have to come home for 2 days instead of one and if Rebecca's passport doesn't arrive soon I'll have to take another day to queue in the Passport Office) That was fine, I thanked him again and after a brief chat with the MRI team about the brain scan (no info-they're just going to send for the pictures of the prenatal MRI to compare) we headed back to the day ward to wait for this little darlin' to wake up and have a feed. We went home a few hours later and Louise spent the rest of the day snoozing and feeding. Since I'd been awake since 4am I headed to bed early giving Rebecca the dire assurance that I WAS bringing her to TKMaxx tomorrow and she WOULD be buying clothes AND shoes (she's the opposite of a shopaholic).
Next morning just as I parked the car outside TKMaxx my phone rang, it was Louise's cardiologist. I assumed he was ringing to reaffirm what he'd said the day before and he was...with an addendum. The team had just had a meeting to discuss Louise's case and they'd all agreed that she was a good candidate for the proposed surgery to reroute the blood from the superior vena cava to the pulmonary artery and now also to actually remove the septum and not just the loose flap. However what had come up in the discussion was the effect the operation would have on Louise's brain as it would increase the blood flow to it. He told me that he wants John and me to be fully aware that there is a serious possibility of neurological consequences, especially considering that her brain is already compromised. In the days following the surgery Louise may become very unwell and develop hydrocephalus triggered by the operation and need an emergency shunt so she would be taken down for more surgery. He said that he knows Louise is doing extremely well neurologically now but that might not be how it will transpire after the operation. You know the phrase my blood ran cold? now I know what it feels like-my chest, stomach and legs actually felt cold from inside. I'd never experienced that sensation before. I asked him was he talking about the possibility of death and he said no. Well after that I don't care...well of course I DO care but I'll take her in any state. The rest of the conversation was mainly me asking him questions like is this PROBABLY going to happen and he said he wouldn't say Probably, so I asked was it just POSSIBLY? No..more than possibly but that only God knows. So it's more than possibly and less than probably. I suggested that maybe third surgery might relieve the pressure and he said no, if anything it could make it worse and if the next surgery has this bad effect the third op might not be done at all. It isn't always necessary anyway. I asked if she doesn't get the heart surgery will she die? Yes, she will...Well then, there's no decision to be made, if we have to compromise her neurologically to save her that's what we'll have to cope with. I said to him 'well if we all reached our potential we'd be doing well' He said he thought we had a very good attitude and he just didn't want us to head in to surgery without our eyes fully open to the possible downside and that his job was to help these babies get to their best potential. The surgeon would be contacting us to meet us (his secretary rang me this morning so we're seeing him 7.30am in his rooms next Friday) The operation will be in about seven weeks time. Louise needs to put more weight on she's still small for surgery etc etc and so on...I said goodbye, hung up and that was the end of my composure. Rebecca had been listening to the entire conversation and after a respectful pause she said " We'll go to Lourdes."
We went into TKMaxx and she DID buy clothes AND shoes.
The rest of the day was just like the early days after Louise's first diagnosis. The tear well which has been dormant since Easter has been reactivated and I'm finding Louise's little chuckles heart wrenching because I'm wondering will this great progress just come to a standstill. I waited till I got home to contact John and fought off blurry eyes for the sake of road safety. John came home immediately-he'd been in the middle of house calls when I rang him and he couldn't understand a word I said. Thank God he's a doctor-his take was that the doctor had to place the possibilities in front of us, he's not the neurologist and a shunt is not major invasive surgery.
This morning I rang the specialist nurse so I could either meet her while I was up at today's appointment or could she ask the doctor to ring John who'd have a better medical grasp. So this afternoon John got the phone call and had a good chat with the doctor. Basically my lay understanding now of what he said to John is this...there are hardly any children in Ireland with Dandy Walker, of those there are even less with a heart defect and of those basically there are none with Louise's defect, so what they know of Dandy-Walker with tricuspid atresia is not their own clinical experience but based on knowledge of their specialities. Luckily we have a world class cardiac team on our side, all of whom have spent many years in USA, we haven't met the neurologist yet but from what I hear he's excellent. I feel a bit better now. What else can we do but trust in them, trust in God and double up our prayers?
Louise's eye appointment went well. Before I went I said to John "Now what's HE going to say? I suppose her eyes are going to fall out or something!!!!!"
They're not and they're fine.