Tama's arrival into the world was fraught and stressful and probably the hardest birth that we've had. That is saying something after the two days we laboured to get Kieran here and the three days it took to deliver Saskia knowing that she had already died.
It started a week before he arrived when I was having a few CTG's because we were concerned about possible decreased movement. In the end we decided to go for a scan which started a cascade of crap raining down on us which we are still dealing with now. The scan was to do a biophysical profile to make sure the wee babe was basically ok and healthy and to figure if the movement issues were a figment of my paranoia and all was a go for a normal birth after 2 previous Caesars.
Let me just say our Radiologist and his team (aka 'The Ladies') are amazing and we love them to bits... if Scott's middle name wasn't the name of a race horse we would have given it serious consideration as a name for the baby. And we are so lucky that they care for us extra especially well knowing our history and just generally knowing us. And that is why they swung into full alert mode when an anomaly was found in the baby's brain. I said to Scott- "you know I'm going to go home and Google this so you need to give me all the information I need to do so properly" and he did. Meanwhile his staff were getting a hold of our midwife to find out how she wanted to proceed. After the scan we were ushered into the 'bad news' room to await further instructions. The instructions were do not pass go, head immediately home, make arrangements and pack your bags. So we went and did our supermarket shopping- that's not to say we were being cavalier just that we knew nothing moves that fast in the medical world, that the cupboards were bare, and if need be we could abandon the shopping trolley.
We were of course right. Our midwife contacted Maternal Fetal Medicine at Auckland Hospital and they had no Dr's on that day they had scrambled to try and get us in but hadn't managed it so we could wait. There seemed to be some contradiction in their actions and so of course we spent the weekend believing that they had wanted to see us urgently and wondering what might happen because they didn't- it was possibly the worst two days ever.
We also spent it intimately involved with the internet. Ventriculomegarly- means that one or more brain ventricles are increased in size due to a build up of fluid. A measurement above 10mm and below 15mm is mild and anything above is severe. We were on the border line with both the lateral ventricles being 15mm and the third vent also mildly enlarged. When someone says there is a problem with your babys brain and words are bandied about like Hydrocephalus and Agenesis of the Corpus Callosum- you tend to freak out a little, and freak out we did. On Monday we got our appointment for the MFM for Wednesday!!! We totally didn't understand why on Friday everyone was in freak out mode but we weren't getting in till Wednesday- we were still in freak out mode.
Wednesday we went, they scanned again, and confirmed the original diagnosis and measurements. They talked us through a bunch of stuff and said that though it needed to go to the 'panel' they thought we would be fine to go into labour and deliver normally at our local hospital provided that happened before 41 weeks (I was almost 39 weeks).
So it was with much surprise that we went for a regular appointment with the OB at our regular clinic the very next day and she said we were scheduled for a C-section the very next morning. She showed us the letter that the panel had emailed through and they had found that due to the possible decrease in movement that I had noted and past obstetric history that an 'immediate' C-section was the best option. We also read in the letter that our baby was to be a boy ruining the much anticipated surprise that we had planned for the birth.
After some robust discussion we accepted that we didn't have a choice because essentially we knew that if we waited and something went wrong with our boy in that time we'd have one hell of a time forgiving ourselves. So we went home, sorted childcare (Thank-you Carolann, Kindy, and Gregg and Linda), packed and thought about names.
The next day dawned early for us and we departed for the hospital as the sun was rising. Got sorted and settled in to wait while some other ladies had their own emergency births.
We finally headed for theatre around 11. We had a nice enough surgeon, a cool Paed, some lovely midwives including our own and a fantastic theatre nurse who more than made up for the humour vacuum that was our anaesthetist. The plan was to pass the baby all sticky and bloody up to me as soon as he was born. Things never go to plan. 11:31 they yanked him out, handed him over to midwives and paed who wiped him down and checked him out.... there never was any intention to get him straight to me because the thing that was never said was that they had no idea if the Ventriculomegaly was isolated or if there might be other complications. As it was the baby was having issues with his breathing and temperature, unrelated to his brain, and so after an all too brief cuddle he and his very stressed Daddy were spirited away to the NICU.
And he got his first visitor- Raewyn is an old friend and she works at the Maternity Reception so she knew we'd been wheeled back from the NICU and was excited as to come meet the boy.
At 4:30 that afternoon I was out of bed and me and Mr no-name were wheeled around to Radiology where the idiot technician took pretty pictures of his head. Fortunately despite the whole morning of major surgery and stress I was onto it and got her to give me the measurements and details (including a cyst that hadn't been noted before). I say fortunately because over the weekend somebody equally stupid reviewed the scans and passed their opinion onto Tammy, our amazing hospital Paed. She came while I was off showering and told Les, who had the baby, that everything looked normal and all was good. At which point I re-entered the room, got the news and told her it bloody well wasn't and gave her the details that I had from the scan. At which point she genuinely asked what my medical training was. :-) And I told her I was simply an educated mother who knew how to advocate for her children. She apologised for the mistake and said she'd check it out. Which she did, came back with the actual results, and set in place all that we needed for our follow-up. And in the meantime I had a wee cry to my midwife that I had to work with idiots! :-)
By Monday we were done with the hospital, hearing checks were done and all clear from the paed to leave- we did and thank-goodness because the most acute mothers get the best midwives and the others get the painfully annoying bottom of the barrel ladies so we were well ready to get away.
By this point the little guy who'd gone by various monikers over the past 4 days, as we tried them for size and fit, was finally ready to be introduced to the world as Tama Felix Clark Stockley.
We had a follow up at the hospital when T was about six weeks which resulted in him going to Starship the very next day for surgery to repair an inguinal hernia. Possibly one of the most stressful days of my parenting life- not feeding your six week old for 10+ hours, handing him off to strangers, and knowing he's going under a General Anaesthetic are all enough on their own but when combined are heart rending, that said there are parents out there with truly sick babies and I appreciate that we are so lucky.
Waitakere Paediatrics recommended that Tama be followed up again at 3 months- but the Australian medical system is slow and unwieldy so it was closer to 5 before he was scanned and seen. His head is increasing at a rate greater than the rest of him and measures in the 97th centile now so they have put him on the waiting list for an MRI (which he has to have under a General) as a 'semi-urgent' case. That translates in the Australian system as May of next year- it's far from ideal as he will be almost a year old- I can't help thinking that had we still been in NZ it would already be done, but of course that can't be helped.
Ninety percent of babies born with ventriculomegaly go on to be diagnosed with what is called “Isolated Mild Ventriculomegaly” and most of them have no issues. Some of them have developmental issues with their learning and cognitive function. Ten percent of babies born with ventriculomegaly go on to have a more serious case and a wider range of issues. It's possible we won't know which of these Tama is until he is into his second her third year of formal learning- that's a lot of uncertainty and sometimes in weighs heavily on our minds.
But for the most part we just enjoy this incredibly sweet and adorable little being who blesses our lives everyday with the sweetest smiles and laughter. He's laying sleeping in my arms right now and every so often he cracks the cutest little smile- even in his sleep, especially in his sleep, he is a dream baby.
♥
