Monday, 11 March 2013

Settling in

...and then it was morning.

Kane brought our elder two girls in, dressed in brand new dresses, with presents in hand for their new sister.  A last little check and ok from the doctor and I was let loose with my hospital tags still on, on day release and due to report in that evening to stay again overnight. 

We drove in to the Women's and started the next phase of the new plan. 
The staff were amazing. They'd put a beautiful name tag up on Jacinta's crib, hand-drawn by one of the nurses. They eagerly accepted my EBM and were overjoyed when I told them I didn't want them supplementing with formula, but would be supplying all my own milk. I was gobsmacked (in a good way) when they asked me to number each expression so that they could give them in order (since breast milk changes each time to ensure your baby gets what he/she needs that day - especially in the first few days). 

When I think back to my mother's story of when I was born, I was jaundiced and taken to the special care nursery to be put under lights. My mother specifically asked to be woken overnight if I woke up needing a feed, so that she could feed me, but repeatedly found that they didn't and I had been fed formula instead which made her so angry. Then she had to insist on staying in hospital a couple more days after I got out of the nursery so she could have time to get to know me before she got home.
My experience was soooo different. There were several times when I wished she was still around so I could tell her what they were doing and how much they were getting it right! 

As soon as we walked up the hallway and got to the door, we ran into a doctor called Carl who had briefed Kane the night before. He briefed us again before we walked in and began the ritual hand washing, which would become second nature. We entered the room and were briefed by Romi, the nurse looking after Jacinta that day. In intensive care they have one baby per nurse most of the time and they really care about their baby. It's not just going through the motions, they get to know what they like and how they behave. 

For that first day, Jacinta didn't open her eyes at all while we were there. She was in her crib which was all enclosed, wires everywhere and you could barely see her face with everything she had on. We didn't know what we were allowed to do so assumed we couldn't do anything. When she needed a nappy change and the nurse asked if I'd like to do it I nearly fell off my chair and burst into tears! (There would be a lot more of the actual bursting into tears over the next week in particular - hormones!) Any time I was able to feel like her Mum and not just a visitor it was like a precious gift. 

Then the Care Manager came and showed us round and got me expressing equipment etc, then the Social Worker came over and asked how I was "feeling, no really...". What I found out over the next couple of days was that it's normal to experience a sense of loss, for the child you thought you had, and to let yourself grieve.....except I'm afraid I didn't fit the mould. Hardly unusual, I rarely do. 
I had nothing to grieve. My daughter was here and she was going to be fine. 

Maybe there was a small amount of loss for the relatively chilled-out time I was planning to have, (first-world problem!), but I never had one dream or aspiration for Jacinta that I have had to let go. Yes, I am quite particular about not having my own dreams for my children but letting them carve out their own life completely, but as well as that, if all goes according to plan, there's nothing to let go of. No reason why my daughter can't have the same opportunities that others her age have. Besides, we had too much to do.

No time for reflecting on what could have been - even though Who magazine chose that week to do a special on celebrity babies! (And I do confess to fleetingly thinking just once or twice on seeing happily families of five, "how come they get to have three normal ones?!", because however you look at it, Down syndrome is not in itself normal. If our Jacinta could have arrived in a body which had no slack muscle tone, major heart defect or developmental delays, I would certainly have chosen that body for her. As it is, that's what we're going for, but it's going to be work!!)

And we got settled in, in as much as you can. For the first few days we juggled the daughters, who quickly became known in the unit for their dresses. In the nurses' handover after every shift they went over who everyone in the family was and how Emilie would do a spin for the nurse in her daily dress (being just after Christmas the girls were doing well for dresses), how Leia was nearly five, how they were very beautiful etc then about Jacinta, how cute she was and how much they wanted to kidnap her and a little bit about her stats and treatment regime.

I exaggerate only slightly....

They really did go to great lengths to make us feel loved and valued, which made the whole thing so much more bearable. They never once got upset with us despite our curious daughters visiting other babies' families unannounced or playing in the curtains and smacking their heads on the cupboard because they couldn't see where they were going.

While they did all this we attempted to get our heads around everything.

There were the white blood cells, which were multiplying in a way they shouldn't - new ones mixed in that shouldn't be there. If they'd mentioned that this is called transient leukaemia I think we would have freaked out so I'm glad they didn't! Transient is the operative word. That one cleared up in the first 48 hours.

Then there were the platelets. These are the clotting bits of the blood. Jacinta's levels were low - about 20% of the lowest normal level. They had to transfuse her with donor platelets in the first couple of days. This was another thing that would sort itself out in time. How much time? That was up to Jacinta.

Next was the respiration (breathing). This was one of the reasons she had to come to the Women's. She was on a machine called a CPAP which is a machine that provides pressure to help puff out the lungs, like giving help on the first puff of blowing up a balloon - and wouldn't that be nice when you're running late setting up for your child's birthday party. Many a head spin could be avoided! As well as this she was on oxygen support. This was expected to sort itself out in time too. These transient things are all reasonably common in children with Down syndrome.

There was the heart too. Carl had confirmed there was a heart defect. We were waiting on the Cardiologist from the Children's Hospital to come and look again to make sure, but there was definitely a hole in the heart. The extra valve that normally closes over soon after birth was still flapping open also, but this was expected to close in the first few weeks.

So much information to be keeping track of, it was a bit overwhelming and frankly, half the times we were briefed I picked up on key words and whether those things were good or bad and said 'uh-huh' in a slightly blurry state. Very glad there wasn't an exam at the end!

So Jacinta had wires galore. A hat on her head holding the tubes (prongs) going into her nose for the CPAP, three electrodes on her chest measuring her heart rate and respiratory rate and one lot of blood saturation. Then there was a cool sensor on her foot or hand (depending where they put it) which shone a red light and could magically tell the percentage of oxygen in her blood. Then there was the intravenous line which they had put through her umbilical cord, called an umbiline. With all these things she couldn't come out for cuddles, so she stayed in her box with the hand windows.

We did the ritual cleansing of the hands upon entering and were very excited to hear that we could put antibacterial gel on our hands and actually touch her! The first day was spent getting my head around expressing and where to put it and where to sit and who to talk to and where the toilets are and which chairs move without warning when the children stand on them and which don't...and all of a sudden it was four o'clock and time to go back to hospital. I'd been SMSing one of my sisters and alluded to the fact that there was more to the story than they'd been told so far - which was no big news to my siblings since they'd been sitting around the table at a birthday gathering the previous evening, discussing the situation and the fact that there was no attributable cause for this intensive care business and as usual, I was keeping my cards close to my chest. (They know me well.....)

So we had arranged for her to come over to my hospital that evening and have a cuppa and a chat, which I was really looking forward to, but I had to spill the beans first. So I wrote a lengthy email telling the basic story - including the full account of the previous evening and very importantly the bit about Kristen and the solutions she had found and what we were planning to do. I was told later that they had all read the email within about 15 mins of my sending it, due to some very fast phone calls from one sibling to another. Their responses were as I would have expected. Awesome. Thanks for the info and very keen to meet Jacinta as soon as it suits. I love my family!

So my sister came over for a cuppa and brought Tim Tams - which despite the unfortunate use of palm oil (which has been brought to my attention since Jacinta was born) are the perfect accompaniment to a cup of tea, particularly in trying times. We went up to the cafeteria to get a cup of tea, which we probably could have done just as effectively, I realised later, had we gone to the little tea room just up the hall. Ah well. As is traditional we kept talking til well after visiting hours were over and sort of snuck out half an hour later with life and everything squared away. I don't think anyone would have got grumpy though. It was a little like someone had died, the way I was tiptoed around. I got out my old Red Dwarf book that I'd packed for my lengthy labour which didn't happen, read a bit and conked out...

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