Happy One Month! What a month it has been. Your arrival and this first month was definitely not how I imagined motherhood to be. No one imagines they'll spend the first month of their babies life in NICU.
But what a fighter you are, those first few weeks you were so strong, despite the war raging in your little body. But oh, those first few weeks were so hard. So so so hard. To hear you make one little squawk after birth and then fall silent. To see you squint and open your eyes just that one time, and then to watch your little body stop moving and eventually become non-responsive. To have a machine breathe for you, with your little face and body covered in tubes and needles and wires. That time the vent got blocked and you turned a dusky shade of blue and needed to be resuscitated. Oh my sweet little boy, in that very first week I felt like I'd never loved so much and feared for everything all in the same go.
Your diagnosis is a tricky one. So rare, so full of unknowns. I've really struggled with it. But you, what a little trooper. Once we had an idea what was going on and were able to give you meds (which came with a severe warning that you may not respond to them) you came around like a champ. Since then we've been celebrating every little victory you've given us. Every tiny one.
The day you opened your eyes for the first time I bawled - big great sobs of relief - your eyes are so beautiful! So so beautiful. When I was able to hold you I cried. I cried the day your vent came out, and the very same day you took yourself off CPAP and started self ventilating - high five for breathing by yourself!! That was a good day. So was the day you cried for the first time. The day you started taking the bottle, and then the breast. The day we were able to take your last cannula out. And your ng tube. When you moved from intensive care to special care. When we were took off the ecg cables, and I could cuddle you without being tethered to a machine. I've cried so many happy tears at each tiny win you've made. And oh baby, you've made so many these last two weeks. You're a completely different baby.
Daddy and I have also been celebrating your general baby-ness. Your beautifully chubby thighs, and funny little poses. Your attempts to find your thumb. We laugh so hard at the bottom toots you make, and the pooping. Oh man, you're a champion pooper. Youre also a comedian with the poop. Waiting until Daddy has just changed your nappy, just fixing it up and you poop. Not just once, but twice. Your timing is impeccable, and we laughed so so hard. You like to be sung to, often quieting down for a moment to listen before you resume crying. You're lyig next to me as I type this, and oh, you are snoring your little baby snores.
You also often get hiccups and goodness, do you hate them. With a passion, they always always upset you. It's funny to see (less funny when it makes you vomit). And oh, your little hulk rages. You go from zero to dialled up past 11 furious in the space of two seconds. I think it's something the NICU has trained you into, and it's hard to tell your cues. We'll get better at it though. Sometimes I can head it off with the dummy, or some singing and walking. Sometimes you just rage, with epic screaming (Kui calls it singing. Kui has never dealt with your rages though, I doubt she would call it singing if she had!). You'll often hit me in the face with a flailing limb or headbutt me as I'm trying to offer quiet reassurance. But even in your rages I want to high five you. There was a time when you were limp and silent, so baby, if you want to rage you go right ahead.
I know we have an uphill battle ahead, but you are so loved. Our little family will get through it. I can't even explain how much love there is for you. We have a village around us. We keep hearing stories about how friends of friends are praying for you. Church groups all over the world. And friends who aren't into prayer, I've been told, are sending you visualisations and strength. It's been revitalising, to know we have the support in our little corner.
The best news is soon we (hopefully!) will get to take you home. That first horrid week taking you home was an unlikely possibility, so to be taking your sweet self out of the hospital, oh little man. We're very excited. I can't wait.
Arohanui my little man, more than you know.