I wanted to write an update on here, mainly because I have so many lovely people behind me and I physically can’t reply to everyone, or possibly keep people updated properly. Which is something I hate.
Daisy is three weeks old tomorrow. And I can’t quite get my head around the fact that we have a three week-old daughter who has yet to feel the sun on her skin. Or breathe in fresh air that smells like grass. Or to know what home is.
I want her home so very much. I can’t stand it.
I am at that point now, where the SCBU feels like a second home to me. I walk around. I know where things are kept. I no longer feel quite so shy, intimated, or nervous.
Her feeds are 2:30am, 5:30am, 8:30am, 11:30am, 2:30pm, 5:30pm, 8:30pm, 11:30pm. I know what to do. I get her milk, measured to 76ml. I get it warming. I get her bottle from her steriliser, sat on a row with others, on top of a big unit that houses medical equipment. I get the syringe and PH strips ready. I grab a pair of size medium gloves from the dispenser on the wall and I squeeze my hands in. I get her suction tube ready, I mark where 10cm is between my thumb and finger. I turn on the suction and I carefully clear her tube. Twice. I clean it with sterile water. And get it prepared for next time. I change her nappy, I get her awake. I love her and I chat to her.
The milk warmer makes a jingle to say it’s done, and I grab her milk, wondering what day I expressed it, and what time it might have been. I fill her bottle and I smile as she gives it her best go with gusto. I squeeze the bottle, a special bottle for cleft babies, every third suckle, to help her feed. And then, after ten minutes, or when she tires, I stop, and burp her. And then I begin to give her the rest by her feeding tube. I note the PH first, to check the tube is in her stomach and not her lungs. And I feed her using a 10ml syringe, adding up how much she takes as I go, so I know how much she had in her bottle. She finishes, and I make a note on her chart of how much she took via both bottle and tube, and I smile when it’s the most she’s ever taken by mouth.
And then I hold her. And I love her. And I watch her. And I smell her head. And stroke her hair. And I sometimes close my eyes and try and blur out the sounds of machines and beeps and pretend we’re at home.
And then I’ll try and pump. Update Mark. Update my family. And I’ll hold her and love her again until it’s the next time to feed. Or until I have to go.
I have learnt so much these past few weeks. And I can hardly believe I’m doing the things I’m doing. I’ve fitted two of her airways now. And I didn’t flinch once. I can cut the tubes to size, prepare the tape that sticks it to her face. I recognise her oxygen saturation levels. And I know the cries of all the other babies on the unit.
I am used to coming in and seeing new arrivals. And I am used to coming in to see empty cots. And panicking right away too, like I did yesterday, when baby Lola was gone. And I asked: “Did she go home?” And you feel relief when the answer is yes, and nothing bad happened instead.
At home, I simply get by.
I must admit that I hate myself at the moment because I do not recognise the mother I am to my son. I can’t give him as much of myself as I used to and so I creep in every night and cry by his bedside because I don’t have the energy to be the Mama he’s used to. She’s still here, of course. But she’s tired, and scared, and stressed and preoccupied. And I want him to understand but I can’t make that happen, because I am 28 and he is three. And I can’t bridge that gap of understanding. But I try so hard. I really do.
Mark and I are doing well considering. We’ve been so affectionate and supportive of each other. But if one of us snaps and lashes out it’s always me. I don’t know what to do sometimes and I find that I am leaning on him in a different way to how he leans on me. It’s hard to prop each other up though, when you are both hurt. I look at him holding his daughter and I feel so much love. Today, the ward was empty for a little while, as the nurses were in the office and I was the only parent in, and I whispered to Daisy: “You’re here because me and your Daddy love each other. We made you and we love you so much. You’re part him, part me, and part of your big brother. Our missing puzzle piece. We were so excited to meet you. We love you so much.” And that is word-for-word. I made myself remember it.
Today I faltered and almost cried in the unit. Which is the first time that has happened since the day she was admitted. I’ve managed to swallow my tears and save them for the shower where no one can see and they merge with the fall of hot water. Even I can pretend they don’t happen in there. But our discharge meeting has been cancelled in favour of getting her to Manchester Children’s Hospital so the specialist Ear, Nose & Throat team can assess her. This needed to be done so she could go home. But I am scared because my baby is moving further away and will go by ambulance and there’s no room for us. So we must follow behind in the car. Her first time outside and it’s not to go home. She could be there overnight or longer yet. We don’t know. We know this is procedure, but I am still terrified. And desperate for it to be done and over with, and the meeting rearranged, so we can get our daughter home.
Our home is a mess. Or it feels that way. I find myself irrationally struggling with mess. I don’t like our cats anymore and I know that makes me sound terrible, but when they leave paw prints or bring a dead bird in the house, the animal mother inside me rages and thinks: “I can’t bring my baby home to this.” I am struggling to do things like put washing away. Or make meals. And so my COOK voucher from my friends this week has meant I have a break from cooking and have some lovely meals to feed my family, so we don’t just eat junk or eat late because we’re all so behind. Mark is cancelling our holiday and trying to claim on insurance so we don’t come away in debt for nothing. Bill is on the iPad because it makes him happy and I know he is safe. And I am trying my best to do some work I promised to do before I had Daisy, because it’s time, and I don’t want to break my commitments. And, to be honest, the money will help us a lot. So forgive me if normal service resumes in part. But I can’t let myself or my family down.
I’m trying to prepare our home. Get a storage unit for her feeding tubes, her syringes, her airways, the lubricant, the tape, the suction tubes. Gosh there is so much. Her nursery will look like a little unit all her own. We’re going to get our old freezer out of the garage to use for her milk as I have a lot frozen at the hospital and plan to keep building my stash in case I should ever need to give up. I’ve just realised that I’m leaking as I type and I need to hurry up and finish this because I need to heat up our food and pump before it’s done.
And then it’s time to bath Bill, read him books, assure him how loved he is. And then come down and work and pump and try and stay away from the gin, because, in all honesty, I feel like I deserve a gin every day these days!
But the point is. It’s worth it. It is.
I’m terrified. I am exhausted. I hate the smell and look of hospital. I cry every day. And I struggle every day. But I wake up, and I make her milk, and I get myself together, wearing makeup every time so the team sees me as strong and ‘together’. And I go and I try. And I do my best.
Daisy I want you home so much. I miss you more than I could ever say. I want you to wake me in the night. Be sick in my hair. Be difficult and fuss and cry and need me to hold you because I make it better. I want to struggle having two children. Turn up flustered on the nursery run, with no makeup and yesterday’s hair but the biggest smile you have ever seen because I’m finally pushing your pram and you are sleeping in front of me. And I have your brother’s hand in mine. And Mark is with us because he’s finally on paternity leave and we’re a family.
I want that so much.
I want you so much.
Oh please, please, please let next week, your fourth week, the week you turn a month, be the week that you are home.
I would beg, plead, anything, for that to be so.
|“Look! Daisies, Mama! Shall I pick some? One for you, one for Mark, one for me and one for Daisy.”|