Blog Daisy Nelle

Daisy Nelle

I have a daughter.

It’s taken me a very long time to find the time, and the words for this post.

She’s two weeks old. Two weeks and three days. And the beginning of her life so far has been one of the hardest and most beautiful times of my life.

There’s a lot I want to say. But I will struggle to get things down in this post. Because there’s the part of me that just wants to celebrate my beautiful daughter. To not have to explain her tubes. And hope people can see past them. I love her so much. I can’t explain how much. Then there’s the part of me that wants to be honest about how I’m feeling and how life as a mother of a Special Care Baby Unit baby has been.  The part of me who is grieving not having her home yet. Grieving the past couple of weeks and what we’ve endured. And grieving a change of perspective and a change of what I expected to just be rightfully mine. Then there’s the part of me that feels immense guilt. Guilt for passing on a syndrome to her. And knowing that she’s in hospital right now, in the next town, because of me. And then there’s the part of me that doesn’t really know what to say.

I won’t do her birth story until she is home. It doesn’t feel right without her here. But I will do it soon. I’ve made notes so I don’t forget. Her birth was actually amazing. And I doubt I will ever forget it. But those tiny details can always fade. So I’ve got them safe for now.

I always knew there was a chance that my children would have my syndrome. I’ve tried to write about it before. But it’s been a weird knowledge to have. Because here I am, living my life, and not knowing any different. I don’t remember the days in hospital. At least not the newborn ones. Which is a small relief, now I am playing the role of mother in this life of deja vu.

There was a 50% chance. And we had the extra scans. And we were so confident she would be okay. The first thing I ever said when Bill was born was a desperate ask of: “Is he okay? Does he have a cleft palate?” But with her, my face broke into a mixture of tears and joy and I whispered: “She’s here. I did it.” It never occurred to me this time to worry.

But Daisy is just like me.

Daisy has a cleft palate. A complete cleft of both the soft and hard palate. She has my syndrome. Our syndrome. God there’s two of us. I never expected to say ‘our’. Marshall Stickler Syndrome. Including the Pierre Robin Sequence. A small lower jaw, which causes the tongue to fall back over her airway. A small nose. But also big, beautiful eyes.

In time, her jaw will move forwards, just as mine did. The specialist cleft team could hardly believe I was ever in her position. “You can’t tell at all.” But for now, we’re being trained on how to fit her airway. It’s called a nasopharyngeal airway. And we have to insert it through he nose and down her throat. And it’s scary. It’s horrible actually. But it’s reality and we’ve had to just…do it.

It’s been so hard because my whole family are having a huge, heavy sense of deja vu. They look at her and they see me. But she isn’t me. She still has a lot to go through. And I’m scared she might not be as lucky as me. Some children can have hearing, sight or learning difficulties. And our daughter has shown herself to be as bright as the shiniest button, but you still worry. What if?

The hardest part hasn’t actually been the diagnosis. And the fact that our daughter is a bit different. I don’t care. I’d love her no matter what. And I’m fiercely protective, proud and so very in love.

But leaving her behind. That hurts most of all.

The day I discharged myself from hospital was the hardest. I was there for five days and I couldn’t do it anymore. I couldn’t cope with the same bed. The same curtain. The same meals. The suffocating feeling that left me clawing at the walls and desperate for air in my lungs. Air that smelt of outside. Or something new.

I felt like I should have tried harder. Stayed longer. But I was struggling. I would cry into a hospital bed sheet and pray no one would hear. I would listen to other parents join the ward, with their new babies. Waking with a start to cries in the middle of the night and realising that it couldn’t be my Daisy because she was in the incubator next door. Listening to mothers talk of tiredness to visitors, and trying to remember that struggles are relative and that it probably would have been me, had things been different. And setting alarms to pump in the night. Shivering because the ward was cold. And crying because I was worried my supply wouldn’t be enough for my daughter who needed it.

In the end, we left. Mark drove us home. And it was sunny. The car seats behind us were both empty. And I cried.

That feels like a long time ago now. Now we seem to be managing better. There’s a sense of routine. Crafted and built around me by my family, who make it possible. My mother mainly. Who is watching her baby endure what she endured for me.

Mark has been incredible. I spent so many days apologising to him. I was so worried he would blame me. Or regret ever taking a chance on someone like me. But I’ve realised that my guilt stops me from seeing how amazing he is. And how lucky I am. And we’ve struggled, sure. But I honestly think our daughter was meant to be. And that she was born to us, because we can be strong for her and we can survive this. I know that sounds cheesy and perhaps a little over-hopeful. But she’s felt fated from the moment we knew she existed.

Bill has been so brave. He’s struggling. And I can tell. But he doesn’t show it. He has this ability to put a brave face on and find perspective, when he’s not yet four. He’s comforted me. And told me it will be okay. “It will be okay Mama. You just have to be patient.” And do you know what? I’ve not been the mother he deserves at all. I’ve been teary, tense, preoccupied, and tied to a pump sometimes. Pumping milk for his sister, like I did for him. And he’s accepted me.

My family and friends. The strangers who I don’t know, but have reached out to me. If you are reading this. Then I can never repay you. I will never reply to those messages and comments. There are hundreds. And I will never manage it. But there have been times where I have barely been able to read them through the tears, and you have brought me so much comfort.

And Daisy. Daisy is wonderful. Daisy is the little girl who has the most beautiful eyes I have ever seen. Daisy looks more like her dad every day. Daisy is trying to smile. And no one who knows her suspects it’s wind. And I have a team of nurses on my side for that one. Daisy has had bloods taken every day. And now she takes it in her stride. She has removed her tubes and caused panic. She is alert, awake, curious. She is sometimes lonely and bored. And I know she wants to come home. She picks out my face. And she looks at me like she knows me. She rolls her eyes. Frowns. Bats your hands away if you tickle her. Like her dad often does.

She is my daughter. The baby I waited nine months for. The little girl I dreamed about. The little girl I couldn’t imagine my heart growing for. The one person in this world that ties me, Mark and Bill together.

We just want to get her home. That’s all we can think about.

And we will.

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  • Reply
    8th May 2016 at 8:22 am

    More beautiful words, but I should expect nothing less from you, Charlotte. You and Mark have been so brave these last couple of weeks and it'll pay off. You'll get Daisy home and these few early weeks of her life will become a distant memory as I'm sure it is for your parents. Daisy was sent you you because you're both so strong and because Bill will be the best big brother there ever was xx

  • Reply
    Beth Twinderelmo
    8th May 2016 at 8:35 am

    Thank you for sharing your beautiful little lady with us! It's been a pleasure to watch her from bump to baby and you are so right to want to show her off and be oh so proud of your super alert gorgeous little girly. You are such a wonderful little family and the love you have for your two babies permeates in every single word you write. Daisy obviously thought her mama was the coolest and wanted to be like you in every way! Hope the countdown until home ticks away quickly and you get to look back on this post and all your Instagram photos where you were feeling at rock bottom and smile. And turn to her and say – look how far you've come and she will smile back. You two are so much more than mother and daughter already… And with two big boys to look after you I think you're made 🙂
    Look forward to more Daisy Nelle spam xxxx

  • Reply
    Trying at life
    8th May 2016 at 9:00 am

    Removed my last comment as it didn't get across all the things I want to say to you in the right way. I just want to give you a big hug Charlotte! Following you from your pregnancy announcement all the way through to having your beautiful little girl has been so touching, and I feel as if I know you, which must be strange as you don't know me! You are doing so well, even if you feel at times you aren't, and I know from experience people saying "you're so brave" can mess with your head too, for me anyway. You have two gorgeous children, sending love your way xxxx

  • Reply
    8th May 2016 at 10:21 am

    I've read you for some time, especially as I've been a working mum, feeling so torn like I know you have(girls 4 and nearly 6). I've only felt like messaging now. Your baby is gorgeous. You're doing a brilliant job in very hard circumstances. Keep it up x

  • Reply
    Jess | The Indigo Hours
    8th May 2016 at 1:03 pm

    Oh Charlotte. She's beautiful and you're doing so well – all of you, Mark & Bill as well. I can't imagine how hard it must be for you all at the moment, but she'll be home with you soon and it'll feel like it's always been that way. The most important thing is that she's loved ♥
    Keeping my fingers crossed that everything goes well and she's home with you sooner rather than later – I've been looking out for your updates 🙂

    Jess xo | The Indigo Hours

  • Reply
    Katy F
    8th May 2016 at 1:30 pm

    Oh Charlotte. There are just no words. I hope it isn't too long before she is home, I cannot imagine how difficult the last few weeks have been. Sending you lots of love and strength. xx

  • Reply
    8th May 2016 at 5:39 pm

    Your baby is beautiful. My youngest child was born with cleft lip and palate, so I can understand where you are coming from.. Take each day at a time. All will be better eventually. I hope that you can take your precious child home soon.

  • Reply
    Lauren Woodward
    8th May 2016 at 6:34 pm

    You are incredible. You really really are.
    And Daisy is so beautiful.
    Sending you massive hugs because I don't know what else to say xx

  • Reply
    Laura CYMFT
    8th May 2016 at 6:47 pm

    Such a beautifully written post. I can't begin to imagine what you are going through but know that you are an amazing mummy to both Bill and Daisy! She is absolutely beautiful and I hope she can come home to be with you all very, very soon.

  • Reply
    8th May 2016 at 6:59 pm

    you're not the reason she is in are the reason why she's in this world (well,yeah,there's mark,but still – you made her!), you're her mama, that's all that counts. things will sort themselves out,they always do, and you're doing fine. don't beat yourself up, look after yourself (but you know that.)
    a hug- kati

  • Reply
    My Two Mums
    8th May 2016 at 8:24 pm

    She is so very beautiful and we are sending you all giant hugs for being so incredible.

  • Reply
    Sarah Rooftops
    8th May 2016 at 8:27 pm

    Oh, Charlotte, she is beautiful. I hope you have her home with you soon. I was only separated from my daughter for three nights but they were the hardest time of my life – I cried so much, needing to have her with me. I can't imagine how brave you're having to be. x

  • Reply
    newcastle familylife
    8th May 2016 at 8:31 pm

    Welcome to the world little one. She is beautiful , those big eyes are stunning. She sounds like such a wonderful little girl who is very lucky to have a mummy and daddy who love her so very much. I can't imagine what it is like being apart from her and I hope that she is soon home with her family where she belongs xx

  • Reply
    Jen Higgins
    8th May 2016 at 9:38 pm

    She's beautiful and perfect! Thank you for sharing this very personal journey with us.

  • Reply
    S, x
    9th May 2016 at 8:44 am

    Diasy is so beautiful, and so lucky to have you as her mama. I hope you get her home soon so your family can all be together xxx
    Sophie Cliff

  • Reply
    Non de Plume
    9th May 2016 at 10:33 am

    So also utterly adorable! Congratulations…my own clefty baby is now 19.

  • Reply
    Amber Wilde
    9th May 2016 at 5:28 pm

    She is just wonderful, Charlotte, and you are amazing. I'm so very terribly sorry that you have so much to deal with right now, my darling, but please know that I am full of admiration for the grace with which you are handling it.

  • Reply
    Laura Little Ladies Big World
    9th May 2016 at 7:48 pm

    Ah look at those gorgeous little toes! She is so adorable. You are going through so much and I can't imagine how torn you feel. I hope that you have her home with you soon and know you're doing amazing xx

  • Reply
    Natasha Jarvis
    9th May 2016 at 7:56 pm

    Charlotte, I am long time reader who just wanted you know, Daisy is beautiful and so adorable! Keep smiling and I hope you will all be home soon xx

  • Reply
    9th May 2016 at 8:04 pm

    Congratulations on your beautiful daughter, and heartfelt wishes that you soon have her home with you where she belongs.

  • Reply
    a noni mouse
    9th May 2016 at 9:14 pm

    Come from the link on Mumsnet.

    14 years ago I was discharged from the hospital, 10 days post cesarean. My son came home at exactly 5 weeks old. You are so right, it hurt so badly to leave him, every time. I cried all the way home that first time, I still remember the songs on the radio and cannot listen to them even now.

    But your gorgeous girl will come home, as my ds did, and the pain will fade. Never be forgotten but it will fade. And you will look at this young woman in front of you and wonder how she was ever that small, ever that vulnerable.

    No matter what challenges there are ahead, you will fight through them as you are fighting through the days at the moment. And that amazing smile, that beautiful face, that gorgeous girl will be your inspiration every time.

    I know that probably sounds cheesy, but 14 years down the line, I am so proud of my ds, of all he has achieved against the odds, and he truly is why I keep fighting through the challenges he has.

    Congratulations to you, Mark and Bill, and welcome to Daisy xxxx

  • Reply
    10th May 2016 at 7:33 am

    Congratulations she is so beautiful! Leaving them behind is the hardest thing for us to do but sometimes it is the only way. I did it twice with my second and third boys-one preemie and one full term but with terrible lungs. You will have her home soon.

    My niece was born with Turners syndrome. A scary cleft palate as your Daisy does as well as holes in her heart and an incorrectly attached artery resulting in major surgery at two weeks old where we nearly lost her. She has hearing and speech and sight issues and a very impressive scar that wraps around her back like a shark bite. She is the brightest toughest funniest strongest four year old I know. My sister pumped for three months and they used the vacuum squeeze bottles and did all the exhausting vital things that have to be done. They just got done. You will get them done too and you will be just wonderful at it. You've made a miracle just like you xx

  • Reply
    Jenny Ripatti-Taylor
    10th May 2016 at 1:40 pm

    You are an amazing mother to Daisy you are strong for her, love her, care for her and her whole world already. She is just absolutely gorgeous and will grow up to be amazing just like her momma did, does, and will continue doing! Lots of love. I look forward to baby cuddles soon too and sending you lots of love and prayers for a speedy home return. This time will pass and you will all be together.

  • Reply
    Susan Mann
    12th May 2016 at 9:34 am

    You are an amazing and incredible mother. Daisy is beautiful and I hope she is home with you soon. Stay strong and lots of love xx

  • Reply
    12th May 2016 at 9:30 pm

    She is just beautiful, as are your words x

  • Reply
    Danielle A
    17th May 2016 at 11:21 am

    Congratulations on the birth of Daisy. I hope you get to bring her home as soon as you can xx

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