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Dear Rainbow – A letter to a 4 month old

6th December 2015

Hello Little Princess,

Today you turned 4 months old.  4 months ago, you arrived, turning my world upside down.  Although, I thought it was going to be a simple case of settling in as a family of 6.  I had no idea what it would really bring.  You are a heart baby!

In the last 121 days you have spent 40 days in hospital…  That’s 1/3 of your life. 

4 months ago I became a heart mummy to a heart baby.  At the time I didn’t know exactly how much that would change my life… I can tell you for certain that it has changed me in ways I never could have imagined.

The last 4 weeks have been spent watching you in a hospital bed.  You are constantly connected to the Sats monitor; you are NGT fed. The last 4 weeks have been hard.

The last 4 weeks have brought some good things though.  You have gained weight… almost 1kg to be exact.  You now have the energy to start playing.  You are smiling more.  You are looking healthier. 

Heart Baby

The next month will bring the biggest challenge we have had to face yet…

Your cardiac team have given up on the idea of getting you home for Christmas… in fact they have told me it is unlikely.  Instead, as soon as you are clinically well and the surgeons agree, you will be transferred to Bristol to have your heart fixed. 

I will be putting your life in the surgeon’s hands and that, on its own, will be the hardest thing I will ever have to do. 

You will undergo open heart surgery, followed by a stay in PICU, PHDU and Ward 32… To say I am terrified is an understatement… Especially as this could all happen before Christmas. 

Whatever, whenever, I will be here Rainbow!  I will be next to you, holding your tiny hands… showing you how much I love you.

I love you Rainbow.

xxxx

8 Comments

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  • Reply
    Louise (Little Hearts, Big Love)
    7th December 2015 at 10:48 pm

    Thinking of you all at the moment Beth – being in hospital and waiting for your baby to have surgery is so hard, especially at this time of year. Jessica spent her first Christmas in hospital too as she had heart surgery in the run-up to Christmas and I remember feeling like I couldn’t even begin to think about Christmas until after her surgery had taken place. In spite of it being in hospital though, that first Christmas was still magical. So good to hear that Rainbow is putting on weight and smiling more and she looks so adorable in your photos. Wishing you all the best for her surgery – you and your family will be very much in my thoughts and prayers this month xx

    • Reply
      Beth
      10th December 2015 at 8:39 pm

      Thank you Louise… I’m feeling so broken at the moment… It doesn’t help that Bristol is rammed at the moment and it is unlikely to be before Christmas now. We do have the added benefit that VSD repair is minor surgery in terms of Cardiac surgeries and they tend to slot them in between the major surgeries. :s

      • Reply
        Louise (Little Hearts, Big Love)
        11th December 2015 at 9:41 am

        So sorry to hear that you are feeling so broken and that Bristol is busy – it is so hard to be in hospital at this time of year especially and the wait for surgery is never easy at the best of times. Hope Rainbow gets the surgery she needs very soon and sending virtual hugs your way xx

        • Reply
          Beth
          11th December 2015 at 4:24 pm

          Thank you Louise! I’m reciprocating the hug! I’m sure her first Christmas won’t be as bad as I am imagining…

          She’s getting stronger so I’m hopeful that she will bounce back. 🙂

          xx

  • Reply
    Kim Carberry
    7th December 2015 at 9:57 am

    Thinking of you both! It sounds like Rainbow is doing so well with putting on some weight….I hope she gets her surgery soon so you can go home! Sending love and hugs x

    • Reply
      Beth
      10th December 2015 at 8:36 pm

      Thank you… Her Drs are hopeful that she will be slotted in between Christmas and New Year.

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