Wednesday, August 31, 2011


We have always been lucky having a happy girl who likes her sleep. Saoirse has actually been sleeping through the night since she was about 10 weeks old (yes weeks!). Mike and I got quite accustomed to our quiet nights, sleeping until 7 or 8 am without interruptions. However, with all the hospital visits, her sleeping habits have been interrupted quite a bit. When we are in the hospital, we have to put her completely to sleep before we put her in the crib so she doesn't tangle her IV tubes. This means that we have to repeat "cry it out" almost every time we come home. Usually it only takes one night, and she goes back to going to sleep on her own easily, but that first night is always a nightmare. She is getting more used to going back and forth, but after the Mucositis stay, she had a rough time. 
Since Saoirse started treatments, she has had a few nights here and there when she would wake up. At first we thought a lot of it was nausea, and we would give her more meds and feed her, but eventually we realized that some of it was just repeat waking because of the disturbed sleep at the hospital. So we spent a while weaning her off the night feedings and meds, and we eventually got back to full nights of sleeping, with one minor addition - night screaming. It's rare that Saoirse will full on wake up in the night, but she now has many nights when she screams out. She has a blood curdling scream, and it breaks my heart every time I hear her. We know she's usually not fully awake, because a couple times we have gone into her room, found her still lying down with her eyes closed, and if she did look at us and woke up it disturbed her even more. We no longer go into her room, but occasionally there will be nights when she screams out more than once. I just know that she is having nightmares about what she is going through. She may not understand it, and may not seem to notice while she's awake, but I know that she's dreaming about the pain that she's experienced. I hate that I can't keep her from feeling that pain. I only hope that she will eventually forget everything and the nightmares won't continue for too long after she's done with treatments. 
The nights are getting better, and since her last hospital stay, she has had less nightmares. Most days we don't hear from her until 6 or 7 am. However those nights that she does scream out aren't any easier for me or Mike. It's just so hard to realize that she has experienced things that make her scared. As a mom, you want to protect your children as much as you can, especially when they are so young, and you don't want them to experience anything that would cause them pain. But when the thing she is afraid of is saving her life, there is no other choice to be made. All we can do is make the good, fun and loving experiences happen as often as they can, and hopefully that's what she start dreaming about. 


  1. I am so touched by this story, and how amazingly you have dealt with the agony of both you and your newborn baby having been diagnosed with cancer! I can't imagine the thoughts that cross your mind daily, but to see the smiles on your faces brings an aching pain to my heart! I too have had experience with Children's Hospital...nothing of the severity of your experience but they are the very best at what they do...i want to send you some headbands that i make for babies just like yours! she is gorgeous and so are you, both on the inside and out! I am not one to cry at a story or well up with tears during a happy/sad moment but this article and your story has brought both tears of happiness as well as grief to my eyes! i can't imagine having the strength that you do to carry on, and I am ashamed that I ever feel like not getting out of bed because of the nonsense crap that everyday life brings. You are an ispiration and your daughter is gorgeous! If you inbox me your email or home address i would love to send your daughter some headbands! Stay strong and keep on well as smiling...i believe that with every smile we get or recieve makes this world a better place!
    Best Wishes to you and yours!
    Heather Fitzgerald

  2. I understand the sleeping issues. Alexander spent so much time IN the hospital, that when we did get to get him home, he had a hard time adjusting to his crib and bedroom. It was as if HOME was the strange place and the hospital was "normal'. One thing I did, was to always have nice soft music playing during sleepy time - naps, nighttime, etc. I had an MP3 player for the hospital with speakers, and kept it on repeat. I think that seemed to help him a lot. At home I did the same thing