Our Life

2014-03-25 14.24.19

My sweet baby girl recently turned eight months old. She is a beautiful, cuddly baby, and I adore her. But these past eight months have not been easy. When she was born via C-section and required some resuscitation, it set off alarm bells in my head that simply would not be quieted. As the hours, days, and weeks passed after her birth, my mommy spidey-sense was tingling. Something was not right. First, it was way in which her left eyelid was droopy. Then, it was the severe diaper rash that would not clear up. And when I say severe, I mean her skin was raw and bleeding, and no amount of prescription cream or rigid skin care routine worked to heal it. She was also very congested- rattly breathing with copious secretions that she had a hard time clearing. And then there was the feeding. Oh god, the feeding. Nursing her every one to two hours for months. She stubbornly refused the bottle, which meant that I was the only one who was able to feed her. I was beyond exhausted, and frustrated at constantly being told she was fine. I knew she was not fine, and that something was not right.

At our two month check up, I was no longer alone in the feeling that something was wrong. Our family doctor noticed that her head was small, and when she measured it and plotted it on the growth chart, it was clear that there was a problem. Her head was in the <0.01 percentile for size, meaning that less than 1 in ten thousand babies would have the same head size at her age. And thus began months of tests and worries. Weeks of phone calls, trying to get her moved up on waiting lists to be seen. Desperate for answers, and yet scared of what those answers might be. One of the worst things about the whole experience was the way in which I was often treated as an over-protective, hyper-worrying mom. And when the dust settled, we had a diagnosis: our baby girl is missing part of a chromosome, which has caused some abnormalities to her brain. This puts her at high risk for developmental delay and seizures, and in fact, she is about four months delayed at this point. The frustrating part of this diagnosis is that no one has been able to predict what her future will hold- there are no other known cases of people with this particular chromosome deletion. So it’s an answer that has led to more questions: Will she always be four months behind her peers or will that gap start to widen? Will she be able to lead an independent, fulfilling life, or will she continually face struggles? What new health problems will appear as time goes on?

Our current struggle is with her ability to swallow. A recent test showed aspiration during breastfeeding, meaning she was inhaling the milk as she was feeding. This led to a hospital admission and insertion of a feeding tube so that she could be nourished safely. This has turned out to be a bit of a blessing- for one thing, I am not the only one able to feed her, so I am finally getting some rest. For another, we have noticed a huge change in her- she is happy, alert, and far more interactive these days, now that she is finally receiving the right nutrition. The feeding tube is a bit of a pain to deal with, but it is certainly worth all the headaches to finally see our baby thriving.

So this is where things stand now. Our older daughter has been an absolute angel throughout this entire experience. She was never jealous of her baby sister, and is so sweet and loving towards her every day. She is understanding of her sister’s complex needs, and easily rolls with the punches with a grace and maturity that belies her three and a half years of age.

I decided to start this blog so that I could have an outlet for everything that is going on in our life. Some days, I just want scream and cry with grief and frustration, and I thought that writing here might help me get through those days. I also want other parents who have gone through or are currently facing health problems in their children to know that they aren’t alone. I have felt very alone at times while dealing with all this, and often still do, so I’m hoping that reaching out in this forum may help with that, too.

I know that no one knows what the future holds for their children, and I know that, unfortunately, many parents have to face far worse problems with their children. I know that I am lucky to have two beautiful, sweet daughters, and I wouldn’t trade either of them for anything. Knowing all of that, though, doesn’t mean that I can’t grieve for the situation I find us in. Somehow, I have to find a balance between the grief and the gratitude- someday, somehow, I will find it.

-Julie Steel

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20 thoughts on “Our Life

  1. Julie, I am so sorry you and your family are going through this. I know as a young mommy how much you worry about every single thing with your young children so I can’t imagine how hard it is for you. She looks like a very happy, content baby so I think that is a testament to you and your husband and, of course, her big sister. Continue to make your home happy, noisy, and fun and you will have a happy family. I also hope that writing will be cathartic for you. It is a great idea and to know you are not alone. I will being praying for Penelope and you and your family. (If you are anything like your mom – you are a wonderful mom!!)

  2. Thank you for the update very happy to read some of your story and your ups and downs. I think of you all daily and you are not alone. I can’t tell you of the many times that I have wanted to sit down and send you a card and tell you what a great mother you are to your girls and that you are a string person and Penelope will be able to conquer the world because she will have a mother behinde her made out is Steele that won’t let her give up and won’t let anyone say she can’t. Wish I lived closer and could help or visit easily. Look forward to following your blog. Hold your girls tight you are blessed.

  3. Oh Julie, I feel for you. Being a mommy isn’t easy. Especially with obstacles. Every time I see you there’s a smile on your face. Like nothings wrong and everything is great. You are raising 2 amazing little ladies. With you as their role model they can’t go wrong. Its always a great idea to have an outlet of any kind to talk about the hard bits of our day, month, year.. A lot of people don’t recognize that they need that for their own sanity. Keep up the great work Julie.

    P.s. Playdate soon??

  4. Julie your blog is beautiful and truly from the heart. Penelope will find her way. Having a good support system is really important to you and her.Hoping to see you in Guelph at Easter.

    Love you favorite aunt, Anne Marie

  5. A blog, this is exciting! You are an amazing mother to these little girls, and have been so dedicated and sacrificed so much the past many months of difficult feedings and diaper changes and no sleep… I am often in awe of how you have handled things. Looking forward to reading along:)

  6. Julie, thanks for sharing your story. I have always loved the pictures of your girls on FB and I think you are doing an amazing job as a mother. Now I can understand more the challenges that you are facing. Looking forward to your further updates. Your mom was so proud of you and her strength and legacy live on with you and your family. I feel certain you will find a balance between the grief and gratitude.

  7. Julie, you are a rock for what you have gone through and I don’t ever remember seeing you without a smile. I know somewhere up above someone special is giving you the strength to get through each day. You are doing an amazing job and just looking at the beautiful faces of your precious girls shows you that every step on this path is a step in the right direction. I am so happy to see your blog and will follow it with hope and prayers for you, God Bless, Aunt Gail

  8. Wow what a hard, yet strengthening, thing to go through! Thanks for sharing this part of your life and it sounds like both of your daughters are very lucky to have you!

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