27 August 2013

Dear Diary....

Our beautiful Adele

Yes, I am the blogging queen right now as I need to write (type) my thoughts down every night. It makes me feel better. This post, I am going to pretend that it is only me reading it.....

Dear Diary,

I had a bit of a crappy day. I called this morning to check in on Adele and the nurse told me that she just had a red alarm. Her heart rate dipped, her oxygen level dipped and her skin went pale. I felt ill. I know that James has to work and provide for his family and he also needs to spend time with his new baby girl. He was put in a tough position. He left work and came home so we could go to the hospital to see our peanut. Thank god for my sister. Thank god that Brinley is obsessed with her Auntie and her cousins. I feel comfortable and I don't worry about her care or that she is being neglected. The only time Brinley would be neglected would be when Auntie is Tweeting out my blog or pinning it on Pinterest!
Anyways, while we were waiting for Ange, the nurse practitioner from the hospital called. As soon as I saw the number, my heart goes into speed mode and I feel instantly like I want to throw up. She informed me that a portion of Adele's top right lung had collapsed and that they will draw some blood and she was back on oxygen and would have an echo this afternoon. She was going to call The Children's Hospital to try to get her in for a sleep study to determine why her breathing is laboured and the reason for the indrawing. I took in as much information as I could then I cried. I tried so hard to stop but I felt like I was drowning. She let me know that Adele was ok and to come into the hospital and she would sit down with us and go over the x-ray and answer any questions that we may have regarding Adele's little setback. I hung up and cried some more. I stopped crying, then I cried again.


We left for the hospital and I felt better the second I saw our little peanut. She looked pale. I picked her up and put her on my chest and snuggled her close and hard and rubbed her little back. I whispered to her just how much I love her and that she is beautiful. The nurse came up and as soon as she started to talk to me, I cried. For the first time, I had a moment. I had a moment that hurt my heart. I had a moment that made my head spin. I said to the nurse, through my tears that I wondered if we made the right decision and if this was truly fair to Adele. Having a baby with Trisomy 21 and putting her through tests and needle pricks and oxygen tubes and NG tubes and a home in the NICU. Who deserves that?? Why would I as a parent do that to my child? This has nothing to do with me. This has nothing to do with my duties as a mother. I visit Adele every day, sometimes twice a day. Why? Because my love for Adele is so overpowering and I am her mother. Is it fair that I knew before hand that she may have health concerns and that I still continued with the pregnancy? These thoughts rushed my into my mind. I felt so sorry for our baby at that point and blamed myself for bringing this little girl into the world knowing that it wouldn't always be easy.....
The nurse looked at me and said that of course we made the right decision and that the love we have for our daughter is so amazing and wonderful. She told me with tears in her eyes that she thought about Adele the night before, all night. My heart felt good.

So sweet

I gathered myself. I got my mind on track, somewhat and told my baby girl that I loved her. I am telling you, don't take your children's health and well being for granted. Feel blessed that you have your children with you at home, that they can eat, walk, breathe and sleep. I have never in my life thought that our world would be consumed with oxygen levels and heart rates and respiratory rates and daily visits to the NICU. I took for granted putting a baby in a car seat and running around doing errands and not even thinking about if my baby was safe and well....I just assumed that she was fine. So many things I have taken for granted.

We will be bringing a baby home with an NG tube and also she will be on oxygen. We need to call the medical air companies and have them set the home up for Adele. We will need a lot of medical supplies for feedings and we need to monitor our little one to make sure that she is well and healthy. I am scared. There is no set date but it could be soon.

Before leaving the NICU tonight, Nurse Betty gave me a card.

Beautiful Adele,
I was thinking of you and your family
I was thinking of your journey through the NICU.
A journey filled with many ups and downs, but most of all I was thinking about what a loved and blessed little girl you are and what an amazing and beautiful family you have been born into.

Nurse Betty. :)


  1. My heart aches for you that you had a crappy day. I sit here reading your blog through tears tonight as I am taken back 2 years ago when Davis was born and on his NICU journey. SO many things that you wrote I remembering feeling but it will get better!! Those setbacks are the most devastating and I remember all so well feeling like I can't do this anymore but I assure you, you have more strength in you than you think you do(if I survived anyone can!!) and sweet Adele can feel all that love she is surrounded with. If today is the first "moment" that you had then I am impressed, I had those daily and on those crappy days, hourly:)
    Hang in there, Adele will be home with her family soon. Thank you for sharing your journey.

  2. Lisa, thank you so much for your kind words and for your support. I do like knowing that my journey is similar to others and that things will get better. When you are in the moment, it just feels awful and your emotions are so out of control. I am looking forward to bringing her home but also scared. I hope I get some sleep.
    Thank you again. I would appreciate it if you could keep giving me feedback...this made me feel so much better.