27 September 2013



It's time for a Dear Diary moment.....

Well, it's been a difficult few days. Sometimes I feel like I'm drowning. On Tuesday night, Adele's breathing was laboured and she was pale. My mommy instinct kicked in and took our peanut to High River Emergency. Adele's respiratory rate was between 80 and 90. That is too high. I fed her a bottle and she regurgitated the entire bottle. I felt so sad. It was decided that she would go to The Children's Hospital. As they were loading Adele into the ambulance, I cried. It is so difficult seeing your little one being taken away in an ambulance. I was sad.

When I got to the hospital I waited to be seen so I could go back and see Adele. The triage nurse stopped what he was doing and asked if I was Adele's mom. He jogged me back to the trauma bay. It was a bit overwhelming when I saw this little baby on the gurney, crying, surrounded by 8 nurses and doctors. At this point, I was so happy that I had decided to bring her in. I knew something was wrong.
They increased her oxygen and did a few tests. They moved us to a private room and I just snuggled her for hours. I wasn't going to let her go. I needed to hold her and kiss her and tell her that I loved her so much. She slept so peacefully on me.
The doctor came in and we had a good chat. She told me that Adele really didn't look well when she came in and that it was a good decision to bring her in to get checked out. She decided that Adele would be admitted, just to be safe. There were no beds at The Children's Hospital, so they were moving us to the PLC. Another ambulance ride.
By this point, it was around 6:30am and I was delirious. I don't do well with no sleep. I was emotionally drained. Adele was exhausted.
We both napped for a couple of hours.

So peaceful

Both Adele and Brinley have colds but poor little peanut got hit a bit harder. When breathing is already a bit of work, adding a cold on top of that caused great difficulty with her breathing. Who would have thought that a cold would cause her so much grief?
When I returned home, I cried with my mom. I swore and I cried. I told her that I was trying so hard. She said that maybe it's too much for me. I realized that it's not too much for me. I am a mom and I worry about my kids. We want all of our children to be healthy and happy. I want that for both our girls. Seeing your baby being poked and prodded is difficult. Yes, there is added work with Adele. Appointments and writing everything down. All trips. All appointments. Mileage. Meals. Parking. It is work, but she is our daughter. This is what you do as parents.
I'm tired.

Mommy snuggles

The hospital expects parents to stay overnight but last night we couldn't pull that off. James had to go to work early this morning and I needed to take care of Brinley. I felt confident last night that she would be just fine. The nurse was so kind and she was excited to take care of Adele. She was looking forward to snuggles. It's still difficult because they don't know her, they don't know exactly how we care for her and how we feed her.....
I called this morning between shift change to talk to her night nurse. She had a good night but was tired during her feedings. That is normal. Adele is still growing and trying figure things out. She is so precious.
I'm hoping that she will come home today and we can get started....again. We returned back to High River on Saturday. It's been nice. It's sweet to see Brinley with her toys. It is all new to her, this makes us smile.
We finally got a furnace but are waiting on everything else to be completed. It is painful how long it is taking to finish the basement and garage.

I'm feeling better

When I first started blogging, I connected with a lovely girl from L.A. She was so excited to be having a baby. She was so excited to be connecting with another mom who was having a baby with Ds. She kept in regular contact and always checked in to see how the pregnancy was going. She sincerely cared about me. She posted every article she could find on Ds, all positive. She took great care of herself during the pregnancy. She decorated and set up the nursery so that it would be just perfect when she brought her beautiful little girl home. She couldn't wait to hold her baby in her arms. I always felt the love she had for her husband and growing baby. I was a bit surprised that she actually went past her due date. She was being induced. I was so excited that the time had finally come.
Part of our conversation last night at midnight....

I had an emergency C-Section this past Monday because there were complications. She was 3 days past her due date and we were going to be induced but I guess during my last 12 hours of pregnancy the cord wrapped around her neck. She is in NICU, they don't think she will make it through the night.
I am completely heartbroken. I feel like she was fine and everything was great and then things happen and it broke her and now I'm going to lose her and it's not even related to Ds.

I was rubbing her toe and she actually moved her toe, like she was tapping my finger. More then once. Right after that her blood pressure dropped so bad that they had to ask us to stop touching her, and we haven't been able to touch her since because it was making her blood pressure drop dangerously low.... I feel like she used all the strength she had in her to tell us that she knew that we were there and that she loved us.

At this point we want what's best for her... I can't stand not being able to touch her. I never even got to hold my baby....watching her go through this and not being able to comfort her is so painful.

She looks so beautiful and peaceful.

It hurts so much that I don't get to keep her.

They told us that she may go into cardiac arrest at any point so if she does, would we want them to shock her and do CPR? We told them not to do... I want to remember her....perfect and beautiful.

She has changed us so much, so I just want to make her life one of love. If I can help one mom who's struggling with the Ds diagnosis and show her how unimportant it is because their baby will be amazing and perfect, then our little girl has already been the most amazing gift to this world.

Our conversation ended because the NICU called.

Hold your children. Tell them that you love them. It doesn't matter the age. It doesn't matter where they live. Love them.


  1. All right missy... another blog that brings tears to my eyes, please stop making me remember that I have feelings :) your friend in LA is in my thoughts (as are you, James, Brae & AJam) I can't even imagine what she is going through

    It's never easy seeing your kids in a hospital bed for anything, when the boy had xrays done when he was 6 months old they stuck him in this horrible thing to hold him still I cried, when they poked him in the feet with needles to get blood I cried, when he had tonsils out at age 5 I cried when he was rolled in to surgery, When he was 14 and had his appendix out I cried when he was rolled into surgery (see a pattern? and that's just a few highlight moments so many more in his almost 17 years ) you are right no matter what age they are it doesn't get easier. This is not too much for you, you are right about that, it's the same as any other parent who loves their kid so much it hurts. Your a mom who is emotional (just like so many of us and you don't cry because weak It's because you've been strong for so long


  2. I am so sorry that you are having to go through this with Adele. It is crazy how so many of the experiences you are going through we did as well.
    Keep treading water, soon you will be swimming and be able to look back on it all and be so proud of the awesome momma you are. Hope Adele is feeling better and back home soon.

  3. Thanks so much Lisa!! I truly appreciate your words of support. Adele is feeling better and getting back on track. :)
    I am so looking forward to her strengthening up!

  4. So sad to hear about this loss...I can't imagine. Thx for sharing your story as well...little Adele is precious and I hope she is feeling bettetr.

  5. So sad. My heart aches for her and her family.
    Thank you for the kind words. She seems to be doing well....we need her to get stronger....time to start lifting weights. ;)

  6. I'm so sorry for your friends loss, I can't even imagine. My heart goes out to her. Situations like this really put into perspective how little Ds actually matters in the big picture. There was a baby boy in the NICU when Russell was born who also had Down syndrome. He passed away this last year at the age of three, and every time I want to whine or complain about Russell's development or anything Ds related...I remind myself of how his Mother would give anything just to have her boy with her, Ds or not. My prayers are with your friend. Also hoping little Adele is doing better and is at home now.

  7. Thanks Jenny! Sure makes you look at the big picture. My heart just aches for her and her family. So unexpected and so sad. :(

  8. Oh Krista I am so sorry for your friends loss. I am sitting in my living room (Jimmy just kicked me out of our bedroom for sobbing too loud because he has to work at 5am and if its not an immediate emergency and our family is ok than he trusts I will be okay lol) and sending love and strength (although I know this is from a while ago) xoxo

    1. Such a sad time. When we recently went to Disneyland, she got snuggles with Adele. We are so blessed to have her in our lives. She is a beautiful friend. Xo

  9. Please next time you see her attack her with a hug from me. Attack as in like a 20 minute hug. Adele honestly could snuggle anybody into a happy oblivion where there is no time, rushing or fast paced anything. Only snuggles and smiles with Adele bcuz at that moment, Adele is the only thing that matters. Her energy must be so ridiculously amazing. Its almost like her happy energy radiates off her pictures. You can literallt feel that smile.