23 August 2013

Groundhog Day!!

Sisters <3

Ok, I realize that I suck lately at writing the blog, but I truly feel like I am living groundhog day. You know, the movie with Bill Murray...that is me right now. I wake up with Brinley, I feed her breakfast, we play, she naps at 10:30, I shower, Brinley gets up, we eat lunch and we go see Adele. Next day....repeat!! It sometimes gets overwhelming even though it seems like a nice day to some of you, I assure you, it would be much better hanging out at home with my two beautiful girls.

Adele is doing great, most of the time but I still stare at those numbers up on the screen and get into a total panic when they dip too low. She had a couple of red alarms today while I was feeding her and I felt like I was going to throw up. I think about when she is at home and I no longer have those machines, how will I know??!!?? I mentioned this to the nurse today and she said that I need to focus on her skin colour. She told me that her lips went pale today when her oxygen levels dipped. I didn't notice because she had formula all over them and down her chin. I guess I need to be a little more observant and check for signs. I totally and completely took so many things for granted with Brinley. I took feedings for granted. I took oxygen levels for granted and I never even thought about a baby not being able to go in their car seat without dropping levels. This is all so new, pacing a baby while eating, looking at lip and mouth colour, inserting an NG tube, correct neck positions. My lord, I wish I was a nurse and not a teacher.


Adele didn't pass her car seat test today. She lasted around 20 minutes and that was it....so discouraging yet in our minds we were pretty sure that she would need a few rounds of practice first. We need to be 100% sure that this little peanut is ready to be with her family. One of the nurses checked in on us to make sure that we were ok. We are fine just because Adele is letting us all know that she needs a little more time before she can come home to be with her family.

All I know is that she is doing stellar. She has exceeded our expectations right from the start. I asked the OT yesterday what she thought of her feeding skills. I don't ever want to compare my girls with others but I need a little more information right now on Down syndrome. Adele's sucking strength and feeding skills are equivalent to those of a baby without Ds. That is one thing that is very important to us, we want to be sure that she is able to suck, swallow and breathe and be able to digest her food and poop it out. Oh....once again, the things we take for granted.

Chubby cheeks!!

James and I have set up binders for Adele, divided into sections and ready for everything.....ok, maybe not everything but we feel organized right now. I met with a lovely lady from the Developmental Centre and she informed me of all the services that will be available for Adele. So exciting! I am looking forward to getting started, yet also feel like I may go crazy with trying to deal with an 18 month old too, who also needs love and attention. We will have to make sure that Brinley continues to feel loved and that mommy and daddy have lots of time for her and her needs.

So, we are still not back in our home. I figure at least another three weeks until we are able to return. I will only go back when the air quality is perfect and the house is spotless. We are doing 3 professional cleanings...I'm so OCD, but I need to know that the girls will be healthy and safe.

The other night while I was learning how to insert Adele's NG tube, I smelt this putrid and icky smell, so I looked at James and asked him if that was him or his daughter......the nurse piped up and said that she was sorry, she had chili for dinner and it was her butt! We started killing ourselves laughing and told her that she could be our friend. :)

Another silly story. I asked one of our faves if we should use sterilized water to help insert the NG tube or if we could use our leftover KY Jelly!!!! She went a little red, but I think she gets me! We all laughed and she said that it would probably work the same! Thank god she has a sense of humour. I seriously need some work on filtering.

Beautiful blue eyes :)

Ok, back to serious. :) I have to talk about the nurses at The Rockyview. They have been so amazing with our little peanut. Nurses call in before their shifts to request Adele and some have even said that they will only come in for overtime if they could take care of Adele. She gets so much love and so many snuggles. We feel so blessed. I was talking to my favourite doctor yesterday and he said that he was so impressed with Adele and he told me that he thought she was going to be a very smart little girl. There are so many moments when I am holding her and I get this overwhelming feeling that she is going to make such a difference in this world. She looks around and stares at her mommy and daddy and what we see is this little girl who is going to impact the lives of so many people.

While James and I were laying in bed a while ago, not doing any adult activities because it hasn't been 8 weeks and mommy is absolutely petrified that she will get pregnant...I want at least 7 contraceptives in place before any bedroom fun! ;)
Anyways, James and I were talking about Adele and the love that we feel for her, from the first moment we laid eyes on her beautiful, little face. I said to him, just imagine if we decided to not continue with the pregnancy because of our fears and concerns. Imagine not having her in our lives right now. Imagine not being able to hold her and love her and watch her grow. Imagine if I had gone to the hospital that day and ended it. Imagine where we would be today. Would our marriage actually survive? We would have blamed the other person. We would have to live with the fact that we made the wrong decision.
When we initially found out about the Down syndrome, it was very difficult. All you think about are the limitations and not all of the positive reasons why we should have this baby. Now, seeing this perfect and beautiful girl, all we see is how far she will go and how we as parents will never discourage or put limitations on either of our girls. James and I will settle for nothing less than the best for Adele and Brinley. They are capable of anything and with our support and the support of our family and friends, they will have unlimited potential to become whatever they want to be....nobody will tell us any different.


  1. Well, it sounds like you have some pretty great Nurses! I still can't get over how alert and strong Adele seems to be. Russell was very limp and still for months after he was born. So I think she is doing pretty champ :)

    So if she passes the car seat test Monday are they sending her home with the NG tube? If the OT is saying she is doing good why do they keep it in?

    It will be nice once you can get back to your own house with both your girls. Hopefully it all happens soon! Loved this post! Especially the KY joke, you're a nut! lol

  2. She is doing great but still gets super tired during some feedings, so the tube needs to stay in intil she gets a bit older. If she passes on Monday, we go home! I'm a little scared!
    JC...I bet you have some KY stories. .....:)

  3. Your blog is fantastic and your girls are beautiful. Keep on blogging, I'm hooked on your family's progress :)

  4. Thanks Lorna for the very kind words. I appreciate that you are following along!! :)