Amryn's 7th week

Amryn has experienced a lot this past week! Her first Christmas, her first night away from me, and two birthday parties!
Nick's birthday, Christmas Eve, was a busy day, as my sister and her family came over during the day and Nick was on the phone a lot with his family and friends. In the evening, we had planned to spend some time together, but unfortunately Amryn was not doing well, and we almost took her to the hospital. She was having trouble breathing, and no matter what we tried, nothing seemed to help. Her new medication is supposed to "keep things down" so she won't vomit as much, but in the process it seems to make everything in her tummy very thick, so when she does have reflux, it gets stuck in the back of her throat. She was too weak that night to cough it up or swallow it, so instead it sat in her throat and caused her to have breathing difficulties. At about 3 am we were considering taking her to emerg, but then she suddenly started breathing well again, so we were VERY relieved. She was able to get through it on her own, which is a very good thing.

Christmas Day we went to my Mom and Dad's and had a wonderful day, and Amryn did not throw up at all! A complete turn-around from the night before. During dinner we had her in her basket bed up on a box so she could see what was going on at the table, and every once in awhile she would wake up and look around. She even stayed awake and alert the whole time we were exchanging gifts. She loved the noise, the lights, the laughter... it was really special to have her share in all of it, and to have so much family there to share it with.

On Tuesday night we had a respite nurse come in so that I could try to get some sleep. It was Amryn's first time being out of our bedroom during the night, and she hated it! We went to bed at 11:30, but I couldn't sleep because I could hear Amryn crying. The nurse was good with her; tried to sing to her, rock her, cuddle her... but Amryn did not stop crying until I came out and held her. The same thing happened all night... every few hours I would hear her fuss and whimper and cry and she would only stop if she heard my voice or if I would hold her!! It was actually kind of cute! I should have been annoyed, but instead it made me love her more. Sometimes I feel like all my efforts are in vain, but that night my motivation was renewed. It reminded me that she needs me not only for her basic needs, but for comfort too! Just because I am her Mommy. I'm going to miss her so much.

On Thursday we had another uplifting visit from our Pastor. We really appreciate these visits. And the girls love having a new audience. It's funny how they try so hard to get his attention and just run around and play even though we are in deep serious conversation and even shedding some tears. It's just become a new norm for them, I guess!

Friday we had another nurse come for a "meet and greet". She has never cared for a baby so young, and wanted to get acquainted with Amryn and our routine. She was supposed to be the one who was to come on Sunday morning so Nick and I could go to church together, but we have since decided to cancel that. I don't feel comfortable leaving Amryn alone with a stranger. If we are in the other room is one thing, but out of the house is another... even though church is just down the road, I'd be nervous during the whole service. But we had this nurse come in just in case she ends up helping us out at another time.

Friday was Lydia's birthday (see previous post) and Amryn blissfully slept through the party. Lydia had us in stitches, though! She is such a funny kid. Amryn had another good day...she never seems to throw up or choke when other people are around. As soon as they all left she started it up again! I spent the morning and a good part of the day trying to track down our pediatrician to tell him the new med is not working, and to try to get a suctioning machine put in the house. At the end of the day, the doctor had still not returned my messages and attempts to page him, and three public health people called at different times to try to talk us out of getting the machine. Apparently it is quite invasive and could actually cause more problems if not used correctly, and they don't think it is necessary yet. Plus getting one would mean having more people come to the house to assess Amryn, train us in using it, signing papers, etc. So in the end we agreed that perhaps her episode of breathing trouble was an isolated incident and if it did happen again, we would call 911 and if she was made stable, would head over to Canuck Place where we would have all the things needed to deal with such difficulties. We pray it won't happen again.

So, after another week, Amryn is not doing as well. We are noticing some changes. Her muscle tone is much weaker; when I unbundle her for a bath her arms just limply fall to the sides. She no longer needs to wear scratch mittens, as she can no longer bring her hands to her face to pull out her tube. Her colour is getting more pale and bluish, meaning her heart is probably not pumping as strongly. She just looks more tired and it is harder to get her to smile. She also has lost her lusty cry. But we don't give up! There are still times where she is wide awake and bright-eyed and melting our hearts. We still love her to bits and spoil her like crazy. One day at a time. It is so difficult and exhausting to know what the end of this story will be, but to still carry on with normal life. My biggest struggle now is trying not to think too much about how much I will miss her.

Someone asked us to please post a video of Amryn. I will try to get one together sometime today or tonight. Maybe one of her smiling or "playing" with Lydia.
In the meantime, some photos:



Naptime with Robyn (who is still suffering from a bad cold!!)


Chubby cheeks!


We discovered that Amryn loves to suck her thumb.. she can't get her hands to her mouth, however, so we have to hold it her little thumb in place and she happily sucks away! Notice the new cheek patch and tape? Nick and I did it ourselves, since no nurse wanted to peel the duoderm off for fear of skin breakdown. We tried it, and her skin was perfect underneath, so we just replaced the patch. It looks so much better than that rolling, yucky tape!


We had a Movie Night and all snuggled down to watch "Ratatouille" on the computer.





A Christmas gift from Robyn to Amryn... a soft bunny to hang on to.


Check out the long, pretty lashes!