November 5-10, 2015

They continued to wean the peep on Anna's CPAP on Thursday. She went down to a peep of 4. She was tolerating it okay, so they plan to try decrease it again. She also got her first immunization! Ouch!

On Friday morning when I came in they had her up to a peep of 5.5 as she was starting to have more and more desating spells and showing work of breathing. I was giving her a snuggle and noticing that she was very uncomfortable and seemed to be fighting to get air in. The Respiratory therapist came and assessed her and agreed with me. She put her up to a peep of 7 and gave her a little oxygen. This worked and she settled out to sleep and her colour improved drastically. Anna is showing us more and more that her airway is likely a problem. ENT (Ears, nose & throat) came and did another scope up to her vocal cords. It showed that she may have some reflux, but no other issues.
Friday was a hard day for me (even though it was my birthday!) Emotions from all that we have learned this week caught up to me. I had a good chat with our social worker and have a few primary nurses assigned to Anna now (as that was a large source of frustration this past week.) She is 2 months old!!

Ryan and I enjoyed snuggling with Anna on Saturday and Sunday. She was content and comfortable, which was nice to see after a few hard days for her. They were able to wean her down to a peep of 6, although she is still needing oxygen at times.

Monday was like another weekend day at the hospital. It was a fake "stat" holiday, so there was nothing extra happening at the hospital. I was able to give Anna a bath in the afternoon. She is now up to 2554g (5lbs 10oz)!! No change was made to her settings on CPAP as her breathing does not seem to be improving. She is still needing some O2 and desating fairly regularly.

Anna's regular team was all back on Tuesday, which is great as they are the ones who have been following her since the beginning. They would like to go ahead and do a Rigid Bronch Scope. This will involve Anna going down to the OR and being sedated, so they can have a look at the area below her vocal cords (larynx). They are arranging a meeting with the team, ENT and us, so we can fully understand what this could mean. They do not like to send baby's down to the OR often, so they try to do anything needed when they do. They plan on putting a G tube into Anna's stomach for her feeds, since slow growth is going to be an ongoing issue with her. It is also possible, that if her airway is compromised that they will put in a trach.

In the past few weeks, I have met quite a number of people with children who have genetic disorders. I have seen children with trach's and g-tubes. Talked to parents of children with trach's and/or g-tubes. I see the Lord's hand in all this. Seeing and talking about it with other parents makes it a little less scary! We tend to be afraid of the unknown and the Lord blessed us by having these people cross our path.

Please continue to pray for Anna's doctors as they decide what is the right plan for her. Pray for us as we will soon have a meeting to learn more about these new devices that Anna may need. And of course, continue to pray for Anna, that she may improve in her health, so we can bring her home with us soon.

For the Lord will not cast off forever, but, though he cause grief, he will have compassion according to the abundance of his steadfast love; for he does not afflict from his heart or grieve the children of men. 

Lamentations 3:31-33