December 21, 2015 - January 7, 2016

The holidays were a busy time for us! Between continued trach training, family gatherings, lots of visitors, planning Anna's homecoming - we are happy things are slightly back to our regular routine now.

Kaelyn helping wipe Anna's "bubbles"

Anna has continued to flourish and is growing at a steady rate now! She is up to 8lbs 4oz. They have been doing some changes to her feedings, so timing is a bit easier for home. She is fed every 4 hours for an hour during the day and at night she is on a continuous slow feed. This is all by pump through her g-tube. 
About a week ago, the occupational therapist did try Anna on a bottle, but she was unable to swallow the added volume in her mouth. She does not have oral aversion, but struggles with swallowing. At this time we are just continuing with non-nutritive nursing (empty breast), a soother dipped in breastmilk, or sucking on her fingers, etc. It is important we keep up with putting very small amounts in her mouth, so she is used to different tastes, etc in her mouth. Once she is older, she may do better with solids, but we just do not know at this time. She will continue to get her nutrition through her g-tube.

The cardiologist has stopped her captopril and lasix, that she was taking for her PDA, to see if it was actually being effective. We will find out next week (or if she shows us sooner) if it was or not. It would be nice if it was doing nothing, as the side effect of coughing is a little irritating for Anna. Either way, they are just trying to wait until she is a little bigger before they close the PDA.

Anna was seen by a second orthopedic surgeon to give his opinion on her hip dislocations. The first surgeon's opinion was to leave her hips displaced as they are so badly displaced. The second surgeon decided to have a look at her actual hip joints when she comes in for her surgery at the beginning of March to untether her spinal cord. We find ourselves very torn over this issue and have to remember to hand it over to the Lord. That he has a plan for Anna even if it does not involve walking. Her hips do not cause her any pain right now, but if we did an intervention there is a chance that her hips could cause her ongoing pain.

We have continued on with our trach training and are feeling more and more confident about the care we have to provide. I am totally signed off on my trach skills and am able to take Anna for walks without an RT along. Ryan just has to do one more trach change (Saturday) and then he will be done as well. We continue to do 2 classes a week with our "home care team" to practice using the equipment we will have at home and do emergency scenario's.

First walk outside the NICU with no RT along today :)

Today we had a family meeting to plan for Anna's home coming. We are SO EXCITED to announce that Anna's planned discharge is Wednesday, January 20, DV. Less than 2 weeks away!! It seems a little surreal to actually be this close! I am afraid to believe it will actually happen. When you have had as many setbacks as we have, you have a hard time not counting on another one.

Her smile is SO close

Taking Anna home involves a number of pieces of equipment: a suction machine, an oximeter (saturation monitor), an airvo (heated humidifier), a feeding pump, and all the small things that come along with these. We will have a nurse in our home for about 40 hours a week, to help with caring for Anna. At first, we will use them for nights, so we can get some sleep. We will be visited at home by an occupational therapist and a dietitian. We will have visits to make to her pediatrician in Guelph and to the numerous clinics at Mac (Ophthalmology, Cardiology, Nephralogy, Orthopaedics, Neurology, Pulmonology, ENT, Growth and Development and maybe a couple more ;)

My Primary Nurse, Sherry doing her charting while snuggling Anna

Anna was wearing her Doctor Anna onesie

It's a little overwhelming to list all of that! But we can't wait to get to spend time altogether at home as a family! Even if I am driving to Mac every other day - that is still an improvement ;) We are so thankful to the Lord for his continued care of Anna. That she has continued to grow and develop to the point that we can take her home! We ask for your continued prayers as we prepare to bring Anna home! That the transition for her and our other kiddos goes smoothly.

 Sing to the Lord, all the earth! Tell of his salvation from day to day. Declare his glory among the nations, his marvelous works among all the peoples! For great is the Lord, and greatly to be praised, and he is to be feared above all gods. 1 Chronicles 16: 23-25