January 8 - 22, 2015

Since the last blog post, we were very busy with plans to bring Anna home!

Not only did we have trach training classes twice a week, but we were also working on renovating our kitchen and Anna's room. It was a little crazy here with just a little over 2 weeks left to prepare for our girl's homecoming!

Anna did not have a whole lot going on during this time. She just continued to charm all the nurses into cuddling her, talking to her, or exercising her. She has quite the crew of regular nurses that take of her and of course, since we've been there this long, she knows all the cleaners, doctors, RT's, PT's, dieticians, etc. 

Yvonne and Anna - another primary nurse

Cardiology did decide to stop her medications for her heart, just to see if they were actually being effective for her or if they were needless meds. Within a couple of days, Anna started to have deep and long desaturations, so they quickly restarted the meds. 

They also did another small round of antibiotics as they found a bit of a bug when they sent some secretions to be cultured. They wouldn't have treated it if she hadn't been so close to heading home, but just wanted to be on the safe side.

Trach training classes became more than just knowing the skills, but testing them in emergency scenario situations. Anna's airway is so sensitive and small, that we need to be prepared if anything were to happen. We also learned how to use all of the equipment we will have at home.

In the midst of all this busy-ness, little Miss Kae turned 2!! I can tell already that this little princess will be my big helper with Anna. She is all about baby's, etc.

Started her birthday off with a pee on the potty!

(Time to train her once we are home!)

This past weekend we did "Care by Parent" for 2 nights at McMaster. Basically a dry-run to make sure we are comfortable looking after her, with lots of helpful personnel right there if we need them. This was a nice break from our craziness of trying to get everything ready for Anna. We were able to just sit back and enjoy her! 

Anna was able to go for her first coffee date with Grandpa & Grandma visiting! She also met lots of her cousins on her walks outside the unit!

On Tuesday at about 5 pm - we got the very difficult news that they didn't think Anna was ready to come home yet on Wednesday. The monitor we will use at home (and used in care by parent) is a more sensitive monitor and it was catching more desaturation episodes. They were not comfortable sending her home until they know why she is having these spells still. This was such a let down after doing so much preparation and looking forward to being home together as a family! It has been a trying week emotionally - as I carry on travelling back and forth to McMaster.

To figure out why she is having these spells - they put up a couple of video camera's. One taping Anna and one taping 2 monitors - the hospital one and our home monitor. They were able to review the data last night and there initial thoughts are that they were obstructive. So they brought ENT up today to scope down her trach to see how things look there. She still had posterior tracheal malatia below the trach. So they put in a 3.5 Peds trach, instead of a 3.5 Neo trach; which is about 6mm longer. We are hoping and praying that this fixes these episodes!! ENT said there is still a little bit of malatia below that longer trach, but hopefully this one is far enough down that it is bypassing enough of it.

Unless her spells are totally gone with this trach change, they are planning on sending Anna for a sleep study at Sick Kids in Toronto. From this, they will find out if her spells are being caused centrally (sleep apnea, etc).

So we don't have a new time line as of yet for going home :( Not until they are sure why she was having these spells and what they can do to fix it.

Please keep praying for us! This week has been really tough and frustrating! Pray that we are given the strength and patience we need to continue on. Pray that our little Anna won't have any more desaturation episodes, so she can come home soon!

Answer me when I call, O God of my righteousness!You have ggiven me relief when I was in distress. Be gracious to me and hear my prayer! Psalm 4:1

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