The scariest day of my life

The Summer was approaching and we were getting excited about all the things that were were looking forward to doing with Gemma.  We were feeling so much more confident and excited to take Gemma out after having a solid number of months without complications. 

That all changed on June 22nd at 1pm.

I was on my own that day but luckily my grandma had stopped over for a visit.  She was giving Gemma a cuddle and I was in the kitchen making us lunch.  For the first time since being in hospital Gemma had developed a GI infection, however being g-tube fed we could keep her hydrated and didn't have any reason for concern.  We had noticed that Gemma's sats had been sitting a little lower than normal the past few days but didn't think too much of it.  As I came over to see if Gemma had woken up I noticed she was looking in destress.  She can't cry out and was facing away from my grandma so she hadn't noticed that something was wrong.  The oximeter began to alarm as I started a trach suction.  Gemma wasn't on the best angle so I moved her onto the couch to have better access and began working on her to clear what appeared to be a chest plugging situation.  I instructed my grandma to call 911.  After a few attempts of clearing the plug I realized that I was missing saline from my emergency bag and asked my grandma to run to Gemma's room to get some, I tried to explain where it was but unfortunately she couldn't find it and we were running out of time.  I remained calm and continued to try and help Gemma but I knew that I needed saline and inside the panick was setting in, an overwhelming sense of helplessness came over me from not having one simple thing that could help save her life.  All I could think was Dear God, please let my daughter be ok.  Gemma turned extremely pale, a ghostly white, and I had to do something quick.  I had my grandma give IPPV (resusciation bagging) to my daughter as I frantically ran down the hall to grab the saline.  Every foot step was a moment less that she had to fight.  Upon my return Gemma had lost consciousness, her sats were very low and her heart rate started to drop off.  I immediately began to instill, suction and bag but doing this on my own proved to be quite difficult and I feared that any moment I would lose my daughter.  All of a sudden I got the plug up, Gemma's eyes shot open and I was filled with relief.  I continued helping her as the paramedics came in, they gave her some oxygen and her colour started coming back.  They couldn't believe that I wasn't crying or freaking out but they didn't realize I had spent 307 days in the NICU surrounded by chaos, emergencies, and anxiety that had managed to numb me and prepare me for what had happened.  I had to set aside being Gemma's mother and save her. 

It was still the scariest day of my life.

I went with Gemma in the ambulance to BC Childrens hospital where she was admitted for observation.  Despite our efforts Gemma had become a bit dehydrated, which would have caused her chest secretions to thicken and plug.  She also required a higher level of humidity and they put her on a nebulizer that would help keep secretions loose over the Summer.  We learned a lot of valuable lessons that day which have better prepared and remind us that we truly can't take anything for granted. 

May 2011

Gem is continuing to do really well at home and making progress doing things we were told she wouldn't do. 

Taylor, one of her NICU buddies, came over with his mom Natasha to visit from Penticton, it is nice seeing them when they are down for clinics at Childrens hospital.  It is cute to see how intrigued Gemma gets with other little people.  It is nice relating to other parents who know what it is like to have a complex child and all the medical lingo.  One of the only perks of being in the NICU so long, developing life long friendships.

On the 8th Gemma surprised me with a cute Mothers Day card.  Last year Gem was in hospital so we didn't feel like celebrating, this felt like the first real Mothers Day, having my little girl at home.  It was really special :)

A few of Gemma's hospital primaries (Laura & Doug) came to visit this month, it was really great to have them come over and see Gemma at home.  We are so grateful for everything that our primaries did for us in hospital, helping, supporting and advocating for us for many months.  We put together a photobook of Gem's hospital journey to give them.

Gemma has been sitting up more in her 'high-low' base since having some adjustments made and a new tray added.  And her custom foamed tumbleform chair, in purple of course.

Now that Spring is here we have been working on creating 'Gemma's Garden', a private oasis for us to enjoy with her over the Summer.  There is a cement walkway that is perfect to wheel her around on and we plan on having a ramp installed and doing some gardening in the back.  We are going to put in a tent/gazebo with some lawn furniture, some bird feeders and install some fountains.  We look forward to it. 

April 2011

Gemma has had another really good month with no issues, things are going so much better than we thought they would, especially with Charlie going back to work, but we have settled into a good routine.  The weather is getting nicer, we are going out for more walks and looking forward to Summer. 

This month our friend Marie (Josiah's mom) came to visit with her daughter Joelle, and it was Gemma's first play date.  It was great to visit with them and see Gemma interact with another baby, something she hasn't been able to do after spending most of a year in hospital. 

On the 25th my family came over for Easter dinner and Charlie baked a bunny cake, which sort of looks like half pig but he gets credit for the attempt.  Gemma and her cousin Sydney were cute in matching purple plaid dresses. 

We are still visiting Childrens hospital at least every week or two, so many clinics!  We took Gemma in for her Ophthamology appointment and she was seen by two specialists.  We were excited to hear that Gemma's eyes were advanced for her age, with having a muscular disorder she relies on her eyes to explore and communicate, therefore have developed to that of a 2-3 year old.  This good news was followed by some not so good news, that Gemma has a condition where her eyes turn in and would need to wear glasses to prevent them from becoming cross eyed.  That very afternoon she was being fitted for glasses.  We must admit the glasses are cute but quickly became a huge pain.  It is very challenging to keep glasses on a one year old, even with a muscular disorder she is already learning how to get them off.

March 2011

Gem has recovered from her VP shunt and things are going well.  Her emesis has completely stopped, which not only makes things so much nicer for Gemma but also that it significantly reduces her risk of aspirating.

Spring has arrived and the weather is much nicer.  We have taken Gemma for her first walk around our new neighbourhood and it was really nice getting her outside.  We found a shortcut to a park just down the street from our home and it is on the grounds of the elementary school I used to go to in grade 2.  How much smaller it seems!

It is a quiet, peaceful neighbourhood, a lot different than what we were used to in Vancouver. 

Gemma has popped out four teeth now, two on the top and two on the bottom.  So cute!

Gem has had another stable month and we are feeling a lot more comfortable with her cares.  It is so wonderful having her at home and having the shunt surgery behind us.