Gemma's 2nd Christmas at Home!

As the holidays approached we were so excited to celebrate Gemma's 2nd Christmas and her 1 year anniversary coming home!

December was a busy month...

We were invited to an IDP (Infant Development) party in Richmond where special needs children could come together with their families to enjoy face painting, crafts, snacks and meet Santa.  It was wonderful to take Gemma and meet other families.  Cousin Sydney and Great Grandma joined us for this fun day.

Our Santa photo didn't turn out very well so we decided to take Gemma to the mall to get one done.  It was exciting to take her and yet stressful at the same time as transfering Gemma can be a difficult task.  Part of the challenge was being in such a puplic place, you never quite get used to the stares.   The trip however was a success, Gemma loved Santa, he was so friendly and accomodating.  It meant a lot to us to have Gemma go to the mall like a 'normal' child to get her photo taken. 
I must say though, it was a bit disappointing that the set up wasn't wheelchair friendly! 

We had a Christmas gathering at our home to celebrate Gemma's anniversary.  We were surrounded by our friends and family in support of another milestone.  It has been an amazing year having Gemma home, we love her so much!

As Christmas approached Gemma got ill and ended up in the emergency room a few times.  The doctor discharged us on Christmas Eve and she was able to spend her 2nd Christmas at home.

 Unfortunately within a few days Gemma was admitted for three weeks due to chest secretions from a virus that caused a collapse in her lower left lung.  You start to think Gemma is invinsible and then you quickly realize that she can be fragile.  

Fall 2011

We were sad to see the Summer go but also relieved at the thought of Fall, the rain and humidity that would help Gemma's secretions and hopefully less chest pluggings!

One warm, September day we celebrated Charlie's birthday by taking Gemma to the park to have a picnic.  We played on the picnic blanket, had some food and enjoyed the warm, peaceful early evening together as a family.  It was really special and we knew it was probably the last time out on the park grass for the rest of the year. 

The next week Gemma went in for what we hope to be her last (5th) surgery to get her heel cords released.  We struggled with the decision but knew that it was the only way for Gemma to be able to eventually be placed in a standing frame that would develop her hips and spine.  Without that development she would get scoliosis and be in pain.  The procedure went better than expected and Gemma came out in cute, bright neon pink casts.  She adapted really well and once they were taken off we were amazed that she was already pushing off the flat of her foot.  What a huge difference, we are so glad it went well!

October came and we had a really fun Halloween party.  We were the 'ladybug family' and our house was decorated inside and out, we had Halloween-themed foods & drinks and a caramel apple decorating room.  We took all the kids around our neighbourhood for Gemma's first trick-or-treating out of the hospital.  It was spoook-tacular!

Today we delivered gifts, letters and chocolates to the NICU families & staff

It has been a while since I updated the blog but I wanted to write a quick note to those who might be signing on to see our blog (which we posted inside the books that we delievered to all the NICU families today).

Our daughter Gemma came home a year ago this December after spending 10 months at BC Womens/Childrens NICU.  In honour of celebrating her anniversary since coming home we decided to raise funds and with the help of friends, family and past NICU moms and we were able to provide 60 books, letters and chocolates for all of the families and chocolates for the staff.  We choose the book 'Are you my Mother?' because it is our favourite book that we started reading to Gemma when she was in hospital.  It is a very fitting book as it is about a bird that is born and tries to find his mother, he is surrounded by other animals and is confused who his mother is but when he finds her he knows its her.  In the hospital babies are surrounded by nurses, doctors, RTs, and many specialists but the babies ultimately know who their parents are.  Being at your babies side they feel your presense and hear your familiar voice.  We hope you enjoy reading this book to your little one as we did with Gemma.

We know how difficult it is to be in the hospital, especially over holidays, so we hope this brings you a bit of cheer.  Our thoughts and prayers are with you and your baby, we wish you health, happiness and blessings through the new year.

Amanda, Charlie & Gemma Bostik

Summer 2011

June was the beginning of four more emergency episodes to come over the Summer.  Just as soon as the hospital thought they had figured out what was happening with Gemma's chest plugging situations, we would go home and it would happen again within a few weeks.  During the last emergency my sister and I had to do a trach change in the middle of an emergency, Gemma's airway had blocked off so she was having an asphyxia episode, turned blue and losing consciousness.  It was the second of the most frightening emergencies we had with her.  After she was last admitted to the hospital for a few days it was determined that her trach should be upsized.  It appeared to do the trick because *knock on wood* we haven't had an emergency since.  Because of these emergencies we decided that it would be in Gemma's best interest to have two trained individuals with her at all times.

The emergencies definately caused us a lot of stress and insomnia.  Most of Gemma's emergencies had happened during the night so I would jump up to the sound of alarms, run into the room, and all of a sudden be in the middle of an emergency situation half awake but running on adrenaline.  For a few months I was so exhausted but would dread falling asleep, to the point where I would even have to take a nap in the day because I was running on such little sleep.  One night I came into the room when there fortunately wasn't an emergency, I collapsed on the floor, completely blacked out and was woken by the nurse shaking me.

What was supposed to be a fun Summer ended up being a bit of a stressful one but we tried not to let that get in the way of our enjoyment with Gemma.  Another challenge came with having to limit her exposure to the heat and dry air, which meant going outside in the mornings and late afternoons/evenings.  We would take her for nice walks around the neighbourhood, have picnics under a shady tree in the park, play in her pool, and enjoy sitting in her backyard surrounded by flowers and the sound of water from the fountains that Charlie installed.  We had visitors, we had birthdays, we made the most of it.

As the Fall started to approach it became a very bitter sweet time, a bit of a relief knowing that the moist air was coming and would help with Gemma's secretions, but also knowing that cabin fever would soon be creeping in.  Winter was around the corner and this meant building a protective bubble over Gemma.

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.