What a Winter!

After exactly a year of being home without sickness, except for her emergency plugging episodes last Summer (mostly mechanical and dry weather), Gemma came down with a series of illnesses causing chest congestion and partial lung collapses. 

To our lack of knowledge we always ended up being one step behind... just as we would get advice on helping her with one thing we could have been doing another... from starting night physio to nebulizers.  Up until this 'cold' we didn't even know what a nebulizer was.  The first hospital admission lasted three weeks, then shortly after Gemma was discharged she was admitted again for another three weeks, and then again for a few days, spanning from December until April.  What a Winter!

To us it was a complete shock, we had heard of other similar children with respiratory complications needing hospital admission over the dreaded 'Winter' months but Gemma never needed this... until December.  It would only last a few days.. maybe a week at most right?  nope!  Weeks! they would say,  maybe months!  Are you kidding we thought??  no way!  Yup..  weeks...  on and off those weeks turned into months. 

One respirologist said to us that her lungs would 'continue to get worse'....  now?... years from now?  we don't know.

One doc said 'Maybe in the Spring/Summer her lungs will 'clear up' and she will do well again'..   we started to wonder when that would happen, we just wanted our little girl back to 'normal', then one day Gemma just 'cleared up'... secretions slowed down.. sats came up.  Yay, finally!!  Thank you God.

I never would have imagined, even though I preached it to everyone that 'a simple cold can turn into something very serious for 'these' children'... make sure to wash well..  Have you 'Mirco-sanned' yet?

Sometimes people say things like 'you need to get her out more'... people don't really understand the balance that you need to always find between quality of life and protection of life.  Of course we want our daughter to 'enjoy life', it is all a balance, finding things she would like to do and what will be safe for her.  Now that she is getting older we can find more things that she can experience.

I really hope that Gemma will continue to do well and we can be a lot more prepared for next Winter.

Gemma's hospital bed

Gemma getting sick on her Birthday

 

Gemma figuring out how to take off her AFO's

Happy 2nd Birthday Gemma!

Gemma's birthday was over a month in the planning!  Such an exciting milestone deserved a big celebration!

Over 40 people came from near and far to celebrate Gemma's 2nd Birthday on February 18th, 2012.  It was wonderful being able to share in her special day with our close family and friends. 

Gemma's party was so much fun organizing, it was so special for me to do this for Gemma, I loved planning all of the little details!

Unfortunately on the day of Gemma's birthday she came down with a sickness.  It was so disheartening to have to keep Gemma isolated from everyone and not be able to have our visitors spend time with her.  Gemma made an appearance for her cake and a round of 'Happy Birthday to You'.  The next day when she was feeling better we were able to take some pictures.

Looking back over the last two years it is amazing how far Gemma has come.  This little girl was brought into this world suddenly, two months premature, she endured resuscitation, femur fractures and a brain bleed at birth.  This child wasn't considered 'compatable with life'.  This child had no spontaneous movement, including severely tightened legs after her fractures healed, and developed numerous life threatening conditions in her first few months of life.  This child was said not to have 'purposeful movement'.  This child spent 10 months of uncertainty in the Neonatal Intensive Care Unit where many didn't believe in her or felt she would live a life of severe hardship based on opinion and charts.  Behind that yellow door of the hospital room where Gemma spent many months, we were with her watching her grow and thrive.  We could see the fight she had in her and the brightness in her eyes.  Many people who had a negative opinion of her rarely, if never, saw her.  Gemma overcame many obstacles and five surgeries, including a muscle biopsy, g-tube, tracheostomy, vp shunt and heel release.  This same child now has full anti-gravity movement in all four limbs, she can put her toes in her mouth, has two handed play, problem solving skills, communication abilities such as sign language and understanding words, fine motor skills, matches shapes, pulls objects apart and puts them back together, remembers songs and books, makes choices, and has the most amazing little personality!   We always stand by our daughter's side with all our love and support, we are so grateful to be a part of her journey.   We love you Gemma!

January 2012

Gemma was discharged from the hospital in mid January. 

It was an eye opener to us to see how a cold could end up causing Gemma so many problems.  Basically what happened was that the secretions and gunk pooling down in her lower lungs were sitting down there and not able to come up.  This also caused her not to be properly ventilated as the air wasn't able to fully expand her chest, and hence causing a collapse in her lower left lung. 

Within a few hours of being admitted to Children's Gemma was already on oxygen, they had to increase her ventilation settings, as well as her doses of nebulizers, and provide her with aggressive chest physio.  Within a week Gemma cleared up but unfortunately began vomitting which caused her to aspirate milk into her lungs.

The aspiration was really surprising considering that we hadn't seen one before.  It took everything out of Gemma, she was lathargic for a few days and wasn't herself at all.  Her heart rate and resp rate increased drastically and stayed high for a week.  I kept being told not to 'watch her numbers' but I couldn't help it, I knew it was a sign something was wrong.  Fortunately within a few days Gemma started looking more herself and then it took another week before she was back to 'baseline' in order to go home. 

I had been lecturing everyone for a year about hand washing and being careful about getting sick but didn't really know what exactly I was protecting Gemma from until this Winter.  It was really difficult going from having a child that looked so well to being really sick. 

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.