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.

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.

False Accusations

It is now August and so much has happened in the last number of months.  I have updated as far as Gemma getting her shunt and will find time soon to continue with the blogs.  Before doing so there is something that was recently brought to our attention that we feel strongly about clearing up.

We were just informed now that eight months ago when we left the NICU someone had the misunderstanding that our family was going to get a camera to watch nurses in our home.  We don't know how this rumour started other than possibly overhearing us talk about getting a Baby Video Monitor.  The monitor we have only shows Gemma's face and the handheld device is for nurses to use at night for safety as Gemma cannot cry out loud.  We DO NOT have a video surveillance camera.

Apparently this 'rumour' has actually caused nurses not to want to work with us.  And also because of the concern of us having a blog that could potentially cause confidentiality issues.  This blog is about Gemma's journey to help other families and as you can see, does NOT slander anyone.

We were obviously really shocked and disappointed to hear there have been these rumours and that it has affected us from getting Childrens hospital nurses, that we have requested since being home.

If you read this and you were one of the nurses that heard these rumours we would appreciate you spreading the word that they weren't true, we have the utmost respect for all hospital nurses.

We would like to think that we have a really nice place to work, Gemma has a large, bright, happy room, complete with a nursing station, lamp, phone, computer with wireless internet and private washroom.  Gemma is the sweetest little girl, she is an absolute joy to be around and we hope that providing this clarification allows for us to have more nurses in the future.

Amanda, Charlie & Gemma

VP Shunt Surgery

Gemma is home and recovered well from her VP (Ventriculoperitoneal) Shunt surgery.  We were in hospital for about four days.  Since it was Gemma's actual birthday we had the music therapist came over before the surgery, along with our friends from Spiritual Care and we all sang Happy Birthday to her.  It was cute, we had a banner, fake candle and a present.  It helped lightened the heaviness of the day.

Gemma's surgery took a bit longer than expected, about 3-4 hours.  I didn't know what to expect when she came out, I had made the mistake of looking online at other procedures.  To our surprise the incision wasn't that bad and they didn't even shave her head.  Gemma was already acting like herself soon after and it was a big relief.  The only thing was that Gemma had a lot of bruising on her neck, and they had to put a 'cuffed' trach in during the procedure.  We believe the surgery and irritation caused some inflamation to her trachea because the next day we put her flex trach back in but there were some complications of random de-sats and bradycardic episodes.  A bronch was done and we noticed some occluding of skin at the bottom of the trach.  They decided to fit Gemma with a pediatric, regular Arcadia trach.  It was a huge disappointment as it took a really long time to get that other trach ordered for her with a special connector.  I spent the next few days more upset about the trach than the surgery because of the bulkiness and uncomfort it was causing for Gemma, though we were told it was 'best'.

Within an hour of getting home Gemma was so much happier, you could see she loved being back in her own room.

We are really glad that the surgery went well without complication, and hopefully soon we can resolve this trach.  We are just happy that our little girl is back home :-)

Here is a picture *but please note it may be graphic to some*

February 18th, 2011

Happy 1st Birthday my beautiful, sweet little Gemma. 

Last Saturday, February 12th we had a wonderful birthday party for Gemma surrounded by our friends and family.  Today is Gemma's actual birthday, February 18th, however it is also unfortunately the day that Gemma is scheduled to go in for her VP shunt surgery.

Due to Gemma's Hydrocephalus ('fluid on the brain') caused by her brain bleed at birth, it is necessary to insert a shunt system that will drain this fluid as Gemma's brain is unable to fully drain this fluid on its own. (I guess you can think of it as a bit of a blocked pipe).  Once someone with Hydrocephalus receives a shunt it is normally permanent as the brain 'gets used' to having the shunt in place to assist with the fluid. 

It is a very scary day for all of us but we have been told by everyone that it needs to be done so that Gemma doesn't continue to have intracranial pressure, which can be extremely serious, and that is likely causing her continued emesis and possible headaches. 

We wish our daughter a safe, speedy recovery.

Happy 1st Birthday Gemma!

Last year on February 18th, 2010 our lives changed forever.  It started out like any normal day, we got up for work that morning and I remember thinking how big I felt, like I was already 'full term' but still had two months to go.  Due to severe ligament pains I was looking forward to an early maternity leave in the next few weeks.  None of my pregnancy books could have prepared me for what was about to happen a few hours later.  I went to BC Womens for a check up, they knew right away something was wrong (I had Polyhydramnious) and 15 minutes later I was going in for an emergency cesarian.  I was in complete shock, I was 31 weeks pregnant and had no idea you could have a baby two months early.  There wasn't enough time for preperation so they put me under and I woke up unsure what had happened.  Moments later my husband appeared through the curtain and I asked him where our baby was, but he also didn't know and went to find out.  I lay there in shock, worried and my body shook due to the anesthetic.  They took us to a room in the NICU where our baby was laying unconscious and we were explained the details of her traumatic entrance into this world.  Our daughter was resuscitated and appeared to be born with some type of neuromuscular disorder. We had no idea anything was wrong with her in utero, only that 'clubfoot' was suspected.  During birth she endured femur fractures and was wearing a Pavlik harness, she was surrounded in wires and intubated.  We were told the words 'she might not be compatable with life' and it was hard to wrap our head around exactly what that meant.  We took everything day by day and our daughter continued to fight and make progress.  The names we had considered for her no longer suited her and we decided on 'Gemma' as she was our 'precious gem'.  Her middle names 'Violet' (the flower and colour of her new birth month) and Neselle (we came up with meaning 'miracle' - 'girl').  The previous blogs that I posted to this site in her first year of life were e-mails that I sent friends and family about her progress that I wanted to share with you. 

The first few months were extremely difficult, Gemma endured many complications.  Reading the board by the front desk helped give us hope and that is why this blog is there for all the families who need to hear what others went through and find that hope for themselves.  One thing that stood out for me that another mom wrote that their child had it as bad as it can get, reading everything they went through made me think that maybe my daughter could overcome as well.  Being in the NICU was the most difficult and trying time of our families lives and every day was filled with uncertainty.  We would have days of hope and then days of devistation, we never knew what direction we were headed and having a lot of opinions made it more complicated at times.  We eventually had to rely completely on our daughter and God, and put everything in their hands.  What really helped us was talking to families in similar situations, they had been there as well and lived it.  Also having primary nurses that knew our daughter, the changes they could see with her and could advocate for our family, they were our rock and support.  There was uncertainty for a long time and it took a long time for others to see what we had seen all along in Gemma.  Our daughter has what is considered to be a progressive disorder and with her being undiagnosed we can not predict her exact prognosis but no matter her journey we support her.  We listened to our insticts as parents and decided to give her a tracheostomy so that we could bring her home to take care of her and it was the best decision we ever made.  At the time everything was really scary to us, we didn't know what to expect.  As Gemma healed from her procedure things instantly changed, we were finally able to hold her without risk of extubation, we could see her face, we could walk her around and start giving her a life, most importantly she was so much more comfortable and happier. We were finally able to get training to prepare to go home, words we had longed to hear.  This seemed like an impossible goal those many months in the hospital.  We never knew if we could ever take our daughter home and lived in that fear each and every day for the first 7 months of complications, then recovery, then infections, then healing, then surgeries, procedures, agreements, disagreements, meetings, watching other families go home and also having other families lose their children.  It was heart breaking but we kept one thing in mind, we were once told to focus on our child amongst all the distraction and listen to what is she telling us.  It is hard to explain but we could always see hope in Gemma.  In December the happiest day of our lives happened and we welcomed our daughter home!  Gemma has been thriving and doing so well, she is such an amazing joy.  Life for our whole family, and most importantly for Gemma, is a million times better. 

This month we celebrate a day we never knew we would see, our daughters first birthday.  We invited all of our friends and family to celebrate it with us and it was such a wonderful day.  Thank you to all of you who joined us for such a joyous, memorable occassion! :-) 

Our local newspaper wrote an article about it:
http://www.bclocalnews.com/richmond_southdelta/richmondreview/news/116363354.html

January 2011

Gemma is settling in really well at home and enjoying her new room and surroundings.  Every day things feel a little bit easier and our confidence level increases. 

Gemma has had a few desats since being home requiring IPPV (using her resus. bagger) but luckily we seem to be sorting out what is triggering her.  It is scary having it happen at home but we know how to help her and just do it.

It is wonderful being able to have Gemma enjoy her room with all of her things, at the hospital we couldn't easily play with Gemma, especially on the floor or sit her in a comfortable chair.  At home we have a physio mat, a comfortable glider, a bouncy chair, toys and other things that she can enjoy. 

Gemma's birthday is coming up in February and we are looking forward to planning her birthday party!!

Home for Christmas

The first few days at home felt a bit overwhelming, we were actually HOME, it all started to sink in... and along with it came incredible joy and fear.  We no longer had things we became accustomed to, the constant stream of nurses, doctors and RT's that would frequent Gemma's room, supplies within fingers reach, knowing where everything was.  We were... on our own, not exactly but that is what it felt like.  After ten months the NICU had probably become this borderline unhealthy normalcy for us. 

Taking Gemma home was foreign, we were in a new world.  One of the biggest challenges was having a new team of people to work with, new nurses coming into our home, and a new pediatrician.  Everyone that we had known and depended for so long was no longer with us and we really missed our primaries.  The first while at home definately made us sleep deprived, worrying about every sound.
A few days into being home and we were amazed just how much more we were learning about Gemma, even from being in hospital from morning till night we still had to leave her there and not be there if she woke in the night or be there for her early morning physio.  Greeting her in the morning is one of the happiest moments for us being home, our baby was finally home with us after 307 days and we could see her anytime we want! We were... in charge of her care and finally really felt like her parents.

Soon after being home we even realized what was triggering Gemma's recent hospital de-sats.  It was so wonderful being even more in-tune with our daughters needs and knowing how to help her.

Christmas Eve approached a few days after we got home and it was so sureal that Christmas had arrived and that we would be spending it at home with Gemma.  We got up on Christmas morning, gave Gemmie some presents to open (more like look at and hold the wrapping paper but it was perfect).  Family came over in the afternoon and we brought Gemma out in her wheelchair/stroller in a beautiful Christmas dress, one of the first times dressing her up after being in sleepers most of her life.  We took pictures together and had a nice home-made meal, it was so wonderful after such a long time in the hospital and countless cafeteria meals, a day we had waited for a long time.

A Christmas wish come true!

December 2010 - Last month in the NICU

December would be the last month of Gemma's long 10 month stay in the hospital.

We had waited a very long time to receive something that NICU parents talked about frequently, 'blue bird' status.  When a picture of a little blue bird is placed at your child's bedside then it means that plans for discharge had begun.  Since Gemma's was such a special occassion the coordinator organized for one of our primary nurses (Laura) to give it to us, it was a very special moment.  We were so excited!

Once you have reached discharge status all of a sudden lights are green and it is go go go time! 

We frantically hurried along with the NICU staff to get preparations ready to go home.  Every day was filled with training, appointments, discussions, practice and checking off all of the requirements in order for Gemma to leave the hospital.  We were finally able to be trained how to do everything and even be able to take her out of the NICU for walks.  It was overwhelming and scary for us but exciting at the same time. 
One of our nurses came up with a cute idea to build a flower board that showed Charlie and my progress in our training and when the flowers were in full bloom it meant we were finished all of the steps we needed to take to care for Gemma at home.

Everything was happening so fast.. It was a bittersweet month, excited, nervous, scared.  So happy to go home, yet so hard to leave the comfort of all of the nurses, doctors and RT's right outside her door.  All of a sudden the weight of the responsibility was on our shoulders and panic started to set in a bit. 
Our first biggest challenge came with the 'weekend by parent', a chance for us to spend 48+ hours with Gemma, completely on our own, in a seperate part of the hospital, and no one to help us (unless we really need it).  Oh boy...  we had to plan and bring all our supplies, it was like hospital camping, we were nervous but it went really well, we even had a situation but it was a great learning experience and it was really empowering.
The following week the Red Cross put on a goodbye party, we sat in the conference room (ironically the place of many discussions about Gemma's future - wish we could have known then what we know now), as hospital staff came in to give us their best wishes, have some cake and watch a slide show of Gemma's journey.  It was always other friend's goodbye parties at the hospital and now it was finally ours!

On December 22nd, after 307 days in the NICU, one of the happiest days of our lives happened, a day we never knew would come, we welcomed our daughter Gemma home.  We thank everyone with all our hearts that supported us through our journey and helped making Gemma come home possible! 

November 2010 - Moving ahead

Everything is moving forward!  Gemma is recovering well with her new trach and she is handling position changes well.  Being ET tube free is allowing her to have more mobility, her physiotherapists are working with Gemma to sit her up supported, trying to encourage her to wiggle and lift her limbs.  A belt was made for Gemma to keep her trach centered for when she has cuddles or sitting in her tumbleform chair.  It is nice to see Gemma get to do things she couldn't do before!

Now that Gemma has had her trach surgery it means getting ready for nursing training to prepare us for going home!  Yes, those amazing words we longed to hear for many, many months!
Our Vancouver townhouse with stairs, stairs and more stairs was definately not going to be suitable for Gemma coming home with a special wheelchair so we had to sell and move, asap!

When it already seemed like a lot of adjustments were happening, we were thrown another curve ball when Charlie lost his position with Disney after five years.  His project was canceled, the whole team got laid off and then shortly after the entire Vancouver stuido shut down.  At first it seemed like the worst possible timing but then it occured to us that it was a blessing in disguise, it was the best possible timing!  Charlie was able to be around after the trach surgery, he would have time to do the nursing training that was provided during the day by the hopsital, he would be able to help sell our home and help us find a new place.
We lucked out selling our home and shortly after we found the perfect home for Gemma, a ground level home with lots of light, a big bright bedroom with a washroom for the nurses and a private garden.  We moved in November 22nd!

Getting Gemma home is becoming closer, we are moving ahead!