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!

October 2010 - Gemma's Tracheostomy, a new beginning

There were many times that we had said 'if' Gemma gets a trach, it took a long time to commit to the possibility of it becoming a reality.  We were put in contact with another family, Marie & Andrew Haak who went down a similar path with their son Josiah who had a rare disorder, he passed away at two and half years old and we knew that we needed to speak to them for advice about our daughter.  We needed to understand what they experienced and what advice they could give us about moving forward with Gemma's care.  They answered all our questions and put our minds at ease, it was a call we were so scared to make but they comforted our fears and put everything into perspective, we will be forever grateful for their advice, support and friendship.

After weeks of having the trach surgery postponed due to first the surgeon having to cancel and then having to cancel because Gemma got sick, the date finally arrived on October 8th, 2010.

We didn't know what to expect as we wheeled Gemma down the long corridor to the OR.  My heart was racing, fear swept over my body but this day also meant moving forward, to give Gemma a chance at a future. 

After a few hours of pacing around the hospital Gemma was ready to be picked up.  Luckily one of our primary nurses was on that day so we walked down to escort Gemma back to her room.  Gemma came out of the OR very swollen, sedated and under full body paralysis.  This was the beginning of a very difficult week ahead.

Luckily I did some pre-op research and spoke to families on a trach forum about what to expect but it didn't quite prepare me for how hard those next few days would be.  Gemma had to lay in an open-top incubator under overhead lights, naked and not able to even move her eyes and it felt like she was in a coma like state for four days.

After Gemma was weaned off we noticed that a huge bed sore had formed on the back of her head.  This was caused by her not moving for days and she was also very swollen from fluid retention.  Any position change with the new trach would cause Gemma to shoot into desaturation episodes.

It was a difficult few weeks but bit by bit Gemma was healing and after her first trach change things improved.  It was a very hard adjustment but we know we made the right decision and we can finally see our beautiful daughter's face!

September 17th, 2010

Hi everyone, 

It is hard to believe it is mid September, the Summer came and went so fast, though I guess for us the hospital has no seasons.  What a busy month, we celebrated Charlie's birthday with Gemma in her room with some cake and party hats last Sunday, this Saturday Gemma turns 7 months old! and next Sunday I look forward to turning the big 30 with my daughter, she will get to have three parties in a row!

I am happy to report that Gemma has continued to do well over the last month, she has been really stable and all of her 'numbers' (ventilation, saturation, heart rate...etc) have been really good.  Gemma has had almost two solid months since her collapses and it has been absolutely wonderful having so many great days with her, seeing her wake up smiling, spending the day interacting with her on the 'big bed', playing, having her sit in a chair, giving her baths and having a lot of quality time together.  There were times when we would have to worry about Gemma's oxygen saturation, high heart rate, large amounts of secretions and other problems, so it is really nice having her where she is at now.

Over the last month it has been neat to see Gemma doing new things, we were once told that she would only have reflex and not doing anything of purpose, but she proved them wrong now she grabs at her toys and textured books.  She shows more expression, rubs her eyes when she is tired, smiles and scrunches her nose and interacts more. 

As Gemma has continued to do well and make progress it appears as though many negative medical opinions have changed as well.  Everything has shifted from Gemma's uncertainty and talk of discontinuing care to talk of giving Gemma a tracheostomy so that she can have quality time at home.  A few meetings ago giving Gemma a tracheostomy was presented but we weren't sure if was an official option.  We were asked to investigate the possibility of going that path by speaking with other families and learning about the care involved.  As time went on the possibility turned into more of a reality and this past Tuesday Charlie and I sat down with a head Neonatologist to inform him that we want to proceed as it is the only option we see feasible.  Gemma can't stay on the ET tube forever, she is growing, grabbing more and risk of extubation increases daily. 

The Neonatologist is on board as our advocate and wants to speak to other doctors to make sure that there is a mutual agreement.  In the last few days things have been moving forward faster than we expected, a process that we were told could take many months but to our surprise a doctor from ENT came to do a consultation on Gemma today and told us that surgery could be as early as next week!

There is still a lot that needs to be organized prior to the procedure, and if/when it happens there would also be the procedure of a g-tube, many weeks of recovery, nursing training for Charlie and I, organization of home ventilation (as Gemma will require 24/7 care where we she will need nurses in our home in the evening). We will probably need to move into a bigger place that is more practical.  We are looking at at least two months before the possibility of taking her home.  It is a very exciting and scary position to be in but we believe that we are making the right choice, Gemma will determine her path and we will support her in her journey.

Some of you may be wondering what happened with the ventricles in her brain.  Gemma has been having head ultrasounds every week and out of the last five ultrasounds only one showed a slight increase in her ventricle size.  The neurosurgeons have seen her twice and don't want to proceed with a shunt at this time.  We are hoping and praying that her ventricles are able to drain properly on their own so that she can avoid having the procedure done.

There is a lot going on at this time but we hope and pray that everything goes well.  We will keep you posted and ask for you to keep Gemma in your prayers.

Thank you,
Love Amanda, Charlie & Gemma 

Gemma's Journey [HD]

Today Gemma is 200 days old!
Here is a video of her journey since birth.

Gemma's Journey [HD]

NICU Fundraiser

Last week I started a fundraiser towards BC Women's NICU (Neonatal Intensive Care Unit), where my daughter Gemma has been for six months since birth.  As you may not know the NICU is a part of BC Women's Hospital and not BC Childrens, even though the building is connected they are a seperate foundation.  Most donations go towards the Childrens hospital so the Womens side (NICU) has less funding.

I would like to thank those of you helping us with our fundraiser.  I have been touched by so many people; friends, strangers, distant reletives, NICU parents... people that barely know us who are trying to support our cause. I would also like to thank my mom's work (Save-On-Foods) who has organized two 'Spin for Kids' events where they have donated 100% of the proceeds ($1100) towards our fundraiser.

If you are interested in helping please e-mail me at cabostik@hotmail.com with your address and I will mail you a stamped envelope.

Thank you everyone for all of your support! 

Love Amanda, Charlie & Gemma :)

August 21st, 2010

Hi everyone,

Gemma is 6 months old (4 months corrected) and weighs over 13lbs.

After the last update Gemma had a series of lung collapses so we treated her with IV antibiotics in case she was developing pneumonia. One of the doctors suspected that it was her 'underlying condition getting worse' and that she was outgrowing her strength. The collapses went back and forth within a two week period, clearing up too quickly to be an infection. We braced for the worst but it all of a sudden went away and she has done extremely well since then.

We got the results back of Gemma's muscle biopsy. The results showed very little muscle, it was described as fatty tissue with strands of muscle fiber and this would be in keeping with an end-of-stage muscle deterioration process. They were unable to do any testing with the sample due to the lack of muscle and a diagnosis wasn't found. It is unknown how Gemma appears to be getting stronger and having more movement with such little muscle!  (they said perhaps she has more muscle in other locations of her body).

After the scare with her collapses I was able to convince the hospital to provide us with a bed to bring Gemma out on so that we could interact with her better, cuddle her and help with her physio. We also got a tumbleform chair for her to sit up in for her to have more head movement and look around. After a lot of convincing we were able to organize with the NICU, PICU and management an unprecedented trip outside with Gemma on a portable ventilator to the adjacent courtyard! It was such an enjoyable experience for Gemma to feel the sun and breeze, and to listen to birds chirping.

Gemma has been doing really well, very active and alert the whole day, having more movement and interaction. She has been smiling, scrinching her nose, turning her head, rubbing her eyes when she is tired, gripping and swatting at her toys and developing more and more of a personality every day. We have been having a lot of wonderful quality time together.

In the past couple of meetings we have been discussing what our options are and what the next step should be in Gemma's care. We are limited with options as Gemma can't remain in the NICU with an ET tube (tube connected to the ventilator that goes down her mouth and throat). It is becoming a bit dangerous as Gemma likes to hold on to her tubes and as she grows there is more risk of accidental extubations.

Some of the specialists worry that Gemma will lead a short and difficult life, and have therefore encouraged 'end of life' care. We have stressed that it is something we can't do at this time because we see her progress everyday and know that she isn't at that stage. The neonatologists and nurses support whatever path we want to pursue as they see the value in bringing Gemma home and doing what is best for our family. We are faced with very challenging decisions as no matter what path we take it requires a decision and intervention.

If we move forward then it could mean giving Gemma a tracheostomy (a permanent airway that requires surgery), and g-tube, and either remain in hospital or to take her home. We have been in contact with other families who have been in similar situations to learn more about what life is like for their child and family at home with a trach and all of the care that is involved. All situations are different so it is hard figuring out what it would mean for Gemma with all of her conditions but we are in the process of learning as much as possible before making a decision.

In the middle of trying to sort things out Gemma has of course presented herself with another condition that there is concern about. The ventricles in her brain have been increasing in size and a neurosurgeon came to evaluate her. She appears to have ex-vacuo hydrocephalus, the CSF (cerebral spinal fluid) is enlarging the ventricles as the brain is not growing at a normal rate, this normally regulates but sometimes there is a bit of a blockage (caused by birth trauma). If the fluid doesn't drain normally then it enlarges the ventricles, which enlarge the head. Babies heads are not fully formed so there is room for expansion but it can still be dangerous. If the ventricles continue to enlarge then they want to consider giving Gemma a 'shunt' that would be inserted semi-permanently inside the head and drain to her stomach.

We are keeping an eye on things over the next while to decide how it is best to proceed.

Thank you for keeping us in your thoughts and prayers,
Love Amanda, Charlie & Gemma