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




July 17th, 2010

 

Gemma is 5 months old and
weighs 10lbs 6oz.

In the last update Gemma had an accidental extubation and we felt that her new tube was causing her irritation and secretions. She had changed so much and this continued for a few weeks, where she was fussing and tiring out. Then a week ago she had another accidental extubation but right after Gemma seemed to be doing much better! so we think our suspicion of the tube was correct. None of the RT's agreed but it was too coincidental.

Gemma has had a good week of being a lot more awake, alert and content.

On July 14th we had Gemma baptised.  The service was performed in her room at the hospital with Charlie, my mom, dad, sister, grandma and our chaplain friend Philip. Gemma wore the dress that both my sister, my niece, nephew and myself wore, which was from my great grandma. It was a nice occasion and we were even presented with a baptism certificate and candle.

The next day on July 15th (also our wedding anniversary) there was an opening for Gemma to go in for a muscle biopsy, we were hoping to get more information before making a decision but the next available date wasn't until September. We went ahead with the procedure and Gemma went to the OR to have a section of her muscle removed for testing. It was a difficult decision but it is the only way that we are going to find out more information about her condition.

Gemma has recovered quite well and we are hoping and praying that something positive can come out of it so that we can have some hope for her future. The neurologist believes that the prognosis will remain the same (that her muscles will weaken over time) however if the muscle is different that they suspect then it could alter the prognosis. After the biopsy we were told that Gemma didn't have very much muscle but they should have enough and we should know some results within a few weeks.
It has been an exhausting rollercoaster for us not knowing what the future holds for Gemma.

Thank you for all of your thoughts and prayers,
Love Amanda, Charlie & Gemma

July 3rd, 2010

Hi everyone,

Gemma is now four and a half months old and weighs over ten pounds.

A few weeks ago we had Gemma on another ventilation weaning plan and she was able to be weaned to minimal settings on the ventilator so we extubated her and put her onto a new type of machine using a face mask. We were hoping she wold be successful but unfortunately she failed after a few hours and had to be reintubated. We are not sure why she failed but the new machine is built for adults and there isn't a version for infants that can support her properly.

Gemma had been having a good five weeks of being alert and active throughout the day and having more movement, having good oxygen saturaion of her blood, and not requiring much suctioning. She was moved into a private room are we were able to bring her out for baths and cuddles and be quite interactive she was very content. Then last Sunday Gemma accidentally extubated herself and required three attempts to be reintubated (with the use of drugs and a paralyzer). Throughout the week she has had a lot of secretions, been quite lethargic, and required frequent suctioning. This may all have been caused by the reintubation but nobody is sure why that would be the case, possible inflamation or another side effect. It is hard to see her go from doing so well and being so active to being like this.

We had a care conference on Tuesday regarding Gemma's future care plan and we were unexpectedly disappointed to hear that the neurologist believes that though Gemma appears to be getting stronger right now, she will outgrown her muscle strength at some point which will lead to a lot of difficulties in her future. We were not given this information before and the doctors aren't sure if providing her with a tracheostomy would be beneficial. We were given a few days to think things over and follow up with a smaller meeting on Friday in which we discussed what in order to move forward in making a decision we would need more information. We requested a second opinion from another pediatric neuroligist (hopefully one with congenital muscular disorders - as the specialist we have now has only seen these type of disorders in older children, they are saying cases like Gemma are extremely rare). We also discussed that we would want more information about the pros/cons of a muscle biopsy (what it can tell us) and to find out about tracheostomies (procedure, benefits, risks) and learning more about what the Canuck Place as to offer.

It has been extremely difficult because we went from feeling hopeful to be placed to having to make a decision about what is best for Gemma's future. Receiving new information has convinced some doctors that 'end of life' care might be the best. But it is very hard not having a diagnosis and to hear this about a baby who has come so far.
It is the most difficult position to be in to see your child grow and get stronger, but have doctors feel that her underlying conditions will be limiting to her later in life. We really don't know what to do but we are hoping that more information will help.

At this point we are focusing on how Gemma is doing, with her recent incident we are waiting to see if this is an indication of things to come or if this is just her recovering from the reintubation.

We really don't know what to do but we are asking for your continued prayers.
Love Amanda, Charlie & Gemma

June 17th, 2010

Hi everyone,

Gemma is 4 months old (2 months corrected) and weighs 9lbs 7oz.

Gemma is growing bigger and stronger by the day. It is hard to believe how far she has come and all of the difficulties she faced. We know that she will have many challenges ahead but we are taking things day by day.

Gemma remains on a ventilator but we have been weaning her settings and she has been doing quite well. We have been told that with her brain and muscular conditions that she shouldn't be as far as she is but she is proving to them that she is a fighter. On Monday they are going to attempt another extubation, we are extremely nervous about it but hope it goes well so please say a little prayer for her.

Here is a list of Gemma's progress:
-Longer alert periods.
-More range of movement (she can tilt her torso and head, pull her legs in, lift her legs against gravity, spread her toes and even do little kicks!). Physio is considering casting her legs but we might have them hold off.
-She has moved down to just 'pressure support' on the ventilator, which means that she is initiating all of the breaths herself (she needs the ventilator for her pressures - to keep her lungs expanded - but there is a machine that she might be able to graduate to that does this without being intubated).
-She has been free from all conditions (edema, pneumothorax, chylorthorax...etc) and all IV's and lines for over a month and a half.
Gemma is the third oldest baby in the NICU of over 50 babies, the oldest above her are 8 & 12 months! we are hoping and wishing for the day that it will be our turn to go home.

Thank you for all of your continued thoughts and prayers.
Love Amanda, Charlie & little miss Gemma Violet

June 7th, 2010

Gemma is almost 4 months old and 9lbs.

Things have been going better than last month.

Gemma has been doing well and we were able to get her down to minimal ventilation settings and did better than expected so we trialed an extubation but unfortunately she failed.

Gemma is able to initiate all of the breaths but she is very pressure dependant so we have her on 'pressure support' and have a new plan to wean her rate. The doctors don't know if she will ever be able to breath on her own but I am pushing them to make every effort to see what she will be able to do before making any decisions.

Things can be extremely frustrating at times when you don't feel like you have a say over your own child.  I feel that this next wean is pushing her too quick but only Gemma will be able to tell us what she is ready for.

Charlie and I went in for our EMG test today to see if we had any underlying muscular/nerve conditions to help figure out Gemma's condition but everything was 'normal'.

We are waiting on her DNA results from Germany to see if they can figure out which genes are affected, which might give us possible direction towards her diagnosis. Gemma's condition remains undiagnosed and we may never find out what she. Genetics think she has a rare/dormant/hereditary disorder where an abnormal chromosome on each of our sides was passed down through generations until we (two people that were carriers) came together to produce a baby that (out of 1 in 4) could get it.

Gemma has been doing quite well, she has no IV lines, no medications (except for her suspected reflux), she is moving more, having long active and alert periods, and having more range of motion in her legs.

Thank you for your thoughts,
Love Amanda, Charlie & Gemma

May 9th, 2010

In the last update I was happy to be able to write about Gemma's progress, it seemed like we were getting so far and doing well. I am disappointed and sad to have to write that things haven't been going very well.

In the last week and a half Gemma has been having a lot of 'de-sats', where her vitals have been fluctuating and she has been requiring oxygen. She is normally on 'room-air', which meant that her lungs were healthy and she was able to do more work on the ventilator. At first we thought it was a bit of a food intolerance or reflux but it continued and her CO2 increased so we ended up having to take a step back with her ventilation and put her on the old mode that does most of the breathing for her. It helped give her a break from whatever she was struggling with and she was able to go back to room air intermittently but lately she has been requiring oxygen again.

Gemma appears to have a bit of pneumonia but she seems to have had it a while and it isn't affecting her white blood cell count or haemoglobin. The last few days she has been looking more comfortable so perhaps it was a bit of exhaustion from doing a lot of work on the other mode of ventilation, combined with a few other changes.

This past Thursday someone from Genetics came by to have me sign consent for Gemma's DNA to be sent to Germany for testing to see if they can help give her a diagnosis. The DNA was already in storage so they didn't have to perform any tests on Gemma. The reason it took a while for the DNA to be sent off is that they had to get funding, almost $6,000 that has been approved by MSP. We are grateful that Genetics followed up and are trying to help us work towards a diagnosis.

Just as we were feeling hopeful we were blindsided on Friday with devastating news about Gemma's MRI scan. It shows that some original brain trauma that they weren't concerned about has actually gotten worse and that her brain isn't growing at a normal rate. We were previously told about things she *might* not be able to do with a Neurological Muscular/Nerve disorder, without a diagnosis they weren't sure, but with the MRI they have a lot more 'concrete' evidence of what they believe she won't be able to do, which is quite extensive. They expressed serious concern as she already has other underlying conditions and this makes things a lot more complicated. Her care seems to be put on 'hold' and their recent pro-active attitude has drifted towards an overall feeling of uncertainty about her future and talk of palliative care.

We have asked to speak further with Neurologists next week to see if we can find out more information to give us a clearer image of what her future would be like and set up another care conference to discuss what will be the next step.

We appreciate your support and ask you to keep us in your prayers.
Love Amanda, Charlie & Gemma

May 2nd, 2010

Hi everyone,

Gemma is now 10 weeks old and weighs 6lbs 13oz! She is getting big and growing quickly.

There haven't been a lot of changes in the last few weeks. We had a 'care conference' for Gemma that included a large team of specialists that discussed her future care. It was helpful to get everyone on the same page and hear what they had to say. They are going to repeat a few tests and see if there is anything further we can check for. They think her condition is extremely rare and maybe only a handful of reported cases in the world.

There is a lab in Germany that we might be able to send some testing off to. Gemma still remains undiagnosed but they are considering performing a muscle/nerve biopsy in hopes that it will give us more information about her prognosis but it isn't something I want them to do anytime soon because she is still small.

Gemma is on a new mode of ventilation that is allowing her to do most of the work herself, she is doing fairly well on it and hopefully it is one step in the right direction. They are going to try and 'wean' her settings weekly to see how much she can handle and we hope that she will grow stronger and stronger.

Last week Gemma was given the clear with her chest x-ray to start EBM (breastmilk) and formula (which contains a higher long chain fat content that they were worried might cause reaccumilation of her chylothorax condition).

In the last few days she has been having episodes of grimacing and desaturating with her oxygen levels so I was worried that the condition came back but she had an additional x-ray this morning that shows that her lungs are clear, so that is really good. It leaves us puzzled as to what is bothering her but hopefully it is just an adjustment to her food changes.

Gemma graduated from 'yellow' to 'green' on the charting system that basically means that she is 'stable'.  

Last week Gemma had a repeat brain ultrasound that shows that the asphxyia she had at birth has caused her to have a condition called PVL which is linked to Cerebral Palsy. We thought that it could be the explanation for her condition because it effects motor skills, however it looks like this is an additional condition to add to her list. Gemma is getting an MRI on Thursday which we hope will be able to tell us more information.

We were also told that she is healing from another small fracture on her upper femur but they are concerned that she may have brittle leg bones that could cause her future problems. It seems like one thing after another but Gemma is proving to be quite strong.

Love Amanda, Charlie & Gemma

April 15th, 2010

Hi everyone,

Baby girl Gemma is two months old today (39 weeks corrected) and they are now calling her a 'term baby' (I was due on April 21st). She is 5lbs 7oz and has gained over 2lbs since birth.

Gemma has been through so much in her short life, resesitated at birth, bilateral femur fractures, two cases of Pneumothorax and Chylothorax, quadruple chest drains, morphine for four weeks, three 2hr attempts at PICC (IV) lines with a successful PICC line that was left in for 5 weeks, arterial lines (blood work line), peripheral lines (line for blood products), NG tube for feeding, reintubated (new ventilator tube) and ventilated for almost two months.

Gemma has overcome most of her battles and not only remains strong but continues to grow and show progress. At birth Gemma showed no signs of spontaneous movement and minimal alertness, she was very hypotonic and the consensus is that she has a neurological muscular disorder. An MRI and brain monitor showed 'normal' results, then she was tested for Myotonic Dystrophy and SMA, both came back negative. The EMG (nerve/muscle conduction test) shows that she has a severe nerve/sensory disorder, however they have not yet ordered anymore testing and she remains undiagnosed.

Gemma now has longer periods of being awake, bright eyes that are focusing on objects, moves her arms against gravity and since her femur fractures have healed she is able to have some leg movement. Physiotherapy is very impressed with the work Charlie and I have done to improve her flexibility and range of motion. Gemma is gaining 'real' weight now that her Edema is gone, they have increased her feeds and she is going on EBM within a few weeks!

It is so great to see her without all of her tubes and lines and now that these conditions are behind her, Gemma faces her biggest challenges. There is the uncertainty of her future ventilation and nerve disorder. It is hard to know what she will be capable of, she has an extremely rare condition and it causes everyone a lot of frustration not knowing what to do, what to try or what to expect.

A 'care conference' is being organized for next week where all the specialists involved in her care will meet to discuss her future. It is worrysome as we have heard some very negative opinions but hopefully something positive will come from it and allow for all of us to be on the same page.

At this point we are focusing on all of the positive that Gemma has accomplished and take things day by day.

Love Amanda, Charlie & Gems













































April 3rd, 2010


Hi everyone,

Today is Saturday, April 3rd and Gemma is almost 6 weeks old.

I'll start with the good news;

-Gemma has had quite a stable week and this week we were finally able to get rid of the machine that used to hold all of her medications and IV lines when her PICC was removed, after having it in for 5 weeks! It is so nice to have her clear of all those lines and to be able to rub her arm and put clothes and mits on her.
-The doctors decided to change Gemma's ventilation tube, which caused her to have a reintubation procedure done. I was really scared about this but it went well. There was a big 'leak' around her other tube so by changing it they were able to add a 'cuff' that would allow it to expand as she grows and have better control over her ventilator settings. It is beneficial for her but frustrating that it doesn't seem as comfortable for her as the other one.
-She is tolerating her formula feeds well and they added protein and vitamins to maximize her nutrition.
-She is growing and changing so much, there are so many little improvements that we have seen over the weeks. The first few days after reintubation she was quite lathargic from morphine but she has been moving more and having longer alert periods.
-Her SMA test came back, no one told us... I actually found it in her file from last week that the results came back NEGATIVE! so we are relieved about that.

Not-so-good news;

-Gemma is still very ventilator dependant and we are not sure if she will ever be able to come off. She overrides it at times but not consistantly like we need her to do, doctors and respiratory therapists are concerned that she might not be able to have the ability to breathe on her own and we aren't sure why, it is probably related to her underlying condition. She has had many set backs until now that haven't helped her respiratory situation so we will see what happens.
-We had a meeting with a Neurologist (Brain/Muscle/Nerve doctor) and Neonatologist (NICU doctor) on Thursday and we were told that the results from Gemma's EMG test states that she has a severe nerve and sensory disorder. Her condition is still undiagnosed and they aren't sure if we will ever know what she has, it seems very rare. They are going to try and collaborate some possible tests but have serious concerns about her future and what it will mean for her. These doctors barely know her and we aren't exactly sure how they are coming up with their opinions but I told them that she has overcome so many hurdles and bit by bit she is showing signs of improvement so we will wait and see what she is capable of! I am not going to take them too seriously at this point. Next week I am going to try and set up another meeting with the Neurologist, I was too upset to gather my thoughts last week so it will help for us to ask more questions.

Thank you for all of your continued thoughts and prayers, keep sending positive thoughts our way!
Love Amanda, Charlie & baby Gemma



















March 25th, 2010

Hi everyone,

Today is Thursday, March 25th and Gemma is 35 days old (5 weeks today).

In the previous update Gemma was making quite a bit of progress, but as things go around here it is a bumpy path of many ups and downs.

Gemma has had somewhat of a challenging week, she has been extremely sensitive to handlings and her stats haven't been as stable as they were the previous week. She developed pneumothorax again that went away after a few days, but then has recently developed chylothorax again a few days ago that will hopefully reabsorb on it's own without reinserting chest drains.

Gemma has had a lot of handling and blood work lately so it may be related to her unsettled state but as we let her rest she seems to get better so hopefully whatever is bothering her will be resolved soon.

We received the results from the EMG (nerve and muscle conduction test) and it came back that her disorder is more 'nerve - sensory' related than muscular, however they can't rule out a muscular disorder and are therefore waiting on the SMA results to come back (another couple of weeks).

I have asked to set up a meeting with neurology so that we can ask them some questions and hopefully get an idea of what other disorders we might be able to test for and some idea of what we can expect.

Gemma is still on diuretics, but they have weaned her down to two instead of four. Her edema has come down significantly, though still remains a bit swollen on her sides and lower extremeties.

Over the last number of days Gemma has been quite lathargic, they did a hemogloban test because they thought she was anemic but her levels appear fairly normal. We also did a white blood cell count in case she was contracting an infection but that came back normal as well. Some of her other levels are a bit low so they are giving her some supplements.

Babies can't tell us what is wrong so we have to go by their levels (blood work, heart rate, blood pressure, oxygen...etc) so it is hard to know what is happening at times.

Get well soon Gem.

 



























March 16th, 2010

Hi everyone,

Today is Tuesday, March 16th and Gemma is 26 days old, hard to believe she will be a month on Thursday!

I am happy to report that Gemma has been having a very positive week, she is doing so much better and is proving to be quite a fighter!

We are still waiting on results from her SMA test, which could be a number of weeks. Today she had her EMG (nerve and muscle conduction test) and neurology will get the report back tomorrow.

Gemma is still on a ventilator and there are a few underlying conditions that could be preventing her from having the drive to breath but we hope that she will be able to be weaned off.

Gemma appears to be healed from chylothorax so they took her chest drains out and started her on a special formula that shouldn't reaccumilate the same type of fat caused by breast milk.

They took an x-ray today and her chest looks good so far. Gemma is on a range of diuretics to help with her edema, and that has come down a lot in the last week, she is almost back to a normal size!
Since her swelling has come down she has been able to move around quite a bit, she has lifted both arms against gravity in the last few days, which is a first since she was born. Her bilateral femur fractures have healed and we have started physio on her legs to gain more movement. She is only really able to move her feet right now but is showing some flexibility.

They discontinued her morphine and she has been a lot more awake and able to start focusing on things. I am hoping soon that all of her levels will balance out so that they can discontinue her diuretics and albumin (which is causing her to have an additional IV in her arm).

It is amazing to see Gemma look so much better and be a lot more alert :)

Thank you for all of your positive thoughts, prayers and support,
Love Amanda, Charlie & baby Gemma
























March 6th, 2010


Hi everyone,

Today is Saturday, March 6th and Gemma is 16 days old.

It has been a difficult couple of weeks.  Gemma developed chylothorax and has chest tubes in to drain the fluid (just as she was healing from the last set of drains from pneumothorax).  The fluid is still draining and we hope to have the tubes out in the next week and hopefully her condition will heal quickly.

They stopped her feeds because the fat in the milk was causing this condition to worsen and when the drains are out Gemma will probably need to go on a special formula. 

Gemma also has edema quite badly, so as you can see by the pictures she has retained a lot of fluid and became very swollen. They shaved one side of her head to try and insert a PICC line (an alternate IV line as the belly button line had to come out after she was unable to continue with feeds), however that line didn't work so they shaved the other side of her head (giving her a mohawk) but unfortunately the PICC line was unsuccessful so they ended up putting the line in her arm.

Gemma's Albumin levels lowered so they inserted a peripheral line into the centre of her forehead.  They removed the arterial line in her leg but had to replace it in her other arm, so at the moment we aren't really able to hold her arms which is hard for us because it is one of our only means to give her comfort.

Gemma's urine output is a bit better and they have given her another diuretic to assist with her Edema, so hopefully her swelling will come down. She is still on morphine for her pain but perhaps in the next week once her tubes are removed and her femur's are healed then we can discontinue it.

Gemma's vitals have been fairly stable and she has been moving her hands the last few days but hasn't opened her eyes (which is probably from the swelling).

It is absolutely amazing what this little girl has gone through and how strong she is.

Thank you for all of your positive thoughts, prayers and support.
Love Amanda, Charlie & baby Gem

 



















March 2nd, 2010

Today has been one of the most difficult days, Gemma ended up having a bit of a relapse, her vitals were quite high today and her body started swelling. Gemma has edema (fluid retension) and she has been quite unresponsive since yesterday. I started listing my concerns yesterday but the nurse wouldn't listened to me, I tracked down a few doctors today to tell them that I was really concerned, they didn't really know what to tell me so I finally had a neonatologist (head doctor) come over and realize my concerns (which proved to be right - mothers know best!) and he is worried that she has an infection and wants to start antibiotics right away.
They did a chest x-ray to find out that she had fluid building outside of her lungs and had to put in other chest drains (just as she had finished healing from her previous drains from pneumothorax). Gemma has minimal urine output because of the edema so they have given her diuretics.  They are doing a lot of testing with her lung fluid, blood and urine to see if they can find some answers. They might have to insert another IV line (PICC) into her arm or scalp and put her on other fluids for a while. They have stopped her feeds and are giving her TPN. 

Tonight her heart rate and temperature are really high so we are trying to let her rest.  They have increased her morphine dose and ventilator settings again for her to be comfortable. 

Just when we think we have taken a step forward we end up going a few steps back.

Today has been extremely emotionally draining and stressful. It is so hard to see her suffering and not have any control over the situation. It is such a helpless feeling but she is such a tough little girl.

Thank you for your thoughts and prayers,
Love Amanda, Charlie & baby Gem

March 1st, 2010

Hi everyone,
Gemma is 11 days old today. 

Her vitals had been fairly unstable over the last few days but luckily they have come back to a 'normal' rate.

Yesterday I got to have some 'cuddle time', which is where they put her pad on my lap and it was the closest thing to getting to hold her, it was wonderful!

Gemma's morphine dose has come down and hopefully they will take her off soon so that she can be less sedated and be able to do some breathing on her own.

Gemma's feeds have increased and she is tolerating them well, she might be on 'full feeds' by the end of the week (which means that her IV can come out). The test results were supposed to be back today that we were anxiously awaiting but now they are telling us that it will be another few weeks!

We are taking everything day by day, there are highs and lows but we are remaining positive and hopeful. Thank you for your ongoing thoughts and prayers.

Love Amanda, Charlie & baby Gemma

February 27th, 2010

Hi everyone,
Gemma is 9 days old and weighs 1560gr (3lbs 7oz).

Gemma has been doing well.  The last few days have been a bit challenging as her blood pressure and heart rate have increased so they decided to put her back on morphine and increase the ventilator settings.

A few days ago Gemma was doing more breathing on her own but now she will be set back a few days until they decide to take her off morphine.

Gemma seems to be more aware so between her moving more often and having diaper changes these things are probably irritating her fractures, so they have her sedated so that she can rest. It is hard not being able to see her awake but it is best to keep her comfortable. We are trying to keep her calm as she has been getting irritated easily.

Gemma has jaundice again but they only put lights on her for one day. They shaved a small section of her head to try and insert a PICC line but luckily today the doctor agreed with me that it is something we can hold off on and might not need to insert it if they can continue using her current IV line (because she will be on 'full feed' in four days and they can discontinue her other lines then). They also agreed with me that we can space out her weighings so she has less movement (to help her from being uncomfortable).

Gemma's femur fractures should be healed in another week or two and hopefully we will find out from orthopedics when she will get her next x-ray to check on the progress. Monday we will receive news of the test results, I read a bit about the conditions they are testing for (SMA, Myotonic Dystrophy) and we hope the results back negative.
Thank you for your continued thoughts and prayers, we will keep you posted.
Love Amanda, Charlie & baby girl Gemma












The beginning

Hi everyone,
On Thursday, February 18th, I went in for an emergency caesarian at 31 weeks gestation. Our baby girl Gemma was born 9 weeks premature, at 3lbs 4oz and needed to be resesitated at birth.

She is a week old today and it has been a difficult week of obstacles but every day she is growing stronger. Gemma was born with many difficulties, including fractured legs. She wasn't moving very much after birth and the doctors told us within the first few days that she might not be 'compatable with life' and wanted to do an MRI to see if she had a 'neurological muscular' disorder. Luckily the head scan appears to be normal. There are a lot of unanswered questions and right now we are waiting on a few other important tests to come back that will hopefully give us some more answers.

Gemma is still not breathing on her own but in the last few days has started to make an attempt. She had chest drains inserted to drain some air outside of her lungs and that cleared up so those tubes were removed last night. She has a little bit of jaundice but she hasn't needed very much phototherapy. In the last few days she has started moving her hands, wiggling her toes and opening her eyes. Every day she has been showing improvement, she is such a fighter.

We are remaining hopeful and strong, thank you for all of your thoughts and prayers.
Love Amanda, Charlie and baby Gemma