Home For Christmas

 Evynn has been home from SickKids for over 2 weeks now... She is stable for now on the 'cocktail' of medications.  She is enjoying all the visiting with friends and family during Christmas but hopes to avoid all the coughs & colds... Looking forward to the NewYear bringing the best gift of all.

World Transplant Games

Take a look at the new link posted above.  Many of the staff in the video know Evynn...

Endless Testing...

As part of the work up to transplant, Evynn has had to undergo many tests & scans.  Yesterday, was the GFR (glomerular filtration rate) scan to measure her level of kidney function.

Her blood work included; type + screen, anti-HBS IgG, cmv IgG semiquantitative, cmv IgM, cmv PCR, EBV serology, Hepatitis B surface AG, Anti-HBc AB, Anti-HBe AB, Anti-HBs IgG, Anti-HCV IgG, CBC, IgA, IgG, IgM, HBeAg, HBsAg, HIV Ag/Ab combo screen, HSV IgG, HSV/CMV/EBV PCR, Isohemagglutinin Titre, LMWH (enox level) Toxoplasma gondii IgM, VZV IgG, VZV/HHV6/HHV7 PCR.  She has blood work done almost every other day and sometimes twice a day, which lead to needing a 70ml blood transfusion.  Her cardiologist attempted another try with captapril (heart function med), the first time it dropped her blood pressure to 40/p.  This time she tolerated the first dose, they will continue to up the dose for the next few days.  They are still thinking that once her meds sorted out she should be able to wait for a heart at home.

Listing....

Evynn's cardiologist has decided not to wait any longer.  They are moving forward with putting Evynn on the heart transplant list.  She is still waiting in hospital to sort out her medication, they haven't been able to find a heart med that doesn't drop her blood pressure too low.  The plan is to get her meds figured out and then wait at home... fingers crossed.  Waiting can be anywhere from weeks to months...

Ng is back.

Evynn had an Ng tube put back in yesterday.  She is so annoyed with it, but she needs to increase her intake.  They tried to increase her heart meds but her blood pressure won't tolerate it.  So much for going home today...

Home... And back again.

Evynn was discharged on Thursday, and was so happy to be home with her family.  But by Saturday morning her CHF symptoms had gotten worse.  She could barely keep her eyes open & was having a harder time breathing.  She was re-admitted Saturday night.  She has reduced her bottle feeding and may have to have the Ng tube back.  After adjusting some of the meds & doing blood work we should be allow home again.

Looking forward to heading home...

Evynn's improving each day.  Wires & tubes have all come out, including her Ng tube today.  She has proven she has enough energy to drink her whole bottle, a sign that she is responding well to the eight meds helping her.  The plan is to let us go home possibly Tudesday.  She still needs to wean off the morphine and have a detailed echo.  Transplant still looks like the most likely next step... but when will be up to Evynn's heart.

Out of the CCCU... for now...

Evynn moved out of the ICU and up to the cardiac ward today.  She is still being weaned off the morphine and will remain on meds to help her heart function.  Tomorrow we meet with the transplant team to discuss whether heart transplant would be a better path to take.  The surgeons and other specialist will review her case Monday morning.  Their hope is that Evynn can wait for the next step at home.

Off Ventalator!

Evynn was extibated today!  She tolorated the chest closure and is now breathing on her own.  Her nurse thinks they will take out her chest tubes tomorrow.  Evynn's blood pressure is a bit high which they are controlling with meds and her heart is still not functioning well... also being controlled with meds.  The valve which caused all this drama is still leaking.  Her surgeon continues to mention heart transplant as a possible route... so we continue to play the wait & see game.  BUT it was wonderful to hold her today!

Closing her sternum again...

The surgeon is going to close Evynn's sternum today.  It will be a waiting game to see if she tolerates it.  Her heart is now in a sinus rhythm (good), but still on the pacer maker because when they attempted to remove it her heart rate was too low.  Her valve is still leaking and will need more surgery and for now her heart squeeze is not great.  Still on many iv drugs... More waiting...

Stable?

Evynn has managed to stay off of ecmo so far.  Her chest is still open, she has sixteen different drugs running... still on a tone of morphine and muscle relaxants.  She was being cooled to 34o, but they are going to slowly warm her up to 35o to see how she copes.  Her heart is being paced at 145 beats per min., they are hoping warming up does not increase the JET rhythm above the pacers.  They say she's having a good day... they call her stable...

Not a good day

Evynn's heart has gone into a JET (junctional ectopic tachycardia) rythm, with a high heart rate, and decreased heart function.  They are agressively trying to lower her heart rate so they can bully it into a good rythm with an external pace maker.  Evynn's heart rate goes up every time we talk to her or touch her.

Later today Evynn had her chest opened back up to give her heart more room to "do what it needs to" because she was not responding to the drugs. She may need to be put on an ECMO (extracorporeal membrane oxygenation.)

Cardiac Critical Care

Evynn came out of surgery last night after 10pm.  Her surgeon was able to improve the function of her valve from severe to mild/moderate.  He expects it to be back to moderate within the month.  He was sucessful at lowering the pressure in her lungs and preformed the planned Glen stage (removing the shunt).  She is recovering in the CCCU and is being watch closely.  Her heart squeeze is not good but they are trying to give it a boost with Epi.  She has a list of drugs including morphine and musle relaxents.  She is still intebated.  When they lifted the relaxents she opened her eyes and was moving around but they don't want her to move too much yet.  A long term plan has not been established yet, the surgeon wants to see what her heart will do after recovery.  We've been told it's going to be a long road...

Big Day

Evynn went into surgery at 3pm today.  The surgeon is unsure at this moment what he will accomplish, he is aiming to repair her valve and proceed to the Glen.  He is not expecting to come out of surgery until after 8pm tonight. We won't know much for the next 24 - 48hrs.

Not the best results...

Evynn has recovered from the heart catheterization, but has been admitted to SickKids again.  The catheterization showed her leaky valve has gone from moderate to severe.  This is causing the pressures in her lungs to be too high.  The doctors and surgeon have decided to discuss her case this coming Monday when the surgeons and other specialist consult about up coming surgeries.  They are expecting she will now have surgery this coming week instead of the end of November.  The leaky valve has to be repaired to bring the pressure down, before she can have the Glen stage surgery.  They will debate whether they think they can do this all at once or whether it needs to be two separate surgeries.  The hope is that her surgeon will be able to repair the valve and proceed with the Glen all at once.  For now, Evynn is stable and still smiling...

Heart Catheterization...

Evynn will be having her Heart Catheterization Test tomorrow at SickKidds.  They do this in preparation for the Glenn surgery.  The will check the structure of her heart, pressure in the chambers and oxygen level in the chambers and blood vessels.  It's done by putting a long thin tube into her heart through an artery or vein through the groin.  Like with any procedure it comes with risks... praying all goes well.

4 Months & finally 9lbs!

Although it's time consuming our new feeding system is packing on the pounds.  Evynn has finally reach 9lbs or 4.1kg, she still needs to get to 11lbs or 5kg before the next surgery but the way things are going, that shouldn't be a problem.

NG feeding running our lives...

Evynn has been discharged from SickKids with the NG tube.  She still has a cold but her symptoms & sats have improved.  We are now trying to manage the feeding routine which is beyond ridiculous.  The whole process of sterilizing, mixing, warming, oral feeding, ng tube top-up, sterilizing again and then pumping for the next feed takes 1 1/2 hrs.  This has to be done every 3 hrs around the clock.  Not sure where sleeping and other daily activities fit in there.

Evynn and her Mom are back at SickKids

Evynn has recently been re-admitted to Sick Kids. Due to her cold her weight gain has been compromised and the doctors have put her on a NG tube (nasogastric) for feeding.  Evynn is not impressed with this tube at all, in fact she is rather infuriated. While at Sick Kids she will undergo echo's (Echocardiogram) and they will monitor her NG tube intakes.

Evynn is also having X-rays taken to make sure her cold is not an infection. The X-rays will check for fluid in her lungs as well as around her heart. As weight gain is the major concern right now, when she is discharged Evynn will be going home with the NG tube until her weight is at a suitable level for her upcoming surgery.

Cold & Flu Season

Back to school for us, now means GERMS!  Evynn has her first cold which causes a lot of concern.  Her appetite has gone way down, so she has now lost essential weight, and because of the stuffy nose her saturation levels have decreased as well.  If the saturation levels go down any farther she will need to stay in the hospital on oxygen.  She avoiding that for now... but it's going to be a LONG cold & flu season.

Weight Problems

Yesterday was another long day at SickKids, but this time the cardiologist is happy with her saturation levels.  Echo results are good although the sedation is a nightmare ordeal.  The oral drug is torture for the babes.
We are increasing the concentrated feeds, because this past week she has only gained 25g, which is what she should be gainning in a day!  Evynn does not like taking her bootle from me, but will let her dolly feed her... so we do what we can.

Struggles...

Evynn is causing a bit of concern, after being taken off of her lasix (which removes fluid around her heart), she saturation levels are down.  We had to spend a day having an unplanned x-ray, echo & blood work.  Her cardiologist has now got her back on the lasix, but that has caused her to loose 8oz in one week.  She has now fallen off the bottom growth chart.  The surgeons want her to be at least 11lbs before her next surgery in 2 months.  With the way things are going... that will be a struggle.

3 months

Evynn is almost three months old and loves to be held. She is watched closely by her cardiologists at Sickkids, through monthly Echos, ECGs and blood test.  Evynn will have a Heart Catheterization Test done in October.  The cardiologist puts a long thin tube through an artery from her groin to her heart.  Then they x-ray her heart while they send dye through it.  This is to prepare for the next surgery, the Glen, which will be done sometime in November.

Gaining Weight

Evynn has finally reached her birth weight.  Although she feeds well, her weight gain is slow.  We are now fortifying her feeds with formula to add extra calories.  Evynn now weighs 3.24Kg and her cardiologist wants her to be at least 5Kg before her next surgery.
Evynn has been enrolled in a 5th study.  This one is a long term data collection study for the Congenital Heart Surgeons' Society.  I've added a link to their website.

One month post surgery...

It's been just over a month since Evynn had her Norwood surgery.  I would like to thank everyone for all your thoughts and prayers along the way.  I have posted links to videos that explain & show the Norwood surgery.  The second surgery will be some time in the next 3 - 5 months.  I will continue to keep you all updated.  Please feel free to comment or ask questions here.

Belly buttons...

Evynn and the family are adjusting to being at home with Evynn's condition.  An amusing part of her recovery is the button the surgeon sewed to Evynn's belly so he wouldn't loose the stitches into her skin.
Yesterday, Evynn was back to SickKids to have her picc line removed.  Doctors' are pleased with her ability to nurse, which can be a challenge for babies with HLHS.

Evynn is HOME!

Evynn was discharged from Sick Kids on Saturday and is now at home with her family! 

Evynn is Moving up

Evynn has been discharged from the cardiac critical care unit and has a new room all too herself in a non critical recovery area (fourth floor) of Sick Kids. Amazing.

She's Off The Respirator

 Evynn was taken fully off the respirator.

Carol and Jeff have been living at Sick Kids with Evynn for 2 weeks now.

Evynn post surgery - photos are explicit

Evynn is recovering well. The doctors have taken out one of the drainage tubes. She is being weaned off of the respirator slowly. 

This photo was taken while Evynn's chest was open to alleviate pressure.

Her chest was fully closed yesterday.

June 4th- Chest Closure

Today the doctors closed Evynn's chest, ahead of schedule because she's doing so well. Mom, Dad and Sick Kids Staff are now watching closely to see if her heart will tolerate this step. Big brother Aiden and big sister Noa are praying hard for her to get better and be able to come home.

June 3rd- Progress

Today Evynne is doing very good. The doctors are thinking of closing up her chest in the next few days. Jeff and Carol would like to thank all the people who have prayed and sent their love. Keep the prayers coming. Evynn is one strong baby. This a photo taken pre surgery of Carol giving her a bath.

June 1st 2011

They have reduced sedation and Evynn opened her eyes for her Daddy today! She was moving a bit too much so they are sedating her to let her keep healing. The doctor's are shaking their heads in amazment at her progress. However, she is still not out of the woods.

A day after baby Evynn's surgery

Evynn surgery took longer than expected due to her complicated condition. She was not doing as well as the doctors wanted her to so she was put medication to increase her heart beat strength and a pacmaker for regularity. She has a machine breathing for her to help her recover. She is back in the Critical Care Unit and is on a long road to recover. The Norwood surgery accomplished what the doctors intended. Evynn is heavily sedated and not out of the woods yet, but she did well over night. The family is coping as best they can with the circumstances. Evynn is a part of three studies at Sick Kids which her parents are happy to know she may help other babies with hypoplastic left heart syndrome in the future.

Evynn's First Surgery Day

This morning around 8 am, Tuesday May 31st, one week old Evynn was taken into surgery.  The surgery could last anywhere from 6- 12 hours.

Evynn's first Week

 Eyvnn got to have some of her mom's milk in a botttle for the first time. Aiden & Noa were able to hold and cuddle her.

Prayer's for Surgery Day

Evynn's first surgery is set for Tuesday May 31st.

Prayers are welcome and appreciated!

Evynn's Arrival

Evynn Nevaeh Syme

6lbs. 15oz.

May 25th, 2011

Evynn's Arrival is Coming Soon