Sunday, 30 September 2012

One Small Step for a Baby, One Giant Leap for Hope!

We are so blessed by the vast number of people that are praying for Hope and our family.  I truly believe that through those prayers, I am numb.  I believe at times it is the safest way to be and it has allowed me to find joy in some of the moments in today.

Hope's belly measured at 45cm this morning.  We have gone down a total of 4cm's and will have a final measurement done in the morning.  The protein infusions and heavy doses of diuretics are working.  I wish it was a permanent solution, but will welcome the temporary relief it gives our sweet girl.  Hope was given her last protein infusion at noon today and it ran until 1pm.  This was the final dose she was meant to receive before surgery.  We were absolutely amazed that all three doses were able to be given through the same IV without it giving out.  That is simply not possible with the veins that are in Hope's little body.  At 2pm her IV gave out and was lost.  It would have been great to have it for surgery tomorrow, but was most important for the protein infusions.  They had to run blood thinners through the IV 24 hours a day in order to keep it open for as long as they did.  They will attempt to start a new IV in the morning, please pray for success on the first poke.

At 2pm we had a photographer with a beautiful heart come and take family photos.  It was a tough decision for me as it felt like I was admitting defeat before the battle.  I chose instead to realize that no mother will ever regret getting beautiful pictures of her children!  I will be blessed to see their sweet faces, no matter the outcome.

After the photos, we realized that without an IV we could take Hope out of the hospital.  We packed her up and took her out for a walk to RMH.  She thrives in the fresh air and was simply content for the rest of the afternoon.  We had dinner as a family before I walked back to the hospital with Hope to check her in for the night.  She has no idea how important tomorrow is for her.

We have an official surgery time of 12:30 tomorrow.  There is obviously a chance that this could change if the surgeries ahead of us have any complications.  We're fairly certain it will happen in the afternoon at some point.

We are asking you to pray for Hope.  Here are some of the most important specifics that we are pleading with God for:
- that the fluid sac in Hope's abdomen would not be accidentally touched during the procedure.  We do NOT want the fluid to drain as it will refill too quickly and potentially more abundantly as well.
-that she would not struggle while under the anesthetic and would not react to any of the medications given.
-that the hernia repair would be successful and would not return.
-that the fluid she has lost in her abdomen over the last 3 days would not return.  We've been told that it will return as soon as the protein infusions stop.  We are praying this is not the case.
-that there will be NO clotting or further damage to any of her veins.

Believing that our God is capable of all this and so much more, we entrust her into His care.

Saturday, 29 September 2012

It's the Journey, not the Moment

We've all heard people say you need to live for the moment and live each day as if it was your last.  I was thinking today about that in light of the news we received yesterday.  I believe you need to live for the journey and live it to the end.  If I lived each single day with Hope though, as if it was her last; I wouldn't let anyone else hold her, wouldn't eat, wouldn't sleep and would record the entire thing.  How long would that even be possible for?  Each day with Hope is a part of our journey with her.  We have no idea how long or short that journey will be, and we need to be able to travel through the entire thing.  As a result, I live each day with Hope as though I'll see her in the morning following.  It's what gives me the strength to close my eyes.  It gives me the courage to lay her down so she can sleep or walk away so I can eat.  I'm only human, God is the only one that can hold her 100% of the time, doesn't eat and doesn't need to sleep.

This weekend is not relaxing and carries a lot of stress.  We constantly feel the weight that Monday is getting closer and Hope will be back in the OR.  Today we had the nurses put Hope and all her gear in a stroller.  We walked around the hospital with her for hours and even stood outside the hospital entrance for a brief moment so she could get some fresh air.  She loves to look around at all the people and colours outside of her hospital room.  It's nice to break away from her room and imagine we're a normal family that stresses about groceries and what to make for dinner.

Hope is finally off oxygen, her little nose will get a break for a couple of days before she's intubated on Monday.  We're so used to the tubes that we often don't realize when they're gone.  It's always a joy to see more of her sweet face.  Her abdomen was measured at 49.5 this morning.  I simply didn't believe she could be getting bigger with all the diuretics and the protein infusions.  I laid her flat on her back and remeasured her myself, she was 47.  This is one of the things that isn't consistent with the constant change of nurses.  I took a sharpie and gave her a new 'tattoo' for future measurements to make sure they are accurate.  I'm hoping tomorrow she will be even smaller.

I'm not sure how I'm going to hand Hope over to the doctors on Monday.  Shawn's going to have to take her into the OR while they put her to sleep.  I think I would shake and make her feel anxious if I held her through that.  We truly appreciate everyone praying, I simply can't pray right now.  I go to talk to God and just begin to cry.  He knows what I mean and is hearing every word in my heart.  Seeing all the people that have asked others to pray is nothing short of amazing.  The thought of people around the world, on their knees for Hope, is simply beautiful.  The thought alone gives me the strength to get through another day in what seems like a nightmare.

Friday, 28 September 2012

Pleading for Life

Brokenhearted.  That sums up how we're all doing.  On November 18th when we were told that Hope's little heart was broken, I mourned.  I wasn't sure if she would live or die, but I mourned the blessing of a healthy child and feared the worst.  Today my heart feels much the same.  Do I know that Hope will die?  No, but I fear the worst and am being forced to face reality.

This afternoon and evening have been difficult to say the least.  I sat through 3 important meetings with our most important doctors.  I met with our favourite cardiologist in Edmonton, our surgeon and the cardiac anesthetist.  The reality is not good and Hope is running out of options.

The failed PICC line is a much greater devastation than we initially realized.  The cardiac anesthetist explained to us today that he went into the OR for Hope's procedure (although he was not handling her care) and watched.  When they ultrasounded her arms in search of a useable vein, what he saw was not good news for us.  He informed us that we will come to a place, and are near there now, when they won't be able to operate on Hope any further.  They simply won't have a vein that is useable and there won't be anything else they can do.

Every procedure, surgery and poke is destroying Hope's veins.  If we had an option, we would cancel Hope's hernia surgery on Monday.  After meeting with the heart surgeon, we don't feel this is an option.  If the hernia were to strangulate (close off at the top), whatever is inside the hernia would be killed.  This is something we already knew, but that's not the worst of it.  If this happens, it's a death sentence for Hope.  She would not survive and there would be nothing they could do with her current set up for circulation to her bowel.  It's simply too risky to leave and the hernia operation will have to be done.

Each time Hope is put to sleep she does not tolerate it well.  Anesthetic is dangerous for a healthy person with perfect anatomy.  When Hope is asleep, her heart struggles and she needs to be given different drugs to keep her going until they finish.  It is dangerous, and becomes more so with every procedure.  The anesthetist working with Hope on Monday is one of the best.  The head of cardiac anesthesia selected her personally to put his own children to sleep.  There is only one cardiac anesthetist on service this week, and he'll be in the OR doing heart surgeries.  This is our next best and only option for Monday.

There is one thing that every doctor agrees on, Hope's surgery on Monday is VERY risky.  They also agree that we don't have another option.  If Hope defies the odds and sails through her surgery on Monday, Dr. Ross will book her Glenn for when she is recovered.  If she runs into complications and does not do well, as they expect, he won't operate.  At that point, if she stabilizes, we would be sent home to wait.  They would wait until she was literally not able to live without the Glenn and would then take the risk.  They aren't sure if waiting would help, but hope that somehow it would.

This is not the end of the terrible news.  If Hope sails through and has the Glenn, they are fairly sure she won't be a candidate for the Fontan (the third and final surgery) because of her liver.  The pressures from the new circulation would kill her.  She would have to be listed for transplant.  There is a surgery they do in Toronto that we could attempt first, but the survival rate is low.  We'd have to weigh the odds and make a tough decision at that point.  The doctors don't talk much about it as they aren't sure she'll make it to that point.

If you saw Hope on a good day, it would be hard to believe that things are so serious.  Many days we forget how fragile she is and feel so confident that we'll walk her into her first day of school.  On days like today, we are reminded that celebrating her first birthday will be nothing short of a miracle.

One of the doctors raised a really tough question with us.  He shared that here in Edmonton specifically, they have become incredible at working with hearts.  They are able to do things that were not thought possible before.  He shared that he struggles with whether they've gone too far at times and pushed families and children through surgeries that won't change the final outcome.  He challenged us to think of Hope and not to make her suffer any further once there was no Hope of a future for her.  He doesn't feel we are there right now, but warned that we were getting close.

In our third meeting, when I had worked up the strength to ask, I asked if the doctor thought Hope's chance of survival was low.  He looked down and stated that to be honest, he didn't think she would survive.  He feels that the clotting, lack of useable veins and liver issues have pushed us into an impossible corner.  I pray he's wrong.

On days like today I don't know how to pray.  I feel pain and nothing else.  I don't know what to ask God for other than Hope's life, and I know that is already in his hands.  I plead that he spares it, but trust that he has a plan, even if I may not like it.

I'm truly numb and don't want to talk to anyone.  Shawn and I drove to RMH from the hospital in silence, what do you say?  Shawn is sleeping at the hospital with Hope and I asked my parents to go to a hotel tonight as they had planned to do.  I know that this is difficult for everyone and they need an opportunity to mourn as well, I simply don't have the strength to witness it.  I needed to be alone with my pain.  Sadie is sleeping beside me and I can only hope that somehow I'll find a way to sleep as well.

Thursday, 27 September 2012

PICC Your Battles

I'm not even sure where to begin today.  It has not been our day and I am in serious need of a nice vacation.  It was explained to me this morning that Hope would no longer be having a cardiac anesthetist.  There simple wasn't one available for her PICC line and they felt the PICC line was too important to cancel the procedure.  The anesthetist that did Hope's first heart surgery felt comfortable with the doctor that worked with her today during the PICC line.  He was a wonderful doctor and after speaking with him, I felt comfortable with him working with Hope as well.

Hope was in the procedure for about an hour, but came back without a PICC line.  The procedure was sadly unsuccessful.  They are watching her right arm as there were signs of potential clotting.  They had to try the right arm after not having success with the left arm.

Hope was taken to ICE (the step-down from ICU) after the procedure to recover.  While there, she had a reaction to the anesthetic drugs.  It was exactly the same as the reaction she had in Calgary.  I had to pull out my crazy mom side to get the doctors moving to be sure there wasn't any damage to her heart.  Last time she had some damage to her heart function.  I convinced them to give her some steroids and she improved after they were given, just like last time.  On both occasions that the reaction occurred, I trusted the anesthetist and don't feel they did anything wrong.  I simply know that she did not react to it any other time and I am worried about the surgery on Monday.

An anesthesiologist that is working in the PICU came up to take a look at Hope and try to figure out what was going on.  After a lot of research on her past experiences in the OR, they found one difference.  Hope was given one specific drug when they extubated her in the OR, that she wasn't given when she was extubated at a later time or never intubated at all.  They are now wondering if she's reacting to this specific drug.

The plan for the weekend is to give the protein infusion through her IV.  This will work temporarily, but Hope's IVs collapse and cause problems quite quickly.  We've decided it is better to give her multiple pokes to put in new IV's all weekend, than to put her back under anesthetic to try for another PICC line.  Please pray that her IV miraculously holds and they don't have to poke her over and over.  She'll begin the infusions tomorrow and have them for 3 days in a row.

I'm praying for a weekend with no drama!  Hope will remain in ICE over night tonight.  I could REALLY use a night of good sleep and am pleased that I won't need to sleep at the hospital tonight.  The medical staff (other than the rude doctor from yesterday) have been truly wonderful and we still feel confident that we're in the right place.  Some days with Hope are full of drama and complications, no matter who's care she's in!

Wednesday, 26 September 2012

It's in the genes

I have mentioned my Grandma before, but today she needs to be brought up again.  I'm pretty sure no one has ever referred to me as timid or soft spoken.  My grandma was a nurse and ran the OR.  She got things done and wasn't afraid to stand up to anyone.  When I stand up for what I believe in and make some noise, my family comments on how much I'm like my Grandma.  I'm pretty sure whatever DNA was passed to me from her has been very useful in this entire experience.  Today was no different, I didn't make any new friends though.

I'll regress a little....
I left the hospital yesterday on pass without seeing GI.  The nurse called and found out they were very busy and weren't going to make it up to see me.  I returned at my usual time and was told by the nurse that Hope's PICC line had been cancelled and moved to Thursday.  I was confused, it was scheduled for Thursday as far as I knew anyway.

Hope and I had a terrible night.  Her food was given to her straight from the fridge and it was too hard on her stomach being that cold.  She began throwing up around 11pm and had to be bathed and changed in the night.  Her feeds were stopped for awhile and then dropped back to 20ml an hour.  We had been at 30ml previously.

I woke up to the day nurse doing her assessment and was still half asleep.  Again I was told that Hope's PICC had been cancelled and would now be on Thursday.  I said, "I thought it was on Thursday?"  The nurse informed me that they had tried to move it and anesthesia had come to see me in the afternoon on Tuesday.  I was out on a pass with Hope and as a result, her new date was changed back to her original date.  Very confusing, I know.

While still in bed, under the covers and half asleep the anesthetist walked in.  He was pretty rude from the start and wanted to know why I hadn't been there the day before.  He asked a bunch of valid questions about Hope, anesthetists have a very serious role in surgery and are quite thorough.  I obviously appreciate this a great deal as a parent and will answer any question they ask!  I suddenly remembered that the cardiologist had told me to make sure I requested a cardiac anesthetist for Hope.  He felt that with her reaction in Calgary after the MRI and her heart condition, that this was necessary.

I committed a horrible offence, not knowing that I would offend.  I simply said, "We were told to be sure we had a cardiac anesthetist for Hope's surgeries."  This was apparently the most insulting thing this doctor had ever heard.  He clearly felt that I had ripped out his heart and done some break dancing on top of it.  I listened in shock as he rudely tore a strip off of me and informed me why he was amazing and told me to tell whoever felt otherwise to call him directly.  Then he stormed out of Hope's room.

I called Shawn to tell him about this less than awesome experience and planned to address it with our cardiologist when I saw him.  The nurse had already gone to the charge nurse to complain about the outburst and complete disrespect.  She congratulated me on being so calm, but I had to ask her to hold those kind words because I wasn't done yet.  The anesthetist went from our room to the cardiologist and tore a strip off him.  The cardiologist came to see me right away and apologized for the fact that I had been caught up in the middle of so much drama.  I made it very clear that this doctor who was clearly angry and egotistical, would not be touching Hope, EVER.  I asked who qualified for a cardiac anesthetist if having 1/2 a heart didn't qualify?

Before you get bored with all the details, we will now have a cardiac anesthetist with Hope during her PICC line and hernia surgery.  I was exhausted before the day had truly begun.

GI came to consult on Hope again this morning and is going to make some changes to her diuretics.  They have also decided to give her the protein infusion for 3 days in a row.  We're hoping this will have a powerful impact on the fluid in her abdomen and give the best chance at a quick recover from the hernia surgery.  Cardiology is not convinced that these changes will have a large impact, but are willing to give it a shot.  Please pray that this truly helps and we're in the best shape possible before the OR.

Hope has been running a bit of a low grade fever tonight.  One dose of Tylenol has taken it down, but they'll watch her closely tonight to be sure she's safe to go under anesthetic.  They'll stop Hope's feeds at 2am tomorrow morning and begin running clear fluid until 4am.  The amazing doctor that has gotten an IV on Hope in the past, is going to come at 7am to start one before the surgery.  I believe this is for the anesthetist to use while putting her to sleep.  She will be put under a general anesthetic for the PICC line procedure.  Please pray that the IV start will be a success and that the PICC line will be uneventful.

Hope is going to be intubated for this procedure as well.  They have an ICU bed ready for her, just in case she has any complications.  Everyone involved in her care is taking full precautions with her and we are truly thankful for that.

I think our days of passes have officially come to an end.  It was a blessing while we had them and we were thankful for that time as a family.  We'll be back to full days in the hospital with no clear end in sight.  Some days that's easier, I don't get my hopes up and I think about home less.  Having a pass is a much nicer way to visit with family.  We had Shawn's parents up on the weekend and were able to spend time with them at the RMH instead of in our cramped hospital room.  My sister stopped in for a day on her way back to BC, and some friends have popped in when in the area.  We are truly blessed by our friends and could not do this without the support of others.

Thank you for covering our family in prayer and specifically Hope.  Tomorrow she will go in for a minor procedure, but central lines have caused clots in the past.  Intubations have turned out poorly in the past for her.  ICU beds that are reserved as a precaution have been used in the past.  Hope has taught us to never believe something will be simple, and to put 100% of our trust in a God that is capable of handling complicated.

Tuesday, 25 September 2012

Fluid is Not our Friend

It's lunch time on Tuesday, Hope was cleared to go on pass over 2 hours ago. Unfortunately, we're waiting for a consult from GI and have yet to see them.  They said they would be right up over an hour ago.  At least we'll be at the house for dinner to spend some time with the family.  Doctors get called away all the time and aren't usually able to make it as quickly as they'd hoped.

Hope's PICC line procedure has been booked for Thursday this week.  No official time yet, but please begin to pray that they'll be able to get it in her left arm.  We don't want to risk clotting off her right arm and are going to ask that it's put into the left arm again.  This is very complicated with the clotting that is already there and will take a very talented surgeon, lots of prayer and a miracle!

I was reminded by the cardiologist again this morning that Hope's hernia surgery is going to be far from routine.  Although it is one of the most common general surgeries, they fear that Hope will have a lot of complications.  The surgeon will make a cut in the groin area.  This is so close to the fluid in the abdomen and could cause some serious drainage.  They're not sure how they'll stop it and it will make the healing process much more complicated.  Please pray for this upcoming surgery and that Hope will defy the odds and come through without complications.

Hope's abdomen has been hovering around 47cm for the last few days.  Her weight goes up and down, but always ends up at the same spot in the end.  They put her back on the high calorie concentration of breast milk and formula today.  She appears to be tolerating it well and even seems happier to have the extra calories in her tummy.  Tomorrow they will try taking her off continuous feeds and will begin giving her larger amounts in one shot.  It's frustrating to work so hard to get her feeding normally.  I know that on Thursday they'll stop feeding her before the PICC line.  On Monday they'll stop feeding her for the hernia surgery and we'll have to start over again!  Some days I struggle to believe this little girl will ever eat without a feeding tube.

We've now been in Edmonton for 4 weeks, and in hospital for 6 weeks.  It's hard to think about the fact that we haven't even started the surgeries yet.  I know this is going to be a long journey and I pray I have the emotional energy and physical strength to get through it.  We're still not even sure that Dr. Ross will agree to do the heart surgery after Hope heals from the hernia repair.  We need a lot of prayer in this area.  We are not comfortable taking Hope home in her current condition.  She is at the proper age and weight for her Glenn (second surgery) and we don't want to wait until she is more unstable to have it.  If they discharge us from the hospital here and refuse to operate at this point, we're not sure what to do.  Please pray for wisdom and strength as we fight for the best care for Hope.  Pray specifically for Dr. Ross, that he would make a decision that is best for Hope and not for any other reason.  I could use an extra dose of patience too!  I'm not sure how many times I can eat a sub for lunch! (Mr. Sub is downstairs in the hospital)

Thank you for caring and taking the time to follow along.  Our little girl is only 12 pounds and yet we know her impact far outweighs her!  I strongly desire for her to grow up and have the opportunity to share with others about her life.  I pray that is God's plan for her life too.

Sunday, 23 September 2012

48 is a Bad Number.

This weekend has been pretty mellow around here.  Hope was given a pass on Saturday and Sunday for the day.  We left the hospital after rounds and did not have to return until 7:30pm.  Weekend rounds are a bit of a joke, nothing ever changes.  Hope is still on pure breast milk, this should be changed Monday morning.  Pure breast milk doesn't have the calorie content that Hope needs to gain weight.  The amount of energy that it takes for her heart to function as it is, burns twice as many calories as the rest of us.  This is why we mix it with a high concentration of formula.

Tonight the impossible happened, and only because an army stands around us.  My mom took Hope back to the hospital after her pass and agreed to spend the night there with her.  This is a huge sacrifice as she struggles to sleep in the best of conditions.  Hope's room is not an ideal sleep location.  My mom basically signed up for an all-nighter with Hope.  Shawn's parents are up visiting and took Sadie for a sleepover and to spend the day with them tomorrow.  She was thrilled to go with them and excited to have them around again.  After everyone left, Shawn and I were in shock that we were alone for the night with no responsibility.  What a beautiful gift in the midst of the craziness that is our life.  We went out on a long walk and had the chance to talk to each other without distraction.

We had a wonderful time of prayer on Saturday and really appreciated the support and love for Hope and our family.  We truly believe in the power of prayer and beg you to continue praying.  It's always good to be reminded that we're not alone in this journey with Hope.

Hope has been fairly stable this weekend.  She's still on oxygen, but a small amount.  Her belly is at it's high point of 48cm.  It looks extremely uncomfortable and is likely the reason that Hope needs the oxygen to help her breathe.  She has developed a bad rash around her hernia that appears to be improving as well.  We don't do a whole lot, but sitting around the RMH with nothing going on, is better than having drama with Hope's health.

Tomorrow was supposed to be Hope's hernia surgery.  Unfortunately we were bumped until next Monday.  This week will likely include Hope's PICC line being put in (a more stable IV) and an infusion of protein.  This is not a liquid medication that a pharmacist concocts and sends up.  The protein infusion is done through donor samples.  We are constantly thankful for those that donate and have a friend that has organized a blood clinic on the day of Hope's surgery in Calgary.  Here is a note from her for anyone that would like to donate and help bless other families in similar situations.

Monday, Oct. 1 is an important day for Baby Hope, as she is going in for surgery.  A wonderful way to support her is to donate blood, which she may need before, during or after her surgery.  It doesn’t matter what blood type you are, as the intent to help Hope is all that matters.  There is a group booking set aside for Hope at the downtown Calgary clinic the morning of her surgery on Monday Oct. 1, and if you would like to attend the clinic as a group, please contact Rayna at  There are only 7 spots for this particular booking, and Rayna can take as many as 4 people should you wish to car pool there.  Alternatively, you can meet at the clinic or book your own appointment through 1-888-2-DONATE or  It is preferable to either book an appointment or contact Rayna to be part of the group booking as walk ins are not always accepted.  The mobile clinic that day is in Highriver, should you wish to book an appointment there. 

Friday, 21 September 2012

Pass and Prayer

Today was a much better day for Hope.  All of her tests came back negative and they did not find any signs of infection.  We praise the Lord for that answer to prayer!  Hope has been taken off the new formula and it has been decided that she simply will not tolerate it.  Looks like our daughter is taking after her dad.  Shawn would die if he saw the price of the specialty formula she was on.

This morning they introduced breast milk into the Pedialite and Hope seemed to tolerate it very well.  Tomorrow they will take out the Pedialite and start Hope on pure breast milk.  Then she will have her regular formula added in once again.  They are taking the changes very slowly to be sure we don't lose any of the ground we've already gained.

Hope was more herself today and we were able to take her out on a pass.  We got back to RMH just after 2pm and were able to keep her here until 7.  It was wonderful to be away from the hospital and to be able to renew our strength as we continue on this long journey.  It's hard to complain about the length of the journey.  We know that a very short journey would be one with a tragic end and we would rather spend a long time here and have our Hope be healthy.

Tomorrow morning is a time of corporate prayer at the Healing Garden of the hospital.  Some of our family organized this time of prayer and have invited churches from around Edmonton to come and join us as we pray for Hope's healing.  It's at 10:30am if any Edmontonians are reading this and would like to join us.  It's been so neat to hear from hospital staff that their churches are praying for Hope.  They may not have known about our faith otherwise.  It allows us to have such beautiful conversations about God with them.

Our specific prayer needs for those that continue to pray for Hope are:

- that Hope will be healed from the ascites (fluid in her abdomen), before her next surgery - the ascites poses more risks for the surgeon

- that Hope will remain free of infection while she awaits her surgeries

- that God would give the doctors wisdom in making critical decisions for Hope

- that Hope's hernia would remain stable until her surgery

- that Hope's clotting issue in her blood would be healed

- that God would heal Hope's liver issues as this will greatly affect the 3rd surgery 

- that Amy and Shawn would remain faithful to God and lean on HIm for strength

- that God would be glorified in what He is going to do in Hope's life

- that Sadie would not be negatively affected by all the upheaval

Thank you for loving on our family and being such a blessing in our lives.

Thursday, 20 September 2012

Many Minors

Today was not an awesome day for Hope or her mom.  We both had a terrible sleep, she wouldn't settle and morning came far too quickly.  Hope threw up twice in the night and they had to put her back on continuous feeds.  She was extremely irritable, had poor colour and was simply not herself.  They decided to put her back on pure breast milk during rounds.  This is not our best option as we're running out of milk and won't have this option for long.  It didn't seem to help though and she continued to go down hill throughout the day.  By the afternoon they took Hope off her feeds and began running pedialite to rehydrate her.  Hope was extremely dry from the vomiting in the night, and the diarrhea during the day.

This seemed to really help, and she was much happier off her feeds and settled.  Unfortunately, they had to investigate further and do tests and she didn't get a chance to sleep.  Medical staff were in and out of our room all day long.  We had doctors in to look at her hernia, her vagina is covered in a rash and we needed to make sure it was not associated with the hernia.  They decided that it was not and we are able to continue waiting for the surgery.  They wanted to run some tests on Hope's blood.  This is always discouraging news, it took 4 pokes before they successfully drew all the blood they needed.  Two in the head and two in her heel, it's pretty terrible to watch.

The PICU had been alerted and a bed was ready for her just in case.  This was precautionary and thankfully unnecessary at this point.  We're asking you to pray that this was purely an issue with Hope's feeds.  We are praying against her having any kind of infection that could make things any worse.  Please continue to pray for wisdom as the doctors look for a solution with Hope.

Wednesday, 19 September 2012

3 is Too Many!

I've decided that boring is a compliment.  I would rather be boring than complicated.  I love to hear Hope referred to as boring and I had hoped she would be boring all week.  Hope doesn't like boring, she likes to keep things interesting.

This morning they found that Hope's leg was cool once again and have ordered an ultrasound for her.  The ultrasound clinic was extremely busy today and she should be going to have that done tomorrow.  They agreed to allow us out on a day pass again today.  We got all ready and were on our way out the door at 11:30am when Hope had a huge throw up all over her nurse.  Her new formula makes it smell terrible, we even had a nurse we liked!  We cleaned her all up and got her in the stroller to make her escape.  I wasn't even out of the hospital when it happened again.  I had to go back upstairs, change her and talk with the nurse.  I was told that Hope could go, but would need to return immediately if it happened once more.

I am thrilled to announce that Hope did not throw up again and we were able to spend a full 7 hours outside of the hospital!  Hope was able to get some fresh air on the walk to and from the hospital, and was able to enjoy some family time at the Ronald McDonald House too.  It makes this entire experience easier when we get some breaks from the hospital like that.

I'm not sure if we'll be able to get out tomorrow while waiting for Hope's ultrasound.  Hopefully we'll be able to get some day passes on the weekend while Shawn is home too.  Please pray for Hope's tummy as she continues to adjust to this new formula.  Pray also for her right leg as we pray the blood flow improves and we don't have any further complications.  12 more days until surgery, please pray that Hope's abdomen would come down in size as we wait.

Tuesday, 18 September 2012

Temporary Freedom

Today was pretty exciting for Hope, she was given a pass to leave the hospital for 4 hours!  We walked home from the hospital and brought Hope to the Ronald McDonald House for the first time.  She was there while I was pregnant, but has never been inside the house since.  It felt incredible to have her here and to welcome Shawn home from work.  I long to have both my girls in the same place with me, and today it happened.

The nurse practitioner corrected herself at rounds this morning.  She had told me that Hope's surgery was on October 4th, but had meant to say October 1st.  This makes a lot more sense as I thought she'd said it was on a Monday.  In the next 13 days there won't be a lot happening with Hope.  She will have to be taken to have her PICC line put in and a have a consult with Anesthesia.  It was decided at rounds that Hope would receive day passes to leave for a few hours each day until they needed to start prepping for the hernia surgery.  This will be such a blessing for our family and will make for a fun weekend together at the house.

Before we left the hospital today, Hope had blood drawn (successfully!) and a feeding test.  She still hates the bottle and isn't any closer to eating orally.  I do have to applaud their persistence to teach her!  I'm believing she won't start high school with a tube in her nose, hopefully.  They made a change to Hope's formula, in hopes that it will up her protein levels without an infusion.  She did throw up today, hopefully it was an isolated incident and she tolerates the formula well.  Please pray for her little tummy as she works through this change.

I asked the cardiologist if Hope would be able to have the Glenn after her hernia surgery.  He didn't give me a straight answer, but said he hoped so.  We'd really like to bring her back to Calgary in stable condition and not be as concerned about her.  Please pray that if they won't do the Glenn, that God would provide a way for us to stay here.  I can't even believe I'm saying that, but Hope's safety is top priority!

Don't stop praying for a miracle!

Monday, 17 September 2012

Grumpy Momma Continued...

Things change quickly around here, we've mentioned that before.  This afternoon our nurse practitioner came in with some news.  Hope's surgery for next Monday was cancelled.  They have moved her to the following Thursday because of some back ups with the OR flooding.  We thought 11 days was a long wait, but we have another 17 to go!  This also cancelled her PICC line placement as they won't need it until closer to her surgery date.

It's funny, I felt completely calm and relaxed when they gave us this information.  A true sign of the prayer that surrounds us and my faith in God's timing.  Hope's surgery is now scheduled for October 4th.  The one thing Dr. Ross kept saying about Hope's Glenn surgery was that he wanted her to be 6 months old.  Now her hernia surgery is on her 6 month birthday and by the time she heals, she'll be 6 1/2 months old.  We know that they won't discharge her with the hernia, I have to think that God is delaying the surgery to keep her in a safe place.  It may be what we need to have the Glenn while we're here and not have to go home in between the surgeries.

Two weeks with nothing going on at the hospital is a long time.  It's kind of like being in prison at times and I go a little crazy.  Not that I've ever been in prison, but I can imagine the feeling.  We have put in a request for day passes to see if we would be able to bring Hope to RMH at times for a break from the hospital.  No word on whether or not that has been approved at this point.  Stay tuned....

A Grumpy Momma

Today has not gone well and it's only noon.  Hope had a terrible night and made sleeping next to her almost impossible.  I had totally lost my patience by 8am and was thrilled to hear they wanted to take Hope for an echo.  I stayed behind to try to sleep off some of the grumpiness, clearly this wasn't possible!  Her echo was not successful as they weren't able to see the aortic arch, the one spot they truly wanted to check.  Please pray that her next echo would be more successful.  What they could see in her heart, appeared to be functioning well.  We are very thankful for that news and can pray the arch is functioning well, although they aren't able to see it.

We're having an electrical issue with our car, just what we needed.  We'll have to take it in this week and have that taken care of.  We're hoping it can be done quickly and inexpensively.  We've removed a fuse to stop the run lights from being on all the time.  Please pray that we take it to the perfect spot and can have it fixed quickly and easily.  We were told our brakes and rotors need to be done in October, we may try and have it all done at once for convenience...that won't be a pretty price tag but we've been expecting the expense and planning for it, that's better than a surprise.

My dad flew back to the USA today and my mom needed to take him to the airport.  Shawn is at work and I was here at the hospital for almost an hour with both girls!  Abbey was coming to pick up Sadie but we've had trouble with her cell phone getting my messages.  Please pray that we can work out these issues as I don't ever want to be alone with both girls at the hospital like that again, I was about to lose my mind!  I feel bad when I'm super grumpy and someone is coming to help me.  

For the first 30 minutes we were alone, Hope was asleep in the bed and doing well.  Sadie was sitting on my lap and watching some episodes of Max and Ruby.  The calm quickly ended when the lab appeared to draw Hope's blood.  I'm tired of the lab being called to do this, it's never successful!  The nurse practitioner can draw blood from Hope's scalp and is almost always successful.  The lab has failed every time and refuses to draw from the scalp.  Hope was poked twice before the tech decided she was too difficult and left.  I have forced a note to be added to her file that does not allow any lab techs to draw her blood.  If you fail 100% of the time, why would we let you continue to practice on our baby?  The lab in Calgary has gotten to know Hope and does a better job, but we never have the same lab tech here.  Please pray for Hope in this area, it's so hard to draw blood and she needs it done more often than we'd like.

Hope's feed schedule has been changed to try and help her sleep better through the night.  We'll see how that turns out tonight.  They have also ordered a new PICC line to be put in, this will involve another trip to the OR.  We're not sure when this will happen, but it should be in the next couple of days.  Hope needs a line in to receive some protein boosts that they are hoping will bring down her abdomen swelling.  The swelling is causing the hernia to protrude more and makes her uncomfortable.  It's a domino affect with Hope and we want to try and attack the source of the issue that is causing everything else to be worse.

I feel frustrated, exhausted and discouraged today.  I am happy that our favourite cardiologist is still on service this week and will take amazing care of Hope though.  Please pray for energy, rest and some encouragement today.  I often go and look at the prayer schedule for Hope when I'm feeling down.  It instantly encourages me to know that I am not alone and Hope is being lifted up in that very moment.

Friday, 14 September 2012

Prayers for Hope

It's more difficult to write updates when nothing is really happening around here.  I try to get something on the blog each day as I know how it feels to keep checking a blog and finding the post from a week ago.  No promises over the weekend as it gets pretty quiet around the hospital and we don't get a lot of information until Monday.

Hope had her blood drawn at noon today and her levels (for her blood thinners) were still in the proper range, but on the high side.  They will retest her on Monday to be sure they don't get too high and cause a bleed accidentally.  They were able to successfully draw blood on the first poke, this is a huge blessing as it has taken 4 or more on occasion.

One of our sweet friends is spending the night at the hospital with Hope tonight.  I have a terrible headache and need a good nights rest before returning tomorrow.  I'm hoping I feel a lot better in the morning as we try to spend some time with Sadie on the weekends while Shawn is around.  It's nice for her to have her parents together and not distracted by Hope and her care for a few hours each Saturday.    Please pray that I wake up refreshed and renewed.

Speaking of prayer, all I can say is WOW!  We have been in shock and awe as we look at the 24/7 prayer sign up for Hope.  It's so incredible to see the names of people I've never met and people that I have not seen for many years.  God is truly drawing the body of Christ together and we have seen it working the way that God intended.  What a beautiful sight when we can work together and follow God's leading.  We've been asked by a few people to extend it another week to open up some space.  Obviously we are thrilled to have Hope prayed for through the following week as well!  It should be added to the chart soon and will open up some times to people that haven't been able to sign up yet.

There is also a corporate prayer time that my brother and his wife in Australia have arranged.  We are meeting on Saturday, September 22nd at the Stollery Hospital here in Edmonton.  People are invited to gather at 10:30am in the healing garden on the 4th floor to pray for Hope's healing.  If you live around here, we'd love to have you there.  Here is the link to the facebook event:
We would have loved to meet in Hope's room and pray over her directly, but it's simply too dangerous for her weak immune system and would not be safe.  Meeting in the hospital itself will still be powerful and we look forward to this time.

If you don't hear much on the blog over the weekend, do not be alarmed.  There might not be a whole lot to update you on while all the specialists are off and not much will be happening with Hope's care until Monday.

Thursday, 13 September 2012

It's a Date!

Today we finally got a date for something!   Hope has been booked into the OR for her hernia repair on September 24th, no set time at this point.  The doctor spoke with us today and said that they will repair both sides of her groin to be sure the hernia doesn't happen on the other side.  We have 11 more days to simply sit with Hope and wait for that surgery.  Nothing should really happen until then and things should be fairly mellow around here.

I continue to be amazed at the mistakes that go unnoticed and wonder how many I have missed.  I was standing next to Hope's bed as the nurse prepared to deliver her 8pm meds.  I happened to notice that her needle of blood thinners only had 7 units inside it.  Hope has been on 9 units for quite some time and clots very easily.  I told them I wanted a doctor paged and someone to speak to me before that was given to Hope.  I don't want something important to clot off because of a mistake.  The clot doctor spoke to me over the phone and explained that on September 4th when Hope's blood was tested, her levels were too high.  They simply forgot to change her dose before today and apologized as it could have caused a major bleed.  Seriously?  That could have killed Hope and instead of coming to see her, they called in an order to change her meds 9 days later, and never bothered to examine her?  I was unhappy to say the least, you seriously have to be on guard at all times.

We have been so blessed by the outpouring of love on our family.  Someone dropped food off at the RMH for us today, I never even heard who it was...but thank you!  Our neighbour is working hard to kill all the wasps that live in the cement stairs of our home in Calgary, that can't be a fun job.  Friends of ours that live on Maui have moved their family here to Edmonton temporarily to help us care for Sadie each day, who would leave Maui for Edmonton?  We have received so many encouraging words and feel truly overwhelmed by the immense love and care that comes our way.  For all the times we fail to express it fully, Thank You!

For those that are not on Facebook....
A friend also started this sign up sheet for prayer.  We are trying to organize a week of constant prayer for Hope as we ask God for a miracle in her life.  Please feel free to sign up if you'd like.

Wednesday, 12 September 2012

No Guts, No Glory

Last night Hope was put back on oxygen, she wasn't able to keep her saturation levels high enough and needed a little help.  She's on a low level and will hopefully get stronger over time, but needs the help right now.  They started Hope back on bolus feeds to see if her stomach could handle two hours worth of her feed at once.  She has been on continuous feeds for weeks now and we weren't sure how she would do.  She was a star and tolerated her feeds very well.  It was clearly more difficult for her body to handle the larger volume of food and she slept almost the entire day.

The cardiologist spoke with the GI doctor and they discussed whether or not it was safe enough to do Hope's hernia repair.  They have decided to go forward with it and plan to do some temporary solutions to reduce the fluid levels in Hope's abdomen before she goes into the OR.  If it works, it will be temporary and her abdomen will refill over time.  The cardiologist then spoke with the General Surgery doctor that is supposed to do the actual hernia repair.  Only in our crazy life would this happen, but one or more of the OR's at the hospital have been flooded and are not currently operating.  This means that OR time is limited and hard to get.  As a result, we're not sure how long it will be before they can get Hope booked in for her hernia repair.  I can't help but laugh at the craziness of our journey some days.  This surgery will be risky and although I know she needs it, it's going to be a tough day to let her go into that OR when they aren't sure how Hope will respond.  They worry she won't heal properly and will continue to drain fluid for much too long.  We are going to obviously pray against this and believe God to be in control through it all.

Today was a tough day for me emotionally.  I have always had a confidence that Hope was going to be okay and that although this journey is awful, she would live to tell about it.  It's not that I'm now confident that she won't, I'm just not sure what will happen anymore.  This is not a lack of faith in God's ability to spare her at all.  I know that God is able to do this and more, I'm just not confident that it's the plan He has for Hope's life.  Nobody can know for sure what God has planned for each one of our lives.  Through this journey I have been reminded that this world is not our home.  God has created us for an eternal purpose and our lives on this earth are nothing in comparison to eternity in Heaven.  The entire point of us being here on earth is to bring glory to God.  I am amazed that my 5 month old daughter has done just that.  God has been glorified through her struggle and many people have grown in their walks with God as a result.  It's hard to believe that a baby, only 5 months old, has already fulfilled God's very purpose in her life!  What I battle with now is whether God will receive more glory in her healing or in her death.  I simply don't know, only God knows that and yet I believe He has the best plan.  Even typing the word death is terrible for me, the idea of losing Hope is simply too painful to even imagine.  Losing a child is the most terrible thing I could think of in my life.  

I believe in God and his perfect plan for our lives.  I would be crushed and in utter despair, but I know that if God ever chose to take Hope, it would be because He would receive more glory through her death.  This world is temporary and Hell is forever, I can't even imagine forever with my simple brain.  If one person comes to know Christ through Hope's story and is spared from an eternity in Hell, her very existence has truly saved another's life.  We talk about living for the moment, but the moment ends and we have to think about what happens when it does.  Where are you going to spend your forever?  If you've been following Hope's story and you don't know, I truly pray for you specifically, that you would come to know the creator of the universe.  He is the giver of life and loves us more than anyone could ever imagine, how can we not trust that his plans are greater than our own?

Yes, my heart aches and my eyes flood with tears as I type this and it's difficult to express.  I just want everyone to know that I love Jesus Christ and not just when He gives me the things that I want, I will love Him either way and trust in his perfect plan for my family.  That being said, I will beg him to spare Hope's life until her last breath or my own.  I want to die an old woman and still see Hope living her life and sharing her miraculous story, I hope that's what the future holds.

Tuesday, 11 September 2012

Raising Up An Army

Time just did not allow today for Amy to write an update,'s me again, Hope's Nana.

I have been overwhelmed today by the way that God is raising up an army of people who are getting on their knees and praying for God to bring healing to little Hope.  We are so touched and encouraged by the people who are posting links to this blog and spreading the word that this little girl is in need of some serious intercession!   We believe that God's power is released to move in mighty ways when people bring their petitions to him and pray in faith for Him to intervene and bring glory to His Name.  We also believe that our God is a God of miracles and that He is the same God today that calmed the sea, that made the lame walk and the blind to see.  We are in awe of our great God and the way He is laying Hope on the hearts of so many to pray.  We are forever grateful.

Today was another day of waiting.......we knew that the weekly meeting of the cardiologists and surgeons was taking place where Hope would be presented again to be discussed as a team.  Late in the day, the head of cardiology came to tell us the results of that meeting.  Basically, it is felt that Hope, first of all, needs the hernia repair done.  I won't go into all the details, but they are worried about it making further complications for her if left untreated.  However, the surgery could aggravate her ascites even more and pose a problem with drainage of the fluid in her abdomen (not being able to stop the drainage once it starts), as well as the possible strain on her heart.  However, Dr. Dyck is going to consult with General Surgery and see if they would agree to do the surgery in spite of the risks in order to allow Hope the chance to get her closer to the Glenn.  If the surgery was a success and she tolerated it well, they would then give her some time to see if perhaps the ascites would heal on its own.  This normally could happen over the period of a couple of years, but if her body could repair itself quickly, this would improve the chances of the ascites not returning at a later time and reduce the risks of the Glenn considerably.  They would then, look at doing the Glenn when she was 6 months old or even later, possibly up to 7 or 8 months if her heart function was still adequate.  Yesterday, Amy overhead Hope's surgeon tell Dr. Dyck that he would not operate on Hope and do the Glenn because he didn't think she would make it.   Today, however, Dr. Ross has reconsidered (after the team meeting) and has agreed to do the Glenn if she did well with her hernia repair and was given some time for the ascites to improve.  This was the hope for Hope that we so desperately needed to hear!  They are not giving up on Hope!  Although this was encouraging to hear, Hope still has some major hurdles to overcome over the coming weeks and we are mindful of her great need for prayer.

Things you can pray for:......

- that the general surgery doctor would be willing to operate on Hope's hernia and that it would be done at the best time for Hope's little body in order to tolerate it well

- that there would be no complications with the abdominal fluid or ascites or clotting issues

- that her ascites would miraculously disappear and be healed completely in record time!!

- that she would remain free of infection (her swabs came back negative for any virus or infection and her cough is improving, however, today they moved in a young boy into Hope's room that had a collapsed lung from a respiratory infection - 2 hours later they moved Hope out after realizing that he was highly infectious and needed to be isolated!!)

- that she would not develop any further clots

- that God would protect her body against any further additional issues, complications or medical mishaps

We realize that Hope has a lot of obstacles ahead and that it is going to take a miracle for her to overcome all of these and be able to come through the Glenn with flying colors!  But, we are asking God for the impossible and entrusting Him with her every need.  God IS able to do exceedingly more than we can ever dream or imagine and so that is exactly what we are asking Him for.......more than we can ever dream or imagine!  We hold dear to His promises and continue to ask God to give us HOPE!

Monday, 10 September 2012

Depressing Details

Tonight we received a ton of information, all discouraging.  There are a million possibilities and details, all of which are over our head medically and too difficult for me to explain again.  The details don't really matter, the point is, we got a lot of bad news all at once.

What's important is how you can pray.  We need a miracle like we have never needed a miracle before. If Hope had a whole heart, her ability to deal with all her 'extra' problems would be much better.  The small problems are HUGE issues when you add Hope's heart condition to the equation.  The ascites in Hope's abdomen is one of those huge issues.  If it does not repair on it's own immediately, it could take away Hope's potential for all of the surgeries she needs.

My dream would be to wake up tomorrow with Hope's ascites completely gone and her abdomen no longer distended.  At this point no one wants to touch Hope, none of the surgeons in cardiology, general surgery or GI.  They all see her as a ticking time bomb that no one wants to touch and be responsible for.  If anything is going to happen and move forward, we're going to have to fight for it to be done and take responsibility on ourselves if it's unsuccessful.  This is the most horrible feeling I've ever had in my life.  How do we know, as non-medically trained people, what to fight for?  Could we live with our decision if we pushed for something that turned out poorly, or didn't push for something and Hope suffered as a result?

I am completely broken, this has got to be my breaking point.  Where is the light at the end of the tunnel or the level where God steps in and decides you can't handle anymore?  I feel like one of the Israelites in the Bible, walking through the dessert in search of the promised land.  I stand amongst them and yell, "How long oh Lord?"

We need wisdom and discernment, we need massive wisdom for our medical team.  We want them to tell us what has to be done and to make the best decisions for Hope.  We are heart broken and completely overwhelmed.  We know that so many of you pray tirelessly for Hope and our family.  I will go to no end in the fight for my daughter, so I ask you to continue praying.  We need a miracle, one that only God could give.

Friday, 7 September 2012

A Test in Trust

I'm all alone in the Ronald McDonald House, I left my mom at the hospital with Hope and escaped.  I was so disappointed, frustrated and sad after rounds this morning.  I simply couldn't stay any longer and needed to get some fresh air and some time alone to think through some things.

This morning we were told that the doctors are not willing to operate until they can figure out what is wrong with Hope's stomach, and resolve it.  They also want to get the results back from her blood work on whether or not she has a clotting abnormality.  The results will take at least two full weeks to return.

We don't have to be in Edmonton, unless they plan to operate.  Now that the heart cath has been completed, we could return to Calgary Children's hospital until it's time for her surgery.  We simply did not feel comfortable there during our last stay and didn't feel like we were getting any closer to a solution.  Once it was decided that they were not able to do any more for Hope, they sent us here.  I made it clear to the doctors this morning that we are NOT leaving until she has her surgery.  I understand that she needs to be stable to have it done, that's fine.  We are willing to stay here as long as it takes for GI to figure out what to do for Hope and for her clotting to be investigated as well.  We get a higher level of care here and they seem to be more thorough with her care.  Once her Glenn has been done, we are happy to return to Calgary.  The cardiologists are amazing in Calgary as well and will do an excellent job following Hope.  We just don't find that the different teams in Calgary communicate well and Hope seems to sit around waiting all day.  Things happen faster here and we feel a lot more informed in the process.

Shawn put it well on the phone today while I was venting, "the only consistent things in Hope's care is the inconsistency of information we receive."  It's really true and very frustrating.  GI came to see Hope in the afternoon today, this time the head of GI was there.  He looked at Hope and in a few minutes was able to give us the answers that we have been waiting for.  It took 3 weeks and I don't know how many doctors, but they finally gave us a diagnosis.  Hope has a hernia that is causing her lady parts to be very swollen.  We knew she had one in her belly button, now we know that she has two!  This means another surgery for Hope, someone is supposed to come see us soon to tell us when that surgery will be done and what it will require.  Her swollen tummy is a result of her liver clot, this was caused by the infection she had before her first surgery from the central line in her belly button.  There is a chance that this could resolve on its own, but will require surgery if it doesn't.  I think we need some serious prayer, how many surgeries is this little girl going to have?  I'm not sure I can handle too many more.  The good news is, we have some answers.  The GI specialist does not think that Hope's stomach issues should delay her second surgery.  He doesn't see how they will be a problem for the heart surgery and is going to pass that message on to cardiology.  We need to pray that everyone agrees and we can cross this off the list of reasons they won't operate on her heart.

Now we simply continue waiting.  At this point I believe we still need to wait for the blood test results on the clotting.  Things change all the time here and we could be told we don't need to wait or that they only take 3 hours to never know what will happen!  They are going to begin some treatments for Hope's swollen tummy and see if they can make an impact without surgery.  Please pray that the medications would make a HUGE impact and that she'll begin to heal without surgery.  I feel so badly for Hope some days, why does she keep getting more problems loaded onto her?  I have to believe that God has a huge plan for her life and that he is already using it to impact so many.

I really don't like it here, and yet I'm willing to stay as long as it takes to make my baby girl stronger.  I believe that only God could give me that strength and the trust in his perfect plan and will for her life.  Shawn isn't a fan of this place either, and he encourages me to fight for our girl and is fine with me pulling a PETA move and chaining myself to her bed! (not that I would!)  I felt strongly this morning that God was giving us the boldness that was required to fight for Hope.  Running away from the hospital to get some time to recharge is always important.  Hopefully I wake up ready for another day tomorrow.

Thursday, 6 September 2012

Chips for Life!

After the post last night I called the hospital to see how Hope's extubation went.  In true Hope fashion, it did not go well.  They were able to remove the central line from her blue leg and had the IV in her foot running a blood thinner to keep it from clotting off.  They were all ready to extubate her, even had her on room air, and then she coughed.  It sounds like a small thing, but she coughed up some mucus that clogged her tube and blocked her airway.  Her sats went down to 22 (her average is 75 and yours is likely 100).  As a result, they had to bag her every hour through the night and decided to extubate her in the morning instead.

Hope was extubated at 8am this morning and remains on a high dose of oxygen, but doesn't have the horrible tube down her throat.  When the doctors came at rounds and told us that Hope would be moved up the ward today, my mommy claws came out and I told them I wasn't comfortable with that until an ultrasound was done on her leg and the surgeon came to see me.  I think they remember me from last time, so the ultrasound was ordered.  By the time the ultrasound happened it was already 2pm and it took a full hour as Hope doesn't lay very still.  I think she was having trouble as she came off the morphine and she was also in a bit of pain.  She was restless all day and didn't seem like herself.  I overheard the ultrasound tech on the phone with the radiologist before she left.  I've learned to eavesdrop when they discuss Hope, as they never tell you everything and it's easier to get the information you want.  She was informing the radiologist of all the clots in Hope's leg.  This was obviously very disappointing news.  We have yet to meet with the actual doctors about this and don't know how bad it is or if it is fully clotted off at this point.  That only leaves 2 remaining limbs with access to her heart for a central line, she still has at least 2 surgeries left and we are fearful that she will continue to clot off her main arteries.  Please pray for a miracle.  Hope is being worked up for a clotting disorder here in Edmonton.  If she has it, she will remain on her blood thinner injections for the rest of her life.

After the ultrasound, the nurse was getting Hope's bed ready for transport to the ward and I spotted the surgeon!  I had him brought over and asked my main question, "will you do the Glenn and, if so,  when?"  He agreed that it should be done while we're here and is going to get her scheduled.  We are not getting too excited until she IS scheduled as things change quickly around here.  We may get more information tomorrow morning after they do cardiac rounds.  Dr. Ross saw a note I had written on Hope's board on the wall in PICU.  Under "goals" I had written, "to convince Dr. Ross to do the Glenn"(that's her second surgery).  He took the pen and wrote, "OK-for a bag of chips!"  I might head to Costco and buy him a life time supply!

Once Hope got up to the ward she was so tired and seemed more relaxed.  She fell asleep and finally seemed to rest.  We went back to the house for dinner and my mom returned after dinner so Shawn and I could put Sadie to bed.  I'll head back to the hospital soon to spend the night.  I'm praying her Glenn happens early next week and I don't have to live in her room for too long.  We seem to continually get new 'surprises' with Hope's condition.  I truly pray that her Glenn is routine and there is nothing out of the ordinary that happens.  I guess when you're extraordinary like Hope, you just can't do ordinary any longer!

Wednesday, 5 September 2012

Reasons for Everything

Our world is full of stuff that seems unfair and ugly, and it's hard to understand why things happen sometimes.  I may never fully understand why my little girl was only given the right side of her heart. Some days, I feel like I get a tiny glimpse of why we've hit some of the bumps in her journey and I am reminded that God is in control at all times.

Hope was taken for her heart cath at 1pm.  They let me take Hope right into the OR and they put her to sleep in my arms.  It was incredibly beautiful and disturbing at the same time, if that makes sense. She was given the first drug and her eyes glazed over and she started to suck on her soother very slowly.  After the second drug she made a funny cough and started to close her eyes, she was completely out after the third.  It sounds terrible, but I felt like I was watching a dog being put down. It was nice to know that she never cried or felt alone.  She fell asleep while I still held her.

Hope was under for 2 hours before we were called to come back and meet the doctor.  Waiting in the little room for the doctor to come in is never fun.  You try to stay positive and also prepare yourself for the worst.  The doctor is so used to informing parents of the findings, that everything comes out in such a routine manner.  She tells you that your child lost a lot of blood and had to have a blood transfusion in the same tone that the Subway employee tells you they don't have light mayonnaise.  It was so good for Hope that this cath was done when it was done, and it wouldn't have been done if she wasn't sick and brought to Edmonton from Calgary.  We praise God for providing a way for her to get here and have the cath done.  They found a severe obstruction in her aortic arch that was causing heart failure.  They had ruled it out and told us she wasn't in heart failure, but she was.  They were able to inflate a balloon in the arch to expand it and remove the obstruction.  This stops the heart failure and helps her blood to flow more correctly.

During the procedure, Hope's PICC line blew and was lost.  Thankfully, it happened near the end and  it didn't cause too many problems.  They used the cath entry point in her leg (her femural artery) to insert a new central line to her heart.  They checked all of the pressures in Hope's heart and have confirmed that she is a perfect candidate for the Glenn!!  Praise God for that amazing news.  The surgeons will see her tomorrow morning and decide when they will operate.  We are really hoping that they'll decide to do it ASAP and would appreciate your prayers as we await that decision.

Hope is back in the PICU now and is still intubated and under heavy sedation.  They plan to extubate her at 10pm this evening if all goes well and will pull her central line from her leg as well.  We've asked for the line to be pulled to avoid infection and clotting.  They managed to get an IV into her other foot and we would love you to pray that it holds and she doesn't need to be poked a million times more.  They are having a little problem with her leg that had the central line in it.  It was completely dark purple and cold when she got back to the PICU as it received no circulation during the cath procedure.  I felt a little nervous and worried that she would lose her leg, not what she needs! It appears to be slowly improving and they hope to see it improve further after her central line is removed.  Please pray that there would be no permanent damage and that the blood would begin to flow properly through the right leg again.
This is a picture to show you the colour of her right leg.  It's disturbing but hopefully it sends you to your knees!

Please join us in praying against any damage from the procedure that has not been discovered yet; clotting, infection or further damage to her vocal chords from intubation.  She has been through so much in the last few days and is being such a trooper.  Her stomach is still distended, so please continue to pray for wisdom as the doctors seek out a diagnosis for this.

Hope is in the same bed in the PICU that she was in after her Norwood surgery.  It feels a little odd to be back there.  We think a lot about our first time through this and I think a lot about Lincoln.  The staff still ask about his family and seem to have a smile as they talk about him.  He has made an impact in this world that is not forgotten and that is beautiful to me.

It feels good to know that Hope is in good hands tonight, they're going to give her a sedative tonight to help her sleep.  Her heart needs the rest after such a long day and they don't want to push her.  I'll sleep well knowing that she isn't wondering where we are.  We feel amazingly blessed to know that she will move forward and receive the Glenn, hopefully soon!  Thank you for walking this road with us.

Tuesday, 4 September 2012

Heart Cath Tomorrow??

Amy has spent almost all day at the hospital and has not been able to post an update.  So, it's Charlotte (Amy's mom) here again!

It's been a full day for Hope - she had an echo, an ultrasound, and bloodwork three times!!  Twice from her head (one was a failed attempt) and once from her neck.   After the failed attempt to get a good vein   that wouldn't clot off shortly after they got it, a doctor was called in who apparently has an unbeaten track record in getting blood.  He used to be a veterinarian and used to get blood samples from birds so even the most challenging patient (like Hope!) is no problem for him!  He was literally in and out of the room in 30 seconds!  Wish he could come every time she needs blood!!

The extra bloodwork was necessary because, at the end of the day, they informed us that they were doing the heart catheter tomorrow.  Previously, we were told that they wanted to get her stomach issues all sorted out because it may result in an inaccurate read of her pressures on the heart cath.  Apparently, that thinking has changed and she is scheduled in the third slot for tomorrow, which means some time around noon.  We were told that the only snag would be if there wasn't a bed available in the PICU for her after the cath.  After her bad reaction to the MRI, they are a little nervous to just take her back to the ward and would like to monitor her closely for several hours afterwards just to make sure she is okay.

She was taken off oxygen today and seems to be tolerating that well.  Her protein levels have come up to the lower end of normal range, and she had lost weight since yesterday so the docs were pleased that, even though they still don't have a diagnosis, the treatment seems to be bringing some gradual improvement in her symptoms (the weight loss means the diuretics are working).

We are all very anxious for the results of the heart catheterization, as this will be the deciding factor on whether or not she is a good candidate for the Glenn surgery and if so, when that will be.  Please join us in praying that the procedure will go very well and that there will be no complications whatsoever.  Pray that the results will be good and show that Hope is a perfect candidate for her 2nd surgery and that the timing for that surgery will be at the exact time that is best for Hope's little body.  We know God's timing is perfect and so, we look to Him for the outcome and lean on His wisdom.  We are so grateful that He sees the big picture, even when it's hard for all of us to navigate through the fog of the "unknown".

Monday, 3 September 2012

Every Centimeter Counts!

It's me again.....Charlotte (Amy's mom)...... Amy is sleeping at the hospital with Hope tonight and there is no wireless there so she has asked me to update the blog for her.....

Today was a quiet day - no tests or procedures, and not much change in Hope's meds or care.  On a positive note, Hope's tummy did not increase in size and even measured 1 cm. smaller today!!  Hopefully, the new diuretic and change in her formula is helping!  She's got a long way to go yet but the GI docs were pleased that she hadn't gotten any bigger. 

Tonight, they noticed that Hope was a bit congested and were concerned that she may have a cold.  It was mentioned that, even if her stomach improved dramatically, they would not proceed with the heart cath if she had any hint of a cold or infection.  Please pray that she will be able to fight off whatever has made her stuffy and that she will not have any further reasons for delaying the heart cath.  If her stomach issues subside and she is clear of infection, the heart cath could possibly be later this week. 

Tomorrow will be another echo and possibly some more bloodwork.  They are now taking Hope's blood from her head, as that has been the only place they have been able to get a vein.  I have to leave the room when they do this, as I just can't bear to watch and listen to Hope cry her eyes out.  My heart breaks for her and for Shawn and Amy who helplessly watch their little girl struggle and fight through the whole process.  It's terrible to watch your child suffer - there is just nothing worse. 

After being here and experiencing everything first hand again, I am reminded afresh of how much  Shawn and Amy and Sadie really need your prayers as well.   Tomorrow Shawn returns to work at the office here in Edmonton.  Pray for him as he balances work during the day and spending time between Sadie at the RMH and Hope at the hospital in the evenings.  Pray for Amy as she will be sleeping at the hospital now during the night, while Hope is on the ward.  She is also battling a toothache that has resulted from the marathon dental appt. she had a couple of weeks ago.  She feels she likely needs a root canal but has no idea how she will ever fit that in!!  Sadie is definitely feeling the disruption of normal routines and the general strain of being away from home and living again at the RMH.  She seems to reach her breaking point in the day and then has a total meltdown when the littlest of things goes wrong!  Poor thing, this is all so hard on her as well and she really needs your prayers. 

These are not easy days, but in the midst of the upheaval and uncertainty, God always reminds us that He is ever-present and providing for each and every need.  Tonight, as we were sitting at the table having dinner, someone that we have never met came to the RMH and brought us several meals and snacks for the next few days!!  This is such a huge blessing as making dinner after a full day at the hospital is almost the last thing that you want to think about!  We were blown away, again, by God's amazing provision and how He has lavished us with His goodness!  He is loving us through so many people and we are so humbled by His amazing love and kindness towards us.  What a great God we have looking after us!! 

I sit sometimes and try and think of more creative ways of thanking you all for praying for Hope and her family.  There is just no other way to express to you all how much we covet and value your prayers.  We know, without a doubt, that there is power in prayer and that God moves when people pray.  As God lays it on your heart to pray and plead for this little girl's life, please know that we feel privileged and blessed that you are continuing to bring her to the foot of the throne and asking God to heal and restore and strengthen her little body.  We continue to entrust her into His capable hands.

Sunday, 2 September 2012

In with the Masses

Today Hope was moved into the regular ward after she finished her final dose of Milrinone.  If this meant we were moving closer to going home, it might be exciting.  For us, it is a step in the wrong direction.  We will now be stuck in the ward until the doctors figure out what's going on with her stomach.  Then we have to begin the more difficult part of our journey; the heart cath and hopefully the second surgery.

The other disadvantage to the ward is our nursing care.  The nurses are stretched very thin on the ward and aren't able to give each child the attention they need.  It's not really fair for anyone; the child, the nurses or the parents.  As a result, we have to be at the hospital 24 hours a day and take turns sleeping there.  It's even worse than Calgary as the rooms are shared.  Even if Hope sleeps through the night, there's a chance that the other child will keep you up all night.  Please pray that Hope gets a very quiet roommate and that we're able to get through this time on the ward.  Please pray for wisdom for the GI doctors in Edmonton as well as the Cardiology team.

Holly was moved up to ICE today and was Hope's neighbour for a couple of hours.  It would have been amazing to be side by side with our friends.  We already had another friend across from us, it makes the time go faster.  At least we're all on the same floor and can see more of each other this way.

Sadie is still teething and was terribly grumpy today.  She is finally over her fever and we're hoping it stays that way.  I have no idea what I would do if I was alone with Sadie in her current state.  My mom and I tried everything while Shawn was at the hospital.  Hopefully she gets over this quickly as it can be very exhausting and we know it's not her fault.

Shawn plans to return to work next week, with Hope in the ward it makes sense.  I wish he was lazy and would stay at the hospital with me.  At the same time, I respect his commitment to his job and admire his endurance during such a tiring time.  Please pray for us as we balance that new dynamic.  Whoever is at the hospital will be alone all day while the other person is with Sadie.

Thank you for continuing to journey with us.

Saturday, 1 September 2012

The Waiting Game

The waiting continues, as not much has changed with Hope since our last update.  The doctors are starting to wean Hope off of the Milrinone and put her back on her regular heart meds.  They had her on both of them for a time, but it was causing her blood pressure to be too low.  They took a urine and stool sample to check for protein, as this would have shown if her nutrients were leaking and not absorbing.  She tested negative for protein in her urine and we're still waiting for the results from her stool.  The OT made a splint for Hope's arm to keep it straight - this is to avoid losing the PICC line.  So far it seems to be working and the PICC line is working well, so we're hoping we don't lose it as her veins are terrible.

Today the GI team switched Hope's diuretic meds in order to see if it would impact her swollen belly.  We haven't noticed anything so far, but are hoping it will start working.  We are truly praying that whatever is going on in her tummy would resolve over the weekend.  If she is still distended next week, they're going to continue delaying the heart cath and the second surgery.  We need her to get better, or the doctors to figure out why this is happening.

Sadie is back with us and seems happy to be around her family.  She asks often about Hope, but we've decided to keep her away from Hope until we're sure she's not carrying anything.  Sadie is running a very low fever as her molars come through.  She seems a lot happier today and has her appetite back, but we just don't want to take the risk.

Hope being back at the hospital here is tough.  When we were back in Calgary, it felt like we got to live at our house for awhile.  Now that we've returned, I feel like we never left and our time at home seems like it disappeared.  It feels much too normal to be here, everything is too deja vu for me.  It can be really boring here as well, as I find myself looking for games on my phone or trying to find something interesting on Hope's tiny tv.  The hours go by slowly some days and yet we don't want Hope to sit in her bed all alone if we leave.  We know from last time that it's easy to burn out here, so we're trying to take turns, take breaks and remember to take care of ourselves as well.

This is also a very sad place.  In Calgary I am reminded about the heartache of other families each time I go to the hospital with Hope.  When we go home, I don't have to live in that depressing environment though.  When we're here, we live with families that are all hurting for their children.  At the hospital we are surrounded by families that ache as well, and it truly breaks my heart.  We live in a fallen world and there is so much evidence of that here.  Please pray for us, that we would be an encouragement to others while we're here.  Also pray that we would stay positive, even when we see a lot of families that are having their hope stripped away.