Sunday, 30 December 2012

Wisdom Please

This morning we had the blessing of attending our church.  The pastor spoke about wisdom and I was struck by something.  I ask others to pray that the doctors would have wisdom as they care for Hope and I pray this myself.  I often fail to pray that God would give me wisdom.  I want to commit to praying that God would give Shawn and I wisdom as we advocate for Hope.  No one knows Hope as well as we do, and we need wisdom as we fight for the best care for her.  It's a good lesson, something we should all be doing more.

Hope had another good day.  She continues to have a lot of health issues with long term consequences.  We celebrate the fact that day to day, she is happier and is enjoyable to spend time with.  It does not mean that we do not continue to have a lot of hurdles ahead, as we live with the reality that Hope is still in serious condition.  It does give us an opportunity, however, to not think about it constantly though.  

We have started trying to give Hope water by bottle in very small amounts.  She is doing so well with it and we are excited to start trying some formula tomorrow.  If we can get Hope eating even a little by mouth, we can move away from the liquid nutrients at a faster pace.  I think the day Hope is finally off of these liquid nutrients, I'm going to celebrate with a cupcake!

Tomorrow is the last day of 2012.  We actually have a reason to celebrate the New Year this year.  I usually care very little about New Years Eve and am often happy to sit at home with a movie and to go to bed early.  This year I find it slightly more exciting, Hope survived 2012 and is going to see 2013, this is a reason to celebrate.  It's another milestone in her life, and once again we praise God for this miracle.


Saturday, 29 December 2012

Feed the Monster

Hope randomly spikes fevers and throws up every 12 hours or so.  She is still much happier than she's been and smiles on a more regular basis.  She's grabbing her toys and much more interactive.  Today the cardiologist talked to us about walking the difficult road and pushing through.  We need to get Hope eating and her problems could simply be her body adjusting to the change.  There is a chance that something is wrong with her stomach, but we're going to assume there is not.  We'll up Hope's feeds 1ml per day and continue to move forward and give her time to adjust to the change.  Please pray that her little body will adjust quickly and we'll be able to get her eating.

It has been so nice to have Shawn home from work over the holidays, and a friend visiting.  It lightens the load and Shawn was able to spend most of today with Hope.  This is something he isn't always able to do and I know Hope enjoys the extra cuddles from Daddy.

The doctors are fairly sure that Hope's line is still hiding some infection.  They will have to put her back on strong antibiotics if she continues to spike fevers.  This is pushing them to get her eating and remove the line more quickly.  The last ultrasound of the clot, at the end of the line, showed that it is stuck to the wall of the vein.  It is still attached to the end of the line, but is less likely to move when the line is pulled because of its new foundation on the vein wall.  We praise God for that and continue to pray that it stays put when we're finally able to pull the line.  Please keep this concern in your prayers as it could cause severe damage if it moves.

The cardiologist is pretty sure that the heart cath will not take place unless we are absolutely forced to do it.  This is better for Hope long term, as long as they are right!  Please pray that if she needs the heart cath, she'll make it very easy for them to see and we won't miss something important in her little body.

As a family, we are extremely blessed by others.  We would not be standing without all of you standing around us.  It truly takes an army to stay on top of Hope's care and other important aspects of our lives.  We struggle with the fact that there is no end to Hope's hospitalization in sight.  We are desperate for this all to be over and to bring our girl home.  At the same time, with the help of so many, we are able to continue down this long and difficult road.  We still find time to smile, to get the sleep we need and to enjoy life.  It makes a huge difference and is so important.  Thank you to everyone that volunteers to sit with Hope, feed our family and especially to those that give up sleep to have a sleepover with our precious girl.

Thursday, 27 December 2012

A Tooth!!

Today we celebrate another first in Hope's life, her first tooth!  It is just poking through and it's always fun to celebrate "normal" things that she does after all the "not so normal" things she does.  I'm hoping it explains the fevers and diarrhea but the doctors don't think that's the cause.  Although, Sadie always had runny poops and fevers with teething so Dr. Mom is still not sure, but thinks it has contributed at least.

Hope has been doing something a little different for the last two days.  She will randomly drop in oxygen saturations from the 80's to the 50's.  This is not normal and is a true (accurate) reading on the monitor.  Hope will likely have another echo to see if something in the heart is "shunting" or kinking to stop to the blood flow.  This may be Hope's way of forcing them to do a heart cath.  Please pray that this either stops immediately, or that whatever is causing it will show up clearly when they go looking for a source.

Today was a nice day with Hope and we were able to spend a lot of time there as a family as well.  Sadie is such a good girl and does fairly well at the hospital.  Our nurses were fantastic and Hope was happy most of the day.  We cherish the time we are able to spend with our little ladies, even if it has to be in the hospital.

Please be praying for our doctors as they make important decisions about Hope's next steps.  Today they decided to up Hope's feeds by 1ml every 48 hours.  If this is successful, it will take Hope until February to get to her full feeds.  That is assuming we don't run into any problems or set backs.  We are currently at 7mls an hour and Hope seems to be tolerating it.  As for the PICC line, she continues to cry when any meds are put through it.  I'm not sure it's going to last until February, we truly need a miracle.  Good thing we believe in a God of miracles!

Wednesday, 26 December 2012

No Edmonton??

Things are forever changing in our world.  Today the cardiologist was saying that they're thinking they might just wait on Hope's heart cath now.  She is doing better medically and although they cannot explain the fluid on the her lungs, if they can control it, they're going to wait.  The procedure (heart cath) is risky for Hope and the chance of clotting is so high that we hate to use one of her access points if we don't absolutely have to.  I'm feeling okay about the idea of waiting, I just hope we don't end up having to do it in a few weeks and delay us getting home.

Hope is smiling more once again, is sleeping at night and taking longer naps during the day.  Previously she only took short cat naps and was often very grumpy, likely being overtired was the cause.  We are still only at 6 mls an hour of feed, but they plan to increase her feeds a bit this week to see how she does.  We really need to get Hope off the liquid nutrients and get rid of the PICC line.  Each time the nurse flushes the line, Hope screams.  We are running out of time and need to get to a place where we are no longer relying on it.  In order to protect the line, the nurses are no longer allowed to draw blood off of it.  Hope is now getting poked for blood twice a week minimum.

A huge praise report, our insurance company has finally approved us to have our wonderful home care nurse in the hospital with Hope.  Previously they would not allow us to pay our nurse while Hope was technically under nursing care at the hospital.  They have clearly never gone to the hospital to see how stretched the nurses truly are.  If they did, they would see that having consistent care for Hope is very important and parents can not be there all the time.  This will take some of the pressure off of Shawn and me.  We are really excited to have her start working with our family again, Hope loves her!

Hope has a few fun visitors coming for a visit this week, that's always nice for me!  It makes the hospital much more exciting when I have some good company, other than Hope.  Thank you for continuing to pray for Hope.  Please pray for her doctors, that they would have wisdom in making a final decision about her heart cath.

Tuesday, 25 December 2012

Merry Christmas

Christmas eve started with me waking up early.  I missed Hope like crazy after not seeing her on the 23rd, I almost drove over in the night when I woke up!  It was a difficult task to stay away from one of my girls, but also just what I needed to stop the burn out.  I was so excited to get to the hospital and see Hope smiling.  She is such a happy girl these days and is starting to develop more once again.

I headed home to see Shawn and Sadie in the later afternoon when a friend arrived.  I simply had not had my fill of Hope yet and Sadie wanted to see her sister, so we came back!  We had a quick visit and then headed off to Oma and Opa's church while Hope snuggled with one of our friends.  Only the sweetest person offers to spend Christmas Eve overnight with Hope so we could have some time with Sadie in a more fun environment.

After church we were off to Oma and Opa's for dinner and presents.  It was nice to have time as a family, but I truly missed Hope.  It made me ache for my friends that have lost a child.  When one of the little ones isn't there, things just don't feel complete.  I am thankful that although Hope is stuck in the hospital, she is still alive.  I am often afraid of the future, I fear losing Hope and the pain of moving forward without her.  It was a reminder to pray for the families that have had to do this already.

Sadie got home late, fast asleep in her carseat.  We plunked her into bed, quickly filled the stockings and were off to bed ourselves.  I was up first, and had a chance to get some things ready to be sure we could get back to see Hope before it was late in the day.  Sadie woke up around 9:15 (she's a wonderful child!) and was so excited to wake up Daddy and see if Santa had come.

Sadie played with new toys and was so excited about every detail.  It was an incredible reminder that less is often more.  She was not overwhelmed by the piles of toys, there were no piles.  She was able to play with each of the things she got and truly appreciate them.  It was the chance to be together that we loved, not the things we opened.

We then hopped in the car and rushed over to see Hope.  She looked beautiful in her dress, we had Sadie in a matching dress!  She was so happy once again and has had two good nights sleep in a row.  Hopefully that continues tonight for me!  Sadie found more presents here at the hospital that were donated for the families here.  She got a big doll house and had lots of fun playing with it all.  Hope was spoiled once again as well and has no shortage of fun things to explore in her crib.

Thanks to the kindness of others, we were able to enjoy a nice turkey dinner at the hospital!  The food was incredible and we were so touched by the effort of another family on Christmas.  It makes me want to adopt a family in the hospital every year and bring them a turkey dinner.  What a blessing for them and a good reminder for me of how blessed I am.  Sadie and Daddy have headed over to Oma and Opa's for a break from the hospital and Hope is having a nice long nap in her crib beside me.  What a gift to have her here with us for Christmas.  In this moment, nothing else seems to matter.

Sunday, 23 December 2012

24/7 Prayer for Hope

I failed to post this earlier...sorry!  I have taken a day of rest from the hospital and have nothing to report!  I've only heard that Hope is doing well, has been passing out smiles and fairly settled today.  For anyone interested, 24/7 prayer is happening for Hope again.  Here is the sign up sheet:

https://docs.google.com/spreadsheet/ccc?key=0Ap7fUXmVakGpdFZMemlFNjNWNDJwcGQ4RFpOdm9USWc

Thank you to everyone that is praying for our girl, the best Christmas gift for our family.

Normal.

Normal.  I'm not even sure what that looks like for us anymore but I am attempting to achieve it this weekend.  I love Hope dearly and truly miss her whenever we're apart.  I have felt my sanity slipping away this past week and made the tough decision to take a break.  Today I only spent 3.5 hours with Hope at the hospital.  Tomorrow Shawn will spend some time with her, but she will be with volunteers the rest of the day and I will have a sabbath.  I'm not taking a break from Hope, but from the hospital.  I love spending time with her, but find the environment very difficult at times.  This will allow me to come back on Monday morning with new energy, I hope!

Shawn and I are very blessed.  Tonight was going to be his first night at the hospital in a long time.  Sleep is so important to him and he really struggles after a poor sleep.  He had agreed to stay with Hope tonight and let me stay home with Sadie.  More than one person stepped up and offered to take his place.  So tonight, after putting Sadie to bed and having a friend sit in our home, we went on a date.  Normal.

This morning when I got up to the sound of Sadie playing in her room, I felt relaxed.  I spent the morning hanging out with her, cooked lunch for my family in my own kitchen even.  We spent the afternoon as a family at the hospital and Hope seemed much happier today.  I think she's finally feeling a bit better.

Today was not the best day in regards to our talks with the doctor.  We are thankful that our cardiologist has truly grasped the severity of the clot at the end of Hope's PICC line.  Many times we have been told the line will be pulled before we remind the doctor of the clot.  Today it was brought up once again.  The doctor has contacted neuro surgery and they are trying to figure out how this line can one day be safely pulled.  In the average person, the clot would go through the lungs.  Hope's anatomy is far from average and the clot will go directly to her heart, and potentially follow to her brain.  This is so dangerous and could be extremely serious.  Please pray that the doctors are able to come up with the best possible solution for this clot.

We were also told today that as soon as Hope goes 24 hours without diarrhea, they will rebook the cath.  We could still potentially be there by the 27th, but we need this poop to get a little less watery first!  It leaves our lives very up in the air.  We need the cath done in order to have Hope's next Varices treatment as well.  The Calgary team has made it clear that they will not operate on Hope in Calgary until AFTER she has the cath done in Edmonton.  They need her heart more stable in order to consider putting her under anesthetic here.  I do believe that's a fair decision when you weigh the risks.

Christmas if very stressful for us and I'm truly hoping it is over with quickly.  The expectations that come along with holidays are stressful in the best of times.  Some days I feel as though no one understands where we're at in life.  I only have decorations up because someone else put them up.  I would take them down if it wasn't for Sadie, but I know she loves to see her tree.  We only have Christmas baking, because others dropped it off.  We don't care if we make it to a church service, eat a turkey dinner or have pancakes on Christmas morning.  We want Hope to survive, to get strong enough to come home and we want to be together, all 4 of us.  That's all that matters to us this year and everything else feels so small in comparison.  We may not meet others expectations this year, but I'm truly not sorry.  My obligation is to my children, God has tasked me with being their mother and I'm going to make that my priority.

When life is more normal on a regular basis, I pray I am reminded of this feeling.  When I stress about how perfect dinner will taste for company.  When I worry about what my children are wearing in public or if someone likes me.  I want to remember what it feels like right now.  To know that God is truly the most important thing.  The one that I seek to honour with my life.  I want my focus to be loving others, not impressing them or meeting expectations, many of which we put on ourselves falsely.  I hope that next Christmas I'm able to celebrate the gift of Jesus coming to the earth and not get caught up in getting my baking, shopping, decorating and entertaining in.  Sometimes it takes tragedy to pull us out of all the fuss and make us truly evaluate what's important.

I can honestly say that I am thankful for Hope.  Her life is difficult and that impacts our lives in every way.  Not all of those ways are negatively and perhaps I would never become who God intended for me to be without walking this difficult road.  That's the thing about God refining us, the fire is hot and it burns, but the finished product is always more beautiful.  I pray through the holidays that Hope reminds us all of what is truly important.

Friday, 21 December 2012

The Common Cold

I am exhausted.  I've had sleep, I take breaks and our support network is wonderful.  My emotions have taken a huge hit this week and it has completely wiped me out.  We have been told to get ready because Hope is leaving in the morning.  Then we were told she couldn't go until the 27th, then the 24th and now we have no date.

Today a swab that was taken from Hope's nose 4 days ago, came back positive.  Hope has the common cold virus.  They will not take Hope into the cath lab with a cold, so they have cancelled her heart cath. Until we get a negative result, or Hope's diarrhea stops, we won't get a new date for the heart cath.  We will be here in Calgary at least until the 26th, but likely longer.  This is so frustrating when we know that Hope needs to have this test.

Hope has spent the last two days very uncomfortable.  She rarely sleeps during the day and spends her awake times very fussy.  After 8 hours of straight fussy, I just have to get out of the hospital.  I plan to take a lot of breaks this weekend, it's the only way I'll be able to continue like this for another couple of months.  I used to be able to spend 24 hours straight at the hospital with Hope.  Now I begin to lose my mind after 8 hours.  I just keep wondering, "How long oh Lord??"

Although I am exhausted, I am also very blessed.  Numerous complete strangers have come to the hospital to sit with Hope while we leave to regroup and renew our strength.  There have been little reminders that we are not alone and that so many people are walking with us.  Thank you for continuing to pray.

Thursday, 20 December 2012

Surrounded by Angels

Another rough day for sweet Hope.  She was grumpy all morning after a terrible sleep last night.  She had a grand total of a ten minute nap in a 12 hour period!  She is completely exhausted but too uncomfortable to sleep.  We did a lot of bouncing today, she would not let me sit down or stop moving.  Thankfully we had lots of visitors today and I kept my sanity!

Hope spiked a fever this morning and started a bit of a fight between her doctor and I.  I had agreed to let them lock her PICC with antibiotics, as long as they were restarted if she spiked a fever.  They tried to fight me on it this morning when I insisted they were restarted.  Eventually they caved and they started again.  The Infectious Disease doctor came by and changed Hope's antibiotics as it doesn't make sense that she's running fevers while on them.  She is now on one of the strongest antibiotics and although it's not good for her, it might kill the infection finally.  They worry that the infection is in the blood clot and will not die until we pull the line.

The petite princess is now only receiving 2mls an hour of feed and is taking everything else from liquid nutrition through her blood stream.  Until they find out why she has diarrhea and fevers, they've decided to stop trying to feed her.  It wasn't working anyway and they need to solve the problem before we can find a feeding solution.  This is a huge step backwards and fairly discouraging in regards to going home one day.  Hope is losing weight and they hope that putting her on liquid nutrients will give her some weight gain.  The feeds are being pooped and barfed out too quickly to help her grow.

Tomorrow we should receive word about our transfer to Edmonton.  Today we were told that Hope would likely be airlifted on Saturday instead of Sunday.  I guess we'll find out what new random facts we'll be told tomorrow.  Until we're actually driving to Edmonton, I'm not going to believe that we're going.  I packed the first time and am attempting to keep those things together to save myself all the work next time.  Although now I'll need to pack for Sadie and Shawn as well!  At least we can go up as a family now.

Tonight Hope was blessed by a private concert from some of the singers in the New West Symphony and Chorus.  She stared at them as they sang and didn't make a sound.  I'm pretty sure she loved it.  When I played a video of it happening for Shawn he said, "that probably sounds like the singing she hears in heaven each time she almost dies."  It's true, I'm sure Hope has heard angels singing around her many times, we're just hoping she doesn't follow them home anytime soon.

Please continue to pray for us as we prepare for another transition in our lives.  I was looking back at pictures of Hope today and you can see the life being sucked out of her.  She rarely smiles now and hardly plays with things.  I want to bring her home so she can progress once again and stop moving backwards.  We need answers and we need them quickly, before it's too late.

Friends have organized another 24/7 prayer schedule for Hope over the holidays.  I've posted the link for anyone that wants to be a part of it.
https://docs.google.com/spreadsheet/ccc?key=0Ap7fUXmVakGpdFZMemlFNjNWNDJwcGQ4RFpOdm9USWc

Wednesday, 19 December 2012

Edmonton the Impossible

Today was not a good day for many reasons.  Hope's transfer was cancelled as Edmonton is swamped with kids right now.  Calgary is also full to the brim and has kids in the ER just waiting for rooms to clear so they can come up to the ward.  I guess this Christmas will be different for a lot of families.

In the afternoon the cardiologist came to tell me that Hope's cath has been booked for December 27th and she'll be transferred on the 26th.  I was extremely frustrated and angry to be honest.  I'm so sick of the constant ups and downs with this journey.  I spent so many hours prepping my family for a departure to Edmonton today!  Now I have to do it all over again next week.  Christmas was the perfect time for this to happen as it allowed Shawn to be there for the procedure with me.  He could bring Sadie up and we'd have a whole week as a family.  Shawn is returning to work on the 27th and once again, I would not have him with me.

When I'm really angry I find it hard to express myself without crying.  Today the tears fell and the cardiologist heard my frustration.  She then spoke to our primary cardiologist and he called the doctors in Edmonton on our behalf.  They have agreed to try and take Hope as an emergency case on December 24th and transfer her on December 23rd.  This is ironically good timing for us.  We have to be in the hospital either way, and this way we can be together as a family and Sadie can have Christmas at the Ronald McDonald House.  We are supposed to find out on Friday if they can take Hope on the 24th, as the transfer would need to be scheduled at that time.  Please join us in praying that they will not delay this any longer.  The doctors agree that this procedure, although risky, could greatly improve Hope's current condition and get us closer to figuring out what's going on with her little body.

I'm tired of fighting, I have my guard up at all times in the hospital because there are constantly things happening that are not in Hope's best interest.  Today the doctors agreed not to put Hope back on the formula that she has not tolerated the last 3 times it was attempted.  Then, in the afternoon the nurse brought in Hope's feed, that same bad formula they'd agreed not to give her.  Apparently the pediatrician had misunderstood the cardiologist when they'd spoken about what kind of feed to put Hope on.

Hope is now back on TPN and only taking in 5mls of feed.  We are starting at the beginning and have a long way to go before they'll ever consider sending her home.  I used to think that being home by New Years wasn't soon enough.  Now I just hope to make it home with Hope before her first birthday in April.

Thank you for continuing to pray for us as we journey with Hope.  We're getting very tired and know that our strength comes from the Lord and from so many lifting us up in prayer.

Here are some recent photos taken by redlinephoto.ca



Tuesday, 18 December 2012

Edmonton...Take 4.

It's true, we are making our 4th trip to Edmonton with little Miss Hope.  The doctors have decided that the heart cath is in Hope's best interest and are going to move forward with it.  They gave us the option of waiting until December 26th, but we'd like to get this going as soon as possible.  I'd hate to find out that Hope needed it and we delayed so we could pretend that Christmas was "normal" this year.  Later the doctor confessed that they had offered the 26th in case things didn't go well.  They didn't want us to associate losing Hope with Christmas.  I told her that if we lost Hope on December 21st or December 31st, we would spend every Christmas holiday thinking about this one regardless.  We are praying that this is not the case and are moving forward with this dangerous procedure.

Today, the GI doctors decided they would stop Hope's antibiotics in order to see if it would stop her diarrhea.  I firmly stated that would NOT be happening.  Hope still has a line in her leg that is infected.  The antibiotics are the only thing keeping her from going septic and I am not risking a blood infection just to stop diarrhea.  They can give her fluids through the line to keep her hydrated.  The antibiotics will run until the line is out, that is not up for discussion.  The doctor then said they planned to switch Hope's formula.  I was so frustrated, they want to switch her to a formula that we have already tried, and failed, using twice.  I know they can't memorize her chart, but let's try something new for once!  GI is going to meet again and see if they can come up with some new ideas, obviously these ones are not any good.

Hope continues to throw up her feeds, has terrible diarrhea and is generally uncomfortable.  I'm not happy about returning to Edmonton, although I feel it is best for Hope.  I am ready, more than ever, for some answers and solutions for Hope's fragile body.  I want to bring her home.

Tomorrow, I will be driving up to Edmonton on my own after Hope is airlifted.  Shawn and Sadie will come up on Friday to join me and will be able to stay for a week if needed.  That is one good thing about Christmas, Shawn is off work.

We called RMH today and have a room starting on Saturday if we are still there.  We decided this would be the best place to spend Christmas if we need to be up in Edmonton.  Sadie will have an absolute blast and will be with other kids that are out of their comfort zones as well.  There is a chance we'll be back in Calgary, but are planning ahead just in case.

Going to Edmonton on my own means I'll be living in the hospital 24/7 with Hope.  I'm not sure how sane I will be by the end, especially with a roommate again.  Please pray for strength and endurance for me as I'm going to need it.  When Shawn and Sadie arrive, we'll move into the RMH and I'll have more of a home base to come and go from.

I am doing everything to keep from having a breakdown tonight.  I have too much to do and not enough time to cry.  I need everything ready for Christmas for Shawn to bring up to Edmonton if needed, packing to do and things to organize.  I don't know how to ask you to pray.  I just want Hope home and this all to be over, pray that happens.

Monday, 17 December 2012

Short and Sweet

Tonight I do not feel like writing.  I guess it's a short update with just the facts kind of night.  It wasn't a terrible day, I'm just feeling lazy.

Hope has a dangerously low magnesium level.  This proves that she is not absorbing her feeds and TPN (liquid nutrients) will be running until they can find a way to make her absorb food.  The infectious disease team said that if they can't find a source for the fevers, they may do a spinal tap.  The cardiologists no longer agree about whether or not to do the cath and we may not find out until Wednesday what they've decided.  Hope is throwing up, she can't absorb the food so it comes back up. Hope has a terrible diaper rash from constant diarrhea that they can't explain or stop.  Hope will now have blood work much too often to check her magnesium levels after getting infusions of it.

Not a great day for Hope but she's staying strong and we had some nice times together today.  It's a Monday and a care shift day as well.  We got a new cardiologist, GI specialist and Pediatrician on rotation this week.  Should be interesting, maybe new minds will have some new ideas to make this little lady more comfortable.

Please continue to pray.  The doctors need wisdom and Hope still needs a miracle.

Sunday, 16 December 2012

Waiting for our Miracle

This morning at 3am I thought I would lose my mind.  Hope finally fell asleep after a dose of sedatives, but just 1.5 hours later was woken up by one of her pumps beeping.  At 6:00 am I asked the doctor to come and see me.  The resident that arrived had no useful ideas, other than stopping her feeds - something we are trying very hard not to do.  I began crying in my overly exhausted and emotional state and shared my frustration with how things work.  He agreed to give her a second sedative to give her at least a little bit of sleep.  By 7:00 Hope and I fell asleep and were able to sleep until 11:00 with only a few interruptions.

The charge nurse informed me that Hope was under the "teaching" teams care.  I immediately requested to have her taken off the teaching team and put with the experts.  I'm all for residents learning, but I just want to go home and I've been pretty patient with them so far.  I want experience now.

The doctors had been patiently waiting for me to wake up, and started flooding in when I finally crawled out of bed.  The cardiologist confirmed that Hope will be presented on Tuesday afternoon at the cardiology conference and will likely be sent back to Edmonton as soon as they can schedule her for a heart cath.  Shawn and I both feel this is best for Hope.  I'm dreading that long wait while she's having the procedure without Shawn there.  I've gotten stronger though, I'm sure I'll survive.

Today the GI team spoke to me about Hope potentially having a problem absorbing protein.  An issue that is sometimes seen in kids after the third surgery but almost never after the second.  Hope likes to be the ONE baby that defies the odds and they've decided to look into this further.  Later in the day they discovered that her potassium was dangerously low and they ran potassium into her PICC line for many hours.  Her blood work is now back to normal.

Hope has been having crazy amounts of diarrhea for days and is now off feeds and on pedialite to keep her hydrated.  She is also back on isolation as they are wondering if she has an infection in her tummy of some kind.  I know what you're thinking, "seriously? How can this child have so many issues?"  We feel the same way.

We're clearly in for another long haul before we get close to discharge.  We are settling back into the idea of a long hospital stay and are working to keep our spirits up.  I'm continuing to work at finding volunteers to sit with Hope through the dinner hour and even over night.  We've found that if we can have dinner together as a family, we feel more connected and less stressed out.  It's also a blessing to be there for Sadie and to put her to bed as often as I can.  Someone else staying at the hospital through the night allows me to have a few minutes with Sadie in the mornings and gives me the rest I desperately need.  I can't imagine only sleeping like I did last night and trying to function each day.  We are so thankful to all the crazy people that have already given up a night of sleep to sit with Hope.  You are a great blessing to our family and we are sincerely thankful for you.

Saturday, 15 December 2012

Musical Tears

I'm going to guess that some of you were praying that I would have feeling in my heart again.  Today we had the pleasure of going to the New West Symphony and Chorus.  It's never easy to get out as we have to find two babysitters, one for Hope and another for Sadie.  As we enjoyed the music I couldn't help but cry.  They played and sang numerous Christmas songs and I was incredibly moved by the song, 'Mary did you Know?'  I thought about Hope as they sang, and I thought about my role as her mother.  The song talks about Jesus and if Mary knew that her son would have such an impact and be the saviour of the world.  I'm not saying that Hope is like baby Jesus, she's clearly not God.  What hit me was the fact that I had no idea as I carried Hope, knowing her heart was broken, that she would mend the hearts of so many others.  I often hear from people about how Hope's story has touched their lives and drawn them to their knees.  As her mother, I never imagined the impact that our pain would have on the world.  Beyond that, I never imagined the changes that would happen in my own heart as a result of Hope's life.  Can you ever truly be the same after walking this road?

I can clearly see the evidence that Hope's painful journey has a purpose.  I know that God did not desire for Hope to go through this, although he had the ability to stop it and chose not to.  Many people wonder why God allows bad things to happen to good people.  We're not good people though, we're all sinners.  We all deserve bad things to happen to us and have simply been spared.  As I walk through this journey with my family, I believe I have a basic understanding of why God chose not to stop this.  God desires to have a relationship with his people, longs for us to speak to him and allow him to be a part of our daily lives.  For many of you, Hope's pain has drawn you back to speaking to God, to allowing him to be a part of your lives again.

After hearing about the horror in Connecticut yesterday I was reminded once again that this world is a sick and evil place that desperately needs God.  I don't know how someone could watch what happened and not see a need for God in this world.  God is relational and wants you to invite him to carry you through this evil world.  He doesn't promise that life will become easy and full of only good things.  What he promises, is to never leave you.  That's what I need right now, I need the Lord and I know that he will never leave me.

Life with Hope has been very discouraging the past few days.  Today the cardiologist told us that if Hope doesn't give us a clear picture of why her lungs continue to be wet, we'll have to dig deeper.  On Monday they will make the final decision, but it sounds like we'll be sent back to Edmonton for a heart cath to take a closer look at Hope's heart.  If there was nothing surgical to be done, we would be sent back to Calgary after Hope was stable.  If this happens, Shawn and I are talking about not going as a family.  We're thinking that Hope and I will go up alone until we know how long the stay will be.  That way, if it's just a brief stay, we won't have to uproot Sadie once again.

We know we'll be spending Christmas at the Children's Hospital, but we want to be with family and Hope is our family too.  I have spent other Christmas' out of my usual routine.  In 2001 I spent Christmas in Papua New Guinea without any family.  In 2005 I spent Christmas with a group of young people in Maui, all trying to add touches from our traditions at home.  This year may not include fancy table clothes and fine china, but it will include the people I love and that's what I truly desire.


Friday, 14 December 2012

Numb

I am completely numb today.  Hope had a horrible night yesterday and today was not full of great news.  Her lungs are very wet once again and the doctors can not figure out why this continues to happen.  They're pretty sure that although the motility medication is pushing Hope's feeds through, she's not absorbing them properly.  We have a GI issue that remains undiagnosed and no one has a clue how to treat it.  As well we have wet lungs and a low grade fever that won't go away.  As a result, we are no longer just waiting for Hope to eat.

After 3 throw up sessions last night, Hope's feeds were cut back and the TPN was re-started.  I have no idea how she'll ever be able to come off it.  Also, the wet lungs have put Hope back on oxygen!  Thankfully the oxygen is no longer blended, one positive step.

I felt almost no emotion as the doctors were talking to me today.  I just expect these things to happen now and never truly believe we'll get to go home.  It's a way to protect myself, but is still not healthy.  On the other hand, God has reminded us once again that our community is carrying us through.  I am speechless tonight as I think about how wonderful people have been to our family.  I am challenged to be a better person when I see how others step up to walk beside us through this journey.  We finish today discouraged, yet blessed.

Thursday, 13 December 2012

Emesis=Fancy Barf

I never know what to call things when I'm speaking to the doctors.  They have fancy names for vomit, poop and everything else Hope does.  Last night Hope threw up 5 times and had another 2 episodes today.  They are planning to have her completely off TPN at midnight tonight, but this is going to be hard on Hope.  She is not liking the volume in her tummy, even though she really needs it to grow.  It's going to be tough to get her feeding fully into her stomach.  Please join us in praying that this transition will go much faster than we're expecting.  It is the only thing holding us in the hospital at this point.

No other changes to report.  No news on the clot, the line will likely be pulled late tomorrow night or on the weekend.  We'll try to let everyone know once we have a time and date for that.  We are begging God to spare her from a brain injury.  I watched a father lift his handicapped child into their van in the parking lot today.  I was struck by the fact that Hope could receive a severe brain injury from this clot if it ends up in her brain.  I began thinking about it when a song popped into my head and I just had to sing it.  Thankfully the parkade is loud and no one else had to listen to my singing, just the Lord.  I sang,

"Our God is greater, our God is stronger
God You are higher than any other
Our God is Healer, awesome and power
Our God, Our God..." 

Although I still worry about Hope, I got into the car feeling peace.  I drove back to our house to have dinner with Shawn and Sadie.  I believe that God is in control, He has a plan for Hope's life and I can only pray that His plan is to save her.

Wednesday, 12 December 2012

TPN Tomorrow??

Hope remains oxygen free!  It's been over 24 hours now and she is doing so well.  After some issues with vomiting yesterday, Hope's NG feeds have been dropped to 11mls an hour.  Her NJ feeds are up to 6mls an hour.  That gives us a total of 17mls an hour, our final goal is 24mls.  Hope will reach this goal at 10pm tomorrow, if all goes well.  That means, we could be finished with TPN (liquid nutrients) by tomorrow night!  The doctors plan to leave the PICC in for another 24 hours after the TPN finishes and hope to pull the line on Friday.  I can hardly believe this might happen, but am hoping it does.

Today I asked the cardiologist what we needed to accomplish to get out of the hospital.  Once Hope is receiving 11mls by NG and 13mls by NJ, she'll be at full feeds.  Once this happens, we'll slowly begin to move the NJ feeds into NG feeds.  Once Hope is receiving all 24mls by NG feeds, she can go home!  This could take some time as we have really struggled with feeding issues.  Please pray that Hope will surprise us and do amazingly with her feeds.  We are so excited to one day have her home and are anxious for this to happen.

All of Hope's blood tests came back negative!  They have no explanation for the fevers, but we are off isolation.  I'm praying the fevers stop and we did not somehow miss something with Miss Hope.  Thank you all for continuing to pray for a miracle, she continues to amaze the world each day with her steps forward.  Please be praying for the clot on the end of the PICC line, this could be a major issue and we are praying that God would take away the risk.

Tuesday, 11 December 2012

Goodbye Oxygen!

Today I ran into Hope's hospital room in the midst of rounds.  Maria had spent the night, but I didn't want to miss rounds in the morning.  I confessed my oxygen tampering to the doctor and he laughed.  He had wondered how she'd come down and couldn't find anything in her chart.  He told me that I knew Hope well and could continue, as long as I kept them informed.  Just 7 hours later, I had Hope completely off oxygen and removed her uncomfortable nasal prongs.  Praise Jesus for this wonderful step in the right direction.  Now that Hope is off oxygen, especially blended oxygen, we should be able to take Hope out in the hallway for a walk sometime soon!

This afternoon the GI team came to meet with me after a meeting with the paediatric team.  I'm not sure why we hadn't gone back to this earlier as we have tried this once before with Hope.  They have decided to feed Hope through her NG (tube to her stomach) and an NJ (tube that goes past the stomach).  The NJ was inserted this afternoon and they began feeding her through it this evening.  Hope is receiving 15mls an hour through the NG and will have increasingly more feed put into the NJ as well.  This will help us achieve full feeds at a faster pace than Hope's stomach alone would allow.  Once we get off the liquid nutrients, we can get rid of the PICC line!

We still have a major issue here, the clot.  They have decided that there is no easy way around this and that no matter what we do, we are taking a risk.  Once the liquid nutrients (TPN) is no longer needed, they will wait 48 hours to be sure we're okay and then pull Hope's PICC line.  We are asking the world to pray that the clot at the end of the line will end up in the lungs or disappear before the line is pulled.  The lungs work as a filter and can keep the clot from going anywhere dangerous.  If it does not go through the lungs, it could end up in the brain and cause serious problems.  We need a miracle and we know that God is able and are asking Him to spare Hope once again.

I am trying not to get ahead of myself, but find it hard to control myself some times.  Now that Hope is off oxygen and we are closer to removing the PICC line...maybe there could be a chance of a day pass for a few hours on Christmas day??  I'll wait until she's more stable to bring it up in rounds, but I'm certainly thinking about it and hoping for this miracle.  Hope will need to be tolerating her feeds more for this to be possible...at this point that does not look too good, but I refuse to give up on her.

I used to love the movie 'Miracle on 34th St' and this year I am asking you all to join me in praying for a miracle in Hope's body.  Thank you for believing in a little girl with only half a heart.  She has the odds stacked against her, but God does not care about the odds and is capable of the impossible.

Monday, 10 December 2012

Cafeteria Turkey!

I'm not sure why, maybe it's God speaking, but some days I have fantastic ideas that come out of no where.  Today I was reflecting on the fact that Hope has been on oxygen forever!  Her oxygen levels are remaining consistent and she appears settled where she's at.  No one seems to monitor her oxygen levels, unless she sets off the alarms.  It seems as though they will leave her on blended oxygen forever.  I decided today to try to take her off the oxygen.  I brought her from 50% to 40% over a 5 hour period with no change in her oxygen levels.  I then told the nurse what I was doing and she felt that as long as Hope could tolerate it, it was clearly fine.  Tomorrow I will attempt to go from 40% to 30%.  Hope's body is good at telling us what she doesn't like and if it needs the oxygen, her levels will drop and we can put her back up.  I wondered today if the oxygen is making her lungs lazy, causing less blood flow to her heart (because of her anatomy) and was a source of our problems, not our solution.  We'll see if I'm right and what the doctors say when I bring it up in rounds tomorrow morning.

Hope's nurse today is one of my favourites.  She is very loving to Hope and constantly fights people to leave her alone to let her rest, not that she sleeps anyway.  She talks to me about a lot of spiritual things and comments on the 'spiritual energy' in Hope's room.  It really sunk in that Hope has an impact in the hospital with the staff.  She was commenting on the fact that our "community" is keeping us sane and that many parents are loose canons after being in the hospital as long as we have.  She may not realize it, but she is witnessing the power of God at work.  No mother is strong enough to endure what I have and be sane, I should be on meds and living in a psych ward.  This is clearly God working in me and through the many people that are carrying our load with us.

Hope is running a fever once again and the doctors fear that she is brewing another infection.  Blood was taken off of her line, as well as her arm today to test for infection.  We should find out in the next 48 hours what the results are.  She is now back on antibiotics and we feel frustrated with another step backwards.  We are up to 13 mls of feed an hour and will be going to 14 mls at 2am tomorrow morning. She doesn't appear to enjoy eating and although I wish we could stop, I know that eventually she will need to endure the pain of the adjustment.  Her stomach has not had a full feed in a long time and will take time to learn how to enjoy food once again.

A month ago the very thought of Christmas in the hospital was too much to bear.  Today I am sad to think that it won't be a relaxing Christmas full of family time for Sadie at home.  Overall I feel like I can handle the holidays in the hospital and that in a years time, it won't matter anyway.  I have so much to be thankful for in life and I refuse to allow the building we spend Christmas in to ruin our joy.  I'm sure the cafeteria serves turkey on the 25th!!

Life is certainly not perfect and I would change so many things if I had a choice in the matter.  But, I am not capable of seeing the bigger picture like God is.  Perhaps the things I would change would take away so many of the blessings that come with the heartache.  I trust that His ways are greater than my own and will continue to trust in His good and perfect will.

Sunday, 9 December 2012

Two kids, Two sickies.

Things continue to be interesting in our house.  This afternoon I sat in Hope's room at the hospital with Hope, while Shawn sat in the ER of the same hospital with Sadie.  Sadie has an ear infection on top of her croup.  Thankfully the wait was not too long for Sadie and Shawn.  Tonight we put her down before dinner and she had a 2 hour sleep before waking up in extreme pain.  We are alternating between Advil and Tylenol to keep her settled and waiting for the antibiotic to kick in.  A sick toddler involves of lot of crying and tantrums.  This is incredibly draining on Shawn and me and we don't find we have the patience right now to handle it.  Please pray that she would get better quickly and that we would have the patience to care for her until that happens.

We are feeling very frustrated with Hope's feeding progress.  This seems to be one of the major things that keeps us in hospital.  After switching Hope to bolus feeds (large volume in less time) she had to be switched back to continuous feeds because of intolerance.  We have been stuck at 10mls an hour forever!  Today I asked if they could try adding more volume to see how Hope would tolerate it.  She is now at 11mls and has not yet thrown up.  Please pray that she continues to tolerate her feeds so we can get her off the liquid nutrients, pull out the PICC line and bring her home.  We are waiting, but are losing our patience as each day passes.  

Today they were able to take Hope down a little bit on her oxygen.  She still has a long way to go, but any progress is worth celebrating at this point.   If Hope was off oxygen, we could move her around the room more, take her out for walks around the hospital and would be one step closer to home.  Please pray that she would be breathing without assistance soon.

Along with the ups and downs in this journey, comes anticipation and disappointment.  I usually have some goal in mind of when Hope will be to her next stage.  Whether that is a surgery, a trip home or a step forward in her medical care.  Right now I feel completely numb and void of any anticipation.  I struggle to see how we can get Hope home in the next few months as we seem to make such minimal progress.  I think I am protecting myself from disappointment and assuming she'll be in the hospital for months.  Secretly, I hope we can be home before the New Year, but will simply not allow myself to believe that's even possible.  I think the optimistic version of myself is happier and I long to feel like Hope will be home soon.  Please pray that she starts making more positive progress and that Shawn and I will be encouraged and see some glimpse of an opportunity to have her at home with us again.  

I know that God is using Hope at the hospital.  The nurses adore her and we have built friendships with many of our nurses.  We have been truly blessed by the care we receive from the staff and feel confident in their ability to treat Hope.  The staff work tirelessly to treat Hope, but also to make our family more comfortable.  I hate to wish our time with them away, but I am dying to bring Hope home. I just hope that whatever impact God has planned for Hope to make in the hospital, that it happens in the next few weeks and isn't a long project!  All I want for Christmas is Hope in our home with Sadie.



Saturday, 8 December 2012

A Day of Rest

Hope is now 8 months old and today was my first true day of rest.  The only time I've ever spent an entire 24 hours away from Hope, is when I've gotten too sick to be there.  I was able to spend an entire day with Sadie, a day full of relaxing activities and good laughs with a friend.  Today was truly a gift and has encouraged me and given me the strength to continue on this journey.  Shawn had the morning off but spent the evening with Hope.  The weekends are a gift to him as he hardly sees Hope during the week.

As the day comes to an end, I am struck once again by the importance of community.  This weekend has been full of blessings from friends, family and complete strangers.  I drove to the hospital this evening and thought about how we would survive without the support we have.  I was overwhelmed with gratitude for everything our community has done and continues to do.  Thank you.

Not much changed with Hope today.  She is less stuffy and is not acting as though she has a cold, hopefully that has already passed!  She is tolerating her feeds a bit better and appears to be more settled.    Hopefully tomorrow will be another uneventful day with our sweet girls.

Coughing Kids

There is a positive side to almost everything in life.  Sadie has Croup, something we are less likely to contract as adults.  Shawn and I feel relieved to know that we won't catch it, but need to work diligently to be sure Hope does not catch it.  Sadie is not allowed in the Children's Hospital at all until it passes.  I've been working hard to sleep at home while Sadie is sick and have a friend sleep with Hope.  Last night, Sadie was up all through the night and we hardly slept.

Hope has been put on isolation.  Yesterday her nose was full of snot and she struggled to breath.  The doctors sent samples off to lab to find out if she is carrying a virus of some kind as well.  She seems better today and we're hoping she did not catch a cold...or Croup!  Please pray protection upon her little fragile body as she fights through the germs she comes in contact with each day.

I've been out of the hospital a lot more with Sadie being sick.  It makes me feel more out of the loop with Hope's care and is frustrating for the doctors that are looking to speak with us.  Regardless, we feel this is what Sadie needs right now and try not to feel guilty.  Hope is never alone and our friends do a wonderful job of loving her.  Life appears to only get more complicated for our family right now!

Hope continues to struggle with her feeds and is vomiting multiple times each day.  We're pushing through in the hopes that her little body will adjust to the feeds.  Please pray for Hope's feeding issues.  We need her to eat so we can turn off the liquid nutrients and get her home!


Thursday, 6 December 2012

Blood!!!

Tonight I am updating from the comfort of home.  After two nights of almost no sleep and my sanity quickly draining, our friend Maria offered to spend the night with Hope.  I'm assuming she really likes to pull all nighters!  Please pray that Hope would sleep for her benefit and Maria's.  Sadie is quite sick and put herself to bed before dinner.  I wanted to be home with her in the morning as she's constantly crying and wants her mama.

This morning Hope's PICC line was still not working and after a failed attempt to draw blood from her artery, they decided to try a clot buster.  This has been used in Hope's line before but was considered too dangerous if we had other options.  The clot buster (TPA) is put into her line and left for 2-4 hours, after that time it is removed.  The fear with her line not drawing back, is that the TPA would be stuck in the line and eventually flushed into her body.  The doctors decided that the benefits out weighed the risks and went for it. We have to give glory to God for the miracle that occurred...BLOOD!  The doctors were finally able to send all of the tests away that they needed and we are now treating her in a much more informed state.

Hope continues to struggle with her breathing and is receiving a lot of assistance from oxygen.  Her lungs continue to look wet on X-ray as well.  At this point they aren't sure if the new set-up of the heart is causing the fluid to collect, or if we're missing something else.  Everyone is scratching their heads as they try to "fix" Hope.  The staff are working hard to find answers, but continue to come up empty.  Please pray for wisdom and insight as they look into different options or potential treatments to move past these issues.

After another restless night, they wonder if the motility agent that is helping Hope digest food, is also causing her some pain.  We've decided to keep her on it for now and will pray this is not the case at it is allowing us to feed her.

Having two little girls that need you is incredibly difficult.  One of my mom's dear friends came to the hospital this afternoon to sit with Hope while I took Sadie to the doctor.  She was coughing so hard in the waiting room, that she threw up on my purse, and then on me!  I guess when I have some free time I'll go purse shopping!  The entire time we waited she continued to say, "I want to go to the doctor, I need medicine."  Her lungs are clear, ears are fine and throat appears fine as well.  She has caught a bad virus and will just have to wait it out.  There is a chance that she is developing croup, which she's had before.  Please pray against this, it is so hard to be away from her when she's not feeling well.  I'm torn between being with my sick Sadie, and advocating for Hope at the hospital.  Some days I wish I could clone myself.

I'm hoping I will wake up refreshed tomorrow.  I realize that my daughters will still both be sick, I'll likely still be tired and life will remain difficult.  Regardless, I would like to start tomorrow with a positive attitude and the faith that God is in control and is walking beside me through each step.  I need to be reminded of that right now.  Thank you for caring, we know that Christmas is busy for families and we appreciate that you have not forgotten us and continue to pray.

Wednesday, 5 December 2012

Learning the Liver

When this journey began, I knew very little about the heart.  I knew that it was beating in your chest and was found on the left side.  As we've walked through this all with Hope, I feel like I know more about the heart than I'll ever need to know!  Now with Hope's liver issues, I am being educated on a new organ.

This morning the liver specialist came to see me, he does exist!  He was worth the wait as he took time to explain the complex issues to me in a way that I would understand.  He asked what I did in the medical field when he was finished, I guess my lingo is getting good!

I left our meeting feeling very encouraged.  The shunt for Hope's portal vein is still a surgery that we'll hope to have.  There is a chance that she won't be able to have it, if the clot is too large and takes up part of the vein that is needed for the shunt to function.  What I did not previously know, is that there are other shunts that would be an option for Hope.  These shunts go into different veins and do not solve our low blood flow to the liver issues, but do help with the hypertension.  It would be enough to give us time.

The shunt surgeries happen at different hospitals across North America depending on the shunt you have.  We could be going to Montreal, Toronto or Chicago.  There is also a small chance that the surgeon would fly here and operate on Hope in Edmonton.  These are decisions that will not be made for some time as Hope won't be heading down this road for another year or so.  At this point they need to finish the treatment with her varices and have her more stable.

The specialist explained a lot more about the varices to me and I left feeling more in the loop.  She will likely not return to the OR until early January to have the procedure repeated.  It will take 4-6 treatments on average to destroy the varices.  Hope will enter the OR once a month until they feel they are under control and no longer a threat.  At that time, they'll begin taking her in every 6-12 months to keep a close eye on them as the treatment is not permanent.

While I had the specialist's attention, I talked with him about Hope's feeding issues.  Early this morning the nurse drew 48 mls (5 hours of feed) out of Hope's stomach, undigested.  We have been told over and over that we need to push through, but clearly this is not working.  I explained specifically to him what was happening and our history with feeding.  He recommended a medication, and Hope had some tests done to be sure her heart would handle it and it was started this afternoon.  Hope is already taking 20 ml feeds and tolerating them beautifully!  I'm trying not to get my hopes up, but this medication may be the solution to all of our feeding issues.  This could potentially speed up Hope's recovery and get us home faster.  I won't say by Christmas as I don't want to get too crazy, but I do think about whether or not that would be possible!

Last night I had 4 hours of sleep.  Hope was not settling all night and that meant I couldn't fall asleep.  It's after 11 pm here, I have Hope asleep in a vibrating chair that I am also rocking with my foot as I type.  She hasn't been asleep for long and I'm praying she'll stay asleep as I transfer her!  If you're still awake, please pray we all get some much needed sleep tonight.

Sadie is really sick, she has a terrible cold and appears to be getting worse each day.  She wants to cuddle with me and I'm terrified of Shawn or I getting sick.  Please pray that we would be protected from this cold as it would make taking care of both children almost impossible.  I have been able to have dinner with my family more often with the help of many loving people, thank you to each of you that has come to cuddle Hope for us!

This journey is full of ups and downs.  Today has carried a few small victories and for those, we celebrate!  I can only hope that we continue to climb up in Hope's recovery and stop taking the dives back down.

Tuesday, 4 December 2012

The PICC Drama

It was great to get out of the hospital yesterday and spend some time with Shawn and our friends.  I had some good laughs and managed to get rid of some junk from my house during a white elephant exchange!  I received two calls from the hospital while I was away, both with poor reports on Hope.  The first said that she was running a fever, but it came down after they unwrapped her and left it at that.  The second was early this morning as Hope's oxygen levels were going down and the fluid in her lungs had recollected.  Hope's room today has been a revolving door ever since.

No one is quite sure why Hope's lungs continue to collect fluids.  She is back on a high dose of diuretics and will likely be too dry in the near future.  I had begun fighting to have Hope's blood work limited to save her some of the pain.  As a result, the nurse came in this afternoon with a list of things they needed blood for.  All the different departments had to wait to be sure the blood was only drawn once.  This meant we needed over 2mls of blood.  The nurse connected to the PICC line, as per usual, but could draw nothing out of it.  Many different people and doctors were called, but nothing has worked.

They truly need this blood work to be sure Hope is not too dry, too fluid overloaded and does not have too many blood thinners on board.  They called some of the top nurses in to draw blood from anywhere on Hope's body.  Five pokes later, they admitted that Hope's veins were too difficult and this would not be possible.  As a result, we need a new line to draw blood off of.  Hope just came back from an ultrasound to check on the clot at the end of the PICC line.  They need to make sure the clot is gone in order to pull this line if they put in a new one.  This would also mean a trip to the OR and we're not even sure they'll be willing to take her.

We are asking people to pray.  Please pray that this line would miraculous begin giving blood once again.  Pray that the clot would be dissolved and would not pose a risk to Hope if the line needs to be pulled.  If we do need to go to the OR for a new line, please pray that they would be successful.  If you still have some time, pray for my own heart.  I am truly getting tired of seeing my little girl scream while they try to draw blood from her damaged veins.  We need a break from hospital life to allow her body time to heal.  God, would you please make my little Hope strong and let us bring her home?

Monday, 3 December 2012

Dry Diapers

There is one good thing about a bad night with Hope.  The following night I'm usually able to sleep through anything!  Last night the doctors and nurses were in many times.  Hope was X-rayed, had blood drawn and had a test done to show the level or urine in her bladder.  I never noticed any of it, I slept peacefully and woke up feeling so much better today.  If Hope sleeps through the night, I can sleep too.  Her cry is the only thing that wakes me up every time.

It has now been 10 hours since Hope last peed.  The doctors are obviously concerned and are trying to decide what to do next.  They have stopped feeding Hope this morning, for the second day in a row.  They are still considering tapping her right lung again.  Yesterday they had decided to hold off and give her one more day.  I have yet to hear if they'll be performing the procedure again today or not.  

Hope is now on a higher dose of pain medication and appears much more comfortable.  They have also added a pump with a button.  When Hope appears extremely uncomfortable, I can push the button and give her some extra pain medication.  I'm still not sure why Hope is still in pain, but I want her to be comfortable and will continue to fight for her comfort.  

Tonight a volunteer is going to sleep at the hospital while Shawn and I head to a Christmas party with friends.  I'm really looking forward to getting out and seeing some friends that we haven't been able to see since we've been back in Calgary.  We certainly could not get through this without the support of our friends and family.

Please continue to pray for wisdom for Hope's doctors.  Pray that the fluid on her lungs would soon be gone and also pray for wet diapers!

Saturday, 1 December 2012

The Impossible Balance

Today has not been a great day for Hope.  She is carrying a large amount of fluid on her right lung.  She is working very hard to breathe and has severe in-drawing on her chest with each breath.  Hope's colour is very off and her tummy is pretty swollen.  The overall consensus from the doctors is that she is simply too "wet" or fluid overloaded.  This is a constant battle for us and we appear to lose over and over again.

There are times when Hope's health appears to rapidly decline, and it is all solved by adding more fluid.  On other days, like today, she has a lot of problems that stem from being too wet and needing fluid removed.

This afternoon Hope was taken down to the PICU to have fluid removed from her right lung.  They used a small needle and inserted it between two of her ribs to take it from the lung.  They were able to draw 21 mls out through this process.  Unfortunately, they feel that a great deal of fluid was left behind. After the procedure, Hope was brought back up to the ward.  I was not happy with how Hope looked today and made sure to be heard by each doctor that came to see her.  The STEP team, a transitional team between PICU and the ward, has been involved throughout the day.  It helps to have them as they converse with the ICU doctors about the changes in Hope's care.

At 5 pm I told the nurse that Hope's IV was gone.  They put one in during her procedure in the OR on Thursday and were working hard to spare this 'extra' line.  I have seen Hope lose an IV more times than I can count.  As per usual, they did not believe me and insisted that it was fine.  I finally convinced them to move her pain med, that would burn her skin if the IV failed, out of the IV.  They began running pure saline through the IV and just came to apologize as the line is gone.  I'm thankful that her skin was not burned.  At least we had a second line for a few days, that was a blessing.

Tonight is my first night sleeping on the ward after a 10 day break.  I am thankful for the break, and fearful of how long it will be before this ends.  Tonight as Hope was having an X-ray, Shawn and I talked about life in the hall.  We're tired of living apart, tired of Hope's constant set backs and desperate to live in our home as a family again.  We have so much to praise God for in our lives, but still struggle with our reality.  We are blessed to have so many encouraging, praying and supporting us each day.

Friday, 30 November 2012

Tenant of the Ward :(

Hope was extubated around 8pm last night and did very well.  She started receiving her feeds again at midnight and her blood thinner was re-started at 7am.  After rounds, the doctors turned off Hope's pain medication.  I don't think this is going to last, she is still uncomfortable and was showing signs of needing the medication within hours.  I'm not sure what the plan is going forward as the doctors never gave me a straight answer about it today.

This evening around 9pm, Hope is being moved to the ward.  I'm happy that she is stable enough to leave PICU, but crushed that we have to go back to the ward.  I have no idea how long we'll be living on the ward, but I'm not looking forward to it.  

Our friend Erika is here to take care of Sadie, but is graciously spending the first night with Hope on the ward.  That is a gift like no other for us, especially on a weekend.  If you know her, make sure you tell her how amazing she is!




Thursday, 29 November 2012

Bigger is NOT Better

Life with Hope is always full of ups and downs, anything else would be too simple.  This morning we arrived at the hospital and Sadie wanted to hold her sister.  Hope was in a great mood and laid nicely on Sadie's lap for quite some time.  I love to see the two of them together and enjoying each others company, it's beautiful.  I was then able to steal Hope away for some cuddles of my own.

The surgeon came down early, at 9:30, and had me sign an ECMO consent.  As I mentioned yesterday, this is basically a life support machine that is used when the heart or lungs fail.  I have never been asked to do this before, but I reminded myself that they were being extra cautious.  I felt very comfortable with the anesthetist and knew that Hope was in the best hands possible.  We tried to count how many people were going to be in the OR with Hope and guessed that at least 10 people were surrounding her.

One hour after Hope was wheeled out of the ICU, 2 doctors from GI came to meet with me.  Things were worse than we'd thought.  Hope has 4 very large varices in her esophagus that were almost blocking off her esophagus completely.  Hope was then intubated and put under deeper sedation so that the surgeon would be able to inject these varices to shrink them.  If she was bigger, they would put bands around them to destroy them, but this is not possible when you're only 5kg.  As a result, they injected the varices today, and will need to do this again multiple times.  They plan to take her back into the OR in 2-3 weeks.

Hope came down 2 hours after she was taken and was still intubated.  At this time, 7 hours later, she remains intubated.  She did well through the surgery, the varices responded well to the treatment and her heart was stable.  They are struggling to extubate her as she is very sleepy and not breathing on her own.

We have been waiting to meet with the liver specialist.  After hearing about Hope's scope I inquired again about why he had not come to see us.  We found out that he is currently away and will be coming to see us on Monday or Tuesday next week.  We look forward to that meeting as he will be able to give us a lot of perspective on what is next for Hope.

Hope's portal vein clot is VERY severe, even the two branches that come off the portal vein are clotted.  This is not good news for Hope going forward and is going to be a difficult journey.  With the level of pressure the portal hypertension is causing, the varices will return.  There is a good chance Hope could have a bleed in a part of her body that they are not able to reach with the scope, this could be deadly.

We are hoping at this point that Hope will be able to have the portal shunt surgery.  We're not sure how big she needs to be and if this is even an option.  We hope that it is, as it may be our only option.  It was not a day full of great news and there are still many unknowns.  We still praise God that Hope came through the operation and appears to be doing well.

Please pray for strength for our family, we are not anywhere close to being finished with this journey.  We are tired, but still standing and we know that only God could give us that strength.  Thank you for continuing to pray for our sweet girl!

Wednesday, 28 November 2012

A complete 180

Today was almost a shock.  There was no doubt as we sat in that meeting that MANY people had been praying.  The geniuses came together and started to talk things out before we were invited to join them. They began sharing about the issues we were facing and addressed them one at a time.  Everything was organized and well thought out.  It was so informative and we were blessed to have the opportunity to sit down with so many people involved in Hope's care at once.

The clot on the end of Hope's PICC line is a problem.  We need to up her blood thinner in order to treat this.  They don't feel comfortable upping the blood thinner until they know where the bleed came from. GI did not realize that Hope had had an MRV in Edmonton and had been diagnosed with portal vein hypertension.  They knew she had a clot in the portal vein but did not know that hypertension was a for sure thing.  After hearing this, they were very firm on the fact that she needed this scope.  If she does have varices, they need to be treated or they will bleed again for sure.

Cardiology weighed in on the fact that they felt Hope's risk of needing ECMO (heart/lung machine or life support) was low.  They were open to her having the surgery and felt confident that she could have it in Calgary.  So....Anesthesia, after hearing these facts, felt more comfortable taking the risk and doing the procedure.  It helps to hear all the different specialists discuss the importance of the procedure.  They have asked that the ECMO machine be in the room during the procedure.  This will make it possible to get Hope connected quickly if necessary.  The surgeon is going to be on call if she needs him as well.

Hope is scheduled to enter the OR tomorrow morning at 10 am.  In some ways, it's nice to have it happen quickly as it gives us less time to worry.  Please pray for us tomorrow as we sit and endure that long wait once again.  Hope is much stronger this week and will be in a more stable position going in.  It's probably better that they didn't take her last week.

Hope's last blood cultures showed that the infection is isolated to the line.  That means that the only way to get rid of it, is to pull the line.  It also means that as long as she's on the antibiotics, it shouldn't spread.  This is good news for us in a few ways.  This will lower the time frame that she needs to be on the antibiotics.  It may also mean that she can come off the antibiotics as soon as they pull the line.  We're not ready to do that now, but  we should be able to pull the line in the next few weeks if the clot dissolves.

We then discussed Hope's probability of having her 3rd surgery.  I let them know that we were frustrated with the conflict of information.  In Edmonton, we were told that Hope could have the surgery, but she wouldn't be able to have it until she was older.  It would be difficult to get her to that point, but possible.  Since returning, everything was being spoken of as though the Fontan were impossible.  The cardiologist shared that Edmonton had not passed that information on.  They are going to write a note in Hope's file to be sure she is no longer looked upon as purely palliative.  The intensivist apologized for the negativity that had been surrounding Hope and promised to talk with the other ICU staff.

After a long discussion, the team agrees that there is some hope that Hope could survive.  The odds are stacked against her, but it's not impossible.  They are now saying that although Hope is not currently a candidate for the Fontan, it does not mean that she will never be a candidate.  That is all we needed to hear to hold onto the hope that we may watch our little girl grow up.

Hope is now completely off sedatives and only on a low dose of narcotics.  She will need to stay on those for a few days post operatively, but should be able to rely on only Tylenol soon.  Hope is now on 5 mls an hour of feed.  A huge jump for Hope, but she appears to be doing well with it.  Hope will remain in the PICU at this point, but will likely go to the ward on the weekend or early next week.  

We covet your prayers as we hand over our little girl once again tomorrow, it's never easy.  Please pray that they can find some conclusive answers for the bleed to avoid it happening again.  We are praising God for such a positive meeting that has changed the attitudes of many doctors involved in Hope's care.  If the doctors believe she can live, they'll work harder to make that happen.  Tonight we feel nervous about tomorrow, but encouraged about the future.  With God, all things are possible.

Tuesday, 27 November 2012

Genius Convention

This morning I dropped my mom off at the airport on my way to the hospital.  As I left the airport, I realized how truly numb I've become.  I find it more difficult to cry, unless things are truly terrible, and I cry less often even when I experience joy.  Although this protects me on many days, I also find it discouraging.  I don't ever want to become completely numb to emotion, it's not healthy.

Hope was sleeping when I walked into her room.  When she saw me, she began screaming for me to come and pick her up.  We managed to go the entire day without a sedative!  Hope was sleeping comfortably most of the day and didn't have a need for it.  It was a blessing to know that although she's on a lot of pain medication, she no longer needs the sedative as well.

Today we were finally able to give Hope some food!  She started feeding at 2 mls an hour and appears to be tolerating it well.  We're still not sure if she'll receive her scope or not, that should be discussed tomorrow.  The top of Hope's PICC line is not looking well, it's beginning to get pussy.  This is a terrible sign and could result in us losing the line.

A few days ago they mentioned that there was a small clot at the top of Hope's PICC line.  I never gave it much thought, I expected her to clot without her blood thinners.  Unfortunately, this is a major problem and could turn out very badly for Hope.  With the line infection starting up again, they may be forced to pull the line.  If they pull out the line, the clot will dislodge from the PICC and could go anywhere.  They worry is that the clot would head to Hope's brain and cause some serious problems or a stroke.  This obviously makes us nervous and adds more stress to the situation.  Hope's blood thinner dose was doubled today in an effort to dissolve the clot.  This could easily cause Hope's bleed to start up again.  There doesn't appear to be any easy options these days.

Tomorrow at 1 pm we will be attending a genius convention.  The lead intensivist, 2 cardiologists, anesthetist, GI specialist and the hematologist will all be sitting down with Shawn and I.  During this meeting, we will be discussing the next steps for Hope.  Please pray for us as we go into this meeting and make vital decisions for Hope's future.  Please pray that Hope's clot quickly dissolves and does not cause further problems as well.

Today we were told that Hope is stable and could easily be transferred to the ward tomorrow or the next day.  This means we will have a lot less time as a family and life becomes even more challenging.  I really struggle with balancing my life when Hope is on the ward.  We are working to get our insurance company to approve some private care at the hospital.  With 3-1 nursing care, we are not able to leave Hope alone and truly need the help.  We were denied it, in the past, because Hope is already considered to be under the care of nurse.  We're praying they understand our need to leave the hospital and see that Hope needs more attentive care.

Hope's antibiotics need to run for 6 weeks.  As a result, they don't see any way to have her out of the hospital by Christmas.  We are now hoping to be home before the end of January.  I can't even think about how long that is, it's too hard to face that reality.  We are thankful for your prayers, we truly need them.

Monday, 26 November 2012

Little Steps Forward

We know that each day we have with Hope is a miracle.  Today is no different and although it makes life complicated, we are happy to be with Hope.  When I arrived in the PICU this morning, Hope had just fallen asleep in a vibrating chair.  She woke up again at 2am and would not settle until 8am.  I'm wondering if a lot of it is her age.  If she wakes up in the middle of the night, she must wonder where her family is and has trouble falling back asleep.  She has slept most of the day in our arms and appears more settled than she was yesterday.

Hope is back on a very low dose of blood thinner, this is better than nothing.  We are hoping they'll soon be able to up her dose and reduce her risk of clotting.  Hope was started back on her liquid nutrients as well.  She is still not receiving any fats and is back in newborn diapers.  This is discouraging, we worked so hard to have her gain weight.  We'll have our work cut out for us once again.  The doctors in the ICU are talking with the GI specialists and are working to get Hope back on formula sometime today or tomorrow.

Hope's scope was cancelled this morning, they've decided it's too dangerous to push her.  They want to give her another day or two to stabilize before they put the scope down.  We feel okay with this plan as she is not currently bleeding.  The poor girl deserves a few days of rest after all she's been through.  

I spoke with the doctors this morning and they've agreed to drop her blood work down to once a day.  It's not able to be taken from the line because of the blood thinners running through it.  They were previously poking her at least 4 times a day.

My mom has been here in Alberta helping us with Sadie for the past few months.  She will be heading back to Michigan tomorrow morning.  This will be really sad for all of us, her included.  It's time for her to spend some time with my dad, he's been patiently waiting for her to come back.  A family friend is flying out the next morning to take over Sadie's care.  There are people in Calgary that are willing to take Sadie, which we deeply appreciate and often use.  Our greatest struggle day to day is feeling sorry for Sadie.  She's a very happy and well adjusted little girl, but she loves to be in her own house.  It's easier for us to relax when we know that Sadie is at home and has as much consistency as possible.  It takes a lot of the stress away and is a true blessing.  We looked into hiring a Nanny, but found it very expensive as a single income family.  We do receive some coverage for sibling care from the government because of Hope's condition, but it's simply too low to interest anyone.  

Thank you for continuing to follow along.  We are so touched by the number of people we meet that are praying for Hope.  It is a constant reminder that we are not alone in this journey with Hope.  

Sunday, 25 November 2012

Pipe Dreams

Today finished much better than it started for Hope.  She woke up at 2:30 am and was fussy from then until noon today.  No matter how many times she was given her pain meds or her sedatives, she was simply not happy.  At noon, she finally fell asleep and remained settled for the rest of today.  It is so painful to stand by and watch her cry when you're not able to do anything for her.  It was such a gift to snuggle her while she slept peacefully in my arms today.

They are pretty sure that Hope is REALLY hungry.  This makes sense, she has not received any food since Tuesday.  She was not even receiving her liquid nutrients, only sugar water.  They started her back on the liquid nutrients tonight and are hoping to start dripping in some food tomorrow.  I'll feel so much better when she starts receiving food again.

Hope's face is extremely swollen.  The last time I saw Hope that swollen, her SVC (main artery to her heart) was clotted off and she was near death.  It's difficult to see her like that and not panic.  They haven't found any major clots at this point, nor have they really looked for them.  Hope is finally getting a low dose of blood thinner into her body once again.  We ask you to pray that it's not too late and there are no life threatening clots already in existence.

Tomorrow they are planning to put a small scope down Hope's throat, while she's awake.  The scope will be too small to do anything, other than look at what's there.  Please pray that they don't see anything in her esophagus.  This would have them conclude that she has a bleeding ulcer, a much more positive diagnosis for her.

I feel like we're currently living on the edge.  We're waiting for more terrible news, or another terrible day with Hope.  I really need a day with Hope awake, smiling and content.  I miss the Hope that we know is inside her and long to have her back.   I dream of taking Hope home one day, it may be a pipe dream, but it gets me up each morning.  Please continue to pray for Hope and our family, this is a difficult road.

Saturday, 24 November 2012

Poo is Brown!!

I'm sure you don't often share publicly about your poo.  When your child has been passing large amounts of blood for days, it is worth celebrating a brown poo.  Praise the Lord, Hope's poo is now brown and the bleed appears to be under control once again. Shawn's jeans will need a trip to the washing machine as well!

Today has started out much better than yesterday.  We continue to be faced with the reality that Hope's life is hanging on a thread, and she is in critical condition.  Unlike yesterday, the doctor working with her in the PICU, is passionate about trying to save her.  It's a breath of fresh air to work with a much kinder Intensivist.

A large team of doctors spent over an hour discussing Hope's multiple complications.  We now have a plan for today and are ready to walk through it.  Hope continues to be extremely uncomfortable.  She is now on a new sedative and pain medication.  We're hoping this will make the difference and settle her to sleep more often.  Shawn and I find ourselves easily drained by the constant fussiness that appears to be impossible to settle.  Hope is currently sleeping in her crib, her heart rate is back down and her breathing more controlled.  Praise the Lord for the moments of peace that she experiences throughout the day.

We were informed today that intubating Hope would likely put her in more critical condition.  Once she is intubated (if needed), the blood flow to the lungs would decrease and she would only survive for a couple of days.  Knowing this, we are watching her oxygen levels more closely and begging God to keep her breathing stable.  If she needed to be intubated, she would also likely need to return to Edmonton.  This would be a precaution in case she needed to go on the heart and lung bypass machine.  We are thankful not at this point.

Our cardiologist this week has been a true gift.  She is honest, not trying to keep information from us just because it is difficult to hear.  She is passionate about seeing Hope survive, no matter what the odds are against her.  The medical team makes a huge difference each day for us.  We are either blessed with doctors and nurses that fight for our girl, or others that seem to have already given up on her.  The ones that have given up tend to see more of my angry side.

Last night as Shawn and I lay in bed, we talked about miracles.  We spent time dreaming about how it would feel to walk in one day and find that Hope had a whole heart.  How would anyone be able to explain that medically?  Hope's surgeon has held her broken heart in his hands, there is no denying that it was only half there.  If suddenly her heart was whole, only God could receive the glory for such a miracle.  I can only dream and hope for a miracle so beautiful.

We are aware that our daughter's life span is not long.  We realize that our days with her are precious and need to be cherished.  For that reason, we pray that she quickly stabilizes enough to come home.  Whether we are given years or months with Hope, we desire to create positive memories as a family.  That is more likely to happen with us all living together in our home.  We pray that it is not only possible, but that it will happen soon.

I feel completely exhausted.  I find moments of joy throughout the day when Hope is settled in my arms or Sadie is giggling on my lap.  Life is not always full of sorrow and tears, but it is exhausting just the same.  I dread the fact that Christmas is quickly approaching, it will only make being away from family more painful.  We need your prayers as our strength is 100% from the Lord and not our own.  We do not have any strength of our own remaining.


Friday, 23 November 2012

Only He is able

It's Amy's mom here.  Sometimes it's just too hard for Amy to write the blog.....this is one of those days.

This afternoon was characterized by a steady flow of doctors coming in to talk with us.  When they weren't in the room, they were gathered in the hallway outside Hope's room discussing her complicated medical state.  We spoke to anesthetists, G.I. specialists, cardiologists, intensivists, surgeons and then some.  The final decision was that Hope's condition posed too great of a risk for surgery and that she is too compromised, because of her previous experiences with anesthetics, to undergo another anesthetic at this time.  Basically, the risks outweighed the benefits.

The thought is that Hope's bleeding is either coming from a varices (extremely dilated sub-mucosal veins in the lower esophagus) or a stomach ulcer (stress ulcer probably a result of the heart surgeries).  If it's coming from a varices, then you need to treat it with sclerotherapy during surgery.  If it's an ulcer, it is treatable with medication and almost always improves with time.  Because Hope is at such a high risk for being put under anesthetic, the surgeons feel, if it proves to be an ulcer, the surgery would be unnecessary and possibly at great cost.  They would like to wait until Monday to reassess at that point.  If Hope were to have another massive bleed on the weekend, they would have no choice but to operate, but this is not a good option, as the weekend is not staffed with the "A" team that they feel is imperative for Hope.  They are treating her with ulcer medications and hoping that there will be no additional bleeding over the next 2 days.  She has been put back on the coagulant meds that are used to clot her blood, but they are hoping to stop them and get her back on the blood thinners as soon as possible, so that she will not develop any clots where they shouldn't be.

Hope's portal vein hypertension is felt to be a major issue in all of this.  At one point today, in discussions with the various medical personnel,  Shawn and Amy were told that Hope is not a candidate for her third open heart surgery and not a candidate for any future heart transplant.  They made it very clear that Hope's life span is likely not going to be that long and that there is not much hope for her future.  You can imagine how hard it is to hear this news.  To say we feel very discouraged is an understatement.  Unless God works a miracle in little Hope's life, we may have to say goodbye to her a lot sooner than we ever planned.  We have not given up, because we believe that God is able, but we are feeling physically drained and emotionally discouraged.

Amy and Shawn spent much of today in tears before the doctors, begging them to do something and not just let their daughter slowly die.  Hope is struggling to breathe on and off and is on constant oxygen once again.  She is uncomfortable and irritable through most of the day. It is almost too much to watch at times.

Hope is God's child first.  He has trusted her into Shawn and Amy's care.  Please pray that He will give them wisdom and discernment as they fight for her life.  We are asking the Lord to give them strength and endurance on this most difficult and often discouraging journey.  Together, may we never give up hope.