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.

Clinging to Hope

It's Amy's mom again, Charlotte.......

This morning, at 8 a.m., Hope started bleeding again.  She has had 2 bloody diapers so far this morning.  She is in a lot of pain and is now on high flow oxygen, as her breathing has become more laboured.  An echo of her heart shows that there is decreased blood flow to one of her lungs.  She is looking more "puffy" as well.

The anesthetist spoke with the doctors in Edmonton this morning and told Amy and Shawn that there is even more concern, than originally thought, about the risk of putting Hope under anesthetic.  The doctors want to sit down with Amy and Shawn and discuss just how far they should push Hope in this regard.

The cardiologists are pouring over the echo and x-ray right now to see if they can pinpoint the cause of this restricted blood flow to Hope's lungs.

We are very aware that Hope's options are not looking good for her but we, nevertheless, continue to ask God for healing.  As long as she has breath, we will pray.  Our hearts are breaking and there simply are no words to describe the desperation you feel when someone you love so much appears to be slipping away before your eyes.

Please pray for all of us.  Pray for Hope that she will feel the arms, of the God that made her, wrapped around her crying over her.  Pray for Amy and Shawn, as they continue to fight for the life that is so very precious to them.  Pray for Sadie, that she will feel loved and secure, even though things are so disruptive for her.  Pray that God will be glorified and honored and praised amidst the pain and anguish of these uncertain times.

"Why am I discouraged?  Why so sad?  I will put my hope in God!  I will praise him again - my Saviour and my God." - Psalm 42:11 (NLT)

Thursday, 22 November 2012

The sun will come up...

It's a new day, another day with Hope and another miracle to add to our list.  Hope's bleeding appears to have stopped around 6pm last night.  She is decently stable this morning and the doctors are more positive about her outcome.  The medication she is on for the bleeding (it helps shrink the veins to stop bleeding) is only effective in some patients.  We praise God that it, combined with many prayers, has been effective for Hope.

I asked the cardiologist this morning if she had expected Hope to survive the night.  She said that she was surprised to see her this morning.  Wow, what a mighty God we serve.  We are not out of the woods, Hope remains in critical condition.  There is hope for her future and we will cling to that hope.

The plan is to allow Hope's body to rest today.  She is scheduled for an emergency slot in the OR tomorrow.  They would take her today, but feel they will be more properly staffed tomorrow and feel that this is a safer bet when dealing with Hope.  Today they are contacting the doctors in Edmonton to get to know Hope's history in the OR and be as prepared as possible.

Shawn and I spent the night in Hope's room last night.  It was by no means a restful or pleasant sleep.  I was sleeping in a recliner and Shawn on a mini couch that turns into a bed.  We are both tired this morning and running on caffeine and the prayers of many.  Hope is clearly in pain and is on a few pain medications to keep her more comfortable.  I was able to hold her for a bit today and she was less opposed to this than she was yesterday.

I am not making many friends in the medical community.  I have learned that being quiet is not in Hope's best interest and that you can be respectful and still firm.  This morning they began discussing Hope's infected PICC line and the possibility of pulling it in the OR tomorrow.  I told them that our preference was to keep the line if possible and treat the infection at the source.  The Intensivist doctor said that our preference was not their concern.  I boldly responded that our preference has saved her life on more than one occasion.  If it was not for our presence, her line would have already been pulled and Hope wouldn't be with us today.  This silenced the entire room and changed the tone for the rest of the meeting.  I may not have medical experience, but I have more experience with Hope than any of them and that makes my opinion extremely important.

Sadie was thrilled to wake up and find her "Auntie 'Y'indsay" all the way from Squamish, and Grandpa all the way from Michigan, in her house. We are comforted by the fact that our little girl is feeling spoiled and not forgotten.  We are so thankful for the support of friends and family....  A complete stranger left a gift card at the hospital last night for our breakfast this morning.  A friend texted me this morning to see if we needed breakfast brought up to the hospital.  There are two corporate times of prayer planned for Hope this evening.  One at Bonavista Baptist Church in Calgary at 7:30pm and one at Compass Point in Burlington, also at 7:30pm.  We are so blessed by the commitment of so many to pray for our sweet girl as she fights for her life.  Thank you to all who are praying.

Wednesday, 21 November 2012

By His Blood

I believe that Jesus Christ died on a cross, a gruesome and terrible death.  Not because he wanted to, but so we could receive forgiveness for our sins through His sacrifice.  To so many reading this blog, that sounds crazy and you don't believe it.  I truly wish you did.

Today I have watched my little girl bleed.  Hope has been bleeding all day, they don't know exactly where it is coming from and she is not stable.  We pray that the medications they are giving her will clot off her blood.  It will likely cause some other major issues for Hope and may very well clot off the shunt in her heart.  At this point, you have to do what will save her life and not focus on the consequences.  They need the bleeding to stop, not only to save her life, but to allow them to put a camera down her throat to find the source of bleeding.  If the bleeding continues, it's very difficult to see, and try to resolve the source of the bleed.

Hope's feeding tube is now being used as a drain to draw the blood out of her stomach.  Her diapers are full of nothing but blood.  Thankfully the blood appears to be thickening, a sign that the medication is working.  Hope is clearly uncomfortable and being given morphine for the pain she is feeling.  She is back on oxygen and on more new medications than I can keep track of.  I have not enjoyed much of today, as this is absolutely horrible to live through and it breaks my heart that the hospital is full of families in pain.

Hope is now in PICU and Shawn and I will spend the night cramped together on a single bed that is currently a chair.  Sadie had to be picked up and taken away once again.  It is more painful each time.  My sister is on her way to spend the next couple of days with Sadie.  Shawn's parents are in the city and my dad is flying in to join my mom tonight.  Shawn's brother is also here in Calgary.  My brother and his family live in Australia and are not able to be here right now.  I ache for my family that is not here and yet I hope they don't have a reason to come and bring a black suit.

I have cried a lot today.  The only thing that I truly find comfort in is knowing that, if God takes Hope, she will no longer feel pain.  That is why the blood of Jesus is so important.  Hope would spend eternity in paradise and never have an IV attempted on her again.  I pray that God saves her, but I also pray she doesn't have to suffer forever.

I'm not sure if Hope's life is going to be spared, but I pray that whatever happens to Hope, it saves the lives of others.  If Hope's story draws one person reading it to their knees, her life has served incredible purpose.  I pray that I meet people in Heaven and hear that they are there because of the difficult road that we have journeyed with Hope.  That is the only thing that could make this pain worthwhile.

Tuesday, 20 November 2012

Between a Rock and a Hard Place

The internet is not working at the hospital tonight and so Amy has asked me (Amy's mom) to write the blog for her........

Today was another tough day for Hope.  She continues to battle this fever and Tylenol has not been successful, as of yet, in breaking it.  She was re-x-rayed today and her x-ray continues to not look good.  They are still not ready to make a definitive diagnosis of NEC, at this point, but they worry that that is what she has.  Hope's feeds have now been turned off and we are back at ground zero in the feeding department.  The plan is to ultrasound her tomorrow and, if the ultrasound looks bad, we will begin full NEC procedure.  The reality of this sucks really bad, there is just no nice way to say it.  If you have a minute, you can google necrotizing enterocolitis and I'm pretty sure you will come up with the same sentiments.  

To make matters even worse, Hope received a positive result for a line infection.  This means that her PICC line, which is our only access point, is infected.  There is potential that they will have to pull this line.  If they do, they will have to take Hope into the OR tomorrow to attempt another insertion.  Chances are slim that this will be successful and, when Amy asked the doctor tonight, "What will happen if she has NEC and we have to pull the line?", the doctor answered, "We would be screwed".

Tomorrow is going to be a big day for next steps for Hope.  We basically need a miracle to happen overnight once again!  We are asking people to pray fervently that her level of infection in the PICC line is low enough that we will be able to treat the infection with strong antibiotics through the infected line - this is the only possibility we have of saving that line.  We also need to pray and plead that Hope does not have NEC, as this will put her on long term liquid nutrients, which will always require a PICC line and will eventually begin to attack her liver, which is already comprised because of the portal vein thrombosis.  Unfortunately, nothing is simple with Hope's complicated anatomy.

Hope is still very uncomfortable and they think it is because of the pressures in her head.  Because she is a cardiac patient, our pain options are limited.....Tylenol or Morphine.  Unfortunately, the options in between cannot even be considered.  It is so hard to watch little Hope struggle and restlessly toss and turn, as she fights so hard to sleep.  I can hardly bear it for a mere couple of hours a day and yet Amy is there 24/7, pushing through the exhaustion and emotional turmoil, all the while being Hope's biggest advocate and voice in the midst of so much confusion and indecision, not to mention the immense heartache and disappointment. The thoughts of going home with little Hope were just around the corner and almost in sight.  It's so hard for Shawn and Amy and all of us to accept this latest turn of events.  

Again, as I head to bed and try to sleep, I am bombarded with the myriad of unknowns that tomorrow and the days to follow hold.  It's in times like these, that I have to remind myself of the things that I DO know.  I do know, without a doubt, that God loves our little Hope more than any of us do, and that His heart is breaking right now too, watching her struggle through the pain and discomfort.  I know that He deserves our faith and our trust, even when we are straining to make any sense out of our present darkness and uncertainty. I know that He is still good and that He is my Rock, my Deliverer, my Strength, my Portion, my Stronghold, my Friend, and my Healer.  I will continue to ask for Him to heal Hope and to move in a mighty miraculous way in her frail little body, like He has done so many times before.  And, even if the healing doesn't come, Lord help me to still proclaim, "Blessed be the Name of the Lord".

Please, take some time to bring Hope, her Mom and Dad and her sister Sadie, and her present situation to God in prayer.  We know there is literally an army that God Himself has raised up to intercede for Hope and her family and we just ask you now to pray like never before.  Oh God, who holds this life in His hands, may it be your will for her to overcome these medical mountains.  To You be all the Glory.

"For I am the Lord, your God, who takes hold of your right hand and says to you, "Do not fear; I will help you".  - Isaiah 41:13

Monday, 19 November 2012

The Sadie Shuffle

I keep telling friends that I don't know anyone that can do this, but need someone.  I finally realized that  it would be easier to just ask if there is anyone that someone knows who could fill this roll.

My mom is heading back to her home in Michigan this weekend.  After so many months with our family this year, it's only fair to give her back to my dad.  It will be tough to see her go and we wish we could keep her, but know that my dad has been patient in waiting for us to return her.  My mom has been Sadie's primary care giver while we've been in Edmonton.  Now that we are back in Calgary, we have previously relied on friends and family to watch Sadie.  It involves her being moved around a lot and is not as easy on her as we'd like.  We aren't thrilled with the idea of sending Sadie to a daycare as it would expose her to so many more germs.  Germs that she would then bring to the hospital while visiting Hope.

Ideally we'd love to find a Nanny or babysitter that is currently available but not looking for something long term.  Shawn leaves the house each morning by 7:30, so we'd need someone to start as soon as he left and stay until he returns around 5:30.  We're even ok with someone that would be interested in 3 days a week as we have family and friends that could handle the other two days a week.  Sadie enjoys sleepovers at her Oma and Opa's and would be happy to stay there for a night each week.

If I had to make a guess, I would guess that Hope will be in the hospital for at least 3 more weeks.  If we could find someone that is interested in doing this until Christmas, that would be amazing.  If we are not able to find a consistent person, we'll go back to the Sadie shuffle.  She spends each day of the week with a different person.  It's more difficult to organize, but it may be our only option.

Thank you for caring about the logistics of our situation and please pray for us as we look for someone to fill this need.  Sadie is such an amazing sister to Hope, we don't want her to feel insecure through this process.  The more consistency we can give her, the better.

Our Drama has No End!

I cannot even believe that our life continues to collect drama.  Seriously?!?!  Last night was the worst night I've ever had with Hope.  At 4:30 am I finally caved and allowed them to give her Morphine so I wouldn't lose my mind.  Hope slept for 3 hours, and then got up for the day.  As a result, I am functioning on only 3 hours of sleep as well.  Not a pretty sight.

At 11am this morning, the nurse discovered that Hope had a high fever.  She also had a poop that was suspicious looking.  They sent it off for tests and found that it was full of blood.  We were sent down soon after for an X-ray and it didn't look great.  Hope's bowel walls are inflamed and swollen, and it looks as though she may have an infection in her tummy.

They had originally decided not to start antibiotics and to up her feeds a bit and see how she did.  They wanted to see if she would react in order to diagnose NEC (necrotizing enterocolitis).  If she does have it, it will set us back a lot and will almost guarantee Christmas in the hospital for our family.  Hope's temperature was just checked once again, and it's even higher.  As a result, they are changing the plan and will start her on a strong antibiotic right away.

Please pray that whatever is causing Hope's issues will quickly reveal itself.  The doctors are looking for direction as they treat Hope's symptoms, but are still unsure of an official diagnosis.  Hope continues to be miserable, and I am in deep fear of having another night like last night.  Please pray that she will be able to settle and get a good sleep.  I think it would be good for both of us!

Thank you for continuing to care, I know our drama appears to have no end.

Sunday, 18 November 2012

Comforts of Home

We have been back in Calgary for 48 hours now.  What a joy it is to be in our familiar setting.  Although we are still not able to live as a family in our home, we believe that day is approaching.  Looking back at all that we have overcome during our 3 months in Edmonton, I can only praise God for his faithfulness.  Thanks to the immense kindness of friends and family, I have managed to unpack, re-organize and settle back into our home.  I wish you could all see the joy that Sadie experiences being back in her home.  She is so excited to play with her old toys, sleep in her purple room and see the faces of those she loves.

We have been so impressed with our care upon returning to Calgary as well.  One of our favourite cardiologists, Dr. Fruitman, is on service currently.  She has been an amazing advocate for Hope and is getting others on board to move things forward.  The GI team has committed to following Hope and has been actively involved in her care.  We are going to be making a lot of changes this week, and it may be full of ups and downs.  We would appreciate your prayers for wisdom and discernment as we work to get Hope eating again.

Hope's belly is at an all time low of 38 cm!  This is very exciting, but also concerning as she has lost weight once again as well.  Our hope is that she'll gain weight, but maintain her small belly as well.  Today we switched Hope back to her original formula.  This was changed in Edmonton as their hospital doesn't carry Hope's formula and they didn't feel it would make a difference.  I tend to disagree and today we are testing that theory.  If she does well, tomorrow they will pull up Hope's feeding tube and she will start receiving food in her stomach once again.  If that also goes well, they will start giving Hope bolus feeds (large amounts at one time) and take her off continuous feeds the next day.  Although she remains at 13 mls an hour, bolus feeds would get us closer to home.  GI has a positive outlook for Hope's treatment and I am trying not to let negative experiences cloud my ability to believe them.  I would be thrilled to make it home before December 1st, but would take December 25th if Hope needs that much time!

One glorious thing about our new living environment, is the private room!  It is so nice to not worry about anyone other than Hope waking me up in the night.  I'm sure I'll soon tire of the cafeteria food, but I am thrilled to be back in Calgary and would eat oatmeal 3 times a day if I need to.  Thank you all for praying us home!  Thank you God for being faithful, in sickness and in health, we believe you are good.

Friday, 16 November 2012

A Year in our Life

It's hard to believe that one year ago today, I woke up early and put Sadie in some jeans and a pink shirt with green polka dots.  Shawn had planned to go into work a bit late, and as a family we drove to the ultrasound clinic.  We were so excited to find out if our baby was a boy or a girl.  That day ended much differently than we could have ever imagined.  The sex of our baby no longer mattered to us.  All we wanted, was a baby that would live.

The most difficult task that day, was calling those we loved to tell them that our baby was missing 1/2 of her most important organ, her heart.  We were quickly exhausted and found ourselves unable to continue.  With that, the blog was born.  A way to share the ups and downs with everyone, all at once.

We never imagined that total strangers would read about our unborn child and begin to pray for her.  As family, friends and complete strangers began to follow the blog, we were humbled by the response.  Throughout this year, we have never doubted that we are not alone.

One year after this life altering news, we find ourselves back in Calgary with our daughter (Hope was airlifted back to the Calgary Children's Hospital this morning).  Hope has 2 heart surgeries behind her and we pray, a future ahead of her.  So much has changed, but one thing remains.  We believe that God is in control and is carrying us through this journey.

Recently my mom shared this journal entry with me.  She wrote this 2 days after I made that first difficult phone call to my dad.  I'm sure he never imagined the words that would come out of my mouth that day as he answered my call.  "Dad, there's something wrong with the baby.  It's missing half of it's heart and it doesn't look good.  Please tell mom to call me."  As she processed the devastating news, she wrote this...

"It’s been 48 hours since that heart breaking phone call that brought a quick end to just an ordinary day.    I had already been dreading the day – seems so lame now to think I thought going to the dentist to get my teeth cleaned was daunting.  So petty and frivolous now.  As I drove into the driveway of the dentist, trying to shove an apple down my throat so I wouldn’t be hungry during my appointment,  I scrambled to answer my ringing cell phone.  Ian’s voice was direct and suscinct.  “Call Amy right away on Shawn’s cell phone.  There is a problem with the baby – it only has half a heart”.   My first thoughts were, “that can’t be” – how can a baby be living at all if it only has half a heart?  I first ran into the dentist office to tell them that I had a family emergency and couldn’t possibly stay for my appointment – I told them I would call to rebook through what was the beginning of a waterfall of tears.  Before leaving the parking lot, I nervously dialed Shawn’s number and Amy immediately answered.  She was frantic and a couple of times I had to ask her to calm down so I could understand her.  She said again “the baby only has ½ a heart”.  Her words felt like heavy weights crushing my chest.  I could hardly believe what I was hearing.  I was inwardly hoping she was simply overreacting, especially with my already preconceived notion that surely no one could even be alive with such a thing  - even while in the womb!

As the day progressed, it became increasingly clear.  Amy and Shawn’s baby did indeed only have ½ a heart.  Only the right side (the weaker side) of her little heart was working.  The formal diagnosis is called Hypoplastic Left Heart Syndrome.  It is a very rare and complex terminal heart defect.  Out of 10,000 babies being born, only 1-3 babies are born with this.  I couldn’t get to the internet fast enough.  Once I knew that Amy and Shawn were safely home and no doubt attempting to process this devastating news themselves,  I tried to absorb all I could in order to get an idea of just what we were facing.  The statistics are staggering and the stories a mixture of encouraging and heart wrenching.  Basically, the only way to save these little ones’ lives is to risk them entirely.  The tears were uncontrollable.  Almost 48 hours has passed since then.  I still can’t believe the numbness that has engulfed me.  As I sit here writing this, I am struck by the inability that has overtaken me to do anything remotely productive.  I seem to be only able to just sit.  And pray.  My thoughts constantly leap to the fact that the only hope that any of us has in this situation comes from God.  I am so mindful of the fact that he has fearfully and wonderfully formed and made this little girl in Amy’s belly and He is still a God of miracles.  The Red Sea was no great feat for Him.  Why, he could shut the mouths of lions, cause the sun to stand still, turn water into wine, make a donkey speak and over and over gave sight to the blind, leaping legs to the lame, and even life to the dead.  He is certainly capable of fixing the broken heart that he has already made.    My first task at hand was to raise up an army of prayer warriors.  Ian and I have always acknowledged the power of prayer and I knew that, if we were going to survive this nightmare and see this little girl have any chance at a normal life, God had to do the work.  We needed people to pray.  I emailed and Facebooked just about everyone I knew and told them of the situation at hand and asked for their prayer.  I have never before coveted the prayers of God’s people for anything in my life like this.  I am desperate for friends and family and complete strangers to join with us in praying for this little life.  We don’t know what is ahead but we know who is leading the way.  We choose to walk by faith and not by sight.  We choose to simply trust.

“Oh God, our lives are in your hands.  And the life of this little girl is laying at your feet.  We know that you have intricately made her and that you know every detail of her underdeveloped heart.  We don’t ask why because how we could ever question an all-powerful God on His methods or plans?  We recognize your power, your sovereignty, your Holiness.  And we simply put it all in your hands.  I have so many fears, so many unknowns, so many worries.  But I give them all to you.  God have mercy on us.  God, wrap your arms around Amy and Shawn and give them constant assurance of your presence.  Let them know that you are there, walking every step of this torturous road with them.  May they have a peace that is unexplainable.  May they have a strength that is beyond imagination.  May they have a hope that is unprecedented.  God, work a complete miracle in this little girl.  Give her the heart that she needs to live in this world and become a world changer for you.  Give her a functioning left side of her heart and grow the arteries, aorta, inferior and superior vena cavas and all the correct valves etcetera that she may need  to have a healthy and pumping heart.  I pray that, if it is not your plan to heal her heart completely before she is even born, that the mechanics and anatomical prerequisites to be able to withstand any surgery that she may need will be there to give her the best fighting chance and outcome.      God, work a miracle in everything you do.  We love you and we look to you for our hope, strength, wisdom, and encouragement .  Lead on oh King Eternal.".......

As you know, God did not choose to heal Hope's heart before she was born.  That was obviously not His plan for her life.  He did, however, graciously allow her to survive two open heart surgeries and numerous procedures and we thank and praise Him for that.  He has continually been at work in ways that we probably may never even know and He has used Hope's journey to teach us more than we could have ever imagined.

A beautiful, yet difficult year comes to an end.  We look forward to the future although it is full of unknowns.  To the masses that have been so faithful to pray for us and carry our burdens as their own, we are forever thankful.

Wednesday, 14 November 2012

Potential Plane Ride

Last night was a terrible, no good, very bad night.  Hope was still wide awake and miserable at 2:30am.  I finally convinced the staff to call in the doctor and get Hope some morphine immediately.  She was miserable and it appeared to me that we were torturing her.  After the morphine, 2 sedatives, Advil and Tylenol, Hope was able to sleep for 3 short hours.  We spent the rest of the night attempting to settle her and failing miserably.  It was more terrible than I had imagined it could be.

I was completely exhausted and out of energy.  Shawn had to take the afternoon off to stay with Hope so my mom could stay with Sadie and I could have a nap.  I had a good 2 hour nap and started to feel a bit better.  I'm terrified to sleep here again after last night.  Hope has a new roommate and I feel sorry for him and his family.  They have added morphine to Hope's meds again and we plan to give it to her all night long, she needs her sleep so badly.

They had looked at transferring Hope today, but weren't able to find a bed in Calgary.  They will reattempt her transfer tomorrow morning if there is a bed for her.  I spent some time this evening packing up our apartment.  We still have a lot to do, but have been able to get a bit more organized overall.  

They suggested stopping Hope's feeds today in case that is causing her to be upset.  I don't see any signs of her stomach being in pain and don't believe that's the issue.  I urged them not to stop her feeds as we're now 1/3 of the way to a full feed.  Her belly was only 40 cm this morning and we praise God for that blessing. 

Tuesday, 13 November 2012

High Maintenance Hope

Let's be honest, Hope has never been low maintenance.  The last few days have been pretty rough with Hope.  She is often miserable and impossible to settle.  Even the big guns (mainly narcotics) are unsuccessful at settling her.  They believe she has a terrible headache as she adjusts to the new pressures in her body after surgery.  After finally getting Hope to sleep, with the help of Benadryl and a swing, the nurse had to give her an injection.  That was an hour ago, Hope is not looking remotely ready to fall back asleep.  This is going to be a long night!

That's right, I have to spend the night here at the hospital.  Hope was transferred out of ICE this evening as another child on the ward was not doing well and needed her spot.  I love my girls like crazy, I also really like to sleep at night.  Tonight is going to be a test of my patience and mental sanity. I may have some Christmas cards completed by morning, I'm trying to focus on the positive side of the situation.

We began discussions with the staff about a transfer back to Calgary today.  It was a severely busy day on the unit and no one was able to get back to us.  At one point we heard Hope was being flown back tomorrow, but that was never confirmed.  They did confirm that Hope is "heart" stable and no longer needs to be here.  The Calgary team is just as capable of following Hope through her feeding difficulties and will likely take over.

There are always pros and cons with either hospital.  I look forward to not sharing a room with another child and their parent each night.  I look forward to seeing so many familiar faces and spending time (at the hospital) with friends in Calgary.  I am excited that Shawn and Sadie will be able to sleep in their own beds each night.  I am encouraged to take a step in the right direction.  I struggle with the location of the children's hospital in Calgary.  We don't live too far away, but I still see less of Shawn and Sadie when I'm living there.  We have to coordinate a lot more to have Sadie cared for while Shawn is at work.  I have to train a new team of doctors to be sure we don't lose any of the ground we've covered here.  My Martha Stewart side does not like getting home with piles of stuff, and not having the time to put everything back in its place.  I want to nest and make our home, our home once again.

Please pray for us as we plan to make this huge transition sometime this week likely.  We have a lot of packing, cleaning and planning to cover.  It will be an adjustment, we've been here since the middle of August.  We are blessed that Hope is alive.  Although she is grumpy, our time with her is cherished.

GI Specialist, Amy Koslowski.

I feel guilty when I'm frustrated in my current situation.  God has answered so many of our prayers and it feels like I'm not thankful when I'm frustrated.  The very fact that Hope is alive shows how blessed we truly are.  I am human, and I can't help feeling down when things aren't going well.

Hope's heart is strong and doing well, for that we are very thankful.  Unfortunately, Hope's stomach is not doing well.  After reaching only 5mls an hour, Hope began to show signs of not tolerating her feed.      I'm not sure what they'll do at this point.  If we lose Hope's PICC line, we will be in BIG trouble.  Knowing that Hope does not do well with lines, and this one has been in for 3 weeks, we need to stop relying on it.  This is not possible until Hope is receiving enough nutrients from her food alone.

We're beginning to wonder if we should push to return to Calgary at this point.  We're not sure if we really need to be in Edmonton any longer.  We're going to talk with the staff today and find out what they think about this idea.  There are downfalls to both locations, it's inconvenient either way.

Please pray for wisdom for the doctors.  We've learned that dealing with stomach issues is extremely frustrating.  The doctors rarely come to see Hope, are extremely vague in Calgary AND Edmonton.  We don't seem to make any progress and are usually making the decisions about her care ourselves.  This sounds arrogant, but I feel like I'm qualified to be a GI specialist after my experience with them.  I just want a GI doctor to pick up Hope's cause and be passionate about seeing her through.  Hope needs food to live.

Last night as Shawn and I were in bed, I cried and told him that all I wanted was my two girls in one house.  It sounds so simple, and yet it feels completely impossible.  I'm tired and my energy is low, I need a glimmer of Hope that we can get out of the hospital soon.  Shawn is trying to encourage me and I need to be careful not to tear down his positive attitude.  I'm praying today has some positive news.

Sunday, 11 November 2012

Shawn, with an edge!

Today was a good day for Hope.  They were able to remove the remaining tubes from Hope's chest.  As a result, they stopped her morphine as well.  Her pain is now managed by Tylenol and Ibuprophen and the odd dose of sedation.  Hope is clearly more comfortable and slept most of the day away.  The only things remaining are Hope's PICC line, which we'll need for awhile, and her pacemaker wires.  These are not currently being used and will be removed tomorrow.  Once these wires are removed, she will likely be moved to the ward.

Shawn was with Hope this morning in the PICU when they mentioned moving her directly to the ward, instead of I.C.E..  We were obviously very uncomfortable with this idea.  She still has wires protruding from her chest that go directly to her heart!  Shawn pulled out his firm voice (this is only heard once every 20 years or so), and told them we weren't comfortable with that.  It was a decision fully based on bed shortages in the PICU.  We have been the parents waiting for a bed in PICU, and the parents that were moved out too early.  We almost lost Hope when they flew her to Calgary before she was ready because of a bed shortage.  We refuse to be moved until Hope is ready, she's just too fragile.  ICE is a much safer place for Hope until all her wires are removed and her risk of infection has decreased.  

Hope's tummy was at 40.5 cm today!!  I believe her lowest recorded measurement is from early August at 39 cm.  This is incredible and we are very excited to see her making so much progress.  We had been told her tummy would likely be at an all time high after surgery.  Praise the Lord they were very wrong!  We moved her feeds up to 3 mls an hour and hope to continue increasing her feeds.  Please pray that she'll tolerate the increases, it's the main thing keeping us in hospital at this point.  We need Hope to receive at least 30 mls an hour before they will consider sending us home.  It feels like a long way off at this point.

This is one of the most difficult stages.  When we know we'll be in Edmonton for a long time, we give up the idea of going home and get comfortable here.  As soon as there is even a hint of possibility to go home, we start to really miss our home and long to go back.  Please pray that God gives us wisdom as we are involved in making the decision about Hope's return to Calgary at some point.

Saturday, 10 November 2012

More Nurses, Less Snow.

It was wonderful to walk into the PICU this morning and find Hope sleeping peacefully.  She continued to have a few moments during the day that required some extra sedation.  She was noticeably more comfortable through and is doing extremely well after an open heart surgery.  Dr. Ross commented again on how well she was doing.  He also continues to comment on how much she needed the surgery and should improve as a result.  I have no regrets for pushing them to take Hope into the OR, regardless of the risks.

Hope was taken off the heart assistance medication this morning.  She appears to have not noticed this change.  They started to wean Hope off the high flow oxygen today as well.  She is tolerating this well and should be on basic oxygen by morning if all goes well.  Praise the Lord for this positive step in Hope's recovery.

There's a chance they'll be moving Hope up to ICE tomorrow if she continues to do well with the oxygen weaning.  Hope is still only on 2 ml an hour of feed.  This gives her a total of 48 ml in a day, and she needs 700 mls a day.  We have a long way to go and she is already showing signs that she's not ready to go up on her feeds.  This could keep us in the hospital for a long time, so please pray for healing in her digestive system.  We are praying that the blood flow to her tummy will improve her entire digestion system.

The PICU was short-staffed today in a huge way, due to several nurses calling in sick.  Hope was sharing one nurse with another high maintenance patient.  This makes me uncomfortable for a lot of reasons.  We are praying that we'll have our own nurse tomorrow morning.  I simply don't want anything to be missed before Hope is sent up to the ICE.

I feel physically tired tonight, although I'm having a fair amount of sleep each night.  I'm hoping my body doesn't get lazy with winter being here.  It's freezing cold and very snowy in Edmonton right now.  It becomes a mental battle to go outside!  Please pray that my spirits stay up in the midst of my least favourite season...winter!  It's probably good that Hope doesn't need to go outside, it's far too cold for her!

Friday, 9 November 2012

That's My Girl!!

This morning at 4:30am the phone rang as Shawn and I were sleeping.  I knew it was the hospital and felt instantly sick to my stomach.  The night nurse told us that Hope was not very stable and they had put her back on oxygen and a heart assistance medication.  I wish I could say that I was shocked, but sadly, it was quite the opposite.  It almost felt like the world had come back together and things were as they should be.  Hope doesn't go through a major surgery without a set back, that's simply not how she rolls.  This was the Hope I knew, the one that likes to keep you on your toes...and, more importantly, on your knees.

A few hours later we arrived to find Hope much more swollen and extremely unsettled.  She received incredibly high amounts of sedatives and narcotics today.  She would only be temporarily relieved though.  It was heartbreaking to watch.  The Glenn causes incredibly painful headaches as the body adjusts to the new pressures in the body.  Hope is clearly feeling them and is miserable, so we pray they don't last for too long.

A morning X-ray showed a lot of fluid in and around Hope's right lung.  This should have been draining through the chest tube on that side, but was not.  A surgeon came in to reposition the tube and felt after he finished that it had not been a success.  Within an hour as we met with the doctors about what to do next, God intervened.  Hope's chest tube drained 35 ml of fluid in front of an audience of many!  It was amazing, and we were thankful not to have to make a trip back to the OR.

An ultrasound and echo were done in the afternoon.  Hope's heart function is looking great and does not appear to be the cause of our problems today.   She does, however,  have a large amount of pressure where the SVC and the Pulmonary Arteries were attached.  This is not surprising due to the size of the pulmonary artery.  They feel that it will naturally expand over time and the pressure will stabilize.  Sadly, they found a clot that has formed as a result of the surgery.  We are encouraged that it is currently very small and only partially attached.  They are hoping that it will either dislodge and filter through the lungs, or dissolve.  Please join us in praying that this is the case and we don't run into further complications because of the clot.

A second X-ray was done this evening and verified that the chest tube has removed the fluid around the right lung.  She is still quite wet on the lungs and is now receiving even higher doses of diuretics.  We are hopeful that her lungs will continue to dry out and be healthy again soon.

Hope will likely spend the rest of the weekend in the PICU and may go up to ICE if she does well over the next couple of days.  The staff are suggesting that we stay in Edmonton until Hope is extremely stable all around and not just surgically stable.  They usually send us back to Calgary as soon as the heart surgeon is no longer needed.  It may be a much slower transition this time, and we feel this is likely best for Hope.  Maybe we'll have our friends decorate our house for Christmas!

We are praying that tomorrow will be a more positive day for Hope.  We are so encouraged to hear of the number of people praying alongside us.  I truly have no words as I stand over Hope as she struggles.  I know that God knows my heart and hears the words the rest of you speak.  I know that if I start to pray at Hope's bedside, I just cry and lose control.  Thank you for stepping in when I'm not able to speak.

Thursday, 8 November 2012

Who's Child is this??

You might not believe this, but sometimes I have a difficult time hearing all the good news from the doctors.  I'm so used to hearing terrible news that I remain very guarded with all the encouraging reports that continue to come in.  Hope had an amazing day!  We saw Dr. Ross in the morning and he expressed that she was doing so much better than he had expected.  They extubated her first thing in the morning, took her off all heart assisting drugs and removed the ART line they worked so hard to get in yesterday.  Later in the morning they removed her chest tube, the most uncomfortable one.  She still has two small drains remaining, but appears to still be comfortable.  In the afternoon, they removed her central line from her neck.  We are glad to see the central line gone, as every time she has had one before, it resulted in a blood clot.

By 3:30 pm she was comfortable enough, on narcotics, to be held!  It was incredible to have her back in my arms, I didn't miss a single day holding her!  She has been weaned down on her pain medications and our goal is to have her on only Tylenol sometime soon.  We were also told today that they plan to move her up to ICE tomorrow!  I cannot believe she's ready for ICE, and yet I can clearly see that she is.

Thank you so much for praying Hope through this difficult time.  She has done incredibly well so far and we continue to see the power of God moving through her life.  You all play a role in getting her to where she is, we have much to celebrate.  Please keep praying that she will continue to do well and do better than expected!

Wednesday, 7 November 2012

Hope Survived the Glenn!!

Today was a tough day.   The time went by way too fast in the morning and yet painfully slow at the same time.  We heard they were coming to take Hope just before noon and my heart began to race.  I rode on the stretcher with Hope to the surgical ward.  I cried as I handed her over to Shawn, as he was taking her into the OR.  There was no way to deny reality, Hope was going back into the OR and was having her Glenn.

We worked to keep ourselves distracted and pass the time quickly.  At 4 pm we set up chairs in the hallway that had a view of the entire hall.  At 4:30, I saw Dr. Ross coming down the hall, and I had to look away.  I was too scared to look into his face.  I didn't want to see disappointment or regret.  I looked down until he stood next to us and was ready to tell us about our sweet girl.

Dr. Ross started by saying that Hope did well.  He said that she had truly needed the surgery and it was  a good thing she'd had it.  I didn't feel it was an appropriate time to say, "I told you so!"  Hope's pulmonary artery was much smaller than they had thought.  Hope's blood flow to her lungs was not great and she will do so much better with the new and improved flow.  Her pressures are holding under 20 and appear to be stable.  They were able to easily get her central line in and hope to be able to pull it tomorrow morning.  Central lines are very dangerous for Hope.  If her pressures remain stable through the night, they'll pull it first thing in the morning.  She is still intubated and they hope to pull her tube in the morning as well.  Please pray for stable pressures and easy breaths for Hope.

The anesthetist had a lot of trouble getting an ART line in (a line that measures her blood pressure moment by moment).  The one that is currently in is causing some trouble, so please pray that the line is not lost.  This is going to be a difficult week as Hope adjusts to the new pressures in her body.  It is typical, after the Glenn, to have a headache that will last a few days.  We are praying for a hiccup free recovery, but know that we may face struggles as we work towards getting her home.

Our journey with Hope is long from over.  This surgery is a positive and necessary step and takes Hope to a more stable position in her health.  We still have a third surgery in the future, a clot in the liver that may make that surgery impossible and a lot of feeding issues.  We praise God for making the impossible possible today.  We move forward believing that God will continue to show His power through Hope's life and the hurdles she overcomes.  Thank you for praying with us through today!

Tuesday, 6 November 2012

Trusting God with Hope.

The long awaited Glenn is taking place tomorrow.  I continue to have trouble believing that statement.  Tomorrow is a day that we have been waiting for since the beginning.  It took forever to arrive.  At the same time, I feel like it came out of no where and here we are.  I wouldn't say that I'm completely relaxed, as I do have anxiety about some things tomorrow.  As a whole, I have a lot of peace though.  I'm actually surprised by how peaceful I feel this evening.

Hope is scheduled as the second case for the OR tomorrow.  They are saying she will be taken around noon.  There is obviously a chance that she would be taken earlier, or later.  We will do our best to keep everyone updated as the day progresses tomorrow.  We've spent most of the day snuggling with Hope and enjoying the opportunity to hold her.  We won't be able to hold her after her surgery until she is stable and will be comfortable when picked up.  That is always very difficult for me.

The surgeon, Dr. Ross, came to see us this evening to sign consent for the surgery.  In the average HLHS baby having the Glenn, he has a 95% success rate.  He informed us that he is not able to give us an estimate for success with Hope, as he has no idea how she'll do.  We are praying that all the issues they are worried about, will not be issues.  We are praying that she will not come out of the surgery on life support and will wake up from the anesthetic.  We are praying for her pressures be under 20, that is the goal for her to be more stable.  High pressures is one of the most dangerous aspects of this surgery.  Dr. Ross informed us that anything under 20 would be acceptable.  They believe she is currently at a 7-8 and are aiming for a 13-14 after surgery.

In preparation for surgery, Hope needs to have baths in a special soap.  This removes all germs from her external skin and will lower her risk of infection.  I've just completed the first bath and will begin the second one at bedtime in a few hours.  The third and final bath will take place in the morning.  Hope will stop receiving food and blood thinners at 4am and will be completely ready for surgery by 8am.  This is done as a precaution, as if anything happens with the child that is meant to be first case, Hope would be bumped up and needs to be ready.

They are expecting the surgery to take an average of 4 hours.  I know from Hope's previous surgeries and procedures that my anxiety skyrockets when we reach the projected time of completion, if we have not yet seen the surgeon.  Please pray specifically for us as 4pm approaches, as it is a very difficult time of waiting after that point.

Thank you to everyone that is praying for Hope and our family.  We are continually blessed to hear of people praying for us all.  We know that God is in control and we are trusting Him with Hope.  We believe that He will be with Hope in her surgery and will guide the hands of the surgeons.  May God be glorified through Hope's life tomorrow.

Monday, 5 November 2012

Sitting up...with help

Last night was Hope's last enoxaparin (blood thinner) injection before her surgery.  They have now switched her to a less intense blood thinner to keep her bleeding down in the OR.  That was started this morning through Hope's PICC line.  No other changes were made to her care and I don't have much to update on.

Tomorrow Hope will go through a series of tests to prepare her for the surgery.  She'll have an echo, blood work, ECG and X-ray.  We still have not received a time for Wednesday and likely will not until Tuesday night.  We would appreciate your prayers as patience is tough at the end.  If Hope is taken on Wednesday, we'll do alright.  But the chances of a delay in surgery are very possible.  There are a lot of logistics involved in having an open heart surgery.  If there is not a bed available in the PICU, the surgery will be cancelled.  We are praying that this will not happen and Hope will be taken on time and not delayed for days, or weeks!

I had Hope sitting up in a Bumbo chair today.  She is holding up her head and playing with toys, she's grown so much in the last few months.  It's exciting to see her develop and grow in the midst of so many set backs.

Tomorrow will be a tough day, it will be hard not to think about the surgery.  Please continue to lift up our family in prayer.

Sunday, 4 November 2012

7 Months Old

It's another milestone that deserves to be celebrated.  Hope is now 7 months old and has shown the incredible power of God.  There have been many dark days that are full of bad news and poor outlooks for the future.  We choose to take it all and give it back to God, He is the only one that knows the number of days in Hope's life.

I am thankfully feeling much better and was able to return to my Hope snuggles on Saturday.  It is so hard to be away from her, especially so close to surgery.  It's hard to believe that Hope's surgery is only 3 days away.  We have waited for this day since April 18th (Hope's first surgery) and it took a long time to get here.  It is the day we have looked forward to, and equally dreaded.

Hope is still slowly working up on her feeds, but is only at 16 mls (She needs to get to 34).  We had to stop moving forward this weekend as her tummy had gone back up to 43cm.  She came down a bit this morning to  42.5cm.

Our very sweet friend drove up from Calgary on Saturday to stay with Hope and allowed Shawn and I to have dinner with James (Shawn's brother) and his girlfriend.  Then this morning, we were able to take Sadie to a theme park with some friends while Hope continued to be in very capable hands.  It was such a gift to spend that time with Sadie and with Shawn.  It gave us the boost we needed as we head into this difficult week.  Hope is just happy to have her Mommy back in the hospital with her though!  She is severely attached to me and it's a mutual feeling!

We truly covet your prayers as we head into this week with surgery on Wednesday.  Please pray for Hope's health, that she would not get a cold or infection of any kind.  We are asking the Lord for strength as we endure another difficult stage with Hope and have not had a break to go home (Calgary) for a very long time.  Please pray for Dr. Ross, Hope's surgeon that will be performing this difficult procedure.  They have never operated on a baby here that has Hope's heart condition, and liver problems.  They have no idea how she will do with the complications that are already upon her.  We are praying that she shocks them all and does wonderfully!  Thank you for walking with us through this difficult week.


Thursday, 1 November 2012


Last night as I was falling asleep in Hope's hospital room, I felt as though my throat was scratchy.  This has happened in the past, a drink of water and a good nights sleep takes it all away.  Sadly, I woke up this morning with the same feeling, a bad headache and an all-around yucky feeling.

My mom had to quickly get ready while I avoided Hope as much as possible.  Shawn called his aunt to come pick up Sadie and I left the hospital as soon as possible.  Hope spent the day with Nana and will now spend the night with Shawn.  Shawn will have to get up and return to work, after a terrible sleep.  My mom will be up early to get over to the hospital to send Shawn back to work.  Sadie is sleeping over at Shawn's Aunt and Uncle's house.

I feel completely defeated and honestly, spiritually attacked.  It seems so incredibly unfair to be laying here helpless.  I want to be with Hope during her last week before surgery.  If I can't be there, I'd like to be playing with Sadie.  Everyone is inconvenienced and it's my fault, that feels terrible.

Hope did very well today, her belly is back down to 41.5 and appears to be holding well.  She continues to be happy and comfortable.  I think she was thrilled to be put back on the ward, she loves having someone with her at all times.

Please pray for protection upon Hope.  Please pray that she did not receive any bad germs from me last night.  That my Mom, Shawn or Sadie would not carry any of the germs I'm fighting off as well.  Please pray for me, that I would get over this quickly.  I also need strength to bear the discouragement and frustration I feel.