Tuesday, 30 April 2013

New Beginnings

I am very thankful to say we are back in Calgary!  Hope was transferred around lunch time and was back in the Calgary PICU just after 2pm today.  I made the long drive back with Sadie and Rachelle and went straight to the hospital to see Hope.  We sat with Hope for a couple of hours, but eventually my exhaustion won and we headed home.  I continued to pack boxes and try to get things organized around the house, but by 8pm I was on the couch and dead to the world.  I'm not sure if I've ever felt so tired, I feel like I'm more exhausted than I was after an extremely long labour with Sadie!

I know that my body is physically tired and lacking sleep, but I'm fairly confident that the true exhaustion is emotional.  Last week was extremely overwhelming and very draining.  I wish that I was coming back to a relaxing life, sadly that's not possible with Hope...and a move!  I'm hopeful that if I run myself ragged for the next few days, it will pay off by having some time to relax in the future?  I'm sure it won't work out that way, but I can dream.

Tomorrow morning the transplant team will have their conference and make a final decision regarding Hope.  We are anxious to have answers, but do not feel comforted by being listed for a transplant.  Although it is what we believe she needs, it's not what we wanted for her.  Please pray for Shawn and I as we begin to face that reality that our daughter needs a new heart in order to live.  It's something we believed would happen when she was much older, but not when she was only a year old.

May 1st will mark a day of new beginnings for us, a new house and the wait for a healthy new heart.  Please Lord, would you give us the strength to continue this journey with Hope?  We are weak, but You are strong.  We are tired, but You never tire and will always carry us through.

Monday, 29 April 2013

April Snow Storms

Last night I could not sleep and was up reading until almost 1am.  I finally fell asleep for only 6 hours before Shawn and I were up to be at the hospital on time.  I am exhausted today, but was thankful to have Shawn with me and not to be going through this all alone.

During rounds the doctor said that Hope would likely be listed in the next few days for transplant.  That was the first time we'd heard that things were progressing in that direction.  After rounds we were taken into his office with the head of transplant and a few of the residents.  We had the meeting that we were supposed to have last week, the meeting that had not gone well.  It's a difficult meeting to sit through, even though we are aware of all the risks, it's not easy to hear them listed.

We were told that Hope is an extremely high risk transplant.  The clots she already has in her body raise her risks a lot and her high pressures from her tiny pulmonary arteries will continue to be a problem post transplant.  There is no guarantee that having a whole heart will correct her feeding issues or liver dysfunction.  Hope is already forming calcium in her kidneys from her long term diuretics treatment.  The medications she'll be on post transplant will also damage her kidneys and we can only pray it does not get bad enough to make them shut down.  The medications required post transplant have a high risk for causing cancer and other not so nice things.  There is always the risk of rejection and infection as well. It is not a cure, as I've said before.  It is another step in her treatment, but not a final solution.

Hope will be discussed tomorrow in surgical rounds again.  As long as the surgeons maintain their opinion that surgery is not an option at this point, Hope will be put on the list on Wednesday.  This is not a final decision.  If Hope somehow improves and is able to go home and come off the heart assistance meds, she would be taken off the list in hopes that she could have the Fontan (3rd surgery).  Shawn and I agree that if she is able to have her final surgery, we would prefer that over a transplant and the risks associated with it at this point.

After the meeting with transplant, Shawn and I met with the doctor that does all the VAD's (ventricular assistance devices) for the hospital.  Edmonton has one of the best programs in the world for VAD's (an artificial heart that pumps for your own heart while waiting for a transplant).  He explained that the longer Hope is on the heart assistance drugs, the more it will damage her heart, although currently helping her.  If she has to wait a long time for a heart, there is a chance that she'll need a VAD to stay alive as she waits.  The VAD would need to be attached while she was still healthy enough to handle the surgery so it could happen before you would think she needs it.  Hope's size only allows her to be a candidate for a Berlin Heart.  I'm not even sure how to explain it properly, please google it, you'll be amazed at what they can do these days!

The Berlin Heart comes with another set of risks for Hope.  Blood clots and stroke are a major risk and Hope clots more than the average baby.  We pray we don't end up needing to be on the Berlin Heart.  It would require Hope to be in Edmonton and in hospital until the new heart was found.  The doctors feel that in Hope's current condition, she may be able to live up to a year waiting for a heart.  We were also told that her blood type, A, is more highly matched and it could lower her wait time.  The list is currently long and they have seen patients wait from 2 hours to 2 years on the list.  We need to spread the word about organ and tissue donation.  It is truly the gift that we are waiting for.

After an exhausting and difficult morning, we were told that Calgary was on their way to pick us up and would arrive in 2 hours.  Shortly after, we were told that the flight was grounded due to weather and transport today was cancelled.  The stress of moving, being stuck in Edmonton and the emotional exhaustion of this trip has been almost too much.  They will try to transfer Hope tomorrow morning, please pray that it actually happens!

As long as Hope is relatively stable, we should be able to wait in Calgary until a heart is found for Hope.  They've told us to expect a wait of 6-9 months and the potential that Hope might be in hospital and potentially in PICU through that entire time.  It's difficult for us to think about still being in hospital at Christmas time this year, but it is easily possible.  We appreciate your prayers right now - we sure need them.

Sunday, 28 April 2013

Open Beds

Hope had another good day.  Shawn and I have been told we can sit down with the transplant doctors tomorrow sometime between 9 and 11.  We'd like to have the meeting we were supposed to have last week that turned out poorly.  Hopefully we'll be able to express our thoughts on Hope's current condition and hear their ideas as well.  We will likely still have to wait until Wednesday for a final decision about transplant.

Hope's feeds are being concentrated with a pediatric formula.  She is receiving 85% breast milk and 15% formula and tolerating it beautifully.  It just shows how much of a difference the heart medication makes for her entire body.  Hopefully she will begin to gain weight as she's continued to lose weight for the last few days.  If she's not able to gain weight they'll stop attempting to feed her completely and move her to 100% TPN (liquid IV nutrients).  Please pray that Hope is able to get a little bit chunky on the food that is currently going into her belly.

I don't feel as exhausted as I did before Shawn, Sadie and Rachelle arrived, thankfully.  I am still anxious to get home and back to my bed and a routine I'm more familiar with.  One of the nurses called Calgary today to remind them we were coming back tomorrow and to ask about the bed availability.  Calgary has lots of space and we should be able to return if nothing comes up.  I'm truly hoping we can get home tomorrow as a family.  I'm not sure I can handle another week without Sadie and Shawn, especially as we move.

Tomorrow will hopefully be a busy day of packing up our things here, cleaning the apartment and driving back to Calgary.  Please continue to pray for Hope and our family as we make that long journey once again.

Saturday, 27 April 2013


It always feels amazing to see Sadie and Shawn walking towards the steps of the basement apartment.  This time they even had nursey Rachelle with them for a visit!  I feel so much better when our family is together.  Shawn and I were able to spend the morning at the apartment with Sadie while Rachelle went to reunite with Hope.  I needed the extra sleep this morning and loved being able to see Sadie when she woke up.

Yesterday was Make a Wish day at the hospital.  They had so many incredible things for the kids and I was sad that Sadie didn't arrive until the evening.  I went on her behalf and decorated a cupcake for her, dressed up a dog from Build-a-Bear and got her a little bag of goodies.  She was excited to see all her loot when she arrived and it gave us some toys for her while she's here too!

We got up to the hospital as a family before lunch.  Sadie was so excited to see Hope again and Hope was eager for Shawn to pick her up.  She was whining the entire time Shawn washed his hands and was instantly happy when he picked her up.  It was adorable to watch her face light up at the sight of her Daddy.  We had lunch at the hospital and were even there for transplant rounds this morning.  Dr. Kantor is back on and it was a relief to see him.  Our favourite resident was on call this weekend and said that Hope looked better than she'd ever seen her.  The heart meds are truly working and we are hopeful that they will continue to make such a positive impact on her.

In the afternoon, Rachelle and I took Sadie out to run some errands while Shawn and Hope had a nap at the hospital.  We spent some time there as a family in the afternoon before a volunteer arrived to take over at dinner time.  It's hard to believe today is already over and I'm somewhat thankful that the weekend appears to be going quickly.  I'm looking forward to getting back to Calgary and tomorrow will hopefully be our last full day here.

Thursday, 25 April 2013

Biopsy Results

Exhausted does not even begin to describe how I feel today. I slept fairly well last night and thought I was ok in the morning, but could think of nothing other than a nap by lunch time.  It was another difficult day.  In rounds this morning, the doctors were discussing Hope and what was next.  I mentioned that I wanted to start the process of getting home and was told that we would be here for another week at least!  I voiced the fact that we were moving and that we were brought up here with the understanding that we needed to get home before long and that it would only take a few days.  That did not seem to matter and I was told that Calgary wanted us here until Hope was weaned off her heart medication.  I did not believe that was true and decided to call Calgary Cardiology myself.

I had the cardiologist on call paged and shortly after, our primary cardiologist called me back.  This was extremely kind of him to do as I believe he's still on vacation.  I explained to him what happened yesterday and what I was being told today.  He was not very happy to hear about our experience yesterday and informed me that Calgary did not want Hope weaned off her heart medications.  He promised to look into everything and get back to me as he didn't see why I could not return today.

A few hours later I got a call back from him.  The head of transplant cardiology would like an opportunity to look at Hope himself.  He is away and will return on Monday.  He will also be making the decision, with the team, about Hope's need for a transplant or not.  Our doctor felt that if we stayed in Edmonton until Monday, with the promise that we could come back to Calgary on Monday afternoon, that it would benefit Hope and potentially save us from needing to come back in a few days or weeks.

We have decided to honour their desire to keep Hope here until Monday and compromise on not getting to go home tomorrow, if it means we are guaranteed to go back to Calgary on Monday.  Shawn, nursey Rachelle and Sadie will be coming up to Edmonton tomorrow to spend the weekend here with Hope and me.  I'm hoping that Shawn will be able to remain up here on Monday to meet with the doctor as well, but that will depend on his work schedule so he's not sure yet.  Please pray that everything happens the way it has been planned to.  Please also pray that any further testing that needs to be done could be done in Calgary and that we'll be able to have more consistent care for a while.  The moving back and forth is difficult on our family, but also confusing for the doctors and nurses involved in Hope's care and causes us a great deal of stress.

Late this afternoon I was able to speak with the liver doctor.  He reported that the biopsy results are back and that they look really good.  Hope does have some dilating of some vessels in her liver, but they expect to see this in someone with Hope's condition.  Her liver shows no signs of anything that would prevent her from getting a heart transplant!  It also showed that the liver was much healthier than they thought and she would NOT need a liver transplant as far as they could tell.  It appears the liver continues to improve and although no one can explain it, I give the glory to God.

Although there has been some tension after the inappropriate discussion yesterday, the doctor involved has shared with other doctors that he was wrong and feels badly.  He knows that he has damaged a relationship he had with our family that involved trust and respect and feels badly about that as well.  I do not agree with what happened, but I realize we all make mistakes and I respect the fact that he is humbly admitting his error and feels badly.  As a result, I am choosing to move on and to work hard to have a professional relationship with this doctor as he will be a part of Hope's life regardless.  It will take time to regain that trust and respect, but anger doesn't look very good on me and I feel it's best to get rid of it.  Thank you for praying for reconciliation and for strength as I fight for the care that Hope deserves.

Wednesday, 24 April 2013

Blessings and Burdens

I want to update on the positive side of things first.  I don't want an awesome blessing to be lost by the garbage that happened today.  Hope was taken down to the OR at 4 pm and had her liver biopsy and varices treatment.  She did very well, and came back without oxygen and was stable.  Hope was able to come back to the ICE unit and did not have to go to PICU.  That was a blessing.  Hope's liver biopsy was successful, and we should receive some results in the next few days.  She had to stay on bed rest for 4 hours after the procedure and I wasn't able to hold her.  Being so late in the day, the doctor called up to give me a report as he headed home to his family after finishing with Hope.  Once again, the varices were so small that he did not need to treat them!  Praise the Lord that these varices have been so much better than anyone ever expected them to be.

I talked to another specialist this morning and had a couple more stop by, when I was in the meeting with the transplant team.  That meeting was the worst meeting I've ever had with a doctor.  I've had some pretty awful meetings where we are given horrible news, but I have never felt so angry.  I will say that much of the transplant team is away and this should not represent who they are, as it was just one person being rude and disrespectful.  The cardiologist that attended the meeting is one that Shawn and I grew to respect and value over our time in Edmonton.  I believe that trust is earned and once it is broken, it is extremely hard to repair.  Today I lost a lot of respect and trust for this man.

The doctor came in and asked me how I felt about everything.  I shared Shawn and my concerns that everyone would continue to wonder what to do for Hope for the next few months and that no one would make a decision and we would be stuck in limbo land forever.  He began talking about why transplant might not be good for Hope, and why we needed to consider how Hope felt about having to go through all these surgeries and the fact that she might not want to try anymore.  He basically shared that parents fight for children, but maybe that child no longer wants to fight.  He said that we could move on if we lost Hope and a lot of other rude and inappropriate things.  It was not until the end of the meeting that he informed me that these were all his opinions and in no way reflected the thoughts or decisions of the transplant team as a whole.  It would have been helpful for him to lead with that.  I sat through a meeting that was absolutely taking away all hope of a future for Hope, and fought for her life, her value and her right to receive care.  I did so with the belief that this doctor spoke on behalf of his team.  If he wanted to share his personal opinions, which I could care less about, he could have done that with me privately in a more appropriate setting.  Using a professional medical meeting as a soap box to share your personal opinions, that do not reflect my own, was inappropriate and uncalled for.  It was also completely unfair to me as I was not expecting it and was alone.

The synopsis of the meeting is that we don't have any more information than we did before we arrived. The team is away at a conference and a decision will not be made until next week.  Most of our testing and assessments have been completed and tomorrow I will begin pushing for a transfer back to Calgary.  I would especially like to get back after what happened today.  I'm frustrated with the constant changing of Hope's care and would like to have ONE hospital that cares for her so I'm not told two different things all the time.

Tonight after leaving the hospital, I tried to run around and get some things done while I was alone and did not have the opportunity to spend time with Shawn and Sadie anyway.  After 30 minutes I had a terrible migraine, felt exhausted, overwhelmed and burnt out.  I'm now back at the apartment and planning to head to bed early.  I want to go home.  I want my family around me again and I don't want them to change everything about Hope's care, just to send us back and have it all changed once again.  Please pray that I can return to Calgary tomorrow or on Friday at the latest.  I'm absolutely done.

Tuesday, 23 April 2013

Doctor Jam

Hope's bed was like a traffic jam of doctors today!  I walked in as the team was rounding on Hope and did not have a minute to wake up.  So many changes happen after a transfer and it's almost impossible to keep up.  Hope's TPN (liquid nutrients) were stopped this morning and they're going up on her feeds and attempting to concentrate them once again.  Something Calgary decided recently was not a good idea and had started the TPN as a result.  We'll see what happens.  As soon as the rounds were finished, the stream of doctors began.  Today I met with; Pulmonary, GI, Genetics, Infectious Disease, Neurology, the transplant social worker and the transplant coordinator.  On top of that, Hope had a long echo, ECG and other small tests done.

Hope is now on the on-call list for the OR tomorrow.  If the scheduling works out, she will be taken for a liver biopsy and her Varices treatment.  Please pray that she tolerates the anesthetic well, is extubated easily and able to come back up to ICE and does not need to go to PICU.  I'm never very excited about sending Hope to the OR without Shawn here, but I'm thankful I will not be alone.  Tomorrow afternoon I'll be sitting down with some of the transplant team to get more details about everything going on as well.

This is national awareness week for organ donation and transplantation.  This is good and bad.  It's bad because many of the transplant doctors are away at a conference and we will not get a 100% answer about whether or not Hope is being listed until next Wednesday.  It is good because the number of pediatric hearts donated each year has gone down and awareness needs to improve.  We need people to think about it and to be aware of the gift that organ donation is to the families that are waiting for organs.  Perhaps this very week a family will be touched and consider organ donation, a family that may gift a heart to Hope.

At this point, it looks like once everything is finished with Hope's work up, we'll be sent back to Calgary until we hear what's next.  Shawn was thankfully able to change our theatre tickets, but there was only one other date available, May 14.  That means I have to be home by then!  We'd still like to get back to Calgary as soon as possible, but I won't feel as stressed about it being late Thursday night or Friday now.

I'm exhausted and somewhat happy to be sitting alone in the basement apartment for the night.  I miss Sadie and Shawn, but don't have a lot to give after today and appreciate the alone time to unwind and rejuvenate for tomorrow.  I'm praying Hope will be called to the OR in the morning so we're not waiting on our toes all day.  You never know with these things though.  Thank you for continuing on the journey with us.

Monday, 22 April 2013

Fear of Flying

Have you ever remembered something at the worst possible moment?  Today as the nurses were getting Hope all set up for transport, I had a memory that I had never connected before today.  Over 6 years ago, I was at the gym with my friend Liz when we heard a massive explosion.  Being the nosey people that we are, we began walking towards the commotion.  It was impossible to tell what had caused it as almost nothing remained but smoke and small debris.  We later found out that a medical flight had lost control and in an effort to keep casualties down, the pilot had aimed for a closed BMW dealership.  The plane was completely gone from the explosion and the pilot, a doctor and a nurse lost their lives that day.  Not a memory you want to have when your own child is being strapped into a stretcher that will take her on a medical flight.  It took me to a weird place and yet I felt oddly superstitious about sharing my fear with anyone until I knew Hope was off that plane and safe.  I had a slight distraction when the EMT informed me that she followed the blog and knew all about Hope.  That is always very comforting for me.

I started the drive to Edmonton as soon as Hope was gone.  I stopped quickly for lunch and made it to Edmonton in decent time.  Hope arrived when I was only half way here and was able to spend time with some friends of mine.  There is always a great deal of confusion when Hope is transferred.  So much is missed and there is always a lack of information.  No one had any idea of when Hope needed meds, what meds, what had already been given and all those things.  The Calgary team had told me to NOT let anyone change Hope's feeds, yet they were changed immediately and I was told this was better.  It's difficult to argue unless I'm sure of something.

Hope's medications are not compatible on paper to run through the same PICC line.  They wanted to start an IV but I fought to have the meds stay the way they were.  After 4 days of running them this way, they are clearly compatible enough.  I was extremely angry when shortly after leaving the hospital this evening, they put in an IV.  I called and spoke to the nurse in charge and shared my deep frustration.  There had been some miscommunication among the staff.  There is now a large red note in Hope's file that says I need to be called before any IV's are put in.  I don't want this IV replaced when it fails tomorrow.  It's not fair to Hope, it's not a good long term plan when they don't last and we are damaging her veins for no reason.

Today Hope spent 2 hours having much of her body ultrasounded as part of her transplant work up.  Tomorrow she will have a great deal of tests done as well and will be examined by numerous doctors.  I am anxious in some ways, but I feel like I'm doing alright.  I think I am mostly worried that we will go through all of this, and they will decide she's not sick enough to list her yet.  I disagree, but that won't change anything.  Hope is stable, I would agree with that, but she's not stable enough to have any quality of life or go home.  To me, that means it's time to do something and if surgery is not an option and she won't improve with time, why not list her now?  I pray I'm wrong and this is a meaningless concern, but it's there in my mind.

I had a pretty odd introduction to the transplant doctor, if you could call it an introduction.  He walked over with the transplant cardiologist, that I've met numerous times, Dr. Dyck.  Dr. Dyck spoke to me a bit and checked out Hope.  This other doctor never spoke, stared at me the entire time and never introduced himself.  It was very awkward and will hopefully not be like that every time he comes to see Hope.  I'm going to tell myself that he was deep in thought and hope the next experience I have with him is less uncomfortable.  Thank you to everyone that continues to pray us through this difficult week.

Sunday, 21 April 2013

A Heart that Beats

There are days that I return home and realize that I am completely numb to my environment.  I'll remember passing parents who are pacing in the ICU waiting room.  I'll remember seeing faces covered in tears inside a nearby room.  I'll notice streams of doctors running to a specific child's room with the look of concern they've shown for Hope, on many occasions, across their faces.  I realize at the end of most days that although I saw those things, I didn't feel them like I normally would.  I think you begin to protect yourself, as it's simply too painful to carry a burden for every family in the hospital.  You still feel pain for the families you know, but often hide your heart from those that you do not know.

Today as I stood in the hall speaking with our doctors during rounds, my heart came to life and felt terrible pain for a complete stranger.  A family, covered in sorrow and tears walked out of a room and down a seemingly dark hallway.  Soon after a nurse appeared, carrying their dead child, escorted by a security guard on the way to the morgue.  Today I could not be numb and my heart broke for that child,  and for the family that had lost someone so precious.  Most of all I wondered if that pain would turn the family against God or make them long for His comfort.  I don't know how you go through something so terrible without a belief in God.  Please pray for the family of that child as they finish off a day that they will never forget, yet wish they could.  I often wonder if I'll need some serious counselling one day to remove the ache from all the horrible things I've seen on this journey.

Hope was not transferred today as Edmonton was not ready to take her.  She is scheduled to fly out tomorrow at 10 am and should be able to be in the ICE unit (Intermediate Care Environment) instead of the ICU.  That's much nicer for me as it's a less intense environment, yet still gives Hope the attention she needs.  I'll follow her up in our car, but have friends that will meet her when she arrives and sit with her until I arrive.

I feel badly leaving Sadie in the midst of such chaos in her life.  She's still confused as to why her life is packed in boxes.  I truly hope that this only takes the 3-4 days they suggested and that Hope and I will be able to return by Thursday.  Our sweet Nursey is coming for a visit on Thursday and if I'm still in Edmonton, I'll have to find her a ride to Edmonton.  Also, Shawn knows that I love theatre and for my birthday in December, bought us tickets to a dinner theatre.  The show is on Thursday night and I've been looking forward to this date night for months.  It's again, very minor in comparison to the rest of our lives, but still disappointing.  I would REALLY like to be back on Thursday, with Hope's name on the transplant list.  I haven't gotten what I wanted too often in this journey so I'm trying to keep my expectations low.

This is a big week, it shapes so much of the future ahead for Hope.  We feel the stress of this, on top of a move and being separated as a family.  Would you please pray for our family this week?  Pray for Sadie as she doesn't get to see her Mommy and is already a little confused.  Pray for Shawn as he takes on the roll of single dad and no longer has his helper around to keep things in order.  Pray for me as I sit through a lot of meetings, overloads of information and the emotional roller coaster of the hospital.  Pray for Hope, that her little heart would speak clearly to the doctors and that she'd be able to begin her wait for a new heart, a whole heart.

Saturday, 20 April 2013


I haven't had the time to update in the last couple of days.  We have been working hard to get the house packed up in case Shawn needs to do the move, with me in Edmonton.  The house is probably 85% packed at this point and I feel a lot better knowing we've gotten that done.  We are living with very little in our kitchen and can only cook a limited selection of items.  All of Sadie's favourites are still easy enough to cook; macaroni, grilled cheese, soup and of course waffles!  She's struggling a bit with the packing and will often protect her things from getting put into a box.  I'm fairly sure she doesn't understand what's going on and will be fine once we begin unpacking at the new house.  

I have come to terms with the fact that Hope and I need to go back to Edmonton and have changed my attitude about it.  That's usually the most difficult part, once my attitude adjusts it all feels much easier.  I'm still hoping we are only there for the week and able to return next weekend.  Please join me in praying that things move along in a timely fashion and we're able to get back to Calgary with Hope to wait for a transplant here.  Please continue to pray that she is a candidate for transplant and that God provides a match for her soon.  

Today the hospital said they would likely send Hope on Monday.  That's not what we had hoped for, as they wanted to start her testing Monday morning.  This will delay the process and potentially keep us there a bit longer.  I am thankful that we have some connections in Edmonton and that I'll be able to take a break from the hospital each day.  We are so blessed by our community around us.  I'll have to get the laundry done and our things packed for Edmonton tonight, just in case we go tomorrow.  

Hope is doing very well on her new medications and is starting to gain a bit of the weight she's lost.  She's still not back up to 15 pounds yet, but is surely getting closer each day.  Her smiles have slowly returned and she's more playful once again.  We continue to work at feeding her by mouth and try to celebrate every small step in the right direction.  

Life is crazy at the moment, but crazy actually feels fairly normal to us these days.  Shawn is pretty great at knowing when I'm about to lose my mind and forcing me to stop and rest for a moment.  It slows down my progress, but keeps me sane.  Hope spent today with him at the hospital as Sadie and I worked at packing.  She found some very creative ways to stay busy and got a few good laughs out of me today too.  Thank you to everyone that has been praying us through this transition and also to everyone that has helped out.  

Wednesday, 17 April 2013

Transplant Work up

It was a long day of waiting and very little information.  In the end here is a synopsis...
Hope and I will be heading to Edmonton on Sunday, if a bed is available, or on Monday.  Once there, Hope will have a complete workup to see if she is a candidate for transplant.  It will involve a lot of doctors, meetings and tests.  At this point they've said it will take around 3 days, so it will likely take 5.

If it is decided that Hope is not currently a candidate, it could cause us to be in Edmonton longer.  At that point, they may revisit a liver surgery that was previously rejected.  It looks like we won't have an answer until the end of next week.

Many of you know that we take possession of our new house two weeks from today.  When we made this decision to list our home, Hope was stable and about to return home.  Things have changed quickly and we find ourselves moving in the midst of complete stress and chaos.

Please pray for us as we work hard to pack up as much as we can this weekend.  I am a little on the anal side and not having control during our move will be extremely difficult for me.  We are hopeful that next week's testing will show Hope is able to get a new heart, and we'll be back to Calgary before next weekend.  That would allow me to be here during the move.

The unknowns are very stressful and draining.  This is going to be a long week and I am not thrilled about needing to split up as a family again.  I'll be headed to Edmonton alone and Shawn and Sadie will play it by ear as we get more information and they will decide what to do.

Today Hope was much more stable.  The new medications have made a noticeable difference.  Hope was off oxygen and had stopped grunting for the first time in over two weeks!  Her heart was clearly working too hard and is so much happier with the extra boost from these drugs.  I'll continue to pray that God blesses her with a brand new heart that works the way it should.

Tuesday, 16 April 2013

Fatty Fruit

The Cardiac Conference took place this afternoon and went as we expected it would.  Dr. Ross and the rest of the team in Edmonton agreed with the team in Calgary.  They all feel that a transplant is Hope's best option and if she is able to receive one, would do very well with a new heart.  Tomorrow morning is the Transplant Conference with Edmonton and Calgary.  This is not something that parents are able to attend.  It begins at 7:30am our time and will run for 1-2 hours.  After it is over, our cardiologist will be coming down to PICU to share the results with me.  Please pray for this meeting and that they would all agree that Hope needs a new heart!

We were warned today that we may need to go back up to Edmonton for some further liver testing before Hope is able to be listed.  That would happen very soon and adds a lot of stress as we take possession of our new home in 2 weeks.  Obviously that is so minor in comparison to what is happening with Hope, but I have tried to speed up my packing process and pray I don't leave a lot of work for someone else to finish when we go to Edmonton.  Obviously things change all the time and there is still a small chance that the testing could be done here in Calgary.

Hope has done fairly well with the transition to the new heart medication.  She did not really sleep at all today though, hopefully this wears off and she can get proper sleep again.  She went from never being awake to never sleeping, we need something in the middle!  Tomorrow she will begin taking the viagra and we hope it gives her some ease with her breathing.  The new medication is not compatible with a lot of the meds Hope is on and they had to change so many things.  One of the most major changes was to her diuretics.  If she becomes fluid overloaded, we'll be forced to take her off this new medication and go back to Epinephrine.

Hope was given the wrong dose of medication yesterday as she actually received another patients medication!  Obviously the doctors were not very happy and the hospital is involved to make sure this never happens again.  There have been a few errors lately that are concerning.  We know that we are working with humans and that everyone makes mistakes and we do not hold it against someone personally, we just pray that God protects Hope from anything truly dangerous to her health.

We are stressed this week as we await answers, change and unknowns.  I find the days at the hospital long as I feel like I'm waiting the entire time.  Today Hope was not very happy in my arms so I spent most of the day staring at her and trying to keep myself busy.  I assumed and have now confirmed that through this stressful time I have gained some weight and am never happy about that.  I know that it does not truly matter and is something so minor, but it is really frustrating to feel uncomfortable in your clothes.  I was already struggling to get back into my pre-pregnancy clothes and have found that difficult or impossible.  To find out I have put on some of the weight I worked hard to remove is kind of depressing.  At the same time, I do not have the energy to exercise or the mental health to choose a salad over a comforting grilled cheese.  I am praying that God changes the way things work and that carbs and sugar become good for you and fruits and veggies start making people fat!  It may be a dream but I hope for a lot of things that the world says are not possible!

Monday, 15 April 2013

Viagra for Hope?

Today we were all reminded of how sinful and sad our world truly is.  I mourn for everyone that was killed or injured in Boston and their families.  What a horrible tragedy.  Moments like these remind me to be thankful for everyone in my life and to live each day to the fullest.

Today I had a meeting with the doctors once again.  The specialists all came together to discuss what should be done with Hope.  When they met on Thursday last week, they met under the assumption that Hope would be taking Milrinone (a heart assistance drug) for a week.  She came close to dying after that meeting and it was clear that she was not tolerating Milrinone at all.  The medication was stopped and Epinephrine (also used for her heart) was started.  She has been on it since then and unable to come off of it.  This is not a medication that she can stay on long term and the meeting today was to discuss what should happen next.

They have decided to put Hope on two new medications tomorrow and to stop the Epinephrine.  Please pray for this transition as there is a chance we could have the same reaction as we did on Thursday and it could be extremely dangerous for Hope.  The first medication is a new heart assistance drug that is similar to Milrinone but not the same.  The second medication, surprisingly, is actually Viagra.  It is used to open up her pulmonary arteries and assist in her breathing.  Hope continues to struggle to breathe and is exhausted at all times.  I am hopeful that these medications will make a positive impact.  We have at least another 7 days minimum in Intensive Care.

This afternoon I stood by as Hope screamed having her blood drawn.  She is completely over being poked and only truly awake when something she doesn't like is being done.  I would say that Hope currently sleeps through 21 of 24 hours a day.  They are looking for reasons to explain this complete exhaustion, but it could simply be her heart failing and the energy it takes to breathe.  It is extremely difficult to witness and I feel myself falling apart slowly and clinging to the truth that God loves her more than I do and is crying over her as well.

Tomorrow Hope will be presented (via teleconference) at the Cardiac conference in the afternoon.  As long as Edmonton sticks to their original opinions, that there is nothing more to be done for Hope, we will move forward with transplantation.  There is a slight chance that they will choose to try one more open heart surgery.  This frightens me as it would be extremely dangerous and potentially life threatening for Hope.  I think I'm more fearful that they'll recommend surgery than listing for transplant.

If they decide not to operate, Hope will be presented at Transplant conference on Wednesday morning. As long as there are no surprises, we hope that she will be listed by the end of this week.  Would you join us in praying?  It feels terrible to pray that someone else would lose a child, so please do not do that.  Please pray that WHEN someone loses a child, and sadly it happens in this sinful world, that the parents would have the strength and love to choose organ donation.  Please also pray that soon a child that has sadly gone, would have a heart that is a perfect match for Hope.

It was explained to me that usually a child is able to take a heart from someone 10% below them in weight or double their own weight.  For Hope that would mean the donor would need to be between 4.5-12 kg.  Sadie is just over 12 kgs which means the donor would likely range in age from 4 months to 2.5 years.  I absolutely ache for families that have or will lose a child.  I have been very close and that pain has been more than I can often bear.  I have a strong burden to be praying for the family who's child will hopefully give new life to Hope with a strong and healthy heart.  I would really appreciate others joining me in this.

Thank you to everyone that has reached out and loved on our family this week.  This is not the first difficult week we've had with Hope, but it has not been easy after being so close to discharge.  The talk of Hope coming home soon has completely gone and we now must gear up for another long and exhausting journey.  We believed for a time that we would finally have a chance to rest, but now have to go back into battle, already weary.  We know that we are not alone in this and truly thank God for sending so many people to walk with us through this.  I simply could not imagine doing this without you all and with out God.  To God be the glory for the great things He has done.

Saturday, 13 April 2013

The Family Cold

It looks like we all have a cold.  At this point, Hope doesn't appear to have it.  Sadie has lovingly shared her cold with me and Shawn.  I've been on Advil Cold and Sinus and large doses of Vitamin C and feel not too badly and manage to keep my nose from running like a tap.  Sadie also appears to be improving but is not 100% healthy yet.  Shawn is the strong one, he feels it coming and knows he's in trouble but is fighting it off.  Please pray that these germs do not linger in our family.

Shawn spent the day at the hospital with Hope today, with a mask on.  He felt that she was looking ok although she was very tired.  She slept for 4 hours while he was there and was in his arms for most of the day.  They gave Hope a steroid to try and strengthen her stomach.  She continues on the heart assistance medication and is not able to be weaned off.

I spent the day packing with a friend and made some progress, although the house still appears to be full of stuff!  How we end up with so many things, I will never understand.  If it wasn't snowing, I would consider a garage sale!  I'm hoping to feel well enough tomorrow to go and spend some time with Hope, with a mask on.

Friday, 12 April 2013

No Answers

Hope made it through the night without intubation and did fairly well.  She is still relying on the heart assistance meds and they haven't been able to wean them down.  This is not even the drug they hope to give her for a full 7 days, she was too sick to continue on that trial yesterday.  We may be in PICU for longer than we'd thought.  I could still see that Hope was tired and not feeling like herself completely, but she was MUCH better than yesterday.  Today many of the doctors admitted that they did not expect her to survive yesterday and were much more stressed than they had let on.

In the afternoon, one of the cardiologists that focuses on transplant patients had a meeting with me.  He reviewed all the risks of transplant.  Many people look at it is a cure, but it is truly just another procedure in a long journey with a broken heart.  She may need a new heart to stay alive, but life is not perfect because her heart is whole.  A transplant comes with a lot of highly toxic drugs and the risk of infection, cancer and a weakened immune system.  We are willing to do whatever it takes, but realize this is a risky journey no matter what.

Hope had blood work drawn today that will be worked up as they study her for transplant.  We're not sure how long it will take for her to get on the list.  They need to discuss things further with Edmonton and are not in as much of a rush now that she's more stable.  We'll learn a lot more after transplant conference on Wednesday.  Today it was mentioned that they may attempt to repair her aorta now that transplant is on the table.  Anything is possible so we're trying to stay openminded and just roll with it all.  We would really like a clear plan as the roller coaster is exhausting, but that's not an option at the moment.

Hope continues to lose weight and is under 6 kilos once again.  We worked so hard to get over 5 kilos and it was tough to hear that she was no longer there.  Her legs are tiny sticks and her body needs more fat.  Tomorrow they will attempt to add oil to her feeds.  Hopefully this works and she is able to tolerate it.

Thank you for your continued prayers.

Thursday, 11 April 2013

Coasting to Climbing

Is it not possible to have a small problem with Hope?  Everything is a major issue and never a minor bump when it comes to that little girl.  This morning I did not like the way Hope looked as soon as I saw her.  Her eyes were dark, she would not wake up to interact with me and she was not herself.  I felt like she was hot and kept asking the nurse to re-take her temperature.  Yesterday I had decided that I would still have lunch with two friends as I thought it would be good for me to stay mentally stable and take a break from the PICU.

At 11am the technician came to ultrasound Hope and she was given a sedative, it was the perfect time for me to sneak out while another friend cuddled her.  I was going to be back in 2 hours and would have Shawn with me as the doctors informed us this morning that we needed to have a meeting about Hope's next steps.  On my way out I spoke to the doctors about my concerns and how Hope's heart rate was too high and her eyes were clearly telling me she was sick.

Shawn and I walked in to a bad scene at 1pm.  The number of people standing outside Hope's room was intense.  The very sight of such a crowd outside your child's room is never good.  The doctors spoke to us outside and we never got in to see Hope.  The sedative had pushed Hope over the edge and her heart rate was over 180 bpm and her colour was worse and she was almost unresponsive.  Hope's blood pressure was dropping and they feared they were losing her.  She was given some fluid to try to perk her up and started on a few new meds.  Shawn and I were taken down the hall to meet with the doctors and were asked if we wanted extreme measures taken to save Hope's life.  We still felt that Hope was in God's hands and we wanted them to do everything they could, God would take her if that was his plan anyway.

When we got back into Hope's room, she looked terrible.  She was working really hard to breath and they had decided it might be best to intubate her and give her a rest.  I touched her body and felt again that she was quite hot.  Finally, she spiked a true fever and gave the staff a reason to start her on antibiotics.  These were started as the room was set up for life support.  They had decided that intubating Hope in her condition may push her over the edge and they needed to be ready with ECMO (life support) to keep her alive in order to transfer to Edmonton and hopefully await a new heart.  They were literally standing in the room with all the supplies to start the intubation when Hope started to perk up a bit.  After much discussion, they decided to hold off on intubating for the moment.

They are now thinking that Hope has developed a blood infection, likely caused by a PICC line infection and that the antibiotics running through the line took effect quickly.  Hope is still on heart assistance meds and now heavily relies on them.  She is still in a bad place and could easily go the wrong direction.  Her bed is set up to allow ECMO to be started quickly if needed and she is under very close watch.

The other news of today was from GI.  After carefully reviewing everything they have on Hope, they do not feel that Hope's liver will disqualify her from transplant.  The transplant board will now discuss whether or not Hope is eligible and will decide whether or not a liver biopsy needs to be done to verify.  The liver biopsy can be done here in Calgary.  We should learn more in the next day or two.  In the afternoon they told us that Hope could be listed as early as tomorrow if everything goes through.

I feel very little emotion at the moment.  On Monday I was taking Hope out in the car with me, today we had to tell the doctors that we wanted to save her life at all costs.  Things change quickly and it takes my heart time to catch up with this present reality.  Normal parts of life carry on no matter what happens in the hospital and I find that very confusing.  Tonight we kept an appointment we had at a furniture store to finalize our fabric choice for a new couch.  It seems so silly to think about, but at times the normal things are what keep me going.  I'm fairly sure I haven't even begun to process Hope needing a heart transplant or the fact that her body has begun to shut down so quickly.  We have no idea how long a transplant could take.  Hope is too big to take a heart from a small baby, but too small to take a heart from a child.  She has a small population that would match her size and death is more rare at that age.  I still hate the very idea that another family's pain could be my joy.

I'm tired, yet struggle to sleep.  I'm able to smile, yet numb inside.  I feel hungry, but often feel ill after eating.  I want to be alone, yet crave the company of others.  I am lost in a confusing world of pain, fear and sadness.  Please do not cease praying for our family.  The journey we thought was going to coast for a time, has now begun to climb up hill once again.

Wednesday, 10 April 2013

From Pass to PICU

When I was in labour with Sadie as well as with Hope, I found staring at one object was the most effective way to deal with the pain.  If I closed my eyes I wasn't able to control the pain I felt.  Focusing on a non-moving object seemed to help.  Today I found myself in that place.  Laying in the bed next to Hope, unable to close my eyes or the pain would take over, staring at a specific crack on the wall.

After days of passes and talking about going home, life came crashing down today.  Hope has been on passes, but has truly plateaued.  We are not able to balance her fluids, her electrolytes or her diuretics.  It's frustrating and seemingly endless, I simply assumed we'd find a way eventually.  Yesterday before leaving on our pass Hope had a routine echo done.  Once completed, we went out the door and spent the day outside of the hospital.

This morning Sadie woke up with a cold.  That destroyed my plans of taking her into the hospital to pick up Hope for her pass and I was unsure of what I was going to do.  I didn't know if I should bring Hope home or not.  Eventually Hope would be home and we wouldn't be able to kick Sadie out if she had a cold.  I could not decide what to do.  As I put on our shoes the phone rang.  The hospital was calling to inform me that Hope was not doing too well and would not be able to go on a pass.  I was suddenly stuck with a daughter that needed me at the hospital and a daughter with a cold that could not go with me to the hospital.  I am so tired of being torn between my girls and I was stressed to the max.  After calling Shawn to ask him what I should do, I pulled myself together and started begging all my friends, once again, to help me.  I have used every favour a person can ask for in a lifetime of friendship.  I have a lot to pay back and I have some amazing friends.

Sadie and I went to the hospital and transferred her carseat in the parking lot.  She would spend the morning in one place and the afternoon in another.  I went upstairs and found Hope with laboured breathing, but not looking horrible.  She was extremely grumpy and would cry anytime she wasn't able to see me.  As I sat with her on the bed I could hear the cardiologist speaking to the other doctors.  I knew they were discussing Hope and recognized right away that something was wrong and prepared myself for the devastation.

An amazing cardiologist walked in with a whole gang of people.  She has had to give us bad news on numerous occasions and I trust her, I was glad she was on.  She explained that Hope was stuck.  She wasn't getting strong enough to go home, but was often strong enough for passes.  She shared that in our current position, Hope would likely never get out of the hospital.  She then went on to talk about the echo.  Hope's aorta continues to have high pressure and the right side (only existing side) was showing decreased function.  A meeting was called among the cardiologists this morning to discuss what to do about Hope.  They had decided that Hope's heart was not going to get better, the pressures were causing the fluid in her lungs and surgical repair was not an option and also much too dangerous.  The consensus was that a heart transplant was her best option.

Hope's liver has always stopped her from being a transplant candidate.  They have questioned whether or not her liver was improving lately.  The ascites is now gone and the varices have improved.  The ultrasound shows the clot is still there, but does she have portal hypertension?  (you may need to google some things, too lazy to explain tonight)  If Hope does NOT have portal hypertension, she is a candidate for a transplant.  She will need to have further testing, a liver biopsy or liver catheterization, to rule this out and properly look at the liver.  We're not yet sure if this can be done in Calgary or if she'll be sent to Sick Kids in Toronto for this procedure.

Hope was sent to the PICU this afternoon and started on Milrinone, a heart assistance drug, to kick her heart into gear.  If this week on Milrinone makes a big difference with Hope, we'll know that she needs a new heart.  If Hope does not do well on it, the heart may not be the issue.  If the hypertension is there, we may need to look at whether Hope could receive a liver and heart transplant at the same time.  We are not even sure this is possible, but it is being looked into.

We are functioning, only because we are used to being numb and hit with horrible news without warning.  We are in pain though, this is not what we were expecting and it is painful.  Three weeks from today we take possession of our new house.  We are excited, but it seems so meaningless in light of Hope's condition.  Packing has become more of a pain and less enjoyable, but is a nice distraction at least.  I am completely over having to call Shawn and dump horrible news on him while he's at work.  I can't imagine finishing work after a phone call like that.  I would likely be in a bathroom stall in tears for the rest of the day.

We just told Melanie (Sadie's Nanny), that we likely wouldn't need her full time in May and June.  That has clearly changed and it's frustrating to know that we will continue with that expense.  God has blessed Shawn with a great job that allows me to stay home with our kids.  We never expected to hire a Nanny when I was at home.  Thankfully Melanie is amazing and Sadie is more stable as a result, some expenses are too valuable to remove from our lives.

Please pray for Hope and for our family.  Although we have not yet been listed, I already think of the family that will lose a child in order for Hope to get a new heart.  Somewhere a family lives with a child that they may have no idea they will lose.  That breaks my heart and yet I am already thankful for the difficult choice they will make to donate that child's organs.  My heart is in pieces and once again I am forced to find the strength to carry on.  Thank you God for giving me that strength.

Tuesday, 9 April 2013

Princess Passes

I have been extremely poor with my updating lately.  I'm exhausted.  I find myself sleeping poorly, eating terribly and not being able to keep up with cleaning, grocery shopping or other necessary tasks.  I'm not exactly sure why everything has become overwhelming and poorly cared for.  I'm happy, I don't feel sad or upset about life.  Having Hope out on passes is fantastic, although it can be a great deal of work.  Perhaps knowing that I need to pack up our entire house and move in 3 weeks is making me less motivated to clean.  I'm not sure, but I need to get out of this funk before I get really behind.  Sadie had to go to bed for the first time in her life without milk, I forgot to get it.

Hope's party was fantastic and we were thrilled that our guests donated over $1,000 to Heart Beats!  An amazing organization that practically helps families with children that have CHD's.  The remnants of the party lay around my house in piles and I lack the motivation to put them away.  I keep telling myself I'll do it tomorrow, but that has come and gone.

Today at the hospital the doctors let me know that Hope could go on passes regularly until we get her calorie count up, her fluids balanced and her electrolytes stable.  This could take some time and they want us to have some freedom as we work through it all.  There is talk of an overnight pass this week as well.  It's exciting to be so close to coming home with Hope, but also makes patience more difficult.

Sadie was up all through the night last night and after running a fever at her grandparents house today, I took her to the doctor on my way home from the hospital.  She has a bladder infection and has been started on antibiotics.  She's already been up once tonight as her fever is still lingering.  Thankfully she's not contagious to Hope, a bladder infection is much better than strep throat in this house!  I'm hoping Sadie will feel better after 24 hours on the antibiotic so she'll be less clingy and stop having accidents.  She peed her bed for 3 of the last 4 nights.  I would put her to bed in a pull up, but we ran out and I forget to get more every time I end up in a store.  I've lost a bit of my touch...I need to get it back!

Hope smiled once for me today, something she has been avoiding for a while.  It was great to see her happy, even briefly.  She's quite content and relaxed, but not truly happy very often.  I wonder if the potassium is making her feel a bit yucky and taking away the desire to smile.  It's so refreshing when she smiles and reminds me that she's got a little personality in there.  We're hoping to start back with physio this week.

Hope has been started on puree bacon.  It's pretty gross looking.  Please pray that she will begin eating it to give her more calories.  Who doesn't like bacon?  We also started concentrating Hope's feeds this afternoon.  Please pray that she tolerates the Similac being added to her feeds for extra calories.  This is what we previously added to her feeds successfully when she was much younger.  If this works, we are even closer to home.

Thank you for continuing to pray for our family.  Please pray that Hope would come home soon and that our family would find our groove as we have her home more regularly on passes.  We absolutely hate bringing her back to the hospital, it gets more difficult each time.  Please pray for Sadie as she starts the adjustment of having her sister home more often, she's acting out more through this process.  Please also pray that I could get the rest I need.  I went to bed absolutely exhausted and could not fall asleep.  I'm in desperate need of a good rest and fear I'm going to get sick if I don't catch up on my sleep soon.  Would you also pray that I get my groove back?  I want my house to be organized again.  I need the motivation to pack and the memory to get groceries for my family and to cook too!

Saturday, 6 April 2013

A Party for Hope

Tonight I feel completely exhausted.  I can only imagine how Hope feels!  Today was absolutely wonderful in so many ways and we were blown away by the turn out to Hope's party.  Shawn went to the hospital to pick her up in the morning.  There were some delays with her medication and she was not home until minutes before we needed to arrive at her party.  We quickly changed her into her party outfit, loaded the car and ran out the door.

Pulling up to the church I was feeling stressed but immediately saw the cars of some of my friends and knew that there were many available hands to help with set up.  We managed to get everything set up and ready to go in plenty of time.  We did not pull off today without the help of so many of our wonderful friends.  One friend made 150 cupcakes, another made a cake (that the nurses are currently eating on night shift as we forgot to cut it!  I almost died when I realized we forgot to put the knife out with it and no one had gotten to enjoy it), another picked up supplies all morning, many more helped prepare decorations and other party plans.  Today was truly a group effort and would not have happened without so much support.

Hope was overwhelmed but fairly happy through the party.  We even managed to get a nap out of her in her stroller.  So many people that have prayed for her were finally able to see her in person.  We were blessed by all those that also made donations to Heart Beats as they seek to support families of children with CHD's.  We have personally been blessed by them and know how important their ministry is.

Shawn and I both stood at the back at one point, I asked him if he could believe how many people love Hope.  I looked up to see him fighting back the tears as we were so humbled by the love and support of our community.  There were many tears shed as we looked back at the last 12 months with Hope.  It's hard to believe how much that little girl has been through.  It made me so proud of her and so blessed to be her mom.

Friday, 5 April 2013

Party status

Things have been busy and I haven't had time to truly update. I will after the party for sure! I wanted to confirm the party location so everyone knows where to go. We will be at Centre Street Church (3900-2 St NE)  main campus in the second floor chapel from 1-3pm. Please avoid attending if you or anyone in your home is truly sick. Hope will be there and we need to keep her healthy. We ask anyone who has recently been sick not to get too close to her and to try and keep your small children from touching her hands or face. It's best if no one touches her hands or face to be safe. So many people touching one little girl would be too many germs.  We are so excited to celebrate with you all and want to thank you!!

Thursday, 4 April 2013

Happy 1st Birthday Hope!

This day has finally arrived.  It has not come easily or without pain, but today we celebrate the miracle of Hope.  We praise God today for carrying Hope and our family through this year.  I have yet to see Hope this morning, but I'm already so excited!  

Hope has not thrown up, gagged or retched since the formula was stopped and the breast milk was started.  Clearly her problem is with the formula and not the potassium.  She is a lot happier and is feeling more like herself, although we are still lacking in the smile department.  We were able to get a couple teaspoons of pureed meat into her yesterday and hope she will continue eating it today.  

After the vomiting stopped and the diarrhea decreased, Hope had way more fluid on board and her low dose of diuretics was no longer enough.  Last night the fluid in her lungs must have shifted and her oxygen level plummeted.  She spent some time on 10 litres of oxygen to keep her going!  She was able to get back down to 1 litre and given a larger dose of diuretics to help her get the fluid off of her lungs.  Stopping the vomiting and diarrhea was good, we didn't anticipate how quickly it would happen and the fluid it would leave in her little body.  Hopefully we can balance things out today and get her off oxygen completely!

Sadie and I are heading over to the hospital to pick up Hope for her big day and bring her home.  The hospital has been amazing to work hard to be sure we can have her with us for today.  I'll try to update tonight on her big day!

Tuesday, 2 April 2013

Back to Breast

Hope spent today at the hospital and was not able to leave.  It was such a beautiful day and having both girls at the hospital made it interesting, but we survived.  Hope's magnesium was low once again and she needed an infusion today.  We needed to talk with GI and get some other things done so the doctors felt we should spend the day in hospital.  Hope is also back on oxygen and we don't have home oxygen set up at this point.  We are hoping that the oxygen is just due to extra fluid and she'll be off it soon.  At the same time, she's been grunting when she takes a breath this entire week.  No one seems to know why and I worry it's something more than they realize.

After much discussion, it's been decided to put Hope back on breast milk and to make up the extra calories with pureed meat.  Hope was started on breast milk at 3pm and I'm nervous to arrive tomorrow and hear how she's done.  At 8pm she had not thrown up or retched in the 5 hours since the breast milk started.  Hope is unfortunately still on the potassium and that could easily cause her to continue vomiting.  We need to pray that the diarrhea stops and she won't need the potassium for much longer.

It's almost painful to see how close we are to being home, and yet we still have so far to go.  It's almost easier to pretend it's going to take another 7 months.  In exciting news, one of Hope's heart friends got a heart he's been waiting for since October.  Please pray for Grayson and his family as they walk this difficult road.  Also pray for the donor's family as they mourn the loss of a child.  Each time I see a family get a heart for their dying child, I long for every mother to sign donor cards for their children.  It's a difficult decision to make in the midst of tragedy I imagine, so it's something to think about now.

Holding my breath and praying that breast milk and blended meat is the answer to our feeding problems - let it be so!!

Monday, 1 April 2013

Little Miss Piggy

Hope was granted her 5th day pass in a row!  Sadie was still with Oma and Opa and I was able to have a special day with just Hope outside of the hospital room.  We stopped at Superstore to pick up a few things and specifically to buy some meat for Hope.  She was a very good girl in her stroller just looking around.  I managed to avoid any germy people from coming near her.  It's a weird feeling to take her to such a public place.  Last time she was home in the summer, this was not allowed as she had not had her Glenn surgery.  Now she's allowed to go out into public, but still needs to avoid sick people touching her directly.  Don't we all need to avoid that really??

Hope fell asleep on the way home from the store and slept for the next 3 hours on and off.  I called the hospital as I started to worry about her being so sleepy.  This morning they had found her magnesium level was extremely low and I knew she'd be receiving an infusion of it in the evening.  I wanted to make sure her sleepiness was not dangerous.  I'm wondering if she was just thankful to have a good nap with no distractions.  I am praying she's not coming down with something.  

While Hope slept, I started to sort through old paperwork and purge our home of things we've stored for years with no reason.  This is a task that cannot be done with a two year old home!  Sadie would have been mixing papers, drawing on important things and running through my piles.  I also cooked up and blended our first meat concoction for Hope.  

I had to drive to the chiropractor this afternoon and managed to arrive on time.  Hope started throwing up in the car and I was panicked, but managed to stay calm and get us there.  I cleaned her up and drove us home for the feast.  I plopped Hope in the high chair and prepared for an epic fail.  I touched the spoon of puree meat to her lips and waited.  Hope looked at me like I was crazy and licked her lips. She wasn't crying so I brought the spoon to her mouth and she opened up immediately!  She loved eating and was a natural.  I suddenly realized that I had no idea how much to give her.  She was asking for more so I continued to offer it.  After the 7th or 8th spoonful she began gagging and proceeded to throw up much more than she'd eaten.  

I called the hospital to report about our feeding experience.  The doctor was thrilled to hear that she'd enjoyed eating so much.  He suggested that going forward I allow her to have two bites and then wait at least an hour before offering it again.  Perhaps this will help her keep it down and we can slowly increase these amounts as she tolerates it.  I realize we have a long way to go, but if Hope will take her calories orally, we have no reason to be in the hospital!!

After her meat snack, Hope played with the newly returned Sadie for a bit and then showed that she was ready for another nap.  I put her to bed about 5:30 and we had to wake her up at 7:30 to take her back to the hospital.  She appears more tired than usual to me, but is also quite content when she's awake.  I'm praying this week will continue with passes to come home and improvement in Hope's eating and feed tolerance.  The doctors are talking about upping her feed concentration tomorrow, please pray this goes well and does not increase her vomiting.  

On Thursday, Hope will turn 1!  This is a day that I doubted would arrive on many occasions.  We know that this journey with Hope has included a great number of people.  We would like to celebrate her first year with the people that have prayed and encouraged us through it.  On Saturday, April 6th from 1-3pm we'll be celebrating and dedicating Hope.  We are currently planning to do that at Centre Street Church, Main Campus, in the Chapel on the second floor.  If you would like to attend, please do so!  Just comment on the blog and let us know you're coming if we don't already know.  If Hope takes a turn in her health and we are not able to bring her out, we'll have the party in the hospital.  I'll update on Friday night with an exact location.