Secret Angels

All along we have said that God is using others to deeply bless our family.  Today was no different, but I was very aware of how much we need others once again.

I left for the hospital after running down to the basement to retrieve my jacket I had just washed.  Less than 2 hours later, Melanie called to say the basement was covered in water.  It had been completely dry when I was down there in the morning.  I was not in a position to leave the hospital today as we were having some issues with Hope's breast milk.  The fat was not separating and it was something I needed to stay close to remedy as soon as the milk settled.  We were 5 minutes away from running out of feed when I was finally able to mix more.  Shawn was at work and I felt helpless knowing that so many of our things were sitting in puddles.

Melanie went above and beyond the call of duty.  She put Sadie into a bathing suit and rain boots and began tackling the water.  Shawn talked her through how to turn off the water to avoid any further damage.  We had a lot of boxes, a mattress, rugs, camping gear, Christmas decorations and other things in storage.  The drywall is wet along two walls and we have a lot to reorganize, but we were fortunate.  The damage could have been much worse if Melanie had not found the problem so quickly.  Imagine how bad it would have been if no one had noticed until the evening!

Shawn's dad came over to the house and discovered that the valve on the water heater was broken.  He called a plumber and had it fixed today.  The plumber suggested we replace the entire water heater sometime soon but we've decided to wait it out as it's not very old and we feel like we should be able to get more time out of it.

A friend came over, with her 2 kids, and sorted through some things and helped get the reorganization started.  We are so blessed to have so many amazing people in our lives that drop everything and come to our rescue.

After a trip to the dentist, I ran to Wal-mart to stock up on Rubbermaids to be sure that nothing is on the floor in a cardboard box again.  It's too risky, we could have lost so much more if the things had sat much longer in all that water.  I realized today that Hope has caused me to see that life is bigger than these annoyances.  Yes, it was very inconvenient and not a fun experience, but what did it cost me?  It cost us a few hundred dollars to replace the valve and another hundred on rubbermaids.  In the long run, no one in our family was harmed and life will continue.  Does it really matter if we lose a few of our earthly possessions?

I'm not sure how it's possible after today, but I feel very blessed.  We have incredible support from others, Hope is getting stronger and we have a home...that is currently a bit damp!  This evening I'll have to head back to the hospital to mix more of Hope's feed as she's going to run out at 11pm.  It's a hassle once again, but we're blessed to have donor milk and the opportunity to feed something to Hope!

Thank you to everyone that is carrying us through life right now.  We clearly could not do this alone and appear to be collecting drama!

EATING!!

I feel badly that so many faithful people check our blog and find no updates some days.  I find I go through spurts that I simply can't write every day and not enough is going on to warrant it either.  The last few days have been very mellow and not much has changed.

Today was more exciting with the start of feeds!  Hope is now receiving breast milk from a friend of mine.  She is taking 2 mls an hour to start.  She is currently doing well and we hope to move her up to 5 mls an hour tomorrow if she's ready.  The next two weeks will give us a good idea of how Hope's body tolerates food, and how much longer we'll need to be in the hospital.

Hope sounded very stuffy when I came in this morning.  The doctors decided to do a swab of her nose and send it away for testing.  This is a precaution, in case she caught a cold or virus.  I feel like she just needed some help with booger removal.  I asked the nurse to bring in a better suction tube and we were able to remove a serious amount of boogers.  I'm sure anyone would feel better after an extraction like that!  The stuffy sound has stopped and she appears completely herself to me.  We'll see what tomorrow holds, until then she is on isolation.

Sadie has been sick once again.  She had a low grade fever yesterday morning and I started her on regular Tylenol.  She put herself down for a nap at 2pm and was still sleeping when I got home at 5:30pm.  She threw up at 6:30 and then perked up and was more like herself.  Through the night she was up a few times crying and had a fever of 103.8 at one point.  I continued with the Tylenol and was hoping she'd just snap out of it.  Melanie sent me a message at noon to say that Sadie had put herself to bed once again and was asleep.  This is so out of character for her and I knew something wasn't right.

Sadie has been complaining about being tired for almost 2 weeks.  I began to worry that she had something funny going on in her body.  I had Melanie bring her to the hospital and switch places with me.  I went to Emergency with Sadie while Melanie watched Hope.  Sadie was seen quite quickly and they discovered a throat infection.  The doctor felt that it looked viral and should improve over the next few days with sleep, popsicles and Tylenol.  I pray that he is right and I don't end up back at the hospital with her anytime soon.  She's been sleeping for the last 4 hours and we haven't heard anything from her at this point.  I pray she's on the mend and I'm not torn between my two sick girls again.

They also took blood and urine from Sadie to look for anything that would explain why she is always so tired.  Nothing came back positive and they felt that she would improve with time.  Sadie was very unimpressed with the nurse for taking her blood.  She sat completely still until they poked her, then she was offended!  I have an incredibly horrible nervous reaction.  I laugh sometimes when I feel uncomfortable and am not sure what to do.  I laugh at my kids while they're in pain sometimes and it's so terrible because I worry the nurses will think I actually find it funny, which I most certainly don't.  I do feel a bit uneasy about how tired she is and hope we aren't missing something important.  At the same time, she's 2 and often repeats something that she has said in the past.  Perhaps she was tired 2 weeks ago, and simply decided it was fun to repeat often!

Nursey is feeling better and is back with Hope tonight.  Hope is such a big fan and is happy to have her buddy back.  We always relax more when we feel like Hope is with someone that knows her well and will pick up on anything that doesn't look right.

Please pray for Hope as her body is re-introduced to food.  The fat is being removed from the breast milk and she remains on a fat free diet.  Please pray that she tolerates this well and it's the solution we've been looking for.  We are praying that she will transition well when we introduce fats once again.  Please pray against any sickness in Hope's body and that Sadie will heal quickly and be able to see her sister once again.  She was very upset that she wasn't allowed to go up and see her sister today.  As for Shawn and me, we're just trying to keep on top of everything in our lives.  We are in a fairly good routine, but still find piles of things we hope to get done at some point.  I think everyone has those piles!

Food in Sight

Things appear to be in order for Hope to begin receiving donor breast milk tomorrow.  We are anxious to get her back to feeding, but are worried that the Chyle will come back.  It will be so discouraging if we have to start all over again with pure TPN and need to wait another month to attempt feeding.  Hope will receive the fat-free breast milk for 2 weeks before her regular feeds are introduced slowly and we see how she does.  History with Hope should teach me to not expect an easy road, but for some reason I am truly hopeful this will be a success.

This weekend Shawn and I had the privilege of celebrating our 5 year anniversary.  We had a wonderful evening out together and talked a lot about why we didn't go on more dates.  It is such a gift to spend time with him and I am going to work harder at making sure we have that time more often.  We also talked a lot about the dream vacation we plan to take when our little girl is more stable.  We need a second honeymoon after the year we've had!

Hope continues to be a delight and smiles all the time.  Today she sat on my lap playing with toys and smiling over at her Daddy.  Shawn and I both commented that she is so ready to come home and if we can get her eating, that can be a reality!

Hope's sweet nursey is not feeling very well at the moment.  Would you join us in praying that Rachelle would begin feeling better and get back to her old self quickly.  She is such a huge blessing to our family and Hope really loves her.  We sure miss not having her around all the time and care so much for her.

He Gives and Takes Away

We always hold back excitement.  This does not stem from a lack of faith.  We believe that God is capable of healing Hope completely.  He could put a whole heart in her body as she sleeps this very moment.  We hold back because of experience.  We have learned that getting excited and having that excitement shattered, is very painful.

This morning Hope was taken for her liver ultrasound in the morning.  In the afternoon I was told that it does not appear that anything has changed.  The portal vein is still clotted and there are no obvious signs of improvement.  I guess I'm hoping it was a bad picture and they're not 100% sure, but they never said that.

I feel like we tasted the beauty of Hope's future for a short time, but had it taken away once again.  We will continue to pray that her life will be miraculously spared and that we will have the privilege of watching her grow up.

I feel as though I've been in and out of the hospital for the last two weeks.  When Hope first went into the hospital I postponed everything and assumed I would rebook at a later time.  After 6 months I'm realizing that I need to go to the dentist and all the other doctors in life.  I have been booking appointments that are past due and trying to arrange getting everywhere I need to be.  It's not easy, but it is nice to cross something off my to do list.  I need to learn to live life with a child in the hospital and another one at home.

They were hoping to start Hope on feeds today but with some support from the staff, I convinced them not to.  Tomorrow a friend will be having blood tests done to make her eligible to donate milk to Hope.  In 1-3 days those tests will be back and we'll be able to start feeding Hope once again.  I would rather wait the 1-3 days and give Hope breast milk than start her on a feed I expect to cause problems.  I am deeply hoping this works and we can get out of the hospital!

I believe that God gives to us, but He also takes away.  I pray that He gives us Hope and does not take her away.  At the same time I pray that He takes away fear and doubt in my life and gives me faith and patience.  Some days I come to God asking for so many things.  I wonder if He feels like Santa as I go through my wish list.  Yet, I also have so many things to thank Him for.  God has given us children, something many families dream of.  God has provided for all of our needs; I am not hungry, naked or cold.  Although I have so many days that I beg God for a miracle in Hope, I also thank Him for each day I have with her.

Dangerous Hope

It's difficult to blog on the days that I know the entry is going to be long and difficult to communicate well.  Please be patient as I try my best to bring you all into the meeting and up to date.

There is still some debate on what to do next with Hope's feeds.  One team feels that Hope should have feeds introduced tomorrow.  It would be done slowly and she would remain on TPN until she is able to tolerate full feeds.  They plan to start her on a feed that she did not tolerate last time it was attempted.  Shawn and I have our doubts that this is going to be effective.  If a feed is started and the chylothorax returns, we have to start over again.  Hope will go back on TPN for 4 weeks and after that is completed, we'll try another feed.  Today we were told that if we were being pessimistic, but realistic, Hope could have another 3-4 months in the hospital.  This was difficult to hear and extremely hard to accept.  They plan to begin home TPN training with us, but this will take over 6 weeks and will take time to set up.  It would get us home faster though.

The other opinion is that Hope should be put onto breast milk as she comes off TPN.  Shawn and I feel that this is the better option.  I am out of breast milk and the joint opinion of the staff involved, is that the milk bank would not be an option.  After the breast milk is processed there, it would be missing some of the elements that Hope would need with her Chylothorax.  So, we are exploring the use of some of our friends' breast milk.  This is not an easy answer either and comes with a LOT of red tape.  With Hope's future likely including a heart transplant and breast milk carrying many infections from a mother, anyone that donated would have to be tested for anything dangerous to Hope and this could take weeks to complete.  As a result, it may not help us with our first attempt at introducing feeds.  This is all still being debated and will take time, as it changes every day and is difficult to keep up with.  I guess we'll find out tomorrow which option is going to be attempted first.

Hope will transition to the Complex Care team next week and will be followed by 2 Nurse Practitioners and a Pediatrician that do not change.  This will give her extremely consistent care and will help keep track of all her complexities.  Shawn and I feel strongly that this will make a positive impact in Hope's life.  We are truly thankful for this opportunity and were able to meet one of the NP's today and feel that we'll be in good hands.

Now here is the difficult part.  I feel as though someone has called us and told us that we've won a free cruise.  We've all gotten those calls and you know it's too good to be true.  We have been given some hope for our little Hope and are taking it with a grain of salt.  We know that hope can be a dangerous thing, but are finding it difficult not to be excited.

When Hope's varices were greatly improved in Edmonton, the doctors were surprised.  They did not make a huge deal of this and simply moved forward.  Today we were informed that this is actually a miracle and does not make any sense.  The varices should not have improved with only one treatment, it's just not possible and does not make any sense to them.  The doctors are stunned and have trouble believing this has happened.

When the liver specialist met with me in Calgary, he explained that in very rare cases,  the portal vein can improve.  In less than 1% of people with portal vein hypertension, the body will naturally rebuild the portal vein and the issues will completely resolve without any intervention.  We were told to not let ourselves think about it as it was nearly impossible.  Today, the doctors have suggested that there is a possibility that this is happening.  They are planning to do an ultrasound of Hope's liver to take a look and see what they can see.  It is difficult to get a good look at the liver, and we truly need prayer that this test would be clear and they would be able to see exactly what's happening in the portal vein.  If Hope is in the less than 1% that naturally correct the problem, it is truly a game changer.

If this has happened, Hope is not only a candidate for a heart transplant, but also a candidate for the Fontan.  She would be able to have the Fontan (her 3rd surgery) at age 3-4 as she is supposed to.  If this  is our reality, there is no denying that God has truly done a miracle in her liver.  Something we were told wasn't going to happen, may have happened.  We know that like us, you are all wanting to jump up and down and announce that Hope's liver is cured.  We don't recommend this stance just yet, as we need to confirm that this is really happening as we have no real evidence, other than the vast improvement in her varices.  It would explain, however, why the varices and ascites have improved, but we need to wait and find out if this is true before we go crazy!

Hope's long term plan is not possible to speculate on until we have an answer with the liver.  Please join us in praying for this miracle!  Can you imagine if this was true??  One of our most major issues would be behind us.  The liver surgery in Toronto would no longer be necessary.  Hope's chance at a future would be greatly improved and her next steps would be possible.  This kind of hope is dangerous in our roller coaster journey with Hope but we know, with God, all things are possible!

Please also join us in praying that by some complete miracle, Hope's body would tolerate her feeds.  If she actually tolerated her feeds and the Chyle did not return, Hope could be home in 2 weeks.  Most doctors feel that this is a pipe dream and never going to happen.  Today I'm feeling adventurous and choosing to live on the edge a little.  Can you imagine if we were home with Hope in 2 weeks?  Ahhh, the very thought of it is like a vacation from our current reality.  All we can do is continue to pray and ask for a miracle.  At the same time, we know that God has a plan that is greater than our plan and we will believe He is good no matter what.  Some days we don't understand why, but we believe in a God that loves us and has not promised that life would be all candy and rainbows.  Today, I really Hope God has plans for Hope to return home though!

Genius Convention Take 2

Hope had another good day.  Not much is changing with her care at the moment.  The doctors have decided to finish Hope's TPN schedule on Thursday.  At that point, they are hoping to start introducing breast milk and see how she does.  We are praying that there are no problems and we're able move forward and get this little lady home!

This afternoon I sat with the physiotherapist and worked with Hope.  We are working to have her sit up and develop her core strength.  She has a long way to go and it can be frustrating.  At the same time, I see progress in small areas and feel encouraged.  Some days it's hard to imagine that Hope will grow up and run around with Sadie.

Tomorrow at 1pm Shawn and I will be sitting down with the hematologist, cardiologist x2, pediatrician,   GI doctor, nutritionist and a few others.  They are hoping to video conference in Dr. Kantor from Edmonton, but are skeptical that his schedule will allow this.  We are praying this miracle happens, it would bring a doctor into the meeting that believes our daughter has a future.  This meeting will lay out a care plan for Hope and decide what is next for her.  These meetings can be very overwhelming and at times discouraging.  Please pray for Shawn and I as we prepare to absorb a lot of information all at once.

We are entering a difficult parenting stage with Sadie.  She has always been a very easy going and obedient child, and she is starting to have some interesting moments.  We need wisdom as we work at finding ways to have her obey us and remain patient.  We also need to find a way to get her to eat dinner.  Each night we sit down as a family and it seems to be a non-stop fight to get her to eat and sit with us.  We're both so tired from the stress of Hope that we don't have the energy to deal with Sadie's behaviour.  We want to raise our girls well and worry that our focus on Hope is negatively affecting Sadie.  After a bout of poor behaviour, Sadie will turn around and be the wonderful little girl we've raised for 2.5 years and we wonder how to make that girl stay!

Thank you for continuing to pray for our family.  I am still adjusting to being back in Calgary.  There are moments in the day with Hope that I stop and think, I get to go home when I leave here today!  It's always wonderful to end my day with Shawn and Sadie and to know that I'll be seeing Hope in the morning too.  I try not to focus on getting Hope home constantly, it makes it difficult when things are delayed.  On the other hand, it's such an incredible thought and a dream that sneaks into my mind often.

Memories and Toddler Moments

On Saturday we went over to the hospital as a family.  Sadie did well for hours but eventually needed a break from the hospital.  Sadie and I made a run to Superstore and Dollarama to get her out for a bit.  We were not able to find something we'd been looking for and decided to head over to London Drugs.  I never thought anything of it until I walked into the mall holding Sadie's hand.  The last time I had been in that mall was on November 16, 2011.  I had walked in with Sadie and Shawn to have an ultrasound and find out if our little baby was a girl or a boy.  We walked out heart broken and crushed, our baby girl had a heart that was broken.  The emotions flooded back as I walked through the mall and I was in awe of how much more we'd been through than I ever imagined possible.  I cannot help but give glory to God.  This is not possible without the Lord as no one is strong enough to take so much.

We headed back to the hospital after dropping off our groceries and spent the rest of the day at the hospital as a family.  It's amazing to be together as a family, I just wish it could be in our own home.  I hold onto the hope that it will happen sometime soon.  

This morning the plan was the same, to head to the hospital as a family.  I have no idea what happened to Sadie through the night, but she woke up a little naughty.  She kept insisting that she had to pee and wanted to sit on the toilet forever.  We needed to leave and eventually had to pin her down and dress her.  She proceeded to pee her pants as soon as we had her coat and shoes on.  It was not a relaxing or enjoyable start to 'Family Day'.

Once we arrived at the hospital Sadie was more herself and the rest of the day went well.  The doctors came to speak to us about Hope.  It sounds like the meeting with all the important doctors should be happening on Wednesday or Thursday.  They drew blood this afternoon, that has to be done peripherally and cannot be taken from her line.  We asked for the nurses from ICU to come up and draw it from her head.  This is often a better place to draw from Hope and can be done with one poke.  They agreed and the blood was drawn with one poke.

It sounds like Hope will finish her round of pure TPN later this week.  Once that is finished, they plan to start giving Hope breast milk from the milk bank here in Calgary.  It will be spun and all the fat will be removed from it initially as her body is still not able to have any fat.  This is because of the Chylothorax in her lungs.  Hopefully this is successful and we have Hope eating right away and are able to get her home!

In the late afternoon we got some results from the blood work.  Hope's platelets have been very low for a long time.  Today they came back perfect and her electrolytes are perfect as well!  It appears her body is much happier at the moment and she is doing well.  She has lost some weight since returning to Calgary and is at her weight from July.  We worry that she'll continue to lose once on breast milk and hope that she'll be able to get back on higher fat feeds quickly.  She's been 11 pounds for so long, I feel like we'll need to have a party when she hits 12 pounds!

Another week begins tomorrow, I always hate when Shawn has to go back to work and I have to be alone at the hospital.  I just want my girls at home so we can greet Shawn when he gets in from work each day.  Please continue to pray that this happens soon!

Policy Fail

Yesterday was very stressful and I chose not to blog, as I knew I would say things in frustration that I would regret.  As I was getting ready to leave the house I got a text that said, "They are taking Hope to the OR now."  I was obviously very confused and not comfortable with Hope being taken to the OR without Shawn or me there.  It turns out that the day before they had only adjusted Hope's PICC line and had not rethreaded it.  They were now going to take Hope into the OR to rethread her PICC.  They had failed to communicate this and we had not signed consent.  After numerous phone calls back and forth with the hospital, they agreed to take Hope without giving her any anesthetic.  They rethreaded her PICC line and everything went well.

Once at the hospital the doctors repeatedly apologized for failing to communicate that Hope was going into the OR.  While I had their attention, I decided to talk with them about Hope's bloodwork.  Since being back in Calgary, all of Hope's bloodwork has been taken peripherally and not from her PICC line.  Some days that means Hope is poked 3 times!  This is simply not okay with Shawn and me.  It's not that we don't want her to go through the pain, although we don't, but they damage her veins each time they access them.  In November when Hope had her bleed, they were not able to get an IV because her veins were so damaged from all the bloodwork.  After resting the veins for a few weeks, they began to improve.

I made it cleared that Hope's regularly scheduled bloodwork needed to be drawn from the line twice a week.  I was told this was not possible, as it is against hospital policy and will never be allowed.  To make a long argument short, if you refuse to allow them to do anything else, they will break hospital policy.  Everything they insisted up and down that they would never allow, is now what will be done.  I don't understand why a parent has to fight so hard to protect their child.  This is something that we should be discussing in order to protect Hope, not fighting about.

In frustration with me, the doctors were rude and hurtful.  When I shared that we wanted to get Hope home as quickly as possible in order for her to grow and have her next surgery, the doctor said Hope wouldn't be able to have it.  Once again I was met with negative attitudes about Hope's future and her potential to survive.  I am absolutely over the opposing information we receive.  One day Hope has a chance and a future, the next day her future is not possible and she's days away from death. I need the doctors to decide and stop taking us on this roller coaster.

The doctors are now planning a meeting for next week with all the important players to decide what is next for Hope.  We will make an official plan and be able to move forward with a plan that everyone has agreed to and can be held accountable for as well.  We are praying that this meeting is what we've been missing and will help us make some progress.  Hope is also being put under a complex care team, this allows her to have a consistent pediatrician so that her care is not passed from one doctor to another each week.  We are praying that this doctor will believe in Hope's life and will fight alongside us to give her a future.  We know that Hope's future is in God's hands.  We do pray that while she's with us on earth, that he provides fantastic doctors to care for her and make her life as wonderful as possible.

Today I am in deep need of encouragement and hope.  Yesterday left me broken and completely exhausted in this journey.  I drove home from the hospital completely broken and in tears.  Today I am going back to the hospital with hope of a better day.  Mostly because it's the weekend and no one will come to make major changes on a weekend.  This will allow me to cuddle with Hope and enjoy my time with her.  Her life is in God's hands, I want to cherish each day that God allows me to hold her in my own.

Heart Day

In true romantic fashion, my husband thanked me at dinner for reminding him that our anniversary is next week.  He had forgotten.  We enjoyed pizza from a box and the Survivor episode that we taped last night.  Romance is a fine art that we have mastered.  I do believe that true love does not require Valentines Day.  A man will always score more points by bringing home flowers or writing a nice note on a random day through the year that is unprovoked.  Perhaps Shawn is too smart to follow the crowd!  Whatever the reason, there is just something about him that I love unconditionally.

Today they discovered that Hope's PICC line was facing the wrong direction and was dangerous to run TPN through.  They decided to attempt re-wiring the line without pulling it.  It appears this was successful and a major dilemma was adverted.  Thank you God for sparing us from the drama that would have come with that one!

I spoke with the cardiologist today about the home TPN program.  She was open to my desire to get Hope home quickly and has begun looking into it for me.  It doesn't sound like Calgary plans to keep Hope on TPN as long as Edmonton had.  If Hope does well when she comes off it, we could sneak home before the end of the month.  I won't hold my breath at this point.

I got in a couple of hours with Hope before passing the torch to her Oma.  I am still not feeling that great but don't seem to be getting any worse.  I'm not sure if my body just hit a wall and is refusing to feel normal until I truly rest or if I'm actually fighting something.  I am simply exhausted, randomly nauseous and have recurring headaches.  I know what you're thinking, but I took 3 pregnancy test and all of them are negative.  phew!  My neck is extremely out so I made a trip to the chiropractor today and have a massage booked for tomorrow morning to see if getting that pain to go away will help.  Please pray this resolves and I get my energy back.  My fridge is still full of yucky food!

Hope continues to be all smiles and is happy to be back in Calgary.  I feel like I won the lottery getting to come home.  I absolutely feel more sane when I have my family with me.  Hopefully Sadie will be able to come and see her little sister tomorrow.  Hope adores Sadie and is often full of smiles for her.  Happy Valentines Day!

Comforts of Home

Yesterday I left the hospital before lunch and spent the afternoon in bed.  By the evening I felt horrible and knew the morning was going to be rough as well.  A friend agreed to meet Hope in the morning at the hospital and sit with her.  I managed to get some sleep, but was still feeling pretty terrible in the morning.

At 9am the hospital called with glorious news, Calgary was sending a patient to Edmonton and Hope would take their place in Calgary.  I was thrilled, we were finally going back to Calgary and I would be able to see more of Sadie and Shawn.  Then the dread of driving home washed over me, I wasn't sure I'd be able to sit up for that long.  Thankfully as our friend sat with Hope, he also found a kind soul to drive our car back to Calgary and bus back to Edmonton.  Someone had offered to do this on Tuesday, but today was a much busier day for them and I didn't want to use them unless absolutely necessary.  I was thrilled to be heading home.

I managed to pack everything up at the apartment and load the car.  It is such a blessing to have a place to stay in Edmonton, but always wonderful to leave as well!  I had to go over to the hospital to pack up Hope's things there and sign for Hope's transport.  I wore a mask and washed my hands with some extra effort.  Hope started to cry when I wasn't holding her and was clearly angry that I'd been gone for 24 hours and was now standing close to her, but not close enough.  I picked her up and had some wonderful cuddles before the team arrived.

The transport was delayed when the ground crew was worried that the air crew had different pumps for Hope's meds.  They drove back to the airport to pick up the air crew and bring them to the hospital to transfer Hope themselves.  She was fashionably late for her departure, but departed.

I made the drive in the passenger seat with my head back and having a wonderful chat with a really sweet woman.  I was so happy to get into my house and will be thrilled to unpack and organize everything when I have the energy.  Shawn needs me and this is very obvious when I've been gone.  The fridge is completely unorganized and full of food that needs to be thrown out.  The freezer looks like it is just as bad.  The kitchen counter is piled with mail and Hope's crib is full of everything I've sent back from Edmonton over the last month.  I will be in my glory when I can finally organize and put everything in its place.  I noticed that Hope's drawers are still full of her 6 month clothes, she has transitioned into her 9 month sleepers and I've never moved the clothes out of storage from Sadie.

I am currently laying in my bed and absolutely thrilled to be here.  Hope is in the comfort of her home care nurse's arms.  Rachelle is with Hope so often, and Hope is completely comfortable with her and will be so happy to have her there.  We are back in our old room at the hospital here in Calgary and all her favourite nurses have stopped by to say hello I've heard.  I'm truly hoping to wake up feeling fabulous and be able to get over there.

Thank you to everyone that has prayed us home.  I am one step closer to getting Hope into this house.  She still needs to do weeks of TPN and then establish her feeds.  I know that Edmonton has a home TPN program and I'm going to push and see if Calgary will allow Hope to come home on TPN.  I have my doubts, but might as well try.  I'm dying to have her here at the house with us.  Until then, I will celebrate the fact that we're in Calgary once again.

Sleepless

Tonight I continue to struggle with an issue that I've had for the last few weeks.  I am completely exhausted, yet unable to sleep.  I have experienced a slight version of this during my pregnancies, but have never had sleepless nights otherwise.

Today I made the difficult decision to leave Hope alone (with a nurse in the room) for over an hour.  I battled the idea of her being alone and worried that she'd cry and no one would comfort her.  At least not as quickly as I would have.  I found out at 11:30 that Calgary was not able to find a bed for Hope and we would be here another day.  I spent much of the day in bed with Hope and snuggling in a chair.  Just after 3:00 I suddenly felt overcome with exhaustion and my body was aching.  I worried I may be sick and made the decision to protect Hope by leaving her alone.

I came back to the apartment and crawled into bed.  I lay in bed for a couple of hours but could not fall asleep.  I ended up on the couch watching tv all night.  I crawled into bed exhausted, but after over an hour of trying to fall asleep, I'm still awake.  When I do fall asleep, my body is naturally waking me up really early.  I'm much too tired to be waking up as though I've had enough sleep.  I'm not sure why this is happening, but I am absolutely exhausted and truly worried that if I don't get a good sleep, I'm going to get sick.

I am hopeful that Calgary is able to take Hope tomorrow.  I need to get back to sleeping in my own bed, spending time with Sadie and having Shawn around daily.  If I'm not sleeping in the next week or two, I may need to go to the doctor for some help.  I simply cannot function on such little sleep for much longer.  Please pray that the patients in Calgary would get healthy and go home so we can have their bed!!

This morning in rounds the Cardiologist said that Hope needs to be on TPN for 4 weeks before her feeds are re-introduced.  This is terrible news for me, Hope has only been on pure TPN for 1 week.  That means we have another 3 weeks of TPN and then the time that it takes to establish full feeds before we can go home.  My dream of making it home in February is shattered and March seems optimistic.  I do not want to spend Hope's 1st birthday in the hospital and I'm tired of not being there for Sadie.  I need Hope to do extremely well on the TPN and for the doctors to change their minds.  I am praying that she will shock them all and be back on full feeds before they expect.  I'm not sure I have another month in me, I'm tired and I just really want a break from this life in the hospital.

Lord, please give me the strength I need to walk into the hospital tomorrow with hardly any rest tonight.  Give me the strength to be there for my helpless little girl who needs to be loved.  Please get me home to the rest of my family so I do not have to do this alone.  

A Show Home

Although we promised not to be in this position, here we are.  Shawn left after an early dinner and is headed back to Calgary with Sadie.  The doctors continue to assure us that Hope will be transferred tomorrow and we don't want to take Shawn away from work unless we have to.  Needless to say, I will be extremely disappointed if this falls through.

Shawn's dad was not feeling well today and has ended up in hospital in Calgary.  Shawn wanted to be closer to his family during this time as well.  I realize that I am his family as well, but I would feel the same way in his position.  Please pray for Shawn's dad as the doctors work to figure out what's going on.  Sadie absolutely loves spending time with her Oma and Opa.  We pray that God keeps them strong and able forever, but we realize life is short and cherish the memories Sadie makes with them and pray that Hope is able to do the same.  Sadie spent the entire weekend asking where my mom was and if we could go visit her and grandpa.  Kids sure do love their grandparents and are blessed to have them.

We continue to struggle with Hope's potassium levels and cannot seem to correct it without over or under correcting.  Hope had a blood transfusion yesterday that appears to have perked her up a bit more.  She is still smiling daily and melting our hearts with her adorable grins.  It is a relief to see joy on her face, it's the first thing to go when she's not doing well.  Her chest tube survived another day, but is draining hardly anything and is likely out of position.

Please join us in praying that Hope would be able to find a bed in Calgary and that she will be transferred tomorrow.  We are also a bit anxious about the transfer.  Hope has been in ICE for a month now, but there is no ICE in Calgary.  It will be fairly extreme to move her to a ward with a nurse that is covering 3 patients.  We are hoping they will move her to PICU until her potassium is resolved, or into the area of the ward that has 1 nurse for every 2 patients.

I am currently living in transition mode.  I have to be ready to go at any minute, but realistic about the fact that it could take awhile.  I feel like my house is for sale and I have to have it in show ready condition.  I have cleaned the kitchen, bathroom and bedrooms.  I have the laundry mostly finished and the fridge and freezer organized.  I hope to make minimal impact in the morning as I leave, and simply come back to collect my stuff as soon as Hope is transferred.  In all reality, I may be coming back and staying another few days.  As a result, I have to have things all packed up, but not completely packed.  It's terrible really, it would be best to have an exact departure date and time.

Although I strongly dislike living in Edmonton, I must admit that there are some good things about this city.  I obviously appreciate the children's hospital here, but I have been blown away by the kindness of people here.  So many wonderful people have come to cuddle with Hope as we head out in the evenings to eat and rest before another long day.  Many complete strangers have provided incredible meals for me and my family.  What a blessing it is to come home after a long day and sit down to a wonderful dinner that only requires reheating.  Community is so important, often we fail to realize this until we truly need it.  Thank you for being such a blessing Edmonton, although I really hope to leave your city tomorrow!

Monday??

Yesterday was a nice day with Hope.  It was just the two of us all day and it went quite quickly.  She had drained 40 mls from her chest tube the previous day, but drained over 40 mls in the 10 hours I was at the hospital yesterday.  Drainage has certainly increased and they worry this is a result of stopping one of her medications.  They are thinking of putting her back on it, but it's not a medication she can be on long term.

Shawn and Sadie arrived last night, it was such a gift to have them here for dinner and then to put Sadie to bed together.  She is an absolute delight and each time she visits I wonder how I survived 5 days without her.  She's growing so much and I feel like I'm missing out on her life.  Sadie's Nanny, Melanie, has been working hard to potty train her.  She's clearly done an amazing job as Sadie rode the entire way up to Edmonton and ran to the bathroom when they arrived.  She was dry after her sleep last night and simply told me when she needed to go this morning.  I'm impressed with Melanie's skills!

At 4:30am the hospital called to say that Hope was quite 'wet' (fluid overloaded) and would need to restart her diuretics.  It's too bad they woke me up to say this, I've been asking them to give them to her for 2 days and was thrilled to hear she'd finally get them.  They are hoping to give her a blood transfusion either today or tomorrow as well.  Hopefully this gets her hemoglobin back up and makes her feel even better.  She continues to smile more and had some incredible naps with me yesterday.  In the afternoon she slept for 2.5 hours straight!  I kept trying to get her up but she'd just grunt and go back to sleep.  Maybe she'll finally grow.

This morning I had the gift of waking up with Sadie as Shawn was at the hospital.  She walked over to the bed and climbed in beside me.  Then she clearly said, "Mommy, when will Hope be all better?"  What a tough question to wake up to and how was I supposed to answer?  I simply told Sadie that we were praying that Hope would be better soon and home with our family.

Today we plan to spend the day as a family at the hospital with Hope.  Sadie loves the toys in the play area and the attention from the nurses too.  I look forward to the weekends all week long and hope the day doesn't go too quickly.  They are still talking about transferring Hope on Monday, I pray that this time it actually happens.

A Solo Act

Solo is a bit misleading when I'm talking about my life with Hope.  I am in no way doing this alone.  I have the Lord of course, and an army of prayer warriors!  On top of that, I have volunteers cuddling with Hope in the evenings when I head out to rejuvenate and I have wonderful people that have made meals to keep me well fed.  I am not doing this alone and I feel extremely blessed.

Today was a fairly low key day with Hope.  She was very happy and I believe I got 5 smiles throughout the day!  It is so nice to see her smiling again, it has been a long wait.  I hope she continues to improve and is smiling more regularly for me.  She was not up a great deal in weight, but looked fluid overloaded to me.  The doctors are discussing starting her diuretics once again and I think this is a good idea.  Her X-ray didn't look too bad, but is still showing some fluid on the lungs.  Her chest tube is getting closer to falling out of position and may need to be removed tomorrow.  I've been told that for 3 days, so I believe God is holding that little tube in there!  Hope's drainage was down again today and appears to be improving, for that we are thankful!

They have finally heard from Boston!!  Sadly they just said that Hope is so complex and they want more of the experts to weigh in.  They want the liver specialists involved in the discussion as well.  This is good news as it gives us a well thought out opinion, but bad news as we must continue to wait!  They suggested it would take them a few more days, that means a week when you hear a doctor say that.  I have learned that 15 minutes is really an hour and tomorrow means 3 days from now.  We still have no word from Toronto.

During rounds the Cardiologist asked what I wanted to do.  I told him that we were ready to get back to Calgary and would rather go back and have to return, instead of waiting in Edmonton.  They agreed that this was a fair decision, especially since we don't know how long it will take to get a response from both centres.  They have made some changes to Hope's medications and want to wait and see how she responds.  If she does well and her drainage continues to be low, they will look at transferring her this weekend.  That means next week in doctor talk though!  I'm going to expect Tuesday and be satisfied with Wednesday.  This puts us back in that awkward position of trying to decide what to do with Shawn and Sadie moving here.  We have decided that if things look promising for us to head home while they're here on the weekend, they'll return to Calgary on Sunday night.  I will be disappointed if I don't get back to them and they have to return the following weekend.

I feel like I did fairly well on my "own" with Hope today.  I certainly missed my mom and her company, but enjoyed the day with Hope.  I have started something terrible with her, I crawl into the crib to help her fall asleep at nap time.  It works wonderfully, but is going to haunt me when I get home with her one day.  I am not crawling in the crib at home, and won't have the luxury of napping with her when Sadie is there too.  I guess I feel sorry for Hope and feel like she should have whatever she wants to be happy.  One day I'll have to stop that mentality, but for now I think it works!

Missing Rounds

Every cardiologist has their own style.  Yesterday, the attending cardiologist started rounds at 10:30 am.  This morning we got stuck at the train tracks and were 15 minutes late, and they must have started right at 8:00 am this morning.  We walked in right after they finished with Hope.   I seriously hate missing rounds.  The doctor did come by later, however, to give me a synopsis of what was discussed, so that was great.

Hope's potassium was back up and dangerously high once again.  They have stopped giving her any potassium, realizing this will likely make it too low.  At that point they feel it will be easier to bring it up and make her heart more stable.  She has been having irregular heart rhythms through much of today.  Her chest tube held on today and is still working as far as they can tell.  Her weight was up a lot, a sign of fluid retention.  Tomorrow they will do an X-ray and make sure her lungs are not full of fluid again.

No news on the surgery or return to Calgary.  Hopefully we'll get some information by tomorrow as we need to decide if we want to keep our Nanny for March and April.  Please pray that we get some clarity in the next 48 hours that allows us to make the best decision possible.  

Today Lincoln's mom, Sharla, came up from Calgary to visit.  It was so good to see her and the kids and felt completely normal to have her in Edmonton.  I miss my friends, I'm really looking forward to getting home to Calgary.  More than that, I really want to get back to a place in life where I can have friendships and actually pour into others.  I'm continuing to pray that God will get us back in our house as a family soon.

I Hate Clots, I Really Do.

This morning Hope was back to her old habits.  She was completely happy until she noticed that I had entered the room.  Suddenly life was horrible and she pretended to be miserable until I picked her up.  Then life returned to normal and she settled right down.  I was having an amazing snuggle with her when a technician came in to do an ECG and I had to put Hope back in her bed.

Last night Hope's potassium spiked to a dangerous level.  It was 3 times higher than it should have been and could be deadly.  Thankfully the staff jumped on it right away and were working at getting it down.  Hope's heart rate was incredibly low, but started to climb up a bit as the day wore on.  We can't seem to find the right place for all of Hope's electrolytes.  They have been too low or too high for over a week now. We are hoping that, with the diarrhea improving, Hope's body will get back into a normal routine.

Over the weekend I noticed that Hope's right hand was much pinker than the left.  This was a change and with the PICC line in that arm, it concerned me.  I pointed it out to a few doctors and they decided to do an ultrasound this afternoon to make sure everything was okay.  Unfortunately, it was not okay.  Hope has a clot in her right arm.  Thankfully, it is still quite low and has not reached her shoulder.  With the line still in, there is a high risk that the clot will grow and could run into the neck.  This is the exact area I have mentioned before.  If this area clots, there is nothing more they can do, it will surely take Hope's life.  Normally the line would be pulled to avoid this happening, but we don't have that option as it's also the line keeping her alive.  This is the site that her TPN is running through and, until we begin feeding her again, this is vital to her survival as well.  Once again, we are stuck between a rock and a hard place.  Please join us in praying that this clot will not move a millimetre!

Now for some good news...  Hope's left lung has slowed down a lot in its drainage! They are considering pulling the chest tube tomorrow as they feel the fluid may be at a low enough volume.  If this is true, we would stay on TPN for the rest of the week at least, but should be able to start feeding Hope at some point next week.

If Boston and Toronto come back with an answer this week, and say not to operate, we may be Calgary bound!  With the chest tube out and the Chylothorax under control, we should be able to return to the Calgary Children's Hospital.  We will continue to await their decision and hope that we will be heading South soon.

Thank you to everyone that continues to pray for our family and especially Hope.  She is full of complications, constantly doing things they have never seen before and is often thought not to survive.  Yet I believe in a God that is able to do miraculous things.  I believe that He is capable of saving her and am humbled by those that have chosen to believe and pray alongside us.

Cheap T-shirt

I feel like a cheap t-shirt.  You know the one you saw on sale at a store you never shop in, but this time you decided to give it a shot.  After wearing it for 2 hours you find the first hole, and after one wash the t-shirt is only useful as a rag.  I am a cheap t-shirt right now, I'm extremely thin and too much more of this is going to cause me to tear.  Once again I had to say goodbye to Sadie for the week.  Snuggling with my daughter while she repeats, "I don't want to go, I just want to stay with you", is an absolute torture.  Shawn and I have decided that going into our 4th week living apart, that this will be our last.  If Hope and I are not home by Friday, he and Sadie will be moving up to Edmonton until we can return as a family.  It's just too hard to only be together as a family for 2 short days a week.

Hope's left lung continues to drain large amounts of fluid.  She is over 1500 mls already.  The medications we tried have not been enough.  Hope stopped receiving her feeds an hour ago.  After working so hard to get her eating again, we are going to have to start over.  Hope will receive only TPN (liquid nutrients) for at least 7-14 days, depending on how long it takes to get her left lung to dry up.  Please pray that it happens quickly and we can get her eating again.  After having that food in her stomach, she is going to feel hungry and will surely wonder why we are starving her once again.

Hope did very well last night and had a decent day today.  She was awake often and yet was able to have some good naps as well.  Her platelet levels are really low, so they are looking into this and wonder if she has a new clot somewhere.  This would be so discouraging, as we have more than enough clots already.  If she doesn't get her levels up soon, they'll have to give her some platelets to get her back up to a safe level.  She also continues to have 50% of the chest tube drainage replaced with albumin.  Albumin is taken from human blood and we are using a lot of it every day.  Please consider donating blood if you are not already doing so.  Blood donors are keeping kids like Hope alive.

I had the blessing of holding Hope for a little bit longer today.  She still got uncomfortable quite quickly and wanted to be put down.  The time I did have her in my arms, was absolutely wonderful and I cherish those moments.  I always struggle when Sadie is only here for two days.  I don't want Hope to feel like I'm not around and to be looking for me all weekend.  Yet, I want to spend my time with Sadie as well.  I'm not very good at playing with toys and running around.  I'm the type of mom that wants to read books, watch movies or take you out on an adventure.  I have a really difficult time keeping Sadie entertained at the hospital.  So if I want to have some intentional time with Sadie, I have to leave Hope. It's a position that no parent should be in for such a long period of time.  It's been 6 months already (not counting the first 2 months of her life in hospital).   Hope will have her 10 month birthday in the same room she celebrated her 6 month birthday.

I am praying that next week is full of good news, encouragement and hope of a return to Calgary.  This past week has been absolutely exhausting and finishing it off with another goodbye to Sadie and Shawn was a kick in the teeth.  We need things to turn around, we're starting to wear thin and I'm not sure how much more we can take.

Ranting and Raving

Being in the hospital has caused me to develop friendships with a lot of nurses, even some doctors.  There are times when friendship is simply not possible.  When we feel that our little girl needs something that she is not receiving, it's time to make a stink.  It's unfortunate, but with free health care you truly have to fight for things to be done at times.  This morning in rounds the bomb was dropped, surgery was cancelled.  This is not the same as being bumped for a child that is more sick than your own.  Your mother heart, although still annoyed, understands this and has a heart for the other family.  When the doctors simply change their minds, you feel nothing but frustration.

Today was a difficult day.  I felt frustrated, overwhelmed and annoyed.  I could not even pull myself together to pretend I was okay and distract myself.  It was a day of pure honesty, I was in a bad mood and there was no way to fake it.  It was my breaking point, the end of all patience and understanding.

Weekends in the hospital are horrible.  The nurses are all there working hard, but have hardly any resources with few doctors working or easily available.  I am not suggesting that doctors should have no family life.  I am simply being honest, being the family in the hospital...weekends suck.

Hope has started to throw up blood, at this point it is just small streaks.  Seeing as last time we found blood in Hope's poop and she almost died, I was very upset.  It started out as small amounts then, but turned into a massive bleed.  Our nurse today was fantastic and I asked her to find a doctor and gave her the heads up that I was not going to be very patient if things didn't happen.  I was too easygoing last time and allowed the bleeding to go too far, not this time.

When the resident came up to speak with me, I had a bad case of verbal diarrhea.  We were no longer going to stand for surgery cancellations and the doctors constantly changing their minds.  This was not fair to Hope or our family.  They needed to tell us what was happening immediately or we were going to insist on a transport back to Calgary.  If they're not going to do anything for us here, we are leaving so we can at least all live in the same city.  This particular resident is wonderful, he listened patiently and said he would see who he could get ahold of.  He also ordered an X-ray of Hope's stomach and has promised to keep a very close eye on her bleeding.

Within an hour, Dr. Ross was sitting in front of Shawn and me.  Excellent, it appears that being loud is effective once again.  It's unfortunate that it has to work this way, as it brings out a bad side in every mom.  Dr. Ross was very kind and patient with Shawn and me as we talked through what was going on.  He apologized for the constant changes in information we were receiving.  He agreed that it wasn't fair and promised we would have a decision by Friday.  That way we can decide as a family if Shawn and Sadie should move up to Edmonton next weekend, or if Hope and I will be returning to Calgary.  Either way, we will be together in the same city by next weekend.

The reason Hope's surgery was cancelled is because they are still not 100% sure that she needs to have this surgery.  Boston and Toronto have not come back with their answers on whether or not they would operate.  We should hear from them on Monday or Tuesday.  If both centres come back with the answer that they would operate, Hope will have her open heart surgery ASAP.  If they come back and feel that it can wait, Hope will wait for her surgery.  They are hoping she will be able to wait months or even years for the surgery.  This would give her some time to grow and become more stable for such an invasive procedure.  As soon as Hope's Chylothorax (it has been confirmed) is under control, they will get us back to Calgary so we can be together as a family.  Hope's left lung has drained over 1000 mls of fluid.  This fluid is full of so many important things that her body needs.

Hope was started on steroids and another medication that are meant to stop the body from leaking fluid into the lungs.  If this does not work, Hope will have to stop receiving feeds all together and will only receive the liquid nutrients once again.  After working so hard to get Hope eating again, this would be really discouraging for us, although we are willing to do anything at this point.  If that does not work, Hope will have to go in and have surgical intervention for the chylothorax - (where they would ligate the thoracic duct).  They would do the surgery right away, but it is only effective 50% of the time.  Therefore, if the other options work, it is better to avoid the potentially useless surgery if you can.  It was discussed that, if they did the heart surgery, they may do the thoracic duct at the same time but this is still just a possibility.

We are emotionally exhausted, extremely frustrated and tired for feeling like we're always fighting for Hope to get the care she needs.  We had an extremely long meeting with a GI doctor that actually seemed to care about Hope and wanted to help her.  We really like a few of the GI doctors in Edmonton, but find that they have seen Hope do crazy things for so long that they don't know what to do and have done nothing.  We are praying that this doctor will take up Hope's cause and will fight for her.  That he'll dig into her bleeding, diarrhea and feeding issues and FINALLY find something that will help her.  Please pray for a miracle.

Thank you for continuing to pray and for putting up with our constant needs.  I'm sure you're getting sick of hearing that we're going for surgery, and never going!  You are all a gift to our family and we are truly blessed to not be doing this alone.