Sunday, 31 March 2013

Happy Easter

Today we celebrate that Jesus rose from the dead.  I was especially touched today as I thought about the fact that Jesus' death allows us to be forgiven and spend eternity with Christ.  Eternity with Christ is a wonderful thing, obviously, but eternity with a whole hearted Hope is also worth celebrating.  I started to tear up in church as I thought about Hope having eternity with a healthy body and tried to remind myself once again that life on earth is brief in comparison.  I asked God to give me the strength, patience and trust I need to continue on this difficult journey.

This morning I got to the hospital and the nurses had everything ready for Hope to go.  We had asked last night if they would have things in place so we could surprise Oma and Opa at church with both the girls.  Shawn was at home dressing Sadie after her big egg hunt and I was getting Hope ready in her hospital room.  I got home, picked them up and we headed over to church.  We were both amazed that it had worked and we'd pulled it off.  

Hope was less content today and didn't last very long before she needed to go out to the nursery for a nap.  She looked adorable in her Easter outfit and I find myself very excited to dress Hope in "normal" clothes.  It was wonderful to introduce her to so many people that had only ever seen her in pictures.

After church we went up to Oma and Opa's house for the day.  Hope had a few naps and did fairly well.  She threw up larger volumes today but less frequently.  Overall I feel that it's getting a bit better, although she is still not able to tolerate her soother as her gag reflex is too strong.  As a result, I didn't try putting a spoon into her mouth today.  It wasn't worth it as I was positive she was only going to vomit.  Her diaper rash is back once again, she pooped 14 times today so it's impossible to stay on top of.  We really need her diarrhea under control so it doesn't cause dehydration on top of our other issues.

I'm interested to see what the doctors will say after Hope has spent 4 days out in the 'real' world this week.  I'm wondering if they will attempt to concentrate her feeds or continue to push for food.  They aren't sure if the feed is causing her to retch or if the medications are doing it.  I hope it's the medication and one that we can live without!  It's getting difficult to know that Hope is so close, yet so far away still from coming home.  I'm continuing to pray for a miracle.

Last year on Easter, Hope was a newborn in the NICU.  She was doing well at the time and was stronger than we had realized.  It was during this time last year that her body formed the clot to her liver.  We never knew it had happened, nor would we have understood the complications that would arise from it.  To look back at everything that happened is almost overwhelming.

Sadie stayed with her grandparents tonight and Shawn and I went back to the hospital with Hope.  We got her settled, checked by the nurse and ready for bed.  Once she was in a deep sleep we snuck home to get things unpacked and ready to start a new week.  Our new home care nurse has her first shift tonight with Hope at the hospital.  I'm praying that soon enough she'll be coming into our home to watch Hope.

Today is set aside for us to celebrate Jesus' sacrifice on the cross and the hope we have in his resurrection.  I always thought that was wonderful, but am more thankful now in life, that this world is not our home.  To watch Hope suffer and think that after her death she'll merely fade into the ground feels meaningless.  I find comfort in the fact that this life is but a minute in comparison to eternity in heaven.  Some days that truth is the only strength I have.

Saturday, 30 March 2013

The Meat Eater

Today was the third day in a row that we've had Hope at home with us for a day pass.  Shawn went to the hospital this morning and picked her up to bring her home.  Sadie was really excited to see her sister and have her home for the day.  It was definitely the best day we've had with Hope at home.  She was a bit happier and we even managed to get a few smiles out of her.  She continues to throw up, although they are spread out and the volumes are manageable.

Sending Hope back to the hospital at night is getting more difficult.  At 9 pm, no one feels like leaving the house to do anything.  Hope is usually settled with one of us on the couch and it feels wrong to shove her in a car seat and take her back to a place that is not her home.  We are looking forward to having her at home, although we have been reminded of how much work that is over the last 3 days.

The doctors are now recommending that we introduce meat into Hope's diet.  They want us to feed this to her orally.  I have no idea if this is going to work, but we'll give it a shot tomorrow as it would give her the protein and calories she needs to stay on the low calorie food that she appears to be tolerating more. Hope is gagging quite often and clearly on the verge of vomiting.  I imagine that as soon as I put something in her mouth, she's going to gag and vomit immediately.  We'll give it a try and report back to the doctors.  Her first taste of meat will be blended Easter turkey.

We were even brave enough to leave the house with Hope today!  We took Hope to her Oma and Opa's house to hang out for the afternoon.  She just watched everything that was happening and even had a nice nap on their couch.  She'll hopefully be there tomorrow for Easter as well.  Last year for Easter, Hope was just a newborn in the NICU at the Stollery.  I would have never imagined the year we've had since then.

Day passes are giving us a taste of what it feels like to be together as a family once again.  We are praying that this becomes our reality really soon and we're able to leave the hospital for good.  The only thing holding us back is weight gain.  If Hope could gain weight on the feed she's taking with the vomiting, we'd be good to go.  She's going to need more calories in order to stay out of hospital.  I can only pray that she shocks us all and loves to eat meat!

This Easter Bunny needs to go and hide some eggs!

Friday, 29 March 2013

Mixed Feelings

This morning the doctors agreed that, although Hope was miserable, she might as well be miserable at home for the day.  She needed to have bloodwork done before leaving and I needed to collect her medications and her feed.  Everything was set and ready to go, except the feed.  The nurse was a little half hearted about tracking it down.  After almost 3 hours of waiting, I was furiously pacing.  Finally another nurse checked the kitchen and found it had been brought up and simply sitting in the fridge.  On my way out, I passed our nurse sitting, chatting.  Thanks for looking for the feed and having any sense of urgency to get us out on a pass!  I wasn't very impressed and I usually LOVE our nurses.  Regardless, I was happy to be walking out as Hope needed a change of scenery to hopefully lift her spirits.

Hope threw up as we were putting her in the carseat to bring her home.  I weighed the blanket and found that she had only lost around 10 mls.  It sure looks like a lot more when you watch it happen.  Once home, Hope had 2 more minor spit ups and 1 more 10 ml vomit.  She was extremely irritable and very gassy.  She had quite the sound effects coming from her diaper throughout the day.

I feel horrible for her and want to ask them to stop, but I agree that we can't completely give up until we give her time to adjust.  Hope is throwing up smaller volumes and less frequently on this feed.  Normally if she is not tolerating a feed, she'll begin to vomit repeatedly until we have to stop the feed and start Pedialyte for fear of dehydration.  That is not the case this time.  I guess we just pray for joy in her tummy so she can start to have some quality of life again.

Today I wondered what I would do if Hope was home and I had her crying all day with Sadie running around and wanting my attention.  I could only picture myself needing a vacation before it even began. It's crazy how stressful it can be, yet I long to bring her home again tomorrow if they'll allow us to!

Hope had a great nap in the afternoon today.  She was sleeping on the bed as Shawn and I ate supper with Sadie and we all had a great time with no stress and no one missing at the hospital either.  In that moment, I longed for us to be like that all the time.  Around 8 pm Hope had that last throw up, a blow out diaper and nothing but crying coming from her.  I didn't feel so confident about her return home at that point and was slightly thankful she was going back to the hospital so I could regain my sanity.  I feel awful when I have those feelings, they happen though.

I'm not sure if they will push us to concentrate Hope's feeds tomorrow.  I'm going to fight for her to have more time as I think concentrating them will only make her more uncomfortable.  It's difficult to see her like this.  I just pray that this has a purpose.  If her body adjusts to this feed and it allows us to go home, these tears are worth it.  If we suffer watching Hope cry in misery and find out this feed hasn't worked, I will struggle to accept that this has been anything more than a waste of time.  Still praying for our miracle.

Thursday, 28 March 2013

10 Hours

This morning we got the okay to take Hope home on a pass for 10 hours.  I was so excited to have her home, especially with Shawn off work and Sadie around as well.  We arrived home just as Shawn and Sadie were returning from the dentist.  She was excited to see her sister and have her come inside.  Hope just stared at everything she saw and was completely over stimulated I think.

Before leaving the hospital, Hope had thrown up at 8:30am.  While at home, Hope threw up at 12:00, 4:00 and 7:00.  None of them were massive, although large enough, and they were never followed by another one immediately.  I'm still not sure Hope will gain weight if she's throwing up that often.  It also puts a great deal of doubt in my mind that this feed is working and that milk proteins are truly the problem.  I'd like to put her back on breast milk, but fortify it with a different formula this time.  I'm not sure how well that will go, but if this continues, I'll be pushing for that.

When Hope was on straight breast milk, she was completely happy and had no notice of the fact that we were feeding her.  Once the formula was added, the vomiting began.  Now that we are on pure formula, there are no smiles to be found and she is extremely grumpy.

I don't know how to feel right now.  I'm excited that we had 10 hours out of the hospital and feel blessed to have finally gotten that after 7 long months.  At the same time, I feel disappointed that our feeding troubles appear to be far from over and Hope's discharge does not appear to be close.  I'm not sure if the hospital will continue to let us out on passes for the weekend.  We're going to push to have them as the long weekends are horrible and none of the specialists are around very often anyway.  If we had her in her hospital room, I'm not sure she'd get any more attention than she would if we had her home during the day.  I guess we'll see if she improves or gets worse through the night.  If TPN has to be restarted, the hope of coming home again will be taken away as well.

Tonight they will access Hope's PICC line for 4 hours to run magnesium.  Her magnesium is extremely low and they aren't able to give it to her orally as it would give her extreme diarrhea, a problem she already has.  Her diaper rash is also back once again and the excessive diarrhea would not help.

I'm not sure how to ask for specific prayers any more.  What we need is plain and simple, a miracle.  I have no better way to say it or break it down.  For Shawn and I, we need endurance, incredible patience and trust to continue on what may be an extremely long and difficult road.  Today was a victory in a way, but also a slap in the face.  We now know that having her home is amazing, yet so far away.
Leaving the hospital for her day pass

At our house as a family for the first time since August

Wednesday, 27 March 2013

Daddy Dates

This is all second hand information as I did not set foot inside the hospital today.  I missed my little Hope like crazy and I am already looking forward to seeing her tomorrow morning.  She had a great day with Shawn.  She had only one small spit up around dinner time.  That's an acceptable amount as even healthy children spit up a little.  Shawn took Hope outside in her stroller again today and spent 2 hours with her outside.  I'm so thankful that Hope has been able to get some fresh air for the last few days, I truly hope we're able to continue getting her outside.

We are praying that she will continue to do well on her feeds through the night.  By tomorrow morning, Hope will have been on 100% formula at her full volume for 24 hours.  If she made it through the night without vomiting, we should be heading home on her first pass!  We plan to bring her home and keep her overnight, but that will be up to the doctor.  Previously our doctor had said we could bring Hope home for a sleepover and return in the morning for a check up.  We'll see if that is still the plan, it all depends on how Hope is doing.

I feel much more relaxed and refreshed today than I did on Monday.  I think it was important for me to take a day away from the hospital.  This is the first time I've stayed away for 24 hours and not felt guilty.  I guess I realized how much I needed this and knew that it was best for Hope if her mom was re-energized and ready to care for her.

Tomorrow I'll head to the hospital in the morning and Shawn will spend the day with Sadie.  He had a few flex days at work that he needed to use and decided to spend them with his girls!  Sadie will be going to her first dentist appointment and then visiting the Science Centre with Shawn.  I would love to have Hope here at the house when she gets home!  I am hopeful that this will work, although I feel guarded after the disappointment last time.

Tonight I hope to get to bed early as tomorrow night I may be getting up through the night to change Hope's feed!  Please join us in praying that Hope will continue to tolerate her feeds and do well through the night and into tomorrow as well.  I pray we are on the home stretch for real this time.  I would love to not be sitting in TPN training on Monday morning.

Tuesday, 26 March 2013

Fourth Time's a Charm

Change.  This is the theme of our lives with Hope.  Nothing is ever the same for long and something that works for a time, usually stops working.  Hope has tolerated and then not tolerated certain feeds for the last year of her life.  Now that we have tried every type of formula or feeding option, we are going back through and trying a second time.  As Hope gets older and her gut matures, there is a chance that something we previously failed at, will now work perfectly.

I often receive advice from people that are following Hope's journey.  To all of you that I have never responded to, you are not alone.  I get too many emails and do not have the time to respond to each one of them.  I do read each of the messages and blog comments and appreciate people taking the time to share.  I apologize if this has offended anyone.  Many people have suggested that we try removing milk protein from Hope's feeds.  This is not something that made sense before, as Hope was tried on a formula without milk proteins and actually become more intolerant.  As a result, it was ruled out.  For the first 6 months of her life, Hope was consuming my breast milk and a mix of formula.  She tolerated this beautifully and I was consuming a lot of dairy.  Now that we've run out of options, the doctors have decided to revisit this idea.  Yesterday, Hope was started on a formula that is free of all milk proteins.  I have never hoped that someone would have an allergy to milk protein so badly.  We really want this to work.

Today I walked into Hope's room, just minutes after she had spit up.  After spending the night on 1/2 formula and 1/2 pedialyte, I was sad to hear that she had thrown up.  Hope's tummy was distended and I feared that we were failing again.  As the day continued, Hope did not throw up or gag at all.  She appeared to become more content and her belly came down a little, but has a ways to go.  The doctors feel that if there is an allergy, her tummy will remain distended for another few days as her guts heal from the reaction to milk proteins.  There is still hope that this will work and we are moving forward.

At 6 pm this evening she was started on 75% formula and 25% pedialyte.  Tomorrow morning we will begin 100% formula and see how she does.  If she tolerates the formula for 24 hours, we will be sent out of hospital on our first pass.  Seeing as I was crushed so recently, I am choosing to be very guarded about Hope leaving the hospital.  I obviously hope that this will be successful, but am not getting too excited.  This is a formula that we have tried, and failed on 3 times in the past.

I am feeling more stable, as the reality of our failed attempt to get home has set in and I'm back into my routine of spending my days at the hospital.  I know that I need to be careful as I'm still fairly sensitive and don't want to burn out.  If this formula fails, we'll be starting our TPN training on Monday and will have at least another 4 weeks in hospital.  I have decided to take this Wednesday as a day for myself.  Shawn is going to spend the day at the hospital with Hope and I'll be taking a day to rest and treat myself with some Christmas gift certificates that I had yet to use at a spa.  I am praying that a day away from Hope will refresh me and give me the energy I need to finish her hospital stay, however long that will be.

I've been able to start talking to God more and no longer feel the anger I was feeling on the weekend.  I do still feel as though I've been in a heated argument with a friend, and getting back to a place of true comfort in our relationship will take a few more days.  It is a blessing to know that no matter how human I am, God is still the amazing forgiving God that he has always been.

Monday, 25 March 2013

A Night of Firsts

This day marks an end for me.  Today I experienced the first strong moment of wishing Hope had never been born.  I then looked at pictures of her and my heart instantly changed as the love I have for her flooded in.  The feeling was there, it was brief, but it came.  Today was also the first time in this journey that I have been truly angry with God.  Throughout my pregnancy and Hope's first 11 months of life, I have trusted him as completely as I was able to.  Tonight I felt extreme anger and even rage.  I can't help but feel defeated.  Today is also the first time I have truly wondered, why me?  I know the answers to these questions.  I know the promises of God and I know all the fluffy things that people will long to type after reading this.  I also know that in this moment, these are my feelings.  Beautiful or ugly, they are real.

Hope has begun vomiting again.  I have asked the resident to put her on pure breast milk for the rest of the night until the doctors return in the morning.  I have no idea what happens next.  Likely TPN and months of GI doctors that have no idea what to do and secretly believe it's Cardiology's problem.  Months of Cardiologists that believe her heart is the only decent part of her body.  Nutritionists that come up with some new great idea to feed her that works for a while, but then fails.

How many months of false hope, crushed dreams and a split family will we endure?  I don't need you to feel sorry for me, I feel sorry enough for myself tonight.  I know this post is ugly and I will be ashamed of the emotions I feel in this moment.  At the same time, I want to remember this dark and ugly place I find myself in right now and I hope it reminds me of why I never want to be here again.

Tomorrow I don't want to go to the hospital.  I want to see Hope, but I don't want to go to the hospital.  Are we fighting for Hope's life so she can live an institutionalized life in the hospital forever?  This is me, at my bottom and completely over this all.  I can't pray.  When I think about starting I can't bring myself to do it.  If I do start talking, only anger comes out.  I feel like satan has truly won with me tonight.  Is this what he's wanted all along?  To convince me that hope is not worth holding on to and that little Hope is not going to ever be home?

What is a mother supposed to do?  Without some kind of hope, it's not possible to get out of bed in the midst of this Hell.  Yet, every ounce of hope I've held onto has brought so much pain, heart break and tears.  If you give up as a mother, who fights for your child, what reason do they have to fight?  If I crawl into a ball and stop trying at life in general, who loves on Sadie and Shawn in my place?  I feel like my only option is strength, my only hope is Christ and my only joy will be in eternity.

Why?  I can't answer why, but I sure hope this Hell is not going to carry on much longer.  I want my daughters under one roof.  Not in 2014, not by Christmas, or the  My patience is completely gone and I'm done.  NOW would be a good time to stop the constant setbacks, stolen dreams and the unexplained impossible task of trying to feed Hope.

Even in anger, right now I know I need the Lord more than ever.

Sunday, 24 March 2013

I was wrong...

I have never been quite so pleased to admit I'm wrong.  Hope's Rotavirus sample came back negative today.  We are thankful that she does not have Rotavirus.  The Cardiologist came to see us today and decided that although Hope cannot be discharged tomorrow, they would like to send her out on an overnight pass.  If we take her home and she does perfectly well, we can simply bring her back during the day to get checked out by the staff and then head home again.  It all sounds so simple, but is not.

Currently Hope is on oxygen and having a difficult time coming off.  She must be off oxygen in order to come home for her passes.  Please pray that the diuretics start to work and she is able to come off of the oxygen.  The other major issue that could be a HUGE set back, is vomit.  Tonight at 6:30 pm, Hope threw up.  We are hoping that this was a one time thing that will not happen again.  If she continues to throw up all through the night, we'll have to face the fact that she is not tolerating her feeds once again. If that happens, we are likely to be in hospital for months.  What do we feed her if she tolerates absolutely nothing?  Looking for something for her to eat will be a huge task and will keep us there for a VERY long time.

I have been on a complete emotional roller coaster all day long.  At one moment our dreams of coming home are gone, then we get a glimpse of hope.  A few hours later it is taken away again, but returns once again.  I'm exhausted!  Please pray that tomorrow I am able to put Hope's carseat into our car and drive out of the hospital parking lot.  Even if it's only for a few hours!

Saturday, 23 March 2013

The Beast is Back

Hope began vomiting on a regular basis from 9pm until this morning.  They stopped her feeds in the morning completely.  As I got ready this morning I had to stop multiple times and have a good cry.  I was late arriving to the hospital and felt terrible.  I knew that poor Sherilyn had hardly any sleep through the night and was likely dying to get home for a nap.  

Hope was started on pedialyte to keep her hydrated.  The Cardiologist came and noted that Hope was extremely dry.  She wondered if we had overly dried her out with all the diuretics.  She felt that she could be vomiting from extreme dehydration.  I hoped she was right, but worry that she's not.  The pediatrician felt that Hope's X-ray showed a high level of poop in her bowels.  She was given a suppository and took care of business soon after.  Her poop smelt exactly like Rotavirus and she slept almost the entire day.  I'd like to believe that she was just tired from the night, but I'm positive she has Rotavirus again.  It is extremely rare and almost unheard of to get it twice, back to back, but Hope loves to do rare things.

Hope's poop was sent to the lab for testing and we should find out tomorrow if it's Rotavirus.  We asked the doctor to start Hope on 50% breast milk and 50% pedialyte, which they have done.  Hopefully she will tolerate that well through the night and it will keep her tummy used to getting milk and also give her more calories.  

Going home on Monday is pretty much out the window.  No one has officially said that yet, but I'd be crazy not to realize that reality.  If she has Rotavirus, our delay will be based on how long her symptoms last.  I would guess 7-14 days.  If she was simply too dry and needs to be balanced, we may only be delayed a few days.  That does not explain the extremely foul smelling poop.  It is identical to her smells from last time.

I went from extremely sad this morning to numb.  I am back to my numb and unemotional place of realizing that this sucks, but that I can't change it.  Every inconvenience about hospital life is getting more difficult to bear, yet I know I need to keep my head up for Hope.  

Please pray that we would not receive ANY further bad news with Hope.  Please pray that this is not a feeding intolerance in any way and that she'd be back to her normal feeds soon.  Join us in praying that whatever is wrong right now, will be dealt with quickly and easily.  We need to get Hope out of the hospital, it is clearly full of germs and not a safe place for her.

Friday, 22 March 2013

On Edge

I continued to spend today on the edge of my seat and did not make it through without a break down.  Hope threw up twice in the night, thankfully they were little.  In the afternoon Hope threw up a much larger amount.  She hadn't slept much all night and was still very fussy.  I feared the worst and was completely overwhelmed.  The doctors have decided that it could have been a result of the potassium supplement they gave to her.  They have stopped the potassium and we are praying that it stops the vomiting as well.

Sadie and I had a birthday party this afternoon.  Hope spent the afternoon with Melanie and her mom as Sadie and I went to the party.  I left the party at 3:30 and planned to get back to the hospital to talk with the doctors before running home to make dinner and run some errands.  The traffic was horrible and it took me an hour to get home!  By that time, it wasn't worth driving all the way over to the hospital and I didn't have enough time.  I was crushed, I wanted to check on Hope and I felt badly that she had only had a few hours with me in the morning.  All of these emotions just strengthen my desire to have her home.  I am constantly choosing one child or the other.

We are praying that this is our last weekend in the hospital and that things will move forward on Monday.  The hospital staff are getting everything in order for us, I don't see us being delayed by anything there.  If we are not able to leave on Monday, it will be Hope's body refusing to move forward.

All day today I have gone from high highs to low lows.  I had moments of joy as I watched Sadie play or listened to the things she says.  In the next moment I'm frustrated and anxious to get home and have a sick feeling as I just wait for the hospital to call with bad news.  It's not that I'm an overly negative person.  Our experience has taught me that terrible things happen to Hope all the time.  This is our reality and it makes it difficult to believe that we'll make it home on Monday like they say.

I have never wanted a weekend to go by more quickly!  Please pray for us as we walk through this stressful period of time and are overwhelmed emotionally.  I'm not sure what I'll do with myself if I make it home on Monday.  I'm pretty sure I'll be in shock and experiencing incredible joy as I put Hope down in her own room!  I also long to do very simple things with her, like dress her in something other than a sleeper!  I have so many cute clothes just waiting for her.  Thank you for continuing to journey with us, we know it has been long.

Thursday, 21 March 2013

A Walk in Trust

Right now I feel as though I'm ready for a fight and just waiting to be attacked.  Hope is so close to coming home and there are talks of her being discharged on Monday!  At the same time, the slightest set back or upset will change that and could delay us for days or weeks or months.  I want to trust God completely and believe that He is in ultimate control and will do what is best for our family.  Although I know that is true, I want Hope home and fear that His plan may not fit with my own.  This causes me to want to tell Him to let me have control for a few days and then I will give it back after I've gotten what I want.  I obviously know it doesn't work like that and it's not an option.  After 7 long months of living at the Stollery and Alberta Children's Hospital, my patience is completely gone.

I've said it before, but we are truly exhausted.  I am more over the hospital and this split lifestyle than ever before.  Now that the idea of being home on Monday has been presented, I can't imagine the heartache I will feel if this doesn't happen.  I just keep pleading, "God, please do not take this from me.  Let us bring our baby home."  I have prayed and asked for God's will to be done in the past.  I believe that God knows our hearts and the desires within.  He knows that I'm over delays, set backs and bad news.  I want to come home with Hope on Monday and I'm pleading with God to step in and stop anything that would get in the way of that.  I guess I'm hoping that IS His will.

Hope is officially off TPN as of 3 pm today!  She is almost at full feeds and should be there completely by morning.  I am thrilled to be at this point and so thankful that we will not have to go through the 4-6 week training on Home TPN.  That would keep us in hospital for much longer and would also be a great deal of work.

Hope is not doing so well being weaned off the IV Lasix (a diuretic).  She is on another diuretic already, but it is given through her NG tube.  The Lasix that goes through the NG tube is not as strong and Hope doesn't respond to them as easily.  Each time they increase her dose, it causes her potassium to drop and makes other problems for us. Today they started Hope on a third diuretic in an effort to get her to start peeing off the fluid in her body and not hold onto it.  Please pray that with these 3 drugs, we can get her body balanced and will not have to continue giving her IV Lasix.  If Hope can go all weekend without the IV Lasix, they will pull her PICC line on Monday and send her home!!

Another potential set back is teething.  It doesn't seem fair that we have to deal with the regular problems on top of our irregular ones.  Hope is breaking another two teeth and is extremely cranky.  Today she had a fever, but it was not found when her temperature was taken in a different way.  They decided it was a false reading, but warned that a fever will set us back another 3 days or more.

Please join us in pleading for protection over Hope as we work to have her home on Monday.  Pray against fevers or infections of any kind.  Pray that her little kidneys would do their job and that she would pee and not hold on to all her fluid.  Please also ask the Lord to give us peace, as my stomach is constantly churning and I'm stressed out.  I can see the end and I'm so close to it, that it feels almost painful to see it in the distance and not know that I'll ever reach it.

I am not under the illusion that Hope will never be hospitalized again.  We already have a Varices surgery booked for April 30th.  I just pray that going forward we have brief hospital visits that are inconvenient for a time, but not all consuming in our lives.  Life isn't fair and there are no guarantees.  We choose to love God, not because He gives us good things, but because He first loved us.  Saying that and doing it are very different.  Loving God when you know He is able to take away all of Hope's pain, and yet doesn't, can be difficult.  I know that in eternity with Christ, she will be whole and I have to choose to believe that she will be healed, it simply may not be here on earth.  I don't like that, but I have to find peace in that and know that God's ways are greater than my own and one day He'll show me how this painful journey has impacted the kingdom of God.  One day we may walk through Heaven and have the opportunity to meet people that are only there because Hope's pain drew them to Christ.  For every life that is saved, every tear we have shed through this hellish journey will be worth it.  Salvation is the ultimate goal, but it is not always the easiest road.

Tuesday, 19 March 2013

Homeward Bound

I have tried to teach myself that anytime a doctor says you will be discharged, to completely ignore them.  For some reason, that was simply not possible today.  After being told yesterday that we would be in hospital for another 2-3 weeks, today we were told it would be more like 1 week.

Once Hope's TPN (liquid nutrients) is running below 8 mls an hour, they will have trouble keeping the line open.  This has caused some re-thinking of our previous plan and the decision was made to speed things up.  The option was never previously considered as they worried that Hope would start to develop an intolerance to feeds as we got higher in volume.  That thinking changed after the mistake that was made last night.

Hope's night nurse yesterday, must not have looked in her chart when she drew up her feeds.  For over 6 hours she received straight formula.  She is supposed to receive 50% formula and 50% breast milk.  She did not throw up or respond at all to this change.  It was decided that we shouldn't push our luck and we've gone back to the mixture, but were encouraged by how well she did on full formula.  The hospital was not very happy with the nurse and I'm sure things will not be very nice for her.  Thankfully it didn't cause any problems with Hope.

Tomorrow I will meet with home nutrition to receive training for the feeding pump that Hope is going to come home on.  I have gone through this training before, but that doesn't seem to matter.  I'm sure I'll have to learn how to give her the injections once again as well.  I just try to be nice and listen patiently as they explain something to me that I already know.

When I was told we would be going home, I was speechless. I didn't expect to hear that we would be leaving sooner and I was shocked.  The doctors were so excited to come and tell me, one of them teared up with excitement as she watched me process the news.  It has been 7 long months in the hospital and we are ready to come home.  Please pray that nothing gets in our way of getting this little girl back into our home.

Monday, 18 March 2013

Good-bye Nursey

Hope continues to receive positive reports from the doctors that come to see her.  The cardiologist told me that she only comes for social visits now, Hope doesn't need to see them everyday.  They are thrilled with how she's progressing and have finally begun talking about us going home and no longer believe I'm crazy.  Hope should be on full feeds by the end of the week.  Today her feeds were held at 19 mls an hour for the next 24 hours.  This was done in order to concentrate them up again.  They want to make sure she tolerates that well, before adding more volume to her stomach as well.

Hope's diaper rash continues to look sore, but does appear to be improving.  I let her hang out in her birthday suit for her morning nap today.  She eventually peed and later pooped on the soaker pad.  I'll have to send my personal apologies to hospital laundry.  

Once Hope is on full feeds, we need to wean her off all of her IV medications.  This won't be a huge problem, other than the Lasix.  Hope absolutely loves her diuretics and it is never easy to move her from IV Lasix to oral.  They hope to find a balance that will work for Hope and have it done in a 2 week period of time.  After this is accomplished, the PICC line will be removed and Hope will be discharged!

Our doctor remains skeptical that Hope will be discharged by her 1st birthday.  It would be tight, but I believe it is possible.  I'm praying for a miracle for that day.  We should be able to take her out on a pass by that point either way.  It would be nicer to not return to the hospital room after the party though.  

I'm beginning to wonder what it will feel like to have Hope at home.  What will it feel like to be a true stay at home mom once again.  How will I adjust to full days with a high maintenance 1 year old and one very energetic 2.5 year old?  I want to be cautious that I don't romanticize returning home and forget how much work it truly is.  I need to prepare myself for it all, but in the end I'm up for anything that involves my family under one roof!

Tonight is wonderful Rachelle's last night with Hope.  It's hard to believe it is her final shift with Hope and that she is about to embark on a new adventure.  Please pray for Rachelle as she goes through such a major transition.  She has been an incredible gift to our family and we pray that she finds an amazing job and a life that brings her great joy as she moves on.  We know that God brought her into our life for many reasons.  Rachelle was exactly what our family needed, and we were what she needed.  Through the relationship that was formed, God was able to capture Rachelle's heart, the greatest and most important gift that can be received.  We praise God for everything He has given our family through her.

In an effort to make our marriage a priority and to focus on maintaining a strong friendship with one another, tonight was date night.  Shawn and I had the privilege of going out for Sushi and dreaming about the things we want to do as a family this summer.  We then drove around our favourite area of the city and explored, something we enjoy doing.  I often stop and feel overwhelmed by how blessed Shawn and I are to have the love that we do for each other.  So many relationships are destroyed by the strain of sick and dying children, but it is the power of God that keeps our marriage protected.  Please continue to pray for us as we continue on this journey with Sadie and Hope.

Sunday, 17 March 2013

Stop and Go

This afternoon I got the dreaded phone call from Shawn.  "They are stopping Hope's feeds", he said.  Hope had some blood in her poop and it was decided to stop her feeds.  Shawn left the hospital later in the afternoon and his parents took over for a few hours.  While in the car we received a call from the GI doctor at the hospital.  She kindly wanted to call and talk to me because she felt I would be discouraged by the stop of Hope's feeds.  She was on call this weekend, but had come in to take a look at Hope and her poop.  She carefully examined Hope's poop, a dream job I'm sure, and felt the blood was not from inside.

Shawn and I used to watch The Office and always quoted Michael Scott.  In one episode they were discussing their medical benefits and one character says, "Somebody has anal fissures."  Well, Hope is that somebody.  She has anal fissures and this is where the blood is believed to be coming from.  If the bleeding persists, they may put a scope up her bum to look and see if she has an allergy to cow's milk.  This is also a possibility, but would be much more difficult to control on donor breast milk.  If they do feel that she is allergic to milk, she'll be moved to a broken down formula.  In the meantime, they have decided to restart Hope's feeds and see how she does.  A potential setback has been avoided for the time being.

Please join us in praying that Hope's fissures would heal.  I'm sure she'll be angry at me for sharing such personal details of her life, if she lives long enough to be angry about it, I'll be willing to accept her anger!  Please pray that the bleeding would stop and that she does not need to be probed.  If she does, pray that she is not allergic to milk.  If she is, please pray that she tolerates the formula she'd need to be put on.  I think that covers everything!

Hope is still looking really well, she is very happy and continues to improve in her development.  She is battling a terrible diaper rash once again though.  We try every fancy diaper rash secret that we have, but with Hope it seems that we just have to wait it out.  Please pray that her skin does not break down and that it heals quickly so she's not so uncomfortable.  Today they've been opening her diaper and blowing oxygen on her bum.  I've never tried it, but it appears that Hope enjoys it.

We kept Sadie away from the hospital today, but are hoping she'll be able to see her sister on Wednesday as she's been asking to go to the hospital all day.  This is the first time in a long time that I have not set foot in the hospital.  It's been great to spend the day with Sadie and I know Hope has been in good hands.  It's also the cleanest our home has been in a long time, it's amazing what you can accomplish when you're actually home!  

Friday, 15 March 2013

Half Way to Home

We are now at 13 mls an hour of full concentrated breast milk.  That little girl is a super star and is tolerating it all beautifully.  The doctors keep telling me how well she looks and how well she's doing.  She is now off oxygen and was full of smiles and energy today.  

Sadie was up until 2:00am last night.  She did not have any more diarrhea or any vomiting.  She did have a very high fever and was clearly not feeling well.  She had a low grade fever this morning and was still not quite herself but seemed to perk up in the evening tonight.  We put her to bed fever free and are hoping that whatever that was is gone.  Maybe she got Rotavirus and your prayers removed it from her body and brought our healthy girl back!

Shawn slept at the hospital last night with Hope and spent the morning with her.  She smiles like crazy for him, you can tell she misses him during the week and is excited to see him on the weekends.  Shawn was off today as Melanie was away and we had to cover both kids.  Tomorrow I'll head to the hospital and leave Sadie at home with Shawn to make sure she's healthy before we let her go play with her sister again.  

Tomorrow we will reach the half way point to full feeds.  It's difficult to believe we could be half way to home!  We found out today that the nursing company we were blessed with Rachelle through, has found us another nurse.  We're hoping she'll be able to start in our home and not in the hospital.  If everything works out with the new nurse we'll be able to have a few nights a week of sleep.  Having Hope at home is a lot of work.  I reminded Shawn tonight that if Hope is home we can take turns getting up with the girls and have a sleep in day.  We haven't had that opportunity in a while, one of us is getting up to get back to the hospital and the other is up with Sadie.  We are going to take a second honeymoon once Hope is stable and will sleep a lot!  Thank you for continuing to pray us home!

Thursday, 14 March 2013

Smooth Sailing

Hope is now on 10 mls of breast milk.  Today they worked on increasing her concentration and will continue to increase her volume tomorrow.  She's done very well and continues to show that she is tolerating it very well.

Sadie had a bout of diarrhea today.  We are praying that her tummy just didn't agree with something that she ate and that this is not the start of rotavirus.  It is everywhere, they now have signs up around the hospital and should have them up in schools!  Please join us in praying that it stays out of our house.    We are hoping that Hope is the only one that will have it in this family and that we won't have this inconvenience.

With everyone being sick, we've had lots of cuddlers cancel.  We obviously understand and don't want anyone sick around Hope.  It is still a lot of work to figure out alternate plans and figure everything out.  Tonight we have craziness as Shawn needs to get to the hospital to sleep over, but I need the car here so Sadie and I can get around tomorrow.  We can't go over to the hospital with Sadie asleep in our home by herself.  So now we have Shawn's brother coming over to sit with Sadie while I drive Shawn to the hospital and come back with the car.  Hope needs to hurry up and get home so we can have both kids in one place.

I asked the doctors today if I could bring Hope home on continuous feeds or if she'd need to get back on bolus feeds.  They agreed that she could go home on continuous feeds as they would keep her on them for a week or two.  That will involve getting up every 4 hours in the night, but that's better than every 3 hours with bolus feeds!  One step closer to living under one roof as a family.

Wednesday, 13 March 2013

Big Changes...Big Results?

This poor city is being hit with rotavirus like crazy.  People are getting sick all around us and Hope's unit at the hospital has a huge outbreak of it.  This is my warning to the public, start washing your hands people.  Never eat without washing your hands with soap and be diligent with your kids.  Hand sanitizer doesn't kill it and barfing and diarrhea is not a good time.  Nurse Rachelle got it on Monday and does not recommend it.  We've been juggling our schedule to get things covered but have survived with the help of some very gracious people.  Sadie had a blast with her friend Jonah today and wasn't too upset about plans changing on her.  Thankfully she's a very easy going child.

Today the doctors met to discuss Hope and invited me in at the end to talk about their plans.  It was an encouraging meeting.  They've decided to go up 1 ml every 6 hours now.  That allows Hope to increase by 4 mls a day and will get us to full feeds in 6 days!  Please pray that this works beautifully without delays.  Can you imagine how incredible it would be to get her on full feeds and off of TPN.  We'd get to take her HOME!!  Holding my breath and praying for a miracle, home by Hope's birthday would be a dream.

Hope was put back on oxygen today as the fluid in her body is shifting in her lungs.  We're hoping the diuretics will work quickly and that she'll be back on room air once again.

Please pray for us as we make big changes this week and hope for BIG results.

Tuesday, 12 March 2013

Bring on the Fat!

We want to first celebrate the fact that the lab got a false result for Hope's platelets!  Her original sample came back at 29, but it was actually 95 when re-taken.  Praise the Lord that was a mistake and not a sign of kidney failure, liver failure, leukemia or any of the other horrible options.

Hope had a good day today.  The doctors are being very cautious with her feeds, perhaps overly.  I try not to push them too hard as I know that it's safer for Hope to take it slow.  She remains on 6 mls an hour, but was moved to regular breast milk today.  She is now getting the fat put back into her diet and we are hoping the Chyle does not return to her lungs.  She was X-rayed this morning and there was no Chyle, but her lungs were wet.  The doctors had been trying to get Hope off IV diuretics, but have decided to hold off and wean her more slowly.

Tomorrow at 1pm the doctors will meet to discuss Hope once again.  The Cardiologist, GI specialists and her Complex Care Team doctors will all sit together and make a plan.  If all goes well, we should be beginning our training for home TPN (liquid nutrients).  That way, regardless of what happens with Hope's feeds, we could bring her home in 4-6 weeks when our training was complete.  This is exciting, although I will be more excited if the breast milk works and we can bring her home sooner, without TPN.

Hope's spleen was enlarged on the ultrasound yesterday.  This has been a constant for her, but it was 1cm larger than the last scan.  The flow is still good and they don't feel there are any clots, but think this is the source of her low hemoglobin and platelet counts lately.  She should be well over 100 with her platelets and over 120 for her hemoglobin.  We are praying this is nothing serious and will resolve on its own.

Shawn and I have been busy in the evenings between returning home and getting Sadie to bed.  We have been trying to eat through the frozen things in our freezer and have done very well.  This week we took big trips to Costco, Superstore, M&M Meats and our favourite pre-made and frozen pizza place, Coco Brooks.  The freezer is re-stocked with quick dinners to help us out after long days at work and the hospital.  Still not doing so well with the motivation to clean in the evenings though.  By the time I clean up from dinner, do laundry and tidy, the deep cleaning is too much.  I long to have Hope at home and go back to being able to do these things during the day while she naps and Sadie watches a movie.  I never realized how much of a blessing it is to be a stay at home mom.  I knew it was a privilege, but never understood the true blessing it was to our entire family.

I continue to believe in the impossible for Hope.  Today when I mentioned to one of the doctors that I hoped to get her home without TPN really soon I got a funny look.  As she left the room she said, "that's overly optimistic don't you think?"  It was not said in a rude or demeaning way, more out of concern for my heart and the disappointment I'll feel.  I simply said, "maybe".  I didn't have the energy to explain that it was too late, I'm already in a dangerous place and there is no turning back.  I continue to pray for our miracle.

Monday, 11 March 2013

5 Pokes

Today was full of needles and interrupted naps for Hope.  It was one of those days that is difficult to watch as her mom.  She was given her injection of blood thinners this morning, then had blood work taken from her scalp in the late morning.  That blood work came back showing a severely low platelet count.  This is not good, it can mean a lot of different things, all of them bad.  To be sure, they then drew blood from Hope's hand.  That blood work was sent just before I left for the day and the results will be shared in morning rounds most likely.  Within an hour of the blood work, Hope was given her 5th dose of the RSV shot and will finish her night with another blood thinner dose, a 5 poke day.

Hope was taken down for an ultrasound of her liver and her spleen to see if the platelets could be getting trapped there.  We are praying and hoping that this is simply an incorrect lab result and that her platelets are not that low.  I'm not sure I could handle finding out that Hope has some other major issue or that our dreams of returning home soon are not going to happen.  Please pray that the doctors would be able to find the cause and that it wouldn't be something horrible, or that it would be an incorrect lab result.

Hope is now at 5 mls an hour and will be moved up to 6 mls in the night.  She continues to tolerate the breast milk well and her poops are not frequent enough to be of concern.  She's a regular girl, but not too regular and that's perfect!  Tomorrow the breast milk will go in with its full fat content.  I'm nervous, but hoping it goes well and that the Chylothorax is a thing of the past.  Please pray that her lungs do not accumulate fluid and that she is able to tolerate the regular breast milk and move off the liquid nutrients.

Hope remains on isolation, but we are hoping that this will be removed in the next couple of days as the virus passes through her body and she gets better.  We don't get to leave the room much whether we're on isolation or not, so it doesn't really matter to us.

Hope is doing so well with her physiotherapy.  She's sitting up with very little assistance now and can play with her toys while doing so.  You can tell by her face that she's so proud of herself when she's sitting up.  She is now able to reach for her toys and is much more interactive.  I'm so excited to have her at home one day with Sadie.  She is going to love watching her sister run around the house.  I pray this happens in the next few weeks, but am trying to remain a little bit guarded.  Unfortunately it's not working and I have my hopes up that this is the end of our hospital stay.

Sunday, 10 March 2013

We Survived, Mostly.

We survived the weekend without Daddy!  Shawn is currently on his way back from BC and should be home in a few hours.  I sure missed him, but with the help of Oma and Opa, we survived.  Hope had a decent weekend and is now up to 4 mls an hour.  She was meant to go up to 5 mls but the doctor was a bit worried about her weight being high this morning.  It was too high to be real weight and is more likely fluid retention.  They didn't want to cloud the picture of how she was doing with her also having extra fluid on board.  So we are going to wait until tomorrow to up her feeds, a slight set back.

Sadie and I decided to head out for a walk in the afternoon on this beautiful Sunday.  We were having a wonderful time until we were nearly home.  Sadie likes to run and often climbs in and out of the stroller when traveling a long distance.  As a result, I didn't have her strapped in.  I ran into a curb, hard, as the road was pooled with water and I didn't know there was a drop.  Sadie instantly fell head first onto the sidewalk and flipped onto her back.  The sound was horrible I was worried she would need a trip to the hospital. She ended up dirty, with a HUGE goose egg on her forehead and a little scratch on her nose.  We were lucky it wasn't worse.  I walked the rest of the way home feeling like a terrible parent and sat cuddling with her until bedtime.  I think I'll be checking on her often once she falls asleep.  It's been 4 hours and she never lost consciousness, but I'm paranoid!

Hope being at 4 mls and Sadie hitting her head were the two big events of the weekend.  Hopefully we'll move forward this week and I'll have more to share.  At the moment I need to get Sadie's blanket out of the dryer so she can fall asleep.  It got dirty in the fall and is a vital part of bedtime!

Friday, 8 March 2013

Faith in Feeding

I have learned through this experience that optimism is a dangerous thing.  In full awareness to the danger, I feel extremely optimistic that Hope will tolerate full feeds on the breast milk and will be home in less than 4 weeks.  I tell you this, not to convince you, but to prepare you for the extreme disappointment I will feel if this does not happen.  I'd like to believe that this is a mother's intuition or God speaking into my heart.  I simply believe this is going to work and it's going to blow the doctor's minds.  I often daydream of Hope being discharged on the morning of her birthday party and wheeling her into the party with no entourage of nurses or an IV pole.  It's a beautiful picture in my mind and in stubborn optimism, I refuse to let it go.

Hope has started eating once again.  For the next 24 hours she will receive 2 mls an hour of what we've started calling 1% milk.  Hope is technically out of the chylothorax treatment period and is ready to have fat reintroduced to her diet.  The doctors are playing it very safe and are not ready to hit her with full fats, especially with Rotavirus in her system.  So I continue to remove the fat from her milk, but with less care and a more laid back approach.  As a result, it's no longer fat free, but not full fat either, so we call it 1% milk.  This wastes much less of the breast milk and will ease Hope into the fat content of the milk that is to come.  Our goal is to have Hope eating 5 mls an hour by Monday morning.

Hope's poop was sent yesterday for lab tests and came back today, still positive for Rotavirus.  That makes this all more complicated, more food could cause more poop.  Please pray that as we increase Hope's feeds, that we do not increase her diarrhea and send her electrolytes off the wall.  That could set us back a great deal and will force us to continue waiting before we move up on her feeds.

If we reach Monday morning and Hope is doing well on the 5 mls an hour, they will begin upping her feeds by 1 ml every 12 hours and lowering her TPN (liquid nutrients) each time they up her feeds.  At that rate, it will take us about 3 weeks to arrive at full feeds.  Assuming there are no further set backs or unforeseen issues.  All of which I have already confessed will be very difficult to accept and will likely make me cry.  We all know how I feel about crying, it's like requesting a migraine.

Shawn is away this weekend with some guys on a ski trip.  This is so important for his mental health and it is always wonderful, as a wife, to see your husband enjoying life.  I'm not completely crazy though, I am still fully aware that this means a weekend of craziness for me!  There will be a few hours tomorrow where I will be at the hospital alone, with two kids!  This is not easy and will involve a lot of TV and ipad games for Sadie.  To all the TV hating parents in the world, I promise you would change your mind if you had a chronically ill child!  Please pray for my sanity as I balance both children and not having Shawn to help me at night when I feel like I need a break.  Please also pray for Shawn and his friends.  Pray for safety and for an all around enjoyable weekend of good laughs, fun memories and a mental break that will bring them back refreshed.

I am currently in a season of dreaming in faith.  I have decided that Hope will come home and that when she does, we'll have time to enjoy her.  It may not be as long as I would like, but I dream of that time and all that we'll be able to experience with her.  I know that God has plans for her life and I'm simply trying to be the event planner's assistant!  I am still aware that we could lose Hope and that it would be difficult to deal with that loss on top of my disappointment.  I'm not as delusional as some doctors may perceive.  I simply find that faith in God's ability to heal Hope, His ability to bring her home and His ability to give her a future, give me the ability to get up and start each day.  Although God is able, it does not mean that He will.  I choose to cling to the hope that He is not only able, but will.  I pray it is true and yet confess that I will love and trust Him either way.

Wednesday, 6 March 2013

Migraine and Marriage

Hope is getting better each day and is more like herself.  The doctors are hoping to start Hope back on her feeds on Friday.  The plan is to keep her feeds minimal for the weekend and start working her up on Monday.  We've decided to keep them low fat for the weekend, but not completely fat free.  This will show us if her intolerance was based on the Rotavirus, or a true intolerance to the feeds.

Hope had an ultrasound today that looked fairly normal.  They are continuing to hold off on further testing but are not ready to drop the idea.  Hope is still pooping, but not very often.  It's a fine balance, if she doesn't go enough, they'll worry that she has a blockage somewhere.  If she goes too often, it will show that the Rotavirus is really bad and she'll need more time off feeds and will risk throwing off her electrolytes.  Please pray that she is regular, but not too regular.  It sounds like a pretty odd prayer, but is truly important.

I have been fighting with a migraine all day and it was a struggle to engage with Hope at the hospital.  I wanted to spend the day in bed, yet wanted to enjoy the smiles that are slowly returning on her face.  I'm hoping to wake up feeling a lot better tomorrow and ready for a day with my girl.

Shawn and I sat at dinner tonight and talked about our marriage.  We've started reading a book about marriage and were discussing how we felt we were doing.  The first chapters focus on having a friendship and the importance of that.  We both felt that making an effort to be together for dinner and for me to sleep at home with my family has been vital to our relationship.  When I was living in the hospital full time, it was not healthy and extremely difficult.  Being at the hospital during the day with Hope is more like I'm a working mother, not an absent one.  It works for our family, although it is not our ideal, we are making it work.  It allows me to have a relationship with Hope, Shawn and Sadie.  Losing our home care nurse is difficult, as we realize it might take away some of those times we had at home together and move me back into the hospital more.  Please pray that God provides volunteers to stay with Hope in the evenings and overnight so we can have a balance in our crazy lives and keep our relationship healthy and strong.  Thank you to everyone that is already blessing us in this way.

Tuesday, 5 March 2013

Perking Up

When we hit a set back, I would expect myself to stop preparing for Hope to come home.  Last night I worked away at getting her nursery ready for her to come back.  I even had Shawn lower her crib mattress to properly fit her age.  It's as if I refuse to accept this as a set back and felt that preparing for her to come home would make it happen.

This morning Hope was extremely grumpy, but more alert.  By the end of the day she was much less grumpy and more content.  She is not back to her happy self, but is clearly feeling better than yesterday.  Her stool sample came back positive for Rotavirus.  At first I thought that was great, it meant she was not intolerant to her feeds.  This was short lived as the doctors were very concerned and not thrilled with this diagnosis.  The level of diarrhea that is often associated with Rotavirus is very dangerous for a baby that is so sensitive to fluid balance.  Please pray that Hope will not have extreme diarrhea and that her body would stay hydrated.  This afternoon her heart rate was very high and she had to be given a bolus (large amount at one time) of fluid to bring it down.

There is no treatment for Rotavirus and Hope will continue to be watched.  She will remain on antibiotics until her blood tests come back, just in case there is more going on.  The GI doctors are not convinced that Rotavirus is the only thing going on.  They don't have a better answer, but were skeptical that this was the entire picture.  I am praying they are wrong.  They are still lacking an explanation for the bile in Hope's stomach.  There is still a worry that she has a problem in her bowels and she may go through further testing if things do not resolve quickly.  Today her X-ray looked better and they decided to hold off on further testing in hopes that things will continue to resolve on their own.  Please join us in praying that this is true and Hope perks up quickly.

Hope will not be able to take in any feeds until her symptoms are gone.  Once this happens, there is a chance we'll be introducing her to breast milk with the fat included.  This would be great as we'd have more milk if we didn't need to remove the fat.  If Hope could tolerate these feeds, we could get her off TPN and hopefully home.

Today the doctor asked if we needed to sit down and discuss the seriousness of Hope's condition.  I declined the offer and let her know that we are aware of how serious Hope's condition is.  Apparently one of the doctors on GI felt that we clearly didn't realize how sick Hope was if we wanted to bring her home.  We are aware that she's not a healthy average baby girl.  We are capable of caring for her and want our family under one roof, even if we end up back in hospital later.

Another challenge we're currently facing is the loss of our home care nurse.  Rachelle has been a great blessing to our family and so good with Hope.  In a couple of weeks she will be moving away and we'll have to fill some pretty big shoes.  It's not an easy job to hire someone as we're looking for someone that wants night shifts.  They are able to sleep through a large majority of the shift if Hope is stable and would be able to have a day job or get things done.  Ideally I'd like to find a nursing student in 4th year or a nurse that wants to work but couldn't find something that worked for their family.  Please pray that we'll find a perfect fit and get things figured out quickly.  Please also pray for Rachelle as she makes a huge transition in her life.  She will be missed.

Monday, 4 March 2013


Today we took a step in the wrong direction.  At 2 am Hope started to throw up and had specks of blood in her vomit.  Her feeds were stopped but she continued to throw up, eventually she was throwing up green bile.  By 9 am she had spiked a fever and did nothing but sleep.  The doctors took blood, stool, urine and boogers to run tests on everything.  Hope was started on a medication to stop any further bleeding and an antibiotic as a precaution.

What a step in the wrong direction, we are so disappointed and are hoping that she has gotten a bad bug and is not showing an intolerance to the breast milk.  We should get some of the test results back tomorrow and more answers.  Hope's X-ray looked abnormal and her bowels are extremely irritated.  Throwing up green bile is a bad sign, it can often mean there is an obstruction in the bowel.  The General Surgery doctor came to see her and decided that her stomach was soft and an obstruction is unlikely, but still possible.

Until Hope's stomach stops draining bile, they are holding all feeds and she is taking nothing by mouth.  Please pray that her stomach settles quickly and we have more success when we're able to feed her once again.  Please also pray that Shawn and I would stay encouraged as we deal with another setback.  I miss the smiling happy girl that we had for a few weeks.

Sunday, 3 March 2013

Snow Angels

It's always wonderful to have Shawn home from work on the weekends.  We had a great weekend as a family and continued to get lots of smiles from Hope.  Shawn was able to spend the day at the hospital with her today and enjoyed a long afternoon nap next to her on the bed.  She adores sleeping next to Shawn or I and always has such wonderful naps there.

I was at the hospital for the morning with our family but left before lunch with Sadie.  We ran a quick errand before coming home to get away from the snow storm.  I was able to get some laundry done, tidy the house and at least consider cleaning it.  I never did get any of the cleaning done.  Sadie and I bundled up and did some shovelling.  She eventually got cold and wanted to go inside, Uncle James came to finish it for us.  Our neighbours on both sides have been such a blessing all winter.  Every time it snows they have been out shovelling to make it easier for me to leave for the hospital each morning.  My snow angels!

I was told this weekend that Hope will be taken to the OR on April 30th to have her varices looked at once again.  Please join me in praying that they continue to heal and will not need to be treated.  This would also show us that the pressures in her liver are continuing to improve.  I truly pray that we are out of hospital before that date and are simply coming in for the day.  

Hope is up to 10 mls per hour on her feeds and continues to tolerate them beautifully.  She is growing, gaining weight and developing.  It is such a wonderful thing to see and we praise God for the progress she is making.  I also continue to pray that the Chylothorax does not return and we're able to bring her home before March ends.  It may be an unrealistic dream, but it's one that I enjoy and choose to continue!

Thank you for continuing to lift our family up in prayer and following along.
My Amazing Smiles

Hot Chocolate with Mommy

Beautiful Hope

Friday, 1 March 2013

Lucky 13!

Today Hope weighed in at 13 pounds!  For the first time in her life, this is true weight gain and not water retention.  The doctors have even commented that her face is looking chubby in a healthy way.  I never thought I would be so excited about weight gain!  Preparing Hope's feeds and having to get to the hospital at a certain time in order to be sure everything is ready in time is stressful.  When you see progress like that, it's hard to be lazy!  Tomorrow morning I will have to get to the hospital early as Hope's feeds will run out.  It's truly a guess each day as you never know how much of each bottle is fatty, and how much of it is the low fat milk.  I didn't thaw enough milk to get her a full 24 hours and it takes 24 hours before the feed is ready for the fat to be removed properly.  As a result, I have to get there nice and early to get everything ready for her.  She is worth it.

Seeing Hope develop so much over the last few weeks is an amazing distraction.  It makes it more difficult when the doctors come with negative news.  The cardiologist came today to let me know that they had heard from Boston.  Boston felt that Hope should have a shunt added to her heart in order to assist with the high pressures in her aorta.  They also suggested that the Glenn (her second surgery) being reversed would lower the pressures.  Our cardiologist does not feel that reversing the Glenn is a good option for Hope.  I am not even sure if we should be considering anything with the improvement we're seeing in Hope.  It's difficult to accept that she could need another open heart surgery when she's doing so well.  They are still waiting for a response from Toronto.  Once that information arrives, the surgeons and cardiologists will sit down and discuss all the information and make a suggestion to Shawn and me.

Hope is now at 6 mls an hour with her breast milk.  We will begin going up by 2 mls per day until she reaches full feeds, 36 mls an hour.  She needs a higher volume while on breast milk, because it is low fat!  That will take us another 15 days to reach full feeds.  At that point, the doctors will begin adding the fat back in.  If she does well, they'll transition her slowly to the formula she most tolerated.  If these things are all successful, we'd be home in about a month.  The staff are all skeptical that this will happen, but most have been skeptical that the breast milk will work and it appears to be.  I am choosing to be optimistic and believing that she'll be home in April.

Last night I was up until 1am packing things up in the basement and getting things organized.  Tomorrow Shawn will spend a few hours running things to the dump with his dad.  Once the junk is out of the way, I should be able to start getting things properly organized and back into place.  I often wonder what the point of these annoyances are, I'm guessing God is teaching me something through the extra challenges.

Today I was reading about friendship and how true friends remain in the midst of struggles.  I was reminded once again of the amazing friendships that I had before this began, but also the ones that have been created.  I love to be a friend and I find it difficult when I don't have the time and energy to pour into people in the way that I want to.  I owe so many of my friends some good quality time and I look forward to providing it one day.  Thank you for continuing to pray, I wish you could all sit and enjoy her smiles these days.