Thursday, 28 June 2012

Hope's Magic Tricks

We are in our last three days of every night nursing.  It has been an incredible week of sleep!  On July 1st we'll begin our new schedule of having a night nurse just two nights a week.  I'm sure those nights will be the highlight of our week and something we truly look forward to.  The nursing agency has confirmed that our favourite nurse is going to be here for both of those nights each week.  This is a great blessing, as she'll be very familiar with Hope and won't need any instruction.

Sadie will be turning 2 in July.  I find myself thinking about Hope's 1st birthday as I plan for Sadie's 2nd.  We had a big party for Sadie's 1st birthday to celebrate her, I can only imagine how overboard I'll want to go for Hope.  We felt it was important to invite all the people who had poured into Sadie's life when she turned 1.  In order to do that for Hope, we'll have to plan it at a football stadium!  How could we ever thank all of the people who have poured into Hope's life?  As we celebrate every day we have with Hope, I'm reminded to celebrate every day I have with Sadie too, life is fragile.

We got a call from the anesthesiology clinic yesterday, Hope will be going on August 3rd to meet with them before her MRI in late August.  We still don't have an official MRI date at this point.  We will be going to the cardiologist on Wednesday next week.  Hope will have an echo of her heart done at that time as well.  Please pray that everything would be working properly and that her little body would continue to grow and develop as efficiently as possible.

Hope continues to stump her doctors.  Her newest trick, has been to vomit stomach bile without losing any breast milk.  While putting a feed into her stomach, she'll begin vomiting but manage to keep her feed and only lose bile.  They cannot figure out how this is even possible and have no answers for me. The positive part of this, is that she's not losing a lot of volume and continues to gain weight.  It's terrible to watch her retching and know that she's so uncomfortable.  She seems to settle quickly when the episode is over though.  We're hoping her stomach will settle and she won't have this problem for too long.

Thank you for continuing to lift up our concerns and for praising God for our progress as well.  We know that your prayers are having a powerful impact on Hope's life, as well as ours.  Sometimes it's difficult to understand why God doesn't stop things from happening.  We believe He has the power to intervene and chooses not to at times.  We have to hold onto the hope that His plans are greater than our own, and that he has a purpose for our pain.

Monday, 25 June 2012

Angelic Nurses

Today I am so thankful for nurses, they have been the angels around us this week.  Yesterday a friend, who is an NICU nurse, came over to take care of Hope.  Shawn and I took Sadie to church for the first time in 12 weeks.  She was excited to play with all the toys and other kids, she didn't even look back!  It was so wonderful to be there, I was incredibly blessed by the time of worship.

While we were out, our sweet nurse did all the dirty work.  Seriously, she did all of the jobs that I like the least when it comes to caring for Hope.  She very kindly changed Hope's feeding tube for us, the worst task by far.  She also gave Hope a much needed bath, I really don't enjoy giving bathes to small babies.  Having Hope scream while she's slippery and moving around is simply too stressful on most days.  What a true gift to me, I was incredibly blessed by all of this and had a great time out with Shawn and Sadie.

We've had a night nurse in the house this week as well.  Since our coverage renews for the year on July 1st, we're able to have a nurse every night this week without running out of coverage.  The nursing agency sent Rachelle, a true gift to our family.  Hope really seems to like Rachelle and we feel completely comfortable with her in our home.  She is incredibly kind, I woke up to all the dishes in the sink being washed as well as the kitchen disinfected!  She took all the dirty laundry downstairs and even worked at putting some of my Hope notes into the scrapbook.  She clearly has a very kind heart and has a desire to serve the families that she works with.

All that to say, I am so thankful for our nurses and am starting this week with a lot of joy and hope for a great week.  Sleeping has made me a new woman and given me a lot more patience for Sadie as well!  We continue to be blessed by the kindness of our friends and have felt so touched that you're not tired of our journey.  It is a true blessing to know that Hope has not been forgotten, and that she continues to be prayed for faithfully.  That is the greatest gift we could ever receive, as we know that the power of prayer has carried Hope through this difficult journey thus far.

We are not overly concerned, but were disappointed that Hope has not gained any weight in the last 2 days.  We're hoping she'll be heavy today and we won't need to follow up with any visits to the hospital.  She has been gaining so well since we've been home, so we're praying that will continue.  She has reached 9 pounds and is usually doing very well.  There are still days that Hope takes very shallow breaths and needs to be watched very closely.  Her colour is still not great and we often stare at her to decide if she's just her usual blue, or extra blue.  She sure keeps us on our toes!

Saturday, 23 June 2012

The Normal Things

I had a pretty normal Friday night, I know that's hard to believe.  Yesterday was Shawn's birthday, I decided it would be a great time to see all of the friends that we rarely get to see.  His brother has a birthday just 8 days later, so we decided to have a joint birthday party.  Our backyard fire was rained out, so we moved the party into James' house instead.  We put Sadie to bed and had Shawn's mom watch Hope.  James' house is right next door to ours, so I simply ran back and forth to help with feeds and give meds.  I had to have my cell phone close and I left a few times to tend to Hope, but over all I was able to enjoy myself.  It was a great feeling.

For the last two nights, we have been enjoying the gift of a night nurse.  Jessica was fantastic with Hope and allowed us to sleep for 8 hours straight, both nights!  I feel like a new woman after getting some sleep, I forgot what being well rested felt like.  To everyone who prayed for this to be a reality in our lives, thank you!  It is truly a blessing to wake up in the morning and not feel like I need to throw up.

Hope reached the 9 pound mark yesterday!!  We have been thrilled with her progress in the weight department and feel really encouraged by it.  We are praying that she'll grow quickly and have her next surgery sooner, rather than later.  She is still throwing up at least once a day, and had her meds changed by the cardiologist yesterday.  We're hoping this will make an impact on the barfing and put a stop to it.

There are some pretty rough days through this journey, but I still randomly receive encouraging cards that brighten my day.  Some days they're from total strangers and remind me I don't even know how many people are lifting our family up in prayer.  I still find it so encouraging to work on Hope's scrapbook and be reminded of all the people out there that continue to lift her up.  If it takes an army to raise a healthy child, it takes a nation to raise a sick one.  We could not do this alone and are so appreciative of everyone around us.

I'm looking forward to having Shawn home for the next two days, my weekends are usually a lot less stressful and more enjoyable.  Sadie is so excited when Daddy is home and usually doesn't want me to do anything for her.  Apparently Daddy is better at every task in this house.  When Shawn's home, I can sit down and relax a lot more, Sadie keeps him on his toes!

Thursday, 21 June 2012

A Light...

Today I am trying to remind myself, by the minute, that there is light at the end of the tunnel.  I'm on my own with the girls today.  My friends work tirelessly to try and have someone here to help me each day.  That is not an easy task on it's own, but there are days when someone is scheduled but illness keeps them away.  It's not something that can be avoided and no one is to blame.  I often feel like saying, "please come anyway!!" But I know that it's not worth the risk to Hope and, if I can just survive one hour at a time, eventually the day will end!

Today is one of those days, I'm alone.  I decided to try and get out to break up the day, so we packed up to meet Shawn outside in a park for lunch.  It's not easy to leave the house and takes me hours to get everything together and work around Hope's feeds.  We finally made it and had just met up with Daddy when Hope began throwing up all over herself.  She proceeded to cry for the majority of the time we spent with Shawn.  When I got home, after Hope had screamed for the entire drive, Sadie looked as though she might actually sleep.  She has not napped for the last two weeks and is trying to avoid napping at all costs.  She is visibly exhausted and I need her to nap more than I can express!

I begged God to let Sadie stay tired and spare me from the stress of an afternoon with them both, apparently He felt I didn't need the break.  Sadie and I have been fighting back and forth for the last 70 minutes.  I have tried everything with her but her stubborn will prevails.  Each time I go in she is rubbing her eyes, but refuses to give in and surrender to sleep.  She is also not just playing quietly, she is standing at her bedroom door and yelling for me......such a peaceful afternoon.

Hope has finally stopped screaming herself as I am currently blogging, pumping, running her feed and bouncing her chair with my foot.  Multitasking sounds too simple to explain what I'm currently undertaking.  You're probably wondering why I said there was light at the end of the tunnel.....I'm getting to that.

I got a call from our nursing care company, we have a nurse coming to the house Friday, Saturday, Sunday and Monday night!  They are working to book someone for tonight as well but haven't found someone just yet.  Our coverage renews on July 1st, as a result, we're able to have a lot of extra help for the rest of June.  The problem has been finding a pediatric nurse to fill the need on such short notice.  I continually remind myself today that I am going to sleep all weekend long! (at night at least).

We have also had a huge answer to prayer.   We found a nurse to watch Hope so we can go to church!    This Sunday will be our first week at church since the second week in March.  We are really looking forward to being fed spiritually and to Sadie being able to play with her friends in the nursery.

All that to say, some days are terrible, they feel like they will never end.  But I am spurred on when I know that tomorrow will be better and the days ahead are going to involve more sleeping.  Well, Hope has started to scream again...time to stop blogging!

Sunday, 17 June 2012

Tears and Sorrow

There are times through this journey that I have been able to pull myself together and be strong.  There are also times when I haven't been able to pull myself together and have crumbled to the floor.  This weekend was full of tears for me.  I sobbed myself to sleep on Saturday night and was full of regret on Sunday morning when a migraine stopped me from joining Shawn at Lincoln's burial.  The last 48 hours have been full of emotion, I can't seem to hold back the tears.  Nothing specific happened to start the emotional roller coaster, just a build up of everything I guess.

I feel utterly and completely overwhelmed lately.  This morning I laid in bed and asked God to give me the strength to get out of bed.  One day at a time feels like too much right now, and instead I ask now for one hour at a time.  I'm exhausted, all the time, even after having a good sleep.  I know that this is not forever.  Hope will not always eat through a tube and need so much constant care.  Life will not always be so isolating and one day I'll be able to return to being more "social".

I like to be independent, and I prefer to do things myself (surprise, surprise!).  Maybe it's just controlling, but I want to do it myself so I can do it my way!  At this point in time, I find it almost impossible to take care of Hope and be able to watch busy Sadie at the same time.  I usually fail to brush my teeth, have a shower or feed myself.  Thankfully, my friends have been great and many kind souls have been taking a turn at our house to help me.  I wish I could do it on my own, but I simply can't.

I am now struggling with my milk production.  I often fail to find the time and desire to pump and am falling behind with Hope's demand.  I am using more of my milk in the freezer than I'm returning to the freezer.  This makes me fear that Hope will have to have more formula mixed into her feeds and could cause her to vomit and not gain weight.  I find pumping, cleaning the bottles, mixing the feeds, thawing milk and everything else involved to be too much some days.  Every ounce of my being wants to throw in the towel, the mastitis set me back and damaged my production on one side as well.  I'm not sure if I'll make it until the second surgery but that is still my goal.  After that, Hope's digestion will be better and she'd be more likely to tolerate the formula.

We had a lot of discussions this past weekend and one thing stood out through each topic.  Mental health outweighs money in every aspect.  I think it would be good for me to have some time to myself to do the things I need to do and to get out of the house for some respite.  Although we were approved by Sunlife to have our night nurse, we only have $10,000 worth of coverage.  That sounds like a lot, but at $70 an hour, it will run out in approximately 20 days.  We are looking to privately hire a nurse to come over one day a week to stay with Hope while I take the day to run errands and maybe have lunch with a friend.  I think this will have a huge impact on me and will restore a lot of joy in my everyday life.  It won't be cheap, but we're not planning to retire in the next 10 years, so we have time to make it back!

Today all I humbly ask is that you pray not only for Hope, but for Shawn and me as well.  I feel like I'm reaching my limit, and I am completely drained and feel like I have nothing left.  The journey is far from over and the road still has bumps ahead, and I need the strength to make it through.  Please pray that I will have the social times that I need, the time with Shawn that I need and the time with my girls as well.  I want to be a good mom to them both, but find it hard sometimes to care for them both the way I would like to.  I feel sorry for Sadie, as she is often left in front of the TV to care for herself as I work to take care of Hope.  Many days I am grateful for Curious George!

I know that God has a plan for my life and I know He has a plan for Hope and for my family.  Right now it is all difficult to understand, but I know it's true.  And, thankfully, I know that He will give us every bit of strength and patience that we need.  I miss going to church each Sunday and to our Bible study during the week.  I miss being recharged spiritually and the support of my christian family.  In my ideal world, we'd be able to find a nurse that goes to our church who would occasionally offer up on Sunday so we could have someone to watch Hope while the rest of us went to church.  Soon enough the fall will arrive, and Hope will receive her second surgery and afterwards we'll have the freedom to do so much more as a family.  Life will feel more normal again, but today it feels like a long way off.

At the end of the day, however, the exhaustion, constant care, social isolation and emotional strain is a small price to pay for the life of our little girl.  I am reminded daily that we are blessed beyond belief to have little Hope at home with us, growing and doing so well.  Today, as I think of our friends burying their little boy, my struggles seem so trivial and pale in comparison.  No matter how hard this road is, I need to be thankful for what we have and cherish little Hope every moment of the day.  

Saturday, 16 June 2012

Blood Donor Week

Today I was a bit emotional, I forgot how wonderful "normal" life felt.  After a short taste of it at a bridal shower, I was feeling a bit out of sorts.  I miss leaving the house and feeling totally free.  Hope is a lot of work to care for, even with help.  When I leave her at the house, I know that whoever is there is going to be very busy and running around until I return.  It was still nice to get out, and it made me look forward to Hope's next surgery and life being a bit more normal afterwards. 

Hope is doing terribly with the bottle, I worry that she'll have the tube until kindergarten!  I know that's not true, but it sure feels like it might be somedays.  I'm not sure how to convince Hope that eating without the tube is a good idea.  If anyone has experience in this area and some ideas for me, I'm all ears.  We were hoping to make some progress while my mom was here, but Hope had other plans.  Please pray that we are able to get Hope to take oral feeds soon.

One of our friends is a nurse and has done a couple of night shifts to help us with Hope.  She is currently working for Canadian Blood Services.  We talked with her about our desire to have more people donate.  Hope used a lot of blood donations during her first surgery.  Please read what she has written below and think about doing something to help Hope and others in need:
"I’m sure many of you have noticed that this past week was National Blood Donor week, and perhaps you caught some of the coverage on the news.  No matter where you are across Canada or around the world reading this blog, donating blood is an amazing way to support Hope.  Hope will be undergoing another surgery in a few months, and will definitely require blood products during that time.  Even if you don’t have Hope’s blood type, by donating you help other people and the people supporting and donating in the name of their loved ones in turn help Hope and the circle continues.  Every donation gets separated into 3 products so one donation helps to save 3 lives.  Donating blood may be intimidating for the first time, and with the tight eligibility criteria like travel and medications, one might not even try.  I encourage everyone to take time to either call the 1-888-2-DONATE number to ask about your eligibility or make an appointment with your local clinic.  Donation takes approximately 1 hour and can be done every 56 days.  Start this new habit of saving lives today!"

Our insurance company is working to hire some paediatric nurses for us.  Once they have someone hired, the night shifts will begin.  Please pray that the perfect person is hired for our family and especially for Hope.  We are really looking forward to this starting, we appreciate you all praying that this would be a reality for us.  

Tomorrow we'll be attending Lincoln's burial.  I'm sure that everyone prays they never have a reason to attend the funeral of a child.  This is the first time we'll be seeing our friends since they lost their sweet son.  Please continue to pray for them as they walk through this terribly difficult time.  We have learned through this entire journey that it's the prayers and support of everyone around you that will keep you on your feet.  It reminds me once again how blessed we are to have the support of so many wonderful people.  Thank you.

Thursday, 14 June 2012

Victory Drill and Just Plain Victory!!

When I was in grade one, we had a book called the Victory Drill.  My teacher, Mrs. Toews, would have us read words from this book as we learned to read.  When we could read 50 words in 60 seconds, we were given a prize.  I was thinking tonight about how thankful I am for the time she took to teach me how to read.

I often sit in Hope's room and read while she's receiving her night time feeds.  I find it easier to fall back asleep if I don't watch tv, and find I have to do something to stay awake!  I just finished the book 'The Vow', an entirely different situation than our own, but a reminder that our God is faithful.  I didn't find the book to be fabulously written, but it is a truly inspiring story...that is true.  I was reminded that God will carry us through the difficult times in our lives and is always there.

The book tells the story of a couple who had to overcome a huge challenge in their marriage.  After a car accident, the wife lost all memory of ever meeting, dating or marrying her husband.  I haven't forgotten meeting, dating or marrying Shawn thankfully!  I do need to be reminded to cherish our marriage, protect it and take the time to focus on it.  At times our life with Hope can be all consuming and the idea of spending time together can seem impossible.  This book reminded me that I can't do this without Shawn.  God chose us as a couple to walk this road with Hope, and we need each other to make it through this.  God made a great choice when he chose Shawn as my husband, I often wonder how I charmed such a man into marrying me!

I can be very high strung and go from perfectly calm to super stressed out in a minute.  Shawn seems to lack the ability of getting over emotional about anything.  This creates an incredible balance, and it allows me to have some security.  I know that even if I crumble, Shawn is going to still be standing and can help me back up.  That's not to say that he doesn't have bad days or get discouraged.  He's not a big fan of the baby stage, even with a healthy baby.  I just find his consistency to be a real strength through this all.

As for our Victory...we were approved by Sunlife for our private nursing coverage!  We are now working with the nursing company as they'll need to hire a pediatric nurse for us.  We're hoping they'll be able to hire someone quickly and have them in our home ASAP!!  Once July begins, we only have enough coverage for 25 days.  We will likely need help until the fall and will have to space out our nursing care to a couple of nights a week to make it last.  It is still a blessing to have the coverage and the extra sleep, even if only for a couple of nights a week!  Thank you to everyone who prayed for this miracle to happen.  We are praising the Lord for this victory and what it means for our family.

Wednesday, 13 June 2012

One more doctor!

This week we met another doctor that will be involved in Hope's care.  She has quite the team of doctors that are following her every step of the way.  We've upped the volume in Hope's feeds and she is doing so well with it.  She continues to gain weight each day and is growing...slowly but surely!  At this point, there are no direct concerns with Hope's care, just continuing to keep a close eye on her and waiting for the next surgery.

The insurance company continues to not return any of Shawn's calls.  On Monday morning he got a message from them that said they would get back to him on Thursday.  Not sure why it takes 4 days to get back to someone, but we'll hope for good news on Thursday!  If we're rejected again on Thursday, we won't be giving up.  Please pray that on receive some good news on Thursday and will get some help, sooner rather than later.

Monday, 11 June 2012

Nana Arrives!

Another weekend has ended and another week begins.  We had a pretty laid back weekend for the most part.  Shawn took part in an event called City Chase with some friends.  It's basically a one day Amazing Race around the city of Calgary.  I had the girls at the house and managed to convince a few friends to come over at some point in the day to break up the day and give me some extra hands!  We survived the day, because of the help, and Shawn came home after a fun day with his friends.  Late that same night, my mom returned and is going to spend the week helping us out, Praise the Lord!!

Hope is not gaining weight as quickly as the doctors would like, even with the increase in her feeds.  She's a fairly fussy baby and loses a lot of her calories to crying some days.  We're going to talk with the nutritionist about upping her feeds to see if we can balance it all out.  She seems a bit stuffed up, so we're praying she doesn't have her sister's cold and that she'll continue to be healthy.

On Sunday we had Erika Blunt ( at the house taking pictures of Hope.  She was wonderful and so patient.  Hope was very unsettled and Erika had to work hard to get her to settle and be ready for each picture she took.  I highly recommend her if you live in Calgary and want to take pictures with your kids.  I'm guessing the fact that she's a mom helps, also having twins!  We're looking forward to seeing the finished product and will post some pictures when we can.  In the meantime, here is a sneak peak of a few pictures that my mom got over her shoulder.

Today we meet with the home care nurse, as well as the respiratory therapist.  We're still hoping to get coverage for a night nurse, but haven't heard anything back from our last appeal to the insurance company.  Sadie is coughing less and seems to be improving, we are thankful for that and continue to pray that she's back to her old self again soon.  We are also going to meet with Hope's new Pediatrician tomorrow.  We've heard great things about this particular doctor and are happy that she's willing to take Hope on as a patient.  She's agreed to accept Sadie as well.  This will make it easier for me to have them both at the same doctor.

Saturday, 9 June 2012

Evil Insurance?

I'm beginning to wonder if insurance companies are borderline evil.  I wanted to give Shawn's insurance company the benefit of the doubt and believe that they were working for our best interest.  We spoke to the nurse that did our assessment on contract for the insurance company.  She told us that they had recommended nursing care for us and had even begun hiring someone on our behalf.  The insurance company decided against their recommendation and proceeded to tell us something different.  Shawn was told that the nursing company had decided the care was not necessary.  Shawn continued his discussion with them on Friday morning but never heard back from them.  At this point, it appears they're going to drag their heals as long as possible and look for more reasons to reject us.  This is all so frustrating and makes us really annoyed.  Every morning that we begin our day exhausted, we like to blame it on the insurance company and not Hope!  Sunlife has a choice, Hope didn't choose this for her life.  

Hope is doing pretty well, she's tolerating her feeds well and is continuing to gain weight...slowly!  We celebrate every gram, it's all better than weight loss.  Hope can be pretty fussy at times in the day and difficult to settle.  Many times we pull air out of her feeding tube and find that she'll settle down.  There are days that are overwhelming with the two girls, but I try to use the evenings to recoup before starting again.

We were accepted by Tiny Light Foundation ( and will have our family photos done on Sunday.  It is a group of professional photographers that volunteer their time for families that have a hard time going to a studio for family photos.  We want to get some pictures of Hope, but aren't able to take her into a studio that is not disinfected and safe for her.  This will be a huge blessing for us and we're looking forward to posting some of the pictures for you all to see.  Hope is still very tiny, but her features are changing as she gets older.

Thank you for continuing to pray for us and lifting up our family.  A specific prayer need today, Sadie has a hacking cough.  We spoke to the cardiology department about moving Sadie out of the house, but they told us that it's too late now that her symptoms are showing.  They don't feel she's contagious any longer and have us just keeping a close eye on Hope.  Please pray that Hope doesn't get Sadie's cold and that we're able to get Sadie better quickly!

Thursday, 7 June 2012


The verdict is in.  Our request for a night nurse was denied by the insurance company.  Shawn, who is exhausted as well and has to go to work each day feeling tired, is not giving up.  He called the insurance company today to find out why and what to do next.  They are going to reassess our case, which means we need the masses to pray for a miracle.  PLEASE pray that they missed some crucial information that will change their minds.  This would be the difference between existing and living for us.  We've had so many problems with the feeding tube, and we really need a nurse to help us in the home and find a solution.

Hope reached 8 pounds today!  She is now 9 weeks old and is starting to grow a bit bigger.  The doctors are hoping she will reach 10 pounds by 4 months old, and be at a safer weight for her surgery.  We're headed in the right direction, as she appears to be tolerating her feeds very well.  Sadly, she is still not taking much orally and is a long way away from having her tube removed.  I like accessories, but the tube is not fashionable or fun :).

I'm finding it really hard to get things done when I'm alone with the kids.  If I'm focused on Hope, Sadie is always up to no good and nothing but trouble.  If I focus on Sadie, I get behind on prepping feeds, cleaning bottles, drawing meds and other important parts of Hope's care.  I count down the minutes before Shawn gets home from work.  I feel like it's almost impossible to care for Hope and Sadie without an extra set of hands.  The evenings are a lot easier, until the night time feeds begin and the lack of sleep catches up with me again.

I am bursting with love for my girls though, and I can't help but look at them and feel so blessed.  These girls are such a joy in our life.  Hope is a lot of work and she sure sucks me dry, but I wouldn't trade her for anything and she is worth every bit.  Sadie makes me laugh when I don't have the energy to carry on.  It reminds me that kids grow up so quickly and it won't be long before Hope will be finished all her surgeries and our life will be more normal once again.  Until then, it's one day at a time.  Please pray we can get the help we need - I don't know why they make it so difficult.

Tuesday, 5 June 2012

Mother of the year

If being a mother was a political position, I would be forced to tender my resignation today.  I am especially thankful that Sadie will not remember today and that there are no hidden cameras in my house! Why is it that both your children decide to be terrible on the same day?  Hope was fussy and not settled all day, she only seemed happy while in my arms.  If she was a healthy baby, I would have let her cry a whole lot more.  Unfortunately, crying is a lot of work for Hope and burns too many calories.  After her terrible day at the hospital yesterday, she only gained 11g today and needs to gain a whole lot more.  This makes me carry her around more and not leave her crying.  Sadie was in a very 'testing' mood today, she was straight up naughty!

I only had a 55 minute window today for a nap, Sadie and Hope were both in bed and I was going to finally get some sleep.  Sadie decided that wasn't going to happen and would not stay in bed.  It didn't matter what I did or said, that stubborn child was not staying in her bed.  She was certainly NOT having a nap, even though her eyes were half closed and she was terribly tired.

By the time Shawn got home from work, I was in tears.  I can only imagine how much a husband enjoys coming home to whiney kids and an overwhelmed wife.  Sadie is now in bed, and sleeping by a miracle, Hope is asleep in front of Shawn and our house is quiet.  We have 2 hours until the next feed and I plan to sit on the couch the entire time and only get up if I want something unhealthy and super fattening to eat!  I'm wondering if I should just throw out all my pre-baby clothes now and turn to a life of baggy, stretchy clothes until Shawn retires or we win the lottery and I can hire a personal trainer and nanny 5 days a week.

Thank you for praying for us, I can't imagine what a day like today would look like without people praying.  I would have dropped the kids off at Shawn's office and driven to Banff, checked into a hotel and stayed for a week!  Your prayers for our family and invaluable and we truly appreciate them.

Better late than never...

I do apologize for not updating as often, I really appreciate everyone praying and staying updated.  I know it's important to get updates so you know how to pray.  I'm trying to get one up each day, but some days find that I just don't have the time or energy.  Hopefully we'll hear soon about our insurance coverage.  If we have a night nurse, I'll have the energy to update!!

Monday morning was a bit crazy, as I expected it would be.  We changed Hope's schedule to feed her at 7 and give her meds then as well.  It makes it easier for us and means that her bloodwork would be due at 11 and not 12 noon.  I was up in the 6's prepping feeds and drawing meds.  Apparently, I should have been up in the 5's!  My hair was very greasy, but there was simply no time for a shower.  I don't even think I remembered to brush my teeth.  I won't be making any new friends at the hospital!  I started Hope's feeds and gave her meds right at 7.  The feed ran slowly and wasn't finished until almost 8, but that's when my appointment was due to start.  After the feed was done, I had some serious business to take care of in her diaper - it also involved a new outfit and blankets!  I finally got her into her carseat, collected everything I needed and was almost out the door when the hospital called.  They wanted to change my appointment with cardiology to 11am, but that wouldn't work as I now had Hope on a schedule that required her blood work to be taken at 11am.

We were finally out of the house and on our way.  I was half way down the driveway when Hope started to throw up.  I backed up the driveway and went into the house for new blankets and to bring an extra outfit.  We arrived at the hospital at 8:35.  I usually hate being late but felt that this would send a clear message to the cardiology department - they would never book Hope in for another 8 am appointment!  They started by weighing Hope, and she was 7 pounds and 9 ounces and 21 inches long.  I gave our main nurse the rundown of our weekend with the feeding tube.  They were furious when I told them that the ER had instructed us to push Hope's meds and feeds, even if we weren't able to check the placement of her feeding tube.  I knew that was terrible advice - unfortunately the same ER doc was on all weekend and it wouldn't have helped to return on Sunday.

The Dietician came to meet with me next, she said that Hope is gaining an average of 18g a day.  They were hoping to see at least 25g a day and have upped the volume she receives at each feed to try and resolve this.  The social worker came in next and spoke to me about how we were coping.  We're trying to apply for a government program that will help us cover parking costs, our trips to Edmonton and other costs associated with Hope's condition.  She agreed that we should apply, but let me know that most heart babies are denied coverage because they don't have a developmental or physical handicapped according to the criteria.  Please pray that we'll be accepted to the program, it would be a huge blessing.

Our cardiologist arrived next, he was so pleased with Hope and how she's doing.  He said that she looks better than he expected her to and was happy with her progress.  I spoke with him about Hope's exposure to others.  He was very encouraging and let me know that they tell people not to go anywhere highly populated, but that relates more to babies born in the fall or winter.  Now that cold and flu season is over, they are comfortable with us going out, as long as it's not peak time and not too crowded or busy.  Even our church is less crowded in the summer, I never thought that would turn out to help me!  We still need to be very careful, but at least I can get out every once in a while with the girls.

After our appointment in cardiology was finished, we were taken to the feeding clinic and met with the NG specialist.  Thankfully, Hope's tube was giving them trouble, and they were able to see what we were dealing with at home.  They inserted a new, larger tube and ran into the same problem.  They were totally stumped and said that they had never seen this happen before.  They didn't really have a solution or any answers for me.  They made some suggestions that they hope will help, but each time we run into problems with the tube, we have to go in and see them.  Please pray that our problems with the feeding tube will end.  I really don't want to go to the hospital everyday.

By the time we finished, it was 10:30 and time to head to the lab for blood work.  I have never seen so many children waiting to have blood taken, it was packed!  Thankfully, our blood work is time sensitive, they had to take us at 11 anyway.  I am always sure to let them know that Hope's veins are VERY small and it is really difficult to take her blood.  I'm pretty sure they think I'm exaggerating and never send in a senior person, even though I ask.  Once again it took 3 tries before they were able to get blood from Hope, and they had to get a more senior person to do it.  It's so frustrating as a mother to watch your child scream and not be able to do anything about it.

I often think of our friends, Lincoln's family, throughout the day and feel such a heaviness to pray for them.  Please continue to pray for them as they have a funeral this week and bury their son.  I cannot even imagine the pain they are feeling.

As a family, we are really tired all the time and find the lack of sleep catching up with us.  Last night, a nurse friend came over to do the 10 pm and 1 am feeds.  Shawn and I both slept very well and felt a lot better as we got up to start the day today.  We are praying we get our coverage and have a night nurse more regularly.

Saturday, 2 June 2012

Losing Lincoln, the Brave Lion.

Today has been a sad day for us, as we found out that Lincoln went to be with Jesus on June 1st.  Lincoln's family moved into the Ronald McDonald House at the same time as us.  There were 3 of us pregnant moms from Calgary, all carrying heart babies and due around the same time.  Only 2 of us came home with our warriors.  It's so difficult to think of Lincoln's parents, the fight they've been through over the last 8 weeks and the deep sorrow in front of them.  Please pray for them, we want to see them surrounded with love and all of their needs met as they grieve their beautiful boy.

Everything with Hope seems minor in light of the news about Lincoln.  We continue to struggle with her feeding tube and are getting very frustrated.  Hope was back at the hospital today with Daddy.  We have a new feeding tube in, once again, and have been told to use it all weekend, no matter what.  Apparently they can't do anything for us on the weekends and want us to use the tube until Monday.  We are hoping they'll have some better options for us.  Please pray that Hope will start to take her feeds orally and we'll be able to get rid of the tubes.  Today she took 10ml's from the bottle, she needs to take 60ml's.  I desire to breast feed Hope, but would settle for bottle feeds at this point.

Our appointment with the nurse from Shawn's insurance company went well.  We should find out next week what kind of coverage we've been approved for.  Please join us in praying that we'll be able to have a night nurse, at least a few nights a week.  I'm feeling ill today, I'm pretty sure it's from being over tired and not getting enough down time.  Having a night nurse would make a world of difference for all of us.

Friday was a bit frustrating, the hospital called and asked me to come in right away to have Hope's blood drawn.  They wanted to test her blood thinner levels and it has to be done exactly 4 hours after her morning dose.  This is horribly inconvenient with feed times and especially when you have no warning.  It took them 3 tries and 45 minutes to get the sample.  Hope screamed the entire time and was really unhappy.  Her levels were 0.05 less than they had wanted, so her dose has been increased to repair this.  Unfortunately, this means we have to rerun the test on Monday.  I have a cardiology appointment at 8am with Hope, but have to be back at 12pm for her blood work.  It's going to be an interesting day with a lot of improvising her feeds and meds.  Pray for me as I work through all of the challenges with Hope.

Today we took Sadie out on a date with Mommy and Daddy.  A nurse friend came over to take care of Hope while we focused on Sadie.  We took her to Build-a-Bear, and she got a new dog that barks when you press his foot.  She paired him with some glasses and a pink purse!  She's a pretty funny kid.   She knows what she wants and is set on making it happen.  It was a very kind gift we received from a group of people we've never met.  Once again we are humbled by the kindness of others and reminded that we are not in this alone.  After some lunch Sadie suckered her Daddy into a ride on the carousel.  It was a great time and we truly cherish the moments we have with both of our girls.