Princess Passes

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

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

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

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

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

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

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

Pics of the Party! And a Look Back at Hope's First Year.....

A Party for Hope

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

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

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

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

Party status

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

Happy 1st Birthday Hope!

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

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

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

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

Back to Breast

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

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

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

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

Little Miss Piggy

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

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

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

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

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

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

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