The Thinking So Far.....

This is Charlotte, Amy's mom writing on the hospital computer..... Anyway.....here's the scoop so far.  At rounds today, the GI specialists and cardiologists reported that the thinking thus far is that the ascites (inflammation in the fat around her organs) and the fluid in her abdomen are longstanding issues that are a result of a combination of things.....they think the problem actually began back when she had her blood clot and was without food for a prolonged amount of time.  They think the distention of the abdomen is like a "post traumatic" reaction and that it will eventually come down once they resolve some other issues.  The thought is that she is leaking protein from somewhere - possibly bowels or kidney.  They are going to do some more tests and change her feeds to include more protein-enhanced formula and just try and slowly bring her back to full feeds.  The consensus thus far seems to be that this is all "fixable" and that they just need to figure out how to fix it!!  The best news of all is that they do NOT think that her stomach issues indicate heart failure!!  Her echo yesterday showed very good heart function, for which we are elated!!  They are weaning her off the Milrinone and will first sort out her stomach issues before they proceed with her heart cath.  It was mentioned today that, if the heart cath shows everything is good to go, they will proceed with the Glenn while she is here!!!!  This would be awesome!!  So......please pray that the docs continue to figure out the stomach issues and that they will resolve quickly - pray that Hope's heart function remains good and the cath shows she is more than ready for her Glenn!!  Also, pray for Sadie that she will get better quick and that the rest of us would all remain healthy.  We are so aware of your prayers for Hope and all of us and we thank you with all our hearts for praying for sweet Hope!!

Edmonton, again?

It's pretty weird to be back here, it just feels so normal.  Walking through the Stollery, the Ronald McDonald House and driving through Edmonton feels natural.  I don't know why we expect things to change so much while we're gone, they seem exactly the same to me.  I do think about Lincoln and his precious family all the time while I'm here, I miss him more here.

I feel more confident while Hope is here in Edmonton, the doctors in Calgary are fantastic, but Edmonton is known for its expertise and it shows.  They are putting Hope through a complete work up and checking everything out for themselves.  She did so well in the echo today, they had done one when she landed, but she was crying too hard to get a clear picture.  Today she was an angel as I held her for the echo, she really is a lot happier.

We need to get up early to get back to the hospital for rounds.  Hope is going to have a rough night tonight, she's having her feeding tube changed, oxygen prongs re-positioned, tapes changed and a bath.  It doesn't sound like the kind of night she's going to enjoy.  My loving heart wishes I could be there to comfort her, but my realistic one knows that it would break my heart too.

We're slowly settling in, we didn't bring a whole lot.  We have all the bags unpacked and moved into our new home/room.  We only have 3 yogurts and 2 bananas in the fridge, I don't think breakfast will be that exciting tomorrow morning!  We need to get to a grocery store, it didn't work out for today but I'm sure one of us will get there tomorrow.

We are truly touched that so many people are continuing to pray for Hope.  Thank you all for caring for our sweet girl, she has taught us so much about the love of God.  I can only begin to imagine how much he loves Hope!

Just the facts...

We are just leaving to grab a quick dinner and I know some people have been waiting for an update that don't follow along on Facebook.  I'll give you some of the facts and will try to write more later...

Hope has been doing well here, she's still on oxygen but is stable.  Today they moved her up to the ICE, this is a step down from ICU but a step up from the ward.  Until she finishes her Milrinone trial and is ready for the heart cath, they didn't need her to to be in the ICU.

They did another echo today and said that her heart function is looking good.  The cardiologists here do not believe the fluid in her abdomen is related to heart failure, although they have no idea why it's there.  It looks like the heart cath won't happen until next week.  With the long weekend, I assume that Tuesday would be the earliest they'll take her.  We're truly praying that if she is a candidate for the Glenn, that they do it while we're here and don't send us home and tell us to come back again!

The Milrinone is doing something, Hope is a lot happier.  Either that, or she just missed the nurses here in Edmonton and is happy to be back!  In case you haven't heard, we miraculously got into the Ronald McDonald House!  This is a true gift and we feel blessed to be back here and not be in the hotel any longer.  My mom also arrived last night to help us balance the hospital visits, Sadie and life in general.  I don't know how a family would survive without support from family and friends.

Pray like you never have before, PLEASE!

It is clearly God's timing, he reminded how much I needed Him and then dropped a bomb on me today.    Hope did well in the OR and now has a PICC line in her left arm.  We were thankful that they were able to use her left arm and didn't risk clotting her right side, the best access point for a central line in her second surgery.

We are now in the ICU.  Hope is receiving her first transfusion of Milrinone and seems to be tolerating it well.  The teleconference is now over, and our cardiologist came and met with me right away.  He didn't come with the best news, although he came with answers.  Hope is now being transferred to Edmonton, she'll be leaving today or tomorrow.  Once we arrive in Edmonton, they'll give her a bit more time on Milrinone and will then perform her heart cath.

We officially had the transplant bomb dropped on us today.  I apologize to all the people close to us that are reading this online and were not contacted directly.  I feel so numb right now and simply couldn't make the calls, sorry.  If Hope's heart cath does not look very good with her heart function and pressure, she'll be going on the transplant list.  We need to pray like we have never prayed before, that the Milrinone will make an incredible impact on her heart and we will still be candidates for the Glenn.

Hope will be taken by air when the transport can be arranged and we'll be driving up behind her as a family.  We're not sure what we're doing with Sadie, at this point, but I imagine we won't be sleeping as a family for a long time.  If Hope's function and pressure are good enough, she'll be receiving her Glenn in Edmonton.  It looks like we'll be there for a while.

We also need you to pray for some healthy children to start moving out of the Ronald McDonald House.  They are currently full and unable to take us, although we're on the waiting list.  The RMH is closer to the hospital than the hotels, are we're more comfortable there.

I'll try to write more later, right now I can't even think straight.

My Heart.

I can’t even begin to describe the emotions I’m feeling tonight, but I’m sure going to try!  Holly has a new heart.  It was the first thing I learned this morning.  I was instantly thrilled for them, and overwhelmed with the shock of how quickly one was found.  Within minutes I was crippled with the realization that another family was losing their baby, one they would not have had much time with.  I felt so torn.  I wanted to celebrate and break down in tears all at once.

As the day wore on, I thought a lot about Holly going back into the OR.  I felt panicked as I thought of myself in Angela’s shoes.  Was I ready to give my sweet girl over to Dr. Ross again?  The first time I handed her over, I hardly knew her.  I knew that she was beautiful, that she felt incredible in my arms, but I didn’t know her like I do now.  Since then, I’ve learned what my little girl looks like when she smiles.  I’ve learned that she feels safest when she’s wrapped tightly and no one can harm her.  I’ve learned that she likes to be held in the cradle hold and not on your shoulder, that she likes you to angle her so that the soother will stay in her mouth while leaning against your body.  I’ve discovered what it feels like to be stared at in public, but also how amazing it feels to proudly introduce her to a friend.  She’s taught me that it doesn’t matter if people stare at the tube hanging out of your nose or the pudgy tummy that doesn’t fit into your pre-baby clothes!  Hope has taught me that I’m stronger than I ever knew, that I can conquer any battle I set my mind to.  My parents always told me that I was stubborn, I just never realized I could be stubborn about survival as well.  I’ve learned from Hope that we can love God with our entire hearts, but have nothing to say to him.  That although I never felt angry with God, I still wished he had given Hope a whole heart.  I sometimes wonder why He allows Hope to be poked 15 times before an IV line can be placed, why she clotted, why her belly is distended and why she had 2 line infections.  Sometimes I would look into her pussy eye from her blocked tear duct and wonder, “doesn’t she have enough things to make her uncomfortable?”  Yet, through some miracle, I still trust Him with her in the end, completely.  So, am I ready to hand her over to Dr. Ross again?  No, but I will and not because I trust Dr. Ross, but because I trust God’s plan for Hope’s life.

Later I started to think about the bond I have with Angela and Sharla.  I don’t know a lot about their past, I don’t know either of their middle names.   Yet, I still feel incredibly close to them both and deeply cherish them.  I felt sad that I had talked to Angela through the entire journey with Hope and Holly.  We had compared treatments, medications and challenges.  It was difficult to realize that Holly no longer has Hypoplastic Left Heart Syndrome, she has a whole heart!  I wondered if I would feel more alone in my journey without my HLHS buddy?  Then I thought of Sharla and realized that her and I never shared the bond of having babies with the same heart condition.  The bond we all shared was the journey we had been through together, not the different heart conditions our children had.   We are all connected by the love we have for a child we carried and delivered with a broken heart. 

I can’t say that I’m sitting here tonight feeling powerful or strong.  I feel more like a little kid, hiding under my bed in a thunderstorm.  I don’t understand why Hope’s IV was not successful tonight, I don’t know why she has to go to the OR tomorrow or why our journey is taking us back to the ICU instead of back to our house.  I’m tired of sleeping alone, and being torn away from Sadie all the time.  I hate missing out on her smiles and her giggles through out each day. 

I stood in the ICU today; 6 failed IV’s, the news that we were headed back to the OR, about to be moved back to the ward and Hope asleep from pure exhaustion.  My mind was blank, I wasn’t really thinking about anything.  The nurse commented on how calm I was, and wondered if I was always so calm.  Calm, not the word I would use to describe myself.  I knew in that moment that I was covered in prayer, that all around the world people were praying for my girl.  Although God was not answering our prayer to find IV access or to get direct answers about Hopes health, He was still giving us peace.  Isn’t that what we truly needed, and the other things we only wanted?

Tonight as I sit on the horrible bed in Hope’s hospital room I finally realized something.  There are a lot of things I want, but only one thing I need.  I need Jesus in my life.  He is the only constant through this all, the only thing that makes sense in this crazy and confusing world.  I don’t know why he allowed Hope and Holly to be born with half a heart.  I’ll never understand why he took Lincoln home so soon.  But I know one thing for sure, He loves me, and that’s all that really matters anyway.  

Ping Pong with my Baby

Our new life has taken on the appearance of a ping pong game.  This afternoon we were moved down to the ICU to get Hope started on Milrinone.  The doctor that was once the head of the entire ICU came to get an IV started for Hope.  After 6 attempts, 4 in her head, they decided they weren't going to get a good IV and didn't want to put her through any more attempts.  The screaming is dangerous for Hope's heart...mommy's too!  I had to leave the room and walk down the hall to avoid bursting into tears.

So...we were moved BACK up to the ward for the night.  Tomorrow, Hope will be taken to the OR and have a PICC line put in.  We're not very excited about this, obviously.  We're worried about Hope clotting again and losing access to her heart for future lines that she'll need in surgery.  We're worried about Hope needing to be intubated in the OR again tomorrow, she still has a weakened voice from the intubation last Monday.

The teleconference tomorrow will take place between 12-3pm.  Please join us in praying that all these geniuses involved in discussing our little girls care would come up with a perfect solution.  We really want to see Hope make some progress and we would love some answers!

Please continue to pray for Holly as well.  She is still in surgery and we likely won't get any updates on her until midnight.

Holly's Heart!!

Today is a very exciting day...Holly is in Edmonton getting her new heart!  We are so excited for Holly and her family.   This is a gift like no other.  Please pray for them as Holly goes through the surgery and also recovers with her new heart.  We also ask that everyone is praying for the family that has lost their little one as well.  I can only imagine the pain they are feeling and only wish we could have the opportunity to thank them.

Today is a day of change for Hope.  She is now waiting for a bed in the ICU.  The doctors are still unsure of what's really going on with her.  They've decided to put her on a trial of Milrinone (a heart drug) to see if helping her heart will make an impact on her other symptoms as well.  We welcome this idea, and we're hoping this will be the turning point for Hope.  Please pray that the Milrinone will have a positive impact on Hope's overall health; that it would heal her issues in the abdomen, and also make her heart stronger.  Please pray for her as she'll need to have an IV put in, and this is not an easy task with Hope.  She is already covered in bruises from the failed IV attempts during her MRI.  We pray that the first try would be successful and that the IV wouldn't fail and need to be restarted.

Tomorrow the cardiology teams in Edmonton and Calgary will meet through teleconference.  Please pray for wisdom for everyone involved as they discuss Hope's condition and make decisions about her next steps.  We are praying as a family that she would get sent to Edmonton soon and be able to have her second surgery.  It sounds like she may have to have a heart cath first, if that's the case, we're hoping it will happen right away.

Adding Some Tubes

Hope is not doing well, we seem to be heading down hill now.  I still feel very light headed and like I need to lay down.  I'm at the hospital tonight, I honestly think I might get a better sleep.  Last night I was so scared that I hardly slept.  I'm sure you assume that I was worried about Hope, but I was actually scared because I'd called 911 on a domestic disturbance happening across the street!  Could life get any more interesting than it already is?  I got to bed late and was scared, being home alone.  So tonight I'll sleep at the hospital and try to sit up when Hope is fussy.

Hope was put back on oxygen this evening, she couldn't keep her oxygen levels high enough.  This basically confirms that we won't be going home at all this weekend.  At this point, I'd be shocked if we made it home with Hope before she's presented on Tuesday.  Part of me wonders if we'll be going from this hospital to the one in Edmonton directly.

I wish I could sound upbeat and optimistic, but I still feel exhausted and totally overwhelmed.  Please continue to lift up our family.  We also need you to pray for little Holly this week, they've been re-admitted as well and are in the ICU.  These little girls are fighting a tough battle right now.

Make Room for the Breakdown

It has arrived, my breaking point.  I am beyond frustrated and really discouraged today.  Something needs to change soon or I might really lose my mind.  Today I have the ability to eat without running to the bathroom shortly after, a step in the right direction.  Sadly, I still feel terrible and have been getting worse as the day goes on.  I pulled myself together and went over to the hospital with Sadie and a friend.  Shawn took Sadie out to spend some time with her, and we stayed at the hospital.  It had been 64 hours since I'd last seen Hope, I don't think I'd gone more than 5 before this.  Her cry is weak and sounds so sad from the breathing tube during the MRI.  She was very fussy, they said she's been like this the entire time.  I put on a mask, washed my hands and took my sweet baby into my arms, she was silent and fell asleep.  Hope wanted her Mommy and must think I've completely abandoned her.

The GI doctors have decided to take Hope off breast milk completely and replace her feeds with a special type of formula.  This will increase the protein she receives and give her a specific fat that they feel will be easier on her stomach and could help with the fluid retention.  They're not really sure, but have decided to give this a shot.  We're up for anything at this point and are willing to try it out.  They also want to tap the fluid in her abdomen to run some tests on it.  They're waiting until the cardiology meeting on Tuesday to make further plans for this.  If Hope is sent to Edmonton for a heart cath, they will have them tap the fluid while she's sleeping through that procedure.  If they aren't going to do the heart cath, they'll freeze her tummy and do it through ultrasound here.  That means a lot more waiting for us, and continued questions that go unanswered.

Some people have said we may get discharged on Sunday, while others say they aren't planning to discharge until after the decisions are made on Tuesday.  We're totally confused and are waiting to find out what's really happening.  The main problem with Hope having heart issues as well as GI issues, is two departments.  We get different stories from both specialists and are constantly confused about what's going on.  They write orders to change something, wait for the other department to agree and it takes 12 hours to make a small change.  Hope is the one that suffers through all these delays and we are losing our patience.  Hope is on continuous feeds again tonight, she should be back on bolus feeds but the orders weren't written in time to make the change!

Sadie is on her third sleepover of the week and misses her Mommy and Daddy.  I wish I had the energy to take care of her, but it's simply not possible.  Shawn and I only see each other in passing, have difficulty talking on the phone because of the hospital cell phone reception and feel very disconnected.  Tuesday could not come fast enough at this point, I feel like throwing in the towel and going on vacation by myself until we have some answers and life feels a bit more normal.  In case you didn't pick up on it, we need your prayers this weekend.

Tuesday, the Day of Discovery?

Not much to report on today...
The doctors came to see Hope today and have decided to let the doctors in Edmonton decide what to do next.  Hope will be presented to the Edmonton Surgical board on Tuesday.  At that time, they will decide if they want to tap her stomach to identify the fluid, do a heart cath to check on her pressures, or book her Glenn (second surgery) to see if that will resolve these issues.  Until Tuesday, we wait.

Hope was put onto continuous feeds today as her tummy is not tolerating her food well.  She will stay on continuous feeds until morning.  They will then attempt some bolus feeds and see how she does.  Once she is eating well and tolerating it, they may send her home until they decide what to do next.  This could be interesting as my "bug" has completely wiped out my milk supply.  I'm totally dried up now and have 2, maybe 3 weeks of milk left in the freezer.  We'll need to begin introducing formula and this could throw Hope's tummy off.  Please join me in praying that Hope will do wonderfully through this transition and it won't make her uncomfortable.

As for me...I've developed a system.  I have a book in the bathroom for the time I spend there.  I have a computer, the tv, my cell phone and home phone in the family room.  I spend my time on the couch or the toilet.  I'm pretty sure I should stop trying to eat, it never lasts long and I tend to be sicker.  I'll try a liquid diet and see how I do I guess.  I'm worried about my run training and falling behind.  It's already a stretch for me to run and being a week behind is going to be tough...I'm going to need a miracle to make it to the finish line!

Thank you for caring about my gross digestive problems and my sweet girl.  Shawn is enduring the hospital, although he has developed a lot of respect for me.  He can't believe I've done this so much in the past, he's miserable.  If you're healthy, he likes visitors and non-hospital food.  We're lucky his employer has been so patient with our family through this craziness!

Feeding the ducks while we wait for Hope to finish her MRI 

Holding Hope after the MRI, before the reaction started

Laying in Hope's crib in the ICU

All Alone

There have been days that I dream of being all alone, not taking care of anyone's needs but my own.  I am currently all alone at the house.  Shawn is at the hospital with Hope and will be spending the night with her on the ward, Sadie is at a friends house for the night, and I don't feel the freedom I had dreamed of.  To be honest, I feel helpless, frustrated and trapped in this house and my sick body.  My body has finally stopped disposing of all the fluids inside it, I'm just left with the hangover of it all.  My prayer is that I'll feel 100% after a good sleep tonight and will be able to return to the hospital and be with Hope.

Anyone who spends time with Shawn and I would agree that I am more aggressive.  Shawn is not a fan of confrontation and is often very easy to get along with.  I have a strong personality, like my grandma, and I believe God has used it throughout my life in a lot of positive ways.  Not being at the hospital has been driving my crazy, nothing seems to be getting done and I'm not there to stir the pot.  So, tonight I picked up the phone and started to call everyone I could find to complain to.  Within 30 minutes we had some doctors looking at Hope and had alerted the staff that I can make noise from my house too!

Hope's stomach was vented after her girth reached an all-time high of 46cm.  They removed a lot of air and some fluid.  This has brought her down to 42cm, better than 46cm but still very swollen.  I'm not sure what GI has been up to all day.  I know they have a lot of sick children to see and prioritize their patients accordingly.  I simply wish I could get same face time with them and push them along a little faster as they deal with Hope.  We still have not heard from them, apparently they're looking at the MRI, not sure how that takes all day.  Although, I've never looked at one before and should be cautious to judge.

Once again our support has been such a blessing.  One friend drove from the south to pick up some breast milk and supplies for Shawn and Hope, and drove them to the hospital.  Another 2 friends worked to keep Sadie busy during the day until she left on her sleepover.  She knew I was in my room and it's not an easy task to keep her distracted when Mommy is so close by.  A lovely soul brought us dinner, I was even able to send some to Shawn at the hospital and someone else picked up some groceries for us.  I'm continually blown away by the outpouring of love and will never be able to repay the kindness we've received.

On Tuesday, Hope will be presented to the surgical board in Edmonton.  At that time, they will decide if they want a heart cath done before her next surgery.  This will expose the pressures in her heart and lungs and give them a better idea of what to expect.  They will also begin discussing a surgery date for her.  I am truly praying that we can be through this portion of Hope's journey before the end of September.  I realize those are lofty goals, but really feel like it would lift a lot of stress, questions and anxiety.

Shawn's sleep is so important to him, he stayed at the hospital once before and was miserable.  Please pray that he's able to get some rest tonight and won't be exhausted tomorrow.  I miss my family, please pray we'll all be back together in our home soon!  Hope will go back on continuous feeds tonight to give her stomach a rest.  They've also decided to lower her feed volumes tomorrow to see if this will help.  Please pray that her weight is not hugely affected by the calorie cutting.

Looking forward to the day when my life is boring and I have nothing to blog about!

Thankful for Every Bit of Good News!

Amy has asked me again to update the blog, so I have copied an email that I just sent out to Hope's "prayer warriors"!.........

Just got word that Hope's echo today shows that her heart function has returned to normal and there is no permanent heart damage from yesterday!!!  Yay God!  We are rejoicing in this good news and are thankful to God for His healing hand on Hope during the night.

The docs are not yet breathing a sigh of relief, however, as there are still many unanswered questions and issues yet to be figured out. The fluid in her abdomen is still a mystery and they are not sure they have an accurate picture of the pressures in her heart. There is some talk about transferring her to Edmonton to do a heart cath. This, however, would put her at risk again for a reaction to the contrast dye, even though it is a different dye than they use with the MRI.  Hope's reaction yesterday is unprecedented - the docs said they have never heard of a reaction like hers and that she will be a case for medical journals to come. We would prefer for her to be much more "typical" to say the least!

Amy is still down for the count and Shawn is with Hope at the hospital.

Still, we have so much to be thankful for!  At times like this, it's so easy to be focused on all the "bad" news and gloss over the good news because everything is still not "perfect".  When I stop to count our blessings, they are many:

- it is such an answer to prayer that Hope's heart function is back to being good - just as it was before the MRI reaction

- the fact that her SVC has 100% of blood flow going through it is another miracle in itself.  Previously, it was 25% still blocked but that has cleared making her SVC perfectly ready for the Glenn

- although there is never a good time to get the stomach flu, yesterday morning would have been MUCH worse

- Hope survived a very unexpected severe reaction to the MRI or anesthetic (they are still unsure which it is) and managed to pull through some pretty scary moments!

There is power in prayer......so please keep praying everyone!

Pray that:

- Hope will remain stable as they attempt to figure out some of the issues she is facing

- for medical expertise and a plan of action that is best for Hope

- for protection from infection and further complications

- for renewed strength for Amy and Shawn, especially Amy right now.  It is torture for her to not be able to be with Hope right now.  Yesterday, she crawled right in Hope's crib with her in the ICU just so she could be close to her and comfort her.  (Not too sure Shawn will attempt this today!!)  : )

Your support, love, encouragement and concern is such a gift to all of us.  All of you, and your prayers to our mighty God, are making a difference in the life of our Little Miss Hope!

Love Charlotte (Amy's mom)

MRI Gone Wrong

I'm not sure if it's a mother's love or intuition that makes you

nervous before you hand over your child. I was very nervous as I

handed Hope to the anesthesiologist this morning and began to cry when

she was out of the room. Liz, Shawn and I prayed for her when they

took her away and then went out to busy ourselves until she was

finished. I find it easier to stay busy and not think about what's

happening when Hope is in the OR or under heavy sedation.

Around 11:30 we were called back into the recovery room to see Hope as

she was waking up from the sleeping drugs. Shawn managed to wash his

hands before me and was holding her when I finished. I tried to be
patient, but didn't last long before I stole her back for myself! She

was waking up slowly, making little noises and seemed to be doing

well. She sounded a bit funny from the breathing tube, but that was

to be expected. We weren't thrilled with the idea of intubation, but

knew that trusting the anesthesiologist was the best idea - she seemed

like a really great doctor and very caring.

They wondered if some fluid had been caught in her lungs from the

fluids she was given during the MRI. I was texting my mom and some

information was mixed up between texting and the update. They did not

see any fluid on her lungs in the MRI, only in her abdomen. They

merely assumed she must have had some in there from the low

saturations of oxygen. An Xray was ordered to look into this, but no

one was very alarmed at this point, just being cautious. No fluid was

found on her lungs in the Xray.

Hope's oxygen sats were still low after the Xray and the doctors

decided they wanted to watch us for another 30 minutes before we would

be allowed to leave. They also called up to cardiology to see if they

wanted to come and see her. They had discussed admitting her if she

had fluid on her lungs, but didn't appear to. Around 1:30, Hope

started to get really fussy and was crying quite agressively. Her

face began to turn beet red and something in me felt very nervous. I

told the nurse that her colour was very red.  She told me that it was

normal when a child screamed that loudly. I had a moment of pure

strength and let her know that I had never seen Hope that colour, she

turns purple when she's angry, not red, and I wanted the cardiologist

to come see her immediately.

In what seemed like a whirlwind, the cardiologist came down and agreed

that no child should be fire engine red, even while screaming. She

was crying like she was in pain, would not settle, had horrible colour

and her sats were still very low and not in her normal range. We knew

we would be admitted and were not going anywhere tonight. I felt

terribly uneasy and knew this was all wrong and not normal, not even

for Hope. The intensivist from the ICU was called and it was decided

that Hope needed to be taken to the ICU immediately, she was simply

not stable and struggling to breath.

An echo was ordered of Hope's heart.  Sadly, her function is not as

great as it was. Throughout the MRI, Hope's heart function still

looked to be doing well, as it has been all along. This is no longer

the case, whatever is happening has damaged her heart function on the

right side, the only side she has. They are hoping it is temporary,

but aren't sure, and will take another look tomorrow. We  PRAISE

GOD that Hope's SVC has NO clots in it at this point. She was 25%

clotted previously, but is 100% open now! Her left side is still

fully clotted off and never expected to re-open, but the right side is

draining the upper body beautifully and the SVC is clear.  This is

SUPER important for the next surgery.

They are now thinking that Hope has had a severely rare and very

serious reaction to either the contrast dye from the MRI or the

anesthetic that was used. She will never be able to have a contrast

MRI again, a sad thing for a heart baby. She has been given high

doses of Benadryl, but showed continued reaction and has now been

given steroid treatment to keep her stable. Hope will remain in the

ICU overnight for continued steroid treatment and observation. If she

is stable in the morning and seems to be recovered, we'll be moved up

to the ward again. Not sure how long we'll be here this time, but I

really am starting to memorize the cafeteria menu!

It's been a tough day emotionally, a simple reminder of how the 'easy'

steps in Hope's care can go all wrong. They have never seen a

reaction to the MRI contrast dye at the hospital here. There are

documented cases in the world, but very few and almost none as severe

as Hope's. She truly likes to make an impression on health care

workers! I'm so glad Shawn has been here with me today, it has been a

great strength. We strongly feared being sent back to Edmonton and

are thankful to be in Calgary at least.

I'm emotionally dry as a desert and could use a long bath and a nap.

My heart rate has been racing all day and I'm starting to crash now

that Hope is more stable. I sometimes wonder if I'll die young after

all this craziness. Please pray for us as we continue to walk through

this mess with our beautiful girl. Please also pray for Sadie, she

gets passed around a lot when these things happen and it can be really

hard on her. Thank you for continuing to stand with us, we know we're

needy!

MRI Update

This is Amy's mom, Charlotte.  Amy has asked me to update the blog for her....

Hope came through her MRI okay and is awake and making noises and seeming like herself.  They had to intubate her for the procedure because of the risk of vomiting and aspiration, although she was extubated immediately after the MRI was finished.

Although there have been no initial results given from the cardiologist, the MRI did show that she has fluid on her lungs.  Her oxygen saturations are also low - in the 60's.  Typically, Hope's O2 sats are in the 70's and even 80's.  They are taking her down to x-ray right now to get a look at her lungs and are talking about re-admitting her.

Even though this journey with Hope has been full of ups and downs, you still aren't prepared for the "downs".  To think that this fluid in her abdomen has now moved into her lungs is not the news we were wanting to hear.   Nevertheless, we lean on God for our strength and peace when the road takes a twist and we continue to ask Him to keep her little heart strong until her next surgery.  We're not sure of the next steps but will keep you updated as we hear.  Again, your prayerful support is worth the world to us!

The Moment of Truth!

Tomorrow morning is Hope's MRI, we'll finally know what's going on inside her.  The specialists have talked about the MRI as though it will finally show us why she was in the hospital last week and what is happening with her heart.  We're looking forward to some clarity with her condition and are also thankful that she'll be presented to the surgical board.  We're not very excited about her being put to sleep for the procedure though.

Please pray for Hope tomorrow.  Her MRI will begin at 9am, so she'll likely be put to sleep just after 8:30 or so.  The MRI is supposed to take 1.5 hours and she should wake up 20-30 minutes after it's finished.  Please pray that she will not have any problems with her breathing and they won't have a reason to intubate her.  Please pray that she won't have any side effects from the medication and will wake up easily without any complications.  Knowing how I feel before this MRI, I can't imagine how I'll feel when we have to hand her over to the surgeon in Edmonton for her second surgery.  This journey sure tests a mothers strength some days!

If you happen to be up late reading this, please pray that I'm able to get some sleep tonight and that anxiety doesn't keep me awake.

We're at Home!

After returning to the hospital this morning, Hope was cleared to come home with us until we return on Tuesday for the MRI.  We went through some craziness to get Hope's prescriptions filled, it's not easy to find some things in liquid form.  We eventually had success and are going to settle back into our routine until we go back for the MRI.  Please pray for each person that will come in contact with Hope through her MRI.  I'm trying to stay relaxed and not worry about her being put to sleep, hopefully I succeed!

The Glory Pass!

We heard hints all day of the potential weekend pass, it would allow us to go home for the weekend without being discharged.  At 6pm we finally got a verdict, we weren't getting a weekend pass but we were getting a day pass.  I'm writing this from my living room, Hope is asleep in her favourite bouncy chair and I'm going to sleep in my own bed!!  We have to be back at the hospital tomorrow morning at 9am.  The cardiologist will re-examine Hope and make the decision on whether she has to wait at the hospital or at home for her MRI.  Hope's MRI is going to take place this Tuesday morning and will hopefully give us some of the answers we've been looking for.

I am looking forward to sleeping in my own bed, but not looking forward to the night feeds.  Hope's schedule is really off from being in the hospital and she has meds due in the night that are usually given during the day.  She's on two new medications that I need to add to her schedule as well.  I need to be on top of these things and will have to force myself to be alert in the middle of the night.

Last night the doctors attempted to up Hope's night feeds and lower her day feeds to reduce her vomiting.  This seemed like a good idea, but was an epic fail.  I got hardly any sleep last night as Hope threw up from too much volume and had a rough night.  If I can make it through two more nights of feeding, and Hope gets to stay home after our check up tomorrow...we'll get our night nurse back!  Then I can have an incredible sleep and catch up from all this craziness.

The doctors are leaning more heavily on the conclusion that Hope is indeed showing early signs of diabolic heart failure.  Her second surgery is still an option and will help with this condition a great deal.  We're hoping this will push her surgery date up and she will be more medically stable.  Please pray for Hope, I know so many of you already do and it is truly powerful.  We know that her very life is a miracle and we are so thankful for your commitment to pray for her.  She is fighting hard and doing well, but her life is truly fragile and we want to see her thrive.

Something very exciting, is that our Hope Holly Lincoln team for the Heart Beats run on October 13th is now 40 people strong!  It will be incredible to spend the day with so many people that are raising awareness and helping support an awesome organization that supports families of children with CHD.  We also got our final approval from FSCD today and will now receive some help with our hospital parking!  It won't cover it completely, but is a huge blessing and we are thrilled to stop spending enough on parking each month that we could have been sponsoring 3 children through Compassion.

A very cool moment from today...the nurse who helped send us out on our day pass and got everything together for us, was someone that has been following Hope's journey and praying for her.  It was so awesome to hear from a total stranger that knew Hope before she even met her.  I love knowing that someone who has spoken Hope's name to God is now touching her body and caring for her health, a beautiful thing!

Whether we have to go back to sleeping at the hospital tomorrow night or not, tonight is a breath of fresh air for me and I am thankful to be home with my family.  Thank you for caring for us and continuing to follow along.

Waiting...

I don't have much to update you on.  The internet in the hospital is not very good and my post from last night didn't make it online until this morning, it's also huge!  Today we had some blood work done that the GI specialists ordered.  These results will likely take 24-48 hours and we won't hear anything about them today.  Hope was taken for an ultrasound in the afternoon to take a closer look at some things in her abdomen.  We're hoping to get some results tonight, but we aren't going to hold our breath.  With it being 5pm already, I'm assuming that a lot of the people we'd need to speak with have already gone home for the day.  So hopefully tomorrow will have some answers from all these tests!

This morning the cardiologist started Hope on a heart support drug.  They still don't see any sign of problems with her heart, but are doing it as a precaution.  Until the MRI is done, they have a limited view of her heart function.  They have thrown out the idea that her problems could be related to the early stages of heart failure.  This is obviously not what we want and we are praying that this is not true.  Regardless, it is safer to start her on the drug as a precaution until the MRI on Tuesday.

A few people have mentioned the potential of a weekend pass.  It would allow Hope and I to sleep at our house and come check in here each day.  They sometimes do this when they don't plan to run any tests or have any new treatments for you.  We're trying not to hold our breath but would love to get out of here for a good sleep!  My extra padding does help a bit, but it's not as good as my bed at home.

Time to Get Comfortable

At first I packed the essentials, and then I grabbed a couple of extras and now I have a lot of unnecessary things!  A nurse friend stayed here with Hope so I could go home and have dinner with my family tonight.  A huge gift as you cannot leave Hope unattended at all while she's here.  She is not on any monitors and a nurse comes in to check on her every 3 hours (unless she needs meds) and a doctor (or a group of them) come in a few times a day.  If Hope ever threw up, no one would know and she would choke until someone found her.  That would not be safe if it took 3 hours!  It’s just not possible to leave a child that cannot speak for themselves.  While at home I picked up MORE stuff that would make my new 'home' more comfortable.  My less embarrassed friend carried in my huge foam mat when I returned and helped me turn my terrible bed into a more comfortable place to sleep.  I'll need a Uhaul when I finally get out of here to take all my stuff home!

Today was another day of waiting, lots and lots of waiting.  We waited all day to see the GI specialists and after hours of discussing Hope's case, we got a report after 4pm.  The rest of the day was literally spent waiting in our room and visiting with the people we convinced to come and keep us company!  The GI specialists have ordered another ultrasound to look at more specific things and that will likely happen tomorrow or Friday.  They don't like what's happening with Hope's tummy and finally gave me the verdict, "you won't be leaving until Hope has her MRI."  Since the MRI has been booked for Tuesday, I know I'll be here for another week at least.  

Up until this point I've been really optimistic and strong, telling myself I'm not that bored and I don't need a good nights sleep to function.  I worked to convince myself that it didn’t matter if my house was getting unorganized and the beds weren’t being made each morning.  Today as I ran around my house and tried to get things ready and pack up some more stuff that I "needed", I hit my breaking point.  I managed to avoid a full break down as that won't help the situation, but I can admit that this is really hard on me and it's not that fun.  When I don’t have everything the way I would like it at home, I feel like life has spun out of control.  It’s a comfort thing for me to have my house in order.  I miss my family, I want to sleep in my bed and I can already see Sadie getting really clingy as the stability in her life is ripped away from her again.  I feel so torn as a mother and I feel really bad for Sadie, she just doesn't understand why her Mommy keeps moving out! 

God clearly has perfect timing.  My mom landed just a few hours after Hope was admitted and was able to jump in to care for Sadie each morning and get her over to the hospital so I can see her during the day.  We still have to have people take her from here for a few hours each day as she starts to lose her mind in the little hospital room.  On Friday, my mom will be flying back to Michigan and one of my best friends will be landing just minutes later!  Liz will be here until Tuesday and will be a complete answer to a prayer I had yet to speak.  It's not the visit I had planned to have with my mom or Liz, but God knew that I needed some company to stay sane and be strong for my girly.

The GI team confirmed that if Hope's problems are related to poor blood flow to her abdomen, she will receive a higher priority and would receive her Glenn surgery sooner than she would have.  This could mean we'd be back in Edmonton in September, a crazy thought!  I don't want to get too ahead of myself as we still don't even know what's wrong with Hope.

Thank you for continuing to pray for my family and especially for Hope.  Her magnets were made at the perfect time to remind you all to keep praying!  If you haven't gotten one yet...I'm pretty slow at getting things done right now, but I'll try my best!  Pray for Shawn as well, it's not easy to sit at work and be productive while your baby is back in the hospital and you don't get the minute to minute reports.  He also has a really hard time with the lack of cooking, cleaning and company that come along with a stay at home wife!  You should have seen his happy face when I served a home cooked meal that a friend dropped off for us on Monday, but we hadn't gotten a chance to eat until tonight.  We are truly blessed by our friends and can't thank people enough for feeding us and for taking care of our little Sadie and making her feel loved when we're not there.  Sadie got to have a special date at the mall with her Oma today, I know those times are important and we're lucky to have people around that love us.  Now it's time for me to curl up on my new and improved hospital bed...I'll let you know if I'm less stiff in the morning!

Could be a long haul....

We don't have a lot of answers or new things to report.  To be honest, they didn't do a whole lot today and we spent most of the day waiting in our room and trying to keep Sadie busy.  Hope is pretty sleepy and certainly not feeling like herself, she likes to just sleep in someone's arms and be held as often as possible.  We did another Xray this morning and there were no changes in the images.  Overnight, Hope's stomach grew even larger and she gained 170g.  That is not a healthy weight gain overnight as her average is 20g!

Today Hope has received a large dose of lasix and they're trying to see if they can get some of the fluid retention to come down.  We were told that an MRI will not happen this week as cardiac MRI's can only be done on Tuesday and Wednesday, tomorrow the machine is down for upgrades and repairs!  We don't want Hope to be put to sleep twice, so we'll have to wait until at least Tuesday next week for her MRI to be done so that they can look at both her abdomen and her heart at the same time.

Tomorrow morning we're going to see someone from GI to get a consult on what they feel her stomach issues could be caused by.  We'll also take a look at how well the lasix have done on the swelling and we'll go from there.  It looks like it's going to be a waiting game, and they've said we may have to stay until after the MRI can be done.  This could be a long haul at the hospital and I'm not very excited about that fact.  I could use a new DVD series to watch if anyone in Calgary has one that I might enjoy to distract me.  Thankfully my mom is here right now and able to help out with Sadie when Shawn heads out to work.

Please keep praying for Hope as there is clearly something wrong and we don't have any clear answers at this point, which limits their ability to treat her.  Pray for us all as we wait, sometimes patiently but not always, to find out what's going on with our girl.

One of THOSE Days

Last night Shawn and I stood at our doorway and watched golfball sized hail fall all around us.  The noise inside the house was crazy and although we knew our car was being damaged, there was nothing we could do.  I woke up this morning and took a look, it was certainly damaged.  I can't count the number of dents on the roof, hood, doors and other random panels.  This is a minor hiccup in life, it's the very reason we have insurance and the car still runs, life could be worse.

I packed up the kids and headed to the hospital for an appointment with the ENT doctor.  He had been called into surgery and we waited an hour before we were able to see him!  Hope disliked him quite a bit as he put a tube down her free nostril to look at her throat.  The good news was that her swelling has gone down and the voice box is looking less floppy.  We'll see him again in 12 weeks to have another look at things as the vocal chord is still completely paralyzed.

After our appointment I popped into the cardiology clinic as Hope has looked a bit swollen.  I had called them about it earlier but we couldn't find a reason to rush in and I was told to keep an eye on it, which made sense to me.  A nurse at the house mentioned the swelling to me again on the weekend and I decided to go and see if they wanted to do something about it.  After looking at it, they decided to do a quick X-ray and see what was going on and if she was retaining fluid.  The Xray was unclear and they decided to do an echo to check out her heart function.  Her heart function was thankfully looking good and we had no further answers.  So...they decided to send Hope for an ultrasound to take a closer look.  Thankfully a friend had graciously come to the hospital to collect Sadie and do something more fun with her while I bounced around the different tests with Hope.

After the ultrasound, it was decided that Hope should be admitted until they could get some clearer answers.  It showed that she has fluid in her abdomen and also inflammation.  They ran some blood work this evening to see if there is an infection of some kind in the body.  Tomorrow they will try giving her a dose of lasix to see if the fluids just need a push to get out of her.  If this is not successful, they are discussing the possibility of an MRI.  Hope would need to be put to sleep for this procedure, so we'd like to look at her heart at the same time and not have to do it twice.

During this entire process today, Hope was not allowed to eat and went 9 hours before they finally gave her some food again.  She was surprisingly patient as she waited for her food, I wonder if it felt better to have her tummy empty for a while.  She is back on her feed schedule and should continue to receive feeds until they decide on further tests that need to be done.

We're not sure how long she'll be here and I've moved back into the hospital with her once again.  I can't say that I missed the horrible mattress or inconvenience, but she's worth it!  As I went from one test to the next with her today and spent my entire day here, I realized that I didn't feel impatient.  I wanted to make sure she was ok and was willing to stay as long as I needed to.  I had a feeling I would end up sleeping over!  I'm off to try and get some sleep, I'll do my best to keep you all posted as we get any new information.

Please pray for our sweet girl and for everyone here that will be caring for her.  Please pray for wisdom as they seek to find out what is causing the issues in her stomach, and that her heart function would continue to be strong.  As for me, I'm doing pretty well with everything, perhaps I'm getting used to these surprise visits!

MRI Date!

It's official now, we have a date for our MRI, but not the one we thought.  Hope is having her MRI on August 28th in the morning at 9am.  This works out perfectly for her to be presented to the surgical board in Edmonton in early September, at that time we'll receive our surgery date.  Although we are happy to have an MRI date and are relieved that it is in August as we'd hoped, it's also something that scares us.

I don't like the idea of Hope being put to sleep and the potential for complications makes me feel a little sick to my stomach.  Shawn will likely take the morning off work and stay with us at the hospital until we know Hope is stable and going to be okay.  Please join us in praying for Hope's MRI even now.  That we'd have the perfect anesthetist and that everyone involved would be in top form that morning.  That Hope's heart and also her lungs would tolerate the procedure and the introduction of some new drugs.  We are praying against any need for her to be intubated as this would further damage her floppy voice box and complicate her breathing.  Thank you for standing with us in this.

Get a snack...pray for Hope!

Snacks, Drinks and Hope...the perfect combo in everyone's life!  I had hoped to send out birth announcements when Hope was born, I wanted people to have something to remind them to pray for her.  I never did get those birth announcements out.  Then around 4 months of age, we had some professional photos taken of Hope.  I thought about sending them out now, but realized that announcing her birth was a bit weird 4 months later.  I found the perfect solution on Costco's website that allowed me to send out a photo card with multiple photos.  It also had a space where I had hoped to thank everyone for continuing to pray for our little fighter, it was perfect.  Sadly, after hours of frustration and the photos not uploading, the store not having the same options and my patience running thin, I admitted defeat.  Then it came to me, our good friend at High Country Colour in Calgary would be able to make magnets.  It was a wonderful solution; a picture of Hope and a reminder to pray for her every time you felt hungry or thirsty.  They arrived this week and were even more awesome than I had pictured them.  Sadie put at least 100 on the fridge while saying, "Hope, more Hope, more Hope."

My challenge now is distribution, I don't exactly have the time to mail them to everyone that reads the blog and prays for Hope.  We value your prayers enough, I will send them to everyone if I need to!  I realize that many of you have started to pray for Hope because a friend or family member knows us.  I wondered if everyone who would like to put Hope on their fridge to help remind them to pray, could contact their friend who told them about Hope.  Then, if people could let me know how many they needed, I could send multiples to one person instead.  If you don't know anyone...then I'll send it to you directly.  We would be more than happy to mail them, your prayers are worth far more to us than the cost of a stamp.  They are priceless in Hope's continued growth and strength.

All about hearts!

Hope is a very smart little baby, she doesn't forget things too quickly and is very aware of where she is. We were back at the hospital on Friday to meet with the anaesthetist and to prepare for Hope's MRI.  As soon as the nurse touched Hope, she started to scream. It was as if she was saying, "I remember yesterday and I am not pleased to be back here!"  The doctor approved Hope for having the MRI done in Calgary, it would have to be done in Edmonton if her heart function wasn't stable enough.  Calgary does not do a lot of heart/lung bypass and will send babies to Edmonton that are too risky.  He was a little concerned about Hope's breathing, but was encouraging and said that they will be extra careful with sweet Hope.  We still don't have a formal date for the MRI but have a potential date of August 20th.  I'll keep you posted when we receive an official date.

The best news of the weekend...Holly was able to come back to Calgary to wait at home for her new heart.  Please continue to pray that her new heart would become available soon and that her old heart would stay strong until it arrives.  Pray also for her family as they will have a lot of appointments, and anxiety as they wait.  (to anyone who sent them a card to RMH and gets it back, I can pass it along for you, just send it to me)

Hope has been more content today, not as many tears as she's had the past few days.  It helps to have Shawn at home with me, he's so good with the kids and they all seem to behave more when he's around!  Sadie has been sticking close to Daddy's side all day, she had a melt down when he went away for a bit.  It is such a blessing to see our girls love their dad and want to be close to him, I hope that never changes.

I signed up this week for a 5km run.  That doesn't sound like a big deal to the runners that read this, but I don't think I've ever run a full km in my entire life!  It's a fundraising run for Heart Beats, they're an awesome organization that help families with children who have CHD.  I'm forming a team that will run for Hope, Holly and Lincoln.  If you live in Calgary and want to join, let me know and I can send you all the info.  If you'd like to make a donation to Heart Beats in honour of my run, simply go to runningroom.com and select 'giving' and search Amy Koslowski.  I'm dreading it, and looking forward to it at the same time.

My week of too many appointments is finally over, I've been a bit of an emotional wreck.  Please pray for a better week ahead.  I have been feeling really overwhelmed and on the verge of tears constantly.  Hope's blood thinner levels are border line still, continue to pray that we would get them under control to keep her from clotting any further.  Thank you for caring.

Cardiology Visit

Today we had Hope's monthly cardiology appointment at the hospital.  We were happy to hear that her heart function is still looking good on the echo and all the surgical corrections are holding well.  Her strider is still very present and causes her to labour quite a bit while breathing.  The cardiologist was reassuring that this is not causing any distress on her heart and she is tolerating it well.  He did caution that if she were to get an infection of any kind, that it would push her over the limit and could be very dangerous for Hope.  Please continue to pray that Hope would stay totally healthy and germ free until her body is ready to handle an infection.

Hope also had blood work done for the second time this week as her blood thinner levels were too low to keep her clots in check.  We haven't heard back but I'm assuming the higher dose of blood thinners will get that back under control and she shouldn't have to be retested for another 2-4 weeks.  Both times we visited the lab this week, we had the same technician.  She was amazing, she got Hope's vein on the first poke and was very quick.  That is not an easy task with Hope's tiny veins and I was so excited to not see her suffer for too long.  Praise the Lord for that awesome victory.

Hope was not a happy camper during our visit to the hospital today.  She screamed through the entire echo, we even had to take a break to let her get her oxygen levels back up.  She screamed through her weigh in, blood pressure and physical exam.  She screamed so much through the first 2 hours of our appointment, that she slept through the exam with the cardiologist!  These appointments are not only difficult for me to get to with our schedule and Sadie, but they are also terrible for Hope.  She is absolutely terrified in the hospital and knows that she is often "hurt" while she's there.  Please pray that I would be able to comfort her during these stressful times and make her feel safe.

When we finally headed back to the car today, 3 1/2 hours later, Hope threw up all over herself from her constant screaming.  I didn't want to make her angry by taking her out to change her and get her cleaned up, so I popped her in the car and drove home with her covered in vomit and soaking wet.  As I expected, she fell asleep as soon as I started to drive.  I'm thinking the carseat could use a good clean, maybe I'll get around to that next year!

A new dilemma in our house...Sadie has started to shove things up her nose!  So far it is just small pieces of kleenex or toilet paper.  Today I had a friend pin her down while I went up her nose with tweezers to pull out these masses of tissue.  She had been really grumpy all day and I assume it was from these masses in her nose.  I don't even think they were from today!  I did manage to get it all out, I hope so at least.  The last thing we need is for Sadie to end up in the OR with something lodged up her nasal cavity.  Please pray she was traumatized enough today from the extraction and will remember the pain when she considers shoving something else up her nose.  I'm pretty sure the obsession with her nose is a result of Hope's feeding tube.  She comments on it all the time and asks to have one!  She asked me so many times one day, that I attempted to put one in and show her how much she wouldn't like it.  I was barely in her nose when she changed her mind, they weren't as cool as she thought.

The nice part about the cardiology clinic visits is the care we receive.  Anyone who has been following along from the beginning may remember when I took Sadie for her echo.  I commented that all the other parents there seemed to know the staff in the clinic very well and had a relationship with them.  The staff are very sensitive to the journey heart parents are on and are so understanding.  I have been amazed at the things they pick up on, not just with Hope, but with the emotional toll this all takes on us as parents as well.  I am truly thankful for the team that works with Hope and feel blessed to have people that care about our family as a whole.

Tomorrow morning we head back to the hospital to do our pre-op appointment for Hope's MRI.  She will be put to sleep for the MRI and the anaesthesiologist needs to see her before this happens.  We were hoping to get an official MRI date tomorrow but have been told that it might take another week before we get that.  We are really hoping for a date in August and would love for you to pray that we can get a date as soon as possible.  We won't be able to receive a surgery date until after the MRI, so much is up in the air until we have that surgery date and we are waiting, but not patiently!