A Sleeping Beauty

Sleep is important and babies need a lot of it, but when we sleep for 48 hours and are difficult to wake up, there's something wrong.  Hope continues to sleep all the time.  She is slightly more alert today when she is forced to wake up by the doctor or nurse moving her a way she doesn't like.  I held her for a brief period of time, but once again she cried out in pain and I had to transfer her back to bed.  I'm fairly sure it's the fact that both sides of her body have uncomfortable things coming out of them and she can't get comfortable while held.  On her right side she has the PICC line that is almost in her elbow pit and her arm is taped to a board.  On the left side she has an IV in her scalp and a chest tube between her ribs.  She has every right to be uncomfortable right now.

The doctors are certainly worried about her, but are at a loss for what to do.  Last night one of the cardiology residents slept at the hospital in order to be close by in case something with Hope's condition changed.  This resident has been a complete gift through our entire time in Edmonton.  She was briefly down in Calgary and came in to see us in the PICU after Hope's bleed.  Just seeing her face was a comfort in a difficult time.  I truly trust the staff that is on and do not feel in any way that they are being flippant with Hope's condition.  They have tested everything they can, looked for reasons for her to be like this and are coming up empty.  We simply have to wait for it to improve or to start creating symptoms that will tell us more.

Hope's left lung continues to drain fluid.  At this point she has drained over 600 mls of fluid from it.  It's good to get it off, but if it continues to drain constantly, they will be forced to stop feeding Hope.  At this point Hope is taking FULL feeds to her stomach!  It's absolutely crazy that this is happening and we praise God for this miracle.  If the fluid continues, the next step is to stop feeding the child in order to force the lungs to dry up.  Having watched a roommate of Hope's go through this, I am praying that Hope does not need to experience that.

We are still scheduled to go into the OR on Sunday.   There is no guarantee that it will happen, but we are planning accordingly.  Hope is on a different blood thinner in preparation for the surgery and they are working to make her as strong as possible.  She continues to receive full feeds as well as TPN (the liquid nutrients).  Being so small, they decided the added calories and nutrients may help Hope put on a little weight or at least maintain what she has.

Many of our friend's children continue to struggle.  The little boy I spoke of last week (Joel) is still in the PICU and struggling.  Little Jaydyn was re-admitted to hospital today and is struggling to breath.  I value the other families deeply as they truly understand what you're going through.  I find it impossible to not fall in love with their children and hurt with them for their babies as well.  It's a constant reminder that there is suffering all around, we need to support one another.

Thank you for continuing to pray for Hope and for our family.  I'm really looking forward to Shawn and Sadie coming back up tomorrow.  Please pray for safety as they travel and that I'd be able to balance my time with each of them.

Politics

It appears we are not able to have a drama free day!  Today was once again full of drama.  In rounds we were told that Hope's surgery for tomorrow is cancelled.  I was obviously upset about the change and asked to speak with Dr. Ross directly.  The cardiologist agreed to have Dr. Ross come see me and felt that it might help.  Dr. Ross was wanting to wait to get a second opinion from Boston and Toronto.  Although this sounds wonderful, he also said he thought they would tell him what he already knows.

Shortly after this the nurse came to tell me that the OR had called and confirmed a surgery time of 7:20am tomorrow.  I was thrilled!  Then 10 minutes later the OR called to cancel that time.  The roller coaster never ends with this child!  Dr. Ross came by at noon to say that he was too busy to sit down and properly talk about things so he would be back at 4pm.  He arrived early at 2:30 and sat down with me to talk about Hope's surgery.

An emergency case came up during the day and Hope's spot was no longer even available, she would have been bumped regardless of Dr. Ross' hesitation to do the surgery.  I voiced Shawn's and my opinions about waiting to do the surgery.  We want to do the surgery while her PICC line is working, and while her body doesn't have an infection.  This surgery is the only thing keeping us in Edmonton and apart as a family.  Once this is finished, there is nothing to keep us from being transferred back to Calgary to continue Hope's care there until she can go home.

Dr. Ross agreed with all of my concerns and felt that Hope could benefit from going into surgery.  Unfortunately he has 10 other families in the same position.  He was clearly angry about the position he is in, not at me, but at the government.  I totally agree with him and am a witness each day to how bad the situation is.  The Stollery has the highest success rates for cardiac surgery in North America, but you would never know it.  The richest province in Canada is home to one of the worst PICU's you've ever seen.  The infection risks are crazy high because the beds are feet apart!  They need a new hospital in Edmonton desperately.  Apparently there are planned budget cuts for the Intensive Care in order to open more clinics.  This is going to be devastating for families like ours.

He has agreed to come into the hospital on Sunday, even though he's not working, in order to operate on Hope.  This is obviously still dependent on a PICU bed being available and other logistics.  If this date is bumped, Hope will be taken at the first available slot next week.  We are praying that it works out for her to go on Sunday and that we're not waiting until next week.  It's sad to think that so many heart children are left untreated for a time because of lack of nurses, bed availability and OR time.  One day I should go back to school and get into politics, I have a lot to say!  We all think tax cuts sound amazing, until we need services and the government can't afford to provide them.  I would surely pay higher taxes in order to have my child receive the care she needs.

After sitting down with Dr. Ross I asked to see the cardiologist.  Hope had been sleeping almost the entire day.  I was worried that something was wrong, she was too settled, too sleepy and lethargic.  They agreed that something was weird and drew more blood from Hope's PICC line.  Everything came back normal.  At 4:30 she continued to sleep and was slow to respond.  The doctor was getting more worried, as was I, and ordered a CT Scan of Hope's head to make sure she wasn't bleeding.  By the time Hope had the CT and the results were read and reported back to me, it was 7:30pm.  The resident stayed late just to give me the results, it was truly compassionate as she knew we were worried.  The scan was all clear.

One of the ICU doctors came up and suggested that with her liver issues, perhaps the anesthetics from yesterday are lingering longer than they should be.  This is possible, but after 15 anesthetics it's hard to be sure if she's doing something new or if she is showing signs of a problem.  Seeing as no one had any new ideas of what to look for, Hope will have to show us.  If she perks up tomorrow we'll know that she was just sleepy.  Please pray there is nothing new going on.

Please also pray for my mom.  She was extremely tired all day today as well and we worry she could be getting sick.  She went straight to bed and is hoping that sleep will cure her.  I figure if we get the masses praying, she may wake up feeling like a new woman!  I really need the support and would struggle to be alone at the hospital and to know that my mom came all this way and has to be sick without the comforts of home.

Today was an incredibly long day.  I cried as I pleaded with our surgeon to operate on Hope.  I sat for over an hour to find out if my child was bleeding from her brain.  I planned to leave the hospital at 5 but left closer to 8.  I'm tired, I need to get back to Calgary where I have a more normal routine going and can be with Shawn and Sadie.  I had told Sadie yesterday that she would see me tonight, and once again she went to bed without kissing me goodnight.  This is not easy and we would not have the strength to continue without the power of God and the prayers of his people.

Chylorthorax :(

I'll need to be creative in order to fit the craziness that was today into one blog post!  I knew it was not a good sign to see the X-ray machine over Hope as we walked in.  The nurse said, "I'll explain in a minute."  She pulled me aside and explained that Hope was labouring to breath and that they were quite worried about her.  We were quickly told that her left lung showed a large amount of fluid and a small amount on the right as well.  Hope was having this problem in Calgary and the doctor tapped her left lung to remove the fluid a long time ago.  The fluid did not look like Chylothorax, but was sent away for testing.  With a great deal of Lasix, the fluid was removed and I never heard anything about the test results being noteworthy.  FAIL.  Apparently the results showed that it was Chylothorax then, but it was missed by the doctors and therefore never treated.

Chylothorax is a side effect of heart surgery.  It is apparently very rare, but not in my world.  I live with all heart families each day and tons of them have it!  It is essentially leakage from the thoracic duct into the lungs.  The fluid needs to be removed in order to make it easier for the patient to breath.  Knowing that this is a side effect of heart surgery, Hope has had this since November.  It helps explain why we've had such drama with her feeds.  The treatment of it requires a completely fat free diet.  Hope's current feed has a high level of fat in it, so she will no longer be able to have it.  She is being switched to a fat free feed that we have tried, and failed at using, once before.  PLEASE pray that her body miraculously accepts this feed if Hope has Chylothorax.  Although the doctors are 99% sure that she does, we are waiting for lab results from the fluid to be sure.

Around lunchtime, our miracle vet doctor came in to put an IV in Hope.  He was able to get one in her head, after shaving more of her hair off.  When I got back to the room, I often leave to avoid having my heart broken once again, I found some tape on her bed.  The tape was full of her hair!  I almost broke down knowing that it had been removed from her head and had worked as a waxing strip to tear her hair off with it.  This was obviously not intentional by the staff and explains why they decided to shave some of her head.  It still breaks my heart to have her hair shaved.

The head IV was essential because Hope's magnesium levels are dangerously low.  The oral magnesium they were giving her was giving her terrible diarrhea and not working.  This is incredibly dangerous for Hope, as low magnesium causes irregular heart rhythms and could easily take her life if not treated quickly.  She is already receiving magnesium boluses through the IV line and will continue to receive them every 6 hours until her level stabilizes.

After this drama was complete, Hope was taken for an ultrasound to see what access points were available for a PICC line.  We know that IV's are short lived with Hope and something more permanent was required.  When this was discussed at morning rounds, we were told that if they had to use her jugular vein in her neck, a clot would be deadly for Hope.  This is the only source of blood to Hope's brain currently.  The other side is already clotted off and this is truly our lifeline.  They thankfully found a potential vein a little further down on the right arm.  This is still incredibly dangerous if it clots, but we'd still have a slight chance of saving her.

At 2:30 Hope was brought down to be put to sleep and have a chest tube put in her left side.  This was to drain the fluid from her left lung and will be in for a few days at least.  They were also going to attempt to get the PICC line, but were unsure if they had enough OR time.  Hope was clearly not previously scheduled for these procedures.  Hope came past us 30 minutes later with her chest tube in, but they had not been able to attempt the PICC.  She was taken to recovery and I was sent back upstairs.  5 minutes later the anesthetist walked in and said, "Miracle of all miracles, an OR just opened up and we are taking Hope now to put her back to sleep and attempt the PICC line."  This was amazing news!

Already exhausted from the emotions of the day, my mom and I had not moved when 2 minutes later a nurse walked in.  We were told to run down to the radiology desk as I had not yet signed consent for this second procedure.  It was a bit disorganized but we eventually found the doctor and I was able to sign consent.  Then the waiting continued.  Thankfully this time I was not in ear shot of the OR.  The first time, I had to listen to Hope scream until the medications took over and she went to sleep.  It was a horrible form of torture, but I couldn't bear to get up.  I just wanted to know that she was no longer screaming and waited for what felt like eternity to hear her voice quiet.

At 4:30 we got word that Hope was back in recovery and doing well, the PICC had been a success!  We are praising God for this PICC line and also begging Him to not allow it to clot.  The doctors have been very honest today, Hope is up against a lot of hurdles.  We have much to overcome before she is truly stable, but the fight is not over until God brings her home.

The cardiologist came to see us around 6:00 to let us know that Hope will likely be having her heart surgery on Thursday, this Thursday.  If she could have gone home to gain weight, they would have preferred that.  Since it does not look possible at this point, we are going to move forward with the heart surgery.

I think the most difficult part of today, was hearing Sadie in the back of my head.  I had told her last night that Mommy and Hope would likely be coming home later this week.  She was so excited, she squealed and said, "baby Hope all better?"  It broke my heart to know that I wouldn't be able to come home, or bring her sister back to her house either.  Sadie is so longing to have us back together as a family and is getting better at expressing it as the days turn into months!

I'm exhausted, I have never felt like I needed a vacation more.  This journey is exhausting and my reserve energy is running low.  I'm so tired of getting excited, and shortly after being devastated by bad news and set backs.  I am truly hoping that this surgery makes a world of difference and that each day after, we are only waiting to heal before we can finally go home as a family.  We are still in need of your continued prayer.

Escaping Hope's Room

We are now at 18 mls an hour!  This deserves celebrating as it is getting us closer to potentially taking this little lady home.  We would love to have Hope at home with our family, even though we'd have to bring her back in a month for her heart surgery.  I'm skeptical that she would be strong and healthy enough to stay at home, but I'd take one night at this point.  Hope has had 2 spit ups and one throw up in the last 24 hours, this is minor in comparison to her history.  We continue to hope and pray that she will tolerate her feeds.

The blood cultures came back and are officially negative!  Praise the Lord for that result, as we don't have a line to run antibiotics.  Unfortunately, the results also showed that Hope's magnesium levels are very low.  They need to give her some supplements of magnesium, but don't have a line to put them into her blood.  As a result, she will need to take them orally/through her feeding tube.  This is known to cause diarrhea, something we are already battling.  Please pray that this will not dehydrate Hope as we don't have a way of increasing her fluids.  Many people have asked me if Hope could take probiotics to help with her stomach issues.  In short, probiotics have a potential to kill Hope.  The doctors are not even willing to consider them as the risks outweigh the benefits, I agree.

The most exciting part of today, was taking Hope out in a stroller for an outing.  Now that she is off oxygen, we were able to walk around the hospital with her for 15 minute intervals.  It felt so good to get out of her room and to stimulate Hope with some new sights.  She absolutely loves it and stays wide awake the entire time.  With all the excitement of going for a walk and the need to digest her food, Hope is napping more frequently throughout the day.

I got to be a part of Sadie's bedtime routine over Skype tonight.  It's so nice to feel like I am still a part of her day from so far away.  Thank you for continuing to pray for our family as we raise our girls, often in different cities.  Thank you for continuing to pray for Hope as well, we have seen so much progress in the last couple of weeks.  We still have setbacks, but overall we feel that every step forward should be celebrated and that God should receive the glory.

50% Good and 50% Bad

Today was split, the morning was not very good, and the afternoon was not very bad.  Hope's PICC line continued to leak and was no longer useable at all.  They had to pull the line and in doing so, found that it was no longer even in her vein.  After the line was pulled, her leg was found to be leathery and firm.  Please pray that this fluid would quickly leave her body and not cause any damage.  The cardiologist, who also does heart caths and is great with IV's, tried to get an IV on Hope 6 times.  None of them were successful and Hope fell asleep in exhaustion when they finally gave up.

At noon an anesthetist was brought in to attempt an IV.  He managed to get one in Hope's right arm on his second attempt.  They began running fluids for a couple of hours and then started her IV antibiotics.  After a mere 3 hours, it was clear that the IV was failing and the line was pulled.  We are now without access to Hope's body and we know that access if extremely difficult to find.

However, the afternoon was amazing.  For the first time since we arrived in Edmonton, Hope was settled.  She has only been happy while sleeping for the last two weeks.  It makes me wonder if the PICC line was causing her pain and making her uncomfortable.  I am praying she will not have any lines put it and that they wouldn't be necessary.  She seems to be so much happier without something sticking out of her body!

It takes 48 hours for the blood cultures to truly come back negative.  They are given that long to grow bacteria.  Hope will reach the 48 hour mark at 6 am tomorrow morning.  If her cultures are negative, we will not need line access and can leave the poor girl alone.  Our other problem is feeding.  At this point, Hope is receiving only 8 mls an hour of feed into her stomach.  She needs to receive 24 mls an hour in order to avoid the use of TPN.  We are moving her up slowly, please pray that we have success in her feeds.  This would be the first time Hope has tolerated full feeds since August, we need a miracle!

If Hope can tolerate her feeds, we can bring her home to await her next heart surgery.  If we cannot get her to feed, the heart surgery is a must at this point as she won't grow in the hospital.  Please pray for the doctors as they make decisions about Hope this week.  Please also pray against infection and the need for antibiotics.

I don't know how long I can handle our family being in two cities.  As I loaded Sadie into the car with Shawn this evening, she said, "I don't want to go home without you.  Why can't you come?"  I explained that I needed to be here for baby Hope and she said, "but baby Hope isn't even at home with you here!"  I cried as Shawn and Sadie pulled out of the driveway and started the drive back to Calgary for another week apart from Hope and I.  I would love to make the drive back to Calgary this week with Hope in my backseat!

The Hope 180

I have decided that a 180 is too simple of a term for what Hope does.  She needs to have her own phrase to describe the antics that she pulls on my heart.  I have decided to call it, The Hope 180.  It is not a complete turn around because first you have to pretend you are doing much better, then make a huge turn around and do the opposite.

This morning we got the call from my mom that Hope was not doing well.  Her work of breathing was up, she'd thrown up most of the night and was no longer being fed. Her oxygen levels were poor and her heart rate was high.  The cardiologist came on the phone and told me she did not look good.

When Shawn and I arrived at the hospital we could see that she was not as strong as she had been the day before.  The PICU had already been up to see her and they were talking about whether or not she needed to be taken down there.  Hope was no longer looking like she may be headed home with us, some things are too good to be true.

What happened??  At this point they aren't sure and we're looking for answers.  They have 3 possibilities of what went wrong.
1. Hope aspirated on vomit in the night and has fluid trapped in her lungs as a result.
2. Hope's line is severely infected and has passed into her blood, causing her to be septic.
3. Hope had a rare reaction to the blood transfusion and it should resolve in 24-48 hours.

Hope's X-ray does not look good, but I still don't feel that she aspirated.  It simply doesn't fit with what I've seen her do and how she often responds to vomiting.  I'm willing to admit that I could be wrong.  I feel like the line infection makes the most sense.  The doctors took blood from Hope's neck this morning and sent cultures that should be back in 48 hours.  She was started on two broad spectrum antibiotics as well.  She appeared to improve by the afternoon and I wonder if the antibiotics are already touching the infection.

Our major issue once again, is the PICC line.  We are now in need of access to Hope, again, in order to run the antibiotics.  We may also need to start TPN if she is not able to tolerate her feeds.  There is a question of whether she has feeding intolerance, or was only vomiting because of being sick.  Time will tell I guess.  The PICC line is already leaking and cannot have TPN run through it as it would cause a burn on her skin.  We need a new line and this issue will likely be addressed on Monday.  There is no one on this weekend that would consider touching Hope, it's simply too dangerous at this point.  Hope is already so skinny, I can feel every ridge of her spine as I rub her back and see every rib.  Even a weekend without proper nutrition is not good for such a thin baby.

Please pray for us.  We are so discouraged.  Hope (not the person) is a dangerous thing, it can be the strength that carries you through, but can also be so painful to have it taken away.  There is still a chance that the infection, aspiration or blood reaction will clear and we can get back on track to take Hope home.  It's just a whole lot less likely.  Is this the answer to our prayer and the way to push us to have Hope's surgery?  We are not sure quite yet and will likely have to wait for the cardiologist to comment on that Monday morning.

Today I watched a mother grieve after being told there was nothing more the doctors could do for her son.  We know that we are so close to that place with Hope and I cried seeing her pain and knowing that it could easily be mine.  I want a miracle for them, a miracle for Hope and my family back together again in Calgary.  We need a multitude of angels to storm the ICE here at the Stollery Hospital.  We want to see God move in a powerful way in the lives of these kids and we believe He is able.  Would you please pray that this would happen?  I would love to have a picture of Hope with this little boy in 5 years.  A true testament to the medical community that miracles happen, even when there is nothing they can do.

A Miracle in 2013

Hope was taken down to the OR at 11am this morning.  The liver specialist in Edmonton and the one in Calgary told us that the varices would take numerous treatments to heal and were a grade 4.  The fact that we waited so long to treat them this time was potentially risky, she could have had another large bleed.  Around noon the GI doctor came out of the OR with pictures from the scope he had just put down Hope's throat.  The varices, which he showed us, were there once again.  They were now only a grade 1 and were not even bad enough to inject.  This is truly a miracle and not what anyone expected, other than those that believe in a powerful God!

Hope has varices, yes.  These varices are nothing like they were the first time and should be so much worse.  She will not have to go in for another look for 2-4 months.  We were originally told that she would need to go in every 4 weeks for 6 months.  We are praying that Hope's liver clot is improving and that this is evidence of another miracle happening in the portal vein of her liver.  A mom can certainly hope for the impossible when it comes to her baby.  Especially a baby that she entrusts into God's care, the author of impossible.

Another thing that needs to be mentioned is Hope's ascites (fluid in the belly).  This was a major issue in the summer and we were told that it would take a few years to improve.  This fluid is currently VERY minimal in Hope's abdomen.  It has improved in a major way and is no longer one of our challenges.  This is a sign that Hope's liver is growing new veins to get the blood where it needs to go and will give her more time.  Praise the Lord!

After her procedure, Hope had another reaction to the anesthetic.  She turned completely red like a tomato and was very lethargic.  The same reaction we've had numerous times after anesthetic.  An hour or so after some Benadryl, Hope's body pulled through and the reaction subsided.  I believe the difference between the last anesthetic and this one, was the Benadryl.  Last time I asked the anesthetist to give Hope Benadryl right after extubation.  That appears to be the difference between the last two procedures and her bright red face.

This afternoon we were thrown a huge curve ball.  The cardiologist pulled me aside to talk about next steps for Hope.  Although this doctor is new on the scene, I have a deep trust and peace about him working with Hope.  Something that only the Lord could put into me and I'm assuming it was for our conversation today.

Our surgeon, Dr. Ross, met with Dr. Kantor and another cardiologist that we trust and value her opinion.  They looked at the pictures of Hope's aorta from the echo, CT Scan and heart cath.  They are not firm on their decision and have once again asked us to decide what to do next.  They feel we could wait a month for Hope's heart surgery, but are also willing to do it now.  Here's the catch...they feel that waiting at HOME may give Hope a bit of time to grow and develop.  This would give her a better chance to pull through the surgery well and heal more quickly afterwards.

They are recommending that if Hope can tolerate these feeds and get off, or to a minimal level on her oxygen, that she be discharged next week.  She would be discharged from Edmonton and we would drive Hope back to Calgary to live in our house until her surgery!!  They are not positive that this is possible and would wait to see what Hope's little body does and let her decide.  If she is not able to tolerate her feeds and cannot get off oxygen, we would go in and have surgery next week or early the following week.

If we get Hope back to Calgary, but she doesn't do well at home and is re-admitted to the hospital, we would be brought back to Edmonton and she'd have surgery ASAP.  We are not sure that Hope is strong enough to come out of the hospital and be at home, but we're thinking we may try.  Shawn is currently driving up and we plan to sit down and have a good discussion about what is best for Hope when he arrives.

If Hope were to go home next week, we would be brought back in a month to have a sedated echo.  If the aorta continues to look kinked or is looking worse, she'd go in for surgery at that point.  If by some miracle, which we know is possible, the aorta looked better, surgery would be delayed once again.  Our ultimate dream would be for Hope to NEVER have this extra open heart surgery.  Our God is able and we pray that His plan is for Hope to come home and not need this surgery.  If that is not His plan, we trust that His ways are greater than our own and that He will carry us through that difficult journey.  It does not make the pain any less, but it gives us the strength to walk through it.

One more thing...Hope's PICC line is leaking.  As a result, they have decided to give her a blood transfusion this evening before pulling the line tomorrow morning.  Please pray we can remain off TPN and do not need to get a new line.  We would love our friends to give blood as well, Hope has sure used a lot of it and we appreciate the sacrifice of every donor.

We are anxiously excited if this works.  At the same time, we do not want to minimize the severity of Hope's condition.  We still have a lot of hurdles to overcome and are still in need of your continued prayers.  Hope's liver clot is a major issue and life threatening.  The kinks in her aorta and the need to reconstruct it is not good, we pray her heart grows in a healthy way and that she can pull through another open heart surgery if she needs it.  We are also praying that the varices continue to stay small and do not get worse.  This way we are at a lower risk of another major bleed.

As you can see, today we have much to praise God for.  We also have many things to pray that God gives us wisdom for.  Would you join us in asking God to allow Hope's body to decide what we should do?  We pray that if she needs this surgery right away, that her body would reject her feeds and her oxygen rates would drop.  If she is not meant to have the surgery, please pray that she would be home and living with our family by the end of next week.  Hope, it's time to show those doctors what a miracle is!!

Food in the Belly

Another day of firsts for Hope.  This morning her NJ (feeding tube that goes into the intestine) was clogged and no longer working.  The doctor decided we should put in an NG (tube to her stomach) and see how she did.  To be honest, I thought he was completely crazy and that this idea was terrible.  I decided not to speak up, I guess I figured Hope would show him it was a terrible idea and there was no need for me to say anything.  They started feeding Hope at 9am.  She received 5mls an hour for 2 hours and did wonderfully.  So we increased to 10, then 15, then 20 and finally to 24.  At 5pm Hope began to retch a little and was appearing to struggle.  This is to be expected after not receiving a full feed to her stomach since August!!  We are praying that by some miracle this little anomaly is able to tolerate her feeds again.  This is the pediatric complete formula that is actually real food blended into liquid.  If this works, we would have nothing to stop us from going home after Hope heals from the heart surgery!  I'm trying not to get my hopes up, but we are closer.  Today was proof that the impossible is possible!

Tomorrow morning at 10am Hope will be going in to have her varices treated.  We are praying that miraculously these varices will be gone or barely there and not in need of injection.  If that is the case, Hope can have her heart surgery next week.  If this is not the case, she'll need to wait at least 10 days to have the heart surgery.  I guess 10 days isn't a life time, but it's another 2 weeks I would spend away from Shawn and Sadie.  I'm praying for a miracle and believing that our God is able.

Holly did very well today and her biopsy showed zero rejection!  That means her heart is doing well in its new body and is healthy.  What a huge relief and amazing blessing.  The journey of a heart family is difficult.  Today I watched as a family near us was struggling.  These little kids are unpredictable and things can change quickly.  It's sad to see them in pain and fighting for their lives.  I have to remind myself that there are also children with broken hearts that live at home with their families.  Children that are able to play and go to school.  I continue to hold onto this dream for Hope and believe that one day her and Sadie will run through the yard together.

Hope Gets a Full Meal!

Today was a roller coaster of emotions.  Hope was slightly less grumpy in the morning and slept a bit better than she had the previous night.  She is retching often and was having a lot of diarrhea through the morning.  Rounds started a bit later this morning, but our favourite nurse practitioner was back!  She is just covering for the next two days.  Still, it was so wonderful to have her back and feel that sense of familiarity as well.  In the morning we were told that they would take Hope on Thursday if they could to check the varices in the OR.  If they looked good, she would have her open heart surgery on Friday. I called Shawn and we began planning our next steps with this plan in mind.

Not long after, we were told that if the varices were there at all, they would be treated and this would delay our heart surgery by 10-14 days.  Shortly after this news, I ran into the GI doctor downstairs.  He told me that Hope would be going into his OR on Friday.  I told him that we were having a heart surgery on Friday and asked how that would work.  The cardiologist came back in to see us in the afternoon and confirmed that the varices would now be done on Friday and the heart surgery would be rescheduled.  If they do not need to inject the varices, if they aren't that bad, she will be rebooked for next week.  If they are treated (this is more likely), we will be waiting at least 10 days to get the heart surgery.  Now the question is...do we have to wait in Edmonton?  Hopefully by Friday we will have some answers and can make decisions and do some planning.

Today was also a reunion with other families.  While downstairs to grab some lunch I ran into the parents of a family we lived with for many months at RMH.  Their son passed away shortly after we left for Calgary in November.  It was wonderful to hug them and to let them know how sad I was to hear that their little man was no longer with us.  Their daughters had been such a gift for Sadie at the RMH and kept her busy most weekends.  The mom then told me that if she had to do it all over again, she would have never left her son's side.  I walked away ready to cry and overwhelmed with guilt that I wasn't strong enough to sit next to Hope 24 hours a day.  Thankfully I ran into Angela, Holly's mom, who was in Edmonton for a biopsy.  It was perfect timing and a needed distraction.  Holly is having a heart cath tomorrow morning, please be praying for her.  She is doing very well and we're hoping that everything comes back looking perfect!

The most positive thing about today that deserves to be celebrated only happened an hour ago.  At 6pm Hope's TPN, liquid nutrients, was turned off!  For the first time since October 24th, Hope is on full feeds!  She is not enjoying this and appears to be quite upset but should adapt and will benefit from eating in the long run.  I pray we can stay on full feeds and make some progress with the intolerance issues as well.  The doctor is already talking about getting her back on bolus feeds (large volumes in a short period of time).  Please be praying that Hope will finally gain some weight.  She has continued to lose weight since our arrival in Edmonton and is very skinny right now.

The days are long and often very hard.  Hope's constant fussiness and crying can begin to tire you as the day continues.  Over all, I know that we are blessed to have her continue to fight for her life.  I also see the families around me and know that we are not alone, so many parents fight for their children everyday and are tired too.  Thank you for continuing to care and for praying for Hope.

A Mother in Waiting

I started the day fairly optimistic and decently patient.  Hope was taken for an ultrasound on her abdomen and spent most of the entire day screaming or sleeping.  She was incredibly thirsty and wanted a wet sponge to quench her thirst.  Sadly she was not allowed to have any water as we waited for her Varices procedure to take place.  Hope was beyond tired after not sleeping last night.  The nurse said she cried through 80% of the night and was miserable.  Broke my heart to hear this.

By 3pm my patience had long disappeared and Hope's tears were daggers to my heart.  I wanted to give her water so badly and needed to see something happen.  I started harassing doctors and nurses to find someone that could get things moving.  They continued to assure us that Hope would go into the OR at some point.  Sadly, at 5pm they finally let us know that Hope's surgery was officially bumped.  We began giving her water immediately and started her feeds again.  I hate wasting an entire day at the hospital.  If we'd gone back to Calgary she would have had her surgery today.

Just before 5pm the cardiologist came to speak with us.  Hope will have her heart surgery, although we don't have a date yet.  They are now trying to balance when to do the Varices procedure and when to do the open heart surgery.  If Hope needs to have the Varices procedure first, they will need to wait 10 days to do the open heart surgery in order to lower the risks of bleeding.  If they do the heart surgery first, there is a chance Hope will have a bleed from the Varices as a result of the delay.  We are stuck.

We have asked if tomorrow they would use a less invasive scope to take a look at Hope's esophagus.  If the Varices are not as bad as they think, we will delay that surgery.  If they are terrible, we'll know it's best to delay the heart surgery.  Neither option is ideal and it's never easy to make these decisions.  Please pray for wisdom.

We hope to get a bit more information tomorrow, at this point we have no clue what's going on.  We are not thrilled with the idea of a long stay in Edmonton.  Please pray that the Varices are not bad and that the procedure can be delayed.  That way the heart surgery can go ahead and we'll have the other procedure done in Calgary.  Please also pray that we'd find the trick to keeping Hope more comfortable.

Open Heart Surgery #3

I was happy to not walk through today alone.  My mom's flight was delayed even further last night and we ended up in bed at 2:15am!  The alarm at 7am was not a happy sound to either of our tired bodies.  Hope is always so happy to get back into my arms each morning, that makes the lack of sleep worth it.  Hope was taken down for her CT Scan in the morning and did fairly well through it.  She was able to go through it with no sedation!  We had someone come by the hospital to snuggle little Hope while we went back for a short nap in the afternoon to find the energy for the rest of the day.  In the late afternoon the GI doctor came to let me know that Hope will be having her Varices procedure tomorrow in the late morning.  Please be praying for Hope as she goes through this procedure.  Pray against any bleeding complications, reactions to the anesthetic or difficulties waking up.  Thankfully she is going to be in the hands of an anesthetist that is very familiar with her and all her quirks.

Around 4pm the cardiologist came to talk with me.  I knew things weren't going to be easy when he asked me to follow him to a more isolated location to talk.  The CT Scan showed a few kinks in Hope's aorta.  These will need to be surgically repaired and can not be done in the cath lab.  Tomorrow the surgeons will discuss Hope and decide when to do this.  The cardiologist felt that it would be sooner rather than later.  He mentioned that it could even happen in the next few days.  Hope will need to have her heart completely stopped for the procedure and will be on the heart and lung bypass machine.  This is so discouraging.

The logistics of it all stress me out on top of my little girl needing such an invasive procedure.  Shawn will obviously be coming back for the open heart surgery and will need to figure everything out with work.  Sadie now has a Nanny and we have committed to pay her for the next 6 weeks.  As a result, if we bring Sadie to be with our family, we'll still need to pay her.  Sadly we won't be able to get 40% of it from the government like we usually do if Sadie is not actually in Calgary.  Our home care nurse was set up in Calgary and spending 4 nights a week with Hope.  It takes away the hours from her as well.  I have no idea how long we'll be here and the thought of it being more than a week or two is exhausting.  How long Oh Lord?

Fresh Set of Eyes

The emotions I felt in the matter of seconds was overwhelming.  During morning rounds the nurse popped around the corner and told me that Calgary had a bed for Hope!  We would be going back to Calgary today.  As we celebrated, the doctor spoke up and told us not to get too excited.  Dr. Kantor is a new cardiologist to the Stollery.  He just transferred from Sick Kids in Toronto.  He had spoken to another cardiologist in Edmonton that we have worked with previously and truly respect.  She felt that Hope's heart cath results were more serious than we originally thought.  She did not believe it was safe to send Hope back to Calgary without further investigation.  I was told the option was ours and to speak with Shawn about it.

I called Shawn and shared the doctor's concerns.  Usually choosing what is best for Hope comes naturally.  Today, I was so tired of being away from my family that it was a bit more difficult to make the right decision.  Thankfully, Shawn was stronger than I and encouraged me to stick it out for Hope and allow her to receive the care she needed.  So we have made the decision to stay in Edmonton until further notice.

Hope should be going in on Monday for a CT scan.  We're going to look at options for her that would not require general anesthetic.  Please pray that the doctors will find a solution that is safer for Hope.  The next steps will depend on those results.  This delay is going to cause us to miss Hope's varices procedure on Tuesday in Calgary.  As a result, Hope will be having that procedure here in Edmonton on Tuesday or Wednesday likely.  We don't have specific dates at this point.  

After meeting Dr. Kantor this morning, I felt that he could be an extremely valuable addition to Hope's care.  I sat down and asked him if he would be willing to go through Hope's file and give me an outside perspective on her.  He agreed to do this and spent the morning going through her file.  In the afternoon he came back to speak with Shawn and me.  (Shawn drove up in the morning with Sadie for the weekend).  

Our meeting was extremely encouraging.  Dr. Kantor feels that Hope is more likely to survive her childhood than many others have suggested.  He feels that Hope needs to get out of the hospital environment and back into our home as soon as possible.  Her growth is vital to her healing process and she simply does not gain weight while in hospital.  This is a common complaint from families and is difficult to do anything about.  This gives me a renewed strength to push to get Hope home.  We have a lot of hurdles, but it is a gift to have someone believe in Hope and encourage us to keep pushing.  

These delays and the thought of going through more surgeries without Shawn was really difficult.  I finally did something I've been working very hard to avoid.  I called my mom and asked her to come back.  I feel bad taking her away from her life once again and having her drop everything.  I don't like the idea of my dad coming home to an empty house either.  Our family has been amazing through this journey and has been an incredible support on Shawn's side as well as my own.  My mom will arrive tomorrow night and I find this very comforting.  

Please continue to pray for our family.  We have some wonderful volunteers coming to take some time with Hope tomorrow so I can enjoy Shawn and Sadie while they're still here.  Sadie is still limping and will be heading back to the doctor next week.  Please pray that her leg would completely heal before they need to re-cast her.  It will be difficult to spend the week away from Sadie again, please pray that I get home before next weekend!  If they find something serious with Hope's aorta, they may need to do another open heart surgery.  I need a serious dose of strength to get through that - I'm praying that is not the case.  

A Note from Nursey!

Here is a blog from Hope's special nurse.  She may be our home care nurse, but she is willing to see Hope anywhere!  I am still up in Edmonton as there was no beds available for Hope in Calgary today.  The doctors are looking to transfer us tomorrow and decided the CT Scan could be done in Calgary.  Please pray they find Hope a bed tomorrow.  I really miss my family.

Hi Everyone!

This is Hope’s best friend (or so I like to think so)!  I have had the privilege of knowing Hope for a while now, and through her, I became friends with her wonderful family.  I was so very lucky to be able to go to Edmonton with her mother, Amy, this week.  I was excited to get out of Calgary and to be there for my two special friends this week!

I hang out with Hope a lot.  I know what she likes, and what she doesn’t like.  I know when she is in pain, when she is uncomfortable, when she is tired and when she is happy .  I know she LOVES to be in her vibrating chair AND I also know that you have to bounce her with your foot while she is in it.  I know she loves her ‘soother game’ (to spit out her soother after 10 seconds and make you dip it over and over again in sterile water, because her mouth is so dry) and I know she loves wet swabs in her mouth too.  I know she hates dirty diapers more than anything and I know she loves to be held (but only if you are dancing her, patting her bum, or bouncing her on your lap).  I also know if Mommy is in the room than she will want nothing to do with you!  I also know she hates to be fussed over or touched too much.  This is due to her anxiety from all her assessments, pokes, and procedures that she goes through everyday.  I am pretty familiar with all her meds, feeds, infusions, procedures, vitals, dressing changes, and her medical history.  I thought this week with Hope would be a piece of cake for me!

Well, I was wrong!  The days in the hospital were long.  Hope was in the ICE, a room with four children in one room with two nurses in the room as well.  It was reassuring to know that the nurses were RIGHT there when you needed them, but in other ways, being in that room is exhausting.  Amy knew most of the children in there (as she mentioned in a previous blog), and I could see that that was hard for her knowing some of her friends from RMH have still not gone home.  It is also hard in that room because you see and hear the pain the other children are going through.  Most of the mothers spend long days there by themselves (and some weeks) without the rest of their family.  I can imagine people don’t understand how sitting in a hospital room and simply comforting a baby could be exhausting, but believe me...it is.  The emotional toll it takes is so hard.

We both dreaded Hope’s heart catheter, but also wanted it to be done and over with.  I don’t think words can describe (and I know many of those reading this blog can relate to Amy) watching a mother hand their child over to a doctor to go into the OR for a risky procedure.  I watched tears come down Amy’s face as she watched Hope being carried down the hall, I had no words.  What could I possibly say?  Could I say I understood?  No, I couldn’t.  Could I say everything would be okay?  No, I couldn’t.  I tried to keep her distracted during the procedure but it was hard as I was so anxious too, but trying to hide it.  When Amy’s pager went off after 4 hours, she literally jumped.  I don’t think I have ever seen someone walk so fast and I tried desperately to keep up to her.  When we got to the OR, Amy immediately saw Hope, but we were taken to another room.  Amy said to me “Did you realize that they never said she did okay?”  I cant imagine what a mother would feel like to be saying that.  I wanted to hug her and cry, but I knew I had to be strong.  I picked up a magazine, a pretty thick one, and tried reading it.  I turned page, after page, after page, and I don’t think I read one thing.  I couldn’t even tell you what that magazine was about.  When the nurse told Amy that the doctor was delayed (again, like Amy talked about previously), and that Amy could see Hope while we waited, she honestly ran out of the room to get to her baby girl.  I scrambled to get our jackets and purses.   Hope was somewhat alert in recovery and reached out to hug her Mommy.  After I took a picture, Amy immediately asked the nurse if she could pick her up.  I don’t think words can describe how precious this moment was.  Although, Amy was frustrated at the lack of answers from the heart catheter, the good news was that Hope got through it alive, and God will continue to guide us through the next steps.

I didn’t want to share my experience this week for everyone to feel sorry for Amy and Hope.  I wanted to share it to explain how strong Amy and Hope are.  I think Amy hugged and thanked every single person who came in to say hi to Hope, or to meet them.  She welcomed everyone with such open arms.  She was so thankful, as was I as her friend, for so much help.  Throughout all of this, Amy always took time to talk to the other mothers in the room for hours to help relate to them, and to explain her journey, and offer advice.  She was constantly worried for the other children.  Of course, Amy was sad at times, and cries for her precious Hope, and  of course, she misses Sadie and Shawn.  However, she knows God has a plan for her, and she trusts that.  She knows she will be okay.  Even though all of this is so much harder than most people could ever imagine, she has so much faith and she will never be resentful.  We cried a lot this week, we had a lot of anxiety, we had a lot of frustration, and we had a HUGE lack of sleep, BUT we also had a lot of laughs, hugs, smiles…and most of all, a lot of happiness.  We CHOSE to have fun, and we sure did.  From Hope’s ‘gangsta’ nasal prongs, to laughing and having all the talks with Amy’s friends,  to our hours of driving around for Taco Bell, to all the candy we ate, to watching all our dumb reality shows at night.  We made the best out of the situation we were in, and enjoyed ourselves.  We were and continue to be THANKFUL.  We both trust in our Lord.  God brings people into your life for reasons.  Thank you Jesus.   <3

For all those who don’t have Amy on facebook, here is Hope embracing her Mommy as she woke up from surgery:

Another Question??

I am sure to have sprouted some grey hair today.  The stress of your child being in the OR is really difficult.  I arrived this morning at 6:30 and found Hope asleep.  She had slept through the night and been completely settled.  Hope woke up moments after I walked in and screamed out, until she saw I was already there.  We had a good morning snuggle while the doctor and nurses called around to see if Hope's heart cath was still a go.  There was no PICU back up bed available and the anesthetist was hesitant to take Hope as a result.  I was really nervous that the procedure was going to be cancelled, but we ended up getting the go ahead.  I walked Hope downstairs and had to hand her over to the anesthetist.

The 4 hour wait was horrible.  I was told it would be about 3 hours, the final hour was the most difficult.  When the pager went off I nearly jumped out of my skin and walked as quickly as I could to find my little girl.  The doctors were all around her recovery bed, and I noticed that she was moving and clearly alive.  I also saw that she was no longer intubated, but was told I could not go near her yet.  The resident gave me no information and lead me to a small, cold room to wait for the doctor.  That wait is also terrible and never goes quickly.  I was worried that something terrible had happened, everyone was very professional and uninformative.

Eventually a nurse came to say that the doctor was delayed and I could now sit with Hope.  It felt so good to have her back in my arms and to see that she was truly stable.  When the doctor came he took me into another room to show me videos of the procedure.  To be honest, if someone had shown me videos of a colonoscopy, I wouldn't have known the difference.  I just nodded and pretended to see the non-exist vessels he pointed to.  

It's very confusing, but I'll do my best to explain the results.  During the cath they measure the vascular pressures through the lungs and heart.  The left and right pulmonary pressures were different.  One was 14 and the other was 17.  They weren't thrilled by this, but also not too concerned.  They saw very minor narrowing, nothing that needed to be repaired and were decently happy.  The confusing part was the aortic arch.  In the ascending aortic arch they found high pressures, but expected this because of the Glenn.  The descending aorta pressures were closer to the normal, yet still high range.  The problem is that the ascending and descending pressures were different by a gradient of 30!!  It should never be that different.  

The only way to explain a difference at that degree is an obstruction, narrowing or back pressure.  The doctors are not able to find any obstructions, no obvious narrowing and are not able to explain where the back pressure would be coming from.  So basically, they know there is a problem, but not where it comes from.  As a result, they can't fix it, as they don't know where to look or how to repair it.  The doctor, a man in his 60's, told me he had NEVER seen this before.  I'm so sick of hearing that statement from wonderfully experienced doctors.

The problem now is deciding what to do next.  Our cardiologist in Calgary wants to do a CT Scan.  The Edmonton team has yet to weigh in on whether or not this will happen.  We are hoping to be transferred back to Calgary tomorrow, but will have to wait to find out if the CT Scan is going to delay us.  This is a very busy season for both hospitals.  We need everyone to pray that a bed becomes available in Calgary for us, as a lack of bed could keep us in Edmonton.

We praise God for our little girl and the fact that she pulled through today.  We are asking for God to give the doctors incredible wisdom as we move forward.  We are clearly frustrated by the lack of answers, yet thankful for Hope's life.  I'm not sure how we're ever going to get this girl home if we're not sure what's wrong!

Stay Away Fevers!

Today was surprisingly less boring than originally anticipated.  Arriving at 8am, I thought I would be there in plenty of time.  Hope was already off having an echo when I walked in, things start early here.  The boring day turned  out to be very busy.  Hope had an echo, X-ray, ECG, blood work and 7 different visitors and that doesn't include all the doctors and nurses that came by!  We survived the day in one piece, but I was exhausted by 6pm and ready to crawl into bed.

Hope's blood work was an interesting experience.  We were so happy to have the amazing pediatricians back, they were able to get blood from Hope's PICC line, not easily!  Hope was fairly grumpy because of the second tooth continuing to come through.  I am terrified that her heart cath will be cancelled because of the fevers she spikes with teething.  PLEASE pray that Hope will go through the night fever free.  She was getting pretty high before I left for the night.

I need to keep it short as I have to be at the hospital at 6:30am, that's a bad start to a day.  Please pray she does really well tomorrow and can be transferred back to Calgary on Friday.  An update on Sadie...she is putting some weight on her right leg and shouldn't need to be re-casted, praise the Lord!  Thank you for continuing to pray for our family.

Edmonton Delay...Take One

We have our first delay up in Edmonton, hopefully the last!  First I need to tell you about the crazy morning...
Sadie had an appointment at the hospital this morning to look at her fracture.  As I was driving to the hospital with Sadie, I found out that Hope was going to be transferred to Edmonton in the morning.  I talked to the receptionist at the bone clinic and explained that I was in a huge hurry as my daughter upstairs was about to be airlifted to Edmonton.  I wasn't able to see Hope on Monday and was desperate to see her before she left.  They were amazingly understanding and took Sadie in right away. They X-rayed her leg and said that the fracture is healed and looks really good.  Unfortunately it can be impossible to see on toddlers and it may still be there.  They removed the cast, Sadie was complaining a lot about it bothering her.  It made sense when we saw the sore on the top of her foot from the cast rubbing.  She was not a fan of the removal process at all.  During this time my phone is ringing as the transport team arrived to take Hope and I needed to sign consent.  I didn't want to leave Sadie so upset, and wanted to get to Hope.  I was truly torn.

The doctor quickly finished with Sadie and told me that she needs to be walking on her leg within 48 hours or she'll need to be recasted.  Sadie is not walking on it at all so far and keeps telling us that it still hurts.  Please pray she's doing jumping jacks by tomorrow night!

I ran out of the office with Sadie in the stroller.  I hate to run, but I was booking it down the halls to get to Hope's room.  I could see the transport team at the end of the hall when we arrived and pushed through to get to Hope.  After I got her in my arms I started to cry.  I had wanted to see her so badly and was overwhelmed that I had made it, just barely.  I signed consent and she was quickly loaded up and taken to her VIP plane once again.  This little girl is going to have a rude awakening when she has to fly commercial airlines in coach and on my lap!

I went back to the house with Sadie to drop her off and pick up my stuff before starting the long drive to Edmonton on my own.  Thankfully we made the choice to have our home care nurse come up to Edmonton as well.  She can still do the night shifts here through our insurance, we just had to pay for her travel costs.  That allows me to not stay at the hospital 24/7 and to get more of a break.  I was also able to stay in the basement suite we had last time.  This is a huge blessing as RMH was full and hotels are so poorly located here.

I arrived in Edmonton and within the hour was told that Hope would NOT be having a heart cath on Wednesday, she was bumped to Thursday.  This is so frustrating, we could have spent an extra day in Calgary and I would have had more time with Sadie and my friends visiting from Colorado.  I would have been able to have dinner with Shawn too!  Shawn laughed when I told him, he knows to expect the delays and isn't surprised when they happen.

Hope will be taken as the first case on Thursday, at 7am!  I am not happy about the crazy early morning  or the fact that my normal routine of going to Earl's for lunch to stay distracted will not work!  They told me to expect Hope to be in the cath for 3 hours.  It sounds like they will need to go through her neck, this is very risky if it clots.  Please pray against clots, this could easily kill her as it takes blood to her brain and the other side is already clotted off.  They think they may need to dilate her pulmonary arteries, this is also very risky.  If they cause a tear, Hope will be taken directly from the lab into the OR and will have her chest opened in an attempt to fix this tear.

As you can imagine, I am not very excited about going through this without Shawn.  I am praying that nothing bad happens and I simply have to call him after to let him know she's ok.  I'm not sure how I will survive receiving bad news without my other half, my stronger half.  Please pray that everything is very routine and we don't have ANY complications.  I'm still hoping to make it back to Calgary by the weekend.

Tomorrow is going to be a pretty boring day of sitting around the hospital with no purpose.  We now have an 'extra' day and will just sit around waiting for interesting people to walk by or nurses to entertain us.   I sure hope that Hope is in a good mood and is ready for a mellow day after all the excitement of today.  They have put Hope in ICE, although I'm not sure why.  We often beg to get into this room in order to get better care.  We have no reason to be in there now, but are thrilled to have the hands on nursing care that we prefer for Hope.  It was sad to walk in and realize that 2 of the 3 other kids in the room were ones I knew.  Both families were here when we arrived last time and have never been able to leave.  I am forever reminded that we are blessed and should never become so focused on our own issues that we lose sight of the fact that others are suffering as well.

SUCCESS!!

Just a quick update for those of you that aren't on Facebook.  Hope's PICC line was a success today and is now in her right leg in a better location.  Hope was able to have an epidural and did not need to go under a general anesthetic.  She spiked a bit of a fever after the procedure, but is resting well now.  We'll find out tomorrow morning if Edmonton has a bed for her and the transfer is a go.  If it is, I'll be on the road to Edmonton while Hope gets to fly VIP once again.

Thank you for praying us through today.  This is the first, and hopefully last, time that Hope was in the OR without Shawn or I at the hospital.  My stomach is still a bit unsettled and I didn't want to risk it until I was sure it was just food poisoning.  I guess I won't be stopping at Arby's for a quick lunch anytime soon!  Thankfully our little lady wasn't alone, but Shawn and I were pretty stressed all day not being there.

Date Night Fail

I am slowly coming to the realization that planning is not a good idea.  With friends in town from Colorado, I planned a day of rest for myself.  On Monday I booked appointments and planned to do errands that I enjoy in order to rejuvenate and get ready for a busy week, month and maybe even year.  We then found out that Hope was going into the OR on Monday.  They have decided to pull her PICC line and put in a new one on Monday if they can.  Unfortunately we really need them to be successful.  One of Hope's nurses accidentally pulled Hope's PICC line some of the way out today.  It is no longer in place and cannot be used for her TPN because the concentration is too high and would burn her.  They are running a lower concentration of the liquid nutrients to keep her weight loss to a minimum.  Our hands our now tied and we need a miracle in the OR tomorrow.  I will also have to cancel all of my appointments in the morning and will not be resting.

Knowing that Hope throws some curve balls our way, Shawn and I decided to go on a date tonight.  We know we won't have a lot of time together this week and with our friends here, it was perfect.  Sadie was left home, happy in Heather's care.  We drove Lana to the hospital to take over with Hope and spend the night there.  I barely made it to Hope's room before my stomach revolted against me and I had to hang out in the bathroom for awhile.  Sorry for the over share.  With that, our date was cancelled and we drove home quickly so I could spend the night with our toilet.  I'm just praying it passes quickly and was only something I ate.

On Tuesday Hope will be airlifted back to Edmonton and will have her heart cath on Wednesday.  We are praying that she'll be able to come back on Thursday or Friday.  If that happens, Shawn and Sadie will stay in Calgary to stick with Sadie's normal routine.  If Hope isn't leaving Edmonton as quickly as we hope, that could change our plans.  With two anesthetics in three days, we realize it could be a challenge.  

I'm not really sure how I feel, numb I guess.  I'm anxious about the upcoming trips to the OR and always hope for the best but am aware that Hope often struggles.  This is going to be a difficult week regardless.  We could truly use your prayers.

True Joy

I find it more difficult to write if I try to pretend I feel something different than I actually feel.  This week has not been easy.  I'm tired, my neck and back are aching constantly and I dream of having a morning that no one will need me and I can sleep until my body feels like waking up.  At the same time, I know that my girls are both worth it.  When Sadie calls out in pain in the middle of the night, or yells so I can help her get out of bed in the morning, I never hesitate.  I want to run to her and be there to lift her up and reposition her so she can sleep.  Some days Hope fusses for most of the day and I start to feel frustrated.  All it takes is for her to grab a handful of my hair and stroke her face with it, or put her fingers on the side of my face and touch my cheek.  It gets me every time and I remember that she is worth it.

Tonight Shawn and I put Sadie to bed and spent the night hanging out with each other.  We sat on the couch and watched one episode after another of one of the shows we like.  We laughed.  I ran upstairs to grab a glass of water and stopped as I passed the mirror and saw my smiling reflection, I'm happy.  I know, it's hard to believe.  The world is stacked against me and each day I carry the weight that every doctor thinks my little girl is going to die.  They may be right.  Those things hurt and I shed my fair share of tears over them all the time.  But the very core of my being, the soul within me that believes God has a plan for my life, for my family, it feels joy.

I would not have chosen this for my family, having a sick child is never easy.  I cannot allow myself to forget that I have so many things in my life that others would have chosen if given a choice.  I have a husband, one that loves me.  I have two children that I love dearly.  I have a roof over my head and a full tummy each night when I go to bed, often too full.  I have friends and family that never seem to tire and continually stand with us through this crazy journey.  More than that, I have a God who gave up his son and allowed him to be tortured and die so that I could be free.  I feel like Hope is tortured on many occasions and the pain I experience while it happens is often too much to bear.  Handing her over and willingly allowing her to die, that I cannot even imagine.  How can I not be thankful?

Amongst my joy, there is very real pain and this week it has been suffocating.  I often find myself in a daze and struggle to remember what I was doing before I return to reality.  I am overwhelmed and my brain simply turns off to protect itself.

This morning I got a call from the cardiologist.  We were both sleeping, the doctor yawned as we spoke, but Hope was not having a good night.  She is spiking high fevers once again and has been put back on antibiotics.  They decided to put her on the strong stuff again and we pray that it works.  They have also thrown in the towel and have admitted that the PICC line has got to come out.  They are now looking for a team of doctors that is willing to take on the challenge of getting a new one in.

The Cardiologists are talking about sending us back to Edmonton at some point on Tuesday.  Hope would have her cath on Wednesday.  We will need to wait and see if the blood cultures they drew from her this morning grow anything.  This infection has been well hidden and is not showing up on the blood cultures previously, so I don't expect them to grow.  As long as they don't, we should be moving forward with the heart cath.  Please join me in praying that this is a short trip to Edmonton and that Hope will be back before next weekend.

At this point it sounds like Hope will have to be put to sleep 3 times before January is over.  She needs the heart cath, the varices treatment and a new PICC line.  Every time we send her back into the OR it takes weeks to get her development back to where it is.  My daughter is 9 months old; she can't roll over, sit up, hold her head securely, make babbling sounds or laugh out loud.  We are already so behind and each day she is denied the opportunity to grow and develop is really hard.  We want to come home and are willing to do what it takes to get our girl home.  Sadie prays everyday that Hope would get better and asks if she's coming home.  Regardless of what Hope's future holds, we want to spend more time with her at home as a family.  Please join us in praying that this dream will soon be a reality.

Old Wounds Still Bleed

Today we had our meeting with Cardiology and GI.  Although many of the sad realities of Hope's condition and chances of survival have been explained to us before, it is always difficult to hear.  I'm not sure if my brain just filters the negative information and stops me from accepting it all at once, or if I just refuse to accept reality.

Hope's liver problems are serious, they are more likely to cause us to lose her than her heart that is only half there.  This is so frustrating and we continue to hope that she will be able to have surgery on her liver in order to give her some chance at a future.  We may not find out if this is possible for some time now, all the more time for everyone to pray.

Apparently things are changing once again, the heart cath is back on the table and is likely going to happen in the next two weeks.  We'll figure out if I'll go up alone or not based on which day they schedule it for.  This is not the safest procedure for Hope and we truly hope they find something that will help Hope and we aren't doing this for no reason.

Hope is not on infant formula any longer.  Nothing is working and they have come up with a new plan for Hope that appears to be working.  It's only been 12 hours so I won't hold my breath just yet.  Hope is now on toddler food.  It is essentially the foods you would feed to a toddler, all mashed up and turned into liquid.  They wonder if giving Hope real food instead of manufactured fake food will sit better in her tummy.  Please pray that this is the answer we've been waiting for.

We were told today that if Hope can get off TPN (liquid nutrients), that they would let us go home with a PICC line and an NJ tube.  Both things you usually have to get rid of before leaving the hospital.  They feel sorry for us now and are willing to be flexible if we can get Hope on full feeds.  Please pray for this miracle to happen!

As for Miss Sadie, she is a trooper.  It's not easy to carry her and her heavy cast around.  She can't wrap her leg around my hips to help and my back is already sore.  She did fairly well today but has had a rough night.  She's been up numerous times crying and complaining about the pain in her leg.  It's getting close to midnight and Sadie is in the bathroom with Shawn brushing her teeth.  She's usually an amazing sleeper, this is not like her at all.  It looks like we might have to bring her in bed with us tonight.  Something we are not into and avoid like the plague.

I miss Hope tonight.  After spending the morning with Sadie, being in that meeting for a large part of my time at the hospital and spending the evening at home, I miss my girl.  I managed to run into the mall quickly while Oma sat with Hope.  I had to buy pants for Sadie that will fit over her cast.  I grabbed 3 things and pray they work, I don't have the time to look around and it's too cold to leave her bottomless!

Life is tough and often down right sucks.  In the midst of that, I am always reminded that we have so much to be thankful for.  Last night as I pulled into the hospital parking lot with Sadie to have her leg X-rayed, a helicopter was landing.  When we got inside the ER I watched as a seriously injured teen was wheeled past me.  My daughter broke her leg and it's very inconvenient and frustrating.  On the other hand, she is going to heal quickly and should be just fine.  The teen that I saw last night is not going to heal quickly and be just fine, their family has a long road ahead of them.  It's not different with Hope either.  We have the odds stacked against us and smart doctors telling us that our chances are low.  Other families have already lost their children or are battling even more complications.  I am still blessed, just tired.

It is only by the power of God that I can still say, 'It is well with my soul'.

Reality TV...here we come!

I am pretty confident there are hidden cameras following us or we're being prepped for reality TV.  Our life is starting to feel like a scripted TV show that is simply too crazy to believe.  Today Sadie fell off her bed in the afternoon.  This is not surprising, she's 2 and falls off or over something almost everyday.  Her bed is really low to the ground and a few kisses from mom usually heals all wounds.  Today we came home and Sadie was sleeping.  She often puts herself to bed if she's not feeling well.  I worried that she had a cold or ear infection brewing.  After her fall she snuggled with one of our friends as she cried and then laid down and went to sleep.  We're pretty sure now that she went to sleep because she was in shock...I never would have guessed that.

When Sadie woke up she told me right away that she hurt herself.  I picked her up and snuggled with her for a while.  When I put her down her right leg gave out and she fell to the floor screaming.  I picked her back up, comforted her until she calmed down and tried again.  Once again her right leg gave out and she began to scream.  Shawn decided she needed to go and have some X-rays.  I wasn't thrilled to drive back to the hospital after spending my day there, but didn't have much of a choice.

Sadie was chatting all the way there and telling me about her day, happy as can be.  I  put her in the stroller to take her in and she seemed completely fine, until the nurse touched her leg.  Then the screaming began again and she was less than impressed.  After a few X-rays we were told that she fractured her tibia.  This is apparently a common injury in toddlers and often happens from very minor falls.  Unless you turn the foot, it doesn't hurt too badly.  That is why she completely settles when she's not standing or being touched.

Sadie now has a cast that runs from her toes to her upper thigh.  She calls it her "boot" and keeps asking me to take it off.  She asked the nurse for a knife after the cast was put on.  They asked her why she needed a knife and she said, "to cut off my boot!"  Hopefully she adjusts to having it and not being able to walk for a few weeks.  Being two, she's not old enough to use crutches and is going to be pretty frustrated with her slow moving lifestyle.  We have yet to tell her that she won't be able to take a bath or go swimming, she'll be crushed.

As for Hope, she continues with her terrible diarrhea and has a diaper rash that is the worst I've ever seen.  Her retching is slightly better but is still not great.  Tomorrow we meet with GI and Cardiology at 11am and would truly appreciate your prayers for this meeting.  I'm going to stay home tomorrow with Sadie until the meeting to help her adjust to her new boot.  If things don't go well, I may need to spend the day with her and just pop in for a visit with Hope.  Once again I'm torn between my two girls and overwhelmed with caring for them.

I must admit, I laughed in the ER.  I simply cannot believe that our Sadie broke her leg from a minor fall and is in a full cast.  Please pray for this strong willed and independent child as she loses a lot of her freedom.  I wish I had the free time for a shopping trip, she would sit in the stroller for once and not be able to run away at least!  I have to look for the bright side of everything in life!

Second Wind

Sadly, today I did not get any smiles out of Hope.  She did have a couple of good naps and appears to be retching a touch less with the new anti-nausea meds.  She is now getting them around the clock to give her a break from the constant gagging.  The diarrhea does not appear to be slowing down or improving, we've just added a terrible diaper rash to the mix.

It sounds like we'll be sitting down with GI and Cardiology on Wednesday in the late morning.  Please begin to pray about that upcoming meeting.  We really want to see some progress come out of this meeting.  So many things are undecided and nothing seems to be happening with Hope.  We found out that the heart cath is still being talked about.  We thought they had decided not to do it, but apparently it's more of a disagreement among the doctors.  

Today the nutritionist came to speak to me about Hope's feeds.  Hope has been losing weight and continues to weigh in at her July weight.  That's almost 6 months of her life without any weight gain, not very encouraging.  We have tried almost every specialty formula and trick to make her body accept food.  It doesn't appear she's willing to do this.  We are talking about taking some more extreme measures in getting Hope to eat.  Shawn and I are praying about what to do and if we feel comfortable with these ideas.  Please pray that God would give us wisdom as we decide what is ultimately best for Hope, but also what is best for our entire family.  

I'm exhausted.  Usually I have a few bad days and can quickly snap out of it.  For some reason I continue to struggle with feeling tired and yet have trouble sleeping at night.  Please continue to pray for me as I pull myself up each morning to spend the day with Hope.  I really hate not being able to spend my days with Sadie.  I know that Sadie is in good hands, but I desperately long to parent both of our girls.  It feels very strange to be a 'stay at home' mom that has a Nanny.  

Hopefully my second wind will come tomorrow morning and I'll be able to pull myself together this week.  I cherish the moments I get to spend with Hope when she's awake and happy in my arms.  Today she played with my lips and just stared at me, beautiful memories.  As we fail to move forward with Hope and her feeding intolerance seems to get worse, I start to worry that we'll lose her.  We know this is a reality of her condition, but it's not one I'm willing to face until her heart beats for the last time.

Infection #1000

Hope is back on antibiotics and appears to have another infection, likely in her PICC line once again.  We're getting sick of this and ready for the line to be replaced or no longer needed.  This has been a week of frustrations and as they rise, we fight harder.  This can sometimes be a good thing as we get more aggressive with the doctors to get things done for Hope.  It sounds like we'll be having a meeting with GI and Cardiology this week to discuss Hope and what is next for her.

Hope continues to retch and throws up often.  She is also having continual diarrhea and we are going through 10 or more sleepers per day and the laundry seems to never end now.  Hope is smiling less and clearly not feeling well, the fever is likely to blame.  We need our little girl to light up again, it gives us strength when we see her smile.

We continue to push forward with Hope's feeds in order to get her off the liquid nutrients.  It's not easy on her, but she's a tough little girl.  It's hard to believe she's already 9 months old.  Please pray that she will be able to handle getting to her full feeds.

Thank you to everyone that has encouraged us this week.  It's been really difficult and we would not be able to carry on without the support of those around us.  Today I stood in the hallway of the hospital and hugged another patient's mother.  She is all alone, after having a child in the hospital for 18 months and those around her getting tired.  We really appreciate everyone that continues to stand with us, we know this journey is long.

A Message from Hope's Favorite Texan

Hi blog world, this is Amy’s friend, Liz, from Texas. Amy thought it might be nice to have a guest blogger to give a different perspective on everything. I am nearing the end of my ten day visit and as I am writing this, I am sitting in Hope’s hospital room after my first sleep-over with her. I visited in August and things were pretty different during that visit. At the start of my visit then, Hope was allowed to go home and by the time I left five days later, she was back in the hospital again. I am thankful that I got to spend time with Amy and her family with Hope at home. That life, though difficult, is much easier than this hospital life.

It is tough to see my good friend walk down this hard road. We met in Maui in 2005 without a care in the world and now it seems Amy has the weight of the world on her shoulders. Obviously it is heart wrenching to watch your child suffer through dangerous surgeries and procedures, but this gets magnified by the boredom of the hospital. Having only spent about eight days here so far, I don’t know how Amy can stand it. The monotony of it all is maddening and combining that with the weight of a sick child can be crushing. I have seen Amy reach her hospital limit this week. It’s hard to believe she’s been able to stand it this long. I am going stir crazy after 8 days and I’ve almost never been here alone. I also don’t bear Hope’s burdens the way Amy does. Shawn helps out as much as he can, but since he works to support the family, he cannot be at the hospital the way Amy can.

Those of you who know Amy well, know she is not perfect, but she is strong and tenacious, which makes her well-suited to advocate for Hope. I am in awe of the way Amy and Shawn fight for their daughter and I know they are a big part of why Hope is still with us today. Amy has always been a strong person, but the strength she and Shawn are displaying in the face of all this cannot come from within them alone. God is the one who is sustaining them and allowing them to continue this journey with their daughter. On days when they almost want to give up, God provides for them in amazing ways. I have been blessed by the way so many people: family, friends and even strangers have pitched in to help this family. Amy has received letters, gift cards, clothes, and toys in the mail. People have cooked meals for the family. She has also met some amazing people who volunteer their time with her family. It is impossible for Amy to stay at the hospital 24/7 and still be there for her other daughter and husband. She would also probably go insane. I am so thankful for all the people who volunteer to spend their morning, afternoon or even their night with Hope. Amy and Shawn have been blessed by their insurance company allowing them to have a night nurse again. Because Hope is so fragile, she needs someone to stay with her overnight even though she is in the hospital since the nurses here often have several patients to take care of at once. Amy and Shawn’s night nurse is pretty amazing. She loves Hope almost as much as Shawn and Amy do and often checks up on Hope and always stays up to date with what is going on with her. What a blessing! I am so thankful to God for providing all these people to help my friends. They couldn’t do it without you guys!

I will be sad to leave Amy tomorrow night, but honestly also a bit relieved. This life is hard and I don’t think I am strong enough for it. Please continue to pray for the Koslowski family. Thank you for loving my friend and her family. I feel so blessed to have been able to come and spend this time with these precious friends.

Tough Tears

We finally have a date for Hope's next varices surgery.  She will be going in on January 22nd.  That gives us a couple of weeks to pray for this procedure, I cannot handle losing ground with Hope.  She continues to poorly tolerate her feeds and is not getting any better.  Going back to the OR makes me think about weaning her off oxygen again from the intubation and stopping her feeds all over again.  I can't imagine us getting out of the hospital anytime soon.

Today has been rough. I'm getting tired and the endless hospital stay is starting to wear on me. I feel terrible that I look forward to leaving the hospital when I'm here. At the same time I'm always anxious to get back in the mornings. I love Hope like crazy. I have to remind myself that mothers of healthy children do not sit in one room with their child all day long. They walk away to shower, go to the kitchen or change the laundry.  In the hospital, you don't have those options. As each month goes by, my sanity slips further away and I have days like today. I long for a vacation from my life and yet could not bear to leave my girls behind. 

I have started working hard to stop sleeping at the hospital. Hope doesn't know if I'm there or not when she's sleeping. It helps to leave but is a part time job to organize it all too.  We also work hard to have dinner together as a family. It has taken an army of volunteers but most nights this happens. Maybe God is calling me to start a charity when this is all over. Finding other people who have experienced endless hospital stays that will volunteer their time to take over for parents that are in hospital with their children.

I truly hope this weakness and overwhelming emotion is hormonal or temporary. I cannot continue coming to the hospital and sitting next to Hope each day. Watching her retch and desperately try to throw up while her face is blue is too much. Seeing the lab roll up to the door and knowing that Hope will scream until they get their blood and leave her another bruise is so hard.  Leaving a piece of my heart each time I walk out of the hospital room is beyond painful. I want to pick her up and take her with me. We all long to be with those we love and I have to take my family in pieces each day.  

I am in need of prayer. I want the Lord to renew my strength. I desire to not allow comments from others or lies from Satan to make me feel guilty anytime I leave the hospital. I want to bring Hope home and to see some light at the end of the tunnel.  Tomorrow is a new day, I pray I wake up with renewed strength.  

2013 and Still Alive!

Happy New Year!  We have so much to celebrate as we welcome a new year.  I must admit that there were many days in 2012 that I did not expect Hope to survive.  Starting another year with Hope renews our hope that she will make her first birthday, and hopefully her second too.  I am also reminded of the little ones that did not finish 2012 with the rest of us.  Please continue to pray for Lincoln's family as they miss their little man each day.  Last year was full of constant ups and downs and although it has been extremely difficult, it was also full of blessing.

Hope continues to move forward with her feeds.  She is now taking 10mls an hour into her NJ tube and also took 5mls from a bottle for me today.  It did not happen in one sitting, but it still counts as calories into her body.  Hope is still struggling and throwing up but is keeping it to a minimum and allowing us to continue challenging her.  She is truly a strong little girl that fights for each step we take in the right direction.

We are now in our 5th straight month of hospital stays.  In the beginning I was able to stay in Hope's room for 24 hours straight.  I find myself losing my mind after 6 hours these days.  We are truly maintaining sanity, only because of the support of an army.  I feel guilty leaving Hope, and yet I have to remind myself that allowing others to snuggle with Hope is a blessing for them as well as us.  I also have to continually remind myself that the expectations I feel are ones that I put on myself.  Feeling guilty every time I leave the hospital parking lot is a way that the enemy tears me down.  Please pray that I would be able to hear the truth.

Shawn is out in the mountains today.  Having Liz here visiting has given me an extra set of hands.  It has been a long time since Shawn has been able to get out skiing.  Today is such a gift for him and although I worry about him while he's out back country skiing, I am thrilled that he is doing something he loves. We are learning that in order to take the best care of our children, we need to take care of ourselves as well.

We are still waiting on a date for Hope's trip into the OR to repair the varices once again.  We should hear something tomorrow as the liver specialist returns from holidays and will book her OR time.  I am praying that they find the varices are much better than they are expecting.  They have told us to expect her to go in once a month for six months!  If they find things are looking better, we may be able to limit her trips into the OR.  It's a new year, time for new miracles!