Wednesday, 31 October 2012

Happy Halloween!!

I've never been a huge fan of Halloween.  I don't get into dressing up and find it annoying that I have to look silly in order to collect candy.  My costumes growing up were only decent when I was younger and my parents dressed me.  After Sadie was born, I completely changed my mind.  Halloween is amazing for parents!  You dress your kids up and make them look silly.  Then you put them to bed and eat all of their candy while they sleep.

Sadie went trick or treating 3 times today!  We have a HUGE stash of candy and will be completely covered for a while.  In the morning she came to the hospital with my mom for the Halloween party here.  My mom stayed with Hope so I could spend the day with Sadie.  The hospital gets all the kids together and takes them to different stations around the hospital to collect candy.  It's such a treat for all the kids that aren't able to leave and for their siblings.  Sadie had a huge bag of candy, they are more than generous with the kids.

In the afternoon, Ronald McDonald House was having a Halloween party.  Sadie really misses all the kids at the house and loves going back.  All of the families give out candy from their rooms.  It's perfect for little kids as the doors are close together!  Sadie went around with her friends and collected another big bag of candy.

We could have easily put an end to Sadie's candy collection, but Shawn still hadn't gotten to see her dressed up.  After he finished work, Sadie and I met him at a mall near us for some more indoor trick or treating.  We weren't outside at all tonight and I was totally fine with that.  The mall was so much better than we had expected.  They had 5 bouncy castles all through the mall, an awesome petting zoo and all the stores were handing out candy.  Sadie was more interested in the activities and collected a limited amount of candy, which was probably a good thing!

At almost 7 months and only 11 pounds, it seems unfair to call her a piggy!

Too much candy caused Belle to fall into a sugar coma

Hope had a pretty relaxing day in her Nana's arms.  They left her feeds at 14ml an hour today as her tummy had gotten a touch bigger and they didn't want to push her.  She's been very content all day and even put up with a few "accessories" that were added for Halloween.  Around dinner time, Hope was moved from ICE to the ward.  She will now spend the next week on the ward until her surgery.  Hope continues to receive the liquid nutrients through her PICC line and will not be discharged before the surgery.

We want to praise God for how strong and healthy Hope appears to be right now.  We also want to pray for protection from infection or complications before surgery.  I moved back into the hospital tonight and Hope is so happy to have Mommy sleeping in the bed next to her.  She's a real Mommy's girl and likes to see me at all times.  I don't feel like I can complain about sleeping here, it's only for a week and I've done so much worse.  With Hope going in for surgery, I look forward to this week of cuddling with her.  I will miss seeing my family in the evenings, but will still see them every day.

We pray we're able to spend Halloween with Hope next year.  We want her to be free of tubes and wires so we can dress her up in something silly too!

Monday, 29 October 2012

Monday again...

You may think that every day is the same for us and we wouldn't care which day of the week it is.  This is not true at all.  The weekends are terrible if you are not in PICU.  Nothing happens over a weekend on the ward and you would think the entire hospital was closed.  If you happen to find a doctor, you should win a prize.  It's almost like a treasure hunt to find them on a Saturday or Sunday.

Every other Monday is the worst day of all.  That is when the new cardiology rotation starts and you start your fight over.  I have found that the majority of the doctors come on with extreme arrogance and give you the impression that they are in ultimate control and you mean nothing.  It's a good thing I knew that this morning, when rounds began.

The doctor introduced himself and went through rounds on Hope.  I voiced the fact that I wanted her feeds to continue slowly and he agreed that we were on the right path and to continue slowly was a good idea.  I asked about a few of her medications that we wanted changed, he also agreed to do this.  Apparently it was a two request kind of morning.  He said that he planned to change Hope's status so that she was no longer on close observation.  I told him that I didn't feel that was a good idea with her history and the location of her PICC line.  There is a high risk of infection and losing the PICC line would absolutely leave us with no options currently.  His response...He told me that I need to think about the other families, that every parent wants close observation for their child, but not everyone can have it.  I bit my tongue today, I don't want to start a war on his first day of a two week rotation.  I was not happy though.

Selfish, that is the only attitude that works in fighting for the best for your child.  I am aware of the other families, I am friends with a number of them.  We all want more staff so that our children can receive the care they SHOULD be receiving.  It's not about what we want, it's about what our children need.  I am aware of the other families when I have to wait 7 hours for a doctor to come see me and when we are moved to the ward and should still be in ICU.  We were bumped numerous times from our first surgery for other families and we have waited to be airlifted for other families as well.  I am 100% aware that Hope is not the only sick child.  Hope is the only sick child that I am responsible for though.  I am going to continue to ask for things that benefit her, that is the only way I know how to care for her.

The doctor returned with another snarky remark after not hearing my original question.  He completely missed what I had asked and started to lecture me.  He was then interrupted by one of the nurses, who informed him that he was lecturing me when I had the exact same opinion on the matter that he did.  Mondays are exhausting.  I already feel like I've been fighting extra hard this week, and I'm only through the first day.

There is also a positive side to this Monday.  Hope is starting to have small amounts of food trickled into her stomach.  She is tolerating it beautifully and is already down to 41.5cm in her belly!  She is so much happier and is smiling again.  I am hopeful that this slow pace in feeding will give her the opportunity to start eating normally again.  The heart surgery will set us back, but we have a plan that is working and can be used post operatively.

The comment we heard all day from the medical staff, was that Hope looked so much better.  It's so much nicer than constantly being told that she looks unwell.  Hope has lost a lot of weight as they've worked to bring her stomach back to a normal size.  Some of the weight needed to go and was purely fluid weight.  On the other hand, some of the weight was not fluid and they are hoping she will not continue to drop in weight.

Hope needs to be 10 pounds for her surgery and is currently 11 pounds.  If she continues to drop in weight over the next 9 days, this could be a problem.  Please join us in praying that Hope will stop losing weight and will at least maintain her current weight.  Please also pray against infection as we wait for her surgery.

Sadie was such a brave big sister today.  She had to have her flu shot in order to keep Hope and others safe.  She watched them draw up the vaccine and is very familiar with needles.  She asked me if it was going to hurt and I told her that it would hurt a little.  She sat completely still while the needle was given.  After it was over, she looked up at me and told me that it had indeed hurt.  Nothing a new sticker and a piece of gum couldn't heal!  It was almost as if she understood that the momentary pain was going to benefit her little sister.  She has the most beautiful love for Hope and never seems to resent her.

Thank you for continuing on this journey with us.  We let ourselves dream about being home in November, but are trying to be careful.  We know that if things don't go well in the Glenn, we could be here for much longer than we'd like.  God has given us the ability to get through each day, and we know that he will continue to be faithful.

Saturday, 27 October 2012

Another Day, Another Mystery!

I'm not sure this will surprise anyone, but Hope's bowel test came back with nothing.  Her bowels are completely normal anatomically.  They saw some slow motility, but say this can happen with the contrast dye.  I'm not sure how I feel about this.  It's nice to hear that her bowels do not have any abnormalities, but that also means we don't have any answers.  Why is Hope not able to eat?

Monday will start a new cardiology rotation and give Hope a new cardiologist.  The change over is always hard on us, but we are praying this new doctor will have some new insight that was previously overlooked.

Shawn and I took some time out this evening to go on a date.  It was so nice to act normal for a while.  We even found ourselves laughing and forgetting about the true realities of our life.  It is so important for us to step outside of our situation at times and find ourselves again.

I have had a headache for the past few days that I can't seem to get rid of.  Please pray for me as I battle with this uncomfortable inconvenience.  Hopefully I'll start tomorrow feeling fine!

Hope is acting more like herself today.  She had a few smiles for us and appeared to be more comfortable.  I think the liquid nutrients are helping to strengthen her body and it is making a strong impact.  We are thankful that she is being fed, even if it can't go through her stomach at the moment.

Friday, 26 October 2012

Slow Mover

Yesterday Hope went for a PICC line.  There were mixed opinions on whether or not this was even possible.  We knew that a PICC line in Hope's arms was not a possibility, but we had yet to investigate her legs.  After 2 hours, we were told that miraculously they were able to get a PICC in Hope's left leg.  We need people to pray against clotting, as this is not the best thing for Hope with all her clotting issues.  We were waiting in the recovery area for Hope to return, but didn't see her.  We were then told that Hope was not stable and that they had moved her to another recovery area and we needed to go and wait in her room.  Once upstairs, the doctor came in to say that Hope was indeed not stable but they weren't sure how bad it was.  We sat in Hope's room praying that God would spare her life.  I thought about snuggling her all morning and Shawn being there to hold her as well.  I wondered if God had allowed Shawn to be there because it was going to be her last day.  My heart was breaking, and yet I was holding onto hope that my Hope would return.

After an hour we were told that Hope had stabilized and they were finally able to wake her up and extubate her.  We waited anxiously for them to bring Hope back upstairs so we could hold our precious girl.  My heart leapt out of my chest as they rolled her in on the stretcher.  My love was back and was still alive!  Hope had a reaction to the anesthetic again and was tomato red for 6 hours.  This was minor in comparison to what we'd already been through.

This morning they took Hope down at 8:30am for a small bowel follow through test.  They put a contrast dye into Hope's feeding tube and began taking x-rays to track its progress through her bowel.  They took x-rays on and off for 12 hours.  Clearly things were not moving through as well as they were supposed to.  We missed the radiologist and won't receive results until tomorrow, but are praying they've found something they're able to treat medically.  This explains a lot of the swelling in Hope's abdomen.  Each time we fed her, the food was simply collecting in her tummy and taking hours to move through.  Eventually, her stomach would be so full of food, she would throw up.

We are thankful it's the weekend and thankful my mom has returned to help us out.  We have much to praise God for today, sweet Hope is alive and we're thinking they will find something in the test they've done today.  We continue to pray that a miracle happens in Hope's life.  We have to hold onto hope that she may live.

Thursday, 25 October 2012

PICC's and Pokes

There was a time when the doctors sought to protect us from harsh reality.  That is no longer the case.  This morning the doctor told us that the Glenn may actually make Hope worse.  As for the Fontan, he said she may not make it there.  I'm learning to face the reality that there is a high probability that we will have to say goodbye to Hope.  I simply will not give up on her until we are truly there, I have no other option if I want to be a good mom to Hope.

This afternoon Hope will be taken for another PICC attempt.  It would save her from all the IV pokes and allow her to receive her liquid nutrients through it to avoid burns.  We fear that it will be unsuccessful and she'll be put under for no reason.  If it is successful, it will allow Hope's care to move forward.  I don't believe they even have a plan B for her at this point.  They will be looking to get a PICC in one of her legs as her arms are no longer an option.

Hope was supposed to have a procedure done this morning to see what her intestines are doing with food that is put through her tube.  Unfortunately, they forgot to put in the order to stop one of her meds that needed to be discontinued before the test.  As a result, the procedure was cancelled and will hopefully be rebooked for tomorrow.  We hope they find something to explain her feeding issues, but pray it's something that we're able to treat.

Hope's Glenn is still booked for November 7th as it's the next step for her, although risky.  If they find something they are able to treat with her stomach, this date could be altered as a result.  Nothing is a sure thing with Hope and we take each day as it comes.  I simply pray that today is more hopeful than yesterday.  Yesterday was a terrible day that involved me truly fighting the staff to keep trying with Hope.  I was emotionally exhausted by the end and frustrated that this responsibility was on me alone.  I wish Shawn was with me all of the time, but understand that he isn't able to be.  Hope is our daughter and making decisions about her life should be something we do together.  Shawn has been supportive of my decisions and trusts in my ability to fight for Hope.  We are a team at heart, but are not always able to fight for Hope together.   

Please continue to pray for us.  We know that God is able and truly pray that He intervenes in Hope's life and sustains it.  We don't know why Hope has to walk this terrible road, or why we were chosen to walk it with her.  We trust that God's plans are greater than our own, but struggle to see how we'll move forward if His plan is not to save Hope. 

Wednesday, 24 October 2012

No End to Bad News!

I wonder if there are days that people read the blog and imagine it is all make believe.  How could such a little girl go through so much drama in 6 short months.  Sometimes I dread writing the latest news as it makes it more of a reality to me.  I am forced to remember that this sad story is not from another family, it's our sweet Hope.  Today is another one of those days, one that I wish was filled with more good news and optimism.  

Hope made the move up to ICE (the step-down unit from PICU) around 4pm yesterday.  I was incredibly exhausted from the long, stressful days in PICU and only stayed with her through the transfer.  I left the hospital around 5:30 to get home for dinner and a much needed relaxing evening.  

This morning I arrived at 8am and found Hope asleep in her crib.  They told me she'd done well through the night and seemed to be tolerating her feeds.  When she woke up we measured her tummy, 48cm.  I asked the nurse to check her NJ tube to be sure her food was not pooling in her intestines.  Sure enough, her NJ tube has not been the solution as her intestines were FULL of feed and her food was stopped once again.

Rounds began shortly after and they began discussing the next steps for Hope.  If we're not able to feed her, she needs nutrients through Lipids and TPN (these are liquid nutrients that were given when Hope was born and include everything her body needs, but run through the veins and not the digestive system.  These are usually run through a central line or PICC line.  Unfortunately, this is not an option for Hope.  They've decided to run these through the IV in Hope's foot.  This is extremely dangerous and will keep her in the ICE for the next few days for sure.  If the IV is lost (which happens VERY often with Hope) and the concoction continues to run, it will cause terrible burns to Hope's skin.  Just writing that makes me cry as I'm fairly certain it will happen.  They will watch the IV as closely as possible, but we've seen human error is a reality of life in the hospital.  Please pray that the IV is not lost and her skin is not burned.

They believe Hope has NEC (Necrotizing Enterocolitis), it is an infection and inflammation that can cause the destruction of the bowel.  If they continue to feed Hope while her bowel is clearly striking against it, it could cause permanent damage to her bowel and result in her death.  She is now going to need to receive the IV nutrients for at least 5 days of fasting.  She will also continue on her antibiotics to attack this infection.  They feel that this is in correlation with her liver issues and the clotting there.  They are not 100% sure that this is truly what is causing Hope's bowel issues, but are going to treat it in hopes that it will work.  

I was told this morning that Hope is simply too fragile and will not be discharged before surgery.  She is not allowed to go on passes and will be here until November 7th.  Two weeks today she is scheduled to go in for her Glenn.  Please pray that she is not bumped continually and that her surgery will happen on time so we can at least get back to Calgary.  Once she's had the heart surgery and is stable, we'd be transferred to the Children's Hospital in Calgary.

After speaking with the liver doctor about Hope's MRI from last week, they've confirmed that her liver issues will take a VERY long time to resolve and will not be any better if they delay surgery.  This is a comfort for us to know as we wondered if waiting was safer with Hope.  We now have our answer and can move forward in confidence.  The images from Hope's MRI showed that the clotting issues with the liver are worse than they originally suspected.  They told me this at rounds this morning.  

It's starting to look like the Glenn may not be the life changer we had hoped for.  This may be our life with Hope for a long time.  I can't even allow myself to imagine it, the thought is simply too painful.  I'm overwhelmed today and longing to run out of the hospital and escape this reality.  Hope needs your prayers desperately, and so do we.  Today I wonder where our miracle is, and if it's ever coming.

Tuesday, 23 October 2012

Fighting Discouragement

The past two days have been discouraging and I have struggled to put my feelings into words. We finally had out baby 'home' and were a family again. 30 hours later we not only went back to the hospital, but back to PICU.

Hope was poked 10 times before they got a successful IV in her head. Blood is now drawn with a 5 inch needle from her femoral vein in her leg. I long to be numb when this happens but can't turn off my heart. I'm exhausted by the end of each day and longing for Hope to get a break from the painful pokes.

There are still no answers for Hope. She continues to not tolerate feeds in her stomach and is now being fed into her intestine through an nj tube. Her belly is now 46.5cm and yet she's too dehydrated to up her diuretics.

I fear she'll be here until her next surgery and fear that surgery will be delayed. I long for answers, restful sleep and my family to be together.

We still need our miracle. Please pray for healing in Hope's body and wisdom for her doctors. Please also pray for Shawn and me as we work to make this crazy life possible for our family.

Sunday, 21 October 2012

A Mystery Again.

Hope remains in the PICU this evening and we don't have any answers.  Her heart function appears fairly good.  A slight decline but almost too small to notice.  She is still on oxygen, but has been weaned down to 2 litres from 4.  She had urine and blood samples sent for testing, both came back showing nothing.  We were hoping for an easy answer, but did not receive one.  Her white blood cell count is elevated slightly (a sign of infection).  They have no idea what's going on and have started her on antibiotics as a precautionary measure.

The plan tonight was to start giving her a very small amount of food to see how her stomach would tolerate it.  Hope is not receiving enough calories lately and we worry that her weight will drop and cause issues before her next surgery.  We are praying against anything that will cause a delay in surgery.  The thought of a delay, and Christmas in Edmonton, is almost too much to think about.

We are in our new apartment now and that is a huge blessing.  It's so nice to have our own kitchen, a family room and 2 bedrooms.  We're able to put Sadie to bed on time and still have the freedom to get things done.  With Hope back in PICU, we aren't able to stay with her and are hoping for a good nights sleep.  We're exhausted and could use a good sleep tonight.  Please continue to pray for Hope, she needs your prayers.

Nothing is Easy...

Last night at 2am Shawn took Hope back to the hospital.  She is extremely irritable, labouring to breath and acting as though her throat is not feeling right since the intubation.  The PICU team is with her now and they are trying to start an IV.  We don't know what the plan for her is at this point, but we're pretty sure we won't be sleeping as a family tonight.  This is very frustrating for us and we're feeling discouraged today.  Please pray that if this is cardiology related, that they will bump up her surgery.

Shawn had to take Hope in the middle of the night as I haven't slept well in so long.  I simply didn't have the patience to sit in the ER all night with her and lose another nights sleep.  Shawn is now exhausted as well and will soon be on his way to our new apartment for a nap.  Sadie is going to spend the day with some friends and our life continues to be crazy.

Please pray for Hope, for wisdom for the doctors and for much needed rest for our family.  This journey is not easy and we're feeling the weight of it these days.

Friday, 19 October 2012

On the Move Soon??

Yesterday was more than boring, but not overly eventful.  Hope was taken at 1:30 for her MRI and we were told she'd be gone for an hour.  After two hours I started to worry and knew that something was not going well.  The anesthetist came out and let us know that they were having trouble extubating Hope.  The drug they'd given her to paralyze her lungs was lingering longer then they'd hoped.  After 3 hours, they finally extubated her and she did very well.  She was on a low level of oxygen for a few hours before she started doing well on her own.

Today has been a fairly good day with Hope.  It's clear that her throat is sore from the tube yesterday.  She struggles to suck on her soother and is more irritable.  She's now back on full feeds and is tolerating them well on a low calorie version.

We have not received any results from the MRI.  They're trying to contact the liver doctor, but our expectations are low with it being a Friday.  They will likely discharge Hope this weekend and bring us back to see the doctor on Monday.  Hope will go out of the hospital on the low calorie feeds and I'll work her up to her proper level myself.

I almost laughed when the cardiologist told me that Hope would have to remain in Edmonton and that it was too dangerous for her to leave before her Glenn.  He said that was why they were doing the Glenn right away, as it was safer for Hope.  I said, "actually, we're still here because I'm crazy and refused to leave.  I knew she needed the surgery and knew that if I left, she would have to wait too long."  He told me that it was the best decision for Hope and if it was his child, he would have made the same decision.  That was such incredible confirmation for me.  We want to make sure that Hope's doctors all agree on her care and that we're making the best decisions for her.

We'll be moving out of the Ronald McDonald House this weekend and into a basement suite.  Please pray for us as we undertake this project with two kids in tow!  This is the best decision for Hope, we need to keep her isolated.  We'll miss the meals that are often served at RMH, but it's a sacrifice we have to make for Hope's sake.

I feel ready to leave this hospital.  I look forward to seeing more of my family each night and to feel a small sense of normal.  I know that it will be a lot of work to have Hope back with our family, especially without nursing care!  As I listen to our roommates family sneeze, cough into their hands and talk about the little brother picking his nose...I can't wait to get out of here!  The germs are too close for my comfort.  Please pray for Hope's health and protection as we take her out of the hospital some time soon. We're about to enter the next stage of our journey.

Wednesday, 17 October 2012

Saved by Mom!

It's hard to believe we've been in the hospital for 9 weeks, where has the time gone?  The days can be long, but we're making slow progress.

Yesterday they needed to draw blood for Hope's blood thinner levels.  After two failed attempts in her head, they decided to have the vet doctor do it this morning.  The blood needs to be drawn 4 hours after the last blood thinner dose.  As a result, they had to give Hope her blood thinner injection at 4am!  That wasn't the most convenient time for my sleeping schedule.  Then at 8am we were woken up when the doctor came to draw blood from Hope's jugular!  I can't watch when he hangs her head over the bed and draws blood from the neck.  At least it's extremely fast and it never takes more than one poke.

After the blood work, the nurse told me to begin packing up.  Hope was to be moved out of her isolation room and to go back in with the masses.  I asked if she was coming off isolation status and was told that she was not.  They told me that with so many sick kids on the ward, they were putting kids with the same virus together in order to make room for the extremely ill ones in isolation.  This did not sit well and my claws came out.  Hope has no symptoms and should not be exposed to a child that is truly ill.  After fighting for an hour, they agreed to take Hope off isolation and not put us with a sick child.  This is why I don't like to leave the hospital!

We were told this morning that Hope will have her MRI tomorrow.  I don't like to think about her having an MRI after our last experience.  I'm thankful in many ways that they surprised me with this news.  She will be under general anesthetic and will receive contrast as well.  These are both things that give us reason to worry and make us uncomfortable.  We don't have another option and will have to walk through this in faith.  We don't have a specific time for the MRI as Hope is an add-on and could be taken at any time.  Please pray for this procedure and that everything runs smoothly.  Shawn will spend the day here with me as we wait for them to take her.  Please pray that the MRI gives them clear information on what's going on with Hope's liver.

We received some good news today as well.  Hope's surgery has officially been booked for November 7th!  They decided that since she didn't have any respiratory symptoms from her cold, her lungs have not been compromised and her surgery does not need to be delayed.  For this we are thrilled and very thankful!  Only 3 more weeks until surgery.  Please pray for us as this date approaches.  It is so important that Hope does not get sick before this time and we may be pretty stingy with letting people touch or hold her.  I'm apologizing in advance and asking you not to be offended.  A small sniffle would delay her surgery by 6 full weeks!

We are thankful for your continued prayers as we prepare for her procedure tomorrow and the surgery next month.

Monday, 15 October 2012

Patience, where art thou??

I believe that sleep and patience go hand in hand.  If you have one, you have them both.  If you're missing one, you lose them both.  After taking Hope out on a pass, we came back to the hospital around 9 pm.  She had been fairly good all day and seemed to be herself.  As soon as they started running her feed, she began screaming and was miserable.  When the nurse checked her stomach contents, they found her last two feeds sitting in there, undigested.

Once the food was taken off, she seemed a lot more comfortable and began to settle.  The doctor decided she needed to be fed through the night regardless.  She stirred and woke up constantly through the night.  She was so uncomfortable and couldn't seem to get into a deep sleep.

This morning the nurse pulled a full undigested feed from her tummy and decided to stop feeding her.  The doctor on this morning agreed that it wasn't helping her to keep pushing food in.  She's now on a full diet of pedialite.  This is not great for her weight gain, but will give her tummy some time to heal and get better.  She's been having some much needed naps today and appears to be happier without her feeds going in.  They feel that her cold has gone down into her digestive track and is causing all these problems.  They believe it will resolve on it's own over time.

I'm exhausted, and therefore extremely impatient.  When Shawn suggested that her cold wasn't the problem and that we should switch formulas I lost it.  It was almost as if he'd personally insulted me and I responded with everything but love.  When Sadie wanted my attention during her visit and the doctor was here trying to speak to me, she got my angry mom voice.  That voice is making too many appearances for my liking these days.

During rounds we were told that her MRI has been cancelled for this week as anaesthesiology is not willing to touch her until her "cold" is gone.  That means another full week here with nothing to do.  We were also told that we have to get through all her symptoms and THEN wait another 3 weeks before her heart surgery.  That means we are delayed another full week.  I'm starting to wonder if I should have someone bring up our Christmas stockings.

Life seems overwhelming today.  I know that a new day comes with new perspective and that a good sleep can drastically change my attitude.  Lack of sleep, bad news and whiny children is not a reason to speak poorly to those I love.  Please pray that I would find patience, even in my weakest moments to love those around me.  We're all struggling and it's not fair to pretend I'm the only one that had a difficult day.  Please continue to pray that Hope would recover from this bug and get back on her feeds without too much weight loss.  Most of all, please pray she doesn't get another cold before her surgery. We are asking that anyone who plans to come anywhere near us before then, gets their flu shot!  Thank you for caring, even when I sound like a complainer.

Saturday, 13 October 2012

Hope Holly Lincoln

Today was the Heart Beats run in Calgary.  I spent a lot of time training for the run through the summer and had talked (guilted) a lot of others to join Shawn and myself for the run as well.  Over 60 of our friends and family were signed up to walk or run for Hope, Holly and in memory of Lincoln.  I had looked forward to this event and seeing so many people that I care about.

It's been a tough day to miss something I've looked forward to for months.  I've been touched to see the pictures that so many have posted of the event.  I sat and cried after going through the albums.  I'm overwhelmed with gratitude for everyone that came out, and utterly devasted that we weren't there with them.  I know it's silly and I have bigger things to worry about, but it's the little things that really get me most days.

Shawn and I went out together and ran through the neighbourhoods surrounding the hospital.  We were both compeletely exhausted all afternoon, likely a mix of physical and emotional exhaustion.  We wanted to honour those that had given and done the run, even if we were in another city. 

Hope was given a pass in the late afternoon today.  We brought her back to the RMH and spent the evening here as a family.  She continues to not tolerate her feeds and I find it frustrating.  A healthy baby receives a 20k calorie diet of breast milk or formula.  They have been pushing Hope to take a 30k calorie diet of formula to keep up her weight.  It's simply too rich and is often not absorbing and being thrown back up.  I finally convinced them to move her down to a 28k calorie diet, but our issues continue.  Please pray for us as we pressure them to back off a little and give her tummy a break.  We're looking to move her to a 24k calorie diet.  This gives her more than a healthy baby, but doesn't push her so hard.  If we can show them that she continues to gain weight on that, they should let us continue with it. 

I've mentioned before that being in the hospital is easier if you don't know when you're leaving.  Now that I know we should have been discharged this week and weren't, I'm beginning to struggle more.  Please pray that Hope's MRI happens at the beginning of the week and we can bring her home.  I'd like to spend more time with Shawn and Sadie and have Hope with us as a family.

Friday, 12 October 2012

The Common Cold

All the hand washing, avoiding sick people and not letting strangers touch Hope did not work.  She was tested and it is confirmed that Hope has a cold.  Some of you may test positive right now and still feel pretty good.  Hope's body simply doesn't handle the little things, that's why we try so hard to keep her healthy.  They don't believe that she causes a risk to others as she is not coughing or sneezing and has no way to spread her germs.  Regardless, she remains in isolation for the weekend.

Hope has not tolerated her feeds today and has been taken off formula and put on Pedialite.  This will give her tummy time to settle before they try giving her formula again in the morning.  Her belly measured at 47cm today.  That was disappointing, but understandable if her tummy isn't feeling well.  I'm hoping it will be down tomorrow and that she'll be able to kick this quickly.  It's better for her to have it now and not closer to her surgery.  

It does cause some problems with her MRI though.  Until her stuffy nose is gone, we won't be able to find an anesthetist that will work on her.  Probably because they are smart and cautious, for which we are thankful for!  For us, it simply means we might have to stay here longer than we'd liked.  We're looking forward to having Hope out of the hospital and it's more difficult to get through the days when you know you'll be leaving soon.  We're hoping that she'll be able to have the MRI on Monday or Tuesday, but nothing will be booked until she's over the cold symptoms.

Abbey (our friend from Hawaii), spent the day at the hospital with Hope after a sleepover with her!  I was able to wake up with Sadie and spend the day with her.  Shawn came home (RMH) later in the day so I could get back to the hospital as we needed to get set up with oxygen, talk with the doctors about Hope's care and figure out what the plans for her were.  I'm usually ok to discuss Hope's care on the phone with Shawn, but some days I get extremely overwhelmed and need him with me to advocate for her.  

Sadie and I had a pretty good day at the Ronald McDonald House.  They had a fall party for the kids that was very well done.  She got her face painted, some balloon animals made and even made a trip to the magic room!  Ronald McDonald showed up later and did a magic show for the kids.  What an awesome place the RMH is.  They work so hard to make it a fun environment for the kids and it is such a blessing for the parents.  We are truly thankful that this place exists and look forward to volunteering sometime in the future.  

Please pray that Hope recovers quickly and can start eating again soon!  We're enjoying the good sleep in our private room in the meantime!  

Thursday, 11 October 2012

Sleepless Beauty

Last night I laid down on the little parent bed in Hope’s room.  I had Hope in my arms and her wires stretched to their limit.  She slept, safe in my arms as I stared at her.  When she woke up for a minute and looked at me, I was suddenly overwhelmed.  I started talking to her with tears in my eyes.  I told her to fight, to never stop fighting and to spend my life with me.  I told her that she has a testimony that will draw hearts to Jesus and that I want her to share her own story.  

I started to think about the second surgery.  I thought about sitting and waiting while she’s in the OR.  I felt physical pain as I imagined that day, it was almost too much.  I can’t think about it.  I need to take each day as it comes and not think about what I will need to endure in the future.  I’m strong enough for today, not tomorrow.

When I look back at the 6 months we’ve had with Hope and the 5 months we begged God for her healing in the womb, I’m in shock.  I’m in shock that I still get out of bed each day.  That I can laugh with Sadie, and not feel guilty every time I leave her.  That my husband and I still love each other and desire to serve one another.  We still have our moments, more frequently when things are tense.  But in the end, we are still crazy in love.  We’ve grown in the last 6 months and I only see it when I look back.  Who we were on our first stay in Edmonton, is not who we are now.  We’ve become less selfish with one another.  We’ve learned how to serve each other effectively and lighten the load.  Shawn is my perfect match, no question.

God has softened the hearts of many through Hope’s courageous battle.  It’s beautiful to watch and it touches me every time.  Hope can make the strongest man cry and slowly captures the hearts of those in this world.  Even surgeons that began speaking of her as ‘Hypoplastic post Norwood shunt’, now refer to her by her name.  She is a person, but not an average or ordinary little girl. 

I pray that God uses my situation to teach me how to love others while they’re down.  The community that has carried us through this is amazing.  The sacrifices people have made leave me awe struck.  We are not worthy and yet we receive.  That’s exactly the gift we receive in salvation through Jesus as well.  We’re not worthy of it, and yet he offers.  There are days that I feel lucky, like I won the life lottery.  It sounds completely crazy, but I catch fractions of understanding and can truly thank God for our situation.  Amongst all the hardships, we are blessed.        

We were told this morning that with Hope needing the MRI (it was confirmed), we won't be leaving until it happens.  It could take a few days and we'll likely be here until next week.  It's a good thing I never believed we were going to be discharged.  It saved me from a lot of disappointment and prepared me to be here longer.  Hope is still stuffy, although it is clear and doesn't look like an infection.  I long for her to be stronger so I can take her to meet the people that have prayed for her!

Wednesday, 10 October 2012

Isolation Pros and Cons

Everything in life has a good side and a bad.  It's often just the perspective you choose when evaluating your situation.  Hope has been stuffy for the last two days and the nurses have suctioned a lot of yucky stuff from her nose.  I mentioned this a few times to everyone who would listen, but they didn't seem too concerned.  This afternoon, Hope had some diarrhea.  This happens from time to time and is often ignored as well.  With Hope's Glenn being booked, it was too risky to let her get truly sick.  She was moved into an isolation room.

Being in an isolation room means no roommate.  This will allow me to have a better sleep each night next to Hope.  It keeps Hope from the germs of her roommate and requires nurses to gown, glove and mask up before touching her.  This will remove the risk of cross contamination as well.  This is the good side of isolation.

The down side, is losing our passes.  Hope would have likely been discharged tomorrow and will likely have to stay now.  We cannot bring Hope back to the RMH until we know she is healthy enough to be around the other children.  With chemo patients and other cardiac children at the house, it's not fair to bring Hope into that environment until she's healthy.

For the time being, we wait.  Our MRI was cancelled today because the liver specialist and the radiologist don't agree that it's the best test to see Hope's veins.  Until they decide, we are waiting for a decision and will need to remain inpatients.

Please pray against infection in Hope's body.  Praise the Lord we were able to get a feeding pump for our time here in Edmonton.  Pray for our family as we look at different options for housing while Hope is an outpatient.  We're not sure that community living during cold and flu season is a great idea.  As we care for Hope, we need wisdom and strength.  Thank you for continuing to pray for Hope.

Tuesday, 9 October 2012

Going for the Glenn!!!

Today has been an important day in our journey with Hope.  The morning rounds started with lots of talk of discharge as it was written on Hope's chart from the weekend.  I then mentioned all the things we needed; a feeding pump, oxygen, an MRI and a few other things.  The group at rounds knew all these things and were likely confused about how we would discharge Hope as well.  It got us talking about things and putting them into motion, that's the important thing.  

GI was consulted again and Hope will need to have another MRI before discharge.  They want to take a look at the collateral veins that are forming out of her liver to get around the clot that is there.  If they form on thin and weak veins, they could cause a bleed that would be very dangerous.   They need to evaluate these veins and make sure they're safely moving Hope's blood.  We don't love the idea of an MRI after our last experience in Calgary with an MRI.  This MRI wouldn't require Hope to be fully asleep.  They plan to sedate her and keep her fairly still instead.  This is obviously a much better option for her.  The MRI will need to be done while Hope is an inpatient regardless, just to make sure she does well after the procedure.  

Home Nutrition came and verified that Hope will be receiving a pump here in Edmonton to go out on.  They are coming tomorrow to train me on using it and get everything set up with that.  Tonight she's going to be hooked up to an oxygen test that will help get the ball rolling for her home oxygen.

I spent the afternoon snuggling with Hope, taking her for a walk around the hospital, reading and trying to stay distracted.  I might have eaten enough skittles to feed an elementary school in the process!  It made the day go by and I didn't feel as anxious as I'd thought I would.

Around 4:30 I started watching for a cardiologist to come and give me a report from the meeting.  Instead, Hope's surgeon walked into the room and began washing his hands.  He came over and started looking Hope over and asking me questions about her current health.  Dr. Ross then said that they don't want to wait for Hope's surgery any longer.  They've decided that the cold and flu season is too risky for Hope in her current condition.  They want to wait until the beginning of November to give her body time to fully recover from her last procedure though.  She will be scheduled for the week of November 5th, no exact date yet.  If Hope's colour continues to degrade or her oxygen levels are getting lower, they'll simply bump up the surgery date and take her in immediately.

That means our family will be settling in to Edmonton for some time.  It's tempting to drive back to Calgary to sleep in our own beds and have the comforts of home.  We know that it's best for Hope to stay with the team she's been working with for the past two months and not to bounce around a lot.  She'll continue to be followed closely by the GI and Cardiology teams here until her surgery.  We are thankful to have a plan and look forward to spending time with Hope out of hospital, no matter which city we're in.  

Thank you to everyone that prayed for us as we waited for this decision.  We feel confident that God was in control and that this is the best plan for Hope.  We should all be sleeping at the same address by the end of the week!  

Monday, 8 October 2012

Thankful Today

Throughout this journey I have been reminded that God does not only deserve praise when things are going well.  When Hope is doing well, people praise God's goodness and his faithfulness.  When she's not doing well, people simply say they are praying.  God has taught me to praise him at all times, it doesn't mean I have to like what He's allowing to happen.

Hope did very well this weekend.  Her stomach has remained at 44.5cm and she appears to be much more comfortable than she was previously.  She has tolerated the change from breast milk to formula beautifully.  It's such a relief to be finished pumping and to know that my daughter is still receiving and tolerating the nutrients that she needs.

We were blessed to have a friend, with nursing experience, to help us this weekend.  We know that Hope is well cared for when she is with her and are able to get out.  On Sunday we were able to go and have Thanksgiving dinner with Shawn's family in St. Albert.  We left Sadie there for the night and had some time alone in the evening.  This morning we got out of bed at 11am!  I'm not sure when that happened last, it was simply incredible.  We even got out in the afternoon to spend some time together. In true Shawn and Amy fashion, we went for Indian food!

I'm back at the hospital with Hope now.  She's asleep in her crib and I'm about to get ready for bed.  Another night without a roommate, I'll likely sleep very well tonight.

Tomorrow is an important day for us all.  We are asking you to pray as the doctors and surgeons meet to discuss Hope's second surgery.  The meeting will take place in the afternoon here and will be 3-4 hours in length.  There are rumours of a potential discharge for Hope tomorrow.  She is currently stable enough to return to the Ronald McDonald House.  The only things that may hold us back are the logistics of her equipment.  We still need to have a feeding pump secured and may need oxygen as well.  Hope is currently off it, but seems to go back on it once every 24 hours for a bit.

If Hope's surgery is scheduled to take place in the next 4 weeks, we will continue as outpatients to the cardiology clinic here.  If the surgery is not happening that quickly, we'll move our family back to Calgary and return to Edmonton later.  We don't have any say in this decision and are trusting God to intervene in the meeting and help them make the best decision for Hope.  We will be disappointed if Hope's surgery is not scheduled in the next 4 weeks.  I would feel more comfortable caring for her if she had her surgery.  Please pray that we'll have a peace either way and be okay with the decision that is made.

I hope you all had a fantastic long weekend and were able to spend time with family.  Thank you for taking the time to continue checking on Hope.

Saturday, 6 October 2012

Lovely Liver Doctor

"I lift my eyes up to the hills.  Where does my help come from?  My help comes from the Lord, the maker of Heaven and Earth!"

I'm sitting in Hope's room tonight, our roommate from last night was taken into ICE, and we're all alone.  I've chosen to take advantage of the rare opportunity of having the room to ourselves.  We got a little CD player for Hope to listen to music.  I'm laying here listening to a mixed worship CD that someone made for me months ago.  As I thank God for all the wonderful things he's done in our lives, I'm overwhelmed.  He has sent the most incredible people to make our burden lighter.  In that moment my nurse walked in and named the band.  Another person next to Hope that loves Jesus and believes he can heal her.  Beautiful.

Every day I am reminded that God is doing more than I know.  If I knew the full extent of what he was doing in our lives, I would be too overwhelmed.  This journey is not easy, some days I don't think I'll make it through.  I'm learning that I can't do this, I'm not strong enough and I love Hope too much to not feel the pain of watching her suffer.  When I reach my lowest point, I realize that I'm not surviving and I'm not strong.  It's in those moments that I see God, I see evidence of Him moving through Hope's life and I feel privileged to be apart of it.  In those moments the burden is lifted and I realize that all I have to do is love my girl, I'm really good at that.

This morning was a bit crazy.  The baby we roomed with overnight was not doing well.  She screamed a lot and was clearly in pain.  After 4 straight hours of screaming in the morning, a whole team of doctors were around her and decided she needed to go to ICE.  I ached for the family and especially the child.  By the time things had settled and the cardiologist got around to Hope, it was after 12.

While I waited for rounds, I had a meeting with the liver specialist here.  I was encouraged after I spoke with him.  I've been worried about Hope having to transfer back to the GI team in Calgary eventually.  If her fluid remains after the next surgery (something they feel strongly will happen), I don't want to leave the GI team here.  We had such a poor experience with GI in Calgary and it broke my confidence in them.  The doctor here assured me that my experience would be better with the liver specialist there and promised to personally refer Hope.  My mother heart breathed a sigh of relief.  He shared that Hope's clot in the liver could cause her to have internal bleeding.  This would be pretty bad and gives us another specific thing to pray against!  We talked about a lot of specifics for the 3rd surgery as well.  It's a lot of medical specifics and I won't bore you.  As for the Glenn (2nd surgery), I asked him what he thought about her having it.  He said that he was totally in support of her having it and felt that she would do decently well, although she would struggle more than others would.  In that moment, I felt hope for our Hope and felt more confident for the meeting on Tuesday.

When they finally rounded on Hope, the doctors were happy with her current condition.  They took her off one of her heart meds.  I still find this unnerving, but am trusting them in this decision.  She is on less oxygen and seems to have more energy.  They agreed to let me take her out for the afternoon!  It was so nice to have her at the house with the family. Volunteers came in to make a thanksgiving dinner for everyone, it was great.

Hope is now on her regular feeds that run every 3 hours.  She has tolerated them amazingly and appears to be doing well on more formula, only one more day with breast milk.  Thank you for praying and for having a huge part in her life.  Be assured, when our sweet Hope turns one, I am going to throw a party to celebrate the miracle of her life.  You are all invited, I mean that.

Friday, 5 October 2012

Thanking God

In honour of Thanksgiving this weekend, I'll tell you about some of the awesome things that Hope has done in the last day.

Hope was taken out of ICE and moved to the ward today!  She is now in a room with a little girl that has the exact same heart condition.  They appear to be trying to out scream each other, hopefully this stops before midnight!  Hope's belly measured at 44.5cm this afternoon!  That is the smallest it's been in a long time without any help from protein infusions.

Our prayer has been that God would help Hope to get rid of some of the fluid build up in her abdomen.  It appears that's exactly what He's doing.  She is making so much progress without needing to be on the infusions.  Being only 4 days post-op, she's doing SOOO well.  I can't find any reason for Dr. Ross to deny doing Hope's surgery.  She has proven that she has a lot of fight in her and is ready for the heart surgery.

Over this long weekend, we are asking you to pray for the meeting on Tuesday.  That is when Hope's surgeon and the cardiologists will make a decision about her second surgery.  The date they set will leave our family with the decision of where to live in the meantime.  If Hope's surgery happens in a month or so, we would stay here to continue her treatment with the GI team in Edmonton.  If they decide to delay the surgery for a long time, that will be more difficult.  If that happens, we may have to come back to Calgary in the interim and be followed by Calgary's GI team.  This is not the ideal option for Hope.  Please pray that whatever decision is made is best for Hope.

We are trying out some bolus feeds with Hope this evening.  She's on her 3rd feed and seems to be tolerating them well.  With all the procedures, formula changes and surgery, Hope has been on continuous feeds for a long time.  Please pray that she continues to tolerate them and gets back on a feeding schedule.

I am pleased to say that I made my goal, Hope stayed on breast milk until her 1/2 birthday!!  We are now on our last 3 days of breast milk and are transitioning Hope to full formula feeds.  She's done very well so far.  Please pray that she continues to accept the new feeds, it's her only option!

I've asked about the possibility of taking Hope out on a pass for a few hours this weekend.  They haven't agreed to it at this point.  They are considering it, if Hope does really well over the next 24 hours.  I would love for Hope to get some fresh air if possible.

We continue to be so touched by the churches and total strangers that continue to pray for our family.  I look at the people that follow the blog and wonder who many of them are!  We see the evidence of people praying and ask you to continue, it's making an impact.

Thursday, 4 October 2012

6 Months Old!!

Today is a milestone worth celebrating in Hope's life, she's 6 months old!  As the doctors continually remind us of the fragility of Hope's life, I decided we needed to celebrate today.  When Sadie was a baby, I took pictures of her every month with signs to say how old she was.  Hope was not doing well and was intubated on her 1 month birthday.  It didn't feel like the time to make a sign and take a picture.  I never got back into it and have missed the first 5 months.  No longer!  I will celebrate every day and each month with this little girl.  I picked up cupcakes for the staff today and made sure that everyone knew Hope was 6 months old today!  They even got her a little princess wand.

Hope did well through the night and appears to have full and equal function on both sides of her body.  They have decided not to do an MRI at this point.  If she starts to show signs of a stroke again, they'll do an MRI at that point.  Hope's colour became poor again this afternoon and she's been a bit sweaty all day.  They've decided to do an echo tomorrow and make sure her heart function is strong before the long weekend.

Hope will stay in ICE again tonight and they'll make a decision about where to move her tomorrow.  We feel more relaxed with Hope here and are fine for her to stay as long as they feel it's necessary.

Please continue to pray for Hope's medical team as they look for answers to some of the weird things she's doing.  Please also pray for our family as we balance our lives while my mom is back in the USA.  We really appreciate having someone in the room each morning to wake up with Sadie.  We know that my dad misses her like crazy though and are happy to share.  Thankfully our friends are here as well and have been an incredible support with Sadie during the day.  This would not be possible without the support we've received and we are truly thankful.

Wednesday, 3 October 2012

On the Edge

I was hoping for a boring day, but that wasn't what Hope had planned.  Hope was very tired in the morning when we arrived and slept in my arms until rounds started.  Rounds went well today.  They talked about presenting Hope next Tuesday at the cardiac conference to get us a surgery date.  It doesn't sound like it will be for another month though.  They want to give Hope a month to heal from her hernia surgery.  It looks like Edmonton will be our home for a while.  As she gets stronger, we should be able to do some out patient care at the Ronald McDonald House.

Hope was sleeping all morning and seemed fairly settled.  Around noon she started to get agitated, as she did yesterday, and was scratching her face.  They gave her a dose of Benadryl to see if that would stop her from feeling so uncomfortable.  I was standing over Hope and began to notice that her colour looked poor and she didn't seem right to me.  She opened her eyes and stared up at the ceiling without blinking and was unresponsive.  Her pupils were extremely small as well.  I called the nurse over and Hope continued to be unresponsive and would often stare at the ceiling without blinking.

The doctors agreed that something was not right.  The idea of a stroke was brought up and my heart dropped.  They also worried about Hope's liver function.  If you have too much ammonia in your body, it can cause an altered mental state.  They drew blood from Hope's scalp and ordered a STAT CT Scan.

The blood work has come back normal so far, but we are still waiting for some of the tests that take longer.  Her ammonia level was at the high end of normal which could account for her episodes.  The CT scan did not show any bleeding or swelling of the brain.  This was great news as it rules out a lot of the major problems.  A stroke would not show up on the scan this early.  We are praying that Hope was reacting to the all the protein infusions and other things that have been done that would affect her liver.  We ask you to pray that whatever has happened will not be permanent.

Hope's colour improved by the evening and seems to be more like her usual self again.  She remains in ICE at this point for close observation.  The journey with Hope has constant ups and downs.  It's never easy and although we're tired, but we're giving it everything we've got.  She's worth every bit and more.

Tuesday, 2 October 2012

Searching for Joy

Today was not a great day for Hope or for me.  Hope seemed to settle well last night and was doing surprisingly well after her surgery.  This morning she was agitated and was sleeping constantly.  By noon her blood pressure began to plummet and her oxygen levels continued to dip.  She is now on 16 times more oxygen than she was last night!  That sounds like a ton, but she was barely on anything when she went to sleep last night.  It will take some work to wean her off her new oxygen levels though.

Hope was moved into the ICE (step down from ICU) to be watched more closely.  She was given a lot of fluid to see if she was simply too dry.  It appears to be helping and her blood pressure has come back into a more normal range.

The hiccups with Hope are tolerable, we almost expect them and are able to stay decently calm.  The staff seem to react quickly and keep a close eye on Hope.  She has proven that she can't be trusted and can change quickly.

The most difficult thing today has been the frustration of this entire situation.  The doctors continue to remind us of Hope's fragile condition and their lack of faith that she'll live a long life.  In many ways I feel like they have already decided she will die.  With this in their minds, no one wants to be the one that tips the scales in a negative way.  As a result, Hope's heart surgery is being avoided at all costs.  We do not want Hope's surgery to be an emergency procedure that is done as a last resort.  We'd like her to receive it while her body is still decently strong and she has a stronger chance of survival.

It is so painful as a mother to feel like you have to truly fight for your child's life.  The weight of the responsibility is almost crushing and I was feeling very down today.  I'm emotionally exhausted and looking for a plan to be made.  I need to know that Hope is not being forgotten and that she is a priority here.

We want what's best for Hope and nothing less.  Being here in Edmonton is not easy on our family, yet we are willing to stay as long as we need to for Hope.  There are so many obstacles with Hope leaving the hospital and being discharged to the Ronald McDonald House or being transferred back to Calgary as we wait for the heart surgery.  Hope needs oxygen and a feeding pump, and apparently this is a very difficult thing to arrange because of "the system" that exists.  Mind-bogging to say the least.

We still have no idea what will happen next, but we are worried and would like you to pray that Hope is the focus of the decision.  We pray that what is done is best for Hope and nothing less.  Please also continue to pray for us, we need to be encouraged today.

Monday, 1 October 2012

4 Hernias- 2 DOWN!!

Today did not start out too well.  I had a terrible sleep and did not wake up ready for a long day.  The doctor came in to start Hope's IV in the morning and was successful on the first poke.  This was a relief, although it is always hard to watch Hope scream through the process.  Hope was so happy and playful all morning long.  She was playing with the toys in her crib and her soother chain for hours.  We spent some time snuggling and at times I forgot what the afternoon held for us.

Just before noon we heard a page that OR was headed to our room.  We knew Hope was going to be headed down and my stomach instantly began to turn.  There was no longer anywhere to hide, my sweet baby was going back into the OR.

We were taken down to a part of the hospital we've never seen before.  Hope's surgery was going to be done in the day surgery clinic because it was a general surgeon that would operate.  We waited in the hallway until our anesthetist came to speak with us.  It was a difficult conversation once again.  She was honest in saying that she did not want to put Hope to sleep.  She felt the risks were too high with the condition of her heart.  She reminded us again of all the risks involved, but assured us that it was our only option.  She kept repeating how dangerous this would be for Hope.  I started to feel really agitated and had to bite my tongue so I wouldn't say, "we KNOW, do you think we want to do this?"

Our surgeon came by right after and continued to remind us of how risky this procedure was in Hope's case.  She also reminded us of the risk in not doing the surgery.  Unfortunately Shawn was not able to walk Hope into the OR as we have in the past.  I had to hand my baby girl to the nurse and watch her walk away, not my favourite moment of the day.

I'm not sure what most mothers do while their child is in surgery.  I like to stay busy and be as distracted as possible.  We decided to go out for lunch, somewhere that would take awhile and make the time go by quickly.  After lunch we sat in the waiting room across from the PICU.  I really don't like this area of the hospital.  I have never sat in that room for something fun or exciting.  Each time we are there waiting while Hope is in the OR, being airlifted or taking a break from long hours next to her bed.

Hope's surgeon walked in shortly after we arrived.  Hope had done very well in the surgery and was being wheeled into the PICU right behind her.  She stopped them for a moment so we could see her sweet face.  She was already awake and extubated, still very sleepy though.  The anesthetist and the surgeon were both pleased with how well she'd done and we praised God for the very fact that she was breathing!  While fixing the hernia on the right side, they discovered another hernia on the left and were able to fix that as well.

Hope spent 4 hours in the PICU before she was stable enough to be transferred back to the ward.  She had another reaction to the anesthetic.  They don't seem to be getting any more severe or any clearer as to what causes them.  She is truly a mystery and may react every time she is put to sleep.

Hope is back in her old room on the ward and seems to be doing fairly well.  She is uncomfortable and getting medication for pain.  They had hoped that basic pain medications would be enough, but Hope made it clear that she needed something with a bit more power!

We are relieved that we have crossed one of the many challenges ahead of us.  Please pray with us for some important specifics:
- that the fluid in the abdomen would not increase while she's healing.  This could cause the stitches to rip and push the hernias back out.
- that her body would heal quickly and without causing stress on her heart.
- that she would not clot as a result of anything that was done today.
- that the reaction to the anesthetic would not become worse over time, or cause any further trouble tonight.
- that Dr. Ross would make the best decision regarding Hope's next steps in regards to her heart surgery.

The next few days will be very important as they evaluate how Hope has tolerated the surgery.  The surgery today was more simple and less invasive than the heart surgery that she still needs.  If they run into complications at this point, the heart surgery won't be considered for a long time.  Thank you for praying her through today, please continue to pray!