Friday, March 8, 2013

Day 16, 17, 18: Winnipeg

March 5-7

On February 23rd I received a message from Dan’s mother that really put my faith to the test.  In it she revealed to me something that happened to her in the prayer room at the International House of Prayer.  She had asked God to speak to her as she opened her Bible… her prayer was not for Him to speak to her about anything in particular, but just to speak to her.  As she opened her Bible she felt the Holy Spirit telling her to pay very close attention to the first verse that she saw.  It was 2 Kings 4:36-37 “Then Elisha summoned Gehazi, ‘call the child’s mother!’ he said.  And when she came in, Elisha said, ‘here take your child!’  She fell at his feet overwhelmed with gratitude.  Then she picked up her son and carried him downstairs.”  Dan’s mother reminded me that when Elisha first arrived, the child was dead… and Elisha after praying to God, through the power of God, brought the child back to life.  She then went on to prophesy and state that she believed that I would pick up Eliana from the hospital and carry her home.

This is exactly what happened.

Everything has been a blur since Tuesday morning when we got the word that we would be discharged and sent home. Yes, sent home and not to a hospital in Winnipeg. It is hard to believe that three days have flown by so fast; discharge orders, prescriptions to be filled, packing, and all the logistics of getting our little girl home have consumed us.

We are so thankful to be home, now we have to learn to live without the crutch of the hospital.

Tuesday was spent running; running from one appointment to another with Ellie to ensure that we were both physically and mentally prepared for what was to come. Like everything else on this journey it was a bit overwhelming, but in the forefront of our minds we knew that this meant Ellie was doing better and her condition would be manageable at home.

The flurry of activity left us little time to update anyone other than family on Tuesday.

We arrived home very late Tuesday night and were greeted thankfully by Dan's mother and Manfred. Dan was a wreck for most of the flight, he just could not sit still, and every noise that Ellie made the more anxious he got. Thankfully Ellie slept through most of it.

Getting home was a profound reminder to both of us of what we have all gone through over the past few weeks. Walking into Ellie's room made us very emotional. However, it felt like there was only a small window of time to get things ready for Ellie's next feeding and her next round of drugs so we pulled ourselves together and went into "business" mode. Ellie's drug regime is made up of four different medications taken at specific time intervals throughout the day. So we spent much of the night/morning trying to get settled and develop a workable schedule for our next few days. Three am comes fast when you are running on pure adrenalin.

To say that we slept lightly would be an understatement.

Wednesday would be the start of our new life together. Thankfully the nurses in Edmonton had Ellie well-conditioned to a strict schedule of feeding and medicine taking. So she was quite content with everything as long as we kept to this schedule. Dan on the other hand was really struggling with the build up of guilt he was feeling for not being here when this ordeal began. For most of the day he did not sit down, instead he tried to clean every surface in the entire house and make things as comfortable as possible for Ellie and I. With the exception of Dan feverishly cleaning it was a very low key day. My sister and family stopped by to drop off some much need groceries and to introduce Dan to his new niece Eden. It was a great to see them and the joy in their face when they got to see Ellie laugh and giggle.

Sleeping Wednesday was better than the previous night but not by much. Ellie was experiencing pretty bad gas, which normally is not a big deal, only we are both so sensitive now to the slightest deviation from her “normal” that we both begin to freak out a bit. Logic tells us that this will eventually subside, hopefully soon for everyone’s sake.

In anticipation of Dan going back to work on Friday we tried to treat Thursday as a typical work morning. We worked well as a team feeding her and getting her morning medicine ready but by 8:30 I was completely exhausted. Dan graciously suggested I take a much needed nap and he would spend the morning with Ellie. It felt like he is finally starting to relax and act a bit more like himself.  

 The rest of the day was spent organizing space for Ellie’s medicine, moving her crib closer to our room, at least temporally until we both relax a bit, and trying to get done all the domestic things we need to in a typical day. It was trying at times while we assessed what our daily priorities should be, domestically speaking, and what in fact we actually had time for. One thing that we have not had to worry about thus far is food. Our families, church family, and friends have been incredibly generous with dropping off homemade meals. We easily have enough dinners to last us into next week while we fully acclimate to our new lifestyle. Thank you everyone for this amazing blessing.

Tomorrow will be the real test of everything as Dan goes back to work and we have our first Winnipeg Doctors appointment. This will give us a good indication of how we are doing with Ellie’s feeding and medicine dispensing, we hope.

Our two main goals for the foreseeable future are; continued weight gain for Ellie and for us to relax and not treat our little girl like she is in a bubble.

We apologize for the delay in this update and thank everyone for their continued support.

Sunday, March 3, 2013

Day 15: Edmonton

Friday and Saturday March 1 & 2

The past two days have been a whirlwind of joy and excitement. Our new room has been very empowering. Ellie has a daily volume of food that she needs to eat yet we are not on the rigid feeding schedule of the NICU anymore. We are able to pick her up and walk around the room as much as we want with little concern of tubes, wires, and other patients. Walks around the hospital are now done without our entourage of nurses. The greatest change however has been in Ellie's personality.

Before all of this craziness when asked to describe Eliana's personality we would typically use words like laid back, content, quiet, mellow, disinterested in things, but interested in watching people. Like we have mentioned in previous posts, Ellie was typically quite stingy with her smiles and we had never heard her giggle. Since our move out of the NICU though we have been showered with smiles and giggles. We have both spent literally hours just playing with her on her back and revelling in joy with each smile and laugh she produces.

For months we have been hearing about our friends kids reaching age appropriate milestones that Ellie never seemed to reach and now we believe that this might be possible for us too!

Our biggest obstacle now to cross is her weight gain. Ellie is finally back to her intial weight from over two weeks ago however, since moving to bottle feeding only her weight gain has not been consistent. What her doctors want to see is that she is strong enough to eat the amount of calories she requires to grow and ultimately catch up to a more age appropriate weight. Everyone appreciates that Ellie is always going to be on the smaller side due to her genetics (sorry honey) but we just do not want to exasperate this by her having to work to hard to eat.

Back to celebrating the good stuff. Saturday we were able to take Ellie out of the hospital on a six hour day pass... our first adventure out of the hospital with no medical help! On Friday when we learned about the prospect of this "day pass" we were very excited and a little nervous. For the past fifteen days we have been surrounded by doctors and nurses, all of whom have been trained to identify the slightest change in her condition, but with the "day pass" this responsibility would be solely ours again. Our other source of nervousness was due to the fact that we had absolutely no supplies or equipment such as a car seat, crib, bouncy chair, or even anything warm for her to wear outside. Thanks to the generosity of the people around us this concern was quickly alleviated.  My uncle Jock and auntie Elaine arrived with a new car seat that a family from their church was able to lend us and our wonderful nurses were able to hunt down a few warm sleepers and blankets for us to use.

We did not do anything earth shattering on our first excursion, just the fact that we were out of the hospital was exciting enough for us. With Jock and Elaine we meet our cousin Jon and all went for an extended lunch. The banality of our time together was so incredibly comforting that for a short time we were able to forget about the past few weeks and begin to see what the future might be like.

Back at the hospital the three of us were rather worn out from the evening of fun, however it was not over yet. Earlier in the day we had arranged with our close friends Greg, Cheri, and Mackenzie to FaceTime now that we had access to wifi in our room. This was yet another comforting and encouraging time for us.

The last two days have been wonderful.

Saturday, March 2, 2013

Day 14: Edmonton

Thursday, February 28

The long hallway on our way to the NICU seems to run forever. We count the steps as we near the entrance waiting to cross that invisible barrier where our  stomachs start to do cartwheels.  Sometimes it's in anticipation of seeing her smiling face and other times it's anxiousness in not knowing how her night went.  This morning it was more the former.

Last night we talked a lot trying to process our conversation with the "heart failure specialist". We came to the conclusion that we were going to understand the severity of the situation, but we choose to celebrate the victories of healing instead of dwelling on the unknown!  We received a text from our pastor reminding us of how far she's come and how happy she is right now. He's right, it's neat to see how cheerful and joyous she is considering what she's been through. Ellie was always stingy with her smiles and it makes
our hearts happy to hear her giggling and always smiling when she's awake. What a drastic change. What a blessing!

Today was a very exciting day... We moved out of the NICU and onto the Pediatric Cardiac Floor.  We went from a room full of hustle and bustle to an incredibly quiet and relaxing environment.  We ourselves are finding it hard to stay awake without all of the alarms going off and nurses calling out.  Thankfully there is a single bed beside her crib that we can take turns napping on. Here we are able to be quite independent and after our long hospital stay it is graciously accepted.  This should be a perfect transition area for us as we begin to get comfortable with our new life.
As far as medical updates, Ellie is now only being bottle feed. The last of her IVs were taken out upon our arrival in the new unit, she now is only attached to her heart monitor. There is so much more space in our new room to move around, we are very grateful for the freedom. We also have access to many toys and bouncy chairs to help us entertain Ellie. Though I think Ellie was more pleased with the quietness of our new room than the new toys for she spent most of her time between feedings asleep.

As an added bonus today we received a very thoughtful care package from some friends in Winnipeg. Apparently there was some concern over Dan's reading choices for Ellie, so they included a few age appropriate books for her. Now the only problem is the two beautiful books they included have made us both cry multiple times today. Ellie seemed to really appreciate the gesture.

Our new goal is to get a day pass to leave the hospital with Ellie. We are told that if she remains stable for the next few days we might get one this weekend. It is wonderful to have a tangible goal like this to strive for.  Further, we feel that this will be a significant step forward on our ultimate goal of getting home.

Friday, March 1, 2013

Day 13: Edmonton

Wednesday, February 27

The hospital is a tale of two emotions, elation that a loved one has made a recovery or devastation that they have not. The various scenes are played out in the labyrinth of corridors that connect the different wards. The tears flow simultaneously and in complete oblivion of one another.  Yesterday we too were oblivious to the drama around us as we walked our little girl, our tears were of
elation. Today, our tears were of devastation.

The morning was busy. We took Ellie to the ophthalmologist to see if there might be a connection between her eyes and her heart condition. Everything looked normal, a little under developed, but the ophthalmologist felt that it was easily explained by how sick she has been. He also looked at her brain MRI, which again looked completely normal. All of this was good news.

When we returned to the NICU we were greeted by the "Heart Failure  Specialist". This was the doctor that all the other doctors had been talking about. He was the one that ultimately would say whether or not we should stay in Edmonton or go home to Winnipeg. He was also the one who would assess Ellie for a possible heart transplant.

Transplant.   Hearing that word today was like a sucker punch in the gut. A million questions filled my head... Why? Isn't she doing better? Sure we knew this might be a possible outcome but why haven't we had this conversation before now? How much longer do we have to stay here? Is there ever going to be an end to this madness? Unfortunately no one had definitive answers for me.

Did you know that transplants aren't done entirely the same way as you see them on tv?  There isn't one magical master list with every possible patient ranked in order. It is a series of tests and stages that a patient goes through. First they are tested to determine their suitability, that is, will their body handle the introduced organ or not.  If they are found to be a probable candidate they are then assessed as to the urgency of the transplant.  There is no official list, just varying levels of procedures and steps.  The cardiac team in Winnipeg is not equipped to do this type of procedure on an infant so they want the team here to start the work up before we can go home. We were assured numerous times that this was just a precaution.  Still, what a shock to the system.
Our meeting with the  "Heart Failure  Specialist" lasted over an hour. It was a sobering and very frank discussion about Ellie and her future. Being fairly analytical people, what we really wanted was some sort of certainty that we could hold on to. What we had to settle for was the statistical breakdown of probabilities from a doctor with decades of experience. What he told us was, infants with diagnosed cardio-myopathy have a 50% chance of needing a transplant within the first twenty four months of their lives. After this age the rate of transplant begins to fall. They have a 20% chance of making a full recovery. Which leaves a 30% chance of recovery with some sort of heart aid, either drugs or mechanical. The numbers don't look too bad until you start considering the number of heart transplants actually preformed on infants and the likelihood of finding a match for her. With the numbers and probabilities factoring in our heads, all the joy of our walk yesterday felt like a distant memory.

At the end of our talk he left us with this, Ellie looks to be a good candidate for a transplant in the future.  Right now however, she is not in need of one. We will have to be vigilant in monitoring her and have regular checkups to assess the health of her heart. Her remarkable turnaround from just a few weeks ago has everyone optimistic that Ellie could fall in the 50% category that does not require a transplant, but what we've learned from our experience thus far is that nothing is certain in the cardiac world.

Thursday, February 28, 2013

Day 12: Edmonton

Tuesday, February 26

We spent some time last night re-reading the comments left for us on this blog. It was humbling being reminded of all the support we have received from family, friends, and complete strangers. Thank you. There have been times where both of us have needed an extra encouraging word or a comforting verse and collectively you have been there at the right time. You have made us laugh, cry, and summon strength when needed. Your timing has been impeccable. Your prayers and thoughts throughout this journey have ensured that we have never felt alone. So again, thank you.

Well, enough sap...

Today was simply amazing. To think of how far we have come in eleven days is unbelievable. This morning all of Ellie's IV heart drugs were stopped, so she is only receiving one orally now, and her vitals are still perfectly stable. Her food intake is now being increased by 5 ml every three hours with the goal of removing her IV intake of nutrition supplements tomorrow.

Ellie's mood was great all morning as she seemed to be obsessing less over her food. With all of her improvements and the reduction of her IV's our nurse was able to convince her team of doctors that she needed a little fresh air. Yes that is right, we were able to take her for a stroller walk out of the NICU.   Of course we would be accompanied by our own entourage of nurses pushing various monitors behind us, but we were ready to take what ever we could get. I was taken aback by how emotional this simple activity actually made us both.  I suppose the normalcy of the moment was something that we never thought we would experience again... let alone so soon.

Tuckered out from our little adventure, Ellie fell promptly to sleep when we returned to the NICU. The success of this first foray into the great outdoors ensured that we would get another in the afternoon. Armed with this information we went for lunch to recharge ourselves.

The afternoon was much the same. Ellie's food intake continued  to increase. She was no longer able to swallow her food in a mere two gulps, it was taking her at least 30seconds now. Our afternoon walk was much longer and our entourage gave us significantly more space then they had in the morning. To anyone passing us we actually looked like a happy family out walking our little girl.

For the first time in days I did not feel like my shoulders were touching my ears. I think we were both starting to relax a bit and subsequently we were more tired than normal. Maybe tonight we will fall asleep instead of simply passing out.

Wednesday, February 27, 2013

Day 11: Edmonton

Monday, February 25

We woke today almost feeling refreshed and ready for a new day.  The morning anxiety we had experienced over the previous ten days felt much less as we made our daily migration to the hospital. It sounds flippant, but it was the first time that we anticipated an "easy" day. The uneventfulness of Sunday had us feeling confident and ready to face the day.   Collectively our emotions were more settled and we were ready to focus all of our positive thoughts and prayers on Ellie.  We looked forward to another day of the same and we weren't disappointed.

When we arrived Ellie was just waking from a sound ten hour sleep and she was ready to entertain all the passing nurses. Dan was very happy that her signature mohawk hairdo had lasted the night and it drew many comments from all who passed by. Everything was rather surreal, if we took away all the tubes and monitors it almost felt like a normal morning.

Her feeding over night had gone very well so the feeding goal for the day was to increase the amount she received by 1 ml every three hours. Unfortunately this minuscule increase did little to alleviate Ellie's hunger. As a result we spent much of the day playing and keeping her occupied in between feeds.

She was able to relax and have two catnaps while in our arms throughout the day and one good solid nap by herself  in the late afternoon.  These were her first "sleep aid" free sleeps since we had arrived. More and more she is returning to the baby that we have spent the past thirteen weeks getting to know.

The day simply flew by and we were both exhausted from coming up with creative ways to entertain her with the surrounding medical equipment. To celebrate the amazing day we ordered pizza from our favourite halal pizza place and tried to relax ourselves.

Our prayers continue to be that we  stay on this current course of recovery.

Tuesday, February 26, 2013

Day 10: Edmonton

Sunday, February 24

So Saturday was rough. The events of the day  had a profound impact on how our day began today. After our fitful sleep we were both incredibly anxious to see how the night had gone. We basically sprinted from the hotel to the hospital, yet the ten minute walk to her station still felt like it took an  exorbitantly long time.

We arrived to find Ellie very drowsy. She had been give a fairly strong anti-anxiety sedative in the middle of the night to help her finally get some sleep. We were both very thankful that nothing new had changed in the few hours we were away recuperating.

The plan for the day, at least our hope for the day, was for nothing new to happen. A boring day is what we needed to encourage our spirits. 

During morning rounds the doctors decided to reintroduce food and see what happened.  This seemed like a good idea at the time but as she started feeling better throughout the day, it only seemed to aggravate her more.  If this is our biggest concern for the day, we are laughing.  Therefore our day consisted of entertaining, singing, rocking and anything else we could think of to take her mind off of food.

It was a long day as neither one of us wanted to leave her bedside while she was awake.  We took turns going for lunch and the nurses finally talked us into leaving together for dinner.  On our return we found Donna, Ellie's favourite nurse, and it was a fantastic surprise! We were able to sponge bathe her (which she loves) and Dan was able to finally fix her hair the way he likes it!  She was given a sedative to try and "reset" her sleeping patterns.  (One of her drugs causes her to be anxious and the weening of this drug is causing her some issues.)

About 10 minutes after the administration of the sedative she passed out so we went back to the hotel and did the same.

Monday, February 25, 2013

Day 9: Edmonton

Saturday, February 23

The song with the lyrics, "one step forward and three steps back" was stuck in a repeating loop in my head last night as I tried to process the events of the day. In reality I am sure that things did not get as bad as I thought they did, but when your emotions are in such a delicate balance any perceived regression feels earth shattering.

Saturday started out amazing. Ellie was laughing and giggling for the first time in almost two weeks. She was eating like a rockstar. We were taking turns holding her. She and I were even able to pick up where we left off with "The Great Gatsby", take away all the beeping from the surrounding infant stations and it almost felt like we were home. Mel too was in her glory, holding her little girl smothering her with kisses. When the team of doctors came by there was even talk of moving her out of the NICU into a transition cardiac ward. It was truly unbelievable how well everything seemed to be going. For the first time I think we both felt that there might be a light at the end of this dark tunnel.

However, we were quickly reminded of the gravity of our situation when the baby girl, Hope, in the next bed began to code. Doctors and nurses from every corner of the NICU quickly converged on her bed. Everything around us seemed to stand still with the exception of the doctors skilled hands. We and the other parents ceased to exist as they worked. Collectively we held a breath. Our hearts went out to Hope and her family as we watched. I struggled with an overwhelming feeling of guilt as I was thankful that this was not happening to Ellie. I felt terrible for these thoughts. For Mel this was too great a reminder of what she had gone through on the previous Saturday in Winnipeg so we both agreed that we needed to leave and get some air.

When we returned after lunch, Ellie was still awake, the nurses were trying to settle her for a nap with little success. It was so crowded in our area with the arrival of new sick babies and the continued fallout from Hope's earlier coding that the nurse suggested we take another break and get some rest. I can only imagine how tired we both looked.

We headed back to our temporary home and literally passed out. It was the ringing of our phone that eventually woke us. Groggily Mel answered as I laid there trying to piece together what was going on and where I was. It was the tone in Mel's voice that cut through my fog and led me back to reality.

It was our wonderful nurse on the phone calling to update us. Ellie had had a rough afternoon. She was still agitated, and had not settled for a nap. More importantly though, she had been sick and had vomited a few times. It was the contents of the vomit that was the most alarming to us. Ellie had vomited what look to be old blood. The team had done an x-ray to check her belly for any irregularities and found none and her belly felt soft to the doctors touch. Nonetheless all feeding was suspended until they could be sure that it was not her new drug regiment that had caused the bleeding. Although the feeling was that the blood had been there for some time and it was the reintroduction of milk that had stirred it up.

A little panicked we hurried back to the hospital. Of course she looked perfectly fine, alternating between a playful happy mood and her overtired cry. We took turns trying to comfort her in order to help her fall asleep, with minimal success. We both knew exactly what we needed to do to get her to sleep but were prevented from doing any of our learned tricks by her spider web of remaining IVs.

In a pathetic attempt to explore all avenues for getting her some much needed sleep, I flagged down a doctor I recognized and insisted that he take a look at her. He thankfully obliged me. Of course as soon as he began his assessments of her, Ellie was content to just give him googly eyes and smile at him. He prescribed some Tylenol for her discomfort and suggested that we might be part of what was stimulating her. Again it was suggested that we should go and get some rest. He assured us that all her vital signs indicated she was doing great and that her inability to fall asleep was most likely related to her being weened off of the sedative she has been on since we arrived here.

We reluctantly did as we were told and headed home. We were both emotionally spent and talked little over the next hour as we tried to calm down and go to sleep ourselves. Fitfully I laid in bed praying that today was just a blip in the road to Ellie's recovery and tomorrow would begin a new streak of positive steps forward. I would be grateful if we could write our own version of the silly song.

Three steps forward, take a rest, then three more steps forward.

Saturday, February 23, 2013

Day 8: Edmonton

Friday, February 22nd

Today marks the one week anniversary of this horrific ordeal. Is Ellie doing better, yes. Do they know what caused any of this, no. We have to prepare ourselves for the idea that we may never know.  Yet we are taking solace in the fact that she is making good progress.
Morning rounds saw subtle changes to her drug regiment. They took her totally off of morphine and the goal for the day is to bottle feed her some food. We are going to start with a paltry 5 mL, which is a drastic change from her previous 120 mL per sitting.  We found yesterday that when I held her it did not alleviate her desire to eat, but with Dan she was content to just to sleep in his arms.  So this morning, that it is where she's been.  Who can blame her... Dan has that affect on most people.  Plus, when she starts eating I don't think I'm going to let her leave my arms... He may as well get his fix now.

Later her cardiologist came by and stated that they were going to ween her off of Milrinone and slowly introduce a new heart medication ORALLY.  This gets me excited because that means less tubes and with less tubes that means home to Winnipeg.  Of course this process is going to take a while and nothing is ever guaranteed, but it is cause for excitement.

Some of our cousins came to visit today.  It was surprisingly comforting to see them.  It alleviated a lot of additional stress that we didn't realize we were both carrying.  We are both still struggling with a lot of guilt when we are not beside her but we know we have to take moments away to recharge and keep ourselves sane.  
On returning from our visit Dan insisted on holding her right away and together they both promptly fell asleep again.  I'm beginning to think the only time Dan can relax is when Ellie is in his arms! They were quite a pair... both softly snoring in syncopation!  After an hour or so I "conveniently" poked and prodded Dan awake so I could finally have my turn.

Once in my arms it was time feed her, which lasted all of 5seconds. I really hope they increase the amount of food she can have in one sitting soon. I know that she is not physically starving, but she thinks she is, and that distress is hard to watch.
The weening/removal of her various drugs has made her movement very jerky and erratic, this is very common we were warned.  The doctor described these movement as "ballistic", which is very fitting as her hands have targeted her face like tactical ballistic missiles. For now while she is awake in either of

our arms our job is to minimize the damage she may inflict on herself. At least in some way we now have a sense of be able to protect her from something.

I'm finding the emotional journey of the last week incredibly draining.  Irrational thoughts sometimes plague my brain so I claim biblical truths that I have memorized throughout my life as comfort.  This, and the knowledge that there is a wonderful group of believers praying for her across North America, comforts me. That and the peace that only Christ can bring.

Day 7: Edmonton

Thursday, February 21

Every day is a struggle.  The waiting for a change either good or bad is what is killing me. No matter how we try, we are completely helpless to affect any change. So we wait, and wait, and wait anticipating the slightest change that we can latch on to and make some sense of what is happening to our little girl.

The days have started to blur together, without this blog I think we would be hard pressed to even tell you what day of the week it is. This new routine we have fallen into is completely foreign to anything we are used to, but we depend on it. I don't think either of us were aware of how much we relied on it until it was disrupted yesterday. I was a pretty dark place for most of yesterday as a result, so the goal for today was to try be as positive as possible.

Our routine was altered once again this morning, though this time it was of our own doing. Yay, finally some control over something. Mel left early to visit her parents who happened to have a three hour layover at the airport here on their way home to BC. This left me to spend the morning alone with Ellie.

When I arrived at the NICU I was met by our nurse from the past few days. She was very excited and looking for Mel. Ellie had a very good night and the doctors felt she was ready to have the ventilator removed. I told them that we had to wait till Mel returned from her visit to perform this monumentous (according to urban dictionary this is a real word) procedure.

With a few hours to wait before Mel returned I hunkered down with Ellie and tried not to think about the ramifications of what was to come later in the day. At home I read whatever I am reading to Ellie, so to pass the time I read to her from "The Great Gatsby". The passing doctors found this very entertaining and commented on how they all loved the book as they walked by. To me it felt like home.

When Mel arrived the team assembled to remove the ventilator, two nurses, one respiratory therapist, a few hovering residents, and the lead doctor is all it took. Everything went smoothly and within a few minutes Ellie was wide awake, alert, and just a little testy with all of us. It was wonderful to see her face without all of the tubes obscuring it. Though we were very happy to have the ventilator removed it was a little bitter sweet. She was very hungry and quite distressed as a result, but  we were told that food reintroduction will take a
few days to ensure her stomach can handle it. She is getting all the nutrients and fats she needs intravenously, so she is starting to gain weight again, only her belly feels empty to her.

Mel spent much of the afternoon holding Ellie and trying to comfort her. She was still very dazed from her drug regiment and the trauma of the past few days. After a few hours I was finally able to wrestle her away from Mel and get some daddy daughter time. Within a few minutes of her being transferred to my arms she passed out with her first nap of the afternoon. It was amazing just to hold her and feel her little body breathing the way it was designed to. It was so comforting holding her that I also fell asleep for a little while.

We left the hospital around 8pm, which is our goal every night, to ensure that we get some sleep, and after a day like today I am sure we will both be asleep before our heads hit the pillows.

Friday, February 22, 2013

Day 6 Edmonton

Wednesday, February 20th

Today was an odd day.

When we arrived at the NICU it was closed to all visitors.  Apparently when babies are too sick to be moved from the ward they actually perform the surgery there.  The area had been sterilized and the planned surgery was moments away from starting.  I hate to say it, but nothing... not even a surgery was going to keep me from seeing my daughter.  I think the nurse at the desk saw the desperation and determination in my face and let us in... If only to see her briefly and make sure she was doing ok.  We were a little shocked to find out that she had been totally taken off one of her heart medications during the night, we had been under the impression that this process could take a few days. Her vitals were strong and unchanged without the drug, this is a very positive step.  The doctors had also started lowering the levels of her ventilator in anticipation of removing it in the near future. They are now watching to see how her heart reacts to the greater workload.  I really wanted to talk to the doctor during her rounds but it was just not meant to be.

We spent the next few hours sitting and waiting in the family lounge at the hospital. Time seems to evaporate in the hospital and before we knew it two hours had gone by so we headed back.

It was a tough morning for Dan... the lack of progress and feeling of helplessness was really wearing him down. He found it very hard to sit still for any length of time so we did not stay very long.

When we headed back after a lunch break my plan was to get a thorough update from the first doctor or nurse I recognized.  I was even  prepared to be aggressive if necessary,  thankfully it didn't come to this.  Ellie's nurse was amazing (of course) and when I voiced my feelings (in a non-threatening or aggressive way) she made sure to tell me what she knew AND flagged down a doctor and had her talk to me.  We finally got the results from her head MRI... they came back normal.  Praise The Lord!  They were also pleased with how she was dealing with the lack of support from the breathing tube but they wanted to wait to see how her heart was going to react before it's totally removed.  Unfortunately she dislikes it immensely, almost as much as me.  I hate how she can't make any noise, the coughing is incredibly disturbing to witness.  A part of me just wants to rip it out BUT then I remember what happened when they put it in and I just suck my feelings up.

It was really nice to see my uncle Jock today and have him pray for us.  It was after this that Dan seemed more like himself... Or more like how he's been since this craziness began.  We were going to go out for dinner with him and his family tonight but plans changed when the nurse organized a massive undertaking for me... I got to hold Eliana!  It took no less than three people to move her with all of her tubes attached to her.  I was giddy like a kid.  Ellie stared into my eyes and I enjoyed talking and singing to her.  I think I motivated other moms in the ward to sing to their babies because I soon heard other songs wafting through the air.  If I was a self-conscious person I might have been intimidated by the amazing voice I heard in the next station.  Two and a half hours later I had to give her back and we retired for the night.

What started as one of the toughest days turned into the sweetest.  I know there's a lesson to be learned in that.

Thursday, February 21, 2013

Day 5: Edmonton

Tuesday, February 19th

Ellie had a really good night. She slept most of the time but her nurse informed us that she was much more alert when she did wake up.
There was a lot planned for the day and it sounded like we might not get to see her much during and in between all the scheduled tests. The most significant one scheduled for the day was an MRI . The plan was to do an MRI of her heart and her brain. The feeling was if she was there already why not do both at once. In order to get the best scan possible they planned to administer a mild anesthesia to ensure that she did not move around at all.

After the MRI we were moved to the NICU as there was much more space there than in the PICU. It is the same great care just a different location. The NICU actually feels like a much better fit for Ellie. In particular the beds are smaller so we have better access to her. Today was the first day during this ordeal that we have been able to hold on to one of her appendages for any prolonged period of time... Sure it was just her foot but we were incredibly thankful to have some intimate contact with her.

After the MRI we met our new team of nurses and doctors in the NICU. They are a very supportive and nurturing group. They did their evening rounds with members of the PICU team so that all the information was shared.
The team is starting to feel that Ellie's heart condition is less likely caused by a virus and are now leaning towards it being either genetic or metabolic. The MRI revealed that the chamber of her left ventricle was thinner than it should be. In a best case scenario her condition is physical in nature and can be managed with surgery and a drug regiment. But we are a long way away from any certainty.

The plan for the night was to begin weening her off dobutamine, the major drug she has been on to keep her heart beating at a healthier rate. This will give the doctors a better sense of how her heart is rebounding.

We left pretty late as we wanted to meet the new night nurse.   When home we ordered pizza from a halal pizza place... who knew you could get beef bacon!!!

Later that evening we received a word from a friend that brought our attention to Exodus 14:14.
"The Lord will fight for you, you only need to be still...".

This was going to be our verse of the day tomorrow.

Day 4: Edmonton

Monday, February 18th

Every morning we wake up and a feeling of anxiousness overwhelms us.  It's just an odd feeling, not having your baby with you... not quite natural.  We have started a morning routine that gets us out of our suite pretty early so we can spend the most amount of time with her.

When we arrived this morning we found Ellie still on the respirator.  In fact the lowered rates that they had begun last night had been reversed.  From the morning X-ray they found out that a lot of fluid had built up in her lungs over night due to her congestive heart failure.  Her heart was still incredibly fragile and they didn't want her to have to work too hard to breath yet.

Since the removal of the epinephrine, Ellie's heart rate had decreased to under 60 beats/min... which is crazy low.  After much debate amongst the professionals, they decided that they would give her a dose of a drug that is supposed to increase her heart rate drastically.  They then proceeded to hook her up to an ECG to record the results.  The good news is that her heart responded "normally".  One small success. 
After the new drugs were administered we met the "Heart Failure Specialist".  All I could think of was "worst title ever"... was he serious? It was around this time that I started to feel really small and incredibly overwhelmed.  I had to leave.  With my small knowledge of medical terms and functions, I was understanding a little too much of the doctor "speak" around us.  The full weight of the situation fell swiftly on my head and I just had to escape.  I forced Dan to go for walk/lunch to try and process everything, which seems to be a never ending task.

While we were gone, the cardiac physicians conducted another ECHO which lasted a good hour. 

In the afternoon our wonderful nurse put in a feeding tube that goes in through the nose and down into her intestine.  This way there is no risk of vomiting and yet she gets all of the benefits of the nutrients.  Her food is at a rate of 2 mL/hr, not a lot but at least it's a start.  We were also informed that she was taken off of the ECMO alert.  What a relief! I'm hoping with this news that the constant fear of her dying decreases.

At this point she is on two  powerful heart medications.  All of her vitals seem to be stable for now.  After this roller coaster of a day we were exhausted and ready for bed.

Wednesday, February 20, 2013

Day 3: Edmonton

Sunday February 17, 2013

After a super short sleep we made our way back to the PICU to check on our baby girl.  Thankfully she remained stable since we left her at 4am.  We arrived as the cardiac, infectious disease and intensivist doctors were doing their rounds. This was good timing for we were able to answer a couple of background questions that they had.  At this point every nugget of information felt like it held the missing key to Ellie's health.

Her attending (the doctor in charge and responsible for Ellie) came by a little later and shared the plan of the day.  The goal for the day was to ween her off epinephrine and possibly take her off of the ventilator.

We spent a large portion of the day sitting and staring at her... Trying not to fixate on her vital sign monitors.

We were able to get away for lunch with our awesome cousins Jon and Sara McKay.  It allowed us to  escape our reality and enjoy some fellowship with family for a few minutes.  It also gave us the opportunity to hand off our dirty laundry!  I had to pack a lot of dirty clothes (I hadn't done laundry in a while) and Dan's stuff from Jamaica was pretty ripe!  Lucky for us Sara has a servant heart and didn't even think twice about it!

While we were away our day nurse Melissa started Ellie on the "Treasure Life" program.  It's a bead program for cardiac kids that keeps track of a child's procedures while they are in the hospital.  We've decided that we are going to participate in the program.  We are not going to include every single test, IV line or blood work... If we did that her journey cord would be a few feet long.  Instead we've stuck to the major procedures.  It at least gives us something to do.  Seeing the collections of our neighbours, it's the first time that my competitive nature is working in reverse.  I'd like her to have the shortest cord!

The afternoon was roughly the same as the morning... Waiting, looking at her stats and tearing up.

We moved into our new accommodations conveniently located across the street.  This forces us to get out of the building and take a break from the intensity of the situation.  Our suite consists of a full kitchen, eating area, living room and separate bedroom and bath.  It's like our own one bedroom condo.  This wouldn't have been possible without the amazing cardiac program in Winnipeg.   Children's Variety has been amazing by dealing with the logistics of everything.  (If some of you out there don't donate your money to charity, you should consider this wonderful program.)

After getting settled and consuming some dinner, we headed back to her unit.  Awaiting us were results from her earlier ultrasounds of her head and other major organs.  The doctors were looking for swelling in the organs and any possible brain bleeds.  Apparently brain bleeds are common after CPR so they performed one as a precaution.  Fortunately for us the results were good.  There was no swelling or bleeding found.  Also, the epinephrine weening process was going well, by morning she should be completely off of it.  They were also going to lower her rates on the respirator and possibly remove it tomorrow.  Could it be possible that we would be able to hear her cry, laugh and babble at us?

After a long day we headed back to the hotel and passed out.  I guess our sleep deficit was still incredibly large!

Tuesday, February 19, 2013

Day 2: Edmonton

Saturday February 16, 2013

I don't think you truly appreciate our health care system until you are dependant on it  in a crisis situation.  The amount of care and support that we have received from the different doctors, nurses, and  Children's Variety is quite incredible.  They took care of everything, my flight to Edmonton, our accommodations, and a living allowance for food and incidentals.  All I was left to do was focus on Ellie... Or should I say obsess about her.

My flight arrived in Edmonton around 6 pm. Everything felt very surreal and  incredibly overwhelming. I was so nervous to know how Ellie's flight had gone that I was having trouble simply leaving the airport.  I was hiding in a bathroom stall trying to summon up enough courage to take a taxi to the hospital when Dan called from Toronto.  Apparently there was a snowstorm in Toronto and flights were running at least a few hours late. I just wanted him to get here already! 

I finally arrived at the hospital and began to wander around in an attempt  to find the PICU.  I was surprised by how dead the hospital was... The place was abandoned,  I couldn't find anyone anywhere to ask for help! Finally after 15 minutes of aimlessly walking around I came across someone who was able to give directions.  The first thing I saw when I walked through the door of the PICU was her flight team.  They had smiles on their faces and told me that she had a great flight with no incidences.  Hallelujah!  I didn't get to see her right away though... The team still had to put in a femoral line and I decided that I didn't need to see a procedure like that right now so instead I went to our "over night" room in the hospital and had myself a good cry.

Eventually I made it back and watched them run a battery of tests including an echo-cardiogram. The echo test lasted about an hour as they examined every millimetre of her heart.  After the various tests, I gave her medical history to the team of doctors who had assembled to evaluate her situation. It was impressive to see so many specialists in one place with their complete focus on Ellie. I felt reassured that we were in the right place.

After a few hours of assessment from the doctors and getting her comfortable, I finally felt like she was stable enough to go have a nap until Dan arrived.  It was 9 pm and I had hardly slept over the past 48 hours. I was completely exhausted, so exhausted in fact that I slept through a fire alarm!

Day 1: Jamaica

Friday February 15, 2013

I have seen the scenario unfold on virtually every TV drama ever broadcasted, yet I never imagined that it actually occurred in real life. Surely the 2 am panicked phone call containing a family emergency was nothing more than a fictional plot twist to keep the audience engaged in a show. To my horror this fictional plot twist was now my reality.

I was on a missions trip in Jamaica with a team of Mel's students when the call came. Brian, our Jamaican contact, came into my room and roused me from a deep sleep. I could not see his face in the dark and even without my glasses on I knew something serious was wrong from his minimal attempt to be quiet. He handed me his phone and said I needed to call home immediately. Ray, my pastor, had just called and there was something wrong with Eliana.

The shock of these words made me sick. This had to be a dream, or maybe something I ate. I made the call in a daze and Mel answered after three rings, which felt like an eternity. My heart sank with the onset of her voice, this was serious!

Mel replayed the sequence of events that had played out over the preceding hours but all I heard was, my baby is girl is sick. I felt so far away, and so much guilt for the distance between us. Never before in my life have I ever wished for a super power, but in that moment I wished like nothing else that I could leap out of my own skin and fly to them both. After a moment the more logical part in my brain thankfully kicked in. I cut Mel off mid sentence, I told her I would call her back and that I would be there soon.

I woke Cam, Mel's colleague and our close friend, who was sleeping in the next room to relay the story. He and Brian took to the computer to plot a course home for me while I packed up my gear. Thirty minutes after my initial call to Mel the three of us were on the road to Montego Bay, the closest airport. I did not have a ticket home yet as our Internet connection was very limited. We did find a flight out of Montego Bay to Miami that left at 8am but had no idea of availability and what connections to Winnipeg there would be.  

We arrived at the airport around 5:30 am to find that none of the ticket agents were there. Thankfully Brian had an apartment nearby where we anticipated a better Internet connection. The connection was strong at Brian's apartment and we were able to try hundreds of different flight combinations. After an hour of Cam and Brian working on my flight we succumbed to the fact that my best option would get me back to Winnipeg around 7:45 pm. Fourteen hours from now! We booked the tickets and I called Mel to share the news and get an update.

In the time since we last spoke things had gotten significantly worse. The plan now was to try and transport her to Edmonton where the cardio centre for western Canada was located. I was trying so hard to be strong for Mel over the phone but I know my voice betrayed me. I had to get off the phone with her before I broke down completely. I was filled with anger, praying and crying I questioned God and the course of events like I never have before. I was making myself physically nauseous, convulsing, and fighting the urge to smash everything around me.

When I pulled myself together I left the room I was hiding out in to join Cam and Brian. Our new mission was to look at flight options from Winnipeg to Edmonton in anticipation of Ellie's move. There were none. At least there were none that departed after my 7:45 pm arrival. I was not going to wait any longer than I had to to see my family. I started doing the math, could I drive to Edmonton before the red eye flight, who would come with me on the drive, surely it would not be safe to go alone. While all of this was playing out in my head Cam was able to plot out a course from Montego Bay to Edmonton which would get me there around 11:45 pm. Thankfully this new flight was on Westjet again, the company I had booked my flight to Winnipeg on. Our hope was that once we had confirmation that Ellie was indeed being transported to Edmonton we would go to the Westjet ticket agent and try and get me on to this new flight.

At 10 am Jamaican time I had confirmation from Mel that the transfer was happening and they should be there by mid afternoon. With this news the three of us headed back to the airport to try and switch my flight from Winnipeg to Edmonton. At this point I did not care if I had to pay for six different flights home as long as I got there. Thankfully it did not come to this. The ticket agent was very sympathetic and made all the arrangements for me. I would be in Edmonton tonight baring any further disasters. All there was to do now was wait.

The next few hours of waiting sucked to put it mildly. I called Mel one more time before I went through security and lost access to Brian's cell phone. Her voice was noticeably worse, was Ellie gone? Had I missed her? My head was getting light, I wished Mel would just spit the words out so I could begin to process this new horror. Ellie's heart had stopped beating while the transport team was inserting her breathing tube. They had to perform CPR for five minutes before she was stable and her heart has beating again, albeit with multiple chemical and mechanical aids. 

Armed with this news I board my first flight, to Toronto. I was filled with the anxiety that my little girl could die before I got there. The flight was uneventful until we neared Toronto. A snow storm had settled in and was dumping layers of snow on the city. We circled the airport for thirty minutes waiting for a runway to be cleared for our arrival. When we finally did land, the freezing snow had jammed up the departure walkway which prevented us from leaving the plane. My connection window was shrinking, the flight to Edmonton departed at 9 pm and it was now nearly 8 pm and I still had to go through customs and recheck my bag. Eventually the doors opened and I began my sprint to customs. Thankfully everything was fast and I made it to my next terminal on time for boarding. That is if boarding had been on time. When you are in the throes of a crisis you get tunnel vision, had my plane not just been delayed, what made this plane so special that it is perfectly on time? Of course my connection was also delayed.

When we finally were able to board we were 45 minutes late. We then sat there waiting to be de-iced and for a runway to be cleared for another two hours. I arrived in Edmonton at 2 am. Our cousins Jon and Sara thankfully were there to pick me up and take me to the hospital.

Ellie had survived the transport and was stable. 

I could hardly see her through all the tubing and machines, but she was alive and in one of the best infant cardiac facilities in North America. 

Where do we go from here?