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.