Saturday, February 26, 2011

Before Hospital World - Part II

When I left off.  Nicole had just been born and the legal wheels were in motion to begin the adoption process.  This was hardly the end of the story.  There are several legal hoops to jump through before the adoption happens.  In addition, there are several emotional hurdles to overcome as well.

Nicole's adoption was what is known as an "open" adoption.  "Open" meaning that the birth mom and adoptive parents all know each other and can have the ability to maitain contact.  The choice of where the adoptive child goes and how the adoptive family is chosen is a matching process performed by the Provincial Adoption Registrar who creates a "short list" of perspective families.  These profiles are then given to the birth parent/s and they select based on their own personal criteria.  We as perspective adoptive parents have no part in the process other than providing input for the profile such as pictures and an introductory letter.    This also makes these adoptions very unique and personal.  What we experienced could be very different from someone else's adoption story.

After Nicole was born; this "lack of control" could not have been more evident.  We were on cloud nine but we could not see her yet.  To be respectful and with the social workers advice we wanted to wait until the birth mom invited us to see the new baby girl, who at this point did not have a name.  Perhaps the birth mom did not want to see us, she could have second thoughts, there were many possibilities as to how this would play out.  I think this is where the social workers did such a great job.  They kept talking to birth-mom and kept us informed about what was going on.  They kept everyone on an even keel during a very emotional time.  The first news we received was the basic height and weight information and that the baby was perfectly healthy.  Mom, however, had some post delivery complications which put everyone on edge.  From our understanding the complications were not minor in nature.  This just added to the stress.  So the night our daughter was born we went ...shopping; not because we needed to but because we were going stir crazy sitting at home and "waiting."

Thursday slipped away and then it was Friday.  Still; no news.  Sometime on Friday we were called by our social worker to let us know we had been summonned to the hospital.  We agreed to meet on Saturday morning.  We were going to see birth-mom first and then the "BIG" introduction.  We were also informed that birth mom would be meeting with her lawyer on Saturday afternoon for her to declare her intent to adopt.  This is a critical part of the legal process.  This would allow us to take our newborn daughter home from the hospital.  So...Saturday was the BIG day.

With great anticipation and mustering every bit of parental confidence we could we headed to the hospital on Saturday morning.  We met birth mom and exchanged some small talk.  Keep in mind that we had only met her once before and only for about 45 minutes.  We were basically strangers.  Our birth-mom is an extremely easy going person and although I wouldn't describe her as chatty but nonetheless easy to talk too.  Then the big moment.  Our little girl was wheeled in from the nursery.  You would think that moment would be vivid in our memories as "the moment" but it is not.  I think we were so concerned about etiquette and trying to be respectful I think we lost ourselves for a bit.  Our girl was truly perfect.  The day before we had found out that our girl did have a name and that it was Ashley.  This was chosen by her birth mom for the registration of live birth.  Our initial reaction was that we liked the name and intended on keeping it.  We did have the choice of choosing our own name, but we were ok with Ashley.  Baby names were not high on the priority list at this point in time.  Our visit on Saturday morning went well.  After a few hours, and knowing that the lawyer was coming in the afternoon we made arrangement to come back in the evening.

When we came back, that night, we found that the lawyer had come and gone and that the papers that needed to be signed; were signed.  We were very pleased to hear that the lawyer spent some time with our birth-mom and they even went on a walk together.  It sounded like they made a good connection and things were going very well. 

That night we visited some more and gave baby Ashley her first bath.  We found out that the plan was for birth mom and baby to be discharged the next morning, Sunday.  We would be taking "our" baby to "our" home the next day.  Needless to say we were a little anxious and a whole lot excited.  Could it really be this easy? 

When we went home that night and made final preparation for the next day's homecoming.  We had a bit of a "moment" as we were trying to get used to the idea of having baby Ashley around.  I remember talking to Susan and referring to "Ashley" and Susan said "who?"  It was probably at that point that we figured that we needed our own name for her.  We liked "Ashley" but it just didn't have that "fit like a glove" feeling to it.  It was that night, quite by accident, that the name "Nicole" came up.  OK...it's corny...but the name Nicole actually came about while we were watching a movie...the Interpreter...with Nicole Kidman.  Yes...our daughter is named after an Australian actress.

Sunday morning came and we buckled the baby seat into the car and headed to St Boniface hospital to fill it.  We were kept fairly busy, at the hospital, doing administrative stuff and getting last minute instructions.  Our social workers where their to help with the transition.  The only request our birth-mom made the whole time we were in the hospital was that she wanted to spend time alone with baby Ashley, say goodbye, and then she would leave.  I remember it very well.  Our birth-mom walked out of the hospital room with a back pack over her should and left...without a baby.  Ashley was now ours.  This was "our" moment.  This was when this all became real to us.  This was our birth story, at this moment.  We spent a bit of time gathering up some items and said goodbye to our social workers and strapped our little girl into her car seat.  I remember what our social worker said when we left..."have a good life."  That really sticks out in my mind as although it was a very trivial statement it meant a whole lot more.  Although we still had some legal process to go through...we were done.  Our baby was coming home.  At noon on Sunday, with church bells ringing, we walked out of St Boniface hospital with our daughter, Nicole.  We took pictures outside the hospital, a ritual we repeated two years later.

Our 21 day waiting period came and went.  At any point in the first 21 days, the birth-mom can change her mind.  This is probably every adoptive parents most feared time but with us it came and went with no issue.  In August of 2006, the final adoption was legal.  A new registration of live birth was filed with the name of Nicole Ashley Anne Lepp being born to Donald and Susan Lepp on April 27th, 2006.  That single piece of paper hardly tells the whole story.

Saturday, February 19, 2011

Before Hospital World

In the past 2 1/2 years our lives has been dominated by "hospital world."  It's hard to remember what our life was like before Russell came on the scene.  When Susan found out that she was pregnant with Russell, we were still new parents as Nicole was only a year and a half old.  Many things had already changed in our lives with the arrival of our little girl.

Many people think that Russell is a miracle baby but in reality he is our second miracle, Nicole was definitely the first.  The chances of us having kids was very unlikely and we had opted to look at adoption as a possible option.  In February of 2006, my Dad was dying of cancer and Susan's Mom was waging her own battle with cancer.  We discussed with our social worker at that time, the possiblity of coming off of the adoption list temporarily to let our lives settle down a bit.  We talked about it and decided not to de-list.  If an opportunity came up we would seize that opportunity.  Besides, we had no real control over the situation, the opportunity to adopt could happen in a week, a year, or never.  We are so happy we made that decision as Nicole was already on the way.  I remember so vividly the day we got "the call."  It was the Tuesday following Easter.  I got the call from our social worker that there was a potential baby available and were we interested??  It seems a little bizarre when we think back...that someone was phoning us to offer us a human being. 

When we got the call...we know this was far from being a "done deal." In fact we thought chances were that this wouldn't happen at all.  After all it was the birth mom's choice as to where her baby would go and we knew she was looking at a couple of other potential families.  Having never been through this before, it seemed a little unbelievable and that it may never happen.  I don't remember the exact order of events but that evening when Susan and I both had a chance to absorb the situation and read the adoption profile we had a follow-up discussion with our social worker and asked her a few more details.  We found out that the baby was due in about a week and that the birth-mom wanted to meet us.  A meeting was setup for that Friday.  I think we were remarkably calm during this time...as I think we really didn't understand the gravity of the situation...it was just too unreal. 

Friday morning came (the day of the meeting).  On the way to the appointment, I commented to Susan that we are going to meet, have a nice chat, and in all likelihood this wouldn't happen.  The birth-mom will likely choose someone else...but this was a good experience to go through, so we would be better mentally prepared for the future.  I laugh when I think about how unprepared we were for that meeting.  We really didn't have a clue.  One of the reasons I love our Social Workers from CFS is that they would never put a family through this process unless they were pretty sure it was going to work.  They look carefully at the birth-mom and the family and put all of their eggs in one basket.  They want this to work.  We didn't realize it at the time but they were pretty much sure this was going to happen before we met.  Again, there are no guarantees, but they definitely had a game plan.  After a 45 minute, somewhat awkward visit.  We found ourselves making appointments with lawyers and making arrangements for temporary guardianship in the event the baby were born over the weekend.  Papers had to be filed that day if we wanted to take the baby home, as this was a Friday.  Susan and I were absolutely stunned!!  We had to take our social worker aside and we very sheepishly ask "is this happenning"??????  She must have been laughing on the inside, but she very calmly said..."Yes...it is!"

We were dazed!  In a few minutes we were driving on our way to our lawyer's office to begin the legal process of adopting our, yet to be born, baby. 

We made a few phone calls to family to let them know what was happenning and then we began thinking about all of the things we needed.  We didn't have a clue.  The first thing that was mentioned to us was that we needed a car seat to take our new baby home.  There is a baby store a block from where Susan works so we thought...hey why don't we take care of this right now.  We wandered into the store, and began looking around.  We didn't have a clue what we were doing or what we were looking for.  After some time a store clerk offered some assistance.  We must have seemed like total morons as we didn't know what to ask and had no idea of what we were looking for.  I remember the clerk asking..."So when is the baby due?" and we said "next week" to which the clerk responded with a bit of a puzzled look as she glanced at Susan's not pregnant belly.  We were so overwhelmed by all of what had happenned that morning we were in no frame of mind to be buying a car seat, so we graciously thanked the clerk for their help and exited the store.  The car seat purchase would happen another day.

The weekend passed with no news.  We exchanged a few e-mails with our lawyer and our social worker as we had several questions about the process.  We had several hurdles to overcome before this adoption would happen.  Yes, we had a verbal committment, but we still had legal hurdles and the dreaded 21 day waiting period.  By the time Monday rolled around, we were already well into the process of getting..."baby supplies."  We went back to work and attempted to put all of this out of our minds as we "waited."  Monday, Tuesday,  then Wednesday.  No word and no news.  The pandemonium of the previous Friday had now transformed into boredom.  When is this baby going to be born, would it be healthy, would it be a boy or a girl?  Imagine all of the questions, fear, joy etc of 9 months of pregnancy packed into a week. 

On Thursday afternoon,  while picking up some drawings for work, I stopped for gas.  While I was filling up...my cell phone rang.  It was our social worker, and the news we were waiting for was finally here.  "You have a perfectly healthy little girl."  Wow!  Never in a million years did I imagine that I would find out I was a father at a Coop gas station and that I would have to phone the baby's new mother to let her know.  I quickly detoured on my way back to work and stopped by to see Susan.  Susan met me outside...we got in my truck and had a "moment."  We cried (I NEVER cry) and I don't remember who said it but I know we were both thinking it..."What did we just get ourselves into?"   

Wednesday, February 16, 2011

Opportunities

After last weeks detour into "Hospital World" we have had Sunday to rest.  We attended the church of the "Sleepy Pillow."  Then Monday came and it was back at it...back to work for both Susan and I.  I did take Russell for blood work Monday morning so I was a little late for week.  My goal for the week was only one trip to the hospital this week.  Looks like we might actually achieve that goal.  Susan works part-time so she worked Mon & Tues and has the rest of the week off.  Next week we get back to the insanity, when Russell has an appointment on Tuesday for a 24 hr Holter monitor and blood work again.  I am leaving for Ottawa on the 23rd for the balance of the week.   So we are still in "busy" mode.

On Feb 28th I have my first meeting with the College of Registered Nurses of Manitoba.  I am really looking forward to this.  I have been appointed to the Education Committee as a public representative.  I am sure I will learn lots and it is an opportunity to give back to the profession that has given us so much.  I am really enjoying the opportunities that some of our experiences with Russell has granted us.  I strongly believe that both Susan and I have been given opportunities to share our experiences and to attempt to make a positive impact on the medical system or help amilies who may be going through similar situation as us. 

When I have spoken about our experiences with the medical system i have tried to be positive.  We have encountered some of the most amazing people, who are extremely skilled at what they do.  What I have not emphasized is some of the negative experiences and frustrations we have dealt with.  Part of the reason we have gotten involved; is that we have chosen to help try to solve some of the problems...and there are many.  We have been reminded in this past month during our two hospital stays just how much things need to improve.  I am very proud of some of the progress we have made in making some in-roads into the medical system and I have been very surprised how much support we have from medical practitioners.  I am hoping to share a few things in the next couple of months about some of the projects I have been working on and hope they materialize.  For now...there is still a lot of work that needs to be done.

Sunday, February 13, 2011

It's not all about me!

In light of all of the events of the last week and the last two years you would think it would be easy to be self-absorbed in what is going on in your own life and I think most people would understand.  The one thing I have to say is that we have been constantly reminded that there are lots of people out there who have it tougher than we do and in spite of all of the negativity there are lots of good things happenning as well. 

Just a few minutes ago I found out that my cousin had passed after a lengthy battle with cancer and also another family friend had passed this week also having battling an amazing battle with cancer.  Yes...we aren't the only ones who have challenges in our life.  Both of these people were very supportive of our family while we were in Edmonton with many words of encouragement.

Probably about the 100th time i've been reminded to be thankful. 

A Busy Week!

It has been an eventful week.  Monday started with Russell's Heart Cath which went amazingly well.  I have to stop and think about that for a bit, to remind myself how big a deal the Cath is.  They send a catheter into Russell's neck and then basically go exploring in Russell's heart.  They measure pressure, and take a biopsy to check for rejection,  and do a whole bunch of things to stress the heart to see how it is performing.  Although, it is a day procedure it is not minor in any other way.  Everything went well during the Cath.  While Russell is "out" they take blood to do tests...it is just easier.  As a result, we were told that his Potassium levels were high.  We have been through this before.  A med was prescribed to take the Potassium level down...been there...done that.  No big deal.  Well...nothing in our life is ever simple.  The med is this brown slop that we have to give insane amounts to Russell.  40 ml...every 6 hours.  Keep in mind...that no other med we give Russell is more than 1 ml.  Russell is awesome at taking his meds...but when you have to give him this volume he digs in his heels and says "no way."  Never mind the fact that getting the med from the pharmacy was a bit of an adventure in and of itself.  I went to a pharmacy, close to work, but got a powder that we had to mix with water.  This didn't seem right to me as we had been given a liquid before.  I did some checking and the powder was correct.  The problem with the powder is that it doesn't mix with water at all...it separates in about 3 seconds.  It is the equivalent of trying to drink a glass of water with sand in it.  Try constantly trying to shake a syringe while trying to pin your son down...holding his arms...and trying to pry his mouth open.  On one session I got head-butted twice.  As we had used this med before...i called our "dealer"  (our regular pharmacist).  To ask about what we did last time...he told me that we used a liquid, which he had in stock.  So off I went to the pharmacy...to get a new batch of this nasty brown liquid.  Although using the liquid was better (no mixing...no separating of the liquid) it was still just as much of a wrestling match to get Russell to take it.  Giving the med was so awful that we decieded to skip some doses for our own sanity.

Thursday morning...I grit my teeth and said..."your getting your meds this morning."  After a 20 minute session the med was in.  Off to work....
At about 11:00, Thursday morning...I got a call from our babysitter.  She told me that Russell was just not himself.  He was drinking but not eating and had no energy.  She had changed about 4 diapers with diarrhea.  Normally, I would have just thought he was sick...but in conjunction with the high potassium I thought we should get him in to the lab for bloodwork.  We were scheduled for the next day anyway...so i thought we would just go in a day early.  The blood tests would show if there was anything to be concerned about.  So I left work, and picked up Russell.  I have to agree with our babysitter...he wasn't himself.  He flopped into the car seat when I put him in the car.  He started to nod off to sleep right away, which concerned me a little.  High potassium levels can cause arrythmia...and he wasn't acting "tired" sleepy...he was acting "things aren't good" sleepy.  I have to confess I left my hand on his leg as i drove and jerked it from time to time to make sure he was ok.  Some not very pleasant memories were coming back to me.  He was OK when we got to the hospital.  We were just waiting for the elevator at the Sherbrooke St Parkade when he launched everything he had eaten that morning all over the two of us and all over the floor.  This wasn't a trip to the clinic lab anymore it was a trip to Children's Emerg. 

I went to the clinic as they were waiting for us.  Catherine (one of our techs) was there and she helped clean Russell up a bit.  We collected ourselves for a moment and then headed off to emergency.  The emerg was a gong show.  I walked in and the waiting room was packed.  There were probably about 60 people in the waiting room (Place appropriate four letter adjective here quickly followed by a prayer for forgiveness and patience.)  The advantage of being "special" is that we don't wait in waiting rooms...especially ER waiting rooms.  I gave Lea from Variety (our Heart Clnic) a quick call to let her know we were there and to call for backup in case anyone hassled us about getting into a treatment room ahead of the 60 others waiting to get in.  Lea made the quick jaunt from across the street and looked at Russell and immediately said how "dry" he looked.  It was obvious he was really dehydrated.  Without any real issues we were quickly escorted to Room 10 in the Emergency Room.

I can be very critical of some of the medical people we encounter who don't know a lot about Russell's medical history...but I need to learn to be more patient.  Everyone tries very hard and they do try to their best for Russell.  The problem is Russell is very complex and therefore the Doctors and nurses become VERY careful.  Everything slows down and starts moving at a "snails" pace.  I assumed that they would start an IV, to re-hydrate the boy, and as soon as that IV went in I knew we weren't going anywhere soon.  After a few hours of fluid through the IV he already started to perk up.  At about 6:00 that evening...we started feeding him Cheerios and Juice.  Russell was already starting to entertain the nurses and be a regular "ham".  This is when I get the most frustrated.  You have a kid who is feeling fine and is acting like his old self but no one is going to let you go anywhere.  From here it becomes a negotiation to have us leave the hospital.  We received the news that they wanted to admit him to monitor his potassium level and make sure he didn't have the flu.  Fantastic...we weren't leaving anytime soon.  This is when frustration turns to anger.  There is nothing that they will do in the hospital that we can't do at home.  Pull the IV and let's go already.  He is drinking and eating... what more do you want.  The only thing that changed in the past 48 hours was that we had introduced this nasty brown slop med...which obviously has given him diarrhoea...which has caused him to be dehydrated.  Let's stop the med and leave the poor kid alone.  Ahhh yes...but we must be careful.  So this is how it went for the next 24 hours until we negotiated a day pass to go home on Friday evening.  We returned Saturday morning for bloodwork and waited for the results before we finally were formally discharged. 

So that was our week...how was yours?

Wednesday, February 9, 2011

The Latest

Just a few updates.  Monday was Russell's Annual Heart Cath.  Not exactly something we look forward to but a necessary evil.  Now that he is older, we don't really know what to expect from him when we go to the hospital.  He is not shy about sharing his opinion...and he absolutely refuses to be touched.  I guess he is a little too experienced being jabbed by pointy objects.  I must admit...he did fantastic.  Yes...it was a challenge to let anyone try to assess him or do vitals, but when he was left alone he was a very content little boy.  He never ceases to amaze.  While we were doing the hospital thing, Nicole went for an overnight visit at Grandma's; i think she had a great time.

Our schedule over the next month is kind of nuts.  Susan counted 12 medical visits between Feb 1 and Mar 15th.  This is not including trips for blood tests that are looking like they will be weekly for the next while.  Russell's trip to the hospital has messed up a few vitals so we are back to the weekly trips for blood work.  In this time, we are also trying to schedule in a few other activities including a trip to Ottawa for me and a few other odds and ends.  I mentioned March 15th because that is the date of Russell's eye surgery...oh did i forget to mention the eye surgery.  Ah yes...welcome to our insanity.

Saturday, February 5, 2011

My First Post

For those who know me...you know this is not my first blog.  My first blog was a year and a half commentary of my families experience with congenital heart disease that has effected both my wife, Susan, and son, Russell.  I imagine that future posts will be dominated with news of how they are managing with their conditions as we battle health care issues on almost a daily basis. 

The purpose of this blog is purely selfish.  I just thought i'd be honest.  This is purely therapuetic for me.  If my comments or thoughts were to help other people who may be going through similar situations, that is fantastic. 

For those who have no idea who i am or where I come from.  Hang on its gonna be a bumpy ride.  Well...hopefully not too bumpy.