Friday, 29 July 2011

Axton's Story 6 - Where Things Are at Now

So here it is, for all of those who have been patiently waiting - Part 6 of Axton's Story. 
Around 3-1/2 months, as anticipated, we began to notice that Axton's left arm/hand were delayed.  To our surprise we found that his right side was delayed too.  His entire top half was quite weak and his hands/arms barely changed position, they were stiff and his little hands would often be found in the fist position.  They would just hang down by his sides very awkwardly.  He had absolutely no interest in reaching for toys.  He would watch toys intensly...we could tell he wanted to be able to play with them, but he just couldn't get his arms working.  Reg and I always joked that he was working on perfecting telekinesis.

Although none of these things really came as a surprise, deep down I guess I had been hoping Axton would just develop "normally" and that perhaps there would be no after effects of the stroke.  Even though I knew of these issues I guess I was kind of in denial - I kept telling myself that once he started physio, he'd just "catch up" to his peers. His prognosis was confirmed when we had a home visit from a social worker from the Niagara Peninsula Children's Center.  This is when I was really forced to accept reality - Axton did have some issues that would not get better, only worse without therapy.  As well, therapy would not be a "quick fix", but would  become a part of our daily lives for months, likely even years.  Since then we've been going to NPCC once a week as well as doing the excercises they teach us at home the rest of the week.

Our work with the NPCC began about 6 weeks ago and Axton has made wonderful progress! Axton is just starting to enjoy "playing". (funny that we had to teach him to play)  His hands and arms are working much better, but he still struggles a lot with his hand-eye coordination.  He's also been working hard at rolling...he's mastered back to front, but we're still waiting to see front to back.  He has even met a few of the goals that our physio therapist had set out for him to complete by January.  He's a different child from the one who started this therapy 6 weeks ago, but we've still got a long road ahead.  He will meet all of his his own time.  This is something I really struggle with!  I have a hard time not comparing Axton to other babies.  I need to remember that Axton is an individual and that he is making some AMAZING progress.  "Normal" or "average" are words that should NEVER be used on kids - each child is a unique individual! 
One thing I am thankful for is the ability to see and appreciate all of the little steps in between the big milestones which normally get overlooked.  I would never have had this appreciation if we weren't going on this journey.  With Holden it was just like, "oh look, he's playing with a toy."  With Axton we get excited when he reaches for the toy, and then we get excited again when he touches the toy, and again when he grabs it, and again when he holds onto it for a few seconds and we get even more excited if that toy reaches his mouth.   These things are so minor, but for Axton, these are the big milstones  - things we certainly took for granted with Holden! 

It also blows my mind that physio and occupational therapists can work with children so young.  Early Intervention is amazing, and is key to the progress in babies who have strokes.   Each week during physio Axton is absolutely pushed to his limit.  He's allowed to start by playing, so the PT can watch his progress but the end of the session is spent stretching and challenging his little body so that he can gain the strength and endurance in his upper body that he needs.  By the time his hour is up the poor kid is screaming!  Despite this, each week he surprises us with new accomplishments - it seems funny, but I am so proud of my 6 month old for working so hard! 

   Axton has been one of the biggest blessings we could have ever asked for and we look forward to what God has planned for him :)  Although this situation wasn't in our plans, it certainly was in God's - we'll just keep trusting him as He know best and we'll see where He takes us next!!

Monday, 25 July 2011

Axton's Story 5 - Much More Than Coincidence

Before I move on to where things are at now there were some pretty incredible coincidences that took place throughout this time.  Reg and I are confident that these were not actually coincidences, but signs of God's hand within the situation, taking care of us and our little man.  We never doubted once that God wasn't in control and here are just a few reasons why -

1.  The fact that I made it to the hospital in itself is a miracle!  Had my water broken while we were driving in the storm Axton would have been born in our car during a blizzard!!  I would have been that person you see on the news!  Reg was led completely to get me in the car and get me to the hospital ASAP even though my labour was almost non-existent.  I honestly don't like to think about what would have happened had we left home just a few minutes later...

2.  The fact that I didn't get discharged on the 3rd as the doctor originally said I would.

3. The fact that I noticed Axton's seizures.  Seizures in a baby are very hard to spot because newborns make all sorts of spontaneous movement.  I had several people tell me how amazing that was, as it's even difficult for nurses and doctors to see.  We could have easily gone home without realizing this "twitch" was a problem.  Mother's instinct is a VERY real thing :)

4.  The NICU team came in so quickly and took Axton away - it probably took less than 2 minutes for this to go down.  The original nurse who took Axton from me as well as the nurse who was caring for me that day both came back to talk to me before I left the hospital.  One had worked for 10 years in the ward the other for 14.  Neither had seen a transfer from the ward to NICU so quickly.  They couldn't beleive it!

5.  One morning we came to find Axton was getting a head ultrasound.  The tech. doing the test was the same person I had had two weeks previously for a routine ultrasound during my pregnancy.  He (yes he!) & I had really hit it off.  He was a woodworker, and I sell woodworking products so we had lots to talk about.  He was a great ultasound tech and I was so happy to walk in that morning and see him working with Axton.

6.  The most important test Axton would undergo was an MRI.  This would confirm the suspisions of the doctors that he did indeed have a stroke.  We were in the NICU when the neonatologist booked the MRI.  He went away to book the test & came back ecstatic.  Axton's MRI would happen sometime that same day.  He said to us "Do you realize how incredible this is?  MRI's can take up to a week to get booked!  Never have I seen an MRI get booked so quickly!"  Reg & I were extrememly happy as we knew getting this test done was one step closer to getting Axton home.  Talking with the nurse a little while later she asked us "Did Dr. M say when the MRI was going to be?"  We told her later that day and she said, "No that's impossible, let me go find out..."   The nurse came back just as flabergasted as the doctor.  Axton did indeed get his MRI that day!

7. Way back when we were in youth group at our church, approx. 14 years ago, our youth leaders Mike and Melri had a baby boy, Matthew who also had a stroke around the time of birth.  Mike & Mel were also the leaders of a team I was on right after high school which travelled around to different churches working with youth groups.  When Melri heard (via Facebook) of Axton's stroke she hightailed it to Mac to see us.  Strokes are rare among infants, so to have someone in our life as close as Melri who has shared this experience has been great.  When we shared in the Family Meeting about M, M and M the doctors were surprised and happy for us, that we knew of someone that this has happened to. Axton & Matthew are following a similar path.  Melri's insight was able to prepare us for the journey which laid ahead.

8.  I certainly can't leave out my Crohn's here :) - if it were not for my Crohn's I would not have been given the opportunity to deliver my babies at Mac.  Axton was born at the hospital he would have been transferred to anyways.  Rather than an hour long ambulance ride, he had a quick jaunt across the hall.  This got him the treatment he needed much faster than if he was born elsewhere.  I can't imagine how life would be different if I didn't have Crohn's!

This experience definatley knocked the wind out of us, but as you can see it was impossible for us to ever think we were alone.  We KNEW God was in control!  Not just in these days following Axton's birth, but he was preparing us and others literally YEARS ahead.  Just like Psalm 46 says... 1 God is our refuge and strength,  an ever-present help in trouble. 2 Therefore we will not fear, though the earth give way - BE STILL AND KNOW THAT I AM GOD! 

Sunday, 24 July 2011

Axton's Story 4 - Baby's Have Strokes Too

I have always known where the NICU is at Mac.  You walk right past it everytime you're on the 4th floor, red section.  I just never imagined I'd be on the other side.  As I made my way through the hallways of the NICU I was taken a back at how huge it was.  This first time through, with of the emotional state I was in, I wondered how I'd ever find my way back again.  This walk would become very familiar to me over the next 9 days.

Finally we made it to Axton's little corner.  I was desparately relieved to see that he was still fact he was sleeping very peacefully.  Despite this, I could not hold back the tears as I saw my little man in the isolette, hooked up to moniters and IV's.  It was so much for me to handle at that time!  Immediatly I was comforted by the most incredible nurses.  They totally understood my "state" and they began to lay everything out for me in the kindess manner imaginable.

When they had wisked Axton away a couple hours previously they found that he was having a seizure.  He had another seizure since then and they were treating him with an anti-seizure medication called Phenobarb.  The plan now was to find out the cause of the seizures, the possibilities for "why" seeming endless.  Some of these reasons were very scarey, others not so much.  And so the testing began - bloodwork, spinal fluid sample, (these first 2 took place IMMEDIATLEY - so quick, in fact, that they had the results back from some of the bloodwork already by the time I got to go see Axton for the first time.  The spinal fluid would take a few days.) an eye exam, several EEG's, 2 head ultrasounds, and an MRI would take place over the next several days.

The following day I was joined by Reg and we began to more fully understand NICU life.  Parents are still very much encouraged to participate in the care of their babies.  Feeding, diaper changes, taking temperatures are all the parents responsibility when you are there.  Nurses keep you as up to date as possible on test results.  (I just need to say...NICU nurses are the absolute best!  I have experience in the healthcare system and I have met my own fair share of doctors, nurses and medical students.  The NICU at Mac has, by far the most compassionate, loving, professional group of people you can imagine.  My emotions were still uncontrollable by that first full day and my tears came easily to say the least - I think I cried more because I was amazed at the staff than I did because of the situation.  I always thought the NICU was a bad place, but I was completely wrong!  There are no stressed out nurses, they are all very much in control and smiling and loving on all the little babies they take care of and the doctors have the most incredible bed side manor! I cannot say enough good things about them.)

Our time in the NICU was mostly a waiting game - waiting for this test or to talk to that person.  Once all of the test results were in we had what is called a "Family Meeting".  We had waited so anxioulsy for this day to come - we would finally have the results of what was going on with Axton and the reason behind his seizures.  The meeting consisted of a Neonatologist, a Neurologist a Social Worker and Reg & I.  This meeting was great and laid out in detail what they think happened.  Basically, his diagnosis was that he had a stroke sometime around the time of birth.  It happened on the right side of his brain in the area that effects fine motor skills.  They expected to see some delay on his left side but nothing too extreme, although he was far to young to tell yet.  They made no promises! The reason for the stroke will always remain a mystery, but they believe it "may be" related to his traumatic delivery - but they'll never say that for sure.

Reg & I left the family meeting relieved.  I'm sure it's hard to imagine that we were happy to hear that our infant son had experienced a stroke but we were so happy to have an answer to what was going on.  We now knew a little bit better of what Axton's future held.  We would know much more about prognosis once Axton's developement progressed, likely around 4 months.

On the 9th day Axton was discharged.  We had a long list full of followup appointments but we were free to take our baby home. As we left the NICU carrying Axton in his carseat I felt as if we had just robbed a bank!  I wanted to get out of there as fast as I could before they said "Get back here!"  :)  We brought our precious little boy home and he finally got to meet his big brother.  A new chapter in this journey was beginning.

Saturday, 23 July 2011

Axton's Story 3 - Happiness to Brokeness

Axton's first 36 hours were completely normal.  We had lots of time to rest and we were able to visit with Sarah, Mikayla and their mom Amber a lot.  Axton was a perfect baby, so easy going and laid back.  Our first night together was amazing - I couldn't be happier!  Axton was doing so well in fact, that the doctor considered sending me home on the second day, February 3rd.  She eventually decided that she would wait for the following morning to dishcharge me, which I was perfectly fine with.   The only thing (in hind sight) that was out of the "norm" on the 3rd was that I noticed Axton shivering.  The room was quite chilly, so I assumed that was the problem and I wrapped him up in another blanket.  The shivering seemed to stop, so I thought I had solved that problem!

Amber and the girls had been discharged earlier that day & Reg had gone home to be able to put Holden to bed.  Axton & I were left alone to relax before going home the next morning.  I recieved a phone call from my sister-in-law Shannon and we chatted away for a long time. Axton ended up pooping so Shannon and I said our goodbyes and I geared up to change his bum. He was very swaddled up, as most newborn baby's are, plus he had the extra blanket to keep him warm.  When I got him undone and ready to change I noticed he was twitching.  I watched this for a second - newborns make all sorts of strange expressions and movements - but what I realized is that this "twitch" was all happening only on one side.  His face, arm/hand and leg were all involved in this twich.  Sensing this was not "normal" newborn movement I took him across the hallway to the nurses station. 

I asked the first nurse I saw if this twitching was normal - the look on her face was horrified as she scooped him up and yelled to all of the other nurses to come.  Alarm bells started going off across the ward to let the other nurses of the emergency and code red was being called.  This was likley the most traumatizing moment of my life!  Nurses were filling the room and I was being asked a million questions.  Before I knew it the NICU team had arrived and taken Axton.  I was told that normally I could have gone with him, but since it was 7:00, shift change, I would have to wait until 8:30.  They would come and get me as soon as they were ready for me.  And so the hardest hour and a half of my life began....

To say I was completely & utterly broken would be an understatement.    My mind wandered to my helpless little boy - I literally had NO clue what was going on!  Was he dying?  All I could imagine was going over to the NICU and them telling me "I'm sorry, there was nothing we could do."  I was also crying, and the crying would not stop for another 24 hours or so.  Being hormonally imbalanced from giving birth did not help my emotional state one bit!

Finally I recieved the call, I could go visit my baby.  I would now enter a place where I never hoped to go, but in hind sight I am so glad to have experienced - the NICU.

Friday, 22 July 2011

Axton's Story 2 - Oh What a Night

Part 2 of the story is Axton's birth.  Please be warned there is some "pregnancy/birth" terminology used here.  Hope you're all ok with that :)

At 11:39 (why I remember this detail, I don't know!) and I had a mild little cramp.  I went back to sleep, but was awoken by another little cramp 9 minutes later...then another after 9 minutes.  I had had contractions like this over the past few weeks, but they had always been irregular.  I decided to go downstairs and tell Reg, (who had unwisely chosen to stay up and play video games, rather than go to sleep) that I thought this "may possibly" be it.  I cannot stress enough how mild these cramps were...they were nothing...but since they were "regular" I knew they were possibly something.  VERY early labour I presumed.  Although I still wasn't positive they wouldn't stop like every other time.  At this time Reg totally stepped it up and took control.  I was in complete denial that this was REAL, but he wasn't fooling around, not with this storm, which was only going to get worse upon us.  He called his mother to come watch Holden (what a trooper..she had already lost a night's sleep 2 nights previously awaiting the birth of the twins) and we were out the driveway as soon as we saw her vehicle coming down the road.  With a quick "Be careful, the roads are REALLY bad" from her and a "This is probably nothing" from me, we were off on the drive of a lifetime.

My labour continued to be questionable with contractions being VERY mild (nothing worse than menstural cramps) and irregular.  I was extrememly comfortable on the drive.  I just kept telling Reg "Drive as slowly as you need to...we've got all the time in the world.  Safety is #1, etc, etc, etc."    The roads were extrememly tretcherous...which Reg would probably say is an understatement.  We would have never made it had we driven anything but the big 4x4 truck.  It was intense, to say the least!!  We made it to the hospital 2 hours after leaving home. (this drive would normally take one)  I was still very comfortable and so glad we had made it while I still had lots of time for an epidural :)

Once we got up to Labour & Delivery (they knew we were coming) they asked us to wait outside as there was an emergency situation taking place.  They told me "You don't look to be in hard labour so can you just wait out here until we call you in?"  Of course, no problem!  We waited about 20 minutes until they were ready to take me into the assesment area.  Once in there they put moniters on me to see how regular/intense my contractions were.  I asked the nurse in charge of me what she thought and she said "We won't know forsure until the doctor checks you but to me it looks like you're in early labour ...don't worry though, we won't send you home in the storm.  You can stay here and wait for things to progress."  Perfect!  Just what I had suspected, lots of time for that epidural!

A few minutes later the doctor came in to check me.  As soon as she "got down there" her eyes lit up.  The nurse got excited and told me "oooo this is going to be good news"  The doctor, after being speechless for a moment looked at the nurse and said "This girl is is 8-9cm dialted...we need to get her to a delivery room right now!  If her water breaks we're in big trouble!"  As soon as she finished saying that, BOOM, my water broke!  This is when everything hit the fan...nurses came running, yanking wires out of the wall, other nurses calling "ruptured memebranes, ruptured membranes!" across the whole unit.  This is also the point when I realized there would be no epidural for me - oh my word!  How could I be ready to give birth to this baby, yet I basically had no labour?  I had a new understanding for the TV show "I Didn't Know I Was Pregnant"!  I wasn't ready for this, but I really didn't have long to think about things.

They rushed me across the hallway so quickly, it was incredible.  The looks on the faces on the ladies that had registered me just moments earlier were priceless!  I was into the delivery room and on the delivery bed just in time to start pushing.  Things, although faster than we were all ready for, were still going normally at this point.  Turns out we had the same delivery nurse we had had for Holden (which I absolutely adored!) and we were also being joined by a midwifery student from my cousin's class.  Things were starting off very well :)

It certainly wasn't long before I had the urge to push, so the nurses gave me the "go ahead".  From my very first push it was evident that Axton was in distress.  The nurse and midwifery student went from calm & relaxed to intense and worried.  They got on the phone immediately to the Neonatal team who were there within a minute or 2.  This group of at least 10 people were joined by another nurse and two OB's.  One of the OB's took immediate control of the situation, which was not getting any better.  (Reg tells me he had been watching the heart rate moniter as Axton's pulse was dropping.  One of the nurses noticed him watching and removed the moniter from my belly.  The last number Reg saw was 30 - this is not a good number for a baby's pulse to be at!!)  The OB's and nurses just kept telling me "Don't stop pushing, this baby needs to be born NOW!"  I was pushing, & pushing!  I was not even allowed to stop during the breaks between contractions.  Finally Axton got into a position where the OB could reach him, thankfully because on top of everything else his shoulder became stuck.  She reached in did some manouvering to reposition Axton and then pulled him out.  It was February 2, Groundhog Day, 4:28am...our parking pass said 3:28am!

Little Axton had been born, but the ordeal was far from over.  He was limp and purple and not making a peep.  It was very scarey for me!  He was immediatley wisked away to the corner of the room to be attended to by the Neonatal team.  I couldn't see him as there were so many people surrounding him, talking very quietly and working on him. There was not one thing I could do at this point but pray and trust.  I had done everything in my power for this baby and now it was up to God and the Neonatal team.  I could do nothing more.  After what seemed like an eternity, Axton began to make little noises, and then fianlly a cry.  Not a great cry, but a cry none the less. Axton's lungs were full of fluid from his fast delivery so the team suctioned him out. 

He seemed to be perking up by the minute.  Eventually the Neonatal team was confident that Axton had made a good enough recovery and so they went on their way.  About half an hour after his birth Axton seemed to be recovered and we were able to hold him.  His colour was still not great, and he was very sleepy, but it ws wonderful to hold him.  I assumed he would be fine now but it was only a minute or two before the nurses realized his breathing was still not good.  He was grunting - very much like our little pug dog Zoe.  Axton was wisked away again and the Neonatal team was called back for a second time.  After more suctioning and observation and about 20 more minutes Axton was given back to me.  This time it was for good.

At this point everything was back to "normal".  We spent a little while longer in the delivery room and then we were taken across the hall to the ward.  We passed through the waiting room on the way out.  This is the same place we were asked to wait during the emergency.  We had met a woman there who was waiting for someone else and her eyes almost bugged out when she saw me in the wheelchair carrying my baby.  It wasn't more than an hour and a half since I had seen her last and at that point I was barely in labour...or so I thought!!

Thursday, 21 July 2011

Axton's Story

Almost 6 months ago our son Axton was born.  I was blessed to have had a perfect pregnancy despite my history of Crohn's disease, but when it came to Axton's delivery and the time that followed nothing went according to plan.  In hind sight I have actually come to realize and accept that what happened was "according to plan"...according to God's plan.  This is the journey that He has chosen for us and Axton.

The following series of blogs will be Axton's story.  Hopefully it will make you laugh, it may make you cry, and you may not be interested at all :)  I am mostly writing this for myself to help me in the processing of the situation.  So much has taken place - I feel that I need to write it all down.  This can also serve as a means to update everyone with whom I may have only shared bits and peices of the story and to let you know where Axton is at today.

I'll be honest...this is going to be a long story :)   I will start at the very beginning and see where it takes me. 

This journey began, obviously, with my being pregnant with another wonderful baby boy.   His due date was February 10th, 2011 but since I had gone 2 weeks early with his older brother Holden I didn't expect to go full term.

For a few days previous to Axton's birth weather men had been predicting the storm of the year....perhaps the century.  They were calling it "Snowmageddon" and it was scheduled to hit late in the day February 1st and continue on snowing for 24 hours.  Sensing "Murphey's Law" we prepared ourselves and our big 4 Wheel drive truck for the possibility of labour while driving to the hospital during the onslaught of "Snowmageddon".   We were planning to have Axton at McMaster Children's Hopital in Hamilton.

So February 1st came - I had an appointment with my OB that day and we were also planning a visit to our brand new twin neices, Sarah & Mikayla who had been born the previous day at Mac.  At my appointment the OB checked me and found that I was 3-4 centimeters dialated.  This was very exciting and I'm sure she knew I was ready to "pop".  Before leaving the appointment she made sure we had a way to get to the hospital just in case I did go into labour during the night.  Of course living on a farm we have many large vehicles at our diposal.  The doctor felt good about this and sent us on our way.  We went straight over to the hospital to visit our little neices.  We had a nice long visit with them because we were certainly in no hurry - I was really hoping I'd just go into labour right there at the hospital.  After our visit we made a stop at the Limridge Mall to do some walking, to see if that would bring on anything. We walked...intensly for about an hour and half.  I had some good little contractions and one really big one while walking through Sears, but eventually everything petered out.  I didn't really want to go home knowing this storm was iminent but there was no telling when Axton would decide to make his debut.  It could be a few hours or a few days.  And so home we went.

Everthing was business as usual that evening.  Much to my dismay, I never had any more contractions.  I went to bed at around 9:00.  The storm began while I was asleep...

Tuesday, 31 May 2011

Turning 20...

This week my mother turns 50 and my Father-in-Law turns 60.  I hope you guys don't mind that I just posted your ages!  As I laid in bed last night suffering a short bout of insomnia I was thinking about them both and the parties we will be celebrating this coming weekend.  It reminded me of when I turned 20.

 For some reason or another I dreaded turning 20.  It seems so silly to me now, but it's true.  I was literally stressed about the whole ordeal!  (I tend to stress out about very silly things...likely the source of my Crohn's, haha!)  I think it was because I knew so many things were going to happen in the coming 10 years.  Reg and I were in a serious relashionship at that point in time, so I knew we would be getting married, and I knew we'd (hopefully...depending on my Crohn's situation which was very active at the time)  be having kids.  I wanted to be done having kids by the time I was 30.  Mostly I think I was stressed because I'd be leaving childhood behind and be moving into a new stage of my life - adulthood. 

Everything I was stressed about happening happend.  There have been some moments over the past 9 years that were definatley worth stressing for - getting married and planning a wedding ( I NEVER want to do that again!!) a Crohn's flareup that led to my second surgery, the death of my Grandfather, 2 pregnancies (which thankfully went smooth as silk) the birth of Holden (which involved a few hiccups) and the birth of Axton (which involved LOTS of hiccups, including him having a stroke and stay in the NICU), and I'm sure there have been many other stresses too!

I have not been alone, not even once throughout any of these situations.  I certainly couldn't have gotten through any of it without my Lord!  One of my favourite verses is 2 Corinthians 12:9

But he said to me, "My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me.

I am not nearly as stressed to turn 30 as I was to turn 20.  Perhaps it's because I've learned, through all of these things, that I am not alone in this life - God will carry me through!  When I am weak, that's when He is strong!!