Latest Update - Updated 12/16/2008

DECEMBER 16 - 2008
 
We are home now!  We were able to come home on Thursday afternoon. Katherine is recovering well, and her blood pressure is starting to normalize.  Richard is currently working a part-time schedule to be able to helpout at home and keep up with the workload at work.  Jessica is being greatly enjoyed by both of us and our visitors too.  :) 
 
Pictures have been added to the site: Jessica’s Photos
 
DECEMBER 10
 
Jessica Johanna Brooks - born by C-section on Monday December 8th at 2:49 PM.  6lbs, 19 inches long (~13 inch head).  Photos to follow.
 
Mother and baby are doing well.  Katherine’s BP is up and hemoglobin is down...but things are getting back to normal slowly.  We’re still in the hospital and may come home on Thursday (D.V.).
 
Thanks for all who having been praying for us!  God IS Great!
 
DECEMBER 3
 
Just to let you know that because of Jessica’s position in the womb it is necessary to have a C-section and it is currently scheduled for this coming Monday (Dec. 8th). She is almost 38 weeks now and is approx. 6 lbs or so...still kicking up a storm! Katherine’s blood pressure is very good and the fluid retention is not too bad. God has been so good to us and we appreciate your prayers for the days ahead.

Thanking the Lord for His mercies and faithfulness.

Dad & Mom :)
 
OCTOBER 18
How time flies, it seems like yesterday that we held and cuddled with Elysha and at the same time it seems like years.  As we approach Elysha’s birthday (October 27th) we continue to thank the Lord for the precious memories we have and remind ourselves that the arms of Jesus are SO MUCH BETTER!  Elysha’s grave stone finally came in and has been installed (Grave Stone).
 
We now have the DVD of the funeral and are happy to make copies available if you’d like one or know someone who would.  In time we might be able to have the video files online, but not yet.
 
Our dear little Jessica is keeping us ’occupied’ as we anticipate her arrival in December!  She keeps kicking and probing and moving lots inside her haven while ’mom’ gets used to the lack of mobility.  Katherine is much healthier this pregnancy and all her doctor’s visits have been reletively uneventful. (Blood pressures normal, no significant fluid retention...etc.)  How thankful we are and realize that none of this if ’for granted’.
 
We have updated the photo pages with a couple of pictures of Jessica’s 3D Ultrasound shots.
 
AUGUST 18 - Funeral Files
We have begun a new page of funeral related downloadable files and links.  This page will be updated further when video and presentation files are ready.
 
Click on the following link to see the new page:  Elysha’s Funeral
 
 
If you have any questions or would like to contact us for more details, please don’t hesitate to use the Contact Us form.
 
Also we’re pleased to have our first ’glimpse’ of Elysha’s little sister: Jessica (20 Weeks)
 
AUGUST 11
Our apologies for the delay in relaying the results of our fetal echo last Thursday.  It was a long day followed by a very busy weekend.
We are again rejoicing-no major heart defects are detectable. Our precious second daughter - Jessica Johanna Brooks - is heart healthy!!
Jessica means "God beholds" (or "sees") and Johanna means "God is Gracious".
It was bittersweet going back to Sick Kids.  As soon as we stepped off the parking garage elevators the paging system went off making a stat call for cardiovascular surgeons - the same page we heard for Elysha back in May.  Visiting friends in 4D was also hard-part of Elysha will always be there.  While we are happy to know that Jessica will not go through what Elysha did so the amazing services at Sick Kids will not be needed, we will definitly miss everyone there. 
We miss our little lamb.  Our faith in Jesus Christ does not mean we do not cry for her or feel the emptiness of the house without her.  The difference is the hope - divine certainty-we have that we will see her again with a perfect body as God intended her to be.
 
We will be posting the funeral video and tribute video online soon. 
 
Thank you to all who have prayed faithfully for us and continued to do so while we awaited the results for Jessica.
 
 
AUGUST 5 PM
We had a Radiologist, not a technician, do our ultrasound today - which meant we found out everything today.
 
No visible defects were detected.  We are rejoicing as we’re sure you are as you read this.  He still said it was good we were going to Sick Kids as there’s things he can’t see and he’s not a cardiac specialist but nothing was obvious i.e. no dextrocardia, no TGA seen, and he found four chambers.  The baby is also the right size for the dates.  VERY active and not cooperating with the technician :)  Until the end when he asked us if we wanted a picture.  Richard said, "Okay baby, show us your good side".  The radiologist put the probe back on and the baby flipped right over, face up for the perfect shot!
So it looks like we won’t need to buy any new clothes for this baby since she’ll be able to use what we already have!
 
Our appointment at Sick Kids for the fetal echo is this Thursday at 10:45am. 
 
AUGUST 5 AM
Today was Richard’s first day back at work.  It will be an adjustment for both him and Katherine as another ’new normal’ is invented.
 
What a wonderful week off though!  Some church friends paid for us to stay 5 nights at Deerhurst Resort in Huntsville, ON.  The package was a surprize to us and we didn’t know where we were headed till we were on our way.  At a certain point in our trip we were able to open a sealed envelope which revealed the location, menus (pre-paid) and possible activities!  Parasailing, hiking, swimming...and just plain old relaxing...    :)
 
JULY 28
Just before we head off to our week away destination (we still don’t know where...) we wanted to add one more comment about the Lord’s goodness to us.  Since it would have been Elysha’s 9 month birthday yesterday we read Psalm 9 and were delighted at the first few verses.
 
 1 I will praise You, O LORD, with my whole heart;
         I will tell of all Your marvelous works.
 2 I will be glad and rejoice in You;
         I will sing praise to Your name, O Most High.
 
What a gift from the Lord, to remind us that Elysha has a ’whole’ heart now and that her praise is perfected.  As such we leave today with hearts that are praising the Lord for His ’marvelous works’.
 
JULY 27
Elysha would have been 9 months old today.
 
Our heartfelt thanks to all of you who have been a part of Elysha’s life, and ours, over the past weeks and months.  There were well over 300 people in attendance at the funeral - the chapel was at capacity so if everyone came that wanted to but couldn’t it would have been very crowded!  We will be posting pdf files of the messages given at the funeral as well as video of the funeral itself.
 
We sorrow but with hope and are thankful that our prayers are answered; she no longer needs prayer.  Elysha is healed and with Jesus.
 
We will be replying to all of you who were so kind to send greetings and messages of support over the coming weeks.  It will be good for us to do that as a reminder of all the support we have received.
 
Some of you may already know, or may have suspected from a previous post, but for those who don’t know, we are expecting our second child in December.  We found out before Elysha’s last surgery and we were able to "tell" her that she was going to be a big sister.  Because of the risk of having another child with congenital heart defects, we will be going back to Sick Kids in two weeks for a fetal echocardiogram to see the health of this child.  For those interested in the results, we will post them via this site.
 
Thank you for your prayers.  We will be out of email/website/phone contact for the next week as we learn to adjust to life without our precious little lamb.  Please continue to pray for us.  We miss Elysha very much.
 
______________________________________________________
 
Bookmark by Rachel Brooks (Elysha’s Aunt): Little Lamb
 
VISITATION
Thursday, July 24 2-4pm & 7-9pm
Friday, July 25 2-4pm
Glen Oaks Memorial Chapel
3164 Ninth Line, Oakville, Ontario
(Entrance is off of Ninth Line only)
 
 
FUNERAL
Saturday, July 26
11am
Oakridge Bible Chapel
2250 Eighth Line, Oakville, Ontario
 
 
 
July 22 (PM)
Elysha Elizabeth Brooks
October 27, 2007 - July 22, 2008
Beloved and cherished gift of God to Richard & Katherine Brooks. Loved and dearly missed by grandparents Alex (Sandy) and Lorna Smith and Don & Elva Brooks; Aunt Rachel Brooks, Uncle Mathew & Aunt Sarah (Brooks) Van Essen; Cousins Caleb, Timmy, David, Lily, Linia, & Nehemiah Van Essen; Great Grandparents Nelson & Eileen Brooks. Remembered by many great aunts, uncles, and extended family across Ontario, the UK, New Zealand, Australia, and Dubai.
Our heartfelt thanks to the amazing staff at the Hospital for Sick Children - Cardiac Critical Care, Unit 4D, Gen Surg, Neurology & Palliative Care; our incredible Pediatrician, our Halton Region Occupational Therapist and the team at CCAC/St. Elizabeth Health Care - whose care for Elysha extended far beyond her medical needs.
Visitation and Funeral details will be posted soon. All are welcome and encouraged to come and celebrate Elysha’s life.
In lieu of flowers, donations to the Hospital Sick Children, MSC (Missionary Services Canada) or to the local mission/charity of your choice in memory of Elysha would be greatly appreciated.
"My flesh and my heart fail but God is the strength of my heart and my portion forever." Psalm 73:26
 
JULY 22 (AM)
Day 47 - Elysha’s heart slowed to a ’stop’ last night at around 9:30 PM and we couldn’t detect a beat even with the stethoscope.  We gathered her in our arms and just before calling our Dr. to come make pronouncement of death we prayed together first "unto You we commit our daughter"...BUT our little ’cuddles’ wasn’t ready to go yet!  She gave a gasp and then another and we began to feel a faint slow heart beat which grew stronger and faster till she was back at 120 beats per minute w/ regular respirations and looking pinker than she has in three days!  So we went to bed and a similar thing happened overnight at 4 AM and 7 AM...each time her heart is not as strong as before, but it is almost like the heart and brainstem are in a battle to see who can last the longest...  
 
Our daily Bible reading today is from Isaiah 30:18 "Therefore will the LORD wait, that He may be gracious unto you...blessed are all they that wait for Him."  Here is a section of the text (Andrew Murray):
"the very thought of His waiting on us will give us renewed motivation and inspiration to ’wait for Him’.  It will also provide inexpressible confidence that our waiting will never be in vain...Rest assured that if God waits longer than we desire, it is simply to made the blessings doubly precious.  Remember, He waited thousands of years, "but when the time had fully come, God sent His Son" (Galatians 4:4). Our time is in His hands"
 
JULY 21
Elysha took a marked turn for the worse at around 2am.  She is very conjested due to heart failure - for those familiar with the dying process she now has the "death rattle".  While we have felt like we have been close before, the changes the Elysha is showing now are very evident that her body will shut down very soon, perhaps tonight.  We are earnestly praying for release for Elysha - it was a very long night last night.  We take some comfort in the fact she has no awareness of her condition and appears very comfortable.  But it still is very hard to watch and listen to. 
Our precious little baby is on Heaven’s doorstep; please pray she will enter in soon.
 
 
JULY 20
Day 45 - there hasn’t really been to much ’new’ news of late.  Elysha has had some coughing spells over the last few days...it sounds very congested and so it was no surprise that one of our medical team indicated that Elysha’s heart is starting to sound "thready" (starting to weaken).  Further signs of bowel necrosis (dying) are being seen.  This process of ’sloughing-off’ the bowel lining is apparently very painful, so her morphine is being kept up.  She hasn’t been registering any signs of pain or discomfort for which we thank God daily!  We really haven’t seen much sign of seizures recently...either they are now being controlled by the medications or there aren’t any ’good’ cells left to seize...hard to tell, but it results in her seeming much more ’relaxed’.
 
We really miss our beautiful girl and at times it really hits us (not always the same time either).  We continue to pray that the Lord would grant her rest and healing.  This ’healing’ could mean that God will return Elysha to us (in full health ~ heart, brain, etc.) OR perhaps even better for her He might return her to Himself (no more pain, tears, suffering, etc.).  The apostle Paul nearing the end of his earthly life put it this way:
 
"For to me, to live is Christ, and to die is gain. But if I live on in the flesh, this will mean fruit from my labor; yet what I shall choose I cannot tell. For I am hard-pressed between the two, having a desire to depart and be with Christ, which is far better. Nevertheless to remain in the flesh is more needful for you." Philippians 1:21-24
 
JULY 16
Today is Day 41 and it is my Daddy’s birthday - I just wanted to stick around to say my first "Happy Birthday to Daddy".  I wasn’t born yet this time last year.
 
My heart beats are slowing down now (less than 100 beats per minute) and my parents think I will be with Jesus soon.  It will be so good to be with Jesus and not experience any more tears, suffering, sadness or surgeries.  I am sad that I won’t be able to grow up with Mum and Dad and to see my little brother or sister, but Mum & Dad keep reminding me that we will all see each other soon since life is so short compared to eternity.  They will be sad to say goodbye to me, but are thankful that I will be with the best Caregiver in the universe (and beyond)...He even cares for Mum and Dad too!
 
Thank you to all of you who have been praying for me and my parents.  It is amazing how many have written and told us of other little children who pray for me every night...Wow, I do hope that you all come to enjoy what it means to really ’know Jesus’ and walk with Him closer through this experience...I have! :)
 
JULY 13
Today is day 38 since ’extubation’.
The last couple days Elysha heart has been slowing down and her respirations have been irregular.  She has had more frequent times of Cheyne-Stokes breathing (a noisy, laboured breathing "like marbles in the back of her throat").  These along with other signs indicate that she is nearing the end of her time with us.  Visibly her mouth is mostly open, her eyes rolled back, her colour pale and her breathing shallow.  We are thankful that she isn’t showing any signs of pain, distress or discomfort.  During a time of more ’alertness’ this morning we had a glimpse of her old self with two cute yawns (the first in a few weeks).  A number of ’apnea’ periods today and yesterday made us think the moment had come, but she has started breathing again each time so far.
 
We continue to pray with/for her, sing to her and hold her close as often as possible.  Our prayers are that the Lord will mercifully grant her rest.  "Safe in the arms of Jesus" 
 
Psalm 23 was shared with us the other day in a different light than I had seen it before (thank you brother ~ you know who you are).  The chapter starts out in third person (He) and then transitions to second person (You/Thee) starting at the line "Yea, though I walk though the valley of the shadow of death, I will fear no evil; For You are with me; Your rod and Your staff, they comfort me."  The change happens when we pass though the valley of the shadow of death (affecting all of us in some way).  God is nearer.
 
Two songs that just played on a CD in the background just now have the following words which we leave with you:
 
Words by Chris Rice...
1) I just want to be with You
 
How far are you, how close am I
I know your words are true and I don’t feel them inside
Still I believe you’ll never leave
So where are you now

You’re all I have, You’re all I know
Your breath is breathing in my soul
Still I am gasping, aching, asking
Where are you now

Cause I just wanna be with You
I just want this waiting to be over
I just want to be with You
And it helps to know the Day is getting closer

Every minute takes an hour
Every inch feels like a mile
Til I won’t have to imagine
And I finally get to see You smile

My journey’s here, but my heart is There
So I dream and wait, and keep the faith, while You prepare
Our destiny, til You come back for me
Oh, please make it soon!

Cause I just wanna be with You
I just want this waiting to be over
I just want to be with You
And it helps to know the Day is getting closer

Every minute takes an hour
Every inch feels like a mile
Til I won’t have to imagine
And I finally get to see You smile

Every minute takes an hour
Every inch feels like a mile
Til I won’t have to imagine
And I finally get to see You
 
2) Untitled Hymn (Come To Jesus)
 
Weak and wounded sinner
Lost and left to die
O, raise your head, for love is passing by
Come to Jesus
Come to Jesus
Come to Jesus and live!

Now your burden’s lifted
And carried far away
And precious blood has washed away the stain, so
Sing to Jesus
Sing to Jesus
Sing to Jesus and live!

And like a newborn baby
Don’t be afraid to crawl
And remember when you walk
Sometimes we fall...so
Fall on Jesus
Fall on Jesus
Fall on Jesus and live!

Sometimes the way is lonely
And steep and filled with pain
So if your sky is dark and pours the rain, then
Cry to Jesus
Cry to Jesus
Cry to Jesus and live!

O, and when the love spills over
And music fills the night
And when you can’t contain your joy inside, then
Dance for Jesus
Dance for Jesus
Dance for Jesus and live!

And with your final heartbeat
Kiss the world goodbye
Then go in peace, and laugh on Glory’s side, and
Fly to Jesus
Fly to Jesus
Fly to Jesus and live!


JULY 12
Today Elysha’s Respirations are a high of 18 but mostly 14-15
Heart rate 104 instead of the usual 120.

She is breathing really weirdly.
So it may be near the end now.

Only the Lord knows.

So continue praying for strength for whats ahead for Richard and Katherine and the family.

Thank you,
Rachel Brooks
(Aunt)
JULY 7
We thank the Lord for a good visit with friends and family this past weekend, and for a very good sleep for us last night.  Today is day 32 since Elysha’s breathing tube was removed.  In the words of our pediatrician yesterday, "I’m shocked that she is still here and considering everything that she looks so good!"  As such he indicated that he "wouldn’t even hazard a guess as to how much longer we have with her".  She continues to have almost constant seizures and they continue to take a toll, but she remains a fighter as always.  She is exibiting more signs of her lack of ’cortex’ brain function (floppy arms, legs etc.) and that is likely due to the continued seizure activity. She is much more ’out of it’ now, but as the nurse said "her heart is still very strong". It is ironic that the strongest organ in her right now is her heart. 
We continue to rest on the fact that each day is ’numbered’ (that’s more significant than just ’counted’) and that each day though it may be ’shocking’ to us is fully known by our God and Saviour.  Since before she was born we rested in the thoughts found in Psalm 139:13-18 (see below) and we continue to rest here:
 
For You created my inmost being; 
       You knit me together in my mother’s womb.

I praise You because I am fearfully and wonderfully made; 
       Your works are wonderful, I know that full well.

My frame was not hidden from You
       when I was made in the secret place.
       When I was woven together in the depths of the earth,

Your eyes saw my unformed body.
       All the days ordained for me were written in Your book
       before one of them came to be.

How precious to me are Your thoughts, O God!
       How vast is the sum of them!

Were I to count them, they would outnumber the grains of sand.
       When I awake, I am still with You.

 
JULY 4
There were some visible changes in Elysha yesterday afternoon.  She is sleeping most of the day now and her breathing is very shallow with increasing periods of apnea (no breathing).  The doctor visited yesterday and indicated that these signs, along with others we are seeing, usually indicates a person will pass away in a matter of days; she would be suprised if Elysha is still alive in week.  However, she also said that given Elysha’s propensity for not behaving as expected, we won’t be surprised if she lives beyond this week!  Ultimately it is the Lord who has her life in His hands and we are thankful for this.  What peace!
He has answered our prayers in that Elysha is much more settled and comfortable now.  We are able to sleep for longer periods of time at night which has done wonders for our ability to function during the day. 
We hope that today, Independence Day in the U.S., will also be Elysha’s independence day from the confines of her broken human body, and will be freed to join the redeemed in Heaven in singing the Lord’s praises.  But whatever today brings, we still love and praise HIM.
 
JULY 1
"The palliative care doctor has indicated that she believes that Elysha is now in the final stages. This stage is called ’active dying’ (where the body organs start shutting down (bowels, kidneys...etc.)) We know that she is in the Lord’s hands and will soon be with Him. Please do pray for Richard and Katherine during this trying and tiring time when they are getting little sleep. The seizures are distressing to watch and listen to. How thankful we are for the Everlasting arms which are underneath and for the promise that He will never leave us nor forsake us.""
 
JUNE 30
Just got off the phone with Richard and Katherine,

Elysha has had 3 Big seizures today with in the last couple hours... where she stopped breathing and then turned blue...but then started breathing again. All three times they thought it was the end...but Now she is all pink again.

They don’t know if this means the end is near or if she is just going through a bad time.

But I know that they continue to need your prayers!! Please continue to bring them before the Lord who is in control and knows what they need.

Thank you for your prayers,
Rachel Brooks (Aunt)
 
*Elysha has had two additional seizures since the phone conversation.  The last one had her not breathing for three minutes.  Please pray.
 
JUNE 27
Elysha is 8 months old today! She has gone through so much in such a short time; but each day we realize more and more how the Lord is with her.

We do not know if she will make it to her 9 month "birthday" or even to tonight but we will celebrate her life and give thanks to the Lord for every minute she is with us.

We invite you to view the video on youtube via the link below from a family who, though in a different medical situation, expresses very well what we are going through right now.
 
 
Or go to youtube.com and type in "99 Balloons"

We hope you are as blessed and challenged by it as we are. With thanks to Roy for sending it to us.
 
JUNE 24 Morning
I just got off the phone with Richard and Katherine.
So here is the latest news.

Elysha is having a lot more visible seizures. And thus is drooling more... which means they have to suction a lot more,...which means .... more disturbed nights.

Richard was able to get another week off work. But they are not sure what will happen with that when the week is done. So pray about that too.

Mum (Richards Mum) had to go back to Zambia on Saturday. It was hard for her to leave. So pray for her and my dad too. Also Katherine’s parents too.
Basically just the whole family. Its hard for everyone.

So please keep praying for them. For strength and wisdom.

Thank you,
Rachel Brooks (Richard’s Sister)
 
JUNE 18
 
After a very rough weekend, we had a long chat with our paediatrician and palliative care doctor and adjusted Elysha’s morphine.  She is much more comfortable now and has periods of "alertness" as she did in the hospital.
 
There were some noticeable changes in her appearance during the night and this morning which would indicate the beginning of conjestive heart failure, but then this afternoon she’s "pinked up" again.  Elysha was never one to go by the book!
 
We have been so touched by the number of strangers who have joined in prayer for our little girl and ourselves as well.  The tangible gifts as well are very much appreciated.  Cooking and laundry just don’t seem as important now.
 
We continue to enjoy our time together...parents, give your children an extra long hug tonight.
 
Richard and Katherine
 
JUNE 14

Our first night home was an adjustment as Elysha gets used to the lower dose of oral morphine. The nearest we can describe Elysha now is that we are back to the newborn stage - lots of crying, waking every few hours, feeding every few hours. BUT we are thankful that most of the time she can be comforted fairly quickly.

We wanted to clarify just what happened with Elysha as some of our dear followers are under the impression that Elysha is better.

Elysha has suffered irrepairable brain damage to her cortex (upper part of the brain) and part of her brain stem. The part of her brain stem that is fully functioning is the medulla oblongata - it controls breathing, reflexive swallowing, hiccupping, yawning...basically anything that the body does that is not a conscious effort.

Elysha is blind, deaf, has no sense of touch, no sense of self, no memory, no understanding of anything around her. The "processing center" of her brain is no longer functioning. She does open her eys and will blink when there is loud sound but that is because her inner ear is still functioning (it is controlled by the brain stem). The sound does not travel to her processing centers.

Eventually, her brain stem will cease the drive to breathe or her shunt will block; she will pass quickly if that were to happen.

We love our little Elysha and thank the Lord for her life. We know the Lord has a purpose and plan in all this - and we may never know why this happened. We rejoice in that fact that there is a reason.

We really appreciate and need your prayers in this adjustment period.

"How sweet to hold a newborn baby and feel the pride and joy he gives. But greater still the calm assurance this child can face uncertain days BECAUSE HE LIVES."
 
 
JUNE 13
We are coming home tonight!  Elysha was stable enough and came off the i.v. morphine with no complications. 
We do not know how long we will have at home, but are so thankful for this time.  We will enjoy every minute and thank the Lord continually.
We will miss the amazing staff at Sick Kids-doctors, nurses, surgeons, respiratory therapists, neurologists, occupational therapists, physiotherapists, social workers, ward clerks, dieticians...the list goes on.  We will never forget you and thank the Lord for your kindness and the amazing use of your gifts.  We will back in August for our fetal echo-hope to see some you then!
Thank you also to all of you who supported us through prayer and practical means.  We would appreciate your continued prayers and will update frequently as the days go by.
 
JUNE 12
We had a surprise visit from a fellow CHD facebook parent - thanks Marsha, it was nice to meet you!
Elysha was very alert yesterday.  We enjoyed lots of snuggles and got some great photos.  Today Elysha was a little more pale and dusky today although her sats were normal for her.  She is also not as alert.  The staff will assess her tomorrow to decide whether or not we will go home...not likely as the weekend is difficult to get services going for home care. 
We are awaiting results of the evoked potential to see if there is more brain stem activity than initially thought.  It won’t change the outcome but will give us a better idea of how to keep Elysha comfortable in her last days.
We have had so many wonderful visits from the staff at Sick Kids who have looked after Elysha. We are so happy to be in a place that has such caring individuals. 
Thank you to everyone who have been calling, visiting, emailing, providing food and praying for us during this time.  The Lord’s peace is certainly upon us in all this. 
 
JUNE 11
 
Well we’re now back up in "4D" (Rm 29).  A decorated poster was made by the nurses and stuck to her door "Elysha’s Room" - they are amazing! 
 
Today things are ’moving along nicely’...namely her bowels are now ’producing’  :)  It was a long and painful buildup for her, but today she has filled her diapers three times already...and we are SO thankful to the Lord for these little (but significant) answers to prayer. 
 
The plan is to start reducing her morphine and increasing her NG feeds all with a view to removing her central line I/V access as soon as possible.  She has tolerated her feeds well and is now up to almost 50 ml every 3 hours.
 
We met with the Palliative Care team and have begun some very infomative discussions about our going home and what can be provided ’in the community’ to help in providing continued comfort to Elysha should she keep hanging on. 
 
JUNE 9
 
Elysha is a fighter!  Her levels have dropped a bit but she is still comfortable. We will be moving up to the fourth floor (cardiac wing) once there is a bed available.
 
We had a visit from Minnie Mouse - the REAL Minnie Mouse!
 
We are very appreciative of all the visits we’ve had - the days are long here.  But visits from friends and family certainly brighten the day.
 
 
JUNE 7

Elysha is still here. She is very calm so that is good.
There really isn’t much to update you on. But I know alot of you are wanting an update so I just thought I would send out something.

Richard and Katherine slept well and there were not huge episodes with Elysha or anything so that was good.

They are now just praying that she stays alive till Grandma Brooks get here on Sunday at 3:30pm. But they hope that it won’t be too long after that. Especially since Grandma Brooks is only here for 2 weeks.
But they know God’s timing is perfect and they are just trusting him and his perfect timing.

There have been some visitors which is nice for them and good for the people who come too. The visitors got to hold her and that has been good for them.

Anyway its just a waiting game. Just continue to pray cause waiting is really exhausting.

Again if you live the area please don’t hesitate to come visit. You can just call the cell phone # that Katherine sent out in the last e-mail... when you get here or are going to come. But please don’t hesitate to visit.

-Rachel B.


JUNE 6
Elysha’s was removed from the ventilator yesterday at 10:30 am.  The doctors and nurses were expecting her to pass away within minutes, at most a few hours.  We are now at over 24 hours and she is still with us.  She has always been a fighter!!
The first 12 hours were extremely difficult as the seizure activity increased and her breathing was very laboured.  However, after increasing her morphine, Elysha calmed down and is now very comfortable.  Her swelling has decreased significantly to the point where she is even opening her eyes and making sucking motions just like when she would be sleeping and her soother would fall out.  These are all basic reflexes though.  When her eyes are open it is obvious that our Elysha is not there.  In one sense it is heartbreaking in another it is comforting having these last hours with her. No one expected her to still be here.
She is still receiving nutritional supplements and morphine - comfort measures. 
We’ve been saying to each other that she is waiting for Grandma Brooks to arrive on Sunday. 
Plans are now in place for palliative care at home.  This will take until Wednesday to put in place so until then we will remain in our private room in Critical Care.  The visiting restrictions are lifted in this case so if any of you would like to visit at any time, we would be happy to visit.  Just call our cell (905) 616-2556 ahead of time.
We have been so blessed with the love and care from all the staff at Sick Kids.  Elysha’s previous doctors and nurses have been in to say goodbye to her.  It is really comforting to know she is surrounded by those who care for her even in this hospital setting.  This is her second home really. 
The Lord has granted us such peace during this time.  While there are still moments of tears, we really have been quite comfortable here and even enjoyed a few laughs with the staff.  We will be sad to leave, especially under these circumstances. 
Tentative funeral plans have been made but given that Elysha is still hanging on, we will hold off sending the details out until afterwards.
Thank you to all who have sent messages of prayers and condolences to us.  Our internet access is now limited being in the room we are so we are unable to respond individually at this time.  But please know they are greatly appreciated.
God is good.
"My flesh and my heart fail, but God is the strength of my heart and my portion forever." Psalm 73
 
 
 
Two updates for today - see morning update too.
JUNE 3
EVENING
This is probably the hardest entry we have had to write so far.
At our family meeting at 3:30 today, we were told that Elysha has no higher brain funtioning left.  Her brain stem is still in tact but between the 30 minutes of CPR on Friday and the continual seizure activity since then, there is no brain activity left.
We have decided to stop the anti-seizure medication.  Tomorrow afternoon bloodwork will be taken to ensure the meds have completely left her bloodstream and once that has happened, we will be moved to a private room and Elysha will be extubated.
We do not know how long she will live beyond that. She could pass away immediately or be able to breathe on her own for some time. 
We are SO thankful to Sick Kids staff for their loving care of Elysha.  We have had visits from some of Elysha’s previous nurses and surgeons which has been so comforiting over the last few days.  Elysha has touched so many lives.  Her smiles and giggles will be missed.
We have begun preliminary funeral arrangements which we will post details of once we know.
Thank you to everyone for your prayers and words of encouragement.  Please pray for safety for Richard’s Mum as she is making plans to fly in from Zambia on Sunday. 
"Because HE lives we can face tomorrow"
 
JUNE 3
MORNING
Elysha remains on a continual EEG monitor as she is having constant seizures. They are trying to adjust her meds but so far they have just slown them down slightly. She no longer has outward signs of the seizures but her blood pressure and other levels go off when she seizes.

We are awaiting one more test from neurology which will complete the picture of what is going on and where we go from here. There is a family meeting scheduled with everyone involved at 3:30 today to discuss what to do.

We feel the end if near for our precious little girl. While we would love to have her for a little while longer, we do not want her to suffer needlessly. Please pray for grace for us to make the right decision when the time comes. Also that the meeting will go ahead as scheduled. It may be cancelled if something urgent comes up for any of the doctors involved. Waiting while knowing things but not "officially" knowing is difficult.

With heavy hearts, but holding on to His hand,
Richard and Katherine
 
JUNE 2
MORNING
 
Yesterday, Elysha was succesfully removed from the ECMO which is a big answer to prayer.  We were anticipating a long wait during the cardiac catheter however it was over in two hours.  The surgeons had thought (hoped) that the issue on Friday was caused by a blockage in her shunt but there turned out to be no evidence of that.  They had planned some intervention if that was the case (hence the anticpated wait) but as that was not needed, they finished much sooner. While it was good the cath went well, it means there are more questions than answers as we still have no idea what caused this in the first place.
 
Elysha began having siezures last night.  She remains in a coma but still has periods where she is able to breathe above the respirator which is a hopeful sign.  However, the seizures ido ndicate neurological damage. 
 
She will have an EEG (electroencephalogram) to determine her brain activity. Following that, there will be a surgical consult to discuss what, if any, cardiac surgery will be done.  If there is brain damage, surgery will not likely occur as it will too dangerous to do. 
 
In all this we are thankful for the peace the Lord has granted us.  We "do not sorrow as those who have no hope". 
 
We will try to update this afternoon/evening once the EEG is done. 
 
MAY 31
 
Much has happened in 48 hours.
 
Elysha’s illiostomy reversal was successful.
 
However, at 11:30 am yesterday, as we were waiting for the surgery to be over, we were ushered in to a private room and were met by a very serious looking surgeon.  "It’s not good" were the first words out of his mouth.  Apparently, as they were about to wheel Elysha out of the OR to recovery, her blood pressure suddenly dropped and she stopped perfusing oxygen.  We had heard stat calls being made to the OR for our cardiologist and three different cardiovascular surgeons but did not really think any thing of it until a social worker came looking for us, not aware we hadn’t been told of the problem yet.
 
They did chest compressions for 30 minutes but Elysha continued to deteriorate. The surgeon even said, "She’s worse now than 20 minutes ago. I really don’t know what’s going to happen".  The cardiovascular surgeons were called in to put Elysha on an ECMO which is a heart/lung bypass machine.  The end result is that we are now unexpectedly back in the Cardiac Critical Care Unit, Elysha is still on the ECMO and on ventilation.
 
A brain ultrasound showed no bleeding in the brain or swelling; time will tell of the damage, if any, to her brain from the poor perfusion. She was never totally deprived of oxygen which we are thankful for.
 
The plan is that tomorrow (Sunday, June 1rst) Elysha will have another cardiac catheter to see if her shunt is still functioning correctly.  Once that status is determined, we will know what the next course of action will be.  There are several options, each depending on the status of the shunt flow. Elysha’s "regular" cardiac surgeon would like her to be off the ECMO asap as it is never a good thing to be on. No one knows what happened as Elysha was stable and in good health going in to the surgery.  This "even" does not seem to be related. Our feeling is that is would have happened anyway.  If we would not have been in the hospital, Elysha would not have survived. The Lord certainly orchestrated this as the surgery was supposed to be last Friday...and we did not get "bumped" even though most surgeries this week were cancelled.  Thank you Lord!
 
We have been given a room at the hospital as we need to be close by for now.  Elysha has been giving signs that she is functionally okay (breathing above the ventilator, moving her arm) and we’re hoping that she will begin to open her eyes soon.
 
Thank you for your continued prayers.  Internet connection is sporadic here so we will try to update as much as possible. 
 
HE IS ABLE!!!
 
MAY 26
We had a very enjoyable visit at Sick Kids on Friday for our presurgical appointment.  The admission plan has changed and we will now be heading in Thursday to begin a Heparin infusion in preparation for the surgery on Friday. This will hopefully prevent blood clots from forming on Friday when Elysha is off her Enoxaparin (which is what happened with the cardiac catheter).  Although we don’t want to be in hospital any longer than necessary, we are thankful that we won’t now need to get up at 4am to get in to the city in time for her appointmen! The earlier admission also lessens the chance the surgery will be postponed since inpatients get priority. Thank you Lord!
Surgery time is 9am.
Another item for praise is that we did receive coverage for the new formula and after a week on it, Elysha is doing amazing!  We hope to see weight gain at our next appointment. The vomitting has stopped and the fluid retention has gone down.
Thanks be to God!
 
 
MAY 14
 
We received word a few days ago that Elysha’s illiostomy reversal will be on May 30th.  We will go in a week before on the 23rd for a presurgery appointment.  There is a higher than normal possibility that the surgery will be rescheduled as that is the week the surgeon is on call - if an emergency case comes in, that will take priority.  It is our strong desire that the surgery not be postponed so please pray that it will go ahead as scheduled but also for a grace filled attitude and accepting spirit if it is rescheduled.
 
We were at Sick Kids most of the day today for a cardiology appointment. While we did not get an exact date for the heart surgery, we did learn more about the surgery itself.  The surgical team will be attempting the full repair of the heart, rather than leaving Elysha with a single ventricle, which was the other option.  The full repair it technically more challenging and riskier, however it will give Elysha far better oxygenation.  We are thankful that this operation is possible.  For those interested in the technical side, we will include details of the surgery on this site at a later date.
 
Elysha has been having more frequent and forceful vomitting episodes which we had thought was due to her oxygen levels dropping (what had happened last time just before her last surgery) but her sats today were at 85!  Wonderful news!  We met with a cardiac dietician who prescribed a special predigested formula to prevent the vomitting and increase her weight.  While Elysha has been gaining, she has not gained enough and therefore has fallen off the "growth curve" .  As a result, she is now in the 3rd percentile for height and weight.  The issue with the formula is that it is VERY expensive; our dietician had thought we would be covered for it but we were unsuccessful in getting the prescription filled. We are now in touch with the dietician and our case manager at CCAC to see if we can be covered.  Please pray that we will be - we have been blessed so far with coverage for Elysha’s other supplies (most of them).   
 
Another issue is Elysha’s eyes-her lower eyelids have always been turned under, meaning her eyelashes are rubbing directly on her eyeballs, and her eyeballs are touching her cheeks.  This was something that was thought she would outgrow but so far nothing has changed.  Our cardiac nurse has not seen this before so she kindly made a call to the opthamology department on our behalf for advice.  We hope to hear back soon to see if something can be done for her.  It is obviously uncomfortable as it also results in a lot of mucus "gumming up" her eyes.
 
And yet Elysha continues to smile and laugh through all this.  We do love our precious little girl and are so thankful for the time we have had with her so far.  Six and a half months! 
 
We are not scheduled to see the cardiac side until the end of June (presurgery clinic) but we will be  posting updates regarding the illiostomy reversal.  Thank you for your prayers!
 
 
APRIL 28
 
The Lord answered our prayers specifically - thank you for joining with us!
 
Elysha responded to the blood thinners and her ’heparin’ levels came back positive after two extra days at Sick Kids.  Her oxygen levels eventually stabilized very well and we were able to come home on Saturday late afternoon.  Please join us in thanking the Lord for answered prayers once again!
 
 

APRIL 24

 

After an early start to the day, Elysha is now in the Cath. Recovery room at Sick Kids.  The Cardiac Catheter was completed successfully this morning and the results were that her internal heart pressures are compatible with a ’single ventricle’ repair,  should that surgical path be determined to be necessary over the preferred ’double (bi) ventricle’ repair).  One possible complication of the "Cath" was blood clotting and it seems that Elysha has developed one in her right leg again.  This means that instead of being discharged tonight we will need to stay overnight as they do a blood thinning infusion by IV.  We’ll update you as details come.

 

Thanks for your care & prayer!

 

APRIL 17
Elysha’s sedated echocardiogram went very well today.  They were able to give the sedative via the NG tube which is a blessing given the very bitter taste...it is difficult to get the children to take it. It took effect very quickly with little fussing.  Elysha was very good up til then despite having no food for several hours. She was woken up afterwards and began smiling and laughing but still groggy.  We do need to keep an eye on her for 48 hours but so far she looks great.

Two doctors came to take additional pictures after the technician was done.  The one comment was "Wow-she has a complex heart".  One of the doctors who saw to her in the Critical Care Unit stopped by and could not believe how well Elysha looked - especially how much weight she had gained. It is good to hear that from the medical side especially from someone who knows her from when she was first hospitilized. Her sats were in the low to mid 80’s which is just where they should be!

We will not know results until after the cardiac catheter is done.

Regarding the illiostomy reversal, we were given a date of May 23...however I reminded them that Cardiology wanted the reversal done before her heart surgery which is supposed to be done in May.  So once again we are left hanging...but the Lord knows what is best and has already arranged the right date for her according to HIS purposes.

Our next appointment is Wednesday, April 23 to prepare for her cardiac catheter on the 24th.

 

APRIL 9

We received word today that Elysha’s loopagram showed her colon is free and clear meaning the simple reversal can be done.  Praise the Lord!!!

The Gen Surg team is trying to work out having the surgery on April 24th - the same day as her cardiac catheter- as Elysha will already be under general anasthetic for that procedure.  We are really hoping this can be arranged although ultimately we know that the day and hour are already arranged by the One who hold Elysha in His hands!

We are moving this Saturday (April 12) so we will be out of contact for the next few days but will update on the 17th after the sedate echocardiogram is completed.

Thank you to all who pray faithfully for us.

 

MARCH 31
It was the shortest appointment ever!  In and out in 1 1/2 hours.  The loopagram went very well and although we do not have results yet, we are assuming there is little scar tissue or strictures in the colon below the stoma as the technician had no difficulty getting through.  But we will wait for the surgeon to contact us before we celebrate.

We received noticed that Elysha is to also have a cardiac catheter on April 24th.  We were already booked for a follow up appointment on the 23rd with the cardiologist to discuss her sedated echo (on the 17th) but now we will be at the hospital all day on the 23rd for tests prior to the catheter as it is an invasive procedure requiring a lot of preparation.  We may end up staying the night until the 25th as general anasthetic is required.

 

We will update as soon as we have a surgical date for the illiostomy reversal.

 

MARCH 18
After a short respite, we have had to reinsert the feeding tube.  Elysha did not gain sufficient weight to warrant it being left out.  So far she has tolerated it being back in.

On a positive note, she did grow in terms of length so a few pairs of her pants on now too short (0-3 month size)!

 

We have put up our latest family picture-it will be the last "tube free" one for a while!

 

MARCH 13, 2007

 

A busy few weeks have gone by!  In the space of ten days we sold our condo and bought a new home!  The Lord has worked out the timing beautifully as always -  we have two weeks to move out of our condo and will be settled before Elysha’s next surgery.  We had spent a few days packing prior to putting the condo up for sale to have it “show ready” so there is little to do prior to the actual move.

 

Elysha is laughing and becoming for physically active now.  The reason for this is that we have managed to “wean” her off the NG tube!!!  She is able to drink all the time now from a bottle and is getting feeling and looking so much better. This also means that she no longer takes her stomach medication as they were given via the tube.  We are sure that the meds and tube were needed for a time but she is so much happier now and able to go on her tummy for “tummy time” !

 

Some dates to keep in mind –

March 31st  – Loopagram  (gen surg) to determine if the colon is free of strictures.  If that is the case, a “simple” reversal is all that is needed. If there are strictures, she will require a major abdominal operation requiring her previous incision to be opened.  PLEASE pray this will not be necessary. They are planning on doing this surgery prior to the heart one.

 

April 17th – Sedated Echocardiogram

April 23rd – follow up presurgical appointment with Cardiologist

 

Thank you for your prayers and interest.  Pictures will follow soon!  We will be on our way soon to pick up Grandma and Grandpa Brooks from the airport who have never seen Elysha in person yet!!

 

FEBRUARY 20, 2008

We don’t have to go back to the cardiac clinic for two whole months!!!! Elysha is doing very well at the moment so unless she begins to trend downward in terms of weight and appearance (e.g. looking more ’blue’) we won’t be going in until the end of April.

The next step for her on the cardiac side of things is to go back in April for a sedated echocardiogram and a cardiac catheter which will map out her heart in detail for the surgeons. We will have a better idea at that point when her surgery will take place. This is much better than what we were told earlier - no last minute surgery! (Unless her health derteriorates like last time).

We are so thankful for how the Lord has worked out things for us; yesterday was no exception. We had not yet heard from General Surgery (Gen Surg) when our follow up appointment would be so we decided to pop upstairs and speak to them directly while we were there. The Lord opened the door for us to be seen by our great surgeon with minimal wait that very day. And we received more great news there too!

The Doctor was very pleased with her recovery and the plan now is we will go back either end of next week or the following week for a presurgical exam of her colon below the ostomy (to see if any strictures have formed). Then within two weeks of that, Elysha will undergo surgery to have her illiostomy reversed.

We’ll keep you posted with appointment times. Thanks for your prayers!
HE IS ABLE!!!!!

 

FEBRUARY 19, 2008

No news is good news!  Elysha is a joy to have at home.  We are enjoying listening to her babbling as she recently found her voice!

Weight gain is an issue right now. Despite increased volume she is not putting on the weight that she should.  Her length is increasing, though, which is a good sign.

Tomorrow (Wednesday) we go to Sick Kids for a regular check up with the cardiologist. We hope to get some advice regarding her feeding; there are options for increased calorie formula that can be added without increasing the volume.

Thank you for your continued interest - enjoy the new pictures!

 

FEBRUARY 2, 2008

It’s been too long since we did an update, but we have been encouraged to ’enjoy Elysha’ everyday and we’ve been delighted to do that. :)

It is SO good to be home and although we are kept very busy with pumping, feeding (bottle & ng-tube), giving medications (incl. by needle), wound & illiostomy care, home nurse visits (twice a week) and all the other ’normal’ baby care tasks...  Katherine certainly takes the brunt of the work since Richard has return to full time this past week, but the old line "sleep while she’s sleeping" really works (when possible).

Tuesday was a trip to Sick Kids for a heart and dietician follow-up.  The results were all good.  Her oxygen is good, she’s gaining weight, her colour is good...and the medical staff were happy to let us go home again!  The overnight bags that Katherine had packed got to stay in the van.  :)

Wednesday was a follow-up with our local paediatrician.  Again, things are progressing in the right direction.  He again insisted that we don’t take Elysha to public places nor near children since even the slightest cold will land her right back in CCU...so we will make adjustments for that again.  In light of our alternatives (i.e. being in the hospital 24/7) having to ’stay at home’ isn’t really so bad...we have MUCH to be thankful for.

Elysha continues to struggle with her feeding (esp. after feeds) and has spit-ups and crying sessions almost every time.  These things will continue to be monitored and thankfully we have a number of excellent resources avaible to us as needed.

Thank you all, again, for the phone calls, emails, notes and drop-ins.

 

JANUARY 25, 2008

The three of us are heading home!!!!!!!  Details to follow...

 

JANUARY 23, 2008

At one point today, we thought that we would be announcing our return home tomorrow!  However, Gen Surg would like us to stay a bit longer to monitor Elysha’s illiostomy output; we are expecting to be evaluated tomorrow and possible head home Friday. 

Feeding is becoming more challenging as Elysha will only take a few millilitres from the bottle before having stomach issues so we are mainly using the ng tube (not an uncommon problem for cardiac kids).

One very big step forward was getting off the morphine completely yesterday.  It was wonderful to walk around with no tubes attached to Elysha.  She has had a bit of a rough time but is looking far more alert and is smiling a lot more now. 

In preparation for our discharge we are beginning the process of taking over more of her care (administering meds, changing dressings, inserting the ng tube) so we will be prepared for when the time comes.  Once discharged we will need to have weekly visits with one doctor or another until her next surgery.  We are hopeful that the next surgery will be at least three  months from now; it will most likely occur as her first one did...admission directly from outpatient clinic as opposed to a scheduled surgery.

 

JANUARY 19, 2008

We are no longer in isolation as the lab tests were negative for any virus’!  Thank you Lord.  All three of us slept through the night for the second time!  AMAZING!  It seems that the current ’protocol’ is working for Elysha, so we will continue this path for the time being. 

General surgery has asked that we measure her stoma output and they will compare it to her intake over a 24 hour period.  If her output is more than 50% of her intake then they will take further action.

Last night Elysha took 21 ml from the bottle and then was topped off via the ’ng-tube’.  This is the most she has taken by mouth yet and is an encouraging sign.

We will try update the photo’s on the website today sometime.

 

JANUARY 18, 2008


From a cardiac perspective, Elysha is doing amazing! An echocardiogram showed that her shunt is performing perfectly.

Elysha has been given a break from her morphine wean as she was having difficulty with withdrawal. We are hoping that the Clonidine, which helps with withdrawal, will kick in soon and relieve the symptons.

Another issue right now is that Elysha is producing copious amounts of fluid out of her stoma. As a precaution, anyone coming in to the room has to gown and glove and visitors are not recommended. She is being tested for a number of things including c. diff.

We did have a good day yesterday before the measures were put in place. Elysha is off her constant monitoring so we were able to go for a "walk" around the hospital pulling the iv pole along with us. She was very alert while we were on our trip which was very encouraging.

We have now been at Sick Kids for a month. We are thankful that we can stay with Elysha-although it is difficult to get any sleep! A few more interruptions during the night than if we were at home.

Thank you for your continued prayers and messages. They are very encouraging especially now as we are "confined to quarters" :)

 

JANUARY 13, 2008

Elysha was up to 15 ml every 3 hours on her feeds by Saturday evening but she was having increasing trouble swallowing at times (choking and gagging) and also seemed to have a lot of pain in her stomach once the breat milk got there (arching her back and crying - something she used to do while we were home too).

In an effort to ’trouble-shoot’ her feeding issues an "ng-tube" (nasal gastric) was inserted and all feeding is being done via the tube.  She was reduced to 10 ml every 3 hours to see if it was an ’amount’ problem. This by-passes the swallowing issues and will allow the dietitians to annalyze her digestive issues.  Once this situation is sorted out then an ’occupational therapist’ will address the swallowing problems (as our nurse said, "babies only occupations are feeding, pooping and sleeping").

We continue with the "baby steps" and although it is taking longer than we had hoped, we are SO thankful the be in a place that has so many skilled medical personel that can look after her many ’issues’.

Thank you all for continuing to praying with us.

 

JANUARY 11, 2008

Elysha is doing well today!  No temperature, no high heart rates...

Feeding by mouth was started yesterday and she is up to 3 ml per. hour now.  By 6 PM tonight her feeds will be increased to 9 ml every 3 hours.

The morphine is being weaned 10% every 48 hours and so far she is responding well.

We are in a private room and can stay with her now so that makes life much easier (and means less travelling everyday).  Richard went to work yesterday and continues to work remotely today.

Lots of smiles and good sleeps by Elysha.  More sleep needed by mom & dad.  But we are so thankful.  Thank you for your prayer and care!

 

JANUARY 9, 2008

Well it has been a busy couple days since the last update.  It is hard to know where to start, but here goes...

In our last update we said, "with what the Lord has brought us through so far, we do feel more prepared for what is to come"...well that was put to the test on Monday (Jan 7th).

Elysha was cleared to start feeding (1 cc / hour) and her triple antibiotics were stopped. She was transferred out of CCU up to the fourth floor (4D) step-down unit as planned at around 2:30 PM.  All was well and Elysha was sleeping.  Then at around 6:30 PM she suddenly woke up, started screaming (loud crying) and in about 5 minutes turned blue in her face and her skin became mottled all signs of a serious cardiac ’episode’.  Her heart rate went over 200 beats per. minute and her oxygen levels plummeted (although they had been creeping higher a few minutes before).  The medical team was pulled together to stabilize her and after a shot of (anti-anxiety medication) she started to calm down.  A 12 lead ECG was done (twice) and blood work was taken for analysis (central & peripheral).  Her temperature was 39 C so it was considered a major factor in the high heart rate (it had been 37 C an hour before - kids change SO fast!).  After about an hour her pink skin colour returned which was a huge relief since she hadn’t ever looked that bad (even before her surgery). 

One of her two central I/V lines in her neck got blocked so they had to install another I/V in her left foot (no un-pierced limbs left).  Her antibiotics were started and her feeds were stopped (she got around 5 in that day).  Overnight her belly incision was oozing quite badly so it was ’swabbed’ and sent off to the lab for testing. At around midnight she settled down to sleep and was good for the rest of the night.  We were given a room on the 4th floor for the night which we were very thankful for.

The next day (Tuesday 8th) another ECG and two more abdominal X-Rays where done along with other blood work.  The final analysis was that the cardiac episode was infection related. Elysha continued NPO (no food by mouth) and on antibiotics.  One of the central I/V lines in her neck tested positive for bacteria so one of her three antibiotics was switched to a more powerful one.

Today they are doing another surgical procedure to put a ’pick-line’ into her left arm.  This is a line that travels up a vein in her arm and ends just above the inlet to her heart.  The line allows for longer lasting, safer access for drugs that are needed to be quickly and completely diffused into her blood stream and will mean that the troublesome and infected lines in her neck can be removed.  We are currently waiting for this procedure to be completed.

A abdominal ultrasound is scheduled for later today to assess whether she has any abscess under the incision, and it not then she might be able to start on feeds again.

Thanks for all your continued prayers and support.  Richard has delayed his return to work due the latest developments, but hopefully for not too much longer.

**** UPDATE****

The ’pick-line’ insertion went well.  It took them a while to complete since she has small veins, but she managed well.  The ultrasound of her abdominals also was completed and intial thoughts are that the infection is only skin deep.  The ’stoma’ nurse came by to give us lesson’s on changing her illiostomy bag (every 2-3 days).  The process is complicated by the belly infection, but once that is under control it should be easier.

A busy day - but we are thankful for the Lord’s peace and felt presence with us at this time.

We were reminded yesterday of a song that we all sang at the end of our wedding reception just over a year ago:

All the Way My Savior Leads Me

~ Frances J. Crosby

  1. All the way my Savior leads me,
    What have I to ask beside?
    Can I doubt His tender mercy,
    Who through life has been my Guide?
    Heav’nly peace, divinest comfort,
    Here by faith in Him to dwell!
    For I know, whate’er befall me,
    Jesus doeth all things well;
    For I know, whate’er befall me,
    Jesus doeth all things well.
  2. All the way my Savior leads me,
    Cheers each winding path I tread,
    Gives me grace for every trial,
    Feeds me with the living Bread.
    Though my weary steps may falter
    And my soul athirst may be,
    Gushing from the Rock before me,
    Lo! A spring of joy I see;
    Gushing from the Rock before me,
    Lo! A spring of joy I see.
  3. All the way my Savior leads me,
    Oh, the fullness of His love!
    Perfect rest to me is promised
    In my Father’s house above.
    When my spirit, clothed immortal,
    Wings its flight to realms of day
    This my song through endless ages:
    Jesus led me all the way;
    This my song through endless ages:
    Jesus led me all the way.

JANUARY 6, 2008

Well today is our one year wedding anniversary, and quite a year it’s been!  We certianly thank the Lord for bringing us through so much and for girding us up with His everylasting arms of grace and mercy. 

Yesterday was a ’waiting’ day and yet Elysha did have a pretty good day.  Elysha’s oxygen levels were so good that she only needed a few hours in "The Box"  (see picture) which is a transitional device from ventilation to "solo" breathing.  She was also moved to a crib which was very exciting. A dear friend bought Elysha a wonderful crib mobile that we were able to attach to the crib  which she just loves!  Katherine got to hold Elysha for the first time in two and a half weeks!  What a special moment for mother and child - Dad took pictures (see updated photo’s).  Elysha fell asleep almost right away. She had a very good night (first one in a while!) and didn’t need any sedation drugs!  Praise the Lord! 

The atrial line (i.v.in her arm which had multiple lines for drawing blood) became blocked but since she is doing so well at this point the nurse decided to remove it so Elysha now has two free arms!  She was happily "exploring" her hands and has now resumed her favourite sleeping position - both arms up by her head. :)

Today Elysha was assessed by the medical team and a couple ultrasounds and an echocardiogram were conducted to check for fluid around her heart and for blood clots around the ’central line’ in her neck.  Both tests were negative and things look good. 

We were able to bathe her this afternoon and then she was dressed in a hospital gown (first clothes in a couple weeks!).  Both Mom & Dad were able to hold her too!

Elysha is doing very well and although she hasn’t had food by mouth for over 16 days she looks remarkably good.  All indications are that she will be able to move ’upstairs’ to the fourth floor on Monday (tomorrow), but that will depend on beds and staffing availability.  We’re just glad that medically she is ’good to go’!  Tonight seemed to be a "reunion" of Elysha’s nurses that she has had over the last three weeks as all of them in the room have had Elysha as their patient.  One nurse did not even recognize her as Elysha looked so good compared to what she did she first came to the Critical Care Unit.

We are so thankful for the amazing care we have all received - we can’t say enough about the staff.  With what the Lord has brought us through so far, we do feel more prepared for what is to come, realizing that this was just the beginning.

(Updates may not be as frequent as the wireless internet connection is not working at Sick Kids right now)

 

JANUARY 4, 2008

Yesterday at 2:22 PM Elysha had her breathing tube removed!!  Praise the Lord!  She was able to breath on her own and although her voice is not back (the tube passes through the vocal cords and it takes sometime for them to heal) she did make lots of cute little noises.  Funny how even hearing her cry in pain was a comfort to us since we hadn’t heard anything from her in over two weeks.

Today at around 2 PM the medical team removed her heart drain.  This had been used to drain fluid from around her heart, but isn’t needed at this point since it had ’dried up’.

Although Elysha did get weaned to 35 of morphine she was back up to 40 today since she started to go through withdrawls quite badly.  The weaning will now be slower and will likely take two weeks to complete along with other supplimentary and transitional pain medications.

The current plan is to keep her stabalized and comfortable till Monday when the anti-biotics are scheduled to be completed and they reassess her ability to take food by mouth again.  We do hope that it can start then.

We continue to thank the Lord Jesus for peace for us and healing for Elysha and we look forward to being able to interact with her a little more when she isn’t so sedated.

 

 

JANUARY 3, 2008

Yesterday was a long day (at least it seemed it for us).  Elysha was ’out of it’ most of the day and only opened her eyes when she had little ’panic attacks’ (eyes wide open and arms flung up and rapid breathing) before settling down to sleep again.  The medical team postponed the removal of the breathing tube till today since she really wasn’t settling well and her breathing was too shallow and fast.  Her morphine was dropped for a while, but was put back up to try to manage her abdominal discomfort.

Overnight the nurses started weaning her off the morphine again (60-40-35) and as such Elysha was very alert this morning when we arrived.  She was looking around and enjoying her soother again - whittled down to fit underneath the breathing tube.  The nurses have been asking where we bought it since it’s the perfect size - Richard may start a business on the side; actually two since one of the other parents saw the drawing he did of Elysha’s heart and asked if he would draw one of his son’s. 

Our first nurse from when Elysha was born is back with her today, which we were delighted about since she just fell in love with Elysha from the first...a special connection made between care giver and child and much appreciated by parents too! 

The plan today is to try extubate her and then set her up in a ’breathing canopy’ which provide moist warm air for her since she will have a sore throat after the tube is removed. If all goes well, we may be out of critical care by Monday and in our own room on the fourth floor.  But we will just take each day as it comes.

We will hopefully have further good news later this afternoon!

 

JANUARY 1, 2008

We rang in the new year as a family - watching the fire works at Nathan Phillips Square from the window of Elysha’s hospital room.   It was a quiet night and Elysha appears to be doing well. We also enjoyed a visit from Auntie Rachel and friends.

The doctors would like to attempt to extubate Elysha tonight (remove the ventilation tube) as she is breathing mostly on her own now and still remaining stable in terms of blood gases and other levels that they are constantly monitoring. Please pray that she will tolerate the procedure and that they will not have to reintubate (put the tube back down her throat). This is a very painful but necessary procedure.  We cannot be with her during this time so please pray also that she will not be too frightened or feel abandoned! 

As Elysha is waking up more and more, her pain and discomfort is becoming more evident.  While it is a relief to see emotion registering on her face, it is hard to see that she is trying to cry in pain but can’t make a sound because she is still on the ventilator.

The more families we meet here in the Critical Care Unit in various stages of distress, the more we wonder at how people handle difficult times without the Lord.  HE truly is our peace - even at those times when all you want to do is break down and cry (and I have at times).

One note of correction: she had an illiostomy not colostomy.  Same procedure but different part of the bowel.  Thanks Grandma.

 

DECEMBER 30, 2007 - PM

Praise the Lord – Elysha’s surgery was successful!  The surgeons found 2 holes in her colon which were repaired.  The rest of her bowel was in remarkably good condition considering seven days without food.   She has been given a colostomy (her bowel empties into a bag outside her body) which will allow the repaired area to heal and to give it a rest as well.  The colostomy will be reversed in a few months; at this point they do not know if it will be before or after the next surgery. 

We hope that now that this issue has been resolved we will see an improvement in Elysha’s overall condition, particularly her elevated heart rate and blood pressure. 

During our wait we had visits from three dear friends from our church; the Body of Christ is truly beautiful.  It was such an encouragement to be held up in prayer in person during this time.

Parents and Canadian grandparents are anxiously awaiting the all clear to go in and see her! She will be sedated for some time but we pray that she’ll come off the ventilator successfully in the next few days.

 

DECEMBER 30, 2007 - AM

We received a call from the hospital at 6:15 am saying that Elysha’s feeding had been stopped and that the general surgeons were looking at x-rays which showed air was present in her abdomen.   Upon arriving at Sick Kids the surgeons informed us they wanted to do exploratory surgery.  We do hope they find something so that the problem can be fixed as these abdominal issues have been hampering Elysha’s recovery.  Elysha is currently being prepped for surgery; we anticipate the procedure to be over by this afternoon and will update again when we know the outcome.

Thank for your continued prayers.

 

DECEMBER 29, 2007

Today, Elysha turned a corner, we hope it is ’the’ corner, but either way, we were delighted with her progress. 

The medical team were able to start the process of weaning Elysha off the morphine.  They took her from 60 to 40 and then finally 30 units, the next reductions will be much smaller and over an extended period of time.  Today’s changes in morphine also allowed them to start weaning her off the ventilator.  The only issues she’s had so far are some rapid respirations (perhaps bad habits from before the surgery) and also some increased secretions in her breathing tube (the Dr’s will look into that further).

Elysha was also started on mother’s milk again for the first time in over a week!  She is currently being fed by an ’ng tube’ (a feeding tube through the nose and into the stomach) at a rate of 2 mL / hour.  She was with some ’help’ able to have her first bowel movement this evening too!   

Before we left tonight we were blessed to have a moment with Elysha where she was the most alert we’d seen her in a week with eyes wide open (a little glazed perhaps, but open non-the-less)!  She fell asleep clutching daddy’s little finger.  Thank you Lord for the progress made today!

 

DECEMBER 28, 2007

Elysha had a good night, but after another eco-cardiogram in the morning more fluid was found around her heart which meant going in again.  It was hard for us to think about her incision being opened a third time in one week...but the medical team wasn’t exactly excited at the prospect of doing it again either, so this time they installed a tube to continuously drain the fluid out from around her heart.  The proceedure was completed successfully this afternoon and Elysha was quick to ’bounce back’ and was already ’waking up’ when we visited with her an hour later.

The general surgeons feel that the ’nec’ is gone and so anti-biotics were stopped today!  Tomorrow Elysha should be able to start the long process of being fed by mouth.  It will be a long process because she’s been without anything by mouth for seven days and will need to be started with very small amounts over long periods of time (i.e. 1 mL or cc per 12 hrs). 

The team also hopes to begin weaning her off the ventilator again.  We look forward to these positive changes, whilst knowing that it might still take a while.

We were encouraged to see that talking and singing with her tonight resulted in her blood pressure stabilizing.  Thank you Lord Jesus for this precious gift!

 

DECEMBER 27, 2007

Elysha is exactly 2 months old today!  It seems like yesterday and at the same time 2 years ago that we held her for the first time! :)

The good news for today was that the "nec" seems to be being held at bay.  The surgical team covering that aspect of her treatment is pleased with what they saw on the last x-ray and ultrasound.  A full assesment will be conducted by the team tomorrow morning to see whether they should continue the anti-biotics and ’NPO’ beyond the normal seven day treatment.

As we arrived at the hospital this morning, we received a call on our cell phone from one of the cardiac surgeons saying he needed to talk with us about our baby and when we indicated that we were on the main floor he asked that we meet him in the Cardiac Critical Care Unit as soon as possible.  We were so thankful that we were so close already, or it would have been a very stressful drive in!

Elysha had developed fluid around her heart and after some testing her primary surgeon directed that it had to be suctioned. This required reopening a small portion of her previous chest incision and inserting a catheter to extract the fluid.  The medical team still is not sure where the fluid is coming from or why this happened.  In preparation for the surgery Elysha was returned to full ventilation and was totally sedated and this was continued throughout the day.  The doctors do feel that her pain is being managed effectively and we are thankful for that.  

Elysha’s heart rate and blood pressure continue to be elevated so an echocardiogram will be done tonight or first thing in the morning. 

It has now been a week since her surgery and a week since we last held our precious little girl.  Because she is so "reactive" (blood pressure/heart rate increasing) we are not even touching her hands as any contact causes the rates to go up.  Even small doses of the I/V drugs used before are causing extreme fluxuations in her heart rates and blood pressures.

Before we left tonight the nurse on night duty was talking to us about ’non-medicinal’ methods of controlling high pulse and blood pressures and Katherine mentioned that Elysha had had a bag of ice at her head before the surgery that had worked to decrease her heart rates then.  So...the nurse decided to give it a try and ’voila’ Elysha’s heart rate and pressures started to come back down.  "Go Dr. Mom!" :)

We continue to be thankful for the amazing staff that we have been blessed with. 

 

DECEMBER 25, 2007

Elysha is still in the Critical Care Unit, but is continuing to respond well to the current "NEC" treatments.  She has had her muscle relaxants lifted, but some additional sedation added (her pain is being managed well).  We were delighted to see her eyes opened and actually tracking our faces for a few moments tonight.

When we arrived this morning we were moved at the generosity of folks at Sick Kids (and all who donate gifts to them)!  There was a little bag of toys and a photo of ’santa’ and an ’elf’ standing near her crib.  Someone went to a whole lot of effort to make parents and kids feel ’at home’ and the gifts were ALL age appropriate too! See the updated photo’s...

Sick Kids also provided a full turkey dinner (with all the trimmings) for all parents and staff.  We were both not feeling too hungry, but were able to share our meals with Grandpa and Grandma Smith (Sandy & Lorna).

This was a ’different’ Christmas to be sure, but we were delighted to ’be together as a family’!  Thank you Lord Jesus!

 

DECEMBER 22, 2007

Elysha came through her surgery safely and is still in the Critical Care Unit (CCU) at Sick Kids.  She is on a ventilator which is being used to try to ‘balance her system’ and although it is taking a little longer than expected, our surgeon did tell us, “it will take some time for Elysha’s system to adjust to her new physiology”. 

The surgical procedure (BT Shunt) is a temporary insertion of a gortex tube (~4mm diameter) between the aorta (artery from heart to body) and the pulmonary artery (from heart to lungs).  The main pulmonary outlet from the heart was ‘tied-off’ to prevent ‘back-flow’ into the heart.  So now the single aortic outlet from the heart supplies all the blood from the heart to the body and to the lungs (via the shunt).  Elysha’s pulmonary outlet was narrowing (stenosis) and had been restricting the blood flow to the lungs.  This surgery is intended to ‘buy time’ till the next more complex surgery (hoped to be when she is at least six month old).

One setback that is currently being addressed is that a part of her intestinal track has necrotized ("NEC" - basically ‘died’) from lack of oxygen supply.  When there is a shortage of ‘good blood’ the body redirects it to the major organs and as such the bowels ‘do without’.  The treatment involves antibiotics, muscle relaxants and NPO (no food by mouth).  Every 4-6 hrs an X-Ray is done to track her response to this treatment.  This morning’s report indicates that she seems to be responding well (surgery is a final option, but we pray that isn’t needed).

As we waited for news during Elysha’s surgery we read the following from “Daily Light” – a devotional that compiles verses on a single theme for each day of the year.

 

EVENING                      DECEMBER 19

        

He shall feed his flock like a shepherd: he shall gather the lambs with his arm, and carry them in his bosom, and shall gently lead those that are with young.

        

I have compassion on the multitude, because they continue with me now three days, and have nothing to eat: ... I will not send them away fasting, lest they faint in the way. — We have not an high priest which cannot be touched with the feeling of our infirmities.

        

They brought young children to him, and he took them up in his arms, put his hands upon them, and blessed them.

        

I have gone astray like a lost sheep; seek thy servant. — The Son of man is come to seek and to save that which was lost. — Ye were as sheep going astray; but are now returned unto the Shepherd and Bishop of your souls.

 

Fear not, little flock; for it is your Father’s good pleasure to give you the kingdom. — I will feed my flock, and I will cause them to lie down, saith the Lord GOD.

        

ISA. 40:11.  Matt. 15:32. -Heb. 4:15. Mark 10:13,16. Psa. 119:176. -Luke 19:10. -I Pet. 2:25. Luke 12:32. -Ezek. 34:15.

 

 

DECEMBER 20, 2007

On a routine bi-weekly appointment at Sick Kids it was determined that Elysha’s oxygen levels were too low to wait any longer.  She was admitted and is awaiting surgery today!  The time is uncertian (11-2 PM?).  We will update later today.  Thanks for all your prayers.

DECEMBER 5, 2007

Elysha continues to impress her medical team: weight is now 8lbs 5oz!  She did wonderfully during her ECG - although she threw the technician for a loop since she didn’t know Elysha was a "dextro".  The readings were off until she realized the problem and moved the leads to the right side!  Oxygen levels are the same as last time.

We do not have any more information at this point as the cardiologist did not make the case conference so Elysha’s surgical plan was not discussed.  We return in 2 weeks for another check and we were assured that the meeting will take place on Monday so we hope to have an idea then of what the plan will be.

On a postive note we were given the all clear to attend the Brooks family Christmas dinner (provided we take precautions) so we are very excited and thanking the Lord for that gift! 

We will continue to post pictures and will have another update on December 19th which is our next appointment at Sick Kids.

 

NOVEMBER 28, 2007

Elysha had her second "RSV" shot (antibodies) into her leg muscle.  She really did well, since apparently it is a very painful process.

Her weight was 3.6 kg (~8 lbs) and so she maintains her ’good growth’ for which we continue to thank the Lord.

We expectantly await the meeting with our cardiologist next Wednesday at Sick Kids.

We are thankful that Elysha is starting to sleep for longer periods of time during the night and still feeding regularly.

Thanks to Graham for updating the features of this site: Guest Book etc.  Feel free to leave your comments.

Thank you all for the prayers, emails, e-notes...etc.

 

NOVEMBER 21, 2007

We made the ’trek’ down to Sick Kids, downtown Toronto, and although the weather and traffic made it an extra long trip, we made it with 2 mins to spare.  :)

An ECG was done first.  Elysha was a trooper!  We’ll be adding new pictures soon including one of her hooked up to the monitor.

A consult with our cardiac nurse was next.  Elysha was weighed and measured:  she’s now 7 1/2 pounds and almost 19 inches long!  (Out of preemie diapers and into the newborn size.  Still in preemie clothes but not for much longer!) Elysha’s oxygen saturation levels (sat’s) were measured and were found to have dropped to the mid 70’s, although she did hit 80 at one point during the test.  It could have been an "off" day for her or this might be a trend.

We then met with our cardiologist.   The consensus right now is that the original surgical plan is too risky so alternatives are going to be discussed at a case conference next Monday.   Two of the options presented were to do a "simpler" operation that would stabalize her heart but not really repair it. The other option is a heart transplant.  However, he would not give favour to one or the other until after the meeting with the surgical and cardiology teams.

We are to go back in two weeks (December 5th) for another ECG and to see if the sats are continuing to drop. We will discuss surgical options at that appointment. It looks as if her first surgery might be in the next four to eight weeks instead of 6 months.

 

NOVEMBER 15, 2007

Just to update everyone on the pediatrician (or paediatrician) appointment today.

Elysha is now 6lbs 15oz (again well above ’minimal’ growth rates).  Our pediatrician said, "As far as I can tell viewing all her external signs she is a healthy girl.  Now we will have to see what the cardiologist has to say when he checks her internal signs (heart, valves, arteries etc.)".  The Sick Kids Echo-cardiogram is scheduled for next Wednesday, Nov. 21.

Our next ped’s appointment is November 28 (two weeks from now).

Richard’s sister Rachel visited us the other day and took a bunch of pictures of Elysha you can checkout her blog to see them: Elysha Pictures

 

NOVEMBER 14, 2007

We had a visit today from the Public Health Nurse.  She was astounded as the doctors were at how Elysha looks.  Her comment was that she didn’t know what to expect given Elysha’s condition, but certainly wasn’t expecting to see a healthy looking, pink, active baby!

A number of recommendations were made regarding Elysha’s development ("milestones") as there is some concern she will be on the slow side due to her lack of energy and lower oxygen levels.  But so far she’s right on target and even ahead in some areas.  The nurse would like her hearing and vision checked as soon as possible as it wasn’t done in the hospital (every other test under the sun was done expect all the ’normal’ tests), but there are no indications that she has any difficulties in those areas.

At the nurse’s suggestion we will be checking with our paediatrician as to what activity level we can expect Elysha to reach.  There is some concern about "Tummy Time" (placing the infant on her stomach to encourage neck muscle strength).  That may place too much pressure on her heart.  It may be a case of "try it and see" when we are at Sick Kids so they can monitor her oxygen levels.

Tomorrow will be our visit to the paediatrician so another update tomorrow.

 

 

NOVEMBER 7, 2007

Today (Wednesday) we had our 2nd appointment with our pediatrician.  Elysha has gained a pound!  Praise the Lord!  Weight gain is usually a problem for cardiac babies but Elysha’s progess has been ’excellent’ in the words of our pediatrician...’quite surprising’ he said.  She is now 6 lbs 6 oz’s.

She recieved the first of a series of monthly inter-musclular injections of RSV antibodies (Resperatory Virus).  The first month will require a double dose, so she’ll have the second in two weeks from today, but after that it will be a monthly ordeal for the duration of the ’flu season’ (November to April).  He indicated that she ’must not come in contact with children’ (due their exposure to flu/cold germs).  This will make for some interesting challenges ahead, but we still are just so thankful to have her home with us! :) 

The "Visit Us" page will be updated to reflect our home location.

Our next pediatrician appointment is on November 15th and the next Cardiologist appointment is on November 21st.

 

NOVEMBER 2, 2007

We’ve updated the photo page with some more ’cute’ pictures (yes, we are referring to Elysha!). 

From this point on we’ll continue to update this site only as medical appointments are had and details come in.  For day to day updates Katherine will use our blog - www.odetograce.blogspot.com

Your prayers, e-notes, visits, calls etc. are such an encouragement to us and as we are so thankful for each one who has connected with us.

On thing that we forgot to mention about our medical appointment yesterday was that the pediatrician said that Elysha needed to have an ’RSV’ antibodies injection.  What to most would just be a common cold, to cardiac babies can be deadly and we are entering flu season.   Please keep this in mind if considering a visit.

 

NOVEMBER 1, 2007

We went to visit Elysha’s pediatrician today.  He did a number of checks and had lots of questions.  We were encouraged that everything is going fine so far (a lot can happen in 5 days!). :)

Again Elysha ’wowed’ a medical person because she hadn’t lost weight from her recorded birth weight...in fact according to his scale she’d put on 0.2 lbs!  He was surprised...and we certainly trust that he’ll continue to be so.

One comment he made after listening to her heart was, "She’s got a whopper of a murmur!"  We’d always wondered what it sounded like to a trained ear, but hadn’t gotten an answer yet.  And so now we know...just for the record. :)

He had lots of helpful advice and asked to see us back in a week, so we go back next Wednesday at 2:30 PM.

 

OCTOBER 30, 2007

Elysha came home today!!

We were not at all expecting this announcement from our Cardiologist, but with both surprize and excitment we started our preparations and got home after supper tonight (Tuesday).  Simple things like an infant car seat and stroller, diapers, etc. were all included in things we hadn’t expected to need so soon, but these were quickly purchased in a trip to the Eaton’s Centre in the late afternoon.

We had stayed with Elysha in her private room over night (Monday) and we able to start taking care of her (3 hourly feeds...etc.).  It was wonderful having such helpful and supportive staff around to field any questions and provide necesary resources for us. 

The Cardiologist was happy with Elysha’s current stats (incl. oxygen) and indicated that the initial surgery (shunt) was not needed at this time!  WOW!  He reviewed that plan for the ’big’ heart surgery and indicated that he’d like to hold it off till Elysha is at least 6 months old and has gained some weight.  He indicated that he didn’t need to see us again till near the end of November (3-4 weeks).  Between now and then she’ll be monitored regularily and we have been setup with a Pediatrician in the Oakville area for weekly appointments.  There is also a local community nurse who will pay us visits on at least a weekly basis.

A note from Richard:

"I am SO greatful for Katherine and all she knows about looking after babies!  She know what to do, when to do it, where to find it...etc.  She also adapts, much better than I, to the 3 hour feeding schedule that Elysha demands."

We have once again received a precious gift from the Lord and have experienced the truth of the following verses...

"Now to Him who is able to do exceedingly abundantly above all that we ask or think, according to the power that works in us, to Him be glory in the church by Christ Jesus to all generations, forever and ever. Amen." ~ Ephesians 3:20,21

But, you might ask, what if things didn’t turn out this way?  What if things go ’wrong’ or get ’worse’?  Do these Bible verses become false?  Ah...no, but rather it causes us to excersise ’faith’, the same faith that penned the words, "I’ll praise Him for all that is past and trust Him for all that’s to come".  A real relationship with Jesus Christ results in ’praise to Him’ when prayers are answered and ’depending on Him’ when things aren’t as we’d hoped.  One leads to ’worship’ the other leads to more ’prayer’, and both are essential parts of experiencing God.  Blind? Oh no!... Real?  Oh yes! :)

OCTOBER 29, 2007

Elysha is now in her own room at Sick Kids (HSC)!  Way ahead of schedule!  Thank you Lord Jesus!

She is out of intensive care and is in a room by herself where we as parents can stay with her and do the day in/day out care whilst she is continuing to be monitored by a machine w/ monitor in the room. 

We’ll have a consut with Dr’s today to see what is planed for her from this point on.  We’ll update after that has happened.

Thanks for all the prayers and little e-notes! :)

 

OCTOBER 28, 2007

Elysha is "WOW’ing" her medical team...doing things she was never supposed to be able to do with her heart condition!!  Even things as simple as ’sucking a bottle’...   She was on the prostaglandin (to keep her ’duct open’), but they found it was causing her to have breathing problems (apnea)...but once they took her off the chemical she has been completely fine!

The nursing staff LOVE her and have been SO helpful to us and kind to Elysha, even carrying her around (since she has been so good and doesn’t need to be on the monitors all the time).

We got to hold and feed her today...check out the pictures! :)

We had a some visitors this afternoon and we appreciated them coming down all the way into Toronto downtown.

Katherine was released from Mt. Sinai this evening and was able to come home after a visit with Elysha.  Her blood pressure is still a little high, but ’rest’ is what is ordered.  :)

 

OCTOBER 27, 2007

Saturday morning 2 AM, Elysha Elizabeth Brooks was born a little over 5 lbs!  Mother is resting (much needed...what a trooper!) and Dad is about to follow Elysha to Sick Kids (transport tunnel).  We now embark on another new phase of our family’s life. 

Her oxygen levels were stable and the Dr’s kept commenting at how much she looked like her 3D photos (which we had ’proudly’ shown them earlier), they kept asking for them and holding them up to her.

Our AMAZING nurse got Katherine out of bed (not even an hour after giving birth ~ and still totally numb with the epidural) to go see Elysha in the Intensive Care Unit.  They took ’family’ photo’s of us with her! :)

We’ll update with more details and photo’s soon.

 

OCTOBER 26, 2007

Today, Friday, IS the day!! :)

Katherine has just been called into the Labour & Delivery to start the induction.  It may take a little while, but we’re glad that things are moving ahead.

The Lord is SO gracious and His timing is PERFECT.  We enjoyed some much needed time in private last evening (in between roommates) and we were able to pray, cry and read the Bible together.  We call on the Lord and were amazed at His peace...so with all the waiting, we have experienced, yet again, the truth found in Isaiah 40:31 "...those who wait on the LORD shall renew their strength; they shall mount up on wings like eagles, they shall run and not be weary, they shall walk and not faint."

Will update soon...thanks for praying and bearing with us.

 

OCTOBER 24, 2007

We are still waiting...  :)

Although Katherine was admitted to a maternity ward and given a bed, we were told that there was a waiting list for beds at Sick Kids where Elysha is to be tranferred after she’s born.  Each day was a ’possibility’ and as such we were to be ready for the call.  Tonight our nurse indicated that tomorrow should be our ’special day’ and that would go along with what most of the Dr’s have said till now..."2 to 3 day waits is normal" (funny how we forget those little details till after the fact).

Katherine’s blood pressure is up and down, but generally is better than it was, the ’forced’ rest has been good for her.

In the mean time, Richard was able to slip home and get some things we’d forgotten and also do an afternoon at work to ’tidy up’ and ’finish off’ a few outstanding items.

We’ve also enjoyed visits by Katherine’s parents (Sandy & Lorna).  Today they brought some much appreciated food and snack items.  Also Jake and Catherine who were visiting Sick Kids with their little boy.

OCTOBER 22, 2007

We are in Mount Sinai Hospital!  Dr. Ryan decided to induce labour so we are comfortably settled in for the night.  We will either be started tonight or first thing tomorrow morning.  We do have computer access in the hospital but it may be a few days before we update again.

We are still in a bit of shock as we did not really think it would be today!  But the Lord knows what is best - we trust Him for what lies ahead. 

Thanks for your prayers and encouragement!

 

OCTOBER 17, 2007

Elysha’s growth has slowed down.   She gained only 6 ounces since her last weigh in two weeks (normal is 1/2 pound to a pound a week) and her other measurements have not really changed.  She is now in the 10th percentile for wieight and height.  However, her movement has not diminished and she is still "practice breathing" .  We knew from the beginning her physical development would most likely be impaired by her heart defects so this is not unexpected. 

We will be going back to the hospital on Monday instead of in one week as Katherine’s blood pressure continues to climb.  We were very thankful we were able to come home yesterday and avoid early admission to hospital!  But now due to the eleveated BP, the baby’s slower growth, and other factors, there is now talk of a scheduled induction, possibly as early as the beginning of next week. 

 

OCTOBER 10, 2007

We were able to meet with one of the other doctors in the clinic that we may end up having at the delivery.  His approach is limited intervention - something we are hoping for.  There is one more doctor we haven’t met yet but so far the three we have met are wonderful and we are very confident in the care we are getting.  Interestingly enough, all three doctors so far are Irish!

Katherine’s blood pressure remains elevated, however, other tests were more positive so she was able to return home with orders for bed rest.  She was feeling the effects of being up and about for an extended period of time today but this also went to prove that it can be alleviated by resting.

We are now at the point of weekly hospital visits.  Elysha continues to be in good condition which will hopefully help her once she is born and the effects of her heart defects become apparent.

Our next appointment is Wednesday, October 17th.

 

OCTOBER 4, 2007

Elysha is just over 4 pounds.  She’s about 1 1/2 pounds below "normal" but still growing and active as ever. 

Katherine spent the afternoon at the Obstetrical Day Unit at the hospital under observation due to elevated blood pressure and other warning signs of Preeclampsia

She was sent home after five hours with orders to rest for a week.  The doctor will follow up at the next appointment - October 10th.

OCTOBER 3, 2007

We are SO thankful for our wonderful paediatric cardiologist, Dr. Bradley.  He was able to get a very clear picture of certain areas of the heart that were shadowed at earlier appointments.  From the beginning, there had been some unknowns about the Ductus Arteriosus that connects the Aorta and Pulmonary Artery in utero to bypass blood flow to the lungs.  For a picture of what this looks like, click HERE.  The diagram is actually of a condition called Patent Ductus Arteriorsus (where the duct does not close after birth) but is still an accurate depiction of what should happen before and after.

Dr. Bradley was able to determine at this appointment that the duct takes a convoluted path but was functioning adequately.  Because of this development, though, he is ordering the immediate administration of Prostaglandin Therapy (scroll down to bottom of page for explanation).