Brooks Updates

 

• Latest Update - Updated 12/16/2008
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Latest Update - Updated 12/16/2008

APRIL 24

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 31^st  – 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 17^th – Sedated Echocardiogram

April 23^rd – 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).