The good news is ...

... Josiah is as cute as ever!  His smiles are amazing.  His oxygen saturation levels are within the acceptable range and he is breathing well.  The antacid medication has seemed to help his feeding issues due to reflux.  He took his first bottle from his Grandma without any problems whatsoever.  We are so grateful to know that he is always in God's hands. 

However, his feet are purple.  This was his first sign of increased cyanosis.  We had a surprise visit to Grand River Hospital yesterday to check his saturation levels (Isaac was such a patient big brother in the hospital room) and today we went to McMaster Hospital.  During an echocardiogram this afternoon the doctor quickly found the problem.  Josiah now has severe leakage in his one main heart valve.  The doctor called the valve a "sprinkler."  This means that there is decreased cardiac output and thus his extremities are often more purple, especially when he's fussy.  He hasn't been too interested in feeding today so that is also a concern.  We've been asked to go to McMaster's ER if he becomes sleepier, feeds less and has drier diapers. 

Leakage in valves generally increases.  This could certainly affect when Josiah needs to have surgery.  He is now two and a half months old and usually surgeons don't want to do the BPCS surgery until four months of age.


Prayer Requests:

• That Josiah's saturation levels remain in his normal range and that his breathing continues unhindered.  
• That the leakage in his valve decreases
• That Josiah will be able to wait until he is at least four months old for surgery
• That Graham and Elizabeth will have wisdom to know when to go to the hospital
• That Josiah will learn to take a bottle (he hasn't taken one at home yet)
• That Josiah would feed (and sleep!) perfectly and have good urinary output

It's sort of surreal I guess - to hold this beautiful gift from God in my arms and try to believe that his condition is life threatening.  Although all of his heart issues are extremely serious, there are also successful surgery techniques to help correct them.  However, my understanding is that there are not great solutions for fixing valves yet.  If nothing changes, our next appointment is on the 10th of July at SickKids (kidney ultrasound) and then back to McMaster on the 12th of July and then his first sedate echocardiogram at SickKids on July 24th.

Hopefully we will not need to visit the hospital for Isaac.  He has decided that he should try to climb on everything he sees.  He has also realized that if he places those objects near desks and tables, he can reach things that Mommy and Daddy have placed "out of reach."  He keeps us laughing and on our toes!

Thank you so much for your prayers and support!  We serve a good God who loves us and gives us His peace and joy. 

Blessings,

Elizabeth and Graham
    

Reflux

Josiah has reflux.  We had a surprise visit to SickKids yesterday where this was confirmed.  He is now on antacid medications which have already helped.  He slept better last night, fed better today and was clearly in less pain.  We'll hold off on the bottle feeding for a little longer (though I received some great advice in the nursery on Sunday about which bottle to try so I'm looking forward to breakthrough!).  Isaac is also now sleeping past 6:30 so there is joy in the house! 

Blessings,

Elizabeth and Graham   

2 Months Old!

Josiah turned two months old on Wednesday!  He also received his immunizations the same day and thankfully he did not react to them.  At his visit to McMaster on Tuesday his weight was recorded as 12 pounds and his cardiologist was very pleased with how he's doing.  The doctor's main concern is the leakage in Josiah's primary heart valve.  We won't know if the leakage has increased until his next echocardiogram near the end of July.  He said it's possible that the BPCS surgery (explained in a previous post) would reduce the load on the heart and that the leakage would decrease without needing to do anything to the valve.

Isaac also had an important day this week - he is now a year and a half.  He certainly makes us laugh but he also keeps us on our toes as he tests the limits.  Does disciplining your child get easier over time?!

The attempts at bottle feeding haven't gone well yet.  The main advantage to being able to bottle feed is that the doctors could easily increase his caloric intake in hospital if necessary after surgery.  Of course, if he didn't need surgery until he could use a sippy cup, that would work too (this would involve one or two miracles!)

Josiah has had very fussy feeds of late.  We'll talk to the paediatrician about this on Monday.  We're having him sleep on a slight incline and that has improved the nights to some degree though he's still on Elizabeth a lot.

It was nice to visit Listowel Pentecostal Church a couple of weeks ago (where Graham's parents attend).  We appreciate all the people there praying for our family.

Apart from visits to the paediatrician, Josiah's next heart visit is at McMaster on July 12th so there may not be much news until then as we're praying that all continues to go well.

Prayer Requests:

• That the leakage in Josiah's heart valve would stop
• Wisdom as we discipline
• That Josiah would learn to take a bottle and that he would feed well
• That Josiah would consistently sleep in his crib

Thanks for your prayers and support!  We are blessed beyond measure.  God is good.  We are thankful for the last eight years of marriage that we celebrated on June 12th.  Where does the time go?

Blessings,

Elizabeth and Graham


P.S. We're looking forward to Josiah's dedication to the Lord on July 15th.  All of his grandparents, aunts, uncles and cousins will be there, including those from Ottawa and British Columbia!!!

P.P.S. In honour of our anniversary last week, we thought you might enjoy this song by JJ Heller. 

No Appointments!

Last week was our first week without any appointments and Josiah was in fine form!  It was also our first week being completely solo in our house overnight (just the four of us).  Isaac has still enjoyed lots of fun trips with his grandparents during the day (apparently he's a fan of Home Depot).

Josiah is an excellent eater and for that we're so thankful.  He's certainly not having trouble gaining weight.  We visited the paediatrician this morning and Josiah weighed 11 pounds 12 ounces.  Last week we made our first attempt at introducing a bottle to Josiah.  He was not impressed.  It is important that he learns to drink from a bottle so that if/when he has surgery, he is able to be fed from a bottle while recuperating. 

We were recently blessed with the gift of a double stroller.  Both boys enjoyed their first joint stroller ride to the library.  Josiah's favourite place to be is snuggled up in a wrap on his mommy.  The stretchy wrap has not failed to soothe him when he's fussy - another great Kijiji find!  Josiah was giving out some smiles today which was a nice change from his cries - he seems to get a lot of gas. 

That sums up our news.  Our next appointment is scheduled for next Tuesday at McMaster. 

A few prayer requests:

• That Josiah remains balanced.
• That Josiah learns to drink from a bottle and also keeps nursing well.
• That Josiah would consistently sleep in his crib at night.

Thanks for your support and prayers!

Blessings,

Elizabeth and Graham
 

Great Expectations

Josiah at one month

Sorry for the long delay.  We are in need of more sleep.  We are ever hopeful that Isaac will return to sleeping until a reasonable time in the morning (now that he has recovered from his throat infection and fevers of last week). We are also praying that Josiah will find peace in his crib and not just on his Mommy during the night.

Last Thursday we had another surprise trip to McMaster due to Josiah's high heart rate and low oxygen saturation levels.  The results of his ECG and echocardiogram were positive except that the leakage in Josiah's main heart valve (between his atria and one large ventricle) has increased.  Josiah was taken off his diuretic medication. 

This past Tuesday we were at SickKids, and his cardiologist was very optimistic.  He doesn't expect his pulmonary stenosis to increase and he said that the leakage in his heart valve is mild to moderate but not something that needs intervention now.  Josiah's heart rate and oxygen saturation levels were both good.  The holter monitor report showed that Josiah has a mildly rapid average heart rate with brief episodes of a very fast heart rate.  These are irregular and the heart slows down afterwards.  They'll keep an eye on this but the doctor wasn't concerned.  He asked us to come back to SickKids in two months time and to go to McMaster in one month.  In the meantime, we'll visit the local paediatrician once a week (instead of twice weekly) and continue to monitor his health while praying for his healing.

Isaac at 17 months

When Josiah is three months old, the cardiologist will start presenting him to the surgical team at SickKids to discuss options.  If Josiah needs surgery before he is four months old, it would probably be due to his pulmonary stenosis.  Thus he would need a shunt to keep his pulmonary artery open wide enough.  If he doesn't need surgery until after four months old, he will have the BPCS (Bi-directional Cavo-Pulmonary Shunt) which channels the blood from his two superior vena cava to the pulmonary arteries.  During either of these surgeries, the collector veins that travel from his lungs through his liver would also be redirected to go directly into the heart.  The cardiologist noted that the BPCS would be ideal around 6 months of age but the surgical team may want to do this earlier due to the issue with the pulmonary veins going through the liver.

We are very thankful for this great report and we are looking forward to this upcoming season of fewer visits to hospitals.  This weekend we are going solo without any grandparents around so we are praying it all goes smoothly.  We have certainly been spoiled with all the extra help in addition to the meals, gifts, cards and encouraging words from family, friends and coworkers.  It's great to know we're not in this alone!

Some prayer requests:

• That Josiah remains "balanced" and that his pulmonary veins do not become obstructed.
• That Josiah would sleep in the crib during the night.
• That Isaac's sleep schedule would improve.
• That we would have wisdom in making decisions regarding Josiah's health, and that we would be alerted to any negative changes in his condition.

Thanks again for your prayers.  Happy Victoria Day long weekend!

Blessings,

Graham and Elizabeth

Blessed are the flexible ...

... for they shall not be broken.

While I (Elizabeth) know that I am immeasurably blessed by God, I don't think it's due to my flexibility of any sort.  Let's just say that I like to be in control of situations.  Perhaps day to day life with Josiah will help me to appreciate the reality that God is always in control and I don`t need to be.  I suspect it may take a while to learn this lesson.

Yesterday we went to a 1:00 appointment at SickKids for a VCUG to check out Josiah`s kidneys.  We`d asked for prayer as we were told it would be uncomfortable to have the catheter inserted.  Well, the procedure didn`t go poorly at all as it had been cancelled but we hadn`t been told.  I feel bad that I felt the need to point out that we would be in the car driving three hours there and back for this procedure.  Clearly I should have been immediately thankful that Josiah wasn`t going through a procedure he didn`t need.  The staff person who we dealt with was wonderful.  We were meant to be at the hospital yesterday for other reasons.

Yesterday morning began with a visit to see the local paediatrician who again noticed that Josiah`s heart beat was very fast.  I spoke on the phone with one of our amazing nurse practitioners when I returned home and she suggested seeing her at SickKids after the VCUG so that`s what we did.  She agreed that Josiah`s heart certainly "chugs along." His oxygen saturation levels were also lower than usual.  We ended up having another ECG and an echocardiogram.  His ECG was normal and the echo showed that the pulmonary stenosis had not changed much (a good thing).  We also found out that the last X-ray at McMaster showed that "his lungs are not remarkable" (another good thing).  Since they do not know why his heart is beating fast, he was attached to a holter moniter that records his heartbeat for 24 hours.  We just removed it from Josiah tonight and I will Express Post this $3000 piece of equipment back to SickKids tomorrow.  Let`s hope it doesn`t get lost on its return home.  We should get the results next Tuesday when we return for another echo. 

While Josiah was having his ECG, his big brother Isaac was with his Daddy visiting our family doctor.  It turns out that he has a throat infection so he is now on antibiotics too!  Graham got up with him at 4:00 this morning when he woke up screaming, while I was feeding Josiah (which happens to be what I`m doing now so I`m typing with one hand.)

Josiah met his family doctor this afternoon who was quite surprised at how well he looks.  There are currently no appointments booked for tomorrow - we`ll see what the day will bring.

One surprising discovery we`ve made is that many people aren`t sure how to pronounce Josiah`s name.  In case you`re wondering, the "s" in his name sounds like an "s" (and not a "z") and you stress the second syllable "si" (rhymes with "hi") when you say the name.  However, we certainly don`t mind if you say it incorrectly.

Prayer requests:

• That Josiah`s heart rate would decrease and his oxygen saturation levels would return to (his) normal and the doctors would be able to figure out what`s happening
• That Isaac would get better and no one else in the household would get sick
• Safety while traveling 
• Sleep for everyone (Thankfully Josiah slept in his crib last night and only demanded to sleep on Mommy after 6:00 AM)

Thank you for your support and prayers!


Blessings,

Elizabeth and Graham

Great Health Care!

Hi Everyone,

This morning Josiah's paediatrician noticed that his heartbeat was still quite high (as it was on Monday morning).  We let SickKids know and they arranged for us to go to McMaster Hospital today.  The nurse practitioner there thought Josiah was breathing faster and working harder at breathing.  She also thought Josiah was retaining some fluid so he has been put on a low dose of medicine to help with the fluid issue which should also decrease his heart rate and breathing rate.

Josiah was planning to meet his family doctor this afternoon so that appointment has been rescheduled for next week (we currently have 4 appointments next week but three of them are local).  On Monday he will have a VCUG at SickKids to check that his kidneys and bladder are working as they should.  We were told that having a catheter may be uncomfortable for Josiah so we're praying it all goes well. 

Josiah did not want to go in his bassinet last night (we're not supposed to let him cry very much) so it made for a long night.  We're hoping for more sleep tonight!  Our $7 purchase of a bouncy/vibrating chair off Kijiji has proved to be a good investment.

We are doing well.  Graham worked three days last week and is back full time this week.  Josiah rarely fights when starting to nurse so that is a very positive change (especially because he seems to nurse all the time).  He has now nursed in several waiting rooms so he's made a lot of progress.  Isaac is wonderful and makes us laugh all the time.

Blessings,

Graham and Elizabeth;