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. 

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

Two Weeks Old

Dear family and friends,

Josiah has been home from the hospital for a week.  He is feeding better and growing.  We actually ended up taking him to the local Emergency Department at 3:30 AM on our second night home as his breathing and colour had changed but thankfully he turned out to be fine. All of the doctors and nurses were wonderful and very understanding. 

We met his paediatrician on Wednesday morning and we'll see him twice a week for now to ensure he continues to grow.  We were asked at SickKids if we knew of a local paediatrician for Josiah and were told that it can be hard to get one outside of Toronto.  Elizabeth remembered that her nieces had gone to one and suggested his name.  It turns out that he trained at SickKids years ago and specialized in neonatology and was specifically interested in isomerisms (Josiah has right atrial isomerism).  He said that many paediatricians wouldn't be familiar with isomerisms (as less than one percent of babies with congenital heart defects have an isomerism).  Once again, God has provided the perfect doctor.

We were at McMaster on Thursday for another echocardiogram, ECG and general checkup.  His oxygen saturation levels remain at an acceptable level, and there is no obstruction in the veins, which is very good news.  The cardiologist was very pleased with Josiah's status.

Isaac is a good big brother, but he does not always understand why he can't have Mommy to himself.

The next few weeks are full of appointments with the paediatrician, our family doctor, and cardiologists at SickKids and McMaster, as well as other departments at SickKids.

Some prayer requests if we come to mind:

• That Josiah's nursing would continue to improve, and that he would continue to put on weight.
• Safety during all the travel to and from appointments.  We always have to be mindful of where we can stop as we are not supposed to let Josiah cry too much, and sometimes the car seat bothers him.
• That Isaac would adjust to being a big brother.
• That Mommy and Daddy would get some sleep. =)
• That God would continue to give us wisdom in making decisions.

Thanks so much for your continued prayers and support.

Blessings,

Graham and Elizabeth

Together as a family!

Dear family and friends,

As some of you may know, Josiah was discharged from SickKids yesterday, and we made it home at about 10:00 PM last night.  Hard to believe that he is actually here in Kitchener!  Isaac is a great big brother, and wants to see "baby" and pat his head.

Many of you have asked via email whether this means he doesn't need surgery now.  At the present time, Josiah is "balanced" medically, meaning that his oxygen saturation levels are OK for someone with his condition.  As well, the areas in his veins and arteries where the cardiac team is most concerned about possible narrowing/blockage are not presenting a problem.  Therefore, this means that at this point in time, if this balancing act continues, Josiah could potentially skip some of the first-stage surgical interventions we were told might have to happen within the first days/weeks of life.  This buys him time to get bigger and stronger, to face future surgeries he requires.

At some later date (typically between 6-12 months) Josiah will undergo a surgery to reroute his superior vena cava (he has two, instead of one) so that the blood they carry from the top part of his body goes to the lungs directly, and not to the heart.  Additionally, at around age 2 he would receive another surgery to reroute some other arteries and veins so that the oxygenated and deoxygenated blood is kept separate, as in a normal person.  Each of these surgeries obviously carries great risk, and requires extended recovery.

So, it's a bit of a waiting game right now.  We are certainly praying that Josiah stays "balanced" and that he can skip the first-stage surgical interventions.  However, we are also constantly monitoring his appearance, feeding, sleeping, etc. for signs of possible congestive heart failure which would mean a trip to the hospital and possible intervention at SickKids.  As well, we'll have weekly appointments with either SickKids, McMaster or our local paediatrician to monitor his status.  We couldn't do all this without the tremendous help of Elizabeth's parents, who are living with us and looking after Isaac, and Graham's parents who fill in and come whenever needed.  Isaac certainly loves his Grandmas and Grandpas.

Some prayer requests at this point:

• Establishment of good breastfeeding for Josiah so that he gets all the nutrients he needs to grow and thrive.  Because of his heart condition he gets tired more easily during feeds, so Elizabeth has to assist him when he's feeding.
• That Isaac would adjust to life as a big brother, and somehow understand that Mommy and Daddy need to spend extra time with his little brother.
• That we would have wisdom to see any signs of congestive heart failure in Josiah, and that we would have peace now and in the future.
• That God would give all the medical professionals providing his care supernatural wisdom and skill.

Thank you to everyone who has sent encouraging words via email and cards.  We certainly feel surrounded by your love and prayers.  We probably won't be answering the phone for the next little bit, as we spend time adjusting to the new normal and trying to get some rest.  However, we'll try to post some regular updates on the blog so that you will know how we are doing and how you can pray.

Have a great night.

Blessings,

Graham and Elizabeth
thefaulkners.ca