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