I'm not sure where the last two weeks have gone but it's time to let you know what's been happening. On the 15th, Josiah was dedicated to the Lord at Waterloo Pentecostal Assembly. It was so wonderful to have all of our family present. That weekend Josiah met for the first time his other aunt and uncle from British Columbia as well as his aunt, uncle, and four cousins from Stittsville. After the church service we gathered at my brother and sister-in-law's home for the rest of the afternoon. Following lunch, we read some blessings over Josiah in the presence of our family. We send a huge thank-you to my brother and sister-in-law for inviting us to use their home for this and for being such amazing hosts.
Faulkner family on Josiah's dedication day, July 15, 2012
This past Tuesday we left at 5:15 AM to go to SickKids for what we thought would be a sedate echocardiogram for Josiah. I stopped feeding Josiah around 3:30 AM because he was going to be sedated. He was doing quite well until shortly before the test was to begin and then he was crying because he was hungry. This meant that when his oxygen saturation level was checked, it was quite low. Anyway, to make a long story short, Josiah wasn't sedated and I was told to feed him. He was happy to be fed but he certainly wasn't about to let someone probe his chest without crying. They were only able to get a few pictures and those pictures weren't very helpful. They tried a long time. It was quite a frustrating morning. However, the cardiologist was optimistic that Josiah will make it past four months before he needs to have surgery. The ideal age is six months. He also said that he'd looked at images from Josiah's previous echocardiograms and he thinks there is only moderate leakage in Josiah's main valve, as opposed to severe leakage, so that's great news!
The next steps are for Josiah to have a cardiac catheterization in August (date not finalized) at SickKids. There will be appointments the day before the catheterization but after the procedure we will either be released or stay one night. He will have a general anaesthetic for this procedure in which a catheter will be put into a vein near his groin and then it will go up to his heart. The information they learn will help with the future surgery.
Yesterday we said goodbye to Graham's brother and sister-in-law and their wonderful children as they flew back to B.C. We're missing them already and Isaac has been talking about them. He had a lot of fun with his cousins.
Prayer Requests
That Josiah would continue to do well and that his surgery would occur at the ideal time
That the cardiac catheterization would go well (we'll let you know when we find out the date)
That Josiah's reflux would improve. The medication seems to be helping but he's been quite fussy of late.
Josiah turned 3 months old yesterday and he's doing great! We're thanking Jesus for great reports this week. On Tuesday he had an ultrasound of his kidneys at SickKids. He screamed for the entire procedure which took about 15 minutes (it seemed a lot longer). The ultrasound he had when he was a newborn showed that his kidneys are slightly different than normal (his difference is quite common). Fortunately his kidneys are working well. We met another wonderful doctor who said that Josiah doesn't "match his paperwork" as he was expecting a small baby. Our big baby weighed 6 kg (13.2 pounds) on Thursday at his appointment with our fantastic nurse practitioner and cardiologist at McMaster. They were both very happy with Josiah.
Josiah is feeding much better (as long as we get the antacid into him on time). He fed quite poorly two weeks ago but this past week he has done very well. He was in fine form to meet his aunts, uncles, and cousins from British Columbia. He's also been sleeping well. He's discovered the joy of sucking his fingers and hitting the chimes on his car seat. He even enjoyed his first ride on a hammock yesterday while his big brother Isaac was pleased to be introduced to his first freezie.
Josiah's next appointment is on July 24th at SickKids when he'll have his first sedate echocardiogram. After this appointment, the cardiologist will start presenting his case to the surgeons.
Prayer Requests:
That Josiah would continue to feed well and be less fussy
That Josiah would be able to wait until he is at least four months old before surgery (and hopefully longer)
That Josiah's dedication would go well tomorrow (i.e. not spitting up on the Pastor!)
We arrived at McMaster's Emergency Department at 9:30 on Friday night. Josiah had refused to eat for almost eight hours and only one of his feeds was a good length. We assumed the problem was his reflux and we were correct. Thankfully his amazing cardiologist was on-call and at the hospital. The doctor changed his medications and we saw immediate improvement. We were taken to the ward around 1:30 AM and were discharged mid-afternoon. Josiah fed so well on Saturday - he had normal length feeds and didn't cry once. It was so encouraging to watch him eat without pain and to have a content baby. We thought the feeding problems had been solved!
Starting on Sunday he began crying again during feeds and since then his feeds have been shorter (usually around 5-7 minutes) but more often. He's on two medications - one to reduce the acid in his stomach and the other to increase the speed at which the contents of his stomach move to his small intestine. We give him medicine from a syringe 8 times a day. Today he was quite fussy. The reflux is clearly still causing him pain. At least Isaac didn't have to endure all of the crying today. He was visiting with his aunt, uncle, and cousins and is currently having his first sleep-over there. We are so blessed that Isaac just seems to go with the flow. He often waves and blows kisses to "baby". This is certainly an answer to prayer.
Prayer Requests:
That Josiah would be able to eat without pain and eat enough so that he will continue to grow and not lose weight
That Josiah would not need surgery until at least 4 months of age
... 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.
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!
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.
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.
