Griffin (2009)

Griffin and his older brother Max

We learned of Griffin's diagnosis at week 20 in utero. We also learned at this same appointment that Sharon's cerclage had failed and she would have to undergo a second surgery and would spend the rest of her pregnancy on strict bed rest. We were not too surprised by the bed rest since we had similar complications with our first son Max.

Griffin was born full term on June 28, 2009 and is a "pink tet". He is 9 weeks old as I write this portrait. He has had several echos and visits to the cardiologists but no surgery thus far. The doctors all say his TOF is uncomplicated with good prognosis.

At last week's appointment, his oxygen saturations dropped to 85%. They had been >98% after birth and at all previous appointments.

Griffin is a happy baby, although he is markedly more fussy in the past week (but not cyanotic). Maybe this is due to the dropping oxygen sats or maybe it's due to some changes in his breast feeding (we are weaning him off of bottle supplements), or maybe it's just "him". He's still no more fussy than our first child (with no CHD).

So, at this time, we just wait and wonder what it will really be like as his surgery approaches. The cardiologists expect the surgery to be in two to three months. I guess we will learn more at next month's appointment. We are cherishing every moment with Griffin and his big brother Max for now. We are cautiously optimistic and hoping for the best.

November, 2009 Update

Griffin’s TOF, after being a non-event for his first two months, suddenly become an issue in September. On September 9, he woke from his afternoon nap crying. Then, instead of calming down as soon as he was picked up, he continued to cry and suddenly we noticed he was turning blue. We calmed him a bit and his color would come back a bit, but then he would start crying harder and turn blue again. After an hour and many of these blue cycles, he was finally exhausted and fell back asleep (no longer blue). Later that night he woke up and fed normally with no fussing or crying.

The next day, we called his cardiologist who had us bring him in for a check. While in the office, he had another tet spell that started when he began to cry while taking his blood pressure. The doctor witnessed this event and they found that his blood saturations were dropping into the 40’s and 50’s. They performed an echo-cardiogram and found that his pulmonary outflow was severely restricted. It had been decreased, but generally OK in the echo taken just two weeks earlier when his oxygen sats were in the mid 80’s..  The doctors did not feel it was safe for us to take Griffin home so they admitted him to Seattle Children’s Hospital. The next day he was “presented” to the Children’s cardiology team and they decided he should have his surgery for TOF complete repair scheduled as soon as reasonable.

Griffin had his surgery on Monday Sept. 14. All went well. The large VSD was closed, the pulmonary outflow tract was widened which required removal of his pulmonary valve. A transannular patch was sewed in to the pulmonary artery.. (Surgeon was Dr. L. Permut…really a nice guy with good bedside manner.)  The next morning, Griffin was able to breast feed and taken off the respirator. Later that day we decided to take lunch together. It was the first time since he was admitted that one of us was not by his side. Well, as you might expect, that’s when things apparently got a bit exciting. While we were at lunch, he stopped breathing for a couple minutes and one nurse thought she may have seen an arm move in a way that looked like a small seizure. After they stabilized him, they gave him a CT scan and found he had a subdural hematoma (basically some brain bleeding). They don’t know if the hematoma caused this apnea episode, but they were sure the hematoma originated around the time of the surgery. We were told that these things sometimes happen, apparently due to the blood thinners and the heart-lung machine.

Anyway, other than this one event, he recovered quickly and was moved out of ICU on Wednesday Sept. 16. On September 17, they actually said he was good enough to take him home if we wanted, but also understood if we felt uncomfortable taking him home so soon. We took him home the next day on September 18, and he’s been perfect ever since. We’ve been back to the cardiologist's twice and the echoes look perfect. His oxygen sats are now essentially 100%, even when crying. He’s also seen the neurologists a couple of time, but it appears the subdural hematoma is a non-issue. We certainly cannot tell if it’s had any effect as he seems completely normal. As a precaution, the neurologists have him on Keppra (anti-seizure medicine) for 9 months. He hates this medicine and it’s a challenge to keep him from spitting it out.

In the month after the surgery at home, Griffin was pretty irritable and needed to be held a lot (as you might expect). However, around mid-October, he returned to his “pre-surgery” normal mellow self. He’s now sleeping 7-8 hours at night and is happy as can be. We all feel so fortunate for the tremendous outcome and at this time he has no complications on the horizon. We look forward to every day with him.