TYSON MATTHEW KOTTELENBERG


"The Lord is faithful to all His promises, and loving toward all He has made." Psalm 145: 13b

This blog is about our eight year old son Tyson. Tyson was born with serious complex congenital heart defects, (Hypoplastic Right Ventricle, Tricuspid Atresia, Coarctation of Aorta, Transposed Great Arteries, with VSD and ASD.)
In short, the right side of his heart is completely under-developed (he has half a heart,) his main arteries are mixed up, and his aorta is narrow. He has undergone 3 open-heart surgeries and 5 heart cath procedures to try to 'repair' his heart. Sadly, Tyson has also been diagnosed with pulmonary vein stenosis, a fatal disease in the veins of his left lung. Typically, having the 3 palliative surgeries buys children with single ventricle hearts many years before eventually needing a transplant. But because of the narrow pulmonary veins, this increase in pressure is causing his blood to shunt the opposite way across his Fontan fenestration and surgeons are not able to close the fenestration. As a result, he remains on coumadin and is heading down the transplant road faster than we'd originally anticipated. He's still doing AMAZINGLY well all things considered. We entrust our dear son into the hands of God, knowing that in all things God works for the good of those who love Him!

Our baby has a healthy heart!

Today Brian and I went to Toronto for a few tests and appointments to check on the health of our new baby. We had a fetal echocardiogram of our baby in the morning at Sick Kids. We're happy to report that our baby has a healthy four-chamber heart! It sure is amazing how they can get such a good picture of a fetal heart that is only about 2 cm in diameter, all from within a womb that is only 19 weeks pregnant!
Next we had an anatomy ultrasound done at Mt. Sinai to make sure that all the baby's other parts are developing normally. Here again, we are rejoicing in the news that everything appears to be healthy and well! The baby was very stubborn and would not move out of his/her fetal position, was curled up in a ball laying spine-down, so the sonographer didn't get a very good look at his spine. But everything else looks wonderful so far.
As far as the "anti-c antibody" levels in my blood, the antibody has seemed to have disappeared for now. For how long, we don't know. The OB at Mt Sinai would like me to re-do the blood work again in two weeks to double check that it wasn't a mistake, and continue to monitor the levels throughout the pregnancy to make sure the baby is not harmed. My first two blood work levels indicated very low anti-c levels, ( 1:1 - almost the lowest titre level you can have) low enough that we can continue with midwifery care. If the levels get higher than 1:16, it will mean a Mt. Sinai delivery, with a blood transfusion to baby if needed. If the antibody stays gone, or the levels remain very low, we can still have midwives deliver the baby but he would need to be seen by a paediatrician shortly after birth, have bloodwork taken to check on his red blood cell levels, and then if jaundice begins to develop phototherapy would take place without any hesitation.
So, since I have to have the blood work re-done in two weeks, and since the ultrasound didn't give a good picture of the spine, we have another Mt Sinai appointment booked on Sept 12, the same day as Tyson's heart cath at Sick Kids. This will save us a trip to Toronto (we're already making 3 trips in 3 weeks this month!) and Brian can stay with Tyson in recovery while I get my ultrasound and another anti-c level done. Brian had more bloodwork done today, since his first draw only reported his blood type and not if he had the anti-c in his blood, so they would like to have on file where the little c antibody came from.
All in all, it was a very long but productive day. We're thrilled that our baby has a healthy heart and appears to be growing and developing well so far. God has answered our prayers in a huge way today. We're also praying that He will answer our prayers about Tyson's heart and lungs, and that his heart cath procedure on Sept 12 will go well.
That's the update for today! YAHOO! Praise the Lord!
Brian and Mel:)

3 comments:

Anonymous said...

That's great news!! Glad to hear that all is going well and we continue to pray that it will continue that way!!

Gerald & Michelle Knol & Family

Sara said...

Very Happy for you Melissa!

Anonymous said...

Congratulations and may things continue you to go well with Mom & baby....God is always there and all things are in his control!! Praise God!!

Pete & Sheila DeRuiter & family