The diagnosis from the pediatric cardiologist is that Oliver has Wolff-Parkinson-White syndrome (WPW). This is not a genetic "syndrome" per se, but a condition of the heart that has been causing him to have episodes super high heart rate, shooting up to over 300 beats a minute. A normal heart rate for a baby his age is in the 130-170ish range.
At first we (Sonya and Joel) thought the concern was more about a heart rate deceleration, but now we understand more about the episodes he had been having:
The great news is that it is treatable! He has been on meds for the condition for 24 hours now and has had no new episodes of SVT! The stats for him growing out of the condition are promising as well - 70% of infants medicated for WPW syndrome outgrow the condition by age 1, and there are common procedures that can be done to correct the problem if he does not outgrow it. We will have a follow-up visit with the cardiologist in May to see how his heart is developing and how well the meds are helping. ***So, while this is not an overall diagnosis for Oliver's condition, or even a total diagnosis for his heart, we are really happy that this part of the puzzle is treatable.
Other good news - Oliver has been getting good marks for improved muscle tone, gaining weight, breathing efficiently without any help (the nurses kept finding his canula - the nasal tube with the low air flow - pulled out of his nose and he was still breathing fine!), and for his first real attempt at nursing today!
Finally, Elsa got to hold Oliver for the first time! She LOVED it. I kept asking her if she was getting tired and wanted me to take him, but she said she liked it and held him for about 20 minutes while we talked and read books together.
Thank you all for your continued prayers and support for our family and little Oliver.
At first we (Sonya and Joel) thought the concern was more about a heart rate deceleration, but now we understand more about the episodes he had been having:
- First, he would stop breathing for longer than he should (called apnea).
- Second, his heart would appropriately respond by drastically slowing down (called bradycardia).
- Third, his body would try to recover, but would jump into these super high heart rates (called SVT, supraventricular trachycardia) instead of a normal heart rate.
The great news is that it is treatable! He has been on meds for the condition for 24 hours now and has had no new episodes of SVT! The stats for him growing out of the condition are promising as well - 70% of infants medicated for WPW syndrome outgrow the condition by age 1, and there are common procedures that can be done to correct the problem if he does not outgrow it. We will have a follow-up visit with the cardiologist in May to see how his heart is developing and how well the meds are helping. ***So, while this is not an overall diagnosis for Oliver's condition, or even a total diagnosis for his heart, we are really happy that this part of the puzzle is treatable.
Other good news - Oliver has been getting good marks for improved muscle tone, gaining weight, breathing efficiently without any help (the nurses kept finding his canula - the nasal tube with the low air flow - pulled out of his nose and he was still breathing fine!), and for his first real attempt at nursing today!
Finally, Elsa got to hold Oliver for the first time! She LOVED it. I kept asking her if she was getting tired and wanted me to take him, but she said she liked it and held him for about 20 minutes while we talked and read books together.
Such wonderful news! Thanks for sharing :-)
ReplyDeletePraise God! He looks so big and healthy (for such a tiny guy)! Blessings on you friends!
ReplyDeleteI just read your blog and am thankful for a tenuous, electronic link that allows me to see more of you and your beautiful family!
ReplyDeleteYou and Joel have been in my prayers and heavy on my mind as our little Honeybuckle's due date approaches. Our fourth daughter Pip was born five weeks early, also, and even without attendant health problems, burned into my memory is the piercing gratefulness I felt for her tiny self during our relatively short hospital stay. It all came back in a rush as I read your post prompted by Chesterton's quote. Thank you for that. It's a truth we would all do well to keep in conscious word, thought, and deed.
I will continue to pray for you all, but especially for your mother's heart as you trundle between your home Loves and your hospital Love. My sister-in-law has had two babies who needed to stay in the NICU for a month+ thus far, and hearing of her experiences, struggles, and growth through those times has made me pray more fervently for your courage, rest, peace, and comfort. Praise God for bringing Oliver safely into this world! I trust He will continue His good work in Oliver's life, and that the grace of God will continue to shine forth from his little form. We rejoice with you from the opposite coast on the birth of a beautiful son!
-Abby (and a bearded husband, by proxy)