I wish that I could say that Dr. Hashima at St. Vincent was wrong and that there was nothing wrong with Emmanuel's heart but that is just not the case. He was a little off in the exact problem but he wasn't off with how serious this is.
The problem with my son's heart is the Tricuspid Valve on his right side. Dr Shaughnessy from OHSU said that it is very rare and if she were to give the condition a name she would call it Tricuspid Valve Dysplasia. In her most honest opinion she said that she does not believe the baby will make it through the pregnancy.
Normal Heart Function:
Basically, blood is supposed to come in the right atrium, pass through a valve into the right ventricle and then on to the lungs. After hitting the lungs the blood comes back into the Left Atrium and then through a valve into the Left Ventricle then to the body.
Normal Heart: 
Emmanuel's problem is in the beginning of the whole process. The blood is coming in and when it passes through the Tricuspid Valve (which is deformed), it is not going on to the valve that leads to the lungs. Since his valve is not working properly, it is letting blood go back and forth between the right ventricle and right atrium. Which is causing the right side to be larger than the left (see dotted black lines on right side).
Diagram describing Emmanuel's Heart: (Black pen is what is going on with Emmanuel)
With this, issues arise...is he getting enough oxygenated blood to the rest of his body? Possibly from the umbilical cord at this point. His lungs are being compressed from the enlarged heart so they are not growing properly besides not much blood flow is getting to them.
If he makes it to term...more than likely they will deliver him early so probably by C-section, possibly around 36 weeks. He will be delivered at OHSU and he would possibly need surgery shortly after birth.
In all this I do my best to remember that God is in control and that He is with us and Emmanuel. There is no greater comfort than knowing that. He will not leave us here in this time and He has his hands on our baby. We continue to pray for a miracle, we continue to pray for wisdom and we continue to praise His Holy Name, no matter what.
Please continue to pray! Pray for a healing ultimately. For the valve to function correctly, for the lungs to mature, for the baby to grow into his already big heart. I have seen God do so many miracles, I know in my heart that a heart is small compared to my Big God, nothing is impossible with Him!
Pray for wisdom, for our doctors and for us, his parents. Pray that he can make it to 36 weeks gestation. Right now we are 19 weeks so we have a long way to go. I will be monitored closely with lots of ultrasounds. Pray his body grow each week.
Thank you Jesus that you came to save, that you came to heal and you came to defeat the enemy. Show us Your hands in all this. We praise Your Holy Name!
Amen
Thank you friends and family who stand in agreement with us for a miracle. Thank you for your prayers, support and help. We thank you all and love you all.
God Bless,
This picture was made by one of my younger cousins, who herself is a miracle of God. She said she made it for me to remind me that she is praying for Emmanuel. I love her heart so much. Thank you Katelyn!
Friday, January 14, 2011
First Meeting with the Cardiologist
Posted by Mrs. Incredible at 2:02 PM
Labels: First Visit with OHSU, news
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3 comments:
I found your site by way of the Olsen's (family friends). Having just read it and immediately prayed for you I wanted to share my story (readers digest version). My son was born 1lb 12 oz at 27 weeks. A week before he was born we were told his odds of having retardation, etc was 40%. If he didn't have those issues, his odds of blindness, deafness, etc were another 40%.Within minutes of his emergency birth he was put on a ventilator. On day 3 the machine keeping him alive blew three holes in his longs and they collapsed. Three chest tubes were inserted and we were told he would not likely make it through the night. A week later the tubes were removed. The following day blood was continuously coming out his feeding tubes. Over the 78 days he spent in the NICU, besides the aforementioned issues, he had a heart valve that didn't close until weeks later, he had a bleed in his brain, he had grade 2/3 retinopathy (4 is detached retina = blindness), etc, etc, etc. I tell you all this because my son is a very healthy happy 26 month old toddler who runs, sings and frequently even goes pee-pee in the potty. He shows no signs of any long term damage. I know he is where he is today because of all the heartfelt prayers sent in his name. Don't give up faith. His is not the only miracle I have seen in life and it surely will not be the last.
I will also add, Destiny, a lovely baby we have watched grow since she was Coop's roommate in the NICU was born a twin. If I remember the story correctly somewhere around 20 weeks her parents told her parents that her twin sister was taking all her nutrients. They were told she would not survive. Not that she might not survive - that she absolutely wouldn't. Destiny was 1 lb 8 oz at birth. She had several surgeries after her birth and her parents spent the better part of a year in the NICU/PICU holding her hand. That all ended a year ago when Destiny came home for the last time. Finally able to eat and move, she began to grow, develop and thrive. At 25 months she is eating solid food, talking, rolling over and has taken steps. AGAIN...if you take anything from my posts it is DO NOT GIVE UP.
Wow. Whew - Whoa....
Jennifer - chills/tears/prayers I am overwhelmed - please know I will join with you and so many others holding Emmanuel and your family in prayer.
Brandi - thank you for sharing your story! Becky
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