Most of you know that our big day in Peoria was on Monday. We had several appointments that lasted all day, including an echo for Kai, meeting with maternal fetal meds and the doctors that would be delivering Kai, touring the hospital and the NICU, and meeting with the neonatologist.
Honestly, I was excited to go and spend the day with Dave and make plans for our little Kai entering the world! But what started out as a fun day ended in an emotionally draining day.
Our first appointment was the detailed echo of Kai's heart. After a LONG echo was performed by both the cardiologist and the sonographer, he had to break some pretty devastating news to us. Kai's very complex heart problem is worse and more urgent than we thought. The doctor sat down with us, with tears in his eyes and very shaky hands, and told us that it doesn't look like Kai will be able to survive longer than 12-48 hours after his birth, due to his heart problems alone. Needless to say, our hearts just broke.
The problem remains that his aortic valve has several defects. Without going into too much detail, Kai has 2 issues w/ his aortic valve, called critical aortic stenosis and aortic regurgitation. The aortic valve is completely responsible for the blood flow out of the heart and into the rest of the body. His valve doesn't open properly and can not carry out that very important function. The other problem (aortic regurgitation) is that the valve is incompetent and the blood flows in the wrong direction, back to his heart.
While we are still trying to make sure we are well-informed on our options, it currently looks like surgery is not an ideal option. If open heart surgery can be done, it would need to be done within the first few days of his life. This specific surgery doesn't have a high-success rate in a healthy newborn, let alone a baby with health complications.
I will say that I am so thankful that most of our doctors, including our pediatric cardiologists, have been wonderful! Most of you may not know, but Trisomy 18 is a very controversial disorder. Some doctors think that these babies should be left to die and obviously as I said before, termination is encouraged. A lot of mothers have to fight for appropriate care during their pregnancy and then also fight for care of their newborn as well. I have read many stories from T18 mamas about their doctors being very cold, negative, pushy, and also giving them false information to try to suede them in a certain direction. Our doctors have been amazing and have gone above and beyond to provide us with the best care.
After getting today's diagnosis, unfortunately, our doctor seemed to have very little hope, but tried to still remain positive and encouraging. After getting home and researching what he has told us (concerning Kai's diagnosis and the possible surgery), he was exactly correct. It's devastating to get this news, but it's comforting to know that we, including Kai, are getting the best possible care. I can't even imagine the stress of having to fight for care, while learning all of these things about our unborn child.
Please pray for us as we have to make some hard decisions. We need God to guide us and give us wisdom. We still have no doubt that God has a purpose and plan for Kai. We continue to pray that in the end, no matter what the outcome, God will receive all the glory!
Please also pray that we will be accepting of God's plan for him. This is SOOOO not what we want for Kai, but it is obviously what is best for him and our family. Even though this has been heart-wrenching at times, it is amazing that God has given us such an amazing peace. A peace that I never would have thought possible in the middle of such a hard trial.
Please pray for our kids. Some of them are more emotional than others and it's so hard for them to understand. Shoot, it's hard for an adult to understand, let alone a child! It just breaks my heart to hear them ask if just maybe the doctors could be wrong and maybe Kai will get to come home with us.
Please praise God with us! We are so thankful for the time that God has given us with Kai so far! When we first found out about his diagnosis, we knew his chances of surviving this pregnancy were very slim. God has given us 223 days with him since we found out he was with us! He has been loved and enjoyed for every single one of those days!
God has continued to teach us SO much through this journey. I have grown spiritually in leaps and bounds in these last few months! He truly knows what is needed in our life and my faith in our omniscient God has taken on a whole new meaning!
We will be meeting with our regular OB/GYN, Dr. Shepherd, and revising our plan tomorrow. I will be sure to share the details with you all soon!
Thank you so much for all the texts and FB messages that you sent, letting us know that you are praying for us! We appreciate your love and support! =)
Praying for you and your family! My family understands what you are going through accepting God's plan as we had our own hard path to walk with my niece who was born with a genetic disease. I pray God touches you, your husband, little Kai and your other kids during this difficult time. God Bless.
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