Quite a mouthful

Just like that, day two of Koal’s little life has come and (nearly) gone. Another whirlwind day for me and Adam, as I was able to be discharged from the hospital around 10:45am and we went straight to Children’s Mercy to be with Koal. It was so wonderful to be reunited and even have the chance to hold him briefly for a few minutes this morning.  He looked wonderful, which was such a praise and relief, as the last we had both seen of him yesterday he was still intubated and had a feeding tube in his nose, as well as all of his umbilical IVs and heart and lung monitors. Last night they were able to removed the breathing and feeding tubes, and we were told he had a mostly restful, stable night. We spent the entire afternoon at CM with visits from grandparents, great grandparents, as well as multiple aunts and uncles. We also spent quite a bit of time with multiple members of Koalton’s cardiac team, as well as nurses and hospital coordinators and consultants. It was good for me to be able to talk with our cardiologist, Dr. Shah, who just explained to me again what he had told Adam last night.  No new information, but good to hear it again and process more.  He and Linda, the lead cardiac nurse practitioner on Koal’s team, did present us with a diagnosis of sorts for his heart conditions. They say we’re going to call it:

Dextrocardia with atrioventricular discordance, a VSD (ventricular septal defect), PA (pulmonary atresia), and some additional vessel issues.

Quite a description…and quite a mouthful. It covers most of what was described to us in last nights findings, and while a number of the defects are similar, Koal’s new diagnosis will not actually be Tetralogy of Fallot at all. Linda also hand drew a picture of what they believe Koal’s heart looks like with all of these defects, and hopefully I’ll get that posted in the next few days for anyone who’s interested. Dextrocardia is the condition that describes Koal’s heart being on the right side of his chest and being positioned pointing abnormally.  Atrioventricular discordance is the name for the ventricles (lower chambers) being flipped and found on the incorrect sides of the heart (yes, you read that correctly, the RIGHT ventricle is actually on the LEFT side of Koal’s heart, under the left atrium). A ventricular septal defect is a hole between the two lower chambers of the heart. Pulmonary atresia is the name for the pulmonary artery being closed and therefore unable to pump blood to the lungs. AND, on top of those describable defects, there are additional vessel abnormalities and anatomical variants as well.

Dr. shah confirmed that although these defects are unusual and unique, the first step surgically is what we’ve been planning all along, the shunt to keep blood flowing.  The CM Cardiac team is meeting tomorrow morning to discuss Koalton’s case and begin to sort through what the next steps might be after his initial shunt surgery and recovery.  There are a number of different surgical options, each with advantages and disadvantages and possible future complications. Please pray for this team of surgeons, doctors and nurses who will meet tomorrow morning to evaluate the situation and begin to make decisions on our next steps.  They will also discuss and hopefully schedule a time for Koal’s shunt surgery, and we pray that it could be as soon as possible – maybe even next week sometime. With his size and stability thus far on our side, it is possible he will be able to have surgery sooner than expected and therefore start recovery sooner and COME HOME sooner.  Pray that would be the case and that Koal would continue to remain stable on his current IV treatment so surgery would not have to be put off long.  He will remain nourished and “fed” through his IVs until after surgery as well, so I am currently pumping and freezing milk for later use.  The most difficult part of that, is that because he’s not actually nursing, Adam and I do not get to stay at Children’s Mercy with him, we will just come home each night and return when we can during the day. 

Thank you for your continued prayers for US through all of this as well.  They mean SO much to us and God is answering them. I feel really quite good for just having a baby yesterday, and while we are both very tired, so far physically and emotionally we are doing pretty well.  We continue to feel God’s presence and peace in incredible ways, and we are comforted by His promises and so encouraged by all those praying for us.   Our heavenly Father is SO good…and we are so blessed to be held in His loving arms daily. May God bless all of YOU as well…we are so very thankful for you.