Kora's Diagnosis

Kora was brought down to the NICU shortly after she was born so they could get a proper picture of what was really going on with her heart. My husband/her dad, Garion, was with her the whole time. They did over a dozen different tests, scans and blood workups to try and give us the best information they could. I was not there for this part as I was in recovery after birth.

When I was finally able to come down to the NICU, it had been a few hours. No mother wants to see their baby hooked up to many different machines and not be able to hold them. A couple hours later, the cardiologist was ready to come let us know what her condition was.

Kora's official diagnosis was classified as dextrocardia and L-TGA (CCTGA) as the following list can placed in one of the two classifications. Her complete list of abnormalities is as follows:

1. Dextrocardia (https://medlineplus.gov/ency/article/007326.htm)

2. Large VSD (https://medlineplus.gov/ency/article/001099.htm)

3. Small ASD (https://medlineplus.gov/ency/article/000157.htm)

4. Pulmonary Stenosis (https://medlineplus.gov/ency/article/001096.htm)

5. AV and VA Discordance (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1769184/#:~:text=Atrioventricular%20and%20ventriculoart)

What this meant is that the heart had corrected itself during development so that it was functioning perfectly for the time being. Typically they will see the greater arteries flip but not the internal chambers so they have to go in and correct it. Koras wascorrected during development. We like to refer to this as a miracle. The only concern at that point was the hole between the ventricles. They monitored her for 24 hours and after they did the remainder of their tests to confirm she was stable, we got released from the NICU. The following evening we were given the okay to go home. It was amazing considering we prepared to be in the hospital for much longer. Not only that but we were able to be home to celebrate Ella's second birthday!

We went back two weeks later to do another Echo and all looked great! Our biweekly checkups turned into monthly ones. Everything looked great at the following one as well. Life continued on as normal for us. All was well and mostly normal until our appointment on November 8th.

We went in for our monthly checkup and things had taken a turn for the worse. We were told she would now be requiring at least 3 surgeries and her heart was straining more now. Kora was now is the beginning stages of congestive heart failure. He lungs were getting too much blood to them and were needing to work harder in order to get blood oxygenated and back to the heart. We were told to start giving her a diuretic medication called Lasix to help dispose of the extra fluid to give her lungs an easier time with their job.

On the 14th we had our first pediatrician appointment and were told that her growth is concerning. It's not uncommon for babies with her condition to have trouble growing. When Kora was born she was in the 60th percentile for weight and since dropped to the 6th percentile. One of the side effects of Lasix is weight loss due to water loss. It was not surprising that her growth was being effected by this all but it was sad to hear. We were told to start supplementing so we could get some better weight gain. Unfortunately, Kora was taking a bottle almost daily but the day we were supposed to start supplementing was the day she decided to stop. We are still working on ending this bottle strike that she is on but are not sure what will happen if we can't get her to take one again.

We went back to the cardiologist on Friday this week. Things had not yet improved with Kora. The meds were not helping like we had hoped they would. She is now taking 2 doses a day in hopes it will buy us more time before surgery. The cardiologist said he kept looking at her imagining and is thinking that it may only be 2 surgeries now. We go back for a followup on Wednesday this week to see if the meds have been helping. Sadly, I have not seen any positive change in her breathing in fact, I feel like it may be getting a little worse. One of the positives at our last appointment is that she had put on a little under 3 Oz in 4 days and our pediatrician was satisfied with that weight gain!