Tyler Thayer   |   May 19, 2016

Nathaniel

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This is a piece of Nathaniel’s story told by his foster mom (soon to be just “mom”), Amy.

In July, my husband and I received a call to take two newborn baby boys through the foster system. We had been fostering for a year. We did not take the call because we were still getting over the loss of three brothers that had just left us to go live with a relative. However, several people at our fostering agency texted us that it was a call for babies and to call back ASAP. We did!! We were told Nathaniel_2they would possibly be adoptable. We had only signed on to foster, but something felt different with this call. So we told them to switch us to adoptive before getting off the phone. The placement person said, “Wait, there’s more.” We were informed that Nathaniel had Down syndrome (DS) and two holes in his heart. We were told this is typical with DS. Again, something still felt right and we said YES! When my husband and I got to the hospital and saw Nathaniel and his twin, Nicolas, we were bawling. I honestly had the same feelings I did when I gave birth to my teens. Nicolas was released from the hospital at 27 days old; Nathaniel was two months old before coming home due to some respiratory issues. He was on oxygen, a pulse ox, andNathaniel_3 apnea monitor. We spent many long days and nights in the hospital with these sweet babies.

After talking to the cardiologist, we were told Nathaniel had a large ventricular septal defect (VSD) and moderate atrial septal defect (ASD) and mild pulmonary hypertension. The cardiologist felt we should wait until baby boy weighed closer to ten pounds before repairing his holes. He felt they were not hurting him and surgery would be less risky. He said surgery would probably take place around four to five months old. Nathaniel had rhinovirus three times after release; this  damaged his already damaged lungs even more every time. He was also hospitalized all three times. We finally got a date for the heart surgery; December 19. However, on December 8, 2015, Nathaniel was admitted to the hospital with yet another virus. He was originally admitted for monitoring. That night he took a turn for the worse and was intubated on December 9. He continued to get worse and worse. On Christmas his right lung collapsed and two days later his left lung collapsed. Doctors were telling us his outcome didn’t look good. He was already maxing out on vent settings and on Nathaniel_4nitric. His pulmonary hypertension (PH) was also getting worse; damaging his heart and lungs even more. In mid January we were told there was nothing else they could do for our baby in Knoxville. He had been sedated and paralyzed for over a month. Finally, someone pushed for a transfer to Vanderbilt. We had been fighting to get him there for so long.

Once he arrived at Vanderbilt they diagnosed him with severe PH, this was due to his cardiac defects going unrepaired for so long. After many, many setbacks he was finally scheduled to have heart surgery February 4. He would still be left with the ASD and a partial VSD to allow the excessive blood flow due to the PH a place to go. Doctors said he should be extubated within two weeks. This did not happen. Again he continued to get worse. We were told about palliative care and told he would have a poor quality of live with a trach, which he was headed for. Without even thinking we said, NO. We want him to live. The doctor again brought up palliative care and said he would only live to be three or four and if he did well and didn’t get sick maybe 13. Palliative care was still not an option for us. We were then moved from the cardiac pod at Vandy to the medical pod to start new medications. Once, on the medical side he started receiving IV remodulin. Within two weeks it was like looking at a different baby. He was more awake and alert. They started weaning his vent settings and medications. On April 8, he received a trach and a G-tube. He is still on the vent and will be for awhile. But we have hope and always have. The doctors are already preparing us for taking him home. Some doctors even feel he may outgrow the need for the vent in the future.

The day we said YES was one of the best days of our lives.  Nathaniel has taught us so much as a family. He has taught us how to be brave, how to love more deeply, to have more faith, to pray and look to God so much more. He has taught me that some days you just have to give it all to God and pray without ceasing.

Currently Nathaniel is still in the PICU at Vanderbilt. He is making great strides towards going home! He is now off the hospital vent and doing well on a vent that he will be able to use at home. The reason we support CHD research his for sweet kids like Nathaniel. We want to see them home, with their families, and living life outside the hospital walls. If you’d like to learn more about Project Heart or make a donation to CHD research please visit our website projectheart.org

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