Helping Luca Overcome His Battles

On November 6th, 2023, our son, Luca James Lobello, was born at 24 weeks due to Placenta Insufficiency. He was a micro preemie weighing 1lb and 1 oz. We were very scared that he was not going to make it, he was a very critically sick patient. We had lost his twin earlier in my pregnancy. Luca was our rainbow baby, after multiple rounds of infertility treatments. Luca was the strongest little fighter as he fought his fight through so many obstacles that stood in the way. He laid in an incubator to rest, while he was receiving many medications through many IV’s. The only thing that kept him alive, was a ventilator that was breathing for him through a breathing tube in his mouth.

As weeks went by, our tiny miracle had overcome so many obstacles. Even though he made many steps forward to getting stronger and better, more and more problems stood in the way. We were by his side every day in the NICU. He developed a problem with his stomach, to where he had to have an emergency surgery, the end of December. They found a meconium cyst and a perforation in his lower intestine. 10 cm was cut out of his intestine and brought outside of his skin. He now has an ileostomy. After his first major surgery, he went into critical shock. All of his vital signs were low. He was placed on nitrous oxide for pulmonary hypertension. His lungs were paper thin, and developed two huge cysts in the air pocket of his lungs. As more weeks passed, Luca fully recovered. They were able to take out the breathing tube and place him on a CPAP mask. We waited over a month to hold him for the first time, since he was no longer on the ventilator. Luca was doing so great on CPAP, but pulmonary hypertension came back and he was going downhill. He had to be intubated again on the ventilator. Since he was already at 40 weeks corrected age, they decided, he needed to develop neurologically.

On March 6th, 2024, Luca had surgery to get a tracheostomy. We were so torn apart knowing how much work we will need to put into learning and training on his trach. No matter what, we did not give up. We learned about his trach every day. Things were headed in the right direction, till he then developed pneumonia and 2 other infections. His kidneys were failing, potassium levels were high. He was about to go into cardiac arrest. Neonatologist knew what was going to happen to him, and we did nothing but prayed. God healed Luca, and he finally was stable. Every day since then, Luca got better and better to where the doctors were finally talking about going home. We had entered 6 months in the NICU. As things were going smoothly, another issue appeared. His PDA got larger and he would need a heart cath soon. On May 29th, 2024, Luca was transported by helicopter to Del’s Children’s Hospital in Austin. Since we live almost an hour and 15 mins away, we were able to live in the Ronald McDonald House during and after Luca had his heart procedure.

We planned to get Luca transferred back to the NICU where he originally came from, however, another issue occurred. The eye specialist came and did an exam, which showed both of his eyes were entering a stage 3 ROP disease. The retina was still attached however, if no intervention was fast, he would go totally blind in both eyes. The retina surgeon performed laser surgery to hopefully keep the retinas from detaching. After a week had past, they rechecked his eyes, and unfortunately laser did not work. The retinas were slightly detaching, which he then entered stage 4 ROP disease. On June 20th, 2024, Luca went into emergency eye surgery. The chances were 50-70% successful. Luca has the best top 40 retina surgeon in the world. We trust this surgeon will help as much as he can to save Luca’s eye sight. Right now, Luca is still in the critical phase. He has an eye exam every couple of days to make sure the retina is still attached. No matter what, Luca will have limited vision.

During this devastating time, we have been right by Luca’s side through his journey. We are hoping after everything gets better, he will be getting closer and closer to coming home. Being a NICU parent is extremely stressful and difficult. There’s happy days and a lot of sad days. This journey has made us stronger than we could possibly imagine. As we live in the Ronald McDonald house until Luca is better, life is not the same. Especially being away from home and constantly in the NICU. We are unable to work during this time. We never have asked anyone for help, going on 8 months in the NICU. Any contribution, will make a significant difference in our journey while away from home at this time.