Bringing Oliver home was SO scary. I was terrified he would break at any moment. He had a feeding tube and oxygen on him at all times. It felt like we were confined to a small space. I hated having cords connected to him all of the time. It was very frustrating trying to console a child that had a lot of “baggage”. David and I were both so exhausted. I started back to work immediately and worked opposite Davids school schedule. We could not take him to a daycare for fear of getting sick.
My sister Abbie bought us a gigantic bottle of hand sanitizer and we became germaphobes. We washed and sanitized multiple times a day. We did not take Oliver out anywhere! We were warned when leaving the hospital that a cold or flu could land us back in the hospital. David and I would alternate weeks at church so one of us could stay home with Ollie. We did this for 6 months. People were very respectful of our bubble and we didn’t have any boundary problems. All of my shame went out the door and I attached a little stop sign to Ollie’s car seat that said “don’t touch my hand until you have washed yours”. If I could have picked what it said I would have picked “don’t look at me or touch me”. I got advice from a heart mom friend that told me about the “3 cough rule”: If some one around you coughs 3 times you leave. We had to take precautions like this because he was so susceptible to getting sick. I don’t regret being crazy at all! We managed to keep Ollie from getting sick! He didn’t even get a sniffle until he was 7 months old. We managed this with lots of hand sanitizer, soap, being hermits, breast milk, and lots of help from heaven!
Oliver started getting Synagis shots right when we got home since we were in the cold months of the year. Synagis is a shot to prevent RSV. Babies that are premature or sick (like Ollie) receive these shots once a month for the first two cold seasons of their lives. The dosage is based on weight (and so is the price) so I would get a call from the clinic a few days before his appointment and I would report his weight for the day. The shots are EXTREMELY expensive but worth every penny. The shot is large and painful. He was not a happy boy when we left those appointments.
We saw a doctor at least once a week if not twice. We had a home health nurse see him twice a week. We weighed him every morning and administered his medications. I would get a call from primary children’s every week and I would report Ollie’s weight and how much he was eating at each feeding. I stressed like no other each week before the call. I was scared that he wasn’t gaining enough weight. We recorded each feeding in his medical binder. Each bottle was a concoction of breast milk, bananas (for thickening), and formula for extra calories. I was pumping 4 hours a day at this point. Life was crazy but good. Oliver decided to rip his feeding tube out a week after being home. I made the executive decision to leave it out and we just did bottle feeds. It had the potential to be a risky move but David and I decided we would at least try it out. Luckily he started eating enough by mouth and we were able to leave it out. We scheduled another swallow study for a week and half away and thickened his milk until then. He passed his swallow study with flying colors this time. We were able to stop thickening with bananas. Now we mixed breast milk and formula and that was it!
We landed ourselves back in the hospital 3 weeks after being home. Ollie’s incision looked red and inflamed. We were admitted to EIRMC and he was given an IV of antibiotics. Our pediatrician came to see Oliver and informed us that he just got off the phone with Primary Children’s and they wanted us down there immediately. We panicked just a little and ran home to pack. I called the spa and had my appointments moved.
We stopped in Blackfoot and had a priesthood blessing….cried a little….and then sped to Utah. We weren’t sure how bad the infection was. We were told that they may have to open his incision up to take care of it. It ended up just being a stitch abscess and we only had to stay in the hospital for 6 days. We had a scary moment during this hospital stay. While changing Oliver’s diaper I noticed blood in his stool. I immediately broke into tears. Blood in the stool is a sign of the infection called Necrotizing Entercolitis. This would mean an extremely extended hospital stay and possible bowel surgery. It is an infection we definitely wanted to avoid. David immediately gave Oliver a blessing and we said a heartfelt prayer that Oliver would be okay. I reported the incident to the nurse and she called the on call doctor. They ordered an xray. It would happen around 3 am. David and I were very anxious. We asked our families to say a special prayer for Ollie. The xray came back clean. Oliver’s bowels looked perfect. We were so relieved. They ordered one more xray for the following day just to be certain. It again came back clean. We were overwhelmed with gratitude that he did not have NEC. The team of Cardiac doctors chalked it up to a dairy sensitivity. I was given the choice to continue pumping and cut ALL dairy out of my diet…..or quit pumping and give him non dairy formula. I felt very strongly that he needed breast milk and I went cold turkey dairy free that very moment. I had to “pump and dump” for the next week because the milk I produced would contain dairy. Meanwhile he was given an extremely expensive formula that he HATED. We tried a few others and he finally settled on a soy formula. David had to head back to school so I stayed with Ollie and prayed that we could go home soon. Money was tight and I needed to get back to work. Luckily our stay was short and we were able to resume our new normal life.
I believe we were given a miracle that night in the hospital when we thought Ollie had NEC. We may never know. I do know that I am thankful for the priesthood. I am thankful for prayer. It is real. It is powerful. It is healing.