We pray these special memories will help the parents to remember how strong they were in overcoming a crisis situation.
A note from Mom:"I had two beautiful baby boys at 24 weeks, 1 day. Chase weighed 1 lb. 10 oz. and Evan weighed 1 lb. 7 oz. They were born on April 23, 2013. They were transferred to Cardinal Glennon's NICU. It started out as a rough battle and unfortunately; we lost our Chase baby on May 23 due to surgical complications. Evan fought and fought and proved to be extremely exceptional. He was discharged from the NICU when he was 36 weeks and 2 days. He spent 84 days there. He came home on oxygen. Three weeks after he came home, he had to go back to the hospital to have surgery on his eyes for his stage 3 ROP. Fortunately, that surgery seems to have worked and the day after the surgery, he came off the oxygen. He's amazing and beautiful and the only reason we were able to go on after losing our son. We owe him everything.
I went to the emergency room when I was 23 weeks, 5 days. I was experiencing some mild squeezes on my bladder - it felt like I had to pee. I honestly believed it was braxton hicks and I was overreacting. So when the doctor finally examined me 2 hours later and I hear him say, "she's fully dilated," my world, my life, my heart, my everything changed right then and there. I believed I was going to lose my two baby boys that night. Fortunately, they were able to stop the contractions and transfer me to a hospital that specialized in premature birth. I spent four days in Trendelenburg with my feet above my head and a clamped foley, desperately trying to keep my water from breaking and the babies from coming. I was having contractions the evening of April 23. They kept coming - even though they weren't all picking up on the monitor. They brought in the ultrasound and said everything looked the same. Still, they wouldn't go away, despite the extra medicine (mag) I was on. Finally, around 9pm, they brought in the ultrasound again and discovered that the baby's sack that was in my cervix now contained a part of the baby's umbilical cord - which meant emergency c-section. Both of my boys were born at 10:22 PM on April 23. They were stabilized and transferred to Cardinal Glennon.
Despite the fact that they are twins, their NICU stories were quite different. Chase started off as the talk of the NICU because he was a 1 lb., 7 oz. 24 weeker that wasn’t intubated, just CPAP. He was doing amazingly well. Evan, however, had a much rougher start. He dipped to 1 lb. 1 oz. and as I woke up on my last day in the hospital, we got a call from the doctors saying he self-extubated and had a pulmonary hemorrhage and they were significantly concerned that he wasn’t going to make it. We rushed to get me discharged from the hospital so we could go be with him. We cried and cried. When we got to the hospital, he was on the oscillator – a very scary sight for a mother who had only really seen her sons once before. Pastoral services stopped by and we asked about baptism for the boys. They said they would get it set up and we had them baptized later that day. After everything they did for Ev, he remained stable.
A few days later, Chase could no longer sustain breathing without a tube, so he was intubated. He had the equipment to breath well but his brain wasn’t developed enough not to experience severe apneic episodes.
PDAs were a big topic of conversation in the early weeks. Both boys had PDAs so they decided to start a round of ibuprofen to try to close them. Evan’s went from moderate to small and Chase’s went from large to moderate. We were hoping to avoid surgery for Chase by going through another round, but we were unable to close his PDA. The doctors believed that he would benefit significantly from having his PDA ligated, so he underwent the surgery in early May. He handled it like a champ.
Meanwhile, they had started Ev on steroids to help him get off the ventilation. After his first round of dex, he was extubated and did very well. Chase was extubated after recovering from surgery, but it was relatively short lived because of his inconsistency in breathing.
Then, on Tuesday, May 21, we got a call saying Chase had an infection, but the doctor said his prognosis to recover was pretty good. The next day, though, the doctor called in the surgery team because x-rays showed air in his bowels. Surgery was in and out that day. Finally, after another x-ray at 6pm, they came in and said they were going to do exploratory surgery on Chase to see if they could find the problem.
Needless to say, we were devastated. Surgery on a two pound baby is scary enough. We were worried that is bowel would be necrotic, that he wouldn’t make it through the surgery, that they would find something debilitating. There are a million things to fear.
Chase went into surgery around 6:30. Around 8:00, we got a call saying that they found a small perforation, they removed one inch of bowel and that none was necrotic. They left a portion of his bowel outside of his body (stoma) and would go back in a couple months to reconnect it. Honestly, it felt like the best possible news. They found the problem, it was small, he made it through the surgery and everything would be OK. It would be a tough road with the colostomy bag, but we would make it.
We got back to the room and he looked so much better. His tummy was flatter…it had swollen pretty badly before the surgery. His color was great. They showed us the stoma and told us it looked wonderful. We hugged and were relieved. Then everything went wrong.
His tummy started to swell. His stoma looked bad. Something was wrong. And he started to go downhill fast. They called a code and he was being worked on by doctors and nurses. We were hysterical so they told us we should leave and go somewhere else and not watch what was happening. We went to the chapel and cried. They finally came to get us and brought us back. He was on the oscillator. The surgeon said that they didn’t see anything going on inside him from the x-ray and if they opened him up again, he would die on the table. They asked us to leave while they continued working on him. They got us a room that is usually reserved for parents that live far away. We went there to try to get some sleep. At about 3:30 am, we got a call telling us to come up to the room.
The doctor told us there was nothing they could do and that he wasn’t going to make it. They told us to take all the time we needed. We held him and kissed him. We had our parents come in and hold him. Finally, we were ready to say good bye. Actually, no. We weren’t ready. We decided it was time for him to go to heaven so he wouldn’t be in any more pain. They unplugged him and I held him while my husband sat next to me. And we talked to him until he left us to be with Jesus.
We left not knowing when we would be able to come back to the hospital to be with Evan because it was just too hard. We went home and slept and cried and slept and cried. At around 5 pm, my husband mentioned going to the hospital to be with Ev. I had been thinking about it too, so we decided to go back. We lost our other son, so the weight of our worlds rested on the little two-pounder’s shoulders.
The next few days were so difficult. The only time we were able to find some peace was when we were at the hospital with Evan. He was light in the darkness. Still extubated, Evan started to go downhill really fast. We got a call the morning of the funeral that he had to be intubated again because he kept having really bad episodes. I truly believe he knew that something was wrong and was reacting to losing his brother. Even though they hadn’t been side by side in a month, he still knew.
When we arrived at the hospital Tuesday after the funeral, I was convinced that he was going to die. He was having really bad episodes with his breathing and heart rate. I didn’t think he would make it. Then, Wednesday, our new doctor came in and spent time with Evan. He told us that it was the ventilator that was causing this, not Ev’s insufficiencies. He spent time looking at Ev, the machine, the monitors – at least 45 minutes. Then, miraculously, everything changed. From the moment he did that, within 1 ½ hours, Evan was on the right track and he never looked back.
He was extubated 1 ½ days later. He went straight to the bubble CPAP and was doing wonderfully. He spent a month on the bubble getting weaned every five or so days.
At 32 weeks, 6 days, he took his first bottle ever! Four mls for my rockstar! Then, on his third bottle attempt ever, he took all 47 ml!!! He was making such great progress; the doctor said he predicted he would go home well before his due date.
The suck, swallow, breathe thing was still quite a task for him, but he kept plugging away. Still lingering was his bilateral hernia that he would have to have surgery to repair. Surgery and our family didn’t have the best track record, so it was pretty scary.
When he was moved to nasal cannula, they started discussing the surgery. He went in on July 6. He came out hernia free. The extubation experience wasn’t great, but he made it through and back on a smidge of oxygen.
Everything went really quickly after that. They got him off the heat and into a crib, removed his NG tube and gave him all his bottles by mouth. And then, they decided that he would go home on July 17, exactly four weeks from the day the doctor said it would be four weeks. He is exceptional.
Ev graduated the NICU when he was 36 weeks, 2 days adjusted and 12 weeks old from his birthday. Evan left as the talk of the NICU because of this exceptional feat for a 24 weeker.
After coming home, we did find out that he had a bad enough case of retinopathy of prematurity to require laser surgery. So we were back to Cardinal Glennon two weeks after he was released for an overnight stay. He made it through the surgery wonderfully and the day after, we decided to try him without oxygen. He’s been off ever since.
He’s 8 lbs. as of August 20th.
Rachel Demand - St. Louis, MO
A note from Rachel:
"This family really touched my heart. When you contacted me to photograph them I read the story and sat and cried. My heart broke for them. They have been through a very long journey and I can't imagine what it is like to lose a child.
The minute I walked into the Foster's house you could just "feel" the love they have for Evan. They are wonderful parents and Evan is just the sweetest little guy. Michelle and Nathan thanked my several times and expressed how much they appreciated me doing this for them. What they don't know is how much they touched my heart. I listened to them both tell their story about their journey and how they lost little Chase. How Evan was the small one and they didn't think he would make it. How they had to go back into the hospital after losing Chase to be with Evan. I look at these people and they have been through so much and their spirit is beaming! After the session I went home and looked at my own three healthy kids and thought about how lucky I am. I always feel that people enter your life for a reason. I think the Foster's entered my life to make me realize just what I have. I have been super busy the past 3 months and I know I haven't been giving my kids all the attention they need. After leaving the session last Sat I have been reworking my schedule to fit in more time with my kiddos. We take for granite what we have and sometimes it takes a special person to make you realize that! I want to thank the Foster's for allowing me to come into their home and photograph their beautiful family.
The ladybug you see throughout the photos is a representation of Chase. :)"
Graduation Day from the NICU!
Look how big he is now, compared to the Ladybug!! :)