Kate Anderson

@kateanderson | contributor
I have three kids with special needs, which has inspired me to share my experiences, struggles, and triumphs. I want to help and give hope to families on the same journey as I am. I love God, my family, writing, reading, and movies. Follow my journey at http://thisspecialjourney.com/
Community Voices

From 8 surgeries in two years to thriving toddler

Nothing is harder for me as a mother than to watch my kids suffer through surgeries, procedures, and hospital visit after hospital visit. It’s even more hard when I can’t do anything about their pain or help them in any way. All three of my kids have had surgeries, but nothing compares to my son Daniel who’s had eight in two years.

Daniel has some physical abnormalities that led to a number of surgeries in his first two years of life. He was born with #Vacterl assocation (Vertebrae, Anus, Cardiac, Trachea, Esophogus, Renal, Limb) birth defects that affects multiple parts of the body. Daniel has five of the defects including tethered cord, imperforate anus, narrow nasal passages, one kidney, and clubbed foot.

He’s had a surgery for every one of the defects except the one kidney. His biggest surgery was when he got his colostomy stoma takedown in the summer of 2017, because he had to do it twice.

Daniel was born without an anus and needed a colostomy bag right after birth. He had his stoma takedown a year later, removing the bag and stayed in the hospital for five days. He was eating well and pooping regularly so he was able to go home. Two days later he was running a fever of 100.8 degrees, wouldn’t eat anything, slept all day, and was bloated. The doctor told us that if he’d gotten an infection from surgery, we wouldn’t see symptoms for five days. That’s exactly what happened. The intestine leaked from where it was stitched up. The ER doctor had to bring up stomas again, because the area was too contaminated to just clean it out.

I had never seen him so out of energy before. Daniel is usually running all over the place, but was laying down a lot and very quiet. He denied Pedialyte which at the time he loved. My gut feeling told me to go to the ER, which saved his life. We caught it at the beginning stages before it really spread.

Daniel was in the hospital for another 12 days on antibiotics to clean out his system. He wasn’t able to eat until his system was cleared from all the bacteria so he became really lethargic. His temperature kept going up and down, but his labs and tests came back normal. So, he was moved to the Pediatric Intensive Care Unit (PICU) after three days to monitor him a little closer since they didn’t know why he was getting fevers. His system was clearing by an Nasogastric tube (NG) through his nose. Since they were running so many tests and couldn’t get a good IV due to lethargy, they decided to put in a Central Venous Line Placement through his neck. This helped with giving him medication, nutrition, and blood samples without poking him so much.

It took about six days for the NG tube to look clear. The only thing that came back from blood cultures was the infection which was expected. What was frustrating was how surprised they were by his lethargy and no energy. I reminded them that he hadn’t eaten in five days. My mom said it best, “What’s he supposed to be doing? Jumping around in his crib?” It didn’t make sense. It was hard seeing him so weak, not allowed to eat anything. There was nothing I could do for him. He also cried everytime anyone came in the room.I felt like I was never able to comfort him when he needed it most. I couldn’t hold him for the first three weeks after his thisspecialjourney.com/2018/09/12/a-love-hate-relationship-w... and then I wasn’t able to console him during his most vulnerable trials. In the most crucial parts of Daniel’s life, I felt like an outsider, even though I was right there with him

.Once the NG tube was clear we did a CT scan which showed there were no pockets of infection. His blood levels were low so we decided to do a blood transfusion. The transfusion helped and he could finally eat after nine days.He spent his 1st birthday in the hospital but the nurses made his day special. They decorated his room and gave him some treats. We had a little party for him in the waiting room and he had enough energy to hang out with us for a little bit before going to bed.

When Daniel came home he was very weak. It took him about two months to get back his strength. His physical therapist said that two weeks on bedrest takes away 80% of strength.Three months later, Daniel had his stoma takedown again and it went much better. Other than the colostomy, anus, and two stoma takedown surgeries, Daniel also had surgery on his nose twice to widen his airways, his achilles, and on his back for tethered cord.

What gets me through these hard times is prayer and knowing God is there with us every step of the way. With everything going on with my family, I don’t really freak out about anything. I know people are praying for us, because I truly feel that love and support, which makes me so calm.

Daniel’s physical disabilities and surgeries have delayed him a little bit, but nothing stops him from doing what he wants. He wears special orthotic shoes for his clubbed foot, which delayed his walking, but through physical therapy he was walking in no time. He only wears the shoes at night now.

Daniel is finally thriving and doing things other two-year-olds do. He’s learning his shapes and colors right now. His imitation is incredible and does really good copying other people. We’re learning sign language for his brother Nicholas, but Daniel picks it up really quickly. He’s doing better with his eating and talking every day. He does occupational therapy once a week, speech & feeding therapy twice a week, and physical therapy twice a week.

He’s certainly a fighter and is the strongest boy I know. Despite all he’s been through, Daniel is a happy little boy. I see God in him, and he’s definitely taught me what love is all about.

Kate Anderson

What It's Like Having a Third NICU Baby in Three Years

I thought the birth of my daughter would be different than my sons. I honestly believed this baby wouldn’t have to stay in the hospital longer than a few days. I imagined we would be able to go home together. I had a good pregnancy with my daughter Grace. I had more amniotic fluid than normal with her, but other than that, it was pretty smooth. When Grace was born, she choked on some amniotic fluid, had some trouble breathing, and was immediately taken to the NICU. I didn’t even get to hold her. I touched her hand through an isolate as they were wheeling her away. With our third baby in the NICU in three years, everybody knew our history. Her doctors immediately started doing some tests on her. Within the first few days of life, she had an echo on her heart, abdominal ultrasound, an MRI on her brain, and genetics testing, which everything came back normal. (The genetics tests was a panel of only about 200 genes). People asked us if more kids were in our future. Nurses and doctors would ask us, “so are you done?” or “are you going to have more kids?” It was almost like they were really asking us, “did you learn anything this time around?” They said words like “unlucky,” “a bad hand,” and “unfortunate.” It was hard having faith when everyone around us had a different mindset. Grace had a difficult time breastfeeding and taking a bottle. It was hard for her to compress down on the bottle, because she has a high palate. We tried slower nipples on the bottle and gave her breaks every few sucks. The slower nipple bottles seemed to work so we went with it. She was doing well with feeding and her oxygen level was good. She passed her hearing test and all her labs looked great, so we hoped she’d go home soon. Things were looking up. But then she started coughing on the bottle. This was something we’d seen before with my son Nicholas. We knew it all too well. We knew it was possible that she was aspirating her food. But we still had hope that maybe she wasn’t. Her oxygen never dropped. She was doing better with feeding every day, pacing herself and taking breaks. A few days later, Grace had a swallow study that confirmed she was aspirating. She needed a feeding tube just like her brother Nicholas. I already knew it. I just had a feeling. I had already accepted it and wanted her to have the surgery as soon as possible so we could get her home. We didn’t want what happened with Nicholas to happen with Grace. We didn’t want Grace to be in the hospital just to be there. I voiced my concerns to her doctor and he agreed with me. We requested the same surgeon for Grace who also did surgeries for Nicholas and Daniel. She was someone we had been seeing for three years and trusted her. Grace had surgery for a G-tube and Nissen at 10 days old. She recovered really well and her feeds were increasing every day. She moved to the graduate side two days post surgery. She was scheduled to go home soon. Then, the day Grace was supposed to come home, there was drainage coming from her G-tube site and belly button, where her cord came off. She was diagnosed with MRSA, a bacteria that causes infection, and would be on antibiotics for five to seven days. It was devastating. It was the worst thing I could hear. I wanted it to be a short stay and just wanted her to come home. This was getting harder and harder every year. Watching our kids lay in their beds in the hospital for more than a few days was getting old. I was over it. I was done. After a few days, her doctor said she could come home. He had given Grace a 48-hour antibiotic and she was doing better. She was discharged the next day. Grace was in the NICU for three weeks, the shortest stay out of all three kids. Thankfully, we already knew how to use her equipment going home since Nicholas also has a G-tube. That made the transition that much easier. With three kids in the NICU in three consecutive years, it led to some more in-depth genetics testing. After receiving some positive results, we are questioned frequently whether more kids are in our future. Honestly, we have no idea what the future holds. We don’t know what God has in store for us. One thing is for sure though. Our family is not unlucky or unfortunate. Yes our situation may be tough, but it’s certainly not wrong or bad. Our kids are happy. Truly happy. And that’s all that matters. We have given them life. And that’s the best gift you could give anybody.