Multiple times a day I think about what a miracle Caroline is. I believe that all babies are miracles, but I personally witnessed a baby, my baby, live when, according to science, she really shouldn’t have. Her numbers from her blood work were always worse than Will’s, she had a pulmonary hemorrhage that could have very easily taken her life and she had the same exact diagnosis as Will. She contracted the same virus that took him from us. My daughter, Caroline, is a miracle.
Coming home from the hospital was a challenge and very scary for me. I have described before how fearful I was to bring her home by myself (click here to read more). During her first nine weeks at home, Will was still at the hospital and Taylor and I were barely at home together during the day and never at night. She was tiny and fragile and the next few months were filled with doctor’s appointments and visits to specialists. I didn’t realize that after you leave the PICU you don’t actually just get a free pass home. You spend months, maybe even years, following up. I don’t want that to sound negative because I am so thankful that we have an amazing pediatrician who is cautious and would rather send us all over the city getting check ups rather than wait for a problem to arise. An ounce of prevention is worth a pound of cure. I just wasn’t expecting it. Here is a little bit of what Caroline has been up to for the past eight months, celebrating all the progress she has made and a look into her future.
Caroline in the PICU, only a few weeks old, and Caroline now, nine months old.
In the months immediately following her release from the hospital, Caroline had follow-up appointments with every specialist that she had seen during her PICU stay. She had to either be “cleared” by each specialist or continue to have follow-up appointments until they felt she no longer needed to see them. The first appointment was with Cardiology. Our favorite, very patient doctor, was pleased with Caroline’s echo and said her heart was getting stronger and should make a full recovery. She came home with no heart medications and will go back when she is one to follow-up. Our next appointment was with neurology, where she received an exam and I got a mini-crash course on the human brain. We went over her CAT scans, MRI’s and head ultrasounds and I came in with a long list of questions and concerns that the neurologist diligently went over with me one by one. He concluded the check-up by saying that the only reason Caroline will suffer from any neurological issues would be because of me, if I treated her differently because of what she had been through - I guess I’m not good at hiding my paranoia. He was joking of course, but he did clear her and doesn’t have any reason to think she will need to follow up in the future. She has had two hearing test with an ENT. One side effect of one of the medications she was on in the hospital is hearing loss. She passed both tests and will have another one when she is two years old. Her next follow-up appointment will be with an Ophthalmologist, who will check her eyes.
Caroline had frequent visits to the Pediatrician’s office for extra check ups and weight checks. She started off not even on the growth chart. By the time she was two months old she was ten pounds, almost double her birth weight. At four months old she was 12 pounds and in the ninth percentile, she had made it onto the chart! At six months she moved up to the seventeenth percentile and at her most recent nine month check she was in the nineteenth percentile, weighing in at sixteen pounds. She might be tiny but she is a strong and determined little girl, gaining weight and growing just like she is supposed to.
I sometimes forget that Caroline is a little bit behind because she is so active, alert and responsive. Cognitively, she seems to be like any normally developing baby and I forget that her traumatic start to life has put her a bit behind physically. Just for reference, here are some photos of her brother and sister, both at nine months old. My son, who has always been in a lower percentile, was seventeen pounds at nine months. He was crawling well and pulling himself up to stand. Caroline's older sister is usually right in the middle of the growth chart, usually the 40-60%. At nine months she was eighteen pounds and standing, crawling and easily pulling herself up and going back and forth from sitting to crawling. Caroline sitting up well and can stand with help. She is working to reach her other milestones in therapy.
At six months, Caroline got evaluated for physical (PT) and occupational therapy (OT). She was not only premature, but having spent the first month of her life in the PICU set her back a little bit. PT and OT will help her reach developmental milestones so that her physical ability can catch up to her cognitive ability. She started PT around seven months old, not sitting up or rolling from her tummy to back. After two months she is doing well sitting up on her own and is working on twisting from side to side and eventually getting into a crawling position from sitting. Her OT goals focus on grasping, crossing the midline and sensory processing. She seems to be overly sensitive to loud noises and certain textures. Will’s OT in the hospital explained to me that babies who have been through a traumatic experience during or after birth often develop an aversion to touch or sound. Every touch she experienced in the hospital was aggressive - a needle poking her, something going in her nose or being put into an uncomfortable position for a scan or a test - and she is experiencing residual effects from that. She will continue with PT and OT for as long as it takes for her to catch up and she will also have a feeding evaluation with a speech therapist at the end of the month.
One of Caroline's Physical Therapy sessions at eight months old.
As a nine month old, she has experienced more trauma than I ever imagined. Despite the obstacles she has faced, she continually proves to be a sweet and charming little girl. I always say that Caroline sees the world in black and white, there is no gray in her mind She will either be the happiest, smiliest baby you have ever seen or scream louder than you thought possible for someone her size. Her smile literally lights up a room and we are admittedly obsessed with everything she does. I have had so many strangers stop me and tell me what a beautiful and happy baby she is and most of the time I think, “If you only knew what this little girl has overcome.” She has the best laugh, loves being carried around on my hip and will grab anything you put within her reach. There are multiple times each day that I am overcome with gratitude that she is mine, that I got to keep her and see her beautiful smile every day. I am so thankful that I am not missing Caroline’s life and at the same time I feel the equal amount of heartache that I am missing Will's. She reminds me of him every day and even though she will never know her brother, I truly believe that she will always carry his joy and strength and courage with her.
Our mission is to glorify God by supporting children undergoing life-saving heart treatment and creating a caring community for their families in honor of our son, Will.
My name is Courtney Hughes and I am Will's mommy. I am happy that you are here to read Will's story and make a difference with us!