Once again having a medically fragile child has shown me how many things in life we take for granted. Eating, breathing, sleeping, running, walking, even birthing typically developing children. I often try to remember what it was like when Kingston was this young. How easy it was for us to feed him whenever he wanted, dressing him without a g-tube in the way, bathing him without having to apply special creams, taking him out in public and not worrying (too much) about all the germs we were bringing home. We have been working with a feeding therapist and a dietitian from almost the moment Fiona was born and I imagine we will continue for a while more.. While she hasn’t taken the typical path for eating, she is certainly making it her own path.
Before we had Fiona’s diagnosis I dreamed of being able to place my second child to breast, just like I did my first. Kingston and I had a wonderful nursing relationship. He loved his momma’s milk until the day he turned 13 months and then his lack of attention span ended that particular special time that we shared. By that time I was lucky to get him to focus for one full minute, let alone a whole nursing session. But, I was told over and over and over again that “Breast is Best” and damn it, we did it! So, when my pregnancy test came back positive the second time, I had visions of nursing again, and even hoping to surpass 13 months. But, when I sat down with doctors from Seattle Children’s and the University of Washington Medical Center to discuss the after birth plan of my soon to be born medically fragile child and was told that I most likely would not be able to nurse her, due to limited lung growth and stamina to suck, swallow, breathe, I was devastated. I cried from Seattle to Bellingham over the loss of a bond that I should feel with Fiona.
Eventually, much like other sad news and poor statistics in my pregnancy of the future of my unborn child, I knew that come hell or high water, my daughter would receive my breast milk, statistics be damned! On May 30th, 2013 when my minutes-old daughter was wheeled off to another wing to be intubated, stabilized and rushed off in an ambulance to another hospital, I insisted my nurse give me a pump so I could start pumping right away. I saw my first few drops of colostrum and I suddenly had the determination to pump and the desire to do what I could to help save this girl’s life. Little did I know that 7.5 months later, I would still be hooked to the machine , 5+ times a day.
While Fiona’s birth date is May 30th, her admittance date to Seattle Children’s Hospital is May 31st. She was born in the evening and was so stable that they delayed taking her to the hospital immediately, and kept her at UW for a few hours. Her repair surgery happened on June 3rd and because of a mishap with her PICC line, Fiona didn’t start receiving my large quantities of breast milk until June 21st, at 23 days old. Due to the need for increased calories, due to rapid breathing and the burning of calories, my breast milk was fortified with formula. Fiona was 8.4 lbs, up from her birth weight of 7.6 lbs.
The difference between rate and dose is that dose is how much total volume she is to receive and rate is how fast she will receive it. Her first dosing of food , through her ng tube (nasogastric tube – inserted through one of her nostrils, past her throat, into her stomach) was 3 milliliters (ml) at 3 milliliters (ml)/hour. Meaning that 3 ml of breast milk would take an entire hour to be deposited into her stomach. For someone that spent their first 9 months in utero, and 4 days out of the uterus, with their stomach under their ribs, directly in front of their lungs, this was a big deal. Surprisingly, she did amazing with it.
Fiona continued on a steady increase of breast milk intake and at a faster rate until she was discharged on July 10th and by that time she was taking 45 ml either orally or through her ng tube. We were sent home with the good faith and skill to take a bottle in the hopes that eventually Fiona would put her super hero cape on, throw the ng tube out of the window and take all of her feeds through a bottle, and maybe, just maybe, latch on to my breast and nurse.
Fiona was eventually connected with a dietitian in Spokane and off we went with increasing her dose, her rate and her skill. On the first appointment with our dietitian a few weeks after coming home, we were to slowly increase her dose to 82 ml and increase her rate to 52 ml/hr. We were to do this 7 times a day and offer her the bottle at the beginning of every feed. Quickly though, her interest in the bottle dwindled to an absolute refusal of that bottle nipple going anywhere near her mouth.
Fast forward to November 18th, 2013 and due to refusing to take the bottle and not taking in enough calories with non-breast-milk-foods, Fiona had a surgery to place a g-tube (gastrointestinal tube – a tube inserted into the abdominal wall into which liquids and medications are placed). Her surgery was a success and she was discharged from the hospital a few days later with no complications at all. However, the best news came 3 days after that as she was taken off fortified breast milk all together and placed on straight breast milk. I cried this day. This was the day that meant my body was giving my daughter everything she needed to be healthy. She was gaining weight beautifully and our doctors didn’t see the need to have extra calories added.
Our next task was to increase her oral intake. When Fiona started to completely refuse the bottle I gave away all her bottles, bottle warmers, nipples, and anything else that even remotely resembled a bottle. She loves to suck on her binky and even take a few sips out of our own glasses but she wants nothing to do with a bottle. Around the middle of December, our dietitian threw us for a curve ball and decided to take one of her 6 pump feedings a day and turn it into an all oral feed. Which means, instead of breast milk going into her g-tube, she would have a 6 hour break and anything that went into her body would go in through her mouth. We quickly found out that she preferred savory flavors to sweet, meaning she would take Turkey & Spring Vegetables baby food over pureed apples. Now, from someone who could live on chocolate, I find this tough to relate to. But, I just see it as more sweets for me 😉
Fiona took this new task at full speed. The girl loves her food. She will stare at you as you eat and send brain waves to you telling you to share whatever it is that you are eating with her. She loves popcorn, ham, turkey, bread, crackers, lasagna, orange slices (she’ll take some sweet), and pretty much everything else. She is getting used to different textures, tastes and consistencies. The list of what she wouldn’t take is a lot shorter than foods she will take.
Starting today, her feeding therapist and dietitian have thrown in another feeding so she is now down to taking breast milk through her tube only four times a day and start having two oral feeds. She has even been cleared to try dairy! So, it looks as though I will be sharing both my breakfast and dinner plate with my wonderful little foodie. She has traveled such a long way in her short 7.5 months here with us. She has shown us that CDH is no match for her and she has stepped on it, squished it, and left it out to dry. I can imagine her in a spandex jumpsuit (with a pink bow headband) in a wrestling ring with CDH and kicking the living day lights out of it. Her feeding therapist today called her the poster child for food aversions. She has proven to others that while the bottle is an important first step in our life, it’s not the only one.
Both of my babies have always been in the top percentile for weight and height and so it is no surprise today that my 7.5 month old daughter is at 19 lbs. She is 19 lbs of beauty, spunk, love, smiles, giggles, and wonderful, squishy love. She takes my breath away with her strength and determination. I am so proud to call myself her mother.
To all of my friends that read my blog posts: I want you to know that while you may know someone struggling with CDH, food issues, etc., they are also kicking some major booty. The fact that they are still here and showing us everyday that they are strong, resilient, and so powerful. Reading everyone else’s blog posts, Facebook updates, instagram pics, etc., has made me so proud to know you. Your children are so amazing and beautiful and if it wasn’t for your amazing self, they wouldn’t be here. This is such a tough journey but we are all in it together. I know so many people that would have my back at a moment’s notice and I want you to know that I would have yours at a moment’s notice too. You are strong, you are beautiful and you are so worth it.
Fiona's story 