The Mysteries of Feeding Therapy

I am often asked "what the heck is feeding therapy?" The photo in this post is of feeding therapy in action. Note that virtually none of this food was eaten. But the food was touched, which is quite an achievement. Eliza has been touching the food for about three weeks now which is excellent progress.


Feeding therapy requires hardwood or tile floors that can be easily cleaned, walls with washable paint, a dozen spoons for Eliza to play with, a z-vibe (vibrating thingie that you massage her mouth with), a nylon brush (to brush her skin to desensitize it), four to five different textured foods, a working knowledge of at least a half dozen children's songs and the patience of, well maybe not quite a saint, but at least someone who has been beatified, since feeding therapy requires endless repetition.


One of the greatest beneficiaries of feeding therapy is the Gerber company. Since three times a day I open about four jars of baby food to see if any will "work," I figure the Gerber people must think I gave birth to one of their best customers. To me, pureed squash tastes pretty much the same as pureed sweet potatoes, yet Eliza can figure out in no more than two spoons that I have snuck in the squash. Pureed bananas pretty much have the texture of yogurt, Eliza's main "food group." Yet Eliza can figure out before you can say Zwieback that I have traded her beloved yogurt for the evil banana puree.


There is an upside to the all yogurt diet. According to some old Dannon commercials Russian villagers who ate tons of yogurt lived to be 100 years old. I have the utmost confidence in the research performed by Dannon and can rest in the knowledge that Eliza has at least another 98 years to try squash.


Photo: Eliza Grace 18 Months Old

She Is Not A Picky Eater

Eliza has "feeding issues." Why these are not called "eating issues" is beyond me. Every time I talk about "feeding" issues I have a vision of feeding time at the zoo. Her feeding issues are sensory in nature. There is no mechanical/physical reason why she cannot eat. Her oral aversions are likely linked to the extended time on a ventilator and are just one more by-product of being born too soon.


I think feeding problems seem to be the least researched and least acknowledged problems that preemies and micropreemies, in particular, face. There seems to be an attitude that so long as your child can breathe, see, hear and walk, that anything else really isn't a big deal. Not so, if you spend half your day trying to get the smallest amount of food in your child and the rest of the day cleaning up vomit.


Eliza's diet is limited, she only drinks pediasure and eats a small amount of yogurt. Despite me repeating this about 100 times a day to everyone from the doorman to friends, family and doctors, no one seems to understand that this is all she really eats. If one more person says "does she eat ____, all kids eat _____" I will scream. Why, when people are told that all she eats is yogurt and formula must they persist with quizzing me about her intake from the four food groups?


Although people are well intentioned when they say "have you tried getting her to eat _____?" does it not dawn on them that I have tried every food appropriate for a child her age? I hear this dozens of times a day. Or do they really think that they are the first to suggest I try Cheerios?


And why are Cheerios treated as an almost mystical food that all children must eat and that they can cure just about any feeding issue? Ahhhh the frustration. Of course if I act snarky, then I am the one being insensitive to the person making the Cheerios suggestion.


I am tired of Eliza being compared to little Johnny, or the neighbor's little Janie who is a "picky" eater. First of all, to be a picky eater implies you eat something. The amount of yogurt Eliza consumes is negligible. You cannot be a "picky" eater if you are a non-eater.


I am also tired of people trying to alleviate my concerns by telling me tales of some child they know of who, at 5 or 6 years old, "eats nothing, just formula." When questioned, "eating nothing" really means the kid eats 4 Chicken McNuggets and not 6 Chicken McNuggets. Because as those of us who have a child who really doesn't eat know, that 5 or 6 year old would long ago have been tube fed if all he lived on was formula.


These are the same people who also want to alleviate my concerns by telling me that Eliza really isn't that small (she is 18 months actual, 14.5 adjusted and 6 month size pants fall off of her). Invariably there is some child they know who is "tiny." But as with the "picky eaters" when questioned I find out that these babies are 2 or 3 pounds heavier than Eliza. Since she gains about 4 ounces in a good month, it would take her 8 months to gain those 2 pounds.


I know that all of these folks are well intentioned and have Eliza's best interests at heart, but sometimes it would just be nice to have someone say "wow that really stinks that Eliza doesn't eat" and leave it at that.


Photo: Eliza Grace At 18 Months

Milestones

There are the usual milestones that parents count in the first few months of a child's life, when they smiled, picked their head up, rolled over, slept through the night, to name a few.

The milestones for preemies and micropreemies are a bit different. Milestones may be the wrong word to describe some of these events since some of these "milestones" are monumental and others are things that other parents just take for granted, like the day they first held their baby. For some of us, that day comes long after the day the baby is born.

Since this is a bit of a "catch-up" blog, Eliza's milestones that everyone may has missed are:

April 10, 2006, first held by me, 25 days after she was born;

April 19, 2006, reached the goal weight of 1000 grams;

May 13, 2006, reached 3 pounds;

May 14, 2006, was finally weaned off the ventilator to BiPAP;

May 21, 2006, weaned off of CPAP;

May 24, 2006, drank from her first bottle;

June 23, 2006, came home from the hospital;

August 30, 2006, weaned from oxygen.

Eliza's other, more usual milestones came much later. She rolled over for the first time on January 9, 2007; crawled for the first time on March 14, 2007, the day before her birthday; stood up for the first time on April 5, 2007 and first walked on August 17, 2007, just after she turned 17 months.

Photo: Eliza Grace at 11 Months Old

Life at Home

Eliza was discharged to home in late June 2006. Since we live in a city, she got her first stroller ride on the walk home on a beautiful day. She came home with oxygen and monitors, but none of that seemed to matter much since she was finally home. It was so nice to just have the two of us home. I declined to have any visiting nurse service because after 100 days I wanted to just be alone with my child. The NCCU nurses called regularly the first few days to see how we were doing and provided some much needed advice, like leaving the radio on because she wasn't used to the quiet.

Eliza's first year at home was filled with a multitude of doctor appointments, a small pharmacy of medications, one very nasty week-long hospital stay and a therapy schedule that requires Eliza to have her own calendar. Despite all of this, I have tried to give Eliza as "normal" a life as possible. Luckily she weaned off oxygen which allowed her to go on vacation to the Caribbean to see our family, not once but twice. She goes to the park, the zoo, the beach and spends weekends with her Nannie and Grandpa. Although I am very cognizant of keeping her healthy and avoiding "germ-fests," I see no reason to keep her under lock and key and have her live in a bubble. Just the simple act of taking her for a walk puts a smile on her face ... and it makes all the people she waves at smile too (she is quite the little waver).

Her days are not though filled with playdates and music classes. Instead her days are filled with physical therapy, occupational therapy, speech-feeding therapy and time at a sensory gym. Thanks to her wonderful therapists Eliza has made amazing strides, especially in her gross and fine motor functions. Her eating is another story. At 18 months actual age, 14.5 months adjusted age, Eliza's diet is limited to Pediasure with Polycose and four ounces of yogurt. She has a sensory processing disorder which makes eating not the fun experience it is for the rest us. SPD is just one more in a long list of acronyms that Eliza has had attached to her, IUGR, SGA, RDS, PDA, AOP, ROP, BPD a/k/a CLD, the list goes on. She has managed to rid herself of most of these, and with time, SPD will also hopefully be just a memory and a note in her chart.

Photo: Eliza Grace at 6 Months Old

Surviving the NCCU

During Eliza's first month in the NCCU the only people I really spoke in depth to were her nurses and doctors. The other parents in the ICU room at the time had all gone through their own special versions of hell. Two had lost a twin, one lost her surviving twin, another barely spoke English and was just trying to understand her son's condition. They all shared concerned looks and quiet hellos, but had too much to deal with to worry about making me feel welcome in this strange place.

After Eliza's first month though a new couple arrived with their son, a full term baby who was a bit of a medical mystery at the time. We exchanged a few glances at first, I shared what little NCCU knowledge had I gathered (critical things like which bathroom to use!). After they settled in and we all realized that we were there for the long haul, we formed a friendship and a bond that truly helped me stay sane during those long 100 days. When people ask me how best to survive the NCCU I tell them to look around the room, find the person or people who are in the same "boat" as you and try to form a friendship since those people will offer you a unique kind of support that no friend or family member can provide, since they really do know what you are going through. Friends and family can provide shoulders to lean on but they can only guess what it is like to not know if your child will survive the night or what it is like to leave your child in the care of others when that baby should be home with you.Having formed a friendship in the NCCU allowed the three of to almost normalize our existence. We visited our children at the same time, gossiped about the same things (usually the annoying parents whose children were in the NCCU 48 hours but whined incessantly about everything), complained about the same things and most importantly shared out victories, like being weaned off a ventilator. Strange as it may sound, there were even things to laugh about now and again in the NCCU and it was so very, very good to have someone to share a bit of black humor with.

Eliza's "good days and bad days" continued but eventually the good days outnumbered the bad days. When her discharge date came in late June 2006, I was ecstatic to be bringing her home, but oddly saddened to leave what had become our little NCCU family. My friends and I had agreed we would try our best to arrange our babies' discharge dates as close as possible, and luckily they were able to leave a week after Eliza was discharged.

Photo: Eliza Grace 75 Days Old

How To Crochet Your Way Through Your NCCU Stay

I happen to live within walking distance of Eliza's NCCU. This was a blessing and a curse. A blessing because I could spend 20 hours a day in the NCCU and a curse because I could spend 20 hours a day in the NCCU. After about a week of spending 20 hours a day in the unit, showing up at 3 am, etc., one of the neonatologists took me aside and mentioned that I may want to consider going home to sleep, eat and bathe. I asked him what made him think I needed to sleep/eat/bathe. He very nicely informed that I was starting to look like a homeless heroine addict, red eyes and all. It was some of the best advice I had in that first week, and I managed to sleep a good ten hours without even moving. After that first week of no sleep I tried to always get a few hours sleep at night so I could better focus on Eliza.

During those first few weeks of not knowing from day to day how Eliza was going to fare, getting the middle of night calls that all was not well, being asked to sign consent forms for medications and procedures that were a blur, I began to have anxiety attacks. My OB prescribed xanax which helped immensely. My mother of course had her own ideas of how to deal with anxiety. My mother's answer to stress was to crochet. To her, crocheting was far superior to any drug for relieving anxiety. It didn't matter what you crocheted, because it was the calming repetition of crocheting that was the important thing. And so I began to crochet the blue blanket (yes Eliza is a girl and should have had a pink blanket, but blue wool was the wool on hand at the moment).

For the first few weeks I sat by Eliza's isolette crocheting like a mad woman. Unfortunately I could only crochet one thing, a plain, simple blanket. Although the nurses and I now laugh about how big the blanket got, the blue blanket actually served as a catalyst to making friends with the nurses and some of the other parents. With the ever-growing blue blanket there was always going to be something to talk about, other than Eliza or the other babies and their problems. Of course, after Eliza's discharge some of the nurse's confessed to thinking I was a bit batty for my 8 hour crocheting marathons at Eliza's isolette.

I finished the blue blanket shortly before Eliza's discharge. The blanket grew as Eliza grew. Eliza still has her blue blanket and one day I'll tell her the story of why a little girl has her very own blue blanket.

Photo: Eliza Grace 8 Days Old

There Will Be Good Days and Bad Days

After a few weeks as a permanent fixture in the antepartum ward, and after more bio-physical sonograms than I can recall, the day came when Eliza had to be delivered. The blood flow to her brain was too restricted and her life was at risk. At 1 pm my OB called to say that I would have a c-section that day. Although I knew this was coming sooner rather than later, it actually took me by suprise since I had really convinced myself that since I was feeling better, I would make it to 30 weeks. Pre-eclampsia and HELLP syndrome can be deceiving. You would assume that you would feel awful, but that is not always the case, and since I felt reasonably well I was really shocked by the news of my impending c-section.


Although I was 26 weeks and 4 days pregnant, Eliza was the size of a 24 weeker due to the IUGR. She was delivered on March 15, 2006 at 10:52 pm. She weighed 1 pound 4 ounces and was 11.5 inches long. I heard her cry and saw her tiny, tiny face after she was all bundled up for just a few seconds. My cousin, who was there with me for the delivery, told me how "great" Eliza looked for a micro-preemie. I wanted to believe her because she does have a wealth of knowledge and experience as a NICU nurse, but all I could think was "she has to be kidding, nothing this small can survive." It was another 14 hours before I saw Eliza again.

My mother and I stayed in the recovery room till dawn when I was moved to my room, a private room near the NCCU which spared me having to listen to the joyful sounds of the parents of the healthy full term babies. I don't think anything could have prepared me for how tiny Eliza was. My hand could cover her entire body. She was intubated, her skin was almost burgundy, she had a PICC line, her eyes were covered to protect them from the billi-light and lines were coming from her abdomen. For the life of me I couldn't figure out why these lines were coming from her naval, until the nurse explained that they place lines in the umbilical arteries and veins since they can't put an IV in a baby this small. The nurses assured me that Eliza was "doing well" and all I could think was if this was "doing well" I would hate to see their idea of "not well."

Later that morning one of the neonatologists came to see me. This was the first of many times I heard the "there will be good days and bad days" speech, a speech I came to hate over time. Before Eliza was born one of the other neonatologists had spoken with me about what to expect and had estimated that 26 to 27 weekers have about an 80% chance of survival. 80% hadn't sounded too bad. So when this new neonatologist came in after Eliza was born and told me she had a 50% chance of surviving I was kind of outraged ... how dare he take away that precious 30% chance of survival! As the weeks progressed though I came to really appreciate his honesty about Eliza's condition. It is too overwhelming so soon after delivery to hear the litany of things that can, might or will go wrong but you have no choice but to listen. You are forced from the very outset to make a multitude of decisions about your child's care, this at a time when other parents are simply trying to decide what to name their baby.

And so began Eliza's 100 days in the NCCU, some of them good days and some of them bad days.

Photo: Eliza Grace 4 Days Old

And So Began My Extended Stay on the Labor and Delivery Floor

I am a single woman who only wanted one thing in life, a baby. After many years of trying to have a baby, with ups and downs, steps forward and steps backwards, Eliza Grace was conceived via IVF in September of 2005. It was to be a wonderful pregnancy, or so I thought, despite being on a small pharmacy of drugs to maintain the pregnancy. All was going well until a routine visit to the OB in January 2006 revealed that I had slightly elevated blood pressure. With medication my blood pressure remained reasonably normal for a few more weeks. Then in February 2006, my blood pressure slowly crept upwards. Bedrest at home and medication were no longer controlling it and after a visit to my OB I was sent off to the hospital. The original plan seemed to be to get my blood pressure under control and discharge me to home on bedrest for the remainder of my pregnancy. Within a few hours it was very apparent that this was not going to happen, ever.

Looking back, initially I was not too alarmed about my admission. However as the hours dragged on and as my blood pressure kept going up to a high 215/125, I realized this was not normal and that things were never going to be "normal." Thankfully I was surrounded by good friends and my cousin, who is also a NICU nurse. I do not know what I would have done without these women by my side, especially my cousin. As the evening progressed I began to vomit and shake uncontrollably and had a crushing headache worse than any migraine I can recall. I think it finally dawned on me that all was not well when I saw the resident outside if my room holding his head in his hands. This is never a good sign.

The OB explained that at 23 weeks with IUGR (intra-uterine growth restriction) that the baby's viability was questionable. I was given steroids to help develop Eliza's lungs but needed to hang on at 24 more hours for the second round of steroids. Eliza was not even a pound according the ultrasound. I was given Demerol via IV for the headache pain and Magnesium Sulfate to prevent seizures and hopefully to help lower my BP. I was moved to Labor and Delivery and began to wait. I was surrounded by caring nurses and doctors who all tried to reassure me that all would be well. I am not sure I really believed them but somehow by morning my BP was down to a reasonable level and I and Eliza were given a brief reprieve from an early delivery. And so began my stay on the Labor and Delivery floor.