Today I will give you a glimpse of what a typical day for us is like, except that we don't have typical days so how about yesterday. Yesterday started early with beeping, it is a sound somewhere between a commercial truck backing up and the fryer at your favorite fast food restaurant. Naomi's pump is alarming saying "No Food" or "No Flow In" or "No Flow Out" and I still half asleep try to diagnose and correct the problem without turning on any lights or making any noise and waking the kids. Thankfully this only happened once in the wee hours of the morning. Then we had the 5 a.m. wake-up call because Naomi's bladder is bursting. Most days she goes back to sleep and yesterday she did. I get up and unhook Naomi from her feeding pump often before she wakes up and flush her tube with an ounce or so of water. We get everyone up and the morning madness begins. Trying to get lunches packed, breakfast eaten, hair brushed, clothing on and appropriate footwear and outerwear for everyone. Naomi is served breakfast and yesterday like most days she refuses to eat anything. Some days she even goes as far as dumping the plate on the floor, those are not good mornings. We head off to school dropping the biggest kids at the elementary school and then taking Naomi to preschool. Naomi LOVES preschool. She has a mid morning snack there, which I am told most days she partakes in. I pick her up and noon and then we come home for lunch. Yesterday she cried and told me she didn't want lunch but when I insisted for the eighth time that she must come to the table, but didn't have to eat, she finally relented and came. When she saw that she could use mini cookie cutters to cut her peanut butter and nutella sandwich into any shape she wanted she was excited to make it stars and ate about 3 stars which was about 1/4 of the sandwich. She also took a few sips of chocolate milk and one bite of an apple. Depending on how she had eaten orally that day she gets a bolus feed by tube after lunch. Yesterday she got 6 ounces of blenderized diet (real foods we blend up in our high speed blender to be smooth enough to go through her tube). We feed this by 60 ml (2 ounce) syringe. The rest of the afternoon was spent playing, watching a movie and just being four. We have another battle to get her to the dinner table (she insisted her tummy was full despite it having been 5 hours since she last ate). Once there after carefully sliding her salmon off her plate she did eat about 1/2 cup of brown rice with Parmesan cheese and a few nibbles of broccoli. After dinner is some quiet playtime, a bath and off to bed. At bedtime, Naomi gets hooked up to her overnight feed which is 750ml (about 24 ounces) of pre-digested formula and a jar of baby food fruits or veggies. We tuck her in bed hook her up and pray the pump will be nice to us tonight and not alarm too many times.
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| Our crazy nighttime setup. Bethany in the top bunk, Naomi on the bottom, Mary in the trundle and hoping nobody trips on the tubes. And craftily having Mary's head at the opposite end as Naomi's so she doesn't tug tubes and cause huge messes overnight. |
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| Feeding her penguin and she gets a bit of water. |
This was yesterday, some days are more complicated as she isn't on any medications or in a vomiting episode right now and she is hardly getting fed during the day in hopes of better oral eating. Sometimes she is on slow continuous feeds when her gut is really unhappy and is hooked to her feeding pump 16-23 hours a day. Some days are less complicated as she did have a point in time where she only got a small overnight feeding.
But really other than being tethered to her pump at night and some short day time feedings, Naomi is a typical little girl. We do have to care for her tube which involves keeping it clean and dry, changing it out every 3 months, which we do at home and then we have to order her supplies as they aren't things we can get at the drugstore.
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| Posing for the camera! And no she didn't hurt her nose she just loves Band-Aids and attention. |
So there you have it a day with Naomi.
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