A Day in the Life of My Little Tubie

Staying at home with Sweet B has certainly not been what I expected it to be. In my days of teaching, I always daydreamed of being a stay-at-home mom. Play dates, trips to Gym.boree music class, and "Mommy and Me Yoga" would be how I would spend my day. This isn't how it turned out, and instead we spend our days going to various therapies and doctor's appointments, but I wouldn't change a thing. Every day I get to bear witness to the greatest miracle that I have ever seen, and that miracle is the life of my beautiful daughter. When I see her pulling herself up, I realize that the hours and hours of physical therapy done at home and at the center are paying off. Right now I'm watching her scoot to try to play with the TV and stereo buttons. I will have to go and get her before she gets there. She will cry and throw a mini tantrum but this will only show how tenacious she is. Just like she's been since the beginning. How lucky am I that I get to see this daily??? Every day we marvel over just how miraculous she is, and I believe that this is a special gift given to the parents of children with special needs.

In the midst of all of this marveling, there are the daily nitty-gritty things that must be done. I'm going to try to show you an average day here at Sweet B's home.

7:30-We unhook Sweet B from her nighttime feeding pump. She plays. I change her into her day clothes and give her her reflux medication. We either go to physical therapy, have occupational/feeding therapy come to us, or her teacher comes.

10:30-Morning feed. I get her tubing and formula ready as well as the food that I will attempt to feed her. I begin the meal with oral stim.ulation by brushing her teeth or something. I attempt to get her to eat and drink. I fail miserably as she refuses to swallow or spits the food out of her mouth while laughing. I continue to try for 5-15 minutes. Finally I give up in frustration as she just won't swallow. I begin her tube feed. During the feed I pray that she will swallow what she has pocketed under her tongue, without gagging and throwing up her tube feed. I bolus feed her 2-4 ounces depending on how badly her reflux is affecting her. I vent her periodically in hopes that it will help her not to puke. She has periods where she will throw up every feed, and I have to measure what she threw up, and give it back to her (new formula of course!). After her feed I race to get her to her walker/turny play thing so that she stays upright while digesting her food. She stays in this thing for 15 minutes, at which point I take her out, take off her bib, and let her play.

11:30-Therapy either at the center or I do therapy myself with her at home. I might do another 2 ounce tube feed if she threw up a lot during the first feed.

1:00-nap time. This takes 20-45 minutes to get her down. Before I had her, I wondered if I would be a "cry it out" mom or an attachment parenting mom, where I hold her until she is asleep. I never had to make the decision because it was made for me. I kiss her, cuddle her, and lay with her on top of me until she is asleep. If I don't, she screams bloody murder and throws up all over herself, negating the feeds that I've given her. It's painful for her and it's stressful to have to get the food back into her. We tried it a few weeks ago and after ten minutes we realized that it was not worth it. So I enjoy the time with her and breathe her in. I love this time and I won't have it much longer.

3:00-B's up! Another oral feed attempt at which I fail, and a tube feed!

4:00-Therapy, play, read books. Whatever we do generally has some purpose to help her feeding or fine motor skills or gross motor skills.

5:30-Dinner for hubby and I. I've been cooking a lot. This is big for me since the kitchen used to scare me. We give reflux medicine to B.

6:30-Another oral feed attempt at which I fail. I tube feed her 2-4 ounces.

7:30-Often she gets her bath where she plays for about 30 minutes while I watch her and shoot video of her being silly and send it to my mom and dad. I read her books or we cuddle on the couch. I do more physical therapy with her.

8:00-Another tube feed but no oral feed attempt this time. We brush her teeth or put something in her mouth so that she associates a full stomach with something in her mouth.

8:30-Bed time. I put her down and it takes approximately 20-45 minutes again. More snuggles and kisses.

9:45-Hubby makes her formula for her nighttime feed. He quietly goes into the room and hooks her up to her feeding pump. He sets the rate of feed depending on her reflux that day. Tonight he will set it at 42 mils an hour. (30 mils is an ounce).

12:00-Hubby is a night owl. He puts more formula in her feeding bag and goes to sleep. Our sleeping arrangement is different. He sleeps in the bed with her while she is in a reflux recliner contraption. I used to sleep with her but I wasn't able to sleep. The pump is a bit scary to me and I am constantly checking on her. So after trial and error, we realized that him sleeping with her is the best arrangement. (Odd, I know. But you do what you have to do, and I have to be awake the next day in order to care for her.) During the night he might have to lower her rate of feeding if she is coughing and having reflux. He also might have to raise her recliner up.

7:30-Sweet B wakes up and hubby drinks a 5 hour energy drink as well as coffee. Our day starts again.

There are a few things that you must know:

*The timing of Sweet B's feeding is very important. I am constantly on the watch for reflux and throwing up. When we are lucky we can get by with 3-4 tube feedings a day and the pump at night. When we aren't lucky or when she's sick or teething (which is a lot of the time) I have to do 5-6 tube feeds a day and the pump at night.

*There are many times when I have to feed her in the car or other places. This is a real pain and I would love to just be able to give her a sippy cup and tell her to feed herself. The public feeds are the hardest because setting everything up is a real pain.

*Leaving the house to go to her therapies, doctor's appointments, or simply shopping requires that I always pack her tube feeding extensions, bottles of formula, water, g-tube pads, multiple bibs, and all of the other normal baby items that moms bring. I have been stuck somewhere without her tubing, and it's not a good thing. One time I considered using a straw. (It wouldn't have worked :)

*I must continue to try oral feeds at least 3 times a day or I risk her becoming even more orally averse. Of course every time I orally feed her I pray that *this* is the time that she will eat. It never happens, but there's always hope!

*My husband is the best husband in the world. Seriously. How did I get so lucky? I've been married to this man for almost fifteen years. We spent most of our marriage without a child, by choice, as I wasn't ready for one until a few years ago. We've had time to settle into our routine, and I had always wondered how a baby would impact him. Well, I have my answer now, and this little girl has him wrapped around her little finger. He turns to mush with her. I cannot imagine having a tube fed child with all of these appointments, without having a partner to help. There are single women who do this every day, and they definitely have my utmost respect. My husband listens to my needs and will do the oral feeds for the day if I simply cannot take it. He makes me leave the house when he sees that I need distraction. He feeds her dinners when I need him to. We know that it is important that each of us get breaks. He plays tennis several times during the week and weekend which allows him to get out and participate in his favorite activity. When one of us is tired, the other one picks up the slack.

Well, there's a glimpse into our daily life. It's certainly not glamorous, but I love every second that I get to spend with her at home.

It is my belief that in a few years the therapies will be over and she will be eating orally, and I will miss the days of spending my time with this precious little soul. She will be off with her friends or at her ballet classes and I will miss the times when I held her on the couch and kissed her as I tube fed her.