My development is behind. I can hold my head up for a little bit, but after a while it starts to flop backwards. I cannot sit up on my own. I can reach for toys but I do not pass them from one hand to the other. I can roll from my stomach to my side. I am content on my back and do not roll. I also do not crawl or creep. I do like to talk and am making different noises. I try to play as much as I can to work on my development, but I have to spend so much time eating and settling down after I eat. This really takes away from play time. I'm not sleeping through the night because my mom keeps waking me up to eat. Every three hours I have to eat. Sometimes I will get off schedule but then mom creeps up the following feedings (2 hours 45 minutes) to get me back on schedule.
I still get uncomfortable when I eat. Sometimes I do, sometimes I don't. When I do, it increases during the feeding. Sometimes I will have a big spit up and then I am very content afterwards.
My Average Day:
Mom wakes me up to eat at 2am. I'm tired and don't really feel like eating, but my mom keeps me on a strict schedule. By the time I start the bottle after it's preparation it's probably closer to 2:30. My mom lets me eat what I can by bottle and then finishes through my g-tube. At this feeding, I usually eat about an ounce by bottle and then three by tube. I fall asleep while eating on the tube. Mom starts to fall asleep too, but the beeping noise of the pump wakes her up to finish the feeding by flushing the tube. The feeding ends at 3:30. If mom puts me right to sleep after I eat there's a good chance I will spit up so mom holds me for 20 minutes. After this, I usually decide to stay awake for a while. Dad holds me at about ten of four, so mom can get an hour of sleep before my next feeding. During this time, I am usually quite talkative while dad wants to dose off.
Dad tries to get mom out of bed at 5am. Fifteen minutes later, mom gets out of bed to make me a bottle. We repeat the same procure as my 2am feeding, except after this feeding I'm usually a bit sleepy. Mom and I usually fall asleep around 6:15 for about an hour. During this feeding I have a small spit up. Mom estimates this to be around half an ounce, or fifteen millileters.
Morning preparation involves waking up my big sister and we start to get ready to go to daycare. I get very excited when Catie comes down the stairs and says "good morning, Emma". I have big smiles for my big sister.
At 8am mom feeds me and then we're off to daycare. I don't usually eat much of this bottle, but I also don't usually spit up much at all with this bottle. At daycare I have 2 bottles, usually I will eat the first one entirely by bottle, and the second one I start by bottle and finish using the pump. I usually have at least one spit up during my time at daycare.
Mom picks Catie and I up at 4:30, just in time to get home for my next feeding at 5pm! After this, another little nap and some play time before my 8pm feeding. I usually eat about 2 ounces by bottle and then fall asleep during the tube feeding.
One more feeding at around 11pm to finish off my day. As usual, another spit up.
It may sound like all I do is eat and spit up, but I do get some chances during the day to talk, play, sleep, and snuggle with mom and dad. I don't get as much time to play as a lot of babies my age because it takes me so long to eat (40 minutes to an hour) and then I need to be held upright for a while so that I can try and keep down my food.
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