Home With Tube

Home with the tube has been an interesting adventure so far. It is not surprising that Loki likes to pull the tube. He has done so completely two times, and almost all the way numerous times. He is minding his business, playing in the chair, rolling in his bed, angry in the bouncy seat and all of a sudden there it is..... the sound of coughing, gagging and sneezing. Sometimes we run over quick enough to prevent the tube from coming out all the way. Sometimes the little trickster is too fast with his little pinky finger hooked "safely" into the looped tube near his nose. Either way, we are in for some screaming and big hugs for consolation afterwords.

Putting the tube in has become "easier" and is still very challenging at the same time. Practically, I am getting the hang of it. Emotionally, it is far from a fun experience. It is very uncomfortable for Loki, especially when the loop keeps popping out in the mouth, rather than down the esophagus. It takes two people, a swaddled little prince, a tube, Tegaderm (tape to keep the tube in place), duoderm (skin protecting tape), stethoscope, syringe, alcohol wipe, and a whole lot of love, dedication and hugs. Best way to get the tape on? Lots of firm kisses on the cheek! Poor little guy turns red like a tomato from screaming his lungs out!

Although we are very relieved to know Loki's precious body is well nourished and his kidney well flushed, the actual schedule of the feedings is pretty draining, not in the least because Loki has gotten much more colicky again with the extra calories. He started on 27 calories per ounce of breast milk fortified with NeoSure. Basically, he had the same response he had in February. At our follow up appointment last Friday, we were sent home with Neocate. This has worked in the past, but for now Loki remains crampy and cranky overnight, with the wonderful side effect of little sleep for Dad and Mom. We are sharing the overnight duties and I am very grateful for that. Dad does have to go to work, but nevertheless unhooks the pump and cleans it out after the two overnight feedings. I change diaper, get milk warming and pump set up and then breastfeed (yes, it is the only oral intake at this point in time...???!!) before hooking Loki up to the pump. We have become pretty smooth, but we do not sleep more then two hours at a time, usually much less due to the cramps. WOW, we thought we had kinda been there.....

Daytime naps are much better. He actually sleeps between 45 minutes to 1.5 hour at least one time per day in his bed, after an initial 30 minutes in mom's arms. That is exciting!!

Loki is thriving well on the extra calories and already gained between 5 to 7 ounces, depending what scale to trust. He looks more sturdy and solid and is even more alert to his environment and when exploring toys.

Uncle Brent (Dad's brother) and Alexander (Loki's cool, almost 10 year old cousin) are visiting. It is very fun to have them around. Uncle Brent baby sat for a few hours Friday night, and tonight Alexander and I are going to the movies!!

On a less exciting note, due to budget cuts and crisis the field of early intervention is about to be hit very hard. If Department of Developmental Services is following through with their new proposals Loki and many other children will no longer receive services to ensure they catch up by the time they go to school. In Loki's case, I am not too worried (although agitated) because I happen to be an infant development specialist myself. However, the implication for thousands and thousands of other children is simply devastating. I also suspect that the eventual social and financial implication of this for California will be much more challenging than the DDS is able (or willing) to admit. Many problems will go unnoticed until children end up at school, when those extremely precious first years of brain development are missed.

For those interested please see the DDS web page.

And by any means, feel free to share any thoughts, especially as to how DDS can manage the new budget without cutting this many crucial services.