Sunday, August 2, 2009

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.


Cheryl said...

Well, I hope Loki had fun with his uncle and cousin while you got out...this tube stuff is so very challenging. Have they talked about an all night slow drip if he's having digestive trouble? I HATED IT, but looking back, I do think it helped her stomach settle, and handle bigger bolus's during the day. At any rate, glad to hear the rascal is growing, developing, and actually taking one real nap. Every little step is a big one! Sending a hug and imaginary double latte to you. Bri is better, and if you would like an hour to yourself next Monday, let me know and I'll come Loki-sit anytime between 10 and 2. And thanks for the DDS report--if you had not stayed involved with Bri during her time with Angie, I think she would have lost even more ground==plus your input into just understanding what the issues were and what to focus on was very helpful to me--for those who don't know, Mom was my child's Infant development specialist==and she was FABULOUS. That other children and their families might not get this help is so terrible--and so very shortsighted.

marieke said...

Ja, ik kreeg al door dat California enorm gaat bezuinigen op gezondheidszorg. Wat een geluk dat Loki zo'n super mamma heeft die hem goed kan opvoeden, begeleiden en helpen ontwikkelen.

Voor nu dus best afzien voor jullie met die nachten. Als het goed is gaan jullie morgen naar Fish, wouw!! Geniet er enorm van ok?!?!

Dikke kus ook voor de rode tomaat X

Richard en Maaike said...

Wat fijn dat Loki nu een keer in zijn bedje kan slapen. Neem je zelf die tijd dan ook even om tot rust te komen? Ik hoop natuurlijk van harte voor jullie dat het, tegen de tijd dat wij er zijn, beter gaat. Maar weet dat we ook komen om te helpen en te ontlasten! Kus Maaike

Cheryl said...

So it occurs to me to ask: Are you getting respite care through RCEB? You should be. Call if you want more info.

Mom said...

Thanks Cheryl!! Did not even think about that, wow!! Usually one of the first things I mention to parents! Also, still like to stop by on Monday?

Cheryl said...

Yes,subject as always to the unforseen! Isn't it funny how we can do this for a living and it is still completely different when it's us? Respite care could pay someone you choose and train, or someone with tube experience, just to give you a few hours a week to take a breath...I could not get it until Bri was adopted, but when she had neurosurgery, it was a lifesaver to be able to pay Morgan to help out.

About Loki Sky

Loki Sky is a special little man. He was a very early micropreemie, weighing only 610 grams (1 lb, 5 oz) after 24 weeks, 3 days gestation, born to an American Father and a Dutch Mother in Berkeley, California on October 18, 2008.

On January 11, 2009, while still in the hospital NICU, his one kidney stopped working. It was repaired after three surgeries. After spending time in three hospitals in three cities, Loki came home on February 17. He struggled with eating, and then stopped in July, leading to 8 days in the hospital, a failure-to-thrive diagnosis, and a NG feeding tube. On October 10, a minor surgery installed a G feeding tube. Another procedure replaced it with a new one, and then again with a Mic-Key button in Jan. 2010.

In August 2010, he and his parents moved to the Netherlands.

Read about his first name.
Read & hear about his middle name.
See photos.
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