Saturday, July 25, 2009

Hospital Day 8: Almost there...

Loki will probably be discharged from the hospital tomorrow. He has been fed by NG tube + pump for 48 hours now. He gets thawed breast milk, fortified with NeoSure to 27 calories per fluid ounce. Beginning yesterday, his mood improved and he began to take the feedings without much fuss. He has not gained weight yet, which the doctors want to see, but that can take a few days.

We will still do more follow up exams. Loki's esophagus will be viewed with a scope camera soon, and he will undergo the MAG3 scan to check out his kidney function on August 11. He will also have his blood and urine tested in a handful of weeks.

In order to go home, we must know how to care for an NG tube, including putting one in. Today, Mom inserted her first NG tube. It was a bit crazy! Loki was screaming, of course. But once she got it going, it slipped right in, and Loki calmed down soon after. Obviously, she is a Super Mom.

The feeding by NG tube and pump is very time consuming. The entire process takes almost one and a half hours, and is done every three hours. There is work during the first half hour and the final fifteen minutes. Thus, there is a wait of almost an hour in the middle. As you can imagine, this is draining, especially overnight. Hopefully Loki won't be on the pump for more than a couple weeks: As his stomach adjusts, he will be able to take in the food faster. Eventually we'll just use gravity, without a pump.

Mom is off sleeping, and I have overnight duty. It will be tough, but hopefully our last!


Cheryl said...

Don't worry--I know the beginning is so rough, but soon, Loki's feeds will go much more quickly. This is a transition period. Amazing Mom got that tube in--it was pretty intimidating to me at first. The transition to the gravity feed was HUGE--life got so much easier! Maximum 20 minutes, done after each meal and two in was quite liberating. Sleep well, Mom, and Dad, I can ony say, rest if you can! Thinking of you all a lot.

Richard en Maaike said...

Het is wennen aan de sonde, en vooral in het begin kost het extra veel tijd. Maar vergeet niet dat je voorheen ook erg veel tijd kwijt was met voeden. En dit geeft uiteindelijk minder stress aan jullie allen. Natuurlijk hopen we met zijn allen dat het maar korte tijd nodig is. Of dat in elk geval de procedure van voeding geven iets sneller kan gaan (werken op zwaartekracht gaat inderdaad een stuk sneller als hij dat kan verdragen).
Bedankt voor het compliment Mom ;)
X Maaike

Kyra said...

Well, it does feel intimidating even reading about having to put the tube in makes me shiver. I cannot say that it is great or so, because you just have to go with what is decided best once again. I hope all will feel much better soon and you get rewarded by seeing your baby clear up and get bigger and healthier!

Love, big kiss from Lova and Muus and Erwin,


marieke said...

All words are said for many times now but I allways feel like wanting to support you 3, so....Again the words of comfort and support. Little Loki doki soon you can go home with mom and dad. I can imagine it's not a nice feeling, a tube going into your nose. But your super mom is doing the best she can:-)
Dad and mom, you are huge hero's and if I tell friends about you I feel so much pride!!! Hope to see you in fall.
Dikke kus, XX marieke. en een knuffel ook voor het kleine mannetje van oom Martin.

marieke said...

O, and what is gravity feeding?

Mascha said...

I can imagine how intimidating and daunting this must all be in the beginning. But knowing how you have mastered all the challenges that have come your way so far, I have no doubt you will very soon be comfortable dealing with this new step in Loki's growing and healing - and that is what he will do: Growing and getting a bit fatter. You will at some point remember his smiles and giggles and the love and support you are getting, and the scary moments will fade away. They will always be a part of your experience, but they will stop dominating your lives. And whatever you are learning in taking care of Loki will become 'normal' to you. The best you can do is asking for and accepting the help you are offered and lean on those who love and support you.

I wish you success with this new chapter of feeding and am sending you tons of positive energy and love.


Anonymous said...

I am sending lots of good thoughts and love your way! you and lijn are the best parents loki could ever have, and i'm always inspired by your strength and compassion. it sounds like loki will be able to go home soon, and i am sure that being home will make things much easier. loki's such a strong little guy, and i know he'll pull through this soon. hopefully all of the outpatient tests, scan and NG tube feedings will go well (I know they will!) and he'll soon be off the NGT. cheers to super mom and Nurse Lijn for placing the NGT - not an easy feat! i'll call you once you're home. i'm sending my love your way. xoxo courtney

Sahn Lee said...

She is undoubtedly a super mom.

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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