Sunday, July 26, 2009

At Home!

We got out of the hospital yesterday at 5 PM, home by 6:30. The pumping regime is quite exhausting. Mom and I alternated responsibilities overnight: I changed Loki's diaper, checked his tube position, offered the bottle (all refused!), and started the pump. This took 25 minutes, every 3 hours. Mom stopped the pump, cleaned the pump bag, and flushed Loki's NG tube. During the week, we'll trade these jobs.

The big drawback of pumping is that Loki can essentially not go out in public for more than an hour. Sure, theoretically we could stroll the farmer's market with the bag and pump on the pole, but that would be more trouble and more stares than it is worth. However, we can sit by our building's pool and hot tub, or go to a friend's house.

This brings me to our request. Because I go to work, Mom will be very much tied to Loki and to home during the week, even more so than before. Social visits during this time would be greatly appreciated. Bringing a kid is OK, as long as everybody is healthy. The pool here is nice during the afternoon!

To answer a question: A gravity feed (also called bolus) is done by putting the milk in a large syringe which is connected to Loki's NG tube and held above him. You can then leave the syringe open and let gravity pull the milk to his stomach, or use the syringe's plunger to give it a push. The pump is actually used to slow the feeding down, so that we don't put too much stress on Loki's stomach.

To move to the much faster, easier, and simpler gravity feeds, the pump is gradually sped up, reducing the time of each feeding. The doctors said to not do this until our appointment in a week. However, when we look back on the day the NG tube went in, there was little actual evidence that a pump is needed. We tried one gravity feed, and Loki was fussy. So the doctors said to use the pump. Yet Loki was still fussy! However, then the doctors said to continue the pump for a couple days in order for Loki to adjust, which he did. Thus, Loki's reaction to the gravity feed may have simply been his reaction to the food itself. We have decided to speed up Loki's pumps each day, and watch his response.

The best news through all of this is how Loki has responded. He is already much happier than before, talking and smiling more. He is also already looking larger, and gaining a bit of weight (80 grams (or almost 3 ounces) on his final hospital day!). And he is making some sudden developments. He sitting up for a few seconds while leaning on his hands, he rolls over both directions now, and he moves across the floor ( he lays on his tummy and pulls himself along the ground, pulling his knees under his booty and pushing himself forward with his feet).

Despite this, we have a different and significant challenge ahead: Loki must learn to eat again. As I mention, he is generally refusing the bottle.

Now, some thoughts from Mom:

Placing the tube is quite challenging. We have to do this ourselves every month or whenever it comes out. Loki pulled the tube out twice during his first 24 hours. I was trained by the nurses, but only put it in with supervision. It is a very uncomfortable process for Loki and he fights with all his might. We measure the tube from the tip of his nose to the top of his ear, than diagonally down to the navel. Subtract a centimeter and you have the correct length. Push it in the nose, which causes pain and some bleeding when not done smoothly, and tape it to the cheek. Push air in the tube with a syringe to listen for the "poof" with a stethoscope, indicating the placement is correct, and all done. Hopefully Loki won't pull the tube out before it expires!

Although a hospital stay is not fun, we were lucky again with most of our nurses. Loki was quite a celebrity in the hallways. Often we did not recognize the nurses but they knew him. One nurse who walked in to give a quick hand commented, "Oh, I know that little guy. That's Loki, he's the popular baby." Obviously, we're proud to be the parents of a baby with a fan club!


Nana and Papaw said...

Really glad to hear the little charmer is home. I'm sure he will be off the pump in no time and feedings will get easier. Hang in there Mom and Dad. We love you all very much...Nana and Papaw

Cheryl said...

Why don't you give me a call? I learned some very important lessons about the feeds relevant to your situation. I absolutely sped that pump up--after all, vomiting was not Bri (or Loki's) issue after all--I just found that realistically, I could not tolerate, nor could an active baby,or my poor sister trying to run a childcare program, a 60 minute feeding.Bri would cry, struggle to out of high chair, etc, after about 15-20 minutes. My feeling was that most babies can tolerate about 15-30 minutes max in a high chair, and I knew most babes get the bulk of their breast milk after 6 mos in the first 10 minutes...and so I did exactly what you are doing...sped it up by 15 ml (half an ounce) per hour, every day, until I could get 90 ml into a 30 minute max feed. I also found that I could have it start slow, at 60 ml/hr, speed it up mid way to 100 ml/ then back down to 60 at the end--sort of like a natural eating pattern with a nursing baby. Anyway, I learned to trust myself, and so should you. You can tell if they are uncomfortable almost immediatley. Also, I really do have the full kangaroo pump backpack, which allows you to tote him around in a baby carrier with the backpack on you, and give him a feeding while you are out and about...let me know if you want me to drop it off. The pole is obviously way too cumbersome.
I really apologize for the length of these posts--there is so much i feel I learned, and I guess I want to pass it on...take what is useful, disregard the rest! And of course, your docs have the final say...I just found I could explain my logic, and they realized I knew what I was doing. Also that I knew my own limits. so happy to hear Loki is doing so well!

Dad said...

Cheryl: We began at 105 mL over an hour. We ramped up today to that amoung in 45 min, which is 140 mL / hr. In a few days, we hape to advance that to perhaps 35 min... then 25 min... 15 min ... then bolus?

Kyra said...

Good luck you guys! Once again, I feel a bit sad not being around on your side of the globe, so if anyone feels, acts and looks a little bit like me, please visit and hug and give (germ-free) kisses to my vriendinnetje and her family!


marieke said...

Gelukkig heeft Loki een fanclub, kan natuurlijk ook niet anders, haha. Hij is de liefste en mooiste baby ever! Wat een geluk dat jullie mensen in je omgeving hebben die zo veel weten en ook meegemaakt hebben. Hoop dat het met de rugzak van Cherill lukt om meer naar buiten te gaan, dat zou fijn zijn. Kan me ook voorstellen dat jullie helemaal kapot zijn van alles wat gebeurt. hele dikke kusX

Richard en Maaike said...

Hey, jullie krijgen al een hoop goede adviezen. En hebben het lef om niet het advies van de dokter te volgen en gewoon jullie eigen deskundigheid in te zetten! Prima plan!!
Wat goed om te horen dat Loki nu al sprongetjes maakt. Zo fijn dat het hem zo goed doet. Dat eten komt vanzelf weer (nou ja, dat wordt ook wel weer werken voor jullie), maar nu eerst maar even genieten van het feit dat hij nu voldoende binnenkrijgt.
Ik ben erg benieuwd hoe ver hij al zal zijn als we over twee maandjes (yey!!) komen.
Dikke kus Maaike

Cheryl said...
This comment has been removed by the author.
Cheryl said...

Dad, that sounds about right to me. You just watch and monitor, and go with Loki's response. I also used to (without ever really asking, mind you) give a quick 20 ml's of formula, with 10 ml flush of water, just when we were about to go out and about and I thought we might go a bit beyond "schedule" for feedings. Just a little topper offer! Not gravity--just squirted in very slow 5 ml at a time little bits. You'll find your own I added probiotics and flax oil in a 5ml syringe after about a month...helped her skin not get so eaten up.
A final thing that I'm Mom already knows: Even if he isn't too interested in eating now, you are slowly stretching his stomach, so he'll experience hunger. Be sure to keep him included in all your meals, talk about how delicious things are, fill house with yummy smells, and offer food in a nonchalant way. I am sure Bri began to eat in part because she loved the older kids, and we made a game of exaggerating how delicious things were at the table--she's take a taste, then spit out, but eventually, even broccoli, carrots and spinach became part of her diet. VERY slow process, so be patient with yourselves (i know you already are with the boy!).

Richard en Maaike said...

Adding to the comment of Cheryl: Flo is a very normal developping boy, eating his bread and fruit very well, but diner is a BIG problem. Don't forget that a lot of 'normal' children have eating issues as well. Also frustrating (for us), but it seems to be normal and not a problem. Loki can also develop some favorite and non-favorite food. So be patient (think about Flo's video 'my hair wants to eat too' ;)
X Maaike

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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