Friday, May 29, 2009

Ups and Downs

Last weekend we hit rock bottom. Loki crying all day Saturday, mom crying part of the day, and dad? Well, dad was not crying. Loki was not eating well and not sleeping. The night had been horrible and during the day that juts continued.

Generally Loki takes two naps a day in my arms lasting from about 30 minutes to an hour each. When I put him down in his bed he wakes up within ten minutes, usually, and if not tended to quick enough he starts crying and does not quiet down until being held again. As you know, one to hours a day of napping is not enough for a baby. In addition, he does not sleep more than approximately a total of six hours at night. You would think I would know how to go about this after working with parents on sleep training for I don't know how long. One complication here, the good old letumcry trick does not work. Loki does not fall asleep within 30 minutes of crying, no matter how exhausted. Driving around does not do the trick, he just cries a little louder, and taking a stroll with the stroller is not his choice of relaxation either. Because Loki is too little already, we cannot let him cry too long because he looses too many calories. So, we have not been able to find the happy amount of tears before falling asleep yet. Thus, I walk around keeping the little monster asleep several hours a day. He also needs to fall asleep like that at the end of the day. Once asleep after 8 pm I can feed him and put him back in bed, usually without a problem. Strange little fella!

Eating, well....... We have been all over the place with that one. Last Saturday, as I said, we hit an all time low. Loki was constantly uncomfortable, very fussy, was hungry but did not drink. He arched his back, kicked his legs and hit his fists in frustration. Obviously the Prevacid was not working yet. I had not given him rice cereal for a few days because he started to dislike it. Since our new goal for eating was "have fun with it, whether you gain or loose" we decided to not push anything on him. An aversion to the bottle and pacifier is enough aversion for such a little guy. I think both dad and I finally realized that either he is going to gain weight, or he is not. Making him struggle as much as we have was not really helping the little booger.

However, didn't mean we could and should not reintroduce the rice cereal. So I fed him from a spoon on Monday, and all of a sudden he decided to be a big, cool baby boy. He ate 20 mls of breast milk with rice cereal and fortifier three times that day. Exclamations of praise and joy were probably heard three blocks away. Oh my, was I proud.

For now Loki has decided to just be inconsistent about the whole thing. One day he loves the cereal, the next not so much. We give it to him alternating between a little cup with a nectar or honey like consistency, and the spoon when the cereal is almost puree like. We practiced the cup first with our amazing Occupational Therapist Heather, for whom he drank a whopping 30 mls! So, some days he eats wonderfully well, the next day he hardly eats at all. But, he has eaten enough to have gained 4 ounces, which moves him up the preemie chart to the 10th percentile, and helps him inch away from a feeding tube and scary diagnosis of failure to thrive. Hope, hope, hope is felt again in our household.

In the mean time Loki is just developing up a storm. We have had several laugh/giggle attacks, where neither him nor I knew what we were laughing about. Actually, maybe he knew, I just didn't pay attention. Anyway, it is cute to hear him giggle, especially since we still have to work for it. He talks all day long, wonder who he got that from? With a remarkable variety of sounds. His favorite is hey hey or hi. But he also says aaiaaaiaai, sounding like an old Italian woman whose kids aren't listening to her. He said ahum twice, awie awie (pronounced rather French), and he certainly likes to practice his gadee gadee gadee or neeneneneneneee (that is the Dutch boy showing signs of disapproval). Anyway, I am interpreting up a storm, but hey, I don't sleep, I am rocking the little guy 20 hours per day and feed him at the same time. Seriously, I believe I have that right until Loki tells me otherwise! I promise, I will listen to him carefully for the signs.

Loki is quite ambivalent about the cereal:


Uhm, not so ambivalent anymore, time to stop:


Loki and Auntie Em, don't they look great together?


Loki discovering cause and effect with his wonderful early interventionist Barbara. Boy he was tracking that ball well:


Uh, mom, seriously, what are you doing?

6 comments:

Unknown said...

Hang in there!! You are all amazing and we have no doubt that Loki will be back on track soon enough... He is the guardian of mischief, no?

Unknown said...

Deep breath. Release. Again.
Time is going to lead you to a solution here. Sometimes it takes awhile to get to the bottom of things--but you will figure it out. Loki is getting the very best care in every way, and he is still figuring out how to "work" that darn body. It's tricky, no?
Postioning is important, being relaxed yourself is important (but how, with no sleep, is another challenge), and being a mini scientific investigator who just notices everything. It's funny too how the "numbers" become so important. My Morgan was a full term, healthy baby who was always in the 5th percentile for weight and height. All the way to puberty, when she became average. Just a very slow growth curve. It's so important that he knows you are there for him, reading his signals, even if they constantly change, right? When is the swallow study? That should help answer questions too. Heather is great--give her our love. How someone so slim can be so good at convincing babies to eat--it is a mystery...but I'm sending you good eating thoughts.

Suzan said...

Dear mom,

Wat een strijd en wat een plezier! Ik wens jullie opnieuw heel veel kracht en energie om alles vol te kunnen houden. Wat zou ik jullie graag komen helpen! Ondertussen geniet ik van de geweldige foto's van Loki. Wat een kereltje... Hij ziet er zo grappig uit. En wat kan hij al veel zeg!

Heel veel goeds toegewenst weer en een hele dikke knuffel van Phileine, die hier heerlijk zit te kuntselen tegenover me.

Dikke zoen,
Suzan

marieke said...

O my, the rollercoaster is obviously not at its end of the ride! But, great he uses my HEMA spoon....Hang on there little Loki, and mom, it's unbelievable how much energie you shows without sleep. I wish I could help out there. Hope Opa Ruud can when he comes over. The foto's are as allways so cute! Dikke kus voor jullie alle drie XXX

Richard en Maaike said...

Hoi allemaal,
Wat een zware dagen zijn het soms, he? De dagen met een huilend kind, na zelf al weken op je tandvles lopen zijn uitputtend. Ik vind het onvoorstelbaar zoals je het allemaal doet, ik ben vol verwondering, maar vooral vol BEwondering. Telkens vind je weer nieuwe energie om er weer vol tegenaan te gaan. Wat fijn dat Loki nu af en toe ook de cereal eet, dat zit er dan toch maar weer mooi in. Ik hoop dat je je ontspannen houding tegenover het eten weer kan oppakken en vasthouden.
Liefs Maaike

berkeleygal77 said...

I'm glad he's a hard rocker already (with the Led Zepplin shirt).

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.
See videos.

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