Wednesday, July 8, 2009

Obstacles

12:45 am: squeeze between open dishwasher and chair, walk around the edge of the table, do not bump into fridge, left around the table, bump into the bouncy ball, careful dad's bag on the floor on my left, turn sideways to fit between the high chair and bouncer. Left around the next corner, careful open dishwasher, clock on microwave still 12:45 am. Loki has been drinking for a minute. Just keep going. Around the table, in circles, ouch, hit toe on high chair, cat looks interested. Around and around until clock says 12:48, Loki stops drinking, back to bed.

3:07 close dishwasher, one less obstacle on our course. Walk around the table, careful at the high chair, toe still hurts. Loki drinks on left side, minutes are much longer at night. Can walk four circles around the table in 1 minute, something is not right with that microwave clock. Bouncy ball in my way again, push with knee while continuing to walk, otherwise Loki stops drinking. After what feels for miles Loki drinks for 13 minutes. Completely asleep. Back to bed.

5:10, is it getting lighter already? Walk around the table, getting used to obstacles, definitely easier with dishwasher closed. Loki is drinking with a strong suck on right this time, minutes seem to go faster again. Walk with brisk pace around the table, venture out to the living room area, make sure to see the clock when Loki is done. At 5:23 Loki has sucked for 8 minutes.

Total minutes of drinking 21, total number of feeds 3. Uhm, does 21 count as 1, 2 or 3 feeds? Who makes up the rules? I guess I do. Let's make it 2 feedings of 10 minutes each. Not much but oh well.

Get the picture? That's what the last several nights have looked like. Loki's reflux has worsened and he can no longer drink while laying down.

Loki continues to think it is fun to live up to his name. We cannot write a blog post bragging about improved eating and sleeping, or he will show us who is boss. As if we ever doubted that!


After last update, Loki's eating and sleeping went downhill again, not eating much, closing his little lovely lips tightly before the spoon could enter with yummy food, and not opening his mouth for the breast. More crying, fussing and little sleeping, day or night. Wow, my world has become minuscule and overly focused on food and sleep. After a week of frustration he ate better again for the past three days, today no interest again. Luckily a little more sleep than the two, three hours/night of last week. Although dad cannot yet feed Loki -we're working on it- he does wake up in the morning to take Loki into the living room so I can sleep for an hour or so. That helps.


I am so happy and grateful for how well Loki is doing, yet the constant struggle for food and sleep is rather challenging. I understand the families I have worked with so much better and much more profoundly than I could have ever imagined. It is so primal to want to feed one's child. Still getting comments from strangers on the street "aw, he's so tiny, when was he born?" geesh, what to answer? Even 5 months, his current adjusted age, sounds unbelievable with his current size. Still fitting in newborn clothes.

Oh, how I wish this boy would enjoy his food at least half the time so he would gain some weight.

8 comments:

Mascha said...

Oh, my dear. I hear your frustration. I wish I had words of wisdom, but I'm pretty sure you have tried everything. I even feel short of words of consolation. I can only imagine how utterly exhausting this must be. I just hope Loki's smiles and giggles still keep you from total despair.

Just know that I feel for you and keep believing that some day this shall pass.

Much love,
Mascha

Richard en Maaike said...

Hey mom,
Wat een uitdaging, om ontspannen te blijven om die eet-, drink- en slaapmomenten. Wat zou het toch fijn zijn als we dat eens even van je over konden nemen. Maar de zorgen die je als moeder voelt, en de onmacht, kan een ander niet overnemen. Dat voel je omdat dat ook je grote liefde is voor je kind. Maar ja, dat is leuk gezegd, maar het maakt het er uiteindelijk niet makkelijker op. Ik denk aan je.
Kus Maaike

Elizabeth said...

Don't despair the strangers in the street!! Loki, albeit small, has been through more than most of us. His is a strong, fierce spirit - that his body will eventually catch up with! Your persistance and strength are models for us (and explain a lot about Loki too)! Our love, E & P

Cheryl said...

Today, Brianna had her g-tube removed. Two and half years of help with feeding, and CHO still didnt' want to remove it b/c she isn't gaining as much as when she was getting supplemental feeds. I had to insist, because it is time for her to take this on herself. This feeding stuff is such a big deal, and so hard. You don't want him to get too thin, but you don't want him to stop trying. Trust yourself to listen to that intuition inside yourself. Elizabeth is right--the strangers don't matter, what matters is how he is developingm his overall health, and how YOU are handling it all. There is so much that is going well, but the feeding and sleeping issues are very big. We went for the fundoplication, and it was tranformative for Bri--but she was 15 mos old when she had it, It was pretty amazing, though, to see her go from throwing food away angrily to happily eating. On the other hand, she never stopped getting food, and that is really important. YOu will figure it all out! Hang in there. This too shall pass.

circe said...

Veel liefs en sterkte! Circe

marieke said...

Lieve mom and dad,
Natuurlijk schrijf je zo dat het leuk is om te lezen maar de tranen springen in mijn ogen. Wat een uitdagingen steeds weer en de obstakels als afwasmachine en kinderstoel staan voor de obstakels in Loki. Ik heb de neiging om onbetaald verlof te nemen en een paar maanden naar jullie toe te komen. De zorg deels over te nemen zoadat jullie meer kunnen slapen maar ja, ik ben Loki's mama niet, heb geen melk en niet die binding. Lieve mom and dad, zoals al eerder geschreven wordt, natuurlijk gaat dit ooit over en groeit hij echt. Loki is zo sterk en hij ontwikkelt zich nog steeds zo goed, jammer de pammer wat mensen op straat denken over zijn kleine voorkomen! Hij is onze lieve loki-doki.
Heel veel liefs en goede moed voor jullie, dikke kusXX Marieke en Martin

Kyra said...

Lieve Lijn,

Ik kan alleen maar schrijven dat ik je lief vind en dat weet Loki vast oki.

Je hebt het recht om je hart te luchten, meer dan iemand. En als je dan jankt in de straat omdat ze hem mooi en klein vinden, soit! Je hoeft niet altijd sterke mama te zijn. Soms wilde je gewoon zelf nog zo klein zijn.

Kier

Suzan said...

Heel veel sterkte lieve mom!

Liefs,
Suzan

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.

Subscribe via email

Enter your email address:

Delivered by FeedBurner

Loki's Holiday Gift Drive

Please consider donating to Loki's Holiday Gift Drive for the Alta Bates Summit Medical Center NICU. You can donate by Paypal or credit card here:





Click here for more information, including how to pay by check. For all posts on the Gift Drive, click here.