Sunday, January 17, 2010

Nana and Papaw; Kyra; skin, new button, and upcoming procedure; hope for easier feedings; Dad solo

Last week, my mother and step-father visited. She hadn't seen Loki (in person: there have been video chats) since the week he came home, and he had never met him. Loki was immediately warm towards them, without any stranger anxiety. Perhaps he recognized his Nana and Papaw from the video chats, or could just feel the atmosphere. It was great to see them together, and hopefully it can happen again soon.

On their last day here, Mom's close friend Kyra arrived from the Netherlands for a week's stay. Coincidentally, she was also last here when my mom was here and Loki came home. She has already been a big help, such as watching him this morning so both Mom and I could get some sleep.

For a few months, we've been taping Loki's tube to his skin so that it doesn't slip out. But now his skin around his button is sore. Mom took him to the emergency room in San Francisco as a means of getting him to be seen by one his gastroenterologist, Dr. Perito. She gave us a prescription cream for Loki's skin and told us that we need to be careful continuing the taping. To that end, Loki will have the new style of button--a Mic-Key, which can lock the tube in place--installed at UCSF on Friday. This will require a quick procedure (not really a surgery, as there's no cutting). He does have to be put under general anesthesia most likely to get the old button out, but won't need to stay overnight. I have to work, so Mom and Loki may be joined by Kyra for this.

There is some good news in the feeding department. Until now, Loki has not been getting enough calories with his pumped formula and milk feeds. When we tried to increase the concentration or volume of feeds, he would throw up. Now, Mom is experimenting successfully with giving him a thick, high calorie mixture of rice cereal and formula via a large syringe. He is able to keep this down, despite each feeding being almost double the calories of the formula. We think this because it is so heavy that it can't come up. We then must give him extra water. Another advantage is that, when he is awake and moving around, giving him a few milliliters via syringe every few minutes over the course of two hours is easier than chasing him around with his pump on a pole. Plus, this is more like getting meals: he gets a few big feeds during the day, and little (if any) overnight. If this works out, Loki can get all his calories in five syringe feeds during the day, one pumped feed in the evening, and then an overnight pump of mainly water in order to keep him hydrated. We hope this will reduce his overnight fussiness, although so far this has not been the case. In addition we hope this will finally add some weight to his little body (he weighs 8.63 kg or a little over 19 lbs).

Monday evening, Mom, Kyra, Rebecca will fly down to the Los Angeles area where they will meet up with nurse Margaret (!) and go to Disneyland. Even better, Mom's cousin will help with admission and they will hopefully get a chance to see her and her family, as she works at Disney. This is exciting, as it is Mom's first vacation away from Loki. Myself, I am nervous about being alone with Loki. They will return Wednesday evening.

Nana and Papaw:


Three generations:

 
Happy with Papaw:

 
Mom is best:

 
With Dad:


Fam:


Reflecting:

 
Mmmm, paint:

 
Nom nom nom straw:

 
Smiles:

 
(Little) Big man:


11 comments:

Mascha said...

Beautiful pictures - as always. I haven't seen him in so long. Can't wait to see you all again.

Have fun in LA and at Disneyland and enjoy your break, mom.

I wish you that things will go smoothly with Loki at home on your own, dad. Holler, if you need help.

Love,
Mascha

Cheryl said...

Great news about the MicKey--so much easier...esp. for bolus feeds. I remember just carrying water and a tube to attach with water, and having it be so easy to give a quick "drink" of water. And, if he gets a 1.5 cm, 14 french size (you will learn, trust me), then I have a couple of FREE replacements and replacement extension tubes for you. The boy looks GREAT! If you need ANY help with the new tube, let me know...
Cheryl

Richard en Maaike said...

Ik hoop dat het een opluchting is dat de mic-key nu toch eerder komt. En laten we hopen dat dit ook echt een stap voorwaarts betekend! Het hele systeem is in elk geval al veel en veel beter. Goed om te horen dat de voedingen nu beter te behappen zijn, al blijft het natuurlijk een hele bezigheid.
Loki ziet er goed uit zeg, hij wordt echt een dreumesje nu. Zijn haar wordt ook mooi lang zeg, met van die mooie krullen in achter zijn oren.
Mom, geniet van je trip naar Disney land, wat zal het gek zijn om even niet met Loki samen te zijn, maar toch, geniet er ook van!!
Dad, enjoy your time with Loki and do things the way you want them to do, just find your own way (mom is not around, so she not watching you!, we all know moms can be very hard to deal with ;) ). I'm sure you will do well!! Have faith in your own style of taking care of Loki and enjoy your time together!
X Maaike

Naomi said...

Lijn, geniet lekker van je uitje! Mooie foto's weer, wat wordt Loki al een kleine grote man :-) Het voedingsnieuws klinkt ook bemoedigend.

liefs, Naomi

Janie said...

We miss you all very much already. Pictures are so cute. Have fun on your trip girls. Dad - you will do just fine!Hugs and Kisses...nana and papaw

Andrea said...

He keeps getting cuter! Those eyes and that smile Loki has is so vibrant. Ya'll look great!

marieke said...

This is very good news! Finaly no tube coming out, wet beds, no food in tummy and sore skin anymore.
Dear mom, enjoy your trip and give cousin a hug from me.
Dear dad, you don't have to worry about being alone with loki. You're a natural care taker with this little dude, I saw it myself.
X Marieke

berkeleygal77 said...

beautiful as always - and glad the little dude is keeping more food down!

rstiles said...

Glad to hear the feeding is getting at least a little better. Interestingly enough, he weighs almost as much as Milo does -- Milo weighed in at 19 lbs 6 ozs. just yesterday. It seems like he's been hovering around that weight for a while now despite eating pretty heavily. Loki looks great!

Best,
Rob

marieke said...

Lieve Loki,
Veel succes met je "operatie".
Dikke kus, XX

Anonymous said...

Loki looks great - just look at him go! He looks great. Big and strong. Kisses to him and to you guys. Courtney

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.