Thursday, April 30, 2009

Update

Just a few notes on the previous post and our Doctor's visits of today.

Loki indeed lost another ounce over the past two weeks. He is eating less and less on a daily basis with indeed much crying and discomfort. However, this did not start when we started working more on breastfeeding. The doctor wanted us to "push" the breastfeeding more because he seemed to do better with the breast than the bottle. This way he would get more milk, even though it is a lower calorie version. Loki has developed an aversion to the bottle which may have been caused by the initial few months at home, where we basically had to force feed him in order to make a minimal amount of calories. Right now he gags a lot when having the bottle or a pacifier. He attacks the breast or bottle when he is hungry but within a few minutes is either done, or starts a long struggle, fighting sleep and/or physical discomfort. The best way to get some food in is for me to lay down with him on the bed, be quiet and tickle him awake now and then. But the minutes are few!

The doctor will refer Loki to a GI specialist and hopefully soon we will have a series of test done to ensure his system is functioning properly. He will undergo a swallow study and an Upper Gastrointestinal Series. He will have to drink barium I assume, after which the liquid will be followed with x-rays and ultrasounds, to ensure his system works. In addition, because of his somewhat off hearing, he will also have a Brainstem Auditory Evoked Potential check. This means the pathway from the ear to the brain is examined.

It is becoming pretty challenging sometimes to be upbeat and patient with this eating situation. I feel incredibly sad seeing Loki struggle when he is hungry. I just want to feed him, and it is frustrating that such a basic and primal action just does not work. He loves the breast, there is milk, what is the deal? Well, the deal is obvious. He was tiny and not done baking in the oven when he came out. It just breaks my heart to not be able to help him be a happy eater and gain weight, just as most babies do without a problem.

Unfortunately not just happy eating healthy baby stories!

7 comments:

Inge van der Heijden said...

Hey Lijn,

Trouw lees ik elke dag het nieuws over jullie leventje en ik kan niet anders dan vol bewondering en respect zijn voor jullie moed, doorzettingsvermogen en positieve inzet. Hou vol meidje, jullie hebben al zo'n lange weg afgelegd en ik kan me zo goed voorstellen hoe je je bij tijd en wijle moet voelen. Ik denk aan de hele familie en wens jullie veel sterkte toe en vooral ook heel veel plezier maar dat straalt regelmatig van de berichten en beelden af. Loki is een scheetje, wat mij betreft de mooiste filmster van het jaar! Warme groet, Inge van der Heijden.

Unknown said...

Okay, I don't know if your insurance will cover her, but I just remembered that Brianna saw Patricia Tsai at UCSF. She was wonderful! I went to this appt with Angie when CPS was trying to get her to agree to treat the poor baby's reflux and get a g-tube not an NG tube...you probably remember. Anyway, she was very kind, and understanding--and she followed up with a CPS report about her concerns about Angie's care, too--went out of her way to do this after we talked behind the scenes. She is Assistant Clinical Professor in pediatric gastroenterology, and she specializes in pediatric gi and nutrition. Hope this is helpful.
Hang in there. I'm surpised the general doc hasn't recommended some short term Mylanta or something, just as a trial...it's very safe, and available over the counter. Just to see if it makes a difference.

Frits said...

Hi Grandson Loki Sky! What kind of encouragement is it you need to get you to start drinking/eating better? Wish I could give it to you. And so do many others. Meanwhile, all I can do is send postive energy and love to you, mom, dad and oma over there. Love, energy and good vibrations to you all. And I miss you sooooo much! Frits

Circe said...

Lieve Lijn, Jesse en Loki,
Sterkte met alle onderzoeken en voedingsvraagstukken. Licht en kracht gewenst. Liefs, Circe

Richard en Maaike said...

Hoi mom,
Wat een strijd kan het soms zijn, he? Ik hoop dat je snel een afspraak hebt en het duidelijk wordt of er inderdaad sprake is van een reflux, of wellicht een ander ongemak. Ik hoop dat je je geduld kan bewaren. Wees lief voor Loki, ook dat zorgt dat hij groeit!
Dikke knuffel, Maaike

Suzan said...

Lieve mom, dad en Loki,

Wat moeilijk zeg! Dat arme mannetje... En jij, mom, wat moet dat moeilijk zijn. Ik hoop dat er snel een oorzaak van wordt gevonden, waar makkelijk iets aan te doen is!

Heel heel heel veel goeds gewenst!

Liefs,
Suzan en Johan & Phileine

Anna said...

Our fav GI doc was Dr. Elizabeth Gleghorn at CHO. She's also listed as one of Bay Area's top GI doctors.

I just checked CHO's website and didn't recognized the other doctors. We saw one other (maybe she was a resident) and didn't like her. Dr. Gleghorn was the BEST because she looked at the patient and ignored the stupid growth chart. We were really not interested in the g-tube but that didn't mean that the GI nurse practioner and the resident didn't push it on us. Every conversation was "when can we schedule surgery?"

Dr. Gleghorn gives sound advice. She will work with you - not against you.

If Loki gets tuckered - maybe this is just a temporary thing? I know it's a DAILY issue...but perhaps there's a light at the end of the tunnel if you're dealing with stamina. He's so little with such rich medical history. No wonder he's still figuring things out.

I'm confident you guys will find your way. I think of you often. Hang tough!
Anna
aka - Summer's 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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