Today's quote

Strive to be as a little child who, while its mother holds its hand,
goes on fearlessly, and is not disturbed because it stumbles and trips
in its weakness. So long as God holds you up by the will and
determination to serve Him with which He inspires you, go on boldly and
do not be frightened at your little checks and falls, so long as you can
throw yourself into His arms in trusting love. Go there with an open,
joyful heart as often as possible; if not always joyful, at least go
with a brave and faithful heart.

Francis de Sales

Big Boy

Yay for our Big Boy! Last week they took out his ventilator and probably within a few days he'll get the nasal cannula off too. Last night his nurse helped Keith get him dressed in real clothes for the first time and he looks so cute and grown up! (He's gaining weight and is now 1 pound over his birthweight @ 4 lbs. 3 oz.!) He's been sucking on his (massive looking) pacifier like a champ.

Today his nurse Nicole mentioned that he was much fussier than usual and she thought he was getting really hungry. A couple days ago the surgeons had said that since he recently developed a hole/tunnel in his bowel (caused by the previous infection), they'd have to let that heal for 6 weeks before he could even start being fed. It was breaking my heart to think of my boy starving for another 6 weeks! (Not literally, since he's getting nutrition through IV's, but that doesn't give him the sensation of his tummy being full, so he always feels hungry.) Well, today we got the great news that the surgeons changed their minds and so today James got to start feedings with my milk!! He'll only be getting 0.5-1 mL per hour on a 24-hour drip through a tube in his nose down to his stomach (total amounts to about 1/2-3/4 of an ounce per day), but that's at least a start! If he tollerates that, they'll begin increasing the amount slowly over time. The big praise about being fed, aside from James' comfort, is that even this small amount of food going through his stomach and what's left of his small intestine will trigger the liver to start getting rid of all the excess bile it's been storing, which causes liver damage.

The docs said he could be in the NICU for another 3-4 months and when he does get to come home we'll need a lot of training on how to take care of the permanent IV's and feeding tubes he'll need throughout at least the first year of his life. Eventually he'll have another surgery to connect his small and large intestines back together, but not until his wounds have healed from the inside out, he's gained a lot more weight and hopefully his bowels have increased in length--probably at least 6 more months.

Hey, it's baby steps all the way and it'll be a very long road from here, but we are thrilled with all of his progress. :-)

Please continue to pray for:
1) the healing of his wounds
2) smooth and steady feeding process
3) decreasing levels of biliruben in his liver & that no permanent liver damage would occur
4) preservation of his large intestine for the future, since it isn't being used right now
5) complete and quick healing of the hole in his intestinal tract

New 'Do & Snuggling Too

We had two big outings today. First up was visiting the hospital and Grandma Frank's first time holding James! We just got permission from the nurses yesterday to let other people hold him, so all the grandparents are raring to go (Grandpa Frank will have to wait until they come out again at Christmas time).

James was weaned off his morphine drip today, so it was his first time without any pain medication and although he did cry once or twice, he's been recovering quickly and is pretty easy to soothe. They are lowering the flow on his nasal cannula and he might be able to come off of it within the week. Now that the huge ventilator tube is out of his mouth, he's learning how to suck and often sucks/chomps down on the tube in his mouth & he's also now learning how to use a pacifier. It's funny how all the normal newborn baby things seem like such an accomplishment to us now! :-)


Our second outing was a trip to Little Clippers for Maddie's new haircut. It's gotten long enough that she's started twirling it again and after 3 days in bed at the hospital last week, it was turning into a rat's nest. :-) Here's the before picture...

and here's the after...

Hooray for Sisters

(and brothers-in-law, too!)

Dana and Travis couldn't handle being half-way around the globe during all the surgery and funeral craziness of last week, so they decided to fly home at the last minute! Horray! It was so wonderful to see them and hang out, even if it was only for a few days. Every time they come home it just feels like things are complete.

On Saturday we just hung out at our house and watched football games and played with Maddie (who is back to her old self--except for bladder pain every time she urinates, poor girl!--and has TONS of energy). Maddie recently made up a new creative play area--she opened her own restaurant in our kitchen nook. Apparently it doesn't have a name yet, but she has decided that it was decorated by an interior designer named Rudy! (Yes, that was totally her doing and I have no idea where she got that from, but the name is perfect, don't you think?!) If you ever visit her restaurant, know that she does make meals to-order but there is no take-out...you have to come and sit down if you hope to get any food! Her menu specialties (all made out of mini tart tins and her plastic beads, of course) are banana cream pie, macaroni and cheese and minestrone soup. Delicious! :-)

"freeze dancing" with Nana (in between restaurant orders, of course)

Maddie and her favorite aunt! :-)


James has been doing amazingly well since his surgery on Friday and has been progressing even faster than his doctors anticipated (yay for answered prayers!) He was able to come off the ventilator on Sunday and now has just a small tube in his nostrils just in case he needs extra oxygen, but he's barely needed it and I'm guessing he'll be able to have that taken off too within a couple of days. Keith and I both got to hold him this weekend, which was such a joy!

First day off the ventilator!
(The tube in his mouth is to help empty his stomach, since his intestines aren't working yet. I'm sure he'd love for that to be out too, but that one he'll have to get used to for a good long time.)

Our Little Stinker kept pulling all his tubes, so they had to glove him up!
You keep that fighting spirit up, buddy! :-)

(you can also see the scar on his back from the PDA surgery, which so far hasn't seemed to bother him too much)

Surgery update

James had surgery today around 3pm for his PDA heart-lung valve and everything went really smoothly--praise the Lord for that! The surgery itself only took about an hour or less, so it was much less harrowing than last time. He has a fairly long scar now that runs from his side and along his shoulder blade, so the poor guy will have quite the road map of scars to show when he's older. He seemed pretty stable after surgery when we saw him and will be under sedation for up to the next 24 hours, so at least he'll have some time to rest comfortably. He still has his respirator tube in, but they may be able to wean him off of that and finally take it out in a couple days, which I know James will greatly appreciate! He's become much more alert this past week and is beginning to be aware of (and pull at!) all of his tubes and wires, which is a good sign...but annoying for him.

Thanks again for all your prayers and continued support of us during this long journey. Hopefully this will be the last traumatic event for awhile! :-)

A handsome head of hair

...and a super cute face to go with it! Here are some pictures of James from before his abdominal surgery and then some from today, when Keith got to hold him (for an hour!) for the first time since the surgery. He's such a sweet little boy.

Daddy and his boy :-)

For the past two days our nurses have commented about how he's much more awake and alert, sometimes staying wide-eyed and curious for up to 20 minutes at a time. Up until now, we've only got to peek at his eyes off and on for a few minutes at a time before he's asleep again. Our sweet nurse Nicole made us this precious sign last night and now it's hanging on my bedside table.


A condensed update is that James continues to heal and be stable, but since his PDA (heart-lung valve) remains open and it should be closed by this age and could pose a risk of damage to his lungs and stomach/intestines due to incorrect bloodflow, the surgeons have chosen to schedule his surgery to close this valve on Friday afternoon. We'd been hoping to avoid this week altogether (Maddie will be in the hospital until Thursday or Friday & my grandma just died and her funeral will be on Thursday morning), but no such luck. Please continue to hold us in your prayers, as the phrase "when it rains it pours" has certainly become reality in the last week! I swear, the hospital staff must be beginning to think that we have a serious case of bad luck going on! If one more bad thing happens, I might just have to curl up under a rock somewhere and hibernate for the winter.

"The big building with toys..."

...is a fabulous place here in Portland, otherwise known as OMSI (Oregon Museum of Science and Industry)...but to Maddie it's just known as "the big building with toys". And when you get right down to it, that's just what it is! In the days prior to our lives being filled with surgeries at different hospitals on both children, Grandma Frank and I made a point to have a "special date" with Maddie and forget our troubles at least for an afternoon. :-)

We'd never taken Maddie to OMSI before. She's been to the zoo and the Children's Museum multiple times, but for some reason I always thought of OMSI as a "big kids" place...until I read about their Science Playground area for 2-6 year olds. Now in Maddie's eyes this place even trumps the zoo, if you can believe that! Here are some pics from our afternoon playing together...

This suction tube ball shoot was Maddie's favorite thing & she thought it was hilarious that the balls went flinging out of the top as she scampered all over to catch them!

Maddie loves toy kitchens and stores and food, so she was in heaven!

Getting cozy with Grandma Frank. Keith's mom Darlene (who lives in Ohio) has been staying with us for the past month and has been an absolute Godsend during these crazy times! We couldn't have managed without her! :-)