talked with the dr....

Talked with the Dr. this afternoon, and he is very happy. He seemed surprised that she had eaten that much yesterday. He told me that he was very proud of me. He said we can just continue to feed her and as long as we are making sure she has enough calories, he is not as concerned that the calories are from formula. I also asked if it was ok if I breastfed, occasionally, as long as I knew that she had already had enough calories, and he said that was perfectly fine. That made me feel a lot better since Lily has a cold today, and has been dying to nurse, and I felt so horrible not letting her. I am feeling 100% better right now. I can handle counting calories for her. We will check in probably Monday and then the next thing will be to check her weight (maybe Wednesday?) to see if there has been any change. Thank you all for checking in on us, and keeping us in your thoughts and prayers. Here's some cute pictures because there has been WAY too much of me talking, and not enough pictures.

Zane and his planet heroes rocketship. Thanks Grandma and Grandpa!

Lily trying to pull herself up to see the rainforest mobile closer...she LOVES it.

another wrinkle...

As if the stress of all of this wasn't enough...Lily now has a cold. She slept yucky last night and does not want to drink today because she is stuffed up I assume. She has ate her oatmeal today with extra formula , so its really thin she could drink it, but she would rather have it by spoon. Time consuming, but calorie loaded. I will post when I hear from the Dr.

Ugh.

this afternoon...

Still not liking the formula, although we seem to have found the bottle she prefers the best. She sort of sucked on this one brand of formula, without making a face afterwards, and even went back for it, but we think she was full so she didn't want to eat more. We are going to try this same combination later tonight.

She had more oatmeal with formula (no fruit) which is a step up for her. She normally will only take cereal with fruit, so that's good. She seems to have no problem sucking on a bottle for juice either. We have two more formulas to try, and then I really think we may move to adding strawberry quik to it. That's probably soooo not ok, but something has to work.

Totals for today: she has had about 12.5 oz. of formula, only drank 5 of those oz. But, with her food she is up to 643 calories. That is not far off from the 750 they want, and she has one more meal. I think we will definitely make the 750, but not sure if the Dr. will be happy with the formula amount.

so far...

We have been successful at getting her to drink out of the bottle, only juice though. She still refuses the formula. After eating this morning, she took a whopper 2 hour nap which was really nice. She has since eaten some dry cereal, 3 oz of juice with water, 1.5 oz. of formula, a jar of baby food (w/chicken in it), and a piece of bread. So far, so good. She's over half way to the amount of calories he wants her to get per day ... it's just not in formula, so not sure how the Dr. will feel about it. I'm going to go out and get some different kinds of formula this afternoon. Something has got to work. It's stressful when we are working against a deadline.



Love you all, thank you for your prayers.

this morning...

I know that you will probably all be sick of this (I am!). But I thought I would continuously post today on our progress.

John tried the bottle with no luck this morning. I tried bottle and cup no luck. I gave her cereal made with formula and a little applesauce which she ate up. Then I fed her about an oz. of formula mixed with juice from a spoon, and then she drank about 2 oz. without juice from the bottle like a cup without the top on it. All of that totaled 245 calories! The Dr. had said he wanted her to have about 750 calories per day from formula.

John is taking the day off to help. She is definitely happy. It's looking up. More later!

more on lily...

Ok, here's the full story... I'm a little less emotional right now (just a little), so I think I can handle it.

The Dr. was really baffled when we went in. She didn't gain anything over the week, I think she was exactly the same. He just sat there thinking for a long time (waiting for his "little Dr. voice" he said, haha). He then told us, he wanted her to eat table food, what we eat ground up, as much as she wants. At least 3 times a day, and not to worry about breastfeeding, just let her do it when she wants. And he wanted to do the sweat chloride test for Cystic Fibrosis. Then he said we would check in a week and see what's going on. He said we would probably need to meet with one of the other Dr's at that point that is a specialist in gastroenterology. He decided that he would just go talk to him first, to see if there was any tests or anything he wanted to get a head start on.

When he came back, he said the other Dr. thinks that her labs were off due to slight dehydration, and that it is probably a caloric issue. Since I breastfeed, there is not anyway of measuring how much she is eating, without causing me a lot of stress (not that this isn't stressful anyways) and stress=not good for breastfeeding. So, I have to feed her formula, and a lot of it - 36 oz./day, in addition to whatever table food she will eat. He said that we had the two days to do the bottle, and the only reason he is letting us take the two days is because he knows that we are good parents, and she seems ok (happy, etc.). If she looked bad, he would have made her go straight into the hospital for a tube. Also, he would prefer if he could keep her out of there because of all the RSV sickie kids in there right now - we don't want her to catch that!

They are going to do the Cystic Fibrosis test still, but want to wait until she is fully hydrated so the results don't get thrown off. So, they haven't ruled any other problems out, but need to find out for sure if it's not just a result of caloric intake.

Clarification of the tests they have already done: most likely no leukemia type cancers, most likely no celiac disease (which I didn't think they had done), they didn't get enough to do a test for inflammation.

We have bought every type of bottle/nipple/sippy cup/and formula out there. So far this morning, Dad has tried - no luck. I am going to go give it a try now. Thank you for all your prayers.

Lily...

So, short story right now, I will post more later...
She has 2 days to take a bottle...if not, she has to go to the hospital and get a tube in her nose. The Dr. at this point just wants to monitor how much she is eating, so I need to give her 36 oz. of formula per day, plus all the solid food she will eat (at least 3 times a day). We are supposed to call in a couple days, and let him know how it's going. We are also supposed to do a sweat chloride test next week for Cystic Fibrosis. Please pray and pray and pray that she will take a bottle (we have had NO luck on bottles up to this point).

mmmm dinner club...

I just got my first recipe for a dinner club that John's cousin is starting. Someone is in charge for the week of sending a recipe to everyone, and then everyone tries it, tweaks it, and comments on it. My mouth is watering already Kami! Can't wait to try it, and I have some ideas for tweaking it already, I will let you know how it goes, and maybe I will post them here after trying them (if I have your permission Kami?).

enough already...

Ok, as if 4 posts in one day aren't enough already, I just wanted to post to say that I finished a massive book last night. "The Pillars of the Earth" is almost 1000 pages. Yay me! It was good, but in case any of you are interested in committing yourself to reading it... there are some nasty treacherous yucky graphic scenes, so that is my disclaimer. They really need to have some sort of "rating" system for books I think.

did you know...

melamine plates that fall on the bottom heating element of the dishwasher, and then start to burn, smell like really foul fish. lovely.

swimsuits and the saggy baggy elephant...

This is sort of 3 posts in one, being that they are really not related.

#1: I told Zane I was going to go outside this afternoon to check on the sprinklers. I needed to check that they are all working, since it's getting to that time to start running them. He said, "Ok, I want to come too!" Next thing I know, he is outside with nothing but his swimsuit on! It was around 64 degrees today, so I decided, if he wants to run through the sprinklers, so be it. I didn't realize it would lead to, "Can I do the slip and slide, or swim?" HA, no, it's flippin' WINTER. He wore his swimsuit all day, yes he did. (and yes, I did just type flippin').

#2: We are embarking on an adventure in babysitting. I am going to be watching a 3 year old girl four hours a day starting tomorrow. I think it will be good for Zane to have a playmate, let's hope they get along well! Do you think her mom would approve of sprinkler running in 60 degree weather? Probably not. Let's not tell ok?

#3: Does anyone remember the story "The Saggy Baggy Elephant"? It was a little golden book about a little elephant with saggy baggy wrinkly skin, who gets teased by the other animals. Yes, my poor Lily is the saggy baggy elephant. Don't know if she has gained anything this week, but it's not for lack of trying. She's been eating great, as always. Guess we will find out something on Wednesday....I promise to update as soon as I can. I don't know if anyone else can tell from this picture, I just know I can since I'm her mom, and I knew what she looked like before. She still has chubby legs, those haven't sagged. But, look at her sad saggy armpit and old lady arms! Thanks for all your prayers for my saggy baggy baby!

nada...

Yesterday was a hard day. I keep telling myself not to freak out until I know for sure if there is something to freak out about. It's been challenging to make sure she eats as much as they want her to. She loves to eat solids, so that is not a problem, but it's a careful balance to make sure she isn't too full on them so that she will still nurse every 2 1/2-3 hours. I figure if she wakes up at night at all I will nurse her too (I hope I'm not setting myself up for no more sleeping through the night!). She is happy and content and full of squinchy eyed smiles that always make me feel better.

My mom has been in town this week, so we have been shopping a bunch, which has helped take my mind off it a little. And of course a little Lemon Cream Cake goes a long way. Her appointment is Wednesday morning, so we won't know anything new until then. Thank you so much for keeping us in your prayers!

the most important meal of the day...

I left my son to make his own breakfast this morning, and this is what he chose to make.




It is a triple decker peanut butter and honey sandwich with the pb/honey blobbed in the middle and not spread out. Yum!

lily update...

The dr. called back with some lab results. Nothing is too serious at this point. Her white blood cell count is low - called neutropenia, and she has a low ph meaning she is slightly acidotic. Her urine was fine, and there weren't leukemia cells. They didn't get enough blood to do the celiac disease test. They are going to hold off until our appointment next week to see if her weight has improved and then go from there. They may also repeat the CBC at that time to see if the white blood cells/ph is the same. So, still not definitive answers. She is happy and eating well, so keep us in your prayers.

our lily...

A few people in the past few weeks have told us that she looks "skinnier" and in the past couple of weeks I have really started to notice it. Her skin around her belly and arms that used to be quite chubby, looks wrinkly...like if you were to lose a lot of weight fast...your skin would kind of hang off? So we took her in today. She last went to the dr. in Dec. for her 6 month appt, and her 9 month appt was scheduled for next week, but I just didn't think I could wait. Apparently Lily now weighs 16 pounds 7 oz. At 6 months, she weighed over 18 lbs, and at her 4 month she weighed 17 pounds. She weighs less than she did at 4 months old. She also has not grown at all (in fact she shrunk? we couldn't figure that out either). Not good.

The Dr. has ordered a bunch of blood tests for some really scary things that I won't mention (because I'm freaked out enough - I don't need to freak anyone else out), but in the meantime is just having me nurse more often. We take her back next week to have her weight checked again, and we will hopefully find out this week some of the results on the tests. Please pray for her (and us!) that all will be well.

new design...

How do you like it?

happy valentine's day...

Happy Love Day!

We had a fun day of valentine making, preschool for Zane, lunch date with mom/dad and Lily, pizza for dinner (yay no dinner making for mom, thanks dad!), and a movie date for mom/dad. Hope you all were able to celebrate with your loved ones too!

ok for real...

This really just happened. John and I are up late watching some TV. Simpsons is on, and it breaks in with "This is a test of the Emergency Alert System...BEEP BEEP BEEP". Ok, so it runs through the whole announcement thing, followed by some beeps. Then when it should be done, we start hearing this. I'm not kidding. Someone hijacked the EAS. It went on for a good 2 minutes before it returned to programming.

when your kids go to bed...

We went in to Zane's room last night to make sure he was tucked in after he was asleep...and this is what we found. Haha!
I think Lily has lost weight, and/or grown taller. She seems much skinnier lately, and less of a chubby baby. She is not really more active, in that she has no interest in crawling or being mobile much at all. She is quite content to sit on my lap all day if I let her. It's a cute pic of her. Nothing to report about it, just a way cute picture.

the king and the cheese...

It is the letter K this week in preschool. They made kites on Tuesday and yesterday they talked about kings and then made crowns. (well decorated the Burger King ones). Now Zane insists that crown starts with the letter K. No point in arguing there. He is quite the reader already, I can't believe it. Now if only we can get him to understand that when you write you go left to right in a straight line... not put the letters of the word anywhere on the page. It's just his creative side coming out I think. Lily does the funniest thing that I have not been able to catch on camera. Sometimes when you smile at her, she will smile back but squinch her eyes up too. It looks like she is giving you this big cheesy smile. But, a lot of times, she just squinches her eyes, and doesn't really smile with her mouth. It is ADORABLE. This picture is the closest I have gotten to catching the squinchy eyes. Super cute cheeser!

my memories of president hinckley...

I was just thinking today about my memories of seeing President Hinckley in person, and I have 3 distinct ones that came to mind. First was when I was able to go to the Conference Center dedication General Conference session. In spite of growing up in Salt Lake City, I had never attended conference in person. And this time, I actually lived in Texas, but had come back to be able to go. (It is much easier to get tickets when you live in another state by the way, but I think I got these tickets from my Dad who was in the Mormon Tabernacle Choir). I remember sitting there during the prayer and how my spirit literally wept. Everyone also spotaneously stood and sang after Pres. Hinckley's prayer, and then slowly every apostle and authority on the stand stood on their feet. It was so neat.

The second time I remember seeing him was right before we moved from Texas, and he came for the dedication of the Lubbock, TX temple. We were outside for the cornerstone ceremony (John was singing in the cornerstone choir) and it was so neat to see him come out with his wife. They were so cute together. He made jokes, and even called my niece and nephew out of the audience to put mortar on the stone. When he left after the dedication, we were outside the temple and everyone broke into "We Thank Thee O God For A Prophet" as he got into his car, with his signature cane wave.

The last time I saw him in person was at John's graduation from BYU Law School. He had a granddaughter in John's class. We were all sitting there in the audience, and all of a sudden the prophet walked in and sat on the stand. It was so unexpected. Very cool.

I'm sure there were other times, but those are the ones that stand out to me. He was such a happy man, and we will miss him. Here is a picture from John's graduation (sorry it's not very good - the lighting wasn't very good and I was behind a pillar!).

a weepy day...

This might make you tear up a little. But maybe it was just me, I had one of those days.
the bridge