Rollin' down the river

Okay so it should really be called, "Rollin' AND the river".

We're still having a great time here at Will's Nana and Pop's place. Nana has been having a lot of fun playtime teaching Will some new "tricks"....like yesterday when he decided to roll over from his back to his tummy! He's been going tummy to back for a long time now...but this was his first time to go the other way all by himself! Now there's no stopping the boy. I'm sure he'll be crawling before we know it.

Last night we went for a walk in Caldwell Park then stopped at a long bench to enjoy the beautiful breeze off the Sacramento River. It was better than A.C. and a wonderful change from the heat waves we've had here....speaking of heat, I had a funny thing happen to me today! Suzanne and I were out shopping around, and she ran in to purchase a few groceries while I stayed in the car with my sleeping son. I decided I'd make the most of my time waiting, so I pulled my nursing cover over my head, and started to grab the pump, when I heard a fist banging on my window! It was this rather burly woman and her daughter, so I cautiously opened my window to see what they needed and she yelled at me "you're too close! I can't even open my door!". I didn't understand what she was talking about, then she pointed to her old beaten down truck parked beside us. She said "I can't even open my door! You're too close!" so I just apologized and told her I didn't do the parking :) She said "Well are they going to be quick? It's HOT OUT HERE! We can't wait forever, can't you move it?!" I was a little flustered, espeically being all "undone" to pump, and shoeless and such...so I locked the doors (just in case she had someone waiting to jump me under the car, lol) and I climbed up into the front seat and moved the car. She signed "thank you" about 5 times before driving off. My mom in law said I won brownie points for taking the yelling for her, but that lady was CRAZY!

Tomorrow we drive about 3 hours South and then into the mountains to visit Great Grandma and Grandpa "E". That should be a fun time for them to get to meet the little man for the first time. We'll be with them for a few days and I'm sure they can't wait.

This is from last week but I had to share-It's a shot of our little man with his Aunt Mary. He was all dressed up for his cousin Lucie's baby shower! I'm sure he can't wait to meet her just like the rest of us! The other day he was asleep on Auntie Lin's big baby bump, and Lucie kicked him (in utero)! I told him "get used to it son, I'm sure there's more where that came from!" Lol, girls always rule the roost.

I'll post more when Will does something else new :)

Leaving on a jet plane...

So Will had his 1st official plane ride yesterday!

He did GREAT! I was so glad he didn't seem to be bothered at all by the altitude. I gave him a little Tylenol so maybe that helped. After sleeping for the first hour or so, he woke to nurse, played a little bit, then slept for a few more hours...the only time we heard a peep from him was when he pooped :) and then he yelled for a few minutes AFTER we landed. Other than that, it was a breeze! He talked a lot and wooed all the ladies especially. Pretty much everyone around us knew we were going to see "Nana and Pops" by the time we de-planed.

Once we had a quick bite to eat, we headed straight over to let the Great Grandparents (the B's) meet the little man...and they were IN LOVE. He was all goo goo eyed at them, and seemed at home with the new family. We also managed to get a 4 generation picture of Great Gpa B, Pops (Billy's dad), Billy and Will. I can't wait to see that one!

You can only imagine how excited Billy's parents are to have us here! It's been about 3 months since Will's Nana held him, so she pretty much gets dibs anytime she wants. He's been very happy to see her, and flashes many smiles and coo's at both of them. They had the house SET UP for us and it was WONDERFUL! They invested in a lot of
baby gear for all the future grandchildren to enjoy too...so our room has a crib, changing table, diaper genie and bouncer. Suzanne also picked up a stroller, baby bath sling, hooded towels and washcloths. She kept the Jungle theme for the bedding and Will seems to be sleeping very comfortably :) She also made a new blanket for him to play on when we visit..it's real cute and soft.

Uncle Todd met Will for the first time. It's so cool he gets to spend time with his new nephew. I think he surprised us the most, because when Will cries, he seems in no hurry to hand him off to anyone else..he is quite determined to quiet him on his own and really seems to have the touch when it comes to putting the little guy to sleep.

We get to be here for the next 15 days....so I'm sure I'll have plenty of good stories to tell. It's STINKIN' HOT so we haven't left the house much yet....we shall see if that changes depending on the weather. I think we set records yesterday at 116!

More later. Gotta' wake my son up to eat. He thinks we're still on Central time :)

Brinner

Some of our favorite breakfasts take place at dinnertime....and tonight was no exception :) We had blueberry waffles, scrambled eggs w/parsley and bacon.

I thought I'd share my homemade syrup recipe. It's so quick to make and really makes the meal seem that much better.

Easy Syrup
1/2 cup each of brown sugar, sugar and water
1 Tbl butter
1/4 tsp flavoring (vanilla, maple, cinnamon, etc)

Boil first 4 ingredients 5 minutes.
take off the heat and add flavoring of choice.
serve warm :)

serves 4

This little piggy

keeps eating and eating and eating all the way home!

We had our 4 month shots and weight check on Wednesday, and the little man gained 9 ounces this past week! He's 10 lbs 14 ounces and 23" long!


I FINALLY put the last of his newborn onesies in the "outgrown drawer" when I attempted to put one on him yesterday. He's officially a size 3-6 month boy :)

Look at those cheeks!

I'll add more later, just thought I'd give an update on the good news!

Exceeding our expectations

Since the meds are making Will hungrier than ever, we were thrilled at his checkup Wednesday when he weighed 10 lbs 5 oz.! (He went into the hospital at 9 lbs 8 oz.)

He's averaging a gain of about 1 ounce per day as opposed to his usual 1/2 ounce. He's still eating like crazy, and he's been ending most nights now with a 6 ounce bottle. I've rented a hospital grade pump for the time being to really keep my supply going (since he's not good at demanding what he really wants) and I'm seriously having to keep up with him! I want to store some away for our upcoming trip to Cali (to visit Nana and Pops) but he keeps eating everything I pump! Ya'll pray for me! LOL! I've been nursing him during the morning and night, and the daytime is usually bottled breastmilk w/or w/out the rice starch supplement.

It seems like the reflux and arching are improving more and more...we just gotta work on the tummy aches and cramps that the new meds cause. He seems to deal with them pretty well, but he has a few more fussy times than before. I guess that comes with the territory. Overall I think he's feeling better. We noticed the other day he was so peaceful after he ate. I love it!

I caught this cute moment he was having with Grandma May and her "boo" game. He didn't know whether to laugh or cry...it was too funny.

Jesus in his heart

I've had a started draft of this post for several days but I had to go back for more edits today because the leading line was "we're finally home after an 8 night stay in the hospital." This was actually 6 days ago, and my apologies for not updating you all sooner :)

We were discharged with paperwork that read "Reason for admission: Failure to Thrive. Current Diagnosis: Failure to Thrive, Reflux."

First of all, we Praise our God for giving Will a good heart! His echo showed the murmer was minor and warranted no repair. We were able to watch the entire thing. Will was sedated (poor boy ended up sleeping the rest of the day), and it was just a very long and complete ultrasound. At one point, I looked up the screen and I saw JESUS! It was his face, his hair and his robe....he was looking over at Will, and He was in his heart! I'm serious, I had a peace after I saw Him, and knew that He was watching over our son. How cool is that?! Will had Jesus in his heart!

It took the last day of testing to prove what we were suspicious of the entire visit. Reflux. The doctors were very thorough, as I posted earlier, but they couldn't possibly believe that a baby could actually be deemed "failure to thrive" because of something as simple as reflux. Every baby has a slight case of reflux, with their immature inner workings...but others, however are very simply put "sick" with reflux. One doctor in particular, whom we have a scheduled appointment with in September states in his book, Colic Solved the sad truth that babies, especially the ones who don't spit up, are constantly overlooked when they are in fact, very sick. So sick to the point that they don't want to eat (because it hurts), they don't want to sleep (or they wake themselves up frequently), and the don't grow very well (because they don't want to eat). Sounds familiar to me.

I'm glad we got to the bottom of Will's issues. Besides the reflux we suspected all along, the Upper G.I. showed he has delayed gastric emptying....in other words, he stays fuller longer because his tummy doesn't do it's job in pushing the food out as well as it should.

I know some may have criticized me in the past saying that I should have been feeding him more all along, or possibly even changing his main food supply to formula rather than breastmilk. The fact is I DO feed him as much as he will eat. I wake the boy up to eat, even when he shows no hunger signs. At the end of our nursing periods, I attempt to give him milk I've pumped off. But until now, he showed no interest in eating more. He was full. NO WONDER! And as far as formula vs. breastmilk, breastmilk is the best food for Will and his reflux. It is easily and quickly digested. This means less acid to come back up all day long. It also contains a natural antacid that helps his cause. We are, however adding those 2 formula-infused breastmilk bottles that contain a rice starch thickener to help with the reflux, and add a little more calories (and a red rash he doesn't usually wear on his hind-parts).

The doctors added a third medication to Will's daily doses, in order to improve his motility. I have to say I now have a PIGGY for a son! I have NEVER seen him eat so much in a day, I think he's gained 2 pounds since we've been home! LOL! It really seems to have improved his hunger, but I'll have to give it a few more days to take shape before I really say whether I like how upset his tummy seems to be from it. I will be so glad when he doesn't have to be medicated every day! But for now, we have a better handle on his reflux and motility, and his arching has improved dramatically! We are praying he grows out of the reflux and d.g.e.

As far as our hospital stay....
It's funny how we'll miss those wonderful nurses who interrupted us every 4 hours to take vitals :) They were so helpful and encouraging during our stay. It almost seems like they weren't just doing a job, but also showing us love.

One evening I was crying in the waiting area of our floor, because they had poked Will 4 different times looking for a good vein to insert the I.V. He was SCREAMING and there was absolutely nothing I could do about it. I asked Billy to take over at the foot of Will's bed, and I quietly left the room...and took a walk. A nurse I hadn't met stopped to console me, and offered encouragement for my weary heart. She periodically checked on Will thereafter.

One afternoon they were drawing blood and our sweet nurse thought it would be better to remove him from his "fun room" and do the mean things somewhere else. While I stood by Will's side, kissing his little face, I saw that she had made a good poke on the first try! I said "Oh wow, thank you so much for getting it the first time!" she said "don't thank me, I was talking to the man upstairs". Billy told me later that when she came in to get him for the draw, he had the praise baby dvd running, and she curiously was asking about it. I think she felt comfortable later, letting us know she too was a believer.

Another day, while visiting the milk bank, I overheard one of the lactation consultants introducing her coworker to an emotional mom. She said "this is my good Christian sister and anytime you need her to pray with you about your son, she's here too". So on one of my weary moments, guess what I did? I asked her to pray with me! She held my hands firmly and we prayed in the spirit together! Then she sent me on my way with prayer cards to claim for our son, and a whole packet of healing scriptures.

We praise God for the knowledge we now have concerning our son and his health. He has a good brain, heart, thyroid, pancreas, liver, kidneys, bladder and gallbladder! He doesn't have cistic fibrosis and the issues he has faced up to now will be gone and outgrown in no time! It's not too often you find out so many things about your kids health this early, but we're thankful we did.

He is STRONG and the boy is getting FAT I tell ya'!

A little updating

So the doc came in yesterday and informed us that Will is having 3 major tests tomorrow. The first will be a heart Echo and he will be mildly sedated. He won't be able to eat 8 hours prior, so they are putting him on I.V. fluids again tonight to keep him hydrated. I'm sure he hasn't missed that big taped up mess that keeps him from sucking his fingers :) At least he's had a few days to be without it.
They will also be doing the swallow study that we've been pushing for. He'll drink the barium and we'll be able to tell how everything moves inside.
The final test tomorrow (from what we know at least) is a sweat study to check for cistic fibrosis. I guess it can cause growth restriction so they're just covering all their bases.
We're still waiting to hear the results of the organic stool test (it looks for any chemicals from his gut that are signs of gene mutations) since I have the MTHFR.
Everything else has come back NORMAL. Oh, and the last post I said they added Maalox to his regime...my bad, it was Zantac, and it's making a difference! He wanted to eat like a little piggy yesterday!

We had a pretty lazy 4th of July....just played the Wii and mom relieved us for an hour or so and we ran out to get food "off campus". That was nice :) I wanted a Coke Icee from Burger King, and that is precisely what I got :) Billy opted for Pizza Hut pizza and he was satisfied :)
Will wore an adorable festive outfit from Nana and the nurses couldn't help but pat his little booty when they would come to see him. We could kinda see the fireworks, but it's not quite the same when you can't hear them or the background music :( Oh well, maybe next year.

Still waiting...

You've been in a hospital too long when...

*The prepackaged muffins in the hospitality basket are like gold
*You greet the doctors in a towel-head
*Half a building's been built next door in the time you've been there
*Your idea of "getting out" is walking across the street
*You've learned the names of each ultrasound technician
*You go down to the milk bank and pump in your p.j.'s
*You hear monitors beeping even though it's really silent
*Hospital food doesn't taste "that bad" anymore
*You start making up nicknames for the doctors
*You associate the interns with characters off scrubs or greys anatomy
*Your back hurts from playing the WII
*You know more doctors than the nurses do
*You are thrilled about renting a VHS version of Liar, Liar
*You start using words like "stat"
*Your entertainment for the night is getting stuck in an elevator
*You consider 4 hours without interruptions a "good night's sleep"
*The most exciting part of your 4th of July is the view of the downtown fireworks
*You think you can diagnose your son better than anyone else can...

Pray we're right. Pray it's just reflux that doesn't require anything invasive (like surgery).
So far since my last update they've done an abdomen ultrasound including the kidneys, liver, pancreas, galbladder and bladder. All were normal.

They ran an organic culture on his stool to check for any milk allergies. We've yet to hear those results.

The EKG on his heart was normal. They did, however feel it is necessary for an echo cardiogram since his little murmur still peeps it's head up when they give a listen.

They are infusing my pumped milk with a high cal, preemie soy-based formula, and I'm cutting all dairy from my diet until we hear if he's allergic to milk or not. We give him the fortified bottles twice a day, as an added supplement to the nursing. Especially since we think he's not eating as much as he wants to because of how he feels.

Today they are talking about a possible swallow study. This is THE REASON we came here. We feel this is Will's biggest obstacle to overcome....swallowing properly without any reflux involved. It affects his eating and sleeping, and the boy's gotta grow! Pray for favor that they are able to perform this test sooner than later. The weekends usually mean wasted time getting nothing done (especially on a holiday weekend), and we would love for Will to feel better soon!

The occupational therapist has been coming by daily to work with Will on his suck, and on his arching. She placed an "X" of kinese tape over his tummy to encourage him to use his stomach muscles more and tuck his chin and arms when he lifts up, or when trying to raise his head from a lying position. IMMEDIATELY we saw a change in him! Although he still tries to arch after he eats (because he is still refluxing), he is no longer doing it continuously. I wanted to cry! They've added Maalox to his reflux regime and are using a liquid compound of his Prevacid that really seems to make a difference in him. This morning he just played and played on his back, talking to his toys and acting like he already feels better.

Thank you for your support and love. We have a direct phone line and private room if you want to see the little man. There are no certain visiting hours either. Pray for wisdom for the doctors, and sanity for us :) We're tired, but willing to stick this out until we resolve the underlying issues of Will's weight gain, comfort and health. He hasn't been able to gain much weight here in the hospital, since a lot of these tests require an empty stomach, and then with emergency's that come up in the ER we get pushed back sometimes a few hours longer....so pray for him to GROW GROW GROW! Even though our schedule is crazy here, we're believing we will have answers soon.

My milk's gonna' be better

...those were the first words I uttered to my mom this morning when I informed her that our son's brain ultrasound came back normal. Looks like we might just have a genius on our hands :)

Yep, you heard me right. We're at Texas Children's (been here since Monday) to figure out just why Will isn't gaining enough weight. If you couldn't tell from my opening line, they are being very thorough in their search. We'd like to attribute it to his silent reflux, and it looks like the more tests they rule out, the more they kind of agree with us on the culprit.

Considering the high stress involved in this visit, and the fact that we actually cancelled a much anticipated trip to Cali to be here, my milk supply was almost NOTHING yesterday. It was the saddest thing ever, and I didn't have any of my stockpile with me. So we went ahead and gave Will 1 small amount of formula while I pumped and tried to rebuild what was "broken" at the moment...and he threw it up...TWICE! He's NEVER puked before, and it was very scary to watch. Several nurses rushed in to check his vitals and see if he was breathing okay, and I was overwhelmed with emotions. They ended up putting him on fluids since he seemed slightly dehydrated. I was shocked when the doctor came to check Will after he threw up. She looked over at me and asked " How does he look to you right now? Out of all the people in this room right now, I trust to you the most". Little boy's got an I.V. and he's been quite the trooper, that boy :) He's already won all the hearts of the nurses and doctors over, and they've been for the most part very informative and great listeners!

They've done alot of blood work, and some tests so far....His chest xrays are normal all except that his stomach was extremely dialated in them. It could be due to the voracious yelling he did during the tests, but it could also be something else. His thyroid tests were good, and his vitals are all good. However, two doctors agree they hear a slight murmer in his heart. Today he will undergo an EKG and we'll go from there. They will also do a ultrasound on his abdomen. I believe we are meeting with a gastroenterologist this afternoon to find out what tests they will perfom on his esophogus and possibly pharynx and vocal chords...I personally believe his silent reflux is burning him all the way up to his eyes (if you see my boy on his back, or try to hold him "like a baby" you'd know what I mean) and if we can get that under control then HALELUJAH! Billy has a pyloric sphincter that doesn't always function properly. It gave him a lot of grief growing up, and it could also have been inherited. It attributes to the emptying of the stomach, and it could explain why Will doesn't gain as much weight as he should...

We are just shouting praises to God that it seems like they are narrowing the issues of weight gain down to a few minor fixable (wouldn't it be amazing if God did a miracle and they didn't even have to fix anything!) things.

Like a very thoughtful voicemail I recieved yesterday said "Will's rescuer is coming to his rescue, and his name is JESUS".