Monday, April 27, 2009

13 Months Old

Guess what! I actually have a list of foods Caleb likes to eat to put in his update! Isn't that exciting? Of course it is! But before I get to that, I'll tell you that he weighed 17 pounds 9 ounces at his follow-up appointment with the pediatrician last Tuesday. Not great, but he's not losing either, so I won't complain.
In general, Caleb has been a happier baby since coming home from the hospital. It's amazing what the proper nutrition can do for you, right?? He seems to have more energy and has gotten up on all fours several times. He rolls all over the floor and plays with his toys quite often.

So, what foods does he like? Is that what I hear you asking? Well, let me just tell you. Among his favorites are peas, bananas and sweet potatoes. But he also eats apples with prunes, squash, bananas with mixed berries, corn, and sweet potatoes with turkey. That about covers the baby food. But he's also interested in some table food too. He likes rice cakes a lot, potato chips, french fries, and sometimes he'll eat chicken. As for drinking, he hasn't touched a bottle since we were at the hospital which is fantastic! The recommended amount of his soy drink is 24 ounces a day, but he would drink more if we let him. It's just too expensive so we're limiting the soy drink to 24 ounces, and we've started introducing diluted apple juice if he seems thirsty in between. He's doing okay with the juice, but for the most part he doesn't really want it.

Caleb loves to play with his big sis. She's so entertaining! He's also making more and more sounds. That's good news, too because he went for a long time without making a lot of sounds. It seems now that he's trying to imitate what we're saying. He's started squealing too. It's so cute!

He and Laura Anne love to blow raspberries. It's especially fun in the car. He gets a kick out of it! Oh yeah, and he's trying to convince me that he only needs one nap during the day. I'm not convinced yet, but so far, he's winning. And actually, last night he fell asleep shortly after 7 and slept pretty good until a little after 6:30am!
I think that the older Caleb gets, the more he looks like Laura Anne. What do you think?

Wednesday, April 22, 2009

(Not Quite) Wordless Wednesday

This is a neighbor's cat that comes over to hang out with us often. We call him Wubbzy.

Monday, April 20, 2009

Malnutrition And Smarties

Alright, so I think it would be easiest if I give a brief run-down of each day of our visit to Wolfson Children's Hospital. A lot happened while we were there and I'm trying to spare you a really long story. So here we go.
Monday, April 6th
  • Checked into the hospital around 2:30pm
  • Caleb weighed 17 pounds 3 ounces
  • Stopped giving Caleb rice milk immediately because the doctor said it has been doing Caleb more harm than good.
  • X-ray of his hips just to make sure there was nothing wrong in there (there wasn't).
  • Caleb got stuck several times so the nurses could get blood samples.

Tuesday, April 7th

  • Caleb weighed 17 pounds 1 ounce
  • Caleb got an IV put in so he could get albumin (protein). They also put in the NG tube for feeding purposes.
  • The doctor thought Caleb might have a disease called Westcott-Aldridge. Three symptoms were matching up perfectly. But as it turns out, one of the blood tests was inaccurate, so that disease was crossed off the list. Good thing too. If he had it, he would have needed a bone marrow transplant! Yikes!

Wednesday, April 8th

  • Caleb weighed 17 pounds 3 ounces.
  • He was not eating or drinking anything on his own, so his health depended on that NG tube.
  • Allergist came to see us and wants to do a skin test on Caleb after he gets out of the hospital.
  • Doctors decided to put the PICC line in Caleb's arm. It made our lives much easier.
  • Doctors were disagreeing a little bit as to how much formula Caleb should be fed through the tube. If he gets too much, his body may not handle it well because he's been eating so little up to this point. Eventually they figured it out.

Thursday, April 9th

  • Caleb weighed 17 pounds 9 ounces
  • Mom came up to spend the day with us.
  • Chris and I were both sick with sinus congestion and coughing.

Friday, April 10th

  • Caleb weighed 17 pounds 10 ounces
  • We got a visit from the speech therapist who helped teach us tricks to try to get Caleb to eat on his own again.

Saturday, April 11th

  • Caleb weighed 18 pounds 1 ounce
  • He started to eat food on this day! He ate a few bites of some fruit puree, some noodles, and then a whole container of baby food squash! How exciting!
  • Mommy got to spend the night with Laura Anne, who has been spending lots of time with her grandparents.
  • Chris spent the day at the hospital while I went to the park for a break. (See post about that below)
  • Caleb finally got to get out of his room for a little walk around the 4th floor. We looked at the fishies in the fish tank, and played Mario golf on the video game thingy. (I don't remember what it's called)

Sunday, April 12th

  • Caleb weighed 17 pounds 6 ounces
  • He ate two containers of baby food during the day.
  • We found out his endoscopy was scheduled for Monday morning.
  • He got another IV of albumin to prepare for the endoscopy.

Monday, April 13th

  • Caleb weighed 17 pounds 2 ounces
  • Endoscopy was performed.
  • He drank some Pedialyte from a bottle.
  • Caleb enjoyed holding a little roll of Smarties in his hand. I think it was a comfort to him. The nurses found it pretty funny.

Tuesday, April 14th

  • Caleb weighed 17 pounds 3 ounces
  • We were informed that he's still anemic even though they'd been pumping him with iron for a week. Iron deficiency can be pretty serious, so they were working hard to figure out the cause.
  • The endoscopy results showed traces of reflux. It's not too severe; he hasn't been showing many symptoms. But at least we know. They prescribed an antacid for that.
  • He started drinking from a sippy cup. He even tried holding the cup himself!

Wednesday, April 15th

  • Caleb weighed 16 pounds 8 ounces (Doctors weren't concerned about this, but I was!)
  • "Shockingly low" iron levels still. So another iron supplement was added.
  • Caleb's hair started changing colors. His roots are blond! Also, we noticed his teeth are gray. Not sure why that is, but the doctors do not think the teeth are related to the rest of his problems. His hair change, yes. That is directly caused by the malnutrition.
  • The NG tube came out!
  • Chris and I got to have a date thanks to my mom and stepdad coming up to the hospital to watch the kids for us!
  • Mommy took Laura Anne back to the house for a sleepover. :o)

Thursday, April 16th

  • Caleb weighed 17 pounds 1 ounce (whew!)
  • Caleb is drinking his new soy drink wonderfully!
  • Laura Anne spent the day with Aunt Jen, Uncle Steve and Steven and Joshua.
  • There was a rumor going around that we might go home Friday!

Friday, April 17th

  • Caleb weighed 17 pounds 7 ounces
  • His blood pressure was a little low and he was running a slight fever.
  • PICC line came out!
  • We were discharged from the hospital and after having a lovely dinner at Five Guys with some family, we went home!!!!!

And that, my friends was our adventure in the hospital. We are so thankful for all the prayers for our little guy. He continues to improve everyday. He's eating and drinking like a pro, and he's happier too. He still has many follow-up appointments like: allergist, pediatrician, speech therapist, physical therapist, occupational therapist and the gastroenterologist. But praise the Lord that he's getting the care he needs!!

Sunday, April 19, 2009

Caleb's First Easter

Day One, They found him guilty and sentenced him to die. When The crowd heard the news they shouted "Crucify". Crowned with thorns they mocked his name and nailed him to a cross. He hung there til his dying breath. Day One, All hope was lost.
Day Two, It's still and quiet. The crowd had all gone home. His broken body in the tomb, sealed with the soldier's stone. Believers who had followed him weep and question why. Seeds of fear and doubt take hold. Day Two, Disciples hide.
Day Three, His body's missing. The stone was rolled away. An angel of the Lord appeared when the women came. Trembling out of fear and joy. Amazed at what they find, they quickly run to spread the word. Day Three, He is alive!
Day One, the hill ran crimson red with blood to cleanse all sin. Day Two reminds us keep the faith when the doubts set in. What a difference one day makes, from death to victory. The cross became an empty grave on Day Three.
"Day Three" by Lord Song
Last year, I was as big as a house on Easter Sunday. I was given a stool to sit on during our special music so I wouldn't fall down or pass out. Many people told me they thought I was going to go into labor during the service. Thankfully, that didn't happen, and I can tell you I was worried about that!
Three days later, out popped Caleb, making this day his very first Easter Sunday. I was sad he had to spend it in the hospital, and we couldn't all be together, but it turned out to be a great day anyway.
I went to church with my family and afterwards, visited Caleb and Chris at the hospital.
And it wasn't just Caleb's first Easter, either! It was also this precious baby girl's first! I went to my parents house for Easter dinner where I got to see my sweet nephews and niece. Oh yeah, and their mom and dad too. :o)
We had a spontaneous Easter egg hunt. It was really fun.

A Walk In The Park

Last Saturday, while Chris and Caleb were at the hospital, I took an hour or so to go to Treaty Oak with my mom, stepdad, and Laura Anne. The weather was beautiful and it was nice to get away for a litle while.

Friday, April 10, 2009

Caleb Goes To The Hospital.....Again

It started off as a lovely Monday morning. The sun was shining and the kids and I were relaxing at the house. Then the phone rang. It was Caleb's pediatrician. The doctor himself was on the other end of the line and this is what he told me: "Caleb is pretty anemic. His protein level is half of what it should be. And there are a few other abnormalities, like his liver function. Caleb needs to be treated at the hospital." "Today?" I asked. "Yes, today. I've made arrangements at Wolfson for you..."
And thus began the never-ending journey. Upon arriving at the hospital and getting settled in a room, we were told that the rice milk Caleb has been drinking has absolutely no nutritional value. Who would've thought?? His pediatrician in Raleigh told us it was absolutely fine for him to be drinking it! The doctor at the hospital advised us to immediately stop giving Caleb rice milk. We started trying to offer a formula called Elecare to him, but of course, he wanted nothing to do with it. He has wanted nothing to do with almost anything at all since then. Therefore, an NG tube was put in his nose on Tuesday. At the same time, the nurses attempted to put an IV in. Seeing as how Caleb is a hard stick (meaning it's very difficult to find a vein) they had to put the IV in his scalp. It broke my heart to see him with tubes and all kinds of nonsense coming out of him. But now, he's getting fed the proper nutrition and we're hoping we're on our way to healthy weight gain!
By the way, Caleb weighed in at 17 pounds 1 ounce on Tuesday morning. Not good for a one-year-old! This morning he weighed 17 pounds, almost-10 ounces. But we think a lot of those ounces are fluid. Caleb has become a puffy little guy. That's because of the lack of protein. Don't ask me how that works. It just happens that way.
Caleb is having lots of blood tests done. At least a few everyday. So, because he's bruised all over from poking him so much, the doctors decided on Wednesday that it was a good idea to put in a PICC line. (Peripherally Inserted Central Catheter) Although the procedure itself is kind of serious, the PICC line itself has been a blessing. They can give him IV fluids and draw blood from it. So no more poking! And a bonus: they took the IV out of his head!
As of today, Caleb is doing okay. He's still not eating much of anything, but a speech therapist is working with us everyday to help with that. The doctors want to keep him at the hospital until he's healthy, gaining weight and eating. We don't want to be sent home with a feeding tube! The gastroenterologist wants to perform an endoscopy to look into Caleb's esophagus and stomach to see if there could be something that doesn't feel good to him when he eats. But that can't be done until he's healthy also.
So it's like a lot has been figured out, and at the same time, there's not much light at the end of the tunnel. The big question: Why won't he eat anymore?? The other big question: Why did his pediatrician tell us it was okay for him to drink rice milk????? But, we all know Caleb is getting the right care now and we're on our way to getting him back to normal!

And Laura Anne? Well, she's been having a blast with grandparents galore! What a lucky girl!

Friday, April 3, 2009

Caleb Update

Just a quick update: Wednesday I took Caleb to a different pediatrician. He weighed 17 pounds 9 ounces---still not gaining weight. The doctor was not real thrilled with Caleb's condition. He's definitely anemic and he has bronchitis. There are a few tests the doctor wanted to run some tests. Two of them were blood tests so I had to take Caleb to a lab to get blood drawn. We tried Thursday and the two ladies who were working there could not even find a vein in Caleb's arms. They poked him once and absolutely nothing came out. Then they spent about 15 minutes just trying to locate a vein. When they couldn't find one they recommended that I go to a different location that handles babies more often. Of course they were already closed for the day, so I had to wait until this morning. Thankfully, they were able to get blood out of his wrist, since he still had no visible veins in his arms. So blood is taken and we wait now for the results. Pray with me!

In other news, Caleb had a good day today. He was pretty happy, even smiling and playing peekaboo with his Grammy! It did good for my heart to see him that way.

Also, we have an appointment scheduled later this month with the Early Steps program that helps children with developmental delays. And it's FREE!! I like that word!

Wednesday, April 1, 2009

A Smiley Day

Yesterday, Laura Anne attempted to draw people for the first time. I was completely shocked to look at the paper and see this:
...and this:
She told me that it was our family. The big one is Daddy, the one to the left of Daddy is Mommy. Then there's Laura Anne, Caleb and Buddy Boy. :o) (So there's two Caleb's, I guess.)
Then Laura Anne and Granny built a replica of Laura Anne out of a deck of cards:

What a smiley day!