Wednesday, April 15, 2009


I am interrupting my original post with breaking news. The baby pictured above is Stellan, the one I've been asking you to pray for. They are leaving shortly for Boston to be with some highly specialized heart doctors. He is going to have a risky operation. Please pray for Baby Stellan and his parents, also his three siblings. Click HERE to get updates.
I am also interrupting to ask you to pray for Kaleigh. She is the same age as Baby J, but was born really premature. She is having a surgery to fix multiple problems. Click HERE to get her updates.
Our baby is getting better, and we are so thankful. But there are so many other families out there getting bad and scary news on theirs. Thanks for praying for them too.

Hi-ho, hi-ho, it's off to Children's we go
Doot do doot doo doot
Doot do doot doo doot
Hi-ho, hi-ho hi-ho hi-ho

I just read on someone's blog that they sing/whistle this song as they get all of their children into their van. I had it in my head as we drove off to yet another appointment. Ready, Set, GO!

I dropped M off at kindergarten on the way to Baby J's appointment today and as I looked at the building (rather this was one of the buildings)I worked at at one time, I was ever so thankful that I am facing these challenges as a stay-at-home mom (with a full time job IN the house) rather than working full time out of the house and trying to fit all of this in. When Snug was a baby we spent the first 6 months in and out of specialist's due to "preemie stuff", but most of the time #1 took him as I taught 25 first graders half-heartedly wishing I was there to know what was going on. It is nice to be able to dedicate myself 100% as much as possible this time.

It seemed to take forever today, but it was the normal 2 hours from arrival at the office until we left. My mom came to help #1 with the Draycare kids while I was at the appointment. I guess I was just so excited to show Dr. K my new fat chubbier baby that I was a bit impatient! She was indeed impressed! Here are his new stats:

Length- 26 3/4 inches 5th % He had been at 26" for MONTHS, except the "we think he may have grown almost 1/4 inch" report at his last appointment 3 weeks ago. Today there was no doubt, he is getting longer.
Head-can't remember size, but 3rd%
Weight- 16 lbs 7 oz, not yet on the percentile chart, but close! This is the same weight for those of you who have kept track that our family doctor had him at last week...they are not concerned about it not having changed in the last two weeks because a) they are different scales b) he is still WAY up from the 13 # 12.5 oz we were sitting at for MONTHS. He has gained 1 lb 5 oz on his own since we left the hospital March 19, almost 4 weeks ago.

What does this mean? Well, for starters it means we continue to PRAISE GOD that he is growing :o) Ok, even if he wasn't growing we would still need to praise Him, but it is a lot easier when things are looking up, isn't it? It also means that within a few weeks (we go back in 3 again) he may be on the low-normal end of growth for kids his age!

It doesn't mean that anything has changed in his diagnosis or his treatment. He is still labeled "failure to thrive" (although my cousin and I discussed that they HAVE to put something in the blank on the computer and there really isn't anything else to "call" it) and is still on the same diet. Although clearly he is thriving he is not ON the growth chart so he is not out of the dark yet. he does have his own "growth line" now...and it doesn't go straight across and then down :o)
Baby J will continue to get a 75% PediaSure, 25% breastmilk mix. The doctor said again today that he simply cannot make it on breastmilk or formula alone. His caloric needs are still REALLY high. Why? Your guess is as good as theirs. As long as he grows and continues to develop physically he doesn't need an answer.

Just answered the phone and it was Children's scheduling department. We are practically on a first name basis now. J/K Baby J has an audiologist appointment on May 21. His speech therapist suspects he isn't hearing everything he should. I personally rack it up to MSH* that everyone else, including one of our dogs, in this house has. *Male Selective Hearing

I was so thankful for my sling today. Waiting that long to see people in a tiny room, albeit they have new and interesting toys, gets long for both of us. After he had seen everyone who needed to actually SEE him, I put Sir Cranky Diaper him back up in the sling and he immediatly fell asleep. The dietiation/nutritionalist doesn't have to see him, as much as discuss what the doctor found and then go from there. I was also thankful to not have to lug the entire carseat with me. Now that Baby J is getting bigger, that thing is getting HEAVY. It is kinda nasty out so I made sure that he had a hat on and warm clothes, but being up against my body he's getting quite a bit of warmth too.

SOOOOO, I was really happy to see the doctors really happy...I was really expecting to get to start him on solids again, but not yet. They have tested him for food allergies, which I wasn't aware of. I thought they did it with a skin test and then blood test. apparently while he was in the hospital they ran the necessary blood tests, and went a step further in testing his biopsies from his EGD for Celiac and food allergies. No worries, they found nothing!. He can still have 2 tbs rice cereal approx. 3 days a week. Poor kid is going to go to kindergarten and be eating Gerber 3rd foods. Who am I kidding? I would make it myself, it wouldn't be Gerber. Ok, I exaggerate.

Thank you for your prayers!

P.S. here is a funny for you. I tweeted it last night, but want to share it here also.

Snug "I pay"
#1 "OK"
Snug "Jesus fank you fow fooood, and fank you fow Krogers, amen."
I would normally thank Jesus for Aldi because of their prices, but the free cookie and "car" cart must be higher on Snug's list.

Some of my tweets are not coming through, so my "stories" I send out don't always make sense. I had said "Where was I? In the bathroom." yesterday not just randomly to confuse everyone. I had FIRST typed "Snug dumped the entire laundry basket of clean clothes on top of Baby J". THEN I typed "Where was I? In the bathroom." Seriously, Snug is going to kill him one of these days. First the sucker, then the laundry. Good thing Grandmommy is here to hold down the fort, huh?


Megan said...

Praise the Lord for a growing baby J! Oh and I am so sorry about our FB chat the other night. I had a diaper emergency to take care of and didn't get a chance to tell you before I ran.

Kim M said...

Yeah for good news on Baby J - increase in weight and length (can I get 3 cheers here?)
Hooray! Hooray! Hooray!

MelArcile said...

Baby J is going to have some company in going to kindergarten while on Gerber 3rd foods - Grayson! I can't get this kid interested in baby food at all! Mind you, this is after I came across an awesome sale a few months ago where I got tons for only $.25/jar. But he won't eat it. :) Can't wait to see you guys on Saturday!!