Wednesday, October 31, 2007

Another update

Adele lost about a half a pound in less than a week (Fri to Wed), which is not good. :( The doc couldn't find anything obvious (no illness, stomach looked/felt normal) to explain the eating problems. I'm staying home with her tomorrow to see if she'll eat better for me (since she barely eats at daycare), and I'm to keep a log of how much she eats when. If she does better then we'll let it be and weigh her again in a week. If not, then we'll start with bloodtests tomorrow and go from there.

We're dropping breastmilk AGAIN and we have to take her back to the 24-cal formula recipe. The doc wants to take her back to when she was doing her best gaining and see if that makes a difference. Also, if she's going to skip so many meals, we need to cram as many calories as possible into the meals she DOES eat. The downside to this is that we think the higher-calorie recipe is what was making her spit up, since that completely stopped once we made that change.

We gave her a bottle at the doctor's office and, thankfully, she ate it all! (One time I was happy to be proven wrong!) However, the doc was able to see something that I had commented on during the appt--Adele seems to have adopted a "non-productive" suck instead of the one she normally used to eat. Think sucking on a pacifier versus sucking long draws to actually get food. So, she thinks Adele may need to see an occupational/speech therapist at CMH to have that addressed, assuming it doesn't get better. I think we have access to OTs/STs through Tiny-K, so I think I'll call them and find out if one can attend our meeting on Monday. Maybe they can watch her suck and see if they see the same thing.

I'd like to say HI to Steve's dad, Pa Buren, and let him know we're thinking of him and keeping him in our prayers as he recovers from his recent surgery. Get better soon!

Just a few photos for fun!

I think it's time to start drug-testing the PJ designers...

Cute little pumpkin:

She's discovered her tongue, and she really likes sticking it out, especially when you mimic her!

Appointment today

The nurse called me back this morning and we're going in at 4:30 today. She said she didn't feel comfortable waiting until next week to see Adele, especially since she's eating only about 10 ounces a day. Keep your fingers crossed that we're on the road to figuring out this problem!

Oh, and Happy Halloween!

Wednesday, October 24, 2007

Doc update

Sorry for the delay in posting a post-doc update. I guess you could say that no news is good news whenever we go to Children's Mercy! It was a good visit overall. I love Dr. Hartvingsen, and not only because she talks as rapid-fire as I do. Like Dr. Murphy (our Lawrence doc), she's not an alarmist when it comes to any issues we bring up. She's happy to hand out the facts and numbers, but it's not worst-case scenario first with her. Anyway, Adele checked out just fine and is just under 14 pounds and 24 inches. Developmentally everything seems to be on track, at least there's nothing that's making them worried thus far. Adele is doing most of what a "normal" 2.5 month old should do and a few things beyond that. She almost rolled from her back to her tummy on the exam table! She still has her hands clenched in a fist a lot of the time (when she's not relaxed), so we're going to work on encouraging her to open those up, but I don't think that's a HUGE deal. Overall, things look good!

I did manage to speak to her about everything on the list. Here's a recap:

  • Iron--She's off the iron for now. They took a blood draw (and baby didn't even flinch when they poked her heel!) to check her hemoglobin and will let us know ONLY if she needs to go back on.
  • Solids--Looks like she'll start around her adjusted 6-month age, so 9 months actual. No one is in a particular hurry to start, especially considering her senstive tummy issues.

  • Swallow study--She is on thickener until she gets another swallow study, which usually aren't given until 6 months after the last one. Since that one was right before her hospital discharge, we have another 3 months or so before they'd even bother with a new one. Our next CMH appt isn't until January, so the doc suggested we plan a feeding around her appt and maybe they can get an OT up to feed her and see how things are checking out. Although by then she'll be ready to start solids and may not need as much formula anyway. Oh well...it's status quo for now.

  • Fireplace--Yes, the fireplace is okay to use. Woo!

  • Reflux/Prevacid--The doc did increase her dose from 1 ml to 1.7 ml. I think it's helping a little bit!

  • Speaking of food refusal--No magic answer to this problem, unfortunately. She ruled out an ear infection and a few other things and said she couldn't really come up with anything to explain it. As she put it, the bad news is she doesn't have an answer, but the good news is she's not concerned about it at all. I, on the other hand, am becoming increasingly concerned because things have not improved. We're almost a full month into her eating half (at the most) of what she was eating before, and that's just not good. I know the docs keep saying her weight is fine, but at some point it WON'T be fine and I'd rather fix the problem now and not wait until it gets so bad that she's losing. I have an appt for next week to see our doctor here, but I also left a message with the nurse to find out if they want us in sooner. They're out of the office today (Tuesday) so I likely won't hear back until tomorrow. I'm about ready to ask to see a specialist of some sort. Not that I don't trust Dr. Murphy, but she can't know everything about everything and maybe a GI specialist would be able to pinpoint a cause for her problem.

  • Teething--There's no answer to the teething question either. Teething age is mostly genetic depending on when Steve and I each started teething. It can happen anywhere from 6-12 months, sounds like.
She finally got her Synagis (RSV) shot last Friday, which was a relief. Only 5 more to go... November will be a particularly heinous month for her since she'll need to get 4 or 5 shots that month. Poor kid.

Otherwise, we're all doing fine. Adele seems happy and "normal" aside from the eating issue, and hopefully we'll figure that problem out soon. We'll keep you posted!

Thursday, October 18, 2007

Iron-y

I bought a package of socks for Adele today and these are the care instructions: Wash before wear. Machine wash warm with like colors. Use only non-chlorine bleach when needed. Tumble dry medium. Use warm iron if needed. [emphasis mine]

Who in their right mind actually irons baby socks?? Who actually irons, period? Who has the time? Who has the inclination?? As if.

And in other news....

Tomorrow we head to KC for a Children's Mercy Special Care Clinic follow-up. I'm looking forward to the appointment because I'm hoping they have an explanation for Adele's sudden fussiness and food intake reduction. I have a few theories (ear infection, early teething, colic, reflux flare-up, a "phase"), but none of the symptoms of any of those problems match her exactly. So we'll see. Hopefully it's something that's easy to diagnose and fix. I don't want another answer like "oh, well, just wait and see if she gets better."

Other things on the agenda:
  • Iron--how much longer does she need to take it (the only time she spits up nowadays is when she takes this)
  • Solids--what schedule is she on for starting, adjusted or actual (age)? I'm in no hurry to start, but I want to know ahead of time so we can be ready
  • Swallow study--Does she get another one? If so, when? If not, will she ever get off thickener? Does she need one before she can start solids?
  • Fireplace--Is it safe to use the woodstove this winter, or are we risking future lung issues for her if we fire it up?
  • Reflux/Prevacid--Is her medicine dose strong enough given the weight gain between when she was diagnosed and now? Could that account for her sudden fussiness/food refusal?
  • Speaking of food refusal--What the heck is going on here?? Fix her!
  • Teething--Could she be teething already? When will she teethe, adjusted or actual?
I think that pretty much covers it. Hopefully we'll get lots of answers tomorrow!

Monday, October 15, 2007

The Eyes Have It

Adele's eyes are starting to change color from Generic Baby Blue to sort of a greenish-brown. Right now the greenish-brown is primarily on the inside, closest to the pupil, but the remainder is getting lighter. The doctor said they could continue to change until the first year, so the jury's still out on what the final color will be. Any guesses? I have golden-brown eyes and Steve has dark brown eyes, so I'm taking a WILD guess that it will be somewhere in the brown family. ;) According to this site Adele has a 75% chance of having brown eyes and a 12% chance of having either blue or green eyes, so really anything is possible. It's interesting to watch them change a little bit here and there, though!

Monday, October 8, 2007

Picture Pages, Picture Pages

Does anyone else remember Picture Pages with Bill Cosby? I think they used to show it between The Electric Company and Sesame Street or Mr. Rogers. I loved how Bill Cosby's magic marker made noise when it drew--it really WAS a magic marker! Anyway...I'm digressing, but I do have a lot of photos to share! (Was that a forced segue or what?) But first, I'll make you sit through an update.

Yes, we all survived the first week of daycare. The first day was hard for Steve and I, but I resisted the urge to visit at lunch, thinking it would just upend the daycare's routine. Buffy (the daycare provider) was really great about emailing updates throughout the day so I felt like I had a handle on things. By the end of the week, we had our morning routine down and it was easy to drop her off each day. I worked from home on Friday for the first time, and that worked well too. I had to put her in the sling at one point, but she fell right asleep and I was able to get some work done.

Last week we reintroduced breastmilk to see how that would go this time around. It went pretty well--no immediate reaction like last time. However, by the end of the week I was noticing some "changes" and she was acting a lot fussier and just different overall and I thought we'd better pull the plug on the experiment. She's started completely refusing bottles after about 2 ounces (she gets 4 total), even going so far as to push the bottle out with her hands. She doesn't even know she has hands most of the time and yet she knows how to push a bottle away. She's also started urping a lot more again, which is frustrating because she'd had a good week for the most part. Uggggh. So, because of all three factors (diapers, spit-up and bottle refusal) we thought we'd call the doc and bring her in for a quick check. The good news is she seems fine when she's not eating, and isn't lethargic or running a fever or anything. She weighed in well, too--13.5 pounds (a 1 pound gain in 2 weeks)--and seems plenty hydrated (which was a concern because of the diaper issue). The doc thinks she might have a very mild stomach bug and to give it a few days to see if things clear up. If they do, we'll try breastmilk again and cross our fingers.

The supergreat news for the week is that I found out that my insurance will cover her formula at 90%!! Woot! Woot! I'm trying to arrange home delivery service through a medical supply company and have them take care of the insurance billing instead of paying for it out-of-pocket and getting reimbursed. But even if we do have to go the out-of-pocket route at least it'll still be mostly covered. Oh happy day!

Adele is growing like a weed, and is even more alert and active these days. She's batting at the hanging toys on her bouncy chair and is doing better at holding her head/chest up during tummy time. Lots of smiles and cooing, too. She turned 5 months old on Sunday--where has the time gone!

Anyway, enough words...on to photos! As always, the full album is available here, for those of you who like to purchase them (ahem, G-ma). And, lo and behold, I figured out how to upload a video there! It doesn't have sound (because my camera is low-rent) and it's really dark (because I'm a bad videographer), but you can get the gist. The legs are the important parts, and you can see those fairly well. Hopefully I can get more videos taken now that I know what I'm doing. It may take a minute or two to load, so be patient. I hope it works!

The outfit she wore for our meet-up with nurse Lauren! Love the baby jeans (a gift from the Lincoln Pontows)!

A close-up on the cutest shoes EVER! (Thanks, Joanne!)

Just a little tummy time...

More interested in the swing's warning label than the mobileFinally, a smile caught on film!The bee makes her smile.
See??
Cutest. Baby. Ever.

Tuesday, October 2, 2007

Care-ful

Adele started daycare today! She seemed fine when I dropped her off. I wish I could say the same for Steve and I.