Thursday, March 31, 2011

The GI Dr

HOORAY!!! 12 lba, 9 ozs. The GI dr was a fantastic appointment! According to Dr. Seth Marcus' records, Ellie gained 2 lbs and grew 2 inches since December. She seemed 100% fine to him. According to the chart he had on her she had stayed on the same curve. He thinks perhaps the nutritionist was comparing Ellie to a normal baby growth curve, which is horribly inaccurate. So the pedi and the Gi doctor both agree Ellie is doing great. Only the nutritionist seems to have other ideas. So she's outvoted lol. In any event, Dr Marcus also gave us the go-ahead to add some butter to her veggies and some heavy whipping cream to her fruits. Yum! He also said we should check back in 2 months. He did say he was going to see if he could find a more accurate chart by which to measure her, but the growth curve he had was steady. SO HOORAY! Good news all around. :-)

Also on the positive side of things, we are expecting a tooth to pop through any day now. The last few days Ellie has been cranky and extremely clingy. No high fever, only 99-99.4. No big drool. She wouldn't take her fingers out of her mouth but what else is new. Last night she was inconsoleable so in a last ditch effort to contain the screaming I put baby orajel on her. 180 degree turn around. Entirely different baby. Happy, laughing, playing in her exersaucer, went right to bed without incident.

I also called the pedi anyway since her 10 days of amox was up and she had no change. His idea? Might be allergies. Isn't that what I said two weeks ago? Ah well, to be continued, as always!

Saturday, March 26, 2011

Time to eat Crow

I stand corrected, and I will honor the correction. It could be a fluke but Ellie's food intake has really skyrocketed. We've alternated between solids and bottles and it seems like she's eating more than usual. Hubby even said he felt like she must be having a growth spurt. Her sleeping arrangements are all off, she screams at random, etc. Could also be teething or her cold. She has too much going on at once to really narrow down what's truly going on. I measured her and it seems she's add 2 inches to her length from what I could get from her. Its hard to measure an 8 month old! I'm interested to see how this all shakes out in the end. Do solids really work for a reason I haven't deciphered yet? Is she really teething? Is it really a cold? All this and more... stay tuned!

Wednesday, March 23, 2011

just venting

Maybe I'll even get some answers. Today I had a "talk" with the nutritionist on our feeding team who proceeded to tell me Ellie is malnourished (although she said not from lack of trying on my part). Ellie has been 24" long for months now, with no linear growth and she's about 2 pounds away from her goal weight. The nutritionist also said it was time to add back in solids. I don't know why because (1) they detract from her heavier caloried food and (2) she can eat solids, they aren't the problem. She has mastered that developmental milestone. In fact, today she crawled a bit, maybe an inch or so. If they want her to fatten up why are we cutting out the fattening food? I'm also upset that she asked if the pediatrician mentioned anything and I said, no he was perfectly content with her growth. Which means someone's wrong. Either pedi has no idea what he's talking about or the feeding team is really over-shooting her goals. I did the math and to me it seems her weight is fine, for her. In either event, they want me to make a follow up appointment with the GI Dr. I call him the feeding tube doctor. I can't imagine they'd want to stick a feeding tube in her at this point, post-op, but who knows anymore. Clearly not I. And it gets so much better- the nutritionist said if it wasn't malnourishment that was causing her stunted growth (yep, she used those words) than it was likely to be something else and we would need to see an endochrine doctor. Fantastic. Just what I need- another doctor in the Ellie soup. It just breaks my heart. Like she doesn't have enough problems, we have to keep adding to them. And of course my stupid behind thought surely post-op everything would be fine! She'd gain weight! She'd grow! I guess I just put too much hope on one operation. I feel like its too much. I dont want to play the "I have a special needs baby" game anymore. She's such a happy baby with no idea what's going on and that almost makes it worse for me.

Saturday, March 19, 2011

Rock and ROLL

On St. Patrick's Day, Ellie woke up and decided she wanted to roll EVERYWHERE. Under the futon, under the coffee table, inbetween the speakers and the tv. I'm really proud my daughter has decided to be mobile. She gets frustrated she can't crawl yet; she rolls on to her stomach, screams, then drops her head to the floor and cries. Still, this is the first step towards crawling so she may not skip it afterall.

I mentioned this to our pediatrician. (By the way, Ellie was 12 lbs 1.5 ozs on March 18) I said that her physical therapy evaluation is next month and that she does not sit unassisted to the point where I trust her just yet. He said not to worry, he doesn't expect babies to sit up on their own until AFTER they become mobile, because thats how they build up muscles. He also said he doesn't expect to her to become mobile (crawling) until at least 9 months at the earliest. And finally he said not to worry about the evaluation because she's only "at-risk" and there is no actual problem at this stage.

Tuesday, March 15, 2011

physical therapy and babbling

On the plus side, her babbling really has picked up. We hear new sounds, new volumes all the time. I wasn't sure how her hearing and speech would pick up since she's only 7 months but it really has made a difference.

A small piece of her stitches fell out this morning. It didn't seem to bother her at all. I was just glad to see she's healing.

I'm currently losing a battle with my pity party. I fight it pretty constantly, and some days I'm able to look at the silver lining and just revel in the fact that I have a gorgeous, well-behaved, good-sleeping, happy baby girl. Other times, I just cry about how life isn't fair, and how such a darling girl doesn't deserve so many problems.

My friend just came back from her ultrasound. She has a beautiful baby boy on the way, and I couldn't be happier for her. Of course this just reminds me of the nightmare sonogram I had, and how unfair it is that my girl has problems. And I don't want to hate her or be jealous of her, and if I even start to feel that way it makes me feel even worse for thinking it.

Today I also got a call from our social worker that in 1 month Ellie will have her physical therapy evaluation. From my observation she needs it, which breaks my heart.

To add fuel to the fire, my husbands grandmother died. Time to go host my pity party.

Friday, March 11, 2011

Weigh and pity party

Ellie weighed in at 11 lbs, 14 ozs this morning. At first blush it seemed like 10 ozs in two weeks. But then I started doing the math. According to Pat, our pediatrician's nurse, her last weigh in was February 21, weighing 11 lbs 4 ozs. One week later was Feb 28th. Two weeks later was March 7th. So this was almost 3 weeks later. At any rate, I was really hoping for 12 even, at least! Which leads into my pity party. After 6 months, according to my research, the weight gain is about 1 pound a month, potentially 1.25. So if it was not quite a pound and not quite a month, in theory, she's on track. I'm terrified she's going to end up with a ng, post surgery. Then I really will feel like a failure. Failure to thrive becomes failure to act as an appropriate parent. She is getting a nice Buddha belly though. :)

Thursday, March 10, 2011


The ENT office called and said they agreed to doing an ABR, the scheduler will call to let me know when. Fine, if its sooner. If its not Im going to say we already did it!

Wednesday, March 9, 2011

ABR Hearing, Social worker

So. First thing this morning I called ChoA and requested an ABR test. First available? April 4th. Yep, after all that I managed to shave off a whopping FOUR days of waiting- from the appmnt on April 8th to the test on April 4. Go me. Shortly thereafter we got our routine visit from our social worker (in the State of Georgia, if your child is deemed special needs or medically fragile or the like, you are automatically put in touch with social services). I like our social worker, she's a lovely person. She often, however, offers no insight. She just asks if Ellie has hit certain milestones, which technically can be asked over the phone. In either case, I have to straighten up a bit, work out Ellie's nap schedule so she's awake when the worker comes, and throw the dogs out when she arrives. Today was worse for the dogs because it was POURING outside, and even though I let them into the sunroom, they only scratched and cried at the door. Awful. Then we had to go through the monsoon to Walmart to pick up her can of polycose which wasn't ready yet- evidently the pharmacist said 2, I heard 10. I also got texts from my husband explaining what a bad day he was having. Now that I finally have a "break," I get to read ignorant posts on the internet. Like how being gay is a choice, and they're choosing to be damned! Awesome. I'm also reading about all these babies leaping through their milestones- pulling themselves up to standing, saying new words, crawling, sitting up unassisted. I know better than to compare Ellie to any other baby, not just for medical reasons but just for sanity's sake. It still breaks my heart. I know it shouldn't matter but I know she'll be behind, and I am doing everything in my power to make it so she's not. But it's going to happen. And everytime I hear about the progress of another baby it just makes it that much more evident. So I'm stressed. In a bad mood. On the positive side, another PRS baby went through palate and ear surgery and came out with flying colors. Always relieved to hear another baby on the road to recovery. I will try to focus on that.

Tuesday, March 8, 2011

Hearing follow up

This is why God chose me to be Ellie's mom. So yesterday the entire hearing situation was a fiasco. Today was a new day. Today was the day I kicked medical butt in the name of my daughter. Again. I'm almost getting tired of having to grab the medical community by the collar and shake them. Anyway, audiology called to schedule the appointment and I left a message for the audiologist. She returned my call and said they want at least 2 attempts on record before giving in to an ABR. She also said they were only waiting 4 weeks, which wasn't that long. I reminded her that in the world of infant development 4 weeks is much too long. She said she would talk to the physician on Thursday about my concerns. I called the pediatrician and said Ellie failed the hearing test and I want an ABR done pronto. He agreed and put in the order. Tomorrow I schedule the test.

Monday, March 7, 2011

Hearing follow up

Ellie failed her hearing test. They checked, the hearing tubes are open and in place. If this gets cut short, I'm sorry. They stuck plugs in her ears, she failed the test. They asked if she seemed like she could hear at home, and I said yes. So they put her in a sound-proof booth with a speaker on each side, while I held her in my lap in the middle. They brought in a girl to sit with us so Ellie would be "distracted" from hearing. Ellie was way more interestd in the girl. So the girl left. Then Ellie got antsy. The girl came back and tried to hide, Ellie was still mesmorized by her. Then Ellie figured out the game they were playing and just kept looking back and forth at the two speakers. The audiologist tried to tell me not to worry, that the test is only considered "inconclusive." Telling a mother not to worry about her child is like the sun not to shine. They said perhaps she's just not used to hearing yet. Maybe the tubes are interfering. Maybe she's not mature enough to understand what they're doing during the "social" hearing test (ie- you hear something and therefore respond; often at this stage infants pick and choose when they want to react to sound, which is why learning their name is considered a milestone). Then the audiologist asked if she was crawling or sitting yet. I said no crawling (only when necessary) and yes to sitting. Although honestly I don't feel she does that as well as she could. So then the audiologist said that perhaps she's just developmentally behind. Great. Now she's deaf and slow. In either event, she has to come back in a month to see if she's gotten used to her hearing and matured enough to take- and hopefully pass- another hearing test. I suppose part of this is my fault, I could have waited another 2 weeks to schedule the hearing test but I was just so certain she would pass I wanted it as early as possible. I had been talked out of my worry, thinking perhaps she had learned knew words and sounds, that she did startle when she heard something out of the ordinary, she did get upset when loud noises were around but maybe I'm just diluting reality. Guess I really better buckle down on sign language. And if you're wondering how I am, there are so many emotions going on there aren't enough words to express them.

Friday, March 4, 2011

Surgical follow up

The appointment went exactly as I thought it would- he said she has recovered nicely and if we want to let her try to drink from a normal bottle she can. I explained she already had mastered sucking so that would not be an issue, but keeping her hands out of her mouth (as well as other objects) was a battle. He said don't knock ourselves out trying to keep things out of her mouth, and that the stitches should fall out next week or so. He also said the next time he would see us would be at the 12-14 month mark for speech therapy. Depressing. The assistant gave me the speech therapist's card and said to call soon because it takes a while to get in to see him. I can only assume that's because much like the rest of the children's hospital specialists in Georgia, he is the only one. In either case, trying not to look a gift horse so to speak so just enjoying that the surgery hurdle is now behind us. It was a big one. The big focus of my anxiety now is Monday.

Monday is the follow up hearing test. I am heartbroken to think Ellie may have serious hearing problems. Sometimes I think that's the most ridiculous thought in the entire world because she jumps when I even talk unexpectedly. She startles when I laugh hard. She did say "mama" before she even got her ear tubes put in and she's a big fan of saying "oooooh." Sometimes it even seems like she's trying to talk, even though its obviously pure gibberish. Other times, like when she just grunts, or sounds particularly nasally I think, she can't hear at all. She has no idea what real voices and sounds actually sound like. I guess we'll find out Monday.

I am taking Ellie with some other babies and their moms to the Tennessee Aquarium tomorrow, so it will be a good chance for both of us to see how well she's doing.