The Radiologist Dr. Looove consulted agrees that Maddie needs a more in-depth scan. Dr. Loove has opted for an MRI because it doesn’t have radiation (a CT does). I had to call today to schedule the MRI, but it’s not as easy as just calling. I dialed the number and listened for the option to schedule a pediatric MRI. They not only had that option, but there was even an option for pediatric MRI with sedation. I know that the fact there is a phone option for pediatric MRI with sedation should make me feel better – that this is something they do all the time. But it doesn’t. It just makes me feel sad. Because sedation is required, the MRI has to be coordinated with anesthesiology. I should receive a call back in a few days with the time and date of the scan. Yay.
In other medical news, Maddie had another follow-up with the NICU clinic (she’ll have these follow-ups until she’s about three). I wasn’t too worried about this visit – Maddie is doing great. I was curious to see what her stats are, and I was slightly anxious to see what weird thing the doctors decided to seize on this time (last time they said her thumbs were effed-up). Her pulse ox level was 95 (good for her), her blood pressure was normal, and her heart rate was normal. Yay! She’d grown 3/4 of an inch since November, and her head had grown AN INCH in circumference. But her weight. Always her damn weight! She’s been stuck at 14 lbs 15 ounces for the last six weeks. It seems like every three pounds she plateaus. It’s beyond frustrating. The rest of the visit I kept waiting for them to bring up her giant head and little body.
The nurse that took her vitals and set us up in a room said that the doctors were fighting over who got to evaluate her, which was cute to hear. Maddie was in a (typically) great mood, so I could see why that could be the case. Two developmental specialists came in to play with her. The male doctor interacted with her while the female doctor asked me questions and generally kept me busy so I couldn’t be a stage mom. It worked for a while, but soon the male doctor was asking her to point out things like dogs and cookies, and I wanted to shout “she doesn’t eat cookies!” but I resisted. Barely. After he played with her for about 45 minutes, he asked me if she did any “tricks.” I listed off what she could do, and of COURSE Maddie wouldn’t do ANY of them for the doctors. I wanted to tell him i have lots of videos of her performing, but I resisted. We then took Maddie into the hallway so they could see her crawl and pull to stand. I set her down on the floor next to a small child-sized table, and instead of pulling herself up on it, she looked at us, waved, and then took off down the hall. She was OVER the NICU evaluation.
The last two minutes of the evaluation were spent doing typical doctor things – listening to her chest, looking in her eyes, ears, and mouth, and checking her flexibility and reflexes. The doctors kind of bent her legs around a little, and the male doctor tried to hit that reflex spot on her knee with a make-shift knee-spot-thingee-hitter thing. Then they said they were going to talk with the attendings and come back to give their report.
While they were gone, I almost told St. Grandma (who came along) my predictions for problems. I just KNEW they were going to talk about the big head/tiny body thing. The female doctor quizzed me on Maddie’s nutrition for ten minutes so it was obviously something they were keyed on. Which is fine. I’m all for figuring out ways to help her gain weight. But I think giving her at least 24 ounces of pediasure, 8-16 ounces of whole milk, breakfast, lunch, dinner, and two snacks AND ice cream every day is a lot of calories. I’d be rolling into the plus-size store with that kind of diet.
The doctors and attendings (four in total!) came back after about thirty minutes of discussing Maddie. They were very pleased with her cognitive development. She did well at interacting, and they could see that she is a happy and well-adjusted baby. They said that her fingers have improved since her last visit (take THAT stupid thumb loops!) but that she still has a slight gross motor delay (which, duh. Ex-preemie!). Then they danced their way to the enormous head/slight body issue. They said that because she is small with a large head and low muscle tone, they think there might be an underlying genetic issue.
Um, what? Back up there. Low muscle tone?
Apparently when they checked Maddie’s flexibility and reflexes, they decided she had low muscle tone (something called hypotonia). And just reading the wikipedia explanation of hypotonia and how it effects development is irritating me because she has none of these symptoms. So now she has to meet with a geneticist. Oh goody gumdrops, more tests and blood work for my baby!!! I’m so excited, ZOMG!1!! And because of her slight gross motor delay, they want her to get evaluated by Regional Center (again). YIPEE!!!
As her mom, I feel like nothing is wrong here. But I’m not a doctor (I just play one on the interwebs). I’m having a hard time figuring out what is necessary and what is excessive. Where do I draw the line? From MRIs to genetic tests, when do I say enough is enough, stop looking for problems that aren’t there? And what if I draw the line at genetic tests and there IS a genetic issue? My job is to protect her from trauma and pain. Why can’t this stuff be as clear-cut as not playing with knives and scissors? This humongous head is counting on me.
Anna Marie Hinnant says:
I hate this for you Heather. Thomas had to jump through all those hoops as an infant…but he CLEARLY UNDENIABLY had something genetic going on. My point now with him is, can we fix the genetic stuff? (no) Will his syndrome shorten his life in any way? (no) Then why torture him?
I guess in your case they may want to see if the beautiful Maddie has a diagnosis, and then you can run with it from there if you want to. I put the brakes on Thomas’s doc appts when he was about 18 months old because it started becoming clear that they just wanted to inspect him, not treat him for anything.
As for the big head/little body? Both of my kids were bobble-heads as infants and I was told that it was because all the nutrition is going to the brain, where it needs to be. When the brain is satisfied the body will catch up.
Hugs to you all – I can only imagine how hard it is.
Middle-Aged-Woman says:
I’d say if they are looking for something that they can’t do anything about, other than identify? Screw it.
Ms. Moon says:
I don’t know how you deal with all of this and keep any sanity at all. I know, I know. You have to.
I think you would have an intuition if there were something really wrong with Maddie. There’s no way that a group of doctors can actually see what’s going on with your child in even the longest exam. You are with her every minute of the day.
But it’s so hard to keep a stiff spine and tell The Powers That Be that enough is enough.
Here again, you’ll have to trust your intuition.
Good-luck.
Ms. Moons last blog post..A Soupbowl Full Of Beans
sam {temptingmama} says:
“This humongous head is counting on me.”
OMG.
You’re a great mom Heather. I hate, hate, hate that you guys are going through this. I wish more than anything there was a clear cut answer for you, but if it was my baby, I think I’d be doing the same as you… wondering about those ifs and buts.
xoxoxoxox
sam {temptingmama}s last blog post..A 459 Character Tweet
Dona says:
Too much for one little girl, too much for all three (4) of you.XXX
Donas last blog post..Ate is enough!
AMomTwoBoys says:
Dude. You should totally apply for a medical degree. I think you’ve learned enough to deserve one.
And also? FUCK. Yo guys need a break from all the crap and some GOOD news. My fingers are crossed that that will happen soon.
Oh- From now on I’m going to have to request an email when there’s an important post that I need to read. I can’t keep up. KThanks.
AMomTwoBoyss last blog post..How Awesome is THIS?
Candy says:
This really hit a chord with me. My own children, who were normal deliveries, are 18 and 16 now. But when my son was a toddler, he was very small. In the 10th percentile for height and weight. At one of his checkups, the pediatricians decided it was becoming a problem, and sent us for blood tests.
The blood work was horrible to witness, as I’m sure you know. Everything came back normal.
Then they wanted to do some gastrointestinal things, and I once again said ok. Poor baby, when I think back on it…I want to kick myself. Again, all normal
THEN they wanted to do some kind of a bone scan. I don’t remember what it iwas but it sounded scary.
That was when I had enough. My husband is 6’0, and I am 5’0. At 16, my son is about 5’5″, which is pretty much right in the nmiddle. He was never going to be a giant. But those doctors needed their cover your ass tests. I said no to the bone scan. He was perfectly normal, just small. And all worked out in the end.
I think at some point, it’s ok to say “I think we’ll just wait and see.” on certain things. Do these tests they want to provide you with an immediate action or “cure”? If they’re purely diagnostic, sometimes waiting and seeing how a child develops makes more sense. Spoken by a medical interwebz only, so take it all with a grain of salt.
Shania says:
If a big head and little body are indicative of a genetic disorder, my poor little lollipop of a son should have been referred long ago. Go with your instincts. If they can’t do anything proactive after the testing, why do it?
Shanias last blog post..Again
Andrea's Sweet Life says:
Shoot, just send them over the photo of Maddie’s killer abs, and they’ll be convinced that she has EXCELLENT muscle tone!
I’m so sorry you have to be faced with these decisions. But look at happy Maddie, she takes it in stride. So many kids (my oldest, for sure) would not handle it so well!
Andrea’s Sweet Lifes last blog post..The Meth Capital
ali says:
it’s so hard. when they are telling you one thing and your gut as a mom is telling you another. i think, though, that the teeny big-headed little girl is SOO lucky to have you as her mom
alis last blog post..the difference between #1 and #2 (and we are not talking about my bathroom habits) (y’all are gross)
Amy says:
She looks just perfect to me! My kids were born big, but teeny tiny as they got older. At one point with my oldest we were on WIC. They tortured that poor girl with blood tests, iron level checks and weight checks, grilling me about our family’s eating habits (basically asking me if I FED my child), and requiring extra visits to the pediatrician because she was so little. I finally realized that some cheese and milk courtesy of them was not worth what they were putting us through. Our Ped wasn’t concerned based on mine and my husband’s size and I wasn’t concerned either! Sometimes you do just have to draw a line!
Alison says:
I agree with Candy, sometimes waiting it out is the right option.
Once the doctors got my sister all fixed up with the right stuff after not being able to digest anything for weeks when we were born, OF COURSE she wasn’t going to catch up with my fattiness right away, no matter what the doctors did. It took her years to catch up with me physically (and she will always be an inch shorter than me). Maddie has had some enormous obstacles to overcome, and she’s doing fantastic. OF COURSE Maddie is going to need a while to catch up on everything. And I have known lots of babies with huge heads who didn’t have any genetic disorders.
What is it with small babies and their fantastic cognitive development? My sister totally beat me to the walking and talking milestones by two weeks! Maddie’s huge head is probably not indicative of hypotonia, but her enormous brain!
Alisons last blog post..Population Genetics, And How Identicals Make It A Little More Interesting
Lisa says:
OMG, how frustrating. I think I agree with the previous responses about waiting it out. If it is something that they think may cause serious problems or there would be a good fix for then I would probably opt for the tests, but if they are just trying to find something because they think there should be something wrong, then they can wait.
A good friend of mine has a little girl who is very tiny, she was off the charts little when she was a baby and young toddler. She is almost 4 now, but still very little. They sent her for all kinds of genetic testing but nothing could be found. My friend wishes she had gone with her gut and skipped the tests.
Lisas last blog post..Octuplets Born in California
Jo says:
Trust your mama instinct – it has brought you this far. Maddie appears to be thriving. Some people are just small. My daughter has always been in the 25% for height and weight and the (WAIT FOR IT) 95% in head circ. So yeah – I can relate to the big head/small body thing.
You seem like an excellent mother – go with your gut!
Jos last blog post..For The Love Of . . . .
Jen says:
I agree with the other comments – go with your mama instincts! She’s come a long way and she looks like she’s doing great. I love her expressions, she’s just so cute and those eyelashes are to die for! You’re doing a great job as her mom
Kristabella says:
That is hard because obviously you want only the best for her but sometimes enough is enough.
I say trust your gut. You KNOW your child and you know her better than anyone. Granted, you’re not a doctor, but maybe you can get a second opinion?
Kristabellas last blog post..Oh Acid Reflux, I Would Like To Kick You
Anissa@hope4peyton says:
Its a heavy little head too, isn’t it? It’s ok, you’re going to do what’s best for her and having answers (whether good or bad) is always better than letting it fester in worry about “what if”. We had to do a lot of invasive procedure to check for things that weren’t there or were possibly there or there was the slightest flicker of a possibility…and though it was tough, and some were totally unnecessary in the end…it felt better to know that the tests were negative.
Anissa@hope4peytons last blog post..Have you done something good for someone else lately?
Joe says:
That’s a tough line to walk; What needs to be done, and what is unnecessary. I hope everything works out. Hopefully the doctors are just stupid and are only trying to pad their checking accounts, and Maddie’s just fine.
Joes last blog post..Played Us Like a Fiddle
preTzel says:
My neice, who is now 11, was not a preemie but she had a ginormous head. We all thought it was impair her some how because it was THISBIG and looked lopsided. On top of that she looked like the Goodyear Tire baby. She walked at 10 months. She is a beautiful 11 year old that is going to be GINORMOUS because she is taller than my 13 year old and wears a size 12 woman’s shoe!
Go with your gut on this Heather. What is it telling you? I believe that every child deserves medical testing to make sure they’re healthy but *you* know Maddie best. It is your decision. If it were me I’d probably hold off.
preTzels last blog post..Rambling Thoughts ‘O Mine
mandy says:
my feelings have been mentioned by others above so i’ll just add that i’m sending positive and loving thoughts to you guys.
patois says:
Ditto Mandy.
patoiss last blog post..How About Giving Me a Boost?
Bec says:
I hear you on the weight gain thing. Erin’s the same, the same weight as well. We’ve been stuck here for months. MONTHS I tell you! It’s driving me nuts.
When Erin was admitted to have the NGT reinserted *rolls eyes* (can you tell I’m still pissed about that??) they did all these tests because she had one symptom – not gaining weight. It couldn’t that she refused to eat. No it was Crohn’s disease and I’d just missed the excruciating stomach ache and the horrific poop. Or maybe it was cystic fibrosis and I just hadn’t been paying attention to my daughter drowning in her own lung secretions.
Seriously, doctors need to shut the fuck up sometimes and stop panicking the parents. As if we don’t have enough to worry about without adding to that these imaginary ailments.
Becs last blog post..Getting grown up
Sue says:
My 22 month old full term baby had a huge head (90th percentile head and about 20th percentile body) and her body grew into her head. She is still tiny though. My ex-preemie now at 13 months old is almost the same way. Her height isn’t even on the chart yet and her head is about 50th or more. I agree with everyone else, go with your gut. You’re with her more than her doctors are and have been through enough to make an informed decision.
Sues last blog post..Some People’s Kids…
Kate says:
I am going to start by saying I do not have children yet, I am surrounded everywhere by them. I have nannied for three family’s in the last 15 years. I have tons of nieces and nephews. I am one of five children. I had a brother with developmental issues, I have nieces, nephews, friends, etc with babies that have medical issues, learning issues, etc.
I am just going to say only you and Mike can be Maddie’s advocate. You get to decide what testing is right and wrong for her. You spend the time with her not doctors that see her a handful of times for a very brief period of time. They are doctors they are supposed to look for things that might be wrong. Things have symptoms that if you did not know any better and even when you do know better that would make one think they suffer from every single thing out there.
You are her advocate. Take the tests you feel are right for her and above all follow your gut. You and Maddie both deserve that.
Ok off my long comment…wow just tell me to shut up already!
Kates last blog post..365/31/2009 Pure Happiness
Michelle-White Trash Mom says:
Aw sweetpea, she’s so perfect and that picture makes my heart burst. Really. You are way ahead of the game if you’ve already figured out the fact that the doctors will run tests—-until it’ insane—-because they don’t know what else to do. Keep strong, keep reading, keep reaching out. You and daddy will figure it out, work out what is best for that precious lamb…who I can’t wait to meet IRL…I am 100% with kate…you’re the advocate. Go with your gut.
I will share/call/email you with other thoughts and some of my experiences with my oldest daughter, hospitals and tests. Learn from my mistakes. xoxoxxo big love to you.
Michelle-White Trash Moms last blog post..Toddlers and Tiaras: Flippers and Spray Tans?
Crohn's Disese says:
I’m very afraid about crohn’s disease. I have some symtoms in abdominal pain, often in the lower right area, and diarrhea. Should I go to see the doctor? Please help.