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  1. How Does a 2-year-old Understand Death?

    December 23, 2012 by Michelle

    My bunny came into our room in the middle of the night to nurse last night, as she has for more than 2 months now. After she was done, I asked her if she was ready to go back to her room. No response. I asked again and got a sigh in response. “Are you ok, honey?” I asked her.

    “I just don’t feel so good,” she paused, “because I’m sad about my baby sister. I miss my baby sister.”

    In August, I delivered a stillborn baby girl, Lorelai, a day shy of 6 months pregnant. It’s been 4 months.

    I responded, “I miss your baby sister, too. You know her name was Lorelai?” No response. “Do you miss her because you wish you could play with her?”

    “My baby sister died. She’s not coming home.”

    I think I said something along the lines of that’s right and hugged her. Then she asked me if she could walk back to her bed. So I kissed her and lifted her down off the bed.

    She’s repeating the words we’ve said to her, trying to explain what happened. It doesn’t make it any easier to hear them back.

    My husband had been half awake. We just held each other. She was back 20 minutes later to nurse some more, this time when she was done I let her sleep between us until I had to get up and moved her to her bed so she’d sleep longer. I didn’t even ask her if she wanted to leave.

    We were warned this would happen. We’d asked advice on how to talk to her about it and been told to be honest but simple, discuss it when she wants to, and be prepared for her to seem fine then bring it up again out of the blue as she continues to grasp the concept and think about it differently as she gets older. But I’m still not prepared.

    She’s used “I’m sad about my baby sister” to distract us and get attention at times. Within a couple of weeks I had to take deep breathes and learn to say calmly, “I’m sad about your baby sister, too. But you still have to eat your lunch.” This was not like that. This is even harder.

    My poor bunny has been through so much in the last few months. The loss of my pregnancy, her baby sister, changes in our work schedules, day care, and much more. I barely know how to deal with it sometimes. How can a 2-and-a-half-year-old? As she gets older and her ability to think about the world changes, so does her perception of this loss. That seems like an awful lot of work and burden on such a young child.

    I remember the day we came home from the hospital and told her. She had such a sad face. Nothing like a “I fell down and hurt myself” sad, or a “I wanted that toy” sad. This was one of grief that does not belong on such a small child. Looking from mommy to daddy crying as if to say, “no, this can’t be true.” Then switching immediately to avoidance, asking to play with toys, and for a day or two fighting sleep harder then any normal child does. (Think of your toughest nap time fight times 10.) I think it was the second night, we asked her why she didn’t want to go to bed. As she tried to fling herself from the bed she screamed and cried that she was sad about her baby sister. And we all cried. My milk had just come in so I offered to let her nurse. Her small body calmed so quickly as she nursed and she fell asleep. (She’d nearly self weaned until then, unhappy with the taste of colostrum while I was pregnant.) Honestly, I was grateful to have her nursing, because it calmed me, too.

    And now life continues, though it felt like it should have stopped. So much has changed and it doesn’t get better – I just get stronger. But I won’t let myself get hard. I don’t want to be that type of strong. When bunny wants to talk, I will talk honestly.

    She was supposed to have a baby sister for Christmas. She won’t. But she’s getting toys from Santa and time with family that loves her. I hope that’ll be enough for her. That she will feel loved. I don’t wish that she will forget her Lorelai, but that she will continue to love others for her whole life, the way she loves her baby sister.

    Category Uncategorized | Tags: | Comments Off

  2. Preparing for my Baby to Have Anesthesia

    March 10, 2012 by Michelle

    More than a month of sickness and two weeks after I first called to schedule, it’s done. The endoscopy/lower colonoscopy is scheduled. (The lower colonoscopy is actually called something else I can’t remember at the moment.)

    Getting the call from the scheduler yesterday saying it had made it through the channels and we could set a date was a relief at first. Finally! But anxiety crept in shortly after.

    My bunny will be put under anesthesia.

    It’s real. Less than two weeks away. She’s just 21 months old. And though I know this procedure will give us some answers blood work couldn’t, it’s still stressful. I’m tempted at times to just exercise my parental right to say, “She’s just small, no more tests!” But that would be denying her care if it turns out there is something that can/should be done.

    I’ve met moms who’ve told me they’ve been through rounds of tests to eventually find out nothing is wrong. But I’ve met the flip side also. Gut may say everything is ok, but I’ll feel a lot less guilty if I do all I can.

    I’m told someone will call before the procedure to discuss it. In the meantime questions run through my head.

    • Will I be with her the whole time? And do I want to see the procedure if I am allowed with her?
    • How long will she be out?
    • Will she wake up calmly, crying, screaming?
    • Will she feel any pain afterward?
    • what side effects might she experience?

    A friend knows an anesthesia nurse I may talk to. But I’m curious from you. Has your child ever had anesthesia? What was it like?

    Category Doctor Visits | Tags: , | 2 Comments

  3. How do you Make a Sick Child Eat?

    February 19, 2012 by Michelle

    Cold, double-ear infection, croup (scariest one yet) – my bunny has been sick on and off for about a month. And with each illness comes a lack of appetite.

    When she had her first major cold, somewhere around the 6-7 month mark, the nurse on the phone told me, “A baby’s job is to grow. But when they’re sick, we don’t worry about that. As long as she’s making wet diapers, it’s okay if she’s backing off the solid foods.”

    I don’t feel much like eating when I’m sick either (like now, since she inevitably gets me sick). However, all this illness means several weeks of reduced calories, when we’re already trying to play catch up!

    So here’s where we’re at:

    Delayed Tests & Doctor Appointments
    I’ve gotten myself a little break to try to plump her back up. Since she was sick, we haven’t done the colonoscopy/endoscopy yet. And I canceled her GI nutrition checkups that would have been Friday. But they need to be rescheduled, so we eventually have to get back on the scale.

    Eating Everything in Sight
    Once she does start to feel better, she starts eating up a storm!!! And insisting that one of the other older boys the nanny watches feeds her rather than feeding herself, she’s quite the little princess.

    Heavy Nursing
    Being sick, she started nursing a ton more, so at least when I’m home, she’s been getting lots of fatty breast milk. As she feels better she seems to be holding on to that increased nursing, and eating more table food.

    In addition, when she has been sick here’s some of what I’ve been trying to help her eat more. Some ideas from doc/nurses, others my own.

    Foods

    • Breast milk (more frequently, as liquids are easiest and it’s going to give her the most calories & nutrition)
    • Warm apple juice with a little honey
    • Applesauce
    • Popsicles
    • Non-citrus fruit
    • Frozen Peas

    Strategies

    • Stick with favorite & familiar foods suck as blueberries & mini-pancakes
    • Cut foods up into smaller than normal portions
    • Slightly smaller breakfast, or breakfast time a little later, since that tiny stomach is full of post-nasal drip in the morning./li>

    This isn’t an exhaustive list. But I’d love to know you’re go-to foods for sick kiddos.

    Category Food | Tags: , , , | 2 Comments

  4. Sweat Test, Not So Easy

    January 7, 2012 by Michelle

    Ok, so this post is about the sweat test, which we did to rule out cystic fibrosis, but I’ll start with something light from our visit.

    Just before the test, I took Bunny to the family restroom to change her. It’s a nice restroom with an adult height toilet, a kid height toilet, & a changing table. After I change her, I put her down on the ground so I can throw out her diaper. In about 3 seconds, the following happens:

    Bunny dunks her hand in the kid toilet. I hear the splash and say, “No!” quickly pick up and throw her sippy cup (instead of diaper) in the trash. Reach in to get it back and turn around again to her splashing saying, “water!”

    It was almost a nice, funny little moment before we started in on an hour-long test.

    Sweat Test Procedure, 20 Minutes of Screaming

    Once we washed hands after the toilet incident, it was time to get started.

    While the test shouldn’t be a painful one, the first 20 minutes or so was miserable. The test was in a similar room to where they draw blood, so the crying started when the technician started wiping her arms clean with water.

    After cleaning, the technician placed two metal plates, with a piece of gauze in a solution to encourage sweat underneath, on her arm. Then she attached electrodes to each one and turned on a light current (which can cause a tingling sensation) for 5 minutes. I got to hold her and the free arm down, the technician held the arm getting stimulated.

    This is when the technician brought out the iPad. While a cool concept, (they have a few kids apps loaded up and it’s wrapped in plastic to clean between kids) bunny wasn’t interested. We got a few seconds distraction at one point, but it was pretty much red face screaming, crying, and drooling.

    After 5 minutes of stimulation, she removed everything and taped a special sheet to her arm to absorb the sweat. The technician then wrapped the arm in a blanket.

    Then, it was time for arm two.

    Waiting for Sweat

    We left the room, two arms wrapped, and instructions to wait for 30 minutes. I quickly found a place to sit and nurse. Thank goodness for still nursing, cause no saying how long it would have taken to calm her down otherwise.

    After that, we managed to relax and I even got some smiles out of her. icon smile Sweat Test, Not So Easy Here’s a photo from our wait with the giant armbands. She’s looking out into the open lobby area at CHOP.

    20120107 181322 Sweat Test, Not So Easy

    When it was time, the technician came out to get us. Bunny was walking in her direction, saw her, and turned around. Smart kid.

    Anyway, the technician said it looked like we got enough, so hopefully we’ll get a conclusive result this time. Hopefully results come Monday.

    Update Jan. 14, 2011:

    Test results came back normal, not inconclusive, normal. No cystic fibrosis. Phew.

    Category Doctor Visits | Tags: , | 2 Comments

  5. Opposite Eating Habits

    January 5, 2012 by Michelle

    Our visit in December with the GI & nutritionist was the least painful yet. No blood work was truly a blessing. But, while she did gain weight, it’s still not enough. Then two weeks later we had a well visit and she was down two ounces, and her head shrunk. Ok, her head didn’t shrink, but the nurse at the well visit measured twice, so the last two must have been off.

    Latest stats:

    Age: 19 months
    Height: 2′ 4.75″
    Weight: 17 lb 10.2 oz
    Head Circumference: 17.76″

    Even on the WHO chart that weight puts her below the 3rd percentile line. CDC = 0.03 percentile.

    I was told not to worry about the two ounces, the holidays would have thrown off her eating and with me home from work she was nursing more, a good thing, but maybe less inclined to eat solids (true! She was attached to me more than before I went back to work some days! I think she’d save room to nurse.)

    But all these fluctuations are a reminder that the tools to measure are imperfect, too. And different scales & different people give different results. Still. Bunny’s tiny.

    Eating Schedule Changes

    So big thing from the nutritionist, eat less often. Yep.

    Anytime bunny asks for food, we give it to her. Made sense to us, give her as much food as she can take. But apparently, that may not allow her to get hungry enough to eat enough calories. Eating small amounts all day is how adults loose weight, we have to switch that to help her gain.

    So instead of eating every hour to hour-and-a-half, we’re spacing out more like 2 hours. 3 snacks & 3 meals. Still a lot of eating.

    We’re also trying some new things like yogurt and fruit smoothies (with flaxseed oil whenever I get my act together and remember to buy it.) Plus adding whip cream or cream cheese to her fruit since she’ll eat tons of fruit & the fruit has fiber. (Also still supplementing with fiber.)

    All in all, we’re still just trying to up calories and keep her from filling up on water.

    The Scary Part – Tests

    So the GI’s main thing, more tests. Sweat test to rule out cystic fibrosis (we go tomorrow) and lower colonoscopy/upper endoscopy with biopsy to test for celiac (since blood work couldn’t tell us.)

    I’m a little freaked. The sweat test is the “easy” one. They literally collect her sweat, but they have to stimulate her arms to get it, which involves attaching something to her arms. I don’t quite get all the details, but not looking forward to it.

    Colonoscopy/endoscopy is supposedly quick, but they put her out. The idea of my little girl unconscious like that, scary. That’s why I’m getting the sweat test first.

    Language Explosion

    The cherry on top of all this. Developmentally she’s still ahead of the curve. She’s got crazy amount of words and using 2-3 word sentences sometimes. She can handle directions for 3 consecutive tasks. She’s mastering puzzles. And so much more. But the funniest part is definitely the language.

    So while other kids may outpace her in physical growth, she’s working hard at growing that little brain.

    Category Doctor Visits | Tags: , , , , | 3 Comments

  6. 3 Specialists, But Few Answers

    December 15, 2011 by Michelle

    In the 2-and-a-half months since I’ve written, we’ve had visits with 3 specialists — gastroenterologist, nutritionist, and endocrinologist.

    My delay in writing started after the first two, GI & nutrition, because I felt overwhelmed by the visits. I walked in feeling like I was nearing the end, just a few people to say, “Yep all tests look fine, she’s just small.” But it was the beginning of more stress. We did these visits back to back in what ended up being close to 7 hours between travel, visits, blood drawing, & lunch with no nap. Bunny passed out in the car before I left the parking garage. We both napped about 3 hours once we got home.

    Now, on the eve of follow up appointments with GI and nutritionist, I’m finally getting my thoughts reorganized in a blog post.

    Here’s the quick rundown:

    Early October: GI & Nutrition

    GI actually uses the term “failure to thrive” my heart sinks. Says we have to try to get her caught up by age 3 because it can affect the rest of her life. Good news, head circumference is good, so her brain is growing well. Prescribes a medicine for acid reflux in case that’s keeping her from eating. Orders lots of blood work & refers me to endocrinologist.

    Nutritionist brings to light the fact that bunny being constipated some days could be a huge issue. That tiny tummy only holds so much. If she’s constipated, no room for food & she won’t eat. (this makes much more sense then the “maybe it’s GERD” from the GI, at least to me.) We get tips to add about 30-40 more calories a day, meal time tips, & told to give her a fiber supplement. She also reinforces something I read online, that breast milk will help with weight gain more than whole cows milk. (Though cows milk is ok, too, breast milk is better.) So glad I’m still nursing 2-3 times a day.

    We decided not to fill the acid reflux prescription, but focus instead on the fiber. With no other symptoms but low weight to go on, we can’t bring ourselves to give her medicine.

    Blood Test Results #1

    I was told to call for results, that they wouldn’t call me. 2-3 weeks later when I still had neglected to call, the nurse called and left me a message. Another 2-3 weeks later I finally call back. Mom fail.

    Results were mostly ok. They still can’t read the celiac panel, but nutrition looks good–except Vitamin D is in a gray area. It’s in the normal range, but the low end of the normal range.

    We increase Vitamin D supplement. I feel guilty about the 4-5 weeks she could have been getting Vitamin D if I had gotten my act together & called a few days after the test. Nurse says if it had been a major worry, they would have called me back more. I still feel guilty.

    Late November: Endocrinologist

    I was feeling okay going into this one. I figure she must have grown since her clothes are looking short in the arms & legs.

    We measure. More than an inch taller! Yippee! She’s lost weight. Only a few ounces, but still, how could she be taller and even skinnier than before? She should have gained, so in my mind it’s almost like more of a loss. The weight for height curve is looking even worse. I haven’t even met with the doctor yet, and I’m stressed again.

    Once he does come in, he says the weight looks like more of an issue than the height. (Height would more likely indicate endocrine related issue, weight, GI.) Also, he notices her soft spot hasn’t really closed in as much as expected at this age, could be delayed related to rest of her growth delay. (My brain flips back to Vitamin D guilt.) He orders blood tests but warns me that growth hormone is hard to test with blood work. There are 2 factors they can test with blood. If both are low, most likely growth hormone deficiency. If one is low and one normal, could be growth hormone could be caloric/nutrition deficiency. Essentially, inconclusive. He tells me it’s obvious she has a good appetite (she nursed almost the entire visit.)

    Guess how the blood work comes back. Yep. Inconclusive option, could be growth hormone, could be nutrition. There’s another more involved test, but it doesn’t sound fun, and he doesn’t think it’s worth it yet. We’ll keep tracking height and seeing other docs, and unless something major happens, we don’t go back for another 6 months.

    Tomorrow: GI & Nutrition Follow Up

    Please have gained weight in the last 3 weeks. Please. Please.

    At one point in the last three weeks I coated blueberries in olive oil and added a touch of whip cream just to increase calories on a food I know she likes. We don’t generally do dessert, but we give her ice cream one night just to sneak in a few more calories. I’m sure this is the wrong way to do it but I’m feeling desperate.

    I’ll know more tomorrow. I doubt I’ll know much, but at least I’ll know her weight.

    Category Doctor Visits | Tags: , , , | 2 Comments

  7. 15 Months – Still Small & Growing

    September 27, 2011 by Michelle

    Aside from the shots, the 15 month checkup last Friday was easy compared to our last few. Our pediatrician said she’s done all the testing she can and thinks it’s probably genetics (though we still have the specialist appointments next week) so there isn’t a lot left to say.

    Latest Stats

    Height: 28 inches
    1.49 percentile CDC
    1 percentile WHO

    Weight: 17 lbs. 2.4 oz.
    0.14 percentile CDC
    3 percentile WHO

    The printouts from the doctor give me exact percentiles to 100th of a percent on CDC and a plotted chart for WHO. I have to look up numbers on WHO charts so they aren’t as exact.

    The height is a huge jump! She’d pretty much fallen off the chart before. I knew she must have grown since she recently stopped walking under the dining room table after hitting her head constantly.

    Weight is right on track. At least on the WHO charts, she’s stayed right along that 3rd percentile line most of her life.

    So the numbers are in and still low. Until next week, there’s nothing more to do.

    Big Smart Head

    Despite her small stature, this little kid has got a good head on her shoulders. Head circumference is 40th percentile; a healthy size head, without being huge. All the better for that big little brain that has her developmentally hitting milestones they don’t look for until 18-24 months. Dancing, pointing out her nose, ears, and other body parts, and her vocabulary and beginning to string words together occasionally, to name just a few.

    In fact, she’s always been ahead of the curve developmentally. The only real challenges have been skills affected by height. Stairs took a bit long to master, for example. When her peers started climbing down, she still had to jump down each step.

    As long as I have to deal with the extra doctors appointments for her size, I’ll take the pleasure of hearing them tell me my child is quite smart.

    Category Doctor Visits, Weight | Tags: , , , , , , | 1 Comment

  8. Test for One Thing, Find Another

    September 8, 2011 by Michelle

    After a little bit of procrastination & getting through a summer cold, I finally bit the bullet and did the urine test with Grace last week.

    This was not a fun test. To do it, we had to literally attach a bag with adhesive to her and wait. She took it much better than I was expecting, and once we managed to collect & get it to the doctors office, I relaxed.

    Test Results Call – “Good News and Not-so-good News”

    As baby bunny was racing around downstairs and I was gathering the energy to put her to bed last night, the pediatrician called. “I have good news and not-so-good news.”

    Good News – She does not have what we were testing for, Renal Tubular Acidosis (RTA).

    Not-so-good News – She was positive for a Urinary Tract Infection (UTI).

    Ugh. As if having a UTI isn’t bad enough on it’s own, if she’s had it for a while undiagnosed, it could contribute to low weight gain. However, it’s a very unlikely cause she tells me. Could be totally unrelated and caught by chance!

    She also tells me, it could be a false positive. The only way to know for sure is to catheterize her and test again. She asks us to come in as soon as possible. Double ugh.

    Rush to the Doctor, to be Sent Home

    Tonight, after work (and two awful commutes with the flooding everywhere) I rushed right back out with baby bunny to have the follow up test done. Unfortunately, one of the docs never made it in today and when we showed up, no one could take us. So now, this semi-urgent test is delayed at least one more day, possibly two.

    Until then, I wait, wondering if she’s in pain and uncomfortable or perfectly fine. Though I don’t know anything yet, I can’t help but feel guilty that she may have been in pain for a long time. I can only hope the next test shows the first one was a false positive, then I only have to think about her being small.

    Update 9/9/11
    Second test showed no UTI. Phew.

    Category Doctor Visits | Tags: , , | 3 Comments

  9. 9 Month PJs at 14.5 Months

    August 22, 2011 by Michelle

    In the spring, I started buying 6-9/9/9-12 month size clothes for the summer, because I didn’t want to go through two sizes over the summer. Though a bit big, t-shirts worked. But, shorts, leggings, & pjs unfortunately I had to buy from 3-12 month in sizes depending on the brand. But her growth slowed down and really, she’s been a 3-6 month size in most brands, even though I dressed her in some larger clothing. I even have a 0-3 month skirt from last summer that still fits her.

    But this weekend, we hit a milestone: 9 month Carter’s PJs.

    For better or worse, Carter’s sizing is my yardstick. I suppose because they are consistent across clothing type & because everyone seems to have at least some Carter’s clothes. In addition, PJs are my marker of a true clothing size change because they have less wiggle room on sizing. Shorts might have stretchier waists & t-shirts will work snug or baggy. Footie pajamas can only work for a limited time.

    So about 8.5 months later than the average child, we’ve moved to the next size PJ. Unfortunately, Carter’s doesn’t start adding anti-slip grips to the feet of PJs until 12 month size. Good thing we’ve got mostly carpeted floors! Our little walker has been walking in 6 month non-grippy PJs for a few months, and has done okay, but most days this means stripping her to a diaper to run around when she first wakes up in the morning. This has been fine for the summer, but could be a problem when it gets colder.

    Growth Spurt Signs

    There were other signs of this little growth spurt:

    • Hitting her head when she walked under the table.
    • Her big belly shrinking (she tends to fatten up slightly then stretch, which means she goes up & down in pant sizes.)
    • Finding things in her little hands that were previously safe in the middle of bed stands & end tables.
    • An easier time & greater willingness to climb down the stairs (each step used to be like a little jump.)

    Oddly not on this list: eating everything in sight. I thought at one point she seemed to be eating more, but as I look back, no more so than her normal feast to famine eating habits. I’ve thought she was going through a growth spurt a few times before based on food intake. One of those times it actually turned out her growth had slowed down. (Which was right around the time I was starting to buy 9 month clothing.) I’ve come to find eating an unreliable way to predict growth spurts.

    So my next dilemma? What size to buy for fall/winter? Layering helps, but I still need to draw a line. I’ll hold off awhile, but with consignment sale season starting soon, i’ll have to decide in the next several weeks. I’m leaning toward 9 month sizes, but perhaps 12 month is a wise move to take me throughout the whole season?

    Any other moms with slow growers out there (or regular or fast growers) have some clothing buying tips? Leave a comment below.

    Category Buying Small | Tags: , | 3 Comments

  10. Blood Tests Inconclusive – More Tests to Come

    August 11, 2011 by Michelle

    After 3 phone calls in 5 days from my pediatrician (love that she’s giving us this much attention) I know very little. I’ve been up and down as she’s told us the results are mostly good but after consulting with others given us more things we need to test.

    Thyroid, blood count, and liver function were all good. However, her Celiac panel and Metobolic panel each had something that we’ll have to look into further.

    Disclaimer: The following is a summary as I understood it when it was explained to me and is unique to our situation. If you are in a similar situation, please speak with your own doctor.

    Celiac Panel – Low IGA

    The baseline IGA level (a type of antibody) was on the low side which apparently makes it hard to interpret the rest of the panel. According to the pediatrician, children with low IGA usually also have other symptoms such as chronic ear infections, which Baby Bunny doesn’t have. So it could be a fluke, but we’ll have to run this blood test again in a few months. Celiac faqs.

    Metabolic Panel – Low CO2

    Her CO2 levels were a little below the normal range. Apparently low CO2 could indicate Renal Tubular Acidosis (RTA), a disease of the kidneys. We’re doing a urine test to rule out this uncommon cause of slow growth.

    GI & Nutrition Consult in a Month

    With an inconclusive Metabolic panel, the pediatrician went ahead and ordered a Gastrointestinal and Nutrition consult. Those were difficult to schedule, but after half-an-hour on the phone I managed to get them back-to-back on a Friday morning in September. I’m grateful to have them scheduled finally so I don’t have to think about them for a while.

    I’ve included links for more information on both of the possible diseases, but I have not looked into either extensively because it is not worth it! I’m doing pretty well not freaking out, so why worry myself with details of diseases she might not have? The tests can rule things out, eventually leaving what I believe in my heart to be true, she’s perfectly fine.

    Category Doctor Visits | Tags: , , , , , | No Comments

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