Answered Prayers

I have struggled with Caroline's health issues since the day she was born. Not just struggling in trying to manage them and make her feel better, but also struggling with self-doubt and uncertainty. So many many times I wondered, am I doing the right thing by dragging her to doctor after doctor after doctor? Am I searching for a problem that just isn't there? Am I really just a neurotic first-time mom who freaks out over nothing? The doctors certainly made me feel that way. Now we know..... I was right all along. I never gave up on my mother's intuition (with encouragement from my mom and others) and thanks to that persistence, we are FINALLY starting to get some answers.

Last Sunday morning I was making a desperate prayer seeking answers. I asked God for a sign- something, anything- to let me know I was doing the right thing and I should persevere in my efforts. To let me know that there was an answer to all our questions and that we just needed to keep searching. After 10 months of doctor visits (including 2 pediatricians, 4 gastroentologists, an allergist, and a dietician) with no definitive answers, I was definitely losing hope that we would ever find out what was going on inside Caroline. And sure enough, Sunday afternoon she took another turn downhill and started vomiting again. Sign duly noted.

patiently waiting with Nana and Aunty Em for the procedure to begin

We had seen her GI last Tuesday, who was absolutely NO help whatsoever. She basically said Caroline's bloodwork was fine, the stool test was fine, and she really thought Caroline needed to be eating solid foods so I should just give her miralax every day to mitigate the constipation. That's it. She didn't suggest any further testing or exploring other options, other than visiting with another GI within her department who specializes in motility. Once Caroline started vomiting I promptly demanded an urgent appointment with the other doctor. We saw him on Tuesday and he was absolutely no help whatsoever either. He pretty much said that he thought Caroline's issues with solid foods were 'within the range of normal development'. He too tried to blame all the antibiotics for the ear infection, and the recurring cold she's had, and the old favorite- a stomach bug- as the source of all her GI issues. I told him flat-out that this theory did not hold up, because she had the BEST WEEK OF HER LIFE in november while she was still dealing with the antibiotics and the ear infection and a cold. Those things were all present during the week of Thanksgiving, and yet she still showed improvement. Furthermore, those items were not present in August when all these problems started. He didn't really seem concerned and said if she was still vomiting after 7 days time, he would possibly consider investigating further. All in all, he was not very concerned, didn't offer any concrete advice or testing or theories about what was going on. Just like every.single.doctor we have seen thus far in Houston. 

Enter God's handiwork. After that all the pieces started to fall into place with amazing truly miraculous ease. After Tuesday's disappointing doctor visit my mom and I said to hell with the Houston doctors, we need to find a doctor in Baton Rouge that we KNOW and TRUST. My mom asked several doctor friends who they recommended and all of them recommended the same guy- a good sign. The same doctor friends then made phone calls urgently insisting that this GI make room for us in his schedule, which he graciously did. Caroline and I flew into BR Wednesday morning and saw the doctor Wednesday afternoon. He went through her entire case history, asked a ton of questions, and then offered a suggestion NO ONE had ever offered before. He felt it would be beneficial to put her under general anesthesia and perform an upper endoscopy to look around inside her. Specifically, he was looking for possible evidence of Eosophillic Esophigitis, which would have to be confirmed with a biopsy. I was terrified and relieved all at once. Terrified, because no one wants to put their kid under anesthesia...there's always that possible risk of complications. Stuff of every parent's worst nightmare. Relieved, because at long last someone was taking this seriously and seeking answers instead of just dismissing me, ignoring me, or otherwise failing to take action. And as luck would have it, scopes are only performed on Thursdays, and the doctor just happened to have a cancellation for the next day so he could take her at 6 am. Thank you God.

waking up from anesthesia was not so fun...who wouldn't be
crabby and irritable?

We checked in to the hospital at 6 am and her procedure was scheduled for 8:00. Even though she hadn't eaten a thing in over 12 hours, she was incredibly tolerant of the situation and didn't fuss too much. We had to entertain her for 2 hours in the pre-op hospital room with books, singing, taking walks, and a bit of TV. She was such a trooper. I thought for sure she would cry when they wheeled her away from me (talk about knife to a mother's heart) but she did fine. 

We waited in the big waiting room for about 30 minutes and then were called back to meet with the doctor and discuss his findings. After all the times I've had my hopes dashed, I fully expected this time to be no different and I expected he'd say he didn't see anything. But he did. First thing he told us was that he saw she has a substantial-size hiatial hernia. There's no way to tell if she's had it since birth or it developed sometime afterwards, but given all her issues I would be my life she's had it since birth. He said the hernia could possibly be the source of all her problems, or it could just be one of several contributing factors. He got a few tissue samples for the biopsy and is checking for other possible culprits. He said he is not super eager to jump into surgery for the hernia because she is so young. There's hope that she could 'outgrow' it, so to speak, in a few years. If there are other issues going on, he hopes to address those issues first to make her more comfortable, and hopefully leave the hernia alone. We will get the biopsy results tomorrow and decide what the treatment plan will be.    

after a bottle and removal of the IV she felt much better

I feel an enormous sense of relief knowing that my unwavering instincts were correct and that we did the right thing by persisting even when all the doctors basically kept saying 'eh, she's fine, it's no big deal, she'll outgrow it,' etc. I am very hopeful now that we've found a good doctor, we will finally be able to get to the root of problems and help her feel better soon. What a Christmas miracle for our family. But I am also LIVID that every single other doctor we've seen did not listen to me and take her problems seriously and try to figure out what was going on sooner. It's one thing for me to go to the doctor and say 'help! something's wrong!' and for them to attempt to figure it out and keep searching for answers and come up empty-handed. I can live with the fact that at least they were trying. But it's entirely unforgivable that she's probably had this condition since birth, with pain and suffering and discomfort almost every single day of the 10 months of her life, and NONE of them ever even suggested that perhaps she might have a hernia, let's take a look and see if we should rule that out as a possibility. Apparently hernias in babies are somewhat common....if that's true, why wasn't this addressed as a possible culprit early on? 

In the spirit of Christmas I am trying to let go of the anger and focus on the joy of answered prayers. Thank you Jesus for giving me the strength to help my daughter. Thank you for helping us find a good doctor who was willing and able to aggressively seek answers. Thank you for allowing all this to happen in my hometown where I've had the support of friends and family. Thank you for giving me hope that we will finally be able to make her feel better. Thank you for my sweet precious Christmas angel.

sweet baby

10 months: the good, the bad, and the ugly

I know so many moms who insist each time their child passes into a new stage that this stage truly is the best/most favorite. (Except I know no one who ever said that about the newborn stage. Me included.) Caroline is such an absolute joy right now, in spite of all her ongoing medical issues. She has such personality and curiosity and enthusiasm for everything in life! She is becoming more and more of a 'little person' and less and less of a 'baby' each day. It's an exciting time, as we're rapidly approaching toddlerhood. 10 months seems to be the turning point....a closing chapter to her infant days. She's not walking yet but I'm expecting it any day now, and then we'll really be off to the races. I love watching her personality unfold but I'm certainly not blind to the challenges that lie ahead. With that, here's a little snapshot of life at 10 months: The Good, The Bad, and the Ugly.

The Good

• She has finally gotten adjusted to attending mother's day out and does not cry when I drop her off anymore. Whew! Now she sees her friends happily playing on the floor and she reaches out for her teacher to take her in. No tears! I know she's having a good time, and she's even getting to test her artistic skills with finger painting and holiday art. I love how intently she's focused on her finger painting. I want to know how the teachers managed to get her to cooperate without sticking her fingers in her mouth.

• Her sense of humor cracks me up. You wouldn't think a 10 month old would understand humor....it seems like it would be a learned response as one gets older. But she definitely recognizes when things are funny. One time I was carrying her upstairs and having my hands full, I grabbed her binky and stuck it in my mouth inside out. She took one look at me and had a good chuckle. Silly mom doesn't know which way the binky goes!

• Speaking of binkys, she wholeheartedly enjoys a new sport known as 'binky tossing'. If there were an olympic event for this she would be a gold medalist. Every time we put her down to sleep we put several binkys in her crib, knowing that 3/4 of them will end up on the floor. I've watched her on the baby monitor. She chucks those things will impressive speed and distance. And then she laughs at me when I have to get down on my hands and knees and awkwardly attempt to fish them out from behind the curtains, under the crib, etc. 

• She is babbling up a storm with baby gibberish and is now happily saying 'mama' on a regular basis. Interesting though, whenever she wakes up extra early she usually starts singing 'dada'...I think she knows that mommy is not an early riser, daddy is. Better to be safe and call for the one you know is certain to respond. Smart girl. She also waves hello and bye-bye!

The Bad

• We haven't made any headway in her solid food progress. After last month's 3 week no solid food trial, she seemed to do much better during the week of thanksgiving. So I attempted to trial some solid foods again, and within a week the symptoms returned. We only lasted about 2 weeks on solids, and I grew tired of fighting with all the same issues knowing they disappeared when solids were removed. So we went off solids again, and are back on formula only. I spoke to her dietician who agreed that is the best choice for now. She can get all the nutrition she needs for now through the formula. We need answers about why solid foods cause such constipation and discomfort in her to the point that she stops wanting to eat. The dietician and our GI suggested that we meet with another doctor in the same department who specializes in motility issues. We know from her upper and lower GI tests that she doesn't have any structural abnormalities blocking the flow through her digestive system, but there are still many many reasons why and how her system might not be functioning correctly.

• She's already starting to show signs of having a bit of a temper and I know the terrible 2's will probably be a challenge. When she encounters a situation that she doesn't agree with she will arch her back and try to give me the dead fish treatment. Example: being placed in the playpen. You'd think I was torturing the child with hot coals by placing her in there. As soon as I lean over to put her in there she starts squirming and arching her back and flopping around. After I walk away she proceeds to cry with a particularly ear-shattering screech. No tears, just high-pitched screeching. And if I give her The Look she will stop momentarily, knowing it's not approved. But as soon as I turn around again she commences with the screeching. 

The Ugly

• We're also dealing with a bit of a biting problem. She likes to lean over and take a nibble out of my shoulder. Not mean or malicious biting, but perhaps just giving me a little love nibble. Regardless, it doesn't feel good and biting is not allowed and she knows it. She will lean over ever so slightly, mouth open, watching me as she's going for the kill when she knows it's forbidden. And then when I reprimand her she starts crying like I hurt her feelings. And it is REALLY hard not to laugh.

And a little lagniappe...photos from cousin Riley's 2nd birthday party last weekend at the Little Gym. Caroline had a great time. She was the youngest one there but kept up with all the big kids!

Riley was so happy to see Caroline!

Granny helped her climb up and slide down.

Daddy helped her sit on the bouncy while the big kids jumped.

attempt #37 at trying to get a decent family photo...FAIL.

Can't believe this big girl is 2 already!!

licking the window at a preschool gym...probably not the
best idea during cold and flu season. or ever.

Aunty Em was delighted to see a future
gymnast in the making!

health update

What a rough month this past one has been. We are pretty much still back at square one with absolutely no answers and still dealing with gastrointestinal issues. I kept her off solid foods entirely for a period of 3 weeks, during which we had a terrible time with 5 days of vomiting, 2 weeks of diarrhea, 4 weeks of a double ear infection, 1 week of severe diaper rash, 2 trips to the ER, and 5 different types of antibiotics. We could barely keep our head above water so solid food was not anywhere on the radar. While in the ER in early november, she had an xray done that showed she was tremendously constipated (but not impacted per se) which was causing her vomiting, and they gave her a glycerine enema. With that, she only pooped once...an ENEMA, and she only pooped ONCE. So we ended up back in the ER with more vomiting the next day, and then they did a barium enema contrast study to look for other possible problems. No problems were spotted, and between the barium enema and the antibiotics for the ear infection, she had diarrhea for a good 2 weeks, which caused the awful diaper rash. I was desperate to stop the diarrhea so I thought maybe adding some fiber to her diet via solid foods would help. She had not gained any weight in 2 months, and fell from the 68th percentile in weight (which is where she's always been since birth) to the 21st percentile. 

We started solids again the sunday before thanksgiving, with some homemade butternut squash baby food I made myself. That week of Thanksgiving she was like a new baby...she was drinking FOUR 8-ounce bottles per day consistently!! Not refusing bottles, or only drinking 5 ounces like usual. And eating the baby food too!! That's like a miracle for us! She was sleeping well (taking 1.5 hour naps consistently) and having 3 good bowel movements per day and I never had to wake her up at night to take a bottle and it was such a good week for us. The best we've ever had.

After that week, things started going downhill again. She started getting constipated, and with that she was back to refusing bottles (or only drinking 4-5 ounces), not wanting to eat solids, fussing in the evenings, not taking good naps. The only thing that I can deduce from all this is that, the week before thanksgiving she wasn't eating solid foods and she was having diarrhea, so her 'pipes' were completely cleaned out. The week after, she'd been eating solids for a week and she started to get a build up in her 'pipes' and with that we were back to all the old ways- only drinking about 20 ounces per day, forcing me to wake her up every night to take another bottle to try to get enough formula in her. This make me believe, it's not a matter of WHAT solid foods she's eating that could be causing problems, not a food intolerance issue. It's the solid foods in general. When she eats ANY type of solid food, she gets constipated, and then all the other symptoms come back. She was previously taking lactalose on a daily basis, but that didn't help. Now she's been prescribed miralax- "take as needed for constipation". Which pretty much means, if I don't give it to her every day, she'll be constipated.

I don't know what to do about solid foods anymore. I would never be able to spot a food intolerance/sensitivity problem because she has constipation/decrease in appetite on a baseline case. Plus the double ear infection which also causes fussiness/decrease in appetite etc. I am struggling every day to get her to drink enough formula, nevermind the 5 servings per day of various solid foods recommended at her age. I am about ready to throw up my hands and give up on solid foods entirely until someone can figure out why solids cause such terrible constipation and all the other problems that go with it. I will have the only 10-month-old in the world who doesn't eat solid foods.

The double ear infection is another mystery that may or may not be related to everything else. She's had it for over a MONTH now and it's not getting any better. We tried 4 different type of antibiotics....didn't make a bit of difference, except that the amoxycillin made her even more miserable b/c it caused terrible diarrhea and diaper rash. Our pediatrician referred us to an ENT specialist, but she was a big fat waste of time. We saw her Monday, and she pretty much asked a few questions, looked inside Caroline's ears, and then said 'sorry there's nothing else we can do besides put tubes in her ear.' Great. Before we resort to putting my daughter under anesthesia for surgery I think I'll get a second opinion, thank you very much. So we have another appointment with a different ENT next Monday. Also an appointment with her GI on Tuesday.

Someone better start getting us some answers soon. I am so sick and tired of getting the run-around, the brush off, the dismissal. I'm sure some of my friends (and probably the doctors we've seen too) think I'm just an overly-paranoid mother, a hypochondriac who freaks out at every little symptom and thinks her kid is dying. There have been so many times when I doubted myself as well...what if I AM just freaking out over nothing? What if I'm looking for answers to a problem that doesn't exist? But that one good week we had during Thanksgiving proves that I'm NOT overreacting. I've seen what she is capable of when conditions are right and she's feeling well. I've seen what 'normal' looks like and how she should be acting/eating/drinking all the time. I'm not crazy. I'm not making this up. I'm not freaking out over nothing. She is not well, and someone needs to figure out what's going on ASAP. I have dragged her to specialist after specialist after specialist and no one has pinpointed it. My gut feeling is that whatever she has (Crohn's disease/Celiac/Hirschprung's etc), it's a very mild case of it, and that Caroline does not have any of the 'typical' symptoms that would be easy to spot. My worst fear is that what she has will be easy to miss and/or misdiagnose, and that this will drag on for years and she will suffer unnecessarily for years before they finally figure it out. 

Through it all though, my sweet baby has been such a remarkable trooper. She is such a sweet happy smiley baby that I'm sure the doctors look at her and quickly dismiss me when I insist she's in pain, something's not right, etc. What the double ear infection has taught me is that just because she LOOKS fine doesn't mean she IS fine...she just has an incredibly high tolerance for pain. Most babies are terribly fussy and cry a lot and don't sleep well when one ear is infected....my daughter has been living with BOTH ears infected for over a month and she's hardly made a single whimper. 

Fa La La La Christmas Fun

Despite the fact that it's a sweltering 82 degrees over here we are doing our best to get in the holiday spirit. Last week we had exactly 2 days where the temperature dropped below 50 so you know what that means....quick, hurry up and wear all the winter gear while you can! Braving the cold front to go out for a morning run, I bundled up the bambino in what can only be described as arctic tundra gear appropriate for polar bear hunting. I'm surprised the Old Navy here in Houston even bothered to carry this item...seems like a swing and a miss on targeting your shopper demographic. But I with my cold-naturedness scooped it up when it was on sale, figuring you can never be too careful with a baby.

Ready for the sub-zero temps of the arctic tundra...
or a jog through the neighborhood here in Houston.

What appealed to me most was the attached hat/mittens/footies. Finally a cold weather ensemble Caroline can't take off! Thus far she has successfully managed to remove every.single.pair of socks and/or shoes that I attempted to outfit her in. 90% of the time, when the weather is still swelteringly hot, this isn't a grave concern. But every once in a blue moon a cold front swings through and our morning jogs are downright chilly, so I was happy to have the arctic snowsuit ready for action. She has a nice collection of fleece outfits, also largely unused thus far this winter, so we had several wardrobe changes during our little cold snap last week to try them all out. 

Mittens off, check. Socks and hat coming off soon, check.

We've been reading the 12 Dogs of Christmas several times each day. Thanks Nana! It's her favorite book right now. As much as she loves doggies Nana knew this book would be a hit.

Alas there is no pug in the 12 Dogs book. A grave
oversight on the part of the author.

Saturday we attended the Family Fun Day at Bill's office. It was quite an impressive event...when old uncle Exxon decides to throw a kiddie fun day, it's go big or go home. There were events, activities, and foods spread out throughout the entire campus. 

This is where Bill works. Poor guy has a tough life.

We made a beeline for Santa because I wanted to get a picture while her outfit and her mood were both still in good condition. She didn't know quite what to make of Santa. She wasn't scared or unhappy, but she didn't grin at him like she does to the  87847952 other strangers she has greeted in her life.

She was also a bit confused by the giant mouse( I think? ) that is the Rockets mascot. But she cooperated for a few photos with him.

First the creep with the beard, now this?

At least I have my mommy and daddy with me.

There were a ton of attractions for kids of all ages. Gingerbread decorating, race car simulators, lots of arts and crafts, Christmas movies on the movie-theater-size screen in the teleconference room, dessert bar, caricatures, and mini train rides. We chose to participate in writing a letter to Santa (and a separate thank you letter to military troops), as well as the train ride.

I will now sacrifice my dignity and climb aboard
what amounts to a caboose of go-karts...

.....all because of this smile.

Saturday night we visited with friends and watched the kids play and ate burgers. I couldn't help thinking how different life has become...there were only 4 kids under age 3 there but it might as well have been an entire army of anklebiters! It was a constant game of hot potato trying to keep them all in clean diapers, fed, entertained, and generally content. But it was so fun watching Caroline interact with the other kids, now that she's old enough to play! She was the youngest one there but fit right in.

Tommy's playroom is a kid's dream! Tons of toys!

Tommy shared his cars with me.

And Paige showed me how this stacker works.

I've started wrapping presents, there's good Christmas movies on tv every night, my candles are always burning and the tree is always lit...it's beginning to look a lot like Christmas! Now if only we can get some good cold weather to stick around for more than 48 hours....it would be a crying shame if Caroline only got to wear her snowsuit once!