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I may be the only person in Arizona who is excited to see 100 degrees because it means the end of RSV season!! We are taking our first short outings which have included the Phoenix Zoo, Fry's Marketplace and the Vista Grande Library for story time.
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G Jane's Story |
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![]() First trip to the ZOO!!!! I may be the only person in Arizona who is excited to see 100 degrees because it means the end of RSV season!! We are taking our first short outings which have included the Phoenix Zoo, Fry's Marketplace and the Vista Grande Library for story time. ![]() Gracie the Explorer....this was taken moments before her first true throw-herself-on-the-ground fit. But then she had a bottle and watched the monkeys and we both felt much better :) ![]() First grocery shopping trip with mommy! ![]() She was a great helper and thought the store was so cool! Gracie likes to pick out her own food and have a snack on the car ride home :) Now we know the check out ladies and they gave Gracie a special pink balloon on our most recent trip. Pretty cool! This is your new blog post. Click here and start typing, or drag in elements from the top bar.
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![]() Easter morning photo shoot :) Well, I am happy to share some fun news today. I will start with the biggest thing that just happened: out of desperation for some allergy eye drops (for me), Gracie and I took our first-ever trip to Fry's (that's our grocery store here)! And no one (me) cried or had a nervous breakdown- phew! I just needed a few small things so I opted to keep Gracie in her stroller (avoiding the whole cart/germ/where do I put the suction machine? issue), grabbed a basket and took a deep breath! I know I must sound like a crazy person. It's just a grocery store for heaven's sake. But I am like a "new" mom at all of this normal stuff. I often wonder if other new moms with infants were nervous the first time they took their baby out? I was scoping out the other mommies in the store- some had the car seat wedged on the top seat of the shopping cart. Gracie is too big for that, I think..... or I guess I could bring my little cart cover that has yet to be used. It's a conundrum, I tell you! Hee :) So my little system worked this time and no one stared at us or even noticed us as far as I could tell. Perfect. I dare say I even browsed! It was so liberating! Gracie was very interested to observe everything. It was 10am so it was a nice quiet time of day too. She gets a little freaked out by lots of new people at once, unless it's kids on a playground. I almost took a picture to mark the occasion, but I figured that didn't fit too well with my whole "trying to be normal" motif today so I refrained. So we found a nice quiet check out lane and Gracie was giving lots of smiles to the cashier (who showed us the huge tattoo of his baby's face on his arm.....kind of sweet and very Casa Grande!). So anyway, it is only 11:30 in the morning and we have already had a big day of meeting friends at the duck pond and a new adventure! Now, feeding: So we tried that 30 cal formula recipe for two weeks which ended in disaster (thank you GI doc). Then we spent a good 5 days trying to get her tummy to settle down. Then I took another week to work back up to a 24 cal mix with 1 tsp of duocal in each bottle. Humph! And it just really frosts my cookies because she was gaining weight before and now this has caused another plateau. However, she has gained 2oz in the past week or two and she is eating two decent sized meals each day. Hey, at least it's a gain. During this time she also had to get some vaccinations and had a brief tummy upset after trying some food that was too rich. It's always something! So as of last week she is 16lb 11oz. I am going to throw a party the day she hits 17lbs! Now fun: We have been getting out and enjoying the last of the "cool" weather. Last week we met some friends up at Arcadia Park (near Ramsey's office) and had a picnic at which Gracie actually ate! I was really surprised as distractions and/or new locations usually prove to throw her off eating. So yay for that! We had another picnic last week at Desert Breeze Park (which has a train) with Grandma :) And then we all stayed at my mom's house Saturday night so Ramsey and I could go out for our anniversary. So lots going on! We had a crash day on Monday after all of that, but we all had lots of fun :) Oh, and I have to add two more things: we moved the Lamb Swing- a central napping/feeding contraption- into Gracie's bedroom. Anyone who has been to our house this year will understand how huge this is for nap time purposes. And...I am going away this weekend for the first time! My mom and I are going down to Tubac for some R&R. It's my first time away and I feel great about it. Ramsey and Gracie will have lots of fun together :) So other than that, Gracie's favorite pastimes include baby sign language, playing chase with mommy and daddy, hugging her favorite Pooh Bear, chasing Trax the cat, getting into all of the cupboards, exploring the house, pulling apart boxes of envelopes and Kleenex and going down the slide by herself! Yahoo!!! http://youtu.be/4ISCLQOkhDU ![]() Gracie and Pooh in the back yard ![]() A snuggle for kitty.... We are having a little power struggle here and Gracie is winning. Time for another play picnic to allow G to reclaim her autonomy with regard to food. It is just so hard to know if her lack of interest in her bottle over the past 2 days is from the new 30 cal formula recipe, teething, normal kid stuff or what?! Oy. This ebb and flow of eating and weight gain does seem to go in spurts, but every time we hit a valley it is SO difficult not to freak out. Because the doctors (who I just don't trust) will freak out as they cling to their precious charts. The only people I trust are our OT and a child psychologist form Germany who I consult with. Gracie is hydrated, energized, happy and PRECOCIOUS ;) She's a little skinny, but aren't there other kids out there who are totally hitting their developmental milestones but just don't gain weight super fast? I bet there are. Meh. I am really being anxious in anticipating our GI doc's response to my latest weight/food update. I just hope she has something useful and supportive to say.
This long journey is getting the best of me today, but we are trying to focus on fun stuff like going to the park and celebrating Ramsey's birthday! We have just tried SO many different combinations, formulas, foods, fortifiers, tactics, doctors.... and you know what?? I bet we would have ended up right where we are anyway! Ha! The one thing we haven't tried is a feeding clinic as this is pretty aggressive and Gracie does not necessarily need that kind of experience at this young age. I am considering looking into a local child psychologist that specializes in feeding, but I am not sure if they exist here. In Europe, they do not insert a feeding tube into a child without a specialized psychologist and an exit strategy. The way feeding issues are dealt with in the States is abhorrent to me. It's no wonder one of my online, tube-mom-friends is studying to be a patient rights lawyer. Okay, that's my rant :) I consider myself a "glass-half-full" person, but I would be remiss if I did not include the darker moments I have had. Because if another family struggling with similar issues hears of our story or reads this blog, I would want them to know the WHOLE story. Like that we don't take Gracie out much because she doesn't have any extra weight to help her through an illness. Or that I have some mild PTSD symptoms. But I will end with this: our good days and good times are far outweighing the bad. Gracie is a joy and the light of our lives and we will keep fighting to help her be a healthy, strong, well-adjusted eater! ![]() Good morning birthday girl!! Happy First Birthday Gracie Jane!!! On Saturday, March 3rd we celebrated the big day!! I cannot believe it has been one year! I think I officially have a strawberry cupcake hangover! We have so much to celebrate and we really had a fabulous day :) This week we enjoyed visits from Grandpa Gerard, Scout and "Grandma" Jane Tock, and, of course, my mom who I have dubbed "sparkly-zen-grandma" because she can calm even the most cranky Gracie. I am not sure who was more excited......this mommy may have had a hay day! Buckle your seat belts: blatant spoiling ahead! ![]() The birthday fairy came :) It gets worse, just wait- hee! ![]() Princess much? Birthday photo shoot- ooh la la! ![]() Can you glimpse those teeth?? ![]() No, I couldn't help myself.... ![]() Special present from Grandma! She couldn't help herself either! ![]() ![]() Happy Birthday!! She licked some frosting, but I helped her eat the cupcake....don't judge. ![]() Her fancy new ride! ![]() Honestly, we are still recovering- ha! I cannot express how grateful we feel to have such a fun time with Gracie. A year ago at this time, I was high on Percoset, post C-Section with a baby who occasionally turned blue. We spent 5 weeks in the PICU. Let me tell you, this weekend was WAY more fun. Hope you all had a good one too! Lots of love! Greeting everyone! Each little new found freedom combined with the beautiful weather is really hindering my blogging time, so this is a little late but I wanted to share the results of our final diagnostic test (and when I say "final" I mean for the next 6 months at least). Gracie had a Modified Barium Swallow Study (MBS) on February 16th at a branch of PCH. Once again, they did not disappoint what with no waiting time, attention to Gracie's comfort and overall competence. AWESOME. In the grand scheme of what we have been through, this test is no big deal (and it's our third one so we know the drill). Gracie sits in a little seat while I don a lead vest and feed her various things while we watch the x-ray-like video of her swallow. It's actually pretty cool. The speech therapist was great- handing me her bottle with the barium/milk, followed by a marshmallow-like substance that actually smelled pretty good, followed by a barium cookie. Bleh. But Gracie tried each item, which is truly shocking. So the amazing news is that she no longer bunches her tongue at the back of her throat, which allows for a functional swallow. She did very well with thin liquid and puree, but still struggles with solids (ie the cookie). She holds the food in her mouth for a long time and then it sits at the back of her throat, indicating a weak swallow and putting her at risk for aspiration. But she didn't aspirate. She never has, and this is HUGE! This is what truly keeps her off of a feeding tube. So now that we have further confirmation that she is a safe oral eater and no further MBS tests are recommended, we can proceed very specifically with her feeding therapies. We have been practicing for quite some time with straws, open and sippy cups. Thanks to some Elmo take-and-toss cups, we have gotten her to understand straw drinking. She is even starting to hold her own cup! Although she has been physically capable of holding her own bottle/cup for a while, the coordination and effort of swallowing is so tricky for her that we usually hold her bottle while she drinks. But I digress... the straw is going to be our new best friend. It helps to develop stronger oral-motor skills, thereby helping her to swallow. So we will be trying some puree/water mixtures of different consistencies and take it from there. She does still have some texture sensitivities, so we practice things like finger painting (which made her gag) and putting her hands and feet in bins of rice, etc. So her final diagnosis re: feeding is dysphagia which is a fancy way of saying "weak swallow". Weak but functional. We can work with that! We have also cut her Prevacid dosage in half and her bottles consist of a breast milk/Elecare/Duocal cocktail. She lost a few ounces after her airway scope, but has shot back up to over 16 pounds. My personal goal for her (which I truly have very little control over) would be 17lbs by her first birthday...which is SOON!!
ps- we had our first dining-in experience at Chick-fil-A yesterday! I'm not gonna lie, my palms were sweating and I am pretty sure I gave a dirty look to an innocent child who happened to cough, but Gracie was in heaven watching the kids and people. I kept her in her stroller or held her and doused us both in hand sanitizer, but I have to say, it really was a good first experience. Gracie has never been into a restaurant, grocery store- nada. So this was a big step! Thank you to Steffanie, Cal and Jake Murphy for holding my hand though it and making our day so much fun! ![]() Helping Daddy with yard work ;) ![]() I swing my beat at the Playground, you know? How could I have overlooked mentioning such a momentous event?? Gracie stood up by herself the other night! First she stood, balancing on her own. Then she actually stood up on her own! It's still a work in progress, but so fun!! She also grew a whole inch in the last two weeks or so and is closing in on 16lbs. Go Gracie!!
![]() Hello all! Well, I have really been slacking on my blog updates because we have been out HAVING FUN!!!!!!!!! How about that?? True to form, Gracie has started to eat more again. Apparently this is her pattern: a few slow days and then- wham!- she decides it's time to chow down again. And by chow down I mean 24-26 oz/day plus some food... I'll take it! We are trying to wait a full 3 hours between feedings (unlike the beginning of a wean when you offer/make food available all the time) and Gracie seems to be very ready for this. Thank you, Ramsey, for pointing this out to a weary, bleary wife ;) So she has gained a few ounces and is a happy camper.
So with all of our newly acquired "spare time" we have headed out to the playground, duck pond, grandma's house and generally had a lovely time. One of Gracie's latest adventures was to accompany mommy to get an oil change- oooohhhhh!!!!!!! Hey, it was very exciting! We stopped at Starbucks and everything! ;) So here's the doctor-ish part- we have two scopes coming up on January 31st. Our new ENT and new GI docs are going to work together at Phoenix Children's Hospital to scope her airway and esophagus. Although Gracie does have to go under anesthesia, I am told that this is a quick and easy out-patient procedure. So naturally, I am completely freaking out- ha! I am dreading it, but I know that it is the only way to asses her airway growth and to examine her esophagus for signs of esophagitis or anything else that may hinder her eating. So hopefully we will get some answers as far as a trach time-line, reflux status, and growth and development. Or they may not find anything super exciting and things could be status quo for a while longer. We just won't know until they have a look. But I feel very excited about our new team and even more excited for this procedure to be over. So please send out lots of love and prayers to Gracie Jane on the 31st!! Ramsey and I will take some too ;) We feel SO GRATEFUL for how well Gracie is doing, how far we have come and how much love we have in our lives from family and friends. I just keep looking at pictures from a few months ago and shake my head because G was hooked up to tubes and monitors at all times, and now we play with her little friends at the park! We are so blessed :) ![]() Hello everyone! Gracie wanted me to tell you that things got better :) Gracie's GI doc switched her fortification to Elecare (hypoallergenic formula) and she has handled that well. She even gained a few ounces- yay!! ![]() Gracie also wanted me to tell you that she had a really great first Christmas! Her Grandma Deb, Scout, Ranger, Uncle Blake and Jill all came to visit :) She even saw Grandpa Gerard and Grandma Mary in December- wahoo! We played and went for walks. Gracie liked showing off for everyone and drank lots of milk from her bottle. ![]() Santa brought Gracie some new books- one is a peek-a-boo Elmo book which is a favorite :) We even took Gracie for a drive to see some Christmas lights. She was so impressed by the experience that she fell asleep! Ha! ![]() Hi Ho Sliver!!! We are galloping into the new year with some new "friends" for Gracie including a new GI doc and exploring some second opinions from ENT's and pediatricians. Gracie's New Year's resolutions include turning one, gaining weight (ha!), cutting some long-awaited teeth, and continuing to try to catch Trax the cat. Gracie wanted to thank everyone for sending her Mommy and Daddy so much love and support when they felt frustrated. We are still on this journey, but here's to enjoying the ride :) _ Oh boy, I am ready for a Christmas miracle! I am pretty well spent here, mentally and emotionally. We just got back from a follow-up with the pediatrician and she expressed great concern over the fact that Gracie has only gained about 12 oz in the last three months (most of which was between Thanksgiving weekend and now). Ramsey and I went prepared with alternative growth charts, videos of Gracie eating (done eating) and playing, a typed up chart with her "stats" etc. She acknowledged that Gracie is currently spot-on developmentally, but she is worried about her long-term development as a result of this lack of weight gain. She doesn't even care so much that she is on the growth chart necessarily, but that she gains weight steadily. As I said, Gracie did gain 10 oz recently making her about 15lbs, but has plateaued again and the doctor made a comparison to her adopted son from a Chinese orphanage who was malnourished and now is a bit "slow" with some learning. Ummm, not an accurate comparison!! But she scared me to death... (I DID ask her-" what about the developmental skill of EATING??" to which she had no answer...)
We desperately want Gracie to gain weight, but I just do not believe in my heart that a feeding tube is the answer as her weight plateau began while she was still being tube fed. I broke down in tears in the office which is when the doc really started listening. After hearing more about Gracie's feeding patterns, she started to suspect delayed gastric emptying. Maybe this is the key? Gracie is physically capable of drinking a 7oz bottle, she just doesn't do it consistently. So I made a bunch of appointments today- one with a new GI specialist with Phoenix Children's Hospital as well as an appointment with a naturopathic pediatrician so we can explore this further. At first our pediatrician said that if it were her child, she would put the tube back in, but by the end of the appointment she thought that we should wait a few weeks to see if Gracie gains weight. Hmmm... I have noticed an increased interest in solid foods since she started taking an iron supplement, but she still only eats 1-2 TBSP of food/day and drinks an average of 23oz/day. I feel like we are waiting around for these numbers to magically increase, but none of the docs actually know how to facilitate this! And if that tube goes back in, she will stop eating with her mouth. The only thing keeping me from a complete meltdown is the fact that she has gained at least a little weight, but more importantly, has not lost weight. And the bottom line is, we have exhausted our pediatrician's knowledge on this topic. Our previous GI doc moved out of town, so it is the perfect opportunity for a second opinion. So, Dear Santa- all I want for Christmas if for Gracie to be happy and healthy. _Hey there- well, it's a bit of a "down day" around here. I just posted the message below on the discussion board on my parents-of-tube-fed-kids chat room. I think it sums things up:
"Hey everyone! Well, I am thrilled to tell you that since I began this discussion on 11/25, Gracie has gained 10 oz!! Tube free!!! Thanks to a faster flow nipple and a little Duocal, we are getting there! So that's the great news, but I am STILL coming up against opposition- this time from our paed :( I just got back from our nine month check up today. I was SO excited to share our victorious news. Our paed, who has been so great and supportive in the past, saw only the fact that Gracie's weight is still off the CDC growth chart (down 5%). However, her height is in the 25-25% and her head circumference is 50-75%. Developmentally, she is spot on (as per our OT). My spirit was just so dashed. She did have some helpful suggestions such as some yummy, high calorie smoothie recipes. So I do appreciate that, but I guess I should have been more prepared with a copy of the WHO growth charts (which she is ON!), videos of Gracie playing and happily eating, and a good bottle of wine for the doc! You all told me so! ;) Oy. I guess I just thought my main battle would be with the GI, so this was a bit unanticipated. Markus, are you shaking your head? ;) They did check her hemoglobin and her iron is a little low. Yikers. So we are getting some vitamin/iron drops and I am considering starting to introduce some formula as Gracie is still on breast milk. I just read that low iron can = poor appetite, especially with solids. Do you guys know anything about this? Her weight had plateaued at 6 months and I now wonder if this may have been suppressing her appetite? Also, Gracie had started to take more volume but then recently has not been as interested in her bottle. We noticed that she was rubbing and holding her right ear, but the doc says there is no infection. Maybe teething? We are just so worried that this will set us back. In my mind, the feeding tube is off the table as an option any longer. But the doctors feel differently. Am I being too wildly optimistic? Or is it just time for a whole new medical team? Which I admit, is overwhelming to me. Thanks for listening! Any comments would be appreciated :)" |
AuthorLauren, a Yoga Teacher, Choreographer, Director.....and new Mom!! I hope to add "tube slayer" to my list of credits. Archives
February 2014
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