jennifer's profileMiller Family BlogPhotosBlogListsMore  |  Tools Help |
|
January 27 We meet!I could go on and on about tonight's gathering but I really just have time to say it was GREAT and to upload some pics. I am hoping to get more pics from the other moms too (hint, hint!!) I do want to say thanks to Marcelle and her family for hosting a FABULOUS party; they are amazing hosts!
I feel like I've been to a family reunion except there weren't any crazy uncles or creepy 3rd cousins (not that I have any of those
 ) , just amazing people with whom you feel a soulful connection to and can talk to like you see them everyday!Talk soon,
Jenn January 25 You will have visitors from afar...I swear if I had seen a psychic recently like Lauren did, that would have been my fortune. In addition to the planned visits of Jessica and Lauren, my dear Aunt Darcy and a friend from highschool called to say they were going to be in town! I should see both of them tomorrow and then we have our get together Saturday with the CDH gang. It's turning out to be quite a gathering, I can't wait! Today we had the pleasure of sharing the Miller Circus with Jessica and Ashley Singletary as well as dear Marcelle and her daughter (whom Jason loved!). What an amazing couple--sweet, loving, and genuine. I couldn't get over the familiarity and closeness I felt to them; I guess our shared experience really has bonded us. Audrey was completely charming too, flashing them instant smiles and letting Jes hold her without any complaint. She did also introduce them to projectile vomit, but she didn't get any on them thank goodness! Speaking of what comes out of the mouths of babes...Ethan ended our visit with a quote that went something like (I can't remember it exactly as I was so red in the face from it) "mommy, we can have another baby, you do have 2 breasts so you could feed them both". Yep, thanks for sharing kid! We were talking about family size and I asked him how many kids he thought we should have (4) and then if we were going have that many (NO)! It was great to meet them and I am so excited to see everyone else on Saturday! We are feeling better, still not perfect, but better. I took AJ to her ped again today though (so she could check her granulation tissue around her button as it's gotten bad again) and she said she felt good about how she's weathered this cold and most importantly that she's not contagious anymore despite her ugly cough. Of course there could still be a trace of virus lingering in her mucus so we won't be sharing toys or anything, but she's cleared to visit without being a threat to the precious kiddos that will be there on Saturday. I didn't realize the emotions our gathering would elicit from me but I've really found myself reflecting on our year lately. I spent some time looking back at pictures from May and June as well as reading some of the posts from then. WOW is about all I can muster. The losses I've witnessed the other parents endure is weighing on me too. SO many, it's just not right. Dear Parker, I missed you today especially; your parents must be making you so proud, they are special people. I will try to write this weekend after the big event; thanks to Marcelle for hosting, what a gift she's been to us! Love, Jenn January 21 Sorry it's been so long!Not sure how it's been so long since I posted (well, I do, it's called our life!) but I normally make the time in order to regain some sanity and I just haven't been able to do that lately ~so you can imagine just how crazy I am by now! I apologize for any worry my absence caused. I have been checking comments though and really appreciate them. Aunt Lynne, yours espeicially was nice. I think of Grandma often and am proud that Audrey shares her middle name (that's where Jane comes from for those of you who don't know; my paternal Grandma was EJ for Eleanor Jane but went by Jane quite often too).
One of the boys brought home some nasty cold that all of us except Nate has gotten. I thought I was going to die on Wednesday (which just happened to coincide with the snow that kept both boys home too, ugh!), but am feeling better, however still coughing and such. Audrey is doing okay with it but is back on breathing treatments every 4 hours, lots of suctioning, and tylenol with decongestant. She's doing well keeping her sats up though so we're hopeful she'll get through it like a champ. I'm SO hoping we both do as next weekend we will get the opportunity to meet several of the amazing people we've come to know through CDH as well as catch up with some we haven't seen in awhile. I'm SO looking forward to this, please send us some healthy thoughts!! On a side note, who is the worst friend ever? ME! Yes, I took this nasty cold to the Crowes last weekend--Jason had just started it Saturday and I wasn't convinced yet whether it was just his regular allergy congestion or somthing new and so we had dinner with them and now they have it too. NICE.
I have lots of fun Ethan stories to share as well as Audrey's eating trials--she still is experimenting but she's going to be tube-fed for a long time I think. I hope I can find more time and energy this week to do it, Audrey's waking up right now so I've got to run. Take care everyone!
Love,
Jenn
January 09 Happy Anniversary to Me!Yesterday marked my Blogging 1 year anniversary; man what a different world I live in today. What I mean is man, how different the world is to me now--now that I've heard a doctor tell me my baby may not make it through it the night, now that I've witnessed pregnancies, births, and deaths of other CDH babies, and more than anything, now that I know my dear sweet girl. I do wish I could say that I live everyday to the fullest and appreciate my kids every second, but it's just not reality; I do love them deeper though and try a lot harder. My eyes definately see differently after this year and my heart has been both filled and crushed by the ever growing circle of CDH kiddos I've "met" while their families have given me a new respect for love, courage, and grace.
First and foremost on my mind tonight is Stace...last year at this time her life was a whole lot easier; today her daughter was released from yet another hospital stay and she had to take Jackson to his first therapy session. Yes, sweet Allie girl needed to be lasered again as the hemangioma grew again to block 80ish% of her airway. My heart just hurts to hear the exhaustion and sadness in Stacy's voice. Allison did great but still needs to heal/not get sick/make it through a round of steriods/etc etc, not to mention just get over yet another sedation and bronch which she'll have to do again in another 6 weeks if not sooner (if symptoms start appearing). Some people go through their kids whole life never having to hand them over to an anesthesiologist, we've handed our girls over more than 10 between us and our boys (except Jason) 1 each in just one year, ugh!
All of this coupled with getting everything coordinated for Jackson, not even mentioning the emotional toll---Hang on my friend, we'll get through it.
Audrey is trying her best to be easy lately! She continues to be a superstar...even, dare I write it...
EATING! We had her THIRD swallow study on Friday and the therapist told me to be aggressive with tastes, textures, and cold things-- that maybe that will make a difference. Sugar cookies, whip cream, premium yogurt, & straight prune juice later and I see real hope for her becoming an oral eater! She definately still has an aversion to the spoon (prefers to eat from my finger) and doesn't have good tongue/swallowing coordination, but she is really trying and we haven't puked, coughed, or cried once! She has taken food before but never more than a 3 - 4 micro bites; today she ate 1/4 of a yogurt container, 1/2 cookie, and several bites of mac-n-cheese. Drinking is a whole other matter, but she's attempting the sippy cup with much more success than before too. She's still getting approximately 1/2 of her intake by tube (still breastfeeding the rest), but who knows what she's capable of! She's gained 1 lb this month (between Synagis Shots) which brings her up to 15 pounds! I so wanted to tell Penny that yesterday, she would have been so excited!
A quick run down on all the doc visits between last Tuesday and today:
Immunologist: 21 day course of antibiotics to try and get rid of lingering sinus infection (she had already started per our superstar pediatrician, so she only has 8 days left), labs run (ie 3 vials of blood drawn) but not back yet to check for immune deficiencies
Sleep Study: results not in yet, got an email back today from doc saying he hadn't seen them yet--unless those results net some amazing, life changing data, my vote is DO NOT put your kiddo through such a thing, it SUCKED
Swallow Study: not a great study (AGAIN) because she doesn't take much from a cup, bottle, medicine cup, dixie cup, sippy cup, syringe (get the picture--we've tried EVERYTHING!) but the 5 - 8 swallows we did get showed that she does protect airway; however it shows nothing for stamina, endurance, or what happens at the end of a feed, etc so it's not really conclusive. It does indicate though that she must have pretty severe reflux to have such an aversion to eating and therefore we are going back to thickening everything in her tube and cups as well as trying to increase solids (anything to help food stay in her tummy!). We did change the thickener to one with calories that helps with our on going constipation issues. I haven't seen a difference yet, but hopefully will get a good poop cycle again! Sorry for TMI but it really rules her world--lack of poop increases her reflux, which increases her congestion, sometimes her aspiration, wheezing, ear infections, you know the drill.
ENT: ears finally look GREAT!
Ped: our favorite of the bunch (and I'm not just saying that Dr. Sickler because I know you're reading
 !!) gave me the best quote "she sounds the best I've heard her!" LOVE that! Yesterday, however, I had to bring Ethan in and now he's on steriods and antibiotics for sinus infection and wheezing--someday our whole house will be healthy at the same time, I just know it! Jason got his stitches out on Friday and then today fell on the tile but only got a big knot on his head thank goodness. We've also been to therapy twice this week and go twice tomorrow and have one session at the house--nothing to update about those.
Ugh, I'm tired just writing all that; thank goodness the rest of the week is slow! I'm not sharing it for the pity points though, more as a record for me and eventually Audrey, of what her first year was like. I've never read back through much of this blog and quite frankly, I'm not sure the May entries would be that easy to get through, but when I took the time to read Jan 8th, 2006 it really took me back to that time. Despite the arduous nature of this journey, I really don't want to ever forget the details of it. I started this blog last year as a means to keep those who love us informed, what it's turned into--my therapy, outreach, support source, etc--is more than I could have ever imagined. Thank you for continuing to humor me by letting me share it with you.
Please send your thoughts to the Crowes, we need 'em!
Love,
Jenn
January 06 Just super quickHave lots to share but I'm off to bed after a super day--just wanted to post these pics of AJ to show what a little ham bone sweetie she was today. Thanks to Mo and fam for the great evening. Thoughts to Allie Girl for her bronch on Monday and to Jessica and Ashley.
I'll try to post tomorrow with more if I have time.
Love,
J January 01 More singing pleaseKids can take you from pulling your hair out crazy to teared-up nostalgic in less than a minute, it's a remarkable talent they have; I guess it's what keeps the species on the map 'cause if it wasn't for those moments, I'm positive humans would cease to exisit! The boys were beyond hyped up tonight (sweet AJ went to bed peacefully at 7) and I didn't think there was any hope of lights out anytime soon. Nate was off to grab a few needed groceries (poor Phoebe was about to have to have leftovers and scooby snacks for dinner and breakfast if he didn't!) and I was left with crazy boys. I resorted to just reading without anyone in my lap which worked but then they proceded to be the least captivated audience ever, "wait, go back" "where's this, where's that?" "mommy say again"-- a total whippin of a bedtime that I was all ready to write off and head out of quick with minimal snuggles until sweet Jason whispers to me during his quick snuggle, "mommy sing". I kiss E and he goes up to his bed and I sang to my sweet little boy his special song (each kiddo has their own song that was somehow concocted during their infancy to calm them--Ethan's has verses and verses, Jason's has two phrases, poor Audrey's is her name put to Jason's tune, so sad!). When I thought I was done, he snuggles deeper and says, "more singing please" and although I'm probably delusional, I really believed he just wanted the comfort and wasn't trying to stall. Since he rarely lets me do much snuggling, I was happy to oblige and ate up every second of his freshly washed hair and tight little squeeze around my neck. Just love that little nut!
Don't get lulled by the sweetness though, crazy came back quick when I went to put him down and was upruptly reminded of an earlier conversation:
Nate: Jason's diaper leaked and his bed is soaked
Jenn: pull the sheets, clean ones are in the closet
I never followed up on that and of course my response was construed as "I'll change the sheets, don't you worry about it". So, lights are out and I'm stripping and remaking while my sweet Toe-head is chanting "I get new bed, I get new bed" and Ethan keeps repeating his request for redo on his tuck in, "mom, I need you to tuck me in again" because apparently when I say "as soon as I get this bed made and your brother in it" isn't a clear response to him. I thought I was going to lose it but those few minutes of sweetness from Jason were enough to get me through and when I was FINALLY leaving their room, I got unsolicited "I love you"s from both--we'll make it another day!
Happy New Year everyone!
Our big rocking New Year's Eve was spent in the ER getting Jason's head stitched up (although we were home in about 2 hours). His climbing adventures finally got the better of him. He's fine, a little sore, but fine. It was pretty nasty though. Thanks to Sharon for helping out, she's the best--got here super fast and cleaned up the bloody carpet, I just love her! Ethan was a super big brother too--calm, helpful, and sweet.
We decided it was a fitting way to end what has been the hardest year of our life. Hopefully it will be our last emergent hospital visit for a long time (had to qualify with "emergent" as we will be headed to Children's this week for AJ's sleep study!)
We toasted to an easier 2007, please let it be that way! To those of you that I just met in 2006, thanks for becoming a part of our life and letting me into yours, I feel so blessed to know you. To our friends and family who supported us in SO many ways this year, thank you from the depths of my being, we would have NEVER gotten through this year without you.
Happy 2007!
Jenn |
|
|
