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August 29 51,000 HitsHOLY SMOKES BATMAN! (or I should say Holy Smokes Stacy, MO, Natalie V and M, Amy, Suzi, and Dad) for those are the ones who hit multiple times a day and are responsible for my insane number of hits! Funny story--early in the hospital days, the Crowe family came over to share a quick dinner with us and Stacy says to Jeff (or at least thought it), "we've got to hurry and get home to check the blog". Yep, she was having dinner WITH us and was worried she'd miss something--- she-- who often updated for us, talked to me at least three times a day, and was more in the know than me for the first 6 hours---was that addicted, WEIRDO! I love her for it though. I have to say, I am humbled by those numbers (however skewed they are by the likes of Stacy!). The power my girl has created truly brings me to my knees. An old friend called today to check in; she had lost the blog address before AJ was born and wanted to know how it all turned out. After the conversation, all I could think about was all my new friends who have Angels that have had to endure such inquiries without the same miraculous answer that I have. SO sad. It also brought back how far we've come in our journey, how do you sum it up in a quick conversation? Me especially, quick summary is not my strength! She mentioned that she's not blog savvy and so I had to gush about the power it brought us through all of you. Once again, thank you from the depth of my being. I know your power helped save my baby's life. She's having a GREAT week by the way! I'll share more later as I'm just too tired to update more. I'll just say, you'd never know that she was in the hospital this time last week. The boys are good, I have lots of stories from both. We started to prep Ethan tonight for his surgery on Friday. He's stoked for popsicles and movies but not for the surgery part. If I don't find time before then, please think about him on Friday as well as Miss Allison who is having her repeat bronchoscope (sp?) on Thursday. Happy Birthday Papa Roger and the Twins (friends from highschool who are celebrating together for the first time in years as Cathy just moved back to WI!!) Talk soon, Jenn Our Deepest Sympathies to the Olson FamilyDear Joseph,
Your mommy's love for you touched us all so deeply that we couldn't help but fall in love with you too. Rest peacefully sweet boy.
Love,
The Millers August 25 Allison heads home!I shouldn't write this before they are actually in the car, but the paperwork was being done when I last spoke with Stacy. This entry better not jinx her discharge or I'm in BIG trouble!! Mega-baby has made an outstanding recovery, yay for Allison and the whole Crowe/Hawkins clan!
It was nice to have such good news today when my head and heart have been so focused on Baby Joseph's arrival. I so hope the Olson family is finding some peace today on what I'm sure is the most difficult one of their lives.
Audrey is recovering well. So far today she's even been having a banner eating day. She still has a few symptoms (rash and diahrrea), but definately on the mend. I'm so baffled by what she got and where as NO ONE I know has any symptoms. It has really stuck it to me just how scarey this winter could be for us with not only her respiratory status so compromised but also her GI system. We'll just have to do our best; the boys are really working hard on remembering to wash their hands often. The evidence is in how scary their bathroom looks--soap and water splatters EVERYWHERE--please be forgiving if you ever visit and have to witness the horror that is their sink--it has a good excuse! We've also installed a Purell dispenser at Jason-height for the garage entrance; the 100 degree weather however has made using it quite comical--Jason has a hard enough time with Purell when it's gel-like, you should see him with hot, liquid-consistency--not much stays on his hands!
UPDATE!!!! Stacy just called, they are almost home!! WOO HOO!
Gotta run, lots to do.
Talk soon,
J August 23 We're Home!From where you ask? The hospital.
Yep, that's what I said, the hospital, UGH! Audrey was in since Monday night for bowel distention and dehydration. She woke up Monday vomitting green bile and after a trip to the doc and hospital for an x-ray she still ended up back Monday night (a HUGE thanks to Jen B for her help in the ER) and got admitted until this afternoon when her x-ray finally showed improvement and she started eating again. I'm still in a tizzy over how this happened in the midst of all that's going on with Allison (is my daughter some crazed attention seeker already??!). Speaking of, Allie is doing great, extubated and back in a regular room. She's having some swallowing issues (she aspirating some) but should still get to go home by Friday or earlier. It's been quite a journey for the Crowes and they have a road ahead of them until she's totally as good as new, but Allison is doing great and I couldn't be more grateful.
I'll write more later if I have time, it's a bit crazy around here and Audrey is no where near 100% yet. I just wanted to update to fill you in on AJ, Allison, and to remind everyone to keep Carole and her family in their thoughts.
Later friends,
Jenn August 20 Allison LinkFor those of you who haven't seen the Crowe's site before. http://jgcrowe.spaces.live.com/
I saw Allie yesterday. She looks good, as good as kiddo can on a vent I guess. Please keep the thoughts coming!
Love,
Jenn August 18 All is well!Allie is out of surgery and on her way to recover in the PICU. Everything went exactly as it was suppossed to! She could be extubated as soon as Tuesday and home by Friday! I'm hoping they are being conserative with the timeline and everything will go much faster. I was all cool cat asking a million questions and then Stacy said something about how much better she feels and I replied something like yeah, like a huge weight is off you or something, I just can't even relate. Pause, then I realized what I said and then it all came flooding back to me (I can relate) and I was right there in the moment that Dr. N came out and told us it went well. Poor Stace, exactly what you don't need when you're emotionally spent is your best friend hysterically crying on the phone, oops. I suck at being the supportive friend. We got off the phone pretty quick then so she could hold it together. I'll update again if there's more news. For now, WOO HOO!
Jenn
PS A good thing about having 3 kids is you can't spend too much time on any thing---my tears were quickly squelched when
1. I needed to pull it together in front of them, and 2. Ethan says, mom, need my cheesey smile to make you happy? After explaining how sometimes you cry because you are happy and having this great sweet moment with E, they are now on my last nerve as I'm trying to get this post out; time is definately a hot commodity! Just WaitingAllie isn't even in surgery yet but both my kiddos are asleep so I thought I take the time to ditch housework and just post to pass the time. Nate always says I take SO long to write a post that perhaps it will get me through the waiting a bit more easily!
I have ten thousand other things to do, thank-yous especially. I tend to write those better at night though; I appreciate everyone's kindness in giving me some slack in the etiquette department--please know how grateful I am for the amazing gifts we've been given and look for a card soon. I LOVE all of the gifts, who knew such sweet girly things exisited?! My most recent favorite is a blanket from my Aunt Helen that in addition to being personalized also has a cute corner with the saying "sweet baby", which if you've seen AJ photograph slideshow from Sugar, you know is now a near and dear phrase to me!
Another note about the Sugar photographs, Lauren wrote a bit about them last week and how she coined what one of photos speaks to is just another example of the wise soul that Lauren is. I see all her crazy, fun, and young times documented in her blog but she really is an old soul who gets to live in a cute, young body and have way more fun than I remember at that age!!! What a gift Avery was given to have Lauren as her mommy.
Ethan's first week has gone really well; school definately suits him. He's way too cool for me too, yesterday when discussing his impending first trip to the cafeteria he says, "mom, don't talk to the teacher about me using the cafeteria today, I can do it". Oh sorry big guy! He has somehow, somewhere picked up a new, ever-so-sweet battle cry response to everyone in the house (except Audrey and Phoebe so far) when we do something he disagrees with---"I hate you, I don't even want to have a (mom, dad, brother)" NICE, huh? I feel as if we've marked another milestone off the list of growing up, I would have been fine with skipping it though. His attitude apparently is only saved for us though as his teacher says he's great. He does sneak some sweet in at home sometimes too, it just hasn't been as consistent as it used to! His surgery is scheduled for Sept 1rst, hopefully with better health, he'll be happier too.
Jason, my little riot and sweetheart. Check out Nate's blog for some comic relief from Jason. Nathan posted of video of goofball begging for beer. Please don't call CPS, he's never had any, he just wants too! It's been nice spending time with just him while E's at school and AJ's napping. He's a busy kid but such a sweetie (except when he pulled out Audrey's NG tube last week, UGH!) He's made up for it this week though with a new habit---whenever they are in the car together, he holds her hand! It's the cutest thing. He doesn't tell you about it either which makes it that much sweeter. It's tough caring for two so young especially since one has special needs, but I'm so excited to watch their relationship unfold and grow.
Finally, Miss Superstar herself...she's as pretty and special as ever. Her hair is starting to fall out so I'm a bit anxious to see how long she'll be bald and what color it will come back. She's working on holding her head up, tolerating tummy-time much more, and teetering on a laugh. All normal baby stuff, a bit late, but normal nonetheless! The other night she pulled her tube out around midnight and was SO inconsolable that we decided to let her just go without. When she woke up at 4:30 starving, we had the most incredible moments--she was just SO "normal"--I fed her, changed her and then shared some sweet sleepy smiles before swaddling her back up and putting her down. It was first time I've ever felt like things were normal--it reminded me of the many nights of Ethan's and Jason's infancies. I cried when I put her down mostly because I was so touched by the intimancy of the moment but also because I knew these "normal" moments are so few and far between. Yes, she does lots of "normal" things but nearly every aspect of her day is coupled with thoughts in the back of my head about: her developmental progess, her weight, why is she in pain, why is her profusion so bad right now, is that a wheeze or just congestion, should I gavage her more or let her go, did I give her that gavage too fast, is that more or less blood than the last stool, does she need the xopenex today or is flovent enough, why is she so tired today--is she growing or is she fatigued from all the work her body must do to heal and eat not to mention the excercises we must do to combat her delays, did I push enough or too much on that bottle attempt;
I won't go on anymore (sorry!), I think you get the picture. I know this is self-inflicted and I should probably let it go, but how do you do that? I just don't know. I clearly remember the questions and insecurities of being a rookie mom when Ethan was little and the frustrations of the unknown when Jason had blood in his stool and brochiolitis, but man, this is all that multiplied a 1000 times. I feel like I'm juggling 10 different balls and deciding which ones to let fall nets me guilt and anguish over the ramifications of what I let go. I'm doing the best I can, no one seems to expect more but me.
Her GI visit went well, she gets another 2 weeks to figure it out and we'll reassess again. We love her pulmonologist even though he confirmed that AJ has chronic lung disease from all the ventilation she endured (it's a hard diagnosis to face for your 3 month old). He gave us hope though that if she can stay healthy this winter that she has a chance to repair and grow enough to have near normal lungs despite their smaller size. The pressure of keeping her healthy is going to be tough though with 2 kiddos in school; we'll do our best. Both docs seem to think she'll benefit from intensive feeding therapy so I'm waiting for that return phone call. She has developed pretty severe aversion to both the bottle and the paci; that she still breast feeds is the hope we're hanging on to (that she'll come around to taking more than 50% of her feeds orally). We'll see. She looks amazing, plump even if I do say so myself!
It's nearly 2 now (I've been pulled away several times while writing) and still no word from the Crowes. I'll post when I hear. Keep those Allie thoughts going!
Love,
Jenn
August 17 Rally the troops!Allie will be having surgery Friday at 1 pm. This is not a routine or simple removal by any stretch and we need to send her and her surgeon lots of positive thoughts tomorrow. I want this little girl to not only soar out of surgery but have the easiest, most remarkable recovery ever. I'll be fine if she just recovers in her own time, but let's shoot for the moon, huh?! I just got off the phone with Jeff after a stressful evening of waiting for Allie to come out of her MRI and then recovery. Stace called me in tears during hour 2 of waiting. No one was updating them why it was taking so long and it then took another hour for them to find out what the problem was--Allie is fine, but had some breathing issues from sedation during the procedure which caused the delay and then came out of it with low body temp and heart rate. Like I said, all is fine, but it was a long night. I went by the Crowes tonight to briefly play with Jackson and drop off Audrey's famous lamb for Allison to have tomorrow. I'm hoping it will bring the same strength and comfort it brought to us (see pic attached to remind you). Jackson was a nut, we had fun jumping on the bed and getting ready for bed; I just love that kid! He's being cared for by Stacy's parents and is getting a nightly playdate with his cousins so he's living well. How blessed the Crowes are with their family.
I'm going to close with a promise to update tomorrow when I hear all is well and to find time this weekend to share E's first week (great!), AJ's appts and our special moment last night as well as my new time spent with just Jason--he's such a riot! And finally, I'm going to be greedy and ask for you to also send some love and peace to Carole. I found myself drowning in tears today after reading her post.
Love,
Jenn August 14 Seriously?I'm really at a loss. Allison is now in the PICU at Children's Dallas. She has a Subglottic Hemangioma Here's a link to do a quick overview http://www.emedicine.com/ent/topic324.htm#section~subglottic_hemangioma
Basically, she has a benign mass that is blocking 90% of her airway. Seriously? HOW IS THIS HAPPENING? This sucks on so many levels but more than anything, I HATE thinking of Allie girl laying in that bed miserable. Stace said she's hardly sleeping and if she does it's only in short spurts, poor pumpkin. Of course that means Stacy hasn't really slept in a few days either. Please put them in your thoughts as they face making treatment decisions and the nightmare of PICU life. I wouldn't wish one minute of what we went through on my worst enemy and here my best friend is having to endure it, UGH is all I'm sayin.
Ethan's first official day is tomorrow. He's WAY excited. Today went well; he's just ready to go now--there have been 3 separate events already where he's gone to the school but hasn't been left there yet! I'm sure I'll be a mess when I do actually leave him, I just can't believe he's really a kindergartener.
Audrey has a big GI appt tomorrow; we're having the G-tube discussion. She hasn't been eating orally very well at all but she is gaining. I still haven't shared her Pulmonologist or Developmental Ped appts--let's just say we have A LOT a variables to consider. I'll try to get it all out someday but for now I'm heading to bed; we've got a big day here tomorrow! Again, please say a prayer for Audrey's best buddy Allison and her family. Remember our CDH families too---Baby Jax had surgery today and I haven't heard how he's doing.
Jenn August 13 Allison, Get Better!!Allie was admitted to Children's last night as her airway was threatening to close. With breathing treatments and other steroids, she is improving. The question now of why needs to be answered though so she will be undergoing an exploratory surgery tomorrow or Tuesday because she's been scoped twice now and nothing can be found other than swelling. This can be done under general anesthesia so she won't need to be intubated. We're hoping the fix will be an easy one. She did need to have an NG tube placed though as her breathing worsens with feeds. I just hate that Allison is having go through all this as well as Stacy and Jeff; Stacy did her time with us and Audrey, she sure didn't need a first-hand experience.
In other fronts, Ethan's first day of Kindergarten is tomorrow. Well, we go with him tomorrow for an hour and then Tuesday is the real first day. I can't even begin to start the flow of emotions over this, let me just say that I really can't believe my baby is a kindergartener, where did the years go?
Gotta run, just wanted to update on Baby Allison and mention E's big day. Our visit with Granny, Aunt Nicole and Caroline was wonderful. Hopefully I'll get to post pictures later. Audrey's been having some great days, being a little stinker about eating, but great nonetheless!
talk soon, J August 12 Thoughts for the Olson FamilyI’m just so sad for Carole and her family. If you haven’t read about Baby Joseph yet, they’ve gotten some terrible news about his prognosis. Please pray for them. I just can’t imagine the pain they are feeling right now. Carole, please know you have an army of support through the network we’ve created. You’re never far from my thoughts. Joey is not only basking in the amazing love of his family but also the power and love of hundreds of strangers.
Love, Jenn Happy Birthday Leah!Leah Mostek, a right-side CDH survivor, turned one yesterday! I just heard from her mommy, they had a great day! I tried all day yesterday to get a post up with her birthday wishes but it just didn't happen, such is life these days. Kristyn, Leah's mommy, has been an amazing wealth of information for me throughout this journey. I just realized recently that I haven't mentioned them before and didn't even have their link up, so now all of that is fixed! Kristyn has been supporting since before AJ arrived, but her input of late has really gone above and beyond--I send her a list of questions (some are even repeats) and every time she replies with detailed info that has been SO helpful both practically (ideas for ways to get AJ to eat etc) but also emotionally (hearing some one else that's gone through the same as us). Thanks Kristyn! Celebrate that baby girl's day all weekend, you all deserve to relish in her miracle! That leads me to mention a few other survivors that I've come to know recently--Gabby, Nanette, and Sarah. All of their sites are up now too. Each has such an amazing story. It's so helpful to know other families that are facing the difficult road of having a CDH kiddo . I’m not sure how, but I’ve never put up Kylie Dudley’s site until now either. Kylie’s parents and nana have been instrumental in keeping me sane throughout all of this. Audrey was even in the same nursery and exact same garden room at PHOD as Kylie was just 2 years ago. They came over this week for a play date; Kylie is an absolute doll—adorable, sweet, just precious! Julie, her mom, always makes me feel better about everything because every random thing I observe in Audrey, Julie says Kylie did too. Something that has really hit home this week is that although beyond blessed to be home so soon we still have A LOT to face. Audrey is doing great, but she's not a normal 3 month old by any stretch and dealing with that reality (and I mean the reality--endless doc appts, endless eating frustration, endless painful crying that rips out your heart, etc) coupled with the emotional end (endless juggling of all of the factors for her recovery over the guilt that you just can't do it all and parent two others), is a struggle to say the least. It's a struggle I'm honored to have though and with the support I'm blessed to have, we're doing it. Thank GOD for the people I've met through this journey as well as the amazing people I already had in my life. Stacy especially; which leads me to my next topic... Audrey's little buddy Allison needs your thoughts----poor pumpkin has such severe reflux that it has swollen her trachea nearly closed. The doc yesterday was shocked that she hasn't had any blue spells or stoppped breathing all together yet, UGH! SO scary. She's improving with meds, thickener, and new bottles; keep her in your thoughts, she sees the doc Monday and if the swelling is decreasing they get to avoid the hospital, otherwise she'll probably be admitted, double UGH! That's it for now. Oops, oh yeah...the pics...I can't even believe the gift we've been given. Jen Weintraub really captured things that I just didn't know we wore on the outside, she is so gifted. And that song?! Just love it, love everything about it. You girls and your hair comments crack me up, thanks. I do feel like I need to clarify though, I haven't mentioned my hair debacle since we did the session and after seeing our souls in those pictures, I just can’t complain about my dreamsicle hair--prior though, I was nervous because I had a coloring nightmare, how it escaped the lens I'm not sure unless Jen did something. If you see me in person, you see it. Anyway, have a great rest of your weekend. Nate’s mom and sister are coming today. Penny is doing surprisingly well considering her condition; she did have to have her latest round of radiation stopped early due to severe burning, but her doc’s most recent quote was something like, “you are the unsinkable Molly Brown!” We’re so thankful she’s feeling up for the drive to visit.
Talk soon,
August 10 SpeechlessAugust 05 Happy Three Months Sweet Girl!Three months?! It's been a flicker and a lifetime all at once. May 4th seems like SO long ago and she's come SO far since then, but at the same time, I can't believe her first year is already a quarter over, crazy!
Amazing Audrey. That's what Jen Weintraub coined her one day and that has been my name for her in my head ever since. She really is just that, amazing. I'm just starting to get my head around it. A while before we left the NICU, but once it was clear that we were going to, one of the nurses said something to me that will always stick with me..."Jenn, the term 'miracle baby' is one that is thrown around this place a lot; but Audrey truly is a miracle, all of us feel that way. Babies as sick as she was just don't make it" I haven't shared that before just because I know that every baby is a miracle all on there own and I didn't want anyone to be offended or anything; but tonight I just feel real thankful that I have my miracle and she's 3 months old! It leads me to to a post that I wrote out longhand in Audrey's journal; I didn't date it but I'm sure it was from mid June...
What is the difference?
We've asked ourselves this question a few times recently as have so many of the health professionals who see Audrey--"What has made her recovery so phenomenal?--was her defect special/less severe? was it her care? was it the thousands (literally) of thoughts and prayers dedicated to her? was it some divine intervention? was it her will?"
I've finally found the answer....
It doesn't matter. She's here and she's as perfect as she can be right now. I'm forever grateful for all of the variables that came together to get her this way. I'm thankful for the life we have and the opportunity we've been given. I so wish all CDH families could have the same.
August 03 Ugh, Part Deux!Before I spew the negativity, let me start with the best phone call...today has been a day (to say the least) but around 5 this afternoon when I was nearing the end of my rope and realizing that all we had as a dinner plan was chicken with something my phone rang and it was Marcelle saying she was making us dinner and to expect her in an hour. How awesome is that? I didn't even know Marcelle before all of this(she's a friend of a friend) but here she is saving my night and reminding me of just how blessed I am, thank you Marcelle! Dinner was delish and the cookies may all be gone before morning--feed a cold, right?!!
Now, here we go...my misery has forced me to take OTC drugs, none of which are harmful to Audrey but they all could weaken your milk supply--apparently they do; poor AJ got so frustrated today having switch sides and still not getting full. It's ironic really because she used to only feed from one side and never empty it and I've been trying to "train" my body to deal with that, UGH! I'm going to try to go without meds but oh man, even my teeth hurt from the congestion. Just can't win. Audrey still sounds good though, so I'm hoping all the hand washing/sanitizing is working.
Now for the super UGH--Ethan has to have surgery to remove his adnoids. It's outpatient and should be no big deal, but I just hate the thought of it. We're probably going to wait until late August to do it. He has chronic sinus infections and had a CT scan in May (right before AJ was born) that showed how huge his adnoids were; we went back to the allergist today and he was horrified by how bad his sinuses looked, sent us to the ENT who scoped his nose and said his adnoids blocked a little more than 75% of his nasal passage and were covered in nasty pus, UGH! I wish had the energy to share the ENT visit with y'all as it really would have made a great sitcom episode, let me just say there is not another 2 year old like Jason on the planet--everyone is always nice to share their 2-year-old horror stories, but my kid takes the cake, I'm completely confident--him coupled with Audrey crying and Ethan trying to figure out how the cool chair works made the doc pat me on the way out saying, "good luck, I don't know how you do it" UGH! I don't know either! BTW, Dorcas, thanks for the kind comment yesterday, I don't feel so amazing lately so it was particularly nice to read. I'm hoping we'll be well enough to see you on Saturday.
I'm going to end now but wanted to quickly mention a new CDH baby--Maria is just 7 days old but already had her repair and is extubated! She is at CHOPS; her mom, Gina has been in touch with me for some time. I'm SO excited for them. Gina wrote me after we got home asking for any hindsight advice for the hospital--it was such a hard email to write (didn't want to scare her but wanted her to be ready for some of the things I wasn't) and it turns out she hardly needed any of it since little Maria has done SO well, I just couldn't be happier! Please keep them in your thoughts, Maria--keep hanging tough!!
I'm going to get to everything else soon, I just know it! Thanks again Marcelle for making my night!
Love,
Jenn August 02 UGH!We're sick (Natalie M, I'm sure it's your fault
 !!) Nathan and I both have the worst sinus infections ever; seriously, I used to get them chronically and haven't had one this bad since I taught (6 years ago); Ethan has asthma induced pneumonia to go with his sinus infection but THANK GOD Jason and even more thanks, Audrey, are fine. I took all three to the pediatrician this morning though as I was a little freaked when the stuff I suctioned out of AJ's nose was green. Taking all three is a whole other blog but the results were worth it--Audrey's lungs sound perfect (for her--she was sating 91 though which still bugs me that that's ok for her) and Ethan got a Z-pack and is seeing his allergist in the am. I wouldn't be posting except I need y'all's positive thoughts for Audrey to escape this without incident and I can't sleep anyway with the ridiculous amount of congestion I have! I am, however, going to try (to sleep). I've made a list of all the blog topics I have floating around my head, hopefully I will get to them soon; so much to share! Until then, please think healthy thoughts for us and all the other CDH families--compromised lungs are sure a scary thing to have in your house!
love,
jenn
Future topics:
Balancing Act
Two compliments
Ethan--why does Audrey get to do whatecver she wants?
M, Gabby, Leah, and Rachel
what's the difference?
Developmental Ped and ECI visits |
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