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November 30 Jason is the Winner!We concede, he can now officially run the house. Tonight (see couch pic) he just kept saying, "no I not go bed, I sleep on couch" and I was tired enough to almost just let him, cute naked bottom and all. I really wanted to watch Heroes though so I finally corralled him into clothes and bed, man he's everything books about difficult children are written about! Tonight, along with a few other gems he's produced the last few days (think washing machine overflowing, losing Nate's wedding ring, etc) are exactly the stories Nate and I would normally run to call Penny about--she got such a kick out of hearing the crazy Jason stories (she had already lived them all with Nathan as apparently Jason is a carbon copy of his daddy at that age!). Wanting to call her sucks and it keeps happening, I wonder how long until that thought doesn't happen anymore, that we completely get she's gone?. Ugh. It happened today at the Dr. office too, Audrey hasn't gained (or lost, thank goodness) an ounce in almost 2 weeks; my first thought was that I'd have to fudge that for Penny--she always wanted to know Audrey's exact weight, I think she asked me at least once a week. Anyway, not great news but she hasn't lost any, so I'm not too upset and hopefully the new little accessory we'll be getting on Friday will help fatten her up. Yep, G-tube surgery is really still on for Friday. I'm not silly enough to say it's going to happen, but we are all ready for it. She's getting ear tubes too. We're on for 12:15pm. Get the thoughts going for a smooth recovery and that getting that ugly NG tube out will be helpful. I just want this to be "easy" (what surgery is ever easy?) for her, my heart just can't take her in pain much more. Monday and Tuesday this week were real rough, lots of tummy pain, vomiting, low saturations, etc. Today, however, she seemed to have turned a corner and had a great day--ate more than 2oz in a feeding, only broke out in a sweat from pain once, and talked/laughed lots. She's turning into quite the character--Ethan nailed it tonight when she started fussing a little, "she's just getting mad that we're not all looking at her" sure enough, as soon as we turned back to her she laughed! She is really in love with the boys right now, even when Jason takes her blankey away she still smiles at him (generally!). Alright, I'm rambling, I meant to post quick and head to bed. What I wanted to share was that her surgery is on Friday and to gush about how amazing the people in my life are---I got this email last night:
How great are my friends? Hawkins and Crowes delivered a COMPLETE, HOMEMADE Thanksgiving to us, Sharon didn't blink an eye today when I asked her to take Jason yet again for the day on Friday if my mom can't get here because of weather, and my dear friend Cathy emailed tonight to ask when she could have a meal delivered for this hospital stay (she lives in Wisconsin for goodness sake!) The greatness shown us is really amazing. I will spend the rest of my life "paying it forward" and still not make a dent in all that has been given to us this year. I am humbled by your graciousness and generosity. Finally, our little Allison's bronch didn't produce the good news we were hoping for--her hemagioma had grown more and she needed it lasered. There are lots more details but for now, please send her healing, no more growth thoughts. What is the deal with our girls?!!--We actually "passed" eachother in the hospital this time--Allison, Stacy, and Mimi were able to come visit us in Pre-OP as they were being discharged, craziness! That's it, I wrote a book, sorry! Thanks for hangin' in! Again, I'd love to hear from those of you whom I don't know--Crystal and Greetis, thanks for writing! I'll probably have Stacy or Suz update on Surgery, if you hear from me it means we're in the PICU so hope that you don't! Love, Jenn November 22 Home for ThanksgivingSO much to share, so little energy. I do want to thank you all though for your wonderful support and let you know that AJ and the rest of us are doing well (exhausted and sad, but well nonetheless). The emptyness of not having Penny a phone call away is really overwhelming.
Audrey did GREAT for her procedures, came out of anesthesia mad as hell and super hungry. After the "honeymoon" though, she started to desat and needed to be put on Oxygen and we got the pleasure of spending the night at Children's (our first stay there). She had a real rough night (spiked a temp, couldn't sat above 95 even on O2, huge retractions and breathing over 70 even asleep), but rebounded in the morning and got herself together quite well. Giggled at the doctor even! The net result of the tests were that nothing new is wrong and her reflux hasn't caused any noticeable damage to her tissue--definately good news, but leaves us no where as far as getting her off breathing treatments, antibiotics, etc. We came home with Oxygen and a pulse oximeter too---I swear we should have just stayed in the NICU sometimes, they would be so horrified to know how much damn medical equipment we have now! The thought on the O2 is that she does seem to consisitently desat at night (we are going for a sleep study before Xmas) and perhaps if we can spot check her and give her a little support perhaps she'll rest better, grow more, and have more reserve during the day. We've got an official slot for her G-tube too--next Friday (don't hold your breath though, you saw what happened with this last round!)
I want to say a special thanks to those of you who have been SO thoughtful and generous to us this past week--Crowes, thanks for the yummy cookie platter--comfort food does help! Trisa, thanks for helping me pack this troupe up so quickly (without any notice!!) and for spending some time with the boys yesterday!. Sharon, thanks for taking Jason ALL day, transporting Ethan, and for filling my fridge for our return, WOW is all I'm sayin! Nicole and everyone who helped her at the reception--thanks for ALL that food, it was SO nice to not worry about that when trying to get unpacked (from SA) and repacked (for the hospital). Caprice, thanks for taking Ethan (he had a fabulous time!) and more so for coordinating a full Thanksgiving for us tomorrow--Jason and Peggy, thanks too!! Jessica and Ashley, the flowers you sent are gorgeous, thanks so much for your thoughtfulness! Kedroski's and Mitchell's, thanks SO much for making the trip to San Antonio to be there for us, your attendance touched our hearts. Tracy, the time you and your boys spent with Audrey was priceless to me, thanks! Of course, my parents too for making our time in San Antonio as stress-free as possible AND to Super Papa for coming back here with us yet again to help while Audrey was in the hospital. Wow, I have a lot of thanks to be giving--how appropriate that tomorrow is the holiday for just that!
Y'all have a nice Thanksgiving!
Love,
Jenn
PS We hit 65,000 this week--those of you who read that I haven't met, I'd love to hear from you, it fills my heart to hear how Audrey has touched so many. I met several people this weekend at Penny's services and was SO touched. One couple commented how they had just prayed for Audrey that morning--powerful, powerful stuff. November 19 Thoughts for three...This is Susie (aka Gunther) posting an update for Jenn. I saw them tonight at the visitation and they are doing well. In fact, Nathan and Jennifer wrote some thoughts about Penny that they'd like to share with you. (Please see the post below). Our thoughts go out to the family and friends of Penny during the service tomorrow and the days to follow.
Also, tomorrow, please be thinking of Allison Crowe as she has her bronchoscopy. Hopefully, the recent round of steroids was able to reduce the hemangioma and we'll get good news from her scope.
Last, but not least, are thoughts for Audrey on Tuesday. Instead of waiting until after Thanksgiving for all of her tests, they have been pushed up for the 21st. Maybe it was Jenn's daily emails/phone calls, but more likely it was Audrey's last visit to the doctor on Thursday. Poor thing narrowly escaped being admitted to the hospital and fortunately was cleared to travel to San Antonio for her Granny's funeral. In loving memory of Penny MillerIt’s hard to describe a person’s life, especially my mom’s. No matter what words I use to describe her, or the stories I share, it is just a small part of an amazing life. When we were kids she was a great parent. I wish I had the time and the paper to tell you how she took three young kids across country on a bus or how she orchestrated these elaborate parties for every holiday with 20 kids carving pumpkins or waiting in line to sit on Santa’s lap. Whatever I did as a kid, I knew she would be there to be a part of it, I hope I pass that comfort on to my kids. If I could describe some of the qualities that come to mind I would say she was strong in every way. She had so much energy and was always on the go. She loved the outdoors whether it was a walk through a park or being in her own backyard. She was strong-willed, once she made up her mind to do something; there was no talking her out of it. And anyone that knew her, knows she was resilient when life gave her a bad hand; she would take some time, adjust and always bounce back. What I liked most about mom was how positive she was, as I think back today I can’t remember her ever saying anything negative about person or dwelling on a situation. And, even though she was strong-willed she usually went with the flow, it’s hard to describe the smile on her face when you would tell her a plan that she thought might not work out, as if to say “This should be fun” and then she would go with it without complaint. I was asked what I have learned from Mom, to that I have to say she taught me everything I know. - Nathan Miller
All paths start and end. The beauty is enjoying the journey… Penny’s journey, despite its brevity, was most definitely beautiful. Looking through the pictures of her life, one can’t help but feel the joy she took out of life and more so, the joy she gave. From the beaming faces of her young parents carrying their gorgeous bundle home to the twinkling glow in her eyes when looking at each new grandbaby, to all the fun things she did with and for her kids/grandkids, Penny’s entire life was filled with pure love. Her sense of adventure can’t be over looked either. She never turned down an opportunity to go and do. The fun her children had growing up is a gift she gave them that my children benefit from. Who else but Penny Miller would willingly take 3 small children on a bus ride across the country by herself? That story alone keeps me going sometimes when my own three start to overwhelm me! That brings me to the biggest gift she gave me…this past year when we were faced with the biggest challenge of our lives, the illness of our daughter, Penny often lamented on how sad and angry she was that her own illness prevented her from helping us more. What she didn’t realize was that she had already given me the most help that anyone ever could… She raised Nathan to be the man, husband, and father that he is--without him being who he is, we would have never made it through; for that, I am forever grateful to Penny. - Jennifer Miller
November 14 Dancing with the Stars?Why this is compelling television really is beyond me, but so far tonight it has been for me. And, the bonus, I haven’t watched it since the first night (AJ’s first night on the floor after her obstruction repair), and I’ve totally caught up because of their recaps. Not sure if I’ll compare to the voters, but my vote is for Emmitt—Mario is definitely the better dancer but Emmit will win on sheer charisma and the fact that he was a football player who can now dance, a definite feat itself. Now, on to why I’m blabbing about a silly TV show…I need to; everything else is a bit too overwhelming for me right now. This last week has brought me some serious revelations—first and foremost, Audrey isn’t and probably never will be a totally “normal” kiddo and I have GOT to get a grip on that. I keep saying that I’m fine with her delays and her eating issues, but today it really hit me that somewhere in the back of my head I keep expecting her to just start eating and thereby everything else will fall in place. Nate has known all along that that is not going to happen, but for some reason today I finally figured it out. I think the difference lies in a mother’s compulsion to feed, I think it’s a gene we have or something. Anyway, She has basically stopped eating orally this week and started some serious projectile vomiting.. I’m sure it has to do with this congestion, but it has been a slap of reality in my face. I’ve joked several times that I just want someone to take her and fix her, oh what I would give for a day of eating, sleeping, pooping, and playing like I had with my boys. Now really, would I give anything? Would I give up her as she is, her HUGE, literally larger than life personality, NO WAY! I’m just sad and tired tonight and wish I didn’t have another long night ahead of me coupled with another stressful morning ahead of me tomorrow. Now that I’ve spewed my pity party, let me give you an update…Right now, Audrey will undergo all of her tests in two weeks, the 28th and we should just be in over night. I’m beyond annoyed that it’s taking that long, especially since her eating has taken a serious down turn and her reflux has severely increased, but I’m not sure what more I can do (I already email and call daily). Up until this afternoon the tests were scheduled for next Wed (day before Thanksgiving), so at least we won’t be in the hospital for the holiday. I’m scared though that as we enter the holidays it will be even harder to get things done. I’ll probably end up in the ped’s office tomorrow and see what she thinks and if she feels like pushing the envelope further. One thing hasn’t changed; Audrey continues to amaze me everyday. She is shockingly perceptive, overwhelmingly adorable, and admirably strong-willed. She can sit now for a short time, and has giggled at least once a day. Yesterday Ethan was cracking her up and bless his precious heart, the first thing he did today when he got in the car after school was start to repeat the song/dance for her to try to recapture that giggle. I love that kid so much. Nate and recently had a conversation about how interesting it is that you really don’t love one kid more than another (we don’t disagree that one can be more appealing at times though!). Each one has such unique gifts and nuances that it just isn’t possible to love one more. What I realized during that conversation though is that I really admire Audrey almost as much as I love her; she puts up with SO much and has somehow maintained a sweet personality. I’ve only been along for the ride and I’m a total bitch these days. My birthday—thanks for the kind emails and wishes; I don’t think y’all realize how your kindness lifts me up. My dad came all last week to help out, so he joined us for a great dinner out with ALL three. By the car ride home, it had all gone to hell, but dinner was great and all was fine once we got home and got everyone in bed! I received some super gifts too. Among them, a new breakfast table and chairs will arrive tomorrow! Since college, I’ve had 3 tables, all have been well-used second (probably 5th to 10th) hand “finds”. I’m excited that we will all fit at one table, even Audrey when she someday learns to eat! My mom had come the weekend before and by the time dad left on Sunday, my house was in some semblance of order and I had a bit of sanity—thanks p’s for the help, you rule! It was just my dad, me and the littles (J and AJ) this weekend as Nate and Ethan went to San Antonio to see Penny. They had a good visit with everyone despite the circumstances and we held our own here—even went to Jackson’s third birthday party, Happy Birthday Jackson! I’ll close with Jason’s potty escapades—Sunday and Monday night found us with poop in places where poop shouldn’t be; tonight he did it in the potty! “clap, mommy. Clap again mommy” accompanied every push until the final plop; good times! Oops, I have one more thing. It deserves a whole post of its own, but since I’m on such a role (sorry for the length) I’ll leave you with it…. “She laid upon my chest and her breathing filled me almost to beyond what I could hold”
I’ll save the story behind how the quote was shared with me (thanks Karen!) and the flood gates it opened for another time. Go vote for Emmitt! Love, Jenn November 08 I knew my kids were savvy...but savvy enough to hack my blog and post?! Me thinks Aunt Stacy was involved! Thanks for the thoughts, it was a sweet surprise!
What my children really thought about my birthday:
Ethan: "Did you see the beautiful surprise flowers on the counter? Who do you think snuck in our house and left them?" (I just love that he can imagine there's a birthday fairy or something!) and then "mom, are we going to have cake? it seems like we don't always have cake for adult birthdays" (yes we are because your wonderful daddy not only gave me gorgeous roses, he also brought home my FAVORITE chocolate mouse cake!!--thanks honey)
Jason: his fever seems to have finally broke after 3 days and he's attempting to potty-train himself--perfect gifts from a 2 year old!
Audrey: only woke me up twice last night and went back without incident but then woke up VERY congested, puked twice (all mucus), needed 3 treaments between 6 and 9, but then just as I was getting together to take her in, starts laughing, playing and goes back to baseline retracting. She had a bath, ate and is now sleeping comfortably. Poor pumpkin, most kids can't deal with nasty congestion,she has to do it on top of everything else she has going on and does it with a smile.
3 of the best gifts ever, thanks Nathan for them and our life--it's tough sometimes but it's ours and I love it (even when I say I don't
 )If you'd like to do something for my birthday, please send some strengthening thoughts to Penny (Nate's mom) and to Angel Parker's family. Penny continues to struggle and today is the 6 month anniversary of Parker's passing.
Lots o love,
Jenn
Happy Birthday Mommy!!Happy Birthday Mommy!
You are THE BEST mommy in the whole world!!
Love,
Ethan, Jason, and Audrey November 04 6 Months Old!!!Wow! It's been an instant and forever all at the same time. Lately I've been trying to remember those last few days before she came and more so, the event of her arrival. How on earth we had any semblance of calm is beyond me. I do recall the shock hitting me in the delivery room. I never did share her delivery here; several of you have heard the story but for those who have not, I'll just summarize with it was beyond horrifying. Anyway, once everyone left to the NICU and I was all alone, I cried like I've never cried before and hope to never have to again. Seeing a silent, bluish baby pulled from me and then whisked away with just a quick kiss was the dose of reality that sent me over the edge. Those first few nights when Dr. R kept telling us that we may come to the point of deciding to let her go with diginity very soon are still so surreal to me.
We are SO past that now but I know someday I'll have time to deal with the grief of not having a "normal" newborn experience. It actually did hit me recently when a friend had her baby and was telling me that he was crying SO much that she just had to send him to the nursery for awhile; I was instantly annoyed, I didn't get to hear Audrey's cry for 26 days or hold her for 28--how dare she lament to me! I got over it just as instantly though as one of the lessons I've learned on this journey is perspective--everyone has their reality; whether or not it's tougher than yours doesn't matter, it's theirs and they own it--ie I remember when Ethan was an infant and thinking it was SO hard having a baby, WOW has my perspective changed now that not only do I have 3, I have one with special needs; BUT, that was my reality then and I really did think it was hard. Same thing now, life is pretty tough, but I know several families who would love nothing more than to have my life if it meant their kiddos would have made it. Perspective is a good thing to have.
So, if Audrey was a "normal" 6 month old (and really, I use that tern loosely--none of my kids are "normal", have you been around Jason???!), I'd probably just be sharing her stats, so that's what I'm going to do...
Our sweet, sweet baby is 13lbs 4 oz, 24 inches tall and full of smiles! She can roll tummy to back and can almost do the "monkey sit". She recently discovered her feet and loves for you to play "peek-a-boo". Daddy often calls her "grabby hands" because her favorite thing to do is grab for anything and everything near her, hair included. Her big brothers love trying to get her to smile and crack up everytime she "casplodes" (fills her diaper in the most unladylike fashion you can imagine)! She's VERY into mommy right now and will scream bloody murder if she's not ready for me to be out of her line of sight. Audrey Jane is a force to be reckoned with and I'm beyond grateful we have the opportunity to do so. I love you sweet girl!
Thanks for letting me share,
Love,
Jenn November 02 EVERY Starbucks needs a drive thruSeriously, I NEEDED Starbucks this morning after being told Audrey wouldn't been seen by the cardiologist because we were running late and not a single one of the 6 Starbucks I past on my drive home had a drive thru (I had to wait until I got back to Frisco). I didn't want to take her in because she had already been in the car so long asleep that I knew she'd wake up and scream the remaining trip if I dared. And, wouldn't you know it, when I finally do get close to my friendly hometown drive thru, my phone rings and it's her GI doc and so I have to wait to order because I need to talk to him. Note: I was late because AJ decided to cough so hard she threw up and I just couldn't leave her in it (she was already buckled, ready to walk out the door at 7:25; I share this only because I am generally late due to my own inability to get everything/one together and out the door, however this morning, I really had planned ahead and was leaving 1 hour prior to the appt, ugh! Then, I call out of courtesy to say we are on our way, but are clearly late and the rude office girl tells me that we will not be seen even if we do show up but they can get us in at 1:30...that doesn't quite fit with the plans I had for Jason or Audrey's feeding schedule, but hey I was late, I'll figure it out, thanks for being EVER so helpful! Anyway, why were we going to the cardiologist you ask? Oh yeah, the real news...AJ is not having surgery on Friday. Our appt on Monday with a new Pulmonologist netted some nerve-wracking news; he thought her pulmonary hypertension may be back. Good news, it's not! The doc today said he sees NO evidence of it and that her heart looks "perfect"! ahhhh what a relief, I don't think we realized just how nervous and scared we were by that possiblity until we were told she didn't have it! So, we're back to just 2 body systems to fix (respiratory and digestive) Now to check out the other theory--a hiatal hernia is next on our list (uper endoscopy) along with a bronchoscopy and MRI of her lungs (these aren't for the hernia but rather to get a better picture of what's going on there). I haven't gotten these scheduled yet, but they will be done next week most likely. Then, we'll go from there. The G-tube will still happen along with whatever else these tests net us, just not this week. It's only Wed, but it's been a long week already! Overall, she's doing better but still not great. She had a great weekend though which was really nice. We even ventured to a Halloween Party Saturday evening and had a GREAT time, it was our first real outing that felt somewhat normal, thanks to the Hawkins Family for an amazing, VERY Martha Stewart, Halloween party! The boys had a blast and they all looked so adorable dressed up. We will definately try to keep the themed costumes as long as they will let us--this was the 3rd year for the boys (Woody and Buzz; Batman and Robin were the previous years) but I think our trio this year was the best! Enjoy the pics. Halloween was a hoot as well, the loot bags are being closely watched and begged for at every turn! I'm just as drawn to them as they are though---I can't say I'll be back to my pre-preggo self ANY time soon! As Nate says, we're comfort eaters and we need lots o comfort these days!! I just know I'm going to have time to get to everything I've been wanting to share but now I at least feel I'm up to date a bit. Nate's mom is not doing so well, she's back home again as of today though. It's really hard not being able to be there. Think healthy lung thoughts, both she and Audrey need 'em! I hope y'all's Halloween was fun! Love, Jenn |
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