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March 31 3 on 1I'm outnumbered; their team is more than double mine and reinforcements don't arrive until Sunday evening---send energy! Yep, I'm a single parent my friends and it's raining now with no hopes of stopping (ie no "lets go for a walk, play in the sand box, etc etc etc" agh!). Nate left this morning for the annual "off site" that spouses are invited to, I don't get to go this year though. It's in Vegas and he then goes to Redmond (Microsoft's Seattle suburb) for the rest of the week. Papa is coming Sunday night and the Fisher girls helped out tonight so I just have 2 more days and one night to get through--I CAN do it! I'll post a picture tomorrow of how Jason started out this adventure this morning--kid you not, by 8:30 he had already gotten into something picture worthy while I was gavaging (tube feeding) Audrey and couldn't physically stop him, "I need to Mommy" he says!
Thanks for all the fun comments about the ad campaign, I appreciate it.
I'm off to bed but wanted to post a few things that I've been meaning to forever...
My friend Sharon emailed me last month about her participation in Relay for Life asking for permission to walk in Penny's honor. We are so touched and honored. Her team has raised over $4K already but has a ways to go to it's $10K goal. Please consider donating.
Austim's Walk Now is coming up as well. I'll be walking with team Action Jackson for my favorite little Crowe man. I set my fundraising goal at the minimum as I hate to ask for more from y'all after all everyone has done for me this year; but here I am, asking you to consider to support Austism research by sponsoring Jackson's team.
Finally, Jessica Singletary, Parker's mommy is walking for March of Dimes. CDH doesn't have their own organization yet (people are working on it though!) so March of Dimes is our avenue to help. Please visit her page and consider helping her reach her goal. The Dallas Walk America is coming up too, I just haven't had the time or energy to invest in doing it yet--I may still walk, but perhaps next year I'll get more involved. Annie Bunger, I'll be looking to join your team for your sweet, sweet miracle micro preemie, Braden!
I feel like one the Presidential hopefuls asking for so much money but they are all causes I feel passionately about. I wish more than anything I didn't have such an intimate knowlege of the fight each wages.
But I do and so I ask.
Look for more play by play of the craziness to ensue this weekend. I'll need to blog for sanity! Happy Birthday to Aunt Sarah, we'll be wishing we were celebrating with you! Have a great day!
March 29 You bring your fight, we'll bring ours.We chose Presby Dallas to care for Audrey Jane a little over a year ago, it was a decision that we put a lot of time and miles into making (we toured Houston's TCH, San Antonio's Santa Rosa, and Children's Med Center Dallas)--if you're a long time reader, you remember the agony of that decision making process(see the Jan/Feb 06 archives). It's not an ECMO hospital (anymore) which was a HUGE risk in the eyes of many but we knew it was the place. I knew they were going to fight for Audrey as much as we were and if the fight needed to end, then we trusted them for that too. Audrey brought her fight and then some! Now she's going to represent Presby in their latest ad campaign, You bring your fight, we'll bring ours. April 6th's Dallas Morning News will run her ad and in June she should be on some billboards and buses. A radio ad is in the works too. We agreed to do this primarily to raise some awareness for CDH but too, come on, how cool is it to be on billboard?! At our first meeting I started hinting how great it would be if Jen W (Sugar Photography) could do the shoot--OK, maybe hint isn't the right word, they commented on the picture on our mantle and I immediately tell them the whole meeting story and show them the slide show!!! Subtle is not my strength. If your baby was going to be on a billboard wouldn't you want the best? (Then they dropped the bomb that they wanted me in pics too--I negotiated down to the print ad!) Even though this is totally not her thing, Jen graciously took it on. Today was the day. A model I am NOT and neither is my daughter. Is she gorgeous? yes; cooperative and easy to shoot? not so much. Everyone was SO nice though; patient, kind, and accomodating. Still, I don't think we'll be asked back!! Here is the sneak peak from The Sweet Life. I'm not going to share the whole ad yet but I'm real excited about it and even more excited about the direction they're considering for the radio ad. So, I updated on one of my teasers from last time. Look for the date story soon as well as this gem from Ethan, "so I learned a new fact today; Jason and I have stems (sperm) and mommies have eggs". NICE. March 26 When?When will they all just live? Two more CDH babies whose mommies belong to the online support group I frequent have gone to heaven in the last 2 months. RJ earned her wings on Saturday just 5 days shy of her first birthday and after only being out of the NICU for 2 months. I've been a little clingy with Audrey since I got that email. Poor pumpkin is getting tired of me asking her to do her latest party trick..."give mommy a kiss", she leans in with a gapping mouth, gross but ever so sweet too, I just eat 'em up! Another sweet baby boy, David, was lost shortly after birth in February. Please send those families your thoughts and hug your kiddos a little tighter.
I'll try to write more later this week, we've got some great things happening at the Miller household--awards for Ethan at school, poop in the potty for Jason, a new photo shoot scheduled for Superstar with our fabulously talented friend Jennifer of Sugar Photography, and a date night to remember for Nate and I (NOT)!
Strength and love to the Prochaska Family.
March 16 Happy Birthday Avery Mae!Tomorrow is Avery's birthday. Please send Lauren and her family your thoughts of peace and love on what will undoubtedly be a tough day. I can't believe it's been a year. I SO clearly remember Lauren's waiting time in Toronto; her due date coming and going, setting up her MSN space, her first email to me after Avery arrived, it seems like yesterday and forever ago all at the same time! I'm so proud to know Lauren, she's one amazing woman who has even more greatness to come in her life; I'm so excited to watch it unfold. Avery must be SO proud of her mama; I can't wait to hear of the latest "17" signs she'll send her to let her know! Happy Birthday sweet girl!
Our girl is doing well. She got yet another nasty ear infection this week (nasty amounts of blood draining from her ear, YUCKY) but it's already improving and she's hanging tough respiratory wise despite whatever cold caused the congestion. Her new party tricks are a hoot to watch too; she's mastered raising her arms up to signal "SOOOOO big" when asked "How big is Audrey?" and patting her head when asked "where is your head". She weighed in at 17 lbs this week too; I'm hoping to keep it there, but she hadn't pooped for 2 days when that weight was taken, so we'll see!! I swear if we could get her digestive system to work right, EVERY thing else would fall into place, ugh! She's made some big gross motor strides too--tolerating tummy time for MUCH longer, pivoting on her stomach and when sitting, standing when propped, and attempting to roll back to front much more often. We've had a nurse her 3 days/week for the last 3 weeks and it has been SO, SO great. This Fall would have been A LOT easier if we would have had the help then. Right now we have her for 1 more week and then we're going to try to get AJ on a state program that will give more hours. Our intake in March 27th, so perhaps by May we could be back on service. Keep your fingers crossed. I've gotten to do SO much more for/with the boys and for myself these past 2 weeks than I have all year, Audrey is making such strides too having someone completely all to herself. Her eating isn't improving tons, but it's taking baby steps. Her big leap though has been to drink from a straw!! She's taken nearly an ounce of liquid once; mostly it's 20mls here and there, but one time she did manage nearly 30; SO excited about that.
I could probably go on and on since I haven't been so good about updating lately but I'll end with some proud boy moments...Nate got a great promotion, Ethan mastered riding his bike in less than an hour (after not being on it since last spring), and Jason can stay dry for a whole day if he so chooses (he doesn't seem to want to chose that route very often though so we're still a ways off from officially potty trained--remember the big boy bed transition??!! UGH!).
Talk soon,
J March 08 Happy Birthday Drew!Today marks Drew Lewallen's first birthday. Please think of him and his wonderful family.
Jana's entry today was a tough read for me. She recounted what she remembers about this day last year. Audrey's actual birth is something few people have heard about. I've shared a few parts of it with some but reliving that experience is traumatic to say the least. There are images and feelings burned into my soul that will take a lifetime to let go of. You'd think since I have her, that she survived ,that those memories would fade and the pain wouldn't still cut like it does, but that's just not the case. I've also started to get a grip on what others have coined as the grief of losing a "normal" infancy. Of course one can say, "what's normal?" (heck, we have Jason!) but Audrey's life is not normal. Do I have good perspective? Yes, I am fully conscious of our grace that she survived at all, that she only spent 60 days in the NICU, that she's not trached, etc, etc. but I can still be sad that I didn't hold her or hear her voice until she was 3 weeks old, that she didn't have an umbilical stump to care for and wait to fall off, that she never nursed around the clock, that I never got to unfurl her from that sweet, tight curl newborns get themselves into, and that I know WAY more than I ever wanted about hospitals, medical jargon, etc. and most of all, that I now know what it feels like to hear "it might be time to start talking about letting your baby go with dignity" and further that I do know SO many sweet, sweet babies like Drew who never even got the chance to go home and let their mommies be pissed off about stuff like this.
Prior to reading Jana's post, however, I was coming here to share Superstar's week (big eating strides and she got a nurse!) and to brag on the boys. The tears started flowing though and the above is what you got. It's still amazing to me how getting it out here frees me of it for awhile. Whenever I think I'm going to let this blog go, somthing like tonight happens and I'm remember how cathartic it is.
Scratch the move to more positive news, I just got back from yet another projectile vomitting episode. As in, just as I hit the period for the previous paragraph, I heard Audrey start and I'm sitting down now (30 minutes later) to say, I'll update later. She really is fine, we are messing with her feeds though and she's not completely on board and would never dream of telling us subtly!
I'm going to bed, I will hopefully be back soon to share all the fun going on here.
Love,
Jenn
PS Does anyone have an old (and I literally mean old) baby monitor that we could borrow? Audrey's (although fabulously chic) doesn't pick up the sound of her pump alarming. You can hear everything else going on in that room down to her breathing, but her pump can be alarming (imagine an obnoxious beeping alarm clock noise) and it does not come through on the monitor. My theory is that since it's newer that perhaps it filters that frequency out or something (please don't tell me how ridiculous that is if it is, I'm a humanities girl people), anyway I'd like to test some others out before I buy one. She's gonna end up back in our room if we can't be assured that we'll hear if something's not right with the pump. March 04 Happy Birthday Jackson Burgess!!!1 year ago the waiting ended....the first one of "our" babies was born; "our" referirng to Kimberly, Lauren, Catherine, Jana, and me as we had all been brought together by this horrible defect and shared our pregnancies. Drew would come just 3 days later, then Avery, we lost Avery, we lost Drew, then Sofia, and finally Audrey. We "met" Jessica in April and Parker arrived just after Audrey. What an emotional next 8 weeks. Unbridled joy mixed with debilitating grief.
I can't tell you what I would give to have all the babies together, a party for 6 odds defiers, we could be on Oprah or something! I remember distinctly the moment that the thought entered my head about the odds for CDH survival and what it may mean for our little group. I just knew we were going to beat them, we had to; oh how I wish I would have been right. We will celebrate each of the babies though and each of their valorous fights. Let the parties begin! Jackson, happy birthday little man!
Our circle has grown considerably since the six preggos "met" last year; I'm SO grateful for knowing each one. It continues to grow too, a few babies have recently arrived, several are due soon, and I just received an email from a 30 yr old survivor! Look for more about that soon. Please remember all of these families when you think of Audrey Jane.
Lots to share but no energy right now (seems to be a recurring theme, sorry!). Had a super weekend with a visit from Gunther and family; everyone is finally on the mend (Ethan had pneumonia last week and AJ another ear infection), and tomorrow we have a GI appt that will hopefully net me some help with my frustrations over Audrey's eating. I will try hard to update this week!
I hope all is well with everyone; I've been SO lame about email and catching up. I still owe a few thank yous from as far back as September for goodness sakes, I suck. I'm going to try to get better though--I have help this month too so hopefully it will make a difference! Talk soon!
Love,
Jenn |
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