While I sipped a mimosa and had a fantabulous brunch with a couple of my girls (thanks Natalie and Beth!!), Nate not only handled all 3 kiddos, he went grocery shopping for the week with them--yes folks you read that right--all THREE at Tom Thumb on a Sunday no less and one of my dreaded tasks is off the list! 

 

In even bigger news...Jackson Burgess should be on his way home to Dallas sometime tomorrow!!!!  YAY Jackson!  I'm so happy for Kimberly and Adam; what a great family! 

 

Well, I made it through my week of single parenthood.  Without my dad coming to the rescue though, it would have been disasterous to say the least.  Audrey's doc appts alone would have done me in!  Speaking of...she listened well to y'all "thinking EAT", her oral intake increased substantially and she gained 130 grams!  GO AJ, or so I thought until we saw the doc...not good enough.  UGH!  He was pleased that she gained but thinks she should be gaining more and increased her gavage feeds.  She's already taking way less orally and still refuses the bottle.  I spent a good amount of time stressed out and defeated Friday and Saturday but decided today to talk to her ped tomorrow (the GI is on vacation this week) about a new plan.  I want to focus on increasing her oral intake and increasing her gavage is not going to do that.  So, we'll see what her thoughts are. 

The bloody stools are still not resolved either but Dr. An feels strongly that it's the same thing that Jason had (I'm too lazy to look up the spelling right now), but we'll continue to watch it. 

 

I have a few great stories about the boys, a new family that I met, and a great impact story from someone who follows us, but they will have to wait until later when I have more time.  I've given the teaser only to ensure that I will share them, otherwise they will get lost in my craziness!!  Also, I'm trying hard to get on top of thank you notes--those of you that have sent gifts, please know how excited we are about them and a note will make it soon.  Finally, I don't think a welcome home party is actually going to materialize, just too much for me right now; but I would like anyone who would like to come by to know that I love to share her, i just need a little notice, so call or email soon!  Tommy and Connie Hawkins--she loved meeting you  this weekend!!

 

Talk soon,

Love,

Jenn

That's what Audrey needs to do.  She has made strong improvements in her volume from me; however the stinker is on a bottle strike and her over-all intake is still not enough to convince her docs that a G-tube isn't in her future.  Let me start with her GI visit; I LOVE Dr. An.  Jason saw him as an infant;  I loved him then and was again WAY impressed with him.  He's more than willing to wait as long as we want to do a g-tube as well as continue to try new things to get her oral eating up.  His biggest concern is the bloody stool.  He has several ideas about it and I feel good that he'll either figure it out.  He changed her gavage schedule to continuous (we were on every 4 hrs over an hour--we were only sleeping 3hrs max at a time) and lessened her volume in hopes she would up her oral intake.  At first we didn't see a difference but with her ped's suggestion to push her a bit, she's now taking 60+ cc's every feed (I have to feed her for 30 minutes though and she only wants to do 10, not fun!)  She is making strides though, today she took 108 at one feeding.  Her weight, however, is sliding.  I'm hoping though it will even out by the end of the week, like I said, think EAT!  Funny side note though, since seeing him and hearing him talk g-tube, she has increased her oral intake AND had no blood in her stool for 2 whole days (it's back though)!  I swear she understands every conversation she hears.

 

Now, on to some serious props to moms of 3 or more.  Especially Amy D and T Thompson (who has 4 and probably doesn't even have time to read this!).  Those two had husbands who needed to be out of town for their jobs for an extended period of time and they made single parenthood look easy.  Amy used to even come and pick Ethan up for an outing while I was preggo and while AJ was in the hospital--she's my hero!  Nate's been gone since yesterday and by 1:30 today when my dad arrived to help, I was near losing my mind!!  Ladies, do tell how you do it.  Amy just moved to Austin--I miss you Amy!

 

Finally, Sheri Smith stopped by last week and Audrey got to meet her first CDH friend, Jaxtyn.  I've been talking ot Sheri since we were diagnosed but we never were able to coordinate a meeting, it was great to finally meet her and see her gorgeous kiddos!  I didn't get my camera out until they were leaving, but she got pics of Jaxtyn and Audrey together so hopefully she will share those on her site or send them to me--hint, hint!! 

 

I'm off to bed now, Nate's gone until LATE Friday night so I need every second I can get!  Oh, real quick...thanks for all your comments on the Sugar picture, Jen emailed me saying her blog hits were up from y'all checking the photo out!!  She truly has a gift.  We won't see the rest until next month, so I'm sure I'll be raving about her again then!

 

Have a great week, think EAT!

Love,

Jenn

Jackson's surgery is about an hour away, please send him and Stacy and Jeff lots of positive energy. 

I'll update when I hear that everything has gone well and he's resting at home!

 

Thanks,

Jenn

 

UPDATE:  All is well!  Jackson is home and happy!

http://sugarphotography.blogspot.com/2006/07/we-finally-meet.html

 

 

Jennifer Weintraub of Sugar Photography came to our home today to do a photo shoot of Miss Audrey and her family.  I originally heard of Jennifer through scotthousehold.com as she did photos for them.  As we were preparing for Audrey's arrival, I learned of an amazing group of photographers called Now I Lay Me Down to Sleep .  They take photos for families of babies who don't make it.  I had them in the back of my mind, but didn't want to contact anyone before AJ's birth just out of plain fear (making those kind of preps in my head were scary enough, not too mention the real plans Nate and I had in place for the worst).  I had told Stacy though that that would be one of her tasks if we were in that need.  We aso learned of the other organization that Jennifer is a part of for seriously ill babies and that's where Stacy discovered that Jennifer was a part of both.  I remember when she told me on Audrey's second day; I totally didn't understand why she was talking about Sugar Photography when that was the one who did Maggie Scott's photos (I wasn't following that she was a part of the organizations too).  Jennifer was so wonderful to me that first week when things were so touch and go for AJ.  She offered to make herself available no matter what and then when AJ started to improve, she kept up with us asking when she could come photograph our superstar.  Today was the day!  The link I have above is Jennifer's blog, she has a site for her work as well http://sugar-photography.com ; check out both, you'll be amazed.  Also, check out her July 6th blog entry to see Audrey's best buddy Allison with her daddy. 

I have lots more to share but sleep is calling!  Thanks for all your kind comments and more so for being a part of this journey with us.  It's starting to feel like just life now, and that's pretty sweet!

 

Lots o love,

Jenn

Today is my parents' 36th wedding anniversary.  Have a great day Grandma and Papa, we love you! 

They were here this weekend and their departure was a bit sad to say the least.  They've been with the boys since May 1.  How do you thank someone for that?!!  We are so blessed. 

SO, that means we've been on our own for nearly 48 hrs...oh man 3 kids is tough!  All is well though, Nate and I even managed to get the house whipped into shape tonight when everyone finally went to bed.  Miss Audrey is doing well-- still gaining steadily despite herself!  Ethan says today, "why does she always cry when she burps?  she cries everytime she eats, that's weird mommy"  I started to try to explain in 5 year-old terms, but how do I say "her guts grew in her chest and just don't work right" so he'll understand?  I ended up just reassuring him that it'll get better.  He was good with that.  We see the GI doc on Thursday so hopefully he'll have some ideas about how to progress on feeds.  I'm pretty confident about what he'll say about the blood in her stools too, we'll see.

She's good though, smiling much more frequently and....cooing!  she'll just "talk" up a storm, it's the cutest thing ever. 

News and thought request...Stacy's son was just diagnosed with a (are you ready for this?) congential inguinial hernia.  It's apparently a very common one for little boys to have.  He'll have to have day surgery to repair it though so please keep our little man in your thoughts.  I know this hernia is nothing like Audrey's, but how weird is it that both our kiddos have a congenital defect?  The doc who will do the surgery is the same who removed Audrey's central line. 

 

Finally, some shock and awe--- we received AJ's hospital bill last week--JUST the hospital, not her care, not her labs, not her surgeries (we've been seeing the insurance statements from those for a while) and the total was 400K!  Thank goodness for insurance is all I'm sayin!  Healthcare costs are shocking. I'd pay it twice it though if it meant the same outcome. 

 

Please keep praying for our CDH families and keep Jackson Crowe in your thoughts too!

 

Have a great day everyone! 

Love,

Jenn

I didn't want to write after the devastating news of 2 more babies lost to CDH, but I also want to be sure that Audrey's story remains complete to give hope to expectant moms.  Some kiddos do make it and do great; no crystal ball (or MRI, or Ultra sound, or surgeon, or med journal) can tell which ones will, but some do.

 

Audrey has had 2 great days after a miserable Wed which landed us in the lab on Thurs to get  chest and ab (KUB) x-rays, urinalyis, and a home stool-collection kit.  She's totally fine, in fact the whole time we were waiting at the hospital on Thurs (about 4hrs total, ugh) I knew we didn't need to be there.  I don't fault her ped though, she was just being cautious and it was nice to be reassured.  On Wed, AJ basically cried all day and refused to eat until 6pm and then spit up the entire feed when she did.  She did ok with her gavage feeds and then was fine the next day after one episode of inconsolable crying.  Her doc thinks she may have had a small tummy bug that she had seen lots of.  I hadn't felt good all day Tuesday so I think that could very well be it; who knows?!  i'm still learning all the ramifications of CDH, we have to worry about normal stuff too?? !!!

 

Anyway, she's doing great now.  She's taken to projectile spitting one feed a day (nearly the whole feed anyway) and spitting up tiny amounts of others during the day, but she's fine after (happy actually!).  She's gaining steadily too, so I'm hoping maybe she's just trying to tell us she's ready to give up one of her gavage feedings.  We're going to play with it this week.  She took her biggest oral feed today too, 68cc over 30 minutes! 

 

Biggest news of the day, the boys are back and AJ's grandma finally got to hold her!  Jason's first word out the car was, "Audrey?".  After loving on E and telling him it sure was quiet around here without them, he says, "didn't Audrey cry much while we were gone?"  I just love my boys! 

 

That's all for now; please keep those families in your thoughts.

Love,

Jenn

I need to keep reminding myself of that.  That, and how grateful we are to even have the small problems we are having.  I know lots of mom would do anything to be frustrated over feeding issues if it meant they had their babies.  It's all perspective I guess.  One of AJ's doc's favorite sayings was "don't be greedy" whenever we were asking about her progress.  I'm trying hard. 

She is gaining so she's doing fine, but we're not able to make any dents in her gavage feedings, she still won't take more than 30 - 50cc's at a time from me or the bottle, there is still significant amt's of blood in her stool (although now it seems to be tied to breast milk), and she still appears to be in pain.  I think I just thought home would be some magical cure for her and I'm disappointed that it's not so far.  Maybe she needs those crazy boys back!  They return Friday.  She is smiling more now, that is a new wonderful trick! 

 

On to more pressing things...I've recently been "introduced" to a few more CDH families by a NICU mom who found our site.  One of the babies was born in April and is doing great, home and happy!  The other, Judah, is being taken off ECMO today as no more medical intervention can be made for him.  Please pray for him and his family.  Their site is http://www.babyhomepages.net/judah/  It just breaks my heart to hear of yet another CDH baby not doing well.  I also got an email about about another CDH baby, Gabriel, who didn't make it.  He was born and died last week.  Please pray for their family as well. 

 

I just HATE this defect, HATE it. 

 

Baby Mert has started his battle, is in surgery as I type.  Be strong little fighter! Jackson is extubated and doing GREAT!!  I'm so excited.  He and Audrey will be getting together before we know it!   Sofia is doing well, she's a super eater, gaining like mad!  Drew and Avery were suppossed to be with us too, it justs maddening and mind blowing that they're not.  Jana and Lauren, I miss your babies everyday.  Parker and Jolee Jean are never far from my thoughts either.  One day no more babies will die from CDH, one day.  Until then, please keep praying.

 

Jenn

 

 

 

 

Jenn