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June 27 Just Talked to Jenn1) Audrey is gaining weight!! Keep up the good work Jenn and Audrey.
2) Jackson is having surgery. Please keep Baby Jackson and his family in your thoughts and prayers.
3) Jenn has just read about Baby Joseph and is devastated by the news. Please keep Baby Joseph and his family in your prayers.
Love to all CDH survivors, angels and their families!
Stacy June 26 "We need to make more Audrey"That is the phrase I hear everyday. She's been losing a little weight everyday and that just doesn't make anyone excited about sending her home. She's made improvements in her intake from me though, we are now up to at least 20 + every feed! She's on demand for 12hr/day and gavage (tube) the other 12. Please send her growing thoughts--we want to go home!!!
Love,
Jenn June 24 HAPPY BIRTHDAY JASON!!Hr 48 and doing well. We're having fun together and she's eating enough from me to get by but if y'all could send her some "eat more than 30 cc's orally" thoughts that would be GREAT! The boys are in S A this weekend and we're having our girls weekend here, we'd love company too as long as you're healthy, just call my cell. Finally, Nate's mom's cancer has reared it's head again, please pray for strength and healing. Lots more, but my words are limited here. Love, Jenn
One more thing...Happy 2nd Birthday to my dear baby, Jason! We had a mini-party earlier in the week. I will post pictures soon. June 20 The PlanAJ is doing well! We're still struggling to make strides with feeding but we haven't taken any backwards steps, it's more like we're on a plateau. She just can't take more than 40cc's orally (she usually stops between 20 and 30), she's been spitting a bunch, and gets REAL tired out (so she only does 4 of 8 feedings orally). She is doing better with taking the bottle but, breastfeeding is definately her preference.
A baby in normally not released with a gavage tube (the Nasal Gastric tube--one in her nose) unless they are taking 50% of their feeds orally. Since Audrey may just need more time and home may be a better place to make strides forward we are going to give her a trial run at breast feeding around the clock and then decide after if we take her home with the gavage tube, have her stay to make more progress supervised, or consider the G-tube now (surgery required). We're also trying some other drugs and fortifiers to try to alleviate the reflux. I "move" in with her on Thurs. I'll try to write again before that to give more details, I'm just pressed for time right now.
Thoughts to all the other CDH families, I checked on everyone last night for the first time in a few days--Jackson is really making strides, yay!!
Talk soon, Jenn June 17 Trial SchmialWho needs a trial when you can just do it?!! Canula-free for over 48hrs! Thurs we started talk about going home! We're shooting for before July 4th, I'll give more details later as I can't write much from the hospital. Short version--eating is hard work when your insides grew in the wrong place! Look for more info and pics later--time is hard to come by these days. June 15 Happy Birthday Daddy!!!Today is Nathan's birthday! Audrey's amazing recovery is his biggest gift, but the boys got him some new clothes and a new steering wheel cover too. Poor Nate has our anniversary, his birthday and father's day in about a week's window, he always gets shafted on gifts! I did give him Madden 06 (Xbox game) for our anniversary though. Happy Birthday honey, I love you!
Today is also Baby Jaxton's FIRST birthday, Happy Birthday big guy!! What a milestone, enjoy your day you big CDH fighter you!!
AJ is doing great, we had lots o fun yesterday playing and taking a bath (it was the first time I did most of the bath!). She still has her canula but I think today we may try a trial off. Her feeds are going steady. She's been spitting up a little but hardly anything. I'm headed up there early this morning so Nate and I can go to lunch together later.
Have a great day everyone!
Love,
Jenn June 12 21%!!!Superstar has been hanging tough on 21% O2 for 24 hrs now!! She still has a little flow (.4 Liters)but could be off her canula by the end of the week! We still have a LONG way to go on feeding, but she'll do it. She's very sleepy today so I have a minute up here, I'll write more from home later.
Love,
Jenn June 10 Princess AudreyI'm not much of a "princess" kinda girl and didn't think I'd ever consider calling my little girl one but that is truly what she is...she's wearing a shirt today from my friend Amy's kiddos that says "I'm the Princess, we'll do things my way". She really does call the shots and we're going to let her (for now anyway!) Hopefully she won't get too used it.
She continues to do well with the bottle and breast. She's still doing about the same amounts, but she did have one session that netted 40cc's! It really tires her out too, she's building stamina though; hopefully she'll start to take more this week. She's such a little sweetheart-- as long as she has a clean diaper and her tummy doesn't hurt, she's happy as can be. She loves her mobile and especially her mirror. I will try to get a better pic of her staring at herself, she's so serious checking herself out! The first pic of her is the one her nurse took without tubes, isn't it gorgeous?! Yes, the shirt she's wearing say's "Audrey Jane", that was compliments of Suzi (Gunther), isn't is adorable?!
Finally, Allison Grace is a beauty! LOTS of black hair and gorgeous skin. She didn't open her eyes for us, but I saw a pic and they're beautiful too. It was SO great to hold her--no wires or tubes to be careful of! She has best chubby legs too. Just love her!
Did you see the progress Jackson has made this week? Sofie's home now and before we know AJ and Jackson will be too. Their progress is so encouraging and yet our hearts still break for the babies we lost. I watched Drew's new slideshow last night and just cried. On Monday, AJ will be as old as he was when he passed. I used to be sure that somehow the five (Me, Lauren, Kimberly, Catherine, and Jana) of us would all beat the odds. Now we've met so many more and our numbers are worse than the general 50%. It just sucks. Sorry to end on a downer, but it makes me so mad (and a hundred other emotions) when I think about it.
Look at the pictures again to relift your spirits, our miracle can put a smile on anyone's face!
Have a good rest of your weekend.
Love,
Jenn
June 09 Allison Grace has arrived!Mom and baby are doing great! 8lbs, 5oz
Congratulations Stacy, Jeff and big brother Jackson! GREAT Day!What an awesome day...
1. Sofia is home!
2. Audrey had an AMAZING day (I'll give details below)
3. Baby Allison arrives tomorrow morning (Stacy and Jeff's new addition and Audrey's future best friend)
4. My dad arrived today and got to see Audrey 2.0; the last time he saw her she was still paralyzed and on Nitric and HFOV! I got some pictures of he and my mom Audrey gazing, too sweet!
5.. Audrey's nursery got an amazing addition from her sweet daddy...our anniversary was yesterday (9 years) and Nate decided her pretty nursery needed a new cushy rocker. It's so comfy and matches her nursery beautifully. We had a wonderful dinner out too, everything about it was perfect. We went to visit AJ after and she was perfect too! Ijust found out that it was one of my new friend's birthday yesterday too, so happy belated birthday Stacy E.!
AJ's super day...I got in this morning to find her in JN's (our first contact at the hospital) arms; I just love it when I "catch" the staff spoiling her (or even just hear about it), it makes me feel good how much they love on her. She sated well all day, wasn't fussy, slept well, "played" well, and...had 3 successful feeding trials--1 bottle (28 cc's) and 2 nursings (25 ccs, and 34 cc's)!!! Her total volume per feed is 85cc's, so she took 1/3 orally for 3 of 8; that's amazing progress! Not one spit up either. When I got there tonight every nurse or RT I ran into knew about her progress too; I love how so many seem interested in her progress and come by to check on her.
Stacy came to see Audrey today as she'll be a bit busy in the coming weeks with Miss Allison. Please think of her tomorrow. I know everything will go well but some extra happy thoughts won't hurt! I can't even begin to express how thankful we've been for Stacy throughout this journey. At times I thought she was the mom as she has learned as much about CDH as me! She's been with us every step. I love her more than words can say, thanks Stace, you're the best. I can't wait to meet Allison tomorrow.
Have a great weekend everyone! I'll post pics tomorrow, I'm off to bed.
Love,
Jenn
June 06 20 CC's!Superstar AJ took 20ccs of MBM (hospital speak for "mother's breast milk") by bottle without any spitting up after! It's quite an accomplishment for our little wonder. She did 10 yesterday but it wasn't with near the style, experience, or grace with which she was able to pull it off today. FYI, 20 cc's is about 1/2 an ounce, not much in normal baby terms, but gigantic for Audrey. Especially considering how snail-like the feeding process has been going lately. Poor pumpkin is definately having some reflux issues. She's had to go up on her O2 a little as well as her flow to compensate for all the work her body is doing but she's still at minimal numbers (40% at .3 liters). We had to go back to 2hr feeds too as 1.5 hrs was just too tough for her. She'll get it though, she just wants to go slow. This morning was particularly hard (spitting up, desating, etc) but she rebounded so well that we were confident enough to try her on the bottle again this afternoon and that's when she took the 20 so well. We'll just see how she does tomorrow. Nate just left the hospital and she was doing fine, still desating a little and squirmy sometimes but resting well once her feed was over (she gets a 1 hr break between).
We didn't move afterall. It's in the orders that it's OK for us to move, but her doc said as long as the bed isn't needed she can stay put. I think everyone is happier that way for now.
Check out the new pics, she's SO sweet. The first one is a scrap book page one of her primary nurses, KJ, made to celebrate her 1 month birthday. Isn't it awesome?! I was so touched by the time and effort she took to do it. Look closely at the picture on it as she took it when they were changing all Audrey's tubes out so she's tube-free (they had blow-by O2 on her, don't panic)! Her cheeks are delicious, so chubby and sweet! She's going to bring me more copies and I'll scan them in so y'all can see better. I can't say enough about the people that care for our baby. The love they show her makes us feel so good. Her nurse today was so excited about her bottle feed she had tears in her eyes. Good, good people.
Nate just pulled in so I'm off to hang with him for a bit before bed. Jolee's passing has really gotten to us. Please keep her family and all CDH families in your thoughts. Something needs to be done about this defect.
Love,
Jenn June 04 Our Deepest Condolences to the Scott FamilyJolee Jean passed away today. Please pray for her and her family. Our hearts are so heavy with this news. June 03 Movin' on up...to the 5th floor (Special Care Nursery). We think anyway. Talk started today about whether we should be in a NICU garden room or at Special Care as AJ is just not sick enough to be in the Critical nursery anymore! Good news for sure but scary for us to leave the nurses that know her so well and the safeness of familiar territory. No move has been made yet. We'll se what happens tomorrow.
Her biggest issue now though is feeding and that's what they specialize in upstairs. She's been losing weight the past 4 days and spitting up occasionally (projectile vomiting actually), so we have some fine tuning to do with her feeds as well as get to bottle/breast feeding of course. She's started Zantac and Prilosec too.
She's still on O2, just a whiff really but she can't seem to sat well without it. Poor kiddo only has 1/2 of a left lung though and is doing beyond great so if she wants to keep her O2, we're letting her!
The boys are doing well; done with all this, but well nonetheless. We had some unexpected visitors last night, it was GREAT to see my Aunt Kerrie and Uncle Brad who detoured their Route 66 road trip to stop by--Thanks for realizing how close you were and calling! Nate just got home from the hospital and Audrey had a great evening. We're headed to bed early so we can both be up there tomorrow for the move if they make it.
Thanks for your kind comments, we love reading them.
Talk soon,
Jenn PS Marcelle, it was great to meet you yesterday! Thanks for keeping our precious girl in your thoughts. The support we've been given by people like you who didn't even "know" us before this has been SO touching, really amazing, thank you! June 02 So sweet!We're doing well! She's slowed down her crazy pace, but doing amazing nonetheless. I could gush and gush about how good she looks and how wonderful it is to not fear for her life anymore, but I need to sleep so I'm just going to update...
She's doing great off the vent! She's only on 65% O2 at .1 liters (that's way less than kiddos get sent home on). She definately needs that little bit though as she had her first trial off today and couldn't sat above 89%. Just Mon night though, her canula got unhooked from the O2 and she desated to the 40's immediately--so, she's stronger than she was then!
Her feeding is going well but she's started to show some signs of reflux (spitting up) and she's having a little trouble putting on weight--she's about 8lbs 7oz (birth wt was 8lbs 8oz), she had been at nearly 12 lbs with all her swelling! She's still being fed through the NG tube but her feedings have been compressed to 1.5hrs on and 2.5 off (moving towards a normal feed). She's up to 105cc's a feeding (a little over 3oz). Her breathing rate is still high, but once she gets that down we'll get to start trying her with the bottle. We've already tried nuzzling at the breast. She did great the first 2 days but wasn't interested today.
The clot in her abdomen has resolved itself and her central line was removed without incident. The ab sono did show some possible gall stones, but they should resolve themselves.
Big picture, she's doing so well--beyond anyone's greatest expectations. Feeding and maintaining good O2 sats are her main issues right now. She'll figure it all out before we know it!
If you follow the comments, you've seen the 2 new CDH families, please add them to your thoughts. Sofia and Jackson continue to make progess, I can't wait until we can all get together to play! Jana and Lauren continue to amaze me, I thank their precious angels (along with sweet Connor) every day for watching out for Audrey.
Audrey's surgeon, a man that Nathan and I absolutely love, was in a helicopter crash this weekend. He and his family are ok, but please send them healing thoughts.
Finally, I have another healthy baby to say welcome too--Madeline Jean was born May 30th, congratulations to Cathy, Mike, and big sister Sabrina!
Thanks for keeping up with us!
Love,
Jenn |
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