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April 26 She's stayin' in!Not dilated, not anymore efaced, she's stayin' in! I'm so glad. She looked great today too; was "practicing" breathing the whole time we were looking at her, right lung was visible, heart looked/sounded strong, liver down, and weighed in at...8lbs 3oz! Surely that's going to be like Avery and Sophia and be over, but both the peri and ob were quick to say it could be under too--a pound either way is what they both said. The bigger the better I guess, but I want her out quickly and safely too. Also, not normally something I share, but I find it interesting...I gained 6 lbs this week. The last 3 weeks, I've lost a pound or 2 each time and I've never gained that much from one visit to the next (not even when my visits were a month apart) so I'm not sure what that means. It put me over 32lbs gained total too (more than my other pregnancies). My fluid was lower too, but looked totally normal. Who knows!
My plan is that I make it to my appt next week and have her on Thursday. Nate doesn't feel like I'll get through the weekend though(had several Braxton Hicks again this evening)--he even told me not to come to soccer practice tonight, "stay home with your feet up" which is SO not like him!! He has a presentation tomorrow though and stuff to turn over on Friday so can be totally work-wrapped (FOR A MONTH!!!)
I went to practice and it was so worth it. It was the last one so Coach Cris decided to let the boys run it themselves, it was a hilarious sociological experiment; I'm so sad we didn't have the video camera!
I'll close with a few cute/sweet Ethanisms...
Today, I hit a mailbox when backing up and after getting out to check the damage (the mailbox was fine, my car was not), my girlfriend (who's house we were at) told me to tell Nathan I had a contraction or something, so I was laughing when I got back in. Ethan says in a stern voice, "mom, why are you laughing, you just crashed, that's NOT funny"
Yesterday, he asked me if he or Jason had been sick when they were in my tummy and when I told him no, he so innocently replied, "then why does Audrey have to be sick mommy?"
He then went on to ask if he was going to be able to see her in the hospital and when I said yes and that he can touch her hand and talk to her, his response was, "oh OK" like everything was going to be fine since he knew he was going to see her--I think he's right, kid's know these things!!!
Have a great week. Keep those prayers coming, we all need 'em!
Talk soon,
Jenn April 24 I guess I asked for it....but 10lbs 10oz??!!! Good grief Beth! (If you haven't read through the comments where people are leaving their weight/date guesses, 10 10 was Beth's guess!) Stacy wants a 10 pounder too. They do say the bigger the better, but I do have to get her out safely too you know?! Beth's dream though was a fun one to hear---Audrey has white, Jason-like hair and light eyes and did great! I hoping she's a bit psychic as I'd love for that dream to come true!
The size thing leads me to comment on something Jana posted about today---premies in the NICU~I, too, have been told time and again by the team that will care for Audrey that she will more than likely be the most critical in the unit but will look the best (if she's not super swollen) because of her outside maturity; unfortunately (for us of course only), her lung volume/function may be way worse than those premies, even those born as young as 25 weeks, man that's hard to swallow.
Not much else to share; had LOTS of Braxton Hicks tonight but I think it was just a function of having the afternoon off (thanks to Natalie for taking Ethan for a fantabulous treat of a movie after school with his buddy and to Jason for taking a 3 hour nap) and then going 100mph with the boys after. They've pretty much stopped now (the contractions--the boys never really stop, not even in sleep
 )and I'm off to bed after this post.I talked to Catherine yesterday; she really sounds great (tired, but great!) and Sofia really is doing super. I HATE how little the NICU is open for her, but it sounds like they are swamped with CDH babes. Jackson is having some infection issues, please say a specific prayer for him asking for it to clear up without complications. Lauren leaves for Florida tomorrow, I hope the different scenery does her well and she enjoys the time with her friend and nana (who sounds like an amazing woman by the way!) Jana posted about her first "getting back to normal" day; I'm so proud to call her my friend and we've never even met in person!
Finally, I've gotten several emails/comments from "strangers" this week, people who have found us through the other families and another CDH family who's kiddo is doing great. Thanks so much for following us and sending me such kind words along with your thoughts and prayers; I can't tell you how touched I am by your generosity!
I'll post after my appointments on Wed; keep your fingers crossed that I have no news; I want to keep her in as long as possible! Keep those guesses coming; we love reading them!
Talk soon, Jenn April 22 Countdown Insomnia has startedUgh! I've been up for 2 hours already (it's nearing 4am) so I've finally decided to just share the time with y'all. I remember having this at the end with both boys so I know it's not anything to do with the anxieties of her condition but I sure am wondering what the heck I was up for with them, you sure never appreciate things until you don't have 'em! What I would give for a "normal" pregnancy and birth anticipation!
Although, some of what is running through my head is totally normal~ things I want finished before next Friday, anxieties about how the boys' lives will change, how much longer am I going to be THIS uncomfortable, etc!
Real quick, for those of following baby Sofia--did you see that there are FOUR CDH babies in San Antonio right now? 2 were born on the same day for goodness sakes! 2 or 3 med professionals have said this to me before~ that they (CDH babies) seem to come in waves, but goodness that seems to be a lot. There were 5 at Sick Kids where Avery was. My point is this, no one ever seems to have heard about CDH (I never had, had you?) yet, the occurrence is about the same at Cystic Fibrosis (CF is 1 in 3500 and CDH varies from 1 in 2500 - 5000, depending on your source) and EVERYONE has at least heard of CF; it has a foundation, researchers dedicated to it, etc etc. I was tipped off to the CF numbers by a member of an online CDH support group, her take was the difference is too many of our babies die and I'm sad to say I think she's exactly right. Would it not make sense then to have more research, try new things, figure it out!!!! UGH, it just frustrates me.
OK, off my soap box, I'm just tired of knowing that despite it being 2006, my baby only has a 50 -60% chance of living.
Anyway, I've noticed I'm getting an enormous amount of hits lately; welcome to any new readers! I appreciate you checking in on us and your well wishes for Audrey. I've gotten some great emails this week from people I haven't seen or heard from in ages, it's great to be reconnected! I've also heard from some more expecting CDH moms, I'm sad to welcome them just because I wouldn't wish this defect on anyone, but hope our story can help them in some way. To those who continue to follow us, thank you, your support has been such a blessing! Not many of you have guessed on the great date/weight contest--are you waiting to hear what the prize will be?? (Thanks Lauren and Maureen for weighing in already!) Get your guesses out there, the prize could be a good one!
I'm going to attempt sleep again. Good thoughts to all the CDH families!
Jenn April 19 Quick UpdateNo real news--Audrey continues to look good~moving, practicing breathing, liver down, strong heart. My fluid is a little up but still under 23 and I'm 25% efaced and not dilated AT ALL!!!! That's good news as it means I will hopefully keep her in for another 2 weeks or so (that's my plan anyway!). Anyone care to start guessing her arrival date and weight? I'm set on May 2 and 8lbs 3oz.
We didn't do a weight this week. I've been having lots of cramping and a few real contractions though so he did tell me to start to limit my activity (he hasn't met Jason!) I'm going to try to milk for all it's worth though with my husband~he really has NO empathy for pregnancy; I used to laugh at my girlfriends with the husbands who are so paranoid that they don't let their wives do anything while they're preggo, now I envy them terribly!
I haven't talked to Catherine myself but Lauren did this afternoon and said that Sofie is holding her own on the oscillator, no ECMO and Catherine was doing great. Hopefully there will be an update soon as I hate to pass on 2nd hand info but I know everyone is on pins and needles waiting to hear! Just keep praying!
That's it, off to watch a movie and hang with Mr. Miller and Audrey--she goes nuts when I'm just laying around!
Talk soon,
Jenn April 18 Updates and some non-CDH weekend reportFirst, I have no real info as I haven't heard back from Catherine since 1pm, but as of then they were stopping her induction for then as she wasn't progressing AND another CDH baby was delivered and put on ECMO so both of the hospital's ECMO machines were in use. I talked to her in the middle of the decision being made, so the details were still sketchy--since she hasn't updated her site I'm not sure where they are in the process now.
Second, Jana has posted funeral arrangements for Drew as well as their choice for donations to be sent in Drew's name--this brings up a quick discussion point for me---CDH is rare and seemingly unknown and it's frustrating to me that although March of Dimes is a great generic organization for Birth Defects that CDH isn't more of a focus for research--so many babies die still even with prenatal diagnosis, why haven't the numbers gotten better?!! UGH!
Third, have you checked Jackson out lately?? He's a superstar, even starting to trial off the vent a bit. He is having some kidney trouble though so keep those prayers coming!
Also, I just want to put it out there that Jana and Lauren both have been beyond amazing to me in their biggest time of need. Who thinks of others when they just experienced every mom's worst nightmare? What lucky kiddos Avery and Drew were to be loved by such selfless women. I hope I can show an ounce of the grace and strength they did throughout their journeys when their precious ones were here and moreso if God forbid, we face the same outcome they have.
Which leads to me to a nice CDH distraction--our marathon weekend. I'm seriously trying to shift my focus off of what we are facing (to just turn it off sometimes) and although nearly impossible, I really am successful sometimes!
Ethan turned 5, AHHHH!! I didn't cry like I thought I might, but I was quite nostalgic nonetheless. His party at the firehouse was a raging success. My favorite moments were:
1. When a guest would arrive, he would greet and then say "come on we're over here" or a few got hugs even, it was way cute and so grown up!
2. He kept calling the dalmation "sparky" until I finally asked one of the firemen what the dog's name was (Dottie); apparently they were too nice to correct Ethan
3. He thanked every guest after opening their gift with a genuine thank you and smile.
4. The proud look on his face when everyone sang that changed to embarassment and ended with him under the table!
After the party we went directly to his soccer game and then came home for him to play with some of his awesome gifts and for my folks and I to finish up Audrey's nursery while Nate got ready for Crowes and Hawkins to come over for an impromptu pool party (it was 96 degrees here!). Around 5ish everyone came over to swim and eat--great fun! Now, can you say VERY TIRED pregnant woman!!!
The next morning was the Easter Bunny's gifts, followed by an egg hunt at Crowes and then Easter lunch here. We were invited to Easter dinner at the Hawkins but decided we needed to just chill by ourselves, a wise choice although we missed out on some yummy Italian fare by chef Jason!
I've posted a ton of pics of everything except Audrey's nursery as I still have a few finishing touches as well as a changing table to get in there. It really turned out sweet. I need to say a public thank you to my parents for how helpful they were this weekend with everything, we got a ton done and the boys had a blast, thanks mom and dad!
Keep our CDH families in your thoughts! Also, I've gotten some great donations for Connor's Books, thanks to those of you who have given money or books! If anyone else is still interested, please get them to me or email me for Amy's info.
Thanks everyone, your support is really what gets me through the tough days and keeps me focused on being positive! If I don't post tomorrow (doc day) remember that no news is good news for now!
Talk soon,
Jenn
PS Happy Birthday to Ethan's Aunt Nicole (same day as E's and she didn't even get a card this year, sorry!) and to Mary Hawkin's (E's best girlfriend's little sister) who turned 3 today! April 17 Sofia is Ready!Wow, what a roller coaster....Catherine just called me and she's on her way to the hospital as I type to deliver Miss Sofie! At her peri appt. this morning they discovered her amniotic fluid was WAY low (slow leak probably) and so they sent her to deliver. Catherine's been contracting lots this weekend, so they'll see when she gets to the hospital whether or not a C-section is necessary.
Please start sending them all the positive thoughts you can!! I'll update when I know more, but also check her site as another mom to a CDH angel who lives in SA will be updating too, thanks so much Karen!
Audrey is under strict orders to stay put for awhile! Sad NewsBaby Drew has passed. He fought so hard in his five weeks; please pray for the peace he and his family deserve. April 14 PLEASE! Say a prayer for Baby DrewBaby Drew is not doing well at all; his kidneys have stopped functioning and dialysis can not be done. I'm so heartbroken for this family. I want to stay hopeful, please pray for a turn around for this little guy; he's been through so much. Also, pray for peace for everyone, the stress of this can not be bearable.
Jenn April 12 Doctor DayFirst, I'd like to wish my Aunt Bette a speedy recovery...she had a double bypass last week. I hope she's resting and recovering well!
Audrey looked good again today, big and good--7lbs big!! I'm 35 weeks, 5 days, so if we go another 3 weeks that puts her at about 8lbs 8oz, but once again Dr. Rhinehart reminded me that these are generally underestimates in CDH babies, let's hope it's just right on. Although a 9 pounder would be nice as they say the bigger the better. I can just see all those premies' parents in the NICU looking at us like "what could possibly be wrong with such a big baby?!" My fluid was back up a little, but no big deal at all. I'm been REAL anxious lately about her coming soon as my dates do not match with her early sonos and I've been having Braxton Hicks again like mad (my original due date was May 3rd or 4th, the sonos say May 13 - 16), so my OB checked me today and I was not at all dilated, WOO HOO! Much relief, she will be staying put for a bit. I'm so glad I switched OB's too, today I saw one of the other docs in the practice and although I still like mine the best, this one was wonderful too and just made me feel like they are really on top of everything--knew all about me and my case and told me how they discuss me in their meetings so everyone is up to speed and ready should Dr. Brough not be on call or whatever if Audrey decides to make a surprise appearance. It was just reassuring and coupled with the two peris, I feel really taken care of.
My weekend alone was SO wonderful. I did bawl when the boys left, but was over it an hour later as I was driving to my massage appt.! The mornings and nights were lonely, but Phoebe is wonderful company and she ate up all the extra attention! I had a girl's dinner, a girl's matinee, and a fun lunch with the Fischers that ended with all of us going to witness Kaitlyn's ear piercing (big 12th birthday deal!).
Stacy and I got lots of fun stuff done for our girls' rooms too; hopefully after this weekend I'll have the complete nursery finished and will post more pictures. For those of you who have had trouble finding Audrey's bedding pics, look at the photo album box and click on the white arrow, it will give you a pull down of all the albums; choose "Audrey's nursery". Little Miss Allison and Miss Audrey are going to have some macked out girly rooms when we're all done!
The boys had a grand time in SA, too. Nate wins Dad of the Year for the drive alone, but coupled with the whole weekend on top of that, he's a superstar! Jason came back even more of a daddy's boy, but all week has been warming up to me. Little stinker didn't even hug me when they got back!
Ethan turns 5 on Saturday and I'd be lying if I said I'm not emotional about it--how do they get so big??! He's SO excited and can't believe Easter is the same weekend, what a super bonus! He was actually born on Easter, but this year his buddy in CO gets that coincidence--Happy Birthday Tyler!
We also have Kindergarten registration tomorrow (nice planning FISD, way to sock it to an already emotional pregnant mom--schedule kinder reg the same week my baby turns 5, ugh!)
Now for the CDH moms---I just heard from Lauren today and she's hanging in quite well, she's an amazing young woman~what a blessed baby Avery was to have her. My heart will always be heavy with Avery's loss, but it makes me feel a little better to know how loved she was in her short life. Keep Lauren in your thoughts please.
Jackson is doing well. Kimberly has some WAY cute pictures up right now. Yay Jackson, keep going buddy!
Drew has had some setbacks lately but will rebound soon, I feel sure. Jana recently wrote to ask what she could do for me, how sweet and selfless when she's right in the trenches right now--I'm so thankful for the women I've met through this!
And....Catherine just called me a while ago with some news; I won't leak it all as I don't think she's updated yet, but just a teaser...Sofia's arrival is now on the calendar!!!
Thanks for keeping up with us and especially for your thoughts and prayers. Loved the kind comments on last post and a special thanks to my friend Krista for the yummy package today~so thoughtful!
Talk soon, Jenn April 06 Quick UpdateHi Everyone! I so appreciate how many of you have called or emailed to check on us; we're doing fine, just heartbroken for Lauren and her family. Lauren posted that the funeral is set for Saturday; I wish I could be there for her.
Audrey is doing well; no big news from my appointments yesterday. She was practicing breathing again and moving around lots. Her heart looked more pushed over, but I think it was just the angle; it looked fine as far as size and her heartrate showed good fluctuation. My fluid is down some so that was encouraging although my breathing has been awful this week; I guess I'm just near the end and HUGE! Next week they'll check her weight again.
The boys are going to San Antonio tomorrow! Ethan is SO excited; he told his friends today probably 20 times that he's going to San Antonio tomorrow and NO girls are going--no Mommy, no Audrey, no Phoebe, JUST the boys! He was really cute though explaining that mommy's not going because she's SO pregnant and San Antonio is a long drive! I've got dinner plans both nights and Stacy and I are making some stuff for our girls' rooms one night. I'll be reading and sleeping a bunch too. I'll be waiting to hear what's going on in SA too though as I'm sure I'll feel like I'm missing out or something!
Audrey's bedding was finished this week; it's SO beautiful, perfect for the miracle baby she's going to be. I wanted to wait to post pics of the nursery til it's finished but it's so pretty, I'll post them now.
I'll also post some other fun recent ones...I can't believe spring break is so far gone already--time is going TOO fast!
Take care and please keep Lauren in your thoughts, my heart just aches for her. I probably won't post again until after my appointments next Wed.
Talk soon,
Jenn PS Thanks for the great lunch yesterday Maureen, it was GREAT to catch up! April 04 This is a sad, sad dayAvery passed last night. Please keep Lauren and her family in your thoughts. I can't quite fathom the pain they are in right now. Shine bright little Angel, you've touched us all! April 03 PRAY NOW, Avery needs it!I know most of you have checked on the babies in my links, but even if you haven't, I need you to take a minute right now and send Lauren, her family and mostly sweet baby Avery your most positive, uplifting, and strength-filled thoughts and prayers.
Thanks everyone!
Jenn April 02 Are you KIDDING me???????????3 posts in one day has to be a new record, but OMG I'm so annoyed and disappointed that I had to share....My favorite TV show just totally let me down. Greys Anatomy would have had a GREAT episode tonight if they would have accurately portrayed CDH (or used a different birth defect)--yep, almost choked when I hear '32 weeks pregnant, transferred here when sonogram diagnosed the fetus with Congenital Diaphragmatic Hernia'; Wow I was thinking, national exposure for the defect--but no, their approach?... laproscopic in-utero surgery on that day 'we just insert a balloon into the baby's trachea which will force the lungs to grow ....you'll recover at home...all will be fine, I've had lots of success with this procedure' END of medical explanation---PA LEASE! Um yeah, that procedure is RARELY done and even less so laproscopically because it's still considered EXPERIMENTAL, I could go on and on, UGH!
I know, I know, it's only a TV show, get over yourself..but man I'm annoyed; it was just such a disservice to us who are really facing the condition and from the best show on TV right now (besides Lost of course!), I'm just disappointed.
Oh and one of the other cases tonight...advanced breast cancer--chest wall mets (what Nate's mom has). 2 out of the 3 med stories directly related to us--creepy is all I'm sayin.
OK, sorry for the rant; it was still a good episode, Chris O'Donnell made his debut and he is a cutie!
I have lots of cute new pictures to add but there is some glitch right now with picture upload--look forward to pics of E painting Audrey's room, E's edible craft, Jason sleeping in the big boy bed (not that it's happening anymore
 ), and the finished pics of the boys' room. Have a good week; I probably won't post until after appts on Wed.
Jenn Connor's BooksConnor is the dear angel of my new friend Amy. His story was the first CDH story I heard. The way Amy came into my life is one of those "someone else has a plan for you" kind of stories. You can read all about Connor and his family from their site (see links).
On May 15th (Connor's birthday), his family gathers and presents Scottish Rite Children's Hospital here in Dallas with books donated in Connor's name. Last year they were just shy of 750 books! What a gracious tribute to their son and joyful way to celebrate his short life.
Audrey will be donating books and I'd like to invite you to do the same. If you'd like to send a check to the family instead, they will buy books with it for you. Please email me if you're interested and I'll send you Amy's address. If you're local, I'll be glad to take books/money for you and pass them on. Books for all ages are needed.
Thanks!
Jenn
Cautiously Optimistic.....I'm SO tired of that phrase, ugh! We saw 3 docs on Wed (2 perinatologists and a neonatologist) and all 3 used it. Um yeah, we get that Audrey might not make it out of the delivery room and if she does, she may not leave the NICU, we're not going to hold you responsible, can you just tell us she looks great without the "but"!!!! I REALLY like all three men too, I'm just sick of being told we may not have a "favorable outcome", it gets old especially when just before they say that, they talk about all the positive things she has going for her.
I think that's why I haven't posted this week, I've been a little "over it"--done thinking about it, done stressing out about it, done being huge and uncomfortable, just done, because honestly, sometimes it really is too much.
All the other babies are improving some now, and I think that has brought me back up. Haven't heard from Lauren for a few days, but I'm hoping Avery is getting stronger.
We really did have a good week too and Audrey's sono on Wed was fun--they tried to do an NST again (non-stress test); 3 nurses/techs tried to get the doppler and strap set to monitor her heart rate and the little stinker would move everytime they thought they had it; finally a PA came in to try and she eventually gave up too; no one could believe how much my tummy showed her moving, she's a crazy one! Then, I had 2 Level 2's and Nate got there in time for 1/2 the first and all of the second. Lots of "air time" for the crazy girl--she has LOTS of hair, looks over an inch long; she was practicing breathing a lot, her liver appears completely down still, and she weighed in at 5 lbs 11oz! We got some great shots of her face too and she really does look like Jason--same lips and nose!
The Neo meeting went fine, we feel good about the care she'll receive at PHD (Presbyterian Hospital of Dallas); Nate had a little different perspective though--he was done after 15 minutes, feels like we were just hearing the same stuff we already know; I think he thought we were just going for a "meet and greet"; every doc wants to give their comprehensive plan though and I think, feel out what we know/how prepared we are, etc. He liked the doc, but didn't like hearing stuff over that we already know (his take on the whole thing is actually pretty comical--imagine that!)
The Peri appt was great, we both love both the docs there. I did end up switching OB's on Tuesday too--who does that at 33 weeks? I feel good about it, but can't help but second-guess myself. Not much else to add; we did run into a brick wall on supplemental insurance though--if anyone who's company offers AFLAC wants to hire me to do something from home for the next month so I can get it, that'd be great! Just kidding, we just need to be thankful for the medical insurance we do have--Microsoft really is the BEST company to work for. Who knew when Nate took this job last June it had more purpose than just his career.
Nathan is going to take the boys to San Antonio next weekend (if my appts this week show no signs of labor--they shouldn't!!) for his mom's birthday and our niece Carolyn's FIRST birthday--that first year goes SO fast! I get the whole house to myself for a whole weekend, I'm a little giddy about it! I know by Sat afternoon I'll be lonely and feel like I'm missing out but I also know the rest will do me good.
Take care everyone and please remember the babies fighting right now, they've all had repair surgery and need to gain strength to start weaning from vent support, it's a LONG road and every prayer helps.
Talk soon,
Jenn
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