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March 26 Blog or Clean?Ethan is watching a movie and Jason is napping--should I take advantage and clean my nasty house or post an update? I did start the dishwasher first, so here I am!
First, Miss Avery had quite a repair surgery Friday--I haven't talked to Lauren but from the blog it sounds like she had a rough time after, please keep her and all other babies in your thoughts. I'm hoping to hear soon that Avery has rebounded and is back to growing that left lung and pushing the vent stats back down!
Ethan is watching a movie right now instead of enjoying the gorgeous weather because after soccer yesterday (where he scored an awesome goal) he started looking a little pale--sure enough 104.1 and puking! (which is part of the reason I don't feel like cleaning anymore as I had that extra laundry and carpet to do yesterday) Poor guy was pathetic most of yesterday but perked up around dinner and after only to wake up around 3 and stayed up until 4:30ish when he finally got sick again and then went back to sleep, UGH! No fever though since late afternoon yesterday, so hopefully he's on the mend---Jason went to the doc last week with low grade fever and ears but no infection thank goodness! I swear we only go a week or so healthy around here. If Jason gets this next bug, UGH is all I'm sayin'! Cute story about the bed transition though--he hasn't been doing so well with stayin in at bedtime (we don't even try at nap) so after 3 escapes we put him in the pack-n-play (a few times that's been motivation for him to then stay in the bed after, but generally not); 1 night this week though when he was sick, he woke up around 10ish with a 103.5 fever; we were watching TV so we were just going to hold him until it broke. After about 25 minutes or so, he started to perk up and wanted down (we thought we were in trouble--ready to play or something) but bless his heart, he gets down and says "nignt, night, big boy bed" and toddles off to his room, gets in bed and goes to sleep. Cutest, sweetest thing ever.
OK, I'm rambling, sorry! News--my appts on Friday were much better than the one last week. I like the new peri; seems very similiar to the one I was going to in Plano (they are partners, just different locations) and he seemed quite optimistic after seeing Audrey, which is always nice to hear. My fluid is steady, a little down (22.9) but he said that actually qualifies as the same with the margin of error on measurements. I did see my reports this week though and my fluid had been consistently around 8.5--he said no worries though. He didn't give me a weight this week, said they will only do it every other for consistency (last week she was 4lbs 7 oz); and it still looked like liver was down---my favorite part though----Audrey has hair!! It was enough to see wisping by her ears so I'm guessing a full head like her brothers had! It was so sweet to see. She was as crazy as ever in there too!
My OB appt was fine, but he didn't really have the answer I was looking for about his vacation right at delivery time so I'm going to see someone new on Tuesday and see how I feel. I'm seeing the doc that delivered Connor (see links) and his sisters as well as another friend who's twins had Twin to twin transfusion. We also have our meeting with the Neonatologists (Audrey's doctors in the NICU) on Wed; so with those along with my peri on Wed, we should have our fill of hospital visits this week! If any of you CDH moms who read this have ideas for questions we should ask the neos on Wed, please comment or email; I want to get the most of of this meeting!
Huge progress on my to-do list---biggest news... I think we have a pretty set plan in place for the boys' care while Audrey's in the hospital!!! My folks have cleared their May so that they can both be here for the first week and then one of them will stay or they will switch off the rest of the month. Nate will take paternity leave for those first 4 weeks too. The rest of the summer is semi planned (enough so I feel good about it) as well! I can't tell you what a relief this is. My parents rule! Thanks to all of you who have volunteered to help out on an as-needed basis too; we will definately be taking you up that and be forever grateful!
We also found a supplemental insurance policy that we hope will help a bit with the extra expenses--we've been a little nervous about the incidentals like gas (takes about 40 minutes one way to the hospital), food, babysitting, etc that we'll incur with a long NICU stay.
The boys room is nearly done; E's birthday stuff only has a few more tweaks, and the nursery is definately on it's way--painting was finished this week; I have the best story about that too that I will close with...
Ethan has been SO great about giving up his room for Audrey. He had helped with the primer step in painting but the colors were done at night while the boys were sleeping, pink one night and green the next. He didn't have too much to say about the pink (tape was still up, could still see primer, etc) BUT the morning after it was finished I woke up to the sweetest, softest tap and his gorgeous smile as big as Dallas--he hugged me real tight and says "I just LOVE the pink and green" and then got in bed with me and we snuggled talking about how sweet it looked and that baby Audrey would just love it. It was SUCH a great moment!
I guess I'll get a little cleaning in after all. Have a great week, pray for those babies! Thanks for following my ever increasing in length posts--Nate continues to be horrified ever time he sees one and thinks you're all either nuts or too nice to keep reading them. He told me yesterday that the length is the reason no one comments--I said it's because I get so many nice emails!
Have a good week!
Jenn March 23 Avery's Repair Surgery is tomorrowPlease keep Lauren and Avery in your thoughts, it's a BIG day! Getting these kiddos to surgery is the first hurdle and the second is the surgery/recovery--so far Avery's been such a champ, I just know tomorrow will go super smooth too!
Jackson and Drew are working hard to get off ECMO, they're looking really good, check out the new pics of Jackson from yesterday, what cuties!
I had my third and final fetal echocardiogram yesterday--no news is good news! Audrey's heart is pushed even further over to the right but the compression is still classified as mild and NO structual defects can be seen. Her heart will still be a major concern after birth but at least we're pretty confident it has a strong fighting chance!
I go tomorrow to my weekly Peri and OB appointments; they're not til late afternoon though so unless there's some big news, I won't post until this weekend sometime.
Take care everyone and thanks so much for your continued support and care; I just know it's going to make the difference for our precious girl!
Jenn
March 21 I can't believe I haven't blogged about....Avery's arrival!!!! I'm sure most of you have checked her site, but in case you haven't, she's here and doing AMAZINGLY well! I've been so wrapped up in following her and everyone else's blogs and keeping up with the emails between us mom's that I just haven't written here, sorry!
Just Catherine and I are left to deliver; although just today I got an email on my yahoo support group from a mom in PA who was just diagnosed, that's such a hard time, please send a thought her way!
Baby Jackson had a rough weekend but is doing MUCH better now. I heard from Baby Drew's mom too and have posted his site in my links--he's REALLY improved and will probably come off ECMO soon and have his repair surgery!
I've been doing great--big and tired, but good nonetheless. I didn't post after Friday's appt though beause it was an emotional nightmare--Audrey and I are fine, it was just some very insensitive front desk people (asking me why would I need to have an L2 weekly, "what's WRONG with your baby--I can't read the doc's writing, please spell that, I've never heard of THAT!", capped off with the realization that my new OB is on vacation the week he planned on inducing--NICE, huh?!) Notice I said "people" too, it was 2 VERY insensitive front deskers (OB's and Peri's--what are the chances?) and then when I turned around and went back because I was freaking out about the vacation thing, my nurse was standing there and says, "oh, I'm so glad you came back in, I was just looking at this order and have no idea what he wrote, what is your baby's condition? can you spell it for me? can they even fix THAT?!" "no, you can't go back and talk to him now, he's late for surgery and I still have 5 people waiting"---UGH!!!!!!!! Needless to say I spent a good portion of the drive home in tears! I go back next Friday and will either figure out the vacation thing OR switch OB's again; I already started the phone calls.
Anyway! Lots going on at the Miller household--the nursery is officially on it's way--Nate has been painting for 3 nights now (12 ft ceilings and of course I'm not just doing a simple color--it's stripes in 3 colors) and only has one last thing tonight. Pink is a weird color to see in our house!! Ethan helped a lot with the primer coats, it was so sweet seeing the "boys" doing a project together and E was SO proud.
Jason has slept in the "big boy bed" 3 nights now--the pack-n-play is in there too as back up and has had to be used but I see a light at the end of the transition tunnel!! So cute too is that Phoebe goes to bed with the boys now--she starts out under the beds but has ended up in bed with Jason the last 2 nights. He thinks it's the coolest thing when he wakes up and sees her. I'm going to try to take pictures tonight, it's really sweet! She's ALWAYS slept in her own bed next to ours (sometimes in ours!) so it's strange that she's chosen now to start sleeping with the boys--we've tried several times with Ethan and she always wants back in with us. I think she knew we needed her help with this or something!
I'm going to the ped cardiologist tomorrow for a follow-up echo cardiogram; hopefully no news will come from that. I'll post again after my peri and OB appts on Friday.
Thanks for checking on us; I really think everyone's thoughts and prayers are what's making a difference for the babies alreay here and will ensure Sofia and Audrey make it too!
Talk soon,
Jenn
PS I forgot to mention--Jaxton (savebabyjax.com) has been having some big reflux issues, had to have all sorts of not-so-fun tests the past 2 days (sedated and intubated for the CT yesterday); he's doing great but send some love to the Smith's! They are going to Houston for his follow-up and to talk about these new things this week so I'm sure she'll update when she gets back.
March 16 Awesome Preggo NightSo what could be better for a pregnant girl than getting a pedicure and a huge carmel/hot fudge/pecan sundae with her best friend sans kiddos? That same night without one of the nail techs gasping AND laughing at how big your belly is!! Stacy was so shocked that through her own laughter she says, "I think you really just got laughed at!" yeah, I know, thanks. This was of course after I already got, "that's a boy right, so far out like that?!" I swear!
The evening was fun though and definately what I needed after a 2 playdate day on top of a peri appt.
Before I get to that---anyone check Lauren's site? No Avery yet, she got sent home. She went for a mani/pedi today too after that!
My appt was fine; my fluid is up--23.6 (12 is normal; 8 - 18 is the acceptable range; 25 is polyhydramnios) but the Dr. wasn't too concerned especially since I'll be going weekly now for a Level 2 so we'll just monitor it. If the OB is more concerned tomorrow, I'll spend a little time explaining why polyhydramnios is a concern; otherwise just know it's a common thing with CDH pregnancies.
Audrey was as cute as ever and definately showing off for her big brother; she winked several times, waved, and swallowed---Ethan REALLY enjoyed it; walking out he said, "mommy, I want to come every single time". She measured 4 lbs 7 oz--I don't know if I mentioned this before, so forgive me if I did--just like in a normal pregnancy, the weight is just a guestimate based on certain measurements of the baby (one major one being the abdomen), however, in a CDH baby, the abdomen is concave due to very little being in it so instead of the weight "guess" probably being more than she is (like in a normal baby), it's probably less than she really is--So, I think I'm growing a big one!!
I was on the NST monitor before my sono and he liked that a lot too as he was very helpful in watching the numbers/listening to her heartbeat and watching for my belly to move--exclaiming whenever I pushed the button (to indicate feeling her move) "I saw that one, mommy!!" Whenever she moved enough for us to lose her heartbeat, he'd crack up and say "that crazy baby just won't stay still, find her again" it was pretty cute. Needless to say, I'm not sure we got much out of that paper as she was such a stinker about staying on the monitor, I guess we'll see if we get more consistent results next week. A little 4 year old perspective though--when the doc came in and we did intros, Dr. asks him if he's excited about his baby sister and Ethan replies, "yeah, but did you know my friend Cole has a corvette? It's REALLY cool and we drove it A LOT yesterday!" Ah, to be 4! (Cole's corvette is one of those cooly 2-seater ride-ons) We're going to start talking to him soon about how this is going to be a lot different than when J was born, his "ride along" today was to have a segeway to that conversation.
Her liver still appears down; although the doc didn't say it with the same confidence he usually does and it was snug against her diaphragm (looked totally under to me, but it was right up against it). I am a little paranoid now though since Baby D was diagnosed as liver down the entire pregnancy only to be born with part of it up. I went back to my MRI results tonight though and her liver was clearly down. You can totally see left lung in the MRI too--today on the sono we couldn't find any (LOTS of bowel and colon were in front of it though). I felt much better after reassuring myself with that.
Like I said, I'll post if I learn anything new tomorrow at the OB; for now Miss Audrey is as crazy as ever, kicking right now as a matter of fact!
Have a great St. Paddy's day!!
Jenn March 15 Happy Birthday Phoebe!!!Ten years old today!!!!
I'm sure not everyone celebrates their dog's birthday, and honestly this is the first time we've had an actual celebration with cake and everything but she's 10, that's HUGE for a bulldog (they have a pitiful life span of 8 -10 years). I wanted to share her whole life in pictures, but sleep is just more important so all ya get is the party pics!
The other pics are of our week so far, the Jason and Jackson lunch pics kill me, how did they get so big ??!!(for those of you who don't know, Jackson is Stacy's son; he's 7 months older than J and like a nephew to me)
Anyway, that's it--I'll post a real entry after the doc appts (I have 1 tomorrow and 1 Friday). E is going along tomorrow to see baby Audrey, he's pretty stoked.
Lauren goes in early tomorrow morning; please keep her and Avery on your mind! Jackson is doing GREAT--first trial off ECMO was today and Kim emailed that it went well, he may be off by the end of the week, ahhhhhh!!! Baby D is stable. Catherine is recovering from a nasty cold-like thing (poor thing was hospitalized but is home now), send her some healthy thoughts!!
Talk soon,
J March 13 Prayer RequestHi Everyone,
I'm not going to write much today as I will update on Audrey after my appts on Thursday and Friday, but I wanted to quickly let you know that 2 babies are here and Avery will be here by the end of week. PLEASE think of them and their families tonight and wish for them strength and healing. For Lauren and Avery wish them an easy delivery too!
Also, making lots of strides on my list--going public with it clearly helped!! It's Spring Break this week, lots of crazy fun here; will post some pictures with the next entry.
Talk soon, Jenn March 08 Feeling much better!Thanks everyone who emailed with such kind thoughts and encouragment, I appreciate it! Lauren even let me off the hook in her latest blog entry--she's such a superstar...4 days from due date and just chatting about all of us! Hang in there sister, Miss Avery will make her appearance when she's ready!
Let me start with the other baby I mentioned yesterday, I still haven't heard anything. I'm so hoping to hear soon!! Please pray for Baby D, his family and of course Kimberly, Adam, and baby Jackson.
Today both boys had school and although I had a committment I decided to cancel and try to start working on my list--made me feel so good to get something accomplished! Audrey's nursery is getting off the ground, can't wait to share the finished product (although she may be missing a crib as I just don't see Jason getting out!!) It's going to be so sweet, all pastel pink and green.
Any suggestions on making this bunkbed transition smoother would be greatly appreciated. The problems are that he wants to climb up with Ethan, won't stay in his bed and can open the door (even with door knob cover) all this coupled with not sleeping well in the crib either (new awake time is 5:45ish) and we are just about done with trying--ic he may be sleeping in Audrey's room in the crib (so he's not messing with E anymore) All of Ethan's issues, however, have seemed to fade. His stuff isn't even the room yet and he's totally okay about it. We're still having some light issues (E wants some, J is used to none) but I think we've finally solved those too.
Alrighty, I'm rambling and Audrey just kicked the laptop for the third time; I better go to bed--getting more rest at night should have been 2nd on the list!
Thanks again for your kind words and please spend a minute or so thinking about the other moms.
Talk soon,
Jenn
March 07 Baby Jackson is Here!!Kimberly and Adam (see links) welcomed Jackson Sunday afternoon. He was stable through night, went on ECMO Monday and now continues to remain stable! They have pictures posted on their site, he's a cutie! Please say some prayers for him and his family; the next phase of their journey has begun!
Another mom is being induced tonight in Oklahoma. I've never gotten permission from her to share more about them, but please keep them in your thoughts too.
Our group of 5 preggos is dwindling fast as Lauren is due in 6 days, next Catherine in San Antonio is due in April, then Audrey!
I've been pretty anxious lately; I think it's a combination of these babies arriving, me realizing I only have 8 weeks or so left myself, and the crazy tiredness that being 30 weeks pregnant chasing a 20 month-old (who shows no hope in leaving the crib)brings. Not to mention the hormones are a whole new ball game being pregnant with a girl; I'm sure some of it is stress but my body is WAY different than it was with the boys so I'm pretty confident some of it is physical too. I just posted my list of big things that need to get done in those 8 weeks; I'm hoping that making it public I'll actually get in gear on getting them done!
As a result of everything mentioned above, I haven't been very fun to be around--yesterday my friend Sharon asked me how I was feeling and instead of just saying fine or tired, I totally ranted and when she tried to be positive about the excitement of Audrey's birth getting closer, I came back with "she's safe inside me, outside she may not live"; GOODNESS, poor thing will never ask me again! Sorry Sharon, it was just the end of a long day. Nathan told me today I'm just not nice, I think he's right. I'm really going to try to work on it; hopefully crossing some things off that list will help along with these babies being born and doing well.
I'm going to post some recent pics--a few belly shots Nate took in Santa Fe, some fun ones of our trip to the Fort Worth Zoo last Sunday, and then a few tacky/funny ones--a belly shot of me wearing one of my dad's T-shirts and some future blackmail shots of Jason doing what he does best (getting into things) Can you imagine how horrified a 15 year old boy would be to see those?!! Enjoy!
Talk soon,
Jenn March 02 Real quick updateHi Everyone! Don't have much time or energy but wanted to let you know how the new OB (Dr. Chapman) meeting went--I like him a lot and feel really good about him delivering Audrey. I'll start weekly visits March 16th (not excited about that) and switch to my peri's partners at Dallas Presby at that time too (just for convenience--the office/hospital is a good 35 minute drive without traffic and if I need to go there anyway, why break it up with a stop at Plano Presby first when Chapman and the peri are just down the hall from eachother).
We talked a lot about my due date (it's been a little blurry because her growth wasn't matching my dates) and after pouring over the sono indicators he decided to go with May 11 - 13 which makes me 30 weeks on Sat; if all goes well between now and 37 weeks, we'll do a amnio then to check the maturity of the lung she has and then plan on inducing (if they are no indications of a C-section being safer for her) around 9 days early which would be the first week of May (Ethan came 7 days early and Jason came 8). He was totally fine with a vaginal delivery as long as we shoot for daytime when everyone is assured to be there. Said if anyone is a good candidate it's me (good birthing hips and all--JUST KIDDING--my history is what makes me one!) Hello--that means she will be here in 8 weeks, AGH!!!!!!!!!!! I'm so not ready! I guess that how it goes.
I'll write more later, just wanted to get the doc visit out. Thanks for checking on us and please remember babies Jackson, Avery, and 2 others I haven't gotten permision yet to name!
Talk soon,
Jenn |
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