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May 31 Cruisin'Things are going GREAT! I'll give more details later but wanted to give a quick update. Daddy held her today!
Love to all,
Jenn May 29 New CribNo more warming bed and if she keeps up with her feedings, her central line will be gone sometime tomorrow! Nathan spent the morning with her and although he didn't hold her, he did get lots of awake time. She was alert and following things with her eyes for the longest span yet. I'm headed down later this afternoon and can't wait to see her new digs and alertness!
She's making such strides, we just couldn't be more proud! Her next hurdle will be learning how to eat, if this week goes well she may start oral intros as soon as Friday. It will depend on how she tolerates increased volume of food and more so on her respitory rate which right now is pretty high (normal for a baby with such a little lung). Reflux, of course, is another issue that we'll keep a close eye on--so far she's only had a few mild indications of it, but, those will most likely increase with increased volume of feeds, we'll just see! Right now we're just over the moon at the progress she's made in such a short time. We are finally off life support measures along with all meds and she's doing great; we couldn't be more thankful.
Speaking of thanks--what a contribution all of you have made. I know that my precious girl has a will to match no other. But, I also know that the power of everyone coming together for her has carried that will to the greatness she has and will continue to achieve. Your support has lifted us up. The comments on here alone bring us such peace and joy and I can't even begin to list the amazing things people have done for us in the past month. Please know how beyond touched we are. The journey continues but I feel like we've definately turned corner in the path!
Please continue to pray for the other CDH families. I have so much I want to say (imagine that?!) but will save it for another time...Jason will be awake soon and I need to pump. To my CDH friends, please know I think about each of you daily.
One last thing...a special public thanks to my parents for helping us with the boys. We've been on our own this weekend and although doing fine, there's NO WAY we could have handled this without them. Mom, I can't wait to see you tomorrow!!
Love,
Jenn
PS Happy Birthday Caprice!! Hope your day is special!
May 28 A Pictureis worth a thousand words. Enjoy the pics (album "Held at last"), I'll write when I have a minute.
One word summary: AMAZING!
Love,
Jenn May 27 Audrey 2.0Not much to share except...
SHE'S EXTUBATED!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
She's totally holding her own on just a nasal canula with O2 between 30 and 35% She's also off of Fentanyl and TPN (IV nutrition) Oh yeah, you heard me right. Apparently Miss AJ doesn't want to follow any rules so she's ditching everything in order to get herself home! Don't get too excited, we are a LONG way from there, but she's definately on the right road.
I'm too tired right now to share all the details of how she managed to shock us all today by basically asking to be extubated but I will in the next few days. Her doc assures that she may still need to be reintubated and not to feel discouraged if it happens, but she's been off the vent since 12:20 this afternoon and doing fine. He said once we're 5 days out from the vent to feel pretty confident but to be "cautiously optimistic" (LOVE that term, remember?!) until then. Her only issue right now is that her blood pressure is a little high, but not dangerously high by any means so we're just watching it.
I've got so much to share about hanging out with her today but we're off the bed. Remember how we thought the house was quiet? I'll just say that it's not anymore! We didn't get great pics today as she was on her tummy most of the day but you can still see how gorgeous she is without the tube, enjoy!
Love,
Jenn May 26 Boys are coming home!It's been TOO quiet around here! Nate and I just couldn't wait until Saturday so Nate is headed to meet my mom half way to get them in the morning. When I spoke to E tonight and told him that he'd see us soon his first question was, "is Audrey gonna be home too?" It's to tough telling him no and more so that he can't see her yet.
She had a good day, no problems with the new vent and she's at solid settings on it-- 23/6 with a rate of 35 on 28 - 31% O2--(for those of you who know the numbers).
She had a few real hard times though getting settled after touch times though. She's still coughing a bunch too,which means getting suctioned a bunch. While you can tell she benefits from the suctioning, it's horrifying to watch her struggle when it's being done. I thought suctioning the boys with a bulb syringe was painful to witness before this! Poor peanut. She also started breathing treatments today and respitory treatments to help clear her lungs of the secretions she's producing.
I think the drug withdrawl is the hardest on her right now as well as the fact that she's VERY positional--if she's not "comfy", nothing will help until she is--today she got 2 different sedatives to try to calm her but she was on laying on her left side and wasn't happy until we changed her to her right! It's SO hard to watch her clearly unhappy and not just be able to pick her up and fix it. Today when we finally got her comfy she just laid there staring at me with this look on her face that said, "it's about time you figured it out!" She then fell asleep for over 4 hours. With the 2 punch of sedatives she should have been out way before that, but she knew what she wanted and sedatives wasn't it. It just took us awhile to try her right side as we had tried EVERYTHING else including moving her to her back (apparently that wasn't enough of a move!)
She clearly has a strong will and I couldn't be more thankful for it as I know it has helped get her to where she is. I sure love my crazy girl! And, I get my boys back tomorrow, couldn't be more excited to see them!!
Please continue to send Miss Princess-Fru-Fru hat calming thoughts, she really needs them. Also, I have a announcment...our dear friend Mo had her baby boy on Tuesday! Congratulations Pearson Family!! We're so happy Teige and mommy are doing well, we can't wait to meet him.
Have a great weekend everyone!
Love,
Jenn
May 24 Third time clotWell we had our third PAL line clot today. The shame of it is we were almost done with it. Because we changed vents today they wanted to have it available. So they are trying to replace it now. If they can't it will mean she wil get heel sticks for the remaining gas checks. The good side of it is we were almost done and that is the line that needs to be removed before we can hold her. We'll see. Conventional ventWe came in today to see a conventional vent. Last night she was getting really bothered by the High freq so they decided to switch her out this morning. So far she has been much better on the conventional vent. As soon as they get a second air gas the will take the high freq out of the room. They tried her on room O2 setting 21% she wasn't able to go that low but she is at 28% and at a Ppeak/peep of 25/7 setting on the vent. Lowest Vent Settings!Today Miss Superstar was able to maintain her lowest settings ever! We may see the conventional vent before Friday.
She was REALLY aggitated today too though which is beyond miserable to see. It could be the removal of her sedative drip, the weaning of her pain narcotic, the increase in her feeds, or just gas/position, etc. She still gets a sedative and pain meds but just not a continuous drip. During the day we were able to calm her with a change in position or diaper, talking to her, etc and only had to give her meds three times, but tonight she had already had 3 doses before 11pm. That's not necessarily bad as she's not requiring more than allowed, but it still worries me. Little peanut was just clearly not happy. Her sats, HR, and BP all recover fine though once she gets calm. It doesn't make it any easier to watch though.
Please send her some calm, serene thoughts. She needs 'em!
Also, Baby Jolee was put on ECMO today after "honeymooning" for her first 4 days, please pray it gives her heart and lungs the rest they need so she'll be strong enough to get better. Audrey only "honeymooned" for less than 6 hours and I know how devasted we were when that ended, I can't imagine hanging so tough for 4 days and then facing tough times after thinking you were good. Please pray for strength for Krista, Joe and the rest of their family. The next high of the roller coaster will be just around the bend, I promise, just hang in there!
That's it for tonight, I'm off to bed to dream about my pretty girl without any pain or tubes--dreams can come true you know!
Love,
Jenn
PS Nate's RUDE San Antonio comment does NOT reflect the feeling of the whole Miller household (just his fondness for the Mavs and Mark Cuban). I was rooting for the Spurs in last night's game! Yvonne, you were WAY to nice to Mr. Miller in your comment!! May 23 UpdateAs the Mavs prepare for the next round of the playoffs and San Antonio heads back to the Muddy River City things continue to go well here. I don't think they will switch out her vent today, but we are getting close. They just removed the line in her belly button and they are taking the Fentanyl down very slowly (.1 every 24 hours). May 22 25% Oxygen!A new low (a good low!). Almost all of her vent settings are at record lows too so she may even switch to a conventional ventilator soon! The conventional vent is much more natural and she can breath with or over it and not be distressed as she is by the HFOV (High Frequency Oscillatory Ventilation).
Her progress is SO way exciting, but nerve-wracking as well...how is she going to do? what are the signs we need to look for on this new med/machine/amount of food/etc etc? We're working on eliminating some of her pain/sedation meds as drips, decreasing her steriod, and decreasing her TPN (IV nutrition). She had a new sedative drug today as a bolus (injected instead of continuos drip) and she really did great with it (we think she's developed such a tolerance to the others that their effectiveness is waning without increasing them). We're hoping to get off of Fentanyl without using methodone but it's been added to the orders if she has a hard time. We've decided to look at it like this...we'd rather she has a medically necessary drug problem now than a self-induced one later!
With her waking up, I've had a real hard time with seeing her so reactive. Watching her "cry" (no noise, just a contorted, red, sad face with elevated HR and BP) is gut wrenching for me. She is "coughing" some too which is horrifying to watch. These don't happen often but they're really hard for me. The coughing may be indicative of reflux so we're watching that closely. She spit up for the first time last night too, but hasn't since. She's "eating" well though as her outputs are healthy (that's a nice way to say she's pooping well!) We'll continue to watch her closely for reflux as her feeds continue to increase. She's currently doing 6cc/hr (very little as her eventual goal will be 25cc/hr and we only increase every 12 hrs).
Today was better for me as I was able to comfort her a little instead of "exciting" her but it's still so hard to not be able to pick her up and make everything okay. Seeing her calm and awake though is SO wonderful; she's such a gift.
I have lots more I'd love to share but will save it for another time. Please continue to pray for all the CDH families.
Thanks for keeping up with us, we're SO thankful for your support and have been beyond touched by y'all's words and actions. Who knew a precious little girl could could have such a big spirit?! Go Audrey, we're so proud to be your parents!
Love,
Jenn May 21 UpdateThey compared her numbers to ones earlier in the week and they were the same, her fever is also down so it doesn't look like she has an infection. NervousI just called for a 5am update and little Miss Audrey is doing fine (even took a few turn-downs on her vent settings) but she has a slight fever and some elevations on her blood count--all indications of infection. We'll talk to the doctor later but her nurse said they will most likely just put her on antibiotics and see. UGH! We were just talking tonight about how the only thing that will slow her down is infection. Please let her fight it quickly and without incident, she's gone through so much already.
I'll update later either from up there or when we get home.
Talk soon,
Jenn
PS a new CDH baby was born the 17th and is hanging tough; please add them to your thoughts and prayers, her name is Jolee May 20 She's awake!Eyes open! I wasn't there for the first time, but her nurse and JN (my contact there from the beginning) were and they got the camera and got a picture for us! It was hanging on her bed when we got there. As soon as we started talking she started moving and then peeked one eye open! I was bawling of course as I just couldn't believe it and was beyond joy. What an amazing little girl we have, she's come so far in just two weeks. She continued to stay awake for a bit and then went back to resting. Nate and I were beside ourselves with excitement.
Nitric is gone, we have a whole lot more room in her "room" without that machine and her pre/post oximeter monitors are gone too! She just has one oximeter and its reading is displayed on her big monitor now where her BP and HR are displayed. We're getting all sorts of acerage in there now!
She's at 30% O2!!! Her feeds have been increased to 3ML/hr. Some of you have asked about that--she's getting breastmilk through an NG (nasal gastric) tube--a tube in her nose that goes to her stomach. They check her residuals (what's left in her stomach) every 4 hrs and so far, she's digesting well. Her urine output is good (today on the diuretic is was WAY good) and she is having tiny BM's (I changed my first one tonight!--who knew that statement would ever get an exclamation point). Those will need to increase, but I'm sure she'll do it!
The best news how well she's doing with these changes--she is consistently sating in the high 90's, and her BP and HR are solid --even when you touch her and talk to her. She's been REAL touchy lately (any stimulation resulted in a desat that took an hour or so to recover from) but not today!
I just called in fact and KJ (one of our many favorite nurses) said she had just moved her to her side, weighed her (a little over 11lbs--lots of fluid still in her) and she was still sating 96. She said Audrey had both eyes open most of the time too and she took some pics with the disposable camera we leave up there. Hopefully we'll get some for y'all to see tomorrow. She was only opening one eye for us tonight and stopped as soon as we got the camera out.
I feel like I'm rambling, I'm just excited about her progress. The plan now is to continue to see how she does with being awake and then to start weaning the vent support. Her next step will be a conventional vent (days or weeks before that will happen) We will also start weaning the sedatives some too. She only came off the paralytic today, haven't touched the sedatives but she hasn't had any extra doses either (first time in many days). She still has several drips (nutrition, electrolytes, and saline to keep lines open, as well as both of her sedatives) so we have lots more progress to make, but wow it feels great to have come this far!
The boys are great, J is apparently sleeping in the BBB at Grandma and Papa's. I did have a big 'ol cry after they pulled out of the driveway, but I know getting to spend some good time with Audrey and Nathan without being torn about spending time the boys will net lots o good.
Sleep well my friends, I will! My dreams will be filled with visions of my gorgeous Audrey with one eye open, tomorrow I'll see two!
Love,
Jenn Quick UpdateI'm still home as Nate doesn't trust me to not touch her but at noon I will have been on antibiotics for 24hrs so I may go up this afternoon or evening. I feel much better but don't want to take any risks.
The boys are headed to San Antonio today after E gets out of school; it will be good for Nate and I to rest and not feel so torn between home and the hospital but both of us will be quite sad without them too. My dad could use some time at home I'm sure too and the boys will get to spend some time with Nate's family. A great set up for everyone but I'll still be bawling when they're pulling out of the driveway.
Audrey continues to do well; she's down to .6 on the NO and hanging at 43 O2. It looks like she'll be off Nitric by this afternoon! Of course now that I wrote that, we'll see! She's "eating" well too--3cc/hr through a NG tube. They check her tummy and of course her diapers to monitor that as well as her lung x-ray to be sure she's not aspirating anything. We were going to try to get off the paralytic this morning but she breathes so much over the vent that it's counter productive and she hovers in the high 80's then too so he decided to back off on that until she's off of Nitric. I can't say I'm sad about that as I was having visions of her opening her eyes and mom not being there. Her eyes are still pretty swollen though so it probably wouldn't have happened. Anyway, she's back on diuretics too so the swelling should decrease soon as well.
Got to get to playing with Jason!
Thanks for checking in!
Jenn May 18 Good news/Annoying newsI can't say bad news because with the night Miss Audrey had, nothing can be bad today....she got down to 28% O2 still sating mid to high 90's!! GO SUPERSTAR!
I, however, woke up without a voice and a nasty sinus infection to go with it (annoying news). Needless to say, I haven't gotten to see her today which is a total bummer. I wouldn't risk infection for anything though so Nate got up there pretty early and hung out with her.
The plan was to see how much reserve Audrey could build and then start to wean her off the Nitric Oxide. For perspective, her highest was 30 (10 points higher than recomended--a call was even put in to the manufacturer at one point because being up that high the machine started reading incorrect numbers, no bueno); she's been below 20 for quite some time and at 5 since Saturday. She seems to have trouble getting below 5, but today has managed to do it AND stay low on O2, right now she's at 2 Nitric and 35% O2, and still sating low 90's!
The wean to 0 will be slower but we will hopefully be able to be rid of the Nitric machine by Saturday!!! This process of course may mean some bumps between now and then as she reacts so the next 24 hours may be a bit tough, but I feel great about it going in and I feel like she's ready.
Hopefully my antibiotics will start to help soon so I can be up there tomorrow. It's killing me to not see her. I feel really yucky too not to mention how ridiculous I sound!
That's the latest!
Check out Mr. Jackson if you haven't lately; both he and Sofia continue to amaze me.
Talk soon,
Jenn May 17 Catching UpAlrighty, I know last night’s post was a long one, but it wasn’t much more than a pity party, and I have lots of good stories to share from our CRAZY life.
Let me start with Ethan…after our date (movie and dinner Sat night) we stopped at the grocery store and while loading the car he comes out with, "why did you let me get so many good kid foods (scooby mac and cheese, the expensive juice boxes, batman soup, etc)" um hello, you don't call your mom out when she's spoiling you, punk!! Poor kid is so used to "sorry honey it's not on the list" or "we don't have a coupon for that" that he knows something is up when we just put it in the cart! A sweet one…we were opening gifts for Audrey and he gets this pathetic look on his face and says, "I didn't get her anything yet"; we assured him that his gift (the art work) was the first she received and he felt much better. Finally, Ethan "graduated" from Preschool last night. It was quite a production and after we headed to Sonic with his 2 best pals in tow (as in, all three kiddos in our car--fabulously funny conversation/screeching!) Enjoy the pics!
Next, Jason and the never-ending big-boy-bed saga…he's been in the pack and play forever now and although we still try occasionally to let him do the BBB, I've really just given up for now. Until the other night that is when he finally figured out how to escape it's confines! The first time Ethan announced Jason's triumph. We returned him and didn't hear anymore until 20 minutes or so later when the door opens and out comes Jason with a backwards Texas cap, Ethan's underwear and shorts (two legs through one leg hole on both) and NO diaper or shirt. His movement was compromised by being through only one leg hole so he was moving slowly but was quite proud of his accomplishments and was asking for help to get dressed properly! (We figure that was his reason for finally coming out) Needless to say we were dying trying not to laugh out loud. We chose to video that instead of stills so I can't share, but get the visual in your head as it was hilarious! He finally ended up in his bed but when he woke up at 4 he went back to the pack-n-play without incident. It's going to be a continuous trial and error!
Finally, Mother's Day…Nate made an AMAZING brunch which we enjoyed outside, the boys gave me some wonderful gifts (new cooley flip flops, great lotion to combat the crazy hand washing we do, and Godiva!), Audrey had a great morning, and I got to share all of this with my mama! She got Godiva too! It was her last day here for awhile as she went back to work and my dad is taking the boys back to SA on Friday (she'll return for the last week of May). Can you even believe how fortunate we are to have them in our life? They've really been AMAZING and we are beyond thankful for their help; getting to spend so much time with Audrey and not worry about the boys daily stuff has really made a difference. It was a good thing it was mom's last day here though as the afternoon brought us some interesting visitors whom she would not have been excited about…. Here was our afternoon--we leave the hospital thinking the surgeon isn't going to get in to do her central line only to get a phone call as we are a minute from home that he's ready to get started. We panic not wanting our daughter to have a procedure without us there but decide to get home, let me pump and then head back. The boys and Papa are swimming when we get there so I go to pump and Nate hangs out with them. I'm nearly finished' when I hear, "Bob, big snake, Bob, oh man, get over here" Yes, that's right, a HUGE snake is by the pool equipment and upon further inspection, it's TWO huge snakes, apparently a mating couple! I'm running around trying to find a number for animal control, get my 2 neighbors over and finally animal control who removes them without incident. In the mean time, I've picked up Jason wrong and have terrible abdominal pain which freaks us out enough to call my doc about it, all the while realizing that Audrey's procedure is probably over and we haven't heard about it yet, UGH!! Obviously, I turned out to be fine, Audrey's procedure went fine, although it was the start of her desat, and the snakes were relocated, but man, WAY TOO much drama!! And don't forget how the weekend started, with Nate's wrist incident; he's much better now, didn't even go to the orthopedic doc.
There, now I've shared what all the new pics show. Oh, the one of Jeff--he ran his first 1/2 marathon on Sunday! He said people cheered for him along the way by shouting "go Audrey!", how cool is that?!! Audrey says "thanks, Uncle Jeff!" You can see in Audrey's pics the increase in fluids/edema (swelling) but she's still as beautiful as ever. We took the ear muffs off and her little ears are gorgeous. Her bottom is the cutest thing ever too, I don't have pics of it though, daddy won't let me yet! She's had a stable afternoon and is hanging out at 60% O2 which isn't the 40 from yesterday, but definitely good enough for now. Her vent settings aren't as low as yesterday either, but they are barely higher so overall, a good day, we'll take it!
Thanks for all your kind words today and everyday, they really make a difference. I have lots to say to many people specifically but just haven't found the time yet, I promise I will though. Just know how touched and grateful we are to each of you, especially those who are doing so much to help us out--from "Feed the Millers" to outings with Ethan or my recent favorite where Amy just automatically signed up to bring 2 things for E's class carnival so I wouldn't have to bring anything--the thoughtfulness we've been shown is AMAZING, thank you!
Talk soon, Jenn UPDATE: I just got home from the hospital...she's having a GREAT night! She tried to wake up a little, breathing over her vent, tapping my finger when I gave it to her and even fluttering her eyes a bit (they're too swollen to get open). We gave her more paralytic as she's proven to not quite be ready to be awake, but it sure is nice to see how badly she wants to wake up, what a fighter I have! Her O2 is down to 50 and she was continuing to sat 100/99! YAY!
Not so bueno, when I went to put yet more milk in the freezer, there was ANOTHER FREAKING SNAKE sitting right there in the garage, UGH! Although WAY smaller than the ones this weekend, come on! Needless to say, we'll be calling someone tomorrow. Hangin' toughJust got an update from Jenn...
The Miller's, including Audrey, are hanging tough! Audrey is having a better morning. Please continue to pray for peace, comfort and strength!!
Keep Shining Dear Audrey!
Stacy May 16 Two steps forward...one or so back; such is our new pattern. She had a great day and overall, she's doing well; it's just going to be a VERY slow process and when she wants to put the brakes on, she puts 'em on.
Real quick because I'm exhausted and starting to feel like a cold or something is starting...she got to her lowest settings ever today on O2, took her first 4 hours of feeds well (we may stop them though depending on the next 4 hrs as she's not refluxing them, but she's not doing great either), and showed us her best lung expansion ever (x-ray) as well as proved that she has no signs at all of PPHN (her heart is STRONG and functioning well); she decided though that that was big day and wanted to rest and so started to desat to the high 80's and wouldn't recover to mid 90's without increased O2. Her swelling is better than yesterday in her face and extremities but her trunk is still very big. Urine output continues to be OK, but could be better. She was given a transfusion today to help with her fluid movement.
Thanks to those of you like my parents who give blood in your community, we are benefiting from such selfless acts! My veins are horrible and I've never been able to give, I wish I could.
She's getting better, it's just not in the super strides a selfish mother wants. Today one of the babies across from us got to move to an isolette and be held (as in really held and cuddled) for the first time, it broke my heart to watch. I was genuinely happy for that mom but I so just want to pick Audrey up, take her home and be done with this. She's such a trooper and I'm so proud of her, but come on, this sucks (pardon my language but there really isn't another word), it's not an ideal welcome to the world. I haven't even seen her eyes open on their own for goodness sakes--she'll be 13 days old tomorrow and she's yet to see her mommy. I know it's coming and these tough nights will become farther in between, but I'm just sad tonight and needed to vent a little.
So many of you have written how selfless it is of us to keep this updated, but really our motivation is quite selfish--we've witnessed the power of all of you coming together for our sweet girl and need that power to be sustained; it's theraputic to write it out (I feel better already!); and we want Audrey to have a record of this amazing journey we've been on together--so thank you for indulging us by keeping up with our story and please continue to help us in our quest to bring our precious baby home--your thoughts, prayers, and support are doing SO much for us, I can never say thank you enough.
Love,
Jenn
PS Happy Birthday Sharon!
PPS I have lots of pics to share (and stories with some) but will have to wait until I have more time (who knows when that will be??!!) HBD to Angel Connor!Sorry it's day late, I thought about him and his family several times yesterday though! Amy, I hope y'all's day was filled with peace along with joy at the greatness Connor's books has achieved! Lots of love to you, hubby, and the girls!
Jenn |
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