12.20.2007 Wieder-Baby III is on the way! ETA: June 24, 2007 11.17.2007 Ouch! Q's molars are pushing through. 11.10.2007 Elliot health update: Everything is going VERY well. Elle's blood pressure (unmedicated!) remains very good. She has had NO swallowing problems to speak of. She's just a normal kid who can cough really loud to scare people. :) 9.21.2007 Quincy Lu is one year old!! 08.31.2007 Elle's first day of school. She's a big preschooler now. 08.7.2007 Shortly after Elliot's surgery began, all three doctors approached Krista in the surgery waiting room. She just about fainted, until they smiled and said, "All done!" They gave us incredible news. There was NO FISTULA. The doctors worked together, pumping dye in and out, checking with cameras from the esophagus side and the trachea and bronchial tubes and there was nothing. Elliot was able to come home already - the same day! As of this morning, they had her set up to go into intensive care and then intermediate care and stay at least two nights with food being pumped in by tube so she wouldn't have to swallow anything. This was such a difference and we are thrilled. Thank you for all the thoughts and prayers - they certainly worked wonders!! 08.7.2007 We're at the hospital and things are going well. The Valium Elle's pediatrician gave us is working like a charm. Thank goodness, too, because we just got word that the surgery has been delayed a few hours due to an emergency in the OR. With the new schedule Elle should be finishing up late afternoon. 08.6.2007 All set to go! We even have a popsicle breakfast lined up for Elliot, since she can't have solids in the morning. Elliot is quite looking forward to it. If we get a chance while we're at the hospital, we'll post updates to Elle's old caringbridge website: http://www.caringbridge.org/mn/elliotsue/ 08.3.2007 We took Elliot on a hospital walk-thru this week. Our poor little girl is so afraid. She must have started to cry 20 times during the tour. Her voice trembled when she whispered questions to me. At one point Elliot looked at me with big, earnest, tear-filled eyes and said, "Mommy, don't let me have surgery." Moments like that make me feel so unprepared to be a parent. After her last x-ray I feel like Elle doesn't trust us, or at least has figured out that we aren't always able to make her hurts and fears go away. But we're trying our darndest... Elle's now the proud owner of her first real Playmobil set. It's a huge hospital that took her mother 3 hours to put together (a mere 578 pieces that had to be snapped together to resemble a building and accessories). We have walked through the surgery many times with the little characters, all the way from getting an ID bracelet to walking out with a balloon. The first time we played "hos-pee-al", Elle thought that was all fine & good, "but I still don't want to get a surgery." I asked her to point to the part that scared her and she pointed right to the tiny operating room and the table and IV bag. I can't say I blame her. 07.17.2007 There might be a switch of doctors. Looks like Elle will be going in for her fistula repair on the 7th of August. 07.15.2007 Quincy's 4th tooth - her top left - has popped out. She wants to chew on everything! 07.13.2007 We finally heard back about the upcoming procedure. There are 3 doctors so it was taking a bit of coordinating. It sounds like we'll be going in on July 30th and, if everything goes as expected, will be an outpatient surgery. 07.10.2007 One of Elliot's doctors called today and said they are unable to tell from the scans if her fistula is a new one, or the same stubborn fistula opened up again. Therefore, the ENT doctor said he would definitely be willing to try to repair her esophagus by going in through her mouth. That is excellent news! We should be hearing from Elle's gastroenterologist tomorrow to find out more about the endoscopy and when all of this is going to take place. 07.09.2007 Elle's barium-swallow tests like the one she had on Friday are quite hard on her. After all the medical stuff she's been through, she's often quite afraid of medical procedures, especially when big machines are involved. The last time we had her in for an upper GI scan she screamed and cried and kicked and begged to please let her "give blood" instead of getting her x-rays. (She had just had some blood draws the week before, and the tech burst a vein in one arm and had quite a time getting blood out of the other one, so we knew Elle was honest-to-goodness afraid if she was willing to go through that again.) We ended up having no choice but to switch to a hospital that was willing to force the test. This meant tying her down to a table, through fits and screams and having a tube for the barium liquid threaded down her nose. This was no problem when she was a baby, but I don't think I've ever seen a child in such fear. I cried right along with her as I listened through the door to Elliot sobbing and begging the doctor during the test to please stop. BUT, after the test was over, Elle felt much better and Mommy & Daddy were the ones left stunned. In our guilt-laden stupor we walked our little girl straight to the hospital gift shop and told her she could pick out something for herself. After looking over all the bright and beautiful toys, including a giant stuffed rendition of her beloved Grover from Sesame Street, our little sweetheart chose a tiny toy car. Elliot visited a car show at the State Fairgrounds with her Grandpa Myron a few weeks ago and in the hospital gift shop she found a little red car (Papoo's favorite color) with flames painted on the sides (Papoo is a huge fan of vehicles sporting flames). "This is for Papoo!" she said, and her day was instantly brightened. Ours was too. 07.07.2007 We heard from Elle's main surgeon today. He said he looked over the x-rays and confirmed what we alreay knew - that the fistula is definitely there. These recurrences could be caused by the dilation procedures Elle has had done, or her esophagus might be having trouble growing along with the rest of her body so it is tearing. He's going to discuss the situation with the other doctors who have worked on her esophagus and trachea. He thinks an esophoscopy and broncoscopy are our next step, to take a look internally and see what the situation is. He is going to consult with the doctor who did the experimental (but not successful) repairs through Elliot's mouth to see if he might want to try again. There may be a better chance of success since Elle is bigger now. Depending on how things go, he might be putting us in touch with another doctor at the Mayo Clinic to get another opinion. 07.06.2007 Quincer learned to wave tonight. We caught her opening and closing her fist and looking at it in awe. We showed her that means "bye-bye" and she was quite proud of herself and her new skill. She also has been raising one or two fists high up in the air when we ask, "How big is Quincy?" The look on her face when she knows she's communicating is priceless! 07.06.2007 Elliot had scans today to see if her esophagus has developed another stricture (narrowing) because she is still having trouble getting some foods down. To our dismay, the radiologist found another fistula between her trachea and esophagus. Some of the liquid the doctor pumped into Elliot's esophagus drained into her trachea and lungs. This explains why Elliot's breathing often sounds rattly after she eats or drinks, and will mean another surgery soon. Elle's esophagus has slightly narrowed again, but not enough that the doctor thinks another dilation procedure needs to be done. She says the swallowing problem is probably just caused by the esophagus having less motility due to the original defects, scar tissue, etc. Elle's just going to have to keep working on chewing her food well and eating slowly. As for her upcoming surgery, we are waiting to hear from her surgeons this weekend. They are reviewing the films to decide what we are going to need to do. The last time this happened, we twice tried an experimental procedure down through Elliot's mouth to close the fistula but neither worked so she had to have a thoracotomy (surgery through her chest/ribcage). We are hoping and praying that there have been advances in the last two years that might make a thoracoscopic (through through her mouth) repair possible. 07.01.2007 Rick is no longer with Accenture. He's an Oracle employee now. 06.27.2007 Q's third tooth poked through on her top right-hand side. 06.25.2007 First steps! Quince took her first steps - while Mommy was out for dinner! Daddy and Elliot had the exciting news to share when Mommy got home. (Quincy seems to be keeping her walking a secret from Mommy - and will only make any steps when she's not around. Mommy's such a sucker for her poor little helpless baby. : ) 05.18.2007 Quinn is up off the floor and a beginner CRAWLER! 05.7.2007 Quincy has been inch-worming herself all over the place, with surprising speed. All the moving must tire her out because she slept through the night (10-11 hours each night) for 5 nights in a row last week! Typically, she doesn't sleep more than 3 hours at a time so this has been a huge change. 05.5.2007 Q had her first dip in a pool tonight at a water park. 04.19.2007 Quincy Lu pulled herself up to standing in her crib this morning. She looked down at her feet and then back at Mommy. It looked like she was thinking, "Why haven't I thought of this before??" 04.29.2007 At a visit to Great Grandma B's house, Quincy learned to push/pull herself around on the floor like an inchworm. All of the new and interesting things around Nanny B's house must have been just the incentive she needed. 04.19.2007 4th and goal! Elle has completed a whole month of good blood pressures with NO medication. In her words, "Hooray!!" 04.13.2007 Elliot had her third good blood pressure reading with no medicine. One more and we're golden! 04.11.2007 Quincy's first teeth made their sharp little appearance this morning. Her bottom two teeth both popped up together. Our little baby is growing so quickly! 04.6.2007 Something good to report this Good Friday: Elle's SECOND good blood pressure ENTIRELY OFF MEDICATION!! 03.21.2007 Yay! Today Elliot had her 4th good blood pressure reading in a row on her reduced beta blocker dosage. So now we get to stop the medication and see how she does. Quinn saw the doctor too, for her 6-month checkup. She still has the acid reflux, but is doing really well with milestones, etc. She is at 75th percentile across the board - height, weight and head size. Quincy's weight was 16lbs. 8oz. at 6 months and one week. That's what Elliot was at 5 months, so Quince has a little catching up to do! 03.21.2007 Quince is 6 months old... she is such a little sunbeam when she's happy, but she's a terrible mommy's girl! She's sitting up, admiring her big sister and chewing on everything in sight. 02.29.2007 A slight delay in Elliot's medication termination, we're giving it a few more weeks. 01.24.2007 It looks like Elle will be off her beta blocker (blood pressure medication) soon. We're ramping her down slowly and hoping to cut her off compltely next month. 01.07.2007 Elliot Sue is Three!! We can hardly believe it's been three years since we met this little one. The day she was born seems like just a few months ago, yet it feels like we've known her forever. 12.21.2006 Little Quinn is rolling over! 10.14.2006 Last night we had a "picnic" in our living room with Chinese food. Elle wasn't a big fan of the fare, but she ate some of an egg roll and several water chestnuts out of the chicken chow mein. After dinner she saw Daddy eat a fortune cookie and read the fortune out loud to Mommy. Elle took her cookie and walked across the room with it. She broke it in half, pulled out the little paper, leaned on the ottoman and "read" her fortune to us, very matter-of-factly: "You are STILL hungry. Better get more food." 09.21.2006 Quincy Louise is here! Summer 2006 Elle says that Mommy has a "little lamb" in her tummy. We're not sure where she got that idea. She also says she has a dog in her tummy and daddy has a cow AND a chicken in his! Whenever Elle is hungry, she tells us her dog needs to eat and when she has a tummy ache her dog is hurting. 06.18.2006 We broke the news to Elle that she is going to be a big sister. She seems completely unimpressed. 02.15.2006 Elle's 6th surgery - dilation of the esophagus. 12.25.2005 Elliot's second Christmas - and she loved every minute of it! We've discovered she's a party animal... she simply HATES leaving a perfectly good "pahr-tee". 09.26.2005 Elliot ate bread for the first time without choking!!! : ) : ) : ) 09.14.2005 This morning my 1.5 year old fashionista decided that her new halloween costume would be just the ticket for story time at the library. If the costume would have been appropriate for the day's weather I would have actually considered it. But alas, much to her chagrin, Elle arrived on the scene wearing a tank top, capri pants and sandals. As usual, she fit in nicely with all the other little toddlettes, but I guess today she was hoping for something to give her that little extra punch. 09.13.2005 Elliot loves ice cream. But always trying to be a good mom and wanting better for her, I usually mix my little girl's ice cream with fresh fruit, even when Rick and I indulge in chocolate. Last night the three of us were eating ice cream after dinner and Elliot finished her vanilla and raspberry concoction in record time. She wanted "MORE!" so I scooped some of my butterscotchy/chocolatey ice cream into her bowl. She took one look at it and said "Poo" (meaning "poop"). I told her that it wasn't poop, it was chocolate, but she insisted it was "Poo! Poooo!" I tried to feed her a little scoop to show her that it was, in fact, a delicious treat but the poor girl jerked her head away and burst into tears. Finally, after demonstrating how Daddy and I eat the brown ice cream she let me give her a tiny taste. Her face immediately brightened and she devoured it all, even drinking the last couple of drops from her little bowl with grand slurping noises. Now, as Rick said, we might want to make sure that for the immediate future she doesn't have easy access to poop. 08.22.2005 Elliot ate french fries!!!! We couldn't believe it. Elle's never even been able to take a little bite of a fry and get it down, but tonight she ate about 10! She even dipped them into ketchup with her little pinky up in the air. What a little girly girl we have. 08.18.2005 Elle's surgery went very well! (And actually, we clarified it yesterday - what she had done this time wasn't an actual "surgery" but more of a "procedure under anesthesia". I don't know why they keep calling it sugery?? I think maybe to scare the parents and keep us in line. But anyway, Elle did great and came out of the anesthesia with flying colors. She even enjoyed a big vanilla malt on the way home from the hospital. (So did her pajamas and car seat :) We were only able to give Elliot soft foods until tonight, when we tried some cheese slices and crackers. She did okay, but then it sounded like she had some food stuck. She managed to get it down but it made us nervous. We're hoping it was still just the swelling from the procedure and we'll try again tomorrow to see how she does. 08.16.2005 Elliot's heading in for a smaller surgery tomorrow to dilate her esophagus. Her blood pressure was high again this week so the nephrologists decided to put her on a higher dose of the beta blocker she was previously on. If her blood pressure isn't down tomorrow morning she can't have the surgery because they won't let her go under anesthesia, but she has been on the medicine for a few days now and should be good to go. 08.10.2005 NO FISTULA!!! According to the test this morning, the fistula hasn't grown back. WHEW! We're so relieved. And Elle is in a GREAT mood this afternoon... she must be relieved too. 08.09.2005 We can't believe Elliot is 19 months old already - this year is going even faster than last year! Tomorrow Elliot undergoes testing to make sure the surgery in May was successful. This will also provide more information for the doctor who will be doing Elliot's surgery next week to dilate her esophagus. Eating has been getting harder on Elle lately due to food getting lodged at least once a day. We're hoping this next stretch makes noticable improvement so Elliot can expand her dining repertoire. Elle's BP has been high again, we'll double check it at her pre-op appointment, but if her numbers stay as high as they have been she'll be back on medication. So if you see Elliot, tell her nice soothing things. ;-) Other news: Our basement is now completely finished so we can finally start moving the boxes, bins and unused baby gear down to storage! Krista's mom's side of the family had their reunion last weekend and it was great fun! Pictures should be posted soon... A trip to Switzerland is in the works for Krista... Rick and Elliot will have to go it alone for a week - should be interesting!! 07.26.2005 Things are going well in our neck of the woods (or suburbs as the case may be). Our lower-level remodeling is just about complete, we're busy as usual and Elliot is growing up right before our eyes. She has so many words now and has full knowledge that she is the queen of our universe. Many people have been asking for an update on Elle's health and we're happy to tell you she's doing great! We stopped blood pressure medication about a month ago and after a shaky start her readings seem to be leveling off at an acceptable level. We hope it sticks this time so she can be done with those stinkin' beta blockers. (Maybe we'll get a Beta fish to celebrate. :) The only lingering problem Elliot has is food getting clogged in her runty esophagus. She will be undergoing another esophagus stretch in August so that should help quite a bit. Elliot is a tough little cookie and I'm sure it won't even phase her. Her needs are simple - she just wants to be able to eat bread. :) 05.27.2005 We went to pay for our new boat this morning and as soon as we pulled into the lot our little one saw all the boats and started yapping. "Boh, boh, boh!" I guess she sure knows what a boat is! Grandpa Myron is very proud. 05.20.2005 We have a rocker. Elliot has been dancing for a while now, but tonight we were at an event for Rick's work and when the music started up Elliot started head-banging! We're not sure where she picked that up! 05.19.2005 Found out today Ellie also knows what an owl says. She pointed to one and with little pursed lips said, "oooooo oooooo oooooo"! 05.18.2005 Elliot finally learned what sound a cow makes. She says "mmmmmmmmmmmmmmaaaaaaooooo". (Well, she's close anyway. : ) 05.13.2005 - 10:00pm We are HOME!!!!!!!!!!! Elliot was doing so well today, playing and talking up a storm, that the doctors eventually agreed to send her on her merry way. I don't know if it's the new Tylenol-Codeine mix or if Elle is just so happy to be better, but she's been this incredibly fun-loving, vibrant, sweet and HILARIOUS little girl all day long! She's still definitely in pain (her expression changes when we lift her) but she's walking and lifting and bending and doing great. Elliot learned to say a new word today - "door". I thought that was fitting. And it's also funny that she came home on the 13th... that has always been her lucky number, especially where her health is concerned. Elle will be on almost a liquid diet for the next few weeks to give her esophagus time to heal. Then in 3 months she will have "upper GI" testing done to see if the surgery was a success. She will also have a procedure at about the same time to stretch her esophagus again, hopefully getting it up to the regular 12mm. All in all, this trip to the hospital was another success. We are so very thankful for all of the prayers and warm wishes from everyone, it has meant the world to us. 05.13.2005 - 11:00am Soft foods are going down the hatch! This morning Elliot ate some chicken broth, malt-o-meal and a tiny bit of Jell-O. She also had a little whole milk... so she's a happy camper today. As a matter of fact, she woke up on the right side of the hospital crib this morning and is about as cheery as we've ever seen her. She's waving at everyone, laughing, playing with toys and chatting her head off. The last thing to be settled before we can go home is pain control. Elliot can't have ibuprofen due to her high blood pressure and they're not sure if Tylenol will cut it. We can't take the morphine home and Tylenol with codeine has some not-so-good tummy side effects. The doctors are disputing if Elliot needs to stay another day or not. When the surgeons come around we're planning to lobby for going home today with Tylenol and Tylenol with codeine just in case. We'll let you know as soon as we find out since a few people have mentioned possibly visiting today. 05.12.2005 - 9:30pm No more epidural! ...it came out at about 5:00 this evening. And with that gone, we were also able to have Elliot's catheter removed. (So much for not having to change diapers!) Somehow along the way the EKG sensors were also ditched. So now, there is only an IV and an oxygen sensor to contend with. Elle is much more free to move around, but definitely still with pain, so her morphine is being upped to help with the lack of epidural. At the moment she is cuddled up in her crib with all her little stuffed friends, looking at her dog balloon and making doggie panting sounds. It seems that cats have fallen by the wayside in favor of dogs lately, especially after the dog show this morning. We were able to put Elliot in a stroller and cruise around the floor and take in the dog show. Elliot really enjoyed it. The trainer even had the dog do some tricks just for Elliot after the main show - so all in all it was a very good day! The really good news is that there is a slight chance of going home tomorrow, but since Elliot still hasn't eaten anything we're guessing it won't be until Saturday...either way things are going very well and as always we appreciate all of your thoughts and prayers. 05.12.2005 - 7:30am The NG tube is out!! That's the tube that went through Elliot's nose into her tummy. It was used to suction out her stomach and then yesterday to put a little baby formula in. She wasn't in any kind of mood to be messed with, because she had just gotten blood work done, but she is now drinking down Pedialyte like crazy. She was so sad and crying and shaking but as soon as she got the Pedialyte she turned into super-happy, super-confident, don't-mess-with-me-and-my-sippy-cup girl. She's like a puppy protecting her food... if we so much as touch her she grumbles a warning. But she keeps finishing the little amounts we can give her at a time and holds out the cup, gives us a huge smile and nods sweetly. Oh, and speaking about puppies... there is a dog show this morning in one of the playrooms here. There is a chance we can get Elliot and all her equipment loaded up to push her in a stroller so she can go see the dogs. I'm sure she would love it because last weekend she started smiling and making a funny panting sound whenever she saw a dog. Anything to take her mind off the equipment sounds great to us! 05.12.2005 - 4:30am It's all Elliot this morning! I woke up at 4:00 am to hear Elliot talking to her Elmo and Cookie Monster balloons. It looks like our kid is back. It's only 4:30 right now and we have been busy bringing her various toys from the playroom and trying to keep her entertained. (So far that means holding toys above her because she can't really sit up yet.) It looks like it may be the beginning of a very busy day for our little one. We are no longer in the ICU. We moved to "the floor" yesterday afternoon, but were placed in a room with a VERY sad (and loud!) little boy. After a while we were transferred to a quieter room down the hall and do not have a new roommate yet. Today looks like it will be a good day for visitors if anyone is interested, just drop us an email. Elliot may be able to get the NG (stomach tube) out today and that could mean a chance to eat, or at least maybe drink. The epidural will probably stay in for a while, they haven't started to wean off the dosage on that yet. OK - looks like Elliot needs some action over there, I've gotta go put my party hat on... 05.11.2005 - 9:30am If you hand Elliot her stuffed kitty this morning, you're likely to have it thrown at your head. Our kiddo is mad at the world and I think that's mostly due to the lack of food or water. She keeps smacking her lips and pointing at the door. (She usually smacks and points toward the kitchen when she's ready to eat.) Her stomach still isn't working well yet though so they are leaving the NG suction tube in another day and that means no food or drink. We're happy that she even seems interested in eating, that's great progress. Other improvements are many... It looks like Elle will finally be transferred to a regular room sometime today. Since she can't have an artery tube in when she's outside of the ICU they removed that this morning. Elliot's happy to have both hands back and keeps investigating them. (Per our request, her IV is in her foot so she can actually use both hands during this hospital stay!) The surgeons also decided that they could already take the huge chest tube out since it wasn't draining much anymore. That looked like a horrible process, it was stitched into her side and had to be cut apart and then yanked out of her... but Elliot was so brave. She watched the whole thing and didn't cry a bit until it was all over. (I think she is going to be a surgeon). That's about all I have for updates. Thanks again to everyone for the speedy recovery prayers... they appear to be working splendidly. 05.10.2005 - 5:30pm Lots of sleeping going on here (and playing with mommy's ear). We saw quite a bit of improvement in Elliot throughout the afternoon. She even nodded yes when we asked her if she wanted to watch Sesame Street so we did that for a bit and she fell back to sleep again. If she keeps snoozing so well I bet we'll be out of the ICU in no time. 05.10.2005 - 10:30am Looks like we're going to be stuck in the ICU for another day. Elliot's having a hard time keeping her oxygen up and the doctors are having a hard time keeping her pain under control. We've been moved to the back corner of the unit because every little sound has been agitating her. She is on morphine, tylenol and her epidural narcotics but she still has a very hard time getting any rest. She just cries a raspy little cry and looks at us like she wants us to take her home. They'd like to give her something like valium again to help her to relax but they are worried she wouldn't be able to keep breathing on her own. All that being said, Elliot REALLY IS doing well. Nothing she is experiencing is out of the ordinary given what she went through and the doctors are quite happy with the way she is progressing. 05.10.2005 - 4:30am So far we've seen Elliot's eyes a little bit and she's squeaked out "mama" many times. In the night she made her sign for the word "duck". And early this morning she said "dada". With her free hand she has been rubbing her ear a little bit and even mommy's ear for good luck. This is definitely our Elliot. Any time now I'm sure we'll be begin to see the rage against the machines... 05.09.2005 - 7:30pm Elliot is doing so well... she is such a little trooper. She's still in the ICU but will hopefully get transferred to "the floor" tomorrow. She is without a breathing tube, just O2 blow-by. It's kind of funny though, I'm sitting here working on my wireless laptop while my daughter is lying near me, hooked up to more wires than any computer of mine ever had. She has a regular IV in her foot, an arterial IV in her wrist, EKG leads, a catheter, an epidural, an NG tube into her stomach through her nose, and a chest tube in her side. Unfortunately, with all of those we can't hold her yet - not that she would even want us to, she's in quite a bit of pain. The epidural seems to be helping though and she's getting a bunch of morphine too. I'm hoping she gets some good rest tonight and is ready to start bossing around the nurses tomorrow. : ) 05.09.2005 - 9:00am We just saw the 3 doctors who are working on Elliot. They found a stricture in her esophagus that is probably what is causing the eating problems. She was at 8mm and should be at 12. They were able to stretch her to 10 but didn't want to be more aggressive to avoid ripping the esophagus. We're so happy that they were able to find something because there has so obviously been something wrong and nobody has been able to figure out why until today. The doctor who was going to be putting the tube in Elle's TE Fistula was less successful. He said he tried three different tubes but was unable to get one all the way through the fistula. They finally tried with a wire and got it most of the way through and are going to try the surgery with that. The doctor said Elliot is doing fine but he may have said a few bad words. I told him if Elliot comes out of this swearing there will be hell to pay. : ) The surgeon is going to go in through her side now. He said it will take 2-3 hours for his portion. He has to push her lung aside to get in to where the fistula is and I guess that can automatically cause high blood pressure. So they're putting an extra line into a wrist artery to more accurately monitor her blood pressure and make sure she is a-okay. Her blood pressure has been great lately, however, so we're hoping that continues. They also told us that since chest surgery is so painful they will probably be giving her an epidural to help with the pain. It looks like she might be in the ICU overnight, but we'll definitely let you know as soon as she can have visitors. Talk to you soon... 05.09.2005 Elle is now in surgery. A few more hours and our baby girl should be all fixed up. 05.08.2005 Elliot is going in for her 4th surgery tomorrow. Please send your prayers her way. 1.17.2005 2nd experimental surgery to fix Elle's recurrent fistula. 11.11.2004 Elliot took her first steps today - 4 in a row, all by herself! 11.07.2004 We're in the double digits... Elliot is 10 months old 11.06.2004 Elliot's first swim in a pool 11.02.2004 It looks like we might be moving in December!!!! 10.31.2004 Ellie Sue is a teddy bear for halloween Thursday, August 19, 2004 10:21 AM Our little girl is growing like a weed and is happy as a clam. Ellie's blood pressure was very good at her last check-up but the nephrologists asked that we keep her on the medication for now. The pharmacist added banana flavoring this time, and since it's the only thing we're able to give her besides milk and rice cereal, she seems to be enjoying it. Tomorrow we're going in for yet another round of blood tests (so much for "happy as a clam"!). The high ionized calcium seems to be quite a concern even though according to the ultrasounds it doesn't appear to be damaging Elliot's kidneys. Ellie is now 7 and a half months old. She's finally able to be around other kids and we started her in day care near Rick's work 2 days a week. I ride dowtown on the light rail with them in the morning, work at a wireless internet coffee shop until noon, have lunch with Rick, visit Elliot and go home to work the rest of the day uninterrupted! Elliot takes the train home with Daddy in the evening. It's working out pretty well and our little social butterfly loves entertaining people on the train as much as her new little friends at "school". August has been quite busy for Elliot... she started solids (rice cereal), got her first tooth, began crawling, and is constantly pulling herself up to standing. She wants to be a big kid so badly. Mommy and Daddy want her to JUST SLOW DOWN AND STAY LITTLE!! Monday, June 7, 2004 8:00 AM Happy Birthday to Elliot!! Our little super trooper is 5 months old today. When they said time would fly, we had no idea! Ellie gave us her first real strong giggles last night and also let us know that she really loves her daddy... Rick played softball yesterday and whenever he started to leave the house, she'd start to cry - just a quiet, sad cry. She melted his heart and probably could have gotten him to stay home. I think we'll practice this new skill of hers and try it out the next time Rick wants to go fishing. Hee hee - only kidding, Rick. OK - as for the medical update... Ellie's blood pressure was elevated again last week, on both arm and leg readings. But we're going to keep her medication at the current level and see how she is this week. Hopefully, it was just a fluke and everything will be back to normal. We want to stop the medication soon! I'll try and post new photos later today... -Krista Saturday, May 29, 2004 6:15 PM Everything is going pretty well here. Elliot is almost 5 months old now and has starting teething, has rolled over a whole 5 times, and can sit up by herself for a short time. She's at the top end of the growth charts at approx. 16.5 lbs. The nephrologists still cannot figure out why Elliot has the high ionized calcium, and it went up slightly higher again. But since her kidneys have not yet shown signs of calcium build-up, there doesn't seem to be too much to worry about. The additional blood tests gave no answers so they said they will just continue to watch her and study her case. On a happy note, Ellie's blood pressure has remained steady so we lowered the amount of medication we give her at each dose. So far so good. We'll keep bringing her in every week for monitoring, and in about a month we may be able to cut her off the medicine completely! Elliot had an appointment with her surgeon last week too, and he said things are looking great. We may even be starting to give Elliot real food soon. No more medicine, real food soon... things continue to look up for our little Elliot!! - Rick and Krista Monday, April 19, 2004 9:00 AM Elliot's nephrologist just called. Her calcium levels are still high... in both blood and urine. Fortunately, they didn't see any calcium build-up in the kidneys from the last ultrasound. But unfortunately, I have to take my baby girl to get more blood taken this week. This sucks. Thursday, March 25, 2004 9:00 AM Yesterday was Elliot's big day at the hospital. We visited the radiology department, the nephrology department, the x-ray/lab department, the NICU and Labor and Delivery!! Radiology: Elliot had another kidney ultrasound done and chatted right through it... no problemo. Nephrology: The doctors looked over the scans right away and, much to our relief, the kidneys matched in size!! (A special thank you to the Sanislo family, who prayed at noon for us when we were getting these results!) Elliot's blood pressure was great too! So we're cutting back on the amount of medication she's getting at each dose. She'll be going back weekly for blood pressure monitoring, but those little leg and arm hugs are easy cheesy for this little girl now. Lab: Last week I said Ellie had some high enzyme level... turns out it's some low enzyme level. The doctors didn't seem overly concerned, but wanted to check it again. The high ionized calcium also needed to be re-checked, and it seems there was a high calcium content in the last urine test so we had a fun time giving lots of blood and other good stuff. The doctors have been very happy with Elliot's fast weight gain (she was 13 lbs 3.8 oz yesterday!) but her pudgy little arms made it difficult for the techs drawing blood. Elliot was not pleased with the situation and she let everybody know. But we eventually got it over with and got out of there. And then, it was on to the... NICU!: We had arranged to stop by and visit Elliot's old stomping grounds and had a nice visit with her favorite nurse, Lori. Ellie felt right at home and fell right asleep. Labor and Delivery. No, Ellie was not born at the same hospital, but earlier in the day, we got word that a friend had a baby there that morning, so we did a quick swing by for Elliot to drop off a little present and welcome her new pal to the world. "It ain't so bad around here," she said, "just avoid the lab." Wednesday, March 17, 2004 10:00 AM Elliot's baptism day was wonderful... at least for her mommy and daddy. I'm sure Ellie thought it was a little weird, but she was a good girl and didn't even mind the water poured over her head. I wish everyone could have seen my little angel in person that day - she sure was purty! I didn't know if anyone was watching this site anymore, but I've gotten a few email requests for those baptism photos I promised... so they're here - thanks for asking! Last week's nephrology appt. was postponed by the doctors, so we only had the regular pediatric visit. Elliot had to get her first set of immunizations and was a trooper. I never thought I'd have a baby who's so happy at the doctor's office! Elliot's weight is still climbing - she's now up to 12 lbs. 9 oz. and has gone from the 25th percentile for weight to the 90th!! I think she gained at least a pound of it in her big chubby cheeks. By the way, Elliot's head size went up to the 98th percentile. No wonder she's having a hard time holding up that noggin. Results from Elliot's last labs have slowly been trickling in. It's been very frustrating to wait so long. Rick talked to one of the doctors a few days ago and they said everything looks okay but there is some sort of enzyme level that is high. So unfortunately, Ellie gets to share more blood next week. On the plus side, the blood pressure reading we had at the pediatric office was quite good. So there is a chance the high ionized calcium and the enzyme are not hurting anything and Elliot's kidneys are just fine. Hopefully we'll know for sure after next week's appointment, when she gets her new ultrasound as well. Wish us luck! -Krista Friday, March 5, 2004 1:00 PM CST Last week we visited the Nephrologist again. (Thanks to Elliot's Auntie Chris for coming along to help!!!) Elliot's blood pressure looked much, much better and I was SO relieved to hear that. I thought this new parent worrying stuff had subsided, but then a few other issues came up. The doctors told us that the scans of her kidneys from the hospital show that Elliot's kidneys may be two different sizes. They said for adults, there is concern when one kidney is 2/3 of an inch bigger than the other. Ellie's only look to be one centimeter different, but apparently that is enough to worry about when the patient is as young as she is. We'll be getting another ultrasound in a month to see if there have been any changes. The other concern was with the labs she had done a few weeks earlier. Her ionized calcium level looked high and apparently that's not good news. Several times I asked what could cause the high ionized calcium, but was told that it could be a variety of reasons. I couldn't get specifics - they only would say not to worry, that more labs would be done and they would figure it out. So we took Elliot to the lab and had more blood drawn (poor thing!) and more urine taken. Of course, the first thing I did when I got home was check online to see what can cause high ionized calcium. I found information on hyperparathyroidism, kidney disease and lots and lots of articles on leukemia! No wonder the doctors didn't want to say what could cause the high calcium. I decided not to tell Rick about my unwise decision to research something that would only make me worry more. And needless to say I was worried sick all weekend until I finally got in touch with one of the doctors on Monday. She told me they don't think we need to worry about leukemia because they checked her white cell count and that is fine. One of the thyroid tests came back fine as well, but they are still waiting for a thyroid hormone test and some other labs. Unfortunately, they re-checked the ionized calcium and that was still high - even a little higher. The rest of the tests aren't expected back until late today (Friday March 5th) or Monday (March 8th.) After the results are in we still have to wait for the doctors to confer and then we will hopefully be hearing something Tuesday or so. On a happier note, the pediatrician okayed it for us to have Elliot baptized this weekend! We had to make special arrangements to be a little secluded from the other families at the service and are only having her grandparents and aunts and uncles attend. It's not quite how we imagined her first big day, but we're happy nonetheless. And we think we just made it in time for Ellie to fit into my christening gown. Hopefully we'll get some cute pictures to post next week! Thanks again to everyone for your continued prayers. Elliot sends all her love and big wet slobbery kisses!! -Krista Wednesday, February 25, 2004 6:15 AM Ah, the life of rookie parents... Last week Ellie seemed to be having trouble breathing at night so we called the doctor. They had us come in right away because she had the surgery to her trachea and esophagus. The doctor wasn't able to find an infection, but thought Elliot might have been fighting off a tiny bug or just breathing raspy due to her flimsy trachea. We were happy to hear that she seemed fine, but when her blood pressure was taken we found out that that was up higher again. Today the nephrologist (kidney specialist) will be seeing her to determine if we should increase her medication. We will hopefully also be getting results from several of the blood tests she had taken last time - they required a few weeks for processing. Elliot's not worried about any medical issues, however. She's a happy little 7-weeker today and she has recently started giving us intentional smiles. She also started cooing and gurgling more. She likes to carry on conversations with anyone and anything that will listen - her parents, her stuffed animals, the corner of her cradle... It looks like we may have a little politician here. Friday, February 6, 2004 3:45 PM Our apologies for the late update. This little girl is keeping us very busy. Last week at Elliot's pediatric appointment, we had some great news - everything is looking good. Elliot is a healthy, happy little girl. She was at the 50th percentile for height (21 inches) 25th percentile for weight (8 lbs. 4 oz.) and 75th percentile for the size of her head! The bad news is that the pediatrician said she definitely wants us to continue limiting Ellie's exposure to people because she can't get sick. She said even a cold would have this little one back in the hospital and on oxygen. She did say she understood that there would be no getting around Elliot's grandparents and our brothers and sisters visiting her, so that would be fine as long as it's adults only, and we have to be very careful. Luke and Christy (Elliot's aunt and uncle) did visit this week and it was wonderful to have Elliot seen by people from the outside world. We can't wait to show this baby off to everyone - we see her changing every day. It looks like her hair is starting to turn blonde already - we think she heard the rumor that blondes have more fun. This week we visited Elliot's surgeon and there's not much to report there - everything looks just fine. At the blood pressure check yesterday, her levels are lower than they have been yet. Hopefully we're getting that situation turned around, but Elliot will be staying on her medication because she's still on the high side. We also had her weighed and she's already up to 9 lbs. 5 oz.! Overall, things are going well. We're adjusting to getting sleep in short spurts and Ellie seems to be getting used to her rookie parents. She'll be a month old tomorrow so it's about time! Wednesday, January 28, 2004 8:10 PM Hello and thanks for visiting our handy-dandy Caring Bridge website. : ) Elliot is three weeks old today! We visited the Nephrologist at Children's Hospital this afternoon. The doctor feels that the high blood pressure was most likely caused by the tubes inserted into Ellie's belly button and should clear up on its own within the next two years. Elliot will remain on the medication until her blood pressure goes down, and for the time being, will just need to go back for monitoring once a week. Just to be on the safe side, additional tests are being done to make sure the hyper tension is not caused by something more serious. Our spunky baby had a big problem with her arms being held down, but pretty much fell asleep when the needles to draw blood were inserted. She seems to think this medical stuff is all old-hat. She does better with blood-draws than diaper changes!!! (Very weird.) Tomorrow we visit Elliot's pediatrician... we'll update again afterwards. -Krista Monday, January 26, 2004 7:45 PM Hi folks! Ellie's been home with us now for 5 days and we're loving every minute of it. She seems every bit the normal baby (if normal means having a poopy diaper every time it's Daddy's turn to change her). We were visited by a nurse from the hospital on Thursday and Elliot is up to 7 lb. 9 oz. Her blood pressure is better, but still on the high side, even with her higher dose of medication. We are visiting a nephrologist (kidney & blood pressure specialist) at the hospital on Wednesday, so hopefully we'll get more information then. On Thursday Elliot will visit her pediatrician and we'll find out how soon she can start having visitors. We'll let you know what we find out at this week's appointments. Ellie sends her love, and Krista and I do too. -Rick Wednesday, January 21, 2004 11:00 AM Hi all. Guess what. Ellie came home last night. It was one of the best days of our lives. As much as we want to show off our baby, the doctors told us that we need to protect her from colds, flu and any respiratory illnesses. They said that with the weak trachea a minor sickness could be fatal for our little girl. There is nothing we would like to do more than to show Elliot to the entire world, but at this time, for her sake, we kindly ask that she have no visitors until she is stronger. We pray you will understand. Thank you for all of your thoughts and prayers - she wouldn't have gotten this far without them. We have posted a few new photos in the photo album, and will hopefully have our own website soon where we can show more than three pictures at a time! Krista and Rick Monday, January 19, 2004 8:45 PM We're still trying to figure out what is causing Elliot's high blood pressure. The medication she has been taking to temporarily keep it lower was stopped today. It was increasing her heart rate so much that she was miserable and unable to sleep at all last night. She seemed like she was on a caffeine high and acted like she wanted to eat every half hour! Rick and I have been spending the night in her room the last few nights to take care of her (diaper changes, etc.) and feed her. One of the requirements for Ellie to come home is that she is feeding well and gaining weight so that little girl and I are trying our darndest... even if it does mean "snacking" around the clock. The doctors found a new medication that they are trying which has a side effect of LOWERING the heart rate. We think we'll like this med much better. It was given at 4:00 this afternoon, but so far we haven't seen any changes to her blood pressure or heart rate. Tests: Elliot's heart echo test today went fine and the doctors told us everything looks good in the heart department. (WHEW!) Yesterday a test was done to determine if Elliot might have a rare tumor in one of her kidneys that is causing the high blood pressure. This would require another surgery to correct the problem. We should hear results tomorrow. There was a hearing test today that all the babies are required to take before they can go home and Ellie passed with flying colors. And finally, there is talk of Ellie going home soon!! There is a blood pressure specialist on this case and we may be able to take her home on some carefully monitored medication. We will be visited by home care nurses so that will help relieve some of the stress of bringing her home without this issue fully resolved. We'll find out tomorrow during rounds when they think we can bring our little girl home. (Just another reason for us to not get sleep tonight!) We'll be sure to post an update tomorrow... -Krista Saturday, January 17, 2004 9:18 PM CST Well, we started off the day thinking Elliot had two tests to make it through (another kidney & a heart test), but as it turned out we ended up with no tests today. Ellie's high blood pressure and heart rate continue to be the main issue. The heart scan has been rescheduled for Monday and the kidney test has been cancelled all together because an expert looked at the results of the ultrasound and determined that nothing more would be found. Right now the doctors have adopted a 'wait and see' approach with the high blood pressure. Frustrating, but it sounds like all that can be done at this point. On the good side of things, we lost another tube today. Through determination and a complete disregard for her own well-being (i.e. sleep), Krista managed to win the battle of wills with Elliot and has her feeding so well that they cut off Ellie's IV this morning...and tonight they removed the IV needle from Elliot's foot all together. So Krista and baby are feeding without a safety net from here on out. Tomorrow promises to be a quiet day - they continue to give Elliot blood pressure medication about every eight hours. It seems to work, but hopefully soon her blood pressure will stay low with out the meds. Many thanks for all the warm messages of support - Krista and I really appreciate them. Rick Friday, January 16, 2004 6:45 PM The new kidney ultrasound didn't turn up anything so the doctors are still not sure what is causing Ellie's high blood pressure. For now, they gave her some medication to bring it down but it has increased her already high heart rate. So for tonight we're just trying to keep her calm. They have scheduled a different test for Elliot's kidneys tomorrow that might be able to turn up something. She's also having a test on her heart to see if everything is alright there. No, Elliot is not named after the character in the movie E.T., but lately the scene where he rips the stat sensors from his chest has been sticking in my mind. I want so badly to unhook my little girl and run home with her. If the doctors find one more thing wrong I'll be devistated. I know we probably seem like we're trying to monopolize your prayer time, but please keep our little Elliot in your thoughts over the next day or two... it's gotten her through so far, we just need a little more help. -Krista Friday, January 16, 2004 1:15 PM Elliot's chest tube removal went well yesterday and she only had to get one or two stitches. The feeding tube came out and now she's stuck to her own devices for getting any food in addition to the IV fluids. The final tube going into her belly button was also removed. Ellie was even moved into a crib of sorts last night and she seems to love her new digs. It was fascinating to watch her with her eyes open, kicking her little legs. Elliot is starting to look like a real baby!! Unfortunately, our "two steps forward, one step back" tradition continues, and the doctors have become very concerned about Elliot's high blood pressure. Her median pressure has always been high, but has been rising for the last few days. It is 100-120, and for a baby her age should be 40-60. Ellie is getting another kidney ultrasound right now because apparently the kidneys control blood pressure. As we mentioned before, kidney problems are one of the most closely associated problems with Elliot's condition. There is a chance that the belly button tubes could have caused a blood clot that is affecting the kidneys and that would be one of the best scenarios because the doctors should be able to fix the problem. If we don't see anything like that on the ultrasound, she will be put on high blood pressure medication. That's all for now - we'll let you know what we find out. Elliot sends kisses to everyone! Thursday, January 15, 2004 3:45 PM Elliot is getting the chest drainage tube out at this very minute!!! We can't wait to cuddle our little girl without that tube there giving her pain. The surgeon is also removing her feeding tube, so we're going to try feeding her tonight. We'll try & post more later tonight... she's all done and we've gotta go see our little sweet pea! Thursday, January 15, 2004 9:00 AM There has been a slight delay in Elliot's schedule. Nursing and/or bottle feeding will require the tube that goes from Elliot's mouth into her tummy to be removed. This normally wouldn't be a big deal, but because of the TE Fistula repair, if feeding doesn't go well the feeding tube cannot be replaced without another surgery. Last week, the feeding tube was re-taped by a nurse and it moved one centimeter. Even that little bit of movement almost made us not be able to put food in her tummy. Luckily, we are still able to give her milk, but only on continuous drip, not any quantities at once. We have been trying to get Ellie to take a pacifier to make sure she'll be able to eat but it hasn't been going well. The nurses tell us this can be for several reasons. She may have an aversion to things being placed in her mouth after having so much experience with the respirator, the feeding tube, frequent suctions, etc. Also, she has a very raw throat due to the respirator being in for so long and she may not want to swallow. In addition, because Elliot is being fed via continuous drip, so she may not be hungry enough to suck. We're hoping to see some improvement today. The surgeons said that since she is getting food via tube, they may be able to take the side drainage tube out before mouth feedings start. We can't wait for this because it would mean we could hold our little girl. She might even be able to wear clothes! (So far our poor little glamour girl has had a wardrobe consisting only of one or two socks, a blanket and bows stuck to her head.) Her first priority is food though - we just need to convince her of that. Hopefully today will be the day. Wednesday, January 14, 2004 1:45 PM No leaks!! The radiologists have reported that Elliot's esophagus is holding tight and that's GREAT news. The surgeons just met with us and said that after they verify the X-Ray results, they'd like us to try feeding her by mouth. She'll probably have to try Pedialyte or milk by bottle at first, but if that goes well she can try nursing. Unfortunately, the drainage tube from the surgery probably has to stay in until at least tomorrow. She has to eat for a while first before they can take that out. IV lines in Elliot's hand and the line in her belly button will also have to stay. Other not so good news is that even though Elliot's esophagus repair is looking solid, that part of the esophagus is much narrower than the rest. This is apparently common with this type of surgery. Hopefully it will stretch as Ellie grows, but worst case senario is that they'd have to put a stint in later. Also, her trachea is "flimsy" which is also common with Elliot's condition and we may hear raspy sounds to her breathing that she will eventually grow out of. We asked if we need to worry about her breathing when we get her home and they said not too much... the thing they are most concerned with is that she not get any type of respiratory infection for the next few years. Thanks to everyone for all the kind words in our guest book and to our email... it means a lot to us and has definitely been helping us get through all of this. -Krista and Rick Wednesday, January 14, 2004 9:20 AM Elliot just finished her dye test. (That's where they place dye down a tube in the mouth and then X-ray to see if there are any leaks in the esophagus.) We won't hear results probably until noon or so, but if things look good she can get that big nasty drainage tube out of her side. One of the tubes in Ellie's belly button was also removed. It was there to accurately monitor her blood pressure. Now she just gets a cute little blood pressure cuff on her leg. Elliot still has one tube in her belly button that they can use to take blood out without sticking her, and that will hopefully be removed soon as well. Her breathing is going very well - not at all like last week where every ounce of her being was used to figure out how to get oxygen without full use of her right lung. If all goes well, she'll have much fewer lines and open spots for infection, and she should even be able to have visitors soon! We'll update with results from the dye test ASAP. Tuesday, January 13, 2004 4:30 PM Ellie is off the respirator!!!!!!!! The X-ray from this morning looked great - that little lung finally opened up with the therapy and medication (and prayers!) She was taken off the ventilator at about 2:00 this afternoon. And unlike last time we tried this, today Elliot breathed like a champ. She did so well, in fact, that the nurse let me hold her (hence the late update). Of course it took a team of experts to get her on my lap and manage all the wires and tubes she's still connected to, and I had to hold her AND the little mattress she's was on, but it was WONDERFUL. More good news - Elliot's kidney ultrasound shows that everything is normal in that department!! Tomorrow Ellie will be tested to make sure her surgery went well. Dye will be put down her throat and then she'll be X-rayed to make sure there are no leaks where she was repaired. If that all goes well, the big drainage tube stuck in her side will hopefully be removed. Also, we will be able to try feeding her by mouth. Thank you again to everyone - I'm so happy today that it feels like my heart will explode. Rick and I heard Elliot's tiny, raspy cry a little while ago and it was the most beautiful sound we've ever heard. (I know, I know... we'll see what I think of her cry a few months down the road. : ) -Krista Monday, January 12, 2004 4:45PM After talking with the doctor this afternoon, we found out that Ellie's partially collapsed right lung has not yet opened, so she will be on the respirator for at least another day or two (until we can get it to open). They are going to give her some asthma-type medication to see if that might help. The good news is that those little swollen intestines are looking better, so the nurses have started her on breastmilk fed through a tube down to her tummy. Ellie's kidney ultrasound was this afternoon and we'll probably receive results on that tomorrow around noon. Elliot opened her eyes for a little while late afternoon and had some fun kicking those little legs of hers. Maybe the milk is giving her a little more energy! Monday, January 12, 2004 8:00am Thanks for keeping me, Krista and the newly arrived Elliot (Ellie) Sue in your thoughts. Its been a heck of a few days. Right now, everyone is doing pretty well, considering everything that has gone on. Its not easy to give a status without a brief history of the events on Wednesday, so here is a sort of timeline of events: - Got into the hospital at 6:00am…baby was born at 7:04. Krista is a birthing super-star. - Elliot was with us for the first hour and everything was going well….except she kept coughing up large amount of spit, etc…..Not uncommon, but it was beginning to attract attention - After an hour I went with Ellie to the nursery for routine birth check-up, measurements, etc. Krista stayed behind in recovery. - Coughing/spit-up continued…they called in a doctor from peds and then worrisome news started to be thrown at me. They couldn’t get a suction tube down her throat, then they took an x-ray and diagnosed her with "Tracheoesophageal Fistula and Esophageal Atresia". Basically, Ellie was born with her esophagus not connecting to her stomach. Instead, it stopped halfway down her chest and created a pouch, so when she created saliva in her mouth and tried to swallow fluids, they would just come back up. That’s why she was coughing so much immediately after birth. As part of this condition, her trachea was connected to her lungs correctly, but then also continued and connected to her stomach. - So once diagnosed, things moved quickly – a transfer team arrived from St. Paul Children’s hospital and Ellie was packed up and on her way to a new hospital. I followed her there, leaving Krista at Regions hospital. By 4:00pm in the afternoon, Ellie was having major surgery to fix her plumbing problem. - Krista was transferred to United Hospital which is attached to Children’s and was able to see Ellie again right before surgery. The surgery could have gone a number of ways which were painfully described to us in detail before the surgery, but we were fortunate that it went as well as could be expected. Ellie is fixed and should have no lasting affects once everything heals. It is also common to have other problems if you are diagnosed with this problem…including heart issues and kidney problems. An ultrasound of her heart turned up negative and today (Monday) she get the ultrasound of her kidneys…although she is peeing just great, so the doctors are not too worried. Right now it looks as if we are fortunate that this is an isolated defect. Ellie came out of the surgery on a respirator which does the breathing for her. They removed this on Thursday, but then she was struggling to breathe. So after trying a few other machines to get our little girl's oxygen level up, they ended up putting her back on the respirator on Friday morning. She still has this and seems to be doing well with it. Our hope is that it comes out today (Monday). The poor little girl has been on pain killers continuously, so we have barely seen her eyes and we haven’t been able to hold her except for right after she was born. Today is a big day because of the possible removal of the breathing tube, the kidney ultrasound and also she may be able to get her mother's milk down a feeding tube for the first time. Wednesday we will have tests to see if the surgery was a success. Soon after that we are hoping that Elliot will be able to get the drainage tube out of her side and possibly even eat by mouth. Krista is doing very well considering. Its hard on her not holding the baby but we are working through it. We are splitting our time between the hospital and sleeping at home at night. Ellie will remain in the Newborn Intensive Care Unit for probably another 2-3 weeks while everything heals and then we should be able to bring her home. Again, thanks for keeping us in your thoughts and prayers. I will talk to you soon. I have attached several photos – She has more hair than I've ever had, plus it's dark brown - almost black – we are still trying to figure that out. Rick