tag:blogger.com,1999:blog-85142298235045518292024-03-07T21:52:26.272-08:00My Gastroschisis BabyThe story of our baby boy with Gastroschisis- beginning week 31.HisMommyhttp://www.blogger.com/profile/05448511533056237782noreply@blogger.comBlogger36125tag:blogger.com,1999:blog-8514229823504551829.post-79399802471623097042010-10-27T20:16:00.000-07:002010-10-27T20:16:59.543-07:00and now there are TWO!Man, it's been a long time since I've posted! My apologies if you're an avid reader who's been waiting patiently for an update... ;). Let's start with Dominic- he's awesome! He's about 20 months now and is just becoming more and more of a big boy. He loves balls and anything with wheels (car, truck, tractor...). He always goes right for those toys in any setting he's in. He knows a lot of his body parts, and loves LOVES to read. He's always carrying books around, bringing them to us, or sitting down on his own to "read" them, which means he sits there turning the pages, babbling at the book... it's adorable. He's learning so much and has such a great memory for things; I'll point out different things on the pages of the book and as we go through it he can point them out when I ask! That's probably normal for his age, but it still makes me really proud and makes me think he's just the smartest boy in the world =). He knows words and can say quite a few, but he really doesn't talk very much (speak English.. he's always jabbering but rarely says things we can understand). I think he's just taking his time, but his pediatrician wants to keep an eye on his verbal skills so I guess we'll see. He's a little tough guy- he falls all the time, but it really takes a lot to get him crying about things, and even when he does cry it usually doesn't last long. He's very tough about stuff like that, and I've actually heard that's common among gastro babies because they went through so much when they were infants. He's perfect.<br />
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On July 14th, 2010 I gave birth to a beautiful little girl, Scarlett Isabella! She was 8 lbs, 13 oz and 21 inches long, and absolutely perfect and healthy. I went all-natural with NO drugs or anything, and yes it hurt, but it was over really quickly (4 hours total in labor), and I would definitely go natural again! It was an amazing experience. Bringing home a newborn was new for Rick and I, because Dominic was almost 3 months by the time he came home. Scarlett was exactly 3 lbs and 3 inches bigger than Dominic at birth, and she's a chunk! It's so strange because I had one teeny tiny baby for so long, and now a big ole chunky monkey- she was in the 94% for weight at 6 weeks, haha. Now Scarlett is about 3 1/2 months and she and Dominic just love each other to pieces. He's so sweet and loving with her and always gives her kisses and hugs. If she's fussing, he'll go right over to her and pat her head or belly, or try to rock her bouncy seat, or just try to help in general. Sometimes his efforts lead to him squishing her a little bit, but he's never intentionally hurt her. In fact, the few times he's accidentally hurt her and made her cry, he starts whining and crying and looking at her- he gets really concerned about her till she stops crying. It's so sweet. And Scarlett just smiles and smiles at him, and everyone else. She's the happiest, smiliest baby ever and I love it! I spend large parts of my free time just talking to her and making goofy faces because it's so rewarding to get that smile from her. <br />
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Kids are healthy, husband is happy, I couldn't ask for more. <br />
Thanks for reading!<br />
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StephanieHisMommyhttp://www.blogger.com/profile/05448511533056237782noreply@blogger.com2tag:blogger.com,1999:blog-8514229823504551829.post-20621390812586648322010-04-24T12:02:00.000-07:002010-04-24T12:28:11.910-07:0014 months today!Hello! Today Dominic is 14 months old! He's been walking since 12 1/2 months, and is almost running now! He loves to walk everywhere he goes and has mastered getting to a standing position from the floor. He used to have to crawl over to something (coffee table/me/a toy) and pull himself up, but he doesn't need that anymore =). He's such a big boy. He says "Yeah", "mmmm", "mama", "dada", and a whole lot of gibberish. He talks constantly, but only he knows what he's saying! He eats regular food, drinks whole milk from a sippy cup, and has started deciding that he does and doesn't like certain things. When he's done drinking from his sippy, he immediately throws it on the floor. We're trying to teach him not to do that, but so far no luck. He loves to feed himself- if I give him a bite of something, he'll usually take it out of his mouth so he can put it back in himself. It's so funny to see him test out his independance with different things. If we're in the house he won't hold my hand to walk somewhere, but once we're somewhere else I can hold his hand without a struggle. He's still the happiest little guy. He's so content and happy- he makes it easy on us! He'll sit and play by himself and be perfectly happy. I sit down with him to play, but he usually just takes my toys and plays by himself with them. <br /> I'm now almost 29 weeks pregnant with a little GIRL! I'm in my third trimester and am totally feeling pregnant. I can't complain, though- aside from back aches, heartburn, and getting exhausted, I really do have it easy. I get a lot of Braxton Hicks contractions but they don't hurt. Rick and I are enrolled in Bradley Childbirth classes- which is an all-natural, drug-free birth plan. I want to experience birth how it was meant to be! I want to do it like women have done it for thousands of years, and how animals continue to give birth. God created women to be able to give birth, and technology and medicine has taken that away from us in a lot of ways. I'm excited to meet this little girl, but at the same time I'm totally nervous about have TWO kids, especially two under two! Dominic takes so much time and energy as it is and I just don't know how I'll manage with a newborn as well as him. I know people do it all the time, and I know we'll be able to do it- I'm just nervous about it. I don't want Dominic to feel neglected at all or get less love and attention, so we'll just have to step up our game when she gets here! <br /> We're moving to Pennsylvania and buying a house in June- and I'm due in July, so while it's very exciting it's also very stressful! <br /><br />Thanks for reading =)<br /><br />StephanieHisMommyhttp://www.blogger.com/profile/05448511533056237782noreply@blogger.com3tag:blogger.com,1999:blog-8514229823504551829.post-27071640542981297412010-01-18T07:48:00.000-08:002010-01-18T07:59:06.400-08:00Time Flies When You're Having FunHello All! I've finally come back to continue my last post =). Dominic is almost 11 months and has been crawling since shortly before 10 months old. He is a SPEED DEMON! It's so funny- he crawls away from us, and when I walk behind him or call his name, he turns around to look, smiles at me, and then takes off even faster! It's as if he's saying "I'm outta here, Mom!". It's just too cute. He's still not saying 'Mama' yet... he says "Dada" all the time but still doesn't put meaning to it, so I don't consider it a first word ;). He's learning all sorts of new things- it's so cool to see him learning that if you push this it makes a sound, or if you turn that, it lights up... stuff like that. He sits and plays with his toys and is still the happiest baby I know. He's cutting his 3rd and 4th teeth now! It's the top two and he's handling it really well- not cranky about it at all! Rick, myself, and Dominic are all fighting a yucky cold right now and it stinks! But- I was reading something on babycenter and it said to expect your baby to get between 8 & 10 colds before his 2nd birthday, and this is his first real one... I think we're doing pretty well! I ordered his first birthday supplies- I'm really excited about him turning ONE and having a nice party for him... I just can't believe it!<br /> Baby #2 is going great as far as we know! I'm now 15 weeks and feeling wonderful! Knock on wood, but I have relatively easy pregnancies as far as morning sickness and symptoms go! I felt awful from about weeks 6 to 9, but since then it's been pretty smooth sailing :). We had a bit of a scare when at my 12 weeks appt they couldn't find the heartbeat with the doppler, but the next day at the ultrasound showed a moving baby with a beating heart. Until we know the sex, I can't really decide on any decore, names, or anything like that, so we're really anxious to know!<br /><br />Thanks for reading, everyone!<br /><br />StephanieHisMommyhttp://www.blogger.com/profile/05448511533056237782noreply@blogger.com0tag:blogger.com,1999:blog-8514229823504551829.post-26641974278823796532010-01-01T07:15:00.000-08:002010-01-01T07:18:52.651-08:00Ringing in the New Year with a New Bundle of Joy!Most of you already know this, but Rick and I are expecting our second baby! Dominic has been doing so well and has been cleared from any specialists for a while now and we want them close in age, so we started trying! Just like with Dominic, we were pregnant the very next month and I am now 12 weeks along! I've decided to keep this blog going instead of starting a new one, and I'm just going to continue updating about Dominic, and of course info on the new baby too! ...Dominic just woke up, I'll finish this later.... =)HisMommyhttp://www.blogger.com/profile/05448511533056237782noreply@blogger.com3tag:blogger.com,1999:blog-8514229823504551829.post-61239811531352982712009-12-08T17:46:00.000-08:002009-12-08T17:58:04.548-08:009 months and counting...Hello, we just had Dominic's 9 month check-up and he now weighs 17 pounds!! How exciting! It's taken him so long to put on weight, but I still can't believe he's this big... funny how that works. He doesn't crawl- he scoots on his tummy and has been doing that since about 8 1/2 months. He's really fast, too! His favorite things to go for are dog food or water, dog toys, the entertainment center, and the Christmas tree. He's learning so much and making more sounds with his mouth- still the dada's and baba's and now gaga and yaya... still no MAMA! He's playing with his toys more and actually learning to take them out of a box- very exciting :). He has just started sleeping through the night, too- FINALLY! He's done it for the last few days and I really hope it sticks. He's also falling asleep on his own now instead of me rocking him to sleep. The Doctors say they need to be able to do this so I had to start letting him, haha- but I still rock him sometimes for naps. We're coming up on his very first Christmas and man is he getting spoiled! I tried not to buy a lot of toys for him because I know family is getting him stuff- but I still ended up buying him quite a few things. I don't know where I'm going to put everything! <br /> His tummy is doing well- his herniated belly button is getting better as he grows. He still spits up, but not as much as before. He's eating more and more solid foods which help him to keep it down. <br /><br />Thank you all for the continued love and support!<br />StephanieHisMommyhttp://www.blogger.com/profile/05448511533056237782noreply@blogger.com22tag:blogger.com,1999:blog-8514229823504551829.post-61434513115103938422009-10-11T05:19:00.000-07:002009-10-11T05:40:15.658-07:00Green Beans, Carrots, Bananas- Oh My!I apologize for taking so long to update you all, but I come bearing good news. Dominic had his high risk NICU check up at 7 months old; it's a developmental check up to see if he needs additional follow-up. There was about 7 different types of doctors in there and they sat down with Dominic on the floor to check his development. They offered him toys and watched how he moved himself and grabbed things and used his mind. Guess what- they placed him at 8 to 9 months in most every area of development! I could not be more proud of my little guy! After all he's been through, the 2 1/2 months in the hospital, and the broviac in and everything- he's ahead of the pack! My heart swells with pride =). He's the happiest little guy and wakes up smiling. He loves new people and makes friends wherever we go- in fact the other day at Panera Bread, two separate older ladies asked to hold him (I let them... they looked harmless, although it was a bit odd to get that request from strangers). He sits up on his own for a long time and he plays with his toys. He talks to us all the time, making his "baa baa baa" and "dadada" sounds. Too bad he doesn't say "Mama" yet, but he'll get there ;). We have switched his formula to a 'normal' one that you can buy in the stores- not even a sensitive one! He's also been eating baby food twice a day- we're still going through the stage 1 foods but I think he's ready for stage 2's. He loves to eat the food and gets really excited when I put him in his high chair because he knows that he eats there. Since changing his formula and giving him baby food his poops have become NORMAL!!! They used to be watery squirts of bright green or yellow, and now it's actual baby poop! Also, his prior poops would always give him diaper rash and now he doesn't get it nearly as often. He's not real interested in crawling yet, so he rolls to move around.... but he's such a content baby that he just stays put for the most part... I wonder how long that will last... <br /> He doesn't have any appointments with his GI (gastro) doctor lined up and won't unless we run into problems. He doesn't need developmental follow-up, and we are now just on a regular schedule of appointments with his Pediatrician! Thank you all so much for your prayers and support- It seems we've come out of this relatively unscathed. Also, we finally got the paperwork sorted out and recieved the money back from the military that we had paid out the whole time we were in the hotel! Such a relief!<br /><br /><br />God works miracles, you can see it in my little boy's eyes. Thank you all.HisMommyhttp://www.blogger.com/profile/05448511533056237782noreply@blogger.com0tag:blogger.com,1999:blog-8514229823504551829.post-61063815311544555832009-09-01T19:05:00.000-07:002009-09-01T19:22:45.286-07:00Teething, Car Accident, and 6 month check-up... in that order!*Sigh* As you may have read in my subject line, Dominic is teething. We haven't spotted any of those darling pearly whites but let me assure you of aomething: they're coming, and they must be upset about something. Our poor little Dominic who is usually so content and happy is fussy, inconsolable, and no longer sleeping through the night. Someone get me the Tequila. My little angel has become an angry little man, and I can't say I blame him. I just can't wait for those teethies to come in and give us a break! Moving on... Yes, we (I) got into a car accident. Yesterday I was driving to his 6 month appointment and a SCHOOL BUS (yes you read that right) merges right on over into me. I slamed the breaks and honked to no avail... they side swiped me starting at my Drivers side door on up. The door now has opening issues, as I like to call it. They didn't use their turn signal or warn me in any way that they were about to head on over to my spot in the right lane, so I'm hoping (and almost positive) that the insurance companies will side with me. UGH. On to the important part; no one was hurt, it wasn't a jarring crash and Dominic didn't even notice that anything had happened. So that's something new to deal with.<br /> The exciting part- Dominic's 6 month appointment went really well!! He's on track developmentally and the Doctors are so pleased with how well he's mentally and physically developing! He now weighs 12lbs, 8oz and is 24 1/2 inches long! He's still not on the growth chart but is gaining and growing well so they're not concerned. Also, we got the go ahead to start rice and baby foods! I'm so excited that this is an option for him, and I bought his very first box of rice cereal today, I'm going to try it out tomorrow ao I'll have to post pics of his first time eating from a spoon =). It's just amazing that he's able to start at least trying solids, and at 6 months it's not even delayed! For a while the rice and baby foods aren't going to be as important nutritionally as they will be developmentally, so he'll be learning some different ways to use his mouth. <br /><br />Thank you for reading, and for your continued love and support- I hope you are all doing very well =)<br /><br />Stephanie&DominicHisMommyhttp://www.blogger.com/profile/05448511533056237782noreply@blogger.com2tag:blogger.com,1999:blog-8514229823504551829.post-49699909433167304922009-08-19T13:11:00.000-07:002009-08-19T13:21:42.208-07:00ER last nightHello,<br /> Everyday I flush Dominic's broviac line twice with saline and heparin solutions. Yesterday after we changed his dressing on it, I started the saline flush and at the top where the tube comes out of his skin, fluid started leaking out! It was pinkish in color which I think means it's a mixture of blood and the saline solution. So we took him right to the ER- you don't want to mess around with these things... eventhough it wasn't a lot of fluid leaking, nothing should EVER come out of that hole, so it was worrisome. I didn't know if the line was loose and slipping- if that thing slipped all the way out we would have a very serious situation on our hands because it's in a central vein which means he would bleed... a lot. So anyway, we took him in and they looked at him and took an x-ray. They said it was a bit displaced but offered no reasons for the leak. We had a follow-up appointment today where they looked at him again and at the x-ray and basically said it was ok to leave it in until Monday, which is his already scheduled date to get it out. Still no explaination for the leak. Dominic is feeling fine and happily eating and playing, so he's not in any pain. Please just keep him in your prayers for his upcoming surgery and that the line stays put until then!! I'm going to try to continue Heparin flushes but if it's leaking I don't know how beneficial it is to try the flush. The Doctor today said the line wouldn't clot off without the flush, but I've been told differently from medical providers before. I'm hoping no blood clots form before Monday. <br /><br />Good news is, Dominic now weighs 12lbs 3oz. He's still a little guy but putting on weight little by little. Thank you all for your love and support!!<br /><br />Stephanie&DominicHisMommyhttp://www.blogger.com/profile/05448511533056237782noreply@blogger.com1tag:blogger.com,1999:blog-8514229823504551829.post-56624608019033281902009-08-03T06:16:00.001-07:002009-08-03T06:32:42.177-07:00Surgery on August 24th!Helllloooooo! I know it's been a while since my last post, but no news is good news, right? In this case that's true =). Dominic has been doing so well and keeping his food down wonderfully. Of course he spits up still but he's gaining weight and growing so we're happy. He hasn't had anything running through his broviac line in about a month so I just flush it twice a day and that's all! It's so nice not having to carry around those bags and change out all the lines every day! On the 24th of August they are pulling the line out!!! This is so awesome and he's just making so much progress- we're so proud of him! After they pull the line it will be another weight lifted off of us because then we don't have to worry about it getting infected. Dominic's off of all the medicine- no more reglan OR prilosec, and he just takes a multi-vitamin and iron. It's just amazing that by 6 months he'll be without any broviac and no medicine- he's such a trooper! We still have hurdles- he's still on the very basic formula, Pregestimil. We will eventually wean him up to eating something less broken down and try to incorporate rice and other solids into his diet. He is taking a couple bottles of breast milk a day though, and does very well with that. <br /> Dominic can roll totally over, he's working on sitting up, and his legs are so strong and hold him up standing for a long time! His balance just isn't up to par, but he's got plenty of time to work on that. He loves playing with his toys and his favorites are Mr. Moosey and his crinkle book. He laughs at us when we make funny faces or noises and he really cracked up yesterday when I coughed. Who knew? haha. Also, he's recently found his feet and is trying hard to get them into his mouth- not quite there yet =). He's getting more and more vocal and 'talking' to us and he has the sweetest little voice. It's such a joy to have him here with us and we're loving every minute of being parents. <br /> Thank you all for your continued love and support and pray that his surgery goes well on the 24th!!<br /><br />StephanieHisMommyhttp://www.blogger.com/profile/05448511533056237782noreply@blogger.com0tag:blogger.com,1999:blog-8514229823504551829.post-41578582279488606562009-06-30T04:43:00.000-07:002009-06-30T04:45:14.771-07:00Episode 1<object width="425" height="344"><param name="movie" value="http://www.youtube.com/v/J3TE5H0UrI0&hl=en&fs=1&rel=0"></param><param name="allowFullScreen" value="true"></param><param name="allowscriptaccess" value="always"></param><embed src="http://www.youtube.com/v/J3TE5H0UrI0&hl=en&fs=1&rel=0" type="application/x-shockwave-flash" allowscriptaccess="always" allowfullscreen="true" width="425" height="344"></embed></object>HisMommyhttp://www.blogger.com/profile/05448511533056237782noreply@blogger.com2tag:blogger.com,1999:blog-8514229823504551829.post-31063989807785331702009-06-25T03:35:00.000-07:002009-06-25T03:46:02.271-07:00zzzzzzzzzzz'sDOMINIC SLEPT THROUGH THE NIGHT FOR THE LAST 2 NIGHTS!! Ok, sorry for yelling- I just had to get that off my chest. !! . I'm here to give a HAPPY update about Dominic, which is so refreshing!<br /> He's been allowed to eat 4 oz every feeding for about a week now and has been doing really well with it! He doesn't always eat it all which is nice that he gets to eat until he's full; that's new for him! He's still on antibiotics until tomorrow for that line infection so even though HE's sleeping through the night, I'm not because he needs a dose every 6 hours.... but at least I know he can now haha. Since he's on full feedings, He's no longer getting TPN & Lipids through his broviac- just IV fluids to keep it open in case he needs to go back on the nutrition, so hopefully they can pull that soon!<br /> He's now off the Reglan- that's the medicine that I haven't been comfortable with since they started him on it and it's been 3 times now that his foot will vibrate (tremor) all by itself. The first time I saw this I stopped giving him the Reglan because it's known to have neurological side-effects and I don't want to take any chances. I talked to his Dr. and told him about it and he agreed that we should wean down on it. Psh- I just took it away altogether. Since then, he has been spitting up a bit more, but nothing to be concerned about and he's still keeping down the vast majority of his food, so I'm not worried.<br /> Dominic is now talking! Ok so he's not forming words of course but he's becoming more and more vocal and it's just so cute! =) He'll look right at us and talk to us, or to strangers... whoever will listen I suppose... but it's very cool. Also, he's grabbing at his toys more and holding onto things, and really figuring out how his fingers and hands work. He's really great at grabbing onto hair and pulling it let me tell ya!<br /><br /> OK I'm going to go get ready for my day while he's still asleep.... Thanks for reading and please continue prayers that he keeps doing well and has no set backs!!<br /><br />StephanieHisMommyhttp://www.blogger.com/profile/05448511533056237782noreply@blogger.com2tag:blogger.com,1999:blog-8514229823504551829.post-9050516100293575782009-06-14T06:33:00.000-07:002009-06-14T06:48:00.041-07:00Line Infection*Sigh* On Tuesday Dominic felt warm to me so I took his temp in the afternoon and it was 100.9. Rick and I were debating on whether to take him to the ER or not because it didn't seem too high to us, but on all of our paperwork from being discharged from the NICU, it says if he has a temp of 100.4 or higher to take him in, so we went. In the ER they took blood labs and checked him out and then sent us home with a follow up appt for the next day. So Wednesday I take Dominic back to the hospital for his follow up and everything looks fine- keep in mind this whole time he's acting totally fine... smiling, staying awake, eating, and pooping... normal stuff. So far the labs were negative for any bacterial growth and they send me home with some tylenol in case a slight fever pops up again. As I'm pulling onto base the Dr. calls and says the blood cultures have now grown something and we need to come back for a dose of antibiotics. Back we go (this is a long, annoying drive straight through DC- ugh). We get his dose and they take more blood to make sure this really IS an infection.. he's acting so happy and well that they think there was a contaminate and he doesn't really have an infection. We're scheduled for a follow up the next day for his second dose of antibiotics and to see what the lab results say. Thursday I take him BACK to the hospital and they get the results: positive. Dominic definitely has a line infection, and they want to admit him. We spent Thursday and Friday nights in the hospital for his antibiotics and let me tell you, never go to a hospital to try to sleep. It's ridiculous that Dr's even tell you to rest and try to get better when you're there because it's impossible. Now we're home and his home nurse came last night to show us how to administer his antibiotics through the line here at home. He's supposed to be on them for 2 weeks if that last blood culture was negative.<br />Moral of the story??: If my baby has even a slight fever I need to take him in, especially with this hardware in his chest.<br /><br />On a happier note, at last weigh in Dominic weighed 9lbs 4oz, which is AWESOME!! His Dr. also upped his feedings to 3oz every 3 hours, which is making Dominic happier and life at home a bit easier now that he's not as hungry all the time! Also, we're weaning down on the Reglan and te TPN, with the hopes that in the next 2 weeks we might be able to pull the broviac out all together! That's optimistic thinking and will only happen if everything goes perfectly, but it's still a light at the end of the tunnel.<br /><br />Please pray that Dominic keeps tolerating his feedings, that the infection goes away, and that we can get him off all this medicine soon! Also, the antibiotics give him diarreah so let's pray that it doesn't get too bad for him- we need him to absorb his food and nutrients!!! Thank you all!!<br /><br />StephanieHisMommyhttp://www.blogger.com/profile/05448511533056237782noreply@blogger.com2tag:blogger.com,1999:blog-8514229823504551829.post-91666274452942197762009-05-29T12:00:00.000-07:002009-05-29T12:17:36.606-07:00Home with the BabyDominic has been doing very well keeping his food down and having regular poopies =). He is hungry sometimes because he's still on the 45-50mL every 3-4 hours, but for the most part he seems pretty content. His little face is filling out more and he's just getting cuter and cuter! He's growing out of the newborn sized clothes and is now in the 0-3 month clothes which are still a little too big on him. One thing that worries us is his choking! He gets reflux and eventhough we keep him inclined, sometimes he starts flailing his arms and gets a terrified look on his face and then makes these terrible little choking sounds.... so we of course run over there and tilt him forward and pat him on the back and then he starts crying ad breathing again. It's VERY stressful and worrisome and it's hard to try to get any sleep because we're just always worried that he's going to choke on his own spit up and we won't be there to help him. I asked his GI Dr. about this and he said that reflux babies sometimes do this.... that doesn't ease my mind though.<br />Other than the choking, Dominic acts like any other baby- just smaller! He can roll from his tummy to his back and will sit upright leaning against us. He likes to watch everything- the TV, us, other people, the dogs, a fan.... he just looks like he's learning from everything he sees. We were at the mall the other day in the food court and Dominic just sat on my lap while I ate and he watched everyone, it was so cute. We have another appt with the GI Dr. next week and hopefully we can cycle his fluids so we don't have to carry it around all the time, and hopefully he'll also up his feeds- I don't see why he wouldn't with Dominic doing so well. We'll see!<br /><br />Thanks for your continued support and continued prayers!!<br />StephanieHisMommyhttp://www.blogger.com/profile/05448511533056237782noreply@blogger.com1tag:blogger.com,1999:blog-8514229823504551829.post-52414602146464053982009-05-20T13:31:00.000-07:002009-05-20T13:45:05.531-07:00Mr. Dominic is HOME!!Welllllll- as you can see from the title, Dominic is home! He came home on Friday, May 15th and has been doing pretty well! He had a Broviac put in and has a small amount of TPN & Lipids running all day to keep his nutrition up since he's not eating full feeds. He's taking 45-50mL every 3 to 4 hours of Pregestimil and he seems to be doing well with it, eventhough sometimes he's hungry. We're still not out of the woods though- where his broviac comes out of his chest has been a bit red and today at the doctor appt, they took a skin culture to see if anything (infection-wise) is growing there. It's pretty worrisome to have that line in there for that exact reason- infection. It's a central line close to the heart so any infection at all can turn into a full blood infection very quickly. Please pray that #1) he doesn't have and will not get an infection, and #2) that he doesn't need the broviac in for a real long time so we can eliminate that risk completely.<br /> Dominic tends to confuse his days and nights which makes Rick and I pretty darn tired, and the past couple days he's been more cranky- along with the fact that he's had a temp of 99 yesterday and today... like I said- hopefully not an infection but if it is one, pray for good antibiotics and a strong immune system!! His favorite part of the day seems to be in the morning around 5 or 6 am; he'll smile and play and let you talk to him and just be very content. There's a couple other parts of the day he's like that too but for the most part he's sleeping, eating, or crying- just like any other baby. We're trying to do a little tummy time each day but it doesn't last long because he starts to get upset. Oh well, I'll keep trying!!<br /><br />Thank you all so much for all the love and support- I'm going to keep updating this blog, so stay tuned if you're still interested! We still have work ahead of us!!<br /><br />StephanieHisMommyhttp://www.blogger.com/profile/05448511533056237782noreply@blogger.com4tag:blogger.com,1999:blog-8514229823504551829.post-43195292459997188082009-05-10T06:30:00.000-07:002009-05-10T06:34:30.513-07:00take me up, take me down, now spin me around...Hey guys, sorry I didn't update you- we've been going up and down a lot with Dominic lately-<br /><br />So the Doctors still don't know why he got those fevers- never found an infection. After that he was doing well again and moving up on feeds and was all set to come home on Thursday the 7th of May. On Wednesday night he started spitting up a little green, but since he was still pooping (although it was a little loose) they were still going to let us take him home. While I was there feeding him, Rick was at the Parmacy picking up his meds and we had the carseat up there and everything... Dominic started projectile throwing up green. I just sat there trying to calm and clean him and tears started running down my face. I thought, here we go again. This is the third or fourth time we've been ready to take him home and he has to start all over again. Needless to say, Dominic didn't come home with us. They stopped his feeds cause he was just throwing it all up, and put in an IV for fluids. Since he's been stuck so many times, his veins are all used and no good anymore for IVs, so it was in his head. Friday when we went in, the Doctors took us to the conference room to tell us that it would be best to put in a Broviac (a surgical IV catheter put in through the neck and out the chest)so that he has a more permanent way of getting nutrition. His intestines just aren't mature enough to handle a full load of food, so we have to rely on TPN as a fall-back now. I really hoped we could take him home and just feed him, but we'll have to wait for that. At least with the Broviac in, he can come home on TPN and bottle feeds and we can take care of him here. So that's where we are now- they're going to work him up to a reasonable amount of food without pushing it, and the rest of his nutrition will be from TPN. It's not an ideal situation, but at least this way he's not getting dehydrated and malnourished every time his intestines can't handle his food. Hopefully this way will help him grow nice and big so his intestines can sort themselves out a little more. Please pray that he doesn't have to stay on TPN for a very long time; I don't want his little liver to suffer...<br /><br />Thanks everyone!<br /><br />StephanieHisMommyhttp://www.blogger.com/profile/05448511533056237782noreply@blogger.com3tag:blogger.com,1999:blog-8514229823504551829.post-79691527627404518432009-04-30T06:55:00.000-07:002009-04-30T07:13:55.299-07:00Pregestimil to the rescue?Dominic is now up to 60mL every 4 hours with Pregestimil. It's a VERY broken down formula that is easier for babies to digest and he seems to be absorbing it better. Along with the formula, he's on a medicine called Reglan... it's to help his stomach empty faster into his intestines which is where the absorbing occurs. They put him on this because he threw up his feed once... I googled Reglan and am NOT impressed. There's a whole slew of side-effects and I'm not even positive he needs it, but I'm going to just go with it for now. When he busts out of the NICU I'm going to ask his GI Doctor to take him off and we'll see how he does. I hate giving him meds.. there's so much that can go wrong, especially when babies are given meds so young- it can really affect them. He's also on Prilosec to help with the reflux that's generally associated with Gastroschisis babies. That's another one I'm going to try to get him off of as soon as possible. If he truly needs it then fine, that's best- but if the benefit doesn't outweigh the drawback for him, I don't want him on the meds. Anyway, his poops are looking a little more formed, although not quite what a normal baby's poop should look like. That one throw up was the only one so far with this formula- he's keeping it down pretty well, so that's a huge relief!<br /> The other night Dominic got a fever of 101.3 so they ran alllllll those tests again (blood, urine, spinal fluid) to see if he had an infection. Babies don't really get fevers unless there's an infection- it's the body's way of fighting off an infection by raising the temp. This has happened twice before with no sign of infection... and so far the tests are showing the same thing: no infection. This is good and bad because it's nice that he doesn't seem to have any infections, but that makes us wonder where the fevers are coming from. If they found an infection, they could treat it and that would be the end of it (hopefully). The Doctors are brainstorming as this confuses them as well... throwing around ideas that maybe he does have an (invisible?) infection, or maybe he just gets random, unrelated fevers. The latter is actually a "diagnosis" but I Think it's just a Dr's way of saying they have no clue why someone is getting fevers. Please pray that he doesn't get any more fevers- along with the fact that a high fever can cause serious damage to a baby, I really don't want the running those tests again and poking him all over for well over an hour.<br /> The plan is to continue slowly increasing his feedings- he's almost up to a full feeding but not quite there yet. Once they see him doing well on full feedings, he can come home again. His weight had gone down to 6lbs. 12oz, but is now back up to 7lbs. 7oz, so I'm thankful for that. He needs to get some serious weight on him so he can grow longer and hopefully his intestines will straighten out more!!<br /><br />Thank you all for your support and prayers, we couldn't get through it without you.<br /><br />StephanieHisMommyhttp://www.blogger.com/profile/05448511533056237782noreply@blogger.com0tag:blogger.com,1999:blog-8514229823504551829.post-8767487647790750152009-04-23T07:23:00.000-07:002009-04-23T07:39:24.751-07:00breaking point.Where do I even start? We did room in with Dominic on Friday and we did take him home Saturday... only to take him back to the NICU early Sunday morning. He was still having diarreah and looking more dehydrated and then I noticed he was more tired than usual and felt warm so I took his temp and it was 99.7. I called the NICU dr's and they told me to bring him in just so they could take a look at him. When we got there they took his temp and it was 100.2 so they checked rectally and it was 101.7. They admitted him right away. That day they ran a million more tests and didn't let him eat anything to give him 'bowel rest'. Monday they gave him 30mL every 3 hours and he was doing really well with that. The GI (gastrointestinal) Doctor came to see him and said they would test more to see if he has 'dumping syndrome' which is basically his intestines not absorbing his food, so it comes out as fast as it goes in. This is also giving him horrible diaper rash because it's so acidic on his skin. Yesterday they tried a formula instead of breast milk called Elecare. It's a broken down formula that's aimed towards babies with severe allergies, intestinal issues, and absorption issues. I was really hoping it would be the magic recipe to help him. They called this morning to get permission to put the PICC line back in because he was throwing up the Elecare and having more diarreah. Now he's back to being dehydrated and they couldn't get an IV in so now it's back to the PICC line for nutrition. They want to try a formula called progestamilk (sp) which is similiar to Elecare, and hopefully that will work. I'm going to ask if they can fortify the breast milk since we know he tolerates that. Fortifying it means they'll add calories to it so maybe he won't have to take such high volumes. The only issues come when he's up to full feedings and his intestines just can't absorb it all. Who knows if that's a possibility for him but I just don't know what to do anymore. To come home he has to be on full feedings and gaining weight... he can't do that if he's pooping it all out. Also, they want to start him slow, meaning at 15mL every 3 hours with this new formula, so it looks like a long haul in the NICU. I just want to bring my baby home and take care of him. It broke my heart yesterday- we had to leave at shift change and he was just staring straight into my eyes, as we walked away he turned his head and stared at us, watching us go. It just kills me to leave him there. I just want him to be ok. please keep praying that he heals and that the doctors can figure this out so he can come home.HisMommyhttp://www.blogger.com/profile/05448511533056237782noreply@blogger.com3tag:blogger.com,1999:blog-8514229823504551829.post-508383122518091672009-04-16T15:58:00.000-07:002009-04-16T16:09:25.575-07:00*cross my fingers*I'm cautiously optimistic (as are the doctors) that Dominic can come home this weekend. He's doing much better now and his appetite has returned and he's actually keeping his food in his TUMMY! He still has spit-ups and a little throw up every day, but it has improved so much =). He's looking healthier and seems happy but his soft spot is still a bit sunken in... not nearly as bad as it was, but I'm of course still concerned about it. I've pointed it out to about 4 different doctors and they don't seem at all concerned so who knows. I'm going to keep my eye on it. His poops are looking more 'normal' for a baby- less runny and more pasty which is an improvement, but they are still usually a combo of bright yellow and green. Again, Dr's aren't concerned. He was supposed to get circumsized today but the NICU got busy so they'll probably do it tomorrow morning; I sure hope so because getting that done means he can come home soon! Tomorrow (Friday the 17th) we're still supposed to room-in with him and depending on how he does he should come home Saturday or Sunday. I'm still trying VERY hard not to get too excited about this because it's twice now that he was supposed to come home and then something happened. I just hope and pray that he continues to heal and that we don't have any other issues with this (yeah right, right?)!!<br /><br />Thank you everyone for your support and please continue prayers!!<br />StephanieHisMommyhttp://www.blogger.com/profile/05448511533056237782noreply@blogger.com1tag:blogger.com,1999:blog-8514229823504551829.post-7976003581954838452009-04-13T16:31:00.000-07:002009-04-13T17:01:50.368-07:00Blood TransfusionWell... this past weekend Dominic got very sick. He was having loose stools (aka: diarreah) and was running a temperature for a could of days. I kept bringing the temperature up to the nurses and Doctors and they all kept listing all the reasons NOT to worry about it. "He was laying on that arm, that's why it's warmer" or "He was covered in blankets, that's why"... you get the idea. I brought it up a number of times and each time they had an excuse. I also brought up that he was more tired than usual and wasn't interested in eating his food. Early saturday morning he was throwing up more and having continued diarreah so the Doctors decided to run tests for viral or bacterial infections. I was at the hospital Friday night and noted to the nurse that Dominic's soft spot was sunken in, to which she said he was a little dehydrated. By the time I saw him on Saturday, he had lost all color and was so dehydrated that his soft spot was completely sunken in... I could feel all of the ridges in his skull. When I got there Saturday morning they still had not run the tests nor did they have an IV in for fluids. They decided it was time to put that in, but he was so dehydrated they had to try over and over. Poking his poor little hands with their needle. Then the Doctors decided to run their tests and they needed blood, urine, and fluid from his spinal area to test for meningitis. I tried to get the Doctor to wait to begin because his IV fluids hadn't been going for very long and he was still dehydrated- which means they would have a hard time getting the fluid from his spine and I didn't want him getting poked over and over again, but the Doctor assured me he could find fluid. At this point, we left to go eat and a couple hours later when we came back, they were preparing to try his spine again because the first attempt was unsuccessful. ARE YOU KIDDING ME?!?!?!? I'm so frustrated with this whole ordeal because it's not like I'm some idiot who's going to disregard sound medical advice. I am his mother though, and would appreciate being taken seriously. I pay close attention to him and notice when something's different and it seems no one cares to hear what I think, even though I was right in this case- I kept asking the Doctors and nurses if his symptoms were early signs of illness or infection and they kept with their "reasons" why this or that symptom was explainable... from here on out I'm going to be even more assertive about things I see.<br />Sunday Dominic looked much better, but still a bit dehydrated. His soft spot wasn't nearly as sunken in and he regained color in his skin. He also was starting to get his appetite back. The Doctor told me that he thought Dominic has a stomach virus and we're still waiting for the cultures to come back to see if he also has a bacterial infection. Meanwhile he's got antibiotics and IV fluids still going in him. This morning (Monday) I got a call from his Doctor saying they wanted to do a blood transfusion for him. Apparently when they took blood on Saturday, his red blood cell count was very low. She said that he had enough blood cells fighting his current illness but if he were to get sick again, he wouldn't have enough to help him fight it off. She made it sound like a buffer of sorts to ensure that he could heal better. Of course there are risks when getting a transfusion but if he needs it, he needs it. I know they don't just give blood to people for nothing, so it's obviously a serious situation. I'm just so exhausted with this whole thing... it seems when we get close to him coming home something goes wrong and we're there another week. He's doing better (it seems) now and has regained some appetite, but we'll see. I just hope and pray that he doesn't have any more complications and can come home soon.<br />On an up side, Dominic is now allowed to have however much food he wants, whenever he wants!! This makes him a happy boy and it works much better for him because it's not such a high volume on his tummy at a time. He's keeping his food down better now and I just hope it stays going well. Thanks for reading and please continue prayers.<br /><br />StephanieHisMommyhttp://www.blogger.com/profile/05448511533056237782noreply@blogger.com1tag:blogger.com,1999:blog-8514229823504551829.post-67271024690317874082009-04-09T08:29:00.000-07:002009-04-09T08:38:02.465-07:00Near the end of this whirl wind?Well folks, I'm here to report better news! Dominic is eating again and up to 80mL every 4 hours. He still spits up with about every feeding while burping, but I think he's going to do that for a long time. Burp cloths and bibs are going to be our best friends for a while! He seems more content now that he can eat as well, which makes me happy. They had done 2 more x-rays and by the next morning his bowels weren't nearly as dilated so they let him start eating again. More good news: we're making progress with the move here! We have our assignment and Rick has already went into his new office to meet people, and our orders are being worked right now. Just yesterday we reserved our new house!! We sign the lease next friday and I can't wait! It's so nice to know that we're not going to be in this hotel room forever and that we now have a home to take our baby to! I'm very happy with the house and the location~ we're definitely blessed to have even gotten a house and the fact that we like it and the area... just icing on the cake. Hopefully Dominic doesn't have any more set-backs and can come home soon!<br /><br />Thank you all and please keep Dominic in your prayers!<br />StephanieHisMommyhttp://www.blogger.com/profile/05448511533056237782noreply@blogger.com1tag:blogger.com,1999:blog-8514229823504551829.post-48202800614983574452009-04-05T13:34:00.001-07:002009-04-05T13:34:55.626-07:00*sigh*He was up to 70mL every 4 hours yesterday with the plan to go to full feeds today and possibly come home on tuesday, but early this morning he started throwing up and having a lot of spit ups. they did an x-ray and he has one really dilated loop. they dont know if he has an infection or what, which is the thing that really worries me... he was doing perfectly fine until this morning so i dont know what to think. theyre putting him on a 24 hr hold from feedings which really kills me because he's so hungry and miserable... i just feel so bad for him. =( please just keep him in your thoughts/prayers.<br /><br />Thanks,<br />StephanieHisMommyhttp://www.blogger.com/profile/05448511533056237782noreply@blogger.com0tag:blogger.com,1999:blog-8514229823504551829.post-13758948635204070682009-03-30T12:33:00.000-07:002009-03-30T13:02:16.468-07:00num num num MILK!Hello! I have good news to report~ Dominic has been eating his milk and the Doctors are steadily increasing the amount that he gets. He started out at 5mL every 3 hours and just today was increased to 38mL every feeding!!! This is awesome and he's doing SO WELL. He hardly spits up anything when he eats (if at all) and is pooping like a little poo-champion! Some days he goes 5 times, so all the prayer for poop really worked! The Doctor spoke with me yesterday and said that if he continues to do this well he'll be home in less than 2 weeks!!!! I'm realllllllyyy trying not to get my hopes up about this because I know that anything can happen but I'm pretty darn excited. :) He should be up to full feedings within a week and I think he's going to just keep on eating like a champ. A few things we've found out about Mr. Dominic: he LOVES to be held. The nurses are all very familiar with him and have all held him PLENTY because he will let everyone in earshot know that he wants some love. I'll hold him for hours and as soon as I set him on his bed (no matter how asleep he may be) he'll start crying and fussing again... and all you have to do is put your hands under him and lift him up and he's happy as can be again. He just wants people there lovin' on him, it's so cute. When I leave the hospital I trick him into thinking he's still being held by making his blankets nice and tight around him. I honestly don't mind- I hope he stays snuggly like this because of course I love to hold him. Another thing about Dominic- he will quickly let people know when he's upset! I know all babies cry and get worked up but all the nurses comment on how Dominic rules the roost and insists on being taken care of exactly when he wants. We've got our work cut out of us!!<br /><br />Ok I think that's all the updates for now- please keep praying that he continues to heal and that we can take our baby home soon! Oh- we heard that our application for orders has FINALLY been approved!!!! Now we're just waiting for them to find a job and a base for us, so JEEZE I hope it doesn't take a long time! Almost forgot- they took out his nose tube which sucked out bile from his tummy and he hasn't had any incidents and his weight is over 7 1/2 pounds now!<br /><br />StephanieHisMommyhttp://www.blogger.com/profile/05448511533056237782noreply@blogger.com3tag:blogger.com,1999:blog-8514229823504551829.post-42407573557506123322009-03-17T19:46:00.000-07:002009-03-17T19:55:12.474-07:00Started feeding again today!Dominic is 3 weeks old today and seems to be making more progress! He has pooped 4 times in the past few days (I think 4... Rick thinks 5, so I'm not sure)! This is so great that he's going more regularly now! His bile output has been improving and getting less of it, and it's also getting lighter in color. We're really hoping that with starting feeds today he can just keep improving and keep his food down. In my opinion, it's looking more promising now than it has before that he can continue eating, but we'll see with time. He's had 2 bottles today (5 cc's each) so far and hasn't had any vomit yet so I'm optimistic. I know it goes back and forth, and we've experienced that already so I don't want to get too excited about this, but I still do. =) He's looking cuter and cuter and getting nice and chubby so we're all happy about that. He's around 6 lbs 8 oz now so he's well past his birth weight.<br />Please keep Dominic in your prayers for fast recovery and that he'll keep pooping and for those intestines to work perfectly! Thank you so much for all the prayers and support!<br /><br />StephanieHisMommyhttp://www.blogger.com/profile/05448511533056237782noreply@blogger.com3tag:blogger.com,1999:blog-8514229823504551829.post-70010012457073843992009-03-07T17:04:00.000-08:002009-03-07T17:10:33.381-08:00Playing the gastroschisis game...Well, yesterday I was so excited because the Doctors decided to give feeding a try. Dominic had pulled out his suction tube (and smiled at the nurses while he was at it), so they just decided to leave it out. I got to give him his first bottle- very small, only 5cc's but they have to start out slow. He just sat there for about 5 minutes with the bottle in his mouth not quite knowing what to do, but as soon as he sucked he understood and the bottle was empty in no time. He did really well and didn't spit up at all with that or the next one so we were getting hopeful that he could continue. When I went in this morning they told me that Dominic had thrown up some bile and still hadn't pooped since eating, so the tube goes back in. It's disappointing but we knew this would probably happen, and that he could go back and forth with this a lot so we just have to keep optimistic about it all. Now we're just waiting for the amount of bile to slow and for it to clear in color again, as it's now back to a darker green. His intestines just aren't ready to fully work yet, but hopefully soon.<br /><br />Please keep Dominic in your prayers for fast healing so that we can take our little guy home. Thank you for all the continued support!<br /><br />StephanieHisMommyhttp://www.blogger.com/profile/05448511533056237782noreply@blogger.com0tag:blogger.com,1999:blog-8514229823504551829.post-26144496495107109912009-03-03T20:33:00.000-08:002009-03-03T20:40:44.318-08:00Making ProgressJust wanted to let you all know that today the Doctors decided to stop the suction of Dominic's bile! This is a small step forward, but I'll take what I can get! They're going to see how it goes with letting gravity work its magic and see if maybe his intestines have started working at all. Ideally he'll start pooping and the bile won't come up the tube or out his mouth, so that's what we're praying for now. PRAY FOR POOP! =) When he starts to poop regularly, they can start feeding him.<br />Also today the Doctors decided to stop replacing fluids at the 1:1 ratio that they were doing. This is because he's putting out a lot less bile than he was before, so there isn't a need to give him additional fluids.<br />Dominic has been much happier these past 2 days, fussing a lot less than that one day. Hopefully this means he's not in pain and that things are moving along as they should, so we'll see!!<br /><br />Thanks for all the continued support!<br />StephanieHisMommyhttp://www.blogger.com/profile/05448511533056237782noreply@blogger.com0