9 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!
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.

Thank you all for the continued love and support!
Stephanie

Green 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...
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!


God works miracles, you can see it in my little boy's eyes. Thank you all.

Teething, 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.
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.

Thank you for reading, and for your continued love and support- I hope you are all doing very well =)

Stephanie&Dominic

ER last night

Hello,
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.

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!!

Stephanie&Dominic

Surgery 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.
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.
Thank you all for your continued love and support and pray that his surgery goes well on the 24th!!

Stephanie

Episode 1

zzzzzzzzzzz's

DOMINIC 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!
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!
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.
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!

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!!

Stephanie

Line 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.
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.

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.

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!!

Stephanie

Home with the Baby

Dominic 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.
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!

Thanks for your continued support and continued prayers!!
Stephanie

Mr. 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.
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!!

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!!

Stephanie

take 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-

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...

Thanks everyone!

Stephanie

Pregestimil 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!
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.
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!!

Thank you all for your support and prayers, we couldn't get through it without you.

Stephanie

breaking 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.

*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?)!!

Thank you everyone for your support and please continue prayers!!
Stephanie

Blood Transfusion

Well... 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.
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.
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.

Stephanie

Near 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!

Thank you all and please keep Dominic in your prayers!
Stephanie

*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.

Thanks,
Stephanie

num 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!!

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!

Stephanie

Started 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.
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!

Stephanie

Playing 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.

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!

Stephanie

Making Progress

Just 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.
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.
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!!

Thanks for all the continued support!
Stephanie

Dominic is now 6 days old

I can't believe it's almost been a week already. It's gone so fast and yet feels like a lifetime ago that our baby was born. In just 6 days Dominic has come so far and made us so proud already, I can't imagine what's more to come. He's been doing great off the ventilator and his coloring is looking so much better. He doesn't fuss and cry unless people are poking and prodding him or he's got a reason to be mad, so we hope he stays this content! Yesterday was the first time he was crying a lot, and he would just sleep and then wake up and start crying real loud and upset and couldn't be consoled. He did that all day, and after we left from visiting him his nurse said he cried for 3 straght hours. I felt terrible and told the nurse to write it down that whenever Dominic was that upset to call me and I'd come right over to hold him. I know sometimes he'll just be upset but I'd rather be there for him than not. Turns out, the nurses and Doctors (and us) think he's just hungry and maybe has gas. Poor thing isn't eating anything yet, and while he's getting all his nutrition through an IV, nothing is going into his little belly and he just must be so hungry. We'll put the binky in his mouth and he'll suck on it real hard for a minute until he realizes nothing is coming out of it, and then he's mad again. I feel so bad for him, but there's nothing we can do to help him. His bile is still being sucked out of his tummy and today it was lighter in color (positive sign) and there's less of it (another positive sign) so if it keeps going down in volume he'll be able to start eating soon. We're not holding our breath for that, but let's just hope and pray for the best =). Today he's been much more calm and relaxed. I go in every morning by myself and hold him for a couple of hours and yesterday he cried almost the whole time, but today he slept in my arms the whole time. The nurse said he keeps pulling out his tube that sucks the bile from his tummy and they've had to put it back in a couple times today. It usually goes in his mouth but the nurse thought if she put it through his nose he wouldn't pull it out but he just wouldn't allow her to put it there. She tried 3 times and he fought her off each time. Our little fighter =). He's doing much better today and is sleeping right now, so I'm happy.

I'll update later, thanks for the thoughts and prayers!!

Introducing Mr. Dominic Alexander!

On Feb. 23rd, Rick and I went to the Doctors as usual for a non-stress test and the baby did great. Then we had an ultrasound to check his growth and the Doctor noted that he hadn't grown as much as we thought he should by that point. She suggested we should induce which we were totally fine with- she checked with the NICU, labor and delivery, and the surgeon and everyone was on board, so off I went to get checked into labor and delivery! I got all hooked up and they checked my cervix... I was only at 1cm and my cervix was "long and hard" which meant it wasn't ready for labor. They gave me some medicine to get me ready and then we waited. Next time they checked me I was only at about 2 so they put in a foley bulb and gave me pitocin and within a couple of hours I was at 4cm! This is about the time I requested my epidural... getting it in wasn't a pleasant experience but SO WORTH IT. I don't understand why someone would want to be in that kind of pain without drugs. =) They checked me 2 hours later expecting me to be about 6cm and I was 10! My cervix was totally ready and the baby was down and in position! We woke Rick up and he hopped right up and was by my side =). They got the room ready and then after just 14 minutes of pushing, Dominic Alexander came into the World!

He weighed in at 5 lbs 13 oz and 18 inches long and simply beautiful. I only got to see him for a minute before they took him for surgery. The surgery lasted less than an hour, and eventhough he had a lot of intestines out they got everything back in and closed him up. This put a lot of pressure on his little lungs so they had to put him on a ventilator for the first day after that.
He's just making so much progress and is now off the ventilator and breathing on his own. His bile that's being sucked from his stomach is still green and we're waiting for that to run clear. The day after the surgery his tummy was all red and looked like it was getting infected but it's looking much better now. They have him on antibiotics so hopefully there aren't going to be any infections.

He was getting really cranky the other night because he was in pain so now instead of waiting for him to be in pain and giving him narcotics, they have him on a system on tylenol which helps keep the pain away. It's just so heart breaking to see the little guy squirm in pain, I hate it =(.

He just got his PICC line yesterday which will give him more nutrition and hopefully stop him from losing so much weight... he's already down a pound, but the doctors aren't too concerned yet because he's basically peeing out his weight in the swelling that was in his bowels so it's kind of a good thing.

We've gotten to hold him a bit, and I was there for a couple hours last night holding and rocking him, it was wonderful.

So far so good- please pray that his bile runs clear, that he's pooping, and that he's not in pain and recovering well. Thanks so much and we'll keep you updated!

Hopefully this week!

I'm now 38 weeks pregnant, and at the last Dr. appointment she said that if this baby doesn't come by 39 weeks and we want to induce, that they would do that. We go in today for a non-stress test and have a growth ultrasound to see how he's growing in there and how big he is. I also want to try to set up a date to induce, so I'm hoping to do that! We are more than ready to meet our little guy! I'll update later on what we find out today! =)

No amnio =(

Well, we went in yesterday to get the amnio done and the Doctor couldn't find a good pocket of fluid to draw from. Either the placenta was in the way, the intestines, or some part of the baby was just too close for comfort. She sent me on my way with orders to drink a ton of water, and to go to Labor and Delivery at 5:30pm to try to get the amnio done with another Doctor. The hope was that the water I was drinking would increase my fluid level, and that the baby would move into a better position. After waiting for hours to see this Doctor, he couldn't find a good pocket either, so no amnio was done. I am very disappointed. I should know better not to get my hopes up about this kind of stuff, but I was really ready to be in labor right now, instead of waiting to talk to the Doctor again to see what's next. I'm supposed to call back later today to see what she says, but she didn't seem real supportive of delivering at 37 weeks and I might have to be insistent. We just don't feel comfortable letting the baby stay in there with all his intestines and his stomach outside his body, because the longer that's in the amniotic fluid the more opportunity for damage there is. I don't want his bowels getting kinked or dilated if we can safely deliver instead. 37 weeks is full term and I plan on insisting to be induced soon. After 37 weeks you don't have to have an amnio done, so hopefully we can just set up a date to be induced. *sigh* It seems every step of the way, something has to come about and make this more difficult.

Please continue to keep us in your thoughts and prayers, thank you all for the support and love thus far.

Stephanie

News from the OB today

We went in to see the high risk OB today for a follow up ultrasound and the baby is measuring at 5 lbs. 2oz. That's a measurement taken with his smaller stomach size, so he's closer to 5 1/2 or 6 lbs.!! Can you believe that!? Everything looked good except now not only are his bowels outside his tummy, but so is the stomach. The Dr. says this isn't going to affect delivery or his surgery, and shouldn't affect his recovery too much. Of course it makes us worry more, but we're still hoping for the best. The procedure will still be the same- the baby will be born and his lower half placed into a plastic bag so that he doesn't lose heat and hydration. When he's stable the surgeon will place the contents back into his stomach as much as possible, and whatever doesn't fit will be placed in a silo. A silo is basically a plastic tube that is hung above his belly with the intestines in it, and every day a bit of pressure is put on the intestines to get them to go into his body. This usually takes a few days to a week. Another thing the Dr. saw is that his bowels are now a bit more dilated than last time we checked. More dilation equals longer recovery time for our little guy, so now we decide that early delivery is best. The head surgeon is out of town from Feb. 6-11 so we'll be doing an amnio on the 11th to check for lung maturity, and if his lungs are ready, we will induce on the 12th. An amnio is when they stick a needle into my abdomen and take a sample of the amniotic fluid from the uterus so they can check protein levels, which will tell how his lungs are doing. So as of now, we plan to induce on the 12h of Feb. and he'll be born soon after that! Please keep us and our baby boy in your prayers so that his surgery and recovery go perfectly. If his lungs aren't mature enough then, depending on the level of maturity, we will either just wait a week and induce, or wait a week and do another amnio. We're hoping that his lungs work perfectly so that we can get him out of there and into surgery.

Thanks everyone, I'll keep you posted!

Hanging out at the Hotel

Well, Rick and I are taking it pretty easy here in Maryland and spending a lot of time at the Hotel...aka: home. We go twice weekly for NST (non-stress tests) which is where they lay me on a bed and strap on 2 devices: one measures the baby's heartbeat and movements, and one measures any contractions I may be having. He's passed all his tests so far, which means that he's 1) moving around, and 2) when he moves, his heart rate goes up and then back down when he's still. They measured my fluid levels today and I'm at 9cm. What I mean by this is my amniotic fluid- gastro babies tend to have lower fluid levels because the exposed intestines soak it up (which in turn irritates the intestines). It's bad if my levels are at 5 or below, so there's no concern in that department right now. If I were at a 5 or less, they may hook me up to IV fluids, put me on bedrest, or induce labor. It all depends on all the different variables at the time. I have my next OB and ultrasound appointments the first week of February where they'll check the growth of the baby and see if the intestines are dialated, which would be bad. I tried to get a sooner appointment but the Dr. insisted that she needed the 3 weeks (in between appt times) to check for growth, so I'll just have to deal.
I'll keep you posted if anything new comes about!

Ultrasound photos

Playing Catch Up

My husband Rick and I decided to buy a 3-D Ultrasound to be able to get some good pictures of our baby boy, and hopefully see what he looked like. I made an appointment for when I was 31 weeks pregnant and we went in to get it. We were really excited about being about to see his little face, but the Doctor couldn't get a good view of it. Something was up in front of his face along with his umbilical cord, so the Doctor started looking into what it might be. He measured the baby's head, legs, and stomach and found that his stomach size was 2 weeks behind the other parts of his body. This led the Doctor to believe that our baby has Gastroschisis, which means his intestines are growing outside of his body. This explains why his little tummy was measuring 2 weeks smaller- there's no reason for it to grow at a normal rate when everything isn't in there forcing growth. The Doctor gave us a referral to a specialist in the area (we lived in Germany, stationed at Ramstein AB) and we went right away to the ER at our military hospital. We soon had appointments with our military Doctors and German Doctors and quickly found that the initial diagnosis was correct. Now it was time to take action. Seeing as I was already 31 weeks and Gastroschisis babies tend to deliver early, we needed to act fast. The military Doctors met with us and informed us that we'd get the best treatment back in the United States. Three days after meeting with the high risk Doctor on base, we were on a plane flying to Washington D.C. to be treated at Bethesda Naval Hospital; one of the best hospitals in the Country. Everything happened so fast, but now that we're here we feel confidant in the decision to send us here. The Doctors and Nurses are all very helpful and seem to really know the facts on Gastroschisis and what's best for us. Right now we live out of a hotel here on Temporary Orders, waiting for the military to cut orders giving us permission to move here. At that point, we can have our car and household items shipped here, and find a home for us here.

Now in D.C.- 15Jan09

We are now in D.C.
Alright everyone, a lot has happened in a very short amount of time. We met with the high risk Dr. on base in Germany and he set us up with the Doctors in D.C. for this friday (tomorrow). When he did that, we got the paperwork in order for us to fly out of Germany and back to the States. We had 3 days to get all of our affairs in order for us to move accross te ocean... needless to say we were beyond busy and very stressed, but we may have actually pulled it off! We couldn't have done it without the help from the doctors, a lot of people we work with, and friends of ours. We appointed a few people powers of attorney to be able to handle things that we couldn't do just yet, like sell our car and ship household goods. We have to wait for the military to cut PCS orders which will give us permission to move all our stuff here and find a house here. Until then we're living out of a hotel =(. We've got our dogs with us and they're excited to be in the States, too ;). I'll update you all more after we see the doctors here and know more!! Thanks for all your prayers and support, we couldnt do all this without you!

Update- 7Jan09

Gastroschisis Update
We went to the German hospital in Kaiserslautern (about 20 minutes from home) yesterday and the Dr. confirmed that our baby does, in fact, have Gastroschisis. She referred us to the bigger hospital in Mannheim (about an hour from here) to see their Dr's because that's where we would deliver. Right now we're still waiting to meet with the ONE high risk Dr. on base because he's on leave until Monday, so we're just seeing what the Germans plan for our situation and then will talk to the American Dr. to see what they would do. We have to decide if we want to be treated here with the Germans, or go back to the States for it all. That would entail us moving very quickly back over there (don't know where) and then getting treatment. I'm not sure how I feel about packing my whole house, selling a car, flying back over there, finding a house, getting settled in... all while I could deliver at any moment.... we're still weighing all our options. From what we've read, I will most likely have a c-section between 35-37 weeks, if I don't go into labor on my own before that, which is a great possiblility given that when the intestines get more inflamed in my uterus it sends a signal to the baby basically saying "Let's Go!". This is scary because at last weigh in yesterday he's only 2.4lbs, which is measuring 2 weeks behind in weight. This is common for having gastroschisis but still worrisome. He's nice and long though, measuring at about 16 inches which is right on track for 31 weeks!! =) So basically we have a long, very skinny baby... but hopefully I can get him to fatten up a bit =)... an excuse to hit up the ice cream cake?? I think yes. anyway, thank you all for your thoughts, prayers, and kind words. A big thanks to our families who are rallying behind us in support and making us feel so loved. We love you all and I will keep you all posted.

Prayers, please- 5Jan09

We found out today (I am 31 weeks) that our baby has Gastroschisis, which means his intestines are outside of his body. He's going to need surgery right after birth and will take weeks (or more) to recover enough to get out of NICU. There are quite a few complications that could arise, but everything could also go smoothly, so we're going to focus on the positive and stay optimistic. We just ask that you pass the word along for thoughts and prayers for our baby boy, and also for us and the extended family.
We appreciate all the support we've already gotten from family and friends.
Here's a picture of our beautiful little boy- the only clear-ish one we got... on the right side of his face you can see the intestines up covering his one eye. but he's still gorgeous =)
Here's a link for more information: http://www.chw.org/display/PPF/DocID/34307/Nav/1/router.asp