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