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