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