Riley got a break from bloodwork today since his platelets seem to be holding steady. So no platelet count today. He made it through the night without his replogle, although he is vomiting occasionally. But from a mom's standpoint...what I see is this "Riley is hungry....Riley gets upset about being hungry after rooting around for awhile...Riley starts crying and crying in frustration....Riley gets air in his belly (you can hear it) and then throws up/spits up some afterwards". He isn't doing it a lot, and not a lot is coming up. and it just looks like spit. His stoma is putting out good still. BUT...he did it about 6:30pm tonight...if he does again before Midnight....the doc says the replogle goes back in. Which means another few days without feeds. I told the doctor what I have observed. We'll see what happens. If he makes it to rounds tomorrow morning (sometime between 8 and 11), without vomiting, he can begin feeds. I am SO hopeful he'll make it. He really truly is hungry. But at the same time, he has an assessment at midnight, 4am and 8am not to mention surgeon coming by between 4am and 8am to root around in his drain tube....all of which makes him mad as fire (the assessments) and scream in agony (surgeon). So I am prepared to go in and see that replogle tube in. And if it is, I am marching right down to the station where the docs and NNP's sit and demand to know WHY they won't feed him. If, as they claim, he's going to throw up regardless and has nothing to do with the tantrums, the what is the harm if he throws up a little milk along with the spit??? He may NOT throw up...and be much more content!! So tomorrow morning will be back to entering his room with dread. haven't had one of those in a while though so I guess I'm due. But it was another frustrating day. He was miserable. Not in pain, thankfully, but just aggitated and fussing. All.day.long. and at times, my holding him actually made it worse. A hungry baby being held my his momma who has the capability to feed him but can't feed him, tends to frustrate the already aggitated baby more.
In none food news....he wore an actual onesie today. I thought he could only wear the t-shirts because of his belly stuff...but turns out, he can wear anything I bring in, as long as I don't mind if it gets messed up potentially, from drainage or ostomy leakage. Ummm I don't!! Anything I wouldn't want messed up, I won't bring in, but seriously, you face that risk dressing babies anytime. A perfectly normal, healthy baby can have a diaper blow out and ruin an outfit. I really don't have any clothes up here for him though other than what was packed in the diaper bag for the hsopital. I did keep that bag with me just so I'd be sure to have an outfit to take him home in, if we left from here. I also had some cute little onesies in there. So I took them in and they promptly dressed him in one. Which his ostomy bag promptly leaked out on about 3 hours later as I was leaving tonight, but that's ok!! They are newborn size, and since he will be 3 weeks old tomorrow, I didn't know if they would fit him or not. They do!! Very much so. He hasn't grown much.
Anyway...here are some pictures from today. Jay THINKS he has my camera fixed. Can't wait to get it and shoot some pics of him with that one!
6 comments:
I am praying that everything goes well and Riley will be able to eat soon. I am sure he is so ready. The pictures are adorable. He loves his mommy, you can tell in those pictures.
Baby Riley, I am hoping and praying that you do not have the replogle tube this morning when Mommy comes in to be with you. I know you must be so hungry...poor baby. You look so sweet and huggable in your onesie. Keeping you in my prayers. Stay sweet little one. Love, Pauline
Riley - you must be a Winter - you look positively beautiful in RED! Hope today turns into a good day. jb
Hi Lindsey. You and your family are in my prayers daily. Today my prayer for Riley is: Angel of God, Riley's guardian-dear; to whom God's love entrusts him here; ever this day, be at his side, to light and guard to rule and guide, Amen.
Hi Lindsey. I heard about you guys thru a friend of a friend and have been following your blog. My twin boys both had major surgery and ostomies as newborns (reversed at 4 months, they now 5 yrs old). Their issues were different (Hirschsprung's Disease) but much of what you are experiencing sounds the same. It is scary stuff but it sounds like you are handling it well. You have my full support and please email me (myfriendjenny@earthlink.net) or call me (919-368-1923) if you want any more info, tips on ostomies, a visitor, etc. I'm in Chapel Hill and would be happy to come see you, meet you somewhere, talk to you, whatever! Jenny Regan
Little Riley looks like his mommy. He is a cutey! We are praying that he will be able to eat soon.
Aimee and Marcus
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