Too good to last

We're back in the hospital.

Since we went home on Monday, A has had some difficulty w/ his stools. Lots of blood. We had called emergency on Monday night and Erin talked to the surgery resident who wasn't concerned.

We then had a fantastic day yesterday. it was the best day of my life, I think. We went to the pediatrician, who wasn't concerned about the blood in his stools (we brought it with us) since he was back to yellow breast milk poop. We ran a couple of errands, and just worked to get into the swing of things back at home. In the middle of the night, though, the red/brown returned. We tried not to panic/wait it out as it had returned to yellow the day before. This morning, though, A wasn't eating well, so the surgeon's office saw us (after E called them THREE times and badgered them into an appointment.) The nurse decided, after looking at A, that she wanted the surgeon to take a look at him. Dr. L wasn't concerned about the blood, but said that A "just didn't look well" and that since there is such a "small margin of error", he wanted us back in the hospital.

E and I are taking turns rocking A. We are waiting for tests to come back. A was definitely dehydrated and we are waiting to see if:

• it is some sort of infection (requiring a 7-10 day course of antibiotics, probably)
• he has mal-absorption issues related to his surgery (could require a range of treatments)
• or to see if it was just dehydration (E and I were just talking and we have no idea what this would mean for us).

So, here we are again. Tired, feeling a bit defeated. We are, at least, glad to back in the same NICU where we started (there was a chance we'd have to go to a different one.) We are also relieved that G's daycare snuck her in for Friday as well as her usual Thursday visit. That gives us until Saturday to figure out how to arrange our lives. E is going to finagle work as best as she can.

No parents should have to go through this. Neither should any new little life to this world. A is still our little fighter. He is not a sickly child overall, we just have to get this under control.

AGGGHHHHHHHHHHHHHHHHHHH!

The post we've been longing to write

We're Home.

Sunday - Please let this be near the end

The last couple of days have been uneventful compared to our introduction to the NICU. They thought we might be able to head home on Friday. Our spirits were so high, and we were making the plans to head on out of here. Thursday night, though, we had a good notion that life wasn't going to go as we had hoped as A's weight had dipped HUGE. Friday night, we were disappointed with another low weight - though, the loss had lessened.

So, last night, we were very nervous to see A on the scale. We were ecstatic when we saw he had GAINED, nearly an ounce!! We did not have any expectations this morning, but all of a sudden - and don't get too excited here-- the doctor started saying things like "discharge" connected with the time frame of "this morning". She started to move on it immediately, and we were in jubilant shock. Everything was ready to go, and she began to do her last thing: the discharge exam. She pulled back the bandage to look at his sutures, and one of them was open and there was a bit of fluid draining... So, here we still are.

The good news, though, is that as long as the status of the suture doesn't change (i.e. does not pull more skin open, does not become inflamed and/or red, and he doesn't develop a fever), we are basically scheduled to go home tomorrow morning. (That, and he has to continue to gain weight.) I am finishing paperwork now for insurance, but other than that, it looks like we are on our way out - FINALLY.

Our NICU experience has been one that I never need to repeat. Unfortunately, we will have another hospital stay ahead of us in a couple of months when they put A's intestines back together again. Still, it will be planned and he will be healthy for that one... and we're going to be more than ready to get rid of his ostomy at that point.

On a good note, the folks here are really fantastic. Everyone is set up in a private room, so we've been able to spend the nights here. We have privacy all day to spend time together getting to know one another as a family - of course, we are more than anxious to do that on the outside of an intensive care unit, but we are lucky that we had the care that we did while here.

Maybe at some point in the future, we will blog more heartily about our feelings and experiences here. I've never endured so much fear and confusion. For now, though, it's time to go. I have to rock A. Please keep us in your thoughts for A to continue his healing and weight gain. He is a strong little guy, and we are so proud of him for making such great strides in just one week. (Thank God it wasn't any longer.) Thank you, again, for all of your thoughts and comments. We will never be able to truly express how much strength you all gave A's mommies while we've been here.

Nope *Updated*

Not going home today. A is losing weight, so we're guaranteed another night's stay. "Disappointed" doesn't really cover it. Of course, we need A to be healthy, and losing weight does not for a healthy baby make.

Continued thoughts are more than appreciated. Thank you to everyone for your continued support. We have felt you all over the last week. Thank you.

*Update*. We won't be going home until mid next week at the earliest.

NICU - Thursday

A meets Grandma for the first time.

A taking a baby nap.

All good news to report today. They discontinued A's antibiotics and we will likely see the last of the IVs removed this evening. We worked on nursing today (a lot more work to do yet!), and the docs think we will be going home tomorrow or Saturday. Yeah! It's almost time for A's second homecoming.

The newest news

Thank you all for your continued thoughts, prayers and comments.

Today we are doing exceptionally well. (So far, no sign of tears returning either... fingers crossed!) E and I stayed last night and felt like parents for the first time since we brought him home. At our request, the nurse woke us every few hours to feed him (and pump.) We took turns quieting him when he awoke upset. We are sleep deprived today, but this time it's for the right reasons, and it feels so good.

Not only did we have a good night, but we got the go ahead to increase A's feeding amounts. If he can keep all of them down (no throwing up!!), and we can keep increasing the amounts we are going to be looking at going home sometime this weekend. If any sign of trouble develops w/ feeds, we have to start over again... in the meantime, he's off his pain meds and they are decreasing his IV nutrition so that he will want more and more of the good stuff.

We are holding A constantly now. I am working on bring up my milk production, and we are going to learn how to work the ostomy bag because we're likely going home in a few days!!

Thank you, everyone. We've needed you so much. Thank you, thank you, THANK YOU!

Preliminary negative!

A had a tough night last night. He stopped breathing. They had to give him oxygen and a dose of anti-narcotic. His lungs had stopped due to the pain medication. After the anti-narcotic he snapped right back. It was the scariest thing I've even seen in my life....never again.

On a better note, the preliminary test for CF has come back negative! They will test for more rare strands but for now, we are convinced, no CF in our house!

He has also eaten for the first time in days. He was alert and looking for more afterwards.

Thank you for your support, he sure is getting those prayers!