The good, the bad and the ugly

Max is battling an infection tonight. Apparently, it's an abscess in the incision from his bowel surgery. The doctors think it's just in the outer layers of his body so far, so they're treating it with neosporin. I'm thinking he's gonna need IV antibiotics with puss oozing out of a wound and getting onto the open pieces of bowel nearby, but I'm just the mom, so we'll wait and see how this all shakes out.

In the meantime, he's totally uncomfortable. He can't wear the ostomy bag, because it sticks to the incision where the infection is, he can't wear clothes, because he doesn't have a bag to protect the ostomy, he can't stay warm, because he can't wear clothes, and he can't sleep, because he can't stay warm. Oh and did I mention, every time he moves his legs to try and curl up, he hits the stoma, which is unprotected and it bleeds and he cries and more poop comes out of the bowel and mixes with the puss oozing out of his incision? It's been a fabulous day on that front!!! AARRRGH!! It's so frustrating sitting there trying to hold his arms to keep him from smearing them in the open diaper catching his poop and holding his legs to keep him from hurting his stoma by kicking it and having him cry, because he wants to move and get comfortable and sleep.

But, if it gets better, and we get him comfortable, and he gets this ostomy reversed and comes home, it will all be worth it!!!

That's the bad, and I guess the ugly too, because that stoma oozing poop all over his clothes, body and bedding all day was pretty gross!

The good, was the wonderful gift we received this evening. 4 coolers full of breast milk. I forgot to ask the family if it was okay to mention their names in my blog, so I won't for now. But we were able to meet them and talk to them about their NICU time, etc...

We didn't realize until we saw them that we'd already met. You run into families in the parents room and don't ask or don't remember names. But as soon as we saw their faces, we remembered our conversations. They had been through so much of what we were experiencing. Their daughter came at 24 weeks (Max at 25). She had problems with a PDA. (Max had his heart valve fixed) Their baby has a perforated bowel and a penrose drain to help empty the belly until the bowel could heal . (Max too) Max is now in the room that their daughter once occupied. They both had NEC and bowel damage. Both were on ventilators, oscillators, and both mommies had to wait and wait just to hold them. They shared the same surgeon, and so many of the same struggles, but Max was lucky in that his bowels began to heal themselves, hers did not.

That's heart-breaking to me. That they lost their little girl. She died after just 10 weeks and Max reached 10 weeks just yesterday. We have been fighting and so has he for 71 days now. We are so proud of the progress he's made, of his will to live and yet we are still scared, that any given day, we could lose him.

We wanted to meet this family, to thank them for this precious gift. It's one of the only ways we have to help Max right now. There is so little that is out of our control. There are so many times when we just sit helplessly and wonder if we will ever see him through this. Breast milk was the one thing that I could give him and now mine is gone. Without the selflessness of this wonderful mom, Max would be getting formula tonight. Breast milk is what will be easiest for his body to digest, and it gives him a MUCH better chance of seeing those bowels heal. That's our goal right now, to give him every chance we can to make it, and come home to us.

They gave us a card tonight, saying thanks for letting them do this, to know that their daughter's short life had meaning. I thought the same thing when the nurses told us of this fellow NICU mom was was willing and wanting to donate her milk. This baby girl was a blessing to me, and to Max. Her life meant that Max gets another chance. I plan to keep the picture of this wonderful little girl who we never got to know. Someday, I hope to show my big, strong, healthy Max the picture and tell him all about her and how this fellow NICU family, in spite of their grief gave so much to help us get him home. I hope we can also share our photos and Max's progress with them, so they can share in our joy, and see how this little girl's short life meant the world to us.