Today was stressful to say the least.

We got to the hospital at 11am. (Sebastien was a trooper all day long–never once had a fit, took the day in stride). Scott and I took turns spending time with Sam, cheering him on, telling him it would be ok, how much better he’d feel soon. He was very sedated before the surgery; during the previous night, he was up most of the evening: lost an IV, new one placed, arterial line placed, lost, transfusions, etc.

Finally the surgeon came, told us what she expected to find, what she expected to do. We expected to find blockages in his intestines that she’d remove and then pull the healthy ends out through stomas. She was also going to remove his appendix since she thought the contrast fluid from two months ago had collected there; to eliminate any future issues, she wanted it removed. We went back to the waiting room, waiting for them to prepare Sam for transport. We walked down with him to the operating room.


The elevator ride and walk to the operating room was excruciating. I hated seeing hospital visitors prying eyes peering into my baby’s transport. And then we were there, signed the final paperwork, said bye to our Sam, returned to the waiting room.

And we waited. The surgeon told us she didn’t expect the surgery to take long: she’d examine every inch of his bowels, but she felt confident where she’d find a blockage, she’d fix it, get out. We naively were expecting to hear something within an hour and a half or so. The time ticked by and 2.5 hours had passed. My nerves were shot.

At the three hour mark, the surgeon rounds the corner. My body seizes, and then she smiles. I relax. And all that stress being held tight just released: instant headache, shoulders aching, body shaking. She said he did extremely well, that she found 2 fistulas in his intestines. These were caused from back when he had NEC, that the diseased intestines fused together as they were healing, causing a narrowed passageway in the loop. It feels like forever ago that he had NEC, and he had a very mild case of it, so the fact that this happened because of the illness is incredible. Because the tissues on both sides of the fistulas was healthy (surprise, surprised!!!!), she was able to sew them back together. So no need for stomas and bags. Fantastic! She was also able to remove 210 CCs of ascites fluid from his abdomen that had been backing up. She said that he looked like a completely different baby. She also said that almost immediately his ventilator settings started coming down — of course, he could finally breathe!

We now had to wait till Sam was back and stable in his room, so we went for a walk, to clear out heads, to take a breather. Our Sam did great! We finally cleared a major hurdle, we can finally move forward.

When we got the call that we could go see him, we rushed back.

I knew to expect a different baby, but I wasn’t quite prepared for what I saw. Sam looked fantastic. My mouth dropped. I never expected him to have an almost flat belly! His liver is still swollen, so we were told he’d still have some distension. Instead, he looks like a normal baby now!

He’s going to swell back up again over the next few days, expected after major surgery. But hopefully this time when he loses it, it’ll remain gone. We’re also hopeful that we’re over the hump, that we can move forward, that the dominoes will start to fall. That his respiratory issues will resolve themselves, that his cardiac issues will resolve. After all, that great pressure he felt in his chest is GONE.

When I visited him, he was still very medicated. When Scott visited, Sam woke up! He kept his eyes open, just staring straight ahead, then he’d sort of shake it off. His nursed joked that he was tripping from the medication. So she immediately gave him more! They want him to sleep for the next day or so, don’t want him active or fighting anything.

The picture below is from above; it shows his cut and his new central line for medications. This was also one of the times when he woke up. Don’t you know that he felt comfortable for the first time in such a long time!


11 thoughts on “Recap

  1. Lauren says:

    Oh, Sandi, I am so happy for all of you. I am hoping that this is the start of a much smoother ride for Sam. He certainly deserves some breaks after all of his fighting, though I know he has more obstacles to get through. If I could see you now, I would give you a big hug. You have one — make that two — AMAZING little boys.

  2. I’m so happy to hear that Sam finally caught a break. I’m also praying that this is the beginning of many good things for him. Fortune favors the brave and by golly- you guys have bravery the likes I’ve never seen.

  3. Oh, I’m so so so happy to hear how well he did! I’ve been thinking of him all day. So wonderful! I’m so glad it was something so EXPLICABLE causing the problems. Something immediately recognizable they could easily fix. So great. I’m sending out my purest thoughts to the universe, a plea for him to heal and move past all of this. He looks so beautiful!!!!!!

  4. Michelle says:

    *Fhew* Deep breath! I’m so happy to read your recap. You really have a little trooper there. He looks perfect and very, very peaceful ❤

  5. DK says:

    Wow! He looks amazing! What a little fighter. I am just hoping that this is the beginning of things falling into place like you said. I really think it is. Keeping the prayers coming your way. Looking forward to more happy updates!!

  6. Caroline says:

    OMG I am so happy that all the prayers sent out Sam’s way worked – he looks like a different little boy. He is a fighter little Sam and couldn’t have better parents supporting him all the way. This is such great news to wake up to!

  7. Mom says:

    PRAISE GOD! I am so happy that Samuel is doing so much better. Thankfully, that fluid is out. I pray that GOD will continue to heal precious little Samuel. He is such a fighter.

  8. Cheryl says:

    I just wanted to say you have a beautiful baby and he’s such a fighter. I know God is watching over him and your family. I pray that God continues to heal him and bring you all together very soon


  9. Rebecca from FF says:

    Praying Sam is having a much more comfortable day and is feeling better already. Lots of prayers and hugs for you all!!!

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