The last two weeks have been unlike anything we've ever been through in our lives. On Sunday after my last post, Wilson's bowel perforated. This required emergency surgery, and his chances of making through surgery were 50/50. I held his hand as long as I could. He squeezed me from time to time. I was telling him to squeeze my hand when it hurt. Every time a doctor told me I had to let go, he let go first. He's more brave than I am. A surgical team came over from Peyton Manning Children's Hospital to do the surgery. It was very quick; they just inserted a little drain in his intestine through his side. He made it through. Thanks to his nurse, Kristy, who caught the perf very quickly, he had no infections and no dead intestine.
As soon as Wilson's surgery was over, we looked in on Luke just in time to see him having an full on seizure. His poor little hands were contorting. We were terrified. We just bawled our eyes out over Wilson's surgery, and witnessing this was even worse. The doctor assigned to us that night told us that seizures suggest a level 3 or 4 brain bleed. She mentioned the difficult decisions parents have to make when their newborn has a level 4 since he could have severe damage. The doctor also said that Wilson could have moderate damage and Ella could have mild to moderate damage. We were hysterical. She ordered a brain ultrasound and an EEG for the next morning for Luke. We didn't sleep at all. We just cried and prayed for 12 hours. By breakfast we decided to call Pastor Jeff and Pastor Melody for an early morning baptism. When I watched them do the EEG, I was sure they were checking to see if Luke was brain dead. Luke had held my hand and squeezed it more than once! I knew he was in there. Oh my goodness, like I said, we were hysterical. Right before the baptisms, the doctor for the week, our beloved Dr. Maylock, walked in with a big smile. She made a big tado to announce that no babies had any brain bleeds!! I believe that was truly a miracle. I've never felt so much relief in my life. She said that Luke's seizures were due to his rough start in life (his resuscitation took 13minutes) and that he'd grow out of them while in the NICU. She said that his future depended much more on the things we'd do with him at home as he grows up than any effects of his rough start. Again, just a miracle to us. We love our little Luke so, so much. (Since Luke isn't feeling well, we haven't taken any pictures of him recently. Even with the flash off, their oxygen levels drop if we take their pics or even open the blanket covers on their incubators.)
Wilson is doing a great job of recovering from his surgery. He seems to have sealed that intestine right up. His intestinal stuff came out of his body through his drain the first few days, and then he pooped like normal! That indicates the hole has healed! They are slowing pulling the drain out a little bit each day. In a few days he'll get a dye contrast and xray to make sure it's healed. A third of perfs will heal on their own and be fine. A third will heal on their own but have stricture that will require an eventual surgery. A third won't heal, some of the intestine will die, and they will need a bigger surgery. He's so small (1lb 5oz) that another surgery would be dangerous and so scary.
On this Sunday we walked into the NICU to the worst sight- neonatologists, respiratory therapists, and nurses surrounding your child. We walked up to Wilson and Dr. BenSaad was hand pumping air into Wilson. Both of his lungs had suddenly collapsed. Luckily the Dr BenSaad or Kathy, his RT, realized the vent tube needed to come out. When they extubated him, he had a layer of snot in the tube that was too stubborn to come out with the usual cleaning. He wasn't getting any air! They replaced the tube and took the opportunity to test Wilson on the conventional vent. (He'd previously been on an oscillating vent. The oscillator never lets the lungs deflate. It just puts little puffs of air in the lungs at such a high rate that the baby shakes.) Wilson has rocked out the conventional vent over the last two days. He's weaned down almost to room air. The vent is set to give him 25 breathes a minute, but he takes about 60. So he's initiating a lot! Kathy says she is so proud of him! Truly a blessing in disguise. Once he's healed from surgery, hopefully he'll be ready for the next step!
Here's a picture we took of Wilson today. They SWIM in their preemie diapers.
Oh, and both boys have blond hair, for now.
Oh, and both boys have blond hair, for now.
I love this kid so much... He is so sweet. He was the last one to open his eyes.
We'll be able to tell them apart now; Wilson has a surgery scar!
So after our gut-wrenching Sunday/Monday morning, we had a pretty decent week, and we loved having Dr. Maylock taking care of us. (Well, I guess minus the issue with Wilson lungs collapsing.) On Friday evening Luke's belly swelled up a bit. It was very scary to see. The big belly is what happens before an intestinal perforation, so we have been worrying about him constantly. The doctors don't seem as worried as we are about a perf. They were thinking it might be an infection, but they couldn't detect any. So, today the conclusion was that he's just stressed or fighting a virus rather than an infection. On Friday morning his belly was 16cm. He was up to 22cm on Sunday. Today he's 20cm. Hopefully he continues to come down. When you're only 1lb 5oz, a couple of cm is a lot!! The fear is that it will get too big and perforate just like his brother.
Ella being held by her mommas!
She has brown hair.
She has brown hair.
The CPAP hat is so tight on Ella's head that her head is misshapen and her eyes are swollen. :(
Listen to this cry!
Kristen was back to work last Tuesday- well, actually I don't think she was ever off work. She's a machine! She is also able to maintain her school work. I admire and love her so much. Kristen's mom was able to hang out with the triplets for over a week; it was great! She was with us in the hospital sitting with the triplets every day and helping us at home with laundry and cleaning. Kristen's dad was also able to come for a few days too! These triplets are really loved! My parents have been my rock. They clean our house from top to bottom regularly, do our laundry, maintain our house and yard, and take care of our dogs. My mom also has been at the hospital with me every day until Kristen gets off work. Dad comes every day, too, to check in on us all. Tonight for the first time, Kristen and I left the hospital at 5:30pm. We usually leave at 11pm or midnight. It feels good to be at home during waking hours, but at the same time we wish we were still with our babies. We just love them so much.
Kristen's 30th birthday is on Friday!!! She has big birthday wishes! For Wilson she wants a full recovery from surgery and to progress from the vent to CPAP or even the nasal cannula. For Luke she wants his belly to go down and if it does, maybe CPAP. For Ella she wants her belly to go down (it's full of air from the CPAP-scary looking) and maybe move to the nasal cannula. Happy Birthday, Kristen!! Love you.
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