I wish I were writing with better news, but I am not. I received a cal this morning about 10:30 that our upward climb is taking a very sudden stop with Evan. The neonatologist suspects that Evan my have NEC- necrotizing enterocolitis. If you google NEC, you'll find all sorts of horrid explanations of what it is. It's not good. In fact, it's down right terrible. He had been doing extrememly well, but yesterday started to not tolerate his feedings well. Then, last night, he had blood in his stool, which for a preemie is not a good sign :( They did an X-Ray (2 so far actually) and found a small spot of his intestine that is very, very questionable. Not "textbook" necrosis, but not good either. So much is on the line...so much. Please...please, I beg of you....please pray. Alec has been having some issues with his feedings, also starting yesterday, and they have backed WAY off his feedings after all that's going on with Evan. Alec's Xrays have been completely normal thus far. I am so scared, I can hardly breathe. I can't see past the tears and my heart is aching. Please dear lord, please don't take my son.
7:00 pm
Evan Update: We spent the day in the NICU. I called Curt in tears and he came right home and we went up. He could not work after hearing the hard news anyhow. After he got home, he held me as I crumbled into a heaping mess of sobbing...so hard that my incision hurt and my belly felt as if it would rip open with my sobs. Miraculously I pulled it together, long enough to get to the NICU. Then I saw him and cried all over (not because he LOOKS ill but just at the sight of him).
Our neonatologist sat with us for an hour and explained it to us again, answered my 2190238 questions. Here is the lowdown. Evan had blood in his stool early in the morning, and was immediately taken for an X-Ray, which showed a questionable patch in his intestine/bowel that looked necrotic, but was NOT the classic pattern. She explained that classicly, necrosis shows up as bubble-like pattern up and down the bowel in a linear pattern. Evans was in more of a blotchy section. She said that when it shows up that way, it COULD be stool moving through the bowel, but she took TWO xrays at two different times, and it was there, in the same place, where stool ususally MOVES through the bowel. So, it was not looking good. She did not officially diagnose him with NEC because the abnormal spot on the x-ray was not "typical", but it WAS abnormal and VERY, VERY questionable.
We stayed as they did another X-Ray. Much to our surprise, and to the suprise of the doctor, that spot had dissapated. However, there was a dialated portion of his bowel that did show up, that was not normal. So, we're not out of the woods, but it IS good that the spot had gotten better in this past x-ray. She said that we should know more in 3-4 days as things progress.
Evan is in Stage 2, of THREE stages.
Stage 1- Feeding intolerance- Evan was showing what they call "residuals" with his feeds. His feeding tube that you see in pictures that goes through his mouth into his stomach feeds him, and they also use the syringe to pull out any "residual" food from his belly BEFORE feeding the NEXT feeding. They dont' like to see a TON of residual because it shows that they are not digesting the feeding well. BOTH Evan and Alec have had several feeds with high volume of residual left in their stomach in the last 18 hours or so.
Stage 2- Blood in the Stool/Abnormal X-Ray showing necrotic areas- Yes, and yes. Although, remember, his x-ray was not a "textbook" case, but WAS abnormal.
Stage 3- The intestine/bowel become SO "sick" (dies) that it gets weak and a hole develops in the intestine/bowel. Surgery is needed if this happens.
So, Ev is "between a stage 1 and a stage 2". They are watching Alec like a hawk because they are afraid he is "following in his big brother's footsteps" so they will try to take things very slow with him too.If Ev gets to Stage 3, he will be transported to Madison for surgery. I am trying not to think about it. She said that IF it happens, it goes very quickly, meaning that if a hole develops, she starts calling the team in Madison, calls us, and transports him. I can't even think about it...but IF it gets to that...it will likely be quick.Please keep your prayers coming. SO much is up in the air....I'm so damn scared. His next X-Ray is at 10:00 pm, so we'll call up there at 10:30 pm to an update. I will update here when I can.
Our beautiful baby boy Evan Curtiss:
(Alec-Left, Evan-Right)
11:00 pm
We phoned the NICU for an update after Evan's 10:00 pm labs and newest X-Ray. The nurse told us that his labs looked very good, and in fact have improved. His tummy is soft, and he's looking good thus far. She also told us that this X-Ray looked good. In fact, she used the word "normal"!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! She said that the area of the bowel that was dialated is still there, but they look for bowel that looks "fixed", and she does not feel that this is at all what Evan's looks like. She said that she hopes and perhaps even believes that this will all turn out to be "a big fat nothing" but that they will continue to treat it as NEC and do the full course of treatment. NOW...this was NOT our normal doctor, not the doctor that we talked to all day and that took the X-Rays all day, etc. I am VERY anxious to review the results of THIS X-Ray and tomorrow morning's X-Ray first thing in the morning. But oh MY...after a LONG day of gut-wrenching sobbing...it WAS beautiful to hear that word........NORMAL. I pray it continues to look normal and that Evan makes a full recovery, and has simply scared us a little. We are NOT out of the woods yet, and I must remember this, but for tonight, I may, just MAY be able to sleep.
Please keep your thoughts and prayers coming....we appreciate them SO very much.
P.S. Oh and I did ask about Alec, and he continues to look good as well ;)
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