Kenzie is in the NICU

I'm up at the hospital (using computer in the Children's hospital library) with Kenzie who is in the NICU. We've been here since Thursday. She had to have emergency surgery on  her intestines. This is what happened and Mom's really need to read this so you can see what can go wrong if you don't either A. Listen to your baby OR B. Listen to your mother's intuition OR C. Get a 2nd opinion.

Kenzie has always been pretty spitty since she was born, mostly like a mucousy spit-up. Ped's office just told us to use saline nasal drops, so we did.

Kenzie did NOT gain 1 oz. her first 2 weeks of life. She was STRICTLY breastfed up until then. Dr. said it was my milk not providing her enough calories even though she was getting PLENTY of volume. Didn't think that sounded quite right but started supplementing her with formula anyway.

When she was 5 weeks old, she had an episode that started early in the morning with her spitting up constantly and quite a bit at a time. By the evening it hadn't let up and she was spitting this unearthly color of yellow spit up (like a neon yellow, stomach acid color). I immediately took her to the ER. They started an IV and did an ultrasound. They didn't give her any fluids, just gave her access. They were looking for pyloric stenosis (a thickening of the muscle that is around the opening at the end of the stomach which prevents food from being able to pass through the intestines and it causes vomiting. Happens in babies from about 3-8 weeks). They couldn't see what they were looking for on the ultrasound and they said they could either admit her and redo the ultrasound in the morning or I could take her home and she could see her pediatrician the next morning and she could reorder the ultrasound. We opted for the 2nd choice.

Next day at the ped's office, she looks at her, she wasn't throwing up anymore and she gave her a bottle of pedialyte right there in the office. She kept it down and the Dr. didn't seem concerned at all. She sent us home. No repeat ultrasound. Just orders to give her 8 oz. of pedialyte spread out over three bottles and then we could start her back on formula/breastmilk. We did that and she was fine until two weeks later.

Last Wednesday, Kenzie starts the same thing again but a little more intense in frequency. She was throwing up at 5-15 minutes after eating ANYTHING formula, my milk, water, pedialyte. Then the yellow vomit came then it was like a grass green koolaid. I told my husband to immediately take her to the ER. While there they did an ultrasound and an xray. They told us that she had pyloric stenosis and that she would need surgery. They wanted us to go home, pack our stuff and head to Children's hospital (which is about an hour and a half away from us). I was scared to death.

We get here (finally after being given the address to the WRONG hospital by the 1st hospital and wandering around THAT hospital for 45 minutes learning we are at the wrong place) and they took her almost immediately to ultrasound. They looked at her and hallelujah! No pyloric stenosis. I thought maybe she'd just end up having some type of acid reflux. After I talked to the surgical resident about what happened with her, we were in the GI lab getting an upper GI STAT.
We got back up to the room and not 5 minutes later, there was the surgical resident and a team of folks ready to take Kenzie to surgery. Kenzie had a malrotation of her intestines and it was a major emergency at that point. Her intestines were all twisted up and they weren't in the right place. They were worried that part of her intestines may have lost blood flow and could be dying.

Surgery was 2 hours and they rearranged her intestines and pinned them into a new position. Her large intestine is entirely on her left side now. They removed her appendix to avoid any confusion later in her life and her small intestine got rearranged as well but it's hard to explain without a picture.

She's in the NICU, she can't eat for at least 5 days, has a tube in her nose to her stomach sucking the gastric juices out since they don't want them to try to go through her intestines since her intestines aren't moving at this point. Then assuming all is well on day 5 they will stop the suction in her nose and see if her belly can move them through and make sure her belly doesn't swell up or anything. Then she can start pedialyte or sugar water. She'll do clears for at least 24 hours (or more depending on her ability to tolerate) then move slowly to feeds. When she can tolerate full feeds for 2 days THEN she'll be able to go home.

Please pray for Kenzie. She's being a trooper with not being able to eat, but I'm not going to lie, she's having a hard time. Please pray that she recovers well and has no ill effects from this. It's really hard. Thank you all!!

Your entire family will be in my prayers. I am thankful that you were able to catch this before it became an even worse situation.

 

I am so sorry your little one and your family have to go through this. Prayers for you all.

Hoping for a quick recovery and prayers for all of your family!

Oh my god, that's terrifying! I will keep Kenzie and you in my prayers!

We are sending our prayers for little Kenzie!

So now I need to ask you a few questions. Has she been pooping? Did it come on gradual like starting with just spitting up? Did the throwing up come and go?

Just sounds a lot like Sydnee except for the green color. Checked for pyloric stenosis at 4 wks and 7 wks because Max had it at 3 wks but that was negative. Its projectile vomiting. Changed her formula 3 times and tried different bottles. Nothing! She pooped 3 times in a row today and all 3 were hard, earlier in the week it was all water. She sees her pedi again tomorrow.

Praying for her quick recovery!

Thanks for your prayers Amy!

Yes, she was pooping. Never had an issue with that at all. She was pretty spitty from birth and I just thought something was wrong, but just couldn't quite put my finger on what it was. Then when she had that green vomit, I knew something was WRONG.

If you don't find out what is wrong with your baby, ask that they do an ultrasound or if you already had that done, get an upper GI. Also, using a formula like Enfamil AR or Similac Sensitive Spit up formula is good too (if all the other tests come back fine) because they have added rice starch, which thickens up the formula and keeps it in the belly a little bit better...weighs it down, so to speak.

I hope you figure out what it wrong or at least finds something that helps her. ut if you feel something is not rigth with your baby, PLEASE insist that they keep looking. I just KNEW something wasn't quite right with Kenzie and it kind of kept getting blown off. If we hadn't had gone to Children's, Kenzie wouldn't be with us right now. Malrotation is serious business and can kill bowel. Before they came up with the procedure to fix this, over 90% of babies with this problem died. We're SO lucky we caught her problem early and took her to the ER when we did. We could've had a VERY different outcome. I'm just so pissed at the Dr's for not doing more a heck of a lot earlier. She still would've had to have surgery, but still, it could've been caught earlier.

Allie,
I'm so sorry your family is being put through the wringer!  I hope Kenzie is better soon.  Babies are so resilient.  You are all in my thoughts and prayers.

Thanks for sharing your story.  I think it helps some of us more inexperienced moms.

 Oh no!  I can't even begin to imagine how you must feel right now.  Keeping Kenzie and your family in my thoughts and prayers.

ohh that poor sweet baby... i hope she heals well and quick.. stay brave