9/19/08 - Post Surgery Update



Sorry to keep you all in suspense all day long. The surgery went smooth, but the doctors didn't find any narrowing or blockage in her digestive tract that could be causing her motility problems. It wasn't the outcome I was hoping, but it certainly rules out several other possible problems. I was actually hoping for something to be wrong so they can fix it right then and there. I hate that she has a scar now, but she is one step closer to figuring out what the problem is.

The orders are to start her feeds when she has recovered and when her stomach starts to get big, we are going to feed right through it. That means we will really have to sing the poopy song and do the dance at the same time. The doctor said from what the intestines look like, if she isn't throwing up then there is no reason to stop her feeds. We will be using breast milk this time around and we will keep an eye on her blood sugar levels. I am feeling a little guilty that we didn't try the breast milk before we did the surgery, but the surgery was a success overall. It shows that the problem more than likely is within the nervous system, which isn't pushing the stool along the digestive tract like it should. Even though Kayleigh is a term baby now, they are chalking it up to her being so small.

So after a very stressful day, Aimee and I treated ourselves to Babies R US!!!! Woo Hoo. We bought several things for Kayleigh's room and then decided to register for a future baby/homecoming shower that Aimee's sister, friend and my Mom are planning. Most guys would say that the best part is getting to hold the scanner gun, but I let Aimee do it and we perked up quickly with excitement. We feel like Kayleigh is another step closer to coming home and if we aren't careful, she will be home before we know it and her room won't be finished. I am a champ with the camera, but I won't take photos of the room until we are finished. :( sorry!

So overall, today was a success because Kayleigh is now recovering well and has gotten her sats up back to normal. She was struggling a little when she got back to her room, but after a few hours she calmed down and started to relax. I thought she was supposed to be knocked out sleeping for the rest of the day, but that sure wasn't the case. She had her eyes open at one point and she was sucking on her ventilator tube. I wonder if she is hungry (Ha!). Kayleigh likes to do things her way, and that way isn't always the easiest route as we all know. I am just so glad she handled the surgery well and can soon focus on eating and growing . The eye surgery and this GI surgery is just getting her experienced for her final surgery on her heart, which is the big one.

Thank you all for your thoughts and prayers today. Even though nothing was found, God had his reasons for this surgery and I am putting all my trust in Him. Soon, Kayleigh will be home and we can all rejoice in God's amazing work. I am currently writing a book about our experience so I can reach out to others and give them the hope that you all gave me. I keep telling myself through all these ups and downs, that Kayleigh is the true author and she is just trying to make it exciting for everyone.

God Bless,

The Freemans :)


Jennifer in NM said...


Way to go girl! You did wonderful. Glad to hear that there is nothing anatomically wrong. That is a plus. I knew you would show those docs.

Adam and Aimee,

What does this mean as far as the chromosomal disorder? Are they still goint to test for that or did the bowels and intestines look normal and has pretty much been ruled out? Is there a laxative they can give her? Or a stool softener? Would it even help with the fact that her nervous system is not ready? What about caffeine? I know lots of questions but I am now curious.

I am glad you guys had fun today...you so well deserve it!!!


Unknown said...

SO glad the surgery went well!!! Ill continue to pray for poop. I dont think Miss Kayleigh could get any cuter...her pics just melt my heart :0)She looked so big especialy after I scrolled down and remembered just how tiny she once was.

Anonymous said...

First off, Kayleigh is BEAUTIFUL! Most definitely a gift from God. I can't even start to tell you how inspiring both you and Aimee are. I just started reading your blog recently and your whole family is in my prayers.

God is doing something with you guys and it'll turn out amazing :-)! I can't wait to hear the next chapter.

*Oh and I'm excited to read your book as well!)

Stay Strong!!

Unknown said...

Glad the surgery went well. I'll just continue to pray for her system to kick into gear and start doing what what it was made to do....poop! :) She sure is a lil trooper. She's just testing you to get you ready for those teenage years to come. hahaha!

In Christ,

Unknown said...

I am happy to hear the Kayleigh is recovering well from surgery!

Have they tested her for Hirshprung's Disease? It is when the children lack the nerve cells in the large intestine, so they become very constipated or can not have a bowel movement at all.. Just a thought..

Thanks for keeping us posted! (google the hirshprungs, it will explain it better..lol)

Anonymous said...

I've been following Kayleigh's story since the beginning but never commented. I now feel I have to. God bless you Kayleigh, may the road ahead of you be an easy road.

I'm the mom to a 25 weeker. Tyler had undiagnosed bowel problem from day one. While in the NICU he never pooped under his own command. They gave him suppostories when things got tough and even that didn't always work (At it's best they were mixing prune juice with breast milk, it seemed to work when his was tiny). Now at three years old, he goes every 7-10 days (and it seems to be improving)by day ten he looks like a "skinny, fat guy", but it doesn't seem to bother him. He is on a regimen of osmotic agent, laxative and occasional suppository w/a high fiber diet (not the easiest for a picky guy). His GI dr calls it "immobility of prematurity". A nervous system issue. Some parts of the GI track just don't push things along like they should. They say it will either remain or get better with age. I hope I eased your worry a little :)

God bless you and your family. Kayleigh is always in my thoughts and prayers. She's adorable and strong.

Adam said...


They did a biopsy today for several different things and we should get some results back within 24 hours. Sorry I meant to post that tonight. oops :)



Sam said...

Yay Kayleigh for doing so well! David had to go through an "exploratory" surgery when in the PICU, when he was a about 10 months old. They were looking for the same thing - a bowel blockage or something that kept him from pooping. They didn't find anything either - which I remember thinking really sucks, since you send your child into have surgery for them to come out fixed... and that didn't happen. However, eventually he did poop. Maybe they could give her some flax seed oil? It's good for several things - weight gain since it contains calories, but also nutrition and it helps them poop. Another thing they did for David was to give him some "GoLytly" or something like that to help him go. (I had to go back to April 2006 on my blog to find that LOL)

Anyways... the good news is that now, David's scar from that surgery is barely even visible. In fact, hardly any of his scars are very noticeable... or maybe it's because I'm so used to seeing them that I don't notice. I'll check tomorrow when he wakes up :)

Anonymous said...

Great to hear the good news that they didn't find problems for Kayleigh during her surgery today.

I have an overwhelming feeling that I need to share with everyone. I believe that if we all pray, really pray, Kayleigh will not need this surgery on her heart. You know, God is in the miracle business, and we just have to pray and believe, asking in faith for God to perform another miracle in her life. I strongly believe this!! We can do this for Kayleigh!

Keep your faith, guys.

Expecting more miracles,

Anonymous said...

I'm glad the surgery went well and that she is resting okay. I'm sorry they didn't find anything, but sometimes there is a little bit of peace in knowing that there are things that aren't wrong. KWIM? So, at least you can move forward with the feeds and see if she can grow and get past this.

She really is an adorable little dolly girl. I just want to squish her cheeks now that she has some chub to squish. :-)

Sarah Suzy said...

Praise god! I'm so glad Kayleigh pulled through and glad that they are going to start her on breastmilk! I have a good feeling it will help her a lot. I certainly hope that a resolution to the tummy problems is just around the corner. Who would have ever thought pooping would be such a highly anticipated event?

My 4 year old daughter and I read everyday and she's started doing a "grow Kayleigh grow" dance and she even has a babydoll named Kayleigh that sleeps in an "incubator" and wears "oxygen" who she takes care of dilligently and we pray for Kayleigh every night...you and your family are never far from our minds and hearts.

I got my bracelet in the mail on Saturday and as soon as I get a picture and a letter written I will get them mailed off...I will also send a duplicate via email just in case it gets lost. Thank you so much for the picture..its next to my bed so I never forget to pray before bed.

Thanks so much for sharing Kayleighs incredible life with all of us "strangers".
Grow Kayleigh Grow! Poop Kayleigh Poop! Go Kayleigh Go! :o)

Sarah J.

Anonymous said...

Hi! I posted a link to Kayleigh's website in my new blog on myspace. I want people to be inspired by Kayleigh!


Anonymous said...

I am so glad the surgery went well and that they didn't find anything wrong. I can understand how you would be frustrated by a scar, but it's going to be such a great story some day. Parker has a scar from his cpap on his head and nose and I can't wait to share with him his story!

Been thinking about you all, sorry for not commenting much..life's insane right now. But know I read your blog everyday!

Anonymous said...

You dont know me, I live in Billings MT and just got done reading your story. I am SO happy for you, but it is a little bittersweet for me. I have 2 girls ages 13 and 10, and in Dec 2001 I delivered my son at 25 weeks (they took him because my placenta was seperating) and he weighed 1 lb, 1.5 oz, 11 inches long. Unfortunately he only lived about 18 hrs. One things that stood out was in oneo f your videos, the nurse made a point of saying Kayleighs tummy wasnt hard- my son's (Bryce) was. He has tummy problems and we didnt have time to find out what. Anyway it had gotten easier with time, and what helps me is to hear other babies who did make it. I am so happy for both of you, God is good :)