tag:blogger.com,1999:blog-3511754798290820361.post6920061264723819157..comments2023-11-29T03:53:03.441-05:00Comments on Kayleigh's Story: 3/4/09 - "To Do or Not To Do"Adamhttp://www.blogger.com/profile/11866335057753880067noreply@blogger.comBlogger56125tag:blogger.com,1999:blog-3511754798290820361.post-53791793639408916122009-03-15T20:14:00.000-04:002009-03-15T20:14:00.000-04:00I just happened across your blog through Abby's. ...I just happened across your blog through Abby's. I just wanted to send you a word of encouragement. I know that my daughter's situation is vastly different than Kayleigh's... but Ironically enough her name is Kyleigh (said K-eye-LEE). She had the g-tube and we, with our surgeon decided against the nissen because she was not refluxing AT ALL. Not only is she refluxing now... but on her 24 hour Impedence Test she refluxed 75+ times, aspirated 11 times. So... truthfully I have loved every single minute of having this g-tube. We fought so long and had an NG for so long this was a welcome addition. Our Kyleigh is now on prevacid and we are debating another surgery for a Nissen... when it could have all been done at once. <BR/><BR/>Also, I don't know if you are already a member but there is a GREAT forum called Parent-2-Parent that has some really experienced parents with LOTS of g-tube, feeding, refluxing experience... as well as tons of other experience, trachs, etc.<BR/><BR/>If you ever have the time to look it up I highly recommend it. It has saved my life many times!<BR/><BR/>I know that God blessed you with this amazing little angel because you have the strength to make it. I know this because he blessed us with Kyleigh because he knew we would never stop fighting for her. <BR/><BR/>I am praying for Kayleigh and your entire family! <BR/><BR/>Amber Schmidt<BR/>Lexington, Kentucky<BR/>http://family.kentuckystudio.comAmber Schmidthttps://www.blogger.com/profile/14255596603226871737noreply@blogger.comtag:blogger.com,1999:blog-3511754798290820361.post-85838806993810045262009-03-11T00:35:00.000-04:002009-03-11T00:35:00.000-04:00Hi, I just found your story and I am the mom of a ...Hi, I just found your story and I am the mom of a 24 weeker, so I know much of what you are going through most of his issues were respiratory in nature though. <BR/>My prayer are with you all, I have been there and even though it is hard it isn't forever. <BR/><BR/>My other reason for commenting is that my son was automatically put on a MA program since he was less than 1200 grams at birth, and Kayleigh weighed even less than he did, your hospital social workers should know about that. It is a federal program and isn't income based (as far as I know) This program was developed to give preemies the best care and give their parents the freedom to care for them. Check it out, I am sure that someone has mentioned this before but I wanted to bring it up just incase noone had. <BR/>Good Luck and if you would like to get more information contact me at heidilynwatson@gmail.com. I would gladly advocate for you, via the phone obviously but I know that there are programs out there to help. Good Luck and God Bless.Heidi Lynhttps://www.blogger.com/profile/14666285091147527750noreply@blogger.comtag:blogger.com,1999:blog-3511754798290820361.post-899613972553863582009-03-08T13:58:00.000-04:002009-03-08T13:58:00.000-04:00I would push to not have the surgery. Since I hav...I would push to not have the surgery. Since I have had a few of my boys in the NICU and seen much, the surgery is to make it easier for the nurses and doctors. they have only so many hands, so all babies longer than normal, get a nissen and a gtube. In the NICU we were in, every baby there past 3mos, had the surgery done. The babies were not held, but had a tube leading up to a syringe/pump that held formula. Eating problems arise, making it harder to get them to eat orally. <BR/><BR/>I would make sure they are doing this surgery for the right reasons and not making it easier for them. They will come up with many excuses...Our NICU was sued because of this......they are not allowed to do the Surgery and gtube placement anymore unless medically proven.<BR/><BR/>Good luck!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-3511754798290820361.post-6943920013946387892009-03-07T20:01:00.000-05:002009-03-07T20:01:00.000-05:00I am so happy to run across your blog and see your...I am so happy to run across your blog and see your daughter doing so well. My son had a gtube put in at birth....a year later they ended up doing the Nissen. <BR/><BR/>He is adopted and his first 7 years of his life he was misdiagnosed. We went through so much with him. (www.lifewithcms.blogspot.com). I am working on a blog for his life, he is now 16 almost 17 yo and approaching one more surgery. <BR/><BR/>If the doctors feel she is strong enough, I would have the Nissen done now if she is going to be out anyway. BUt only if she is strong enough. SHe is adorable. What a miracle! I love miracle babies. My Brian is one too.The Adoption Journey of Baby Kinghttps://www.blogger.com/profile/14630232269978070725noreply@blogger.comtag:blogger.com,1999:blog-3511754798290820361.post-39714743828098472982009-03-06T15:42:00.000-05:002009-03-06T15:42:00.000-05:00Doctors "recommend" alot of things, that is their ...Doctors "recommend" alot of things, that is their job. But ultimately it is up to the parents. You have the answer in your hearts. You know your baby and what she needs.<BR/>I say step at a time, as you have been doing. That has been producing great results! Too many procedures at once may rock the boat. Keep things simple, ezpecially if she is not aspirating now means she probably won't in the future either. She is making her way out of this mess and growing bigger and gettins stronger everyday. She continues to prove herself, through the grace of God! Go Kayleigh Go! You are a miracle. You have great parents making great decisions for you. Looking forward to what March may bring... a homecoming I hope!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-3511754798290820361.post-50796860977127830422009-03-06T15:11:00.000-05:002009-03-06T15:11:00.000-05:00All i can say is do both procedures. She will alre...All i can say is do both procedures. She will already be under anaesthetic, and it's not a complicated procedure. You dont want to finally get Kayleigh home, and then have her re admitted to the PICU because she has aspirated and has pneumonia. I know this is a what-if scenario but I have seen it numerous times in my short career as a nurse so far. Do yourself and Kayleigh a favour. The Doctors would not have recommended it if they felt she did not need it!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-3511754798290820361.post-77859162259432315182009-03-06T09:36:00.000-05:002009-03-06T09:36:00.000-05:00Our son was in the NICU for 8 months, and we had a...Our son was in the NICU for 8 months, and we had a g-tube placed about a month before he went home. The general urge from the docs was to get the nissen, but I did not feel it was right for my son, and he has done very well without it. We are on no reflux meds at all; I just give him a little Gripe Water (found at the grocery store) every now and then if his tummy seems irritated. <BR/><BR/>This is, of course, a decision you have to make based on yours and Kayleigh's needs, but my biggest fear was that the nissen might make life easier for a few years, but that when he is older and his lungs are better, what happens when he needs to vomit, belch, etc, and can't. It's a lifelong decision, and as parents we have to consider that. NICU docs are looking to save your baby's health now... We as parents, and our little miracles, have to live with those decisions for the rest of our lives. It's never easy!<BR/><BR/>The good, and bad, news is, with very involved babies, you will constantly be at doctors' offices and if she does really develop serious reflux/aspriation issues down the road, it will be caught and can be fixed. Might mean a few months of extra work, but it may make living with the decision a little easier. (And just so you know, our baby has been home for 3 months now, and I'm not yet tired of cleaning up poop, pee, or spit-up... No one values the enormity of "normalcy" like a parent who hasn't gotten to live it.) Best of luck!Only the Sheppardshttps://www.blogger.com/profile/12746320655851190325noreply@blogger.comtag:blogger.com,1999:blog-3511754798290820361.post-6325397176140189352009-03-06T08:05:00.000-05:002009-03-06T08:05:00.000-05:00Hey there! My son has the nissen done, and he got ...Hey there! My son has the nissen done, and he got the mic-key button a couple months ago or so. (g-tube) Anyway, the thing i dont like about is that Landon cant burp or throw up with it. The doctors did it bc of his acid reflux and the meds werent helping. They told me sometimes they grow out of it, and sometimes they have to reverse it.. I hope he can grow out of it. But it will be soo nice when i hear him burp! :)Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-3511754798290820361.post-67479256210524384882009-03-05T20:33:00.000-05:002009-03-05T20:33:00.000-05:00that super precious little k is just too much! i ...that super precious little k is just too much! i love her little self. and what a kicker she is, getting all good and stuff! still praying!Danyele Easterhaushttps://www.blogger.com/profile/15645625553845575954noreply@blogger.comtag:blogger.com,1999:blog-3511754798290820361.post-11979027277886753632009-03-05T19:17:00.000-05:002009-03-05T19:17:00.000-05:00Im so happy to see little Kayleigh get along. Can'...Im so happy to see little Kayleigh get along. Can't wait to see her go home!!!!!southview chickhttps://www.blogger.com/profile/00061337762572662345noreply@blogger.comtag:blogger.com,1999:blog-3511754798290820361.post-13240179181312054752009-03-05T18:41:00.000-05:002009-03-05T18:41:00.000-05:00Congrats on the new job! I am sure you are reliev...Congrats on the new job! I am sure you are relieved to be working again! I am so thrilled after reading your posts about how incredible Kayleigh is doing. i just hope that she gets to come home to her family very soon. We continue to pray!<BR/>Katie<BR/>Baltimore, MDAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-3511754798290820361.post-37590799634613106312009-03-05T17:01:00.000-05:002009-03-05T17:01:00.000-05:00I found your site last week and have been fascinat...I found your site last week and have been fascinated, since I am a NICU nurse and I we take care of a lot of little ones like your baby. <BR/>I know you hear from so many people, but I had to give you my two cents worth! Please try to resist having the Nissen done when she gets the G-tube. You say she has tested negative for reflux before, so the Nissen would not be necessary and the recovery for that is soooo much longer. It is more invasive. I see babies do quite well with only the g-tube all the time. In the 23 years I have been a nurse, I see them less and less and the last 9 years, I haven't seen them done at all. <BR/>Keep up the updates. I love watching them. I see so many little ones like yours and they are growing and developing and doing well. They have a rough start, but they can come through it.Busy Momhttps://www.blogger.com/profile/09879288046906915472noreply@blogger.comtag:blogger.com,1999:blog-3511754798290820361.post-58905197912821753942009-03-05T16:19:00.000-05:002009-03-05T16:19:00.000-05:00I have just recently found your blog. Your sweet b...I have just recently found your blog. Your sweet baby girl has touched my heart and I continue to pray for you guys! You and Aimee are amazing to be able to keep your marriage going, I know how hard fin. burdens can be on a family. I have two little boys one 3 years old and one 6 months old. I thank God each day for their health!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-3511754798290820361.post-76324140516139387002009-03-05T15:10:00.000-05:002009-03-05T15:10:00.000-05:00Of course the Nissen procedure is going to be a de...Of course the Nissen procedure is going to be a decision that you will have to make based on what is right for your family. I would like to say that I am a NICU nurse and have seen over the years many many babies whose parents said later that they wished that they had done the Nissen with the G-tube surgery. I have known kids that after getting the GT have vomited literally up to 20 times a day, others who vomit less but "projectile" vomit 5-10 times a day. From my experience, some kids start making a lot of stomach mucus once the tube is in and the mucus + the formula is too much for their stomach and they start throwing up large amounts of mucus-y formula at every feeding. Of course there are many other kids who do fine and don't have problems with the vomiting issue. From what another poster said earlier, I would imagine it would be easier for a baby to learn to eat with the procedure already done than to have to re-learn later. Of course this is just my opinion, after changing hundreds of puke soaked crib sheets!Maryhttps://www.blogger.com/profile/07067971562280738656noreply@blogger.comtag:blogger.com,1999:blog-3511754798290820361.post-49577223931571233242009-03-05T15:03:00.000-05:002009-03-05T15:03:00.000-05:00If Kayleigh still shows negative for aspirates on ...If Kayleigh still shows negative for aspirates on the new test I would simply tell them emphaticcally not to do the procedure!! Aren't they required to get your concent before they do anything? The LAST thing Kayleigh needs is a major surgery just when she's starting to finally do well!!elteescathttps://www.blogger.com/profile/00598294396166961760noreply@blogger.comtag:blogger.com,1999:blog-3511754798290820361.post-10070276390329760322009-03-05T13:30:00.000-05:002009-03-05T13:30:00.000-05:00Just so happy for your family....congratulations o...Just so happy for your family....congratulations on your job and thank God Kayleigh is continuing to improve--she is so beautiful!!Andreahttps://www.blogger.com/profile/08649574825180630513noreply@blogger.comtag:blogger.com,1999:blog-3511754798290820361.post-30893655235913647012009-03-05T12:54:00.001-05:002009-03-05T12:54:00.001-05:00it sounds like you dont have peace about the Nisse...it sounds like you dont have peace about the Nissen. When you said you don't understand why they need to do it now... I would say, insist that help you understand or don't do it. this is a surgery that does have some drawbacks, like them all, right? <BR/>anyway, it is only my 2 cents, but if you don't have peace that means a lot.{darlene}https://www.blogger.com/profile/17310243306735564898noreply@blogger.comtag:blogger.com,1999:blog-3511754798290820361.post-15046066597421136972009-03-05T12:51:00.000-05:002009-03-05T12:51:00.000-05:00God bless you always ...God bless you always ...Anonymoushttps://www.blogger.com/profile/03514684684984192267noreply@blogger.comtag:blogger.com,1999:blog-3511754798290820361.post-34881844321519980552009-03-05T11:33:00.000-05:002009-03-05T11:33:00.000-05:00Adam and Aimee,I am so proud on how far Kayleigh h...Adam and Aimee,<BR/><BR/>I am so proud on how far Kayleigh has come along. If you both feel uneasy about the procedure than speak up and state to the doctors what you feel. There is no better instinct than those instincts of a parent.<BR/><BR/><BR/>Good Luck!!!MissJeovettehttps://www.blogger.com/profile/11927137097749005179noreply@blogger.comtag:blogger.com,1999:blog-3511754798290820361.post-64220069378964348112009-03-05T11:15:00.000-05:002009-03-05T11:15:00.000-05:00Hi I have been reading originally getting here fro...Hi I have been reading originally getting here from the Riggs blog.<BR/>Sounds funny but yes - go with your gut on the nissen. My son had it when he was 6 and he had to learn how to reswallow...can not vomit or burp.<BR/>It took 2 months - it was very difficult surgery and is controversial.<BR/>The Nissen came "undone" when he was 11. Now we just to prilosec or aciphex if he is feeling bad.<BR/>I would offer for you to ask for another opinion from a peds gstroenterologist that is well known.<BR/>Prayers continue.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-3511754798290820361.post-44836779645222163252009-03-05T11:11:00.000-05:002009-03-05T11:11:00.000-05:00I had the laproscopic Nissen fundoplication surger...I had the laproscopic Nissen fundoplication surgery 4 years ago when I was 24 years old. I realize having this surgery when you are older is probably a good bit "easier" than when you are a baby. It took me 10 weeks to fully recover, so I can just imagine how much longer it could take for a very young child. I gagged anytime I would try to eat or drink anything and thats because the esophagus spasms when you put anything hot or cold in it after surgery. I had to eat everything at room temperature in order to get control of this. Everything had to be very soft too so it could slide down. They drain all of the digestive juices out of the stomach when they do this procedure, so you cannot digest bread or meat...and tell you not to eat it for 10 weeks. I could also not sit up or use my abs at all for several months. Its a really hard surgery to go thru, but it really helped me. I have not had any acid refulx since and it also repaired my hiatal hernia. If Kayleigh does go thru this, it may set her back for some time and I am only saying that because I am a very healthy 20-something and it had me in the bed for 10 weeks!! You know what to decide - just go with your gut. If you need to wait until later in her life to do this procedure, it may be a better choice because of the recovery time/symptoms, etc.. Good luck to you and your family with everything!!! <BR/><BR/>Jennifer in SCAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-3511754798290820361.post-91941215217388948632009-03-05T10:58:00.000-05:002009-03-05T10:58:00.000-05:00What a fantastic picture!! I can't wait to show S...What a fantastic picture!! I can't wait to show Sam.4 Lettre Wordshttps://www.blogger.com/profile/16164130220334804366noreply@blogger.comtag:blogger.com,1999:blog-3511754798290820361.post-12656238837000370062009-03-05T10:03:00.000-05:002009-03-05T10:03:00.000-05:00Kayleigh is so cute in this picture:) Praying for...Kayleigh is so cute in this picture:) Praying for her and your family.Jenny @ flutterbyechronicleshttps://www.blogger.com/profile/06099773292436810588noreply@blogger.comtag:blogger.com,1999:blog-3511754798290820361.post-77054795024423827472009-03-05T10:02:00.000-05:002009-03-05T10:02:00.000-05:00Congrats on your new job! Based on what you're say...Congrats on your new job! Based on what you're saying about the Nissen procedure, I'd be really hesitant about agreeing to that if they can't prove that it's necessary. My son had some minor issues when he was a baby (nothing like what you're going through) but to make a long story short, I found that if I hadn't been doing my "own homework" my son would have been put through a lot of unnecessary and painful things. Kayleigh has been though so much. I can't imagine setting her back like that after so much progress. Just pray hard for God's wisdom on this. I of course we'll be praying too! :)Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-3511754798290820361.post-36636574632941990982009-03-05T09:02:00.000-05:002009-03-05T09:02:00.000-05:00Kayleigh is looking great....she is such a beautif...Kayleigh is looking great....she is such a beautiful blessing!!! Congrats on the new job. Keep the faith.<BR/><BR/>Praying for Kayleigh and family in NB, TexasAnonymousnoreply@blogger.com