Kayleigh wanted me to share with you a photo of her smiling for the camera in her bouncy seat.
She is doing fabulous right now. The doctors decided to postpone her surgery until next week while they contemplate whether or not to do the Nissen surgery along with the G-tube surgery. We are not too happy about this because they tested for reflux before and the test came back negative for aspirates. However, they feel that it would be wise to do the Nissen surgery anyways since she "may" acquire reflux in the future and since she will be under anesthesia while getting the g-tube put in, they figured it would be easier for them to do it now.
Aimee and I are not too excited about that decision because we wouldn't want a procedure done that is not really needed and getting the Nissen done is more invasive and will only set her back further with recovery. "To do or Not to do, what is the answer?" - lol
For those who don't know what the Nissen is, it is where the doctors perform an incision and tack up the stomach wall so their is no horizontal section left of the stomach to allow food to be refluxed/aspirated in to the lungs. It is not a high risk procedure, but the whole problem is we didn't go down this road a while back because the tests came back showing negative for aspirates. I don't understand why it is so important for them to do it now. It just doesn't make sense.
Other than that, everything else is going wonderful. She has been supplemented with a higher calorie fortifier (30 calorie Similac Special Care). She has been tolerating it well and the reason they are doing this is because they had to put her on another low volume diuretic to help remove some fluid retention and would still like to see more growth. She has grown a lot lately, so I don't understand this either, but anykind of growth is better then none at all.
Something that is so amazing to both Aimee and I is how calm Kayleigh has been since she has been taken off her pain medication. Changing her trach, diapers and picking her up does not irritate her or upset her one bit. She loves it and surprisingly is relaxed more than ever before. Normally, a baby would be crying several times a day over the smallest things and Kayleigh isn't doing this one bit. I guess she is giving us a break from all the crying we have done over the past 8 months.
Thank you all so much for your comments. Aimee and I are beyond blessed by the support from so many. I hope I answered most of your questions, but here are a few more that have been asked.
Since I got this new job, will our house be saved? Unfortunately not, there is too much to catch up on with the amount of money that will be coming in.
Will the bank be sympathetic now that I have a job? Nope :( They don't care because we are still too far behind
What actions are we taking about the house? We are working with United Family Services to apply for a program that will either drop our interest rates dramatically, pay for us to get caught up or just prolong the foreclosure process to give us more time to make a little money to pay the upfront money/first months rent somewhere.
Have you signed up for SSI and Medicaid? This is in progress and we are waiting for them to contact us with our completed file to sit down for an appointment and confirm our information. They are slow :(
Is Kayleigh still on CPAP and how long will she need the trach? Yes, Kayleigh will go home on the CPAP and will have an in-home nurse for as long as she will have the trach. It could be a year, two or more. Since she is on low settings now, hopefully the bronchials will harden quicker and she can come off of it.
I think that was it, but if you have anymore, just email me and I will try to answer them as best as possible. Get ready for tomorrows "Thoughtful Thursdays" post. I was shocked that we received only 11 link posts this past week. I hope to see many many more of wonderful gestures this week that people are doing for others.
Also, if you have prayer requests, please email me and don't put them in the comment sections. I may not get to them right away, but I will try to be as quick as possible in posting them on my Twitter/Facebook accounts for everyone to see and pray. If you emailed me and I have been slow in getting back to you, I apologize. I have been overly busy with my new job ;)
Thank you everyone for all your thoughts and prayers.
God Bless,
56 comments:
congrats on the new job that is awesome
I'm glad Kayleigh is doing so well! I will pray about her surgery and about your housing situation. Take care! :)
I don't know if this would be helpful, but if your bank has been bought sold or whatever, ask them to produce the note. The original promissory note on your house. If anything it will delay your foreclosure. I don't know if its too late, but I thought I'd mention it. Keeping you all in my thoughts.
The Sadler's
Good luck to you guys! I hope and pray that the doctors decide not to do the nissen. It's a very controversial surgery with many negative side effects and unfortunately doctors tend to use the "she'll already be under anesthesia" excuse often. My daughter has a nissen (twice actually) and it's been a literal life saver but she also has significant aspiration. If it were not for the aspiration I can't imagine putting her through the surgery and the months of painful retching and gagging that followed. I pray that God will give you wisdom as to which direction to go with the surgery and that if it's truly necessary she will have a quick and speedy recovery and be spared from so many negative side effects.
Wow, what a great turn around she has. I remember going to your blog around the middle of December and things just didn't look good, reading your words that day about not ever hearing her voice or seeing what color her hair would be etc. its just amazing what prayer can do.
Wow. I don't even know what to say except that you if you & Aimee are feeling uneasy about the Nissen procedure, you MUST speak up and demand a clear explanation. I agree that at this point unnecessary procedures are not worth the risk, whatever the risk may be.
I'm also sorry to hear you will not be able to save your house. Hardly seems fair.
Adam,
Please contact the social worker at your hospital. Medicaid should not be taking this long to approve your application! Our son was approved within 2 weeks! Please follow up with them! Perhaps they lost your paperwork?
YES, PRODUCE THE NOTE! it delays the foreclosure process for months because they have to produce the ORIGINAL document you signed and it most cases it is lost in all the sold paperwork of the loaners. A judge will not foreclose a house to a bank that can't prove you owe them and that one piece of paper is the only proof they have. It was just recently in the news that this is working for hundreds of families and with 9000 foreclosurers daily, it gives families time to either catch up or sell.
I just wanted to mention that when David had his Nissan surgery done, they told me that sometimes the button will cause the reflux. I also wanted to add that David had his GTube inserted, the nissan performed, and inguinal hernias repaired, and we were headed out the door for the very first time, just thirteen days later. So I don't think that having this surgery will prolong that process for you.
Anyways, she looks amazing as always.
Don't do the Nissen on your little girl just because she "might" need it later! What a crock- to say since she is already under anesthesia to just do a medically unnecessary procedure! I know many moms of preemies who got the Nissen and the gagging and retching is aweful. They can no longer burp or vomit! I just can't believe they would push something like that on her when she doesn't need it. It's controversial even on kids who aspirate let alone on kids who don't!
Jamie
Beautiful picture... Kayleigh sure looked so normal in the bouncy chair. Hang in there and you all will pass the hardships in flying colors soon. You all are in my prayers and I plan on checking this blog as long as you all maintain this blog. Wonderful and beautiful blog. thank u for sharing. Love from our family to your family
I will pray that God gives you the answers you need for Kayleighs upcoming surgery(s).
On another note, I started my own little 'Cards for Kayleigh' on my 'other' website and yesterday I sold my first set of cards and I put a little thing at the top to show how much I've got for her. So far only $9.46 but after a few more days I'm hopeful it will rise and I can send you all some much needed money. Here's the site: http://www.gettostampin.blogspot.com. I hope this is a way I can help you all out. I want to do something for this amazing, strong little girl and her wonderful parents and sibling. ;-)
Love, Julie Pizzitola
Go with your gut.
Just wondering what type of doctor is saying Kayleigh "might" need the Nissen surgery. Can you insist on a pediatric G/I to evaluate her? I agree with you, these explanations are just not clear.
I'm still praying in Bama! Follow your gut about the surgery--it sounds like you already feel like it's not a good thing to do to Kayleigh. Stand your ground! If there's no reason for it, then don't do it!
Hi, I have been following your story and have been praying for your family!! The picture tonight was so cute!! My two sons have cystic fibrosis and when my first son was born he had a blockage in his small intestin and had to have surgery when he was two days old. He ended up staying in the hospital for almost 4 months. Lots of one step forwards two steps back type things on the recovery part. The blockage was how we found out about the cystic fibrosis. They also wanted to do a Nissen on my son just because "alot of cf kids need it at some point so we should just do it now" We went back and forth thinking the doctors knew what they were talking about but something in my gut told me it wasn't right. We finally put our foot down and said no and if he did need it later we would get it then. I am happy to say he is 9 now almost 10 and he never needed it. Why put them through more than they need to when they have gone through so much? Anyway I know my case was different than yours but my only advice is to go with your "gut feeling!!" The doctors don't know everything. I will be praying for you and Kayleigh!!
Well I don't know what to tell you about the questions about Kayliegh's care but to pray about it and your instincts won't lead you astray. Also maybe you could talk to the doctors a little more in depth about it and why they feel it is necessary to do it. Honestly right now my little one is fightig reflux and if someone gave me the chance to fix it I would. I hope everything works out with your house. It would be wonderful if you could keep it. You never know you guys have done so much good I only hope that you are blessed again.
Hey guys just letting you know you're still in my thoughts and prayers. Glad to see Kayleigh so happy. What an encouragment to ya'll during the rest of the turmoil you're going through. I know a few other people already said it, but don't let the doctors bully you into doing something you don't feel is right. They aren't always right either. If you don't think Kayleigh should have the Nissen, stand up for her....she can't speak for herself! I'll be praying about that!
Just curious if you could explain..is the Nissen procedure permanent or can it be reversed later if she doesn't need it after all? Also, does that mean she can never throw up or burp for the rest of her life with this procedure? Also, are you still planning on posting a video of the trach changing? I would be interested in seeing how its done! Thanks and God Bless all you Freemans!
Yes ... ask your lender to "produce the note". Especially if your loan was sold from one bank to another : )
Praters and Hugs!!
~Patty
A Fundoplication saved my boys. I only wish I would've done it sooner to save the other.
http://millsblessings.blogspot.com/2009/03/reflux-sux.html
They have no complications from it. I am thankful for it.
I wish you all the best. I am so very happy that you got your new job I wish the best of you and your family. I will keep you all in my toughts and prayers. Could you let Kayleigh know my little girl likes looking at her pictures. Well God love you all and I wish you all the best. From Kim and family
Hi again,
I sent you a link a couple of posts ago about www.parent-2-parent.com/forum and they have a forum that is especially good for parents whose kids are facing the Nissen surgery. They can ask questions of veteran parents and get the pros and cons. Honestly, it can cause a lot of problems and in my opinion it should only be used to stop aspiration or other life-saving things. She will not be able to burp or vomit when she needs to, and her stomach will hold a smaller amount of food. Many kids have a hard time recovering from it. It can affect motility. It also has a very high rate of failure, and more than half come undone after a year and have to be redone. Sometimes they only come partially undone. And then there are the kids that get the surgery and they do absolutely fine.
We chose *not* to get the surgery for our daughter even though the surgeon was saying we should. Our daughter had severe reflux which is one reason she needed a gtube-- she didn't want to eat because it hurt too much before she got diagnosed and treated. She still has reflux at age 5 but I'm SO glad we didn't do the surgery!! Her reflux is controlled well with meds and she's even weaning off the meds! And eating well and all that. She's almost not needing her tube anymore. I have heard miracle stories about the fundoplication and I have heard horror stories. That's why I have concluded that parents should at least get a set of criteria from the doctor about when it's necessary and when it's not. Also be sure to get a second opinion from a GI doctor.
It is definitly true you should most definitly ask the bank to produce the note...we did a story on that last night and they say that because banks have been sold and all that fun stuff it might be lost. They have to prove to you that they own your house.
http://www.abc15.com/content/news/investigators/consumeralerts/story/3-words-that-might-keep-your-home-out-of/Y5dOGZKtmEa80bOAQfWWCw.cspx
Here this might help go here and watch the story. Then ask the bank to produce the note. It works. Praying everything works out for you.
What an awesome little girl. I am so happy to read that she is doing well.
When our triplets were born nine weeks prematurely in 2004, and spent several weeks in the NICU, there was a baby girl in the incubator next to us. The parents had named their little girl "Joyous Miracle" because she weighed in at 15 ounces > less than a pound > at birth.
When we went to the NICU reunion the following year, Joyous Miracle was there. We missed the next few reunions, but we went this past year when our triplets turned four, and there was Joyous Miracle, running around and playing with all of the other children. Such a joyous miracle, indeed!
Your precious Kayleigh is in my prayers.
Kayleigh looks great! I agree that the medicaid shouldn't be taking this long...I'll be praying that they get their butts in gear! I'm also praying something will turn up with housing. I'm with everyone else...trust your gut! You two have been right on most of the time and there is no sense on doing the surgery just because she MIGHT need it later. IF she needs it later, take that hurdle as you need to. Still praying like mad for you guys!
I saw on GMA the other morning about telling the people you pay your mortgage to that you want them to "Produce the Note". I know someone above said something about it. I don't know if it will help you guys or not, but GMA said that most people who told their mortgage people this, they had an extra few months (like 6-8 on average!!). I think it would be worth trying if possible!
If not, I have a friend in Concord who has a house "For Sale By Owner" and they would probably work with you....I go to church with them!
I am a lurker, but I thought I would mention the Obama stimulus plan. Have you checked now that all the details have been released on the housing package, as of yesterday? Banks are pretty much required to help, from what I understand, to bring your payments within 31% of your income. Just something to check on. It may help you save your home, which I know would be very important to you and your children. Praying for Kayleigh.
Amy in Minnesota.
Hi, I have been following your story and have been praying for your family!! I cannot even begin to imagine what you are going through with loosing your home. I don't know if this works or not but it's definitely worth looking into to help buy time before foreclosure. Check out this news clip from CNN: http://www.youtube.com/watch?v=YUZdANb6UaY i saw it on Good Morning America the other day and it seems to be working for others. Good Luck to you!!!
Freeman's:
I am so glad Kayleigh is doing so well. Whatever is decided on the procedure I know will be the best one (I will start praying for this). I am so glad home is gettign closer in Kayleigh's site everyday. I think the day she does come home i will be crying like a baby with so much joy. I know God is going to continue to work in your lives and bless you - Look how much he has already blessed with little sweet Kayleigh. I appreicate you guys opening up to us. I beleive God has brought every follwer to this site for a reason and your family contiunes to amaze me day in and day out with your faith and love. Look forward to more wonderful news soon.
Please do not do the surgery. My little boy is three and has had terrible reflux since birth. They wanted to do the fundoplication surgery on him and still do. I am totally against it because of all the horrible things I have read and heard about it. I would rather control it with medication. There are many choices of medications that work well. We use prevacid now, and have used reglan, mylanta, and zantac. I just truly believe that there are other ways than a MAJOR abdominal surgery to control reflux, especially since she is not having trouble with it. It seems crazy to do something so drastic just for the heck of it. Please express your concerns and go with your gut. That has been my tactic all along with my son. I feel confident with my decision. Hopefully you will too. By the way, she is beautiful!!
Kayleigh is looking great....she is such a beautiful blessing!!! Congrats on the new job. Keep the faith.
Praying for Kayleigh and family in NB, Texas
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! :)
Kayleigh is so cute in this picture:) Praying for her and your family.
What a fantastic picture!! I can't wait to show Sam.
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!!!
Jennifer in SC
Hi I have been reading originally getting here from the Riggs blog.
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.
It took 2 months - it was very difficult surgery and is controversial.
The Nissen came "undone" when he was 11. Now we just to prilosec or aciphex if he is feeling bad.
I would offer for you to ask for another opinion from a peds gstroenterologist that is well known.
Prayers continue.
Adam and Aimee,
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.
Good Luck!!!
God bless you always ...
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?
anyway, it is only my 2 cents, but if you don't have peace that means a lot.
Just so happy for your family....congratulations on your job and thank God Kayleigh is continuing to improve--she is so beautiful!!
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!!
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!
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!
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.
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.
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.
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!
Katie
Baltimore, MD
Im so happy to see little Kayleigh get along. Can't wait to see her go home!!!!!
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!
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! :)
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.
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!
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!
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!
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.
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!
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.
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.
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.
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.
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.
Good luck!
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.
My prayer are with you all, I have been there and even though it is hard it isn't forever.
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.
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.
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.
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.
If you ever have the time to look it up I highly recommend it. It has saved my life many times!
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.
I am praying for Kayleigh and your entire family!
Amber Schmidt
Lexington, Kentucky
http://family.kentuckystudio.com
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