Okay, today was a busy day and my head is spinning in a million different directions. Aimee and I have been faced with a tough decision, but we feel God is leading us in the right direction.
We sat down with one of our neonatologists, our cardiologist NP, our primary nurse and a couple other NP's and discussed a new medication that will take place of Kayleigh's Flolan, which treats her Pulmonary Hypertension. The name of the medication is called Remodulin. Unlike the Flolan's three to five minute window in case something goes wrong with the central line, the Remodulin has a four hour window to fix the line. This will help us stay a little more calm when she comes home and we can get to the hospital in time if there is an emergency.
Now here is where we need your prayers. Beyond the new medication CHOP (Children's Hospital of Philadelphia) mentioned, the main doctor there said they complete the Nissen procedure on all of their pulmonary hypertension neonates. We mentioned before that if Kayleigh does not have reflux or and aspiration problems, then we don't need to do it. But, no one mentioned that if Kayleigh develops reflux down the road that the aspirations can tear down her lung tissue, that may cause Kayleigh to need a lung transplant.
We thought about these last couple weeks and how everywhere we turned, someone was talking about Kayleigh needing the Nissen procedure. Now when her belly blew up to cancel the procedure the other day and now a hypertension specialist mentions the Nissen procedure, we feel that God is telling us something. So, we feel it is in Kayleigh's best interest to go through with the Nissen procedure, risking the negative issues of the procedure that will occur upfront, just to prevent a bigger issue (lung deterioration/lung transplant) down the road. We completely trust that God is leading us in the right direction.
Since Kayleigh is going to have the Nissen procedure done, she will get the g-tube placement instead of the PEG. The reason for this is because Kayleigh will have to have a three inch incision for the Nissen and they will just do the more invasive g-tube procedure at that point since she will be already open. It doesn't make sense to do the PEG microscopically when they will have her already opened up.
Tomorrow morning, they are going to complete the biopsy to either determine or rule out Hirschsprung's disease. If we get the results back the same day, the doctors will complete the procedure on Monday. If they don't get the results back, they will be doing the procedure on Tuesday. Here is where we need your prayers the most. If Kayleigh's biopsy comes back positive for Hirschsprungs, they plan to complete a colostomy surgery and they will do this next week when they do the Nissen and G-tube procedure, pushing the bilateral hernia repair to a future time. That may mean we will have to stay in longer to recover and to wait for a future surgery to repair the hernia's.
AHHHHH! This is enough to drive someone insane, but we are being strong and praying that everything is working the way it is supposed to. Poor Kayleigh has been through so much and just when you think she is getting close, more things seem to pop up in the way. We just need your prayers that these procedures are the last of it. I really feel we are close to getting her home and we need to all pull together and pray our hearts out.
Thank you all for being there for us through thick and thin, but we need you all now more than ever before. Please pray that Kayleigh does not have Hirschsprungs or anything major that may cause her to have another procedure. Pray we can tackle the Nissen, G-tube and Hernia procedures and get her out of there. She was so precious smiling and playing with her rattle today. I am so tired of seeing her sick and recovering from yet another procedure. It is time to bring her home, so please pray hard with me this is the end of the NICU journey and our new life can begin at home.
We love you all!
God Bless,
70 comments:
We are praying for your little cutie! I know it has been a tough road for all of you but God has you all firmly in His grip and He alone knows the timeframe! I know she will be home with you soon.
praying.
praying...as a fellow preemie mom to 3 you are handling this amazing. i am in awe of your strength....
You guys have such amazing faith and courage. I will continue to pray that things go well and that Kayleigh gets to go home VERY soon. You guys are doing a terrific job and you have inspired so many people.
bless your hearts...so many things, and i'm certainly praying for wisdom and peace...and for strength and healing. you all have a journey and i'm thankful that you are finding the strength and decisions in the lord.
I was nervous too about them doing a Nissen on Abby, but the surgeon strongly recomended it.
Looking back I now believe the nissen saved Abby's life.
I will keep you all in my prayers.
Keeping you all in our prayers
i will definitely be praying for all of you, especially Kayleigh. i'm 22 and still having a hard time recovering from my brain & abdominal surgery nearly 4 months ago (i'm writing a "series" about it on my blog right now) and i can't even imagine how poor little Kayleigh feels having all this done to her. please let us know the date & time of her surgeries when you know them - i'd like to be praying during them. but i'll start the prayers now! :-)
- michelle
As always, you all are on our minds and in our hearts.
Love the Nadeaus
Please accept my prayers from Australia. I am about to head out the door to my own daughter's baby shower. Sarah Lulu
praying for everything to go smoothly and that Kayleigh will be home in no time!!!! :)
Praying for His plan for Kayleigh, and your comfort.
Barbara (Lee) Lyman :-)
Marysville, WA
Many prayers for you guys as you go through this tough time.
Praying for Kayleigh and her family! That God will keep you all strong, climb yet another valley so you can feel what it's like to get her home and be on top of the mountain!
Dear Lord: NO HIRSCHSPRUNGS please! Bring complete healing In Jesus Name. AMEN!
lots of prayers for your little peanut! be strong!
shannah from Mich :)
Praying with ALL my heart!!!!
your kayleigh is so beautiful and god is holding you all as you go through this time together. keepinmg you all in our prayers. blessings, mari
This is crazy! A vicious cycle! You've got my prayers lifting Kayleigh up to God's HEALING hands so she will be recovered SOON. Perhaps the constipation is from all the pain meds & NOT Hischsprungs ~ Let's hope that's the case! :) God KNOWS Kayleigh has had enough w/Nissen & Hernia being the end... May this be the case! May you all be able to leave TOGETHER after this surgery. Only He knows what's best & I have Faith He is taking care of all of Us! Get some Rest, Clear the brain & You'll be ready for Monday! :)
Love,
~Joni
She is such a beautiful girl. Thinking about all she has already gone through just brings tears to my eyes. I hope she gets to go home with you very soon and doesn't need any extra procedures to prolong her stay!
Praying for Kayleigh's Dr.'s & nurses, that God will guide and lead the hands of the surgeons that will operate on Kayleigh's fragile precious body. God knows this body for he created her. Praying that your sweet angel will come through this as the trooper she is. Praying for comfort & peace for you, as you make some hard decisions in the upcoming days--decisions that are a part of God's promises.
Hang on there Kayleigh! You are almost there... so close. Gosh, this story is heart-wrenching and keeps me awake at night. I just pray for peace, wisdom and God's love all around you.
God Bless.
You are constantly having to make life-altering decisions. I don't know how you do it. Well, yes I do. Because GOD knows you can, you will.
God,
I just place Kayleigh in your hands. Guide the surgeons' hands and hearts. Be with the Freemans and make them strong in You. Please allow Kayleigh to continue to receive your mercy and miraculous touch. Get her home with her family as soon as you see fit. And allow us to get our knees dirty constantly for this precious little earthly angel. Thank you, God, for the Freemans. Thank you for their faith, strength, and hope in a world where those things are so few and far between.
Amen
Aimee and Adam: Phil. 1:3
ps that first photo Kayleigh looks so frightened it makes me tear up...
Adam and Aimee, has anyone offered an option to do the nissen and g-tube procedure laproscopically? Our son had his nissen and gtube done this was and also had the nissen tightened without a major incision. I know not all doctors do this procedure this way, but it's worth looking into because it reduces recovery time greatly!!
God Bless you all, Kayleigh is in good hands, the hands of the Lord. You are listening to His direction and He is in control! I pray for an Easter miracle for you all! Your little angel is beautiful and touches my heart so deeply when I hear her story! I know that God has a plan for her! You are all in my prayers!
It's so hard to think of what all this little lady's been through already and now she's got more to deal with. Luckily, she's got the greatest family in the world and God on her side.
I may have missed an update somewhere, but was anything ever determined about her vision? The last I read, they said they didn't think she could see at all, but in her photos, she's really looking and I'd bet money that she's seeing what she's looking at.
Lots of prayers and positive vibes for Kailey and her family.
Your story has touched me so deeply, I am praying for your little girl and will continue to keep your family in my prayers every night.
praying! I hope she makes it home by her first birthday! she's such a strong little girl!
Oh my goodness she’s precious and getting so big! We’ll be praying :)
First off, thank you all for your thoughts and prayers. It means a lot to us to hear your comments and know you all are pulling for us.
Here are answers to some of your questions...
Kerrie - Thanks for the info. We will check in to it, but I am not sure if they do it. Our surgeon doing it has been around for a while, but they have never mentioned laproscopic.
Deb - We are waiting to get more answers later on the eyes. There are other things that need to be taken care of before she can go home and unfortunately, if her eyes are a problem, there really isn't anything we can do right now. Although, I don't feel she is blind because she squints when the lights are turned on. She may have bad eye vision, but nothing glasses can't fix later.
Joni - She is no longer on any pain meds and she is never frightened in Daddy's arms :)
God Bless,
Adam
She is so beautiful and you guys are so amazing. I hope you know how blessed you are that the Lord trusted you enough to care for such a precious little girl. Don't ever doubt your instinct :) Because when you do the lord generaly slaps you in the face with the right answer :) At least that Is how I feel when things like that happen to me. You are making a wise choice. I am sure it is scarry to think of but she will pull through like a champ!!! You are always in our prayers :)
PRAYING! I'd rather her be there longer if that means she can be "fixed". Dont want to take her home before her issues are worked out. We pray for her non-stop!
Hang in there, we'll sure keep Kayleigh in our prayers. Have been following your blog for a while now and are amazed at the miracles taking place in Kayleigh's life.
My son was a 26 weeker, 1 lb 11 ou. Now is about 15 months,at home and doing pretty well. He is on a lot of oxygen and not really progressing to get off anytime soon.
He has a G-tube, Nissen, and also a colostomy. Although the nissen has definitely caused some major gagging issues, we feel it has saved his lungs from possible aspiration as well which would be detrimental to his poor lungs. Tage got a colostomy at one day old. He is scheduled to get it reversed on April 30.
If you have time you can check out our blogs...www.tagenator.blogspot.com I post mostly photos on our blogspot but have written more informative journal entries throughout our entire NICU experience at www.caringbridge.org/visit/tagedaniel
Take Care and God Bless
Justin, Kolby, Tage, and Huntlie Carrier
Bozeman Montana
"Go with your gut!" That's God speaking to you...! Sounds like you guys are making good decisions and I continue to pray that all will go well for your PRECIOUS baby! Praying in Kansas;)
I am praying fiercely for your beautiful precious Kayleigh. Your twitter messages come through my cell phone and unfortunately my web wasn't working, so I rushed from an appointment (and LA traffic) to get to my home computer. I have no doubt that God has a plan and that the end of your NICU journey will come to an end soon and home sweet home with your complete family is on the horizons. Stay positive, believe! believe! believe!
Kayleigh's a very strong fighter.. and soon all these procedures will be over. All those medical terms can seem frightening and worrisome but trust that God has blessed these doctors with the knowledge to help Kayleigh.
We'll be praying fiercely EVERYDAY till Kayleigh is out of the woods and more so when she is playfully being adorable in her later years.
All Our Love
Analiza and The Bernat Boys
Praying for you and all the trials coming and the praises too. Stay strong. :) God bless you all!
My daughter has a Nissen and I really think that it helped her more than it hurted her. Trust that you made the right decision. Praying for Kayleigh to be home very soon.
I am always praying for your little girl! I love the first picture of her in Daddy's arms.. she looks too sweet.. like she knows a secret and she's not telling!
I sent your package off this morning, and I have told it to race Kayleigh home.. lets see who makes it first...
Kerren
South Africa
Sending warm thoughts and prayers for you both and sweet little baby Kayleigh.
Wow - I had not stopped by in a while. She is getting big! Praise God. And I'm definitely praying as you make more difficult decisions.
I think you made a great decision. I'm praying for your sweet girl today.
We are still praying hard for your sweet little kayleigh!!!
Blessings,
Alyson
http://wellensfamily.blogspot.com
My fingers are crossed and you guys are always in my prayers. Kayleigh is such an amazingly strong little girl- she will pull through all this with flying colors, I'm sure of it :) I just want to once again comment on you and Aimee's strength- it is also amazing. When my kids are sick with the flu or anything my heart just breaks for them.. I cant imagine what you guys have gone through in the last year but your attitudes and trust in God has made me such a stronger person. Love you guys
Lisa
We will stand together and believe that the Lord will bring her through all this and she will go home VERY SOON with her parents. Keep the faith!
Praying in New Braunfels, TX
Freeman's:
I hated to hear that she was going to have to have another procedure but it sounds like this is the best thing for her. You know I was just thinking maybe God postponed the procedures earlier this wk to make sure that this extra one gets done also to get her home SO VERY SOON!!! God has everything layed out for Miss Kayleigh and I know she will come through all this with flying colors. I am praying hard for this biopsy today to come back negative and for everything to go well next Monday or Tuesday. Please keep us updated on the biopsy results and the date of the surgery when you guys know. I loved the pic of Kayleigh on the shoulder (2nd one) looking at the camera. I know she has vision!!! Have a wonderful day.
You've got my prayer.
Hey Guys- We have a daughter with a g-tube (it was placed as a PEG- but then after 3 months, was replaced with a button). We made the wrong decision in NOT getting the fundo. We kept thinking our daughter would grow out of the reflux (and related issues) but she is now 3 and we are worse off than we were when she had the g-tube placed. From what I've read, the younger the surgery is done, the less wretching, vomiting, etc... is done (because the body can adapt much better and the babies don't fight it as much) By the time they're eating orally, they know what their limits are (as opposed to a 3 year old over eating or eating something that triggers wretching)
Go with your gut on what you need to do! Don't worry about what people will say about you making this decision. If it saves your daughter 3 years of pain, pneumonia, and sickness (like my daughter is in)-not to mention the hypertension- it will be well worth it....Plus, like you and others have said, it could save her life. PRAYING FOR PEACE OVER YOU ALL!
~Katie
Continuing to pray for you guys! Hoping for a good weekend for all!Take care and give Kayleigh lots of smoochies!!!
Erika from IL
Praying hard. As you know we are looking at similar issues with Sidney not being able to eat, and possibly a g-tube if we can't get him to be able to take anything thicker then breat milk. We love you and pray daily for your entire family.
Katie A.
It seems like a sign that Kayleigh's surgery will be during Holy Week. It is a week that leads to great things through God and praying that it will lead to great things for Kayleigh and her final surgery.
He has truly been with you these 9 long months, may he now lead you home at this most Blessed time of year.
poor baby girl~will continue to pray for all the tests to come back a big fat negative..i am just so sorry for yet another bump in the road.
Okay! I have made up my mind! She looks like AMY! hehe She is so precious! It is so good to see her sweet face!
I am praying for you all!
Sweet baby Kayleigh's family, I have been following your story through the girls on babycenter and have only recently followed twitter. I have a 5 month old baby boy and I wish you all the health and happiness that I do for myself. You have a fighter and I believe she will pull through this and with God - she will do good things. In my prayers,
April -
www.alt-ourhiddentreasure.blogspot.com
God picked EXACTLY the right parents for Kayleigh....don't forget that HE chose YOU to take care of her. You are doing a GREAT job of this little miracle baby.
Prayers as always.
~Christa
www.quintooples.com
Praying!!!
Prayers being said my way!
i think it is wise u r doing the nissen procedure i left a comment for aimee on facebook awhile ago about my lil boy who was born only 6 weeks early and didn't develop reflux until we got home from the hospital...my friend who had a 1 lb 9 oz baby was the same way didn't develop reflux til he got home after a couple of weeks...praying for kayleigh everyday!
It sounds like you are making the right decision for Kayleigh's future by doing this procedure. I can only imagine how scared you must be to face more procedures but lets hope with these last procedures it will bring Kayleigh home. We all want her home with her family. We continue to pray for Kayleigh
Katie
Baltimore, MD
Praying and praying with all my might!!!
Lori (mommy to a 25 weeker)
Kayleigh is so beautiful! Oh my gosh she brings a smile to my face :) I'm glad she is doing so well lately.
Praying for good results on everything!
Goodness..she is such a doll!
Praying God's will be done. XOXO!
Praying for your family! Kayleigh is such a fighter and she will get through this!
Still praying for your little peanut! Hoping all goes well and she will be home soon :-)
Laurie in SD
My son was born three months early and had to have the Nissen with G-tube sugery done for severe reflux. It has been the best thing we have done. I will pray that God leads u in the direction that is best for ur princess. God Bless!
Praying for God's will to be done, and to provide the strength you need in these next couple of months!!!
Kayleigh and family,
You will all be in our prayers. I came across your blog and video and my heart just goes out to you all. God is an amazing God and has a great plan for you. What a precious baby!!
She is looking so good! We're always praying for Kayleigh and you guys. What ever happened with your house? Did you all get foreclosed on or where you able to get out of it? We were praying hard that you'd be able to keep your house.
oh i am SO glad that the biopsy was negative!!! Ive been praying so hard that it would be. our prayers were answered again! God is great.
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