I have been dreading typing this post. Somehow typing it in a post away from facebook is a little harder. Maybe putting it on the blog makes it that much more real...more hopeful that this was simply one of those bad dreams that takes a few weeks to escape from your memory. Unfortunately, that is just not the case.
When my angel, Gunnar Lane, was only a little over a week old we received a knock at the door. A knock that plays over and over again in my head. I remember sitting there looking at my tiny blessing thinking
how can this be? Below I will be posting the facebook posts that I submitted for all friends and family to see. The posts that started this whole journey...the journey to finding a cure.
July 9, 2012 -
Josh and I debated about making this public, but we quickly agreed that it was the right thing. We believe in the power of prayer. We need all our friends and family to come together and pray for our baby boy. We got a knock at our door this evening with results from Gunnar's newborn screening. Tests came back that he could possibly have Cystic Fibrosis. Our hearts are broken...we feel so shattered. It may be that he is just a gene carrier rather than actually having the disease or could even be a false positive. We find out tomorrow when we go to LeBohneur in the next couple weeks for further testing. Pray for our baby and for us to keep faith!!!! God is in control. Thank you and please spread the word to pray! Love, Megan and Josh
July 10, 2012 -
We will not have a LeBonheur appt. date/time until tomorrow. He can't be tested for CF until he is 4-weeks-old. Both Josh and myself have to carry the CF gene in order for Gunnar to have CF. If only one of us has the gene, Gunnar can only be a carrier but not have the disease. The next few weeks are going to be very long and tiring. We simply cannot wait 3 more weeks. Josh and I have decided to get screened for CF starting with me. I go at 2:00 to do lab work. We will not have the results for 5-7 days, but that is better than weeks. If positive, Josh will go in for testing. If negative, Gunnar can only be a carrier or was screened a false positive from the beginning. Regardless, Gunnar will still have to be retested at 4-weeks-old. Thank you to all of our prayer warriors. Please keep them coming. We feel your prayers. Don't stop praying for our gift. We love you all.
July 12, 20122 -
To our dearest friends and family, thank you for your continuous prayers and words of encouragement. Though Gunnar's story has just begun, he has already set such a powerful testimony for the world. I know he will be eager to share it with everyone when he utters his first words. On June 29th, we welcomed the most beautiful, perfect baby boy into the world after over 30 hours in labor. Josh and I prayed for this child from the moment we found out we were pregnant in hopes that he would be a healthy. Little did we know God had a plan for our child that would far differ from most his age. He was sent to us for a reason and to touch the lives of many. Now for how the journey truly began...As most new mommies can relate to, this past Monday I was sitting in a chair in my living room watching reality television reruns at 4:00 in the afternoon with not a stitch of make-up on and not even a shower for the day holding my tiny blessing. I get a knock at the door only to see a woman dressed in scrubs holding a clipboard. "Hello, I am from the Health Dept. and we have received your newborn's health screening. Gunnar, right?" My heart sunk. I knew...I knew this couldn't be good. The rest is history. We were told that we wouldn't know anything until Gunnar was 4-weeks-old. Little did we know that a second test was done to look at my baby boy's DNA, so the test I had done to check to see if I was a carrier on Tuesday...pointless. (Yes, very frustrating.) Late yesterday afternoon I got a call from North MS Pediatrics. "Megan, I feel like you should know these results. If it were my daughter I would want ther to know. Gunnar's IRT (blood elevation) for CF scored a 296. Normal range is 90."
Pure silence. I mentioned how he still could be just a carrier and the doctor responded, "2-3 years ago new technology allowed for a second test to be done. The lab in PA did a DNA analysis and 2 copies of the CF gene were passed to Gunnar. One from Mom. One from Dad." From that very moment...our lives changed. We were devastated. We fell to our knees and asked God to place his healing hand on our child. It was then that we realized we couldn't lie down...nor would we. We had to be strong for our baby. God knew when I met my amazing husband 6 years ago that we would be sent a little angel from Heaven that would need us, depend on us, and look to us for support. It is our job to do just that. No, it is our privilege. LeBonheur called this morning only to confirm Gunnar has officially been diagnosed with Cystic Fibrosis. Both Josh and myself are ready to fight this battle. We need you to join in on this journey with us by praying for our child. He is our blessing...our blessing from God, our Father. We go to Lebonheur Monday @ 12:30 for a very long and tiring day to start treatment. Again, thank you for loving us and praying for us...but most of all, thank you for praying for Gunnar. I am in the process of designing a t-shirt in Gunnar's name. All money will go to finding a cure for CF. I will keep everyone posted. Love to all. In His Grip, Gunnar's Mommy
July 14, 2012 -
I received my lab results today a little earlier than expected. Though at this point they aren't really helpful, it did confirm that I am indeed a carrier of CF. I couldn't help but feel a drop in my stomach when I read "Lab Results" on the subject line in my inbox. As I took a deep breath and clicked on the keyboard, I couldn't help but think maybe it was some mistake and the word ..."negative" would be seen in big, bold letters at the top somehow. Unfortunately, that just wasn't the case. According to the lab in Memphis, I am a carrier of the DeltaF508 gene which seems to be the most common CF mutation based on the little amount of research I have gathered (or should I say crammed in) since this whole nightmare bagan. We are unsure as to which CF gene Josh carries. LeBonheur will most likely be testing us both again on Monday unless they already know through Gunnar's initial screening which is also very likely; however, the pediatrician here said she couldn't find it anywhere on his results sheet. Please continue praying for our gift. His little face is changing every single day. He is so handsome! I have to say he is looking more and more like his daddy. When he smiles, I see his "Deuce" (my brother, Michael Gibson) which isn't such a bad thing either. ;) Watch out, girls, I gave birth to a STUD (who has the cutest toes ever might I add!). I'm already planning routes and getting my camouflage gear ready to stalk him from afar when he goes out on his very first date. (hehe) I know, I know...he is only 2-weeks-old. I'm getting a little ahead of myself, but when you're this cute...LeBonheur Monday @ 12:30...bring IT on! We are ready to fight this battle with every ounce of energy we have until we find a cure! In His Grip, Gunnar's Mommy
July 16, 2012 -
Our cars are packed up, and we are headed home after a very long yet very productive day. We met with a pulmonologist, CF coordinator, respiratory therapist, and dietician during today's 4 1/2 hour visit. We carried in our notebooks full of written questions and left with not a one unanswered. The CF team was very impressive and we learned more than we ever thought possible in an afternoon's time. As mentioned in a previous post, I am a carrier and passed on the DeltaF508 mutation. Well, we learned today that Josh carried the exact same mutation, so Gunnar has a double copy. We also learned about a study that is being done that is currently at the end of Phase 2 (3 phases total before a new drug can be released) that is for his mutation that can significantly improve his lungs if not even reverse the disease in the future. Though we are so very exhausted mentally and emotionally, we feel so energized and READY to fight. Where does this feeling come from? God Almighty!! He has our sweet baby in His care and for that not only are we thankful but also at peace. A cure WILL be found. We just know it! Our faith is in the Lord above. Due to being an infant, we will not begin with aggressive treatment to start off. The doctor has placed him on digestive enzymes which are added to his formula. He also has to take liquid vitamins. Another interesting thing is SALT! He has to take 1/8 tsp. daily in his formula. Lastly, we will have to administer pats (CPT) on many different positions of his body to keep the mucous from building in his lungs. All of this will become a routine for us within time. It is our new normal...if there is such a thing. As he gets older treatment will increase depending on Gunnar's symptoms and his little body's response to the disease which is only determined with time. More waiting.....which means more patience. We can do this. God promises He will not give us any more than we can handle. We were told Gunnar can play any and every sport he can! The more...the better! Get ready because I'm pretty positive the NFL has already got him as future draft top quarterback pick. ;)
So much information. My hands can't type fast enough. All we know is God is in control...and that in itself is enough. Thanks to each of you for your prayers, love, and support. Please keep them coming. In His Grip, Gunnar's Mommy
July 17, 2012 -
I just had what my beautiful aunt, Sue Ann Lockard, calls a "God wink." Today hasn't been a "strong mommy" day for me. I heard all day little angels echoing over and over again in my head, "Megan, HE never said it would be easy. It is okay to cry. HE is with you every step of the way and loves Gunnar even more than you do." Being the stubborn little mama I am, I just couldn't wrap my head around it... Nope, not today. Walking into Lifeway on the look-out for a book a sweet friend suggested me read, I see a precious store employee with big brown eyes who asks if I need any help. Not even knowing where to begin my search I responded, "Yes, please, I am looking for a book called..." We get to talking and of.course I have to brag about my handsome prince, and she shares a story of a baby she knows who has CF and goes to church with her. As my eyes filled up with tears listening to her speak she says, "We will be praying for you. Would you like for me to pray with you now?" Wow. I've never had a stranger ask to pray with me! What courage and strong Christian faith this girl has...and what a "God wink!" God knew I needed someone to grab ahold of me and pray that very minute. I feel so loved. Gunnar's story is not only touching others daily but his very on mommy as well. What special baby this child is! I'm so in love. So in love with God's never-ending love and so in love with my tiny blessing. Though I can't physically reach out and touch Him or sit in His lap when I need a moment to cry, He is there shining His light through the prayers and voice of a complete stranger. ;) How's that for a God wink?
July 19, 2012 -
Gunnar is 3-weeks-old today! Where has time gone? We had our 1st pediatrician visit today. Doctors were initially concerned with his weight loss. He weighed 7 lbs. 6 oz. at LeBonheur on Monday. (His birth weight 3 weeks ago was 7 lbs. 13 oz.) We now weigh a whopping 8 lbs. 5 oz.! That's almost a whole pound in less than 4 days! God heard our prayers!! OH, and did I mention he is in ...the 95th percentile for height?! That'd be those Gibson genes right there now! ;) We had also noticed Gunnar showing difficulty breathing when taking a bottle. He wheezes to the point we have to take multiple breaks throughout feeding time. The doc ran a catheter through his teeny nose to check his passageways. All clear! He simply is still practicing to breathe bc he didn't have to use his cute button nose when he was growing in my tummy for over nine months. Doc says no worries there. :) OH hApPy DaY!! Tears of joy rolling off mommy's and daddy's cheeks! Glory be to God! Please continue sending prayers our way as we journey further into finding a cure for CF! God has some pretty exciting things in store for our baby boy! We just know it! :D
July 23, 2012 -
Alright, calling all friends and family...we need YOUR help! Team Gunnar is ready to rock! The Cystic Fibrosis 2012 Great Strides walk will be held on October 20th at Ballard Park in Tupelo, MS. Walk with us, help us raise money for CF rese
...arch, and spread the word to all you know! Please feel free to repost my status update. I have set a personal goal of $1,500 to raise before the big event, but I'm not stopping there!
Want to walk with "Team Gunnar?"
Visit: http://www.cff.org/great_strides/gunnarlaneherndon
& help us start raising money to find a CF cure TODAY! You can even set a personal fundraising goal once you sign up!
Can't make the walk? You can make a donation in Gunnar's name on Gunnar's personal Great Strides homepage at the link provided above.
I am doodling up Gunnar's t-shirt design this evening and will be posting ordering information at some point this week! The t-shirts will be $15 each. All proceeds will go towards finding a cure. All friends/family who are willing to help sell "Team Gunnar" t-shirts, please message me. Every helping hand we can get, we're ready to go! I am also in the process of setting up a site where t-shirts may be purchased online as well.
Remember me telling you about the medicine scientists are working on for Gunnar's mutation that could possibly even reverse the disease and/or its symptoms? It just so happens to be the most common CF mutation! Our money goes towards this study so that it can reach the final phase and be given to CF patients all around the world, including our precious Gunnar Lane! Together, with your prayers and support, we can make this happen!
Thanking you in advance for helping our baby boy and so many more! We love you all. In His Grip, Gunnar's Mommy & Daddy
July 24, 2012 -
Have you ever met anyone who inspired you to become a better person? I've had the privilege of meeting a few in my 25 years. Tonight I met a group of ladies who definitely did just that...inspired me. Inspired me to keep fighting, hold my h
...ead up, and know it is simply okay to cry.
This evening I attended my very first CF Great Strides meeting to discuss upcoming fundraisers, silent auction donations, sponsor suggestions etc. It was there that I met some of the strongest mommies I've ever met. They have inspired me to be not only a better person...but a better mommy. Not just any mommy...a mommy to Gunnar, a special being that was placed in our arms and made my heart stretch in ways I never thought possible.
You know, come to think of it...there a lot of things I didn't think were possible.
I didn't think it was possible to love to the point it hurt.
I didn't think it was possible that a newborn baby boy was capable of changing my life, my husband's life...my whole family's life in the way that he has in the wee bit of time he has been with us.
I didn't think it was possible to forget about the "little" things that just simply do not matter. There was a time I would cry over the most silly things. Maybe I couldn't find a cute outfit to wear to an event, or maybe I cooked an expensive recipe 30 minutes too long. No matter how small, I still managed to frown...as does anyone because sometimes at that very moment that "little" thing doesn't seem so little. In the big scheme of things, the "little" things just aren't important.
What is important? Our relationship with our Father. Every breath we take it a gift. The breaths we take, the moments we take out of busy day to let someone know you care, the "I'm sorry's" and "I love you's", the smiles to a stranger.
I didn't think it was possible my husband could stand the thought of changing not one...but a thousand dirty diapers in a day's time. Not Josh Herndon...but, boy, was I wrong. What at first seemed so yuck (for lack of better word), somehow wasn't so yuck after all.
I could go on for days.
Thank you, Gunnar. Thank you for allowing us as your parents to see beyond the "little" and focus in on the "big", the most important...how blessed we are to hold you in our arms each day, and thank God that He chose us to guide and protect you all the days of our lives.
Thank you to each of you who have already donated to our CF campaign. Your contributions have touched my family for a lifetime. Thank you for believing in God's special plan for our child and fighting with us. You do not what it means to us. Wow, I'm speechless. We have raised almost $500 in 24 hours. God is hard at work.
I did find out tonight that you may register for the walk on-site the morning of the event. It is of no cost to you. However, we would love for you to help us and join in on our efforts in raising money for CF research. If you would like to donate or join our team in helping raise money, please visit www.cff.org/great_strides/gunnarlaneherndon .
Goodnight all...got to get back to my sweet baby. I think I hear him calling my name. ;) hehe In His Grip,
Gunnar's Mommy
July 26, 2012 -
To our amazing, supportive friends and family,
I encourage each of you to watch this video until the very end. Every dollar earned and every contribution made goes towards finding a cure for my baby boy, along with 30,000 other CF patients
... across the country. I am inspired by the strength of the CF patients on this video including the mother who speaks so highly of both of her sweet children in admiration of their strength, determination, and efforts to keep fighting this terrible disease.
The newly developed drug, Kalydeco, that was released in January of this year is mentioned in this video. The drug given by itself is used to treat another mutation other than Gunnar's.
Drum roll, please...
(The following information I pulled from the CF foundation website.)
In June, Vertex Pharmaceuticals Inc. announced positive results from a Phase 2 study of its CF drug Kalydeco™ in combination with another potential therapy, VX-809. The results showed a significant improvement in lung function in people with two copies of the most common CF mutation, Delta F508, who received the combination treatment.
(This is Gunnar's mutation! He has two copies of the Delta F508.)
About 50 percent of people with CF in the United States have two copies of the Delta F508 mutation; an additional 40 percent of people in the United States have one copy.
Based on the data, Vertex plans to begin a pivotal trial of Kalydeco and VX-809 in people with two copies of the Delta F508 mutation in 2013. Pivotal trials typically gather data that could be used by the U.S. Food and Drug Administration (FDA) to decide whether to approve a potential drug.
Both Kalydeco and VX-809 are designed to treat the underlying cause of CF, a defective gene and its protein product, called CFTR.
“The improvements seen in lung function are very encouraging, and we are pleased that Vertex plans to move forward quickly with a pivotal trial,” said Robert J. Beall, Ph.D., president and CEO of the CF Foundation. “We still have significant work ahead of us, but the entire CF community can take pride in its role in making this important step possible. We thank the trial volunteers and their families, clinicians and scientists, and our dedicated volunteers and donors across the country.”
Now...tell hs mommy a cure is not on the way!!
With your help, we can make a difference! We, along with sevral other CF families, are looking for corporate sponsors, silent auction contributions, and donations to help raise money for research for our babies! If you or anyone else you may know would like more information on donating to our silent auction (held the day of the Great Strides Walk in October) or becoming a corporate sponsor, please email me at thegiftofgunnar@gmail.com or message me through facebook.
Donations may be made through our Team Gunnar website: www.cff.org/great_strides/gunnarlaneherndon
Thank you...thank you for fighting with us! Thank you to all our friends and family who have already donated. Josh and I can't tell you what it means to us. Gunnar is so loved!
Until a cure is found, we will "just breathe" and trust in God always. <><
"Let everything that hath breath praise the LORD." Psalm 150:6
In His Grip,
Gunnar's Mommy
