The difference a year makes!

One year ago today, Dan and I took Luke to Tampa for a sweat test that was inconclusive. We thought we were going to have to wait months to know if he had Cystic Fibrosis or not. But then, we walked across the street to the Pulmonology clinic and sat down with Luke’s wonderful medical team who explained his genetics results. We had our answer. They gave us a 3-ring binder full of books and information and recommended that we not tell anyone until we’d had time to process and learn about the disease. We drove home in shock. The sorrow and fear we felt are hard to describe.

A few months ago, I was playing dinosaurs with Jake while Luke napped. I glanced up and realized that the Christmas cards I hung up last December were still on the wall. l wondered how in the world I had missed them when I put away Christmas stuff and in every single month since then. After Luke’s diagnosis, there was so much to do. All the typical newborn stuff of course. But also lab tests and doctors appointments and battles over pre-authorizations and medical bills. I had so much to learn about CF and medications and treatments. I felt this strong urge to DO something, so organized a Great Strides team and worked to raise money for a cure. I read every blog I could find about CF and parenting with CF and surviving after the diagnosis. I started my own blog (admittedly I have not kept up with it very well!) hoping to gain some perspective and record our journey.

In all that busy, I had just been surviving. Head down, getting through each day, one thing at a time. I didn’t want to make a single mistake, or miss a single thing, because it was at Luke’s expense. I learned as fast as I could. I cared for my family and tried to keep up with my home and meals. I was exhausted. I was overwhelmed. I struggled to balance the worry and sadness and anger I felt. And then, one day, I looked up.

The cards still hang on my wall. I decided to leave them for now as a reminder of what I realized that day. I don’t feel worthy or smart enough or strong enough, but I was chosen to be this mom. God trusted me with these handsome boys of mine. With this life I live today. He gives me strength when I wonder if I can manage it all. He comforts me when my heart is breaking. He reminds me to trust Him because there IS a bigger picture that one day I will understand.

I wish I could tell that woman I used to be one long year ago that it is going to be ok. That it will all get easier with time. That mistakes are inevitable. That perfection is impossible. That mourning is completely normal and even healthy. That Luke is stronger and braver than could be imagined. That Jake will adjust to not being an only and will love his brother. That God will provide before we even know what is needed. That He does not leave me to walk one step of this journey alone.

“So be strong and courageous! Do not be afraid and do not panic before them. For the LORD your God will personally go ahead of you. He will neither fail you nor abandon you.” (‭Deuteronomy‬ ‭31‬:‭6‬ NLT)

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Jake. My super hero 4 year old.

I wrote this for Jake for his birthday. I try to do one annually. I hope to give them to him in book form some day when he is grown:)

Dear Jake, my brave strong smart handsome little man, how a year has changed you! I look at you and see glimpses of the man you will be some day. It both swells my heart with pride, and brings little tears to my eyes.

This year, you became a big brother. To say that it was a big change for you is an understatement, but you handle it like a pro! So well that Luke adores you. When he hears your voice he looks for you and smiles brilliantly when he finds you. You play so well with him and ask to hold him at least once a day.

You also became the proud owner of an aquarium this year. You love to sit and watch your fish and your recently added frog swim and jump and play. You named them all with fun names like The Land Before Time and Spiderman and Fire Wad.

You beg to be outside all the time. You love lizard hunting and bug catching and bird watching. On the weekends we often go fishing and while daddy gets your line ready, your play with the lures. You have a collection that you carry with you all over the house. We go for walks and you collect rocks and sticks and feed the horses and moo at the cows. You still like to hold my hand sometimes and I don’t take that for granted because I know it won’t last forever. If daddy is with us we will pick you up and swing you high and you will beg for more and more and more. You like to push your brother in the stroller even though you aren’t quite tall enough to see where you are going yet.

You still love your dinosaurs and play with them almost every day. You discovered chapter books recently and are on the 15th of the Magic Treehouse Series. These books have opened up whole new worlds of knights and ninjas, travel and pretend. You are always going on adventures these days with your “friends” aka whatever toy you are currently holding. You pretend to be Spiderman and “shoot out a web to catch the bad guys”. It’s our favorite game to play when we go for bike rides and you are on your police bike. I love your imagination so much!

You have so much faith and innocence and goodness. I am so proud of you. Don’t look back my little man! There are amazing things to come in front of you:) xoxoxoxoxo

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Great Strides 2014

On May 3rd, the day of Great Strides, there was a 70% chance of rain. I was so bummed. I had pictured the day in my head, and it definitely didn’t include rain. I started to pray that the rain would at least hold off for the walk. We bought panchos to hand out and told our family and friends that it was still on. We hoped some of them would be brave enough to walk in the rain with us, but we weren’t expecting big numbers. We worried over taking our boys out in the weather, but decided that getting wet would not harm them. We came up with a plan to keep them as dry as possible just in case. We went to bed with everything packed up and ready to go. We woke to the sound of torrential rain. I just kept praying:

Lord, you know my heart. I have looked forward to this day for months. Help it to go just as it is supposed to, even if that means it is just the 4 of us walking.

As we made the drive across town, the rain slowed to a sprinkle. It sprinkled for awhile here and there, but the heavy rain held off all morning. We can save the panchos for something else;) My God is awesome like that.

I had absolutely most definitely NOT prepared myself for the emotional aspect of the walk. Especially when we arrived and saw that every single person we expected was there. And then some. My heart, which was already full from the entire fundraising process, just about exploded when we all stood together for our team photo. Some day I will show it to Luke and tell him how very much he is loved. He was so adorable. He cried every time our team cheered. Which happened to be a lot, because we were the top fundraising team for Lakeland! Luke’s Skywalkers led the walk, and, I have to tell you, it felt amazing. We were DOING something to fight Cystic Fibrosis. And not by ourselves. With our friends and family by our sides. Tears steamed down my face as we walked around the lake. There is no greater gift anyone could ever have given me than to stand with my family on that rainy day.

Our pictures aren’t sunny and perfect as I had pictured, but they are better. We made memories and new friends. We watched the mayor designate May 3rd as CF Awareness Day. And thanks to my sweet friends, Jake sat in a fire truck, something he loves beyond explanation! It was an amazing day. A powerful day. I just know my God has my Luke in His hands and amazing things are yet to come for him:)

Thank you so incredibly much to those who walked with us. And to those who donated. And fundraised. Your kindness to my family will never be forgotten. You made our first Great Strides walk absolutely perfect!

We have so many fun ideas for next year! But for now, I’m just reveling in the awesomeness of this year’s:)

Kindle Fire HDX 7″ Giveaway!!!!!

It is hard to express in words what it means to us to see and feel the love and support of our friends and family during a time that has had it’s tough moments for us. Thank you seems so trite. But we say it and mean it from the very deepest part of us. We love our boys so much that we can barely contain it, and there is nothing more amazing than seeing other people love them too. Thank you so much for all of the likes and shares and comments and donations and joining with us to support Luke.

In order to give back in some way, we have decided to donate a Kindle Fire HDX 7″ Tablet to be raffled off to someone who joins or donates to Luke’s Skywalkers. We hope that you know our hearts, and that we are forever grateful for your support.

To be entered in the random giveaway, you can:

1. Sign up to join Luke’s Skywalkers to help us raise funds for our team. Team Members are invited to walk with us on May 3rd at the Great Strides event in Munn Park in Lakeland.

Or

2. Donate to one of our team members. Every $10 you donate will give you one chance at winning the Kindle Fire. Please be sure that your name appears next to your donation or that you message me so that I can include you in the giveaway.

You can find our team sign up and donation page here: http://fightcf.cff.org/site/TR/GreatStrides/36_Florida_Tampa?team_id=16701&pg=team&fr_id=2042.

The giveaway will end on May 2nd, 2014 at midnight and the winner will be notified.

Here are some facts about the Kindle Fire that I copied these directly from Amazon.com. I am really excited about this!

  • Exclusive 7″ HDX display (1920×1200), high pixel density (323 PPI), and perfect color accuracy (100% sRGB) for vivid, lifelike images that go beyond standard HD
  • The fastest processor on a 7″ tablet—powerful 2.2GHz quad-core processor and 2GB of RAM for fast, fluid multi-tasking, gaming, and video
  • Introducing the “Mayday” button—revolutionary, on-device tech support, exclusive to Kindle Fire HDX tablets. Connect for free to an Amazon expert 24×7, 365 days a year
  • Stay productive on the go with ultra-fast web browsing, built-in OfficeSuite, and updated e-mail and calendar support for Gmail, Outlook, and more
  • Immersive entertainment experience—see trivia and character backgrounds with X-Ray for Movies and TV, follow along with lyrics with new X-Ray for Music, fling videos to your TV with Second Screen, and more
  • Over 100,000 apps and games available in the Amazon Appstore, including a new paid app for free every day
  • In addition to Free Two-Day Shipping, Prime members can stream tens of thousands of Prime Instant Video titles at no additional cost, over half of which can be downloaded to the latest generation of Kindle Fire tablets.

 

D-Day

On November 12th, 2013, at just 2 weeks old, Luke was diagnosed with Cystic Fibrosis. That day was the start of a new journey for my family. One that we did not ask to take, but that we will walk with strength and faith and purpose anyways. Because God is the same yesterday and today and forever. He will never let us down. We will “Rejoice in our confident hope. Be patient in trouble, and keep on praying.” (Romans 12:12 NLT)

At 13 weeks pregnant, Dan and I found out that we were both carriers of CF and that Luke had a 25% chance of having the disease. That means he had a 75% chance of NOT having it. We were hopeful. My OB asked if we would be interested in speaking with a Genetics Counsellor about the disease and testing process. We were both carriers. Our children might be carriers or even have the disease. It seemed like a good idea to learn more about it. Some people speak with Genetics Counsellors because they are trying to decide if they want to terminate their pregnancy. That was never even a slight possibility for us. We chose not to have prenatal testing done because it put the baby at risk and the outcome would change nothing for us. We worked hard for this sweet little miracle baby. We were most definitely keeping him. The Genetics Counsellor taught us about DNA and how we each had 2 CTFR genes – one of which was normal, and one of which was mutated. The mutated gene was recessive – meaning that the normal copy cancelled out the mutated copy. But if a child of ours were to receive a mutated copy from each of us, he would have Cystic Fibrosis. Two mutated genes together would create a protein in the body that would make the mucus thick and sticky rather than thin and slippery as it should be. The thick sticky mucus would clog the lungs and pancreas, causing respiratory and digestive issues.

On November 8th, when Nancy called to tell me that Luke’s newborn screening was abnormal, I had no idea how much I would grow to appreciate her knowledge and help in the coming months. She very gently and kindly explained to me that an abnormal newborn screening was not a diagnosis. It only signaled that further testing needed to be done. She scheduled Luke for a Sweat Test at Tampa General Hospital followed by an appointment with a Pediatric Pulmonologist at USF Health. She told me that we should know the results that day. So we waited. And we prayed.

I was so tired that day on the drive to Tampa. Because of the itching, I had rarely slept for more than 2 hours at a time for the last month of my pregnancy. And I had a 2 week old newborn who needed to be fed and burped and changed and rocked every 2-3 hours. A schedule that I found extremely difficult to keep up with in the registration offices and labs and waiting rooms and examination rooms of a hospital. It was a very long day.

The sweat test is the standard method for diagnosing CF. People with CF don’t reabsorb the salt in their sweat ducts as they should, which makes their sweat extremely salty. So the lab technician put a chemical and a muscle stimulating device on both of Luke’s arms that was designed to make him sweat. While it sat for the required hour, Dan and I grabbed a quick lunch as Luke napped in his carrier. When we returned to the lab at the specified time, the technician told us that Luke had not produced enough sweat to evaluate the salt content. We were upset. We had hoped to have results that day. She told us that this happened often with young babies and that we should try again in a month. The waiting had been so hard. We weren’t looking forward to more of it.

We made our way to the Pulmonology Clinic across the street for our appointment with the specialist. They reiterated that the sweat test had been inconclusive because not enough sweat had been collected. But then they showed us Luke’s newborn screening results. The screening test looks for a protein called immunoreactive trypsinogen, or IRT. This protein is released from the pancreas, and is found in higher levels in newborns with CF. If this level is high, then a follow up DNA test is done to check for the dozens of CF gene mutations that have been discovered. Luke had one copy of the same gene mutation that I had, and one copy of the mutation Dan had. Two copies meant that he had the disease. We sat there in absolute shock. Dixie, the Nurse Practitioner who had told us this, left the room so that we could have a few minutes. I recently read an article that said that parents go through stages of grief just as people who have lost a loved one do when they find out their child’s diagnosis. I think that Dan and I are actually still wandering through those stages. But that day we were both instantly in denial. The staff at the clinic were absolutely wonderful though. They patiently explained that Luke would see a team of medical staff at every appointment he had there, and then they all came by to introduce themselves. Two doctors, a Nurse Practitioner, a Nutritionist, and a Social Worker. They will be helping us keep Luke healthy. The very best part though, was that every single one of them gave us hope. Not one of them talked negatively about Luke’s future. They told us that amazing things were happening in the world of CF research and that treatments were improving quickly and that a cure is not far off. They told us that Luke will grow up just like every other child – he will go to school and play sports and go to college and have a family of his own. They sent us home with a stool sample kit because they needed to test Luke’s pancreas to see if it was functioning as it should. Two weeks later, we returned to the clinic to find out that his numbers were extremely low. He was pancreatic insufficient. This meant that his body was unable to absorb fat and protein, leaving him hungry all the time. He was still gaining weight, but not as quickly as they liked to see. They gave us instructions on how to give him pancreatic enzymes with every feeding so that this issue would be resolved. I am happy to report that they are working beautifully. At not quite 3 months old, he has doubled his birth weight:) He also takes a medicine for acid reflux and vitamin supplements for the ones he has difficulty absorbing due to their fat content. He is completely on track developmentally and physically. We pray every single day that he continues on this path until a cure can be found.

The current average life expectancy for CF patients is the early 40’s, but this number continues to rise as better treatments are found. Dan and I both feel a very strong sense of urgency to do what we can to help fund research. We want Luke to have a full and long life. 40 isn’t good enough for us. We want a cure. Because of this, we will be asking for your help. We will be participating in a Great Strides Walk in May to raise money for CF research. Our team will be called Luke’s Skywalkers and we would love it if you could walk with us or donate to our team. I will be sharing more about it over the next few weeks as we get more information and iron out the details.

In the meantime, here is a link to the most reputable site available for learning about CF.

Cystic Fibrosis Foundation

The Story Of Luke’s Birth & Diagnosis

I have been working on this for months! Finally it is complete. You might want to grab a cup of coffee and get comfy. It’s a bit long;)

What a pregnancy it was! There were so many strong feelings along the way. Cautious excitement when we got our positive test, as my hormone numbers climbed beautifully, when we saw the little flicker of a heart beat for the first time, and when we finally made it through the first trimester. Thankfulness when peanut continued to grow and develop just as he was supposed to. Shock when we found out we were both CF carriers and that peanut had a 25% chance of having the disease. Joy when we found out we were having another son and that his bio scan was perfect. Overwhelming love when he sucked his thumb and smiled and waved as we watched through the amazing technology of ultrasound. Anxiety when at 35 weeks I started to itch from a condition called Cholestasis of Pregnancy. Like the kind of itch where I felt as if I were getting attacked by small stinging bugs. Non stop. On my feet and hands and arms and legs and eventually everywhere, except for my face. The condition affected my liver, keeping it from working properly, allowing bile salts to build up under my skin where they caused the awful itching. Fear when we realized that it was most dangerous for the baby, making his liver work before it was ready to, causing still birth in 10% of cases. We spent those last few weeks praying. Pretty much non-stop. And oh the absolute flood of relief when the day of my induction finally arrived. I desperately wanted my son out of my body, because it was no longer a safe place for him.

I was exactly 39 weeks, on October 28th, when Dan and I got up very early and headed to the hospital. We arrived at 5:40 a.m., but they didn’t have a room ready for us yet so we spent a few minutes in the waiting area. I remember joking with Dan that after all we had been through, it was either going to be an extremely complicated delivery, or a very easy one. He didn’t find me funny. They called us back around 6:00 a.m., and we went through the admission process before making our way to the labor & delivery room. A nurse got my IV started and filled out the rather tedious and lengthy medical history questionnaire. She hooked up the monitors for my blood pressure, the baby’s heart beat, and the contractions. For weeks I had been having contractions on and off, but was only dilated to 3 and 70% effaced. At 7:15 a.m., the nurse assigned to me for the day started Pitocin to induce stronger contractions. She reviewed my medical history with me again and scared me a bit. Because of a Staph infection that I had in 2010, she wanted to do a nasal swab to make sure the bacteria was not colonized in my nose. If I didn’t get an all clear, I would not be allowed to have an epidural. For one hour I was a nervous wreck. My birth plan most definitely included an epidural, so, I was thrilled beyond explanation when at 9:30 a.m. the results came back fine. I know that I could have done it without an epidural if I had no other choice, but I had done no preparation for going that route and it didn’t sound like fun to me. My nurse continued to up the Pitocin every 30 minutes, which made the contractions become stronger. At 9:50 a.m. the doctor came in to check me. I had never met him – we scheduled with the on call doctor since we were in a hurry to get our sweet babe out safely – so I was very relieved that he seemed to be very laid back and kind. He was much more knowledgeable about Cholestasis than my regular OB had been. He told me that my alkaline phosphate level was extremely elevated – a definite confirmation that it was in fact Cholestasis – and that I should have been taking a medication to help eliminate the bile salts which would have helped with the itching. Because I had so much built up, he warned me that it might be a few days before the itching improved. My platelet count was also very low from the months of baby aspirin that I had taken to maintain the pregnancy. But he assured me that they were just high enough for an epidural and a vaginal delivery. I was beginning to wonder if there was some kind of conspiracy against me getting an epidural! He checked me and I was 5 cm, 80% effaced, and -1 station. Progress! He broke my water to help move things along. After that, he didn’t want to check my progress often because of the risk of infection, so he told me to call if I felt pressure or the urge to push. My contractions were getting closer and more painful so I was really happy when my sister Tina arrived to keep me company. She & Dan helped me focus on something other than the pain. At 11:30 a.m. I asked for an epidural. Each contraction was extremely uncomfortable and I could no longer talk through them. At 12:00 p.m. the anesthesiologist came in to administer the epidural and all seemed to go well, but 15 minutes later only my left side was numb. It was very strange to feel every single thing on my right side, but nothing on my left. The anesthesiologist was called back in 30 minutes later and he gave me a second round of meds which took care of the problem. I really loved this epidural. Somehow even though I could feel no pain, I could still feel when I was having a contraction. Perfect conditions for pushing out a baby:) I told Dan & Tina to go grab something for lunch because I was starting to feel just a bit of pressure and thought maybe it wouldn’t be long. A few minutes later, I regretted letting them go. I called for the nurse and told her that I was feeling lots of pressure and a fairly strong urge to push with each contraction. She agreed to page the doctor, but she was noticeably skeptical about my progress. I was feeling very restless and trying to ignore it. Thankfully, Dan & Tina brought their food back to eat in the room because otherwise they might have missed it. At 1:15 p.m., the doctor came in to check me and was pretty shocked to find that I was 10 cm, fully effaced, and ready to push. I had tried to tell them! The nurse asked what station the baby was at and the doctor said +3 and maybe more! The head is right there! While we all sat there in stunned silence, the doctor and nurse disappeared. Later on I realized that they had supplies to gather, but at the time I was thinking… Where is everyone?! I need to PUSH!!!! Luckily they came back a few minutes later with everything they needed. Dan & Tina were as happy to see them as I was lol. The doctor let me start pushing {thank you sweet Jesus!} and with only 3 sets of 3 pushes my sweet baby Luke was out and crying. Born at 1:57 pm, he was 7 pounds, 3 ounces, and 20.5 inches long. I tore slightly so had to have 3 small stitches, but that was a walk in the park compared to Jake’s delivery. They put Luke in my arms and I prayed a little thank you to my amazing God for bringing him to us safely and perfectly. He latched and nursed like a champ, right from the start. Because of the Cholestasis, they tested him routinely for jaundice, but his bilirubin stayed in a very normal range. I was so relieved to hold him in my arms and to know that he was ok! We were both anxious to get home to Jake, so we asked to stay the least amount of time possible at the hospital. But because of a little miscommunication, we were not at all ready when early in the afternoon 2 days later, the hospital volunteers arrived with the wheelchair to wheel me out. We rushed around packing everything up and getting Luke dressed. In all the rush we didn’t take any pictures of Luke leaving the hospital in his cute outfit. I was very sad about that:( We did get a cute one in the carrier though so I will attach that.

We now just had to wait for the results of the Cystic Fibrosis portion of his newborn screen test. And even knowing that there was a 25% chance, it was still a shock to get the call on November 8th that his newborn screen came back abnormal. The sweet lady who called to tell me scheduled Luke for a sweat test on November 12th at Tampa General. It was a very long day, but at the end, we knew for sure that Luke does in fact have Cystic Fibrosis. Later I will go into more detail about that day and about what the diagnosis means for Luke. But in the meantime, he is doing great and we are excited to watch him grow, healthy and strong. We know that God has His hands on this miracle baby He gave us and that He has great things in store for Luke:)

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