Thursday, July 29, 2010

10 Years Together

Today I am celebrating ten years of marriage with the man who God hand-picked for me to share my life with. On a Saturday in August 1999, I met him the first day on my college campus after praying that God would bring me a Christian friend. I was thinking of a girl, but little did I know He had other plans.

Mark and I hit it off from the beginning, learning that we had a lot in common such as our faith, working at summer camps, an interest in missions work, and music. I was a music major, and we played in the marching band and concert band together. I was also looking for a church, so he invited me to his and began picking me up every Sunday. We became involved in the same campus ministries, and soon we were spending nearly every waking moment together. What started out as an awesome friendship turned into romance, and we made our relationship official in November of '99.

We were engaged in March of '00, and married July 29, 2000. I was 19 and he was 21. We were young, but felt strongly that God had led us together, and His blessing was on our marriage. The story of our life together was just beginning.

Over the next four years, Mark finished his degree in Information Systems and joined the workforce, and I finished my double major in Music Education and Flute Performance. In November '03 we were surprised and delighted to find out we were expecting a little firecracker, due in July. Just two weeks later we found out we had miscarried, but already loved that baby so much, and in our hearts had become a mommy and daddy. At the end of January '04, we found out God had provided us another Little Miracle, due in September. That was the beginning of the chapter in our story called Parenting.

We had our first son Caedmon Sept. 22, 2004. Then in January 2007 we were blessed with another wonderful son, Jayden. In Dec. 2008 we found out we were pregnant again and learned in March '09 that our baby was a little girl. We had no idea that we would only have her for 26 weeks in the womb, before she went to heaven. Then began the chapter of Grief.

In October 2009 we learned we were pregnant again with our son Benjamin, and learned during the pregnancy that we are both carriers of the Cystic Fibrosis gene. Ben was born June 21st, and officially diagnosed with CF July 6th at 2 weeks old. Now we begin a new chapter with him.

Our story these first ten years hasn't turned out exactly as we had imagined. It has been filled with a lot more heartache than we would've guessed, but still so much joy and so many amazing blessings along the way. We've learned to be there for each other, help each other, and be patient with each other, and most importantly we've learned that when it's more than we can bear on our own, God is always and forever enough! We have learned so well the meaning of these verses read at every wedding.
Ecclesiates 4:9-12
Two are better than one, because they have a good return for their work: If one falls down, his friend can help him up. But pity the man who falls and has no one to help him up! Also, if two lie down together, they will keep warm. But how can one keep warm alone? Though one may be overpowered, two can defend themselves. A cord of three strands is not quickly broken.

Two are certainly better than one, I could never do it without my husband by my side, leading and loving our family, providing strength when I have none. And the third strand of the cord is by far the most steadfast, as we look to God when we come to the end of ourselves.

In these ten years, we have learned so many things. A few are:
*laughter can fix anything,
*always smile and give each other a hug during the first five minutes together at the end of the day, it makes all the difference,
*romance can come in all kinds of ways, even if it's just having the energy left after all the kids are in bed to talk over a bowl of chocolate ice cream
*The deepest form of love looks different than you would think, and often takes the shape of two broken people holding each other through their tears

Mark, thank you so much for ten years of traveling this road side by side, I look forward to living the rest of our story together!

Monday, July 19, 2010

Thoughts and Test Results

Today we got the results back from Benjamin's stool sample that showed that he is pancreatic insufficient. This means that the thickened mucous caused by Cystic Fibrosis is blocking his pancreas from being able to release digestive enzymes needed to break down his food. We had already started giving him extra enzymes before each feeding these last two weeks, so this just confirmed what we already suspected. Still, somehow hearing the definitive answer just made my heart ache today.

I guess in some ways, maybe I've been a bit in denial about the disease, because my little guy just looks so healthy and perfect. To hear his test result just further confirms the reality of his situation, and while he is doing well, it just hurts to think of him being so dependent on these daily regimens to keep him healthy, and ultimately, alive.

One of my primary feelings after losing Eliana was disorientation. It was like our lives were headed down a certain path, and then all of a sudden the path dropped off into a black hole, only to come out again on an entirely different path.

I can't say that feeling has left me entirely, and maybe it never will. At times now, my grief over Eliana, and Benjamin's diagnosis seem intermingled. One has flowed so quickly into the other, and it is just a lot to experience in the span of a year. Knowing CF is a life-shortening disease, coupled with my all too recent first-hand knowledge of what it's like to lose a child is sometimes just too much. Even though modern treatments are significantly prolonging the lives of CF patients, knowing what it would be like without all the extra things available scares me. I really can't bare the thought of ever losing him, and can't allow my mind to go there.

After Eliana's death, so many things we were dealing with just seemed so surreal. Walking out of the hospital empty-handed, walking into a funeral home to make arrangements for our daughter, and so many other things. Now, I again have that feeling as I feed applesauce mixed with enzymes to my newborn before every feeding just so he can digest his food, and as I "thump" him on his back, sides, and chest twice a day, to loosen up mucous, and ultimately to keep him breathing. I just have to think of it on a day to day basis rather than the long-term, because the reality is, I am saving his life a little bit every day.

I think of the passage in 2 Cor. 10 that talks about taking every thought captive to make it obedient to Christ. I know thinking negatively about these things is not good for Benjamin or me, and isn't pleasing to the Lord. I have to constantly give these thoughts to Him, and ask Him to help me see it through His eyes. I'm sure this will always be a battle, but I know I can trust God to carry the burdens that I so often try to shoulder on my own.

One thing about CF is that I really don't know Benjamin's prognosis, because research is being done every day to improve the outlook, and it continues to look brighter every year for CF patients. They even think they are close to a cure, and until then they are coming up with drugs that are extremely effective in fighting off infections and keeping the lungs clear. With all of this in mind, there is no way to know what lies ahead for Benjamin, so I am going to pray and believe for the best.

Today, though, I am just weary in my frail humanity. Tired from a year+ of grieving, and not seeing an end in sight. I love this little boy as much as humanly possible, and really wished I could have spared him this disease. Still, I have to believe that God's plan is always best, and I pray we will be able to glorify Him in this. Our greatest prayer for Benjamin is for him to grow up to love and follow God, and to live his life to the fullest for Him.

I've been thinking a lot of Eliana today. Mark and I were noticing as Ben was sleeping how much he reminds us of her, his mouth, chin, cheeks, and today even his eyes when they were closed. Each of these babies a gift from God, so precious to Him and so dearly loved by us.
Lord, thank you for all of our precious children, hold them in your hands, bless them, and may your will be done in and through each of their lives.

Here's a sweet picture of Ben looking at Eliana's bear. It now belongs to him, a gift from his big sister in heaven.

We do not...grieve like the rest of men, who have no hope. We believe that Jesus died and rose again. 1 Thess. 4:13-14

Know therefore that the LORD your God is God; he is the faithful God, keeping his covenant of love to a thousand generations of those who love him and keep his commands. Deuteronomy 7:9

Thursday, July 15, 2010

Time Flies

I can't believe how quickly the last 3 1/2 weeks have flown by since Benjamin was born! I guess I had forgotten just how very full each minute becomes with a newborn! We have been keeping very busy these days just taking care of these three precious little ones that God has blessed us with.

On June 27th, when Benjamin was 6 days old, Caedmon was baptized, and my husband had the privilege of doing it. Caedmon told us that he wanted to let everyone know that he had decided to follow Jesus! The water was too deep for him to stand, so Mark just dunked him in his arms. What a special day in Caedmon's life and ours.

We celebrated the 4th of July with my family. Here is Benjamin in a celebrating mood.

The kids had fun playing Nin.tendo W.ii, watching fireworks, and doing sparklers.

Caedmon and Jayden have had swimming lessons each morning these last two weeks. Caedmon has become quite the little swimmer, and Jayden has gotten more comfortable in the water than ever.

We've all been having fun getting used to our new little guy, and his big brothers love him to pieces! Good thing he has two warriors around to love him and look out for him!

Here are a few more shots of the most lovable baby boy in the world:

Ben has been doing so great. He is an awesome little sleeper. Most nights he has a long stretch of sleep that ranges from 5-7 hours, and then he always goes back to sleep for 2-3 more hours before he eats again. He does have kind of a bad habit of staying awake a lot during the morning and afternoon, and napping in the evening so his actual bedtime usually starts pretty late. But I can't really complain too much! He's been smiling more and more lately, and has seemed to smile even from birth. Yesterday he made his first cooing sounds during our appointment at the CF clinic. What a sweetheart. Every time he smiles it almost makes me cry because I know just how precious and fleeting these moments are, and how blessed we are to be having them with him.

In relation to CF, he is also doing great! The dietitian was really impressed with his growth yesterday. He gained 14 oz. in a week, and is up to 9 lb. 8 oz. I feel so much better about his health now that he has a little more chub like his brothers did. His lungs are clear, so he really is a healthy little boy right now and we couldn't be happier! He is still dealing with some stomach aches and we're trying to pinpoint the cause, but that is our only issue right now, and is likely just normal newborn stuff, not necessarily related to CF. We have another appointment at the clinic next week to track his growth again. We're praying for his continued good health and rapid growth.

Friday, July 9, 2010

A Good Night's Sleep

Just wanted to say, after a rough evening for Benjamin, he slept all night, from 11:45 until almost 7, and he's back asleep now! That is a good sign that his little tummy was able to stay satisfied that long, and now Mommy feels better too after getting some much needed rest!! A good night's sleep makes all the differene. Now, off to swimming lessons.

Thursday, July 8, 2010

Starting Ben's CF treatments

This week has been such a whirlwind of activity, and now, a moment of quiet to reflect. My two big boys are tucked into their beds, and Benjamin is sleeping on his Daddy's chest while he watches TV.

This week, through a series of three different tests, Benjamin's diagnosis of Cystic Fibrosis was made official. Wednesday he had the sweat test, the standard way to diagnose the disease because people with CF have more sodium chloride in their sweat.

I took him to the hospital, where they attached electrodes to his arms that would send a small electric current into him to cause him to sweat in that area. This had to stay in place for five minutes on each arm. It was hard to see him hooked up to those electrodes, as I tried not to imagine him being hooked up to medical equipment in the future, suffering complications of CF. To make matters worse, I had to hold his arm out straight the whole time, and he cried and cried because he didn't like the feeling of confinement.

After the time was up they put a gauze strip on his arms to collect the sweat, and wrapped them both in plastic for ten minutes. During that time I got to wrap him up in a blanket while he nursed, so the bad part was over.

We received the positive results a couple hours later when he went to the regular ped. for his 2 week appointment. A level greater than 60 is considered a positive result, and his was a 94 on one arm and 106 on the other. After receiving the genetic results, this didn't come as a big surprise, but it was deflating to get that final diagnosis.

Yesterday Mark, Benjamin and I had our first meeting with the Cystic Fibrosis team of specialists that he will see throughout his life. We spent the morning receiving a lot of information, and came away feeling encouraged. To start with, we are treating the two main symptoms of CF: digestive and lung problems. Benjamin has been doing pretty well over all, but he had been nursing very frequently, and then having frequent large stools to the point where I was feeling depleted, and wondering if he was really digesting all the calories he was taking in. So, they started him on a digestive enzyme called Creon. He takes a little bit of it with a tiny amount of applesauce before each feeding. With CF, the pacreas often becomes insufficient because of secretions being too thick, and that is what they think was happening with Ben. They are testing a stool sample to be sure, but wanted him to start the enzymes right away so he is able to absorb what he eats.

We found out his weight to height ratio is only in the 22nd percentile, and they like to see CF kids at the 50th or above. I was told that sometimes kids come in for the first time, and they are below the chart. If I hadn't been nursing him frequently on demand, they thought he would be doing much worse. Finding this out was the saddest part of the appointment, because it was the first time we had to realize he was already suffering some of the effects of the disease. Since starting the enzymes yesterday, I feel better because he has been lasting longer between feedings, and seems more satisfied. Before, anytime someone would hold him against them, he would automatically start bobbing his head like a little woodpecker trying to find a nipple to latch onto!

Relating to digestion, he also has to have a liquid multi-vitamin every day, and 1/8th tsp salt. So far I haven't succeeded with the salt. I'm supposed to give it to him little by little over the course of the day by dipping my finger in and putting a little on his tongue. The first time I tried it today, he gagged and spit it back up and then refused to nurse. I'll try again tomorrow, starting with a little less on my finger.

So far his lungs sound clear, but we've started chest therapy as a preventative measure. For 20 minutes twice a day we have to pat him in different spots on his chest and back to loosen up mucous.

So, that's the gist of it so far. Today was the first day doing his treatments, and aside from the salt it has gone fine. Three of his feedings were still only two hours apart, and they prefer I stretch him to 2 1/2 or 3, but it's still an improvement from before.

It's definitely overwhelming, and right now I'd have to say we're pretty much in survival mode. Going on very little sleep, and just doing the next thing that needs done at the moment as the day progresses (while many things are left undone.) I'm sure we'll get down to a good routine soon, and I'll start breathing much easier when he begins to grow and hopefully put on a good amount of baby fat. That's our number one prayer request right now, along with just getting into a routine where I can manage Benjamin's needs while balancing it with the needs of my other two children. I really want to have quality time with them and provide them an enriching environment, but I know that will come with time.

I'll close for now because this post has taken longer than expected and it's gotten late. What began as peace and quiet lasted only a moment, and was interrupted by my three year old getting out of bed several times, Benjamin crying with a bad stomach ache, and my husband's announcement that a Pull-up went through the laundry and all the clothes are covered with particles. Hopefully I can get this little guy to bed, so I can rest up for another eventful day! Oh-and I also had the bright idea of signing the boys up for early morning swimming lessons for two weeks, so that's the first thing on the agenda for tomorrow.
If anyone wants to know more about CF, the best source of accurate info is

Thursday, July 1, 2010

Our Sweet Ben

I wanted to write a post today, updating about our sweet Ben, and how well he's been doing, how much we've been enjoying him, and what a blessing he is. All this is very true, and so much more could be said, but unfortunately I have a different post for tonight.

We had a busy day today with a portrait sitting, visiting my husband's work to show off the new baby, a trip to the park for the big boys to play and ride bikes, and then out for ice cream. In my rush to get out the door for the photo appointment, I had forgotten to grab my cell phone, so when I got home this evening, we had messages on both our phones. Some were from the pediatrician's office, so I knew they might have gotten the results from Benjamin's newborn screening and called back right away. I had to leave a message, and then waited for the return phone call.

The phone nurse told me that the genetic test results had come back, showing that our son has two copies of the mutated gene for Cystic Fibrosis, indicating that he "most likely" has the disease. I was confused at first, because I had been told that first we would get the results from the newborn screening, that if positive would only tell us that he was either a carrier or had the disease, and we wouldn't know which until we did a follow-up test. She proceeded to read the letter to me word for word, which indicated that he had failed the initial screening, so they had already done the follow-up genetic test, and the result showed him positive for Cystic Fibrosis. I was completely unprepared to hear this news. The tears began as she continued explaining that the office will call us in the morning to talk to us about scheduling the next step in diagnosis, the sweat test, which will be done at the cystic fibrosis center. How I had hoped never to step into that place.

So, an official diagnosis won't be made until the sweat test, but with a failed newborn screen and a positive genetic test, we just have to come to terms with what we're most likely dealing with.

My first reaction is just to look at him and cry. He is so beautiful, so perfect, fearfully and wonderfully made. How can he really have this disease? I hold him and wish that I could transfer every defective gene from his body into my own. How can this be? And how, after last year, can we again be faced with such a devastating verdict for one of our children?

Tonight, I can only say, Jesus is the same yesterday, today, forever. He is the same God we were praising in the hospital upon Benjamin's safe delivery, the same God whose goodness I felt in its entirety as I gazed at him for the first time. Is He any less good in light of this? The supernatural peace He gave us about Benjamin in the last couple months of pregnancy still remains for us to take hold of. There is a reason that the peace I felt was not the assurance that Ben wouldn't have CF, it was the assurance that the God we serve is loving, and great, and strong, and that His grace would be sufficient for us in any circumstance. My hopes were high for a healthy baby, but he is here safely in our arms, and he is in the hands of the Almighty God whose plan for Benjamin was written out before he, or I ever came to be.