Happy Birthday!!

Owen is one month old today! It's amazing how time flies. I feel like we just brought him home from the hospital. We've really enjoyed getting to know our little man over the past month and can't imagine our lives without him.





Things you're doing now...

• You are still wearing newborn diapers (not for too much longer with that big belly)


• Newborn clothes still fit you the best, but you can wear a few 0-3 month onesies


• You are smiling a lot..especially in your sleep


• You go cross eyed when your trying to focus on things up close


• You are eating every three hours at 2, 5, 8, and 11


• You get the hiccups after almost every feeding


• You don't have a routine during the day, but you are staying awake a lot more


• Most nights you get up to eat and go right back to sleep


• You are still sleeping in your bouncy seat in your pac-n-play


• You like to be swaddled at night with your arms out


• You like to sleep with your arms straight up or with your hands by your face


• You have become very curious about your surroundings


• You are getting more head control...you can pick your head up and turn it while being held upright


• You love your car seat...so much that you fall asleep every time you're in it


• You are very loud...you are constantly grunting


• You have a lot of facial expressions and you really like to stick your tongue out


• You are constantly raising your eyebrows and wrinkling your forehead


• You are a very gassy baby...we can always tell when your tummy is bothering you because swing your arms around like you're swimming.


• You like going on strolls around the neighborhood but you fall asleep everytime

The day you arrived...... and one month later

We've been seeing a lot of this little smile lately and thought we would share

sweet dreams...

Owen's ACH Visit

This post is a long one because we learned a lot today and wanted to pass along what we learned. We tried to condense as best as we could, but... If it is too much just skip to the end and check out Owen's band-aid.

Today we went to Children’s Hospital in Little Rock for our meeting with the geneticist about Owen’s possible fatty acid disorder. Overall the trip was very informative and answered all of the questions we had. When we first met the geneticist he said that they are not sure if Owen has the disorder or not… Apparently the only way to know for sure is to test his DNA and take a skin sample to grow out and expose to very long chain fatty acids.

One thing we found out about the disorder is that kids with this disorder can appear completely normal and healthy, as in Owen’s case, until they get an illness such as the flu and cannot or will not eat for extended periods of time. When this happens if they are not properly cared for things can get bad really quick.

The geneticist also explained the disorder in more detail. The problem with this disorder is in the mitochondria where fatty acids are broken down. Very long chain fatty acids are in just about everything and are abundant in breast milk. In normal functioning mitochondria the fatty acids enter and move around in the mitochondria and are broken down into shorter chains. Once the fatty acids are broken down they can leave the mitochondria, enter the blood and are harmless. In Owen’s case the very long chain fatty acids cannot be broken down due to a missing enzyme, therefore they are released right back into the blood and these long chains can be toxic when they build-up. Because of Owen’s inability to break down very long chain fatty acids, it is best if we can restrict the amount that he takes in, meaning we have to switch to a special formula. Owen’s new formula contains 89% medium chain fatty acids, which are already in small enough chains that they are unaffected by the missing enzyme which is only necessary for breaking down the very long chain fatty acids.

They also opted to rerun the same tests that were done to lead up to this visit. It was explained to us that it is possible that his body may have corrected this problem on it’s own at this point and they wanted to double check since these tests were relatively painless. The final test was not so painless! They took a skin sample, meaning they took a 3mm diameter tube and cut a chunk of skin out of Owen’s hip. If you ask Owen though the worst part was the shot to numb the area. The tests that they are rerunning should take about two weeks to come back, a month on the DNA test and 2-3 months on the skin sample test. Hopefully as the results come in they will be good news, however the only test that will absolutely confirm that he does not have this disorder is the test that will take 2-3 months, so in the meantime we will make the adjustments and keep a close eye on our little man.

I think Owen was getting tired of waiting on the doctors

Owen wasn't crazy about having blood drawn, but I think he liked his Daffy Duck band-aid

Thanks for all of your thoughts and prayers

Update...

As we said in the last "update" post we have been waiting on results from Owen's latest labwork to determine if he has a "fatty acid oxidation disorder". Well the results finally came in today and apparently he does have one of the fatty acid disorders. The labs show that Owen has Long Chain 3-hydroxyacyl-CoA dehydrogenase deficiency (LCHAD). We are not sure exactly what this means for all of us just yet, but we have an appointment with the geneticist at Children's in Little Rock on Monday at 12:00 to hopefully find out everything there is to know about living with this disorder. From what we can find, it looks like the main treatment is adjusting diet and making sure that he never goes without eating for extended periods. These are not the results we were hoping to get; however, we are glad to finally know something and have a direction to go.

Meanwhile Owen is still looking great to us. He is eating well and either his clothes are shrinking or he is getting bigger... (We think he's getting bigger). He is the light of our lives and we are blessed to have him in our lives.

Thanks for all of your thoughts and prayers and please continue to pray for Owen's health and our ability to provide the best care we can for him.

Happy Easter

We usually spend Easter in West Memphis with my family; however, a four and a half hour drive with a 2 week old didn't seem like a good idea, so we did Easter in Fayetteville. My parents came on Friday to spend the weekend and celebrate Owen's first Easter with us. After being holed up in the house for the past two weeks, we decided to enjoy the beautiful weather Saturday and take Owen on his first stroller ride. We drove out to the Promenade and just walked around soaking up the sun. I think Owen enjoyed his first stroll...

Ready to roll

Owen soaking up rays

(don't worry we kept him shaded most of the time)

On Sunday, the weather was pretty much the opposite of what it was Saturday, cold and rainy! We braved the horrible weather and took Owen to church for Easter service. It was successful...he slept through the entire service and really seemed to enjoy the music. After church everyone gathered at our house to dye eggs and eat lunch. Lunch was great and afterwards everyone lounged around and watched the final round of the Master's.

Family pic before church

watching the masters together...

More Test Results

The nurse called today to let us know that she had received the test results from Owen's urine analysis. The results showed that 2 out of 15 of his urine test came back elevated for the fatty acid oxidation disorder. To be honest, we're not sure what this means. We're still waiting on one more test ( the acylcarnitine levels) to come back, and hoping that it's normal. For now, we're going to continue with what we're doing...meaning feeding at least every three hours. We have a doctors appointment with Dr. Froman on Monday morning and we're in the process of getting set up with a geneticist.

After talking to the nurse and reading everything that google has to offer about this disorder, this is what we know...There are many types of Fatty Acid Oxidation Disorders (FODs). Long chain 3-hydroxyacyl-CoA dehydrogenase deficiency (LCHAD) is the one that Owen may have. This means that he may be missing the enzyme needed to break down stored fat. So if he goes without eating for long periods of time his body starts working really hard to break down these fats and causes episodes of hypoglycemia. This is when he may present with lethargy, hypotonia, failure to thrive, persistent vomiting, etc. If he was to present with these symptoms, immediate medical treatment of IV glucose would be necessary. Management of this disease includes avoidance of fasting, aggressive medical management during illness, and a low fat/high carb diet.

Although all this testing has caused a lot of worrying, we are grateful that we're finding out now rather than later. We're going to continue to be optimistic until all the test results are in and we know what we're dealing with. Please keep Owen in your prayers.

2 Weeks Old!!

Our little man is growing up.

• Owen had his first official bath today since his umbilical cord finally fell off. He seems to be liking bath time a little more...it was the first bath we've made it through without him screaming. I think the combination of the space heater and actually sitting in warm water made it a lot more enjoyable.

• His favorite position is curled up on your chest where he can hear your heartbeat. He can sleep like this for hours.

• Josh and I love when he's awake. He just looks at you with those wide eyes and seems very curious...we can just sit and stare at him forever.

• We are breastfeeding most of the time, but Josh is bottle feeding 1-2 bottles a day (a little bonding time with daddy). Owen is doing great switching back and forth. I think the little guy would eat anything...he could care less where it comes from.

• Owen's new trick is peeing on daddy when he's changing his diaper. He hasn't shown mommy this new trick yet..thank goodness! (No pictures to back this one up, but trust us, it has happened!)

On our own...

Today was Josh's first day back at work for a full day. So Owen and I were officially on our own. Overall, I think it went pretty well. My goal for today was...to at least take a shower, change clothes, and put on make up. Showering while watching Owen was interesting. I waited until he was sleeping, then put him in his bouncy seat on the bathroom floor...and spent half my shower looking out to make sure he was okay. Lets just say that getting ready takes a lot more planning these days.

Is it possible for a 2 week old to be spoiled?? Because I think Owen is well on his way. With family being in town, Owen has been held a lot. So today, I made a point to put him in his bouncy seat or swing throughout the day. But Mr. Owen did not think this was such a good idea. He was fine with being in his bouncy seat or swing when he was asleep, but if he was awake he would cry until I picked him up. His little cry just melted my heart, so of course I picked him up and snuggled. I guess we'll just keep trying...

Sleeping in his bouncy seat

Josh and Owen with Drew and Charley

Update

No real update on Owen yet. Some of the results have come back normal, but those were the tests that we expected to be fine. There are still two tests out that we may not know the results of until late this week and early next week. In the meantime, Owen seems to be doing good to us. We had a Dr.'s appt. yesterday and Owen had gained another 3oz to surpass his birth weight for a total of 7lbs 8oz. He is still eating good and seems to be awake a little more each day. Please continue to keep him in your prayers. We will update everyone as soon as we get more results.

Prayer Request

Please include Owen in your prayers...we got a call Friday informing us that his infant screening test (that was done before we left the hospital) showed that he may be missing a critical enzyme for breaking down long chain fatty acids. This means that he may not be able to break down stored fat to produce energy. This disorder can be extremely critical and if not treated leads to severe retardation. We went to the doctor Friday afternoon so they could see if he was displaying any major signs that we needed to address right away...he had gained 3 oz since his checkup on Tuesday, and has been alert and eating well. They said that he looked good, but if he became lethargic, and was not eating well we should get him to the hospital right away. We go back Monday at 8:30 for further lab work and in the meantime will be attempting to collect urine all weekend. Please pray that the screening test was only a false positive and after the diagnostic tests are done Owen will once again prove to be the wonderfully healthy baby that we believe he is. All your prayers have gotten us through a lot with this little guy, and we know that once again God will show his grace through this ordeal.

One Week Old!

Owen is one week old today...time is just flying by. It seems like just yesterday we came home from the hospital! In honor of his first week we took some more pictures... imagine that!

Here are two of our favorites from today's photoshoot...

New Sleeping Arrangements

Owen and I got the best sleep ever last night. He's been sleeping in his pack-n-play on his side (because he's spitting up) and waking up every hour to eat. And during the day he's been sleeping for hours in his infant carrier and bouncy seat. So, last night we let him sleep in his bouncy seat in his pack-n-play and it worked. He woke up every 3 hours to eat and went right back to sleep. Who knew three hours of sleep would be so amazing.

Thinking...