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...