MCADD

As you may know we met with the Genetic Specialists last Friday and here is a summary of what they told us.

Peyton has MCADD (fatty acid oxidation disorder- she can't break down fat into energy)

MCADD can cause bouts of illness called metabolic crises. Which if not treated can cause breathing problems, seizures and coma (sometimes leading to death). If she ever gets sick or has an infection she will need to be hospitalized.

Treatment: Avoid going a long time without food (she needs to eat every 2 hours)

When she gets older she will be able to go longer between meals and has to be on a low fat, high carbohydrate diet. Lots of fruit, veggies, only lean meat and low-fat dairy foods. No hamburgers, pizza or anything greasy for our baby girl. She is currently taking L-carnitine which is a natural substance that helps body cells make energy and helps the body get rid of harmful wastes.

Carriers: Ben and I are both carriers which means we each have a single non working gene of MCADD that we each gave her. Our brothers and sisters have a 50% chance of being carriers and also may be at risk of having children with MCADD.

More Pictures

What do you think?

More Bad News

Yesterday we got some bad news from Peyton's pediatrician. She told us that Peyton has MCADD (Medium Chain Acyl-CoA Dehydrogenase Deficiency). It is an inherited fatty acid oxidation disorder which means that Peyton cannot breakdown fats for energy. Once her body uses up its primary source of energy the body begins to fail because it cannot make energy from fats. Therfore she must eat every 2 hours day and night because people with MCAD cannot go long without food. Symptoms include: episodes of hypoglycemia, lack of energy, vomiting or seizures. These symptoms can progress very quickly to coma, cardiac arrest, brain damage, or even death in children who are not eating well. MCADD is inherited in a autosomal recessive manner. Which means she inherited two non-working copies of the gene one from each parent (we are so sorry little girl). They have her on medication right now and we are meeting with Genetic Specialists on Friday the 25th. Please keep her in your prayers.

She's HOME

After 9 days in the NICU our baby girl is finally home. We couldn't be happier. She has been such a blessing in our lives and we are so grateful that she is healthy and home with us.

Sweet Angel

Sweet Baby

Update: They are increasing her feedings and are trying to get her to breastfeed which means they need me at the hospital around the clock. So I'm moving in with her. They are letting us hold her more and more each day. Surprisingly- Ben is an awesome diaper changer.

Cutest Baby

Today was a wonderful day. I got to hold her for the FIRST time!!!!!! She is so precious. I love this little girl!

UPDATE

Peyton is doing very well. :) They took her off the ventilator and is now under a light because she is jaundice ( yellow color of the skin and whites of the eyes caused by excess bilirubin in the blood). They told us she would have to be under the light for about 2 days. We were so excited to hear the good news. More updates to come.

If you want to see more pictures go to:

http://picasaweb.google.com/benmichellefrandsen

SWEET SHADES!!!!!

Our Little One is Here!

Monday started off like any other day. Woke up, packed my lunch and I was off to work. Being only 36 weeks pregnant I had no idea what would lie ahead. At about 3:30pm my water broke. I didn't say anything to anyone and continued to work (dumb huh!). At 4:30pm I was having contractions and finally I decided to tell my boss. A co-worked rushed me to the hospital where Ben met me. 6:00pm the contractions were coming every 2 minutes (so painful) but I was only dilated to a 2 so I could not have an epidural yet. An hour later I was almost a 4 but they had to wait for my lab tests to return before they could give me an epidural. Finally around 8:00pm I got the epidural (all you women who give birth naturally are amazing, I am all about the drugs). 10:30pm I was fully dilated and they went to get the doctor on call. He came in, checked me then asked the nurse to bring him in an ultrasound machine. To his surprise she was BREACH!!! It was to late to try and turn her plus she was doing the middle splits. He told me I would need to have a C-section which I really did not want to do. I was terrified! 11:57pm our Peyton was born. She had Respiratory Distress Syndrome and had to be taken to the NICU. Being 4 weeks early- the doctor told us this was very common. She is such a beautiful baby. She is strong and is continuing to improve. She will probably have to stay in the hospital anywhere from a couple more days to even a week. Thank you for your prayers and phone calls. We really appreciate all your love and support.

Missouri Baby Shower

My GREAT friends (Stephanie who drove here from Oklahoma and Melanie who flew in from Arizona) came all the way to Missouri to throw me a baby shower. It was amazing! I have the best friends in the world. Thanks for coming girls!

Onesies

Two of the residents in Ben's program gave us the cutest onesies and I had to share them with you all.

ABOVE: If you ever ask Ben- "What are you doing?" He replies- Just Hanging out being awesome.

Below: Ben is the only resident that doesn't drink alcohol, so whenever he goes out with them he orders a Root Beer to drink .

BYORB= Bring Your Own Root Beer