Monday, August 31, 2009

Part 2

The Dr had explained to hubby that the test was very sensitive and since Dudes levels were low he felt it was a 95% chance that he did not have MCAD. Dude would have to have more bloodwork done immediately. At this point, hubby explained to me that Dude was fine and that the Dr didn't feel he had it. Worst case he would need to be on L-Caratine medicine. Ok, I can live with that.

On Dude's one week birthday we took him in for his bloodwork. I knew I wouldn't be able to be in the room when the blood was taken, I can barely handle watching myself get poked with the needle! I sat in the waiting room hearing my baby cry, feeling little comfort knowing hubby was with him. Dude needed his mommy!

That night hubby and I were talking about MCAD and I asked a question that he didn't know the answer to. He told me he would call the Dr in the morning. I thought to myself..."no worries, I have the internet!". Hubby went into Diva's room to play with her while I fed Dude. I decided to use my mommy powers of multi-tasking and got out the laptop. I googled MCAD. Massaccusets Commission Against Discrimination...no. Montgomery Central Appraisal District..no. Microsoft Certified Applications Developer...nope. MCAD-Medium Chain acyl CoA Dehydrogenase...that's got to be it. I clicked on the website and the first paragraph explained what MCAD was. MCAD is an enzyme that breaks down fat. For those that have the disorder, they are either missing the enzyme or it's not working properly. Then I looked at the third paragraph. It may be the cause of 1 out of 100 infant deaths thought to be SIDS. It's a silent killer, you don't know that a child has the disorder until they get sick, fasting, or dehydrated and falls into a coma at which time it's usually too late. I couldn't read anymore. I was in shock. The perfect child I was holding had a killer inside him that could strike at any time. Hubby walked in and I had tears running down my face and couldn't speak. He saw I was barely holding onto Dude. I couldn't look at him. I finally was able to get out that I had googled MCAD. His response "why did you go and do that!". That night I felt like a horrible mom, I could barely look at or hold Dude without crying and thinking he was going to die. I felt horrible. No more Google for me!

When I was able to listen to hubby he finally explained everything the Dr had said. MCAD is not a death sentence. Since the newborn screening has included MCAD, there have been no known deaths after getting the results and following the treatment plan. Until we got the results back, we would need to make sure that Dude was feeding well and not getting overheated. If he isn't eating well, get's sick, or dehydrated then we would have to take him to the ER for IV fluids. The Dr didn't go into much more detail with hubby since he was 95% sure he wouldn't have to talk to us again after the results came back.

Every day I continued to cry, but with each day did get better and stronger. Then on Dude's three week birthday the phone rang. It was the Dr. So much for being 95% sure.

Sunday, August 30, 2009

Part 1~ Huh?!?!

I brought up in my last post that Dude had a Dr's appointment in my last post and had contemplated on waiting to write this until we had the results, but the results will not be available for another 4-6 weeks and I feel that I need to write about what we are going through with dude. I'm going to break this post into four posts, ending with hopefully good news about the test results.

When Diva was born in 2005, California's newborn screening tested for only 4 disorders. By the end of 2005, the number jumped to 100 disorders that California continues to test for.

We had only been home a day when the call came in "Hello is this Children's Services with a referral from your child's pediatrician". Ummmm...He's only been home a day and his Dr is already calling CPS on me! I figured I had at least another week before someone figured out I was not ready for two children!!! The woman would not explain what she was calling for. She explained the only information she had was my name, my son's birth date, and a code...MCAD. I asked what that code was for and she said she did not know. Come to find out she wasn't from CPS, Children's services is the governing body for the newborn screenings in California and helps families with paying for the additional testing. She couldn't even explain that to me, so she is being given the Asshat award!

We had seen Dudes pediatrician earlier in the day and was told he was perfect (of course!). Hubby was upset with the call from Children's services, so he called the Dr. The Dr. had no idea what was going on either, but an hour later she also had a referral from the lab and from the geneticist. Dude's newborn screening had come back elevated from MCAD. The geneticist called soon after and spoke with hubby. He explained that MCAD is a genetic disorder in which a persons body cannot break down fats into energy. Dude would need further tests to determine if he does in fact have the disorder or is a carrier. The geneticist went into great detail with hubby about the disorder and what would be our next step. Hubby explained to me what was going on, leaving a few things out that he thought a new mommy recovering from a c-section didn't need to know right then. Unfortunately, he had forgotten about my mad googling abilites...

~ Part two tomorrow.

Tuesday, August 25, 2009

Things to do...

-make hair appointment. This is considered an emergency at this point!!!
-take my mom to her Dr appointment on Thursday. I'll post about what's going on with her after I meet with her Dr.
-take dude to his Dr appointment on Friday. We are going through a little stress with Dude right now and will give the situation it's own post soon.
-the social butterfly...aka Diva...has two parties this weekend. I just noticed the times for one of the parties...IT'S 4 HOURS LONG!!! IT'S A 4 YEAR OLDS BIRTHDAY NOT A WEDDING RECEPTION.
-buy gifts for the birthday girls.
-write out thank you cards.
-finish dudes birth announcement.
-update blog and leave comments. I swear, it was easier to blog when I was working.

Tuesday, August 11, 2009

Dude and his BFF...



It has been decided...his name will be dude!

Friday, August 7, 2009

I blew it up...

my laptop that is. Of course it has only been out of warranty for a month and HP wants $$$ to even talk to us. I feel so used! I'm having to use my grandfathers old laptop and it doesn't have a card reader so unfortunately...no new photos of RJ and Diva. Hopefully this weekend hubby will trust me to use his computer and I can post some photos.

Also, I'm trying to decide what to call RJ on the blog. I had been calling him Cobra during my pregnancy (you know me and my mustangs!), but since he has been home everyone has been calling him dude. Even my dad who doesn't call anyone dude has taken up calling him dude!

Thursday, July 30, 2009

Introducing...


Robert James! He arrived as scheduled on July 17th at 7:55am, weighing in at 7lbs 7oz and 18 inches long.
We arrived at the hospital at 5:30 am for a 7:30 surgery. I had both hubby and my mom with me for support and my dad stayed with Diva at home. I had heard stories all along from friends that you never get into the OR on time and expect to be sitting around for a few hours, but thankfully we got in the OR on time. I was very calm through everything until the spinal tap...OUCH! I can still vividly hear his first cry, although when they asked if I wanted to see him I said "I'll see him in a little bit"...the spinal tap was making me extremely nauseous and I didn't want his first view of me possibly being me throwing up. When I finally did see him, he was perfect and looked just like his sister.
I got to carry him while they wheeled me into the Recovery room. I had a fantastic nurse who was on top of giving me my pain meds (mmmm...morphine...) and noticed that I was hemorrhaging. The other nurse said it was just a little extra bleeding, but come to find out it was more. Thankfully the nurse and my Dr were able to stop it while in the recovery room and I didn't have to go back into the OR or have a transfusion, although I didn't get to see RJ for 5 hours.
It's been two weeks and I'm moving around so much better than with my first c-section and I'm already 5 lbs lighter than when I got pregnant! RJ is a champion eater and is already a mama's boy!

Saturday, July 4, 2009

Happy 4th!


I hope everyone has a fun and safe Independence day, or as Diva calls it...fireworks day! I have been given a direct order from hubby that I am not allowed to go into labor on his favorite holiday or at least not until he has set off all his fireworks tonight. I may just have to throw a few fake labor pains his way today...hehehe!