Lots to update

I will warn you that I'm all over the place in this post. Just trying to get everything in. :)

I know it's been awhile since I updated. We are doing our normal weekly routine. Monday and Tuesdays we watch baby Brendon, Wednesday is speech therapy and every other week is my OB appointments, Thursdays and Fridays are filled with shopping, doctor appointments, and any errands we need to do. It is really nice to be able to do all of this stuff and not be on bed rest. (Sorry Megan I know it's been rough for you). I was on bed rest by 21 weeks with Arianna so I was really concerned about how I would do this time around. I'm still taking the progesterone shots, which are making me one crazy, hormonal woman. I just keep telling myself it's temporary and all worth it to keep this little guy inside and growing. Oh yeah...we're having a BOY! We had the baby's echo a few weeks ago and the cardiologist said his heart looked great! We have another echo at 32 weeks to confirm nothing has changed. Here are his latest pics..

This weekend we had our Mended Little Hearts meeting. We had a pizza party to celebrate CHD Awareness Week and Beads of Courage came and did strength beads with us. Here are some pictures from that day.

Getting ready to load up the car.

Arianna & Brendon

(This is the little guy we watch. He is adorable!)

Bepa helping Arianna make her strength bracelet

Speaking of the heart...yesterday was Arianna's cardiology check-up. It had been a year since her last echo so I already prepared her for that. Unfortunatly, they got a new machine that does an EKG at the same time so she was upset about the stickies they put on her. I think it also made a difference since the normal echo tech was not there.

If we talk on Facebook you already read about the results but I'm going to post it again anyways

The right ventricle pressures are rising, as we knew they would. Of course they will never give us a timeline for when the next surgery will be but I was warned it might be sooner than we anticipated. Her RV pressure was 21 back in Aug. 08' and today it was 24. If I remember correctly we don't want that number higher than 27. So if she continues with this pattern that would put as at needing surgery in about a year and a half. If the pressures get worse before then we will do a cardiac MRI and depending on what that information gives us will determine when surgery is needed. We go back in 6 months for a check up. Not sure if they will do another echo at that time. In the meantime we are just going to enjoy every day with her. Physically you would have no idea her heart is getting worse.

So last night Arianna's cough got a little worse. I checked her sats and she was borderline needing oxygen so we pulled out the nebulizer. Sometimes I think it works better than the inhaler.

I made her sleep in our room last night so I could keep an eye on her. Her sats stayed just high enough to not need oxygen. :) She is doing so much better today and not even needing her nebulizer!

Well I think that about covers everything. I'll try to update more freqently so I don't have to cram everything into one post. I appreciate everyone that checks in on us! :)

Mother knows best

That's all I can say. Sometimes I wish people would just listen to me.

I put a call into the pulmonary clinic and spoke with the triage nurse today (well guess it's technically yesterday). I asked about getting a nebulizer and I heard, yet again, how inhalers work just fine if used correctly. They asked if Arianna does 6 deep breaths in with the inhaler. Okay, come on, she is only 2 1/2 years old. I just got the kid to quit screaming when she sees me pull it out. After talking about why I think we should try the nebulizer, they called it into our home health people and 2 hours later it was delivered. I have to give them credit because the doctor said it would take a few days. The delivery man said when it comes to nebulizers they know its because people are having respiratory issues and no one should wait to get that kind of relief. How sweet!

Once Robert picked up her medication from the pharmacy and got home Arianna already cried herself to sleep because I had to pull the oxygen back out. I gave her the 1st nebulizer treatment and she started that wonderful coughing, which is a good thing to get all that nasty junk out her lungs. Her sats jumped up and the oxygen was put away. I know Arianna is happy about that. I just checked her sats right now and my princess is satting at 93 and sleeping like an angel.

I am just so relieved we have finally found something that works for her. I feel a huge weight taken off my shoulders.

The pulmonary nurse wants us to schedule the first available appointment for Arianna to see the doctor. She just didn't feel comfortable having her wait till August for a follow up. I'm sure they are scheduled weeks out so we'll see what we can get.