Monday, July 16, 2012

Cardiology for Beginners

At our last cardiology follow up, Dr. Pinto had advised us that she had some small concerns about part of Clara's heart repair. To repair Truncus Arteriosus, the surgeon takes the common trunk that should have been an aorta (send the oxygenated blood to the body) and pulmonary artery (send the blood to the lungs to get oxygen) and turns it in to the aorta. He (or she) then takes the periphery pulmonary arteries and places a conduit between them and the heart, thus building a new main pulmonary artery. Ta da!
The new artery (conduit)
is where the narrowing is
However, where the conduit creates a T with the periphery artery, there was some (expected) narrowing showing in her echo taken shortly after surgery. Today, they did another echo on her and found that the narrowing is getting worse and it is impacting the effort made by her right ventricle. Long story short, we'll be making a visit to the PCMC cath lab soon. The news is that it is an easy, generally same day procedure. The surgeon will go in through a vein in her thigh and use a balloon to stretch the area that is narrowing. If needed, they may have to place a stent to keep it open. If all goes well, we're home for dinner.
The good news from the appointment-Clara is getting a g tube! After we re-fix her heart, Dr. Pinto has referred us to GI to get the ball rolling. So while that is probably a few months away, I can see a light at the end of the tegaderm tunnel. 2 tape changes per week x maybe 10 weeks means less than 2 dozen NG tube nervous breakdowns for Mom. I know there will be new and different challenges with this new tube, but we have heard so many good things in comparison to the NG. We also got cleared to take Clara up in the mountains this weekend for a family reunion, no oxygen required! We'll take progress where ever we can!
Showing off her muffin top
after her echo

Sunday, July 15, 2012

Nothing Much to Report

It has been 6 months since we found out about Clara's heart defect as of Friday. That was another Friday the 13th entirely. It felt like our whole world turned sideways, but we've mostly gotten our sea legs since then. I  do find it suspicious that my mom and sisters are always at market on Friday the 13th, however. I am beginning to think it is to test me and my coping skills.

Clara has had a tough week. She pulled out her tube a few times, her impetigo is back for about the 6th time, and she seems to be just plain cranky. We hate summer in this family, excessive heat makes us grumpy. It seems that the heat combined with the tape we use to keep her tube in adds up to her skin getting irritated and infected. This leads to use changing the tape every few days to let her skin breathe and recover (PS, it is Not. Working.) and the tape change leads to Clara and I crying and crying. She knows when it's coming, I think she sees the supplies sitting on the bed after bath time and she starts to get upset. And her cry has become more and more sad-instead of just a little kitty baby cry, she has started to sound so much more real when crying, like she knows what is going on. And it breaks my heart every time, because it's me causing this cry. It's the worst feeling in the world.

We did get to visit Uncle Nate and Aunt CC for dinner last night, and Clara was happy for several minutes in a row. I think it's because of the nice cool air that Nate, as a hardcore Wallace, so appreciates. If something happens to Todd and I, Clara needs to live with someone who really appreciates her need for industrial sized air conditioning units in private, single family homes. That's on you Nate, Sherrie and Papa.   

Clara is also getting very determined to turn over, she's even attempting it while in Genevieve and then yelling and yelling at us when it doesn't work. When she's on the floor, she is so happy because she can turn to her side and she does it over and over, then falls asleep. She's learning so much, so fast, and we love watching her change and grow.

We're meeting with Cardiology tomorrow and hope for some help with getting us in to GI quickly. We need them to move her to a g tube in her belly, I can't keep torturing my baby girl with skin infections and tegaderm tape.

Tuesday, July 3, 2012

Making Our Own Socks

There is a commercial for socks that always cracks me up. You see a dad and his son applying a white cement-like paste to their feet, and when mom returns home and asks what they are doing, they explain that they can't find socks that stay on without losing their shape ("and we're sick of it" says dad. "Sick of it" enforces son), so they are making something that will stay on permanently. The mom tells them that is stupid, and produces a  solution-socks that maintain their shape! And the family is joyous and they all jump on the bed together in their crisp, white, appropriately curved socks. Hoorah!
This is similar to what I foresee for the next few years. I go back to work in 2 days, and my control issues are creeping up on me. I am nervous to not be here to make sure things go smoothly, and I'm facing the fact that they won't go smoothly, and that it's ok.
High maintenance newborns create a lot of work and stress, diligent time keeping skills, and much patience. It's hard enough with both Todd and I around, and I know it will be harder when he's on his own. Clara is a full time job of feeding and cleaning and changing and laundry and restarting the mobile, replacing the binkie, re-applying raspberries to her tummy.
But I'm learning that people who are not me can also take care of Clara just as well, even if it's different than how I would do it. When the socks won't stay on, I know Todd will find an alternative process for keeping feet warm. I predict big messes and crazy ideas and that at least once a pet will be purchased without mom's input. Like so many working moms, I am sad that I have to leave and miss all the fun and chaos and milestones. I'm worried that I won't be here to figure out how to handle things going awry, but I know Todd will use his creativity and endless love of Clara to fix any problems that come up. And I can't wait to come home from work and tell them it's stupid and give them my solution ;)  Then we can all jump on the bed and laugh together in ecstasy!