Easter Sunday

We are still here in the hospital, and although it was Easter, it really doesn't feel like it is when your family is split in different directions. We have been blessed with so many prayers, by those we know ans those we don't know. Ruby has progressed so much in the last two weeks! She is off her oxygen now, and IR put in her GJ tube, which I honestly haven't fallen in love with. It's bulkier, she's got major gas and she hasn't stopped spitting up (which is the entire reason we did it) and it's leaking like crazy. She's happy regardless, but tomorrow we have to send her to IR again to have it replaced because it looks like there is a small leak in the balloon somewhere. And we have to talk to GI to figure out the spit up. So until those are figured out we probably won't leave the ICU.

We spent her 1st birthday at her bedside! She couldn't leave, so we brought the party to her! We ordered cupcakes for the nurses and brought in balloons and presents! She wasn't super happy that day, unfortunately, so smiles were scarce, but she's so content, and such a love.

                     

There is still some concern about her heart. The dr.'s called in a specialist from cardiology on pulmonary hypertension. I made the mistake of googling that. It's a bit scary. Dr. Rao (our pulmonologists husband) is so nice and came to chat with us for a while about it. He said IF she has it, it's type 3, which is temporary, which means it's going on while she is sick. He said the ASD she has is working to her benefit because it's pushing more blood through. Pulmonary hypertension prevents the right side of the heart from working well. It narrows the arteries in the lungs causing high blood pressure and less blood flow. It's not great. He said he wants to do another echocardiogram while we are here and then he wants us to get one in Prescott when she is well and because of the elevation change. He then will see exactly what's going on and determine if we need to be part of his pulmonary hypertension clinic. As much as I liked him, we are hoping for a big fat NO on that. 

He said either way, we are for sure to use only cardiac anesthesiologists to prevent any issues. It also looks like our cleft repair won't be happening for another 8-12 weeks because of her o2 issues. Which I am fine with. I don't want to take any chances either. 

It's so hard when things start to get better, having more problems in areas you didn't think were a problem, or they haven't been in the past even though the possibility could be there. I really just want her little body healed and for all of the parts to work together for good vs. bad. I look at my other kids and think of really how amazing our bodies are, for everything to work together so easily and to have never had to deal with any major health issues. 

I was reading a book by Maya Angelou, a friend brought me and this little poem hit a tender spot in my heart for my sweet Ruby:

The free bird leaps
on the back of the wind
and floats downstream
till the current ends
and dips his wings
in the orange sun rays
and dares to claim the sky.

I just want my baby to be the free bird we all are. I want her to run and play and jump and see everything she can see and do everything she can dream of doing. I want her to go to the movies with friends and eat popcorn out of her mouth and hike a mountain with a healthy pair of lungs.  Things that intake advantage of.  I want her to love life and understand heartbreak and joy. 

I know regardless, she'll love life. She already does. She'll teach the world of happiness and joy whatever her circumstances and she'll be loved by everyone she comes in contact with. 

Who can't love this beautiful, happy face?!?