Elijah's Heart Journey: June 2012

Sunday, June 17, 2012

Ugh

Earlier this week Noah came down with yet another cold. As soon as his nose started running, we knew we were in trouble. When Dion got home from work each one of us took a kid and went to a different room. The next two days his niece was able to come over and help me during the day so that we could keep them apart until both Dion and his niece got sick as well. Noah has an awful cough and has been super grumpy. He only wants mommy. The adults seem to have colds. Once his niece got sick, Dions sister and my mom came over to help.

I am terrified Elijah will get sick again. I feel like we got lucky the first time and that luck may run out. I feel the panic start to rise just thinking about it.We have been wearing masks and using hand sanitizer like you wouldn't believe. I went through the whole house and disinfected every surface I could, I sprayed lysol everywhere, and I washed anything that fit in the washing machine. I opened all the windows and aired the house out. Hopefully this will help us avoid the illness, but I know that ultimately it is out of my control. I feel like the walls are closing in over here.

On another topic, Elijah's oxygen levels have been lowering slowly over the last couple of weeks. They have scheduled him for his cath on July 5th at CHLA. Hopefully everything goes well and we will be out of there the same day. He is continuing to gain weight, but very slowly. He is almost 10lbs. They want us to start fortifying his bottles again, but Elijah is so picky that he won't eat much when they are fortified. Who knew a three month old would be so picky!

Monday, June 4, 2012

Discharged

Elijah came home on Friday afternoon. I have been slow on updating because I caught his cold and have been under the weather. It just goes to show you how fragile he really is. Noah and I both got sick and both of us recovered just fine. Elijah catches it, and he is hospitalized for 5 days. Crazy. We are going to pull Noah out of preschool after this week in hopes that it will prevent more illness from coming in the house. I feel awful about pulling Noah out because he loves it so much, but I just have to remind myself that it is temporary and that kids typically have summers off. I am hoping Elijah will be able to have his next surgery before school starts for all of us in the fall. I am afraid of the germs that all of us will bring home once we return to school. I know that I typically get sick when the school year begins and Dion does as well.

On another note, this stay at UCLA has confirmed our decision to go with CHLA. If you read the posts from my pregnancy, you will remember that I was incredibly torn between the two hospitals. When Elijah got sick this time, we were forced to go to UCLA. Once we got there, because his heart function was good, we did not force the issue and get transferred to CHLA. However, there are drastic differences between the two hospitals and if this were to happen again, we will do everything in our power to get to CHLA. I am very grateful to the ladies from Sisters by Heart for guiding me in the direction of CHLA. I'm not sure that Elijah's outcome from the first surgery would have been so good had we gone with UCLA.

A fellow heart friend of mine had the poem on the side on her blog and I liked it so much, I added it to mine. I hope she doesn't mind!

The Chosen Mothers by Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit. Did you ever wonder how mothers of children with life threatening illnesses are chosen?

Somehow, I visualize God hovering over Earth selecting His instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger. "Armstrong, Beth, son, patron saint Matthew. Forrest, Marjorie, daughter, patron saint Cecilia. Rutledge, Carrie, twins, patron saint Gerard."

Finally, He passes a name to an angel and says, "Give her a child with cancer." The angel is curious. "Why this one God? She's so happy." "Exactly" smiles God, "Could I give a child with cancer a mother who does not know laughter? That would be cruel."

"But, does she have patience?" asks the angel. "I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she will handle it." "I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has it's own world. She has to make it live in her world and that's not going to be easy."

"But, Lord, I don't think she believes in you." No matter, I can fix that. This one is perfect. She has just enough selfishness." The angel gasps -"Selfishness? is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take anything her child does for granted. She will never consider a single step ordinary. I will permit her to see clearly the things I see...ignorance, cruelty, prejudice...and allow her to rise above them." She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side." "And what about her patron Saint?" asks the angel. His pen poised in mid-air. God smiles, "A mirror will suffice."