Saturday, January 31, 2009

Some Heart News

Maia had her first cardiologist appointment in a month yesterday. Kenny took her, now that Fridays are Daddy and Daughter day. There was a medical student who was shadowing Dr. Rivera, so we got a lot more detailed information this time around.

Blood flow from the heart is now at 37 ml per second. Last time it was anywhere from 20 to 31. So it is improving. Dr. Rivera says that once it gets up to about 60 ml per second she will consider doing the next valvuloplasty procedure (balloon catheter) to massage that stubborn pulmonary valve open some more. We definitely do not mind this! We were prepared to have her chest opened up that first week of life to work on her heart. If all the docs want to do is put a catheter in her femoral artery...we will take it!!!! Oh, by the way a regular child has anywhere from 90 to 120 ml of blood pumping out per second (just so you have a frame of reference). So she is about 1/4 to 1/3 that of a regular heart.

Her pulseox levels at the office was at a 94! This means that our readings at home of 97 are very realistic. 100 is where most people are. When she was discharged from the hospital in November her levels were anywhere from 70 to 80, so we are thrilled with this improvement. This means that for now we should not have to see the blue skin that so many "heart" parents have to witness day in and day out.

We also learned that another reason Maia is doing so well is that even though she has a very narrow hypoplastic right ventricle, it is the nornal length for her developmental stage! Thank you, Lord. This helps her heart to react better, even though it is so narrow. Remember many children born with this very rare HRHS condition have no right heart at all or very small everything on the right side.

Maia is officially 11lbs. 10oz. as of yesterday. She is gaining weight like a trooper. Just right and the doctor is very impressed. It is usually very hard for "heart" babies to gain weight. Eating tires the out from the exertion it puts on the heart, I assume. She is now officially out of all her NewBorn clothing. We regorganized all her drawers to today with 0 to 3 month clothing. It was neat to see the new little outfits she will get to wear from our caring family and friends, but at the same time I felt like she hardly got to wear some of the newborn clothing. Oh well! I am just so glad she is growing and thriving. Again, thank you, Lord!

Maia turned officially 3 months on Thursday. We are so appreciative of this time we have had with her, especially since most of that three months have been at home. We have so many friends that we have made through this ordeal whose sons or daughters have had to fight it out at the hospital and the parents' days are spent in limbo waiting and praying. Again...we very appreciative.

However, before the cardiology appointment yesterday, I think that Kenny and I were almost waiting for the other shoe to drop. We have had so many blows this year to our entire family and Maia has been doing so well that it was almost like it was "too well". I don't know if you know what I mean or not. This cardiology appointment was very reassuring to us. Like my mom told me this morning after I told her these thoughts. "We have had enough shoes falling in this family. It is time for all of us to put our shoes on and keep them on!" Thank you, Mom! I agree!

Like I said, I talked to my mom today. She is doing okay. The chemo symptoms have been very minimal this time around and we thank our friends that have been lifting her up this week. However, she had to have "nulasta" shot on Thursday. This is an antibiotic that has been keeping her whiteblood cell count high. She can fight off disease and illness better with this shot, but everytime she has it her glands in her neck swell and she gets pain from her neck all the way into her arms. Well, it happened again. Yesterday was a blur to her. She tried to catch up on Netflix movies that she had been meaning to watch. She can hardly move her right arm today.
Again, keep her in your prayers. We love you, Mom!!!

She also filled me in on what is happening in the region due to the ice storms. There are 700,000 people in the region that are still without power. Many people have bought generators but have never used them before and didn't read all the precautions. There have many families that have died because they hooked them up in the attached garages and everyone was poisoned by carbon monoxide. How awful and sad! There are whole neighborhoods where no one has gone in or out yet and they don't know if people are alive. They might not have water due to the pipes freezing on top of all of this.

Our family appears to be okay. If they don't have power they are taking shelter with friends or extended family.

Right now schools are going to have to make-up days almost till the end of July. This is pretty extreme since in that region of the U.S. they get out by May 31st at the latest most years. The public school system is petitioning the government to allow them to waive these days so that families can have some summer. We shall see.

We have not heard much from Micah and Gina the past few days. I will have to catch you up on Kaya's status on another post.

Again, we are so grateful to our Lord for how he is using our lives for His Glory. May we be his vessels and instruments in spreading his love and truth. A friend of mine, a heart mom too, posted this at the end of her blog this week and I like it so much that I am stealing from her.

May I be the kind of woman who wakes up in the morning and the devil exclaims. "Oh CRAP! She's up!" Lord make me that kind of woman!


Anonymous said...

hehe, yay! you stole my woman vs. devil line. :) So glad it is applying to so many of us. I'm so happy to hear that Maia is doing good. She sure is growing and it's such great news to hear that her sats are doing so well. Praise Jesus everyday that you have her home with you. And CLAIM it! :) Lots of love and prayers, Ani