October 19, 2009

Belated Cardiology Update

Here is a belated post about Alexa's cardiology appointment on Monday, October 5th.

Every appointment starts off with filling out new paperwork on changes, updates, etc. They take her blood pressure, then she gets an EKG. At this visit they were unable to do the EKG because the stickers kept falling off, the reason, she had a bath and baby lotion all over her body before the appointment (usually I bathe her at night so we hadn't had this problem before). After many tries, rubbing her down with moist towels etc. the nurse checked with her doc to see if it was okay that we skipped this portion of her exam. He said it was okay so we moved on. Next she checked Alexa's O2 levels. The first readings were 71, 72, I was very sad but after the previous cardiology appointment I was prepared for bad news with her sats. The nurse said she would retry but wanted to get her weight first. She weighed 21.4 pounds and is 30 inches long. She then went back to checking the sats, this time however, she taped the pulse oximeter to her wrist, it quickly read 79 and pretty much stayed there. I was SO relieved! Alexa, has also become very vocal about things she does not like them doing anymore, definitely a difference from past appointments, no more prodding and poking or strange faces trying to examine her please!

Then we waited for her awesome doctor, Dr. P, he specializes in both the plumbing (structural) and electrical side of the heart. He is young but very sharp and intelligent. We met Dr. P while Alexa was in the NICU, we really liked the way he explained things, he took his time, drew pictures, sat down, was not rushing and didn't get up until we said we were done asking questions and understood.

I had many questions for the doc at this visit. I wanted to know more about the echo they had done. He said her shunt was still wide open and the pressures gradients were normal, equal on each side both through her shunt and her pulmonary artery. He explained it to me that since they are both arising out of the right ventricle, it's kind of like the Niagra Waterfalls, on both side the Canadian and the U.S. side they are both arising from the same source so the pressure with which they fall is the same.

There are also some mommies I have met online with babies that have had Rastelli's and they are now having enlarged conduits. Since Alexa is scheduled to receive this surgery I wanted to know what would cause an enlarged conduit. For the benefit of me, so I don't forget and for those mommies that may read this, I will try and explain what he said as it made perfect sense. He first told me to think of a frozen piece of meat you take out of the freezer, basically what the conduit it is, he told me to think about how it thaws and softens out. Now they use/place this little piece of defrosted meat/conduit as the pulmonary artery. He says, this little piece of meat is basically dead because it doesn't grow as all the other tissue will. So now he told me to think of it as a sock. A new sock has some elasticity and as you wash and wear it returns to pretty much it's original size, but over time the sock loses it's elasticity and you have a wide shapeless sock. That is what he described happens to the conduit. Because it is non living tissue, it does not have elasticity. And so, as the blood pulses through the conduit, it receives tiny tiny tears into it but it cannot reshape itself so it becomes enlarged over time. He told me however, that with Alexa being older, hopefully around a 18 months for her surgery, she should be able to receive a larger conduit. He said the larger the conduit you are able to place from the beginning, the lesser the chances of the conduit enlarging becomes an issue. This has to do with the diameter of the conduit. He said the smaller the diameter, the bigger the difference or the more it affects the blood flow, if it becomes enlarged or how he mentioned more commonly stenosed (narrow). So he said he feels this will be more of a non issue for Alexa, but would instead be more worried about the conduit becoming stenosed. So this will be something they will be watching for after surgery.
I wanted to share this on here because he has this great ability to explain things using simple illustrations. And so I can totally visualize and comprehend what he says. He always explains things this way and I so I can't help but think that not only is a great physician but a great teacher. As I walked out to my car after this visit, I couldn't help but be reminded of the Greatest Man that ever lived, Jesus Christ. Jesus left people dumbfounded by the way he taught. During his Sermon on the Mount he used simple everyday things to teach people about the Kingdom of God. And of course, I am in no way saying that Dr. Papez is Jesus, (as I am sure he does not declare to be so) he just happened to make my heart and mind feel full with discernment, knowledge and understanding and made me think back about how awesome it might have been to be in Jesus' presence and personally be taught by him. (Of course, however, we have the Bible which contains his teaching for the benefit of many to this day.)

So anyway, we are to go back on November 20th, he wants to keep checking her oxygen sat levels. This will determine when we move on with surgery. I really wanted to take pictures of Alexa with him as he is an important person in her life both he and her surgeon. I regret not taking these earlier since Alexa has now become apprehensive about who she let's carry her. He said that she will not begin to love him again, until she is about two and half years, I agree but I still got some shots. Thank you Dr. P for taking great care of my babies heart!

Oh, and I forgot to mention that he also took Alexa off her Lasix medication. I just happened to comment that Alexa had been constipated off and on lately and he immediately made the connection between the Lasix and the constipation. He explained that now that Alexa is eating more solids and drinking less milk her intestines need more liquids to help absorb and digest the nutrients and so the Lasix being a diuretic was aggravating this problem. The amount of Lasix Alexa was on was so minuscule (mostly used as an extra safeguard) he figured that it was not really benefiting her cardiovasculary and instead was negatively impacting her digestion. So he waved his wand and did away with it and now Alexa and I are happier for it.


  1. What a great way to explain it. Thanks for sharing it. Logan's became enlarged from his stenosis. He was ten months old when he had his Rastelli and we began having issues six months later. We currently are in limbo waiting for him to get big enough and hoping that his enlarged conduit and other issues can make it that long.

    Glad her check up went well! Cute pics!

    Stefenie, Ryan, Wyatt and Logan Jacks

  2. Shes growing up to fast. Shes a trooper shes come along way and we know shes going to do just fine because shes a strong happy little one.

  3. I just found your blog via BabyCenter. Here I am at my computer, tears rolling down my face, reading about your prenatal diagnosis and experience with CHD. I am crying because your words are my words and your pain you describe is the pain I have felt with my own son's CHD (complex single ventricle). We've been thru one surgery and are waiting on the second very soon. Thank you for your beautiful words!


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