Thursday, April 26, 2012

Some of Cayla's recent diagnoses

Well, there's so much to write.  What to say first.  I don't feel like going through delivery day ordeals, so how about an update on Cayla's latest diagnosis.  I think I'm up to talking about all of it...  the good, the bad, and the ugly.  I guess we'll see.

First of all, Cayla was moved out of the PICU today!  :o)  They were going to put her in the step-down unit until her surgery, but decided to put her in the NICU so she could get more help with sucking and eating.  She did have a hard time getting the whole sucking from a bottle down, so they put a feeding tube in her nose this morning. I will not be able to nurse her until after her surgery since the heart doctors are wanting her to eat exact, controlled amounts.  But they will still work diligently with me to pump so my milk will come in and she will still be getting my milk.  But overall, she's doing so, so well physically, you would wonder why she's anywhere near any ICU's (that's what one of the heart docs said). 

Her heart.  It is definitely a hypo plastic left heart syndrome (HPLHS) heart.  Her left side is non functional.  BUT it is true that her aorta, which is a major part of the left heart, is really on the right side and completely functional.  Huge answer to all the prayers!  So amazing and very uncommon, but God chose to do this and has eliminated the necessity of having the 1st and worst of the 3 needed surgeries!  Praise the Lord!  Now, what they did say that we hadn't heard before was that the aorta and coronary artery start off at conception as one.  After 4 weeks in the womb, they separate.  Cayla's did not separate.  They are still fused together as one.  They will need to be separated.  This will happen during surgery #2.  Her aorta also has 4 valves at the base instead of 3 which is common apparently with HPLHS.  Her pulmonary artery is also connected to the large combined pair which will make splitting them more difficult.  The valve between her 2 right chambers does leak and will also need to be fixed at some point.  Something was also mentioned that (don't ask me to remember the name) somewhere in her heart she has the wrong number of arteries.  I don't think Lowell was told what all that means, but just that there are many little and big things that will need to be corrected on her heart. 

Her club foot and other abnormalities.  When we arrived at the NICU, the nurse practitioner was giving Cayla an overall exam.  She got to her club foot and said, "I don't think this is really a club foot.  If it is, it's very mild."  She said she could turn her foot and with very little pressure get it in it's normal lined up position.  She felt it's more of just a positional deformity and not due to a muscular or bone abnormality which is much easier to correct.  We'll see, she might just need a brace to fix it.  Some other problems they have found, possibly due to the same unknown reason for the club foot, are that she has a slightly curved spine and will probably have to deal with scoliosis at some point in her young life.  She also has some ribs that are fused together and some short ribs, but they don't think this will be an issue for her, could be, but don't know or just didn't say.  At one point I heard the nurses giving a run down on her and heard them say something about her neck bones I think.  I will ask about that tomorrow.   I think there were some other things, but right now at 10:40pm I can't think of what else was said.  The things she has to deal with are not necessarily life-threatening outside of the future unknowns of her heart.  That makes all this not seem quite so bad.  I know there's other stuff, but I just can't think at the moment.  :o}

I think this is all I can write for now.  I've just had my vitals taken for the night and was told that no one will need to come in during the night.  I might actually get a good 6-7 hours of sleep tonight!  :o)

I do want to close with a grateful, thankful, blessed heart.  I just want everyone who has prayed for us to know that those prayers have just allowed us to be carried through so much!  So many prayers have already been hugely answered and she's only 2 days old!!  I'm going to start crying again...(I heard Lowell's voice on the phone tonight and started crying earlier...).  I know a simple written Thank You isn't sufficient, but God knows all our hearts and from the bottom of my heart I give you all a Thank You for so many prayers.  Even those that I've never met!  You've all blessed our family tremendously!  God is in control and we are resting in that! 


  1. I'm so thankful for this blog!! Thanks, Linda, for your faithfulness in keeping us posted.
    Prayers, love, and hugs,

  2. Your heartfelt "thank you" in this post was received with a heartfelt "you are welcome." You have shared this journey with us and we have been blessed to pray for Cayla Joy, for you, and for your guys. I'm praying you get a real good night's rest and that you will regain your strength day by day. God is so gracious and so good. We rejoice to know He has sustained Cayla and has a wonderful plan for her life. Hugs!!!

  3. My choir is praying for your sweet Cayla Joy. Chin up Linda Joy; God is in control. My Jay was born 9 years ago and spent 4 months in the NICU, and now he's such a boy that no one believes how much he needed in the beginning. Please write me if you want some words from someone who's been there!
    Praising Him all the time!!!
    love from,
    Cassie in Georgia