Thursday, January 31

Heart to Heart

My heart is learning to love and feel different emotions than it ever has before.  I now have what you would call a mothers heart and like others have described, I have another heart beating outside of my chest and that is within Penelope.  I feel everything that she feels and want so much to make sure that she is protected from pain.

I am learning all to quickly that everything is not in my control.  A couple days ago we had a follow up appointment at Valley Children's Hospital, for Penelope's heart murmur.  Our pediatrician said they would be the ones to monitor her heart and make sure that the tiny hole in the muscle does indeed close.  Tyson and I went in with high hopes that this would be a quick appointment.  We figured we would just go through the motions to please our pediatrician, seeing as we had already gotten the okay while we were at Primary's, while in Utah that everything should be fine.  

The cardiologist ordered another EKG and echocardiogram for that day.  He wanted to see for himself that everything checked out.  Tyson and I didn't really think anything of it and watched as our baby had another echo done on her heart.  She again was a dream boat.  She slept through most of the procedure.  The tech said she was going to have the doctor take a look at the results and that he would be back in to talk with us.  

The cardiologist came in telling us that she did have the Ventricular septal defect that the other doctors had seen, but that didn't pose as a problem.  He said it was so tiny and that even if it never closed it was so low that they wouldn't be able to perform surgery on it anyways.  He then proceeded to tell us some news we were NOT expecting.  He told us that Penelope has what is called left pulmonary artery sling and not only that but she has the valve that babies have while they are in the womb that stops the blood from going into the lungs still.  Tyson and I had never heard of either of these things. 

I looked up the description online for LPA sling.  Pubmed described it as "a very rare anomaly in which the LPA arises distally, far from the right pulmonary artery on the right side of the distal trachea, turns sharply leftwards around the trachea and courses to the left lung hilum through the space between the trachea and esophagus. LPA sling is often associated with distal tracheal narrowing, due to either intrinsic stenosis or secondary compression by the anomaly itself."  Basicly with the extra valve being there from when she was a fetus and the LPA sling, there could be a compression of her trachea and esophagus when eating solid foods.  In order to determine if there is a compression they have to do a CT scan and have her drink a dye. 
(I hope I described it correctly, I am still learning and these medical terms are a little complex for me.)

When Tyson and I heard all of this information we were kind of in shock.  The doctor said after the tests are done he would sit down with the surgeons and other cardiologists at the hospital to decide if surgery is going to be necessary. 

When I heard the word surgery my heart about fell on the floor.  I of course thought of the poor scar she may have and all the other things that could go wrong during open heart surgery.  Tyson and I left the hospital that day with different news than we had anticipated.

I received the call to schedule her CT scan and dye testing today.  It is the first time I have broken down.  Thinking of my baby having to go under general anesthesia about does me in.  Not only will she have to be put under but she will have to fast before she goes in.  I don't know how I am going to handle having her go hungry and have no way of soothing her.  Her test isn't until 3:00 in the afternoon. 

I know that everything happens for a reason and that if she hadn't contracted RSV the doctors wouldn't have found her murmur which then led to them finding this.  I know that it is better to have this all taken care of now, but it doesn't make it easy.  I take comfort in knowing that she will be in good hands that we have the gospel, the Priesthood and that prayers are answered. 

I am so in love with my little girl and just want everything to be okay with her.  She has already been through so much and it is killing me.  If I could take it all from her I would.  

She is so happy all the time and just melts my heart.  This picture describes her perfectly.

The test are not scheduled till the end of February.  In the mean time I must have faith and pray that all may be well.  I am grateful I have Tyson by my side and for his unconditional love and support through the good times and the bad.  


  1. You have such a beautiful family. I will be praying for your sweet baby. So sorry you are going through all of this.

  2. Oh that breaks my heart for sweet Penelope. Luckily this can be further looked into and hopefully resolved as easy as possible for her. It's never fun to see a child be put under I have a hard time every time I had to put each one under for their surgeries! So grateful for the gospel and the priesthood that beings comfort in these times! Keeping your sweet little family in our thoughts and prayers!

  3. JANESSA! I am SO SO SORRY! I honestly can't imagine... I know she will be just fine though, but doesn't make it any easier! Our prayers will be with you! :)

  4. It breaks my heart to read this but I'm glad you have an amazing support network to carry you through this trial. I know what those really low breaking points feel like, but there is definitely still a lot of hope. Surgery is not a definite yet, and even if it becomes necessary, much of the time they can do heart surgery through an incision behind the ribs, so there's a scar on the back and not one on the chest. You are also in the hands of some AMAZING cardio people and surgeons at Children's. Dr. McDonald is an incredible guy and world-class surgeon. She couldn't be in safer hands. I know you'll be holding your breath for awhile, but I'd be happy to answer questions, help or just listen if you ever need a "semi-experienced" ear. Hang in there...and keep counting your blessings just like you are doing. It really does help.

  5. I am so sorry to hear this. You are right though, everything happens for a reason and it's a blessing to have found this now rather than when she starts on solids. That could have been a lot scarier. Praying for you and your beautiful little fam!

  6. I am so sad to hear this :( She truly is the sweetest little thing (though I can only tell from pictures ;)). I hope you will have peace during these difficult days. We will add our prayers to everyone else's. xo

  7. I hope everything goes ok for you guys. I remember when Will had surgery at 2 months and I really worried about not being able to feed him. He survived it! And it was hard, but it didn't even last for a half a day. Sending your sweet family lots of love & prayers!

  8. WOW, what a little miracle baby!!! You are such a strong person, she is lucky to have a momma like you!!! PLease keep us all updated, we will be praying for your sweet baby!!!