Thursday, April 25

Surgery 101

Finally, Tyson and I were able to meet with the heart surgeon, that will be performing Penelope's surgery.  We have had so many questions and have received no answers, up until this point.  The day finally came to know the details of the operation.

As soon as they called Penelope's name my heart started to race.  That dreaded day when Tyson and I would hear the words that our daughter would be having open heart surgery came.  Her doctor will be Dr. McDonald.  Don't worry, Tyson and I did our research and were happy to know he would be the one performing the surgery.  He was a very nice man and did a great job explaining everything.

At different times I wanted to grab the box on Kleenex that was sitting on the table in front of us.  I wanted so much to break down and hold Tyson's hand.  Somehow I was able to keep my emotions under control.  I had Penelope safe and asleep in my arms to keep me occupied.  I could see the worry and pain in Tyson's eyes.  I wanted all of this to be a bad dream. 

I don't think either of us understood the extensiveness or complexity of the surgery until today.  I did't go online to do much research beforehand, for fear I would freak myself out.  Dr. MacDonald showed us a model of the heart and explained what he would be doing.  He also showed us her CT scan.  It was absolutely amazing to see her tiny heart on the computer screen.  It was so amazing to see every detail of her heart.  

They will have to go through the front of her chest, after which he will detach her left pulmonary artery from where it is currently and attach it where it needs to be.  He will have to dissect many sections of her heart, separating her esophagus and trachea.  He showed us on the CT scan how small her LPA is, in comparison to her right artery.  Her LPA is about 1/4 the size of her RPA.  He went on to explain how he was going to make an incision and put some extra material in between to make the artery larger. 

The risks of the surgery were hard to hear.  I have prepped myself the best way I know how, to hear what I had to hear.  He told us to that bleeding is always a risk since they are going to be working around one of the largest arteries in the body.  He explained the risks of a blood transfusion and the use of a bypass machine if needed.  He said there is a 50% chance they will have to use the bypass machine, which in turn would complicate the surgery.  There is also the risk of infection as there is with any surgery.  

We asked if this was going to be the last surgery for her.  He said that because of the size of her LPA and the scarring that will be involved there is a chance there may have to be another surgery down the road.  This hadn't even crossed my mind.  

We asked what would happen if she never had the surgery.  He explained to us the complications with her breathing and eating that could occur.  Both of which are obviously important.

The surgery could last anywhere from six to eight hours and her stay at the hospital should be between five days to a week.  I was bummed when he told me that when she is in the PICU we won't be able to stay over night with her.  Just thinking about being away from her breaks my heart.

We asked the doctor how many of these surgeries he has done before.  We were shocked when he told us, he has only ever seen something like this once in his lifetime.  He said her condition is so rare.  He did bring us comfort by saying although he hasn't ever done this particular surgery, he has done more complex and similar surgeries.  

We left the consultation feeling a bit overwhelmed.  It was good to finally have our questions answered but also disheartening at the same time.  I of course called my mom immediately.  She always knows how to make me feel better.  





She told me about a picture that sat on a doctors desk that she used to work for.  As soon as I saw this picture I was overcome with comfort.  I know that the Lord will be guiding the surgeons hands.  I know that with the Priesthood, my husband, and prayers and fasting, Penelope will make it through this.  She is much stronger than me and gives me so much strength.  I love my Savior and am at peace knowing he will be with me every step of the way.

When researching the bypass machine I was again comforted to find that President Russell M. Nelson worked with a team of doctors that created the first bypass or heart and lung machine.  President Nelson was also the first doctor to perform a successful open heart surgery, using a heart and lung machine, in Utah.  


Nellie's heart surgery is schedule for June the 5th.  They are trying to coordinate with the anesthesiologist schedule.  We are lucky enough to have Tyson's good family friend as her anesthesiologist.  He is the medical director of anesthesiology at Children's Hospital and is a member of the church.  Knowing that there is someone with the Priesthood in on Penelope's surgery brings me so much comfort. Also, looking back and seeing how Penelope's heart condition was found is nothing short of a miracle.  I know Heavenly has a plan and is so aware of Penelope.

I love this scripture.  It helps me gain strength from trials.

2 Corinthians 12:10
Therefore I take pleasure in infirmities, in reproaches, in necessities, in persecutions, in distresses for Christ's sake: for when I am weak ,then am I strong.
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8 comments:

  1. I too have a child (3 months old) with a rare heart condition. Even though we haven't been told when we will have open heart, it evidently will happen. The only hope that gets me through some days is my loving faithful God. What a great reassurance that he is control and loves my son more than I do. Prayers your way. Ashlee (Nashville,TN)

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  2. Sending lots of prayers your way Janessa. I cant imagine how you must be feeling right now, but I'm sure your baby will be in good hands. I love how you shared Elder Nelsons story about working on the first bypass machine. My grandfather was Elder Nelson's anesthesiologist for many years when that was going on.

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  3. Janessa,

    It is so amazing how these little babes pull through, they are so strong. There is a young boy in our ward who just went through his third open heart surgery and as I watched a video about his procedure I knew that there is a God that watches over these little children as they go through these difficult procedures and guides the hands of the surgeons. I admire your strength. Penelope is so beautiful!

    This little boy has done incredible and he went from being blue lipped and lethargic to a seemingly normal, energetic 4 year old that keeps up with his friends, which before was difficult for him. Modern medicine is amazing!

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  4. It was so hard for me to read this, I cannot imagine what you are going through or feeling. I just admire your faith, you are right to put your trust and faith in God. He is watching over you and your family, especially your little girl :) That is amazing all the men who are a part of this that have the priesthood! I am glad that you have a knowledge of the truth of the gospel, I couldn't imagine going through this all without it. My thoughts and prayers are with you and your family! I am a new follower and just adore your blog!

    xo,
    Shio

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  5. Gosh I could hardly read this through my tears, your strength and faith are unreal!!! We are praying for that sweet baby girl!!!!

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  6. Janessa! I just for teary eyed! I can't even imagine what you are going through. It's not fair that this has to happen to babies. I know she will be just fine though. You are in my prayers!!!

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  7. You are a strong mama! Like you said it is very comforting that we have the priesthood in our lives! We will be praying for your cute little Penelope.

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  8. My mom works in the PICU at Valley Children's Hospital, she said that you are absolutely allowed to stay with her starting the first night. They have sleep beds there for the mothers. She said if you wanted to go home and get some rest and have someone else stay the night with her, as long as you approve it, it is fine. The PICU is awesome and I know all the doctors and nurses there are wonderful! Penelope will be in good hands!

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