Incision, Cardiology, Next Steps

We had an eventful last two weeks. Since learning about the pulmonary stenosis that threatens the free blood flow to the lungs from Ry' heart and her decreased right ventricle function, her incision site got a localized infection. We checked into the hospital on Sunday 9/09 and were released after monitoring and IV antibiotics Monday afternoon. She’s such a trooper. Her site looks much better now and her zipper is looking beautiful!

We saw her cardiologist on Wednesday 9/12, and she said we can come back in one month and they will see if there has been any changes in her heart (Echo and EKG). They want her to get to a couple of month from birth and surgery to do the next procedure as they want the area nicely healed. We don’t want to see her heart condition declining so the next procedure will be done as proactively as possible.

So what is ventricle stenosis and what can be done? For Ry she will have a balloon procedure at some point in the next month or two.

Pulmonary valve stenosis

Source: http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002086/

Valvular pulmonary stenosis; Heart valve pulmonary stenosis; Pulmonary stenosis; Stenosis - pulmonary valve; Balloon valvuloplasty - pulmonary

Last reviewed: June 7, 2012.

Pulmonary valve stenosis is a heart valve disorder that involves the pulmonary valve.

This valve separates the right ventricle (one of the chambers in the heart) and the pulmonary artery. The pulmonary artery carries oxygen-poor blood to the lungs.

Stenosis, or narrowing, occurs when the valve cannot open wide enough. As a result, less blood flows to the lungs.

Causes, incidence, and risk factors

Narrowing of the pulmonary valve is usually present at birth (congenital). It is caused by a problem that occurs when the unborn baby (fetus) is developing. The cause is unknown, but genetics may play a role.

Narrowing that occurs in the valve itself is called pulmonary valve stenosis. There may also be narrowing just before or just after the valve.

The defect may occur alone or with other heart defects that are present at birth (congenital). The condition can be mild or severe.

Pulmonary valve stenosis is a rare disorder.

In some cases, pulmonary valve stenosis runs in families.

Symptoms

Many cases of pulmonary valve stenosis are mild and do not cause symptoms. These infants are usually found to have a murmur on a routine heart examination.

When the valve narrowing (stenosis) is moderate to severe, the symptoms include:

• Abdominal distention
• Bluish color to the skin (cyanosis) in some patients
• Chest pain
• Fainting
• Fatigue
• Poor weight gain or failure to thrive in infants with severe blockage
• Shortness of breath
• Sudden death

Symptoms may get worse with exercise or activity.

Signs and tests

The health care provider may hear a heart murmur when listening to your heart using a stethoscope. Murmurs are blowing, whooshing, or rasping sounds heard during a heartbeat.

Tests used to diagnose pulmonary stenosis may include:

• Cardiac catheterization
• Chest x-ray
• ECG
• Echocardiogram
• MRI of the heart

The health care provider will grade the severity of the valve stenosis to plan treatment.

Treatment

Sometimes, treatment may not be needed if the disorder is mild.

When there are also other heart defects, medications may be used to:

• Help blood flow through the heart (prostaglandins)
• Help the heart beat stronger
• Prevent clots (blood thinners)
• Remove excess fluid (water pills)
• Treat abnormal heartbeats and rhythms

Percutaneous balloon pulmonary dilation (valvuloplasty) may be performed when no other heart defects are present.

• This procedure is done through an artery in the groin.
• The doctor sends a flexible tube (catheter) with a balloon attached to the end up to the heart. Special x-rays are used to help guide the catheter.
• The balloon stretches the opening of the valve.

Some patients may need heart surgery to repair or replace the pulmonary valve. The new valve can be made from different materials. If the valve cannot be repaired or replaced, other procedures may be needed.

Expectations (prognosis)

Patients with mild disease rarely get worse. However, those with moderate to severe disease will get worse. The outcome is good with successful surgery or balloon dilation. Other congenital heart defects may be a factor in the outlook.

Most often, the new valves can last for decades. Others wear out and will need to be replaced.

Complications

• Abnormal heartbeats (arrhythmias)
• Death
• Heart failure and enlargement of the right side of the heart
• Leaking of blood back into the right ventricle (pulmonary regurgitation) after repair

Heart Hope, the movie

This short trailer was hard to watch because it showed so many scenes during and after surgery that reminded me of all the things I saw when we were allowed to see Ryleigh after her surgery. It's very fresh still, but my reality. If you have time, watch this trailer and the movie.

http://www.heartsofhopethemovie.com/Trailer.html

Expect the Unexpected

I guess a part of our new normal is to not expect the expected when we go see her doctors. We had a cardiologist visit this past week and I thought it would be a simple, “hey she’s doing great see you in a month or two”, but it turned into more. Ryleigh’s heart is showing signs of loss of function in the right chamber, some valve leaking, and narrowing of the vessels. What all of this means is the little thing will need to be watched closely for heart failure until her next procedure which should be in the next 6 weeks. I am not sure I caught everything her cardiologist was telling me as I was a bit dazed but it appears the right chamber has decreased function because it is overworked due to the narrowing and leaking of the vessels. She also went on heart meds to lower her blood pressure to give her overworked heart a break.

While this can be viewed as a blow, it is not below the knees and we will recover. Her story has been primarily uneventful, so we expected some hiccups along the way. While it still upsets me, I can’t focus on what I can’t control, so I am enjoying every moment with her because the next one is not guaranteed. If I spend my time focusing on the negative I won’t enjoy all the positive!

She will be visiting her cardiologist in 2 weeks to see how everything is holding up, she wants her to be at least 2 months old before another procedure. It will be in the Cath Lab and she should go in and come out the next day latest if all goes as planned.

To lighten the mood here are some recent photos!

I'm cute and I know it.

Ryleigh and her doll

Look at me lifting my head!

Kiss Kiss

She stares at the doll in a loving but creepy way!



Peek-a-boo, where's Ryleigh?

Mommy and me!

Big brother Cael and Ryleigh, true love.

Look how loooong I am!

Mommy and me!

A Photo Worth a 1,000+ Tears

As a heart mom, we see our babies unconditionally as they are, but it may be hard for others to understand what we see and go through each day.  While we were in the PICU I refused to allow any photos taken of her hooked to the life support machines, IV’s, tubes, her chest open, chest closed with stitches and bandages, etc, it wasn’t an image I wanted looming for years to come, haunting me, haunting her.

One of the PICU nurses came in and saw my husband on one side of her bed and me on the other both holding a hand each looking down at her – she got excited and said, “do you want a photo, this is a photo moment.” I looked at Craig and looked at her and said “no”, she was shocked, she said, “this is a beautiful photo though, you don’t want a picture of it? I wish you could see what I see!”, and I said, “it is a memory I will always keep in my mind, but I don’t want the other elements in the photo”, she was surprised, but to her she - sees it each day and of course it was not her child laying there, so for her she was used to it, but as a mom I wasn’t and would never be.

I will never forget the day I saw her right after her surgery with her chest open and the next 9 days after recovering, it is not how I choose to document the ordeal, her memory will live strong, but her present is what I choose to live in.

Now that we are over 2 weeks out from surgery, I look at her incision and cry; I am amazed at her resilience and strength. I see her surgery sweet spot and it brings a flood of emotion – of the day, of the event, of her life. I am going to share the one and only photo that I will take of her incision not for exploitation, but to show that my strength too has grown.  

I love her so much!

Surgeon Visit - Update

Today we took Ryleigh to meet with her surgeon for a post op visit. Routine. They took xrays to look at her chest and heart. Heart looked great normal size. Such an awesome visit today! Ryleigh's surgeon says her heart looks fabulous, no issues, slight murmur they will monitor that, no chest swelling, lungs look and sound great. She's even gained weight & grew an inch! 7lbs 6 ounces, 20 1/2"!

Chest healed nicely, pretty zipper! :-) My girl! So pleased! No stent needed at this time to fix the narrowing of one vessel. Her surgeon says it’s too early and we will monitor it :-). That's awesome.
Some say she is a miracle, I would agree.

She has to stay isolated from crowds and people who don’t live in our house until after her vacinations, but over all that is not bad, so we have just over 4 weeks left on “house arrest” I am ok with it because I get to love on her all day! J

While she is the best case scenario, we are not taking any chances, momma bear is very protective of her baby cub! A cold may be annoying to healthy people, to a heart baby it can be deadly. I think we will stay home and wait it out. J Better to be safe!

Lots of love!

August 29th we see her Cardiologist for an echo and follow-up, routine! More to come.

First 4 days at home

It has been an amazing 4 days since we brought her home, she is acting so much like a normal newborn, no special needs, good appetite, likes to let us know when she is hungry or not happy, loves to sleep, looks around, so alert, lots of facial expressions. We are enjoying her so much!
Her brother has been such a huge help!

We meet with her surgeons on Friday (8/17) and her cardiologist, we will hear the game plan going forward and all about her upcoming surgery.

Momma is tired, I forgot how much work a newborn is!

The Ah Ha Moment

I have waited for this moment and it is better than I could have imagined! Ryleigh in her crib, moments after walking in the door!