Bella's heart

Sorry, I know it's been a long time since I've posted. Bedrest is a lot tougher than it sounds and as I still have contractions from time to time, it's a bit uncomfortable to sit up and type for a nice full post. Actually, did I even make the 24 week post? I think I missed it. I know I snapped a quick pic, but I think I forgot to post.  I am so focused on Bella baby's heart and health overall and trying to give her the best possible chance, other things have slipped to the wayside.

Anyhow, I'm having a good bit where if I lay down she kicks and it hurts, so I thought I'd sit more upright and that's a good position for posting.

When we saw the pediatric cardiac specialist and had the more in-depth ultrasound and echo-cardiogram we were able to better see what exactly is wrong with her heart. I am going to do my best to give at least a general overview as it's very difficult to remember what you're hearing in this type of situation.

The overall diagnosis that the other's fit under is still HRHS... Hypoplastic Right Heart Syndrome

Beyond this, this is what they were able to see at the 23 week exam (Which happened early due to the preterm labor.)

Tricuspid atresia
Definition
By Mayo Clinic staff
Tricuspid atresia is a heart defect present at birth (congenital) in which one of the valves (tricuspid valve) between two of the heart's chambers isn't formed. Instead, there's solid tissue between the chambers.

If your baby is born with tricuspid atresia, blood can't flow through the heart and into the lungs to pick up oxygen as it normally would. The result is the lungs can't supply the rest of your baby's body with the oxygen it needs. Babies with tricuspid atresia tire easily, are often short of breath and have blue-tinged skin.

Tricuspid atresia is treated with surgery. Most babies with tricuspid atresia who have surgery will live well into adulthood, though follow-up surgeries are often needed.

 "Some" Pulmonary valve stenosis

Definition
By Mayo Clinic staff
Pulmonary valve stenosis is a condition in which the flow of blood from your heart to your lungs is slowed by a deformed pulmonary valve, or a deformity above or below the valve.

Adults occasionally have the condition as a complication of another illness, but most of the time, pulmonary valve stenosis develops before birth.

Pulmonary valve stenosis ranges from mild and without symptoms to severe and debilitating. Mild pulmonary stenosis doesn't usually worsen over time, but moderate and severe cases may get worse and require surgery. Fortunately, treatment is highly successful, and most people with pulmonary valve stenosis can expect to lead normal lives.

 Ventricular septal defect (VSD)

Definition
By Mayo Clinic staff
A ventricular septal defect (VSD), also called a hole in the heart, is a common heart defect that's present at birth (congenital).

A baby with a small ventricular septal defect may have no problems. A baby with a larger ventricular septal defect or associated heart defects may have a telltale bluish tint to the skin — due to oxygen-poor blood — often most visible in the lips and fingernails.

Fortunately, ventricular septal defect is readily treatable. Smaller ventricular septal defects often close on their own or don't cause problems. Others need surgical repair, sometimes not until the condition is first detected or symptoms first develop in adulthood. Many people with ventricular septal defects have normal, productive lives with few related problems.

 Okay and this one has a diagram, we'll see how it posts... I'm hoping well. lol

Congenital Heart Defects: Hypoplastic Right Ventricle

The right ventricle is small and weak because the tricuspid valve guiding the blood from the right atrium to the right ventricle did not open in the very early embryonic weeks of the baby's life, and so no blood came through to make the right ventricle grow. This condition is also called Hypoplastic Right Heart.

So, now you all know about as much as I know about little Bella's heart. Her heart is the reason it's SO imperative that I carry her as long as I possibly can. She must be at least 5 lbs before they can preform the required surgeries on her heart. They will do 3 separate surgeries, called (in order) Stage 1 (around time of birth), Glenn Procedure (around 3 months old) and the Fontan procedure (at age 5).

The Fontan procedure is the longest and most complicated. They said she has about a 70% chance of making it to or past age 5, but some people with these issues have lived into their 50's. I think my Bella will be one of those. I am giving her all of my fighting spirit that I can, I am hoping, praying and wishing for her to have strength.

Okay, I should lay my happy butt down again. I'll be darned if I am not keeping this baby in as long as I can.

To our readers, thank you for being here, for caring, for your thoughts and prayers. Please keep it up, because they work, I have faith that they work.

Much love

Chele and Bella

Sometimes the hardest thing to hear...

Is I'm sorry. If I tell someone about Isabella's heart condition, I can hear the words before they're even spoken. And while I know full well, that those words are meant to comfort, support, love, it doesn't make it any easier to hear. I know without a doubt that it isn't said maliciously. I just want to make that clear.

From my side of things, I'm sorry sounds like the worst case scenario outcome. I'm sorry sounds like people don't think Bella baby will make it. And I once again, know that isn't the intention.

How do I get used to hearing it? How do I hear it and not break down and cry? How do I hear it and take it in for the strength behind the words, the meaning that they really have in mind? Why on earth is it so hard to hear two simple words that I know are well meant?

I struggle each day with what Bella will likely have to endure to live even a semi normal life. I struggle with decisions I know I may have to make. I struggle to just not focus on it and become consumed with despair. But for some reason hearing I'm sorry makes it feel like that is exactly what I should do.

I've seen two babies lost to CHDs. Justin, my nephew passed at 6 months old. He'd be 15 now, I believe, had he survived. And more recently Lynnea passed away from complications from a similar heart defect, HLHS. Both of these sweet innocent babies were the first thing I pictured when the Peri told us there is something wrong with her heart.

I know this journey will be just that. I know it wont be peaches and cream and I know that both Bella and I are going to have a fight on our hands. But I trust that we're going to be strong enough to tackle this head on. I want so badly for Bella to be a success story for HRHS and I believe in all my heart that she can be. I'm doing all I can to pass her the fighting spirit that has carried me through life thus far. If she has that, I know she can be strong.

I'm sorry this post is so long (look at that, I said those words!) and if you read it this far, I'm impressed. Please don't tell me you're sorry. Please just keep this little one in your thoughts and your prayers if you pray. Every little bit helps.

More bad news.

So, I didn't get the second U/S, the doctor made it clear that it wouldn't change anything. She just kept telling me how sorry she is that this is happening and asking if I'm okay. No, I am not okay. I'm not even a little okay. Then she told me something the Peri's office didn't happen to mention.

Velamentous cord insertion is an abnormal condition during pregnancy. Normally, the umbilical cord inserts into the middle of the placentaas it develops. In velamentous cord insertion, the umbilical cord inserts into the fetal membranes (choriamniotic membranes), then travels within the membranes to the placenta (between the amnion and the chorion). The exposed vessels are not protected by Wharton's jelly and hence are vulnerable to rupture. Rupture is especially likely if the vessels are near the cervix, in which case they may rupture in early labor, likely resulting in a stillbirth.

Early detection can reduce the need for emergency cesarean sections.^[1]

Now, not only do we have HRHS, but we also have velamentous cord insertion. This pregnancy just keeps getting  more and more complicated and risky.

I am so pathetic I asked if there is any way they could have me admitted to the hospital for monitoring of Isabella, she said no, they wouldn't even consider it.

So, here we are, she has a bad heart, we have a bad cord. The cord could be an issue at any time, especially during birth. It could lead to her being stillborn. The heart "shouldn't" be an issue until I have her. How do I keep my sanity through this? I've lost 3 more pounds since the Peri visit, which means I am 13 pounds under my pre-pregnancy weight at this point.