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

Hypo-plastic Right Ventricle Syndrome (HRHS)

This is what they think Peanut has at this point. I am really hoping they're wrong. But if not, I am bound and determined to handle this like a champ. (God(s) give me strength!)

They want me to deliver at Abbott Northwestern Hospital in Minneapolis, which is attached to Children's  Hospital via tunnel. When the baby is born they will take her right away for surgery. I don't yet know what that will entail at this point, but in 3 weeks when I see the neonatal cardiac specialist I should know quite a bit more.

I haven't yet read up on HRHS, I just discussed it over the phone with the genetic counselor from the Perinatal Clinic. She is just awesome and was very reassuring. She is, however, suggesting I have an Amnio done to check for other possible defects. I will agree to that, but not until the baby is completely viable, so, I figure no sooner than 30 weeks. The genetic counselor said that it is completely fine to wait, and wont harm the baby in any way. I believe the risk of miscarriage with Amnio is about 1 in 200 babies, but waiting until she is viable makes loss significantly less likely.

I am trying as best I can to relax and not worry too much about this. I know that could affect the baby as well. I did however want to update those who want to know.

Big sister's surgery went well!

Now Peanut and I are just trying to catch up on our self care. Ish! lol

But, we are very proud of Peanut's big sister. If you're interested there is a much more detailed update on my personal blog for Miss Emma.

I think we need a nap now.  ~.~

Taking care of big sister Emma.

Today Peanut and I will be taking care of big sister Emma before and after she has her tonsils and adenoids removed. We have the "mother load" of ice cream and popsicles for her to choose from along with a lot of pudding and jello.

We are not looking forward to surgery for big sissy to be, but we know it'll help her feel a lot better. I can tell Peanut is excited about her first time nursing, she's been kicking me all morning. That or she can feel mommy's stress. >.< Although I am trying my best to keep it to a dull roar for both my little ones. :)

Speaking of my cuties... here they are!

Thankfully we have help today so were not doing it all on our own. I have to say I wish it was at least one night in the hospital. I think that's the most nerve wracking part is bringing her right home and keeping her comfortable and safe and making recovery as smooth as we possibly can.

Babies and children should come with an attached warning sticker that surgical maintenance may be required. This is my second time seeing a child through surgery. Not that I'd put them back knowing in advance, but.. knowing in advance may have it's benefits? Then again... if I didn't know this was today... I just might not be so very darn nervous.