G-tube or no G-tube? That was the question.
In honor of Heart Month and Wear Red Day for our heart warriors, I wanted to get a blog out!! It has been a while since I wrote about our story so here it is!
While home we are inevitably sitting and watching Gracie every day. Does she look puffy? How is her breathing? Can I pick her up under her arms yet? How is her scar? Will her Pulmonary Vein Stenosis come back? Then you spiral to what does her future look like? Will kids make fun of her at school for her scar? Will my identical twins EVER look identical?
I know the last few questions seemed so minor compared to the others, believe me, I know! But this is the realization of the rabbit hole I would endure each night as I lay my head down.
The girls were REALLY recognizing each other now, I knew there was going to be one very special bond forming here. I think from the moment they were reunited in the hospital just changed everything.
The realization of PVS is like being hit by a freight train, over and over again. It is aggressive and deadly. We had a scheduled echo for March 9th which was 3 months post-op to take a look at her veins, hoping they are still wide open and there will be no intervention needed!
Recap of what PVS is: Pulmonary vein stenosis is a rare and chronic condition that affects the blood vessels that deliver newly oxygenated blood from the lungs back into the heart. When any of these four veins are narrowed or blocked, the heart does not receive the oxygenated blood it needs, leading to serious health complications affecting the heart, lungs, and other body organs.
She will need a new stint for her Superior Vena Cava--> is one of the two largest veins in the body and is considered one of the many systemic veins. Systemic veins are those carrying deoxygenated blood from various areas of the body to the heart and are vital to the function of the cardiovascular system.
It is unknown when we will need to get this stent so for now we continue checkups and echos, as well as watching for any signs in the head and upper neck areas. Stents do not grow with you so this is why they need to be replaced as kiddos grow. Once again the anxiety of waiting for something to go wrong. How This is usually an overnight 24/hr visit then back home. Let me tell you.... one night is too long!!
We are almost 12 lbs, kicking, babbling, giggling, smiling, holding our own head up, rolling from front to back, and almost back to front. Also lots of shaking toys, grabbing mommy’s face and daddy’s beard. Her favorite is when I get her out of her crib in the morning she gets so excited she literally squeals.
Needless to say, she's my precious girl, I couldn't imagine not hearing those squeals, giggles, and babbles. It's hard not to think of the "what ifs". I think a lot about how we were originally told "The PAPVR surgery recovery is about 10-14 days". How naive I was to think that we would be home in less than two weeks. I know I was just a hopeful new mom, thinking we'd get newborn pictures, the rest of the family would meet her and all would be normal as it should be.
I think that I continuously (even to this day) grieve what we were SUPPOSED to have.
On March 3rd our sassy butt pulled her feeding tube out ONCE again, so back to the clinic we went! I'd be lying if I said I didn't secretly love seeing that beautiful face NG-free. Daddy was still at work so the whole gang went in their matching outfits! We were lucky this time that the clinic was still open, generally, we do this at night and end up in the excruciatingly long ER!
I could put her NG back in, and I did try it once but there is a chance that you can end up in the windpipe instead of where you should be and after Gracie's history it just is not a chance that I was willing to take.
Holding down your child for any procedure knowing that they are uncomfortable is heartbreaking. I knew a new NG didn't hurt Gracie, but I hate seeing her tears after all she's been through. Luckily, everything went perfectly, We got our paperwork and headed back home.
THEN......We pulled it out AGAIN! so this started a whole new conversation...Do we put a G-tube in? Or do we stick to the bridled NG? I was very conflicted as a g-tube meant another surgery and I just wasn't sure I wanted to put Gracie through that! Hell, I KNEW I did not want to put her through that!
Some kids have medical problems that make it hard for them to get enough nutrition by mouth. A gastrostomy tube (also called a G-tube) is a tube inserted through the belly that brings nutrition directly to the stomach. It's one of the ways doctors can make sure kids who have trouble eating get the fluid and calories they need. A surgeon puts in a G-tube during a short procedure called a gastrostomy. The G-tube can stay in place for as long as a child needs it.
We were a little over a month away from Gracie's 1st birthday, and I wanted to be able to have her home and celebrate with her twin sister and family! So we took the risky decision to schedule her Gtube surgery for April 6th knowing we should be in the hospital overnight or 2 nights at most. But we all knew Gracie was capable of throwing us all for a loop and surprise surprise my little pumpkin did just THAT!
Do you have a heart warrior and want to tell your story? Please feel free to sign up at our Adopt a heart mom for a slot to do so!
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