Tuesday, February 16, 2016


Look at this girl with no tubie!

So we've started doing a new thing with Helena to help her get off that stupid NG tube. We pull the tube during the day, and at night we put it in and using our fancy new feeding pump, we give her a ton of food super slowly throughout the night to make up for what she doesn't get during the day. It's been a rough couple of days adjusting to this new routine, but she's now taking 1-3 oz of formula at every feeding and eating baby food three times a day.

Mmmmm, apples

After a month of no weight gain, and pretty much puking up half of every meal we gave her through the tube we decided something needed to change. So under the guidance of her pediatrician and cardiologist, we engaged in what I lovingly referred to as "Starvation Therapy". We pulled the tube out and offered her the bottle and the food and nothing else for 36 hours. It sucked. She lost a ton of weight, she was cranky and hungry and miserable and it felt awful to know that she wasn't happy. BUT. But at the end of the day she took 3.5 oz from her bottle. She finally made the connection that hey, this bottle isn't going to hurt me, it's going to give me food and make my tummy feel good. I like this. She finally made the connection that the spoon isn't scary, it's got delicious baby food on it (gross) and it tastes better than my formula and also fills me up. Once she made that connection we started doing the tube/pump at night and she's been gaining weight ever since.

In less than a week we went from taking nothing orally to getting a fair amount of formula in her, and eating three "meals" a day. In less than a week we went from her crying and turning away from the bottle/spoon to her opening her mouth in anticipation of them.

Without that tube in, she's a new baby. She's so much happier and vocal and moving more. And, best of all, she hasn't puked once since we started this. I'm doing like 1/4 the amount of laundry I was doing before we started. 

She's still getting the majority of her nutrition from the feeding tube at night, but she's making great progress in taking more and more orally. And we're so happy to see her pretty little face without that tube all day.

Tuesday, February 2, 2016

CHD Awareness Month 1 & 2

February is Congenital Heart Defect Awareness Month. I'm sure I've spammed you enough that now you know that 1 in 110 babies is born with a heart defect, making it the most common birth defect.

I didn't know that until Helena was diagnosed, so I'm guessing you didn't either.

In honor of CHD Awareness Month, I'm going to post following the Mended Little Hearts prompts - one for each day.

Today I'll cover February 1st (Diagnosis) and February 2nd (Surgery/Meds/Intervention).

Diagnosis. Oy. Well, as I've written about before, Helena's diagnosis came at our 20 week ultrasound. We went in assuming that everything was fine, and already knew she was a girl. When the ultrasound tech goes from super chatty to super quiet and spends a great deal of time on your baby's heart you know something is up. She left the room, saying that the doctor would be in shortly to go over everything with us. When the doctor came in, he immediately told us that there was something wrong with the baby's heart, but that he wasn't sure what. Luckily for us, the pediatric cardiologist was at the hospital that day and agreed with meet with us immediately. He took a look and said he wasn't sure what was going on because she was small and moving too much. When we went back four weeks later, he confirmed that she does have a TGA with pulmonary stenosis, and a VSD. We've also learned that her coronary artery is in a weird place, because why not?

What's weird about getting Helena's diagnosis is that neither My Husband nor I were shocked by it. I cried. We were upset and sad and scared, but we weirdly weren't shocked by it. I'm not sure if it's because that's just how we are - we see the hand we're dealt and we immediately figure out how to play it, or if there was something else going on. But we weren't shocked, which is weird.

I feel lucky that we did get a diagnosis so early. We were able to monitor her throughout my pregnancy and make sure she was growing and developing well. We were able to switch hospitals so that I could deliver at the hospital with the best pediatric heart team in the are. We knew. We knew she had a serious defect. We knew she wouldn't be coming home with us. We knew there was a lengthy NICU stay ahead of her. We knew it was going to be rough. We had time to come to grips with the road ahead of us, and to prepare ourselves and the boys for it. We were able to get our support network in place. We were so very lucky.

We were lucky that we had a great ultrasound tech, and a doctor who realized something was wrong. We were lucky that our amazing cardiologist was on the floor that day and that because he's amazing he agreed to take time out of his day to meet us when we didn't have an appointment. We were lucky to live 30 minutes from the best hospital for Helena. We were just so very lucky. I couldn't imagine thinking everything was fine and delivering her and wondering why she was turning blue. It was scary enough as it was, with us knowing as much as we did. I can't imagine the parents who aren't lucky enough to find out about their baby's heart defect before birth.

Surgery/Meds/Intervention. Sometimes the though of everything Helena has gone through in her little life blindsides me and I just completely lose it. No baby who's only six month old should have had to be put under and cut open. No baby should have to get scared anytime she's naked on a table with a stranger because she already knows bad things happen to her when that's the situation. No baby should ever have to suffer pain, or be scared the way she has been. And it's not over. We still have her big corrective surgery ahead of us. No adult should have to suffer through that - let alone a little baby.

Helena has already had two cardiac cath procedures, and one surgery in which they did have to open her up and break her sternum to put in a shunt. She's been intubated for weeks at a time and had IV lines put in both her little legs. 

This is Helena 2 days after her shunt surgery, so she's just over two weeks old here. I wasn't allowed to see her the day after it because I came down with a crippling stomach flu the night after her surgery.

Helena in recovery after her most recent cardica cath. The owie on her cheek is from the tubie tape.

Helena isn't actually on many meds, considering what she's got going on. She's on Lasix, a BP med, and baby aspirin for her heart. Throw in some reflux meds and that's it. The nice thing about her NG tube is that I don't have to battler her to get her to take the meds. That's one thing I'm not looking forward to when she finally does start eating orally.

When she does go back in for corrective surgery, we're looking at about a two week hospital stay if all goes well. Then another 6-8 weeks of restricted activity while her sternum heals again. 

It's amazing how quickly something becomes "normal". It's normal for us now to have to resinert her NG tube. It's normal to have to give meds four different times during the day (they can't all be given at the same time because some interact with others badly). It's normal to take her oxygen levels a couple times a day. It's normal to do daily weight checks. It's normal to constantly be checking her coloring. This is just what our life with Helena is like. This is our new normal. This is what normal is like with a Heart Warrior.

So now I'm going to ask you for money cause that's how I roll. 


Go there. Give me money so that more research can be done to figure out what causes CHD's, and to help other families who aren't are lucky as we were with our diagnosis. Go help our Heart Warriors.