Maddie has been extubated! That means she is off the ventilator, and no longer has a tube going into her airway. She is breathing on her own, although she has a nasal cannula that is providing higher-quality oxygen for her to breathe. Right now the oxygen she’s getting from that is 30% oxygen, while the room air that we all breathe is about 20%. The goal is to wean her off the nasal cannula, and the doctors and nurses are already doing a good job of it. When she was first put on the cannula, she was breathing 50% oxygen. She’s on the right track!
I was there when she was extubated and I was sooo happy about the timing. For the last week, since they mentioned extubation, I’ve been asking when it will happen. She has been on “extubatable settings” for the last week, so I wanted to know why they were holding back. The doctors were a bit concerned by some belly distention Maddie has. Basically, her stomach and intestines were filled up with air, which is a common problem among ventilator babies. A ventilator forces air into the lungs, but sometimes some escapes the airway and goes into the stomach. At first the doctors were waiting for Maddie to pass the air on her own (baby farts!). When that didn’t happen, the nurses gave Maddie a suppository to get her bowels moving. That seemed to do the trick. After a few bowel movements, the distention has gone down considerably. When it was at it’s worst, you could look at her stomach and literally see the coils of her intestines pressing against her skin. It looked sooo painful. Now her belly is soft and chubby.
The act of extubating wasn’t very remarkable. When the doctors decided to extubate, Maddie’s nurse grabbed a respiratory therapist so they could do the procedure right away. Her nurse and I were joking that we wanted it done fast so the doctors couldn’t change their minds! The hardest thing about the extubation was removing the tape that was holding the tube in place. They place this special substance on her skin anywhere there is going to be tape, it helps protect her skin from the rough adhesive. The nurses use a special adhesive remover whenever they take something off her skin, even bandaids, since preemie skin is so delicate. Once all the tape was removed, the tube came right out. We all expected Maddie to give us a big scream, but she didn’t! Instead, she just looked around at all of us like, FINALLY IT’S OUT!!! YAY! It was really cute. I was so excited to see her face without all that tape on it. Her cheeks are so chubby, it’s hard for me to resist pinching them.
In the picture you can see some of that skin stuff on her cheeks. The blue tube in her mouth goes into her stomach. It’s there to help pull out some of that escaped air. At some point, that tube will also help her with her feedings. Right now, Maddie gets all her nutrients through IV fluids. They are doing their job, as she’s up to about 3 pounds 14 ounces. As soon as her belly issues are totally clear, the nurses will start to feed her. First, she’ll be fed through that tube to get her digestive system moving. She’ll be fed in tiny increments to see how well she tolerates food. Once she’s mastered tube feeding, we’ll have to teach her how to use a bottle. Her nurses think she’ll do well with that because she loves to suck on a pacifier. So luckily, she hasn’t lost that sucking reflex! She loves to suck on her hands, too. When they start to feed her, they’ll use frozen breast milk that I’ve brought in, so she’ll get all those important nutrients and antibodies.
Now that she’s off the ventilator, it’s much easier to hold her. I’ve held her more in the last two days than I did the previous three and a half weeks combined. Right after she was extubated, her nurse swaddled her up and put her in my arms. It’s so nice to be able to hold her more often. Of course, it will be nicer to be able to hold my daughter without having to ask permission! But that will come eventually. She loves to be held. She opens her eyes and looks around, and her vital stats are perfect when Mike or I hold her. In fact, the first time I heard her cry (since right after she was born) was when I went to put her back in her incubator. I had my camera so I took some video footage.
Her voice is hoarse from the ventilator tube! It’s so freaking cute and when she cries I crack up. She sounds like a squeaky toy! I know her crying will soon have the opposite effect on me, so for now I am just enjoying the raspy voice.
So, big week for Maddie! She is also getting her last dose of antibiotics today, so soon her visitors won’t have to wear gowns and gloves. It will be nice to feel her soft skin again. Maddie has been doing so well lately, we are so thankful but still always waiting for the other shoe to drop. She has a bunch of hurdles we haven’t even reached yet (eye exams, hearing exams, apnea, feeding), so it’s still a long road. It’s so emotionally exhausting, even when things are good. There is an undercurrent of anxiety and stress that is with us constantly. We do our best to block it out, but often it sneaks up on us and knocks us out of commission for a day or two. Luckily we haven’t been hit by it all at the same time, so one of us picks up for the other. We feel so lucky we have each other for support, and our families and friends have amazing, too. And of course, we have Maddie. She has been the best support, it’s hard to imagine leaning on a little three-week old baby, but we do. When we hold her, we just picture bringing her home.