So this is what they meant.

Shortly after I posted yesterday’s update, we went back to the NICU to spend some time with Jillian. As soon as we walked in, the wind was taken out of our sails.

We noticed that there was a ton of saliva around her mouth, which was different. The nurse mentioned that she had just flushed the breathing tube, but we still didn’t know what that meant. The doctor came over and explained that there had been some blood in the tube due to PDA (patent ductus arteriosus). I’m sure I won’t explain this correctly, but there’s a duct between the heart and lungs in the fetus that normally closes right away, but with preemies, it sometimes stays open. We already knew Jillian had an issue with this because of an echocardiogram (which was done because of her oxygen levels and a heart murmur), and it has been treated with medicine. Yesterday afternoon, we were told that the medicine was helping (her murmur was gone), but last evening, the blood in her tube showed that there is too much fluid in her lungs, and surgery to fix the PDA was mentioned again. She’ll get another dose of the medicine today, and we won’t know until at least tomorrow how it’s helping. All I know is that the thought of Jillian having surgery makes Dave and me sick. We’re obviously hoping for the best.

She was also even more active than she’d been earlier in the day. Her arms were flailing way too much, and she was kicking up a storm. I hate to think that this was due to her being in pain, but it probably was. All of this activity was making her heart rate go up and her oxygen saturation levels go down. The nurse had me place my hands over her arms and legs to keep her still, and we talked to her gently to try to soothe her. Holy crap, that kid is strong. When I was still pregnant, I couldn’t wrap my head around how something so tiny could kick and punch so hard. Well, she does it out here, too. While it’s amazing that she’s so strong, it would be better for her to relax and save her strength for everything else she’s going through. The good news is that she had calmed down and her heart rate was at a better level when Dave went down in the middle of the night to drop off the milk I pumped.

So here we are. No matter how much someone prepares you for the ups and downs, there’s no way to steel yourself for it. No matter how guarded we were, and no matter how hard we tried not to get too optimistic, it was quite the kick in the balls to have a bit of a setback. Setbacks make saying goodnight a million times more difficult than it already is. They make falling asleep next to impossible, even with sleeping meds. They make your heart sink the moment you wake up. I’m in so much pain when I wake up due to the c-section, but that pain is like a pinprick compared to the aching in my heart.

Right now we’re getting ready to go down to say good morning (there was a shift change at seven, so we wanted to stay out of the way for a little bit). As much as we can’t wait to see Jillian, there’s a part of me that wants to curl up in a ball and hide from the world. I’m afraid that we’ll hear more bad news, even though we know the doctor would have come to us already if things had taken a bad turn.

I’m being discharged from the hospital tomorrow. As much as hospitals suck, I’ve never dreaded anything so much in my life. It’s hard enough being a floor away from Jillian. Leaving her here is probably going to be the most difficult challenge we’ve ever faced. I know that we’re lucky in that we can get here in under ten minutes (assuming traffic isn’t bad and we can find a cab quickly), which is wonderful compared to families that don’t even live in the same state, but the thought of her being alone here is awful. We know she’s surrounded by the brightest, most caring people we’ve ever encountered who are doing everything they can to save her, but it only comforts us to a certain point.

Speaking of going home, I’d like to ask that people email or text us before calling once we return home. I’m sorry if it’s an inconvenience, but we already jump about 20 feet in the air any time a phone rings, and I imagine it’s about to get worse. I’m sure we’ll relax eventually, but right now it’s just easier on us to make outbound calls.

11 thoughts on “So this is what they meant.

  1. Oh, Megan. I don't know what to say except I love you and I'm here and I'm pulling for Silly Jilly. Thinking good thoughts.

  2. I hope the medicine works! If not, and she needs the surgery, at least the recognised that fact and it is in her best interest. She is strong and will pull through it!

  3. Can you sleep in her NICU room? My baby was in the NICU and while the room was tiny, they did allow one parent to stay the night. If you're pumping it will help your milk to see her while you pump. Best wishes! I can't imagine how hard this is for you.

  4. I know exactly how you feel, when my babies were in the NICU, I hated hearing the phone ring. I also hated the question, "When are they coming home?" I also cried every day and night they were in the NICU, until the last couple of weeks. Being discharged and going home without them was the worst, the house never seemed so empty. I just wanted to let you know you are not alone in those feelings. Also, my NICU didn't let me touch DS for awhile but they did let me stroke his temple and that always calmed him and DD. They said touching them was too much stimulation but for some reason stroking the temple did not over-stimulate them. Can Jillian sleep on her belly yet? Mine were always much more calm on their stomachs because their arms and legs couldn't flail around. Come by the preemie board on The Bump, it is a great group of women and they helped me through everything. Praying for Jillian. HUGS

  5. My husband and I are praying for you. I cannot imagine what this is like for you. Little Jillian is a fighter and I cannot wait to see a miracle worked and to hear your joy when you get to share this with us! 🙂

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