The following picture is about 6 pm that day.
That picture is titled "Blue Baby". The shoe fits. At the emergency room, where she went for evaluation, her pulse ox was down to 80. Later that night, she was transferred to the cardiac floor for monitoring.
Lily actually wasn't put on oxygen until she'd been there for a couple of days. For the most part, it was just EKGs and monitoring everything constantly. I would go visit Lily, go to work, sometimes go back to visit Lily, go home and eat and sleep...repeat. The only variation was that sometimes I visited her in the evening instead of the morning.
They had decided to keep her until June 22nd to do a heart cath, because if the pressures in her heart were high, then they couldn't do surgery because "She wouldn't make it off the operating table." Her OHS (Open Heart Surgery) was scheduled for June 25th. Saturday night, Lily's pulse ox dropped into the fifties. They had to work with her and move her around and stuff to get her pulse ox back to normal (at least normal for her.)
Well, that Tuesday, they wheeled her down to the Cath lab. Some time later, I think about an hour later, the doctor came to talk to me.
Lily was now on a ventilator. If they took her off the ventilator, it would kill her. Apparently her lung had collapsed. Lily's left bronchus was, in just a matter of anatomy, between her pulmonary artery and her aorta. Due to the pressures in her heartl/lungs, that left bronchus had been collapsed.
She was admitted to the CICU (Cardiac Infant Care Unit). She was heavily sedated, but they had to keep sedating her. One of my lighter memories of that time is about this sedation. I had just walked in the door to her room, and the nurse that was stationed there came up to me, put her arm around me, and said "Honey, normally I encourage parents to talk to their baby, to interact with them, let them know that you are there... HOwever, in this case...If you wake her up, I'll kill you."
Hence, the "Feisty Lily" nickname. She quickly developed a reputation for being a stubborn pain in the ass, and I don't know how many times I heard someone say something along the lines of "You can definitely tell she's a redhead" or "Oh, so THIS is LILY!!"
June 24th, the cardiac surgeon came to me and said that we were going to go ahead and do surgery. Keep in mind, this was not long after I had been told that the pressures in her heart were very high (and right before that was that they couldn't do surgery if the pressures in her heart were high because it would kill her.)
This is Lily in the CICU before surgery.
Her hands were tied to her legs to keep her from squirming and trying to yank the ventilator out.
However, that night, Lily unexplainably popped a fever. So, they pumped her full of broad spectrum antibiotics. Surgery was put off until June 30th. June 28th...Lily popped a fever again. We thought we were going to have to put it off again. However, no, on June 30th, early in the morning, Lily was headed into surgery.
I bugged the doctors way in advance to make sure I was allowed to hold her before surgery. Due to having the ventilator in, I hadn't been allowed to, and I wanted (one last) chance to hold my baby (just in case). So, I did, in the pre-op area, while one of the scrubbed in people pumped air into her lungs, I cuddled her briefly, gave her a kiss, and told her I loved her.
Then we waited. We waited, and we took walks, and we waited, and we took walks. An hour and a half later, she was out of surgery. About a half hour after that, I got to see her.
Oh, my god, there are things you never want to see, and your baby after OHS is one of them.
She was under a paralytic on top of her sedation, so she wasn't moving at all. Her skin was gray. One of her eyes was partially pulled open by this thing that they had on her forehead to measure the flow of blood to her brain. There was a large bandage on the center line of her chest. However, the absolute worst part were these three large tubes that were coming out of her, from below her ribcage. These tubes were pumping blood and other discharge out of her chest cavity.
She looked dead, except for the stuff coming out of those tubes, and the reassuring beeps of the monitor. She looked dead, and I thought, for a brief moment, that I had lost her - even if her heart hadn't stopped yet, I had lost her.
She was still going to be on the ventilator for a while. The surgeon said he manually manipulated her lung while he was in her chest - and that it was literally stiff.
My mom was there, and so was Kyle. Mom instantly burst into tears. I didn't, but I couldn't handle consoling mom. I instead whispered to Kyle to keep her in the room, and I walked outside to the park. I sat there, my arms around my knees, and nearly lost it. However, instead of losing it, I called a couple of my March Mommies and let them know what was going on.
A few days later, the chest tubes were removed. Well, all except for one that they ended up putting in to the area around her lung to drain fluid off. 
She still hadn't opened her eyes, however, it wasn't too much longer until she did. Shortly after they put the tube in to drain fluid off her lungs, they took Lily off the ventilator, and put her on the CPAP. She looked like an alien. Actually, about the time she opened her eyes for the first time, I got to hold her while she was still on the ventilator. We had to be very careful, but it was wonderful. As soon as she was placed on the CPAP, I could hold her a lot more though. Oh, btw, CPAPS are fucking NOISY! LOL.
Basically as soon as they put her on the CPAP, they started taking her off of it, and putting her on regular oxygen for little bits of time. So, within a week, Lily was actually on just a regular nasal canula.
This is a picture of her first time off the CPAP, and on regular oxygen. Quite a change.
Oh, and yeah, Lily hates nasal canulas. 
That is a before surgery pic, but it makes me laugh every time I look at it. Its actually from the day she was admitted.
Around the first of August, Lily was transferred down from the CICU to the regular cardiac unit, where the next step of our journey began.
See next post.
No comments:
Post a Comment