Today marks one year since Zadie was trached. A year ago yesterday, on the 4th of July, we were woken up by a call from the hospital. That's never good. But the call was a few days coming.
On June 30 of 2011, Zadie had a G tube surgically placed. Her eating hadn't progressed enough and the hospital wouldn't send her home with a nasogastric (NG) tube, the temporary one that goes through the nose to the stomach. They didn't want to keep her in the hospital just for eating issues, so it was decided that she'd get a G tube.
She went through the surgery just fine. It was scary for us to leave her with the surgeon and anesthesiologist, but it went quick. She was intubated for the surgery, meaning she had a tube inserted down her throat to help her breathe through the surgery. Since she had such a tricky airway (part of her condition, Pierre Robin Sequence, causes the airway to be funky), they were worried about intubating her, but didn't have trouble once she was under anesthesia. They extubated her (removed the breathing tube) the following day. She had always had trouble breathing in certain positions, but before the G tube surgery, if she was laying on her belly or her side, she was ok. She also had a nasopharnygeal (NP) tube, also known as a trumpet, inserted in her nose when she was about 10 days old. The purpose of that was to help keep her airway open more.
Now, after the G tube surgery, she was pretty miserable. Not breathing easily in any position, and her oxygen saturations were not great. The surgery was on Thursday, she was extubated on Friday, and by Sunday morning the 3rd, she was on oxygen. She was holding her own, though, and we kept being reassured that her airway was probably just swollen from the intubation. I kept asking if the intubation possibly damaged her airway, but the doctors kept saying it was just swollen.
So, on the morning of the 4th of July, we were woken up by a call from Dr. Ruben, Zadie's neonatologist. She said that Zadie's breathing had worsened to the point that they needed to intubate her again. They tried to do it while she was awake, but were unable to, so they had to put her under for it. Since we weren't there, we had to give our permission over the phone for her to go under anesthesia to be intubated. During that phone call, Dr. Ruben also told us that Zadie would need a tracheostomy as soon as possible. This was the first time we had heard that word in relation to Zadie!
When we went to see Zadie later on, she was already out of anesthesia and intubated. They had her little hands pinned down to the bed so that she couldn't pull the tube out. She was looking at me like she wanted me to help her. That was probably the hardest day of all the days in the NICU. It was the first time I was afraid that we were going to lose her. I was crying and trying to get the nerve to ask a question that was floating around in my head. I finally got the nerve and asked, "Is she going to be ok?" Her nurse just looked at the doctor, who said, "Her problems are all mechanical. She's not a sick baby. We just need to fix her mechanical problems." The fact that she didn't say, "Yes, she'll be fine" was not lost on me, but I did feel better having asked.
Since it was 4th of July, it was hard for even the doctors to get a hold of the surgeon. When they finally did, he said he could do the trach surgery on Wednesday, the 6th. Zadie's doctor wasn't satisfied with that. She insisted he do it the next day, on the 5th. The fact that she was so nervous and anxious to get the surgery done made me very anxious and nervous! The doctors in the NICU were used to little bitty preemies, not robust full termers who could easily pull out tubes. Zadie's doctor was very nervous that Zadie would pull out her tube and it would be so difficult for them to get it back in, that it might be a very bad situation.
So, on July 5, 2011, we walked our sweet little girl down to the OR for the second time in 5 days and she was put under anesthesia for the third time in 5 days. Again, the surgery went quick and she did well. When we got to see her, it was like seeing a different baby! She was laying on her back (previously had always been on her belly or side) and she just seemed happier and more comfortable than she had ever been in her 5 short weeks on earth.
When I think back to that time, I realize how little of a clue I had about what lay ahead. I understood what a trach was, I knew some people had them for awhile, but I could never have predicted what our life would turn out to be like. I hope that Zadie is able to lose the trach by her next trachiversary, but I'll be ok with it if she's not. It saved her life.