The weather in Buffalo and the surrounding area was brutal. We had received nearly a foot of snow overnight, and it was still snowing heavily! Driving 25 mph on the side streets of Buffalo to get to the hospital was torture. Wondering what could be wrong with Lily. Wondering how Tracy was doing. And probably the most consuming question: WHY??
Walking through the Hodge St. entrance of Children's Hospital, I couldn't get to the NICU (Neo Natal Intensive Care Unit) fast enough. Luckily, the elevator was fast. My sister Julie and my Sister in Law Cheryl had called ahead, so the secretary knew who we were when we arrived. She escorted me and Papa C. to the Dogwood Room (all of the NICU rooms are named after trees...Elm, Birtch, etc). Lily was in the back left corner and I almost forgot to wash and sanitize before going to her. She looked so small, laying in her bed. The tears were inevitable, but I knew I had to be strong for her. Her face was so cute and her eyes were closed. Her mouth curled into an impossible smile.
She had a suction catheter in her mouth. This is a tube that is inserted into her throat and suctions out the secretions so they can not flow into her Trachea, and to her lungs. She also had a nasal cannula (for oxygen), leads stuck to her chest to track her heart and breathing rate as well as her temperature. Not to mention the pulse ox monitor on her foot that tracks her Oxygen level. I rubbed her head and arms. Held her tiny hand and told her I loved her.
Before I could do anything else, I heard voices from the doorway and turned to see a man and two women coming toward me. They all had stethoscopes around their necks. My heart skipped a beat. Honestly, it skipped several beats.
They introduced themselves as Dr. Matthew, Dr. Perre, and Dr. Carmen. Dr. Matthew took the lead by asking if I was Lily's dad. I nodded, afraid to speak. He congratulated me on Lily's birth and continued with the bad news.
"Lily has a defect in her esophagus." Now I will paraphrase. Lily's esophagus did not grow properly while she was developing. The condition is called Esophageal Atresia. This means that her esophagus just ends, and does not reach her stomach. This is why she was choking on her secretions at Millard Fillmore. My mind was reeling. How can this ever be fixed?? How can she eat?? Is this fatal???? Dr. Perre continued:
Lily also has a defect called Tracheal Esophageal Fistula. This means that at one (possibly two) points, the esophagus and trachea are fused together. So essentially, anything that goes down the esophagus will spill over into the trachea and vice versa. Her secretions were going into her lungs.
This defect is usually accompanied by several other defects. Lily would have to undergo many more tests. The doctors said she may have something called Vater Syndrome (also known as the VACTERL association. It is an acronym for Vertabrae, Anus, Cardiac, Trachea, Esophagus, Renal, and Limbs. All of these areas of her body would have to be tested for defects.
This was going to be a long day.
11:30pm - 7:00pm
Debbie is Lily's nurse. She is super nice and did a very good job calming me down. She was excellent with Lily and explained everything to me when I had a confused look on my face. During this time, Lily had several X-Rays, a sonogram, and an EKG. I was a nervous wreck for each test, but Papa C. did a great job of consoling me and explaining the NICU procedures. He did have on the job training with Ayden.
While Lily was getting an X-Ray, Scott from the transport team asked me if I wanted to see Lily's X-Rays from Millard Fillmore. Hole-eeee-Crap! Her esophagus looked like it was only half an inch long. He told me that her vertebrae and bones look nice and strong, but the new X-Rays would have to be reviewed further to determine if the V and L from VACTERL could be crossed out.
My nerves were starting to get fried.
It helped when my big sister Julie came in with her family --lucky for me, she works for Children's and knows virtually everything about the NICU. She was there when the Nurse Practitioner, Dawn came in to do some more explaining. She had an amazing way of explaining things and went out of her way to ensure that I was comfortable with all of the tests. Unfortunately, she couldn't give me any results, but she was reassuring nonetheless.
Calling Tracy to explain the defects was one of the hardest things I ever had to do. In fact, Dawn offered to call for me, but I knew that I needed to do this myself. She was very strong and took everything in. I was so thankful that her mom and my parents stayed with her.
At about 4pm Debbie asked if I wanted to hold her. I was shocked. With the suction catheter and all the wires, I never even thought it would be an option for me to hold her. It took a minute to tuck all the wires and to swaddle her like a Lily-Taco. When Debbie placed her in my arms, my heart melted. What a joy. All I kept thinking was, "Please fix our Lily."
After a good hour, I decided to stop being selfish and asked Papa C. if he wanted to hold her. Debbie was at lunch so one of the other nurses completed the transfer. I could see how proud Papa was. Unfortunately, after a few minutes, Lily's secretions got the best of her. Her Oxygen levels decreased which led to an increased heart rate and respiration. The substitute nurse took Lily and put her back in her bed. After a few minutes of talking to Lily, she calmed down and recovered from the episode.
At about 6pm, Tracy showed up with her mother. Her first instinct was much like mine. She rubbed her head, held her hand and told her she loved her. Debbie came over almost immediately and asked Tracy if she wanted to hold Lily. Tracy broke down crying almost immediately because she was so happy. She only held Lily for a brief time at Millard Fillmore and I knew how much she was looking forward to her next opportunity to hold her. We sat together for the next hour and cried.
With Tracy being discharged early, we took her Dr.'s advice and went home to rest. Tomorrow would be a long day of more tests and waiting.
January 4, 2010 -- 8:30am - 12pm
After much discussion, Tracy and I agreed that it would be best for her to rest and come up to the hospital later in the afternoon. So I dropped Tracy off at her parent's house and Papa C. accompanied me to Children's. Andrea was Lily's overnight nurse, and we called her three times during the night so we knew Lily was resting comfortably.
When we got to the hosiptal, I was excited to see Lily awake and looking around. She looked beautiful in a pink knit cap and a matching blanket (made and donated by a wonderful volunteer).
All of her vital signs were good, but I knew it would be another tough day of testing for her.
Just before lunch, Lily was taken down to the 2nd floor to have a lower GI. The doctors were concerned that she didn't have a bowel movement yet. However, they did reassure me that it is natural for a newborn to wait a couple days before pushing out the merconium. Under the circumstances, with Lily on IV fluids, it would be even more probable that her first BM could be delayed. "So don't worry." ---- Yeah, right!!
Again, I was so happy to have my parents here along with Tracy's family. Never underestimate the power of a support group when going through something like this.
The first good news of the day. Lily came back from the lower GI and the nurse practitioner Dave told me that "unofficially" everything looked fine. There was good movement of the barium solution through her colon. And she also pooped for the first time during the procedure. Those poor doctors. Way to go, Lily!!!
After lunch I went back to Lily's room and she was getting another sonogram. I was a bit worried after they told me they were looking at her kidneys. After they left, I asked her day-nurse Peggy why they were doing another sonogram. She told me that when they sonogrammed her yesterday, they forgot to look at her kidneys. Of course, my first thought was, "they didn't forget....they are looking at them again because they found something." It also didn't help that as I walked in on the sonogram, the technician said to herself, "Nothing."
To me, it seemed like she was saying "There's nothing there" as opposed to "There's nothing wrong." I asked her if she could tell me the results, but she said she couldn't. It is up to the doctors to give me the results. All I kept thinking is that it is so hard to keep a positive attitude in the midst of all this worry.
God bless Dave the Nurse Practitioner. He came in to look in on Lily and I told him that I haven't heard any news on Lily's EKG. He asked me to hold on a second and he walked out of the room. A moment later he came back and said that he called Dr. Perroni, one of the best Cardiologists in the area.
A couple minutes later, Dr. Perroni came in. He was such an amazing gentleman, with a GREAT bedside manner! He listened to Lily's heart beat and then excused himself so he could review her EKG. When he came back, he told me that Lily had three heart defects. My eyes welled up and Dr. Perroni looked at me and said, "You may want to listen to what I have to tell you before you start doing that."
He drew a picture of Lily's heart for me.
Lily's first defect is called Patent Foramen Ovale (PFO). This is a small opening between the Left and Right Atrium that allows blood to flow from Left to Right. Dr. Perroni said, "20% of adults are living with this defect and experiencing no ill effects." He said a person could live to be 99 years old, and this would not affect them.
The second defect is called Muscular Ventricular Septal Defect (VSD). This is a small opening between the Left and Right Ventrical. All I heard was defect. My eyes teared again. Dr. Perroni says, "Listen to me Scott. The heart is a muscle. As it pumps, it grows just like any other muscle. Lily's heart will fix this defect on its own by the time she is 6 months old." Phew.
The third defect is called Peripheral Pulmonary Stenosis (PPS). This is a narrowing of the pulmonary artery that takes blood to the lungs. "It is perfectly normal in newborns," Dr. Perroni said. He also said that as Lily grows, the airway will grow and the problem will resolve itself.
Before he left, Dr. Perroni said, "See, your daughter has a beautiful heart!" Once again, I cried. This time, because I was so happy!
Dave told me that "unofficially" Lily's bones look good. Her vertebrae looks strong and her limbs are normal. I asked him if there was any news on the kidneys. No news, he said.
2:30pm - 5:30pm
Waiting. Waiting. Nerves. Stress. Tracy and I had many phone conversations. I was so relieved that she was resting at her parents house.
My heart almost stopped. I was sitting next to Lily, whispering in her ear and holding her hand and in walks Dr. Caty. He is the doctor I have heard so much about. The one everyone says will be able to fix Lily.
He introduces himself to me and to Lily (which was GREAT!). He re-told me what was wrong with Lily's Esophagus and Trachea. He explained the VACTERL association again. Then a huge wave of relief flowed through me when he said the only concern is her Esophagus and Trachea. All of the other letters in this horrible acronym are of no concern.
Unbelievably, he explained how he was going to fix Lily's problem. He referred to it as "nothing more than a problem with Lily's plumbing." He also drew another picture (I don't have the original of this one, so this will have to do):
He told me that first he would fix Lily's Fistula (the bridge that is connecting her Esophagus to her Trachea). He would go through Lily's mouth and throat to fix this using a scope and a camera. That takes about 10 minutes. Next, Lily would be rolled on her side and an incision would be made just below her ribs on the right side. He will move the lung out of the way and proceed by detaching the Esophagus from the Trachea (above, it is the section labeled "Esophagus Continues"). He would then re-attach that to the pouch above (labelled "Esophagus Ends").
I asked Dr. Caty when he would operate on Lily.
Tomorrow! Between 1:00m and 2:00pm.
I cried. OK, so there was a lot of fear in this cry, but there was also happiness. Even though Lily is only 2 days old, it feels like I have been standing over her for months. All I could think was, "Someone is finally going to fix Lily."
Dr. Caty was reassuring. "It sounds complicated and invasive," he said, "but it is actually quite routine." He said he has completed this procedure over 100 times with a 100% success rate. Wow.
I asked Dr. Caty if he would be here at around 7pm so he could explain to Tracy what he is going to do to fix Lily. He said he wasn't, "but let's get her on the phone now."
Tracy and I talked to Dr. Caty via conference call for another 20 minutes. He is an extraordinary man with an amazing bedside manner. His explanation of Lily's surgery was clear and made both of us feel so comfortable and safe. It was easy to trust him with Lily's care. He assured us that even though this is a teaching hospital, he would be completing this surgery personally.
Before he left, I warned Dr. Caty that when Lily goes home, he can expect a giant bear hug for me.
The countdown has begun.
January 5th, 2010
Tracy and I barely slept. We called the nurse (Andrea) three times overnight to check on Lily. We had a long day ahead and the plan was the same. I would drop Tracy off at her parents to relax and Papa C. and I would go to the hospital to be with Lily. Tracy is still only two days from giving birth and receiving MANY stitches. I am glad she wasn't being her usual stubborn self.
Lily was sleeping peaceful when we arrived. The total opposite of what was going on inside of me. I know Dr. Caty said this was a routine procedure, but come on! Really . . . just think about an incomplete esophagus that needs to be disconnected from the Trachea and reconnected to an Esophagus that stopped developing. Does that really sound routine!? I was a huge wreck!!
Luckily, the day nurse was a wonderful woman named Lynn. I knew right away that she would do her best to make this easy for us. Her personality was perfect for a stressful situation. A tablespoon of serious and three cups of wise ass. We got along great and I barely thought of the surgery as we joked around about anything and everything.
I think our laughing made Lily feel good. She woke up a few times to look around and barely made a whimper. In fact, in 3 days, I had only heard her cry twice, and one of those times was when she came out!
Lynn said she was finished with her morning routine, and now it was okay for me to hold Lily. I treasured the moment. As it was explained to me, Lily would have a ventilator (breathing machine) and a chest tube when she comes out of surgery. I had no idea when I would be able to hold her again.
She was wide eyed and staring at me as I held her. What an amazing little girl. I kept whispering to her how strong she is. Such a brave girl. Amazingly, to look at her, you would never know she had any problems (of course, aside from all the wires and tubes!).
Yay! Tracy is here. Around the same time, everyone else arrives too. Both of our families have come to support us through this nerve-wracking day . . . Again, there are many things in life to be thankful for. A strong family is always near the top!
Lynn lets Tracy hold Lily. Tell me this isn't beautiful!!
I asked Lynn if when Lily would be picked up. She told me about 1:30. So me, Papa and Gramma C, and Jeremy went to get some sandwiches to bring upstairs. I knew I wouldn't be able to leave the floor during the surgery. We were down there for maybe 10 minutes and I saw Lynn running into the cafateria. "Tracy is looking for you. They are picking up Lily right now." I was freaking out. I didn't know which way to go? Up, down, left, right??
We got on the elevator and I was shaking. My legs felt like they were going to buckle. The door wouldn't close. My hands were sweating.
Finally the door closed and we made our way to the third floor. I got off the elevator and nearly ran toward the NICU. Just before I got to the double doors, I heard "SCOTT!!" from behind me. I turned around and the respiratory nurse, and another nurse were on the patient elevator with Tracy and Lily. Oh man. This is it. I squeezed onto the elevator and held Tracy's hand. We were both shaking.
12:45pm - 1:21pm
It's a blur. We stood in a brightly lit hallway, watching other patients get wheeled past. Doctors in scrubs walked past. Nearly all of them looked at Lily and smiled. She's that beautiful!
We met the anesthesiologist and he looked a lot like Al Pacino. I just hoped he was excellent at his job as Al Pacino is an actor.
At 1:21pm, Dr. Caty walked up to us and asked if we had any more questions. Tracy said, "I just know you're going to fix my Lily." We walked back to the elevator, arm in arm and sobbing.
1:22pm - 2:30pm
waiting waiting waiting and clock watching
The respiratory nurse came into the waiting room and started with, "Everything is ok, but...." and my heart skipped a beat. I looked around for Tracy, but remembered that we had secured a small family room for her so she could rest during the surgery. The nurse must have seen my panic, because she reassured me immediately. "It's ok, " she said. "I just wanted to let you know that there was a delay. They just rolled Lily into the OR a few minutes ago."
So I wasn't really waiting from 1:21 - 2:30 . . . I was merely waiting to wait!!
2:31pm - 5:00pm
More Waiting. I couldn't stay in the waiting room. Yes, both families were there for support, but I was going crazy. I paced the hall. Went into Tracy's room. Paced the hall again. Went to the Chapel. Paced the hall downstairs. Went back upstairs and paced the hall again. Then finally made my way back to the waiting room.
The lightest part in the waiting was when Tracy came back from her room and showed everyone that her lower lip had swelled. It looked like she was in a girl fight and got slapped repeatedly by someone tougher than her! We all got a great laugh out of it.
I was in the hallway at 5pm when I saw Dr. Caty come in through the double doors into the NICU. I rushed to the waiting room and called Tracy. Dr. Caty had a smile on his face and we knew that everything was OK.
Dr. Caty had fixed our Lily!!
He took about 10 minutes to explain the procedure he completed. Again, he told us that it was routine and that everything went well. He said that recovery will be boring, so Mom and Dad should go home soon and get some rest. But we just needed to see our baby!
We still had to wait a little bit for Lily to be rolled back to the NICU from recovery and get set up in her room. When she was wheeled past, it was like a parade. All family members on both sides of the hall, just waiting to catch a glimpse of the little hero, Lily.
When she came, there was not a dry eye on the floor. Everyone hugged eachother. It was like New Years Eve all over again, only with tears and pats on the back instead of booze. She had a blanket over her, but I could see part of her face and she looked so nice and pink. I know, some of you know that I'm color blind. So I heard people saying she was nice and pink. Either way, she looked beautiful to me!!
We couldn't wait to go to her room to see her.
We finally got to see Lily.As you can see, it was a bit distressful at first, but we were prepared. We knew she would come out with a Vent Tube down her throat. Since the Anesthesia is so much for a baby, it was necessary to have a Ventilator to help her breathe. The doctors said that they will try to take the Vent tube out tomorrow afternoon after the anesthesia wears off. But don't be surprised if she has trouble breathing and it has to be put back in for a little while. Oh Great!!
The tube in her nose is called a Replogle. Notice how it is taped to make her look like a hockey goalie? The nurses got a big laugh out of the tape job. They were all calling the surgeons amateurs. Ha!
Well, the Replogle serves a dual purpose for Lily. It goes ALL the way down her repaired esophagus and into her stomach. First, it suctions secretions and the surgical waste and blood out of her stomach. Second, it serves as a stint to keep her repaired esophagus straight and rigid, as well as keeping the passage open during healing. You can still see how pretty she is behind the tape and tubes!
We took Dr. Caty's advice and left Lily at about 7:30 in an effort to get a good night sleep.
January 6th, 2010
Today it was just me and Lily. I dropped Tracy at her parents and they were going to come up later. When I walked into Lily's room, her nurse was standing over her. I said Hi to Lily and then introduced myself to her day nurse. Her name was Rose. I thought it was cute. Lily and Rose. Two flowers! What a great pair.
I looked in closer at Lily and noticed there was a Teddy Bear in front of her face. Rose said from behind me, "Do you notice anything different about Miss Lily?" I looked closer and noticed that the Teddy Bear was up against her mouth, holding in a binky (I guess this is an old nurse's trick).
Then it hit me. Binky. In her mouth!!! "Her Vent tube is out!" I almost yelled it and my voice broke. Rose started laughing. "Your daughter is a little brat! She decided she didn't want the Vent tube in anymore!"
Holy Crap! She yanked her Vent tube out herself! Little toughy was breathing against the machine just fine and said to herself, "Who needs this!!??"
That's my girl!
We chilled for a bit and it was so cute. She was making little squeaky sounds. She sounded like a little dinosaur. She wasn't in pain. She was just kind of letting out a little "See Daddy!??"
I told her for about an hour how proud I am of her.
Tracy came up and we were hanging out with Lily. I was pleased when Dr. Caty came in with two other doctors to check in on Lily. "Pretty boring, isn't it?" he said. "That's just what we want." He even threw in another joke commenting on how quiet she has been and how it will be a completely different story when Lily goes home.
It took everything in me not to tackle him and hug him for the rest of the day.
He explained to us a little bit of the recovery process. He said the Replogle will be in for a week to 10 days. He said we need to make sure the surgical site heals completely. When the Replogle comes out, they will do a Barium test to make sure there are no leaks in her Esophagus. If there are no leaks, Lily will get a NG tube (feeding tube) down her nose and she can start being fed with formula. If that goes well, then soon after we can start to bottle feed her.
What a great day!
Again, it was a great day. Lily was SOOOOO good and SOOOOO strong. Yes, she was on pain medication (Fentonol) and did whimper a few times (instead of a dinosaur, she sounded like a frog). But it was a wonderful day of healing and moving forward. Every day of recovery is one more day closer to bringing her home.
We just can't wait!