January 27th, 2010 --- D-DAY!!!!

We didn't know it until we got to the hospital, but today is the day we find out if Lily's 2nd surgery was a success. All week, we were told Thursday would be the day of her fluoroscopy to look for leaks at the 2nd surgical sight. Our morning nurse, Alicia, said that Radiology called and they would take Lily down this afternoon.

So again, it is a waiting game again. Of course, Tracy and I are nervous. The last time Lily had this test, the Proximal Fistula was found moving Lily from 1 in 2,500 to 1 in 60,000. A third Fistula is currently undocumented, so it would truly make Lily one of a kind. (She already is that to us, so our vote is for NO MORE FISTULAS!!)

It is kind of a bittersweet day. Tracy and I have become friendly with another family in the NICU. Their daughter Janelle was recently moved into our room, so we have managed to become closer through lengthy conversations about our daughter's conditions. It has become easy to share in the emotions after seeing what each baby girl has had to go through, whether it is a step forward or a step back. Even though Lily had her test to go through today, their baby girl was also having a procedure. They were so nervous (just like we were last week for Lily's surgery). So Tracy and I were actually stressing ourselves out over both of these strong little girls. Big days for both of them!

More waiting. Tracy and I were able to hold Lily while we waited for radiology to call. Lily was a sweetheart, sleeping most of the time. She just loves to be held after so long. She would wake up here and there, look at us with her big eyes and tell us in her own way not to worry.

The call from Radiology came at about 1:45pm. They want Lily down there by 2pm. Alicia packed her up and rolled her off.

We wait again. Nerves starting to act up again. We were trying not to think about the last test Lily had. Positive thoughts. She's been doing so good, we shouldn't expect anything other than good news, right!?

At about 2:40pm, I saw Alicia walk by the waiting room with Lily . . . Tracy and I ran out to the hallway. "Everything looks good!" Alicia said, "but Dr. Caty will have to review it first, so it's not official."

Phew....Big weight.

As we were walking back to Lily's room, we ran into one of the other doctors. She said the same thing Alicia said. But we are not going to know for sure until we hear from Dr. Caty.

We would wait as long as we have to for Dr. Caty. He was in with Janelle for her procedure and we wanted him to spend as much time with her as he needed to!

5:30pm

Janelle is rolled back into the room and Dr. Caty follows in soon after. He comes right to our corner of the room and confirms that Lily's passed the test with flying colors. In other words, LILY IS FIXED!!!! There are no more holes, no leaks, her surgical sight looks great! The Chest Tube can be taken out tomorrow! What a relief, she will feel so much better!! Lily is a mild mannered baby to begin with, it will be hard to imagine how much quieter she may be without the Chest Tube sticking uncomfortably halfway through her abdomen...He also said they will continue to feed her through her replogle. They need to get her feeds up to the norm for a baby her age (which is about 3 ounces every three hours). However, they don't want to increase it to an ounce per hour right off the jump. It needs to be increased gradually. Hopefully, she will be up to an ounce per hour by Saturday. THEN we can try to feed her....(SO!!!! don't be surprised if there is not an update until Saturday or Sunday!!)

Lastly, everyone who reads this, please add Janelle to your prayers. It seems her procedure went as expected, but she has a very long and difficult road ahead of her. She and her parents are very strong, but extra prayers will certainly help, and maybe can give them a shortcut here and there.

Thanks!

January 23rd - January 26th, 2010

Okay, okay . . . Like I said before, recovery is boring. Well, a good recovery is boring. Lily seems to be having a GREAT recovery. Therefore, not much to blog about.

But since Aunt Teri yelled at us, I will try.


Lily sleeps most of the time. That is the goal of a nice recovery. We like her to sleep so she isn't moving around so much. On her 3rd, 4th, and 5th days of recovery, Lily did have a few outbreaks of inconsolable crying. She would scream her head off for an hour or so, which is nice practice for when we get her home and she gets upset. There were two times that she required a dose of her sedation medicine, Versed, to get through the outburst. Tracy and I are convinced that she would have calmed down if we were just able to hold her. Unfortunately, surgery still would not let us hold her at that point. We were stuck with gentle whispers in her ear and tapping her chest to help soothe her.




On the 26th, the doctors wrote the order to have her Nasal Cannula discontinued. They said her lung has recovered fully from the surgery and there is no need for the constant flow of air into her nose. This also seemed to improve her mood. For anyone that has seen a Nasal Cannula, it doesn't look like the most comfortable thing. Hard plastic tubes stuck in her nose, and chances are it was irritating enough to cause a fit or two.


Also on the 26th, Dr. Caty came to check on Lily. He said that we can hold Lily again. Tracy was resting at her parents house on my request (chickie needs her rest!!!) so I was lucky enough to be the first to hold her for a few minutes. It was awesome. Lily didn't make a peep the whole time. I got lost in her unnaturally huge and beautiful eyes. What a doll.

Now, the Contrast Study is scheduled for Thursday the 28th. The radiologist will send some dye down her esophagus to check for any leaks at either surgical site. Like Dr. Caty said, a third fistula would be unheard of. He told us that some doctors go their whole career without seeing two fistulas. So be a good girl, Lily and stick with two!!

That's the extent of it. We will update some more after the Contrast study. In the meantime, here are some pictures from the last few days so you can get your Lily fix. . .

January 22nd, 2010 -- Day 2 Post-Op

Morning

We arrive at the hospital at 8am to a nice surprise. Another baby that we have heard so much about from her parents has been moved into Lily's room. Her name is Janelle and Tracy and I enjoy our conversations with her parents very much.

When Dr. Satyan comes by for rounds, he notes that Lily is breathing deeply and he hears her whine that sounds like a little dinosaur. He listens to her chest sounds using his stethoscope and orders a chest X-Ray. He says she's "pulling" a little bit when she breathes. Her saturation levels are great, but it is possible that her lung still has not inflated all the way since the surgery. Don't forget, when the surgeons opened her chest, her lung deflated (this is normal).

When the X-Ray comes back, Dr. Satyan confirms that she is still a little light in her right lung. He recommends a nasal cannula with a flow of oxygen to help strengthen it. As Tracy and I have said many times in these past weeks, "Whatever she needs!"

Dr. Walker and Dr. Sonny also visit Lily. They confirm that Lily can begin feeding today. Sweet!! A day early!! She will get 1cc of formula every hour (30 cc's equals 1 ounce). It will be slow going, but it's a start. If everything goes like last time, she will be up to 3 or 4 cc's by Sunday. This is great news and will go a long way towards getting her ready for bottle feeding (hopefully next week!).

Lily is awake most of the morning. A whine here and there, but otherwise a happy baby. She stares at us with her big bright eyes and we just love it. After a little while Lily started to become a little fussy. It seemed no matter how we tried to soothe her she just would not settle. I asked if Lily was still able to have the Versed to calm her. The order was written by Dr Satyan to give her the Versed if needed and at this time Lily needed it. Her nurse Donna went to get the meds. It took only minutes for Lily to head off to dreamland. Scott and I both agree that sleep is the best recovery for Lily. I know having her awake and staring into her beautiful eyes is what I rather do, but seeing Lily in any discomfort is just heart wrenching.

Afternoon

Around 2pm Donna hooked up Lily's feed and started the 1 cc an hour. Yay !!! Lily just continued to sleep s0 peacefully. Daddy left around 2:45pm to go hang with Grace. Again a much needed date with Dad. They were going to hang out while Papa C and Mommy stayed with Lily. Then Grace was going to sleep at Papa and Gramma C's house. Grace was psyched.
Lily had a great restful day. She woke up around 4:30pm.

Evening

Donna went to flush the IV in Lily's head and she said that it was time to come out. Yay !!! I called the IV her barrett. Lily was so angry to have the IV removed she cried so hard. It was awful to watch but I kept telling her that she was OK and we didn't want that IV anymore. The IV was taped to her head so Donna was so careful not to pull Lily's hair out. As sad as this sounds but Lily needed to have that cry, because it opened her airway and helped inflate her right lung. Her breathing and saturation levels were now great!!!! Once Donna removed the IV Lily was happy again.

Lily had a great night! She was so calm and looking around at everything. Papa and Gramma C sang to her, Papa said prayers with Lily. About 8:30pm Daddy came back to the hospital, Papa and Gramma had just left and I wasn't ready to leave yet. Lily was still awake. I really don't like leaving the hospital when Lily is awake. I much rather her be off in dreamland sleeping. Once Scott got there he told Lily that Daddy was there and he put his hands on her head and she fell a sleep very quickly. Lily needed Daddy's touch. We stayed until about 9:30pm. Lily was definitely off in dreamland.

January 21, 2010 -- Day 1 Post-Op

Morning

We arrived at the hospital today just in time for rounds. Lily was doing fine, sleeping peacefully as the doctors and nurses discussed her. Dr. Satyan said that everything looked well enough to take out her Vent Tube. "Right now??" Tracy asked? "Right Now!" Dr. Satyan said.

Of course, we didn't want to be in the room as they do this. Lily will gag and cry and strangely enough, it's a lot to see. When we returned to her bedside from the waiting room, the doctors and nurses were still hovering over Lily. Dr. Jayasree came up to us and told us that they were having trouble taking the Vent Tube out. They were able to get the tube half way out, but then there was some resistance. Rather than force the tube out, Dr. Satyan pushed the tube back in.

Of course, after all we have been through so far, we got a little nervous. Dr. Jayasree told us that everything will be ok. "Is this normal?" Tracy asked. "No," she said, "but there may be some swelling or it may be getting caught up on the Replogle tube."

So in comes the X-Ray machine. They pulled the Vent Tube half way out again and shot some X-Rays of Lily (the kid has had more X-Rays than Carter has liver pills!)

Of course, now....We wait!!

About a half hour later, Dr. Caty comes walking in, classic smile on his face. "What is Lily up to?" he asks. "She keeps throwing us curve balls!" He tells us he reviewed the X-Rays and it looks like there's no problems. He said that the procedure more than likely caused a little trauma to her trachea which caused Edema (or swelling). He said when the Vent Tube comes out, they can put her under a mist tent, and that will reduce the swelling. "Let's get this tube out of her!" he says.

Tracy and I walk out again. This time, we stay by the door and watch them huddle over Lily. We jokingly wonder who is taking care of all of the other babies on the floor since there's about 9 doctors and 10 nurses crowded around Lily's bed. We see a lot of smiles and laughing, so we know everything is ok. Our thoughts are confirmed when Dr. Jayasree turns to us and gives us the thumbs up. We go back into the room and our beautiful Lily has the least tape she has ever had on her face. She looks so wonderful!! She de-saturated a little bit (down to 88 ---remember, 85 startes to raise concerns). But about 10 seconds and two or three big breaths later, she bolts up to 98 and stays there. Another hurdle cleared!!

As promised, Respritory comes in and puts a Mist Tent over her head. This will help her with the swelling. It looks like she is getting her own personal little spa treatment. I told Tracy she should paint Lily's toenails to complete the picture!

Evening

Lily is quiet for the most part. She is on rounds of Fentonol that keep the pain at bay. Even still, she sometimes opens her eyes and looks around the room. She'll catch our eyes and stare at us for a while as if to say, "This ain't so bad, Mommy . . . See what a big girl I am, Daddy?"

Once in a while she will stretch and make a little sound that is reminscent of a tiny dinosaur from Jurassic Park. It's cute in its own right, but we know it is a whine of pain and it is heart breaking. But Lily is our big strong girl and she is a hero to us! We just know she will conquer this and be home within a few weeks. Then no one can hold us back from spoiling her and holding her and waking her up from a deep sleep just to tell her we love her.

Goodnight, Boo Boo Baby!!

January 20th, 2010 -- Surgery #2

Morning


Another big day for Lily. Surgery is scheduled for 9:30am. Tracy and I arrive at the hospital at about 7:30. Lynn is Lily's nurse again. It is almost as if it's planned! Lynn has been Lily's nurse for all of the big days --Surgery #1, contrast study, and now surgery #2.


The plan that Dr. Caty discussed was that he would first perform a Bronchoscopy, which is to send a small camera down Lily's throat and look for another fistula. He said that it would be extremely rare for Lily to have another fistula so he is not convinced there will be anything there. However, if he does find anything, he will come out to the waiting room to explain it to us, and then he will complete the surgery to repair it.


We are all nerves. It is a big day and we are eager to have this behind us. Unfortunately, we just have to wait. Little Lily is the one who has to go through the procedure. I am lucky enough to hold her for about 30 minutes before the surgeons call Lynn to say they are ready for Lily (Thank you Tracy!!!). I hold her close and whisper prayers with her until Lynn takes her from me.


9:45am

Tracy and I are in the hallway with Lily and Lynn waiting for the surgeons to wheel Lily to the operating room. Much like her first surgery, Dr. Caty comes out to greet us. He shakes both of our hands and gives us a warm smile. There is just something so wonderful about this man. Just a look and you know that everything will be just fine. We have a short conversation and he introduces us to the anesthesiologist. Ugh, these are the guys that make me nervous!! He seems like a good guy though, very friendly. As we say our goodbyes, Dr. Caty says he will see us in about an hour with the results of the Bronchoscopy.


10:30am


I am pacing the hallway outside the waiting room when Dr. Caty comes out of the operating room. I call Tracy and she runs out to meet with us. Again, Dr. Caty's smile comforts us. He held up a piece of photo-paper with 4 pictures of the inside of Lily's Trachea on it. He points at the first picture and shows us where Lily's first surgical site is. "As you can see," he says, "it's healed nicely and there are no problems there." He shows us the second picture and says that it is a picture of an area just above the original surgical site. There is a small area that he refers to as a "dimple." He said that Lily had multiple "dimples" inside her airway. "They look completely normal and when we put the scope in, we do not see any evidence of another fistula."

He continues to explain that they used air pressure to force air into each of the dimples in Lily's airway. He shows us the third and fourth picture. They look identical to the second picture of the dimple, except these have a large hole right in the middle of the dimple. "This is what happens when we shoot some pressurized air into one of the dimples above the surgical site." It looked huge in the photo, but he said in reality is is only about the size of a pencil tip. So he took a small tube of polyurethane and put it into the hole. This will help him find the hole since he has to access the area through Lily's original surgical site. Then he will stitch the hole closed. "This procedure will be much easier than the first surgery," he said. "I'll see you in about an hour."

Did I mention that was at 10:30am???


12:30pm

Nervous Nervous Nervous. Dr. Caty said an hour. It's been two. Tracy and I are freaking out. Our families don't look that calm either. What can be taking so long!!?

After discussing it with Tracy, we decide that I will go back down to surgery to see if anyone has an update. When I get there, the place is empty! Well, there is one couple in the waiting area, but I doubt they will be any help. I am pacing the hall aimlessly hoping for someone to walk by. Anyone.

Finally, I see one of the Attending doctors walk by. I stop him and ask if he has heard anything. He kinda looks at me confused. He said, "I was just in there about a half hour ago and everything looked fine. Do you want me to check again?" ummmmmm.....YES!


Five minutes pass and I am going nuts. Finally, he comes out along with Dr. Pierre. "Everything's fine," he said. "You know how doctors are!!"


1:00pm


The nerves aren't as bad but I am still wondering how one hour has turned into nearly three!? I am sure everyone else is wondering the same thing.


Tracy and I are wandering the hall, into the waiting room, back to the hall. Luckily our families are there for support and to waste time with. It really helps!


1:25pm


Dr. Caty arrives smiling. I am not ashamed to say I Love that smile!! PHEW!!! Everything went fine, he said. It took a little longer because "anytime you re-enter a surgical site, you want to be very careful and methodical." He explained how he stitched the fistula closed and just to make extra sure, he completed a water test that I still don't completely understand. From what I could gather, they filled Lily's stomach with water. Then the anesthesiologist manipulated the vent to have Lily breathe two good breaths. The point was to see if there were any bubbles of water coming out of the surgical site. All was good!


2:30pm


Lily is wheeled back to the NICU. It;s another Lily parade!!


She came back the same way she did last time. Ventilator, Chest Tube, and Replogle (nose tube that extends to her stomach and keeps the surgical site steady). The recovery will be almost identical to her first surgery, however, they may start feeding her as early as Saturday (not bottle yet, but through her Replogle).


Lily is a lot puffier this time though. She did get a blood transfusion and was filled through her IV with LOTS of fluid to keep her hydrated during the surgery. Tracy and I joked that she just got out of the ring with Rocky Balboa. Lynn said it looked like she got hit by a truck.


Either way, it's not especially pretty. However, this is part of Lily's story, so pictures are inevitable. Tracy and I are not only keeping this blog to keep our friends and family informed. We are also using it to hopefully help other families like us. We came into this blind, not knowing what to expect. Hopefully, other parents of children with TEF will find this and use it to help them through their ordeal.


Besides, Lily is beautiful no matter how many punches it looks like she took!!

January 17th - 19th, 2010

I know I know . . . bad blog updaters!!!

Tracy and I are sorry that we haven't updated this as frequently as we did for the previous two weeks, but looking into Lily's eyes is hypnotizing! We get lost in there and just can't tear ourselves away from her bedside! And updating when we get home is impossible since we are so tired, we crash almost as soon as we get in the door.

That being said, no updates is actually a good thing. Remember what Dr. Caty told us about recovery? Surgeons want a boring recovery! Boring recoveries are good. No updates are good! So if you think of it that way, all should be forgiven.


Nevertheless, I know some people are eagerly awaiting updates. In a nutshell, here are the last few days . . .


Holding Lily



Kissing Lily


Eating Lunch


Family support and visits


Holding Lily


Singing to Lily (well....Tracy sang...I can't sing and would like Lily's hearing to remain intact)


Kissing Lily


Eating dinner


You get the idea, right? Oh, we also waited for Dr. Caty to give us a time for Lily's surgery....He did give us a time. It would be at 9:30am on Wednesday morning (January 20th).

That's pretty much it for the last few days. Maybe I can better illustrate it with pictures:

Now. To prepare for surgery!!

January 16th, 2010

Morning

Scott and I decided to go up to visit Lily around noon, so we could spend a little extra time with Gracie. Papa and Gramma C went to visit Lily at 10:00am. Gramma said that it was great to sing to her and read her stories. Papa said prayers with Lily. They both said that they had a great morning with our beautiful baby girl, she was awake looking around at both of them.

12:30pm

Scott and I arrived. Dr Glick (pediatric surgeon) was at Lily's bedside when I walked in. I introduced myself to him and he said that they are going to start feeding Lily today. He wrote the orders. He also said that he was here all weekend if I had any questions feel free to just ask.
Lynn told me that during rounds earlier, Dr Satyan DC'd (discontinued) all Lily's antibiotics. No infection, white blood cell count decreased, nothing going in cultures. So this is great news!!!
Lynn asked if I wanted to hold Lily. Papa and Gramma also were asked, but we wanted to wait for Scott to hold her next. He wanted to so bad. Selfishly, when I was asked, I wanted to say yes, but it was Scott's turn. So Lily was put into her Daddy's arms and quickly snuggled in and was so calm and looking around. She definitely LOVES to be held. We don't mind either. Scott held Lily for about 1 hour. Lynn asked who was next. They were gonna start feeding Lily at 2pm.

2:00pm

So Papa finally got to hold Lily. He couldn't wait any longer. It was so nice to see him with his "pecan pie". Papa has named all his grandchildren after his favorite pies. Ayden - apple pie, Ava - pumpkin pie, Gracie - chocolate pie and now Lily is pecan pie. So cute !!! Lily fell asleep in Papa's arms. We say that Papa turns on his furnace gets the babies so warm and cozy that they fall asleep.
Then Gramma had her turn. Gramma sang her famous "Gramma loves Lily song, Farmer in the Dell, Row, Row Row your boat, and Lily just laid there in her arms calm looking around loving every minute of her time with Gramma. By this time Lily had 3cc's of formula. Lynn said that after 6pm she will check to see what Lily has in her belly by measuring her aspirates.

5:00pm

Papa and Gramma bought Scott and I dinner from Casa Di Pizza, We had pizza and an antipasto and it was delicious. Thanks Again!!! Daddy created a video with pictures of Lily to the song "I could not ask for more" It is amazing. That song could not be more perfect.
Lynn checked Lily and she had received 4cc's of formula by this time and only had 2 cc's in her belly. So that means that 2 cc's are starting to be digested. That is great news!!!
Gramma and I went back to Lily's bedside after dinner and it was Mommy's turn to hold Lily. YAY!!!!
Surprisingly Lily was still awake and I was so excited to hold her. I said that Lily was waiting patiently for Mommy. Lynn gave her to me and again I got teary eyed. I LOVE holding Lily. I could do it all day long. I love looking into her big eyes and sit there wondering what she is actually thinking. Hoping that she loves me holding her as much as I do. Lynn said that I cant spoil her, and I said but its just so easy to do. So Gramma, Lily and I hung out for a awhile. It was great! I held her for a couple hours and by this time Gramma and Papa were leaving. Daddy's turn to hold Lily so Lynn helped us. Lily started to doze off. It is so great to watch Scott with Lily. I love it!!! He is such a GREAT Daddy!!!!
Tanya, Lily's night nurse came in. We like her too !!! But as I said before we have been so fortunate to have all really great nurses. We had Tanya help put Lily back into her bed so she could settle and go to sleep. Once Lily laid in her bed swaddled, (we call it a Lily taco) she went right to sleep. Our little peanut, is just so beautiful. Scott and I left so she could get a good nights sleep. I told Tanya I'd talk to her before I went to bed and we left around 8pm.

January 15th, 2010

Morning

We arrived at 8:30am hoping to get to speak to Dr. Caty first thing in the morning, before his busy day began. Lily's nurse was Kelly again. We really like her too. All Lily's nurses have been GREAT!!! We have been very lucky. The doctors came in for rounds and told us that Dr. Caty would still be up to talk to us, his schedule was busy but he would definitely be up today to discuss the plan for Lily. They also advised that her white blood cell count was decreased and that the reason it could have elevated was the stress of the study. The blood cultures they drew the day before are not growing anything so that is a definite good sign. Dr Satyan (neonatologist) drew us a picture to explain white and red blood cells.

10:30am

Papa and Gramma M came to visit Lily. Lily was fussy. Daddy was rubbing Lily's back why Kelly (Lily's nurse) was holding her binky in her mouth. It took Lily about 20 mins. to calm and settle down. Papa C and Aunt Angie also came to visit Lily and brought Mommy lunch. Thanks for the delicious wrap Ang!!

Afternoon

Scott left at 12:30pm. He picked Gracie up from school early and they went on a Dad/Daughter date. They went to Mighty Taco for lunch and to see Avatar in 3D at the Imax. It was a much needed date for both Scott and Gracie. We have not seen Gracie since 1/1/10. We have never gone this long without seeing Gracie and we missed her so much.

5:30pm

Dr. Caty came to talk to us about Lily's contrast study. He said that 1st off her surgical sight is just perfect. What was determined on the study as a possible leak he is convinced is not a leak. He also said that he is not sure that it is another fistula either. If it is a fistula, it is a proximal fistula. It is very rare that children are born with both a proximal and distal fistulas. He said that next Wednesday he wants to perform a bronoscopy on Lily to determine if there is even an issue. He said that he will scope her and this time he will need to go higher than the surgical sight. If there is a fistula he will repair right then and there. The procedure should take about 1 hr. Dr. Caty also said that Lily can start feeding. She will be fed through her replogle on continuous feed getting 1cc an hour. This will be a very slow process to ensure that Lily's digestive system can handle the feeds. All are started this way. Kelly asked if Lily can be cleared to lay on her belly and he said sure. So Kelly immediately crossed out that Lily needs to remain supine on her bed. Then Dr. Caty asked me if I have ever held Lily. I told him for a couple hours before her surgery. He looked at me and said you can hold her now she is pretty healed from the 1st surgery. This is what I have longed to hear. I immediately became emotional with tears running down my face. I thanked him. He said she needs to be held. I thanked him again. He said that he would be in touch with Scott and I to discuss times for the bronc on Wednesday.
Kelly told us to go to dinner and to be back by 6:45pm and she would have Lily ready for Mommy to hold her. I called Scott to tell him what Dr. Caty had said. Papa C, Gramma C, Aunt Kathy and I went to dinner.

7:00pm

I could not get back to Lily's bed side fast enough. Once I got there Lily was ready for Mommy to hold her. Once Kelly put Lily in my arms I cried!!! It felt soooooooo good to hold her again. Lily just slept. I kept telling her how happy Mommy was. The radio was on and the song "I could not ask for more" by Edwin McCain played. This could not have been a more appropriate song for that specific moment. I cried as I sang the song to Lily. Gramma C was also very emotional over the song. Scott was picking me up at 8pm so I held Lily til 8pm then got her snuggled into her bed. I told her how happy I am to be her Mommy and that we would hold her all day tomorrow. She needed her rest since feeding was starting tomorrow.

January 14th, 2010

Morning

Another day of waiting.

Yesterday we were told that Dr. Caty would review Lily's X-Rays and Fluoroscope today and he would meet with us to discuss a plan.

We arrived today at 8am just in case the doctor was in early. Lily was up and wide eyed. That's always a great way to start the day! Another great way to start was that her night nurse, Andrea, made another sign for Lily with her footprints and name on it. It's so cute!

9:00am

Lily fell asleep. She looks so peaceful. She hasn't had any fentonol or Versed in over 24 hours. That's our strong girl!!!

12:00pm

Lily is still sleeping. She is out cold. It's nice though, since she needs her rest for another potential big day coming up. We are still waiting for Dr. Caty. Every time the door to Lily's room opens up, Tracy and I whirl in our chairs to see if it's the surgical team. No luck yet. We decide to go to lunch.

3:00pm

Lily is awake. She is starting to get really antsy. We give her the pacifier, but she doesn't want it once she realizes there's no milk coming out. She's starting to cry. Shaking her head back and I love her cry because believe it or not, she doesn't do it often...but it is heart breaking that she is so hungry and there's nothing that we can do. The nurse gives her a quick dose of Versed. It takes a little while, but Lily falls asleep. It's so easy to just sit and stare at her for the next hour.

5:30pm

Papa C. and Gramma C. are here with dinner (Thank you!!!). Lily is still sleeping. Dr. Caty still hasn't come in.

Time to eat.

7:00pm

Dinner was delicious !!!! We had BBQ ribs and potato salad. YUM!!!! Thanks Again Angie, Mom & Dad. We went back into the Lily's bed still waiting to talk to Dr. Caty. Lily was sleeping so peacefully. I again could sit and watch her all day. Her night nurse was Lauren and she was very nice. She had to take another patient on a "road trip" so Scott and I hung out with Lily until Lauren got back. Dr Caty did not come in to talk to us, his surgery must have took longer than expected. We left at 9:30pm.

January 13th, 2010

Morning

Ok. So today is the big day. Hurdle number one. So far, Lily has gotten through so much! She had major surgery to repair her esophagus. She's been through test after test. Heart, Vertabrae, Limbs, Kidney, Digestive Tract. Aside from the Esophageal issues, we heard good news after all of the tests.

Today's test is the one to see if the surgery worked. Lily will have a contrast dye inserted down her esophagus. Then they will take X-Rays and do a Fluoroscopy (kind of like real-time X-Ray Video) to see if there are any leaks at the repair site.

Nervous. Excited. More Waiting!!

Lynn is our nurse again today and thank goodness. There is a fair amount of stress and her sarcastic wit helps to keep things light. She is also very attentive with Lily, changing her, flushing her tubes, administering her meds. We couldn't ask for a better nurse to care for her.

Lynn called radiology at about 8:30am to try to get Lily in as soon as possible for her test. She was told that all Out-Patients are handled first. They will call her when there's an opening. Lily and Tracy both heard Lynn tell Radiology, "Well if there's a cancellation, you call me so we can get Lily in first!"

Waiting. Agian.

It looks like there are no cancellations. Lily was awake and alert for quite some time this morning. I just can't say enough how beautiful her eyes are when she is looking at you!

Lunch

Tracy's father came up to visit and Lynn said that we all may as well go to lunch. She told us she would call if Radiology came up to get Lily. Otherwise, there's no use hanging around because who knows what time the test will be.

Papa bought us lunch. Thanks Papa!!!

2:30pm

Finally. Radiology called and Lily was on her way to test her Esophagus. Lynn said it could take about an hour when all is said and done (hooking up machines, reviewing the video, etc.) but the procedure itself is only fifteen minutes.

So guess what?

We waited.

3:15pm

I saw Lynn get off the elevator with Lily in her bed. I called Tracy and we literally ran into the hallway to meet her. We could tell from Lynn's face that the news was not good.

"There's a small leak," she said. "It happens all the time. Lily just needs more time to heal."

It was explained to us before the test that there could very well be a leak at the surgical site if it has not completely healed. If this is the case, the doctors said, then Lily will just need a little more time to bulid up the scar tissue and the "leak" should heal itself.

We were devastated, but we tried to remind ourselves that this just makes the road a little longer, not necessarily bumpier.

We walked with Lily back to her room.

4:00pm

Surgeons Dr. Perre and Dr. Walker came in. They told us that right now it's hard to tell if there is a leak or if this is "the original fistula." When Lily was admitted, we were told there were two fistulas (bridge between the Esophagus and Trachea). When Dr. Caty came out of surgery, he told us he only had to fix one fistula. There was not a second. They won't know what the problem is until the Radiologist reviews the Fluoroscopy. Dr. Walker said she has a procedure to do, but she would be back a little later with a more complete evaluation. She did confirm that when the dye was pushed into Lily's Esophagus, there was definitely a small amount that ended up in her Trachea and was aspirated into her lungs. Ugh!!!!

7:00pm

Dr. Walker came back. She told us with a smile that they reviewed Lily's X-Rays and Fluoroscopy and they did not see a leak. Ok. That's good. That means the surgical site is in great shape!!

However . . .

. . . they did see another fistula (bridge) between the Esophagus and Trachea. This is how the dye was able to go from her Esophagus and into her Trachea. She immediately aspirated it and the dye went into her lungs. They said they were going to start Lily on Anti-biotics to prevent infection/pneumonia.

Dr. Walker said she can't say for sure what route Dr. Caty will take to fix this fistula. She said that Dr. Caty will definitely want to do more tests to find out why this fistula was not noticeable when the surgery was done. Dr. Walker said that it could be so small, that it could have been camouflaged by a flap of tissue or something.

But either way, it will have to be fixed. It is now just a question of how. Most likely another surgery.

Oh Lily!!!! You are such a wonderful trouble-maker!

January 12th, 2010

Morning

Scott and I arrived around 8:45am this morning. Lily was wide eyed and calm. Tanya (Lily's night nurse) hung a mobile for Lily to look at and changed her bedding with Lily's pink and green blanket. It's so cute. Jill (Lily's day nurse) said that she gave Lily her Verced around 8:15am. She said that Lily was calm when she came in this morning, but Lily started to become irritable and she didnt want Lily to become uncomfortable so she gave her the Verced. Papa C came to visit Lily today. She loved it. She missed her Papa. Lily would wake up and fuss a little and Papa would sing to her and soothe her and she would fall right back to sleep. I believe Lily already has Papa wrapped around her little finger. He was holding her little foot, keeping it warm and the minute he would move his hand she would stretch her leg out. She loves Papa's touch.

Afternoon

Our afternoon with Lily was awesome!!! She was awake for most of the afternoon and she was so calm looking around, trying to reach for her mobile. (Lily is an over-achiever) Mommy is so proud. We sang, tickeled and Daddy even arm wrestled Lily. Lily won every time. She is definitely Daddy's "BIG STRONG GIRL !!!" Lily would doze off into dreamland, and then wake up bright eyed. I just love looking into her big beautiful eyes.

Evening

What a stinker. Lily just didn't want to go to sleep. Tracy and I just stared at her and held her hand, told her jokes and little stories. We kept trying to get her to go to sleep because she has a big day tomorrow. She does so well with a pacifier. I love holding it to her mouth, my finger in the indentation and feeling her little jaws gnaw on my finger through the rubber. She's so darn cute!

Lily finally fell asleep just before shift change. There was a bit of stress because we had a new nurse that we never met before. It's hard leaving Lily with someone new after becoming so comfortable with some of the nurses here (they are almost like family now, they support us so well)...but we were able to tear ourselves away. But you better believe she is getting some phone calls when she least expects them!!!

January 11th, 2010

8:30am

I dropped Tracy off and went to find a parking space. By the time I got up to Lily's room, Tracy and Jill (Lily's day nurse) were standing over her bed. Lily was screaming her head off. She is just so hungry. Jill said that Lily had a good night. No episodes. No crying. She was given some Fentonol at about 7:30am, and it seemed to relax her for a little bit, but who knows? Maybe she is getting immune to it...sick of it....Whichever, only an hour later, she was completely uncomfortable. Actually, hunger is what it is. I'm sure her tubes are uncomfortable, but the way she roots at the pacifier and spits it out, it is obvious her mind is only on filling her belly.

For the next hour or so, Lily cried in waves. She would come down for a few minutes, put her nosey face on and look arounf the room...watch the nurses, watch her mom, watch me. But then she would realize she was hungry, and start crying again.

9:30am

The doctors were doing their rounds and were all feeling sorry for Lily as she screamed at them. They didn't like that the fentonol didn't work the last time around. So the dr. suggested giving her a low dose of Verced, which is a narcotic/relaxant. It should calm her down during her crying spells and help her to rest a bit more comfortably.

10:00am

Ahhhhhhh . . . Lily loved the Verced. Within three minutes, she was floating on a cloud. She slept comfortably four hours. zzzzzzzzzzzzzzzzz

Mid-Afternoon

Lily woke up wide-eyed and bushy tailed. I waited a few minutes and when I saw it seemed like she was up and alert, I turned her light on and started to take pictures. One of the nurses (not Jill) yelled at me and told me to leave her alone.

I ignored her. I might have even given her a dirty look!!

Late Afternoon

Lily's good mood lasted about an hour. The heart-breaking inconsolable cry was back. Rooting on her pacifier was back. We soothed her and rubbed her as much as we could, but in some moments it seemed to make it worse. We would stand back and she would stop crying, but then a minute later she would start again. In many ways, we were crying along with her.

At about 5:00, Jill had to change Lily's IV port. If you don't know, IVs have to be changed frequently because the veins can't handle the needle for too long a period. In babies, this is even worse. I hung out for a minute to stay and comfort her, but the nurses kicked me out. I found out (by watching) that Lily's veins are a tough catch. It took 3 nurses to try to get her IV in. They tried her left foot, but to no avail. I saw them using a bright light to shine on her skin to look for viable veins. Finally, after about 30 minutes, they called us back in. Her new IV was in her left hand with a stiff board to keep her arm straight. It actually works out well because this is the side her Replogle is on. It will be much tougher for her to pull it out with the IV on this side.

About an hour later, after another round of crying, Lily got another dose of Versed. It was bittersweet. It was nice to see that she was no longer in any pain or discomfort. But drugging your child is not the way any one would like to see them calmed down (I know I know...I'm sure there's some Benadryl parents out there...that's ok...I won't tell anyone!). We just keep telling ourselves that this is helping her recovery. She needs to rest. There is a big hurdle coming up on Wednesday that will either push her recovery ahead, or set it back. Rest is what she needs. We have to keep telling ourselves this, otherwise the guilt will tear us apart.

7:30pm

Lily's night nurse (Tanya) came in. Lily was still sleeping. We called it a night. Great news for the end of the day ---- Lily did NOT have ANY EPISODES today!! Her oxygen levels were great all day!! Yay, Lily --- You Go Girl!!!

January 10th, 2010

Morning

Lynn is the day nurse again today. We love and trust her very much. Yesterday, Lynn and Rebecca encouraged us to sleep in. "We'll take care of Lily. You two need to take care of yourselves too." So Tracy and I took their advice and slept in until 7:30am. Ha, I know it doesn't sound much like sleeping in, but the extra hour was nice. We also took our time in the morning and didn't get to the hospital until about 10am. Just as Lynn promised, Lily was fine. She woke up at about 8am and decided she wanted to stay up to see us.

We found out today that the surgery team came to do rounds first thing in the morning and found Lily on her belly. Apparently, they weren't too happy about this. They immediately ordered a chest X-ray and made Lynn put up a sign that reads, "Please Keep Me Supine." We didn't know this, but the chest tube is very far in her, almost in between her lungs, up near her throat. The surgeons want to be extra sure that the chest tube doesn't move at all.

It was nice to watch her eyes search the room and then lock onto ours. She is so observant and always seems to want to know what is going on. When one of the other baby's machines beep, she turns to see what's going on. When someone new enters the room, she immediately wants to know who it is. I can't wait until we can take her to restaurants so Lily can stare at all the passersby just like Mommy does!

At about 11:30 Lily started to cry. Such strong lungs (considering the chest tube). Again, Tracy knew just what to do to calm her down. She props her up just a little and puts her chin on Lily's chest and says, "Shhhhhhhh." In moments, Lily stops crying and calms down.

At about noon, Lily started to cry again. This time, she was pretty inconsolable. Poor peanut must be so hungry. She takes to the binky well, but when she realizes there's no food in there, she freaks out even more.

To calm her, Lynn decided to give Lily a tylenol suppository (eeeew). Unfortunately it didn't work. A little later, she gave her some more fentonol. It kept her calm for a little while but she still didn't fall asleep. The little stinker has been awake for about 5 hours now and there's no sign that she wants to go to sleep any time soon.

Afternoon

Still awake. I'm thinking my horrible singing voice might be keeping her awake. To her tiny ears, it probably sounds like the screeching of car tires just before an accident.

Crying again. It's tough to watch. Even tougher to not be able to pick her up and comfort her. Especially since there are other babies in the room, and their parents seem to be able to hold them whenever they want. Yes, I'm jealous, but I know it is best for Lily. But all you parents out there, just try to imagine your child crying just a few inches from you, but no matter what you do or how hard you try, he or she remains out of reach. You can see your reflection in their moist eyes, but you can't hold them or hug them. Yeah, we can still put our hands under her, and we can still comfort her with words. We can rub her head so she knows we are there for her. But nothing will be better and more satisfying when we can hold our baby again. Rock her gently, pat her bottom, kiss her without worrying that we might jostle the wrong tube or chord. It will be so amazing!

4:00pm

Lily was approved for Chest PT!! The nurse takes this blue little suction shaped foam thing and pounds on Lily's chest to clear away phlegm and strengthen her lung. It looks and sounds like it would hurt a tiny baby like Lily, but for some reason it doesn't, and she just LOVED it....She was actually getting quite cranky and fussy and was crying quite a bit for about an hour. Yes, she was still up since this morning. Other than a ten minute nap after lunch, she still has been awake all day! Well, after Lynn started the PT, Lily's eyes started to roll into the back of her head and her lids drooped. She found it very comforting. Lynn continued this for about 10 minutes. By the time she was finished, Lily was fast asleep.

For the next few hours, she slept peacefully. Every time she stirred, Tracy or I would lightly tap her chest with our fingers to give her that sensation again. Soon enough, she would fall back into a nice sleep.

7:30pm

Just before going home, Lily had another "episode." She must have gotten some secretions stuck in her throat and had a hard time clearing it. Her Oxygen level dropped to 70%, which is not very good. Luckily it was during shift change and Lynn, Rebecca, and Andrea were all here to see it. It was a simple fix this time, just a little shift of her head to a new position, a little cough (and an increase in the flow of her Oxygen), and her levels went back up.

She seems to be good for these episodes once a shift. "Just keeping you on your toes!" she's telling the nurses!

January 9th, 2010

Morning

Tracy stayed home to go to a memorial service for the father of one of her friends, so I headed up to the hospital at around 8am. When I arrived, I was so happy to see Lily awake and alert. She was just staring around, looking at the flickering light on the ceiling, watching the big crows fly past her window, checking out the nurses. She definitely is nosey.

She was awake until 11:30am (until just before Tracy arrived...haha...sorry T).

After eating lunch, Tracy and I sat by Lily's bedside and wayched her sleep. As she was sleep, Dr. Caty visited again to check on Lily. He assured us that everything was going according to plan. He also said that he thinks that Lily should continue on fentonol to reduce her pain. He confirmed that Lily's chest tube is very uncomfortable and it would help her to have the edge taken off a little bit.

Afternoon

Oh God...Lynn, Lily's wonderful day nurse, was on lunch and Lily had an "episode." What happens is the secretions pool in her throat. If she is laying flat, it interferes a little with her breathing. The monitors start beeping and it shows us that her Oxygen levels are falling. 100 is a great number. Going down to 85 is ok, but not very desirable. Lily got down to 70. Her lips turned a little bit blue along with her eyelids. She was moving her head around, looking to try to clear her throat.

Since she was having such a difficult time, we asked the other nurse in the room to help. Well, she over reacted just a little bit. We asked her to help us prop Lily up a little (Lynn and Rebecca both say that "Gravity is Lily's friend -- during an episode, prop her up and she will clear the secretions in no time"). The substitute nurse did not choose to help her prop Lily up, instead she grabbed the Ambu Bag and started pumping the Oxygen into Lily. This is not something a parent wants to see. I was quietly freaking on the side, Tracy was keeping her cool and trying to calm Lily down. The nurse cranked up Lily's Oxygen and Tracy ended up propping her up a little bit. Lily let out a tiny cough, and almost immediately her Oxygen levels started to go up.

It was a bit scary, but luckily Tracy and I got through it with minimal nerve damage!!

Late Afternoon

Nice. The surgeons approved Lily getting some Tummy time. After coming back from a break, Lily was on her tummy sleeping. What a nice surprise. It was so cute! Plus she also really seemed to like this position. Her Oxygen levels stayed between 98 - 100 the whole time!

What a cutey! Lynn and Tracy put a giant hat on Lily. Poor little kid looked like Toad from Super Mario Brothers!!! About an hour after putting it on, Lily started crying. The good news is her Oxygen levels stayed high. Also, Lynn explained that crying for Lily is very good. Her right lung is still a little weak since the surgeons collapsed it during the surgery, and Lynn says the crying helps her lung to re-inflate all the way and get stronger.

The other good thing (and you will see this in the video) is that Lily has a strong instinct for feeding. The poor girl is SOOO hungry, all she has been getting is fluids with nutrition in it (fats, proteins, vitamins) and they have all been given to her through IV. Her poor tummy is empty, so she still feels those hunger pangs. But as you look at the video, you can see that when she is given the passifier, she shakes her head (rooting) and spits it out when she realizes that she isn't getting any food when she sucks.

Another few days, sweetie, and you can start eating!!

Evening

Sweet Silly Girl woke up about and hour before the night nurse came in.

Tracy is such a wonderful mommy. She already has the touch. She gently props Lily up and whispers gently in her ear. It calms her down almost immediately. They stayed in that position for about an hour.

Then Lynn told us that Lily's night nurse, Andrea, called out sick. We were actually pretty nervous because Andrea is so good with Lily. We thought that maybe we would get a new nurse that we didn't know (and worse, didn't know Lily ---we've already seen what happens when nurses don't know Lily's tendencies ---they over react and throw an Ambu Bag over her face!!). Luckily, Rebecca was here tonight too. Lynn told us that Rebecca requested to be Lily's Primary nurse when Andrea is not in....That makes us feel really good! There are 65 kids in the NICU right now and every nurse that has spent time with Lily has asked to be her Primary nurse. I sure hope there isn't an Ultimate Fight scheduled to see who wins the rights to be her Primary!! Although, I might pay money to see it if there was.

January 8th 2010

All Day

Today was a lot like yesterday. However, Lily slept alot. But that is the best for her recovery. Our big strong girl went twelve hours with no pain medication and barely made a peep. I'm sure a chest tube jammedt into someone's abdomen tends to be a little uncomfortable. Good Girl, Lily!

At about 7pm, Lily did start to fidget and cry. It was so nice because Rebecca and Betsy were both there, and they let Tracy put her arms beneath Lily's shoulders and neck and hold her up a little bit. The closeness was amazing for Tracy, almost like holding her to comfort her.

Lily cried for about 30 minutes, but Tracy held her close and whispered in her ear that everything was ok. Then Rebecca decided it was time to give Lily a small dose of fentonol to take the edge off. It did, and Tracy and Lily sat quietly staring into each other's eyes. What a beautiful moment.

January 7th, 2010 - Recovery Continues

6:30am

Rebecca was Lily's nurse last night. A new nurse, but from meeting her, she seemed very nice. We called her twice during the night and as soon as we woke up this morning. Lily had a good night. She desatted (lost oxygen) once, but recovered nicely. What seems to happen is she pools her secretions in her throat and it interferes a little bit with her breathing. Add a little bit of pain to that, and her Oxygen levels drop. the good news is that she is able to recover on her own.

It was an exciting morning getting ready to get to the hospital because Tracy was feeling a little better and decided she is ready to spend her first full day at the hospital. Sweet.

8:30am

Papa C. came to visit Lily first thing in the morning. Tracy's face almost literally swelled to the size of a small cantalope overnight, so we made a dr. appointment for her. Luckily, the dr. said it was just stress and nerves and gave her a steroid shot. The swelling went down within a half hour.

10:30am
Lily was asleep when we arrived. She's still on fentonol for the pain, so it wears her out. Her daytime nurse (Betsy) said that it's best for her to rest, so try not to talk to her or touch her because "you don't want to wake her up..." Well asking me not to talk to Lily or to touch her is like asking me not to eat my ice cream cone after it falls on the floor! I may know better, but the urge is irresistable!!

Needless to say, we both talked to and touched Lily.

Afternoon

Ok. So recovery IS boring. Until Lily woke up. How nice that the nurses give the family "Touch Time" even though she is less than 48 hours out of surgery. Even though it may be a few more days until we can actually hold Lily, the nurse let Tracy change Lily's diaper. Then she propped Lily up and let us hold her under her shoulder and neck, just a couple inches off her bed. Her eyes were open and she was checking us out. What a champ!

Evening (Mommy)

Lily is amazing! Looking into her big beautiful eyes is wonderful! She was so calm and looking around. Her nurse Betsey says that Lily is "busy" or nosey. Well, she is just like her Mommy, I am busy too!! Lily is also a very alert baby. She follows voices. I asked can a baby only a few days old actually be that alert and Betsey said of course she can. I love when Lily looks into my eyes. Lily became very fussy and started to actually cry. From this moment I had only heard her wimper. This was an actualy cry. Poor baby! I didnt want her to cry, but she still needs to excersise her lungs too, but she had tears, I felt horrible. I just put my hands on her head held her hands, told her "Mommy is here, and its ok" after a few moments she calmed down. I felt on top of the world. Lily had gone 12 hours with no pain medicine. This cry seemed to be a cry that she needed her meds. 12 hours is a super long time. I tried to picture how I would have felt for that long. I would of have asked for pain meds every four hours. So my baby is a trooper. Once Lily was finally calmed she went right to sleep. I had my moment, I really hate leaving her there and going home, but I know that she is in the best place and getting the best care. Lily's night nurse is Rebecca. Scott and I love her. She is so good with Lily. She is very nice and really likes Lily. So I can sleep at night knowing Lily has Rebecca. Plus Rebecca said that at any time during the night we want to know how Lily is doing to just call. So Scott or I call before bed and once in the night. This makes me feel better.

Arrival at Children's Hospital - January 3, 2010 (Daddy's Version)

(Don't forget to scroll down to the bottom to read the first Entry in the blog INDUCTION DAY)

11:00 am

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.


11:15am

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.
There's more:

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.

I looked at Dr. Carmen's digital watch on her wrist. It was 11:23. Significant to me since Grace's birthday is 11/23.

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.

7:45pm
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.

12:30pm

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!!!

1:00pm

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.

1:30pm

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!

2:00pm

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.

5:30pm

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.

8:30am

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!

9:30am


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!).


11:45am

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!

12:15pm

Lynn lets Tracy hold Lily. Tell me this isn't beautiful!!



12:30pm

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

2:30pm

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!

5:30pm

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.

5:45pm

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

8:30am

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.

Early Afternoon

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.

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!

8:00pm

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!