February 3, 2010 -- One Month in the NICU

One month ago today, Tracy and I were in the dark about what could possibly be wrong with Lily. We heard words like Atresia, Fistula, VACTERL . . . And when I say we were in the "dark", I mean it. It was truly the darkest moment in either of our lives. We didn't understand how or why this could be happening to our sweet little baby! Days and nights were filled with tears and hugs that lasted for hours.

30 days later, here we are. A fixture in the NICU. It's like Cheers when we walk in because everyone knows our names. Doctors, Physicians Assitants, Nurses, Cleaning People. They know we sit by Lily's side all day every day and only leave her side when she goes to sleep. Heck, they probably have a pool going on which sweater I'm gonna where tomorrow.

There have been horrible days, good days and days in between. If you have been reading this blog daily (or more appropriately, every third day when I actually update it), you know what I mean. As you read today's entry, you will more than likely also know what I mean when I say that today was a GREAT day!

I'll start with some pictures of Lily from early this morning. We arrived at about 8am and as usual, we took some pictures of Lily for her story.

At 8:30am we fed Lily and she did great! 2 ounces and she gulped it down like she's been eating for longer than just a day. At about 9:30am, Dr. Pierre (from Dr. Caty's team) came in and said, "Are you ready for her replogle to come out?" We were shocked. Yesterday we were told it would be another day or two for the replogle. But Dr. Pierre said she's been eating very well and there's no need for it anymore.

I was actually nervous. Tracy got the tape remover and was working feverishly to remove the tape from her face. Once that was done, Dr. Pierre grabbed hold of the replogle and just yanked it out! Lily gagged a little bit, caught her breath, and became just as peaceful as ever! Tracy and I couldn't stop staring at her. It was so amazing to finally have the tube out of her nose and the tape off her face. The emotions were unbearable. We were so happy, we both cried and hugged Lily.

About 5 minutes later, the pediatric doctors came in to do their rounds. They said they were ready to take the PICC Line out. One of the nurses pulled the tape off Lily's arm, grabbed the PICC Line and yanked it out. She didn't make a peep.

It was like a brand new Lily. No tube in the nose, no tubes in her arm. The only thing she still has are the leads (heart rate) and the pulse ox monitor. So much less restrictive than in the past.

Immediately, we put Lily in her crib and gor her dressed (this time, no need to keep her arm with the PICC Line out of the sleeve!)

There are no words to express how we felt today. For Lily to finally be free of those tubes and wires. No tape strapped across her face!

Unbelievably, it gets better . . .

After the PICC Line was removed, one of the Physician's Assistants told us to bring a car seat in tomorrow. A Car Seat!! One of the final steps before sending a patient with airway issues to the zoo (Never say the H-word in the NICU!) is a Car Seat Test. They need to make sure a baby can tolerate sitting in a Car Seat for 90 minutes. If they can, it usually is only a short time later that they are released to go "to the zoo."

Really!! It's possible that Lily MAY be sleeping in her own bassonette this weekend!

See!? Isn't this a great day!!!

February 2, 2010 --- Happy One Month Birthday, Lily!!!

7:30am

Tracy and I made it a point to arrive at 7:30am today. It's a big day! Lily gets to feed from a bottle! Lauren, Lily's night nurse last night rearranged Lily's feed schedule a little bit to make sure we were able to give her the first feed of the morning. We thought it was possible that Lily's replogle could be out by the time we got in, but no such luck.

But that's ok! The surgeons came in at about 9:00am and said that it was OK to start bottle feeding, but "let's keep the replogle in just in case she doesn't do so well with the bottle." They wanted to start out at 2 ounces (60 cc's) every three hours.

So we agreed to give mommy the first try at feeding the Lil' Monster. What an exciting moment!

The reaction she gave with her first swallow was priceless! She was like, "Why is there something coming out!??" As expected, she was a little pokey. She would slurp once and stop. Slurp again. Some would dribble out the side of her mouth. Then she'd slurp twice and swallow and breathe. It was a very good sign!! Mommy and I were so proud to watch her feed from the bottle for the first time!
We kept encouraging her and she would look around as if to say, "I got this!" She started to do a bit better. Three slurps, swallow. We stopped to burp her after the first 10 cc's. There wasn't much of a burp, but the nurse said we can try to feed her some more. Lily wasn't having it though. She slowed down a lot and got very tired (silly parents decided to give her a bath JUST before the feed which probably pooped the poor girl out!).

Lily finished at 13 cc's, just over half an ounce. All in all, it was very encouraging for a first feed. The nurses and the doctors were pleased. The rest of the bottle was Bolus fed to her through her replogle (I guess the surgeons knew what they were talking about.)

12:30pm -- 2nd Bottle

Since Tracy got the first bottle, I got to feed Lily the second time. I was so excited. Lily had been up for about an hour, looking around before she started to get fussy. She's hungry. Another good sign.

Lily took the bottle right away when I offered it to her. She was so methodical, too. 2 slurps, breathe. 2 slurps, breathe. 2 slurps, breathe. She barely stopped at all. Before we knew it, 20 cc's were gone. It seemed so fast this time, I almost forgot to stop to burp her. It's tough to burp her with all the tubes attached. It's very restrictive, and moving her around could dislodge something. It's really the only time I get nervous when holding her. Luckily, I was able to get her to give a little burp.

I continued feeding her. She kept eating the same way. 2 slurps, breathe. It was so nice. By the time she was done, the whole bottle was almost empty! She drank 50 cc's which is just under the two ounces the doctors wanted her to eat! When she was finished, I held her against my chest and hugged her tight. Pretty soon, we'll be able to do this any time we want, without restrictions!

3:00pm

Mom and Dad have to eat sometime!!! Sorry Lily!

Tracy and I went down for lunch and when we came back, Lynn was holding her. "She finished her whole bottle," she said. It was bittersweet. We were so thrilled that Lily finished the whole bottle, but of course, we would have liked to feed her! Her success by far outweighs our disappointment and guilt in not being there. We will miss dinner if we have to so we can feed her the next time she's hungry!

5:30pm

Lily ate her whole bottle again! However, she doesn't seem to be much of a burper . . . luckily, she didn't spit up at all, so maybe even though we don't hear a burp, she may be letting little puffs of air out. Not to mention that once she gets all her tubes out, it may be easier to position her in different ways to try to get her to burp.

Lily's night nurse Andrea came in at around 7pm. She was so thrilled that Lily was eating. That makes us happy! Andrea has been Lily's nurse from the start, so we are always comfortable leaving earlier so we can get some rest. However, it was cool sticking around for a little bit tonight and chatting with her (even it was mostly about Vera Bradley purses!!)

February 1, 2010

We came in today to the surgeons standing over Lily's bed. Of course, there was a momentary skip in heart beats . . . but they were just doing rounds and checking her surgical site. They also made the decision to stop her continuous feed (she was up to 20 cc's per hour --or 2 ounces every 3 hours). Instead of her formula being continuously forced through tubes at a steady rate using a pump, the surgeons said that Lily can start to Bolus Feed.

A Bolus Feed is pretty simple. A plunger is set up above her and attached to her replogle. Then a full feed is poured into the plunger and gravity does the rest. At 9:30 this morning, she was given 60 cc's that dumped right into her belly in about 20 seconds. A full 3 ounce feed. We will see how she handles it. If she does handle it well, then we may be able to bottle feed her tomorrow!! If that goes well, the replogle tube in her nose may come out (which means no more tape). Also, her PICC Line (the IV in her arm) could be taken out. I just realized I never explained her PICC Line.

When Lily was first brought in to the NICU, the nurse said that they wanted to put a PICC Line into her vein. (This is the definition from Wikipedia.com: is a form of intravenous access that can be used for a prolonged period of time. A PICC is inserted in a peripheral vein, such as the cephalic vein, basilic vein, or brachial vein and then advanced through increasingly larger veins, toward the heart until the tip rests in the distal superior vena cava or cavoatrial junction.) PICC Lines are more stable than IVs since IVs only can stay in a vein for up to a week without the vein collapsing. The only drawback with a PICC line is that the risk of infection is magnified. Luckily, Lily has not had any problems with infection. Regardless, this is one tube or chord we cannot WAIT to be removed!!

Stop by later for more updates....In the meantime, some more updated photos:


LILY'S FIRST OUTFIT

SAY CHEESE!!

SLEEPY GIRL

MOVED TO A BIG GIRL CRIB

LILY'S CUTE PANDA SLEEPER

THERE ARE NO WORDS!

Evening

Lily's feeds went really well. She was fed at 9:30am and every three hours after that. You can tell by looking at her that she felt the formula hitting her belly....Her eyes moved around like, "Hey, what is that!?" There were a few instances after each feed where Lily gagged a little bit, but it looked more like she was gagging on her saliva than the formula coming back up.

Lily also spit up for the first time! It was a very little amount, and it didn't phase her one bit. She just kept checking out everything and everyone in her room, not caring that her T-shirt was suddenly wet and smelly. Tracy and I cheered for her first spit-up! HA!

The other good thing is that Lily is digesting everything so well! She took in a total of 280 cc's in and her diapers throughout the day weighed 271. That's fantastic....

Lastly, Dr. Caty came in during the late afternoon to check on Lily. He said the game plan is for Lily to continue with the Bolus feeds for the rest of the day, and then tomorrow (as long as she continues to do well), they will take the replogle tube out of her nose and we can start bottle feeding!! "Who knows?" he said . . . "Lily may be home by the end of the week."

We were speechless! Spending all this time (a month on 2/2) in the hospital, we think all the time about bringing Lily home . . . but it always seems so far away. Tracy and I agreed that we still need to take things one day at a time and just make sure that Lily is doing well with all of the changes to her routine.

But just imagine . . . . .

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!!