February 19. 2010 --Pictures

Everything is Awesome!! Here are some new pictures . . . (Thanks Aunt Rachel!!! Great photos!!)

February 15th, 2010

Wow . . . we have been home over a week now and it's getting tougher to come on here to update. Not for any real reason other than we are at a comfortable place and there has been no excitement. Not that all the time spent in the NICU was exciting, but it certainly was worthy of updates on a regular basis to let everyone know what Lily went thru that day and how we felt.



Late last week I joked with Tracy that I should update this blog with a simple:



UPDATE: Eat, sleep, poop, cry, eat, sleep, poop, cry . . . etc.



That is pretty much the extent of it. And that is a WONDERFUL thing! We don't like excitement. We would much prefer that Lily keeps it boring for a long time. Let her get over the difficult first month of her life. Let US get over the difficult first month of her life!



Sounds good to us!



So . . . Let's see. . . eat, sleep, poop, cry is a pretty accurate update. Although, Lily doesn't really cry that much. She really only cries when she's hungry or when her diaper is wet (she seems to enjoy when her diaper is chunky....sorry, but it's true!) She sleeps unbelievably well. Overnight, Lily would probably sleep much longer than we let her. At the hospital's direction, we wake her up at least in the 5th hour to feed her. Although, last night we let her sleep and she slept from 10pm until 5:45 this morning. What a good girl!!



Last week, Lily caught her first cold. It's bound to happen!! She had a very stuffed up nose, and luckily it didn't seem to aggrevate her too much. She slept fine and got a little fussy here and there, but we would just take the little bulb thingy (whatever it's called) and suck out the little nasties and she would be fine. She is still a little junky, but getting better.



She really is quite the perfect child so far. She loves to be held and talked to, isn't a fan of extended stays in the swing (she'll put up with it for about 5 minutes before deciding she wants out), and finds anything to stare at for 10 minutes at a time.



As for eating, there was one thing that we were told could be a "side-effect" of her surgery. That is reflux and vomiting. She has done pretty well with both so far. She is on Zantac as a preventative measure for reflux. She really has only spit up maybe three or four times - which is actually better that a typical baby. Tracy and I have noticed that her spit ups are pretty obvious, so we've been able to avoid those. She gets a look on her face just before she spits up. She starts to move her tongue in her mouth a lot and lifts up her chin. As long as we notice that and lift her to a more upright position, she seems to avoid spitting up. We just make sure that we keep her from laying down for about an hour after she eats. It's worked very well!!

Lily also had her first couple doctor's appointments. She met with her pediatrician and also with her surgeon, Dr. Caty. Both were uneventful! We tried to get a picture of Lily with Dr. Caty, but our camera ran out of batteries!! =(

For the frequent followers of Lily's blog, sorry it's been so long. I will try to do better with at least posting pictures. She truly is changing every day. We get the ocassional smile now. We can't wait for them to be consistent. Pretty soon!



Until next time, enjoy some pictures:



For those who say I don't put enough pictures of myself on here....duh!! now you see why!??



Sleeping on Daddy's comfy belly




Girlie Girl!

Grace loves her sister!!!

Lily's first time under her gym . . . pretty soon she'll enjoy it more.

February 7, 2010 -- The Joys of Normalcy

The first day and a half home with Lily was wonderful, as expected. She was such a sweetheart, barely making a peep, looking around the house, sleeping like a champ! Today, however, reality set in....hahaha....

In the morning, Tracy smelled something coming from the baby. Believe me when I say, it wasn't pretty!! Lily ruined her first onesie...Only it was WAY bizarre! The explosion of nastyness was all up the front of Lily, not in the back. We were taking pictures just beforehand, and I think this is one of them...You can tell she was plotting.

Lucky for all of the readers of this blog, we didn't take pictures of the aftermath. We were too busy trying to save the furniture and prevent Lily from rubbing her hands on her chest. It was pretty comical, really. Needless to say, Lily was given an immediate bath, and she DOES NOT like those one bit! She hates being wet and screamed her head off the entire time. It was awesome!! Really!!

Here are some more pictures from the last couple days:

The Beautiful Sisters!

Nice to See You Again, Cousin Sarah!

Nice To Meet You, Cousin Ayden!!! (Couldn't fix Lily's red-eye -- Great picture, anyways!)






Nice To Meet You Too, Cousin Ava!!!! (Finally!)

Good Times In The Swing -- Loving the mirror on the mobile!

Oh Yeah, Somethin' is Definitely Brewin'!!

Lily In The Boppy Chair (This must have been just after the explosion. She definitely realizes something ain't right)

More signs of normalcy:

Lily was super cranky today. It started when my parents came to visit (although I am sure it wasn't their fault!! haha). We could tell that Lily was uncomfortable with a tummy ache. She kept trying to sleep and then would wake up and cry some more. After my parents left, it was more of the same. We have been so spoiled so far that we were surprised that Lily could even get so loud!!

After thinking about it, we decided that it must be from the formula. At the hospital, Lily was given concentrated Enfamil Premium Lipil formula (Enfamil is a registered trademark of blah blah blah). We asked our pediatrician if we should stick with this or would he recommend something else? He said to stick with it or one of the generic comparable brands (Wegmans, Wal-Mart, but NOT CVS). So I went out and bought Wegman's brand. However, the label said it was comparable to "Enfamil Lipil" but didn't say anything about "Premium."

Well, it is very possible that this is the reason for Lily's belly ache. Luckily, Wegman's is very good about returns and I was able to return the unused portion for a credit. I came home with the Enfamil Premium Lipil and we will see if it helps her belly for later today. If not, it may be a LONG night. But bring it on!! It will make up for all the nights we lay awake in bed wondering how she was doing in the hospital. She can wake us up as much as she wants!!!

February 5th, 2010 -- LILY'S HOMECOMING!!!!

8:00am

We weren't sure what the plan was at the hospital. Is Lily going home? Staying? Jayasree told us that Lily would be able to watch the Super Bowl, but did that mean we are leaving the hospital on Sunday?

Just in case, I dropped Tracy off and went to take the car to Delta Sonic for an Interior Detail. The garbage has sort of been piling up this last month with all the back and forth travel.

I was still driving down Delaware when my phone rang. It was Tracy. "We're going home today," she said! The doctors just needed to complete a last physical on her before signing off. We said goodbye and I hung up the phone. I'm surprised the sceam I let out didn't blow out the windows!!

I couldn't get back to the hospital fast enough. Delta Sonic was a blur. I don't even remember driving back. All I kept thinking was, "Lily is coming home!"

As soon as I walked into Lily's room, Tracy and I hugged. We knew we were close to going home, but we still couldn't believe it! Lily looked so cute and prepared for the big day!! Everyone in the room thought I was nuts as I started to take pictures of everything. The "Dogwood" room sign. The doctors/nurses area in the hallway. The Light that used to flicker that always caught Lily's attention and kept her occupied for hours:

I took more pictures of her while thinking, "Wow . . . last NICU pictures!"

The wait was unbearable. I returned to the hospital at about 9:30am and the doctors didn't come for rounds until about 11am. They confirmed that we would be going home today, but they said there was plenty of paperwork that needed to be completed and Karen, the Nurse Practitioner, said she would start it when rounds were complete.

It's only fitting. Through two surgeries and about 741 tests, we waited a lot. One more wait would not kill us completely.

1:00pm

Peggy came in to take over as Lily's nurse for Lynn. She started to complete some of the paperwork with Tracy as I held and fed Lily. This was also fitting since Peggy was the nurse that was there the day Lily was admitted. I still remember her asking me all kinds of questions on that first day, and my stock reply was, "Can you please repeat that?" My mind was somewhere else that day!

At about 2:00pm, Peggy told me I should go warm up the car and move it to the front entrance. "It should be any moment now.

When I returned, Tracy was strapping Lily into the car seat, tears already starting to pool up in her eyes. "Hurry up, Daddy," Peggy said. "It's time!"

Peggy placed Lily's car seat in a buggy stamped with NICU on the front like a little license plate:

2:30pm - The Long Walk

Saying goodbye was very difficult. Tracy was in tears as we hugged Janelle's mom and said goodbye. We wish they were walking out alongside us, but their road goes in a different direction. Their strength amazes us, and we know that they will soon be joining us in the outside world.

Dogwood is the farthest room from the NICU entrance. Our walk to the elevators outside the NICU was long. We stopped at nearly every room. Nurses that have cared for Lily and some that just recognize us from our daily excurions thru the NICU for the past month came out of their rooms to say goodbye. Some parents that we have met during Lily's journey also came out to say goodbye.

Tracy and I have discussed our departure from the NICU and how it will be strangely difficult saying goodbye. These people have been a part of our lives for so long. In many ways, they have become another part of our family. This is absolutely crazy to say, but there will definitely be separation anxiety when we are home and there's no more NICU. I actually compared it to the Stockholm Sundrome, where hostages actually begin to care for their captors after a long period of time in captivity. Completely crazy, right?

Anyways . . . this is beginning to get novel-like and it's getting late. How about I tell the rest of the story in pictures?

The Hallway

The Elevator

Lily's First Car Ride!!

Thanks for the sign, Papa and Jeremy!

Crossing the Threshold

On the Couch!!

Do they make smaller cribs!??

We arrived home at about 3:00pm. Not long after, I went to pick up Grace from school. Like I mentioned yesterday, I had wanted Grace to be surprised when she walks in the house and sees Lily. However, how was I going to get her past the Welcome Home sign in front!?

I decided to tell her about a new magic trick I learned which required her to close her eyes. It worked like a charm!!

Grace was pretty oblivious when we got home and not paying attention. When we opened the door, Tracy was on the couch feeding Lily. Grace was paying attention to her shoes when Tracy said, "Hi Grace!" She was surprised, because she thought Tracy was at the hospital! Then she saw Tracy holding Lily. Her mouth dropped and her immediate reaction was, "Awwwwwwwwwww." She ran over to Tracy and watched her finish feeding Lily. It was SO nice, just like we knew it would be!

February 4th, 2010 (Updated 10:10pm)

Things seem to be moving fast! Dr. Caty's surgical team dropped by first thing this morning and Dr. Walker said that Lily is no longer on their daily charts. "Dr. Caty signed off on her going home," Dr. Walker said. "It's up to the NICU doctors for the exact date." Tracy and I just looked at each other, our jaws dropped.

Wow! We were told that Dr. Caty would not sign off on her going "to the zoo" until Lily gained weight for three days straight (that would put it at Saturday . . . and by the time the NICU doctors signed off, possibly Sunday).

At this rate, Lily may be going to the zoo tomorrow!! We should know more later, so stay tuned.


In the meantime, there's still another update or two to get to today.


First, Kim, Lily's night nurse, performed a standard hearing test on Lily. Unfortunately, her right ear seemed to have some trouble, so there will be a future trip to Children's at a later date for something called a BAER hearing test. For this test, instead of relying on the baby to respond, there are leads hooked up to her head that can read the brainwaves. It is more reliable than a standard hearing test. The doctors here were not concerned, and said that there are many babies that fail the standard hearing test, but the BAER test shows that they can hear just fine.


Later today will be Lily's Car Seat Challenge. That's what they call it. It's a funny name and it sounds like Lily could win a million dollars for getting through it. But even better!!!!---->if she gets through it, she is one step closer to going home!! We will take that over a million dollars any day!


Until the updates later on, here are some pictures from today. I hope they brighten your day the same way they brighten mine!

UPDATE:

OK....well, if the Car Seat Challenge was worth a million dollars, we just lost! They never told us if Lily could phone a friend or poll the audience. Either way, she didn't care. After 15 minutes in the chair, she started screaming her head off. The nurse, Cathy (LOVE HER!!!!) said let's not make her scream for the next hour and a half. She said we can try later when she's more tired.

The good news is that she didn't de-sat, her oxygen levels were fine. They don't care if she cries or screams her head off. They only care that she keeps her oxygen levels high. So its not really a failure. More of a voluntary abatement.

Otherwise, Lily had a fantastic day. She is always so calm and peaceful. We asked Jaysaree if it's possible we are going "to the zoo" tomorrow. . . she said she wasn't sure, but "anything is possible."

It would be so great! I know I haven't talked much about Grace in this blog --she is Lily's 10 year old half sister. When Tracy and I started this blog, our intention was to focus on Lily and her battles and her successes and backsteps. It has been that, but it also turned into our battle with our emotions with everything that's going on. We intentionally wrote around Grace for the most part because her absence from our lives this past month has hurt us almost as much as the situation with Lily. Grace's mom has kept Grace with her a majority of the time so we could spend our days with Lily. Luckily for us, Grace has been a trooper through all of this. We talk to her almost every night on the phone, giving her updates. She always ends the call with, "Give Lily a kiss for me!"

Grace has not even met Lily yet, and that's been a source of great anguish for us. The NICU is only allowing visitors 14 and older. A couple weeks ago, Grace told me that she wanted to "beat up the security guard and run on the elevator to see Lily." She even said, "I don't care if I go to juvie!" She is so funny like that!!

If Lily comes home tomorrow, our plan is to bring her home and then I will go pick Grace up alone. I will then bring Grace home and she will be so surprised to find Lily and Tracy waiting for her. It will probably be one of the most emotional moments for Tacy and me. We have waited so long for this. So if you have the chance, buy some stock in Kleenex because we will probably go through a lot of it!!!

Good Night!

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!!)