Monday, February 15, 2010
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!! =(
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
Sunday, February 7, 2010
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!!!
Saturday, February 6, 2010
Anyways . . . this is beginning to get novel-like and it's getting late. How about I tell the rest of the story in pictures?
Thursday, February 4, 2010
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!
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!!!
Wednesday, February 3, 2010
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.
Tuesday, February 2, 2010
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!
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!
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!!)