My Little Liliana

Whenever I write a blog post, I hear good feedback, so I thought I’d share some thoughts with you.

Things have been going well for us recently.  As many of you know, I have a new job.  I recently got back in touch with my best friend.  Liliana is growing well though still has plenty of obstacles to overcome.  Damien is a monster and has a great personality.  And lastly, things are going great living in a new place.

My new job is with ING Direct.  It’s a fantastic place to work, has an amazing culture, and includes so many opportunities.  It is about 30 miles away though, and from my house, there are no highways directly there, so I struggle to average higher than 35mph.  Generally, it takes me an hour of single-lane double-yellow driving down narrow back roads.  I’ve gotten it down to a science now, but find myself getting a little tired of this one same ideal route each day.  Other challenges include a future period of being on call and a rotating schedule which puts me on 10-7 for four weeks.  I don’t need to mention how awful it is to get home at 8PM at night.   At least I’m starting to mold into the culture better finally.

My best friend who used to live across the street finally picked up the phone about 6 months ago.  I’ve been concerned that moving 15 minutes further away would hinder our ability to hang out, but so far it’s not been the case.  It is a huge stress release having a good friend around again.

Liliana continues to struggle in some areas.  She seems to have allergies or some mucus drippage.  Much like her father, mucus tends to collects in her lungs overnight.  She has to cough mucus out every morning.  But it doesn’t come out as gagging, this is cough-wretch-wretch-wretch-choke-wretch-choke-cough and it goes on like that for an unbearable five minutes each morning.  It apparently also happens during the day, its frustrating.  At least she hasn’t been getting pneumonia, bronchitis and all those other irritated bronchial tube infections.

She also continues to not eat.  There are points in time where she’ll actually ask for snacks, will know which ones she likes and doesn’t like, and will eat them herself.  Sometimes she struggles to know how many to put in at once.  Other times, she’ll go for what seems days before eating anything.  One taste is all she usually wants.  And then, there’ll be odd moments where she’ll take a whole baby carrot and just shove it into her mouth.  Luckily, she just wanted to taste it, and the carrot immediately just slid right back out.  We do have an occupational therapist working on eating with Liliana, but I, frankly, don’t see much progress.  We are trying to have more meals at the kitchen table as a family, but all she does is pretend to eat, and will almost never actually eat or drink anything.

Her speech is poor for her age.  Her vocabulary is vast, and she understands a great deal of words and complex sentences, but can not say a lick of them.  Today, Mercy and LIliana were looking at a book about the letter “i”.  One of the pictures was Ice Cream, so Mercy tells Liliana, “Go show Daddy this picture.”  “Go show him.”  30 seconds later, she comes tromping into the room, holding open a tiny cardboard book that shows a picture of ice cream.  She even held it open to the right page.  It does get depressing sometimes when other people talk about “My son knows all the names of the kids in his preschool class” and yeah, he’s the same age as Liliana. That’s just an example of how behind she is.

Damien is a monster.  Luckily, he’s the good kind of monster.  Haha, he likes rice cereal, he likes to sleep.  He likes to eat eat eat and then sleep some more.  He’s growing fast.  His physical features are strange.  His hands are huuge.  Like Liliana, he’s got the Chang fingers, where the widest part of the finger is the segments instead of the joints.  Looks like tiny delicious sausages.  His arms are also long an apish, which could come from my side a little.  Besides that, he has a very asian skin coloring, and we believe he shares a lot of physical and mental qualities with Mercy’s brother, Wah.  He’s a very stocky little guy with a big chest and a large appetite.  His laugh is infectious and his smiles will light up a room.

We also moved to my parent’s houses recently.  We live in two adjacent bedrooms on the ground floor.  It is mildly cramped, and we all had to make serious amends to our lifestyles to adjust.  Yet, I don’t regret it in the least.  We have a lot more support when taking care of the kids, and Liliana really really benefits from interacting with a more animated character than either of her parents (Mercy and I are both rather reserved).  We’re all struggling with boundaries and how to define them.  I feel like the rooms that we live in are ours, but they clearly aren’t.  We’re barely even renting.  And, as we all expected, some of the utility bills have doubled.  I really don’t want to create resentment, so am always mentioning my concern with that bill and this bill, and am trying to keep abreast of how their utility bills are looking.  BUT, our financial goal in moving in here was to save money and reduce debt in preparation for buying a house.  I can’t do that if I’m getting a fancy mobile phone (people laugh when I pull out my phone), buying clothes and supplies to work out in the gym at work fashionably (I’ve heard people gossiping about a guy who does yoga in his work clothes during lunch, how gross!), or helping to pay doubled heating bills.   The good news is that we’ve now been hear since March first (two months d0wn), and my financial goal has been an astounding success.  Working for a bank that likes to educate its employees does help.  I’ve had more good financial advice in the last 2 months than I’ve had in 10 years.

Did post some pictures on Facebook if you want to go look.  Just a couple of cellphone pictures again.  Here’s my top three from the uploaded pictures:

Tonight was the second night that Sean and I tried feeding rice cereal to Liliana. The first night was practically a failure: We used a small measuring spoon to get the rice cereal into her mouth and although she swallowed it, she cried and cried. That was sometime last week and we hadn’t tried since.

Sean wanted to try again tonight, so he mixed up the rice cereal with some of my milk and put it in a syringe. He fed it to Liliana through the syringe, and she cried yet again. I said something about how this was probably reinforcing her oral aversion since it seemed she didn’t like it. Sean countered that she’s going to learn to like it by feeling that her stomach is getting full as she’s eating. Sure enough, as he continued to feed her Liliana stopped crying and honestly, she looked like she enjoyed the rice cereal! She stuck her tongue out to lick the food up into her mouth. It was very interesting to see.

I think she ate 5-7 ml total of the rice cereal, which is a great step in the right direction.

Liliana and I are going to see her GI doctor tomorrow. Since Sean’s car is currently getting its fender repaired, I’m going to have to drive Sean to work tomorrow around 8:30. I’m not looking forward to it, but it’ll be nice to get out in the warmer weather without having to bundle Liliana all up.

Apart from that, there’s a new website layout! The previous one was very crowded, and although I liked that there was a lot of information available, it was too much to handle. So check out the new layout of My Little Liliana when you get a chance! If you’re using Internet Explorer, you may have to change your text size to medium or larger in order to read the text properly.

All right, it’s getting late and I have things to do early in the morning. Good night!

Liliana is getting too big for her sleep positioner, so it’s about time for us to buy a new one. After combing through the many positioners and wedges online (most of them being for newborns), I’ve narrowed our choices down to three.

Reflux Relief Sleep Positioner from OneStepAhead.com

On OneStepAhead.com, we have the reflux relief sleep positioner. With a moderate price of $39.95 and a weight limit of 20 pounds, this looks to be an easily affordable way for us to keep Liliana elevated throughout the night.

I like the idea of the three-point harness. Our current sleep positioner has two armrests, one which attaches through the magic of Velcro, and it’s not very reliable in keeping Liliana up. Also, the Velcro sometimes attaches to Liliana’s clothing, damaging the sleeve of her right arm. With the harness, I wouldn’t have to worry about her sliding all over the place.

This item also inclines the upper body at a 30 degree angle. Sean and I consider our current sleep positioner to not have as much of an incline as we’d like, but this other positioner looks great.

Added bonus? It folds up neatly for traveling.

The Tucker Wedge and Sling

Another option we have is the Tucker Wedge with Sling. I’ve seen this before and laughed at how ridiculous it looked. Basically, it’s a huge wedge with a sling attached. Your baby is placed inside the sling and you use Velcro to strap him in. There are three different sizes: preemie, small and medium. The small size, which is for babies 6 – 16 lbs., would be the size we would have to get if we were to purchase this.

With a price of $121-129, I’m not so sure about it. I don’t find anything particularly innovative about this wedge, and am very uncomfortable with the idea of Liliana being strapped mid-air. And although it’s very tempting to have a daily laugh at Liliana attached to this eyesore, I’d rather be laughing with her and not at her.

Nap Nanny in Confetti Pink

Finally, there is the Nap Nanny. It’s a bit similar to the Tucker Wedge in that it is big and bulky, but instead of an ugly wedge the Nap Nanny is an attractive, contoured piece of polyurethane foam. Many of the reviews on the Minky Camel Nap Nanny on Babiesrus.com are positive and showcase photos of babies currently using the Nap Nanny.

This product has no maximum weight restriction, but the manufacturer suggests to not use it for overnight sleeping once your child can sit up on their own. Of course, reflux is supposed to start to go away once your baby can sit up by him or herself so there would no longer be a need for an elevated sleeping surface. Nonetheless, this can be used for napping or lounging once baby has reached the sitting up milestone.

The Nap Nanny uses raised sides and a safety harness to keep baby in (Yeah! No Velcro!). The product has a 3o degree angle, and includes a cover with a waterproof liner.

Another similarity to the Tucker Wedge is the price: The Nap Nanny retails at $129.99.

So which one of these should we buy? I’m really interested in the Nap Nanny and although the price is a bit steep for a family with limited means, the opportunity for long-term use is attractive. The other feasible option is the reflux relief sleep positioner. Liliana’s only gained 4 pounds since her birth 4 months ago. It seems safe to assume that it will be several months until she reaches 20 lbs, which is the max weight for this positioner. If Liliana’s reflux were to improve soon, whether it be through medication or surgery, I’d be happier with the purchase of the sleep positioner over the Nap Nanny.

I may have to do some more research and I’ll definitely have to discuss these options with Sean. What do you guys think? Is there an angled sleep positioner for infants that you’ve had success with?

Ah, Sunday mornings. The last bit of reprieve before the ongoing commotion that is the work week.

Anyway, Liliana has been refusing the pacifier ever since I followed the advice of the feeding specialist present at Liliana’s barium swallow. The feeding specialist, seeing that Liliana sucked on the pacifier but not the bottle, suggested that I dip the pacifier in milk so that Liliana gets a taste and that she gets used to it. I thought, “Okay. That makes sense.”

The first time I did this, Liliana was perturbed. She stuck out her tongue to test out what I was giving her, tasted the milk on the pacifier, and then turned her head away. Repeatedly. The next time was a bit better but not by much. Liliana licked the pacifier again and again, but still did not take it into her mouth.

The pacifier was the only thing that consoled her even as she bawled in pain, evident when she had to get blood taken. Now, she doesn’t trust the pacifier at all and we have to offer her our fingers or our knuckles to slobber on. We sometimes take off her mittens so she can slather her saliva on her own fists, which she does with profound interest. Even when we don’t take off the mittens, she licks her cotton-covered hands.

In the past few weeks that we’ve given her the pacifier, she’s chewed on it. Last night though, she was making the loudest sucking noises in her sleep that it woke me up and she continued her sleep-sucking throughout the night. Sean, who did the 6 AM feeding for me, told me that he got her to suck on the pacifier for a long time while she was still asleep.

Maybe Liliana will find that the pacifier is safe again as long as we keep trying and she continues to have good sucking dreams. I hope when that is accomplished, that we are one step closer to getting her to drink from the bottle again.

Just two more weeks and Liliana will be 3 months old. Her reflux doesn’t seem to be improving at all and to make things worse, she’s been breaking out into random crying jags. Apart from that, she’s managed to smile twice unprovoked after spitting up so I guess she’s mostly happy.

Earlier this week I took Liliana to the hospital for a series of GI tests, which consisted of an ultrasound, a barium swallow and an X-ray. She was hungry through all of it, the poor thing, but she behaved well for the most part and only got fussy twice. From the comments I heard during the tests, there’s a possibility that some of her intestines are still herniated and her spleen is hiding somewhere. I’m really interested in what the X-rays show, but won’t be able to find out until we have our follow-up appointment with the GI doctor at the end of February (so far away!).

I was thinking that I need to post more pictures and I don’t think I posted any of when Liliana was born. These are when she still had her stomach, bowel, and spleen herniated into her chest.

Liliana right after being stabilized (probably 20 minutes after birth)

The first time I got to look at her up close

Looking back at these photos makes me thankful for how lucky we’ve been that Liliana’s CDH was diagnosed early and we found a hospital that could take care of us. I’m grateful for Liliana, and though I knew being a parent wasn’t going to be easy, I wish someone would have impacted to us how very difficult caring for a CDH baby would be.

You know that feeling where you believe nothing bad can happen to you? I have that feeling ingrained into my being. I think I’m invincible and that I can overcome anything. That I won’t have anything to worry about because I can work things out.

So when I was told that my baby, because of her condition, could possibly have reflux, asthma, learning disabilities, I wasn’t all that concerned. Reflux? Pah! It was the arrogance of the naive.

And yet here we are. Sean and I have a beautiful baby, as stinky as she may be sometimes, and we love her. She drives us crazy and will continue to do so for the rest of our lives, but we absolutely love her to death and revel in all of the ways that she’s growing up.

But to those who have a CDH baby still in the womb: Think about it. Discuss the hardships that may face you. I gave up a full-time job that I loved to take care of Liliana because how can you trust anyone else to take care of your special needs baby unless you got a trained nurse? Would you be able to handle having a baby throw up all over herself and sometimes all over your clothes? Several times a day?

How would you like bolting from bed in the middle of the night when you hear your baby cough and gag just so you can sit her up with one hand and hold a bib under her chin with the other? Just so you can watch as her eyes get big, her stomach squelch, and the milk she was given 2 hours ago gets slowly pushed up her esophagus so it can flow messily down her chin into little pools on the bib.

And then there’s always the possibility of your baby not growing or ending up “a failure to thrive.” Or even the chance that you can’t take it anymore and you seriously harm your baby.

Ultimately, would you take the chance of having your baby and then after she is born, she becomes so unstable that all of the medical professionals in the world couldn’t save her?

Parenting will always be a struggle, but you have to anticipate your limits. When you get the diagnosis that your baby will be born with a condition, you have to understand all of the associated risks and the fact that you are not invulnerable to them.

Regardless, I am happy and every time Liliana smiles, it is worth every tear I’ve ever shed in my life.

This Saturday my aunt and two younger sisters flew into Philadelphia to come visit us and our new bundle of joy. I’ve been so busy taking care of Liliana and working on a new source of income that I had not realized this weekend was going to be a huge weather disaster.

Sean and I got ready early in the morning to head over to the Philadelphia airport. We packed several feedings for Liliana and supplies so that we can feed her through her tube if necessary. We bundled up and headed out around 5:50 AM. It was already snowing.

Liliana bundled up

The snow continued to fall, and once we were at the airport, we saw that flight after flight was being canceled. Luckily, the flight that my family was taking was simply delayed for a few hours. It was only a matter of time until we could begin the treacherous drive home.

But until then, we had to wait. We tried feeding Liliana several times but ended up putting milk through her tube. With how cold it was outside (and inside in some places), the milk would stop flowing, possibly because it was congealing or freezing up. Traveling itself was a hassle, as it became time for Liliana’s next feeding and there was no way to heat up her milk until we arrived at our destination.

With how susceptible Liliana supposedly is to any respiratory diseases, we kept our distance from people at the airport. Sean and I are very new at this parenting business, so we were surprised and albeit a little put off by how often people smiled at us simply because we had a baby. Liliana is really cute though so I can’t blame them.

Daddy and Liliana in the bunny hoodie that Auntie Christina got her

Fast forward a little to today. Today’s the last day that Liliana’s aunts and great-aunt will be in town, so we decided to go to Longwood Gardens for a quick look. Liliana slept pretty much through the whole thing but Auntie Christina took a few pictures of her with her mommy and daddy!

Floppy ears

The sidelong look

Having a baby as young as Liliana is tough during the winter, as it seems like you can never ever get out of the house. And when you do, you have to pack up a lot of milk, extra nipples, and in Liliana’s case, the feeding tube supplies. Once it comes time for the baby to eat, you have to warm up the milk (which most likely involves standing at a sink for 10+ minutes running warm water over a really cold bottle) and devise a way to keep the milk warm in temperatures under 30 degrees Fahrenheit. Overall, it’s not easy but I guess being a parent never is!

This past weekend was a complete blur of information. Liliana started taking her full feeds of 2 ounces on Saturday morning, triggering an onslaught of info sheets and things we have to do before she can go home. My memory isn’t that great still, so I’m going to resort to another list.

• Sean and I took the CPR class on Saturday morning where we practiced on baby dolls. Very useful information, but I hope that I won’t ever have to use it.
• We fed Liliana a few times this past weekend. We used the bottle a couple of times and she would take around 25 ml. I also tried breastfeeding, which was a bit awkward for both Liliana and I, and she took 8 ml the first 2 times. The third time she took 12 ml. On Tuesday I’m going to go in and try breastfeeding some more.
• We changed a lot of stinky, dirty diapers. I now know and can recognize what Liliana’s poop smells like.
• We weren’t able to take an NG class, but the nurse showed us how to do it and we practiced on a puppet. Sean performed the procedure of inserting a tube into Liliana’s nose and down into her stomach on Sunday and I get to do it this upcoming Tuesday. Liliana will have to keep the NG tube until she is taking all of her feedings by mouth. She’s not doing that now because she gets tired.
• We were given a prescription for Vitamin D drops for Liliana. Liliana is also starting to take Zantac and we will most likely be given a prescription for that.
• Before Liliana’s discharge from the hospital, she will be given her first dose of the Hepatitis B vaccine.

I think that’s it. Once they see that Liliana is doing better with her feedings (she sometimes throws up, depending on how fast the milk goes into her stomach when they put it through the tube) and is gaining weight steadily, they should be letting her go. We’ve been told it will most likely be this week so Mommy and Daddy are going to have a lot less sleep in the near future!

After braving the traffic of the Schuylkill, Sean and I arrived at the hospital shortly before 8 o’clock last night. Since Liliana didn’t need the heater bed anymore, they moved her into a hospital crib. I thought the change brought down the mood in the room, simply because the crib looked like a baby prison with all of its metal bars.

In any case, Liliana is doing well. She took 40 ml at her 9 o’clock feeding and her nurse said Liliana was going to get 45 ml at midnight, so they’re increasing the feedings by 5 ml every 12 hours now. Liliana’s body weight was taken last night and it turns out she’s 6 pounds, 5 ounces. Just a little more until she’s the same weight as when she was born!

For Liliana’s safety after she is discharged, Sean and I are required to take a CPR class which we are scheduled to take this Saturday. The nurse last night said that we should also take an NG class (NG, according to Google, stands for nasogastric) so that we know how to give Liliana feedings through the tube in case she can’t or doesn’t want to feed orally. After reading these instructions on inserting the tube, I’m not really sure how comfortable I would be with it. Sean is pretty adamant that all Liliana wants is to breastfeed naturally and his arguments for it are pretty sound, so hopefully when we do get her home we won’t have to resort to using a tube.

After her 9 o’clock feeding, Sean read Green Eggs and Ham to Liliana, during which she would look at the pictures in the book and Sean would tell me to come look because it was so cute. I declined because I was tired (I did laundry, dishes, and a lot of cleaning/organizing while waiting for a Verizon tech all day who never showed up) and had achy body parts (my milk-makers were full and my shoes were not comfortable.) As it was getting late and I was falling asleep, Sean began reading The Cat in the Hat, which I don’t think he finished.

After languishing in the one chair that was in the room (Sean hated this particular chair because it doesn’t recline like the other type of chair we usually see in the room) and complaining to Sean that it was getting late and I’m hungry, I’m thirsty, I need to pump, they’re hurting, you have work tomorrow, you need your sleep…we finally left around 11 PM.

Once we got to the car, things got emotional. Sean expressed his dissatisfaction with people’s expectations of us as parents to Liliana. How we’re expected to be there every day, how I’m expected to do skin-to-skin care and non-nutritive sucking all the time (according to a sheet tacked up on the nurse’s board which was never explained nor shown to me), etc. It was 15 minutes of us coming to understand each others’ view points. All it boiled down to was that the both of us wanted Liliana to come home.

If Liliana’s feedings are progressing without any setbacks, she should be getting 50 ml right now and hitting 60 ml (2 ounces!) tomorrow. Here’s to hoping she will be home with us this upcoming week!

There are so many posts that I need to write about Liliana, yet no time to write them in. That means it’s time for a list!

• Liliana was born 6 pounds, 9 ounces. No one has measured her length yet.
• If she were to have been any bigger, I would have had a c-section. In any case, I had a 2nd degree tear.
• Two days after she was born, Liliana had the surgery to correct the CDH. They tried doing it thorascopically (with small incisions and a camera for visual aid) first, but as they found out that it was worse than previously thought (I think they found the spleen herniated as well) they did the procedure with a larger incision and regular instruments.
• After the surgery, Liliana is still getting better at breathing. Her ventilator pressures are being lowered per doctor’s orders and the amount of oxygen she’s getting from the machines is also decreasing.

I’m going to go see her today. I have to pump some milk first, get my lunch ready, prepare a bag with all of my pumping supplies and pack all of the frozen milk that I’ve made for Liliana. Then I am out the door to the train station! After a transfer and 50+ minutes of traveling, I should be at the hospital and right next to my beautiful baby girl.

How did we come up with the name Liliana Faith Tapscott?

The naming process started long before Sean and I found out our baby was going to be a girl. In fact, we were throwing names around even before we got pregnant! It was just one of those things we thought was inevitable and we might as well start thinking about it now to see what names we both like. The only two names I remember from this time were Fiona and Raven, both of which I’ve fallen out of favor for.

Sean and I were both hoping our first child to be a boy, so we started looking at boy’s names. I came up with the name Damien, which Sean agreed on, and that was that.

Once we had done the amniocentesis and the results came back, the genetic counselor gave me a call. She told me that there were no chromosomal abnormalities and asked if I wanted to know the gender. I said yes.

After finding out that we were having a girl, we thought about Fiona and Raven (which we had liked before), but the names didn’t seem quite right. Somehow, Sean came up with the name Liliana. Mind you, this is after he came up with the weirdest names I have ever heard. I swear that at least one of them started with an X or a Z.

At first, I thought “Liliana” was too long. I wasn’t fond of Lilian (reminded me too much of Rugrats) but if you shortened it further to Lily, I thought it was all right. Then I found out that my co-worker’s daughter (who is absolutely beautiful) is named Lily, so that was a no go. I sat on it for a while, trying to find a different name, but then it dawned on me that Liliana isn’t too long. It’s perfect.

With the first name secured, it was now time to come up with a middle name. We thought and thought, but couldn’t come up with anything. Then Sean’s brother, Jason, came up with Faith.

Liliana Faith Tapscott.

It worked.