Still climbing...

Hi everyone,

Not really any new updates as far as Lila goes, except that she is still slowly, but surely gaining weight. As of last night, she was 7 pounds, 8 1/2 ounces. She is still such a little peanut, but she is gaining which is all that matters. She has been spitting up a little bit more lately, but her bowels still seem to be working based on her weight gain and how often she is pooping. We have our follow-up visit with the surgeon on Friday so I will have something more to update then based on what he says. Lila is starting to interact a little more and is awake for a bit longer during the day. I think she is already thinking Brody is nuts and is wondering who the "noisy boy" is. Brody has noticed some definite "differences" between Lila and him, specifically during diaper changes...isn't he too young for that to be an issue yet!!!

It's a small world...

Hi everyone,

This has been a very busy week for us as the Pittsburgh Vintage Grand Prix was this week and Brody was very busy "fixing" the "noisy" cars. We started getting Lila used to them and she seems like she will fit right in at the Vintage - she slept through 95% of it and didn't seem to be bothered by the cars at all. Lila has continued to do pretty well this week. She is up to about 7 pounds, 2 ounces. Our home health nurse was a little concerned about her weight gain last week when she only gained an ounce over 3 days and we had another visit to the pediatrician to talk about supplementing/fortifying, but Lila had a much bigger gain by that appointment and the pediatrician wasn't concerned and said she was gaining at a good rate. We will continue to monitor this, but it seems like she ha a least hit the 7 pound mark and hopefully stays over it. 

The title of this post has to do with what a small world Pittsburgh is. As most of you know, my dad is a mechanic for foreign cars. Well, this morning a yellow Alfa Romeo pulled into my dad's lot at work and the owner started saying that he was referred to my dad by a few people. My dad has been fixing Alfas for years so this happens often. While making small talk with the owner my dad learned that the owner was a surgeon down at Children's Hospital. The connection was quickly made that the owner of the Alfa was in fact Lila's surgeon, Dr. Burns! I don't know how much I believe in karma, but I feel like this is our chance to pay Dr. Burns back for the amazing job he did and the wonderful care he gave Lila. My dad never got the chance to meet him in the hospital because he typically checked on her on weekdays in the middle of the day. Dr. Burns even told my dad that Lila's case was a "1 in a 100" case in that her quick recovery and successful introduction and tolerance of feeds is not the norm. It made me realize again how fortunate we are and what a great outcome Lila has had so far. Later, I want to write a list of the things that I think contributed to her success (at least what we had control over) specifically for those reading this who are currently dealing with a pregnancy complicated by gastroschisis, but right now, I need to go get Brody. It is storming again and he really does not like the thunder. Before his bath, he asked me to, "throw the thunder in the garbage," (a direct quote!). 

I'll leave you all with some pictures from our weekend at the Vintage. Lila also got to meet her Uncle Jimmy this weekend and spend more time with her Aunt Barb!

Brody "fixing" his BMW

Driving the golf-cart

Brody and his "BMW"

Making gains...

Hi everyone,

Sorry for the lack of updates - it's been a busy week. Lila has settled in nicely to our house and Brody has done really well adjusting to having a new member of the family in the house (and in his mommy's arms). He loves to kiss Lila and help me burp her and only gets jealous when he wants me to hold him - then he tells daddy to hold Lila so he can be "carrued" (carried) by me. Lila sleeps A LOT during the day and night. I forgot how much newborns sleep! 

She had several weight checks this week and some went well, others didn't. Her first weight check on Monday from the home health nurse had her at 6 pounds, 8 1/2 ounces - a gain of 4 1/2 ounces which we were thrilled about, however, her next check at the pediatrician's put her at 6 pounds, 7 ounces. We weren't too concerned about this loss due to the potential differences in scales, but another check with the home health nurse also put her at 6 pounds, 7 ounces. We bumped up the feedings a little in length of time and frequency after that and her weight today was 6 pounds, 10 1/2 ounces so it worked! I feel like I am feeding Lila non-stop, but that's okay because she is gaining and it's worth it. She is definitely showing signs of reflux (arching back, gagging, etc.) so I am working at figuring out the best times for her to get her Zantac - nights seem to be the worst times for her with a lot of crying and fussing. We are going to elevate her head in her bassinet so hopefully that will help too. I feel like I am trying to do a feeding evaluation on myself!

Here are some pictures of our "big girl" at 1 month. I plan on taking a picture of Lila in this chair every month to see how much she grows from month to month. I did the same thing with Brody.

"Surprise!!!"

Our attempt at an "artsy" picture - did not go so well...

Overall, Lila is doing well and we are just continuing to work towards getting her gain weight. I think this will be an ongoing battle for a while, but as long as her gut continues to work, I can deal with the feedings. 

We took Brody and Lila to the Butler Fair last weekend and Brody claimed some tractors as his own.

It's also "vintage season" with the Pittsburgh Vintage Grand Prix. Brody is already learning how to be a member of the pit crew. He wanted to drive, but we told him we couldn't find the keys. 

Torquing the wheels with Uncle Craig. He did this for all the wheels on 2 cars!

"Mechanic in the making" - he's already sporting dirty fingernails and a grease-covered face!

Hope everyone is doing well and thank you for the continued support!

"Independence Day"

I'm going to steal a line from a friend of ours (Thanks Erin!) and call today Lila's "Independence Day," for reasons other than to celebrate our nation's independence. Today we are celebrating Lila's first full day free from hospitals, monitors, tubes, doctors, etc. It was a wonderful day. I don't think the Fourth of July will ever just be another holiday for us. Lila spent the majority of the day sleeping while we entertained Brody (or maybe it was the other way around). She made her first trip to the Giant Eagle and spent her first afternoon by the pool at my parents' house. I don't think she was awake for more than 20 minutes, but it was so nice just to know that she was right there with us. She slept right through our mini fireworks display. I think she has been desensitized to loud noises already between having to put up with Brody yelling and screaming and the dogs barking all the time! 

Here are some pictures from last night when we watched the "fireworks in the clouds," as Brody kept telling us, and from today. 

Brody and Lila with their Aunt Amy and Uncle Craig:

Brody kept stealing Uncle Craig's hat!

Brave Brody jumping in the pool from the ladder!

Lila slept well last night, although I had to wake her up to feed her which made me a little nervous. We've added some extra feeding sessions during the day so I feel like she is getting enough volume to let her sleep longer at night. She continues to do well with the breast-feeding, but it is obviously much more difficult to know how much she is taking when we aren't using bottles. The surgeon did tell me to treat her like any other baby when we took her home and feed her on whatever schedule worked for us. A home nurse will be coming 1-2 times per week to weigh her starting early next week so hopefully we will know Monday or Tuesday if she is gaining weight. We also have our first visit with our pediatrician on Wednesday so we will at least see by Wednesday how she is doing. We also have a visit with our surgeon scheduled for the end of the month as a follow-up. I think Lila will be followed for at least a year - we will find out more specifics at that appointment with Dr. Burns. 

Just so that everyone can see the progress and changes Lila has made in less than 4 weeks, here is a reminder of how she looked when she was about 12 hours old:

And here she is tonight, after her bath (not too happy at first):

You can see how small her scar (if you can call it that) is. It actually just looks like a regular belly button, if not just a little bigger than normal. Dr. Burns did an amazing job. The bandage is just a regular band-aid covering where they removed her central line. We can get rid of that in the next day or two. We do have 1 picture of her right after birth with her intestines showing which I debated posting, but decided against. If anyone really wants to see it, let me know, but, for Lila's sake, I will keep that non-public and let her decide how much she wants to make that picture public when she is older. The size of her actual defect (the hole in her abdomen) was about the size of a half dollar, a relatively small defect according to the nurses. She did have a significant amount of bowel outside, but that was the only organ that was out. I am still amazed how the doctors were able to fit all the bowel back into her tiny belly. We are so thankful that everything went as well as it did. Thank you again to everyone for all your support and prayers - they truly made all the difference. 

Home, sweet home

Lila made her debut in our house this morning around 11:30am. We were discharged from the hospital around 10am, stopped by my dad's shop, picked up her Zantac prescription which she has to take for reflux, and finally went home. The dogs reacted the same way they did when we brought Brody home - Pudge won't leave her alone, keeps licking her and seems frantic that there is someone new in the house; Lola could not have cared less, sniffed her for 2 seconds and went to find a baby sock to carry around the house (which she later gagged on when I yelled at her and it was stuck in her mouth). 

We are thrilled to have her home and are just settling into our routine. Brody keeps trying to get into all of Lila's carriers (her bouncy seat, pack-n-play, car seat, etc.). Overall, he has been really good with her so far, continuing with all the kisses and hugs. He is very concerned that she takes her "nukie" (pacifier) and keeps trying to jam it in her mouth - we're going to have to work on that! Here are a few pictures from today. I will post the before/after post tomorrow when I get a chance. Tonight we are taking the whole family to see the fireworks!

All dressed up and ready to go home:

Finally home and relaxing in her boppy:

Trying to get some perspective on how tiny Lila is:

Introducing...

A "tubeless" Lila!!!! 

That's right - Lila had her last tube removed today (the central line) and I think it wore her out, she slept almost the whole day. That or all the eating she was doing because she also gained 30 grams!!! That may not seem like a lot, but it is the gain we were looking for and what needed to happen for her to go home tomorrow! Our little "porker" went from a teeny 2.805 kg to a whopping 2.835 kg (about 6 pounds, 4 ounces). Our surgeon said that he wanted to see her gain 30 grams per day so she made the cut. I personally think she gained a little more than that because last night she was weighed with the central line in and tonight it was out so that has to account for a few more grams of gain. Who cares - the important thing is she gained and barring any unforeseen issues Lila is coming home tomorrow, just in time for her first holiday. 

We had a good day with Lila. Tom brought Brody to the hospital after work and we took her outside for about 2 minutes until we realized how cold it was and it was raining. Brody kept giving Lila hugs and kisses. We'll see if those keep up when she comes home and he realizes he has to share the spotlight now. 

Brody also discovered a new "statue" at Children's and kept telling us about its "candle" and "hat." He could not get over how the statue had a pirate on it and so did his shirt! 

Lila's umbilical cord stump also fell off 2 days ago and we can now see where the gastroschisis repair was and how small of a scar she will have. I will post pictures later - I think I am going to do a before and after, but will put up a warning to anyone who is squeamish and doesn't want to see. I want to do it for posterity to show how far Lila has come in just 3 and a half weeks. I am planning on printing out this blog and showing it to her when she is older so she can see how many people prayed for her and loved her before they even knew her. 

Tom is spending the night at the hospital again - I am still on the verge of getting sick and trying to get as much rest as I can before she comes home and I am up all night. I will update tomorrow, hopefully with pictures of Lila at home with all of us under one roof!

Still keeping our fingers crossed

Well the doctors continue to say that Lila might be able to come home on Friday IF she gains weight, which we are having a little bit of trouble doing. She is tolerating her feeds very well with minimal spit-ups and she has been taking all or almost all of her volumes since yesterday morning. She is up to 65 mLs (a little over 2 ounces). I also nurse her for about 2 minutes as well. With all this volume you would think she would be packing on the pounds, but our little peanut apparently has a very high metabolism. She went from 2.825 kg yesterday to 2.805 kg today. I am not too worried about this small loss because she was still on TPN until 6pm last night and, technically, this was her first day off of it so the doctors did expect her to lose a little. Hopefully we will see a gain tomorrow and she can finally come home on Friday. After Lila does come home we will continue with twice weekly weigh-ins at our pediatrician to be sure she is gaining enough weight. We will also have some home-health nurse visits who I think will also be checking her weight, butI don't know what else. 

Tom and I gave Lila her bath tonight and during that we get to unplug her from all the monitors. After the bath she was screaming her head off so I picked her up and started walking around with her. As I was walking I realized that was the first time I have held her where she was not attached to anything and I could move her around wherever I wanted without worrying about reaching the end of whatever lead she was attached to. It kind of hit me that she is 3 weeks old and has only seen the inside of hospital rooms. Hopefully, we will be changing that very soon - maybe we can even start her outside world experiences off with a "bang" literally by taking her to see the fireworks! Tomorrow will be the true test if she gains weight on oral feeds alone. I think I might add a couple minutes of nursing to each feed just to be on the safe side! Keep your fingers crossed for big gains!