The "h-word"

Today I heard an awesome word that I had been waiting to hear for the past 3 weeks - "home." The doctors had yet to even mention the word, I think, for fear of getting our hopes up and making us think we had a set "deadline," but today they said that if Lila continues the way she is going now, we might be out of the hospital by the end of the week!

This morning Lila's feeds were bumped up to 45 mLs at each feed. I still had issues with this because when I am with her, she is nursing for about 2 minutes and getting more than her "allowed" volume. To me, that means she was tolerating more than what she was being allowed to take in the bottle. Our wonderful surgeon stopped by after her 12pm feeding and I mentioned this to him. He agreed that Lila did seem like she was able to tolerate more than what was in the bottle and upped her feeds to 60 mLs (2 ounces) - her goal volume! He said to continue beginning each feed with a few minutes of nursing, then offer the 2 ounces in the bottle. If she tolerates this volume we will probably stop the TPN tomorrow. If she gains weight without the TPN, then he said we would be ready to go home! Lila has been consistently gaining weight every day, except for yesterday, she lost a few ounces. I attribute the loss to a night of very poor volumes Saturday night - the nurses could not get her to wake up to eat. I really think this will improve when she gets a hunger cycle in place, which will hopefully happen when she gets off the TPN. She is up to a whopping 6.3 pounds. I think a few of the surgeons will be happy when we are out of there so I stop questioning everything. I just really appreciate that our surgeon looks at Lila's progress individually and makes adjustments based on what she is doing and how she is progressing. Many of the other surgeons want to make adjustments based on the "standard protocol" for gastroschisis babies and I don't think that fast progress is made that way.

Tom is at the hospital now giving Lila a bath and her 9pm feeding. We are anxious to get her home so that we can start spending time as a whole family. Tom and I have been doing a lot of "shifts" lately - one of us with Brody, the other with Lila, when Tom is not at work. Our parents have been very helpful by watching Brody or going to sit with Lila so one or both of us can spend some time with Lila. I can't imagine going through this without family close by. I can't say it enough how lucky and thankful we are to have such amazing support from everyone. I'll leave you all with some pictures of Brody on the way to the zoo last week and Lila from this past weekend and today. Brody insisted on bringing his football. You can also see his spiked hair, which he insisted I do and the remnants of some chocolate on his face. We had a good day!

Lila checking our her daddy:



You can just see Lila's central line in the following picture (under her right arm) which is what he gets the TPN through and is her last remaining "tube." This will be removed right before we are discharged.

Quick update

Just have a minute to update, but wanted to let you all know that Lila continues to do well. She is up to 35 mLs at each feeding. They are also letting me breast feed for about 2 minutes first, then offering the bottle. Lila continues to tolerate the feedings well with no significant throwing up or abdominal distension. I am heading down to the hospital soon to give Lila her 9pm feeding. I am getting a little frustrated at the weekends in the hospital - they don't like to change much as far as feed volumes, TPN numbers, etc. One doctor went so far as to say that Sunday is a "day of rest" - as far as I'm concerned, there is no "rest" until she comes home. Hopefully, that will be happening soon. I have been badgering the nurses about decreasing her TPN, which they agree with, so that Lila can establish some form of a hunger cycle - right now she doesn't seem to have that yet because she is getting so much by mouth and through her TPN (which is continuous). I have been spending too much time with the dieticians at work! I am hoping that they decrease the amount of time she is on TPN in the next day or so and she can start to feel hunger which will help with feeding. I'll post some new pictures tomorrow when I get a chance. Thanks again for all of your support!

Our Steeler baby...

Lila went up to 10 mLs per feed today (1 feed every 3 hours) and did well with that volume - no throwing up, burped after each feed, and pooped again. Dr. Burns, our amazing surgeon, stopped by again today to check on Lila and continues to be very pleased with her progress. He agreed with the nurse that it would be okay to increase feeds faster than 5 mLs per day. Dr. Burns said that he would put the orders in for an increase to 15 mLs tomorrow, then, if she tolerates, bump up the volume to 30 mLs (1 ounce) the next day. He also said that if she tolerates the 30 mLs, I would be able to start breast-feeding. We are really crossing our fingers that her feeds can increase at this rate. Here are some pictures of Brody "feeding" his sister. I like Lila's expression in the first one - it's almost like she is saying, "Get him away from me." I think she is going to have to put up with a lot from him!

Lila's other big news is that she got Jerome Bettis' autograph on her Terrible Towel! The story goes that we found out about Lila's gastroschisis the morning after the Superbowl (that the Steelers won!) this year. The following weekend, Tom and I went out and got a Terrible Towel for the baby, planning to hang it from her isolette in the NICU. Well, as luck would have it, Jerome Bettis just happened to be speaking about an asthma camp he is sponsoring today at the hospital and we just happened to have Lila's Superbowl Terrible Towel in her room. I got lucky enough to catch Bettis as he was leaving and got his autograph on the towel and a picture of him signing it to prove it! I don't think we will be letting Lila take this towel to games - we plan on framing it for her.

It was a big day all around because Brody also met the Pirate Parrot and gave him several high-fives (didn't work up the nerve for a hug). He got a stuffed parrot and an autograph from a Pirate's pitcher (I can't remember who it was). Hopefully our good days continue and we get to bring Lila home soon!

First "real food"

Lila had a big step today in her road to come home - she got to "eat" real food today (i.e. pumped breast milk). She was allowed to have 5 mLs every 3 hours from a bottle and has tolerated it well so far. If she continues to do well with that amount throughout the night her feeds will be increased to 10 mLs each time tomorrow. The surgical nurse explained to me today that the typical schedule is for her feeds to increase 5 mLs each day as Lila tolerates. Several people (2 surgeons, the surgical nurse, and our nurse) all stressed to me that this is a slow process and often there are "bumps in the road" so no one is giving us an idea as to how much longer we will be there. Lila needs to reach her "goal" volume which is calculated based on her weight, calorie needs, etc. and take it for 3 days before she will be discharged. The surgical nurse estimated that her goal volume might be between 60-80 mLs so based on the 5 mL increase per day, saying there are no setbacks, we are looking at 2-3 more weeks. Our nurse said that often they will increase more than 1 time per day once Lila is taking higher volumes so we are hoping that is the case and we have a shorter stay remaining. We forgot the camera at the hospital so no pictures today, but I will try and post some tomorrow. 

One step closer...

I hope I'm not being premature in writing this post, but we definitely had better days yesterday and today. Thank you to everyone who kept us in their thoughts and prayers that that would be the case. Lila did well yesterday with her NG tube on gravity and hardly had any volumes come out of it, most of which was just spit. She did so well that they took her tube out again today and she has done very well so far. We are keeping our fingers crossed that she continues to do well throughout the evening with no throwing up. If she does, we will probably start oral feeds tomorrow morning. I don't know if I am getting my hopes up too much, but I have a better feeling about today than I did on Saturday. Lila just looked much more peaceful today and was very pleasant all night last night and today. She also pooped again and has been passing gas which is also a good sign that her intestines are starting to work. Again, sorry Lila, but these are the things we are excited about right now! I really hope I don't have to post on here again tonight that there were more setbacks and can post tomorrow that she had her first "real food." Thanks again to everyone for your support!

Here is our "tubeless" (at least on her face) baby girl:

The red marks are from the adhesive tape that was holding her NG tube in place.

Setbacks...

So Lila had her NG tube removed today...for about 12 hours. It was removed this morning and she did fine all day, but then threw up this evening and the nurse thought her belly looked "a little full." They put the NG tube back in and got about 12 CCs of green liquid out so it doesn't look like her intestines are working yet. The doctors also wanted her placed back on suction again, at least for tonight so we are back where we were 2 days ago again. Obviously, this was a big disappointment because I thought she was doing so well today and it was so awesome to see her whole face with no tubes or wires in the way. This is definitely one of my low points right now - we just want to bring our baby girl home. Right now it just feels like our family is in this limbo area - having one child at home and the other in the hospital, with no idea of when our family will be complete under one roof. Hopefully tomorrow will be better...

New digs...

So our move to the new room turned out to be a more positive thing than I thought it would be. The room is really nice with a private bathroom, sleeper sofa, and Lila is now in a crib instead of the isolette, which looks much less medical to me. The other nice thing the room has is a door which really helps in keeping Brody in and keeping the other patients from hearing his screams. While the nurses aren't as constantly available as they were in the NICU, I did feel like they were taking good care of her today and were on top of everything going on with her.

The biggest news for today is that Lila finally pooped! We have been waiting for this because that is a good sign that her bowels are working. I have never been so happy to change a diaper! Lila is probably going to hate me for broadcasting this to everyone when she is older, but hopefully she'll realize what a milestone this is and forgive me. The other good news from today is that they did put Lila's NG tube to gravity (no suction on it) and she tolerated it well all day with no swelling in her belly, throwing up, or irritability. If she continues to do well overnight, they will probably take the tube out tomorrow morning. It will be so nice to see her face without any tubes - that will be the first time I get to (they dropped an OG tube in her before I first held her after she was born). If she tolerates no tube tomorrow, we can probably try to feed her the next day (Sunday) which I think will be an awesome Father's Day present for Tom.

Brody visited his Uncle Craig at baseball camp today (Craig coaches) and insisted on wearing a helmet around the entire time. He was mesmerized by the kids playing baseball. I think we might have a future ball player on our hands, as long as he is allowed to wear a helmet.

2 steps forward, 1 step back...

Well, I should not have gotten my hopes up about the NG tube being removed today. Lila had a fussy night last night and the doctors wanted to be sure it wasn't because her tube was on gravity so they put her back on suction today and will reevaluate tomorrow. She continues to have almost no volumes coming out of the tube and what does come out is almost completely clear so hopefully tomorrow we will be going to gravity on her NG with possible removal the next day. 

The other news is that Lila is moving floors to a regular inpatient room, actually right now. While this has been mentioned, we originally thought that would be after she started oral feeds, but apparently Children's has a few admissions coming tonight and they have no more beds. Lila is on the top of the list to move because she is so stable. While I am happy that she is so stable, I don't know if I really like the idea of her moving because she would otherwise be staying in the NICU so is moving her the best plan? The ratio of nurses to babies in the NICU is 2:1 while on the other floor it is, we think, 5:1 - definitely higher and Lila will not be getting the amount of individual attention she has been getting. My mom and I are going to go down to the hospital now to see what's going on with her and where her new room is, and to see if I feel like I need to stay with her now. 

Day 7 in the NICU

Hi everyone,

Sorry for the lack of updates, but not much has changed over the past few days. Lila still has only two tubes (the one in her nose and her central line). Her OG tube (mouth to stomach) was switched over to an NG tube (nose to stomach) yesterday morning after she pulled the OG all the way out. This made me pretty happy because I wanted that tube out of her mouth so that she can practice sucking on her pacifier. She also seems much more content with the NG tube, rather than the tube in her mouth. She is no longer being given any pain medicine because she is able to calm herself on her own or by being held quickly when she is upset. She is more alert and awake every day. The liquid being drained from her stomach continues to get lighter and lighter every day, and seems to be totally clear at times. The amount of liquid being drained has also been decreasing as the days pass. Both of these are signs that her bowels are beginning to work and that she is headed in the right direction. Earlier today Lila's surgeon stopped by and decided that suction was no longer needed and that her NG tube could be switched over to gravity only. This means that more fluid will go down into her intestines. If this goes well for the next day or so, then the tube will be removed all together - we are hoping this is the case and Lila might be close to tube-free tomorrow. Assuming that she does well and the NG tube is removed and she tolerates that for a day (no throwing up, bringing up bile), we will start oral feeds the next day. 

Dr. Burns (the surgeon) continues to be very pleased with how she is doing. He has been fantastic all through this and stops in to check on Lila frequently. We also learned that once Lila starts oral feeds, she might be able to move down to an inpatient room with less restrictions and more freedom since she isn't "sick enough" for the NICU (according to one of our nurses). This was good to hear that they think Lila is moving in the right direction too. I will update more as soon as we know anything else, or anything changes. Right now we are trying to get Brody to bed - he is afraid of the thunder and keeps screaming that he "doesn't like it." Thanks again to everyone for thinking of us!

Here are some more pictures of Lila - I realized when I was picking them out that I really need to take more. I will post some tomorrow of her without the oxygen or the OG tube so you can see more of her face!

We are trying to keep Brody's schedule as normal as possible and still trying to spend "fun time" with him. We took him to a local park last weekend and he had a ball. He gave Tom some exercise, demanding that Tom "more spin" him on the spinner. 

The weekend before Lila was born we took Brody to Living Treasures Animal Park which was so much fun. Brody got to feed deer, goats, monkeys, pigs, reindeer, llamas, bears and even pet a baby zebra!

One tube at a time...

Hi everyone,

Well we're pretty much keeping status quo for now. Lila continues to do well as far as her vitals are concerned and no issues have come up with her intestines except that the bile continues to drain from her OG tube which Lila does not like. She seems to get pretty irritated with it and often pulls on it when she is awake, which at this point, is not too often. Lila is now down to having only 2 tubes, the central line and her OG tube. They removed her nasal cannula yesterday so we can finally see almost all of her face. The OG tube pushes down on her lips so that's the only part of her face that we can't really "see" yet. They also removed both IV lines that she had in each of her hands - neither was any good anymore so they will just use her central line if they need IV access. 

We have been spending basically all day at the hospital all week, but took the morning off this morning to take Brody to the park (I'll post pictures later). We needed to do something fun with him and being at the hospital with him is definitely not very fun. The 2 sibling centers that the hospital has won't be open until the fall so there is a very limited amount of places for him to play. Tom is going back to work tomorrow so we are going to have to figure out how I will split my time between Brody and Lila, but it will be easier thanks to our families. I will post more pictures of our baby girl soon - just have to get around to uploading them. Right now Tom and I are going to fold laundry because Pudge no longer has a spot to sleep on the couch due to the overflowing pile of it. 

Love you all,

Tom, Emily, Brody, & Lila

Breathing on my own!!

Hi everyone,
We hit one major milestone this morning - Lila was taken off the ventilator and is doing very well breathing on her own! She only has a nasal cannula that is giving her a little bit of oxygen which should be removed within the next day. Tom and I have both gotten to hold her since she was taken off the vent which we were thrilled to do. As soon as I first held her, she opened her eyes and looked around as if she was saying, "This is new - I'm not in a bed anymore." That was the most I have seen her awake since Tuesday night and it made my day. We have also finally gotten to hear her cry, which is a welcome sound. Up till the tube was removed she could not make any sound and it broke my heart to see her get upset, but unable to make a sound. She has been making little goat noises while she sleeps for the past 2 hours and I love listening to it. Tom doesn't think she sounds like a goat, but I do. Her belly continues to look better too which is a relief. It has been pretty swollen and red since Wednesday, but looks less distended today and the surgeons agreed that it looks great. So our next goal is for her OG tube to run clear so that we can start feeds. We don't really have any idea how long that will take, but hopefully not too long. Here are some pictures of Lila that I finally got around to uploading...

Immediately after birth, right before Lila went to Children's for surgery:

Morning after surgery:


First family picture, day 3:


Brody checking out who he is going to have to share toys with:

Before extubation:

After extubation, holding Lila for the first time since birth:

So much happier:


Daddy holding Lila for the first time:

Day 2 in the NICU

Hi everyone,

Not much to post today...Lila continues to do well as far as everyone can tell. She started TPN today  - up till that point she was on a dextrose solution. The TPN will provide her nutrition until she can begin oral feeds when her intestines tolerate. She is still intubated and we are just waiting until the doctors feel that she is ready to be extubated. We thought that might be today, but they don't want to extubate too early. Right now with the tube, she can have more pain meds without having to worry about her respiratory function being depressed. When they take her off the ventilator, they will not be able to give her as much because she has to stay at an alert enough state to adequately breath on her own. She has been breathing over the vent rate for over 24 hours, but they are still being cautious and thinking that maybe tomorrow they will try to wean her from the vent. Her NG (nose to stomach) tube turned to an OG (mouth to stomach) tube because the NG was not being very effective at draining the bile from her stomach. We are still waiting for that tube to drain clear until we can introduce oral feeds. I am not spending the night at the hospital yet, but will probably do so when she is extubated - we'll see how Brody is doing too. He seems to like his sister and talks about her "boo boo" on her "tummy." He even threw her baby doll at her 2 times this morning. She is going to have to learn to be tough around him! Hopefully I'll have good news to post tomorrow that we get to hold Lila - we'll see!

Road to recovery...

Hi everyone,
First I want to give a big thanks to Jackie who has been posting all the updates for us - thank you so much. It was such a relief to know everyone was staying informed without us being on the phone all day. Next I want to thank everyone else for all of your thoughts and prayers - they are working and we are in what our surgeon said was a "best case scenario" right now. Lila gave us a run for our money during the induction, taking her good old time to meet us despite me being on Pitocin for 18+ hours, but I am convinced she just wanted to pick her name for us. We went to the hospital with 3 names we liked, planning to pick when we met her. Well, she made it easy for us to pick - Lila means "born at night" and "dark haired beauty." I said I only wanted to use that name if she was born at night (not something we anticipated based on when my induction was started) and so she made it easy when she decided to make her appearance. Rose was Tom's grandma's name so that is how the middle name came about.

I was discharged this morning and made my way over to Children's with Tom's parents and Brody where Tom had spent the night. Lila continues to do well in that her abdomen is not too swollen or distended. She is still intubated so a machine is breathing for her, but that is the first goal to get her off that, hopefully within the next 2 days. She will start on TPN tomorrow (the IV feeds) through the central line that was placed during her surgery. Our surgeon, Dr. Burns, was fantastic (thank you again Ann Marie) and has been great at communicating everything that is happening/going to happen with us. He even called me from the operating room last night at 2:30am to tell me he was able to do a primary repair. So far, everything has been going in our favor and we pray that continues as Lila makes all the steps she needs to come home. Before we can start oral feeds, she needs to show us that all the bile has cleared from her stomach/intestines by having her naso-gastric (NG) tube run clear, meaning that everything is moving downward in the right direction instead of coming up. We don't know when that will be, but we are hoping soon. We will be able to hold her again once she is extubated so we are anxiously awaiting that. I will post pictures as soon as I can upload them to a computer.

Thank you again to everyone - we can't say enough how much all the support has meant to us.

Love,
Tom, Emily, Brody, and Lila

Lila's surgery

Lila had surgery last night and they were able to perform a primary closure (where they put all of the intestines back in the abdominal cavity) instead of a staged closure(where they take multiple surgeries to complete the closure). Lila is on a ventilator because she is sedated and because the intestines put increased pressure on her diaphram. A primary closure is good because now the risk of infection is reduced. Tom was at Children's all night. At 9:30am Emily was just about to be released from the hospital and will be able to go over to Children's hospital too.

Thank god that the progress made so far has been good.

Welcome Lila Rose Torchia!

Lila Rose Torchia was born at 9:27pm. She arrived with dark hair and dark eyes. The meaning of the name is "dark haired beauty." She weighs 5 lbs 13 oz, no length was taken. It seemed like things were progressing really slow then all of a sudden Emily was ready to push and she only really pushed for 5 minutes and Lila was here. Her apgar score was 5 in the first minute and then was changed to 9 (for those who are familar with this measure)

At first when Lila was born she wasn't fully breathing and her color was very poor, but soon after her color improved and she began to cry. Emily and Tom got to hold her for a few brief minutes and then she was taken down to the NICU. She is going to be transferred to Children's hospital and may undergo surgery a few hours from now.

Emily is doing well and most likely will be released tomorrow. Tom is going to go with Lila to Children's.

All things considered a successful delivery...hopefully the upcoming surgery will go as well.

Update at the Pens period break

Last word at 8:00pm was that Emily was 5cm dilated and things were starting to progress. Emily has gotten an epidural and it went a lot better than last time with Brody. A definite lowpoint in the afternoon was that Brody was not allowed to come for a visit because childen his age are not allowed in that part of the hospital. Emily will not be able to see him until until after the baby is born and this is the longest they have been apart since he has been born.

The waiting and worry has been difficult. Hopefully the next few hours will be very positive.

Fingers crossed and prayers in mind as always.

Go Pens!

Still waiting....

Posting an update for everyone on behalf of Emily:

So this little one is taking her time! Emily and Tom have been at the hospital since 11pm last night. Emily has been receiving doses of pitocin to help the delivery along, but so far she is only 3 cm dilated. She wasn't able to sleep all night and has been limited to a clear liquid diet so a little bit of crankiness is starting to set in. However, Tom and Emily's parents are there to keep her company and hopefully things will start progressing faster soon. Brody is with Grammy and Pap Torchia and might come for a visit later.

Emily is starting to wonder if the doctors are Penguins fans because they may need to start changing their plans for tonight!

Change of plans....

Well, it looks like things have changed a bit as far as when we will meet our baby girl. I had an ultrasound this morning (weekly bio-physical profile) and while her movement and fluid levels looked good, her intestines have continued to dilate even more. Last week they were measuring at 1.9 cm at the largest point and today the doctor measured 2.3 cm which they felt was a significant jump. Based on this they decided to do an amniocentesis today rather than wait till next Tuesday, as was originally planned. The amnio results showed that the baby's lungs are mature so the plan is to start induction TONIGHT! Basically, the doctors said that there is no benefit to waiting a week since her lungs are already mature and we will hopefully not be dealing with any prematurity issues and better to get her out to prevent further damage to the intestines. 

This definitely came as a shock, but we feel like this is the best plan and we are looking forward to meeting our baby girl probably sometime tomorrow around mid-day if everything goes well with the induction. Tom and I will go to Magee tonight, most likely between 9pm-12am and they will start me on meds to induce labor. We would appreciate any good thoughts and prayers any of you could send our way as we meet our baby girl and start on her road to recovery at Children's. I will continue to update here as I can, or will have someone else update if I can't get to a computer. Thank you all again for all of your support - we are truly fortunate to have such wonderful family and friends.