Day 44: Still Missing her Morphine

Not much to report today. The team decided to wean Vivienne's morphine again. She's already on the smallest dose they can give her, so today's wean and the next two weans focus on duration. Viv now gets her morphine every six hours instead of every four. The next wean will change the schedule from six to eight hours, and the final wean will increase it to every twelve hours. Small "rescue" doses will be administered on an as needed basis after the schedule is complete. Viv had an okay day overall. She was relatively content until about 6:00pm when she really started feeling the wean. She was showing all of the classic withdrawal symptoms and had another epic meltdown. Her nurse did end up giving her a rescue and she was calm when we left. Hopefully she will end up having a restful night.

Finally calming down after a 45 minute screaming fit. 

Day 43: Oh my GERD

Giving mom a little bit of attitude while rocking her "this girl is pretty amazing" onesie. 

Vivienne is six weeks old today! In some ways I can't believe it has been six weeks and in other ways I feel like it has been six years. Thankfully, Viv had a good day and was pretty content. Her team decided to hold off on the sedation weans for the second consecutive day. I'm assuming they will wean her tomorrow now that she's had a chance to recover from the last round.

The only changes today were related to feeding. Like the vast majority of CDH babies, Vivienne is suffering from gastroesophageal reflux disease (GERD), which allows acid and fluids from the stomach to move up into the esophagus causing heartburn, vomiting, and feeding problems. Viv's team decided to put her on Zantac to help alleviate her discomfort. I'm hopeful that this addition will also make feeding a more positive experience for her.

The other feeding-related change had to do with the breastmilk itself. Viv is having trouble gaining weight, a problem that again is very common with CDH babies since they burn more calories trying to breathe. A whey-based fortifier is now being added to the breastmilk to increase her overall calorie consumption. I know for a fact that we won't be discharged until Viv is consistently gaining weight, so hopefully this does the trick. She lost 50 grams over the past two days and currently only weighs 7lbs 3oz. I think the pictures I post make her look a lot bigger than she actually is. She's definitely a little peanut!

Day 42: Slight Improvement

Vivienne was a little better today but was still dealing with withdrawal symptoms. She was up crying most of the night which exhausted her enough to allow for a few hours of sleep this morning. The crying continued when she woke up, but it was a bit easier to calm her down. Thankfully she seemed to be acting more like her old self by late afternoon. Her team decided not to wean her today and may hold off tomorrow as well depending on how she does overnight. There are three more phases of the weaning plan left. A fourth phase will allow for "rescue" doses as needed once she's off of the continuous dose.

Here's our little peanut during one of her calm/content periods:

Self-soothing with the pacifier. Her skills have improved a lot since last week.

Day 41: Withdrawal is the Worst

It was a tough day for our little Vivienne. Her sedation weans caught up with her and she was very unhappy for most of the day. She cried so much and so hard that she almost lost her voice and when she wasn't crying you could tell that she just didn't feel well. On the bright side, there are only four days left on the sedation weaning plan. I'm guessing the team will decide to give her a break tomorrow and then reduce the dose again on Wednesday. Withdrawal is not fun, and I can't wait for this phase of recovery to be over. Hopefully tomorrow will be a more peaceful day.

Waking up this morning. Unfortunately the day went downhill from here.

Day 40: Sleepy Sunday

Not much to report since Viv spent most of the day like this:

Finally getting some quality time with dad after his week of exile.

She is still doing well without any respiratory support and had a few productive feeding sessions. The only change today was a morphine wean. The doctors will reduce the morphine daily if Viv tolerates it.

In other news, Dave and I are getting all of our discharge ducks in a row. We took the infant CPR class last week and watched a few required videos on safe sleep and shaken baby syndrome. We just have to take the feeding tube course since it's likely Viv will be discharged with one in place. The class will teach us all of the necessary steps for placing and maintaining the tube. Each of us will be required to successfully place Viv's tube before we can be discharged. The whole thing is kind of intimidating, but I'm sure we'll get the hang of it. The only other item on the to do list is finding a pediatrician back home. I already have a list of potential doctors and will be calling their offices this week. Everything is coming together!

Day 39: Room Air!

We are so excited to report that Vivienne is no longer on any respiratory support!!! The cannulas are gone and she is happily breathing room air. They disconnected her around noon and she's been doing great. They will put her back on if she starts to struggle, but it's very unlikely at this point. Dave and I are beyond thrilled. In other news, Viv has been totally weaned off of her Versed. Now we just have to get rid of that pesky morphine which should take about a week if she tolerates the weans well.

The doctors don't like to give a timeline when it comes to discharge, but it's safe to say we are getting close. The drugs are the main thing standing in our way. Feeding is also a concern, though they will send her home with a tube if necessary.

We're in the homestretch!!

Cannula free!!

Day 38: A Few More Steps Forward

Another short update tonight. Vivienne had a good day and was generally pleasant despite yesterday's Versed wean. The team decided to chip away at the morphine today. They also reduced her air pressure from 2 liters to 1 liter. She did great with that change and didn't even seem to notice the difference. Viv also had several successful feeding sessions, taking about 16 milliliters over 3 attempts. Obviously we have a long way to go, but it's exciting to see her learn and improve.

Finally, here is a short video of Viv enjoying some time in her Mamaroo. Admittedly, I was pretty jealous of her cozy set-up. I could've used a swaddle and a swing this morning but had to settle for a latte instead.

Day 37: More of the Same

Tonight's blog post is brief since Viv had another quiet day, and I'm having trouble keeping my eyes open. Vivienne was a very alert and pleasant baby today. The team decided to wean one of her sedation drugs (Versed). She's on a very small dose now, and it should be weaned completely by Saturday. The morphine will continue to be weaned over the next week or so. I can't wait to have a drug free baby!

I was on my own today which meant lots of quality time with Viv. I finally feel like we have made up for lost time in the bonding department, which is wonderful. I spent the day holding her, talking to her, and comforting her when necessary. Speech therapy came by in the afternoon to assist with her 3:00 feed and taught me a few new tricks. Viv continues to improve with the pacifier and the bottle. There isn't a lot of action these days, but I'm perfectly content spending a quiet day hanging out with my sweet girl.

Day 36: Practice Makes Perfect

"Please don't make me put that bottle in my mouth again."

Vivienne's team decided to give her a day off from the sedation weans so there are no real changes to report. Viv had a good day with a lot of naps and cuddle time with mom. Dave is working again on a part time basis and also has a cold, which means I'm handling the majority of NICU duty. I worked a lot with Viv on feeding today. Speech therapy had a few helpful tips to get her to be more interested in the pacifier (which then in turn helps with the bottle). She really enjoyed the pacifier and took a few milliliters from the bottle. She's getting better at it, but it's going to take a lot of practice and dedication. I'm fully expecting an uphill battle when it comes to feeding - it's pretty much a given with CDH babies. I do think Viv has made some progress and hope her interest in feeding grows as she becomes more comfortable with the mechanics.

Pacifier practice (not her best effort of the day, but she's super cute):

Looking fierce in pink leopard print. 

Day 35: How Far We've Come

Sleeping beauty.

Vivienne had another uneventful day. Like yesterday, she had one mid-afternoon crying fit, but it wasn't as long or as loud. Other than that she slept for most of the day. A few updates: her morphine was weaned again, and I got her to take a few milliliters from the bottle. She also passed her first hearing test with flying colors. She will undergo regular audiology testing until she is 5 due to the connection between CDH and the risk for late on-set hearing loss (the cause isn't really understood).

I have a lot of time to reflect when I'm sitting by Viv's bed. A new CDH baby is moving into our NICU pod, and as I watched the staff bring in all of the necessary equipment, I marveled at how far Viv has come over the past 35 days. This phase is particularly difficult for Dave and I. Viv is taking very small steps each day and the NICU grind is taking its toll. There is light at the end of the tunnel, but we don't know how long it will take to get there. We want to go home, and the day-to-day can be frustrating. Every now and then it's good to be reminded of how far we've come and how lucky we are. Just look at the difference 35 days makes:

Vivienne's necessary equipment as of March 19....

...and today.

Pretty amazing, isn't it?

Day 34: Jekyll and Hyde

Vivienne was back to her normal pleasant self for the majority of the day, but as the title of this post suggests, it wasn't smooth sailing the entire time. No, baby Jekyll quickly turned into baby Hyde and threw a crying fit that lasted for about an hour. Nothing was terribly successful at calming her down. She would stop just long enough to catch her breath before launching into another fit. In her defense she did get her feeding tube replaced (from her mouth to her nose), her cannulas re-taped, and her diaper changed, so she was entitled to a few tears. Generally though she doesn't stay upset for very long, and so it was out of character. I'm sure the loss of some of her sedation had a lot to do with her emotional state. Somehow I doubt her NICU neighbors were very sympathetic as they listened to her test out those newly inflated lungs and healed vocal chords.

There weren't any real changes today other than another small reduction in her sedation. Speech therapy came by to do a quick evaluation and noted that she doesn't really have a strong "suck" (for feeding). She hasn't really made progress on bottle feeds and doesn't seem to be all that interested at this point. There was a short period today when she was feeding tube-free and did show some interest in a pacifier (and was even able to keep it in her mouth on her own). Normally she doesn't want anything to do with the pacifier, so that was good. I think having the feeding tube out of her mouth made her more comfortable. Hopefully we can make more progress now that the feeding tube is back in her nose.

Feeding tube free.

Trying out the pacifier. 

Day 33: Sleeping, Pooping, and Crying

That's pretty much all that Viv did while we were at the hospital today. She didn't want to bottle-feed and when she was awake she was unhappy, which isn't normal for her. In Viv's defense she's being weaned off of two different drugs and was having a rough time. Here's Viv giving me a one-finger salute:

"Dad, if you don't get that camera phone out of my
face I'll give you something to take a picture of. Go
ahead, check my diaper!"

So it wasn't the best day. We didn't make any progress on bottle-feeding or weaning her oxygen, but she didn't need any extra sedation and slept most of the time, which I think is pretty terrific for a one-month-old going through morphine withdrawal. It isn't fun watching your child struggle but this is all part of the normal process of getting better. Viv's recovery is still moving in the right direction, which is what really matters.

On a different note, April 19 is CDH Action Day. Approximately 75 babies around the world die each day from CDH and the amount of money spent on CDH research is pretty small compared to other congenital diseases/defects that occur at a similar rate. If you want to learn more about CDH or even give money to help fund CDH research, here is a link.

Day 32: Slow Saturday

Vivienne is officially one month old today! She has come such a long way in such a short amount of time - it's almost hard to believe! Today was pretty uneventful. There were a lot of changes this past week, and she seems to be tolerating everything pretty well. The team decided to give her an easy day to make sure she isn't pushed too hard too fast. We worked with her on her feeds and her sedation was weaned. Viv did lose her PICC line today, which makes it so much easier to interact with her. Now the only things attached to her are her monitor leads, cannulas, and feeding tube. Additionally, all of the equipment in her room has been removed which is quite a change from where we were just a few short weeks ago. It's been quite a month!

Day 31: Focusing on Feeds

Vivienne had another wonderful day! She is officially off of the high flow cannulas and is doing well on the standard cannulas with a flow of 2 liters. The goal is to wean her to 1 liter and off of all oxygen support (she was at 22% when we left - room air has 21% oxygen, so she's very close). Viv also had a follow-up echocardiogram today. Everything looks great and her pulmonary hypertension has been greatly reduced. In addition, her sedation has been stopped using the pump and will now be administered orally via her feeding tube. This means her PICC line can come out soon (possibly tomorrow). The PICC has been very useful/necessary to administer drugs, nutrition, etc., but it also increases her risk of infection, so it's good to remove it as soon as it's feasible.

Our main focus today was on feeding. Oral feeds are possible now that Viv is on the standard cannulas, so we did some non-nutritive breastfeeding (which is more of an introduction than an actual feed). We also attempted to feed via bottle which went pretty well. Viv doesn't know how to suck, swallow, and breathe because she's never had to do it for food up to this point. Basically she has to reconnect with her natural instincts since her first month of life has been anything but natural. She ended up taking 10ml of milk via the bottle without incident. We'll continue to attempt to breast and bottle feed until she can hopefully transition off of the feeding tube for good.

Dave getting some pointers from the nurse.

Obligatory cute baby pic. 

Day 30: Exceeding Expectations

Vivienne continued to make steady progress today. Her high flow cannula was weaned from 5 liters to 3 liters. They plan on weaning it down to 2 liters tomorrow, and if she does well, they will switch her over to the regular cannulas. This is pretty exciting stuff considering she's only two weeks post-op and has been extubated for less than a week. Yay for large-ish mostly functional lungs! Viv has also met her current feeding goal and is taking 60ml every three hours. The feeds will continue to increase based on her weight, but for now she'll be holding at 60. We will attempt bottle feeds and breastfeeding once she is on the standard cannulas. Hopefully she'll be a quick learner! 

Viv's doctors are very impressed with her progress and have told us multiple times that she is exceeding all expectations. We are starting to think that we may get out of here sooner than we originally anticipated (though we understand we're at Viv's mercy). Our nurse today had us check off a few items on the discharge to-do list such as watching a few educational videos and signing up for infant CPR. This is a sign that things are moving in the right direction, and we couldn't be more pleased. We're so proud of our daughter and can't wait for the day when we get to bring her home!

Bows!

All dressed for the day. We can't cover her left arm due to the  PICC line (peripherally inserted central catheter) that delivers all of her meds. Hopefully it will be gone in the next few days.

Day 29: Recommended Viewing and More Progress

PBS just completed a three-part documentary series entitled Twice Born - Stories from the Special Delivery Unit. It follows several pregnant mothers who elected to have fetal surgery at the Children's Hospital of Philadelphia (CHOP) in an effort to improve the prospects of their unborn children. Here is a description of the show from PBS.org:

Step inside the groundbreaking medical frontier that is fetal surgery with Twice Born, a gripping PBS mini-series that takes an intimate, inside look at the Special Delivery Unit at The Children’s Hospital of Philadelphia where rare surgeries are done on babies still inside their mothers’ wombs.

With exclusive access to the elite unit, (where the production crew was embedded for 15 months), you’ll live with the expecting parents who all face a gut-wrenching decision: should they take a leap of faith to repair birth defects with pre-natal surgery, even if it means they might lose their child? You’ll experience rarely seen, real-time footage of operations on the fetus. And, you’ll gain a window into the inner lives of an unusual team of doctors who have defied skeptics and chosen to pursue this high-risk/high-reward career path. Twice Born serves up both arresting human drama and astonishing medical science.

Viv's surgeon, Holly Hedrick, is one of the doctors who is profiled and most of hospital staff in the program are people that we have been treated by or have interacted with. The program shows all the places that we have been spending time over the past few months, including the Special Delivery Unit (where Viv was born) and the NICU (her current home). One of the moms profiled on the show was staying at the Camden Ronald McDonald House and they have some footage of her in the house and commuting to the hospital. Obviously we didn't have fetal surgery so the subject matter isn't entirely relevant, but there are definitely some parallels - the initial consultation, the testing, the uncertainty, etc. The series captures the reality of dealing with a birth defect diagnosis and showcases the amazing facility and team at CHOP.

The series is available at http://www.pbs.org/program/twice-born/.

Now onto Viv....

Our little lady had another great day! She's officially off of the CPAP and is now on a high flow cannula. Her feeds continue to increase every three hours and her morphine was weaned. Dr. Hedrick (her surgeon) stopped by to say hello and noted that Viv is exceeding everyone's expectations. We love our little overachiever! Not much else to report today...on to the pictures!

Sporting a super cute headband! 

"Stop taking my picture, mom!"

Day 28: Smiles!

Vivienne had another great day! Her CPAP pressure was weaned from 7 to 5. The goal is to have her off of the CPAP and transitioned onto the high flow cannulas by morning. Yay! The same weaning process will continue once she's on the high flow cannulas. From the high flow she'll be placed on regular cannulas and then will (hopefully) transition to breathing room air on her own.

Her feeds were increased every three hours throughout the day. There has been some discussion of extending her feeding tube into the intestine (NJ) to allow for larger feeds, but for now it seems like they are content to stick with the stomach tube (NG). I'm sure this will change if she starts having trouble processing the NG feeds. Finally, progress was made with weaning her pain medication.

In other exciting developments, I recorded a short video during one of Viv's alert periods and just happened to capture a smile!

Granted this could have just been gas, but I'm going to go ahead and believe she was happy to see her mommy.

Day 27: Improvement

Vivienne was a much happier baby today. She was very restless and uncomfortable last night but started feeling better this morning. The doctors think the morphine wean really hit her hard. Weaning off of the pain medication will be a difficult and lengthy process. She's basically an addict and has to go through withdrawal. Thankfully, she slept comfortably for most of the day. We held her for about three hours during our visit and were able to calm her during her brief periods of agitation. Viv was also able to keep all of her feeds down, (yay!) and the amount was increased to 20ml every three hours.

Happily, the doctors decided to try alternating between the mask CPAP and the ram cannula CPAP. So now the apparatus will be switched out every few hours. Viv seems so much happier on the ram cannulas. She doesn't get all puffy and doesn't have to deal with the straps cutting into her cheeks. Plus it allows us to see more of her beautiful face, which we just can't get enough of!

Day 26: Adjusting

Vivienne continues to adjust to life post-breathing tube. The CPAP mask isn't ideal and she seems to be a bit uncomfortable. The mask straps cut into her cheeks and cause her eyes to be puffy/swollen.

She does not seem pleased with her current set up.

Wearing the mask also means that her feeding tube had to be placed through her mouth instead of her nose. She has been spitting up more than usual and she continues to gag. The doctors also weaned her morphine today, which I'm sure didn't help ease her discomfort. Despite all of this she still had a pretty good day. Just a few inconsolable crying fits, but who could blame her?

We also received a report on Viv's MRI results. Overall everything looks normal, though the doctor did note the presence of a few old (and very minor) brain bleeds that are consistent with standard birth trauma. One of the bleeds may be related more to her condition, but again, it was minor and the radiologist didn't seem concerned. Basically, Viv's development will be closely monitored while she's in the hospital and beyond to make sure she's hitting the appropriate milestones. A repeat MRI will be ordered if she isn't meeting those milestones. The doctor did stress that everything looks really good considering all she has been through, so we aren't concerned.

Day 25: Bye, Bye Breathing Tube!

Vivienne was extubated this morning! The process itself was quick, but the transition was rocky. Viv's team decided to put her on a CPAP. Like a ventilator, the CPAP is able to deliver air pressure; however it doesn't breathe for her. Viv was guaranteed 20 breaths a minute on the ventilator, but she's on her own now. The team will be monitoring her respitory rate to ensure she's not working too hard. There is still a slight chance of having to intubate her again if things don't go smoothly, but it is unlikely (knock on wood).

The moment of extubation was both exciting and scary. We hoped she would do well, but she did end up having some issues. Her breathing was labored at first and she was having trouble dealing with her secretions. Viv has always had a lot of secretions in her mouth and lungs and required a lot of suctioning when on the ventilator. Now that she's extubated, she has to deal with those secretions on her own. This was problematic since she never really learned how to swallow. The first few hours after the tube was removed were full of choking, gagging, and crying.* Eventually she seemed to get the hang of it and was able to calm down.

The team decided to initially put her on a ram cannula CPAP:

Yay for being able to close my mouth and see my face!

However, her inability to calm herself and deal with her secretions led them to switch over to a mask CPAP:

Just kidding about being able to see my face, but I can still close my mouth!

Obviously the ram cannula is the more fashionable and comfortable option. Viv wasn't a huge fan of the mask, and it took her awhile to get used to it. Hopefully she can quickly wean off of it in the next few days and get back to the cannulas.

Eventually the CPAP will be replaced by regular high flow cannulas until she is either completely weaned off of all support or is sent home on oxygen if she can't be weaned completely.

Overall it was a very exciting day, and we think Viv enjoyed life without the breathing tube once she figured things out.


* Her vocal chords and throat are swollen, so she won't be able to vocalize fully for a few days. She sounded like a quiet frog during her many crying fits, though she was able to let out a few adorable coos during her happy moments. 

Day 24: Moving Right Along

It was another enjoyable day in the NICU. Vivienne's feeds were increased to 15 ml. and her pain medication continued to be weaned. Mom and dad both got some quality cuddle time in which is always a treat. Additionally, we're excited to report that Viv has been upgraded to a crib! Exciting stuff. 

In other news, Vivienne had her MRI this evening, but we won't get the results until tomorrow. She did well and only needed minimal sedation. 

Extubation is planned for tomorrow. Hopefully nothing happens to cause a delay. We are so ready to say goodbye to the breathing tube!

Hanging with dad.

Quality time with mom.

New digs!

Looking all cute in her new crib.

All ready to be transported for her MRI.

Day 23: Chipping Away

It was a pretty quiet day in the NICU. Vivienne continued to make slow but steady progress with ventilator and pain medication weans. Her feedings have been going well and are now at 10 ml. every three hours. She also got a bath overnight, and we were able to dress her in a onesie and swaddled her for the first time. Unfortunately she is still intubated. The doctors decided to order a MRI while she's still hooked up to the ventilator (just to make sure everything looks normal with the brain - they do it for all CDH babies). The MRI should happen tomorrow, and extubation will be a possibility after that.

Baby burrito! 

Cuddle time with mom.

Tomorrow marks one week post-surgery. Viv really looks great, and we're so pleased with her progress. Dave spoke with another CDH mom today who has been here for seven months. Things can be frustrating at times, but we certainly realize how good we have it and are very grateful.

Day 22: More Milestones

Well, Vivienne is still intubated, but today was still full of important milestones. After waiting three weeks, Dave and I finally got to hold our baby girl!

We each held her for about an hour and a half. The breathing tube makes things a bit difficult, and there were a few moments of discomfort, but overall it was an amazing experience. We can't wait to continue bonding and look forward to being able to cuddle her without all of the tubes and wires.

Vivienne did trade in one tube for another today. Her drainage tube (inserted through the nose into the stomach) was removed and replaced with a feeding tube. She received her first "meal" (5 ml of breastmilk) this evening around 6:00. The contents were still in her stomach when we left around 7:00 and she's set to be fed every three hours. Hopefully she keeps everything down and doesn't have too many issues. We shall see!

Viv sporting her new accessory.

In other news, the doctors continued to chip away at Viv's pain medication, and they turned off her nitric oxide. She wasn't thrilled with these changes but did well overall. We're hoping they can continue to wean the ventilator tonight and tomorrow morning. Extubation is still on the table; Viv is right on the edge. Hopefully she's able to get over the hump very soon!

Day 21: Nothing Much Happened

That's not entirely true. They weaned a couple settings, mom got to change a poopy diaper (I assisted but I'm still an apprentice diaper-changer) and we took a nice walk around the Penn University campus, but compared to the last couple days of rapid progress it seemed pretty slow. Tonight they are planning another wean and if she's still doing well in the morning they are talking about extubating her.

This is what most of the day was like:

There are many worse alternatives than having a boring day in the NICU, so all in all things are still going very well. With that said, we are hoping that Viv takes another big step forward tomorrow!

Day 20: Houston, We Have Poop

Vivienne continued to kick some CDH butt today. As the title of this post suggests, Vivienne's bowels are now functioning. In fact, she pooped three (!) times today. This is a big deal for a CDH baby. Not only does it mean that we are one step closer to feeds, but it also means that everything is in the right place and functioning properly. I'd like to take this opportunity to apologize to future Vivienne for writing about her bowel movements on the Internet, as I'm sure she'll be less than thrilled about that one day. Oh well, it's just another thing she can hate me for during those teen years.

In other exciting news, Viv's ventilator settings are now down to 20 and extubation may happen as early as tomorrow! This means we won't have to watch her choke/gag on the tube anymore (thank goodness). It also means she will be able to vocalize and cry. Hopefully they are able to continue to chip away overnight and tomorrow so she can be tube-free ASAP!

Day 19: Happy Easter!

Happy Easter from Viv and all of her friends!

Vivienne continued to impress her doctors and nurses today. Her ventilator settings have been weaned from 45 to 30 (10-15 is the goal for extubation) and she tolerated a reduction in her morphine. She had a very peaceful day and allowed mom and dad to take a few Easter photos without protest. Everyone in the NICU thinks Viv is so laid back, and we would have to agree. She really is a trooper!

We're looking forward to this week. Hopefully we will be able to start feeds soon and lose some of her accessories.

Day 18: Recovery

Vivienne's recovery from surgery is going well. She needed a little bit of extra sedation last night but ended up having a very peaceful morning and afternoon. All of the nurses and the doctors are amazed at how good she looks and how low her settings are. They ended up weaning the ventilator a bit and have completely taken her off of Dopamine. Mom and dad were once again able to participate in her care by taking her temperature, changing diapers, and swabbing her mouth with breastmilk.

Dave and I are hoping tomorrow is another uneventful day so they can keep chipping away at her drugs and vent settings. We can't wait to watch her make progress. There are so many milestones to look forward to!

Day 17: Repaired!

Prepped for surgery with a super cute hospital gown!

Vivienne is repaired! We arrived at the hospital at 6:30am to spend some time with our sweet girl before the operation. The 7:30 start time quickly turned into 9:30, so we had a lot of time to wait around and stew in our emotions. I was a mess when it was time to leave the room. Logically I knew that she was in extremely capable hands, but it was still a lot to handle. The surgery lasted about two hours, and everything went extremely well.

Here's a rundown of what we learned after surgery:

- Vivienne's defect was very large (not surprising) and required a patch to close the hole (also not surprising). One side of the patch had to be attached to the ribs/chest wall, but she had a rim of diaphragm on the other side. Her surgeon said the chance of reherniation is about 3-4%.
- It turns out the the liver was down (very surprising). She had her stomach, small bowel, and spleen in her chest. The spleen was behind the heart, and they think that its presentation caused them to think the liver was up.
- She has a huge left lung (very surprising). Apparently her left lung grew just fine behind all of her organs. In fact, it's actually bigger than her right lung! We don't know how functional it is (and some of the tissue is damaged), but the fact that there is so much of it is really amazing. Viv's surgeon actually had to retract it during the surgery and told us that she's never had to do that before - and she's done a lot of CDH repairs.

Pre-op X-ray. The white area by the left lung (on your right) is Viv's bowel, stomach, etc. The white area on the right (your left) is her heart.

Post-op X-ray. Look at all of that left lung! The oval at the bottom of the lung is her patch. All of her organs are now where they should be. The heart will eventually move to its proper place on the left side.

Now that surgery is behind us we can focus on the recovery phase. The only potential setback would be an infection (a relatively low risk). The patch is a foreign object so there's always a chance that Viv's body could reject it. More than likely though she will be fine. The next few days may be a bit rocky as she recovers from surgery, but her vitals are still excellent and she's currently on minimal support. Her settings will continue to be weaned with the ultimate goal of extubation. Also, she will be given small amounts of breastmilk via a feeding tube after her bowels begin to function in the next few days. Finally, Dave and I will be able to hold her some time in the coming week (yay!!).

All of the doctors are extremely pleased and are very optimistic with regard to Viv's recovery. We are so thrilled and excited. Vivienne is the light of our lives, and we are truly thankful for every moment.

Post-surgery. She has a belly now! Her surgeon is known for her creative bandages and cuts each one out by hand. This one is a bunny and an orchid in honor of Easter.

Waking up! We seriously can't get enough of her.

Thanks to everyone for the positive thoughts and prayers. We really appreciate your love and support!!!