Triston's First Science Fair Project

We all had a great time working on this project. Triston colored the volcano, chose the pictures and decided what he wanted to share about volcanoes. There was even glitter on the lava flowing up from inside the volcano. Mom and Dad helped him with some typing and printing from the computer.

Emma's Surgery Follow Up

We were so good at documenting Emma's time in the hospital, but now that we are home it has been much harder to stop and blog. Emma healed quite a bit in the hospital, but she still had a ways to go when she got home. She was still in a lot of pain and needed the Lortab for a couple of days, and then Tylenol and Advil. Much of her struggle was in the emotional department, however. She hated her crib, the changing table and pretty much anywhere that reminded her of her stay in the hospital. Even if she was completely asleep when we put her down, she would wake and scream in terror. I took away anything that reminded her of her stay, including toys, blankets, and anything that was present at the hospital. I also started using a new lullaby CD. It took about two weeks for her to get used to her crib again. Now she is sleeping in it again and not afraid.

We got great news when we took her to her surgery follow up appointment two weeks after her discharge from the hospital. She looked great, was healing well, and has a great prognosis for the future. We were told it was finally time to let her just be a kid! Her defect was successfully repaired, with the exception of severe regurgitation at the pulmonary valve. That valve is a wait-and-see situation. She may need a replacement as early as five years old or as late as 30 years old. They will watch the ventricle size, as it will stretch and get bigger over time because of the blood leaking back into it, when it gets too large they will need to operate. If she is full grown by the time a replacement valve is needed, it will most likely be put in with a catheter through the groin, if she is still growing it will be open-heart once again.

But for now, Emma is a kid--a kid that will find her own limitations and not be limited by us. We have been thrilled to bring her out into the wide open world! She can be a little shy because she was inside for the first six months of her life, but she is really a little flirt at heart. In the hospital, she would put her arms over her eyes and hide from new people. Now she does that less and less. She has no restriction on her due to her heart defect and she is on no medications.

Starting today, her sternum is healed enough to pick her up under her arms once again. That took six weeks. We are also loving seeing normal baby stuff; she is teething and has one lower tooth already through, and she is getting over a nasty cold that ran through our entire family. Emma loves her baths, and splashes like a mad-woman in there. She loves big brother Triston and Daddy and Mommy.

Oh, EKG's don't hurt! I wonder if I can pull all these cords out of the machine?

Memorial Day Fun at Grandpa and Grandma Shannon's Pool

Triston being tossed by Uncle Riley and his friends

Swimming fun with Uncle Kyle

Emma Chillin' Poolside


Crinkle Nose




Not sure what to think of grass





Beautiful baby!

Take me out to the ball game!

We went to the Bee's Game with Triston's team on Friday, May 15th. He got to go on the field, and stand at the microphone and say his name and the position he plays. He was so excited! He also got a baseball autographed by the player he went on the field with and Bumble, the mascot.

After they got off the field, he got a tour of the stadium by Bee's employee. The guide told them that they need to stop playing video games and get out and practice baseball. On the way home Triston said: "I am not going to play video games anymore, I am going to change my life and just watch TV." Proud moment for his parents for sure!

Surgery Update 26 - HOME!

Our sweet little Emma came home today.  She was formally discharged from Primary Children's at around 11:00 a.m.  What a joy it was for us to bring her back home, knowing that her once- defective heart is now fixed, and that this beautiful daughter of ours can now live a normal, healthy life.  Her being back home with us also closes out a very challenging chapter of our lives, and ushers in new, hopefully brighter, less-stressful one.  

Her last night at the hospital was very difficult, as she was in a lot of pain and cried through most of the night.  Amy was up walking her around the hospital at 2:00 a.m. to try to calm her down.  It was pretty clear that she still needed the Lortab, and we had taken her off it too soon.  Doctors this morning approved her to remain on Lortab for another couple of days.

Now that her pain levels are back under control, she is doing very well.  She seems happy to be back home, and has been all smiles and cuteness since we arrived.  Her doctors felt that supplemental oxygen would not be necessary, even with her continuing on with Lortab, so we were pretty pleased to not have to bring an oxygen tank home.  That being said, we'll still keep monitoring her O2 levels with the pulse-ox device we have at home for a couple of days to be sure.

Emma's doctors and nurses emphasized that effective immediately she can be treated like a normal, healthy child, and we are now free from the sequestered life we have been limited to for the past six months.  Sure, there are things we have to be careful of, such as the way we pick her up so as to not cause pain or stress on her healing sternum.  We'll also be pretty cautious overall for the next few days.  But hearing this was music to our ears, as we have been restricted for so long in order to keep Emma healthy.

This will be our final Surgery Update post on this blog.  We are so touched at the outpouring of love and concern for our family throughout Emma's surgery and hospital stay.  Thank you for your kindness, your love, and your friendship.  We will still make updates to our blog from time to time going forward, so keep us on your radar, and feel free to check back often.  We'd love to hear from you as well.

Sincerely,

Dave, Amy, Triston & Emma

Surgery Update 25

9:00 pm - Emma is doing great. They removed her IV this morning, which is the last thing that was poking into her. Amy would not let them remove the IV unless they promised her they weren't going to be ordering more labs or need to draw blood before we are discharged. We also have taken her off the Lortab today, which has been both good and bad. Good, in that she was able to keep her oxygen saturation levels up while she was sleeping (which she has not been able to to on the Lortab), but bad, in that she has had periods of fussiness and crying, presumably from an increased level of pain. We are seeing her return increasingly to her normal self.  She relishes being held, and demands a lot more attention (hence no blog posts today until now). She has also just about had it with her crib. She screams at the top of her lungs if we put her in it. It makes sense, considering that most of her pain occurred in that crib. Today they were able to bring in a big padded mat and blanket to put on the floor of her hospital room, and she played down on the floor, sitting up for a long time. She seemed to have a blast. Also, Amy was able to take Emma for a walk around the hospital in a stroller this afternoon. She seemed to really enjoy being out, but tuckered out after awhile (Emma, not Amy)   :)

Up until the final chest tube was removed it was just painful for Emma to be held, so she remained in the crib with us comforting and interacting from above. Now we are making up for not getting to hold her. I have such a profound respect for my fellow heart moms and angel moms; all too often we have to let go of our children and hold them in our hearts rather than arms. It is not an easy thing to do. Some of us have to do it much longer than others, and you are an inspiration to me. It is something that you can't understand until you go through it, and I have only seen a small glimpse of it.

Well, tomorrow is the big day. We're really looking forward to having our sweet little Emma back home with us. What remains to be seen is whether or not we will have to bring a tank of oxygen home with us. We'll update tomorrow on how everything goes. We are fairly confident that we are ready to care for her at home. We have been learning from the nurses each day.

We can't thank enough those of you who have been helping us through this. We are not going to name names because there were so many, known and unknown to us. Someone mowed our lawn; several meals and snacks were brought into the hospital; nurses loved and cared for not only Emma, but all of us; messages of encouragement and love were sent our way; Triston was cared for; our surgeon dedicated his life to saving children, and he saved ours. Then there was the fasting and prayers. The list goes on and on.

Thank you!

Surgery Update 24

Sitting up on her own for the first time since open heart surgery

9:00 am - Poor Emma is simply out of veins that will give blood. Yesterday the IV team was called to draw a lab. You have to know, this team is awesome. They always get it in one poke, no excuses, ever. But yesterday they told me there just wasn't a vein that wasn't bruised. They tried in her hand but didn't get anything. The doctors graciously agreed to skip that test until today. Emma was due for a medication via IV at 2 am, but the IV in her foot was too sluggish, so at 1 am the IV team came. The plan was to place the IV and draw the lab from the IV. They have a little light that they shine under her skin to find veins. They took the light and started looking, but found nothing. Poor girl is so used to getting poked that she screams from the minute they start touching her and looking to the moment they leave the room. Emma's pudge doesn't help, most her veins are hiding under it and very small. So one member of the IV team left and got an ultrasound machine. They were warning me that this might not work and if it did, it was going to hurt more than an IV in a visible vein. So he found what looked like a vein on the ultrasound machine and placed the needle in and threaded the IV. He actually got it. He told us it was a bigger catheter in a bigger veins so we might be able to draw labs from it. The nurse is flushing it every two hours to ensure that it remains open. I hope it does, Emma has had it. She is to the point where she cries when anyone from the medical team touches her because she is afraid they are going to stick a needle in her.

Overnight the chest tube slowed down and didn't put out much of anything, so this morning it was pulled. The nurse practitioner from Cardio Surgery wanted to just pull it but I insisted on a bit or morphine. She argued that they don't usually use it, but she was more concerned about her schedule in my opinion. I made her wait while the morphine was given. I figure it is much easier to be blase about someone else's pain and that Emma has been through enough.

The doctors said she looks and sounds good. Dr. Kaza said we should plan on being here until at least Thursday. We are fine with that. We want to stay as long as Emma needs. But with the end in sight, I can't help but think how much Emma is going to love being at home. Her mom and Dad are going to like it too! Triston is the only one that is going to miss this place, it is like his dream come true. Emma is still dependent on oxygen, but they think they can wean her from it in the next couple of days. Her final IV medication is going to be administered orally starting tomorrow so things that we need to be in the hospital for are wrapping up. Yeah!

Amy is back to normal -whatever that means!

Several people have asked about me since I had to make a trip to the emergency room this week. I am finally back to normal, all the swelling is gone and I am banned from ibuprofen for life. Not sure how I am going to live without that stuff!

Surgery Update 23

10:45 p.m. - Not much to update tonight, except that our earlier report of Emma's chest tube drainage slowing down was a bit premature.  She actually has had a lot of fluid drain from her chest today, so any hope of getting the tube removed tomorrow is gone, which means we're not going home for at least a few more days.  Dr. Kaza (who now has asked us to call him "A.K.") good-naturedly said to Amy this afternoon, "I hope you didn't have any plans."  We really like Dr. Kaza (I can't bring myself to call him "A.K." yet).  But aside from the drainage, Emma still is doing great, smiling and showing a lot of her cute, pre-surgery personality.  We're so pleased with how well she is recovering.

It's unfortunate that Triston is off track at school right now.  He seems to be getting pretty stir crazy at the hospital all day.  He has to go back tomorrow, too, since Dave will be at work and Amy can't leave Emma.  But he is handling everything so well, and we're very proud of him.  He was so well behaved all day, and is just a joy to have around.  

Surgery Update 22

2:00 pm - Emma just keeps getting better every day.  She had a restful night, and her pain seems to be under control.  We have really enjoyed seeing her cute personality returning.  She hates her oxygen tube, and keeps pulling it off her face.  Her X-rays this morning looked very good, and the fluid in her chest is dwindling.  The amount of drainage from the chest tube is decreasing as well, so that is very encouraging.  We're told that if this keeps up, the chest tube could be removed tomorrow, and we could possibly go home as early as Wednesday.  This would be right in line with the 8-10 days we were told to expect to be in the hospital.  They were not able to draw any blood this morning, because they are out of places to draw it from (her veins are all bruised up).  The doctor said they could skip it today and they'll try again tomorrow.  

Dave returned to work today, so Amy is hanging out at the hospital alone with the kiddies.  Triston doesn't seem to mind being stuck at the hospital all day.  With all of the amenities they have to keep kids occupied and entertained, he feels like he's on vacation.

By the way, TOTALLY off-topic here...Anyone bought a Happy Meal at McDonalds lately?  OH...MY...GOSH!!!  That dang-blasted "Kids Bop" music CD they're giving out is enough to drive one MAD!!!  Triston made me (Dave) listen to it all the way home from the hospital last night, and all the way back this morning.  Madness, I tell you...Madness!  I'll bet if you play it backwards it is full of subliminal messages about eating more Big Macs, or something.

Okay, back on topic.  Thanks to all for your continued support and the love that you have shown our family this past week.  We have appreciated it more than you know.  ["Eat more Big Macs...Eat more Big Macs...Big Macs are yummy...Big Macs are good for you..."]

Surgery Update 21

5:00 pm - What a wonderful Mother's Day. We had so missed Emma's wonderful smile, then this afternoon she finally smiled! She started playing with her toys, kicking her feet and pulling on the wires attached to her. When she started pulling on the wires, we put a pajama shirt on her. Now we know that she is starting to feel a little bit better. She still gets tuckered out really easily and needs to rest the majority of the time. We couldn't be happier about her progress. There is nothing quite like taking a happy, healthy, pudgy baby into the hospital and losing her for almost a week because she had so much trauma to her body and is in so much pain.

We bought her a big mylar balloon and tied it to her crib. She spends a lot of time staring at it. Triston is still having a blast. He is still watching movies, playing games and going to the playroom. It has been nice to spend the weekend together as a family. We even attended a 30 minute sacrament meeting in a hospital auditorium.

When I went to the emergency room yesterday, I ended up getting an IV of the same medicine Emma is on. It was so surreal to have to leave her and head to another hospital. I laughed when he told me he was giving me Lasix. The swelling is not really cooperating and going away so I may have to head to my doctor tomorrow. Thank you to my mom and sister for stepping in and helping us get through the day yesterday.

Happy Mother's Day!

Roll Call

Just curious...

We know a lot of people are following this blog right now, but have only heard from a small handful of you by way of comments left on our posts (thank you, by the way, it's been fun to read your kind words).  We would be interested to know who has been sharing this journey with us this past week.   So, consider this a roll call!  Let's have everybody come out of the shadows and let us know you're there.  Just leave a quick comment to this post and let us know who's out there.  This will all be included in Emma's baby book.  This should be fun.

Surgery Update 20

7:30 a.m. - What a difference a day makes!  Emma is doing great.  Her pain is being managed quite a bit better; she is still on Lortab,  and there is a standing order for morphine as necessary, something we were misinformed about our first night out of the PICU.  She needed the morphine yesterday around noon, and slept for most of the day after that.  But she has not had any since, and seems to be doing much better.  She slept throughout most of the night, waking only when the Lortab was wearing off.  She is still eating in small doses, but the good news is she is doing much better at holding down her food.  Although we still haven't seen the million-dollar smile we love so much, she does seem to be slowly returning to her normal self.  Her color looks great, she isn't nearly as bloated as she was, and she is much more alert when she is awake.

Twice in the night we tried to decrease her oxygen dose, since her ox-sat levels were at or near 100% most of the night.  She already is on a small dose, but each time we tried to decrease it to the next step down, her ox-sat quickly tanked to the low 80s, causing the monitor alarms to go crazy. Weird.

She still has a lot of drainage from her remaining chest tube.  I don't know yet if this is something to be concerned about.  I'll ask when the doctor makes his rounds this morning.  I would think that Emma will be much happier once that tube is removed.

Surgery Update 19

3:30 pm - As if this week weren't already interesting enough...

The swelling in Amy's ankles, feet and hands got progressively worse, extending into her calves and forearms last night and this morning, causing her a lot of pain and discomfort.  She doesn't have a history of any swelling like this, and doesn't have any of the conditions normally associated with this type of  thing, so it was pretty concerning to us.  She was advised by the Urgent Care clinic to go directly to the emergency room.  Amy's mom was here at Primary with us and was able to run her to the ER at LDS Hospital while Dave stayed with Triston and Emma.  At LDS Hospital, they hooked Amy up to an IV and are currently running a series of tests and X-rays to determine the source the swelling.  What we have found out so far is that she is apparently anemic, and is having an adverse reaction to Ibuprofen.

Emma is still doing pretty well, all things considered, although she had a pretty fussy night and morning.  Her transition from the ICU to a regular room has been a little rough for Emma, mostly from a pain management perspective.  In the PICU, they kept her pretty well knocked out with pain meds most of the time, and up here on the floor, their method is more of a wait and see approach to administering the pain medication.  They did give her some morphine finally about an hour ago, which has really helped, and she is sleeping soundly.

Amy's sister came and took Triston a few minutes ago, so that should be fun for him to get away from the hospital for awhile.

Surgery Update 18

11:30 p.m. - What a crazy day. We've been trying to post an update all day, but haven't had a chance until now. Our big news for the day is that we have officially graduated from the PICU! Yeah!!! She is also no longer considered to be in "critical" condition. Emma was moved to the Children's Surgical Unit around 2:30 pm. First, she had her pacing wires removed from her chest, and three IVs were removed from her neck, groin and hand. That's got to feel a little better. At least she won't have to feel like such a pin cushion anymore. Well, I guess that's not entirely true, as she did get a new IV in her right foot. Also, one chest tube is still in place, (it's still draining too much gunk to remove). Prior to pulling the tubes and wires out, they gave her some morphine. As a result, she has slept most of the day. She is still throwing up some of her food. We are hoping that as she continues to heal and take less medicine, she will keep more down.

She now has her own big room, with comfortable accommodations for us to hang out in. It is big enough for one of us to spend the night on a bed rather than standing or in a chair. After getting settled in the new room, Dave left to go home and get a few things and to pick up Triston from Grandpa and Grandma's house in Herriman. It is nice to have Triston with us and he loves having his own personal Play Station 2, a playroom, movies and slushies.

Amy has run into a bit of a snag, her feet are swollen to twice their normal size. We are guessing that the standing room only accommodations in the PICU didn't help. Hopefully they will get better quickly so she can be up and about again. If they are still bad in the morning she is going to go to the doctor.

We are so grateful for Emma's continued improvement. We have been in awe as we watch her heal. Thank you for your love and support. We have felt your prayers every step of the way.

Surgery Update 17

8:30 a.m. - Emma had a great night!  She slept soundly most of the night, waking only occasionally for a bottle or binky, or to have her diaper changed.  She is holding down food, and her urine output has increased (these are two of the main things they wanted to see before letting her leave the PICU).  Although she's sleeping most of the time, she seems to be increasingly alert while she's awake.  

The great news of the day is that the doctor tells us we'll be leaving the PICU today.  But before they let us graduate to the regular floor, they are going to remove the arterial lines from the neck and groin, as well as the heart pacing wires.  These are wires that were sewn to her heart during the surgery in case her own rhythm failed and she needed a pacemaker (which, thankfully, she didn't end up needing).  They were attached to her heart in a way that will allow them to just pull right out.  They are also going to remove one of her two remaining chest tubes.  All of this means MAJOR progress.

Emma, at just 6 1/2 months old, is one of the strongest people I know.  We are so proud of her little fighting spirit.  She is doing some really cute things.  This morning she is "talking" a lot, doing this cute little cry/complain jabber.  You'd have to hear it to appreciate it.  It's not actually "crying," per se, but rather a "nya-nya-nya-nya" over and over in up-and-down phrasing that resembles speech patterns.  It's pretty funny.  I think we're going to have an early talker.  The other thing that's funny, is that she'll pull her binky out of her mouth to complain to us, and then pop it right back in.  She's really showing a lot of the cute personality we love so much.

Surgery Update 16

7:00 pm - Emma has been sleeping almost constantly since her earlier sedated echo. She did take a couple of bottles, and threw up after the second one, so she is still not holding down food very well. But otherwise she continues to do very well. She will remain in the PICU until tomorrow at the earliest. They want her to be off of the Lasix, and to be able to hold down food before they'll let her move to a regular room.

The PICU has been just hopping this afternoon, and it feels like we have been playing musical beds. We are currently tripled up in a space meant for two, so things are pretty tight. We don't really have a place to hang out quite like we did the past couple of days when we had our own room and we had comfy chairs to sit in. There currently is standing room only at her bedside, so I don't know what that will mean for being able to spend the night with her. We'll have to figure that one out.

Tubes and Wires

Emma is sleeping and sleeping. I am sure this is great for the healing process. Since I am just hanging out I thought I would catalog the tubes that have run and are running in her little body right now.
Ventilator Down the throat - removed (now she just has a little oxygen in her nose)
Catheter - removed
Center Chest Tube - removed
Left Chest Tube
Right Chest Tube
IV in the neck
IV in the wrist
IV in the groin
2 Wires attached to the heart

Poor baby! Each of these that comes out is a victory for Emma.

Surgery Update 15

9:30 am - Big news! They removed Emma's main chest tube! It was the big one near the heart. It was probably the most painful tube left as well as a risk for infection, so this is great news. I didn't watch because I didn't want to see a tube that thick come out. It was probably the size of a pea.

Unfortunately, we lost our wonderful, closed-in quiet room. We are now in a room with just curtains across from a hallway and desk on the other side of the hall. Yuck! Hopefully we will get to move to a regular ward room soon.

Emma also had a sedated echocardiogram at about 10 am so we are waiting to hear how that looks. They are checking the heart function to see how it is now that she is off all the heart medicines. I am anxious to hear what the doctors have to say. If it looks good I have a feeling this will be out last night in the intensive care unit.

We love our surgeon, Dr. Kaza; he is very attentive and comes by several times a day. Then he calls about three times a night to check on her. He has been watching closely because it is pretty rare to put a kido on the heart/lung bypass machine three times in one surgery. That alone might make her recovery take a bit longer.

Emma is pretty sedated now, but she was fussy before so we will see how she feels with the sedation from the echo wears off. I also want to mention our sweet little Triston, he is at Grandpa and Grandma's while we are in the hospital, and we miss him and appreciate his sacrifices for his little sister. He is the best big brother ever! Thanks for your continued prayers.


...The cardiologist just came from reading the echocardiogram and everything looked really good. Emma has a couple of smaller holes around her VSD patch (the patch between the right and left ventricle, and a small hole right at the patch. They didn't know about those holes, but even if they had they wouldn't have tried to repair them. They are of no consequence in the long-term. They may close on their own or they may not. But the overall heart function is great and the actual repairs made in surgery are good. This means she stays off heart meds continues to heal.

There are now rumblings that she will be out of the PICU and into a regular room by this afternoon! She just needs to stop retaining fluids. Fingers crossed!

Surgery Update 14

7:00 a.m. - The night was pretty uneventful, and Emma slept pretty solidly until around 4:30 when the X-ray technician came in. Emma has decided that she doesn't like the X-ray guy. Since about 5:00 am, she has been having a little bit of a rough time. She is fussy, and crying intermittently, and has vomited twice. They're now treating her for a upset stomach, and the doctor wants her to go four hours without eating. Emma won't be happy about that.

Surgery Update 13

9:40 pm - Everything is still going well. Emma is still bloated and puffy, and they are about to give her a large dose of Albumin to help move the fluid from her tissues into her blood vessels. She had been receiving regular doses of Lasix to help with the bloating, and that is now being given on a continuous drip, so hopefully the swelling will go down soon.

She is now taking formula from a bottle, which is another milestone. She had her catheter removed earlier. Dr. Kaza had told us early this afternoon that he would probably remove the chest tubes tomorrow morning, but later recanted, citing concern for the for the amount of fluid still draining from her chest cavity (which, by the way, is not unusual at this stage of recovery from open heart surgery). She also has quite a bit of fluid in her lungs that needs to work itself out. Today's X-rays show less fluid than yesterday, so it is improving. Another big milestone for today is that Emma is now off of the heart medications.

Emma received a priesthood blessing tonight, during which she cried quite a bit. The nurse came in midway through to give her some additional pain medication. She is now asleep, and resting peacefully, although she stirs and waves her arms around from time to time.

Several people have asked how we're holding up throughout all of this. I don't think we've thought very much about ourselves, as Emma is our main focus, but I think we're doing pretty well, all things considered. We are staying at nearby hotel, literally about a 5-minute walk from the hospital. At least one of us is with Emma around the clock, except for twice daily when they make everyone leave the PICU for an hour while they do their shift change (tonight we used that hour to go to dinner together, and it was actually nice to get away from the hospital for a bit). We are taking turns getting a few hours of sleep at a time while the other one stays at the hospital with Emma. We also have periods where we are both here in the room with her.

Surgery Update 12

3:00 pm - Emma has now had her first bottle of clear liquids, as well as starting some medications orally. She is meeting every milestone that she is supposed to with flying colors. She still has some significant drainage from one of her chest tubes, so she is not going to lose all the tubes she is hooked up to right away, but it is nothing concerning. Her temperature has gone back to normal as well. We are thrilled with her progress and can't wait to see our flirty smiling girl soon. Thanks for all the love and support.

Surgery Update 11

2:00 p.m. - Emma continues to do well. She has a little bit of a fever, but nothing unusual for this stage in her recovery. She is becoming a little more alert, although she mostly sleeps. Amy was able to hold her for the first time since the surgery, which totally made her day. I think we expected to not be able to hold her for several days, so this was a welcome surprise.

Surgery Update 10

10:40 a.m. - Emma was just extubated, and is now off the ventilator. She is still doing well, although still pretty swollen. She cried some once they removed the ventilator tube, but is now sleeping peacefully. She is on oxygen, but they have already reduced the amount twice since she was taken off the ventilator. Everything still looks very encouraging.

Surgery Update 9

6:15 a.m. - Emma is currently in what they call "stable critical" condition. She did very well throughout the night. She didn't have any problems with her heart, and all of her vitals look great. At one point they were concerned that her blood pressure was too low, but they gave her some blood pressure medication and it came back up. The nurse said that the low blood pressure has to do with the amount of fluid in her blood vessels, and is a residual effect of having been on heart/lung bypass. Her breathing improved steadily through the night, and they are planning on taking her off the respirator later this morning. They are currently doing a "spontaneous trial," in which they have put the respirator on backup mode, and are letting her breathe on her own for an hour to see if she is ready. So far, she's doing great breathing on her own.

Dr. Kaza, the surgeon, just stopped by on his morning rounds. He said we have two goals for today: 1) get Emma off the respirator, and 2) reduce the amount of swelling throughout her body (she has some edema, another residual effect of having been on bypass).

Surgery Update 8

7:20 pm - Emma is now in the Pediatric Intensive Care Unit (PICU) and is stable. We have spent the past few hours at her side. She is currently intubated and on a respirator, she has chest tubes in place for drainage, as well as numerous other tubes and wires. She will most likely come off the respirator tomorrow. She has one nurse dedicated to her around the clock, which gives us some peace of mind. Seeing her in this condition was difficult to take in. She will remain sedated at least until sometime tomorrow.

Just a few quick comments about the surgery:

• We heard from both the surgeon and anesthesiologist that Emma was smiling and in good spirits right up until they point they administered the anesthesia and she went to sleep.


• The VSD (the hole between the right and left ventricals) was about the size of a dime - pretty large, considering her whole heart is no bigger than a kiwi fruit.


• Although they had to cut into the pulmonary valve, the surgeon told us that that does not automatically mean that she will need the valve replacements every few years, as we had previously been told. He said that we'll just have to wait and see how she does, and that it's possible that she could make it into her 20s or 30s without requiring additional procedures or surgeries. That gives us something to hope for.

We continue to be impressed with the fighting spirit of our little Emma. She has overcome so much in such a short amount of time, and we have no doubt she will get through this. Even after coming out of open-heart surgery, she is beautiful, and is just sassy enough to stare down this latest challenge and declare victory. Thanks again to all of you who have expressed well-wishes, and have prayed for her safe keeping.

All our love,
Dave and Amy

Surgery Update 7

3:06 p.m. - We just spoke with the surgeon. He said the surgery went very well, and Emma is now on her way to the PICU. There turned out to be a very large hole between the right and left ventricles, and three small holes between the right and left atriums. He gave us the actual leftover patch from which he had cut out the piece used to repair the VSD (the hole between the left and right ventricles). This will be pretty cool to have for her baby book. He did have to do a transanular patch (across the valve). I'm cutting this update short because we've just been given the go-ahead to go see Emma now. More updates later. Thank you SO much to all of you who have kept us in your prayers today. It has made a huge difference.

Surgery Update 6

1:40 pm - We just received the good news that Emma is once again off the heart/lung bypass, and is doing well. Her echo looks much better, and her pulse and blood pressure are both very good. The not-so-good news is that they did end up having to cut through her pulmonary valve. So, based on that information, we can assume Emma will need additional surgeries every few years as she grows. Although that is not the news we wanted to hear, we are thrilled to hear that she is doing well. The nurse practitioner was limited as to the information she had available, but said the surgeon will be out to talk to us in about an hour. They are currently cleaning up the bypass equipment and closing her up.

Surgery Update 5

12:35 - Emma was removed from bypass, and her heart started back up without incident. Unfortunately, they found there was still too much pressure on the right ventricle, so she needs to go back on bypass. The echo showed a buildup of excess muscle right below the pulmonary valve, which they are now going to try to remove to help normalize the pressure. If that doesn't work, they will have to cut through the valve. If they cut the valve we will need to come back for a valve repacement in about 5 years.

Surgery Update 4

12:00 p.m. - The bulk of the heart repair work is now complete, but they are waiting for Emma's temperature to rise before they'll take her off bypass (they had cooled her body temperature for the surgery). Once they take her off bypass, the heart should kick in again, and they can do the new echo cardiogram and see how the valve is performing. If it looks good, they will close her up and move her to the PICU. Otherwise, she will have to go back on bypass, and they will have to cut through and patch the valve. It's looking like we're a little ahead of schedule, but not out of the woods yet. We should receive another update in an hour.