Sunday, July 29, 2012

At the Lake

We had a fun time at Utah Lake with the Alders on Friday. It was the boys' first time in a boat, and they were very excited. In the end, they decided not to get in the water (well, Dax kicked his feet a little off the back of the boat), but it turns out dad can still ski. He pulled himself right up on all 3 attempts. He wasn't nearly as good at wake boarding (he pulled up, but it was like he was on ball bearings and lasted about 5 seconds). Also, don't ask him to get anything off the top shelf because he is sure sore today!

Natalie and Seth sat this one out, but next time they will be on the boat for sure. Below are the pics and ski video.

Getting ready to go on the boat.

Dax and Ty

Randy on the tube

Dax squirting dad.

Dad and Mark enjoying each other.

Driving the boat.
video

Monday, July 23, 2012

Our Fish Does the Backstroke

So, you know all about Seth and his surgery, but one of our lesser known family members is our fish. I bought him from a fair at school-- fish, tank, rocks, food, water, etc. for $14. Mark and Dax really love him. Mark wanted to name him Jorge after Natalie's old fish from long ago. Dax wanted to name him Poochie after the name we called Seth in utero which was Moochie. We finally settled on Poochie Jorge, or PJ for short.

We think he is a black moor fish. Whatever the case, he has a unique and somewhat disturbing habit. He likes to float on his back at the top of the bowl. The first time this occurred, Dax came to tell us the fish was "sleeping" on top of the bowl.

We've learned if you gently tap the glass, he tips back over and swims away!

Yes, he is floating on his back. The first few times we thought he was a goner.
 But we have learned that sometimes PJ likes to do the back stroke.

Friday, July 20, 2012

Pictures of Seth

My favorite because he looks so calm.

Natalie and I have differing opinions on which of these pictures of Seth is cutest-- I mean, they both have Red Sox jerseys, so they are both great. I like the one above. Natalie prefers the one below.
Her favorite for that little half-smile.



Thursday, July 19, 2012

Follow-up at Primary Children's

Yesterday Seth had his follow-up check-up at Primary Children's. As the nurse fumbled with the blood pressure cuff and came up with a drastically different reading in Seth's arm and leg, we almost had heart attacks! She got things adjusted correctly, though, and he was perfect.

They took an x-ray and he was perfect, too. Finally, they hooked him up to an EKG. It took a little longer to get this one done, especially since he had the hiccups and kept interrupting the test with a big old bounce on the monitor for each "hic". The pulses in his feet were strong, too.

Seth was awesome for the EKG despite his hiccups.

Finally, they took the steri-strips off his incision, and it is healing very well. In fact, the scar is almost covered by a baby-fat roll.

You can barely see the scar.

Last week, we also took Seth to our pediatrician. We asked him about coarctation and he said he was quite familiar with it. In fact, he said, he'd lost 2 patients to it. I almost thought he was kidding, but he said that it is very often fatal in serious cases like Seth's. We felt even luckier when he explained that most babies go home looking healthy and happy, but then that little vessel closes off and they immediately take a turn for the worst. They can be gone within 24 hours.

That's why we believe our little Seth is a miracle. If we hadn't stayed in the hospital an extra day for the c-section. . . if we hadn't sent him to the nursery the night he was struggling. . . if an astute nurse hadn't taken his blood pressure. . . if she hadn't immediately contacted the cardiologist. . . we don't believe Seth would be with us right now.

Thank heaven for miracles!



Tuesday, July 17, 2012

Seth & Sleep

Just chillin' with my feet up!

Seth will sleep anywhere, as long as it is not in his bassinet. He will sleep in the car seat, on the couch, on the floor, on us, but don't lay him down in his bed because he will wake up in seconds. Seth doesn't even mind if there are dirty socks right next to him.

Eventually he'll learn to like his bed, right?


Wednesday, July 11, 2012

Words Cannot Express ...


Seth is doing wonderfully well here at home. We have a visit with the pediatrician on Friday and one more follow-up visit to PCMC on the 18th to check how his incision is healing. It is very much like having a "normal" baby around here. The only difference is that he give him Tylenol every 6 hours and pick him up under the head and bottom rather than under the arms.

So, it seems that our little drama has drawn to a close. We prefer to think of it as a beginning rather than an ending. When we decided to blog about Seth's birth, it was our way to connect with family without making all those phone calls. With a brother and his family as far away as New Zealand, it was a simple way to send pictures and our story to everyone. We never dreamed that Seth would be born with any complications, and we never guessed that so many people would be interested.

To be honest, we were somewhat embarrassed that our little tragedy traveled so far so fast. It's a miracle to us that our little guy is home in a week and expects to live a normal life. We know many people who have suffered much worse with much less support and love.

So, we have struggled how to thank everyone who helped our family through this trial. Every phone call, message, text, email, card, snack bag, meal, and gift made each day a little easier. We have shed countless tears over the generosity of our family, friends, and neighbors. Every day we go back and read through our experience and your comments to feel your love and relive the miracle that has affected our family. We feel that as we dealt with Seth's surgery and recovery we got far more than we ever deserved.

So thank you from the very bottom of our hearts. Thank you for showing such love. Thank you for your faith and prayers in behalf of our son. We believe that it made all the difference.






Sunday, July 8, 2012

Home

We're heading home!
Seth was cleared to come home! We are so excited. We had to learn how to care for his incision (no baths and watch for infection), when to give him his medicine (only a diuretic and Tylenol), and what signs to watch for that his heart is not doing well. We scheduled a follow up appointment for 10 days from today and they want us to see our normal pediatrician this week for our regular 2 week check up.

Then Seth needed to have his IV taken out. The last piece of hardware left from the hospital stay. It only took a few minutes and then they took off the monitors. No more wires. It was awesome to nurse him without him being attached to anything. There was a lot of down time as they gathered things up for us to take home (bandages, syringes, information sheets, my pumped milk). Finally at 1:00 pm we walked down the stairs and out to the car.

A whole new adventure is about to begin.


It has been a long nine days.

Today?!

This morning (Sunday) I called Natalie to see when we could come and visit her and Seth. She said that Seth was doing extremely well. He had his oxygen removed last night and they are talking about him coming home today.

The wound on his side is a bit weepy, and he actually lost a little weight (only 6 grams, but that's not the weight gain we hoped for). They have started giving him a diuretic which means that he is shedding a lot of water, so the weight loss isn't a huge surprise. His vitals all look great. He is doing "the car seat test" right now. They leave him hooked to the monitors while he sits in the seat for the duration of our car ride home. That's about 45 minutes.

They watch his heart rate and oxygen levels to make sure he can handle a car ride.

We thought that once we found out he was coming home, we'd be ecstatic, but it turns out that it comes with plenty of worry, too. Caring for a newborn is a difficult experience anyway, but how do you bathe a child after major heart surgery? How do we know everything is okay once those monitors are unhooked? What is something happens that we're not prepared to handle?

Mark and Dax were so concerned when Seth made any kind of noise.

The Incision

I was wondering what Seth's incision would look after the surgery. The surgeon said it would be on his side and back. So today they took the big bandaid off that covered it. The incision is still covered in steri strips (just like my C-section incision), but you can see how big it is, and it is actually completely on his back. The bandage below is where the drainage tube went between his ribs.


Saturday, July 7, 2012

We passed!


As we drove up to PCH last week, I decided that I wanted to learn CPR. I was trained on CPR in high school 20 years ago, and I've often thought I should take a refresher course, but it's one of those things that I've never gotten around to. One of the first things I asked when we got here was about learning CPR.

Well, apparently CPR training is required before we can leave the hospital. I wasn't aware that we were going to have to take a test before we could take Seth home, but we did. They gave us a video and our own CPR mannequin named "Mini." We watched the video and then had to demonstrate that we'd learned the procedure for the nurse.

The numbers and details of this are quite easy. Actually demonstrating was harder than it looked. First, you have to push 30 times on the baby's chest. A clicker in the mannequin lets you know how hard to push, and let me tell you, it is really hard! In addition, Seth's current heart rate hovers around 165 beats per minute. That means you have to make those chest compressions almost 3 times per second! The breathing was much easier. It's 30 compressions, 2 breaths, repeat. We only had to demonstrate two cycles to pass, but I'm sure by the time 5 minutes pass in real-life, I'd have sweat pouring off my forehead! Here are some pictures of our final exam.



Seth's New Home



It's been another big day up here at PCMC. I was able to nurse Seth today and he did great. He latched on great and even gave me a big smile half way through the feeding--I didn't care that it was a gas smile. Then we fell asleep in the chair together for awhile. It almost felt like we were living a normal life.

And now we just moved up to the CSU (Children's Surgical Unit). This is a less critical unit. It's nice to be out of the ICU because it means that Seth is improving. The room is also HUGE compared to the ICU. I do worry because he won't have his own personal nurse anymore, but he probably doesn't need the constant care as much. Besides, I will probably be here all the time anyway.

Seth in his new room.
I think Seth looks skinny now. I am used to big, chubby babies and when I showed up I looked at his face and it seemed so thin. I know he lost weight, but I didn't think I would see a recognizable difference. I hope he will gain it back quickly. The nurses assure me he will be fine.

Mark and Dax came to see Seth today. They haven't seen him since the surgery, so they were very excited.

I think he looks skinny here, too. Juxtaposition tends to do that!

Mark's really impressed by how tiny Seth is.

You can add your own joke caption in the comments.
(In reality, Natalie took 4 pictures and Dax tried a different face for all of them.)

Another Answer

I got to the hospital about 11pm last night. I was really excited to hold and feed Seth his bottle of milk. The nurse said she expected him to wake up hungry anytime. Finally, at 12:45am she changed his diaper (rather vigorously, I thought), and he woke up. It was wonderful to hold him. He was so alert. He was definitely trying to figure me out. I felt like we finally had our baby back.

The nurse let me hold him for an hour, and sent me off to the sleeping room. It was 2am and I didn't have an alarm or any way to get a wake up call, so I rested fitfully, (afraid I'd wake up at quarter to 11) until 5 o'clock. Then I went down and held Seth a little more.

During this time I got the good news that Seth is leaving ICU today and will be transferred to what everyone calls "the floor." (I think they used to call it "the ward" but that has a bit of a "crazy" connotation).

All through this process I have had questions nibbling at the back of my brain about how to care for Seth when this drama is over. Questions like: What will his life be like? What will we do to care for him in the first week at home? The first month? Year?

I've asked several nurses, doctors, and even the surgeon these questions, but no one gives a very satisfactory answer. The surgeon was most succinct when he said, "That's something we'll worry about at a later phase."

As I held Seth this morning, I let these questions roll around the front of my mind. All I really know is that "Seth will lead a normal active life," an "He'll have to keep in touch with a cardiologist." That's not really an active plan for what to do with him when we finally get him home.

At 7am, I got kicked out of the hospital for shift change. As I straggled down the stairway, I passed one of Natalie's oldest friends. Jen and Natalie were very close growing up. Since 6th grade, they were 2 of the only LDS members in their middle and high schools in California. They became such good friends they came to BYU together, where they shared an apartment for all 4 years while Natalie worked on an education degree and Jen became a nurse. Then Nat and I got married and we saw much less of Jen. We went to her wedding, and we knew that she was a nurse at Primary Children's Hospital.

Jen recognized me on the stairs and asked what I was doing there.

 "I have a boy in CICU. He just had coarc surgery," I replied.

"Oh my goodness! I have a 9 month-old that had coarc surgery right after he was born, too."

"How's he doing?" I asked.

As she started to talk about her son walking and talking, I realized this was another miracle.

"Can Natalie call you?" I asked.

Of course, she could. Suddenly, I felt like someone had handed me a flashlight before I venture out into the dark. Not only is Jen a nurse, she is almost a year ahead of us in her coarc experience. I'm sure she and Natalie are about to become close friends again!

Friday, July 6, 2012

Why I love being a mom



Tonight before I left the hospital, Seth was very alert and awake. The nurse and I tried to wash off most of the goo that was on him from all the tubes and bandages. Then she asked if I wanted to hold him. I couldn't believe she had to ask. So I got to hold Seth for about 20 minutes and he just stared at me. I love taking care of him and looking at his sweet little face. He kept trying to get in a good nursing position, and was a little frustrated I wasn't feeding, but I loved every second of it. The nurse assured me that tonight Randy could hold him and even feed him a bottle since Randy is going to stay the night. I didn't want Randy to feel left out. Here are some pictures (they are from my phone, so some are slightly blurry).
Randy's dad stopped by and Seth was checking him out.


I think he remembers me!

Seth Gets to Eat

Seth eating some Pedialyte.
This is Natalie. It is my turn to be up at the hospital. After a restful night in my own bed--the first night since I had Seth last Friday--I was ready to go see Seth. I missed him. I hadn't been away from him more than a few hours since he was born, so the 20 hours I wasn't at the hospital was really hard.

Seth is doing amazing. As Randy shared in the last post, he has been losing lots of hardware! In fact, they just removed his arterial line--a line which measured his blood pressure continuously that was stuck directly into an artery. Luckily, it didn't squirt everywhere when the nurse took it out because I don't know if I could've handled that. She did have to hold his wrist for 15 minutes to make sure the bleeding was done. Seth was so still and good when she did this, we were impressed because sometimes he can have a little bit of a temper. Now, the only thing left poked in him is an IV (he has monitors stuck on him, but not poked into his little body).

Then, Seth was ready to try eating. All of his tests came back with perfect numbers. The doctor who was reading the labs said, "Look mom, he is already getting good grades." He was able to drink 1 ounce of Pedialyte. Not what he probably wanted, but he sucked it down in record time. If he can keep it down, they will try a few more ounces of Pedialyte. If that stays down, they can start using all the milk I have been pumping for him.

I am so glad he is making such great progress. He will probably be able to leave the CICU tomorrow and move to "the floor" as they call it around here meaning the Cardiac Ward meant for less critical patients. I am sad to leave the amazing staff around here, so hopefully we'll get to see some of them over the next few days.

I don't think this looks comfortable, but Seth loves to lay like this right now. Whatever keeps him comfortable.

Seth Loses a Lot of Hardware

NOTE: This entry was originally written in real time like yesterday's entry. I hate the bottom to top format and the script-like feel of that platform. I've tried to make this entry a narrative, though it doesn't flow, tense jumps around, and their are some poor transitions. Still, I think it reads better than yesterday's entry.


I expected to spend most of the night in Seth's room, but it didn't work out that way. I sat with him until close to 1am, and then set out to find the sleeping room. After ambling around the floor for awhile (I swear this place has a deliberately confusing layout to confuse intruders) I found Greg the nurse, and he helped me to the sleep room-- a 5 foot by 10 foot room with a bed. Luckily, I could control the temperature and promptly turned it down to 66 degrees, my favorite sleeping temperature. From there, I didn't twitch until after 6am.

I went and sat with Seth this morning and saw him open his eyes only once before the 7am shift change, but his tiny feet were warmer than I've ever felt them. I tried to talk to him, but his eyes just kind of rolled around for about 30 seconds, and he went back to sleep. The nurse told me then that the feeding tube would probably be removed when the doctors came around doing "rounds" during the late morning.

When I came back up after shift change, I was so excited that Seth was starting to stir and open his eyes. Then he started to throw a little tantrum. He is so hungry-- it's been over 24 hours since he's eaten. He is sure to be in a lot of pain, too, because they are being skimpy on the meds because pain medication affects his breathing. If he's going to get the breathing tube removed, he has to do a little better. He stopped breathing twice during his "test trial" when they turned his oxygen down.

It is heart rending to see him cry. Because the breathing tube is taped in, and runs between his vocal chords, he can't make a sound. The scree of tape across his lips bounces angrily up and down and his tiny body quivers. Tiny baby tears wet the corners of his eyes, and his feet lash out. His face turns as red as a tomato. But the worst part is the silence. All I can do is cup my hand over his head (they say this simulates the womb, and it does seem to comfort him) and speak softly to him. I was excited to see him awake, then praying for him to fall back to sleep.

I had tears dripping off my chin when the 12 (yes, 12) people came in an hour later for rounds at 9 am. They discussed Seth's condition and decided they could remove the breathing tube-- right after rounds. That meant probably around noon.

The good news was that the chest drainage tube (the most painful one) can be removed today. They also said his arterial line, which is stitched into an artery in his arm and his catheter can be removed, too. That means he'll be down to monitors and an IV. They may also supplement oxygen with one of those two-pronged nose things.

At 10:00 they took out Seth's catheter and drainage tube. The drainage tube was going in his left side, held with a stitch. I watched as they plucked the stitch and pulled out a 6 inch long tube as curly as a pig's tail. I was happy to see the catheter after it was removed. He cried for so long that the nurse gave him morphine despite the breathing machine. She said sometimes crying is the best thing for getting them alert and breathing. I'm sure she said that mostly for me.

Finally, around 11am, they took out Seth's breathing tube. The nurse gently wiped with an alcohol wipe as they pulled the tape back. Then 10 cm of tube came up, and he began to gasp for air. A few days ago he had a really nice squeal, but now he can only moan hoarsely. He has oxygen on his nose, but everything seems to have gone well. The nurse (and I) will watch now to make sure his oxygen doesn't dip and even more importantly, that he is not laboring too hard to breathe.
I can't wait to hold this guy tomorrow!

Thursday, July 5, 2012

Seth's Surgery

His eyes look a little goopy because they put ointment in them.
Patients under anesthesia don't blink.
11:00pm I just arrived at PCH to stay the night with Seth. Natalie is at home getting her first good night's sleep since his birth a week ago. It also marks the first time either of us has been at home when the boys woke up since that time. I have been coming up in time to rescue Natalie from the 7am shift change, so they wake up to Grandma every day. Not much has changed since I saw Seth last. The nurse says that they don't want to take his breathing tube out tonight. Not because he's not doing well enough, but because there are not so many doctors, and if there is an emergency, it requires getting a doctor here to put it back in. I also found out he can't eat until 6-8 hours after the tube comes out, and that will be the most unhappy time for him. It has been an exhausting day, filled with emotional breakdowns that strike when you least expect them. Seeing his car seat that he was supposed to come home in a few days ago hit me hard. I can't imagine what losing a child at birth must be like . . . taking down the preparations that you've made. Again I think of all the people I know who've spent much longer periods of time in much more difficult situations, and it tears at my heart. This has been a minor bump in the road for Seth, and yet it's nearly put me in the asylum. It makes me see a lot more heroes out there than I used to! Above is a picture of Seth's condition tonight-- not much different except for the blanket.

8:30 We called Seth's new nurse because, Hey, she doesn't know we obnoxiously called 90 minutes ago, and she might have some new news. Seth is entirely out of the anesthesia. He has been given morphine for the pain and is a bit logy from it, but he opens his eyes and seems very upset he can't eat. It may be even tomorrow evening before he can have any food, even through a tube in his nose. That seems like a really long time to me. If he is not doing well enough then, he will have to receive intravenous nutrition.

6:50 We called Seth's nurse before the shift change at 7pm. He said Seth is doing smashingly well. He opens his eyes enough to give the nurse "the stink eye" when he changes his diaper. He also said that he believes the doctors will decide to take Seth off the ventilator tonight. That's the first step in Seth's recovery. (Followed by removing the catheter, beginning a feeding tube, and taking out the feeding tube to begin breastfeeding again. This could take a few days, but hopefully won't go up to a full week.)

4:50 We just got home. We were told this is the best time to be gone since the patient is entirely unresponsive and unaware. It will be a chance for Natalie to sleep in her own bed for the first time since Seth's birth. I may go back up tonight. That is undecided.

3:30 Dr. Gruber just came and talked to us. He said the coarc was "very serious." Where as a normal aorta is around 5mm in diameter, Seth's was "pencil lead" thin. He was glad to have it done now. He asked the nurse for the blood pressure in Seth's legs and one is 63/80. I asked, "Doesn't that mean the blood is flowing backward?" He responded, "To the untrained eye it may appear so. What it really means is the numbers are inaccurate. Blood can't flow backward." Seems like we may have a bit of a smart-aleck on our hands. As of now, everything is normal. Blood pressure in the lower extremities won't be stable for a few hours yet. Seth is already sucking on his breathing tube which means he is beginning to come out of the anesthesia. As each of his body functions returns, they can gradually unhook him from all of the machines. We can't wait to have our baby back and take him home!

2:25 They paged Dr. Gruber. He apologized about 30 times and said he'd been called to an emergency. He told us he would be up as soon as he could and encouraged us to go get lunch, which sounded like a plan. To be honest, I was better off in the OR waiting room. It is very hard to be here when he is so very still. Machines are doing pretty much everything for him. I keep seeing the beautiful, vibrant baby that was wheeled away from us just 3 hours ago. Natalie is a trooper today. I'm an absolute fruitcake. It didn't help that I had the side adventure that's been added below. I didn't feel that everyone at home on pins and needles needed to know at the time, but I want it for our family record.




These pictures make me feel like my heart has been torn out.
They don't seem to bother Natalie a bit.


2:10 I finally told Natalie that she had to ask before I lost my mind. The nurse said that Seth was back in his room, and she wasn't sure what happened to the doctor. He is head of cardiac surgery so he may have had an emergency. (Maybe he's at lunch, I don't know!)
They told us to head up to Seth's room and check it out. Sure enough Seth is here. I'll post a picture when I can. The NP told us everything went perfectly. Seth's aorta was only clamped for 11 minutes. There was nothing unexpected or worrisome. Now we're waiting for him to wake up, which probably won't happen until this evening. Then, he'll be mainly on morphine. It seems like he's had enough phine already to me. (That joke is way funnier when not typed out.)

1:45 We were told the surgeon would be out in about a half hour. It's been 65 minutes. When is it time to get worried???

Side Adventure: 12:55 They just announced that the rain outside is flooding the bottom of the parking garage and all cars on the bottom level must be moved. After frantically running like a mouse through a maze trying to get through classified access doors, and asking help of 3 different staff members, I got down the stairs to the front desk. As I headed for the front door, it hit me that the "bottom level" might not be Level 1 where I was parked. I asked at the security desk, and sure enough the bottom level is the Basement. I didn't have to move my car after all, but I did have to find my way back to the OR waiting room. This 10 minute side adventure was a blessing to be doing something, and a curse because we were expecting the doctor anytime.

12:40 Update #2: They have begun to close Seth's incision. Things went perfectly during the surgery. Dr. Gruber will be out in about a half hour to talk to us and answer any questions about the surgery. I'm going to see if I can get a 100 year guarantee. I may need a surgery of my own after this. It hasn't been very easy on my heart, either.

12:00 We just received our first update via phone. Natalie took the call. They have just made the incision, so I guess the last hour was prep time. They said Seth was doing really well (for what that's worth!) It wasn't much news, but when you are sitting here waiting, it seems like something. We've played igames, read, worked on crossword puzzles, and chatted. Nothing seems to make updates come any faster and no activity seems interesting for more than about 10 minutes.

10:50 (These things have really been happening on the 10 minutes!) Wheeled Seth into OR. They let us kiss him goodbye. It was pretty difficult to turn and go left while he went right. We know parents have to do this many times before their child walks out of the house for the last time, but it still seemed really hard! Now we play the waiting game. They promised to update us every 30-45 minutes. They even gave us a pager in case we leave the building. Probably unnecessary. There isn't a whole lot of chance of us heading over to the zoo.

10:40 Seth is ready to roll. Literally. They are loading him up in his transfer cart and moving him to the OR. He's been very brave. By that, I mean that he hasn't been able to eat since early this morning, but has been more annoyed than down-right angry. I've been able to hold him a lot because when Mom does, he gets really ticked off that he's not nursing.

10:30 Anesthetist came in an answered questions. "Bigger risk putting him in the carseat to take him home than from fatality due to anesthesia." We signed final consent form.

10:20 Surgeon came in and answered final questions. Seth's sutures will be in his aorta forever.

10:00 am The nurse gave Seth his final bath. Natalie went to pump-- she'll need to do that for the next few days until Seth can eat.

Wednesday, July 4, 2012

Doo Wah Diddy Diddy . . .

A great big brother.
We've been a little worried about Mark and Dax. They've seen mom about 6 total hours during the last week, and most of those she was in a hospital johnny laying flat on her back. Today was Mark's birthday, and thankfully some people stepped up to the plate. He got his favorite breakfast-- pancakes from grandma. My sister made a cool Star Wars cake with action figures on it. Then, to top the evening off, Mark's cousins took him to see some fireworks. Mark had a great day despite the circumstances, and we're really grateful for those who helped make it happen.

Dax, on the other hand is terrified of fireworks. I have to hold him and cover both ears with my hands until he falls asleep. Then the next two weeks are horrifying for him. He starts to finally get over it about the time the 24th rolls around and we start all over again.
Dax was so worried when Seth started to cry.

So, for a special treat for Dax he got to ride in Dad's car (it's just a Hyundai, but to him it's a rocketship) and take mom back to the hospital tonight. Then he got to hold baby Seth "all by himself" (not really). We asked what song he'd like to sing to Seth and he chose Doo Wah Diddy Diddy by Manfred Mann. It was so cute to hear him sing to his baby brother. By the time we got the video camera out, we only got the last time through. Here's the video:

~R

video

Meeting with the Surgeon

Seth was very alert this morning. We were excited because he has been very sleepy since we got to PCH.

We just had our meeting with the surgeon (did you know you can get from our house to PCH in 33 minutes even during traffic time?), and we feel really good about it.

Seth will be the second "coarc" operation of the day tomorrow, and the first begins at 9 am. The operation takes 2-3 hours from prep to post-op if things go as expected, so Seth's surgery will occur around midday. The surgeon told us the operation takes only about 20 minutes of those 2-3 hours. The rest is preparation and post operative treatment.

According to the doctor, Seth has the same risk of fatality during the surgery "that you have when you have an operation at the dentist." He's performed this surgery hundreds of times and is the head of cardiac surgery here.

The operation goes as follows: They make in incision on his left side that goes around to his back and spread his ribs. Then they move aside the lung and a large nerve that leads to the vocal chord. (Seth is likely to be hoarse for several days). The surgeon then clamps off the aorta and makes a cut above and below the coarctation. He removes both the narrowed portion of the aorta and the vessel that is used to pump blood before birth-- it is not needed and shrivels during the first week after birth, which may contribute to further narrowing. Then he sutures the two ends together and closes the incision.

One of my questions was what happens to the body while the aorta is closed. He described it the same as what happens to traffic when the freeway is closed. There are plenty of other less-convenient routes that can be taken, and for the short term no damage is done. If the aorta is closed off for more than an hour, paralysis becomes a possibility. He also said he's never gone over 30 minutes on this operation.

Recovery time is entirely dependent on Seth. He'll have a drainage tube to drain fluids because as tissue is severed cells can't drain into the blood stream as they normally do. Drainage can be near non-existent or last as long as 4-5 days. Seth will also be on a feeding tube for awhile after surgery, but he will receive mom's milk through the tube.

Happiest of all, when ask about dietary or physical restrictions, the surgeon said, "You should treat this child exactly as you've treated your other children. This should not be a life-altering problem." It sure feels life-altering for me, though!

~R

Seth loves when his dad sing songs to him.

We just love this little guy.

Tuesday, July 3, 2012

Surgery Scheduled

We are at home (we've been here since about 2, mostly to add Seth to the insurance and allow Natalie to freshen up). Nat is heading back to the hospital for the night, but before the 7-8 shift change, we wanted to talk to nurse Greg.

He said that Seth is doing great. He was astounded that he eats so much. He said most babies he sees eat 1.5 - 2 oz. while Seth eats 2.5 - 3 oz. of milk. I'm pretty sure that he sees many tiny, premature, or sickly babies with unhealthy appetites, or maybe our baby is just like his dad.

We also received news that answered our prayers! Seth is scheduled to have surgery on Thursday. He didn't have any other details, but he knew they had decided to do it on that day. This is important news to us because we were told that the surgery wouldn't happen on the Fourth (Wednesday), or Friday through Monday due to decreased staff at the hospital. If they'd pushed us to next week it would mean many more days to travel for feedings and spending additional nights in a hospital chair.

This means that if the recovery goes well that Seth could be home in 7 - 10 days. I can't think of news that would've been better at this point! We will be updating the blog each time we get new information.

~R

Today I'm Grateful, Too (2 Grateful, Not 2 Furious)

Seth had a huge grin, but by the time the camera came out, it was down to a little smirk!

Natalie wrote a really sweet post about 8 things for which she is grateful. I don't want to be upstaged, so I have put together my own list of things I have come to appreciate through this experience. Before I start, I whole-heartedly agree with Natalie's list, and I'm not going to repeat any of the things she's said-- Just know I'm grateful for those things, too.

1) I'm grateful that Natalie is an Amazon woman. I mean, she dropped a near 10 pound baby! This baby has a better chance of a successful surgery based on his size alone. He is more stable, more healthy, and faces a shorter recovery.

2) I'm grateful that Natalie is an Amazon woman. {WARNING: Graphic Content} I keep forgetting that 4 days ago she had a major surgery. As they were taking her staples from her c-section out a day early, I had to walk away because the skin wasn't sticking back to together. "Oh, don't worry, the stitches are underneath. That just flaps around a little sometimes," said the portly nurse. I'd watched the entire c-section, but that flapping smile of skin almost did me in. Only an Amazon woman could perform like Natalie has after undergoing such an ordeal.

3) I'm grateful Seth likes old rock n' roll. As a new dad I don't have much to offer a newborn anyway, but take away staying up at night with him, holding him (unfettered from ankle monitors and the like), and I'm even more useless than usual. I did get to sing to Seth today while he looked up at me with those skeptical eyes (talk about a captive audience). He seems especially partial to Phil Phillips' song "Sea of Love."

4) I'm grateful hospital food is cheap. Last night I had a double cheeseburger and fries and Natalie had a BLT all for under $10. It was pretty good, too. We haven't eaten for that cheap since we were dating and found that hotdog on the ground at the baseball game.

5) I'm grateful for technology. We have a lot of friends and family that want to know what's going on with Seth. If you've read the last few posts, you know exactly what we know. We've tried to keep it so you know what we know within 30 minutes of when we know it. I'm still not getting a cell phone, though!

6) I'm grateful for Utah Valley. Even in Salt Lake, the smell of coffee at the hospital is overwhelming. It reminds me of those night shifts I worked at 7-11 in college. How come you can smell alcohol, cigarettes and coffee from 50 yards, but you can't smell corn on the cob, chocolate, and kissing until it's right under your nose?

7) I'm grateful for Greg the nurse. Ever seen "Meet the Parents?" Our nurse is named Greg (not Gaylord) and as soon as I saw him he reminded me of Ben Stiller. His hair is much lighter, but the face is the same. Being someone who can't shut up, I ask him about it, and he said he hears about it all the time. He's a fabulous nurse, we hear him talking gently to the little one year-old in the next room, holding back her tubes as he plays with the firetruck with her. There are plenty of people doing a great job out there, but Greg the nurse is really special.

8) I'm grateful for Seth's smiles. Okay, I (and all other experienced parents) know it's a random facial expression that just happens to pop up like cutting the Jack of hearts from the middle of the deck. Still, it seems like it's meant just for me. And it makes me love him all the more.

Thanks for listening to the ravings of a lunatic. I think it's time for a nap now.

~R




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