*surgery update #8

As you may have noticed, when Will is home the blog updates are scarce. We did come home on Tuesday!

So far, so good. However it is very difficult to manage the pain of someone who can't talk. I have medicine to give him and we were schooled on the signs of pain but honestly, I just can't be sure what is happening. All of his signals are different now. He has two new cries - as in hungry cry, pain cry, change my diaper cry, or sleepy cry - but I don't know which is which. And he has always had a really quiet grunt but now he appears to be using that differently too. Also he is more verbal so I sometimes mistake him growling just to entertain himself as a wimper.

The only other difficulty about being home is holding him. I had a routine of carrying him around some of the day in a carrier/wrap. And when he needed comforting we would hold or rock him a certain way. Temporarily we can't put him in those positions so when he does one of these new cries I'm not able to try the old tricks. Depending on the trick that worked in the past we could figure out what caused the crying. Now we are inventing new things like bouncing the mattress in his crib. We are postponing our massages and little exercises. And clearly we have to forget about tummy time for building his neck strength for awhile. I'm looking forward to having him lie on my chest with his head on my shoulder again.

Here are some ways Will is still the same old Will: his happy smiles, likes his swing and bouncy seat, likes to "hold hands" [and no this isn't the baby grasping reflex...he really likes to hold onto my finger!;)], rub his eyes when he's getting sleepy, fascinated by his favorite toy, vocalizing more, and appears happy when I do the Isty Bitsy Spider and Patty Cake. We are constantly encouraging him to make more noises because we are really looking forward to him laughing regularly. I think he made a real  laugh once but we haven't heard it again. His laugh now is so quiet...he hasn't realized how much more noise he can make. When he is really happy he has a big open mouthed smile...we are waiting for the sound! We will often mimic his throaty cat-like sigh. It also has a bit of a grunt. And he mimics a sound from us but it still sounds like the throaty grunt sigh. We celebrate anyway because he does it on cue!

Twice a day we are cleaning the incision on his chest. So far I am only comfortable with squeezing the soapy water out of a washcloth onto him, rinsing the same way, and patting him dry. Bath time was already difficult with the feeding tube and now we have to keep him in pretty shallow water so none of his healing spots are under water. We are really looking forward to baths getting easier.

Next up is getting rid of the feeding tube. The one they sent him home with is longer than him! It has two ports on the end which is a mess because sometimes one pops open when you are shooting medicine or water down the other with a syringe. And since it is long he ends up sitting on it in his swing. I have to lift him and hope that dragging it out from under him won't snap off a top. Then milk pours out and we have a big mess. Not much longer though.

Well I've stopped typing about twelve times this morning to play with Will. I need to wash about 20 milk storage bottles and squeeze in a round of This Little Piggy before it's time for him to eat again.

*surgery update #7

Will is out of the PCCU and back to a regular hospital room. Still attached to him are: 5 leads going to the monitor showing his heart rate (the same shown in NICU pictures), the "red dot" on his toe to check his oxygen saturation, some "RA" lines (2 wires and something that looks like an IV), an IV in his foot (not hooked to anything, just there to get blood and give meds if needed), NG feeding tube in his nose, and an ID band around his ankle.

The red dot

We are getting back into his regular routine with feeding. I can't say the same for sleeping. Starting some time Saturday, Will went more than 30 hours with only about 2 hours in naps.  He wasn't crying or upset, but probably uncomfortable. We tried several things to get him to go to sleep and sometimes it would look promising...but within minutes his eyes would be wide open again. The key ingredients in getting Will to sleep in the hospital have historically been: pacifier, mobile, and swaddling. At home we mainly just need the swaddling, but sometimes will add the pacifier and rocking or swinging. With the help of the medical staff our guesses for this sleeplessness include discomfort from pain, being disoriented by the 24 hours of noise and lights, withdrawal from pain medicine, and other surgery related things. He finally went to sleep last night and is even more like himself today. He smiles some, kicks his legs, and looks happy to see us or a toy.

He (I mean We) may be able to go home by tomorrow! I think we are ready but it will be interesting to see how it goes. Normal activities like changing his diaper and holding him are difficult because it makes him uncomfortable, but thousands of other babies have had this surgery and their parents figured out how to take care of them so I know we will too. We are pleased that he is has done so well. The first 2-3 days of recovery seemed so bad but we continued to hope that he wouldn't be here for another extended stay. Tomorrow will be the 8th day of his hospital recovery after surgery...and we were told 6-14 days is typical. That's a pretty quick recovery!

I hope to have more positive news about his eating soon. His first attempt to eat from a bottle went surprisingly well. Sometimes he isn't interested in eating from a bottle at all, but other times he does fairly well. We will work with the nutrition staff after going home. Maybe soon he will eat all the time and no longer need the NG tube. He could probably nurse some too but I am going to have to see him a little more pain free before I attempt nursing. This is exciting to us because he wasn't doing either the week before surgery. So Will has gone from being 100% tube fed to eating on his own thanks to his heart repair! Not all the time, but more than he was before. In the past when he took a break from sucking he would be panting as if he were winded. Now he can pace himself and there is no more panting. Good signs that he will be successful pretty soon. It went so smoothly I wondered if he was doing it right! I haven't seen another baby eat in a long time so I don't remember what it looks like.

 The first bottle attempt on Saturday:

I wish we had video of the first successful post surgery burp. Chris and I leaned over both sides of the crib. I held Will up at the most awkward angle to hopefully keep him pain free. I had one hand on the back of his head and the other was trying to support his chest. As you can imagine I'm not comfortable handling his chest yet. The expression on Will's face was very unpleasant while Chris patted his back. After the burp we looked at each other very surprised. I don't think either of us thought it would work.

Napping with his new WubbaNub pacifier. It has saved me several trips across the room to his crib because it doesn't fall out of his mouth anymore!

*surgery update #6

Yesterday: skin was more pink, off Vapotherm, one more IV was removed, was awake for several hours, used his pacifier for several hours (good for keeping his suck exercised as well as helping prevent oral aversion), and did some smiling (only in his sleep though - he must have been having happy dreams)

Today: color looks even better, kicking his legs again, will be trying to eat by mouth, is off oxygen (!!) and would be on his way to a regular room if the cardiac floor wasn't full right now. He is even watching a little t.v. The hospital has a channel with classical music and nature sounds with scenes of mountains and oceans and snow, etc. The nurse turned it on so he could have something to listen to but he appears to be watching as well. I don't even know if he can see anything at that distance, but he is definitely fixated on something.


Some of the last things on the checklist are losing the chest tube, weaning off pain meds, and removing the pacing wires (still there in case they need to use the pacemaker again).

  I think babies really do bounce back faster than adults.

So far this is what I know about going home: He will need least 1 medication for a few months (Lasix for fluid retention), we will have to wash his incision with Dial soap every day, and we can't pick him up from under the arms for 8 weeks. This will give his sternum time to heal. 

 Chris attempting a nap today on the uber uncomfortable chair bed.

Nap attempt #2: successful

Father and son napping together.

Since Will's lungs are still a little wet he even makes a noise that resembles a mini-snore.

*surgery update #5

I apologize for not having an update on Will yesterday. I will summarize that day: he was very swollen and didn't look like himself. He slept most of the time but we did see him open his eyes a few times and move around some. They are still managing his pain well which means he isn't very aware of his surroundings. Every now and then they will remove something attached to him like an IV in his foot, one of the medication drips, or the sat monitors attached to his forehead. The first part of his recovery was difficult. They reassured us that all the things he experienced were within normal expectations. At different parts of the day we would hear that he had a fever, fluid in his lungs, or his blood pressure was too this while his heart rate was too that. It's pretty amazing how a heart can immediately start to move blood through the body again so efficiently. So of course there are things like fevers and irregular heart rates now and then. Speaking of his heart rate...he did not need the pacemaker for very long the other day. They keep it nearby just in case.

Today is a totally different story! His face now resembles the old Will. His eyes had been so puffy that there was no crease in the eyelid. Now they look the same as before and he has them open. They removed the ventilator yesterday evening (hallelujah!) and he is on the Vapotherm [ higher oxygen levels that are heated and humidified) again. As of now the monitor says 8.0 liters per minute of 50% oxygen at 34 degrees Celsius. He started out with 100% oxygen yesterday. Just like in the NICU he will step down to regular oxygen through the nasal cannula and then to room air as he gets better. Since his mouth is free he is sucking away on his pacifier as I'm typing. I was happy to see them take the ventilator out of his room completely. Although this one was a different type than the one in the NICU and didn't make annoying sounds, I was glad to see it go.

We can't take pictures of the equipment, so I got a back view from where we sit.

When the vent was removed it was cute to see him get his voice back fairly quickly. First his face looked like it was crying but no sound came out. Within a few minutes he would make small noises that were really quiet. Then it turned into a squeak. He is still at the squeak level but it works for him. If I'm in the room but can't see him I can tell the pacifier has fallen out of his mouth by the tiny squeaking grunt he makes.

The information they give us here is luckily filtered through our experience rather than theirs. By that I mean they reassured us in several different ways that his partially collapsed lung is not that big of a problem. To me that sounds like the worst thing he has experienced. There are a few different things they can try to re-inflate it and we'll keep you posted on that. When we listened in on the team's report during rounds no one seemed concerned about it at all.

We won't be able to hold him again until his chest tube is removed. That is what drains the excess fluid from around his heart. Of all the things attached to him that one is the least pleasant for Chris & I. Although he has been getting nutrition through an IV (TPN like in the NICU) they are putting a feeding tube in again and will start to feed him today.

The other sign that he is improving is that he no longer has one on one nursing care. In the best cases that only happens for the first 24 hours after surgery. His lasted a couple of days longer than that due to needing a lot of attention as well as his room assignment. He was at the end of a hallway and the baby next to him still needed one on one care too. This morning he was moved to a different hallway - still in the PCCU - but his nurse is also taking care of the baby in the next room. We are glad the nurse he had yesterday came with him to the new room! She also works on the floor with the regular cardiac rooms that surgery patients step down to when almost ready to go home. She is the nurse that admitted him when he was there a few days in March, as well as the charge nurse there during the end of last week. Obviously we are starting to see even more familiar faces around the hospital. Some families but mostly staff. I discovered that our cardiology social worker is also from West Tennessee and we have mutual friends. Having these kinds of experiences helps us not dread being at the hospital so much.

 Our happy colorful notes from you!

 Special thanks to Chris' coworkers at NDC who continue to be so supportive, as well as the Durham, North Carolina chapter of the Baby Will Fan Club (Deborah Hackney, President). I can't forget to mention their satellite members Bon and Debbie who I hear are vigilant Will supporters in Chattanooga!

Hello from a mending Baby Will!

*surgery update #4

His name sign on the door of his PCCU room:

After surgery kids go to the PCCU (Pediatric Critical Care Unit). This hallway mostly has children who have also had heart surgery. 

Will is doing okay. Recovery is much more difficult than waiting for his surgery to be over. It's hard to see him like this and not be able to hold him. At the nurses suggestion we took some pictures in case he wants to see them when he's older. Although he looks rough he is resting comfortably and we know he won't remember any of this. We will certainly never forget what this was like. Hopefully we can hold him soon after the ventilator is removed.

We have seen him open his eyes some but he mostly sleeps. This morning he has been a little swollen so his eyes are puffy and his arms and feet are noticeably bigger. But still in a cute chubby baby kind of way.

I don't think he is improving at a record pace, but it could be much worse. I misspoke before about him not needing a pacemaker. I had forgotten that the pacemaker wires were attached to his heart during surgery just in case they were needed to help regulate his heart rate during recovery. He had some abnormal rhythms last night and they used the pacemaker for just a few minutes. Today that happened again - this time the nurse described it as one part of his heart not communicating well with another part - and the pacemaker is back on, this time for several hours. I think everyone leaves cardiac surgery with pacemaker wires but only a small percentage need one permanently. Temporary help from pacemakers is more common.

On the upside, his incision looks great. It is 2 inches long with very little stitching. It is a red line covered in dermabond that looks like a liquid bandage. Here is a Vanderbilt article from a few years ago with a picture of a little boy whose incision has healed into a barely noticeable scar. The doctor in the picture is the surgeon who worked on Will yesterday.

On Friday we met with a Child Life Worker whose job it is to prepare a family for surgery. Since Will wasn't interested in being prepped (he was too busy staring and smiling at his mobile) she showed us a picture of a baby right after surgery. She explained that this time would be different from NICU rooms in that his crib is in the middle of the room. That way the equipment can be all around him. There is much more equipment, tubes, wires, meds, and noises than he ever had in the NICU. Some monitors are hanging from the ceiling and there are 3 freestanding poles with wheels on the floor that are holding his medicines, ventilator, etc.

She also showed us a close up picture of the incision and chest tube that drains fluid from inside his body. Then she had a picture of a little girl one year after surgery. The scar had healed really well! Last she showed us a picture of a little boy about 5 years old. He was SO proud to show off the scar from his OHS as an infant. The Child Life Worker said that when she asked if she could take the picture he took off his shirt before she could ask his parents to sign a consent. He jammed his hands down in his pocket and gave her a huge grin. Seeing that is enough to make you want to get your child's heart fixed. :)

Speaking of ventilators, sometimes babies are able to do without it as soon as a few hours post op. When we saw him around 4pm they said the plan was to try to wean Will off of his Tuesday morning after rounds. But by this morning his status was such that they now think it may be tomorrow. They say he is doing most of the breathing work and it is on a low setting.

Taken the day before surgery. Happy boy!

You can't see them but he has all those little leads with wires on his chest just like in the NICU. The brace on his foot is covering the newer IV port. Of course after surgery he has much more than one IV.

I included this last picture because I think it's cute that his shirt couldn't cover his chubby tummy.

Announcement: Will is accepting artwork from his little friends to decorate the door of his room. It needs to be the size of a regular sheet of paper to fit in a plastic protector sleeve. You can mail it to our house. Or if you want please visit the hospital's website: http://www.vanderbiltchildrens.org/ to send him an E-card. They will bring it to us and we will show them off on his door. I haven't tried this and won't be sharing my email address or his room number online so please use William rather than Will under patient's name. Maybe that will make it easier for them to find him. And of course after he is discharged these will be saved for Will to appreciate when he's older.

Thanks again for all the emails, text messages, and voice mails telling us that you are thinking of and praying for Will. We are very grateful.

*surgery update #3

Dr. Bichell just told us that everything went routinely. There was some muscle that needed to be cut away before they could see the shape of the valve that needed work. Until that was done and they could see the valve better they weren't sure of the outcome. He said the valve looked good, they were able to use it, and he shouldn't need further surgery. Hooray!!

He did say that there are still several things that could happen - bleeding, rhythm problems, etc. But Will's heart is strong and he couldn't have a better start for the recovery process. It's nice to know that several things are behind us - he doesn't need a pacemaker and will probably never have another open heart surgery. The doctor talked to us at 2pm and said we may be able to see Will in an hour and a half. In the meantime we're trying to update people by phone and email.

Thanks so much to my parents and friend Melody that came to wait with us, as well as all the support we got electronically! We're grateful for the science that enabled Will to get fixed as well as the technology that connects us with all of you!

*surgery update #2

We just got a call saying the surgeon is almost done with the repair and they will soon take him off by-pass. It will be a few more hours until we can see him. The surgeon will meet with us to tell us how it went, what they found, and what to expect long term.

*surgery update #1

Although we went to the pre-op area with Will before 7am, he wasn't taken into the OR until 9:45. There was an emergency and Will's surgeon was needed.

We got one update on the waiting area phone that everything was fine. Then Chris saw one of the anesthesiologists in the hallway who said it was still going "perfectly".

More when we know more. Thanks to everyone for the prayers! I thought I would want to spend a lot of time updating the blog and putting up some recent pictures but we're finding that we would rather play on the computer or do other things to stay distracted.

*there's a little cooperator continued...

One of the EMTs had heard of TOF so she asked questions and talked to me during the trip which made it go quickly. Before leaving on the stretcher Will had been getting oxygen from a little mask and sometimes from what they call blow-by. Meaning they just hold the oxygen near his face. I don't think he had any oxygen during the scene on the stretcher, but when we got in the ambulance he was given a little tiny oxygen mask. It was so cute. I would compare it to a walnut cut in half. By then his sats were in the 90s and he was back to looking and acting like himself.

We waited in the ER a short while and Will got an IV. They aren't using the IV for anything but drawing blood but they leave it in in case they need to give him medicine quickly. Which makes sense because it takes upwards of 20 minutes to get one in him. He also got some X rays and we were asked several times to describe what happened during the Tet spell. Then we were transported to his room. That is a fancy way of saying I carried him while we walked behind someone who led the way.

Since then he has been in a crib with a mobile hanging overhead that makes him ridiculously happy. He smiles and kicks for hours at the mobile. His naps and feeding are smiliar to what would happen at home but just like us, he doesn't sleep quite as well. We can get him out of the crib to hold and rock him but we can't walk too far away from the monitors he is attached to with cords. Thankfully the nurses on the night shift feed him for us so we can get some sleep. There is a couch bed for sleeping and Chris and I are taking turns spending the night.

Will getting a feeding. You can see the bag of formula hanging over the pump on the right. Also, you can tell he is mesmerized by his favorite thing - the mobile!

Other events here have included an EKG, more echos of his heart, and his pediatrician coming by to visit (on a Saturday!). The hospital stay overall has been good. We are more comfortable and know our way around. Will is old enough now to appreciate toys and will sit very still while being read to in the rocker. We have enjoyed the nurses assigned to Will this time around.

Right after being admitted, we were asked if a student could take Will's history. This was the student's first case so he was excited. The next morning he presented Will's case during rounds and the resident and attending cardiologists quizzed him about different things: what are the four parts of TOF, what would be done if Will had another Tet spell, etc. By hearing the answers we get to learn along with the student. For example, a typical heart with TOF will be shaped like a boot. Sometimes it isn't but conveniently this student got to see one first hand from the echo taken of Will's in the ER. Just another example of how cooperative Will has been! ;) A textbook case study in the boot shaped heart. Also, we've been told that he has a "classic" sounding murmur.

Day 1
The green sock is covering the IV port in his arm.

Remember: pictures with smiles will also be blurry due to his excited body movements.

This so-called gown was useless. It made him sweaty and stayed bunched up behind his head. When he was lifted it resembled a cape. Despite being a pain it was fun to call him Super Will With A Yellow Cape.

Taking a nap Saturday. A nurse will periodically flush his IV to make sure it isn't clogged. That day it was clogged so it was removed and he got a different one in a different spot - his foot. In the meantime he got really comfortable for his nap.

Is anyone else noticing how chubby he is looking???

Surgery will be early tomorrow morning. I will probably be on the computer some to pass the time. It should take between 4 and 6 hours and we will get updates every 1-2 hours. I'll try to share the updates here.

*there's a little cooperator

Here's the story of how Will's surgery date was changed. Not only to inform our friends and family but so Will can read the story himself one day.

Monday Will and I met with a dietitian to see if some changes can be made to his feeding schedule. She asked us to feed him every 4 hours instead of every 3. Oftentimes kids with NG tubes are on a continuous feed during the night with the help of a pump. As I mentioned before we were still waking up at 1am, 4am, and 7am to hook him up to the pump for a 30 minute feeding. It was never the plan to do so for this long, but he became less interested in eating by mouth instead of doing so all the time . The dietitian wanted him to be weighed at the pediatrician's office on Thursday so she could calculate his growth to see if could still grow well with a decrease in daily calories. The hope was that with less calories he could still grow but also get hungry and have the desire to eat!

On Thursday as we're driving up to the pediatrician's office to get his weight checked for the dietitian he started to fuss and did so off and on as we got out of the car and into the building. Will is usually easy to settle so I was confused about why he got more upset as I tried all the things that usually calm him. When I changed his diaper in the bathroom, he was screaming and had the color changes to his skin, lips, and tongue that we were told would happen if he had a Tet spell (blue/grey/somewhat purple). Tet spells are specific to his heart defect TOF. When the medical technician called us back for the weight check, I asked if she saw how his color was off and she got a nurse. The nurse took him to check his oxygen saturation which was in the 50s. As I've mentioned, a good oxygen saturation is 100 but it's normal for Will's to be in the 80s and 90s. So Will got a little oxygen mask and me and 2 nurses rocked, swayed, and shushed him until he calmed down.


Of all the places in the world to have your first and probably only Tet spell Will could not have been more cooperative by making sure it happened at a doctor's office! That way he had the benefit of monitors, oxygen and most of all HELP. The pediatrician said that she was glad we were there when it happened. I didn't want to argue with her about who was more glad about that so I just smiled and said "Me too".

The pediatrician spoke with our cardiologist (I am so glad that they already know each other and have for years) and they decided we would go to the hospital to be admitted again. To keep me from having to drive while unable to keep an eye on him they suggested we both go in an ambulance. This is the funny part of the story because they wanted me to keep holding Will since he was calm. So I get on the stretcher sitting straight up with my legs straight out in front of me. Will was lying in the crook of my arm like a bouquet of roses. When it was time to push the stretcher, they raised it so high in the air I was looking down at the top of everyone's heads. I think the EMTs were bored because all 6 of them followed us the entire way. The whole spectacle was like a mini Teapot Festival parade. The elderly people smiled and waved and of course I waved back at them. All that was missing was a marching band and candy for me to throw at the onlookers waiting to see their dermatologist.
 

Will's parade route

Story to be continued...

*there's a return to his first home

Will is back in the hospital. His surgery has been moved to Monday morning. The good news is that he is happy and comfortable right now. He isn't in any pain but is being observed in a regular hospital room until Monday. After surgery he will go to the PICU and when he is stable he will return to this same floor where the heart babies and big kids stay. We will meet with the surgeon this afternoon to hear the details about what will happen. Sometime after that I hope to get a chance to give a better update. Thanks to everyone for your prayers and well wishes!

*there's a pretty spring

Walk with Mommy at Centennial Park on Thursday April 1st:

There was almost as much walking as there was picture taking. :)

These can't do justice do the trees and forsythia.

Nashville's Parthenon

Mommy's favorite.

Too sleepy to enjoy the canopy of cherry blossoms.

So sleepy in fact, that he didn't notice the VERY loud honking of the geese overhead. Other things he missed:  all the runners going by talking about training for the upcoming marathon, us walking past a car that was blaring mariachi music, then walking past one that was blaring bluegrass music even more loudly. And lastly, I saw a little girl eat a tulip. :)

Back home taking a nap.

Not quite as tall as my buttercup yet! 

(Or "daffodil" for you Katy the purists.)

*there's a really big bill

Here is one of our EOBs from Will's stay in the NICU. Keep in mind that this only covers November 2nd through the end of 2009. He was there for about 6 weeks in 2010 too. We obviously don't have to pay this amount, but wow!

Thanks so much to Nana for sending Will a care package for Easter! It is always fun to come home and have a package waiting for us. It has been difficult to predict what sizes he will wear from month to month. Tomorrow he will be 5 months old and he's comfortably wearing size 0-3. It's a little sad to me that he can't wear newborn clothes anymore!

Will saw the pediatrician Wednesday and he has gained even more weight! 11 lbs, 2 oz. This is the 5 kilos the cardiologist has been waiting on for awhile. Finally he has picked up some speed! On Friday it was 10 lbs, 9 oz. They kept telling us that babies gain weight better once they get home and I think that is now true for us. The best part about this gain is that it improved despite Chris and I both sleeping through the occasional feeding over the weekend. We are lucky that my mother found us a baby scale to use at home to make sure he keeps gaining between weigh-ins with the doctors. We use it frequently. He didn't enjoy it very much at first but now he knows what to expect and actually smiles at me while he's lying on the scale. We still feed him every 3 hours. This has been difficult for us to keep up with since he is mostly fed by tube and isn't waking us up crying to eat. In fact, we're a little envious that he gets to sleep while we have to keep waking up! He sleeps from 7-8 hours at night now....right through his feedings at 10pm, 1am, and 4 am. His diaper gets changed during the night as well but he doesn't wake up. We are already making some changes to how we feed him and once we work with the nutritionist I think we will become even less strict with the schedule. And yes, we could have strayed from these recommendations already but we wanted to see him put on weight!

Thanks so much to everyone for continuing to check in with how we are doing. We are so grateful for all the baby gifts and food (we have ESPECIALLY enjoyed the food!!!) we received and it reminds us of how loved we are.