Ayden in Action

Haven't posted a video in a while. Enjoy.

Feeding, Tapering, Smiling, & Noise Making

This week has been mostly focused on bottle feeds, bolus feeds, and sedative tapers.

Right now, Ayden receives 80ml of formula every three hours. The goal has been to get Ayden used to a bolus feed of 80ml over thirty minutes. We started with 80ml over two hours and have decreased the time by twenty minutes every day. Because Ayden's tummy was full for most of the week, he hasn't been terribly interested in bottle feeds. Ayden responded more favorably to the idea today since his feeds have been over a shorter time period, and he has been more hungry by the time he has gotten to the next feed. Today he took his 10ml of bottle feed for the second time since he has been home!

Some great news: Ayden has a nurse come visit him at home at the end of each week. Yesterday she weighed Ayden, and he showed much better weight gain! It appears as though the formula increase was just the right amount! 

With regards to sedative tapers, one of the two sedatives has been completely removed, and the other is supposed to drop off tomorrow. He has handled the taper pretty well, so hopefully tomorrow will prove no different.

Bryan and I are pretty exhausted. Though Ayden sleeps eight to nine hours every night, we don't sleep that long or that well. Every noise Ayden makes awakens us. We are perhaps more jumpy than most parents. However, like most parents, we still deal with feeding an infant overnight. For us, it means going to get the formula from the refrigerator downstairs, filling the pump bag with formula, checking for tube placement (one can't just assume the tube is in his stomach), and setting the feeding pump; when his feed is complete, his tube needs to be flushed, and the bag with the remaining formula needs to be taken to the refrigerator. The only other thing that could wake us up overnight is the apnea monitor, which makes the most horrifying noise known to man. The machine has gone off maybe three times... for breathing, which naturally throws us into panic. Between the shriek of the monitor and the fear of Ayden not breathing, the experience is less than fun. I rush to Ayden's side to "look at the baby," and each alarm is proven to be false. Phew!

No matter how tired I may be or how discouraged I sometimes get, God brightens those moments with my sweet baby. Ayden smiles up at us to reassure us and give us joy. He makes the most beautiful noises now, and we converse with him quite often these days. He's trying so hard to tell us something, even if we have no idea what that something is. I just love him.

Mom, seriously, more pictures?

Okay, maybe one more picture!

Jude

As I type this, Ayden's buddy Jude is in the OR being prepped for the second of the three surgeries - the Bidirectional Glenn.  If all goes well, he will soon be out of the post-Norwood/pre-Glenn danger zone.  Please pray that it is so.

In case you missed it previously, you can follow Jude's progress here.

This Clinic Monday-- Eight Years

Clinic Mondays. We go to Vanderbilt packed, ready to to return to 6C, should Ayden's pediatric cardiologist discover something that we didn't or couldn't during our week at home.

Ayden started his cardiac clinic afternoon with a chest x-ray, which didn't indicate anything worrisome.

"Praise the Lord!"

He then was weighed, and he didn't actually gain very much; he was 5.1kg, and last week's was 5.0kg. Because he only gained 0.22 pounds, his feeding regiment increased more than the original scheduled amount.

Ayden also endured the torture of having his blood pressure taken 100 times. Okay, maybe that's an exaggeration (though not much of one). For some reason, they have to have a blood pressure for both legs and both arms. His first blood pressure is usually the best one. They always write that one down. Then they move on to the next appendage, and it never comes out good. They then try again, which means that Ayden begins to catch on, and he starts to squiggle. When they come up with yet another pressure they don't believe, they decide to try a different limb. By this time, Ayden gets mad. Anger, of course, creates high blood pressure. They decide that the machine they are using is not the best choice for Ayden, and they get another blood pressure contraption hooked up to him. Eventually, they realize that things aren't going well, and they try to distract him with a mobile that sings and dances, but Ayden will only be duped for so long before the whole process begins all over again. Today, they had to abandon taking his blood pressure until the END of the visit, and they got two good ones immediately. Phew! Even I sweat!

"Praise the Lord, O, my soul!"

Besides a clear x-ray, the other exciting news from today is that Ayden did fantastic on his bottle feed! Not only was he enjoying his Cheez-Its, but he was coordinating his suck, swallow, breathe. He even got angry with me when I took the bottle away. Ayden can now have 10ml by bottle before every feed. His doctor also moved him to twenty-four hour bolus feeds, so he will be eating on a typical infant schedule.

"Praise the Lord, O, my soul;
and all that is within me!"

So we left our packed bags in the car, and we pray for another healthy week!

"Praise the Lord, O, my soul; 

and all that is within me,
praise his holy name!" 
(Psalm 103:1)

 Ayden, I love your daddy too. Happy 8th Anniversary, Bryan!
We'll celebrate as a family together!

Adyen, the One Million Dollar Man

We received a summary of Ayden's hospital charges yesterday (the hospital charges - room, pharmacy, lab tests, etc - are tracked separately from the the doctors' charges).  The doctors' charges alone had already hit the 6 figure mark.  With what we received yesterday... hello, 7 figures.  As I discussed with a friend last night, for the first time in my life, an insurance company is now on the losing end of our little arrangement.  And still two more surgeries to go!

Of course, he's worth every penny of that.  He is such a good baby.  He is high maintenance only because of the set of hoops we have to jump through every day because of his heart defect.  Take all of that extra stuff away, and we'd be left with a three month old who sleeps a good portion of the night, throws a fairly small amount of rather short tantrums, and smiles a whole lot.  There are times when you completely forget about his condition.  I continue to be honored to be his father.  Every day he makes me proud.

***

We have been trying to work with Ayden on his development.  He is easily able to follow moving objects, or to follow stationary objects - like the ceiling fan - when he is moving.  Thank goodness he has a ceiling fan in his room!

He is able to locate what direction a sound is coming from and find the source with his eyes.  We have made a conscious effort to start sitting him up more and put him on his stomach more.  He is slowly exhibiting more control over his head.  He is getting better at holding on to things, like his WubbaNub.  He used to wear the rings as elbow bracelets, but now he can hook his thumbs around them and maintain his grasp.

Ayden is also starting to generate a wider array of noises.  Previously, his main form of vocalization was either to grunt or cry.  Now, he has expanded his repertoire to include more cooing-type sounds.  Although he is a long way from being able to generate anything close to a word, for the first time he at least seems to be attempting to communicate.

***

The process leading up to Ayden's second surgery has begun.  This past week his catheterization was scheduled for late in August.  This procedure is done before the next surgery.  We have not yet had a full blown conversation with his cardiologist about this stage yet, so I am not entirely clear on what they will be looking for with the catheterization.  I know it has something to do with checking the pressure levels in or around his heart and/or lungs.

***

We want to send out a special thanks to Jonathan and Nichole for bringing us dinner (and dessert, and a six pack) on Friday night.  It was all very good, especially the beer (I'm a big fan of Magic Hat Brewing Co. - I'd never had their summer brew before).  We continue to be immensely blessed by our friends and family and their willingness to help us out, even knowing they can't spend any time with us or Ayden.

***

Pleading with Dad to Make Bathtime Stop

Showing Displeasure with Bathtime

Immunization Day

Bryan sent Ayden and me off to the pediatrician this morning for Ayden's immunizations. I got about ten minutes from the house before I hit major traffic. Ayden only sleeps if the car is in motion; therefore, he was awake and beginning to get fussy. You see, Ayden's first sedative is due at 8:00AM, and his doctor's appointment was at 8:15AM. I was hoping to get to the office parking lot by the time his medicines were due, but rush hour traffic dictated a different path. I ended up pulling over to give Ayden his medication. He settled out, as did traffic.

Ayden handled his FOUR immunization shots well. He only cried when they were being given, and a little Mommy love comforted him back to smiling... and to staring at himself in the examination table mirror.

We got back to the house easily, and I got a bunch of these (see below) to encourage me at the beginning of my first day with Ayden.

I gave Ayden his first feed, and we are coming up on his second Tylenol dose. He has had a busy morning, and he fell asleep for the first time in his pack & play. He is now under my watchful eye. Please pray that his body handles the immunizations well.

He's Growing Up!

Ayden got to wear his Pumas to his cardiologist appointment on Monday. The shoes are a tad bit big, but the kid really has some large feet, so it wasn't too crazy for him to have them on. Yes, he is only wearing a diaper and shoes & socks in this picture. He originally had on clothes as well, but he got too sweaty in them from the tortures of the appointment and the heat of sitting in the carseat. (At the hospital, I had to put a new feeding tube in his left nostril because his right cheek was raw from the tape... You read that correctly: I put the tube in. It's the second time I've had to endure the tears!) Our little guy sweats a great deal when he is upset or when he is too enclosed. Sorry, Ayden, you got that from your parentals AND their parentals!

Ayden seems to have grown primarily in two locations, his head and his Buddha belly. The next pictures were not focused on either of those; however, you can see his belly portruding in these shots.

Ayden is very comfortable at home. He easily rules the roost. We only think we are in charge.

Bryan is trying to figure out Ayden's fascination with the ceiling fan, and then they find each other...

I'll never forget the evening that we tested the apnea monitor in the hospital. I had received the monitor the week before Ayden's cardiac arrest in preparation for taking him home. Since it had been a month since I had gotten instructions on how it worked, Nicole, Ayden's night nurse, decided to assist me in putting the machine through a test run. I had heard nightmare stories about how often apnea monitors false alarm, so to determine the validity of the alarms, I wanted to hear them in conjunction with the hospital monitors. When Nicole turned the machine on, it made the most horrific noise, and when she tried to turn it off using the same button, the shrieking continued. She then grabbed for the plug, but the monitor has battery life, so it continue to howl at us. In the meantime, people are coming out of the other rooms to see what is going on, and nurses have begun to show up in Ayden's room. Ashley, another night nurse, swaddled up the machine and ran for the nurses' break room. Ashley was able to determine the "off" mechanism, and all was well. I laughed hysterically at Nicole that night, and I have many times chuckled about the event since then.

Luckily, Ayden's monitor shrills at home only when we turn it on! Hooking Ayden up to the apnea monitor is part of our evening ritual. He looks like he has major chest muscles when you get him swaddled.

Tomorrow Ayden goes to the pediatrician for his immunization shots. This vaccine process is very serious business for a hypoplast. He has to take Tylenol every four hours for 24 hours. If we notice any slight changes, he is to go immediately to the hospital. Did I mention that tomorrow is also my first day on my own with my Ayden Baby?!?!?

Mind Dump

Here's some bullet point thoughts on a variety of subjects.

Ayden

• He is three months old today.
• He continues to do well, as evidenced by his successful clinic visit today.  Everything checked out, so we got to come back home.
• He weighed an even 5 kilos (a little over 11 lbs), so he is continuing to gradually gain weight, which is good.
• He is sleeping better (and longer) through the night now, thankfully.  I don't know if it's the swaddling, the slower sedative wean, or something else, but I'm grateful for it.
• He is still getting continuous feeds overnight, but we got the go ahead from his cardiologist today to try shifting towards bolus feeding.  We will start slowly (what he normally gets in three hours he will get in two, then have an hour break).
• His speech pathologist was out of town, so no bottle trial today at clinic.  This should happen at next Monday's visit.  As Allison has mentioned, his voice is almost completely back, so we are hopeful his throat is close to fully recovered from the intubation.  In turn, maybe this will improve his bottle taking ability.  He also now coughs without an indication that it hurts (and thus without gagging himself), another encouraging sign of recovery.  We shall see if this all makes a difference.

Being at home

• Being at home is great.  It took about 11 weeks, but being in the hospital had pretty much brought me to my breaking point.  I was becoming worried that 11+ weeks of fear and frustration would all get unfairly unleashed on the unlucky person to finally push me over the edge.  I'm glad it didn't come to that.
• Although I'm sure all babies are high maintenance when they are this little, Ayden is especially so.  Between the feeding and medication schedules, it seems as if we are always getting ready to do something for him or to him.  I also understand that because we basically took home a 3 month old, there are some things we did not have to deal with.
• Getting him ready for bed is an ordeal.  We have to get his feeds ready and hooked up, plus get him attached to his apnea monitor.  If we want to put him down at 8, we better have started the process by 7:45 at the latest or it ain't happening on time.
• It has been wonderful to be home as a family these past two weeks.  I am so grateful to have the amount of paternity leave that I do.  I have to return to work on Thursday, which will be hard.  I know Allison isn't looking forward to it.  She's worried about how she will do all of this "on her own." (She will do great.  I'm not worried about her capability at all.)

Having a hypolplast baby

• In short, it sucks.  Really sucks.  To be more specific...
• It hasn't even been two weeks and I already have a serious case of cabin fever.  When your out-of-the-house activities are limited to going through the drive thru, you feel pretty pent up rather quickly.
• We can't go out to eat, either with him or without him.  No going to the movies (there are about 10 movies that have came out or are coming soon I want to see, so this really sucks).  No going to church.  No spending time with friends or family.  No visitors.  No nothing.  I've played golf once this year.  In March.
• Thank goodness for Netflix and my 360, or I'd be going crazy right now.  I need those releases to keep me on an even keel.  I need the distractions.
• I freely admit the above sucky things are also selfish things.  What follows are equally sucky, if not moreso, but most definitely not selfish.
• Worrying that every tantrum, every cough, every sneeze, every bout of spit up (or worse: vomit), etc. will be the thing to push Ayden over the edge is no way to go through life.  It really sucks.  It wears you down and stresses you out.  You live in a constant state of heightened awareness, a constant state of fear.  Again, no way to go through life.
• What makes this reality all the worse is an epiphany I had a few weeks ago:  no one we know can understand what Allison and I are going through.  No one.  Yes, we have met other parents of hypoplasts.  They can relate to probably 90% of what we have dealt with, but not all of it, just like we cannot relate to everything they have faced.  Each one of these kids, despite having the same defect, has a different physiology and follows a different (i.e., smoother or rockier) path.  I am so grateful for their friendship, support, and understanding, but only Allison knows exactly what I face on a daily basis.  I could not make it through this without her.
• With that in mind, I cannot fathom how a single parent could survive this struggle without completely breaking down.  A single parent would have no one else who knew exactly how she felt and (maybe) a whole lot of friends and family who, despite their best efforts, simply will never comprehend what it's like to live this life.
• Don't get me wrong.  I by no means think we have it the worst.  There are thousands of sets of parents out there facing more difficult situations than us.  We at least have the potential for normalcy within two years or so.  Parents of children with Down Syndrome, autism, and other untreatable conditions have no such prospects.  They may never, in any real sense, know their son or daughter.  I commend them for the guaranteed long term struggles they must face.
• I'm also not saying we haven't been supported by friends and family.  We have.  Very much so.  And I am forever grateful.  My point is simply that while many people can sympathize with us, no one can truly empathize.  And that's hard.  Not only for us, but for our friends and family.

Adventures in Parenting

We dared to bathe Ayden again last night, and he did... great! He didn't start crying at all until the very end, which was when we attempted to clean his neck folds. (We ended up having to clean his chubby neck today instead, and he didn't even make a peep! Such a good baby!) Yet again, I forgot the camera to photograph bath time, but I think Bryan and I are going to need to show bathing improvement before we can bring a camera into the mix!

Ayden sleeps almost the entire night, so we think that the sedative changes were successful. We continue to swaddle him to keep him from smooshing his face while he sleeps. Check out our baby burrito!

Bryan and I are still trying to figure out our routine with Ayden. We think afternoons and early evenings are especially good for tummy time and play time. Ayden did exceptionally well with tummy time today. He didn't show signs of frustration at all; in fact, he looked like he was trying to raise his head and turn it. Ayden, of course, also saw the experience as an opportunity to play to the camera. He continues to be very expressive.

A "new" development is that we can hear Ayden cry. After his most recent extubation from the ventillator, he suffered some vocal paralysis. For quite awhile, we knew Ayden was crying only because his mouth was open, and his face was red (or eggplant, depending on how upset he was). Now Ayden cries almost as loudly as he did before the cardiac arrest. His cry is something to be thankful for.

Tomorrow is clinic day. It is an unfortunate necessity. Hopefully, all will be well, and we can continue our adventures at home!

The Prince on His Throne

Ayden's rocking chair sits in the corner to the right of his crib. My parents' neighbor, the Kolettis Family, gave us the white rocking chair, and my daddy, more famously known as G-Daddy, reupholstered the footstool. Bryan's mother, Gran, recovered the rocking chair pillows, and she made the Hungry Caterpillar pillow as well.

Bryan humored me a great deal with the white shelves in Ayden's room. I kept looking at a big blank wall, and I felt overwhelmed about how to make the space fit into the children's book theme. Once I decided on shelves, I then began asking, What color should they be? What length, depth, and height? What kind of molding is appropriate? Of course, the more questions I asked, the longer the contemplating became. Once the decision was finally made, the shelves had to go on the wall. Oh, but wait. When we got them home, the shelves were two different colors, white and cream. And when we got that corrected, it took the better part of a day to get the shelves on the wall. Bryan was such a trooper with the ordeal. He even helped me place things on the shelves, which was yet another task in and of itself. (Did I mention that I am a perfectionist?!?!)

Bryan and I purchased some of these shelved items, but friends and family also contributed to the room's theme. The pewter bunny came from my cousin Cory and his girlfriend Stephanie. The book, Guess How Much I Love You, came from one of my literature students, a fellow reader and writer named Harrison. That book's matching stuffed rabbit was given to Ayden by my cousin Madison. My mama, Ayden's Grancee, gave him 1, 2, 3 to the Zoo with lion hand puppet. Bryan's favorite book when he was a child was Jumanji, so you not only see the book but also a picture of Bryan and me reading Jumanji to Ayden while I was thirty weeks pregnant with him. Liz Power, the mother of one of my close high school friends, took the maternity pictures in Chattanooga. (She also took our wedding pictures.) The little mouse down by the floorboards was painted by Jim at my request. When I was little, I was obsessed with finding the mouse on every page of Goodnight, Moon. Courtney made the Roman shade to match the bed linens.

Above Ayden is looking at me. Below he has discovered a far more fascinating object, the ceiling fan. Ayden's is newly mesmerized by ceiling fans.

What do we do all day? We watch Ayden sleep (and him smiling while doing so).

Bryan boils the syringes we use for drawing up Ayden's medicines. He once told Havilah that this process makes him feel like a "germophobic heroine addict." She responded, "Isn't that an oxymoron?" Yes, yes, it is.