Ayden, meet Outside. Outside, meet Ayden.

As Allison has mentioned, Ayden went on his first adventure over the weekend.  With the help of his nurse, Margaret, Ayden got to take a trip around the Acute Care Pod and even go outside for the very first time.  Yes, almost 11 weeks into his life, Ayden set foot was carried outside for the first time.  This was his first experience with outside air, the sun (which was hiding behind clouds), and a breeze (the soft wind blowing in his face made him squint the whole time).

I have some video of his trip through the hallways of the pod, but I can't get it up yet because I need to find some proper video editing software.  It's currently too long and too big of a file to post here.  We did take some pictures while we were outside, although, as it turns out, the video camera doesn't take very good pictures.  The better pictures are from when we went back to his room and while we were waiting for him to get hooked back up to his stationary monitor.  This is the first time I have held him away from the side of his bed since the day he was born.

More Than Just Look at Him

When Ayden had his heart ablation, many of us waited in the OR waiting room on the third floor. Bryan and I blogged updates during that time, but I also wrote an entry about God's goodness and referenced the amazing nurses and staff that He has placed in Ayden's life. Among those people mentioned was Margaret. At the time the original entry was written, Margaret had only been Ayden's nurse for one day, and because he was so sedated, she got little quality time with our charismatic (and flirtatious) little man.

Margaret has now had Ayden for four straight days, three as his day nurse and one as his night nurse. She has officially gotten to do more than just "look at him." Ayden is quite enamored with Margaret, and he allows her to hold him on her chest. He holds tightly to her Grover jacket and nestles into her. (He won't let me hold him like this; I got a nice--or an angry-- little vagal response the last time I tried.)

Margaret attached Ayden to "the box" on Saturday, and she took Ayden on his first big adventure. Bryan will post more on this later.

Rock 'N' Roll Bear

Ayden's Rock 'N' Roll Bear is almost as famous as he is. The bear plays MP3s, and his daddy has downloaded alternative rock and hip hop onto its memory. Ayden is not a fan of lullabies and has always loved less age appropriate tunes, even when he was in the womb. Rock 'N' Roll Bear, dubbed such by his nurses, either causes Ayden to dance or to sleep. He doesn't discriminate.

Aunt Elise & Uncle Phil, thanks for my Rock 'N' Roll Bear!

And my favorite...

(He was mad at me.)

New Feeding Protocol

As per July 1st, the hospital has a new feeding protocol. Since Ayden is still a resident at Children's, he is subject to said protocol. According to the new standard, Ayden must be able to take half of his feed by mouth before he is able to go to bolus feeds for the full day. Until that time, he does bolus feeds three times a day (10:00, 2:00, and 6:00) and continuous feeds overnight. The continuous feeds overnight constitute 2/3 of his daily intake, and according to the staff, requires no work for Ayden's body to digest. Last night Ayden threw up toward the end of his continuous feeds; his belly has never had that much formula for that long, so it could take awhile to get used to it. (The most Ayden has had over a three hour period is 65ml; this continuous feeding regiment requires 90ml over three hours... but he continuous feeds for twelve hours!)

I'm hoping he doesn't have to get used to the continuous feeds. I am praying that Ayden will be able to demonstrate that he is capable of eating at least half of his Cheez-Its in the very near future. One of the discouraging aspects of the new protocol is that it doesn't allow for many opportunities for Ayden to practice bottle feeding, and it also doesn't provide enough time between continuous feeds and bolus feeds for Ayden to be hungry.

If Ayden is not full-day bolus feeding (these boluses CAN be a combination of bottle feeding and feeding tube) by the time they want to send him home, they may consider doing a procedure called Nissen fundoplication. During the fundoplication surgery, the surgeon wraps the gastric fundus (upper part of the stomach) around the lower esophagus. This prevents the flow of acids from the stomach into the esophagus and strengthens the valve between the esophagus and stomach. The purpose of the procedure is to stop gastric acids from backing up into the esophagus as easily, which means there is less fear of reflux and aspiration. (By the way, the patient can still gag; they just don't gag anything up, so doing the procedure doesn't take away the physical sensation of reflux.)

We are fearful of the procedure for two reasons. One, going into surgery is dangerous, no matter who the individual is; if you add in the fact that Ayden is a hypoplast, it becomes that much more serious. Two, the procedure would require Ayden to once again be intubated and spend time in the PCCU; Ayden has shown that he does not do intubation well; it likely causes vocal and feeding issuses, and since Ayden fights the tube, his throat suffers that much more.

Worry and fear are not of God. Thinking about the "what ifs" are not only unproductive, but they suggest that God isn't capable of once again shining through Ayden. Besides, our little boy is notorious for surprises and strength. Again, we are prayerful for Ayden's continued progress with the bottle!

Miracles on Children's Way

Your prayers are heard. Ayden's life continues to be a miracle.

After Ayden's cardiac arrest, the doctors and nurses have monitored a number of Ayden's organs, including his lungs and (obviously) his heart.

LUNGS: For awhile, Ayden's chest x-rays revealed some cloudy-looking lungs, and he was initially unable to cough or sneeze to work up congestion, so they began a therapy called CPPD, or chest percussion and postural drainage. I refer to this therapy as "hit therapy" since that is what it looks and sounds like. Ayden doesn't mind the therapy if the the respiratory therapist remembers to confine his/her efforts to Ayden's back. Sometimes Ayden will even fall asleep during this process. If, however, the RT temporarily loses his/her mind, and he/she touches Ayden's chest, Ayden's face turns eggplant, and the therapy is officially over. The therapy has been going on for a couple of weeks now, and Ayden's chest x-rays and clinical assessments now show clear lungs. Ayden is also now coughing and sneezing, though the process obviously still hurts him and sometimes causes him to gag or cry.

I'm sure that Ayden will not miss the late night CPPD, and his mama and daddy are thrilled that we have yet another praise to share with you all!

One of Ayden's day nurses, Havilah, made this sign to go on Ayden's bed.

HEART: Ayden's ECHO on the 19th showed a heart clot, so they began him on Lovenox shots to help thin his blood. These shots were given twice a day in the fatty parts of Ayden's legs. (This process reminds me of insulin shots for a diabetic.) We were told that Ayden would receive these shots for 4-6 weeks, and the nurses have been periodically drawing blood to test the therapeutic levels of the drug. Yesterday's levels were too low, so the resident increased the drug amount. Ayden had another ECHO done today, and the clot was GONE, even though Ayden endured the shot for LESS THAN two weeks, AND his blood levels had suggested that he was receiving non therapeutic levels! Bryan and I were overjoyed to hear the wondrous news! (Plus it meant that neither of us had to learn how to give Ayden the shot! PHEW!)

MORE PRAISES: Bryan posted some information regarding our care conference. The meeting is properly named; I certainly felt like our family was/is cared for and cared about. The shear number of people that attended the conference was overwhelming and just super cool. Some of the opinions and events shared that day reminded me just how miraculous Ayden's life is. He has half of a heart. The fact that he can sustain life is alone a miracle. If one adds in the many other medical experiences that Ayden has had, one has to know that God has had His hand in it all. He has never forsaken our little one. I can't get over the fact that Ayden's low temperature during his cardiac arrest helped to preserve his brain, kidneys, and lungs. I can't fathom how well Ayden has recovered from 48 minutes of CPR, a heart rate low of 20, and ECMO. (Whoever contributed to that CPR, you ALL did an amazing job!) I can't believe that he endured a recannulation and a heart ablation while on ECMO. I have no idea how he passed a video swallow study test after having failed one badly the week before.

Ayden should NOT be alive.

But he is.

And I'm beginning to understand that he actually SHOULD be. To think that he shouldn't be is to deny that God is awesome. I have faith that God is mighty, and I will continue to ask Him for the everyday victories.

We experience your prayers with every moment of Ayden's life. Ayden continues to grow strong, and he's so happy. For two days now he has smiled incessantly. He hasn't wanted to sleep during the day because he's afraid he'll miss something new and exciting. He crashes at night because he has played so well all day. He has also begun to develop better coordination with the bottle and took 12 ml at both feeds today. Blessings abound.

God has heard your resounding voices. God has shown us mercy. He has made Ayden a witness of His love. That was my prayer for Ayden's life in the beginning.

Thank you for being part of Ayden's miraculous life.