Fabulous Four

Ayden is doing well. His sleep has vastly improved, and he isn't vomiting nearly as often-- usually no more than once a day. He is, however, gagging and wretching as much as he was on the Monogen formula, but the poor kid just has terrible reflux. Supposedly, most babies experience less reflux when they turn one. We are hoping that will be the case for Ayden.

Everything goes directly to the mouth.

Our friends and family feel more comfortable interacting with Ayden. He doesn't seem as fragile, I guess, when one can pick him up under the arms or sling him to one's hips. He seems to have gotten more visitors as of late, and he handles them all well. One of the advantages of living in a hospital for so long is Ayden's strong social skills.

Daddy's Boy

We continue to work on rolling and sitting up. He rolls side-to-side and can get his lower body over but holds back on coming around completely to his tummy. He will sleep on either side now. He can sit up on his own for a few seconds before he goes tumbling backwards. I sense that Ayden doesn't like sitting up as much because his reflux seems worse then, but he also enjoys being better able to play with his toys.

We have been fairly busy over the past week. Daddy always tells me that I am Ayden's medical record; I have become his social calendar and secretary as well!

FRIDAY
On Friday evening, my mama, Elise, and I made the haul to Lebanon, TN, to take part in a fundraiser for the Jordan Hackett Foundation. The foundation was started in memory of Jordan Hackett, a baby with hypoplastic left heart sydrome that went to heaven after getting a blood infection at four months of age. Contributions made to the foundation are given to Vanderbilt Children's Hospital, the Nashville Ronald McDonald House, and the American Heart Association. The foundation is responsible for providing meals for families of children in the PCCU, as well as for sponsoring PCCU sleep rooms.

Diana and me with Karen Hackett, mother of Jordan Hackett

Bryan and I have lived at the Nashville Ronald McDonald House; we have slept in the sleep rooms; we have taken advantage of meals provided at the hospital. When Jude's mommy, Diana, invited me to the event, I wanted to be part of it. I wanted to support all the good things that helped to keep us near our baby while at Vanderbilt. I also wanted to encourage others in the cardiac community.

Diana & Me

At the fundraiser, we painted abstract hearts. One of the coolest parts about the paintings was seeing how different and beautiful every person's heart was... seems fitting for an event celebrating and supporting the amazing lives of children whose hearts are different.

Elise, Mama, & Me

Information for the foundation can be found at http://www.jordanhackett.org/, or for you Facebookers, you can look up current information on Facebook.

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SATURDAY

On Saturday, Bryan and Ayden had a boy day so that I could spend time with my mama. We ate out and went shopping. Super fun!

Grancee loved holding Ayden like this.

Saturday night Elise and Phil came over to spend time with our family. It's the first time that they both have been able to come over since Ayden has been home. Ayden especially enjoyed the tango with Phil. I don't know what we would do without the friendship of Phil, Elise, and their two boys.

SUNDAY

A friend of mine named Courtney has been encouraging me to make food for Ayden. Her thought was that he might like it better than Gerber baby food. Since I am willing to try anything that might encourage Ayden to eat, my mama and I spent Sunday morning making pears and sweet potatoes per Courtney's recipe. (Okay, for those of you that know me, you know that my mama did most of the work. I hate the kitchen.) At the end of the preparations, Ayden sampled the pears. As with all feeding, he hates people forcing food to his mouth, but once it's there, he smacks happily.

We learned that you don't need nearly as many potatoes as you need pears.

MONDAY
Diana and I decided that we needed to make Jude and Ayden's playdate a regular thing. On Monday, we watched Jude reach for every toy that Ayden was playing with, and we observed Ayden's jealousy over having to share his mommy with another baby. AH! The lessons to learn!

Jude got to go sockless, so Ayden was yanking at his socks.

Typical photo of both: Jude's fingers in his mouth & Ayden's Wubbanub in his! Teething!

Jude is enamored by Ayden's tube.

Another Clinic Day Come & Gone

I started getting ready for cardiology clinic last night. I woke up at 6:45 this morning to finish what I had started. The goal was to leave at 7:30. Ayden had other plans. He threw up on two separate outfits, and we didn't leave until 8:00. Thank goodness the day got better.

Ayden's chest x-ray was perfect. After nine blood pressure attempts on his four extremities, I guess they got the ones they wanted. (I'll never understand the blood pressure process; if one tries something enough times, doesn't the law of averages suggest that one will get the number one wants?) His sats were in the 80's. His weight was 8 kilos, or 17.6 pounds, which was bigger than at the pediatrician's office. Dr. Kavanaugh was pleased with where he was and decided not to do an EKG or ECHO or bloodwork. (I was expecting all torturous three.) In the end, we got to go home. (Always a good thing!) Ayden is not scheduled to return until mid-February.

The new formula is still on trial. While Ayden seems to feel better, he continues to vomit during the day (not at night). Throwing up is preceded by coughing, and once anything comes out, it all comes out. He then acts like nothing ever happened; he's once again happy-go-lucky Ayden. However, losing too much of his feed volume has potential to affect his growth. We need to give Ayden an opportunity to work out this struggle before looking at other formulas.

One additional topic that was covered at his clinic visit was his willingness (or lack thereof) to feed by mouth. Though Ayden has the natural mechanics for eating, he does not choose to eat. I don't know how you help a child want to eat; I don't know how you explain to a nine month old that taking a bottle will fill his empty belly. Bryan and I are having a more difficult time moving the feeding process along, so the decision was made for Ayden to see a feeding therapist. I have mixed emotions about Ayden going to a feeding therapist, but I certainly choose that over a G-tube surgery... which is where Ayden would be headed if he continued to refuse to eat. His NG feeding tube was never meant to be a permanent solution.

And... in the background-- or maybe foreground-- there is always the possibility that Ayden's lymph system hasn't had enough time to heal. We pray that he remains healthy and able to stay home.

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One more thing: I would be remiss if I didn't say that Ayden has been amazingly well-behaved at all doctors' visits this week. He has been attentive, charming, fun... just fantastic. These visits are not at all baby friendly, and he handled himself beautifully. I'm so proud!

Nine Months

Ayden's saturations remain normal for him. He slept fairly well last night. He has been a happy little boy. He isn't arching his back, and he has only gagged and wretched twice today... both self-inflicted with his finger or his pacifier. He has, however, thrown up three times. Once was a result of an incident of gagging and wretching. The other two may have been induced by reflux. We think that Ayden has a hard time keeping from vomiting because the new formula has such a horrible taste and smell. If he experiences even slight reflux, he vomits. (Are you thinking what I am thinking? Bad tastes and smells don't exactly promote eating.) I think he'll overcome this reflux issue; already, I think he feels better than when he was on the Monogen formula.

Happy Nine Month Birthday, Ayden!

So Far, So Good

Ayden seems to be doing fine with his new formula. Dr. Hood said that he would scream at us if the formula was making him uncomfortable. He hasn't been doing any screaming. On the contrary, he's been quite happy. In addition, Ayden hasn't done any gagging and wretching, but he has thrown up once; the episode wasn't that big of a deal, but I realized quickly that a new formula brings new smells... never good ones. All in all, so far, so good. Only time will tell if we need to once again worry about fluid buildup. Please continue to pray!

Evening Prayer & Fun With Friends

Ayden & I pray every night before he goes to bed. He usually falls asleep before I get to the end; perhaps God washes him with a peace as we lift up praises and requests. Tonight we rejoiced for PROGRESS WITH THE BOTTLE! Ayden took 20ml last night and 30ml this evening. He refuses to suck on the bottle during the daytime, but these two feeds are very encouraging. He is certainly capable, but he is obviously very stubborn as well. Bryan always says that we are glad he is stubborn for some things, but we wish he would tone it down a notch for other things, such as feeding.

We also asked for God to watch over Ayden as he STARTS A NEW FORMULA TOMORROW. Bryan and I took Ayden (and a list of questions/concerns) to the pediatrician today. Ayden's cardiologist requested that the pediatrician take care of everything that doesn't involve Ayden's heart, so today the pediatrician picked a new formula for Ayden. If you remember, Ayden was placed on Monogen formula in order to give his lymph system time to heal. Approximately two months have passed, so the repair should be complete. It's time for a new formula, and since Ayden has tolerated a milk protein formula, he doesn't go back to Elecare. Instead, the pediatrician, Dr. Hood, chose a formula between Elecare and Monogen, Similac's Alimentum. Though Alimentum is actually a formula intended for children with protein allergies, it is not as elemental as Elecare, and it does contain milk protein. Dr. Hood intends to work Ayden up to full cow's milk, but she wants to do so slowly. We appreciate this plan since Ayden was thrown into Monogen by necessity, and we aren't sure his body had the opportunity to learn how to digest milk proteins.

A new formula is scary. It is possible his body has not yet healed. If it hasn't, Ayden will end up back at the hospital. If it has, we are still prayerful that Ayden can tolerate yet another formula change. We wish there was a better way to find out if Ayden's lymph system has healed. I am admittedly nervous about the coming two weeks. Ayden sees the cardiologist this week, and he will have a chest x-ray. He is supposed to have another one next week. We should have an idea if this is going to work fairly soon after he begins. Please, Lord, keep our baby boy out of the hospital!

On another note, Ayden had some visitors this week. He and Jude got to play for a couple of hours. We, of course, took lots of pictures, but the boys weren't quite as obliging... at least, not at the same time. I am so grateful that Ayden has Jude, another baby to interact with, another boy to grow up with, that happens to also have hypoplastic left heart syndrome.

Ayden also met our friends, Cat and Ryan. Bryan and I were excited to have friends over to meet our little buddy and to spend time with us.

We are grateful that you continue to pray for Ayden!

Age: 8.75 months

Height: 27.5 inches - 25th percentile

Weight: 17lbs 4 oz - 5th-10th percentile
(Head circumference continues to be average.)

Father and Son

Vacation time I took over the holidays allowed Ayden and me to hang out more than we usually get to when I'm working.  Combining that with his continuing development produces some new things for father and son to do together.  Allison's already posted a picture of one such activity: Ayden as an airplane.

Ayden's getting used to us holding him under his arms has made that possible.  Just a few weeks ago I wouldn't have dared to lift him in the air like that.  Sometimes, he will even let me drop him down onto my chest.

He doesn't always enjoy the experience.  We are still working on getting him comfortable with being on his chest and stomach (one more thing he just isn't used to doing because of all the time spent on his back at the hospital).  As you can see from those pictures, by the end he wasn't too thrilled with where he was.  I post that last only because you can get a really good look at his first tooth.  (He actually now has teeth.  The second one has come in right beside the first, just like Jude, of course.)

While he may not always be a fan of lying on his stomach, he is always in for some air time.  He likes the airplane game, sure, but it pales in comparison to actually flying:

(At times, he gains enough air that Allison gets a bit nervous.  Not to worry, though.  We always have a nice, soft piece of furniture for him to land on.)

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The holidays, or rather some of the things we received over the holidays, gave us the means by which to purchase a new, much nicer camera.  Allison and Ayden were featured in most of the pictures taken during his last photo shoot, so we gave the new camera a test drive by getting dressed up (by our standards) and taking some "Dada" shots: