A Birthday Boy's Party

Wow did we celebrate! Wonderful family, friends and prayer buddies delighted us by their presence at Joey's first birthday party.

It was a beautiful day at a perfect location. Perhaps the best part was the open area and playground for all the KIDS!!! Actually, we had about 60 kids there. No wonder I didn't get any cake.

Speaking of cake, JOEY loved his piece! Maybe a little sticky at first, but once that taste of chocolate passed his lips, there was no turning back. Actually, I'm not sure in the end just how much of the cake did, indeed, pass his lips. I do believe the majority stuck to his cheeks; they are quite sizable obstacles, you see.

Joey is quite the spotlight-hog; he just adored all the attention from everyone! Watching the kids run around, flirting with anyone who picked him up, and eating everything offered made him a happy little birthday boy.

It was such a joy for us to be able to celebrate with so many wonderful people who have showered bushels of love and prayers on us in the past year, especially in that first 6 months.

As for Joey, with all that happy socializing, I do believe we wore him out!

Turning a Corner?

Well it seems that Joey has not given up all of his antics - he still likes to keep up guessing, even when it comes to silly little matters!


I wrote about his stubborn refusal to eat, and lo-and-behold he decides to learn to chew! Thanks to those little "puff" snacks for babies, Joey learned how to have something in his mouth without gagging. Thanks to getting the chewing motion down, he is now enjoying eating foods with a little more proficiency. He is still mastering the baby-mush, but I'm thrilled that he's made some progress at all. Oh, and he loves our homemade applesauce, of course. :) We say "bite" and his little baby-bird mouth opens right up!

This, of course, is not applesauce.

His gross motor skills are lagging a little bit, and for a while I was really enjoying the Baby who was content to sit still and play! After a while, though, we started talking about whether or not we should have him reevaluated for therapy. (He qualifies for PT and OT based on his complex diagnosis alone, and we are free to pursue it any time until he turns 3.) All of a sudden a little switch turned and he is slowly opening his eyes to the possibility of motion. He turns himself on his belly all around, especially in the pursuit of someone or something. He is trying really hard to pull himself up, and gets really quite excited when we offer him a little help to do so. Just today he stood holding on to my knees without any other support!

His best source of motion is on his bottom - his wiggle/scooting abilities are growing rapidly. I will find him several feet away and facing a different direction than when I walked away just a few minutes before. The interest is there, the motivation is growing, now we're just waiting for the coordination to come through.
He loves clapping his hands, and plays patty-cake when Bella starts singing it to him. He laughs and smiles and blows raspberries, and you have never heard or seen anything more beautiful.

More Eating Challenges?

Take a look at that chub. Clearly this boy does not have nutrition issues.

Yet he has decided to give us some trouble with his eating habits. Don't get me wrong, he loves, loves to eat. Obviously. But really what he loves is his bottle. Solids? No thanks. Actually, NO WAY!

At eight months he should be eating baby food. Shoot, at 8 months his older sister was proficient at eating meat. But he does not want to chew anything. He does not want carrots, sweet potatoes, peas, pears, applesauce. What baby do you know wants to spit out perfectly good sweet bread?

He's growing the proper hardware just fine. Take a look at that Baby Shark! He has 4!!!

Now if only he would decide to use them.

Beautiful, Burping Boy

(classy title, doncha think?)

So, after Joey's sleep study the pulmonologist/ sleep specialist thinks it might be /could be / maybe hopefully reflux. Yup, maybe we've been hanging out on a cardiac unit after my baby was saved on Thursday worrying about arrhythmias because he has acid reflux. I love it. That would be an easy fix!

Another avenue they're looking into is from a neurological aspect - is he having subtle brain disturbances, like seizures. Right now as I type Joey is sleeping happily with 26 electrodes glued to his head. There's a net-stocking covering the wires so he doesn't pull at them, so he looks like those long stocking-cap skiing hats. Or maybe an elf. He's awfully cute, either way.

Still, they're not sure yet. There are so many possibilities that we're just hoping for a clear answer to go home. Today is 1 whole week that we've been here!

Pat's Thought: "Only my son would require $30k worth of diagnoses to come up with reflux..."

First Week Goals

We are all so happy to have our little Joey home! God's timing is beautiful, as Gram (Patrick's mom) was still in town to enjoy him at home and more time with the girls.

He had 2 obstacles to conquer, and I'm happy to report on both. On the nutritional front, he needed to keep eating! It's important for all little babies to stay well nourished and hydrated, but this is especially crucial after surgery! After surgery the body requires extra calories for repair and healing. Plus, the more weight he gains the stronger and healthier he is before his next surgery in a few months. The result: 2 full ounces gained in just 2 days! This is great!

The next challenge we face is his lack of voice. As I mentioned here he has no voice. How exactly does one manage caring for a baby that no one can hear? We've had several very creative suggestions, for which I am very thankful. In the high-tech department, we have a video monitoring system, which brings me great peace-of-mind. I can actually take a peek at his little chest rising and falling with each breath any time I want. My favorite solution for sleeping, though, was to tie bells around his ankles. He kicks when he starts to cry, so this means that I have a nice, simple, low-tech solution that allows me to sleep in peace.

The first night home we took shifts of being awake with him, but this could not last. The following night we took turns half-sleeping next to him. Finally, we felt confident enough that Kate slept on a mattress on the floor with him on the floor beside, bells around his ankles. This worked really well, and we're all starting to get some rest!

Obsession with Numbers

Counting, counting, counting. Each and every ounce in weight and cc in food intake. For someone who really likes estimates and guesses, this has been a real change of mindset for me!

Yesterday Joey had a swallow study done to make sure his airway was safe while he eats. When vocal folds are weak they can sometimes fail to make that nice clean seal between the esophagus and trachea. The major risk, of course, is that liquid can slip down into the airway. Of course this is no good. Of course this is what we found out has been happening. It was clear from the images during the swallow study that his swallow mechanism works beautifully, which is great news. He can still eat. The bad news is he will have to stick to the bottle.

The Menu: Breastmilk fortified with a teaspoon of formula for the extra Calories, and thickened to a "nectar" consistency.

This was pretty emotional for Mama, who had successfully nursed him just before the test and was looking forward to reintroducing that into our schedule. Really, the laziness aspect of breastfeeding holds a strong appeal. However, this quickly paled in comparison to the excitement that he suddenly started EATING MORE! He is now at his goal for oral feeding!

Last night he had lost a little weight after a day of not eating. (The testing schedule had thrown off his regular eating for the afternoon.) Today he has maintained his weight, but not gained any. For normal babies this is a normal pattern, but for a tiny little post-surgical patient it is a little more crucial. He is eating enough to go home, but he MUST be steadily gaining weight.

Please PLEASE pray that he is ready to come home tomorrow!!! St. Joseph, pray for him!!!

Still has the feeding tube...

No plan to take it out today.  They want him to eat quicker and more quantity first. :(  C'mon little man...clean your plate!  This holding pattern that we're in is very difficult!

He's eating more...

Sorry for the lack of updates, but Joey is less sensational now-a-days.  He's still healing like a champ, and his final inpatient hurdle is to master the art of eating.  He still has an NG tube through his nose to his stomach (the orange one in the picture), and for Sunday and Monday, he began every other feeding with a bottle of fortified milk (to give the breastmilk more calories) followed up by the rest through the NG tube.  This way, he gets the full amount every time, but he's encouraged to eat himself and expand his tummy.  Today, the big breakthrough is that he starts every feeding with a bottle.  Yeah, I know, not horribly exciting, but it is a step closer.  It's hard to imagine that three weeks ago today, he had his first surgery and then decompensated almost to the point of death...  A few more bottle feedings is hardly blog-worthy, but at the same time, I'm happy that it's not more "intereresting". :)

If all goes well today, and I think it did, then tomorrow they'll take out the NG tube, and assuming all goes well again, he'll be discharged Thursday or Friday.  It's amazing that we have a timeline.  They've been prepping us with discharge instructions and all that... wow.

Thanks again for your thoughts and prayers!

EAT, Joey, Eat!

Eating is a major concern after surgery for almost everyone but especially for the little babies! The major goal for right now is EAT, Joey, Eat! Let's fatten you up and get you home!

There are special concerns after ECMO, since the cannulas sit against the mucles for the tongue and jaw, leaving possible problems with the "suck/swallow" reflex. Yesterday we got to try a bottle for the first time, and he did GREAT! NO problems whatsoever with the bottle (of breastmilk) and he seemed to really enjoy it, actually. The problem arose when it was all gone. Poor Little Guy, I hate that part, too. They are alternating bottle and bolus through the naso-gastric (NG) tube. All sustinance right now is fortified breastmilk for extra calories and protein.

Unfortunately, while he loved the eating part, his stomach did not like the being full part, and he has vomited almost everything that goes in. They are slowing down his bolus feeds, and we took last night off from bottle trials just to make things gentle and easy on him. As one of our favorite CICU docs said, "He's a little sensitive." When he can keep the food down we'll try feeding with the bottle again, and gradually increase that as tolerated.

The goal for going home (YES! I JUST USED THE PHRASE "GOING HOME!") is for Joey to tolerate full quantity from a bottle and breast. I will still most likely end up alternating fortified breastmilk and nursing for a little while.

Please pray his stomach settles down and he can EAT well! It's amazing to me that it's the biggest obstacle to bringing my baby home! All that he's been through, and I'm starting to finally imagine having him HOME again!

He got a suite...

More positive news today! He was moved farther from the nurses station to a room technically on the same CICU unit, but housing spill-over patients in the next ward. Basically, in this sort of intensive care, the most serious cases are right next to the nurses station for extra monitoring, so the farther you get from it, the better off you are! The new room doesn't have as many connections different life-support devices, nor is it up to the level of sterility for impromptu surgeries (like putting the ECMO in or taking it out.) So by moving him, they're saying that they don't foresee needing to use those additional devices! I know it might seem like we're grasping at straws here, but every little milestone seems humongous!

One other perk of the new room is that it has somewhat more lax rules. It has a table in it that we had lunch on today (the unit technically doesn't allow food in the patient rooms, but the unit where the spill-over is does...we went with the lax rules. :)) It also has a full-size couch, which is marginally more comfortable than the floor, but should Kate decide to stay to help nurse the little guy, she'll actually be able to sleep in something more than a recliner. Also, being off the main corridor makes the room a bit quieter, and fewer people poke their heads in...all good signs!

Speaking of feeding the little guy, he ate 10 ml of breastmilk from a bottle today! This was great news! Newborns typically have a hard time learning how to eat after being fed through the IV or feeding tube for the majority of their lives. Also, being on ECMO stresses certain neck muscles (look where those canules are inserted, and you'll see how it messes with his neck/throat) so that makes it harder to remember how to suck. On the flip side, he had a week of nursing, so simply remembering how is easier than learning for the first time like those babies whisked directly from the delivery room the the ICU. So the fact that he ate from a bottle was awesome! A baby his size on full feeds gets about 18 ml/hour, so a baby that nurses every 4 hours would get roughly 72 ml per feeding. So it was a small portion: only 1/7 of the amount he needs before he can feed completely without the feeding tube, but it's a start. They'll work on stopping the feeds before he eats to help him get hungry and then offer more and more each time.

We're doing well...let's hope that it continues to improve!