Tuesday, July 20, 2010

A Cry Heard 'Round the World

JOSEPH CRIES!!! The irony of this excitement is not lost on me, just so you know.

His voice has been slowly coming back in little cooing bits. At first I thought it might be wishful thinking; after all, the ENT warned me it could take months. But several days later and everyone is starting to look his way as he makes himself known! He still goes silent when he tries to scream, but I think I'm more than content with that development. :)

As a friend said, Who would have thought we'd be praying for a baby to cry!?!?!

Friday, July 16, 2010

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!

Monday, July 12, 2010

The Homecoming of the Century

It feels like an eternity since we first brought our Little Man home from the hospital the first time, and here we are celebrating again!

The attending (i.e., "head doctor in charge") came in and told Patrick "He looks good. Looks like you're going home today. Congratulations." And Patrick called Kate and said "You should get the girls ready and leave now!" And Kate whispered to Bella "We get to get in the car... and drive to the hospital... and bring Daddy and Baby Joey HOME!!!!"
And Bella threw her arms around Mama, then jumped down and ran around in circles laughing and singing "Joey's coming HOME!!!"
And you never saw a happier parade than the one escorting our Precious Miracle out those hospital doors.

Sunday, July 11, 2010

He's Home!!

We brought Joey home today!!!! Pictures to follow tomorrow. :)

Saturday, July 10, 2010

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!!!

Thursday, July 8, 2010

The Silent One

A full 10 days that he's been free from the breathing tube, and Joseph still has no voice. Well, not much of one anyways. His coo is like a soft gentle breeze whispering through a summer night, but his cry is, well, silent. His entire body will be screaming with a scrunched-up red face and back-arching and head-shaking, but his vocal chords haven't gotten the memo.

Today he saw an ENT (or should I say the ENT saw him? ) who gave us a good reason. The concerns were permanent damage to the vocal folds after being intubated, and also a potential lack of seal from the airway. The good news is that there is no immediate problem that could be compromising his eating or airway. The bad news is that his right vocal fold is loose, which means exactly what we're seeing - he's not making a lot of noise.

We will follow-up with the ENT over the next few months as an outpatient to monitor progress. He sees no reason why Joey won't be yelling with the rest and best of them, but it may take a few months. If there is still a problem in a year then we may have to intervene. Meanwhile, anyone have good suggestions for watching and protecting a baby who can't cry?

In the eating realm, Joey is still slow and steady. We decided that his jersey number is 22, since that's about what he eats (in mililiters/cc's) each time. Just this evening he managed a whole 25! Regardless, he is gaining weight beautifully. They will remove his NG tube tomorrow morning and see how he does!!! Please pray that he eats well and can leave it out!

Wednesday, July 7, 2010

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!

Tuesday, July 6, 2010

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!

Saturday, July 3, 2010

Family Reunion

Joey continues to improve day by day. The nurses are starting to talk to us about care "when he goes home", so we're getting more and more excited! He's eating more and more at a time, and doing well with it. Bella's birthday is Monday, and it would be a wonderful present for her to go get her brother from the hospital!

Speaking of Bella and Anastasia, they visited Joey at the hospital last night. Both of them had really missed him over the last three weeks (which seems so long and so short at the same time.) Since Joey's on the step-down floor, he only has a feeding tube through his nose, an IV lead that's not connected in his wrist, and some EKG leads. We thought that it was a good time to bring them. They both loved seeing their brother!

Bella got to hold him as soon as we got there.

Anastasia was not one to miss out on the action!

They helped our nursing student change his EKG leads.

They both got an old lead/sticker

And to plug them into the machine.

Bella loves baseball (we're a Nationals family…so it's more about the playing than the winning. :) ) She picked his outfit and helped to dress him.

Thanks for all the prayers; keep them coming!

Friday, July 2, 2010

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!