Another Milestone!

August 29, 2010

For the past week, I have been trying to get Jack back on a regular eating and feeding schedule.  Well, actually, it would be more correct to say that I have been trying to get him on any schedule, at all, not back.  I did lots of research on how to set up and keep a schedule with a baby, from books, to magazines, to websites, to my never-fails-baby-guru, Aunt Katie.  I finally decided that a baby-led schedule was what we had been doing, and it was most definitely not working for me.  I also decided that a completely mommy-led schedule wouldn't work, because Jack is fairly unreasonable at times.  So we went with an amalgum of the two, and worked together on it.  Basically, there are things I want to accomplish during the day, and I look for Jack's cues as to when to do them.  For example, he has to eat, sleep, play, and have an outing.  I worried that it would take forever to get him on a schedule that would work with my own eat, sleep, play desires, but to my astonishment, within two days, Jack was fully on board, and last night..........

JACK SLEPT THROUGH THE NIGHT!!!  And I don't mean the 5-hour block that all the books say will be how a baby "sleeps through the night."  I mean a full 7 and a half hour sleep through the night!  I was completely amazed!  And if I had been able to leave him alone for the whole night, I would have been well rested, too.  But of course I had to get up to check on him three times to make sure he was breathing.    At one point, I watched him stretch out his little arms and legs, past where they would have previously encountered the ever-shrinking bassinet he had been sleeping in, and I swear his face seemed to say, "whoa!  My new digs are huge!"

To make it even better, Jack slept in his nursery, and I slept in my own bed.  For the first time ever!  We were upstairs, and I had taken a cooler with bottles up there in case he woke up, but we didn't even need them!  I just can't believe how well it all went!  When I woke up, the sun was up, and my phone was alarming with a text, and that's the only reason I woke up.  It was glorious!

So now that Jack has shown that he is capable of sleeping through the night, I fully expect him to do so every night for the rest of his life.  That's how babies operate, right?  I'm home free, yes?  We'll see how that goes, right?

Tomorrow morning (Monday), Jack has an appointment with his cardiologist.  This visit will mark six weeks since the last heart cath.  Hopefully, the EKG, oxygen saturations, vitals, and his heart sounds will be great.  We continue to pray that his heart is "relaxing" and that the pulmonary valve is opening well, and that everything, in general, is doing what it's supposed to be doing.  Basically, that "his ticker's ticking like they say it should."

Also, on Tuesday, Jack will be 20 weeks old!   He continues to thrive, and amaze me with is strength and reslience.  I don't know that I've ever been sure of where I'm supposed to be in life, or what I'm supposed to be doing, but at least now, I know with whom I'm supposed to be living.  This is the best life, for sure.

Love
Maggie

Gerber Baby? Nope!! Way Cuter!!

 August 22, 2010

We finally got Jack's 3-month portraits back, and they are fantastic!!  I have posted a few below, so let me know what you think!!

We have had quite a week since the last post.  For starters, JACK ROLLED OVER!!  He did it three times, but only because I kept rolling him back over to his tummy so I could video tape it.  By the third time, he was getting fairly upset with me, so I had to stop, but it was so exciting!  It's amazing that of all the things I've accomplished in my life, I found such heart-filling joy from watching Jack "just" roll over.  I anticipate many more milestones in his life, that will no-doubt be the best things I've ever experienced!

I think that I actually posted the video to Youtube, but it's my first, so I'm not sure.  Check out the link below, and hopefully see Jack rolling over!!

http://www.youtube.com/watch?v=pxRdG8AubnA

Jack is actually a little bit ahead of the "delayed development" that was expected due to his prematurity and cardiac condition.  So, he's still behind a four month old full term baby, but ahead of where they thought he'd be.  The cardiologist and pediatrician both suggested that because I am at home with him, and work with him all day, that he may be able to surpass some of the limitations that he has.  He is unable to go to daycare due ot his heart condition.  The risk of complications from something as simple as a cold would put him in the hospital.  The cardiologist even commented that Jack has a "beautiful head," and that many of the babies she sees have a flat spot from being laid down so much.  She said she could tell that I don't just lay him down all day.  I appreciated her noticing, since I do work hard to avoid that.  But in all honesty, this kid is starting life out with such a heavy load of disadvantages, the least I can do is a little daily massage, physical therapy, reading and heavy duty loving on him!

As some of you may know, my stepmother passed away on Friday.  Jack and I visited her on Tuesday, and even in hospice, in what was surely a difficult maneuver, she insisted on standing up to kiss Jack.  She watched me feed him, and him fussing, and she said he was a strong boy.  She was very loving to family, especially my Daddy, and Jack and I will miss her.

Love
Maggie and Jack

1st Post-Cath Follow-Up!

August 16, 2010

Today was Jack's three week follow up from the heart cath balloon procedure, and it went GREAT!!

He weighs 14 pounds!!!!  He had lost some weight after the cath, so he's back on track, packing on the lbs!
He is 24 inches long!!!  He's growing like a weed!

AND, his heart was doing so well that the doctor didn't think they needed to do an echo!!!  His oxygen saturations were at 94%!!!!!!  That is an amazing improvement of around 9 percentage points since the cath.  He had been around 85% saturation before the procedure, and a "normal" heart like mine, or yours works at 100% saturation.  Jack is closing in on his "big boy" heart!!!!!

He was also quite the flirt this morning, as his horoscope had predicted!!  Check him out below, flirting with the nurse who was doing his EKG.  He was charming the pants off the nurses, the doctors, and even the receptionist!!!  He's really feeling better, and it shows!

We are maintainig the same meds, feeding and activity protocol for a bit longer, and he'll go back in two weeks to check on things.  Here's hoping for continued heart improvement!!

ALSO - He turned over this morning!  He was on the couch, so I think the cushions may have been a factor, and I haven't been able to recreate the feat, yet, so we'll call it a "maybe milestone."  I'll keep trying and let you know when the experiment has been repeated!!

CHECK OUT THOSE FAT LEGS!!!!!!

Who's Your Mama?

People often ask me who Jack looks like, and for a while, I really couldn't say. But then, my Daddy brought me a baby picture of myself, and I think Jack and I really look a lot alike! Judge for yourself!!

I was about a month old in this photo, and obviously a little ahead of Jack physically, but my Mama swears I was holding my head up when I left the hospital!!

Congestive Heart Failure

I am beginning to figure out that many of the terms used in the medical field are less scary than they sound. And that's a good thing, because when the doctors say "congestive heart failure" in reference to my son, my stomach tightens and my own heart skips a beat.

A week after Jack's heart cath, he was again breathing fast, and was very agitated. Having seen this before, I figured that his lasix were under-dosed. The dose hadn't been increased since they were initially prescribed, and since then, he'd gained about 5 pounds. He also now had two paths for blood from the heart to the lungs: the B-T shunt, inserted during the open heart surgery, and the newly opened pulmonary valve. This was essentially "flooding" the lungs with blood. On a positive note, it could be said that his heart was working too well. So I called the cardiac call line and described his symptoms, and requested a clinic visit that day, which I received.

Unfortunately, Jack's regular cardiologist wasn't in that day, so I had to go over his history with a new physician, but that ended up being a good thing. She was very impressed with my thoroughness and was persuaded that my diagnosis was correct. I love these little pats on the back. It makes me feel that my Type-A management of Jack's condition and care are appropriate. In the end, the doctor increased Jack's lasix dose by 60% (!) and since then, his breathing has been slow and steady! She also did an echo, which showed that Jack was in distress, but not yet in congestive heart failure.

A week later, we followed up with Jack's regular cardiologist who gave him a good report. The new lasix dose was working, and Jack's heart was continuing to relax, and operate under lower pressures. I also, finally, worked up the nerve to ask the question that had been lurking in my mind, and my heart, since the first "bright spot" showed up at the 20-week ultrasound. I hemmed and hawed, and finally, tearfully asked the doctor if Jack was going to live. Her own eyes welled up a bit, and she said that he was strong, and while she couldn't make any guarantees, that I should begin planning for potty training, and the first day of kindergarten, and teaching him how to drive, and taking him to his first semester of college. I was so relieved, and while I know there are no guarantees in life, Lord, how I now know this, I feel so much better that she confirmed my beliefs that Jack is on the road to health.

So, as I have come to expect, Jack will have lots of improvements and setbacks on this long and winding road to health. But so far, the steps forward have been great, and have far out numbered the steps back. And that has been an answer to many, many prayers.

Four Generations: Jack, Me, Jack's Grandaddy Fred (John, Jack was named after him) and Great Grandmother (Maudie, Maiden name Martin, Jack's middle name)

Jack's Heart Cath - "2nd Repair Procedure"

On July 19, 2010, Jack had his second repair. This procedure was a heart catheterization where his pulmonary valve was opened further with a balloon that was fed into his heart, and then inflated. The procedure lasted an amazingly short 90 minutes, and Jack did very well! He tolerated the anesthesia well, and the valveoplasty went according to plan. This means that there were no complications and the valve was opened enough, but not too much. One thing that I was worried about was a perforation, which is rare, but is a very real concern in any heart procedure.

The echo immediately following the procedure showed that the pressures in the heart were much improved. The pressure in the right ventricle (which has been pushing blood against the closed pulmonary valve since 8 weeks after conception) was down to about 20 mmHg, from over 120 mmHg. The ideal pressure is around 15. The echo the next day the pressure was back up to 45, but the difference the day before was probably due to the fact that he was sedated, and the overall trend is down. This measure of heart function should continue to improve over the next months to years.

Jack spent two nights in the hospital recovering from the procedure, and aside from some grumpiness and loss of appetite from the anesthesia, did fine. He didn't sleep much while we were there, but within a week of being home, was eating and sleeping much better.

Since the procedure, Jack has been eating better, sleeping better, and exercising and playing more frequently. People who saw him before the procedure, and then a few weeks afterward were amazed at the difference in his appearance and energy levels! The heart is so amazingly important to every aspect of the body and mind, and now that Jack's is working on all cylinders, he is soaring in terms of development and appearance!

Jack will continue to visit his cardiologist monthly for a while to ensure that the heart is recovering, and "remodeling" it's functions appropriately. If there are any issues, he may have to undergo another procedure, but if not, the doctors believe that he will be able to go without further procedures for years, or even decades!!

Enjoy the pictures of his visit below...


Below: Jack receiving his pre-procedure assessment. Yes, that is a teeny-tiny hospital gown! Is that the cutest thing you've ever seen!?! I was going to steal it, but thought better of it!



Below: I was able to hold Jack on the stretcher until he was taken back. He was a little squirmy and seemed to know he was not going to enjoy what was coming his way.



Below: Jack coming out of the anesthesia. He was so loopy!! The necklace above his head was the beginning of his "Beads of Courage" necklace. Watch for a post on that soon...

Happy 4 Month Birthday!!

August 13, 2010

Welcome to Jack's new blog!!! Today is his 4 month birthday, and while he's still, really, brand-new, I'm feeling like we've been pals forever! He is growing by leaps and bounds, and so pink and healthy that you'd never know that he was born with a congenital heart defect. He is developing well, although he's lagging behind a full-term baby, but we're not worried about that!! This morning, his home nurse weighed him, and he is a solid 13 pounds, 11.5 ounces!!! And he's been off the "super high calorie preemie formula" for about two weeks, now! I think he's doing just fine!

This blog is for family, friends, and anyone who is interested in the "continuing saga" that is Baby Jack's life! I know that he is amazing, and since so many of you have said that you enjoy reading about him, I welcome you into his extended family! I am going to post two items about his last two weeks next, and then I will post whenever he has a doctors appointment, or does something amazing. Which may be everyday, knowing him! I hope you'll keep up with his development, and continue to pray for this amazing little boy!!

I am posting a few pictures of his last laughing fit above. This kid thinks I am one hilarious Mommy! And I eat it up, so he gets a show on par with a Vegas extravaganza several times a day. Hey, as long as my reward is these smiles and laughs, I'm the best paid entertainer around!