"I love you and want for you all things that make you happiest; and I guess you, not I, are the one who knows best what those things are."

Saturday, October 26, 2013

We Know It Is Coming

I'd be lying if I said I wasn't nervous about Monday's cardiology appointment. We're hopeful that Charlie's aortic narrowing has slowed, but realistically that is unlikely. We're in a race with the clock right now. The longer we can hold off doing a cath to repair Charlie's coarctation the less likely we'll have to do a second cath to prep for his next surgery, the Glenn.

Charlie seems to be doing well, but there is no denying that his saturations are starting to drop a little. While this is expected t's just a question of whether the coarctation is the cause or if it's time for his Glenn. Luckily his body seems to be keeping up with everything at this point and we haven't had to bust out the oxygen very often.

I fully understand that Charlie will have a cardiac cath in the upcoming months, another one before his third surgery, and probably more in the years following - but from a mom's standpoint - each one that we don't have to do is fine with me. Not that we'd ever put Charlie at risk to avoid the procedure...

Bottom line is that we know the next steps are approaching. In the near future we will be scheduling procedures and surgeries. It is so hard to look at our precious boy and know what lies ahead for him. He seems so healthy and happy on the outside, yet we know that his body is struggling so much on the inside...

Friday, October 25, 2013

Germs, Germs, Go Away

So cold #2 is creeping into our house. Everyone seems to have either a runny nose or sore throat (or both). Charlie is just starting to get a runny nose so tonight we gave him a nice warm shower and rubbed some essential oils on his chest. The humidifier is currently running in the bedroom to get the air moist before we tuck him into bed. We'd really like to cut this off at the pass if possible.

We continue the transition from bottle to breastfeeding. However, Charlie's weight gain has slowed significantly in the past week as we've limited his bottles. *sigh* We will keep on tweaking the process as we go, trying to find the right balance of nursing/bottle feeding for our little man.

This week we did catch a crucial issue with our insurance. Our pediatrician submitted paperwork for Charlie to get his RSV shots this winter over a month ago. In fact, the doctor has a letter from our insurance confirming receipt of the request and stating that it was under review. However, shots should start next week and we haven't heard back. When I called Charlie's case manager we realized that the paperwork has gotten lost in the shuffle somewhere. So on Thursday this week our pediatrician resubmitted all the paperwork directly to our case manager. The case manager said she was going to try to expedite the approval so that we don't put Charlie at risk while navigating red tape...

Again - it's all a delicate balance. Trying to avoid germs is next to impossible this time of year - yet, it's vital for Charlie. We need him to continue to gain weight, but would prefer for him to do so without the need of the extra calories in the fortified milk. We need to get shots for him, but need insurance approval first.

Let's hope this all sorts itself out in the next week or so!

PS - our friends delivered a BEAUTIFUL baby girl, Caroline, on Wednesday! Caroline had a cardiac cath with a balloon angioplasty less than 18 hours after her arrival but is doing wonderful and it looks like she has avoided open heart surgery for the moment. God is good! Thanks for the prayers!

Tuesday, October 22, 2013

Another Warrior On The Way

I'm calling on my prayer warriors today...some of our college friends are being induced today and are delivering a heart baby! Their precious Caroline was blessed to have a successful fetal cardiac intervention aimed at preventing her from needing the three surgeries Charlie is undergoing. Now they have to wait and see how Caroline's heart responds to life on the outside. It's a time of great uncertainty and anxiety for everyone involved.

Please pray that the delivery goes smoothly and Caroline's heart responds favorably after birth. Also, pray that God guides the hearts and minds of the medical team as they care for Caroline and her mom, Ellen.

Good luck Ellen and Ryan!
We're praying for all three of you!
Heart hugs!

Monday, October 21, 2013

Growing and Grooving

13 lbs! That's how much Charlie weighed at his most recent nursing appointment! Most heart babies don't see 13 lbs until well after their 2nd surgery, so Charlie continues to defy all the odds.

Our little (big?) man is also meeting some "normal" baby milestones. We now have social smiles, cooing, and more awake time in this house. I'm loving it!

There are times it's hard to believe that Charlie has been home for 7 weeks! We've been blessed with few complications along this road. Aside from a scar running down his chest and some slightly bluish lips you'd never know that Charlie has already been through more than most of us will see in our lifetime.

We have a pretty good morning and evening routine going now. In fact, this weekend was the first time we've missed a dose of his medicine. It sent mom and dad into a bit of a panic (one med regulates the electrical signals in Charlie's heart), but a quick call to the cardiologist put us at ease and we adjusted doses according to recommendations.

Charlie is growing and thriving! Next week were back at the cardiologist for another echo and consult. Pray that things continue to go smoothly!

Tuesday, October 15, 2013

Spreading Out Our Appointments

Charlie's cold is subsiding. He still has a little cough, but the runny nose is a thing of the past. Plus, he's finally able to eat without gagging on snot and struggling to breathe.

The cold has put a damper on his nursing, but we're going to give it a try again this week. Since he's feeling better he's been putting on weight again so we have the all clear from the doctor to give it a try.

Today Charlie had a pediatrician appointment. He was 24 in tall (90%) and weighed 12 lbs 12 oz (70%). The pediatrician would like his weight closer to the 85% but was happy that Charlie is starting to catch his weight up to his height. We're headed in the right direction!

Charlie got 4 shots today at his appointment. Boo! While he did let out a good scream during the shots - he quickly settled down with a smug look of displeasure mixed with bring it on. The biggest issue of the day was getting the bleeding from all the shots to stop! With all the aspirin in Charlie's system he tends to bleed more than other babies during shots.

Overall a good report! We see the nurse on Friday, the cardiologist in two weeks and the pediatrician in...wait for it...wait for it...2 months!!!!

Appointments are spreading out a little - that's a great sign!

Saturday, October 12, 2013

Cautiously Watch and Wait

The last few days have been a bit of a struggle. Charlie seems to have caught his first cold. He's got a runny nose and a nasty cough. He's been pretty miserable.

Thursday we called the pediatrician's office to see if there was anything additional we needed to do. Unfortunately, Charlie's doctor was off for the day so we spoke with the triage nurse. Frankly, she pretty much freaked out when I  told her his O2 sats were in the low 70's despite my explanation that this was not entirely unusual for Charlie given his circumstances. I think she was ready to send an ambulance to our doorstep.

I ended up calling the cardiologist for advice. Ultimately we decided to cautiously watch and wait. (This phrase seems to haunt me!) If we would have taken him to the ER they would have admitted him immediately, but they would do the same thing we were doing. Checking his sats, encouraging him to cough, watching for dehydration, and let him rest. And as everyone knows - a hospital is NOT a good place to rest!

The nurse came out yesterday and did a very diligent evaluation of Charlie. He only gained 2 oz over three days which is not very much for our champion eater. So it's clear that his body is burning extra calories with labored breathing and lots of coughing. Plus he's not eating quite as well since he's so congested. She said his lungs continue to sound clear so his coughing is working and he's keeping up with the drainage for now. If the coughing doesn't keep up and the fluid drains into Charlie's chest we'll have a one-way ticket to the hospital.

There has been a tense feeling around the house the last few days. While we certainly didn't think we would avoid all of cold and flu season, it's come a little early for our liking. We are constantly discussing his color, saturations, eating, coughing, breathing, etc. Mom and Dad are on pins and needles...

Oh yeah, then yesterday our big boys came home with a letter saying they may have been exposed to chicken pox at preschool. Because that's what you like to hear when you regularly take your immune-suppressed baby who hasn't been vaccinated yet into the preschool classrooms. Our pediatrician thinks he'll be fine with mommy's immunity from the womb, but it is another thing to watch cautiously.

Please pray that our little man keeps having a forceful enough cough to clear the mucous out and that he doesn't somehow end up with chicken pox. And prayers for mom and dad's peace of mind would be appreciated too...See More

Wednesday, October 9, 2013

Early Intervention

Yesterday Charlie spent the afternoon with a team of therapists. Since he has such a complex heart condition he automatically qualifies for certain therapies through the State of Illinois' Early Intervention program. The group assessed Charlie for about 30 min and we talked extensively about his status, past and present.

Charlie will have occupational therapy twice a month. The OT will work on feeding and some fine motor skills. She'll also help with sensory integration skills and coping mechanisms for unpleasant times.

He'll also have physical therapy once a month. The PT is primarily looking to increase Charlie's strength and endurance. She will also assist with some positioning activities since Charlie favors lying on his left side and we don't want to develop a flat spot or muscle weakness from not using both sides equally.

We're taking every little bit of help we can get for Charlie. He's a fighter, but we know there are still hurdles to overcome. An extra coach here or there along the way can't hurt...See More

Monday, October 7, 2013

The Good and The Bad

We have good news and bad news after another afternoon spent at Cardinal Glennon's Dallas Heart Center with Charlie. He had an echocardiogram of his heart and met with his cardiologist, Dr. Peterson.

On a high note, the valves in Charlie's heart are not showing as much leakage as they were 3 weeks ago. It is most likely a combination of the new meds he is on, Charlie getting a little bigger, and being further out post-op. Less leakage means that there is less pressure built up in inappropriate locations in his heart, so this is a positive all around!

Equally as exciting was Charlie's growth. He has rebounded back up to the 62% in weight (he had dropped to the 55%) by putting n over 2 lbs in the last 3 weeks. He's 12 lbs 4 oz now. His surgeon's preference is to do the Glenn on babies over 12 lbs - so we can check that goal off the to-do list! Now we won't risk having to "wait" on the surgery until Charlie is "big enough" (we wouldn't really wait - but they would proceed much more cautiously if he wasn't such a stocky boy). And with the improved weight gain came the OK to nurse up to 4 times a day! That's half of Charlie's feedings!!!

However, we did encounter some issues with Charlie's heart. His aorta continues to narrow. The cardiologist and echo tech were able to get some great pictures today (thank you Charlie for being still and pleasant during your tests!) which allowed Dr. Peterson to get a good look at the aorta. The narrowing is located at the end of the Charlie's surgical site. It is most likely a combination of scar tissue and build up from where the stitches have been. Right now his pulses remain pretty strong which is a good sign. His single ventricle isn't showing signs of distress from pumping against a small blockage. However, the nature of the beast is that it's slowly restricting the flow of blood out to the body.

Dr. Peterson and I spoke at great length about Charlie's cyanotic (blue) episode on Saturday. We went over saturations, activities, breathing patterns, course of action, results, and more. It's very likely that Charlie is simply struggling just a little to pass blood through that narrow aorta. Over the course of time - it caught up with him causing him to turn a little dusky and struggle breathing. We certainly don't want this to continue as a trend. We're under strict instructions to call the office any time we administer oxygen and to carefully monitor his blood sats over the next few weeks. She also reminded us that we may be practically quarantined during these germy months in an attempt to keep Charlie as sheltered as possible. Colds and congestion are not going to be our friends....

The answer to the narrowing aorta is to either balloon it open or place a stent in it. Both of these can be accomplished through a cardiac cath and the course of action would be determined once the cardiologist could see everything "live" during the procedure. Dr. Peterson would still like to make it to that 4-6 month window before we have to do the cath. But we also don't want to get tripped up on time frames when something needs to be done.

The battle plan for right now is to cautiously watch and wait. We return in 3 weeks for another echo and consult.

Dallas Heart Center Happy Echo

Sunday, October 6, 2013

Hmmm…

Last night Charlie slept for a 7 hour stretch! Normally we would rejoice, but that's VERY out of character for him. He normally only sleeps a 3-4 hour stretch so we're pretty sure he wasn't feeling well. We opted to let him sleep so as to give his body time to heal on it's own from whatever was bothering him.

Today was better than last night night, but Charlie still isn't himself. He has been fussy most of the day again and has pretty much insisted on being held. The good news is that his saturations have remained pretty consistent. We haven't had to use oxygen, but we've been watching him closely.

We're grateful that Charlie has a cardiology appointment tomorrow. It will give us a chance to let them know we've had to administer oxygen. Plus the doctor will listen to his chest and read Charlie's echo to make sure there isn't anything going on that we can't see...

Prayers for a good appointment tomorrow!

Saturday, October 5, 2013

Busy Busy

What a day!

Charlie's oldest brother turned 5 today. We celebrated by eating John's favorite meal over at grandma and grandpa's house: shrimp, pork steaks, roasted broccoli, sweet carrots and chocolate cake. This is a 5 year old food snob!

Our MOMS Club sponsored a bake sale benefitting Charlie today too! Charlie spent a few hours there smiling (ok - sleeping) at the patrons. We had a chance to meet and visit with a heart transplant recipient who happened by the table. It was wonderful to talk with him and hear his story. It was an awesome happenstance. We honestly can't believe how blessed we've been in this journey. Our friends, family and more than a few strangers have more than stepped up to the plate! I was in tears as I left today.

Tonight was a little rough for Charlie. He's been a tad bit "dusky" and pale the last two days. This evening he was inconsolable and irritable. His eating has been erratic (at best) today. He just didn't seem himself.

When we checked his saturations he was only in the high 60's and his heart rate was higher than it has been in three weeks. Since he had been fussy most the evening this wasn't a huge surprise (he typically desaturates when he's crying). After trying a few things to get his sats up on their own (a.k.a. resolve the fussiness: pain meds, gas meds, bottle, burping) - We resorted to administering oxygen. His pink color came back quickly and his saturations s-l-o-w-l-y came back up to the low 80's. It took nearly an hour and half to get his heart rate back down to a "almost normal" pace.

Charlie is sleeping peacefully in his bassinet now. We'll continue to monitor him throughout the night as he wakes up to eat and tomorrow throughout the day.

Monday is our next cardiology appointment and another echo. We're hoping that the valves in Charlie's heart have slowed (maybe stopped) their leaking and that his aorta shows no further signs or narrowing. If those things happen we should get a full month before we have to return to the cardiologist! And it means we most likely won't have to schedule Charlie's cardiac cath until December or even January.

Prayers that tonight was just a fluke occurrence and Monday yields good results are appreciated!

Thursday, October 3, 2013

My Charlie

No real medical updates to share (although Charlie is a 1/2 oz from breaking that 12 lb mark) so I thought I'd share less important but more fun stuff....

Things Charlie dislikes:
1. Hiccups. Apparently having your chest lurch uncontrollably after it has been wired shut is unpleasant.
2. The 5 min or so it takes to warm a bottle. Once he sees it...it better be ready for consumption.
3. The smell of hand sanitizer. I'm guessing he's been conditioned to think something unpleasant is about to happen when someone uses it in his proximity.
4. Motionless vehicles. If he's going to be strapped in a car seat - it had better be moving. Red lights are unacceptable in Charlie's world.
5. Mommy pumping. Just assume if the pump is running, Charlie is fussing.
6. Being without his monkey (which is attached to his paci). It should be in his fist at all times regardless of being awake or asleep...proof is in the picture...

Paci Pic