Wisdom Heart

Hi everyone.
We just got back from trick-or-treating with Sophia. This was her "first" Halloween because she was in the hospital and a few days old for the actual first Halloween.
Anyway, we put her in her wagon and took her first to Brookside, a local neighborhood. Where the shops were all handing out goodies. Later we went to Northeast where the historical society puts on a big shindig at the museum and nearby houses.
I think she had a good time but she tired out pretty quickly. As did we.
With all that has gone on the last few days with the party I am ready for a break. But alas, I have to return to work tomorrow.
-Michael

Sophia had a great birthday party.
We had tons of guests and a really good time.
The theme was hearts for obvious reasons. We had lots of heart-shaped snacks and covered the house with construction paper hearts and balloons.
Thanks to all the friends and family that helped us pull this off. It ended up being a pretty substantial undertaking and we could not have done it without the help of our wonderful family and friends.
Thanks also to all those that attended. Sophia had a great time and will really enjoy all the gifts she received.
It is pretty incredible to reflect on Sophia's first year. I am sure that is true of any baby. But, Sophia has had a whopper of a year. When Sophia was born I could never have imagined she would have had two heart surgeries, a g-tube surgery, and countless doctor and therapy appointments to deal with things as normal as a cold and as complex as not being able to eat orally. I am not sure I had any notion of what it would be like to be a father. But, I remember being pretty terrified of the prospect of caring for a little person whose every need we would be responsible for. I wasn't sure how we would manage on almost every level.
When we found out about Sophia's heart problem I was even more scared. But with each new challenge that has presented itself, we have taken a deep breath and dealt with it as best we were able. And frankly, Sophia has taught us how to accept the challenges she faces by facing them herself with such strength and grace. She is such an amazing girl.
Reflecting on the year, I am no longer scared the way I was in the beginning. I am instead inspired by the difference such a small little girl can make in an incredibly complicated and cold world. The boundless love and strength she exudes inspires me to not just be a good dad, but to do all I can to realize my potential as a human being. She reminds me that the opportunity to reach that potential should not be taken for granted.
A huge thank you to all who have made this first year in Sophia's life possible. I hope she has inspired you the way she has us.
-Michael

Sophia has been having a pretty rough week. Though she has been in a really good mood. She has a pretty bad head cold. The problem is that, because of her trouble swallowing, when the drainage from her nose goes down her throat, she chokes. And when she chokes, she throws up. She has thrown up three times today.
The big news though is, Sophia was born one year ago today. I think for the most part this will pass without too much fanfare, as she is having a great big party on Sunday. I will post pictures and thoughts from that on Monday.
The picture is from earlier today. Sophia fell asleep in her highchair.
More Later-Michael

It was a beautiful Sunday afternoon. So we all packed in the car and drove to the pumpkin patch.
We went on a hayride and conquered the corn maze.
Sophia is doing really well and had a great time.
After three weeks, Sophia is almost completely back to her normal self.
-Michael

Things are getting back to normal around here.
Though normal here, is not really normal.
Sophia seems to have recovered well from her surgery. But, she has been irritable and has thrown up a few times. We don't know if this is because she is getting used to the whole feeding thing post-op or something else. Perhaps, the narcotic taper is making her nauseous.
Her moods seem to fluctuate with how her tummy feels. Which is understandable.
This is not a new issue, as we dealt a lot with feeding issues prior to surgery as well.
Other than this small issue things are getting better everyday.
-Michael

Sophia went to surgery clinic today to have the staples removed from her chest incision. They also removed the stitches from where her Blakes (chest tubes) were. She tolerated it really well. We are going to see her pediatrician this afternoon. As I stated in the previous post, Sophia has been kind of grumpy and whiny. She has also had a good deal of junk in her nose and throat.
We first suspected a cold or infection. But Sophia does not have a fever and the symptoms really seems to come and go.
So here is what I am thinking. Sophia has a significant history of acid reflux and is on a lot of medication for it. Mainly, she was getting significant doses of both zantac and prilosec prior to surgery. When we were in the PICU, one of the intensivists told us that zantac antagonizes the effect of prilosec and took her off of the zantac. Since then, Sophia has developed a cough, stuffy nose, and she cries more.
I cannot find any literature that proves what the doctor in the PICU said and I think she needs to go back on the zantac.
So, we are going to see the pediatrician to make sure she doesn't have a bug. But mostly to confirm our suspicion that she needs to go back on the zantac. It is worth noting that it took several months to get her reflux under control and one doctors decision negated much of the progress we had made.
I will post once my hypothesis is confirmed by her pediatrician. But, I am pretty confident it will be.

Ammendment-
The pedatrician confirmed my suspicions and put her back on zantac. But, he also thought she might have a little cold.
Sophia wasn't thrilled we decided to get her flu shot while we were there. But she wasn't real upset by it.
-Michael

I wanted to post a quick update on Sophia's recovery.
Sophia seems to be recovering from her surgery nicely.
We are continuing the narcotic taper. I think as the doses get less and less. Sophia is either hurting or just unhappy from the narcotic withdrawal.
She seems to whine and cry a lot more than usual. But she still smiles and plays so I am not too worried about it. She actually seems pretty happy at the moment, but she just got her narcotics.
Which reinforces the idea that she is just uncomfortable.
I am sure getting the staples out of her chest tomorrow will help.
-Michael

I wanted to take a minute to reflect on our hospital stay for this surgery.

I was so pleased with Sophia's recovery. She is so strong.

When she came out of surgery the Monday before last, we were sure we were in for a really long stay. When the surgeon told us about the small pulmonary vessels that prevented the VSD closure, we were sure it would be a really scary stay as well.

Fortunately, though it was scary for the first few days, things progressed really quickly. And what was most encouraging was the forward momentum of Sophia's recovery. As anyone who has experienced something like this knows, it is the set-backs that are crushing.

We knew going in that this was going to be a difficult surgery and maybe we were a little more prepared than before. In fact I am sure we were. Since, the last surgery was an emergency surgery.

The hospital staff were really great this time too.

I want to thank Sophia's surgeon for the amazing work he does. It is difficult for me to understand the skill and knowledge necessary to complete surgeries that seem nothing less than miraculous. I would also like to thank the cardio-vascular surgery team. The nurse practitioners were so kind to us and always made sure our concerns were answered and Sophia was taken care of in every way.

And I really have to thank the staff of the PICU. The doctors there were outstanding and work some small miracles of their own.

Mostly, I have to thank the nurses, particularly the PICU nurses. They are the frontline when it comes to Sophia's care. And they in many ways are responsible for the great recovery Sophia is making.

I would also like to thank the CHD families group. I wish we had known of this group sooner. There support was invaluable. They brought Sophia a blanket and they brought us a meal. And Patty and I look forward to participating in this group in the future.

In addition, I have to thank the family and friends that extended themselves to lend us a much needed hand in this difficult situation. Everyone went way beyond what we could have ever asked for with caring for our pets and home, as well as, bringing us meals and offering emotional support.

Before Sophia was born Patty and I had many aspirations for her. But foremost was the wish that she be wise and inspire those who meet her to be more compassionate. We, of course, had no idea that she would face the challenges she does now. But, she has exceeded our every aspiration. Everyone that encounters her is changed by the experience. I do not know the way in which this occurs. But it is my belief that it has something to do with her strength and spirit. And though we have many challenges yet to face regarding her health, I am sure she will make the world a better place by inspiring all that meet her to find the good in themselves and the world. We couldn't ask for anything more.

Thanks again to all that helped us through this difficult time.

-Michael

Sophia is home from the hospital. All her prescriptions are filled and she is resting comfortably in her swing.
I have posted a bunch of new pictures to the Flickr! page.
Please feel free to email us but it would be nice if we didn't get a bunch of phone calls for a couple of days.
Thanks to all for the incredible support you provided us while we were at he hospital. I will post some reflections tomorrow.
-Michael

We are still at the hospital but are going home today.
Sophia has made a record recovery for a unifocalization.
Sophia has shown signs of narcotic withdrawal. So, we will have to continue to taper them off over the next couple of weeks. Other than that, we only have a few new medications for home. Cardiovascular surgery has her on lasix and ibuprofen. And she has some nystatin she gets in her mouth for thrush caused by the antibiotics she received in the PICU.
The narcotics taper will be Oxycodone and Ativan(lorazpam) and will probably be 12 days. Reducing the dose by small amounts each day.
Sophia goes in on Monday to have the staples removed from her chest incision. Until then we just have to apply betadine twice a day.
I will post more over the next few days.
-Michael

Sophia is doing much better from a cardiology standpoint.
Her oxygen saturations are up.
She is eating through her G-Tube and tolerating it. She spit up twice yesterday, but I think she wasn't ready for the volume she was getting. We started a little slower and she seems to be doing better now.
Unfortunatly, she seems really uncomfortable and isn't sleeping. Her last night in the PICU was like that and they gave her some thing called chlorolhydrate (a sedative) to help her sleep. It seemed to work. But last night nothing helped. She just whimpers and looks so grumpy.
I went home last night so as not to have to sleep in the chair in our room. But, Patty was up most of the night trying to comfort Sophia. I will stay tonight.
Hopefully, she will have a better day today. I will post later.
I forgot to bring the camera home, but I will try to get some new photos posted soon.
-Michael

Sophia is out of the PICU.
She is off of oxygen. She isn't showing any signs of narcotic withdrawal.
She has been getting formula through her G-tube.
Everything seems to be progressing well and we will hopefully get out of here in a couple of days.
Thanks for all the support and encouragement.
Things are going so much better and we finally got to hold our baby today.
-Michael

Sophia is off the ventilator and doing well.
She had a little swelling in her airway which was treated with an I.V. steroid called decadron.
She had a oxygen mask for a while, but now she has a nasal cannula.
She is pretty irritable and seems to be uncomfortable. We cannot get her to sleep because of this. She is being watched for signs of withdrawal caused from the high doses of Fentanyl and Versed she was getting prior to having the breathing tube removed. If she does exhibit signs of withdrawal they will likely treat it with a methadone/ativan taper. She had to do this with her last heart surgery.
I will post an update tomorrow.
I have put some new photos on Flickr!. Please check there for more photos from the PICU.
Please continue to send comments.
I will try to go into Sophia's current heart condition in a future post. Stay tuned.
More later-Michael