Molly's Out of Surgery

Surgery went well and Molly is in recovery now. She is still out of it, but Erin and I get to hang out with her. Actually Erin and G-ma and Grandma are currently hanging with her - I am typing this post.

She looks good. She is a tough kid.

Update from the Hospital

Since nothing can ever be simple, we were thrown yet another curve ball this morning when we arived for Molly's surgery. During the surgeon's briefing this morning the doctor who performed the catheterization indicated that there may actually be a second VSD, a muscular VSD, which is rather small and difficult to locate. The surgeon came in to speak with us and gave us all of this new information.

Apparently he would have to close the larger VSD, take Molly off the heart and lung machine to allow her blood to flow on its own, determine whether or not there was a smaller VSD, locate it, and finally go back on the machine to close that VSD. While he explained this to us he was much less assertive than he had been in our previous discussions. While there was no strong recommendation, he seemed happy with our decision to go with a banding for this surgery.

So Molly is in the OR as we speak. Our first update was 10 minutes ago and all was well. We'll know more in an hour, when the procedure should actually be completed.

Molly's recovery and hospital stay should be shorter with this surgery, so that's nice. Unfortunately, as you may recall from an earlier post, this is only a temporary fix. This will get her out of heart failure and ideally prevent us from having many episodes like last week's trip to the ER, but one can't tell. At any rate, if this surgery is successful, and it allows her to be comfortable, and keeps her out of heart failure - all best case scenarios - it will still require a follow-up surgery in a few months to close the VSD(s).

Stay tuned. I'll try to update again later.

Molly's Home for a Few Days

Molly came home from RWJ on Saturday evening. Her fever was down for the better part of two days, and she had held down several consecutive feedings. She probably could have come home sooner, but she was having a hard time digesting her feeds. Turns out there was a slight mistake regarding the amount of time over which she receives her formula. Apparently shortening that time by 30 minutes makes her throw up. Go figure.

Everyone at Robert Wood was fantastic. I was a little skeptical at first because I wasn't a huge fan of the folks in the ER. But let's face it, they have a job to do. And in the first few minutes a 6 lb 10 week old arrives, that job is not to make her dad feel good. So after everything calmed down I changed my tune. Her cardiologist was phenomenal, and took really good care of her. All the residents were great. The nurses couldn't have been nicer.

I think Gavin was a big fan of his visits to the hospital. There were a bunch of animal sculptures in the lobby that talked when you pressed a button. He loved that. He also found some enjoyment in pressing the buttons on all the elevators. And then, of course, there was the play room on the fifth floor. I must admit, I had fun with the Spider-Man puzzle.

As of right now I think the plan is still to have surgery tomorrow. The cardiologists indicated that being fever-free for 48 hours would be enough for them to go through with the procedure. I guess we'll find out for sure in the morning, but as of this morning it looks like it will happen.

More to come.

Yet Another Hospital

As you know, Molly woke up with a cold on Monday that caused her surgery to be postponed. Well she continued to be fussy and uncomfortable for the following couple days. On Wednesday she was extremely warm and was having some difficulty breathing. Erin took her to the pediatrician, who immediately had her sent to the hospital; Robert Wood Johnson, the fourth she has been in since birth. Her fever was 103.1 and her breathing was incredibly labored. The diagnosis upon admission was congestive heart failure. She was treated in the ER, and within an hour or so, she was settled in a room in the pediatric ICU. Erin and I were able to stay with her the whole time. They treated her fever, gave her antibiotics for infections, and put her on a machine that assisted her breathing (she was breathing on her own all along).

Thursday started out fine. When she woke up her fever had gone down and her breathing was stable. She got a little bit upset (because a phlebotomist stuck a needle in her while she was sleeping) and ended up with a spiking fever and needing breathing assistance again. By the afternoon she was sleeping comfortably and her fever was once again working its way down.

As of this morning her fever was gone and she was breathing completely on her own. She is still being treated with antibiotics, and she is being monitored closely, but she seems to be progressing. If she gets healthy enough in the next couple days she will be having surgery Tuesday, as planned.

Postponed

Molly woke up with a cold Monday morning so the hospital told us not even to make the trip down. We've rescheduled (tentatively) for Tuesday, October 31.

It's kind of a bummer because people had made travel plans based on a surgery date of 10/23, and now they have to shuffle things around. It's also tough to mentally prepare yourself for something and then completely scale it back so that you can get ready to prepare yourself again in a week.

Not to mention that 10/31 is Halloween. Hopefully it doesn't have much of an impact on Gavin's Halloween plans. I think this is the first year he has been able to understand, and as a result he is really looking forward to dressing up and going out to trick-or-treat.

I'll post Molly's surgery date when it's confirmed. Once again, thank you to all of you for being so supportive.

The Answer is Yes

We've decided to go ahead with the surgery. Molly is on the schedule for Monday. We're waiting to hear back from the hospital to determine what time she needs to be there. I have no explanation for how we came to this conclusion. But we're in 100% agreement and we're going to stand by this decision no matter what.

More to come.

Decision Time

I was exhausted last night. I had to go back and read what I posted because I was not certain it even made sense. But I promised to keep the site up-to-date. Upon further review it seems last night's post does, indeed, make sense. However, it doesn't offer much detail.

We left the house quite early - before 6 am - for our 8 am appointment at Children's Hospital of Philadelphia. By the time we left it was almost 6 pm. By the time we got home it was almost 9. It was a fairly long day. Physically and emotionally draining.

Here's a run-down of Wednesday, October 19:

6:10 am pull up in front of a dark Starbucks that opens at 6. "CLOSED due to water main break" reads the sign on the door.

7:15 am arrive at CHOP. Using our "sophisticated institutional knowledge" we find our way across the street to an Au Bon Pain for coffee and breakfast.

7:40 am check in on the 6th floor of the Wood Center building in the "Cardiology" department. Find humor in the fact that both the Main Hospital and the Wood Center have cardiology on the 6th floor. We head to the Main Hospital where we're supposed to be.

8 am check in on the 6th floor of Main Hospital.

8:05 am we're back in a prep room. Nurses are asking us questions and filling out paperwork and taking measurements, etc. We're told the doctor who is performing the procedure would like to speak with us.

9:55 am he appears. He is tall, probably 6'5". He doesn't have the same appreciation for personal space I do. He has me backed into a corner. I consider climbing out the window.

10:05 am he walks away having explained to us that there is a chance they may have to put Molly on a breathing tube during the procedure and, if this happens, there is a slight chance she may not be able to breathe on her own again. He agrees to send the surgeon in to see us.

10:10 am the surgeon is sitting with us explaining how the surgery would go and why the catheterization is going to be helpful. He asks us to consider what we're hoping to accomplish from this surgery. He seems concerned that Molly will need assistance breathing and that if she does she may have trouble recovering. He says the catheterization is a good idea because it will give us a lot of additional data. He doesn't seem concerned that Molly will need breathing assistance during this procedure. He tells us he'll contact Genetics to come see us. We're not sure how we feel about the cath doctor; we're positive we like the surgeon.

10:30 am a nice woman arrives to put an IV in Molly's left hand.

10:40 am and three pin holes later Molly has a nice, secure IV in right forearm. Molly doesn't particularly enjoy needles. She also isn't psyched that her last feeding was 12 hours ago.

10:45 am two masked, capped, and scrubbed women arrive to transport Molly to the 3rd floor. We accompany them down the elevator and into the hallway outside the exam room. We say goodbye to Molly and head back up to Cardiology where we meet a geneticist in a private room.

11 am we're joined by a genetics counselor and we continue to answer questions about Erin's pregnancy and ultrasounds. They give us some statistics, which we already know and then we wrap up. We have about 20 minutes so we decide to go outside and make some phone calls.

12:05 pm we're back in the Cardiology Reception area when our nurse comes out to tell us Molly is doing great and she was numbed with local anesthesia and given a mild sedative. No breathing concerns. Next update is in one hour.

12:30 pm we're back across the street at Au Bon Pain having lunch. We decide to eat outside since we have thirty minutes before another update. We make a few more phone calls.

12:50 pm my phone rings. Molly is done. We need to head back to the 6th floor.

1 pm we arrive at the reception area and we're ushered into a conference room; not the same one we met in a few hours earlier. I make a joke about home field advantage and how I think we should switch to the other room. It breaks the tension, but we're both visibly nervous. I refuse to sit down; Erin is maniacally rubbing her "angel of worry". I am assuming they would have told us if something were wrong. I am not sure I am making a good assumption.

1:15 pm Erin's sister Cara arrives to visit on her break (she works at CHOP). We tell her we haven't spoken with anyone yet and she excuses herself to wait in the reception area and eat her lunch (half of Erin's lunch).

1:30 pm Cara is talking to the person at the registration desk. She is using her status as a nurse to gain access to Molly. She passes our waiting room on the way to the recovery area.

1:35 pm Cara is back and she confirms that Molly is ok. She is going back to work. Erin and I are relieved.

1:40 pm the doctor who performed the catheterization arrives to tell us everything went well. Deep down I wonder why no one told us that over the phone and instead made us wait 40 minutes in a private room. I confirm that I am not a huge fan of the cath doctor.

1:45 pm we're back in recovery (which is also the prep room) with Molly. She has to lay still until 4:30 pm. She is mildly sedated but certainly knows we're there. Occasionally she lets out a muted roar. But then she falls asleep again.

2:15 pm the surgeon is back to see us again. We continue to discuss to discuss the risks and scenarios and weigh one versus the other. He shares some of his experiences with us. He gives no indication of what he thinks we should do. Actually that's not even accurate - he doesn't even have an opinion. He recognizes this is entirely a personal decision and we need to come to a conclusion based on what is best for Molly, as her parents. He confirms this by reassuring us there is no right decision. Surgically speaking he has no concerns; he knows he can do the surgery. Recovery is a different story. Progress another still. He wants us to make a decision that "one year from now we'll all look back on and be happy with." He's good people.

2:45, 3, 3:30, etc, we're hanging out. Nurses come by to check on Molly often.

3:45 pm the surgeon returns one final time. He recommends that we take Molly off the schedule for tomorrow and take her home. The decision is agonizing and it can't be made standing in a recovery room on the cardiology floor of the hospital. There is no harm in waiting. He is going to get her on the schedule for next week.

4 pm I call home to let everyone know we're coming home, with Molly, in the next couple hours. I make this call on the way over to Au Bon Pain for the third time today. Three cookies, and another cup of coffee.

4:10 pm I return to the recovery room to find out that the surgeon has Molly on the schedule for Monday. We have to let them know by Friday if we want to have it. I reconsider my previous opinions of our surgeon.

4:20 pm Molly gets set up for her first formula feeding since last night at 11 pm. Her feeding takes about an hour and then we'll be discharged. Cara's shift is over and she is now hanging out with us. The recovery room is now empty except for us.

4:45 pm the geneticist and genetics counselor we met earlier stride through the sliding doors led by a third woman. She identifies herself as, "the one we didn't meet earlier." She washes her hands and asks if she can "look at Molly." She starts to push past me in the chair I am in (something about these people and my space) to get near Molly. The whole other side of the bed is free of people and she is squeezing into a small space between two people in chairs. I completely shut down. I decide I am not going to say anything out of fear that my filter has worn thin; shutting down is safer. I move to the opposite side of the bed and take my I am only here physically stance. A thorough examination ensues. After they ask us the same questions they asked us earlier, and write down the same things they wrote down earlier, and spew the same stats they spewed earlier, the one we didn't meet earlier asks, "So how can we help you?" I swallow my tongue. My angelic wife grins at me, looks back at the one we didn't meet earlier, and politely states, "I don't think you can." Somehow it seems so much nicer coming from her. Have I mentioned how much we like the surgeon?

5:10 pm Molly is finished eating and we're starting to get her ready for discharge. Cara is on her way home. Chinese food is on the menu.

5:35 pm we're walking out of the recovery area and thanking all the nurses who have taken such good care of us. The nurse practitioner [sidebar: we're not sure what the difference is between a nurse and a nurse practitioner. So far in our experiences the only thing we have come up with is that nurse practitioners wear street clothes and nurses wear scrubs. That's probably not it though.] is handing us her card and reminding us to call Friday with our decision.

5:55 pm we're pulling out of the garage and heading home.

7 pm we're eating chinese food and watching Jeopardy with the whole family, at the Logan's. My mom has been there all day, since arriving from Boston at noon.

8:40 pm I am trying to get Gavin into the shower so he can get to bed at a reasonable hour. I have promised him he can watch a show before bed. His lunch still needs to be made. Tomorrow is the big fire house trip. I just want to go to bed.

9:45 pm Gavin is asleep. My mom is holding Molly while she gets her formula; they're both asleep. I am blindly typing an update on this blog. Erin is on the other computer typing a message to her support group. Very, very tired.

Catheterization Pt. 2

Molly went in for her cathererization today. Ultimately all went well and we're home now. After the requisite four hours of lying flat, we were able to bring her home. If we had decided to go through with the open-heart surgery that she was scheduled to undergo tomorrow, she would have had to spend the night. Obviously we chose to hold off.

She is currently on the schedule for Monday. We're supposed to call the hospital Friday with our decision.

I'll write more detail about the day tomorrow morning. Far too tired right now.

Catheterization

We returned from CHOP this afternoon. With the exception of a little blood being drawn Molly is just fine. We're scheduled to be back there tomorrow morning at 8 am when they will begin the catheterization. She has to lie completely still for six hours - requiring sedation - so she'll probably spend the night tomorrow night. Not sure yet.

Although we met a number of doctors and nurses today, we didn't get a chance to meet with any surgeons. More to come tomorrow after the tests are done. There is a possibility she could go for surgery on Thursday. Not sure yet.

Seems to be a theme: Not sure yet.

CHOP

We're heading to Children's Hospital this afternoon for some pre-admission tests (chest X-ray, blood, etc). This procedure will take a few hours and then we'll head home. Tomorrow morning, bright and early, we'll likely head back to Phila. Tomorrow Molly will be admitted for a coronary catheterization and depending on how things go she will probably have heart surgery later this week. That would be open-heart, for those who read the post the other day. We're keeping our fingers crossed. Please do the same.

Molly's Big Weekend Out

Molly was nine weeks old on Thursday, October 12. We certainly haven't been keeping her in a bubble, but we have avoided exposing her to extended visits to crowded places [if only I had a good excuse to do that]. Since this past weekend was so nice, we decided to get her out and about. It ended up being a weekend of orchard visits.

Saturday we went to Delicious Orchards in Colt's Neck. Sunday to Terhune's in Lawrenceville. We got pumpkins at both places, and donuts at both places. We also picked apples at Terhune's. Lots of fresh air, a hay ride, a bee sting...all in all an eventful couple days.

Molly's Second Echocardiogram

Molly had an echo done when she was born. It confirmed what we already knew: she has a large hole in her heart - a VSD. Yesterday she had another. We've seen the cardiologist a few times, but this was the first time she wanted to do a follow-up echo.

The process was frighteningly similar to the day we went for Erin's ultrasound and learned of Molly's condition. The technician was thorough and silent and then the doctor followed up with a parallel examination. Silence. Less disturbing this time, however. I guess because we basically knew what to expect.

Right.

So once again we get just a little unexpected wrinkle. VSD, yes. A few other defects, yes. But in addition we learned that many of the problems Molly is having gaining weight can be attributed to these problems with her heart. For the last several weeks we've been doing all the things we possible could to increase her calories/volume, but it turns out that's not going to help if her heart has to continue working as hard as it is currently. She basically burns all the calories she takes in; it's like someone with a healthy heart running wind sprints all day.

Now we're faced with yet another decision - or two. First: surgery or no surgery. Second: more invasive or less invasive. The more invasive surgery is open heart surgery where they actually open up her heart and attempt to fix all of the defects. The less invasive surgery would be to band an artery that is currently allowing an excessive amount of blood to flow through it. The band would be put on to decrease the amount of blood traveling through it, and thus increase the pressure in the left side of the heart. Both surgeries have their pros and cons.

Actually surgery, in general, has its pros and cons.

52 Hours in the Hospital

So we were admitted at dinner time on Tuesday. The room was small. There was no bed for an adult. There was a pull-out chair, and they eventually secured a recliner as well, but there was nothing comfortable about this room. It's a pediatric floor. Would you assume most children who stay there are accompanied by a parent? Maybe two? Would making the room comfortable for those people make sense?

Why are we in the hospital? Right. Of course.

Molly was admitted on Tuesday so she could have a feeding tube inserted. She has not been eating particularly well for the past few weeks and this is going to help. We're going to up her intake, but distribute it over a longer period of time. It looks worse than it is. It's not uncomfortable for her and the tube can actually stay in place for about six weeks. If all goes well, she will gain some weight and some strength and by the time a tube change would be necessary, tube feedings will not be.

Worst Birthday Ever

OK so I know this blog isn't about me...

Tuesday I turned 31, and it was the worst birthday ever. It started out pretty well: my son wished me happy birthday right away, my wife gave me some excellent winter workout gear, my family called me bright and early. As soon as I got to work, all down hill.

I guess I shouldn't complain. I have mentioned perspective before in this space and this seems to be completely out of focus. But for some reason this year it really got to me. Now don't get me wrong - I practically had a breakdown last year for 30, I am not trying to hide that fact. But this birthday was much worse.

Work was just crazy stressful: a lot going on; things taking longer to complete than necessary; meetings; unreturned phone calls/emails.

On the bright side my mom sent me a delectable cheesecake. Unfortunately the mail room failed to take the time to deliver it to me, and I had to take time out of my already hectic afternoon to go over there and get it. Love the idea that "REFRIGERATE IMMEDIATELY" yields little more than a phone call a few hours later. Remind me not to put "FRAGILE" on anything coming in or out of our mail room. The cake was consumed. I had a small piece the following day.

But here is where the "Worst Birthday Ever" title was secured: we had to admit Molly to the hospital at about 6 pm. Nothing to be too concerned with; it was a planned procedure. But we got a whopping two hours notice, and we were supposed to go out to dinner. I spent the last six hours of my birthday in a cramped, old hospital room witha tiny little TV. I know, I am a whiner. More on the actual things people care about in the next post.