Santa Baby

Well I won't bury the story on this one: We had our UVA followup yesterday and because Molly has been gaining weight and eating better, they want to HOLD OFF on listing her for heart transplant. This is actually pretty huge because UVA has been adamant that heart transplant was her only option left. We had already done all the medical tests and social work screenings and the application was sitting at our insurance company waiting for final approval. We appreciate that we have doctors who are willing to reevaluate.

As with any good news about Molly, it may only be temporary. Her health is still volatile and her heart function has not really improved any—she is still considered to be in moderate heart failure due to dilated cardiomyopathy. It seems like overnight she just started eating better and gaining weight faster even though nothing about what we were doing had changed. Of course, we're hoping it's a sign of better things to come. But as always we're scared that she could just as easily regress as she has progressed. But for now, were taking it as a Christmas miracle and birthday present for Brian (today!).

We knew she was doing better going into the appointment (though still has that dang feeding tube), so Brian and I were hoping for news that her heart function had improved. He said it was the same. When I pushed he said it was maybe a "smidge" improved. But also that he does not expect her heart function to really get any better. The damage is done. I asked what this meant long term...are we only delaying the inevitable transplant? Could she live a life in moderate heart failure? He seemed to say yes and that he was following a teenager right now in even worse heart failure than Molly who is able to go about her life. Frankly, our ultimate goal is to get Molly out of the woods and be able to keep her heart (heart transplants do not last as long as you think they might...average 15 year life span on a new heart and 2nd transplants don't last as long). I truly believe that if we can do this, we can wait for new medical procedures to help her that will avoid ultimate transplant all together. Even right now there are trials for a band that fits around the heart that squeezes the ventricle for you (heart failure is basically that your ventricle doesn't squeeze as it should) and another study about injecting heart stem cells (not the embryo kind) back into the heart. It has already shown to improve heart failure in adult patients.

Anyhoo, that's our hope, but it's very far off. We're still one day at a time and hoping to get through the winter without any hospitalizations.

Also during our appointment we witnessed a first. They were completely giddy because Molly is finally on the growth chart!! After being diagnosed with failure to thrive and having a pretty volatile up and down growth she is finally on the chart. In fact, her growth "curve" for the last month has actually been more of a 45 degree angle. Steep gains. She is officially at 6.62% (the nurse tried to say 6.6% but we worked our ass off for that .02 and we're taking it :). Last month, she was well below 0%. Her height also made it on the chart entering at a whopping 8 1/2%! 

Some new stats on Molly since she is now almost 11 months!

Master of:

- waving

- hugging (animate and inanimate objects)

- showing how big she is (sooooo big!)

- peek-a-boo

- standing with support

- high five-ing

- making her parents get her things she can get herself

She may or may not have:

- newfound separation issues as witnessed by suddenly waking up in the middle of the night, every night screaming unless we pick her up (which we try very hard not to...sooooo hard)

- said "hi" to mom

- chosen a favorite cat

We're staying home for Christmas this year to avoid inevitable travel sickness. But right when we thought it was going to be just us, Brian's family booked a hotel to come for Christmas! Yay! So we'll have a big 'ol Coffey Christmas. Hope all is well with all of you. Thanks for all of the continuing prayers and support. It's working!

We're working on uploading some videos to YouTube and will post when they are up!

It's been a while

So I got tired of writing everything down, I guess. Not having written since July and lots has happened. So here is a quick review:

Home:
We went home and everything was progressing great. Her heart function was showing minor improvement every echo. The docs were happy, we were happy and Molly was happy. She started gaining weight normally too, which was the first time EVER. So all yay. Then at the end of August...

Hospitalization #4
Molly stopped eating suddenly one day and just seemed off all around. We took her to the pediatrician (we hoped that one of these times it would be something normal) who noticed her breathing harder than normal. So he sent us to her local cardiologist who did an echo and saw that things were the same. He sent the echo to UVA just incase. We then got a call from UVA to come in for an appointment in 2 days. Uh oh... So they found that her heart function started decreasing and decided they needed to adjust her medications. We were at UVA for 8 days so they could make sure she tolerated the medicine fine (which she did). This was when we were told that she was "accidentally" taken off a pretty important medication. Great! I wonder why her heart was getting worse. Fuck.

And this is the trip that marked a big change in how the doctors are viewing Molly's condition. More on that to come.

Home:
We went back to life at home with no changes except Molly got back to eating well and she just wasn't growing as much anymore. In fact her weight gain started slowing before the hospitalization. My hunch is that she was slowly declining since being taken off the medication. Her weight gain reflected this. The docs wanted to do a cardiac catheterization to measure pressures in her heart. With her last blip, they wanted to make sure her heart wasn't worse than they thought it was. It should have been an outpatient procedure, but...

Hospitalization #5
Her second hospitalization was just 1 day. I like to think we're getting shorter and shorter with longer and longer in between, but we'll see. She had a cardiac catheterization to measure pressures in her heart and had a bad reaction to the anesthesia. Her blood pressure dropped really low. But she recovered immediately after the stuff wore off (with some help from dopamine in the meantime). But because she's Molly they sent her right to the ICU for observation. Chelsea, the infant educator, came by to say hi. She said that she saw Molly's name written on the board to go to the general pediatric floor (which was already reserved for Molly before the cath even started for observation). She also said when she saw her name was erased from that board that she would have thought any other kid would have gone home. But Molly? She knew to come to the ICU to find us. Haha?

Home:
So we're back home again. The catheterization numbers showed mildly elevated levels, which was all to be expected given her poorly functioning heart. So phew. But remember how I said above that the docs shifted their views on us? Well, that shift is that they are recommending we list Molly for heart transplant. We had an appointment mid-August and the docs were literally doing little dances because her echo and all looked good. Then when she took the step backwards (2 weeks later), all of a sudden they shifted to Molly being completely fragile and needing a heart transplant. Their reasons are because she took this step backwards (which they admitted was most likely a medication screw up on their part, but suddenly they no longer took that into consideration/were behind their initial statement) AND because she wasn't growing as well anymore (again...medications AND nutrition...more on that later).

Brian and I think they made up their minds about transplant when her function went backwards (but then went back to normal within hours of being given the right medications, again they don't really care about this now). Dr Schneider said he would talk to his friend who runs the UCLA Heart Transplant to get her opinion and also float it to the docs at UVA. All said they agreed with listing her status 2 for transplant. Status 2 means we get to stay home and she is on the list but not as a priority. Status 1 means she has to be hospitalized while waiting and she would be priority.

I asked Dr S what would change his mind about transplant and he said of everything the largest factor was that she is not growing as she should. OK given. She is tiny. She's 8 months and still only 12lbs. However in the midst of all this I realized the second big mistake, which was UVA nutrition telling us to actually feed her less than we should have been. To be honest, I should have known. I should have done the math instead of just following their instructions. But  didn't and molly wasn't getting what she needed. So we instituted a more agressive nutrition plan. The feeding tube is back in because Molly just cant eat all that she needs to compensate for her heart function. So she eats during the day and we supplement with more calories through the tube at night.

Dr S said if she would start gaining .5 to 1 oz avg per day, he would change his mind about transplant. Well guess what? Molly is now getting the calories her body needs and she's gaining about 1 oz a day. Surprise, fucking surprise!

So we just went back to UVA for a follow-up. They got the news about her weight gain, and didn't really care. Yup. Didn't care. In their minds...full speed ahead for transplant. They said it didn't count because she can't eat all that she needs on her own (aka needs the tube).

So now we're in the process of getting second opinions and trying to find someone who thinks transplant now is premature (like we do). We're going to be getting opinions from CHOP (Philadelphia) and NYU (where the leading heart block researcher is). Hopefully they can give us some hope. In the meantime, we just need to make sure Molly doesn't take any more steps backwards. Which brings us to:

Soooooo, this is the part where we break up with you. Yes, you. It's not you. It's us. Well, it's Molly. One thing that the doctors have been hammering into us is that Molly is so fragile that any illness could be detrimental to her. Her heart is so weak that it just might not be able to withstand something like the flu or another infection/virus. Well going into winter, this means that we decided to take Molly out of daycare (our beloved Kathy is on hiatus) and I had to give up my classes this and next semester to stay at home with her. So the break up...we also have to limit her contact with people (aka germ carriers). So we're on a break from visitors and visiting until the sick season is over (Molly says, "See you in May!"). Skype will be alive and kicking, though, and we'd love to see you there :)

Over the next few weeks, we'll be getting all these opinions and I'll be better about more regular updates.

Warm feet

Well we did indeed get spring from UVA last Thursday. While we still love our UVA family, it was time to GO! Our biggest test we had to pass before going was learning how to put the feeding tube in. My second try at putting in the ng tube went like this:

ME: ok I'll try again.
NP Carol: You'll do...
ME: I'm done!
NP CAROL:...fine.

Second time is a charm it turns out, for me. Brian was a pro from the beginning as we all expected. And because we found a smaller width tube, Molly doesn't really mind it at all. Phew. So instead of putting it in and taking it out every night, we just leave it in. Saves all of us some stress.

So we got our kit of parts for the ng tube (pole, pump, stethoscope and more supplies than you'll ever need) and it's quite easy to set up and use. Frankly it's a lovely backup net to have and we're all a lot less stressed because of it. With that said, MOLLY HASN'T EVEN NEEDED IT since day two home!! They say that they eat better at home, but I didn't really believe them because Molly has never followed conventional wisdom. It goes to show that when I'm all into the tube, Molly decides she doesn't want it anymore. And she's even been eating a bit over her mar. So go eater! Brian and I have spent the last few days just dumbfounded at how easy it is to feed a healthy(ier) baby. They just eat!!? Within a half hour!!? Of course she has the typical feeding distractions and gas and such. But geez. This. Is. Easy.

We also have a home nurse coming in a few days a week to make sure she's doing well and most important...growing. So far so good. From Friday to Monday, Molly gained 5 oz! As a comparison, Molly gained 6oz all of last month. Yes, month. She's coming back tomorrow so we can confirm that she wasn't just needing to have a 5oz poop or something.

And most of all this is a major indicator of her health improving. It turns out a healthy baby eats. At least a healthy Molly does. Right after surgery when we went up to see her I remember feeling her feet and they were warm. The doctors said it's an indication that her heart is actually pumping blood now to where it needs to be. A few days later I actually asked the doctors to check her out to see if her feet were too warm (I'm crazy town). I remember the doc looked at me and said, "Well, I guess you'll have to get used to what a baby should be like." It took us about 2.5 seconds this time to adjust to her eating well.

Go Molly go!
Oh and hospital pics to come soon on Facebook!
Baptism this weekend too so cute dress pictures to follow.

Going home

Most likely today, and if not...definitely tomorrow. Woo!

We're back on the general pediatrics floor here at UVA. It made us nervous to leave the PICU since they monitor much more closely (and would have caught the whole kidney failure thing that the floor docs neglected to catch), but things have been rolling fine. We asked to stay in the PICU and they agreed if they didn't need the bed space. Well this was on the 4th of July. And guess what happens on the 4th of July? People blow their hands off with firecrackers. And not just people, but kids. So they had multiple traumas come in and we were bumped. Oh well. We got bumped back to a private room, so we can't complain.

Molly is still eating better than she ever has. But it just hasn't been as much as the nutritionists want her to eat. So we're going home with an ng tube (feeding tube through her nose and down into her stomach). We'll be bottle feeding her during the day (count those fucking calories!) and whatever she doesn't take will get put down the tube at night. We hope this is only temporary as Molly has been eating 80-90% of what they want her to eat. We're hoping that last 10-20% will come once she's back home and less stressed out by general hospital antics. We hear this is often the case. But in the meantime we don't have to worry about her not getting enough nutrition to heal and play catch-up growth. She's still only 8 1/2 pounds, so every bit helps.

If we go home today or tomorrow depends on how fast we learn how to put the ng tube in. I tried yesterday and it's not as easy as you would think. Turns out that hole at the back of the nose is hard to locate. Round 2, though, is in a few minutes. It's sad because she clearly hates it, but it's not as sad as when we had to give her the lovanox shots for her blood clot. So the methods that UVA sends us home with to torture our daughter are getting less and less severe.

Otherwise she's still doing great. Smiles at everyone who comes in (until they try to touch her), has discovered her feet and has no major organs failing anymore besides her heart (though the surgery we're here for seems to show promise for that too!). Win? We'll take it.

Who needs the beach and picnics and fireworks anyway?

Well this marks the 3rd holiday that we'll be spending here at UVA. Valentine's Day and St Patty's Day being the first two (hey at least we got Easter out). We're working on 3 months in and 2 months out of the hospital for Miss Molly girl. A sad percentage, but one we hope to fix really soon.

We were working on discharge either Sunday or Monday. For those of you counting that's today or tomorrow. Well Molly had other plans. So we got moved to the general pediatrics area of the hospital to work on feeding. The docs also wanted a few more days to tweak her medications before going home. Molly was going strong on feedings, then about 3 days ago hit a wall. And the wall hit her back. She went from eating 80 to 90% of what they wanted her to to 25%. It was really sudden and getting her to eat was a huge struggle. She kept this on for about 36 hours. We began having discussions about putting the tube back in, which was depressing because she was doing soooo well.

Brian and I began thinking up every reason in the book why this could have happened. At the same time we noticed her heart rate had dropped across the board about 20 points. We weren't sure if it was the pacer modifications or what. We thought the eating issues could be teething, thrush, sore throat...

Finally the morning came (Saturday) that the cardiologist came in. This was one we hardly deal with being the weekend and all. When I started giving him my list of reasons why she might not be eating, he cut me off and said she was just a crappy eater and that we were going home with the tube. Not only did he tell me that teething was "a myth", but he also said if something was wrong with her heart beat being lower, she would look sick. Which she didn't. Smiling away as usual.

So the nurse brought in the tube and we were prepared to just deal with it. Literally 5 minutes before the tube was going to be put in, one of the docs comes in to say that they need to recheck a blood level because it came back really high and they were sure it was a mistake but needed to recheck for their records. Then about an hour later, the same cardiologist came in and told us the level was not a mistake. It turns out Molly's potassium levels skyrocketed from dehydration and as a result her kidneys were failing. They moved us back to the PICU and immediately began giving her fluids and stuff to flush potassium. Fortunately she started responding right away. After a day of this, we're happy to report that her potassium is down (now too low and they are giving her more potassium...seriously) and her kidneys are functioning again. And guess what? Her heart rate has gone back to normal AND she's eating again. And not just eating, but ravenously eating. Full feeds eating. So suck it doctor who blew me off and told me she is just a bad eater.

Of course the inevitable "will they make her too wet again" is an issue. And one we have been vocal about. We're hoping they just let us cut and run before something else happens.

In the midst of all this craziness, they stopped one of Molly's meds that is a bit hard on the kidneys. Last night they discussed putting her back on Milrnone (aka fucking Milrinone) if she couldn't go back on the enalipril. So they did bloodwork this morning to check her BNP to make the call about enalipril or not. This led to our best news of the day...to recap, BNP is a marker of heart failure. The higher the number, the worse the failure. While the numbers themselves don't mean anything specific, in general zero is best and the farther you get from zero is not good. Molly's was 3200 on admit. 15,000 post-surgery. 2500 a week ago. And now? 135! Yup. Not a typo. 135. We're not sure what this means as far as her function yet because they haven't done an echo in over a week, but it's a really good sign. Hopefully they'll do an echo tomorrow and we can see what's going on in there.

So the ups and downs and ups continue. I think Brian and I are the only parents who are happy to go back to the PICU from the general floor. Molly is now doing great AND we get our much comfy in-room bed back.

So Happy 4th. We hear that we'll have a good view of fireworks from our hospital room. Molly does like looking at lights so we consider it a win.

The D Word

So the yang has been going well. After my talk with Dr J, I decided to just release all my expectations and go with the flow. I was ready for however long we needed to be here and do whatever the docs say we needed to. The second you give something up, it seems to come to you...

You know when doctors start throwing out the word "discharge", you have about a week or so left barring any unforeseen things. They started talking about it on Monday, so keep your fingers crossed.

It has been a big few days for Molly and mostly all for the good. We got an awesome new attending physician in the PICU who moves fast. His first mission was to get Molly off the Milrinone and her central line out asap. Yesterday cardiology came by to say they were going to slowly wean her off the milrinone and possibly she'd be off by Friday. 10 minutes later I'm in rounds and Dr Willson (my fav new attending) is directing them to stop it immediately and pull the central line. I thought cards changed their mind, but when I mentioned it later, they were surprised (but fine with it). Yay! Dr Willson came by later to remove her central line, thus making Molly wireless once more. He said his reasons for the quick move was risk of infection. He said they had a kid the day before who was supposed to get their line out the next day and got an infection. Now they are stuck here for 2 more weeks on antibiotics.

The EP has been in the do some tweaking on Molly's pacer. We've been noticing that sometimes her heart rate suddenly drops to the 100s for no reason. When he did the check he saw that her atrial lead (the one that senses her atrial rate to tell the ventricle what to pace at) was picking up some reverberations from the ventricles pace and trying to pace that. So the machine was switching modes and doing this drop thing. It doesn't hurt her in any way, but they want to tweak it so it doesn't happen. Yesterday they made the lead less sensitive and she's had way less spells of this. Again, these pacers are made for old people, so retrofitting them to work for a baby takes time and adjustments.

So Molly is off all her iv meds and back on all her oral meds (with a few more added for bonus). We've officially crossed over into only being here for feeding. She is still not eating the volume that they need her to eat in order to get all she needs. Cardiology said they would be fine sending us home with an ng tube (feeding tube) so we can supplement whatever she doesn't take by mouth. We're fine with that too because she needs the nutrition. However, Dr Willson (in another awesome move) let us pull the feeding tube to see how she would fly on her own. It's been 24 hours and Molly is eating well. At home she ate about 375 ml a day. They want her to eat 560 ml a day. In the last 24 hours she ate 475. HUGE improvement after just one day. So we're working with speech therapy (yes, they actually work on feeding issues with babies) to help her get more. Working through some reflux issues and today trying to add some rice cereal to the bottle. Apparently adding some rice cereal allows their stomach to empty quicker. They have labelled Molly "quick to satiety" meaning she eats and once she feels the food in her stomach, she's done eating. We're hoping the rice cereal empties her stomach a bit more so she has more appetite. Thank freaking god we have specialists helping us.

Otherwise Marie and Hannah are back! And so is Brian!

So once Molly perfects to F word, we'll be D worded. If she just doesn't get there, a feeding tube it is. Whatever needs to happen to get us back home!

Wean, baby, wean.

It turns out, I am a medical conspiracy theorist. When Molly responds poorly to something I come up with about 8 different explanations for what could be going on. Then I systematically go about disproving each theory. It helps me deal with things, but I think it drives the nurses and docs a wee bit nutty.

Today my theory is that Molly hates her feeding tube. She randomly gags. When we feed, she's hungry but as soon as she goes for the bottle and starts to swallow she freaks out. Hates it. But she's still hungry. I think she's a bit of a prima donna about this, but it's annoying because we need the tube still as she recovers. So she's a horrible eater. I'm not sure how to resolve this. I guess we'll wait until she's more stable and then pull the tube and see if it makes a difference.

There are just so many other small things that we have to worry about on a daily basis that it's tiring to write about. Potassium, heparin, sodium, calcium, levels, levels, levels of everything! And her pacer is pulling shenanigans that I still don't understand (but according to cardiology is fine).

They have begun the milrinone wean so hopefully this is the beginning of the end for it and her central line (the iv access). The longer she has in her central line the higher the risk of infection. So everyone wants it out as soon as possible.

yin and yang

Had a long chat with cardiology today about their plan to get Molly out of here. It involves slow moves and lots of patience—two things I'm really bad at.

Yesterday was a good day for Molly. Towards the end she even started eating better and we were hopeful for a good night. Ah hope. So cruel. Molly's blood pressure dropped, leading them to give her some fluids. Remember how she was super wet before? Well now she's super dry. The pendulum of medication has swung its ugly head again. Too many diuretics. I ran into one of our old nurses, Cailla, this morning and told her what happened. She said that I told her that would happen last week. Ha. But they didn't want to cut her off too soon and have Molly go back to being wet, which was a MUCH worse situation.

While it was a good day, her night was much worse. And poor Brian had night duty again, further proving that he always gets her on bad nights. She (and he) slept only a few hours. We're hoping that with more fluids working their magic inside her and getting her more sleep today that she will rebound. Fortunately our nurse today is helping us. Michelle's philosophy (and one she teaches her nursing students) is "Never wake a sleeping baby. Their temperature can wait."

So they are stepping down on her diuretics today and seeing how she tolerates it. If she does well, they will give her a test dose of enalipril tomorrow. If she tolerates the test doses, they will begin the wean from milrinone to enalipril. The steps forward are lovely. I'm getting tired of the steps back. I don't know how the docs can stand dealing with this crap all the time.

While talking to Dr Jayakumar today (cardiologist), I realized that I'm a rabbit in the turtleness of medicine. So I'm going to try to channel my inner yang as much as possible for the rest of this trip. Wish me luck.

Moving on up

Well, we caught another break yesterday. Cardiology did a follow-up echo of her heart function and they said it clearly looks better! It's still pretty bad but an improvement is a positive sign. And it's not only better than Friday's echo (day after surgery showed WORSE function), it's better than her echo BEFORE surgery as well. Dr Schneider said he just wanted to get her back to the function she was at before we got here, but she's already exceeded that! Also, her BNP (measure of heart failure...some take more stock in it than others) was 3200 when we came in, 15,000 after surgery and now is 2500. The numbers don't matter as much as the trend does. And she's trending better! Finally!

Brian and I are actually quite scared to even share this news, because whenever we feel happy about something this little girl throws us a loop. So let's just say yesterday was a good day and hopefully today and tomorrow will be a good day.

In the irony department, I walked outside of Molly's room to have a breakdown about how horrible everything was going. While I was crying in the hallway to Rebecca (she has amazing timing because the doors opened to the PICU next to me with her on the other side right as I was losing it. Bad for her, good for me), they came and did the echo and we got the good news. We've dealt with things turning for the worse in such a short amount of time, so I guess we were due for the opposite at some point.

So cardiology is "cautiously optimistic". Today they are adding back her enalipril to her daily medications to make sure she tolerates it fine. They are keeping her on her heavy diuretics for another 24 hours then will begin to wean her back to her home dose of lasix. And they are going to up her carvedilol. All these things shouldn't take much time. The time consuming one could be weaning her off the milrinone. My guess is they want to do it slow because that's how they work. HOW slow is yet to be answered as we're still waiting to talk to them today. This morning I would have said a few days, but at rounds this morning a fellow casually suggested that her improvement was because of the milrinone and not the new pacer. This made me nervous that that is what cardio thinks too and that they will wean her really slow (and of course it made me nervous that he could be right too and this is a false positive). We'll see what they say today... or Molly could just boff her central line again and force cardiology to pull the milrnone plug...she is so bossy with these docs.

Word is we're also moving to the floor today. This is good in that it means they consider Molly to not need intensive care. Bad in that we go back to sharing a room and sleeping on a recliner chair. We might get a reprieve if they don't have a room for us.

Revenge of the feeding tube

It hasn't even been a week here and my patience is already fried. It took me about 7 weeks last time to try my patient (truly). This time...5 days.

Molly got a lot worse because her fluid wasn't coming off as fast as they hoped. So her heart function is decreased even more, which is backing up her liver. We thought it was constipation at first, but after demanding a chest xray, we saw it was her liver. Turns out, an enlarged liver hurts. A lot. So Molly was not the happiest of campers. Meaning she was in pretty excrutiating pain at times. She stopped eating well. She screamed a scream I've never heard before prompting the next door neighbor family to dub her the "cat baby". All in all, you can't imagine how painful it is to watch until it's forced on you.

As I saw her getting worse and not better, I turned into what I call "bitch mom" on Monday. I had the nurse page the PICU attending and cardiology attending because I didn't feel like we knew what their plan was and why it wasn't happening fast enough. It was already three days of "gee her chest xray is still wet" and I was sick of it. So finally yesterday they threw the big de-fluiding guns at her and shock and surprise, she's lost a ton of fluid! They showed me the chest xrays before and pointed to her chest saying it was wet. I didn't understand what I was looking at until I saw today's xray. Wow, huge difference. Her liver is also smaller than half of the size it blew up to. So she's definitely feeling much better. Yesterday was her first smile since surgery courtesy of Minerva. And this morning was a 5 minute smile fest with Minerva. This cat is gold.

I dd make the mistake yesterday of allowing her to skip her nap because she was finally awake and playful and back to general Mollyness. But I forgot that general Mollyness also includes that she turns into a demon seed when she misses her naps. My bad. So she had a major MMD (Molly Meltdown). I also had a meltdown because it was hard for me to separate her misreableness from being over-tired from her misreableness from being here and still healing. So it sucks. Plus Brian had to go home yesterday for a 5-day class. Which sucks for both of us.

Fortunately the B-team arrived in the form of Hannah and mom Coffey. Today we basically are sitting around and whispering to each other because I'm Molly to sleep more so no more MMDs. It's lovely.

Other happiness is that Ann F got to visit and give me a much needed chai break. Shannon came with amazing, amazing food that she made fresh from the farm veggies. It's funny how you can easily not eat vegetables while in the hospital, so it was incredible and yummy mummy. Plus, you know, Shannon was a lovely visitor and poop-encourager (when we thought Molly was constipated). And Laura (Sam's mamma) came yesterday and brought much needed perspective when I was melting down. NICU mom's have a way of calming down other NICU (now PICU) moms. Dr Mike also made a few visits. As did Norma, everyone's favorite baby teacher.

I also finally ran into the first nurse that I hated. Fortunately we only had her for a day. She acted like Molly had 4 days to live or something. She would say things like, "Well a baby as sick as Molly..." and "Well maybe what's going on is just her heart failing more and not recovery from surgery." Today I ran into her and tried to be nice saying that I agreed to their putting a feeding tube in (more on that later). She responded with, "Yeah a lot of babies who are waiting for heart transplant have them." I wanted to punch her.

So feeding tube is back in. We fought it really hard, visibly shocking the nutritionist. It took us so long to get the docs to pull it out in the NICU that I just had flashbacks of being here for 2 more weeks because they don't trust she'll eat once they pull it out (shocker, she did). In the end she convinced me that they work completely differently from the NICU and that she only needs it short term while she is too much in pain and weak to eat her full feeds. The argument that got me was that it's stupid to ask a baby to heal if they are malnourished. Me and Brian looked at each other like, "fuck. they're right." After months of not having it, she definitely notices it more this time. She has these sad little gags. But hopefully it will get her back up to speed and out of here sooner.

So she's on an upward trend. The days (and nights) are draining for all of us. In many ways it feels like we're right back at the beginning with her on Milrinone iv and feeding tube. Which is depressing because it took so much time and energy to get her off them. But here we are.

The dance

While we are more understanding of the ups and downs of recovery, it still sucks. It is just a delicate balance of medications that is constantly changing and evolving based on her reactions to them. Anesthesia causes nausea, which made her not be able to keep down food at first, which means they give her morphine instead of an oral pain med, which causes nausea. So they give her a stomach calming agent so she can get down food, which causes constipation, which causes her to not be able to keep down food. And oh yeah, the oral pain meds they are now able to give her (basically percoset)? They make her nauseous too. But she needs something stronger than tylenol because of her surgery incisions. Round two: her surgery causes her to put on excess fluid on her body, which causes her to get fluid in her lungs, which makes her panic that she is not able to breathe well. Which makes her throw up. So they give her lasix to shed the fluid (which has been starting to work). Which, wait for it...can make her nauseous. What else? Her blood was a bit acidotic so they gave her saline with sodium bicarbonate in it. Now she has too much sodium bicarbonate. And the doctors are concerned that she is not eating or sleeping well. Anyone have any thoughts on why that may be?

Brian earned his dad of the year stripes this trip because every time he stays over at the hospital with her (we alternate nights), she has a horrible night. The first night was getting extabated and just general waking up from surgery crappiness. Last night was can't eat, can't poop, can't sleep freakouts every hour or so.

With all this said, we do think she's getting there. Slow overall forward progress each day. The surgeon came today to check her wound and the stitches are holding strong. Hallelujah! Now we just need to practice our dance moves a bit more...

Breathing is underrated

Molly had another rough night last night, but it was less rough than the night before so we'll take it. She still has the normal post-op pain, but she's also very "wet" and it manifests itself as just a bunch of gunk in her lungs. It affects her breathing and we think makes her the most uncomfortable. The nurses suck it out of her through her nose and mouth, which, well, sucks.

They are starting her on Milrinone again for a few days while we work on getting her to be able to keep down food more consistently. Milrnone is the iv med to help her heart squeeze. They are also putting her back on her lasix, which keeps her more dry. They were supposed to restart it yesterday, but she threw up the dose and for some reason they didn't try again. That's frustrating because I don't think she'd be as wet (and uncomfortable from it) now if they had started giving it to her iv when cardiology wanted them to. But they are starting today, so hopefully we see improvement soon...

High as a kite

The night before Molly's surgery, we met with the surgeon Dr Gangemi.  told him that Miss Molly just needed a break this time and to see what he could do to make it happen. When he came to talk to us after the surgery, he said, "Well, I think she got the break you were talking about." And you could just tell how happy they were (Dr G and Dr McDaniel the EP).

We waited until about 12:15pm until they called us to pre-op. I was nervous that Molly was going to be a mess with not being able to eat, but she was a super trooper. It helped that she has a new favorite person in her life, which is Minerva, the cat that Rebecca knit for her. She sees it and lights up. Molly's first friend. So Minerva got her through it all. Then she actually fell asleep in pre-op (you know a baby is used to hospitals when...). We got her in her little gown and they actually took her still droopy from sleep.

They decided to not mess around, knowing Molly's history of complicating matters. So she got a central line (if you recall, that's the thing that dislodged after 2 weeks last time) in her upper left chest area. This was mainly for backup in case she needed to get blood right away. Fortunately they didn't need it. BUT it was this (as usual) that was the biggest complication of the day. I swear, the girl hates her lines. So they tried to get one in her neck at first, but that failed because her veins were too small. The second one took, but in the end it took just as long to get that in that it did the entire actual surgery!

Surgery was smooth. They did a thorachotomy to get to her left ventricle. This is a side incision and turns out is much more painful in terms of recovery. But he was able to expose the ventricle well, put on the leads and they tested great from the get-go. He then made the other incision and took out her old box. Because the new box is bigger he had to make more of a pocket for it to sit, but he said it went fine. Also, when they started the bi-ventricular pacing, they said her blood pressure shot up about 20 points to a much more normal range. Molly's blood pressure had been so low that nurses couldn't get it with a cuff anymore. They said they've never seen such an automatic reaction before like that and it just reaffirmed how much she needed this surgery. The higher blood pressure is an indication that the heart is pumping the blood more efficiently. Hopefully it stays this way long term and is an indication for more improvement to follow. But that's, like, step 2e and we're still at 1a. Well, maybe 1b. Well I guess if you count her other hospitalizations since birth, we're probably at 18b, but I digress.

Then comes the big question...

Stiches or wound vac...and the answer is...

STITCHES! Dr. G said he felt like the muscle closed well with no tension or stress and that he thinks she's heal just fine. Since he pretty much called her first wound dehissing, we'll take him at his word for this better news. After surgery they brought Molly up to the PICU where they have cardiac post-op nurses who know all the details about what she'll need.

They pulled her breathing tube out early this morning around 2am so she's breathing on her own. Today they are also supposed to remove the central line, art line, chest tube and foley. Which means she'll only have one IV line left (in her head, course. might as well take advantage of the fact that her hair hasn't grown back yet)! Woo! We're hoping all goes to plan. We're waiting now for rounds so we can see when she can start eating again. She has already started eating her hands, so we're sure she's starving. Otherwise she is in a lot of pain, which is to be expected but still sad to watch. She'll wake up screaming. Fortunately the nurses are quick with the fentanil (a strong pain narcotic that makes her quite loopy) and she goes right back to sleep. If it were up to us, we would want her to sleep for the next week and wake up with much less pain. It will definitely be a long recovery for her, but we're thankful we get to be on that road!

They're talking that if she continues to improve as she is, we'll be out of here in a few days. Keep your fingers crossed for her. Thanks for all the love and wishes. It means so much!

We hate the smell of medicine in the morning

We just checked into UVA and are now in the waiting game for Molly's surgery. She is the second case of the day so the exact timing will depend on how well the first case goes. We were told around noon, so we'll see. We had to stop feeding her at 5am this morning and so far she is doing ok. We're expecting crankytown anytime now.

Yesterday we were here for all of Molly's pre-op tests. She had an echo, pacer interrogation, blood draws and x-ray. All this was just to make sure she is a-ok for surgery. Luckily, Molly is old hat at these and sailed through it all (except the blood draws of course). She slept through the entire pacer interrogation and even gave the x-ray tech a smile. We almost had a big snafu when I casually asked if it was ok that she had thursh. Rebecca's, the NP, eyes got real big and said it was not ok and that it would probably delay surgery. After quickly consulting the surgeon, the EP and someone in infectious diseases, she was cleared for surgery because it is a minor case and they will not need to be entering her bloodstream during the surgery for any reason. They are giving her a super-powerful anti-fingal to knock it out just in case. Always some drama when Molly is involved, as usual.

We met with the surgeon and found out the details of what is going to happen. Here goes:

She'll be put to sleep with a mask of general anesthesia before they do anything else to her. Phew. Once she is knocked out they will intubate her (just to be safe that she maintains an open airway) and put in the iv's that will keep her under during the surgery. Dr Gangemi, the surgeon, will make two new incisions—one just under her armpit to about the bottom of her ribcage and a second horizontal on her stomach just below the last incision from her first surgery. The side incision is so he can easily reach her left ventricle (which is more underneath the heart and so harder to access). Once in there he will attach the new lead to the outside of her heart. The second incision is so he can replace the pacemaker box itself. New kind of pacemaker requires a new box to run it. He feels strongly about not reopening her first incision because of how hard it was to get it to heal in the first place. He just didn't even want to mess with it. During the surgery, Molly's heart will continue beating on it's own (making it a much less complicated surgery). When he switches out the pacer box, they will stop the one pacer and connect alligator clips to her lead wires to pace her temporarily while he works at hooking up the new box. Yes, alligator clips. Like a car battery.

Speaking of her tragically non-healing first wound that required us to be here 7 weeks longer than expected...one thing we will not know until surgery is over is whether the surgeon will stitch her up or put on a wound vac from the start. He needs to see how her skin has matured in order to make the decision. If she is able to be stitched up, we're looking at a 2-3 day recovery and checkout. Let me repeat that: TWO TO THREE DAYS. It's almost a bit too good to be true so we're not banking on that option. If he puts the wound vac on from the get-go, we're looking at 2-3 weeks recovery. And this is all dependent on things going smoothly with no complications. And Molly has been the queen of complications. So we're hopeful that this could be her time to finally have something go her way, but also know that something could always come up.

The surgery to put in the bi-ventricular pacemaker is step one. Step two is seeing if it makes any difference with her heart function (the cardiomyopathy). We have a 60-80% chance of it improving her function. The docs say that we could see a change in as little as 6 weeks and as long as 1 year. Right now, we're thinking short term...like hoping they can take Molly quickly and this first surgery doesn't go long. Baby steps...

Caught in UVAs gravitational pull

We're home again and here are the few things we've learned from our four-day jaunt to UVA:

1) We continue our record of not being able to come home from the hospital in a regularly scheduled fashion. Fortunately this time it was just one day extra.

2) Molly likes enalpril now. Phew. She did great with her new medication, though she gave the nurses a horrible time at getting her blood pressure. They can put a pacemaker in a 4 1/2 pound baby, but they can't make a blood pressure cuff that works well. Go figure.

3) Molly actually likes the hospital! No really. I'm almost a bit offended because she was insanely happy the entire time. In fact, she started laughing while we were there. It's more of a partial cackle than a guffaw, but still cute. She smiled huge at every nurse and doctor who came in. I think she likes the attention. Uh oh. That plus this trip was waaaaaaay easier on her because they didn't have to put an iv in her and the thermometers they have in this part of the hospital give a reading in 3 seconds versus the 2 minute ones in the NICU.

4) We still love our UVA family. Those who came by for a visit (word spreads fast when you're back :)— Dr Mike (turns out he rotated to the floor where we were!), Aunt Pam (pronounced Pay-yam), Katie and Laura (Gretchen and Sam's mommy's respectively and fellow pumpers), and of course the cardiac team including my comedy partner Rebecca, Dr Snyder and GMac, our EP. I also ran into tons of others around the hospital that were great to catch up with.

5) Sleeping in a hospital "bed" (aka a chair that reclines) is, sadly, better than having to leave your child at night. We're glad we graduated to the big girl pediatric ward. However, having to share a room stinks. Turns out to infants in one room equals a lot of crying. We shared with Laura, a 2 month old twice the size of Molly that was having unexplained seizures. By day four, her and Molly were actually waking up and feeding at the exact same times all night. Which was weird, but convenient. I also felt like the wise old lady of the hospital because I got to share tons of things with Laura's parents.

6) Lastly, it's that this won't be our last extended stay at UVA. The doctors do want to go ahead with the bi-ventricular pacemaker surgery. They think it's the best chance she has at saving her heart. Dr MacDaniel (aka GMac) told us that there was a 60-80% chance of success to resolve the cardiomyopathy with this new kind of pacemaker. We're waiting for a meeting with the surgeon to discuss timing and procedure, but they want to do it as soon as possible. Everyone is mostly concerned with her ability to heal again (since last time her inability to heal kept us there about 8 weeks longer than we wanted). Because her skin may still be very fragile, they're discussing doing a would vac from the start this time. Meaning she won't be stitched up after surgery so she can't split them again and cause more damage. If they do proceed with this, it means we're looking at about 2-3 weeks recovery with no complications (and we all know how complicated Molly can be). Brian and I are convinced that this new pacemaker surgery is the way to go and we're hoping this time little Molly has a smoother ride. We just can't wait to be on the other side of all this and see her finally improving.

No pics this time because I forgot the camera. I do have cute ones on my camera phone if anyone is interested in getting a Molly text. :) Thanks to all for the continuing love and support!

Deja vUVA continues.

So it turns out being a NICU patient is actually like living at the Ritz. Because being on the floor is something quite different. First off, we share a room. There is nothing like being paranoid about your baby disrupting others at the same time you are being disrupted by your neighbor's baby. Next there are the horrible "beds" which is a chair that reclines. And the nurses, while nice, aren't really around much.

So right to it...they started Molly on a very low dose of enalipril last night and monitored her blood pressure every fifteen minutes for a few hours. So far so good. So this morning they gave her a half dose of the drug and they will be taking her blood pressure in about 10 minutes to make sure she is okay for her next dose tonight. Side note: at a minimum it takes about 8 tries to get a blood pressure. I told the doctor that if they are able to put a pacemaker in a 4 1/2 baby on day one of life, they should get an effective way of getting a dang blood pressure.

So now we're looking at a Friday release to give the docs enough time to step her up to the full dose of the medication. So far so good, but Molly has found ways to crate drama in the past so our breath is still held.

Another, larger, development is that the docs are now convinced that they need to give Molly a new kind of pacemaker. They think this will help solve the cardiomyopathy. The new pacemaker is called a bi-ventricular and would basically mean it would be what she has now except another lead would be placed on her left ventricle so both ventricles would be stimulated at the same time. They think the dissyncrony of her current pacer is causing her left ventricle to fail.

So this means another surgery and another extended stay at UVA. We're not sure of the details yet as we are meeting with the cardiologist, surgeon and EP about it all either tomorrow or Friday. We do know that they want it to happen sometime in June, though. Not what we wanted to hear, for sure.

More to come...

Deja vUVA

We are off tomorrow for a three-day spa vacation at the destination of our choice. Sadly, UVA called and they need us to come there instead.

Molly is being admitted so they can put her on a new medication. Actually it's an old medication that they tried to put her on in the beginning of all this mess, but her blood pressure dropped really low. They think that now she's old enough and her kidney's have matured enough that they want to give it another go! The medicine is enalipril. It is an ace inhibitor, which some of you with high blood pressure may also be on. For those of you keeping track, this will be her third daily medication and her second to help blood pressure (her first being carvedilol, a beta blocker).

Why does she need blood pressure medication, you ask? Good question. We knew you were smart. Well they have her on these medications not to help her heart get better, but to give it a bit of a break so it can get better itself (called remodeling). The blood pressure meds keep it so her heart doesn't have to work as hard and the third med keeps any excess fluid from building up around it. All of this is to try to get her cardiomyopathy (aka heart failure) to resolve itself. Which, surprisingly, does happen. BUT it also doesn't happen. So overall we're still in wait and see mode. Why did they decide to put her on these meds now?

[flashback] picturing Wayne saying "doodoodoo, doodoodoo"
Two Fridays ago we made a day trip to UVA so we could get her blood clot ultrasound. Well good news...it was GONE! So we got to discontinue those crappy crap injections. WOO. Finally I don't have to feel like someone is going to call child protection services on me when I take her out with her legs exposed for all to see the tons of needle pricks marks. So one thing off the list. Slow and steady seems to be what the universe is trying to teach me (Brian learned that one already, I'm sure).

While there, cardiology decided to do a bunch of bloodwork to check on a few things. 1) her inflammation levels to determine if they want to do another round of ivig and 2) her BNP, which is a measure of heart failure, and 3) other things I don't remember. Molly, as usual, was hoarding her blood and her screaming traumatized the nurse drawing her blood enough to come back with a present for Molly (a lovely outfit).

All the bloodwork came back fine (yay no ivig), except the BNP. Her number went from 58 to 2000. As far as I have learned, BNP is something that the body produces more of when the heart is in more failure. It is an indication, but by far not the only factor in determining how bad her situation is. Still, it was troubling so the docs decided to put her on all the meds that is protocol in these situations. Again, they won't fix anything. Just give her the chance to fix it herself. The doc also said BNP can go up and down and up and down so she's being retested in another few weeks (or maybe while we're in the hospital). I also know that Molly had a virus when the blood was drawn and I'm going to ask if that could have affected her number. Straws firmly grasped.

The good news about this trip is that I (possibly we) can stay overnight in the room with Molly. I was told there would be a cot or "chair that turned into a bed". Preventative ibuprofin here I (possibly we) come.

I'll post how it all goes on the flip side...

Reunion

Last Friday we made our triumphant return to UVA for some follow-up appointments. It's amazing how the 9 (very long feeling at the time) weeks we were there all of a sudden felt like 3 seconds of time.

So we followed up with hematology about the blood clot in her leg from the first PICC line debacle. We've been giving her Lovanox shots twice a day to prevent it from spreading. I was hoping to convince them to stop the shots, but they said no. Boo! So we have to give her the shots for another month. We go back on May 19 to get an ultrasound on the clot and more blood levels on various things I don't really understand. The bottom line is, May 19 should be it for the shots. Yay.

They had to take blood from her while we were there and it's still just as hard as ever. After a failed attempt on her arm, the nurse told us to tell anyone trying to get blood from Molly to go straight for the head. So... now you know.

After hemo, we then met with cardiology to get her pacer checked. This is pretty much the only time anyone at UVA said all her tests came back "perfect." Woo hoo. Her pacer is functioning great. They know this because she has a little computer inside of her that collects information n her. To read the information off it, they put a huge magnet up next to her chest. Wireless technology at it's best! In fact, once we get over the initial year of monthly pacer checks, we will get to check her pacer over the phone! We just call a number and it can read her stats right there. Weird.

The rest of our time was spent visiting with nurses, doctors, moms and others that we knew. It was an amazing feeling to be able to be with everyone knowing that we got to go home at the end of the day.

On a related note, Molly is still happy at home. She loves baths, being in her car seat and smiling. She hates  her shots, being left alone and gas. She also has been noticing lately that there are two similarly-sized fuzzy things living among us. Oh and also, somehow, every song now has "Molly" somewhere in the lyrics.

Follow up cardio appt next week for another echo to check on the heart function.

Molly phase deux

Well we are home! And it feels wonderful to focus on "normal" baby things like lack of sleep and if Molly is hungry or gassy (both usually). We'll keep posting Molly's medical updates, since we're still dealing with her cardiomyopathy.

Leaving UVA was bittersweet for sure. We got to stay in the room-in room the night before. At 6am the new resident doc (who replaced our beloved Dr Mike three days before) comes into the room to check in on Molly for the final day of rounds. I remember her saying something about how she lost weight overnight (50 grams, which is tiny) and that maybe they would hold our discharge until later in the day to see if she gained weight. I almost threw her out of the room and grabbed Molly and ran for it. No one who has only been there for three days was going to keep us from leaving! Fortunately, the attending physician dismissed what she said and sent us on our way.

That morning was a whirlwind of doctors, nurses and goodbyes. These people became our family over the last 9 weeks and, in a way, it was sad and scary to leave that.

Since then we've had 2 pediatrician appointments (she has gained 6 ounces and is a whopping 7 lbs now) and one pediatric cardiology appointment. Dr Albrecht (the ped card) did an ultrasound and said he thought her cardiomyopathy (the heart squeezing issue) looked improved. Yay! It's nowhere near normal heart function, but improvement is improvement. We know that if the immunoglobulin treatment she got does work, then it will take months. Hopefully the improvement he sees will keep going.

This Friday we go back to UVA for a hematology (to check on the blood clot in her  leg) and cardiology appointment (to check her pacemaker and heart function). My hope is that hemo will say we no longer have to give her the shots. It is the saddest thing ever to have to give her shots twice a day. Brian and I find ourselves stalling often. "Oh but she's so happy." "Oh but she's sleeping." "Oh she just smiled at me. I can't give her a shot right after she smiled at me."

So wish us luck!

Some pictures from our departure...

The last day of rounds. This was my 9am meeting every morning. You can see Dr Jess, Dr Paget-Brown and Dr Mike.

Our last moments in the NICU.

Rebecca, our amazing cardiac nurse practitioner.

In the car no the way home!!

Molly's first bath with the lovely Gayle. She wasn't allowed to have a bath before because of all her tubes. She only half liked it.

Molly pondering what life will be like out of the NICU.

First moments at home and Wedge approves.

In her jaunty going-home outfit courtesy of Aunt Hilary.

Saying goodbye to Dr Mike, who rotated out of the NICU two days before our release.

Loving her newest blanket knit by "Becca"

Sleeping on the ride home.

From January 31 to March 31

WE ARE GOING HOME TOMORROW!!!!

Things we are going to NOT miss:
1) Washing our dry, cracked hands before going into the NICU each time.
2) The 1 1/4 hour of I64 keeping us apart.
3) Saying goodnight to Molly at 7pm every day.
4) Sharing a bathroom with strangers.
5) Wearing the same 5 outfits.
6) Navigating the tubes and wires attached to Molly when we pick her up.
7) Cafeteria food.
8) All the beeping machines.

Things we WILL miss:
1) The people. You live somewhere for 9 weeks and it's hard not to form friendships.
2) Twenty-four hour expert babysitting.
3) Not having to pay for diapers, wipes, creams, meds, pacifiers...
4) Morning rounds. Being kept up to date in explicit medical detail about your child is quite fascinating.
5) Cable TV in the pump room. Christine's 20 minutes of Bravo/HGTV a few times a day.
6) Not seeing a medical bill yet...

Thanks so much for all your support through this and for understanding that we had to disappear for a bit to focus on getting Miss Molly home. We can't wait to get back to life and have you all meet her.