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.

The force is strong in this one.

Well the 24 hour test was passed with flying colors! Molly successfully kept us awake all night to prove that she is, in fact, a normal baby. Molly woke us up every few hours of so to eat, but when she wasn't waking up between those stretches we (ok, Christine) woke up wondering if she would wake up.  I reverted to the over-achiever who never failed a test. My guess is I'll get over that pretty quickly once we get home.

The doctors seemed pretty surprised, but happy. And it was so awesome to finally spend some family time all together. She also got her first glimpse of sunlight (she didn't seem to notice a difference between that and the florescents). All in all a lovely treat after 8 weeks of our family being split up.

So you'd think we could go home now, wouldn't you? Well no. NOW they want to watch her for the next few days to make sure she gains weight. Dr Vergalas (ped card) actually said to me today, "You've been here 8 weeks, what's a few more days?" Even though I really like him, I almost punched him right then and there. You try leaving behind your entire life for eight weeks to only be with your infant for part of the day, then ask that question again.

But the good news is that Molly was weighed tonight and gained 45 grams (a lot!). So tomorrow I'll start back up on bugging them about a release date. It's gotten to the point where nurses we haven't even had are coming up to me asking why they won't let us leave. One nurse today gave the cardiologist a hard time and told him he should just let us leave. Another said they were all thinking of us and hoping we could go home soon. So sweet. We can't say enough how grateful we are that nurses exist. To work so hard at taking care of other people is just so amazing. One made Molly a few hats. Another bought her some outfits and toys. And another just made her a rosary (which is ironic because she lives in a "spiritual house"). All amazing women (of the 150 nurses in the NICU, only one is male) making sure our baby comes home safe and sound. Molly has lots of Aunties for sure.

So the end is near. How near, we do not know yet.

On another note, we appreciate more than you'll know all of the thoughts and prayers going towards us and Molly's recovery. Our "NICU mom" friend Katie has a beautiful set of twin girls born at 24 weeks. After 8 weeks, Ella has taken a serious turn for the worse. If you could direct any prayers/thoughts/energy towards her it would be much needed. The NICU is a place where bad things happen regularly, but also where these little babies continue to surprise doctos with their resilience.

More pics to come.

24 Hours of Molly

The hospital is letting us spend 24 hours with Molly in a "sleep-in" room. This is their version of high-stakes testing... if she feeds well without a feeding tube for this 24 hour block of time (and continues to gain weight) then we are one step closer to graduating from the NICU. In other words, it's our first night with our baby!

Otherwise, this week has primarily been about fighting with the doctors regarding the (un)reality of a strict 3 hour feeding schedule for a breast fed baby with a heart condition. The doctor's were finally convinced (or decided to humor us), thus tonight's slumber party.

Molly has pulled out her own feeding tube twice in two days, clearly indicating that she wants nothing more to do with that nonsense. Combined with sabotaging her PICC and central lines, she is clearly ready to come home. Not to tell tales out of school, but we are hoping to be able to come home next week if all continues to go well. And I have just knocked on all the wood near me.

Molly has a new collection of knit clothing thanks to Rebecca and her lovely visit. Pictures to come soon.

And on the 7th week, the doctors let Molly rest

Today was another exciting (aka stressful) day, but it ended on an up note. woo.

At around 9am, the alarms started going off on Molly's iv meds that there was "pressure increasing." Which means there is either a tube clamped off or a clot in her PICC line. Knowing Molly, guess which one it was? Yes. After a measly 4 days, her PICC line started clotting. After the nurse practitioner tried for about 2 hours to unclot the line with medication, it was pulled. So let's review: first PICC line created a clot in her vein, second PICC line "migrated" to an unknown location, third through ninth PICC lines could not get in because her veins were too curled up, first central line came dislodged and the 10th PICC line now clotted in the line. Keep in mind, PICC and central lines are supposed to last for MONTHS. Clearly Molly didn't get that memo.

So the dilemma: she has two more days of antibiotics (after being on them for 6 weeks) and about another week of weaning her off the Milrinone. Do they a) try for another PICC line, b) try for regular iv lines or c) discontinue the meds early. The answer is...

C!! Of course they tried for the iv lines 6 more times with three different nurses before making this decision, but it was made nonetheless. Our favorite NP Rebecca made a call to cardiology to see if they can cut off her iv meds and they actually agreed. Ending the iv meds early isn't desirable, but also not dangerous since she has started to go on the oral meds. Stacy Applegate (the cardiology fellow) looked at me and said, "Well, I guess Molly is telling us she's done." And we're glad they listened.

After it was all over, it was strange to be able to pick her up without a bunch of tubes attached to her. I started wondering today if she thinks the tubes that have been with her for so long are actually a part of her and will she be confused when they're gone. But so far, so good. When we told our favorite night nurse Pam (who has been on for the last 8 nights in a row!) that she got off all her meds, she started crying out of happiness. Nurses are amazing people. Especially Pam. And Gayle. And Esther. And Rebecca. And...

Haven't We Seen This Movie Before?

Molly's central line, because it's a surgical procedure, was meant as a last point of entry when I.V.s and PICC lines don't work. They are more permanent and reliable. Is anyone surprised at this point that Molly's failed? At about mid-week, we noticed some leakage and bleeding from the central line, but they weren't too worried about it.

Then on Thursday, they realized that none of the fluids (including some of her medications) were going in any longer. Cue the Keystone Cops music--and here, we, go: Molly got a new peripheral I.V. (traditional) in her left hand to get her meds started again, they called in their ace PICC line nurse, Jen Fox, to get a new line in her scalp (success!), and the surgical team came down to remove the central line (which had dislodged itself to the point where they could just pluck it out). Thank goodness they were able to get the PICC line in, b/c if not (or if it fails) then they would have had to reconstruct her central line which would be a full on OR procedure with anesthesia and stress and paperwork and so on.

So it was a bit stressful when on Friday they told us that the PICC line might be clotting up. Again. Fortunately, it was a bit of a false alarm and the PICC is still operational.

In the midst of this recurring PICC/IV/Central Line debacle, the cardiologists were also starting the process of transferring Molly off of her IV heart medication (Milrinone) and onto oral equivalents. They gave her a test dose of an Ace Inhibitor. She had a very strong reaction to it (it is supposed to keep her blood pressure low, but her blood pressure dropped too low) and they discontinued the treatment. Next up, they are trying a Beta Blocker. They started the test dose yesterday, and so far her blood pressure has remained where it should. They will now begin to lower her Milrinone dose and increase that of her Beta Blocker. If all goes well, we will have cleared one of the major hurdles that are preventing us from going home. Hooray!

When the Central Line was first giving us issues (leaking and such) Molly had started becoming extremely irritable, which is unusual for her. Now that the line is out, she seems to be back to her old, calm self (unless you try to put a thermometer under her arm; then watch out!). She is such a trooper. Grandma Coffey, Aunt Lauren, Aunt Hannah and Aunt Taneisha all came down this week (fortunately before this week's craziness) to visit.

More pics!

More awake everyday!

After her baths, the mohawk really turns rocker chick.

Another in a series of cute hand positions while sleeping (with grandpa Dayman).

ANOTHER in a series of cute hand positions while sleeping (with another hat nurse naomi knitter for her).

With Aunt Lauren

With Aunt Taneisha (Lauren's friend who is going to marry Dr Mike, Molly's resident doc).

Grandma trying to wake Molly up to play.

A bonnie lass on St Patrick's Day.

I heart cardiology

Today the cardiologists finally pulled the trigger and began transitioning Molly from the iv meds she's on to an oral form of it. If all goes to plan, this should take about 5ish days (so Monday). Also on Thursday, she is done with the 6 week course of antibiotics. And her wound is healed enough.

SO the only thing we still need to work on is feeding. The docs need to believe she will eat and grow when we take her home. She hasn't been doing so well in that category. But I'm hoping it will change once they let me switch her from the hospital's "eat every three hours" philosophy to a more eat on demand sort of thing.

If all falls into place like we hope, we could be going home end of next week. Of course we'll be visiting the hospital often even after we go home because her heart conditioned needs to be monitored. But home will be great.

Brian's mom, Hannah, Lauren and Lauren's friend Taneisha visited the last few days. It was lovely to have them here to make the days more interesting.

Molly has started to wake up and have more opinions lately. Which means she's also been more cranky lately. I would be too if I had to be stuck in a hospital since birth where they poke, prod and stick me all the time. Our poor baby. We can't wait until she doesn't even remember all the lights, alarms, beeps, tubes, etc that she has to endure...

By the numbers

Number of days we've been at UVA: 45
Number of days since Molly was born: 42
Number of days Molly has spent outside: 0
Number of weeks Brian took off before having to go back to work: 3
Number of days per week Christine and Brian see each other now: 2
Number of days Christine has been home since January 28: 1
Number of doctors actively treating Molly: 10*
Number of nurses: countless**
Number of other hospital helpers who work with Molly: 4 ***
Number of hours Christine spends per day in the NICU: 11 (8:30am to 7:30pm with a lunch break)
Number of milliliters Molly eats per feeding: 50
Number of times Molly eats per day: 8
Number of times you are required to Purell before touching Molly: every
Molly's room number: D22
Number of days left before iv antibiotics are done: 11
Number of days until we're trying to get the doctors to let us leave: 11
Number of days until the doctors let us leave: ??


* NICU attending (changes bi-weekly who this is), 2 NICU residents (Dr Jessica and Dr Mike), 3 pediatric cardiologists (Dr Schneider, Dr Mathern and Dr Jayakumar, 2 pediatric cardiology fellows (Dr Applewhite & ?), surgeon (Dr Gangemi), surgeon's nurse practitioner (Rebecca)

** Our favorites are Esther (she sings songs about tutus when Molly is cranky and that her psychic friend told her Molly would get through this ok), Gayle (she talks to Molly about everything she is doing), Ruth (helped her through the PICC line debacle), Pam (pronounced Pay-yam, very Southern and likes to rearrange Molly's space), Deb (likes talking about her sons), Stacey (power feeder), Terri (tells it like it is), Naomi (knits hats), Donna (gives chocolate), Cathy (likes Molly to be very clean)

*** Occupational therapist (Wally- working on stretching her thumbs), physical therapist (Nancy- works on neck muscle development), "baby teacher" (Norma- says Molly has good habituation habits), social worker (CiCi- gives us food vouchers and ways to find money)

Quiet time in the NICU

The rest of our week has been pretty calm.

Molly's wound vac was changed again on Thursday and we're looking at either Monday or Thursday that it will be gone for good! Yay. One less tube coming from our baby. They also did another echo on Friday and still found her heart squeezing to be stable (no worse, no better).

We did some research on heart block and cardiomyopathy and found some interesting bits of info...

From the doc at NYU who has been studying heart block for decades (Dr Jill Buyon, who is pretty much the leading American researcher on this condition): I spoke with her on the phone and she said they see this condition often in babies who are paced. She sees a link between this and the kind of pacemaker Molly has. Hers is connected to her right atrium and right ventricle only. In her research she said many children with this problem have to switch to a bi-ventricular pacer to resolve a dissynchrony in the electrical impulse from the right vent (where the lead is) to her left vent. A normal heart has an impulse coming from both at the same time. A paced heart like Molly's has to wait for the right to "talk to" the left.

I also spoke with a mom whose son went through the same thing. She said as far as she was told, the docs try the drugs first (which is what our docs are doing) and the new pacer second. We spoke with the cardiologists today and asked how long they anticipated her being on the drugs before they wanted to see improvement. He said "months." If it doesn't improve in "months" we'll be talking about next steps.

We also asked about why they don't want to replace her pacer now. Basically, they're not convinced it's the problem and it would be a big deal to replace her pacer if it wasn't. She's not big enough yet to really handle the bigger pacer AND she's already having huge problems healing from the first surgery anyway. So why put her through that again if they don't have to?

So hopefully the drugs will start to show improvement. Or they'll at least get her to an age and size where the pacer can be replaced. We'll see.

BUT with all this we are starting to see signs of them being able to let us go home. They're starting to talk about moving her from the Milrinone (an iv drip) to an oral form of medication. Once they do this, she can continue to be followed up on an outpatient basis. The other thing she has to start doing is feeding on her own and continuing to grow from that feeding. Currently we're trying to get her to take bottles when I'm not nursing so we can prove she no longer needs her feeding tube. She's been improving but isn't quite there yet.

Our goal is to get this all together by the time she is done with her 6 week course of antibiotics (given iv), which is not this Thursday but next (March 24). Wouldn't that be nice?

Echo, echo, echo.

So far so good this week. I know it's only Tuesday, but we'll take what we can get. I think all the doctors and nurses are scared of having to prick her for anything (ivs, blood draws, etc) because of how much of a pain I was to them last week. So they've left her alone. OK, so it could also just be a coincidence.

They redid the echo on her heart yesterday and found no improvement in her heart function (the squeezing). BUT they also found it hasn't gotten worse. So they gave her another round of immunoglobulin (also called ivig) treatment. Apparently this kind of treatment can take a while and may need to be repeated multiple times before it helps. Hopefully this causes an uptick in her echo. One of the frustrating things about all this is that the cardiologists have made it clear that the echo is a horrible way of determining if heart squeezing is ok. They told us they look at the before and after pics and make an educated guess. Woo. Sometimes I just wish there was a machine that gave a thumbs up or thumbs down so we had a clearer status.

Our NP Rebecca also came by again yesterday to change Molly's wound vac. She said her wound was "superficial" at this point, which is awesome. It's also amazing what they consider superficial because her chest still has a big gaping hole in it from what I saw. She's keeping the vac on the wound for now just because we're stuck here anyway and might as well keep it on as long as possible.

The depressing part is that she said she'd send us home now with how good it looks. But we're here until the squeezing problem improves. Hopefully this round of ivig does something.

Otherwise Molly's energy is improving. She's gaining weight, working on getting all her food by mouth and is awake for longer these days.

And some more recent pics:

A better shot of her "NICU Special" haircut. Yes, it's this way on both sides.

Someone's hungry.

In the hat that nurse Naomi knit her. Ridiculous.

Another in a series of cute hand placements while sleeping.

An xray showing her pacemaker. The large circular piece is the battery/computer. The two leads going off of it go up to her heart where the 4 circles are the leads screwed (yes, screwed) into her heart. The lead wires are so long so she can grow taller without it having to be replaced. The other wires are just her monitors that she had on her chest when the xray was taken.

Big eyes

She's so cute when she's awake. Comically large crib photo still to come...

This is from last week, but she is still cute.

Down, down, down, up.

So the rest of this week, in a word, sucked. Her heart is in the same shape as it was before so nothing new there. They will be doing another echo on Wednesday to see if there is any improvement (I'll take a 'skoch'). Her wound will be looked at again tomorrow when the nurse practitioner (Rebecca) changes her dressing.

The week sucked because her PICC line gave out. Her first PICC line had to be removed because she got a clot (which led to a host of genetic tests on whether she had a clotting disorder...no she doesn't). The second PICC line "migrated to an unknown location" so it had to be removed. So they tried to put in a third PICC line. It didn't work. So they tried again. And again. And again. And again. And again. And again. Seven times in two days. Now our poor baby has even more of a shaved head and 14 new prick holes in her head. It was really hard to endure. Her and us. Poor thing has been exhausted and freaks out when they swab her with alcohol because she knows what's coming. Finally they decided PICC lines were not her thing. So they put in a central line, which is a small surgical procedure where they put an iv directly into her arterial vein. Fortunately they sedated her so she didn't feel a thing. And it's done.

But then she got a low grade fever. So they had to collect blood to test for infection. More needles. I stayed with her this time (I'm not allowed to be there when they do the PICC or central line procedures) and it took FIVE times to get blood out. The reason is because she's been drawn blood on so much that her veins are shot. I had to leave after the third attempt because she was a crying mess and so was I. They stopped after 5 attempts but still didn't get as much blood as the docs wanted. They sent it down to the lab anyway, hoping it was enough. Well...the blood clotted on the way down and was unusable. So they had to do it again.

Finally they got enough. So far the blood culture has been negative. Fingers crossed it stays that way.

They also did a CBC which showed her hemocrit (red blood cells) were 24% when they should be more around 40%. Basically this is because they have drawn so much blood that they made her severely anemic. Babies don't make blood for a few months so all the bloos they were drawing was not replaced. So last night they did a blood transfusion. Thankfully. She has been lethargic for the last three days and finally she is more back to normal today.

And it was just in time for Aunt Jess and Uncle Jim to meet her. They got nice Molly awake time. Her fever is down. No infection has shown on the cultures yet. And she got to be held for hours today by Jim and Jess. So we ended the week on a good note.

But I hope this week never has to happen again. I'm over it and told the docs to stop torturing our child. The nurses have been so great through all of this with sympathy and extra loving to Molly. The charge nurse Naomi knitted her a lovely hat because she knew I'd be upset about their shaving of her head again. And another nurse, Mary, gave her new look a cute accessory (pic below).

Are we home yet?

"I'm watching you, monkey." says Molly with her comically small bow.

Molly's Menagerie

She has the cutest hands when she sleeps.

With Aunt Jess

With Uncle Jim

With grandma

With Aunt Hannah

Mostly good! We'll take it.

It was a busy day today and like I said, mostly good. So here we go:

1) The big news first: they redid her echo and her heart squeezing is "not worse and even a tad better." We'll take a tad better any day. Last time it was a "smidge" better. A tad, apparently, is better than a smidge. They are still holding off on the steroids because the surgeon wants her wound to heal more. They are going to do another round of the immunoglobulin treatment next week. So hopefully it continues to get better! I'll have to ask the cardiologists what's better than a "tad" so I can root for that next time.

2) Her energy and eating has been pretty down, something the Cards link to her heart function being poor. So they are encouraged when she eats well and doesn't sleep all day. So today was a good day for that. At her 9am feeding she took the boob exclusively without any supplement in her feeding tube (which is a first!) and her 3pm feeding (which I wasn't at) she took an entire bottle (called PO in the NICU world), which she's also never done before. It's amazing that with her intricate heart issues, it's simple things like eating that the specialists look to to see if she's doing well.

3) She also upgraded to another new bed. I call it her "comically large bed" because I can crawl into it with her if I wanted to. So picture a crib. Now picture it comically large and voila. That is what she's now sleeping in. I'll take pictures tomorrow. Today's picture features her old crib.

4) The only crappy news of the day is that they have to remove her PICC line and put in a new one. The line migrated away from where it should be and they don't really know where it is (turns out x-rays are bad at giving details and they don't want to feed her dye just to find it). So they're removing it just to be safe and putting in another one. It's quite a procedure of inserting a thin line through her vein and into the spot right before her aorta, so I'm pretty sad she has to go through it for the third time. I have to keep reminding myself that she won't remember this when she grows up.

Otherwise things are going well. Molly got in some quality Grandma/Aunt Hannah holding time today. Her favorite pastime is being held by people, so it was win-win for all.

Pic of the day: One of my favorite night nurses, Ruth, came up with this arrangement so she felt all snuggled in at night. Molly likes boundaries and the boppy pillow provides just that.

Molly's crib version 2.0: the version after the sad plank-looking bed
and before the comically large crib (this one, but way bigger).