We have a 4 week old!

Well, sort of. They won't let us take her yet, but she'll be fully ours eventually. I put the docs on notice today that if we're not out of here in two weeks, they'll be hell to pay. They laughed. Clearly, they don't know me very well.

Today Molly's wound vac dressing was changed again. Rebecca (the surgeon's nurse practitioner who changes it) said it was better, but I could tell she was hoping it would be farther along so she could tell the cardiologists to start the steroids for her heart squeezing problem. Catch 22: steroids help heart squeezing problems AND inhibit wound healing. We'll find out tomorrow when they're going to start the steroids.

In another hilarious(ly unfunny) NICU move, in addition to drawing blood from Molly often for various things, they actually started drawing my blood too. Babies don't really start making their own blood for a few months. When you draw too much blood on a baby you need to transfuse, which they don't want to do on Molly. So now they're testing me for things. If I don't have them, she doesn't have them.

Grandma Coffey and Aunt Hannah came today as well and will be here until Thursday. Molly is looking forward to some uninterrupted sleeping time in their arms.

Also, got the CUTEST tea/baby gift basket from Taneisha! Molly can't wait to partake.

Another pic. You still can't see her sad new mohawk haircut (they had to shave both sides of her head for ivs). It's probably because I haven't accepted it yet. The nurses saved the hair for me because they knew I would cry that it was gone.

Caught while sleeping. I vow that tube will be gone soon!

- C

Another quiet day

Another lovely day of just holding, sleeping and eating. So here are some pics. Brian goes back to RVA tomorrow to work (boo), but mama Coffey and Aunt Hannah come to help out. The last time they saw Molly, she was still intubated so they couldn't hold her. Fortunately things are different now.

Pic of the day:

Molly holds on to her new friend.

Sat Feb 26

Today was a quiet day. Yay. Weekends tend to be quieter because all the residents are gone. So lots of holding, eating and sleeping with her all day. No poking. No tests. So we consider it a good day.

Let's hope tomorrow brings the same.

- BCM

Echo update

Molly's echo showed nothing worse in the squeezing of her heart and "even a smidge improved" according to Dr. Schneider, our Pediatric Cardiologist attending. So ending the week on some optimistic news... They will begin adding steroids to her cocktail of drugs to hopefully improve even more. I think next week will be telling.

Also, Molly got moved into a crib (versus a pretty ugly slab-like surface) today. The Baby Teacher, Norma, also added a mobile, singing aquarium and mirror to the new digs. It's like she's a real baby now!

And yes, in the NICU they have a person specifically for "baby education." Molly also has an Occupational Therapist and Physical Therapist for all her developmental needs. Silver linings?

Week 4: Feb 21-25

This week we got more news about Molly's heart, which has led her to undergo more tests and treatments.

Before all that, there is some good news! Her incision from her initial pacemaker surgery is healing well and the doctor thinks the wound vac (literally a vacuum that sucks moisture from her chest to allow it to heal from the bottom up) should be off within a week. For those of you who don't know, her stitches from her surgery split because her skin was so frail, which opened up her chest. The wound vac is something they use to help these situations heal (as restitching was not an option because of her skin). It works great, but takes a lot of time. Hopefully next week she will get it off and move on to a a more normal wound dressing to allow the skin to come back together. Yay! One thing off our plate, hopefully soon. PS: the pacemaker is also working great. She went from 30 beats per minute to avg 160bpm.

So this week we also found out that Molly's left ventricle is not squeezing as much as it should. This leads to a higher heart beat because the heart is compensating for the loss of squeeze. Ironically, we went from being worried about her heart beating to slow to now worrying about her heart beating too fast. Sigh. They think this is happening because the antibodies that caused her condition in the first place (passed to her from me because of my lupus) are still causing problems. Babies keep their mom's immunity until about 3-4 months of life, when they develop their own (hopefully much less crappy) immunity.

So after various tests, the docs have put her on a drug called Milrinone to help increase the squeeze of her heart (yes, there is a drug just for that). They have also given her an immunoglobulin treatment, which has been shown to help "distract" the immune system from attacking itself by allowing it to attack the immunoglobulin. Thus allowing her heart to go back to normal. It was a one-time infusion, but may need to be repeated multiple times depending on her response. This was given on Wednesday. So far the docs have noticed her heart rate going down slightly, which is positive. The heart rate going down is the first sign that her heart doesn't have to work so hard to compensate for the poor squeezing. They did an echo today to see if there actually was any change and we'll get the results later today. Fingers crossed, there is some improvement.

Molly has been a trooper through this whole ordeal. She has such a sweet disposition and really only cries when she's getting poked for iv's or has gas (who doesn't?). Otherwise she loves sleeping in people's arms as much as possible. She also (sadly) has a new haircut courtesy of the NICU team. The had to get a PICC line put into her head (basically an iv that lasts a lot longer) to get her antibiotics and they shaved both sides of her head. So she's extremely trendy with a mohawk. The nurses saved her hair for me because they knew I would cry when I saw it. Will post pics when I can.

So this was a down week for us, but hopefully will end on a good note in that Molly shows some improvement in her heart squeezing from the treatments...

Molly's Blog

Hi all,

We started this to keep everyone up to date about Molly's heart condition(s). Christine is at the hospital from 8:30 to 7:30ish every day. Sadly they don't allow cell phones or computers, which makes it difficult to keep up with the lovely calls, emails, etc you keep sending.

As a bit of background, Molly Rose Coffey was born on January 31, 2011 at 4lbs 11 oz and 18 3/4inches. She was born with a condition called Complete Heart Block, which required a pacemaker to be put in when she was a day old. She will have her pacemaker the rest of her life. Other than having a few more doctors appointments and surgeries in her life, she will be able to live a perfectly normal life (as normal as you can be with Brian and me a parents).

We've been at UVA Medical Center NICU in Charlottesville, VA since then waiting on her wound from the surgery to heal. We've been staying at the local Ronald McDonald House here who have been amazing to let us stay so long for practically no cost.

We'll post updates as regularly as possible. Thanks to everyone who calls, emails, texts, etc. It really means a lot even though we can't get back to you too often. Keep it up!

Love, BCM