New York Trip: Part 1

Our ride north was fairly uneventful. We got a fairly early start and there was almost no traffic. Unfortunately, I had to change Aerin at a rest stop because the car was too full for me to change her in there. Rest stops are very challenging to germophobes, even the cleanest ones. Here is my procedure for changing a baby in a rest stop:

1. Perform a combination of self-talk and meditation to mentally prepare myself.
2. Carry Aerin into the bathroom and locate the changing table.
3. While still holding Aerin, grab a paper towel (or a wipe from the diaper bag if they don't have paper towels) and fold down the table.
4. Clean table off with lemon-scented Clorox wipes (takes about 5). This can be somewhat difficult while holding a lively toddler, but no part of Aerin can ever come into direct contact with a public restroom surface.
5. Lay a blanket over the table. Make sure the blanket covers the entire table.
6. Lay changing pad over the blanket.
7. Change the baby. This is the easy part.
8. Pick Aerin back up.
9. Wipe the changing pad with Clorox wipes before putting it in a baggie.
10. Place the blanket in a (separate) baggie. The blanket is now dirty laundry and should remain in the baggie until it is washed.
11. Purel baby and self.
12. Leave bathroom and hand baby to husband. Refrain from kicking husband in the shins when he asks what took so long.
13. Return to bathroom and wash hands with the hottest water you can stand.
14. Purel.

We got into the city around 4:30 p.m. It was bitterly cold. Now, I went to college in New York City and lived there with Andrew for almost a year after we were married. You'd think I'd be somewhat immune to the horror many small-town Southerners feel when they first enter the city. Nope. It was much dirtier and bleaker than I remembered and much more full of crazy weirdos. It didn't help that we almost got run off the road by one of those gigantic buses (the kind that are connected in the middle by that accordion thingy). Then the C.H.U.D.s came at us. Andrew did a superb job of urban driving with little to no cussing. Aerin was unimpressed with her first view of Manhattan because she is very cool.

Grandma Rita and Grandpa Steven were waiting to greet us. To say that they were ecstatic is an understatement. Their building has a large courtyard and we were able to pull right up to the door to unload. If you've ever had to unload anything from any kind of vehicle in Manhattan, you'll know what a life-saving blessing that was. Grandma Rita took Aerin into the building's playroom while Grandpa Steven and Andrew unloaded. I supervised. The men went off to park the car while I set thing up in the apartment. Then I joined Aerin and Grandma Rita in the playroom. Aerin was having a great time. They have a lot of toys there that we don't allow at home (ones that light up and make noise). There was plenty of room for Aerin to stretch her legs after being in the car for so long. Eventually, we all went upstairs to relax and see Uncle Daniel. We had Vietnamese food for supper. Now, I love the Southland y'all, but they just don't have good Vietnamese food down here (or Chinese. Or bagels). I was able to actually sit down to eat because I didn't have to watch Aerin. It was great for everyone.

I had hoped that Aerin would be so tired that she'd go right to sleep. She only napped for about an hour in the car and she was up later than usual. Of course, Aerin had her own ideas about things and she wouldn't let me leave the room. I had put the Pack N Play next to the bed, so I just laid down. That was good enough for her to settle down, but not go to sleep. I tried to outlast her and stay up for adult family time, but I fell asleep. That was for the best, because Aerin was up at 5:00 a.m. I took her in bed with me and she slept for another hour, but we were all up after that.

Coming up in Parts 2 and 3: our trip to the Museum of Natural History (Aerin was unimpressed) and to the Metropolitan Museum of Art (Aerin was unimpressed).

New Video: Part 1

To tide you over until the NYC trip post, here is some video that I shot when we went out for Andrew's birthday on Wednesday.

New Video: Part 2

New Video: Part 3

Happy New Year!

Yes, I know we're a week in. Sorry, y'all. Here's a quick update to catch us all up.

Aerin's incision is 99% closed now. The last scab fell off last week and it looks fantastic. The outcome is really better than I ever imagined it could be. It hasn't affected Aerin as much as it has Andrew and me. She never let the hemangioma slow her down or get in her way, so she's just going about her business as usual. For me, it's a vast improvement in my quality of life. I don't have to make sure I have my tumor kit (Neosporin, Mepitel pads, gauze, tape) every time I leave the house. I can pull clothes over Aerin's head neck-first, rather than pulling the sleeve over the hemangioma first. Aerin can wear long sleeves! And footie pajamas! The footie pajamas are a huge milestone for me. I couldn't put her in them when she was an infant because the zippers wouldn't accomodate the apnea monitor cords. By the time she outgrew the monitor, the hemangioma was too big. I am so in love with footie pajamas. Not only are they adorable, but they are necessary for us because Aerin will not keep socks on her feet. It doesn't matter how cold the floor is, she just likes to be barefoot. Our entire house is hardwood, so I've got to keep her feet covered. She doesn't seem to mind the footies at all and her feet are nice and warm.

Aerin's physical issues are mostly resolved. I say mostly because a micropreemie as small as Aerin was will always have some medical issues. Although she is no longer severely immunocompromised, she will probably always be more susceptible to germs and common transmissible illnesses than a term baby. The BPD (Bronchopulmonary Dysplasia, aka lung scarring) will continue to subside as she gets older and will probably resolve itself completely by the time she's four.

Aerin does still have mouth issues, but they could be much worse. We saw our dentist, Dr. Atkins, in December for a check-up. Aerin's teeth are perfect, which is astonishing. Tooth brushing is a major issue for us and it's one that I purposely avoided until recently. It's almost impossible to safely restrain a child with Aerin's hemangioma for involuntary tooth brushing. It wasn't something I ever felt comfortable doing. Despite this, Aerin has no cavities and didn't even need a cleaning. Dr. Atkins gave her a fluoride treatment and that was that. The reason Aerin's teeth are so good is that we are very careful with her diet. We only allow milk and water (and Pedialyte when she's sick). We never give her juice and we limit sugar. Fortunately, Aerin doesn't have much of a sweet tooth anyway.

Aerin will be going to the Feeding Program at Children's Hospital next month for an evaluation. This will be a 3-hour event involving 6 specialists. It's possible that she won't qualify for the program (in that she doesn't have enough feeding issues to require therapy, not that they don't have space for her). For the past couple of weeks, she's been refusing to eat any baby food with a chunky texture. She's also been refusing regular adult food (chicken breasts, green beans, etc.). I think this might be a combination of how much easier it is for her to feed herself smoother food and how much more satisfying it feels in her mouth. She also won't let me add anything to the smooth food. If I try to put a piece of chicken in her squash, she'll suck all the squash off and spit the chicken out.

Next week, Aerin will be starting the Eema & Me (Eema is Hebrew for Mommy) program at her preschool. We'll have to see how that goes and then decide if she's ready to start preschool this year. My guess is that she is not. We both enjoy the Munchkin Minyan playgroup at our shul, but I'm curious to see how Aerin does with a longer, more structured program.

Lastly, we just got back from our very first trip to New York City (Andrew's hometown and where I went to college). I'll be posting more about it later on, but you can see the pictures here.

Staples Out

Dr. Haynes removed Aerin's staples and the top layer of stitches in his office yesterday. They had to stay in an additional week because the skin was so tight. The tightness was to be expected - Dr. Pozez only had a limited amount of skin to work with. It's really a testament to her monumental skill that she was able to close the wound without a graft. Both Dr. Oiticica and Dr. Haynes told me that they were astonished that she managed it. We're thrilled, particularly because a graft would have been quite painful and taken much longer to heal. It also would have left more scarring.

The wound is pretty gruesome. It's not like a cut or a surgical incision - it's much bigger and nowhere near as straight. It is, however, much straighter than I ever thought it could be. There's some swelling and separating, which is to be expected. New skin will grow to cover the separation. We're keeping it clean and bandaged. Thankfully, I have a lot of experience with wound care from when the hemangioma was severely ulcerated. Otherwise, we would have had to go into the office every day for dressing change. Our routine until the next visit to Dr. Haynes it to clean it with soap and warm water every day, cover it with Neosporin, and bandage it.

Aerin is not in any pain. It's hard to believe, especially when you look at the wound. She's using the arm normally and she's her usual exuberant self. We did have two incidents when she had just come home - she woke up screaming in pain. We think she probably rolled over on the arm in her sleep. We gave her Motrin and Pedialyte and she was fine within minutes.

I'll write a full account of the surgery in the next week or so. Aerin and I came home from the hospital with colds and we're both just recovering now. Here is a link to a picture of the wound 5 days post-surgery. It is very graphic and icky, so please don't look at it if you have a weak stomach. Seriously. I cannot emphasize enough how gross it is. Okay, here goes: the picture.

Home Safe

After a very, very long day and night, the entire Marx Family is home! Aerin is doing unbelievably well - you'd never know she had major surgery 2 days ago. We trying, with limited success, to keep her as still as we can.



Here are some pictures from the surgery:



This is Aerin in the PACU (Recovery). We were the only parents allowed in.







Here are Aerin and Momma in Aerin's station in the step-down unit.










Here are Aerin and Momma asleep in the crib. It was even less comfortable than it looks for Momma.







Here is the immobilizer that Nurse Joanna and I had to rig to keep Aerin from moving her arm. She still managed to pull 2 stitches, which Dr. O fixed before she was discharged.





I'll try to write a more detailed post in the next few days. Aerin is getting her staples out on Tuesday and her stitches out in 2 weeks.

The Incredible Symmetrical Baby

The surgery had barely started before it was over, and it went better than anyone had anticipated. No skin graft. No blood transfusion. She's likely to be discharged this weekend.

She spent about an hour in the Post Anesthesia Care Unit (PACU) before moving up to the PCU (i.e., "Step-down" nursery), where she's now resting and watching Peep on DVD. Her momma is holding her, which is why I have the honor of writing this post.

Surgery Tomorrow

As of right now, Aerin's surgery is on for tomorrow. She's first on the schedule, which is great. Andrew's blood is still good and made it to the hospital. We plan to spend a quiet day together.

It's raining, so that should put out any more hospital fires.

Our family has received much loving support, for which we are very grateful. Aerin will be at:

Main Hospital - 7th Floor
Virginia Commonwealth University Medical Center
1250 E. Marshall Street
Richmond, VA 23298
(804) 828-9602

Celtic Festival and Highland Games

We had fun!

Postponed

We just got the call. The surgery has been rescheduled for November 16th. That's 4 weeks from tomorrow. It's the earliest date all the surgeons can make it. So much for Thanksgiving.

New Development

There's been a surprising new development regarding Aerin's surgery.

There was a fire at the hospital today. No one was seriously injured and the backup power kicked on immediately. However, all non-emergency surgeries scheduled for today were cancelled. Dr. Haynes called me to let me know that we're basically on stand-by. Aerin's surgery could go on as scheduled or it could be postponed for two weeks. Hopefully, we'll know by tomorrow.

Loving Support

We've received many cards, emails, and phone calls from friends and family all over the country. It comforts us to know how much Aerin is loved. Many have asked about sending flowers or balloons to the hospital for Aerin. While we very much appreciate the sentiment, we would prefer for people to make a donation in Aerin's name to the March of Dimes.

We would also love for everyone who can to donate blood in honor of Aerin. She has already had 6 transfusions in her little life and she wouldn't be here without them. They've set aside 2 units of blood for her, in addition to the unit that Andrew donated to her. That's a very sobering amount. You really do give the gift of life when you donate blood. Andrew and I can never thank Aerin's donors enough.

We do understand if you really want to send something to Aerin. Here is where she'll be:

Main Hospital - 7th Floor
Virginia Commonwealth University Medical Center
1250 E. Marshall Street
Richmond, VA 23298
(804) 828-9602

Pre-Op Day:II

Pre-Op Day:I

Pre-Op went as well as could be expected.

Parking at MCV is a baffling ordeal, but we managed it. They've switched departments around, so we took a couple of detours before we found the right one. Aerin had a fantastic time waiting for our anesthesia appointment. The waiting room is more like a lobby and she ran around with glee. In typical Aerin fashion, she brought a smile to the faces of everyone who saw her. Even exhausted interns and residents couldn't resist her.

After the usual paperwork, we went into the clinic. It was just a brief physical and history, followed by blood work. I brought the medical history that I've written for Aerin and it was immensely helpful. I strongly encourage all parents to write one up for their children, even healthy ones. Aerin's is 2 pages long and includes prenatal history. It has saved me a lot of time and stress.

Having blood drawn was a bad scene. I sat in the chair and held Aerin on my lap. They can't draw blood for the hemangioma arm, so there's only 1 chance for a stick. Unfortunately, Aerin has inherited my weak, roll-y veins. The second the tech got the needle in, the vein rolled. She was a lovely and skilled lady and decided not to dig around for it or try again. Instead, she just took what she needed from Aerin's finger. Aerin has a high threshold of pain and didn't cry or scream when she was stuck. She hates to be held down, however, so she flipped out when she tried to move her arm and hand, which I was holding down. Andrew helped by feeding her Gerber Juice Treats, which we only allow in situations like this. She kept ripping the band aids off, so we had to stay in the room holding gauze on her finger until she stopped bleeding. The tech was so good that Aerin didn't bruise at all.

Afterwards, we headed to the 7th floor of the main hospital for our tour. A Child Life Program specialist, Ilona Scanlon, took us through the pediatric unit, PICU, and the step-down unit. They were all too familiar to us. They have many amenities to make things easier for parents - a playroom for each age group (toddlers, school age, and teen), a parent lounge with a washer and dryer and fridge, snack machines. Mrs. Scanlon answered all of our questions and spoke with us about what to expect and ways to prepare Aerin for both the surgery and the hospital stay. She gave us caps and masks to wear at home this week, so that Aerin gets used to them. We also happened to run into Dr. Haynes, which was a nice surprise.

The day was about what I expected it to be. It was hard. I just kept thinking how much I didn't want us to be there.

Pre-Op Day

We're heading to MCV for the Pre-Op Anesthesia Clinic (PAC) today and a tour of the surgical floor.

Summer Fun - Meeting of the Three Families

Here's a group picture from the Meeting of the Three Families. They get so much better as the kids get older. We got all 4 kids in this time.

Aerin's Slide

Surgery Date

So much has happened in the last few weeks. We had our semi-annual Meeting of the Three Families and it was wonderful. We had lots of fun and got a much better group picture. It was so good for Aerin to be around other children (and adults, too). Since then, she has been babbling constantly, which is excellent. She was very good about sharing her toys and her space, but the noise level was challenging for her.

The really big news is that Aerin's surgery is scheduled for October 19th. Dr. Haynes (along with his team) will be operating at the Medical College of Virginia. Together with Dr. Haynes, we have decided not to use interventional radiology, which would have involved the hemangioma being embolized. We all felt that the risks (infection, stroke, allergic reaction, more time under anesthesia and in the PICU) in a child as small as Aerin outweighed the benefits. Also, Dr. Haynes has a number of options to control the bleeding. He may be able to place a tourniquet around Aerin's shoulder, which would allow him to safely cut the feeder vessels under the hemangioma. He also may be able to do a "mini-embolization" if he is able to go under the hemangioma. He will be removing the entire hemangioma, regardless of whether it causes any level of deformity in Aerin's shoulder and arm. There is always the possibility of recurrence with hemangiomas and none of us wants to take any chances. Dr. Pozez will be closing, even if Aerin doesn't need a graft. She will make the shoulder and arm look as normal as possible. Aerin will be given prophylactic antibiotics before the surgery to prevent infection. She will also need to have a central line until she goes home. This is because she will need to have multiple blood tests and medications administered and a central line will be better than having her stuck constantly.

The reason we don't have a specific plan for the surgery is that Dr. Haynes won't know exactly what he's dealing with until he opens Aerin up. The MRA couldn't give all the information that was needed, so the surgery will be somewhat exploratory at first. Aerin will be transferred to the PICU (Pediatric Intensive Care Unit) after the surgery.

We don't know how long Aerin will be in the hospital. I will be staying with her the entire time she's there. They have fold-out chairs for parents to sleep in. Aerin's pre-op appointment is the week before surgery, on October 12th. We'll have our anesthesiology consult then, as well.

There is a strong possibility that Aeirn will need one or more blood transfusions during her surgery. Andrew will be tested in the next couple of weeks to see if he can do a directed donation (he and Aerin are both A+, I'm B-). Though they are the same blood type, Aerin has antibodies in her blood because I got so much Rhogam when I was pregnant with her. I'm not worried about this - they'll find a donor if Andrew isn't a good match. All of the blood from Aerin's 6 NICU transfusions came from the Virginia Blood Services and that's who we're using this time.

We've had many people offer to donate blood to Aerin. We can't thank y'all enough, but it has to be Andrew or an anonymous donor. VBS can't accept donations that aren't local and all directed donations require a doctor's prescription. If anyone would like to donate blood in honor of Aerin, that would mean so much to us.

We've had so many kind offers of help. We've pretty much got everything covered, but if folks would like to send good luck or get well cards to Aerin, that would be lovely. I plan to "decorate" her room at MCV the way I did at Henrico Doctors' and St. Mary's and I'm sure she'd like to see pretty cards. Please email me for our address.

Update Later

Sorry to keep posting pictures only, but we've been quite busy here. I'll try to post more this week or next. Until then, enjoy another picture.