Picture of Scarlett.

One-month-old (or so).

Today was a good day.

We woke up this morning without power.  We actually lost it at about midnight last night.  The electricity came back on around 6pm, which was OK.  The highlight of today was a poker game to benefit Scarlett.  Wamp was a gracious host, as always, and since the planned venue was unavailable due to lack of electricity, Wamp opened up his home.  Sixteen players got together for what was a great game with great people.  The proceeds went to our family to help offset some of the costs related to surgeries, travel to Philadelphia, and the like.  THANKS SO MUCH to all those who participated in any way.  -Dad.

Hurricane Irene

     Today we have all stayed home in preparation for Hurricane Irene.  Scarlett, Daddy and I snuggled in bed watching TV while checking the news every now and then to see where the storm is.  As of now we haven't gotten hit too bad.  There is A LOT of rain, but the wind has not been too strong yet.  We are still expected to get the worst of the storm within the next 3-6 hours.  So far Scarlett has slept through the excitement of Hurricane Irene, hopefully it stays that way, and we don't get hit too hard!

24 August 2011

     Today Scarlett and I had a nice day.  We woke up and took our time getting around to go see the pediatrician.  During our pediatrician visit the doctor told us everything was looking/ sounding good.  From there we needed to go get Scarlett's prescriptions filled and since the spa that I work at is on the way we decided to stop in there and introduce Scarlett to all of Mommy's friends at work.  It was great to see everyone and catch up a little!  Scarlett, of course slept through most of the visit, but hey it's hard work being so adorable!

First days by ourselves

     Yesterday was the first day Scarlett and I (Mommy) were left alone while daddy went back to work.  Yesterday went off without a hitch.  Scarlett and I went grocery shopping and then Scarlett napped the afternoon away while I caught up on some cleaning and other various chores.
     Today started out just fine.  A little girl was wide awake so it became bath time.  Scarlett usually doesn't like her baths, but today she stayed calm for most of her bath and only became irritated when I had to put her back in the bath to clean her off because she decided to potty in her towel while I was drying her off.  After her bath I then weighed her. (since she was already naked)  She weighed in at 6lbs 10.4oz.  After getting her lotion-ed and dressed we were hungry so we both had a little lunch!  Then came time for a walk.  Just as we were about to leave we felt the house start shaking!  Yes, there was an earthquake!  Of course there would be a natural disaster the first week I am alone with the baby! :o)  Luckily the earthquake was not too bad.  No injuries or damages, so we are very blessed!  We took our walk, stopping to talk to the neighbors about the earthquake as we went.  After we got home Scarlett was pretty sleepy so she laid down for a little nap.  We will see what day 3 has in store for us tomorrow.  Hopefully it will be a little less eventful!!!

"Status Quo"

Not sure what status quo means, but things seem to be turning into somewhat of a routine.  Scarlett cries, poops, eats, sleeps...not necessarily in that order.  And she does all that while looking pretty darn cute.  Grandma flew home today after being at our home to help us out for two weeks.  Thanks Grandma! 

Cardiology Appointment Today

     Today we took Scarlett to her first local cardiology appointment.  Everything went well and the cardiologist says she looks good.  Her heart sounded good and she is gaining weight.  She weighed in at 6lbs. 3oz. today!! 

New Freezer.

I forgot to mention one small detail :).  Cousin Christina had informed us a while ago that she intended to help us by bringing freezable food items over when we returned from the hospital.  Since we didn't have very much freezer space, we went to Sears and picked one up.  Then, when Christina came over to visit us, bring food, and see the baby, we were overwhelmed by how much she brought!!  I guess what we're trying to say, Scarlett, is that a lot of people love you!  Your Great Uncle also came down with Cousin Christina to see you for the first time.  You were very calm when they held you.

We feel blessed and overwhelmed by all the types of support we've gotten..we are so thankful for our sweet little baby girl.

We received a card in the mail yesterday, and Grampi sent us an email with a picture of his church sign calling for prayers for us.  How awesome is that?  Then today, a good friend stopped by and brought sustenance along with some accessories for diaper-changing time.  These are just a few of the ways we feel blessed, many folks have lifted us up in prayer and provided encouragement in a variety of ways.  Thanks everyone!!  Scarlett- we love you.  -Mom & Dad.

Working on getting settled in.

Today Grandma and I went to Wally World (WALMART) and Giant to do some shopping.  Interestingly enough, on the way in to Wally, I was run into by a young boy thrashing a shopping cart around.  After picking up the freezer bags and dishwasher detergent, he flew past me on an actual bicycle, nearly running me over.  Good times.  I guess Daddy will be having plenty of these good times from now on.  Mommy used to do most of the shopping.  Well, we are so happy that Scarlett is eating, sleeping, crying, and pooping.  The pediatrician saw her today and was pleased with the progress.  Daddy also had his first day back at work today.  Hey Scarlett!  -Dad.

Grandma is here!

Scarlett was happy to meet her Grandpa, Grandma, and Great Grandpa Wolff today.  Grandma is going to stay with us for a couple weeks.  We are looking forward to the help and company.  Thanks Grandma!!

First night home completed.

The first night was a little difficult to say the least, but eventually everyone was able to settle down.  Mama even got a few winks (I think).  Her and Scarlett are both laying down right now.  Today Grandma comes onto the scene for a couple weeks, and we receive our first visit from the Nurse.

We made it. Now real life begins.

We're back in our own home- we're tired, but we're happy.  It's a little different not having a nurse, being able to wrap your infant in blankets, and also having to deal with every other angle of adult life.  But we're up for it.  Scarlett is worth all the effort.  We love you honey.  -Mom and Dad.  P.S.:  Thanks to Karen for taking superb care of our dogs and home while we were gone!!  She even made us a cake and decorated the house in anticipation of Scarlett's homecoming.  Thanks Karen!

And today WE GO HOME.

The doctors rounded.  The home trip is finally on.  We have a lot of follow-up appts, meds to give the baby, and "programs" to be a part of, but we aren't too concerned about that right now.  We just want to get home and get Scarlett into a good routine of eating, sleeping, and pooping!  Thanks to everyone at CHOP who took care of our child.  You all were great!  And thanks so much again to all the friends and family who made this baby's birth and recovery (and her parents' recovery) possible.

Another long day, we should get to go home tomorrow.

We're so excited that Scarlett's clot is gone.  And we are SO ready to take her home.  We're so blessed to have the kind of family and friends that will put their own needs aside to make this easier for us.  And all you friends and family doing that- you know who you are.  Thanks.  Words can't describe what it means to us.  We will try to get some rest now but are really excited about tomorrow!

By the way, NO MORE LEG CLOT!

The doctors confirmed today via ultrasound that Scarlett's leg clot is GONE.  That means no special injections at home, and our baby won't have to be on blood thinners, praise God.

Daddy got his tattoo today.

Never thought I would do something like get a tattoo.  But I also never thought I would be blessed with such a precious, perfect daughter.  This one is for you sweetheart.  -Dad.

We had a good night

     Scarlett and Mommy had a good, but tiring night!  Scarlett ate pretty well throughout the night and we all got a little bit of sleep!  This morning her doctors came around for rounds and said tomorrow is probably the day we get to go home!!! (unless Scarlett decides not to eat today, or something else pops up)  After rounds I gave Scarlett her injection. (a second try for mommy, last night's attempt was HORRIBLE!!!!)  The nurse was very helpful today and we did a good job, Scarlett didn't even cry!  She has had her bottle for the morning and is now going to test her sitting in her car seat for the length of time that she will need to be in it to get home!  While she sleeps Daddy and I are going to go get some breakfast!

Girls night

     Well Daddy went out with Neil and Eon for his birthday (HAPPY BIRTHDAY DADDY!!!) so while the guys are out Scarlett and Mommy are having a girl's night in the hospital.  We got moved to a different room in the CCU tonight.  It is our own room and it is much bigger, with a view of the outside!  Also Scarlett got another visitor tonight, Chris stopped by!  Scarlett was very grateful to have a visitor (even though she slept through the visit!).  Now Scarlett is sleeping and Mommy is getting ready to go to sleep as well!  Goodnight! 

Busy day.

Scarlett is resting now, just had a decent 53 mL feed.  It's been a crazy day between infant care, hearing screening, lovenox injections training, learning about all the things we'll need to know/do....whew!  We're doing well, though.  Daddy is looking to forward to seeing Neil and Eon in a little while.

What a day.

I can't recall a time when I've been more tired, more exhausted, more emaciated, more hungry, more tired, more whipped, more beaten. Nor can I recall a time when I've been more blessed, more happy, more excited, more grateful, more looking forward to my future with my family. What a day! Love you Scarlett and Victoria!  -Dad.

Just met with the fellow doing the study.

They said our baby did not need another echo, so I declined the study.  It was hard to do, and I felt kinda bad doing it, but I feel I was doing so in the best interest of Scarlett.  I didn't want her to get cold, be agitated, have yet more ultrasound gel put on her chest, etc, unless it was reasonably necessary.  I love you baby girl.  -Daddy.

Scarlett looking good this morning.

The doctors are still not telling us when we can go home, all they'll say is "when Scarlett can prove she can gain weight."  The lactation specialist is working with Mom right now.  We've also been approached by the division of cardio about a study that would require Scarlett to get two extra echos.  I told them they can do it only if 1 of the echos can be counted as her discharge echo.  In general, I'd love to support studies that may help out others in our situation, but we gotta get home, and I don't want any extra stress added to my little baby.  So that's what's up today.  We get lovenox administration (needle injection) training a little bit later today, at 2 pm.  Love you Scarlett.

We Love This Little Face!!!!

Scarlett still recovering, received ultrasound, has a blood clot.

The fellow had trouble drawing blood from our precious angel, so the Dr.'s just went ahead and started the lovenox without a baseline blood draw (not a big deal).  The biggest deal about this clot is that mom and dad will have an extra drug to administer, and it won't be fun (needle injections).  We are going to leave the hospital for the night, but will contact the nurses throughout.  Probably no more updates until the morning.  Scarlett is sleeping now, peacefully, and about to eat again soon.  She's through the rough part, for now.  -A

Scarlett still recovering, waiting for ultrasound, likely has a blood clot.

The doctors are now saying that due to the cath, they can't feel a good pulse in Scarlett's right leg.  So they are ordering an ultrasound to check it out (which is taking painfully long to get).  They said they aren't worried about leg circulation, but this adds a significant wrinkle because she'll now need lovenox injections for the next 3 months or so (on top of the already-planned aspirin).  On the up side, Scarlett woke up and ate nearly twice what she normally does.  We're all so exhausted we can't even see straight.

Scarlett's Cath is done, she's recovering now, which could take 6 hours.

Hey Scarlett!  That note was from Daddy.  We love you sweetheart!  ...The cardiologist in charge of Scarlett's heart catheterization told us that everything was right on!  Shunt is open, pressures look great all the way down her aorta, and so forth.  The final hurdle is Scarlett proving to the attending Dr. that she can get the caloric intake she needs daily.  Then we are gone like a freight train [from this hospital]!!!  Come on baby girl, time to eat eat eat eat eat eat!  Love, your parents.

Scarlett is in the cath lab. FINALLY.

Those 4 hours this morning with a screaming, hungry baby and a crying mama who couldn't feed her child were NOT fun.  The cath lab team has finally taken Scarlett back, and we won't get our first update until about one hour from now.  All the stress of today combined with knowing we don't get to go home soon has proven to be a lot, but we're trying to hang in.  Pray for us........

Well, doesn't look like we get to go home soon after all.

Scarlett still has to get her heart cath today, and the nurse practitioner just stopped by to burst our bubble.  The nurse yesterday led us to believe we could go home by Wed., but now the nurse prac. says we'll be lucky if we get Monday of next week.  Apparently Scarlett's feeding isn't good enough, she isn't getting enough calories, and may need formula supplements.  This is pretty much upsetting to us because up until the little meeting we just had, they had also not mentioned any issues with her feeding at all....

Scarlett's all settled in the CCU

     Like Aaron said Scarlett is all settled into the CCU as of today.  We got to be a lot more hands on with her doing all of her feedings and most of her diaper changes!  It was a very busy day for our little girl!  She got an echo and I also gave her her first bath.  She did not like it! She had several doctors in and out throughout the day telling us about her upcoming procedure.  Tomorrow Scarlett will undergo a Heart Catheterization.  This is a test where they will put a catheter in her groin and be able to get a good look at what her heart is doing.  They like to do this before they send the baby home.  If everything goes well then we may be out of the hospital VERY soon!!!  
     On another note, I have to brag on my man a little bit!  Aaron has been such a GREAT support during this time!  And a WONDERFUL daddy (he even changed his first diaper today, and it was a stinky one!!!)!  I could not be more proud of my Hubby!  I Love you Aaron Daniel!!!! 
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Scarlett is in the CCU.

The Cardiac Care Unit (CCU) Nurse mentioned the words "discharge plan" today.  Boy was that nice to hear.  We may have a "plan" by the end of the day.  Everyone is still exhausted, but doing well.  Scarlett looks great and her O2 stats are very solid at around 87.  Right now the plan is to make sure Scarlett is ready for life outside the hospital which means breastfeeding from Mama!  Mama and Scarlett are presently both napping in Scarlett's new room.  She has one roommate, Zoey.  It's a bit of an odd setup, but the room Scarlett is in now holds two baby "cribs", and two small areas for families to sit around their child.  Our roommate's family has little kids, which always adds to the fun.  We aren't bothered though.  We understand what an amazing blessing little kids are.

Scarlett's moving to the CCU

     I just spoke with Scarlett's nurse to get an update on her night last night.  She did very well through the night.  Her O2 stats were in the mid to high 80's all night and she ate really well (70ml of milk for one feeding!).  The nurse said that by this afternoon our little girl should be in the CCU.  Today Aaron and I will take some classes so that we can take good care of our little Scarlett once she is discharged and we should also be able to give Scarlett her first bath and get her dressed for the first time!  We are so blessed and thankful for our little girl's quick recovery time!  Thanks again to everyone who has been praying and thinking of Scarlett, we know that it has helped immensely!!!  Praise God for our healthy girl!!!