I Heart Eleanor

For obvious reasons, organ donation awareness is a cause that is very important to us.

Fact: If you are sick or injured and admitted to the hospital, the number one priority is to save your life. Organ, eye and tissue donation can only be considered after you are deceased.

There are currently over 112,000 people on the waiting list – 1,800 of those are pediatric patients. One donor can save up to 8 lives.

Wow, time for an update! I apologize that it has been almost 9 months since our last post. Life has been very hectic! I am sure anyone that has ever had a baby knows how that is. With me being a full time stay at home Mom now, I thought I would have a little bit more free time to dedicate to blog updates, but so far that has not been the case.

Time to buckle down and make the time for it. In addition to Eleanor updates, we want the purpose of this blog to also be about spreading awareness for congenital heart defects (CHD’s) and educating others about organ donation. (More to come on this subject.)

Our healthy happy girl on Jan 3rd

Continue reading »

If you haven’t seen it yet, check out the latest Cartwheels magazine from Kosair. Eleanor is the tiny cover girl this season.

We can’t believe Eleanor is almost 6 months old already. At her last official weigh-in she was 11 pounds, 10 ounces. A little on the small side for her age, but she will catch up eventually. She is doing so amazingly well… every time we go in for an appointment with the cardiologist, her EKG and heart echo both look great. The doctor has no concerns. At our last appointment he said she didn’t have to come back for 3 months.

We are very sad to report the passing of Eleanor’s Poppy (Lindsey’s Dad) from lung complications. Thank you all for your love and support during this very difficult time for our family. Continue reading »

Just a little cuteness to brighten your day.

Bath time :)

We would like to say thank you to everyone who came out to the benefit. It was a wonderful success and you have all been so incredibly generous and kind to our family. We would especially like to thank Ten Boom and For The Win for playing, as well as Lisa Hargrave (Eleanor’s Nannie), Kelly Hargrave (Eleanor’s Auntie), Jeana Keating Miller,  Hunsinger Lane Baptist Church and everyone else who so generously donated their time and resources to make this benefit possible.

From the moment we made the difficult decision to publicize our family’s struggle we have been overwhelmed with kindness and support. Eleanor has fared as well as she has specifically because of all the positivity, prayers, and blessings that have been sent our way. There are simply no words to express how grateful we are. Thank you all from the bottom of our hearts, especially the tiny new one.

This Saturday, February 26th, a benefit concert and bake sale will be held at Hunsinger Lane Baptist Church from 6 pm to 9 pm, to help raise money for Eleanor’s medical expenses. The church is located at 3400 Summerfield Drive in Louisville, KY.

Two local bands, For The Win and 10 Boom!, have been kind enough to volunteer to perform. The bake sale will be featuring heart themed homemade treats. Please come out to say Hi, get some sweets and enjoy the music. It will be a lot of fun!

Although we would love for everyone to finally meet her in person, miss Eleanor cannot attend. :(  It is flu season and she is still too at-risk for infection, so she will be staying home with Daddy. But I (Lindsey) will be there helping with the bake sale and we will have lots of new pictures of her to show everyone :)

There is no cost for admission and everyone is welcome!

Hope to see you there!

If you cannot make it on Saturday, but would still like to make a donation, you can click here to do it online, or by visiting the Fern Creek branch of BB&T bank:

BB&T – FERN CREEK BRANCH
6740 BARDSTOWN RD
LOUISVILLE, KY 40291-3048

We have had our baby girl home for almost 4 weeks now, and we could not be happier. I can’t even describe how much of a relief it is to be out of the hospital setting. Looking back at where we started, there were so many times when we weren’t sure if we would ever make it to this point. It is truly a miracle that we have her home, and that things are so close to normal.

Things have been quite hectic… hence the lack of blog posts. I will admit – we got pretty accustomed to always having a nurse nearby to help with everything, so it was quite an adjustment at first. Now that it is just me and Eleanor during the day, (I’m sure like every new Mom), I am learning how to do a lot of things one-handed/while holding a baby, and how to get a day’s worth of chores done during her naps… so far I am very unsuccessful with that one.

A big part of our day is taken up by giving Eleanor all 10 of her medications. (She was on 11 when Wave 3 came out to do the story on her.) That is the only not-so-normal part of our daily routine. Most of them are given twice a day. We give her medicine at 7am, 10am, 12pm, 5pm, 7pm and 10pm. Several of them are supplements/vitamins that she will hopefully only be on for 6 months to a year. But there are 3 anti-rejection meds that she will have to be on her entire life. Luckily, everything is given orally, so we do not have to give her any injections.

We are also at the doctor’s office quite often for follow up appointments. At first, it was twice a week. Every time we go in they draw her blood for lab-work, then we go over to see her cardiologist where they do an EKG and heart echo, in addition to the routine weight/blood pressure/temperature/heart-rate checks. Dr. Das has been very pleased with her progress at every appointment so far. As of Friday (Feb 6th) Her weight was up to 9 lbs 10 oz. Since she is doing so well, our appointment frequency is now only once a week, and will soon drop down to once every two weeks.

Because she had a feeding tube for so long while in the hospital, it took some time for her to learn that she had to eat an entire meal on her own. The first week or so was pretty rough; she would drink an ounce, sleep for an hour, then wake up hungry again – almost around the clock. Gradually she is eating more and more at each feeding, and is now able to take between 3-4 ounces at a time and if we are lucky is sleeping up to 5 or 6 hours at night.

She is holding her head up really well and grabbing at things (like Mommy and Daddy’s noses) and likes to wiggle and kick her legs like crazy during diaper changes (so helpful!) She is a very happy baby. She grins from ear to ear when Daddy makes this high-pitched smooch noise, it is so precious.

We are still in a daze at how lucky and how blessed we have been to make it through all of this as well as we have. As always, we are incredibly grateful to all of you for your continued support and prayers.

Click the link to watch:

tiny transplant miracle