S E V E N

s e v e n

Emma Kate is doing awesome! We can't believe that today she is seven years old! She started second grade two weeks ago and she is loving it. She enjoys math and her reading has really taken off. Magic Tree House books are her favorites! She's such a social butterfly and makes friends very quickly. She's very loyal and always thinking of others. Emma Kate just started her second year of gymnastics! She loves it and isn't afraid to try anything. Her favorite things to do are play outside, sing, dance, play 'school' with her siblings & play with her Bitty Twins dolls.  Her favorite TV show is Lab Rats on Disney. She loves to help me in the kitchen and she's really good at putting away silverware and folding clothes. 

Heart-wise, Emma Kate is doing very well. She sees Dr. Cardis every six months and her heart function is great! It's so hard to believe it has been two years since her Fontan! Seems like a lifetime ago. We love our sweet girl so much! Thank you for keeping up with her progress. We are thankful for all of our friends and family. 

Kindergarten, Watch Out!

First day of Kindergarten 

September 3, 2013

"When I grow up I want to be a nurse."

Emma Kate started Kindergarten today. She was so very excited. She had a little trouble with us leaving, but she did great. She was very happy when we picked her up and completely psyched for school the next day. I think she will make some good friends in her class. There seem to be some sweet girls that she talked about playing with. Her teacher is wonderful as well. I'm really looking forward to this year.

I know it has been quite awhile since I last updated, but as I always say, no news is good news. EK last went to see her cardiologist a couple of weeks ago. Her lungs are clear and she has been completely weaned off diuretics. She is now on 1 tab of aspirin, 1/2 tab lisinopril and 1 tab of aldactone each day. Dr. Cardis is very impressed with her recovery and she doesn't go back for SIX WHOLE MONTHS! That is the longest ever without seeing him. Or any doctor for that matter.

Thanks for checking up on our sweet girl! We feel so blessed with her amazing progress and we look forward to normal life ahead! :)

Home

Two weeks ago today, at this exact moment, Emma Kate was in the operating room.

Today we are home and I can hear her upstairs playing with her sister and brother.

Life is beginning to get back to normal. Of course, there are still a few things that aren't exactly "normal" in our routine. Emma Kate is on about 10 medications right now and will be for the next few weeks, I assume. Tomorrow she has a follow-up appointment with her cardiologist in Macon. She will have a chest x-ray and I think they will be taking off her steri-strips that cover her incision. We do no expect any surprises with this appointment. With the x-ray, they will be checking for fluid buildup on her lungs. And personally, I am a little nervous about it. Emma Kate hasn't exhibited any symptoms of fluid building up, she's on three diuretics and is eating and drinking normally. After the x-ray tomorrow, I will feel more at peace.

I do thank God so much for being so good. He is good in the good times we celebrate and in the bad times when we weep. So many people have told us that God is good. And we KNOW that He is. We know that He is good regardless of our circumstances. We are so grateful that Emma Kate is doing so well. The sound of her playing (and sometimes fighting) with her siblings is music to my ears. Thank you for your continued prayers and love for our daughter. We are completely humbled by your graciousness to our family.

Tomorrow her appointment is at 10 and I plan to keep the blog updated with her progress.

I took this yesterday afternoon. Emma Kate was begging to ride her bike. I compromised and let her ride the tricycle, so it wouldn't be as hard to balance. She rode up and down the driveway a couple of times and then went inside. That was enough for her. :)

keep on keeping on

I've been meaning to update for awhile now, but things have been so busy the last two days. 

Everything with Emma Kate has been going well overall! She was moved to her own room on Wednesday morning, less than 24 hours after surgery!  Here she is all cuddled in her big bed.

She got up later that day and walked for the first time to the potty. She was so brave, but was NOT happy about getting up. The chest tubes bothered her so much (and continue to). She tried again to walk yesterday (pictured below) but again, it was super painful. You can tell by the look on her face how upset she is here.

This was taken last night before Emma Kate went to bed. Her color really is so much better!

Emma Kate has been doing well. She has been resting a lot in bed of course, watching movies, reading books, playing a little with a few toys. She has also had several visitors and gotten so many thoughtful gifts and cards. We are so thankful for all of our friends and family praying for her.

A couple of things we are looking at right now are her chest tube drainage, her heart rate and her level of pain. When someone has open heart surgery, they will have a tube or tubes inserted into the chest to allow the fluid to drain off. Apparently, chest tubes are incredibly painful. And this is evident in Emma Kate because she winces in pain when we have to adjust her in her bed or get her out for whatever reason. The drainage itself is expected to last a long time after a Fontan surgery. Possibly a week or a week plus a few days. Right now, the drainage seems to be slowing down, but there have been a couple of "clots" in the tube, which causes it to stop draining as much as it needs to and the fluid stays on the lungs. We don't want this. We want the fluid to drain off and dry up. We would ask that you pray for this drainage to slow down and remain clear. 

Emma Kate is taking several medications including three diuretics to help dry up the excess fluid. In order for her to stay hydrated with all the diuretics, she obviously has to be drinking a decent amount of fluid. But she isn't. She doesn't want much to eat or drink. She said she doesn't want anything because her throat hurts (probably from the breathing tube irritation). But naturally, she is a bird when it comes to food or drink. She sips and snacks all day, but never has been a big eater. This, in conjunction with the diuretics, is causing her to become dehydrated. Because she is dehydrated, it is causing her heart rate to jump. Last night her heart rate was about 155-160 bpm. She has typically stayed around 120-130, so that was a big jump. Because her heart is beating quickly, it's causing her to breathe more quickly and take shallow breaths. The shallow breaths lead to lower oxygen saturations. Last night she was in the low 80s (which isn't terrible, but not where we would like her to be). 

This morning, they started IV fluids to treat the dehydration. She isn't getting much (about 50 mils ever hour), but it has seemed to do the trick. Now at 7:35 pm, her heart rate is averaging about 130 and she's satting at 87-88. The goal is for her to be taking in more by mouth so she doesn't need to rely on the IV fluids to stay hydrated. So, I ask that you please pray for her appetite to come back. At least that she drink enough to hydrate her little body, but not enough to make her sick (her stomach seems to be a little sensitive). 

This is a slow healing process. She's honestly doing amazing only three days post-op and everything is moving a lot faster than I imagined. I keep needing to remind myself that she just had surgery on Tuesday!

Thank you for keeping Emma Kate in your prayers! We truly appreciate all of you.  

Officially Post-Fontan!!

Before bed, and as they fall asleep, all of my kids love listening to music. Especially Praise Baby music. We have played this at bedtime almost every single night since Emma Kate was a baby. They love it. And I love it because it is so soothing and teaches them scripture through song.

So, this morning, I woke up around 4:00 with a song in my head. At first I was really annoyed because all I wanted to do was go back to sleep, knowing that we had a long day ahead of us. I tossed and turned, but I couldn't fall back asleep. The song kept playing over and over again. You know when you really know a song? You don't really pay attention to the words all that much, but for whatever reason, I was very aware of the words that go along to the tune that was playing in my mind.

These are the words, that for some reason, had never stuck with me until this very moment in time.

I have a maker
He formed my heart
Before even time began,
My life was in His hands

He knows my name
He knows my every thought
He sees each tear that falls,
And hears me when I call

I have a Father
He calls me His own
He'll never leave me
No matter where I go

He knows my name
He knows my every thought
He sees each tear that falls,
And hears me when I call

I have a maker
My life is in His hands

After realizing the words to the tune running through my head, I felt so much peace about today. I honestly cannot explain it. If you know me well, you know I get kind of anxious about things out of my control. It is not at all easy to give up control. I always have some kind of doubt or fear lingering in the back of my mind. But today, I just didn't. It was weird. But it was my Maker. Emma Kate's Maker. Who FORMED HER HEART! (Are you kidding me, song? Were you not totally written for my daughter!?)

No, in all seriousness, I truly felt the hand of God today. We had countless people texting, messaging, and praying. Brooks and I feel blessed beyond measure that Emma Kate is doing so well. We knew that no matter the outcome of this surgery, it was completely His will and He would be glorified. And we are grateful and completely humbled at the power of our God. Her life is in His hands. Trusting and knowing this, we cannot express how again and again He has been faithful.

Thank you ALL for blessing us with your prayers, time, love, thoughts, gifts. We are truly grateful to have such wonderful friends and family in our lives.

Right now Emma Kate is doing well. She is in CICU and has a nurse with her constantly monitoring. She was extubated around 5:15 and is now breathing on her own with a little oxygen blowing in her nose. She's asking for water, and when she speaks, she's very hoarse. Her throat is irritated from the tube. But that will get better with time. She is hurting a little bit from her chest tubes. Those are inserted below her chest incision to drain fluid from her body. Right now the fluid is red, and is thinning out. What we want is CLEAR fluid to drain and less and less of it as the days go on. Her nurse told us that she will probably remember little from her stay in ICU and they are talking already about sending her to the floor tomorrow. (When I say "the floor," it is just a term meaning she will go to a private room where Brooks and I will stay with her. We also call this the Step Down unit).

If you are praying for us, we are so thankful and have a couple of specific requests. Please pray against infection, that she heals well, that her chest tube drainage is normal and that her body will continue to adapt to her new physiology. She is already looking so great! Her skin looks more pink and not gray, pale and "dusky" the way it has looked before. (Her TOES are pink!! Her LIPS are pink!! My fellow heart mamas will understand what a big deal that is!)

Here are a few pictures from our day.

 Arriving at 6 am with her Lalaloopsy dolls. She loved riding in the wagon up to her room.

Being silly with our girl before she got the medicine that made her sleep.

Sleeping right before they took her back to the OR.

Post-vent and resting well.

Pre-Op

Just a quick update tonight since I really need to get to bed. And I'm sorry for the late post. Here's a few highlights from the day.

Emma Kate's pre-op went very well today. She is such a champ! 

-We met Dr. Alsoufi, her surgeon, today and went over all of the plans for tomorrow. 

-She is the first case of the day, which means we have to be at the hospital at 6 am. 

-Labs were the hardest. I hate that she was in pain when they drew blood--four vials in all. But it was over really quickly. 

-She did great for her echo, as usual.

-X-rays went well. She was so excited that she could see her bones and teeth! 

-The best part of the day for her was playing with "Charlie," a doll that she could play doctor with. She took his temperature, and measured his blood pressure. She got to see the bandaid on his chest and chest tube. Of course, she made sure to give Charlie plenty of shots. Cause you know, you get to do that when you're a 4-year-old doctor. 

-On a more serious note, playing with Charlie was super helpful for her. One of the child life specialists brought Charlie in with a medical play kit (your typical doctor play kit with a few added things that are specific to what she will be using). This is used to familiarize her with things such as an IV and pulse oximeter that she isn't used to. I absolutely adore the child life aspect of the pre-op process. I'm so thankful we are at a place that utilizes this program. 

-I gave Emma Kate a bath after dinner and she watched an episode of Good Luck Charlie before laying down for bed. She had a tough time falling asleep. I think she was a little over tired and I'm sure she's a bit scared and confused about everything going on. 

Please continue to pray for Emma Kate tomorrow. The surgery will begin around 7:30 am and last for about 5 hours. I'll try and update as much as I possibly can during the surgery. We will get updates every 90 minutes or so from the OR. 

Thank you all for your outpouring of love and support! We can feel all of the prayers being sent our way!

EK and Charlie 

 Having her echo done while she watches TV

This is a poster I saw in the hallway at the hospital today. Pretty awesome! 

 This is how we FaceTime!

Dinner at Mellow Mushroom  

Snuggles with Daddy before bed last night

Ready or Not

The beginning of Emma Kate's Fontan journey is finally here. For those of you catching up, we are here in Atlanta for EK's third, and hopefully final, open-heart surgery, called the Fontan. Her heart defect, HLHS, is treated with a staged series of three open-heart surgeries. The first two she had within the first six months of her life. The last time she was admitted to this hospital was over four years ago. It is so hard to believe we are at the door of this final step.

I am ready for this to be a distant memory. There is a small part of me that is dreading all of this and wants to keep putting it off. But mostly, I just want her to have the normal life she is used to. This surgery has been in the back of our minds for the last 5 years. Always looming. But it is time and it's real. Tomorrow we begin with pre-op.

Emma Kate really has no idea what is going on. However, we are really honest with her in an age appropriate way. We have told her why we are here, but it isn't really anything she can understand. She remembers coming up for her cath, and she has told me that she remembers taking yucky medicine that made her sleepy, playing in the hospital and eating pancakes. For her they are good memories. I'm so thankful for that. She's never had any issues being afraid of doctors, nurses, the hospital or even things like shots and getting blood drawn.

Tomorrow we will have a full day of  x-rays, echos, blood draws, meeting the doctors and such. Her backpack is loaded with things to do and all kind of goodies she has gotten over the past few days. She's been spoiled, really. We have such wonderful friends and family who have sent her gifts, cards and lots of love. And I'm not even kidding when I say she's been spoiled. She asked Brooks if it was her birthday!

Thank you! All of your love, prayers, messages and texts, they really mean so much to us! We feel so much love from our friends and family and we are grateful to all of you who love our daughter.

Many of you have asked what time surgery will be on Tuesday. We will find out details during pre-op, and I will update tomorrow with that info. Brooks will also be updating his blog, and he's a much better writer than I am. So, if you are ok getting a little bit teary-eyed reading about how much he loves our little girl, you can hop over and see if he has updated!

Here We Go | Heart Cath # 3

Hi everyone!

I just wanted to give a quick update on our girl.

This Friday she will be going in for a heart catheterization at CHOA. This is her pre-Fontan cath that will help give a better picture of her heart function and will also determine if she is ready for surgery. Click here for a little more information if you're at all interested in what a heart cath is.

Heart caths are typically outpatient procedures, and we should be going  home the same day. I plan to update the blog and probably my Facebook page as well on how Emma Kate is doing after her cath. Thanks so much for caring for our sweet girl. 

 

amazed.

Hello friends!

Thank you so much for checking up on Emma Kate. I've noticed a lot of traffic to the blog lately, so I thought it would be nice to update you lovely readers.

Emma Kate is doing very well. She turned 4 this past August and has done so phenomenally well over the last year and a half since I last updated. She is still post-Glenn and has had no complications whatsoever.  This child is simply amazing.  She sees her cardiologist every 3 months and her heart function continues to amaze all of us.

Recently we took Emma Kate in for her regular follow up.  We have been noticing her getting much more tired than usual. Many times she will sleep in until 830 or 9 am. (Which is really unusual, she used to be up at 6 or 630!)  She's also increasingly more blue. Her lips especially. It looks like she has been eating a purple popsicle. :) Her energy level is really good once she is up and about, and she's still bouncing off the walls as usual. However, her stamina has decreased quite a bit. She knows her limits, though, and for that I am really thankful.  

Dr. Cardis examined her and the tech did an echo. Her tricuspid valve regurgitation is mild/moderate. He upped her Lisinopril to a full tab every day. He also briefed us and said that we will bring her back for a regular follow up in March. At that point, he will assess and see about scheduling a pre-surgery cath in order to make plans for her Fontan.  His estimate is that she'll most likely have surgery in May or the coming summer.

... and honestly, we have such mixed feeling about it all.  We are dreading this and longing for this at the same time.  I have told several people that it just feels like a big black cloud lingering over our heads.  We don't want to admit her for open-heart surgery... but we know she will be so much better for her once it is over with.  We are utterly amazed that she has been out of the hospital completely since she was 6 months old. Not a single admittance. She's a miracle. We have treated her as we do our other children and she has a very normal, happy life. But we knew this was coming... we knew that she would eventually need surgery and it looks like the time is drawing nearer. We know she will be in great hands when the time comes.

One sad thing we learned over the last year is that her beloved surgeon, Dr. Kirshbom, left CHOA for Yale, I believe. We will greatly miss him being there and have debated staying in Atlanta for the Fontan or following her surgeon. Since the surgery is pretty straightforward, and the post-surgery care is such a huge factor in her success, we really feel confident in keeping her at CHOA. We trust the surgeons there very much. I think that staying will mostly likely be our choice for her.

It is going to be a completely different experience for all of us when the time comes.  Last time she had surgery she was six months old. This time she will be able to talk to us and tell us how she is feeling. She is already telling us things that completely blindside us. Just yesterday I overheard her talking to our older daughter about how when she was born the doctors had to open her chest and fix her heart, but it didn't hurt because she was asleep. 

break. my. heart. 

Emma Kate will tell you that she has a "special heart." She sees her scars and knows her sister and brother, mommy and daddy don't have them. We have always tried to be honest in an "age appropriate" way without making her feel different than others. I do not want this heart defect to ever define who she is. So we are trying to find a balance at keeping things normal, while also being cautious about her health and keeping pertinent people informed. It is a challenge, but we are so grateful for it.

Dr. Cardis listening to her heart during her last visit. 

 

Messy hair. Big smile. Bright eyes. Our sweet girl.

My Ministry

I decided last-minute that I would participate in Show Us Your Life from Kelly's Korner.

If you are not familiar with Show Us Your Life, here's a quick explaination. Each week on Kelly's Korner blog, she invites readers to add a link to their own blog to show others different aspects of their lives. This week the topic is Show Us Your Ministry. 

If you are visiting from Kelly's Korner, welcome to Emma Kate's Heart Journey! My daughter, Emma Kate was born in August of 2008 with a congenital heart defect called Hypoplastic Left Heart Syndrome. This means that the left side of her heart is severely underdeveloped and does not function.  Basically, she has half of a heart. She had two open heart surgeries before six months of age. She has also had one other surgery to correct a complication. She is a living, breathing, thriving miracle! I am so thrilled to share her story with others and give others hope!

We found out at my 20 week ultrasound (or thereabouts) that her heart was not normal and that she would need surgery to survive when she was born. Often times, when families are given this diagnosis for their unborn child, they are given the option to terminate the pregnancy, or to choose "comfort care," which means to let the baby live for as long as they would without surgery. These babies don't usually live longer than a few days to a week. 

I am so thankful that we were not offered these options and that we gave our daughter a chance at life! I hope Emma Kate's story can encourage any family going through this type of situation. Congenital Heart Defects are common, about 1 in every 100 children will be born with a heart defect of some kind. If you are going through something like this, please feel free to contact me!