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. :)

Heading Home!

It looks like tomorrow is the last day here at Egleston! Yay! Praying for a clear x-ray in the morning and good labs. Thank you all for praying for Emma Kate and for all of us during this time. I'll update more in a day or so. Today has been awesome, but I'm exhausted! Goodnight!

Good Day

Yesterday was a really good day! One of Emma Kate's chest tubes was removed, as well as her pacing wires, and that made her feel a lot better. After they were removed, she took a long nap and woke up wanting to leave the room. We went out for about 2 hours walking around the hospital, to the family library, garden, gift shop. She was walking on her own better and faster and generally acting more like herself. 

Today her x-rays and labs looked good and in a couple of hours they will come in and take out the other tube! Hooray! The only thing she'll have attached to her is her telemetry purse, which analyzes her heart rhythm.  The PA actually told us that she will most likely be going home tomorrow! 

That makes us so happy, especially Emma Kate. She's ready to get back to normal. And ready for me to stop taking pictures every five seconds.

At noon, they will come in to take out the tube. Please pray that this goes well and there are no complications. She did great yesterday, so I anticipate things running smoothly. If you would, also pray that Emma Kate will be able to hold down her medicines and food today. She is MAD that she has to take so many meds. She asked me this morning, "Why do make me take these all the time??!" She's just so ready to be done with it all. 

Thanks for keeping up with her, I will post later about plans for getting her home! 

Better and Better

Things here at the hospital have been going well for Emma Kate. Each day gets better. Today her chest x-rays looked the best hey have been. All the fluid on her left side has drained off. She got a couple of new chest tube drains this afternoon which will hopefully help each side drain off faster. Before, both the chest tubes were connected to one drain. Now they each have their own.

Emma Kate's pain level has significantly gotten better. We've stayed on top of her Loritab and Motrin during the day and Morphine at night. She's starting to itch a little bit around her incision site, which is a sign that it is healing. Last night her dressing around her chest tubes was changed and I gave her a little sponge bath. Then I brushed her hair while she brushed her teeth. She wasn't real happy about the hair brushing.

Earlier in the day, we walked out to the garden for some fresh air and then checked out the movie Brave from the library. It was a good day. She ate well and slept well. Her little personality is shining through a little more every day.

Emma Kate is getting tired of the hospital, though. I don't blame her a bit, we are tired of it, too. Brooks had to run out the drugstore last night and Emma Kate asked him if she could go with him... poor thing. At bedtime she asks us when we can go home.

Dr. Alsoufi came at rounds again today and said possibly one chest tube could come out tomorrow. That's awesome. Once they come out, I think we have to wait a day or so for the x-rays to remain clear and then we will be going home.

Here's a few pictures from our days here at the hospital.

 Headed down at 5 am for x-rays every morning. Clearly, she loves getting up that early.  

 Headed out for a wagon ride.

Watching for the Nemo fish during our walk. 

 Some pretty heart-shaped leaves in the garden. 

 Checked out the movie Brave!

Watching her shows on the iPad while she eats dinner. 

Bedtime.

Update

Yesterday was a good day.
--Emma Kate started to get her appetite back yesterday--she ate and drank more yesterday than she has all week.
--We had several visitors yesterday, including her siblings and my mom. She has perked up so much with them here. They have missed her and she is anxious to get home to be with them. Brooks' cousin and her fiance also stopped by for awhile. They all brought Emma Kate gifts that made her smile.
--Her personality is coming back slowly. She hasn't been talking to us too much lately, but yesterday was much better. She smiled more and was a little more talkative.
--She walked several times to the potty yesterday, went for a wagon ride in the garden and watched a lot of tv.
--She's taking her meds, but still complaining about it.
--Dr. Alsoufi discontinued the IV fluids.
--Her heart rate is much better, ranging anywhere from 105-120, depending on her activity.

This morning has been decent.
--Emma Kate woke up in a lot of pain. Her chest tubes are super uncomfortable. Today we are going to work hard at controlling her pain better by giving her something every few hours. Please pray that the pain gets less and less.
--She took her morning meds without much protest. She hasn't eaten much but is drinking fairly well!
--She woke up for about 30-45 minutes, ate a little, drank a little and then went back to sleep.
--When she woke up, her heart rate was 140s-150, probably because of the pain. After meds were given and she got situated, her heart rate is reading 114!

Dr. Alsoufi, her surgeon, has been great. He has come in every day during rounds and given an update on how he feels she is doing. She's definitely progressing in the right direction. Her drainage is good, but before the chest tubes can come out, it needs to slow significantly. It has decreased each day, so we can only expect that it will continue to get less and less.

Thank you all for keeping up with our girl and for all of your support and prayers!

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.

Surgery Day

I will be posting surgery updates here today. Thank you so much for keeping Emma Kate in your prayers!

7:17 pm - We were kicked out of CICU for rounds, but will be back to sit with her around 8-8:30.  I hope she will be able to drink some water soon after we get there.

5:45 pm - Emma Kate is officially extubated! No more uncomfortable breathing tube and not depending on the ventilator to breathe any more! She's doing awesome. She's talking to us a little bit, though I don't think she'll remember much of anything when she's fully awake. She keeps asking for water. "Can I have some water from my backpack?"--heartbreaking. She cannot have anything until 4-6 hours after extubation to make sure she doesn't throw up.

5:13 pm - We have been with Emma Kate in CICU since 1:15. She's doing great and starting to wake up. Respiratory therapist has been slowly weaning her off the vent. She's now breathing on her own and they are taking her totally off the vent now. She's being extubated as I type this. She will be able to drink water and have ice chips 6 hours after. She's already been asking for water. Breaks my heart that we can't give her anything yet.

11:45 am - Just spoke to Dr. Alsoufi, her surgeon. The surgery is over and went well! There were no surprises and everything went as expected. They will monitor her in the OR for another 30 minutes and then take her to CICU (Cardiac intensive care unit). We will probably be able to see her in an hour. The next several hours are critical, so please keep praying. THANK YOU for loving and praying for our daughter!

10:30 am - Heard from the OR again. Everything is going well and they will start the repair soon.

8:50 am - The OR called. Emma Kate is doing well, they just did her incision.

7:30 am - We walked Emma Kate back to the OR. She was sound asleep. We should hear from the OR about every hour. Surgery is expected to start around 8 or 8:30 am.

 6:00 am - We arrived at the hospital and almost immediately got a pre-op room. Took her vitals and gave her Versed (sleepy medicine). She was asleep within about 5 minutes of taking the medicine.

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!

Cath Results and Surgery Update

This post is long overdue; I apologize for that. 

Emma Kate had her heart cath in May. Originally, it was planned for April, but she ended up getting sick with the flu two weeks beforehand. She recovered really quickly and she only acted sick for a day or so. Her fever went away after two days and she was acting normally soon after her diagnosis. We realize how fortunate she was to recover so well. What we did not realize is that being on antibiotics would affect the readings of her cath, so we had to reschedule everything. 

So, May 3 came around and we took her to the hospital early that morning. She was in such a good mood, and had no idea what was going to happen. Here's a few pictures of her before.

She got a little Versed before they took her back to make her really sleepy. Honestly, it was hilarious. She was so cute, drunk off that versed. :) Note: She loves the movie "Wreck It Ralph" and a few times she says, "Ralph my man. My main man," to Brooks and it was adorable.

Coming out of the cath lab, Emma Kate was extubated and threw a fit. We didn't see it, but could hear her crying and screaming. I think this is pretty normal. Coming out of the anesthesia was rough for her, but she got back to being normal pretty easily.

The cath went well. Everything looked great with her heart function. Everything was wide open--no narrowing, no collateral vessels, her pressures were perfect. The doctor gave us some pictures taken during the cath that showed her heart and lungs. They are seriously amazing. I will have to scan and post them. One actually showed her teeny left ventricle, the one that does not function, as you know. It was really amazing seeing all of that. 

She was really hungry after the cath, and got to eat graham crackers until her pancakes and eggs were ready that she ordered. 

She watched cartoons on the TV in her room while she was still waking up from the medicine. 

  

Here she is playing in her bed with one of her Lalaloopsy dolls. This was maybe two hours after.

And here she is dressed and ready to head home.

Now we are gearing up for surgery, which will be Tuesday, July 9th. Brooks, Emma Kate and I will head up to Atlanta on July 7th, as we need to be there on Monday for all her pre-op stuff: blood draws, probably an echo and meeting the surgeon, Dr. Alsoufi. I think I may have mentioned that the surgeon who did her first two OHS moved to Connecticut. We will miss having him here this time around, but we've heard very positive things about Dr. Alsoufi.

I will be keeping the blog updated throughout our stay at CHOA. We expect all things to go well during the surgery, but we sure would appreciate all of your prayers for Emma Kate.

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.