Hope for Emma's Heart

2nd Episode of Season 2 (Children's Med Dallas)

2012-03-16T23:37:00.000-07:00

Here is Episode Two for those wanting to see the conclusion of Rylynn's transplant!
Enjoy :)

Working SOOOOO Hard

2012-03-16T23:33:00.000-07:00

Working So Hard….

Having Emma home is an amazing feeling. I cannot put into words what it feels like to FINALLY be HOME as a family. It is the little things in life like using my own dishes, towels, sheets, etc. that bring happiness into my day. Life continues to be busy, but so fulfilling.

Scott and I continue to work on getting the house organized, decorated, and settled. Scott is still working in Oklahoma for the most part, so he spends a lot of time on the road.

Emma has a VERY full schedule that keeps us very busy. Emma sees a physical therapist, occupational therapist, and speech therapist each twice a week for a total of 6 therapy sessions a week. Then there is Mommy Boot Camp. All of her workouts are paying off though. Emma is wanting to put more weight in her legs and drum roll please…….Emma can sit on her own for almost AN HOUR!! She is getting so strong both physically and in will as well. Don’t get me wrong, her “strong-will” has helped get her this far, but man oh man can she be SASSY!

We are also beginning to be very clingy with mommy! She has started to say MMMMa, MMMMa, whenever she gets frustrated, upset, scared, etc. I love how much she wants to be with me, but want her to be accepting of other people. She was around so many people for so long that she was not nervous, but now that it is mainly just Emma and I all day she is more leery of new people or people she has not seen in awhile. So, in order to help her get over this little stage, her Daddy is working with her on therapies more, and her Gramma, Grampa, and Aunt Joni are keeping her and letting me get out of the house when they are here.

We have loved this beautiful weather God is blessing us with so much lately.

Emma had a cardio appointment today that went well. Emma is now on only 2 diuretics (which is a HUGE accomplishment for her), her labs looked good, and so did she. Dr. Lemler was very happy with what he saw, so we only have to go the the Cardiologist every three weeks now...shh..don't tell Emma :) That is a good thing because that means less exposure to germs. April will be very busy for Emma including visits to: Cardiologist, Nephrologist, Neurologist, Cranio/Plastics, and I am pretty sure a Pediatrician visit for shots, and fluoride for her teeth will also be thrown in there.

Some of Emma’s new accomplishments and favorites:

1. New Favorite Song: “Itsy Bitsy Spider”

2. New Favorite “Food” Coffee Creamer

3. New Favorite Toy “Walker and Drum”

4. New Favorite Activity “Sitting All By Herself”

Enjoy the pictures...

God is Good! All the TIme! God is Good!

WOW! I am WAY off of the ground!

Showing g-gma how to work my toy!

Hanging with my g-gpa!

PaPa and MawMaw telling me funny stories!

Second Hair Cut

HEE HEE! I found my sucker Grampa brought me!

Mom is making me work TOO HARD!

I got mad and pulled my tube out!

This is my MAD FACE!

Then I thought I was quite clever! TADA!

Children's Medical Center Season 2 Begins

2012-03-05T11:07:00.000-08:00

This episode features a beautiful little girl named Rylynn. We were neighbors in the CVICU. Such a great ending for a sweet family.

Just Sharing a Smile

2012-03-04T21:00:00.000-08:00

Huge Smile from my Sunshine

Emma, our little Precious Girl

2012-02-23T20:59:00.001-08:00

Let me start off by saying that Emma is so much fun! She amazes me each day with things that she picks up on and how much she loves interacting with us. She brightens our days! I have had several long days at work here lately and what is so amazing is how she can take any bad or long day I have had and cheer me up just with a smile, or a reaching up towards me, or a laugh, hug, etc.! She knows her mommy and daddy oh too well and the ways in which she can make us happy, oh and the ways that she can push us to get what she wants! ;) But she has been a blast at home and she loves being at home just as much as we do.

Speaking of home, as some of you are aware, Sarah, Emma, and I bought a house in Texas. (I wont put the address on here but if you would like it, just email Sarah at sarah_ecutiger1114@yahoo.com) It has been a great, stressful, amazing experience getting into this house. It is our first new home! Yay! We have FINALLY moved everything in and are just unpacking and mainly organizing, the oh so fun phase!

As you read below, Emma's previous echo showed a little decreased heart function. Our doctor was not too concerned by this, but wanted to watch closely. We talked below about a medication, Enalapril, to help her blood pressure out which he thought may be a driving force in why it looked the way it did. It was scary thinking about her heart not working as well. You think about all the what ifs? and whats next? Finally, we decided, as we waited for the next echo, we would just lift our concerns and frightened emotions up to God in prayer! Her heart echo was a couple of weeks after the initial results. After the echo was over, we got some good news. Her heart function had improved slightly which put her basically back to her baseline! Yay! Definitely an answered prayer!

All in all, we are just enjoying each day with have at home and each day we have with our sweet little girl! Going on walks outside, playing in Emma's room and game room upstairs, and so many more fun things. Sarah even slid down the slide on our communities swing holding Emma! So yes, we are enjoying life with our little girl!

We appreciate so very much all the thoughts and prayers and look forward to hopefully updating on here again soon!

God is good, all the time. And all the time, God is good!

CHD Awareness Week

2012-02-07T10:17:00.000-08:00

CHD Facts

• Congenital Heart Defects are the #1 birth defect worldwide

• Congenital Heart Defects are the #1 cause of birth defect related deaths worldwide

• About 1 out of every 100 babies are born each year with some type of Congenital Heart Defect in the United States (approx. 40,000/year)

• Nearly twice as many children die from Congenital Heart Defects in the United States each year as from all forms of childhood cancers combined, yet funding for pediatric cancer research is five times higher than funding for Congenital Heart Defects

• Each year worldwide 100,000 babies (under one year old) will not live to celebrate their first birthday

• Each year in the United States approximately 4,000 babies (under one year old) will not live to celebrate their first birthday

• The cost for inpatient surgery to repair Congenital Heart Defects exceeds $2.2 billion a year

• Of every dollar the government spends on medical funding only a fraction of a penny is directed toward Congenital Heart Defect research

• The American Heart Association directs only $0.30 of every dollar donated toward research. The remainder goes toward administration, education and fundraising efforts. Of the $0.30 that goes toward research only $0.01 goes toward pediatric cardiology for CHD

• Though research is ongoing, at least 35 defects have now been identified

• Although some babies will be diagnosed during gestation or at birth, sometimes the diagnosis is not made until days, weeks, months, or even years after. In some cases, CHD is not detected until adolescence or adulthood

• It is a proven fact that the earlier CHD is detected and treated, it is more likely the affected child will survive and have less long term health complications

Facts From ~ http://www.itsmyheart.org/chd-information/chd-facts/

Emma is a CHD baby. Emma was born on October 4^th 2010 with a severe heart defect called Hypoplastic Left Heart Syndrome with Intact Septum. According to her cardiologist, this specfic heart defect is ‘incompatible with life.’ What he meant by this is that if undiagnosed prenatally, Emma would not have lived past a few hours old. However, Emma did survive and after a CRAZY year journey (read here) Emma is alive, happy, and developing despite the ODDS. I love my little CHD heart hero.

Please join me in spreading awareness during CHD awareness week (Feb 7^th-14^th).

You can help by:

1. Posting Emma’s Picture as your profile picture this week.

2. Wear RED in honor/memory of CHD babies.

3. Donating Time or Money to organizations that help support these babies.

My heart Hero!

Click here to read about a wonderful heart mom poem.....

Emma's Story Updated

2012-01-29T22:20:00.000-08:00

For those who would like a brief overview of Emma's journey, I updated her About Emma page.....After a few hours of work...lol...I think I am caught up.

CLICK HERE TO READ

Cousin Time!

Yes, mom that is icing on my face!

Giving Coen her..."don't touch my toys look"

Coen loved his cupcake.

Aunt Randi giving Emma her ice for her sore teeth.

A Small Bump in the Road

2012-01-27T18:34:00.000-08:00

Let me begin by saying that we are LOVING having Emma home. She is truly growing and developing every day. She seems to be getting stronger and is wanting to put some weight on her legs finally.

We see the cardiologist once a week to track Emma's labs and x-rays. We are trying to get Emma on a lower diuretic regimen, so we can lower her supplemental potassium and calcium. She has been tolerating these weans and her x-ray has actually continued to look good. Since her x-ray has looked good, we having been working her oxygen down. She can even be OFF oxygen for periods of time! YAY EMMA!

So for the not so good news...

At today's cardiologist appointment, Emma's heart echo showed a minimal decrease in RV (right ventricular) function. Emma's cardiologist was not too concerned since the rest of the echo looked fine, Emma looks so good, and her x-ray is looking good. He is starting her on some Enalepril to hopefully help with her higher blood pressure (which had not been high) which should help with the after load of her heart.

In saying all of this, the echo today is one "snapshot" of her heart, so we will be getting another echo in a couple of weeks to look at her heart again. Obviously, we would like to see her heart function return to its baseline.

We ask for your prayers. Please pray that Emma's heart function will return to normal and that this is one "bump" that we do not have to "go over" again.

God is Good! All the Time!

P.S.
Please also remember Emma's heart buddies in your prayers. We have several little friends who are having a tough time right now.

Home Sweet Home

2012-01-23T10:59:00.000-08:00

Home Sweet Home:

Well, to get everyone caught up with the Stewart Family. 2012 has started with a BANG! Since we decided to actively look for a permanent place to live in the Dallas area, and transition our family to living in Dallas, we have been looking for a house in the North Dallas area (specifically Frisco). House shopping is a lot of fun, but a lot of work, so things have been pretty busy around here. Scott and I are both preparing for BIG tests as well. Scott is studying to take his Pharmacy Texas law test (this FRIDAY) and I am prepping (once again) to take my PhD quals in April. This means that we are both up pretty late each night studying.

Speaking of being up late, Emma has decided that she wants to be a night owl. We put her to bed around 8-9pm every night. She goes to sleep fairly quickly and sleeps quite soundly until 1am then the party begins. At 1am is when Scott and I typically go to bed and we start one of her feeds at that time and give her a final dose of diuretics. Scott and I are typically drifting off into what we hope will a restful night of sleep when the gagging/coughing begins. Emma has learned that coughing/gagging gets her attention. The problem is that she actually makes herself throw up and since aspiration = hospital stay, we have to address this issue when it occurs. Along with wanting attention, Emma is also teething. Now please remember that Em has had 3 open heart surgeries; however, when Emma is teething, she runs a low grade fever, screams, pulls at her mouth and is a GROUCHY BEAR. Once Emma wakes up, she is pretty much awake from 1am to 10am when she takes her first nap. This means that Scott and I are NOT getting any sleep and are slightly exhausted. This is proving to be a “semi-normal” baby thing that we are trying to tackle with our not so “normal” baby. And who can resist her big smile and one of her new tricks (reaching up for us when she sees us so we will pick her up).

Besides not sleeping, Emma is doing well. She has begun all of her home therapies again and is already beginning to gain muscle and strength that she lost while being in the hospital for so long. We continue to see the cardiologist once a week to check her blood work and X-ray. We are trying to wean Emma off of her oxygen. She is currently on 1/16 of a liter (basically a little whiff). We hope we can get her totally off of O2, but are being cautiously optimistic, as she does not have full use of two lungs.

Obviously it is still VIRAL season. We love seeing people and having Emma showered with so much “lovin” but please remember that if you are sick or have even around people who are sick STAY AWAY. The smallest respiratory infection will put Emma in the hospital. Also, if you want to see her, you MUST have your flu shot.

Thank you again for all of your love, support, prayers, and encouragement. Please continue to remember us in your prayers as we transition our lives to Texas and to keep Emma safe and healthy as she grows and develops. Also, please remember our heart buddies in your prayers.

It is so hard to describe to people what it is like to live a daily life with a child with special needs (both health and development). We literally live day to day. The small annoyances are TRULY INSIGNIFICANT. Please give the healthy kids in your life an extra hug and kiss today. None of us are guaranteed tomorrow, so live today with no regrets. Thank God for all of the blessings, both big and small in your lives and try to make a difference for HIM today.

God is Good all the Time….All the Time, God is Good!

Ringing in the New Year with Stephanie and Aaron (and Baxter too)

Emma playing outside on a beautiful today!

We love the natural Vitamin D

Sassy Pants (one of my new fav pics)

Crazy hair baby! She is learning to enjoy her new bath seat!

Daddy made a tent in the living room for a slumber party!

Look Gramma it's a leaf!

First Hair Cut

2011-12-28T18:38:00.000-08:00

Emma got her first hair cut on December 26th. Of course, Aunt Joni made her look beautiful. Enjoy the following pics...

Home Again Home Again Jiggity Jig…

2011-12-28T18:34:00.000-08:00

Well, on Tuesday we got to come back to the aprtment. We are so excited to be back in our home away from home. We pray that we can actually stay here awhile and stay FAR AWAY from the hospital unless we are there fro clinic visits.

Emma is doing well. We did have to come home on oxygen due to her x-ray still looking very wet; however, we are hoping that the longer she has to heal the better her x-ray will begin to look and we can slowly wean the oxygen off. Emma is still on a high dose of diuretics to help pull off excess fluid. These medications are great, but cause problems in other areas (electrlytes), so we will be monitored closely for the next several weeks in order to make sure that Emma’s body maintains a healthy balance.

Speaking of balance, we are trying to get Emma back to a balanced routine. We have contacted her home therapists to hopefully start back physical, occupational, and speech therapy soon. We will also be going to get her helmet adjusted tomorrow to try to get her head reshaping the correct way.

Please pray that Emma can stay healthy and out of the hospital.

Also, Scott and I have made the decision to move to the Dallas area. This is a big step for Scott, Emma, and I. Please pray that this will be a smooth and good move for us all!

God is Good! All the Time! God is Good!

The following pictures are of the day we came home and the day following with a visit from the Hendricks clan!

Twas the Night Before Christmas

2011-12-28T18:24:00.000-08:00

Twas the night before Christmas.

When all through the CVICU.

All the nurses were scurrying.

They all know what to do.

We celebrated our Christmas Eve with our hospital family.

The doctors provided a meal that we ate happily.

We took Emma on a ride to see the hospital’s big tree.

The look on her face was pure glee.

Christmas pjs are on and the music is playing

Emma is bathed and her nurses are saying.

It is time to rest up for Santa is coming soon with his sleigh

Emma will start her Christmas morning with pokes and an X-ray.

Emma was nestled all snug in her hospital bed.

While visions of Valium danced in her head.

The presents were tucked under our little tree.

And all the nurses and doctors just had to come see

Christmas morning is here and guess who arrives?

Santa is at the door with presents and Emma just cries.

She loves all her gifts especially the tissue.

She’s one happy baby despite all her issues.

Our family arrives to join in the fun.

It is so nice to be together as one.

Emma opens her presents from all Santa’s elves (aka Grandparents, aunts, uncles, cousins, nurses, respiratory therapists, and friends)

And the look on her face tells us she is enjoying herself.

We had a great day and Emma was worn out.

She went right to sleep without one little shout.

Christmas is Christmas even in a hospital room.

There was lots of love around not one ounce of gloom.

You learn really fast it’s about love after all.

No matter how you celebrate whether big or small.

We are so blessed to have another year with our Princess.

Scott and I consider ourselves really Blessed.

We hope you all had a wonderful Holiday.

And we want you to know that we mean when we say…

Merry Christmas to all of you who have shown us love and care

May your New Year be filled with many blessings to share.

Emma working her tummy muscles

2011-12-11T21:08:00.001-08:00

Sassy Pants

2011-12-11T20:52:00.000-08:00

Sorry for the delay...Emma is keeping me quite busy these days!

First of all, I am going to give everyone a quick overview of the last week:

1. Emma’s fevers did not get better, which resulted in respiratory distress and ended in a move to the CVICU and intubation.

2. Emma was very dry so she could not receive diuretics she needed volume and blood, which caused her to accumulate fluid in the chest cavity.

3. All tests (viral and bacterial) came back negative: FRUSTRATING

4. Dr. Forbess put in a chest tube.

5. We weaned off of the vent and switched to 20 LPM of Vapatherm.

6. We have slowly weaned down on the Vapatherm and are now at 5 LPM.

7. We are still in the CVICU with a chest tube in place.

The above list is one story our little Emma seems to tell a lot. I cannot tell the times I have predicted the above events occurring because it seems to be Emma’s recurring problem. Pleural effusions + lymphatic damage = recurring issues with diuretics (too wet or too dry), multiple chest tubes, and respiratory problems. In all reality, these issues are what have kept us here in the hospital since her Glenn procedure.

However, Emma is a happy baby (for the most part) and is changing and growing more and more every day. We are having the best time with Emma and truly enjoy watching her meet new milestones. We are so glad to have her feeling better again and filling our days with many smiles and laughs. Emma is also vocalizing more and LOVES to talk to her daddy on the phone. Emma is also getting very good at throwing "fits" to get her way. And, it is like she knows that it will make her monitors alarm which will bring in a crowd of people. Hence her new nickname: Sassy Pants. As soon as we do what she wants she gives us this ornery smile.....oh boy are Scott and I in trouble :)

As we near Christmas and think about the possibility of spending another holiday in the hospital, we truly are just thrilled that Emma is here and happy. Christmas is about spending time with those you love and whether that is in the hospital or at home, we are blessed to be spending it together.

We hope and pray that as the holiday season approaches, you truly reflect on the love of family and NOT on the material gifts that the season also brings.

God is Good! All the Time! God is Good!

Until Next Time …..

I didn't do it...I promise ;)

Gramma and Emma played so hard they passed out!

She makes my heart whole!

Tis the Season: For Viruses That Is!

2011-11-29T09:28:00.000-08:00

Please pray for Emma. She has been running a fever off and on since Thanksgiving. We thought that she had turned the corner and was feeling better yesterday afternoon, but by 3am she was running a fever again, has a very high heart rate, and was coughing her little head off. All of the tests we sent off a few days ago have come back negative, but we sent off fresh cultures again today to see if anything new has come back. She is miserable and not sleeping. The irony is that the hospital is the worst place we could be right now with all of the rooms around ours in isolation for some sort of virus. Please pray that we can kick whatever this is so we can get OUT OF HERE!

Update on Miss Emma

2011-11-25T10:25:00.000-08:00

Well I just looked at our last update and as stated in that update, a lot has happened since the previous update. We apologize for the delay in updates, can get kinda busy around here! ; ) Well Emma was on 20 liters of Vapotherm but we have been able to work down to 6 liters on a heated nasal canula! Big big progress there! We have been also working back up to where we were on feeds and trying to get her back to bolus feeding (larger volumes at a time) from continuous feeding. We have made quite a bit of progress in that area now as we are kinda back to where we were when we were feeding her every 3 hours. We have a little bit of work left still in those above two departments, but I know that we will get her there... (keep reminding myself, slow and steady wins the race..) Emma, has been all smiles since being extubated. All smiles and she has also been loads of fun. She is starting to have quite a little voice and she is "ahing" towards both of us when she feels like she needs to tell us things (which mind you is quite often!). She is also developing quite a little addition to her already wonderful personality and that is in the area of increased sassy-ness. She has this little cry and temper that is developing......... it makes us laugh, which, doesn't make her happy! We have also moved from the 3rd floor ICU to the 8th floor (one of our nurses called it "the zoo" so Emma wouldn't know she was moving, and also progressing to going home! hehe Yall might remember how she likes to throw us for a curve ball when she starts figuring out she might can, go home!).

So, that in a nut shell, brings us to Thanksgiving day. We had a lot to be thankful for. I mean, wow, God has blessed us and brought us through some crazy times. We have a wonderful daughter who lights up our lives. We have wonderful people, like all of you and our families, in our lives, and the list goes on. There is much to be thankful for. But, as always, Emma wants to remind us of how she can be sassy, and so on Thanksgiving eve night and Thanksgiving day, Emma ran a nice fever. We drew some labs but nothing came back positive for anything. On top of that, she decided to start this coughing spell that brings her to vomiting. Just recently one test, testing to see if she had a virus or not, came back negative, which is good! However, the frustrating part about that test is that it only tests for common virus's, not all. That means that, even despite coming back negative, you could have or had a virus. But, a negative result, in my book, is still better than a positive one! We think she might be trying to cut one or more teeth again. I hope that she is getting closer and closer to those 20 teeth (she won't let us look in her mouth), because this is the worst thing, to her, that she has ever experienced each time she cuts one tooth. But, despite all that, we enjoyed our Thanksgiving, even though it was just the three of us in the hospital. We watched the parade, ate a nice lunch, then just played with Miss Emma the rest of the day, well that is when she wanted to play! ; )

All in all, Emma is doing very good. We just keep praying that she can ween down even more on the oxygen and continue to work up on her feeds. We also keep praying that she is not coming down with some form of sickness as she is still running a low-grade temperature.

God is good, all the time. And all the time, God is good.

Slow and Steady Wins the Race

2011-11-14T12:00:00.000-08:00

Since the last update….

Since we have updated you last, a few major events have occurred! Emma is extubated. YAY Emma! We extubated her to 20 liters of Vapatherm. This is a lot of oxygen flow in her little nose and she does not necessarily care for it; however, it is necessary at this point to keep her lungs open. We dealt with intermittent lung collapse shortly following extubation but seem to have that under control right now. We are lowering her flow be one a day and are currently at 15 liters.

Emma’s chest tube worked its way out, so she is currently chest tubeless. We are hoping and praying that we will not have to insert another tube anytime soon.

Emma is much more like herself again. She is laughing, playing and ‘talking’ a lot more each day. She is really finding her voice and ‘ah, ah, ahs’ all of the time. She is VERY weak from all that has happened to her, so she was not very happy with me yesterday when I asked her to work at sitting up, rolling, etc.

The plan….

Well, the plan is to get her out of the hospital. So, in order to do that we must get her off of the vapatherm onto a regular nasal cannula and transition her from IV diuretics to PO (by mouth) diuretics.

Emma has been a happy baby lately and has really enjoyed having her hands free to play. Please continue to pray for our little Princess as she continues on this crazy journey.

FRIENDLY REMINDER:

IT’S BACK!!!! VIRAL SEASON THAT IS! Please remember that anyone who would like to see Emma MUST have their flu shot. Also, if you are sick (even the sniffles) or have been around someone who is sick, please do not come visit us. We appreciate the care and concern, but MUST keep Emma safe and germ free.

Thank you again for the constant prayers, encouragement, and love. Please say an extra prayer for our heart buddies. Some of them are really having a hard time and could use the prayers.

Also, A BIG THANK YOU to all of you who donated items for the Hope From Emma’s Heart project. The packages are put together and are just waiting for a less hectic time to be delivered. I will write more about them later, but you all went above and beyond to fill them with AMAZING items. I tried to get thank yous out to everyone who donated, but if you have not received one and donated something please know that your generosity is GREATLY APPRECIATED!

God is Good! All the Time!

My finger may be small but I can still wrap my Daddy around it.

Promise me you'll remember: you are braver than you believe, stronger than you seem, and smarter than you think.

You are WORTH IT ALL!

Before I was a Mom, I never held a sleeping baby just because I didn't want to put it down.
I never felt my heart break into a million pieces when I couldn't stop the hurt.
I never knew that something so small could affect my life so much.
I never knew that I could love someone so much.
I never knew I would love being a Mom.
~

Since the Last Update.....

2011-11-06T06:19:00.000-08:00

The last several days have continued to progress in a slow and steady fashion. One of the biggest and best news we have received is that her heart function is back to NORMAL. This is such big and exciting news. We were unsure what exactly occurred on the night that Emma crashed (did her heart quit functioning properly and that caused respiratory problems, or the other way around), so to have her heart function normalize was a huge relief. We were all just waiting around to see if her heart would pick back up and work like it should. This waiting game was difficult and caused a lot of anxiety. After all, if her heart had taken a permanent hit, what would we do? What would the new plan be? So, as of right now, all of the inotropes (or medicines that change that force of the heart’s contractions) are OFF! YAY Emma!

Our biggest hurdle at this point is getting off the vent. We are making strides in the right direction, but due to constant effusions (fluid in the chest) and lung damage from being ventilated for so long, Emma’s lungs do not always want to cooperate like they should. We are currently walking her down a little bit at a time in hopes that we can extubate her in a few days.

Emma’s swelling has decreased significantly and she looks much less like the “Michelin Man”.

A little over a week ago, we were told that our little Princess would not live through the night. We were told by multiple doctors and nurses that babies that experience what she did that night do not live. Throughout it all though we were also told that Emma has the most fight that they have ever seen in a baby. She continues to fight and defy odds. We know who is in control and who is holding our little girl’s hand.

We thank you again for the prayers, encouragement, and concern.

God is good! All the time! God is good!

Looking much better...our little fighter!

Our little doctor in training (pre-crash)

Sweet baby girl (pre-crash)

Update on Miss Emma

2011-11-01T15:08:00.000-07:00

Well it has been a good past couple days. Emma is improving which is an answered prayer from God! A few days ago, the echo of her heart said that it had severe impairment of the right ventricle. This was devastating as her heart has never been a big issue when she was really sick in the past. The doctor's thought that it may improve but said that we would tackle the question of what to do next if her heart did not improve. Yesterday, they did a repeat echo and her function of her right ventricle was listed as normal!!!!!! God is good! She still has some impairments that they noted but it appears to be overall improving. She has been able to get a lot of her excess fluid that she has off of her through diuretics. This is great because she was so swollen, especially in the face, and also because that much excess fluid is never a good thing. She is starting to look more and more like our sweet little princess each day. We have been on what they call an oscillatory ventilator up until yesterday when she was able to transition to a normal ventilator. Today, we have continued working her down on her settings to get her closer and closer to being extubated. This will be a journey, but we will just keep working with her to get her there. We have been able to cut all but one of her medications off that support her heart which shows her heart is continuing to improve as well. We have started to be able to feed her with a little Tolerex which is another great sign! All in all, she continues to improve and is much much better than a few days ago. A special thank you to all the staff here at the hospital who continues to take such amazing care of her!!!!

Of course, we give all the glory to God who continues to watch over our precious little princess and continues to bless us all each and everyday. God is good, all the time. And all the time, God is good.

Specific prayer requests:
1) Pray that she continues to steadily improve each day.
2) Pray that we can get rid of some of the excess fluid surrounding her lungs in her chest.
3) Pray that we can continue to work quickly at getting her off of the ventilator.
4) Pray for her heart, that it continues to improve and get back to normal.
5) Pray for all the doctors, nurses, respiratory therapists, techs, etc. that take such good care of her each and everyday we are here.

My Little Fighter

2011-10-31T04:12:00.000-07:00

That smile she is giving me in the picture below is one of the things that keeps me going. I miss that smile so much right now. Emma continues to make baby steps in the right direction which is a good thing. She is trying to breathe over the oscillating ventilator which is weird because it breathes like 600 breaths a minute...but that is my little fighter....always working hard to survive. Her swelling is slowly coming down (we have a LONG ways to go, but we have urinated a liter off....5 more to go) yes, Emma had 6 liters of extra fluid on her). Her hands and feet are warming up and I can actually feel pulses...yay! We will get another heart echo today to look at function (please pray it is improved). Thank you all for the prayers and encouragement. I wish I had time to write you all individually and tell you how much it means to me.

Brief Update

2011-10-30T11:48:00.000-07:00

Just a brief update. Emma is still stable and improving slowly. We have been able to work down on her vent settings some but with all the fluid that she has accumulated around her lungs, it is going to be difficult to go down much further without probably having to have that fluid drained off. We have been able to remove one of the medications that support her heart function (inotropes), which is really good. They have been working at removing some of the fluid off her body that has accumulated since she got admitted. This has been successful thus far which is a big blessing. She had/has so much excess fluid accumulated. All in all, Emma is making positive steps forward. Continue to pray for her and her recovery process. Also, remember to pray for all the doctors and all the staff here at the hospital as they take amazing care of Emma.

God is good, all the time. And all the time, God is good.

Update

2011-10-28T16:47:00.001-07:00

Brief update: Emma's lungs are filling with fluid and causing ventilatory issues so they tried to put in a pigtail but she has so much scar tissue that it was unsuccessful. We are trying to control things without surgical chest tube intervention but have that in our back pocket. We are still fighting for Emma and she is still fighting. Her heart function looked minimally improved. Everyone is working really hard for her. We have an extremely uphill battle and to be honest it is very scary but our God is good and He will carry us through whatever storm comes our way. We want to thank everyone for prayers and support....it gives us peace at a time when we need it the most

Please pray

2011-10-27T06:23:00.000-07:00

Emma had a cath on tuesday to fix some issues in her heart. She has had a difficulty recovering and has run a high fever and had some swelling. Emma took a turn for the worst yesterday afternoon/evening. She had to be intubated because of her acidotic blood gases. The problem that we then had was that none of the traditional ventilators were working so we had to put her on an oscillating vent. The challenge then was to correct her acidotic blood gases. It took all through the night and into this morning to see some improvement. During all of this, her heart took a hit and is not functioning like it should. Things are very critical right now but Emma is still fighting so we are too! (they have her sedated and paralyzed). Please pray for our princess as she fights this uphill battle.

Update on Miss Emma

2011-10-15T22:11:00.000-07:00

It has been a while since we last updated the blog and I apologize. Emma's birthday went well and she continued to improve and we were discharged on the 8th. We went home and enjoyed watching the OU/Texas game. After the game, we put Emma down for a nap. Everything was going great and we were excited to be home, but when Emma woke up from her nap, we noticed she was having a little more difficult time breathing. So, we called up to the hospital and told them what was going on. They called back and told us to just watch her and see if she got any better or if it got worse. So, we watched her through the night and then through the daytime on Sunday. We decided Sunday night, that we needed to take her in as she had not gotten any better and looked a little worse than on Saturday. So, at around 11:45pm, we headed up to the ER at Children's to get her looked at. Sarah and I thought that more than likely she had developed another effusion on the left side, and so it was no surprise to us that when we saw the xray, an effusion was glaring out at us from on the left side. We were admitted to the 8th floor for them to attempt to diurese off the effusion. Once on the 8th floor, they decided to send us down to the ICU in case she would require a chest tube placed. After a few days of intense diuretic therapy, the team decided that a pigtail chest tube would be the best option as her electrolytes were starting to become abnormal and possibly difficult to try and normalize as well as her effusion not improving significantly. So, on Wednesday of this week, she got another pigtail chest tube. It has dramatically helped her improve as her breathing has normalized, her sats have increased back to baseline, and her xray has cleared up quite nicely. Now the big question at hand is going to be when to remove the chest tube.... Last time her xray looked great before we left the hospital and she somehow re-accumulated fluid in her chest. So, as you might imagine, the team is not wanting to make any rash decisions. Today, we have been enjoying the OSU and OU games up in our room on the 8th floor. Emma is very happy, but at times still quite fussy from teething (she is cutting around 8 teeth at once). Amazingly, with all Emma has been through, teething is by far one of the worst things for her. She cries and moans which just breaks our hearts! We feel so sorry for her because we try everything that you can think of to help with the teething and it just doesn't help her that much. Thankfully though, teething doesn't last forever and we look forward to the day when her pain from this subsides and she is our happy go lucky baby again!

Some prayer requests:
1) Pray for her effusion to go away for good so that when we remove the chest tube, she will not need another one placed.
2) Pray that her teething pain lessens.
3) Pray for all the doctors, nurses, and other medical staff as they take care of her and all these other precious children each day.

As always, we are so thankful to God for blessing us each and everyday with this sweet little princess!

God is good, all the time. And all the time, God is good!

First Birthday Pics!

2011-10-06T12:34:00.000-07:00

Holding my baby at 8:44am (birth time) since I did not get to last year!

Nana Jana and Aunt Stacey came!

This WONDERFUL lady, Michelle, (with Icing Smiles), made Emma's birthday cakes!

Party decor

Check out the cute cakes!

More room decor!

Waiting on the Pizza!

Emma's birthday chair

Presents

Little red wagon from Gramma and Grampa

Birthday sign that Gramma and I made!

Birthday chair again!

Scarlett (CVICU RN) and Kim (CVICU NP)
These are two, wonderful, caring ladies! We love them!

Happy Birthday Girl!

Opening Presents!

C8 nurses

Cheryl and Cindy
These wonderful ladies are from the prenatal program at Dallas. They are the reason we choose CMC! Love them!

With Cindy and Cheryl!

I am going to get you Mommy!

Silly girl!

Courtney is another one of our CVICU nurses! She is wonderful!
We love her for taking care of Emma post Glenn!

Our Wisconsin nurses Becky and Nate (little Gracie is in this picture too)!
These two mean so much to Scott, Emma and I. Nate and Scott cause trouble in the CVICU at night. Love you both

Wendy the massage therapist! One of Emma's favorite people!

Miss Sarah! One of our lovely night nurses! She is always so caring!

More presents!

Dr. Lemler! Emma's cardiologist! We are so blessed with great doctors.

Dr. Koch! Emma's head Intensivist. He has truly been with Emma through the good and bad days! We cannot not say enough how much we appreciate him! He has also had to hear me vent more than once :)

Chanh (RT)! Emma loves Chanh. They are homies ...lol

Ready for the cake??

Here you go!

Happy Birthday to you!

Digging in!

Yummy!

Beautiful Cake!

Right before I accidently let her fall backwards :(

Taylor (NP), Naomi (NP), and Dr. Clay (Intensivist)
More of the wonderful CVICU team!

FAmily

Estes, Gerth, Stewart family

Our little family!

Love my 1 year old

To My Little Emma: Your First Year

2011-10-05T17:29:00.000-07:00

To my Sister Girl, Sweet Pea, and Punkin’ Head:

A year ago today, I was anxiously awaiting your arrival. I could not sleep knowing that the next day would change our lives forever. I spent hours praying, talking to you, and rubbing my huge stomach. I was so scared for your fragile little body to enter into this world. As excited, as I was to meet you, I was equally nervous about the journey you were about to take.

I will never forget your sweet little face (well, the small part I could see). You had a perfect little button nose and a head full of dark hair. You arrived at 8:44am and weighed in at a whopping 6 pounds and 1.5 ounces. They quickly wheeled you away to Children’s Medical Center and your wonderful Daddy was with you every step of the way. Your daddy is so proud of you! You have been his Precious Princess from day one. You were so sick—sicker than anyone thought. The doctors and nurses worked quickly and diligently that day to help get you to a better place. All the while, I was stuck in a recovery room in a different hospital. My heart and arms ached for you. I hated that you had to go through so much on your “birth day,” but I hated even more that I could not be with you.

Right after you were born!

After your first Cath

Waiting to really “see” you for the first time seemed like eternity. Your daddy did a great job keeping me updated, but I wanted so bad to see, touch, and kiss you. I was finally allowed to leave Parkland to come and see you. You looked so small and helpless laying in your little hospital bed. Tears filled my eyes as I got to really take “you” all in for the first time. You were everything I could have imagined and so much more. I reveled in the opportunity to give you a bath and dress you up in your bow and little socks.

Meeting Mommy for the first time!

First Family Photo!

Beautiful Baby from the outside in.

The days that followed were filled with so very many ups and downs. We soon realized that your journey was not going to be typical or easy. You went in for your first open heart surgery on day two and crashed on day five! I will never forget the sights and sounds of that crazy evening. My heart physically hurt as I watched you through the door. Your room was full of nurses, respiratory therapists, and doctors. I was watching your heart rate and oxygen saturation levels drop to nearly zero. I begged God to let you live and cried out to the team to make you better. No mom should ever have to watch their child crash----those memories will forever be engrained in my memory. You are such a fighter and with God’s help, you pulled through. Little did I know what was to come.

After your first open heart surgery

Changing your little diaper

Love those sweet little eyes!

First time to be extubated!

Right after you crashed for the first time

You went in for the Norwood on day seven. Your daddy and I, along with family and friends, waited anxiously for you to come out of surgery. You actually did very well post operation and it looked like we would be out of the hospital in no time. Boy were we wrong. Your little body had many surprises for us.

Norwood surgery time

Bless your little heart

You were such a brave little girl!

After recovering from the Norwood, your medical care became very complicated. You had problems with chylous effusions (leaking fat from your chest cavity), problems being extubated, problems gaining weight, problems with kidney stones, gastrointestinal issues, eye problems, etc. You had a few more episodes of mucous plugging in which we nearly lost you. We also had a very scary experience with you in which we were within minutes of having to hook you up to ECMO due to uncontrollable heart arrythmias. You had to spend time in a “grow box” because you did not have the energy to gain weight while being able to keep your body temperature regulated. You were also listed for transplant because your heart was not working like it should. We were told at that time that you would NEVER be a Glenn candidate. As you can see, just in this short little description, your road has been very bumpy. But all during this journey, you have had amazing people encouraging you and more importantly, praying for you. You are so blessed to have such wonderful people in your life. All of the surgeons, doctors, nurses, and therapists have worked tirelessly to help you get

better.

Into the Grow Box!

Echo Time!

21 days old and the first time to hold!

Best Daddy in the world!

Getting bigger in the "Grow Box"

Check out all of the tubes and wires!

Boomer Sooner!

Happy Baby!

You were one sick little girl

Day your were listed for transplant

Getting Some Gramma Lovin'

My little Minnie Mouse is getting better!

And get better you did! After almost six month of being intubated, you were finally able to get that nasty breathing tube out. We had so much fun holding you and loving you! You are probably the most loved little girl ever. You improved at a steady rate after being extubated. We were all so very proud of you. We got to move your feeding tube out of your intestines into stomach and start feeding you breast milk. You continued to improve, gain weight, and wean on the amount of oxygen flow you were on. The CVICU team decided that you were ready to move on up to the 8th floor. This was music to my ears. I was so excited because we were told this would never happen until after you got a new heart.

First bath in a bathtub

Family Time!

You smile a lot now!

You got to try cereal

The nurses threw you a 6th month birthday!

You got to go outside for the first time!

You were excited about meeting your little cousin Coen!

You were worn out after moving to the 8th floor!

You were released from the hospital at the end of April. We were so excited to get to leave the hospital and bring you to a “home-like” environment. You really seemed to like the change of pace. You have slept much better and are growing like a weed. You have had a lot of visitors and have been held a lot. You like to play and have even learned how to sit up on your own, roll over from your tummy to your back, and boy-oh-boy do you like to play, especially with anything that makes noise or lights up.

Mother's Day!

Hanging out in the hospital!

Bumbo time!

Visit to the Park!

Father's Day!

Swimming Pool time!

First 4th of July

You were a ROCK STAR after the Glenn

Sitting up on my own!

Emma, you have taught me more in your one year of life, than I have ever learned in my 26 years on Earth. This has been the most emotionally and physically draining year, but more importantly, it has been the happiest, most joy-filled year that I could have ever hoped for or imagined. Your precious smile and laugh melt my heart. I hope you always know how truly special you are to me. You are what I prayed for and in your eyes I see hope! You have strengthened my prayer life and my faith! I love our days spent together. You are worth it all. Remember to always be a fighter. Never give up and remember that you have the biggest fan club cheering you on every step of the way. You are an inspiration to so many. I pray that God blesses you with many more years and that you continue to be a light for Him!

You're Special, You're Special, You're My Special Little Girl

I Love You, I Love You, I Love You Because

God Made You My Special Little Girl

I love you to the moon and back and so much more,

Mommy
Jeremiah 29:11

Update on Miss Emma's Progress

2011-10-01T11:45:00.000-07:00

Well, we were moved up to the eighth floor yesterday. We were a little concerned, and I guess still are, about these pleural effusions especially in regard to coming up to the floor. The day we got moved up to the floor, Emma had to have her pigtail chest tube removed. It had "de-pigtailed" itself and was not going to be effective anymore at draining her effusions. This would have been a great thing to lose if we didn't have effusions still accumulating. The day they removed it, we asked if they would go ahead and put another pigtail in, but they said they would not. So, you can imagine our hesitation in moving up the eighth floor knowing that we had effusions still forming which caused her to desat (her oxygen concentration in her body get lower), previously when they accumulated before the last pigtail was put in. We also had even more hesitation when they said that they would have to bring her back down to get a new chest tube put in, telling us simply that they, "will not do them on the eighth floor." Despite all the hesitation and concern voiced on our behalf, we were still moved up to the eighth floor. So, as you might imagine, last night was a night filled with little sleep as we were constantly watching her monitors and Emma to make sure she was okay.

Today, she woke up in a good mood at 6am to get her xray. We traveled downstairs in a caravan, with Emma in her wagon watching Baby Einstein and Elmo and his ducks, on our phones, while we pulled her and our nurse and tech led the way. Her xray looked slightly better today which is a good thing. They will keep doing xrays on a daily basis to make sure that the effusions aren't getting out of control. If we can keep them off, that would be a HUGE blessing!!!

Dr. Forbess stopped by this morning and talked with us about Emma. As her road always goes, he was amazed with how well she was doing in spite of all that she has going against her. She is a puzzle to him, to all the team. She has always been a puzzle to them; she probably always will be. He wants what is best for her no matter how many things it takes to get there. A trait that, at times though hard to take, is why we are so blessed to have him as her surgeon. He knows her inside (literally) and out, and it is nice that he does. When all the doctors around us that have had her since the beginning come and sometimes act like they have forgotten who she is and what she is capable of, Dr. Forbess, does not forget, does not act like he "doesn't remember her." His cautious optimism is always apparent. And let me just say, that we are so truly blessed that God has given men like Dr. Forbess unrivaled surgical abilities and immerse intelligence! All that being said, Dr. Forbess did state that he is not real sure about what the next step should be for her future. A hard truth to take when all that you want, all that you are grasping for is some sort of normalcy, some sort of definitive answer. But, it is what it is. As this road continues to be laid, please pray that the decisions that are made are what are in the best interest of Emma, and that God will guide all of our hands!

We have started back working with Emma on all of her therapies as being in the hospital is a definite set back to progress that you make outside of here. She did really well with speech therapy yesterday, so so proud of her!!! Today she has been sitting up quite a lot today, a little on her own, some in her Bumbo, and some with help from her Boppy. She is getting stronger each time she does these things! Besides all the therapies, she has been getting loved on by us and the nursing staff up here. She has also been playing with us, laughing, and of course giving us huge smiles! It warms our hearts when she is so strong and happy despite all she has been through. For a child that could be very angry and standoffish among other things because of her past, she is not, what a blessing!

So all in all, Emma is doing well. We continue to look forward to the day that we can leave here and enjoy more time with her outside of the hospital!

Some specific prayer requests:
1) Pray that Emma's effusions go away.
2) Pray that the doctors in charge of her care and us will make the decisions that are best for Emma long term.
3) Pray for Emma to continue to recover well.
4) Pray for us to have strength that can only come from God, as we continue down this road.

God is good, all the time. And all the time, God is good!

And the drainage keeps coming.....

2011-09-28T15:43:00.000-07:00

Emma's procedures went great yesterday! Emma actually overcame a previous obstacle yesterday. She was able to successfully go to the Operating Room and have a chest tube placed and her broviac line removed without need to be intubated. Cardiac Anesthesia was successfully able to keep her sedated and still with a medication called ketamine. This was a huge accomplishment for Emma and we are so proud of her. The chest tube drained almost 70ccs initially (that is over 2ozs). Imagine having that float around in your lungs. Upon arriving back to the room, Emma woke up from the sedation and was a little irritable (probably from the chest tube insertation), so we gave her a pain med which helped a little.

Emma slept great last night and we were able to wean her back down to 2 liters of oxygen flow; however, as the day progressed, Emma started acting very cranky and started having desat episodes again. We had turned her oxygen down to 1 liter today as we thought she could handle it.....needless to say, we have her turned back up to 3 liters and just got an x-ray and chest ultrasound to look for possible fluid on the right side. Her sats have been fine the last few hours, so hopefully she is settling out. We also gave her a dose of pain meds. We don't want her to be in pain, and it is a possibility that if she is, she could be guarding and not breathing like she should (the screaming and crying do not help her sats either). We have not heard from the team yet on if she has fluid building on the right. If she does, we will cross that bridge when we get there.

The plan right now is to start pushing to eat more orally. The team would really like to see her consuming food instead of formula down the NG tube only. We also let her wear her helmet for a little bit today and had her do some prop sitting. Therapists will be restarting therapy this week as well.

All in all, the team is still happy with Emma's status. They would be happier if she was not draining as much fluid, but like Dr. Forbess said, they are not surprised as she did this after the first surgery and her lymphatics are very prominent. We are hoping and praying that she does not need to have the chest tubes long and that her drainage will stop soon.

Next week,, my baby will turn one! What a year it has been! It looks like we will be celebrating her birthday in the hospital this year, but we will be celebrating and that is what matters. Both of the cardiac floors are very full right now. They are talking about sending us to the 8th floor, but we are like number 8 or 9 on the waiting list so we will just have to wait and see.

Prayer Requests:

1. Please pray that Emma's lymph system heals quickly so she can get the chest tubes out.
2. Pray that Emma's sats stay up so we can wean on the oxygen.
3. Pray that Emma tolerates her therapies and continues to progress in her development.
4. Pray that Emma can not be in much pain from the recent procedures.
5. Pray for Emma's heart buddies.
6. Pray for Scott and I was continue on this journey with Emma.

God is good! All the time! God is Good!

Much Thanks to all of you who have helped thusfar with the Hope From Emma's Heart project. We have some really cute things to give to the babies. We would really like all of the items by October 10th.

We have also been helping with a documentary about HLHS: check out the trailer: HLHS Documentary
click on the teaser trailer button, and then the teaser trailer #2 button!

Speed Bump

2011-09-26T19:48:00.003-07:00

Speed Bump

Today presented Emma with a slight speed bump in her road toward recovery. Early this morning (around 2 am), Emma started experiencing momentary desaturation episodes. She would bring her sats back up, but any major cough, throw-up session brought on another desat. Well, Scott and I had a sneaky suspicion that Emma was building up fluid in her chest. The doctors removed her chest tubes yesterday, as they were not putting out much fluid. Well, her x-ray did not show much change and her blood work was fine so they were debating what step to take next. It was decided that they would do a sonogram of her chest cavity and her kidneys…..(side note: Emma had a bloody urine diaper last night too). The results of the sonogram showed a pleural effusion in her left chest area. This explains her desat episodes. Her kidney sonogram looked good.

So, tomorrow’s plan is as follows: Emma will go to the Operating Room (at some point) and have her broviac line removed, her clogged tear duct probed, and a chest tube put in to drain the excess fluid. In saying this, Emma has had a good day overall and the doctors are pleased with her progress. We expected to see pleural effusions post surgery, as this is something she had post Norwood. In order to help Emma with this fluid, Scott and I are taking turns to hold her with her left side up.

Please Pray that:

1. Emma’s procedures go smoothly tomorrow.

2. She can be successfully extubated quickly.

3. Her pleural effusions resolve themselves soon.

4. Her recovery continues to be smooth.

5. Our heart buddies have the strength to keep going.

6. One of our heart buddies: Gracie has many more days with her family or that she can prove the doctors wrong and live a long time.

We are so humbled by the love, support, and prayers. God is Good! All the Time!

P.S. If you have items for Hope From Emma’s Heart, please have them to us by October 10^th!

The Road Ahead

2011-09-25T18:33:00.000-07:00

Let me start off by saying that everyone here is pleased with how Emma is doing! What an answered prayer!!!! :) Now, we are not quite ready to go home yet... She still needs to get this broviac line out since it is a definite infection risk! To do that, however, she has to go to the OR and have one of the surgeons remove the line. Since this has to be done, we are going to have them probe her clogged tear duct in her eye so that we don't have to do that at a later time. They have not set a time for this to all occur but it will more than likely be sometime early this week.

Emma got to have her chest tubes removed today. They were no longer draining enough to be left in. She also got her pacing wires removed during this as well. We even got the okay to take her temp probe and two sensors that monitor oxygen sats off. So, lots of things removed from her which no doubt make her feel better, but make it even easier to hold her and play with her!!!! ;)

All in all, she has had a really good day with lots of smiles, lots of play time, and holding time. We look forward to the days ahead as she continues to recover!

Some prayer requests:
1) Pray for Emmas upcoming trip to the OR, that it goes smoothly and they are able to achieve everything they set out to do.
2) Pray Emma continues to recover each day.
3) Pray for the doctors, nursing staff, and all the staff here at Childrens as they take amazing care of Emma!

As always, we give the thanks to God who continues to richly bless our family each and everyday. God is good, all the time. And all the time, God is good!

Scott, Emma, and Gramma! Learning how to give Emma's shots.

Hi, Grampa!

Two Peas in a Pod :)

Fat free diet again :(

2011-09-23T20:31:00.000-07:00

Well BOO :(. It looks like Emma is getting chylous effusions back! Fat free formula is on the menu tonight! Please pray that her lymph system heals quickly!

Fabulous Friday

2011-09-23T17:37:00.000-07:00

Fabulous Friday

Today has been another good day for Miss Emma. They removed her intracardiac lines today which means--------WE GOT TO HOLD HER! They are switching all of her meds to PO (by mouth, or in her case by NG tube).

They also split her chest tubes to see which side is draining the most. This will help them determine if and what side chest tubes they can pull out. Her drainage has slowed way down, which is a good thing.

It seems that her incision site is beginning to itch. Emma has really tried to claw at it today so we have spent a lot of time keeping her preoccupied with toys, books, and Baby Einstein.

They are telling us that more than likely, they will take Emma to the OR on Monday to remove her central line. Her central line stopped working the Saturday before her surgery and is an infection risk if left in. They are also trying to work out a plan with Ophthalmology to probe her clogged tear duct at the same time. While we are not 100% certain this will happen, please be praying that if it does she will do well through it and will be able to be extubated quickly. We hate that she has to be intubated so soon, but know that this needs to be done.

Prayer Requests:

1. Please pray that Emma continues to recover quickly and fully.

2. Please pray that Emma’s upcoming procedures are smooth and without complications. Also, that Emma can be extubated quickly afterwards.

3. Please pray that Emma is as pain free as possible.

4. Please pray for the doctors, surgeons, and nurses in charge of her care.

5. Please pray for our fellow heart buddies. There are some families we know that have not gotten great news this week and could really use our encouragement and prayers. I will say pray for baby “G” and her family.

As always, we love and appreciate the support and prayers. We are truly blessed.

God is Good! All the time! God is good!

Family Time!

Love our Daddy!

I will get you with my foot Gramma!

Playing with Mommy

Update on Miss Emma

2011-09-22T17:08:00.000-07:00

Miss Emma slept well throughout the night. She did wake up a couple times wanting to be entertained ;), but all in all, she had a really good night. We have been greeted with many big smiles today which is a good sign that she is feeling better. She has also played more today with all her many toys that we brought with her. It is really good to see her in such a good mood! Often these babies will have migraine headaches following the Glenn but for Emma, she seems to be doing fine and if she is having them, they are not really bad which is an answered prayer.

The doctors are also very pleased with where she is at clinically. They said earlier, during rounds, that our plans would be pretty simple, ween on her oxygen support and continue to feed while also removing intracardiac and other IV lines when able. Also, chest tubes will be removed when able. Today, we have weened down on her vapotherm support from 8 to 6 liters. We have also continued her feeds and restarted some other medications she was on at home that we had not restarted yet. Our plan for tomorrow is to remove the intracardiac lines which is a good thing because it means she will get to sit in her bouncy and have some fun!! :) Also, they are planning on decreasing the flow of her oxygen again. All good things, so pray that we are able to do those things and any other things tomorrow that will continue to help with her recovery process.

With all the uncertainties that we had yesterday, it made today, a day filled with much more fun and happy moments, very enjoyable. As we continue down this road to recovery, we continue to ask you all to keep little miss Emma in your prayers. Lord willing, she will continue to do well through this recovery phase, and we will be able to leave soon and, go home.

God is good, all the time. And all the time, God is good!

Today's Wrap-up

2011-09-21T21:10:00.000-07:00

Wrap-Up:

Today started out being very eventful for Emma. Emma was retaining a lot of fluid, was very swollen, and was fairly irritable. These things coupled with a lot of congestion caused Emma to have a rise in her lung pressures, and an increase CO2 retention. The team debated back and forth whether or not it would be a good idea to send her to the Cath lab for further evaluation. After much debate, two echos, and bilateral chest x-ray, and fluoroscopy, it was decided that her echo looked good and the stint in the left pulmonary artery looked intact. Therefore, the team decided to hold on the cath unless it became absolutely necessary. YAY!

Emma is also “waking” up from the sedation and is becoming more aware of her pain. She desperately needs to cough to clear the mucous in her upper airway, but it obviously hurts her to do so, so all she does is a very wimpy cough and subdued sneezes.

The doctors are being aggressive with the diuretics to help keep Emma from getting so puffy and fluid overloaded. They started feeding her again tonight which she is tolerating well. They also took out her IJ (neck line). This is way more comfortable for Emma. The last piece to their plan right now is to wean the Vapotherm a little more tonight.

All in all, Emma has turned this day around and was extremely happy this evening. She was playing, laughing, and cooing at us trying to get our attention.

God is Good! All the Time! God is Good!

Prayer Requests:

1. Please pray that Emma can keep the fluid off

2. Pray that Emma can keep weaning on the Vapotherm

3. Pray that Emma can tolerate her formula and that her chest tube drainage slows down.

4. Pray that Emma continues to move forward and recover

5. Pray that Emma’s pain is minimal.

6. Pray for her Surgeons, Doctors, and Nurses caring for her.

7. Pray for her Heart buddies (some of them are having a very difficult time)

Worn out Emma this morning

Happier Emma tonight!

Brief Update

2011-09-21T12:31:00.001-07:00

So far, emma's echo looked fine (which is good). Her pressures are not as high as they were this morning! Now we are dealing with her being aware of more pain and she is congested but won't cough it up because coughing is very painful for her. They are about to take her to get a picture of her left pulmonary artery! Please pray that things continue to look good!

Prayer request

2011-09-21T04:03:00.001-07:00

Please keep praying for Emma! Her pressures are still up and her oxygen sats keep dropping to low 70s, then they will come back up to high 70s/low 80s, then back down again. We are waiting on her surgeon to get here for rounds to decide what to do!

Update on Miss Emma

2011-09-20T10:08:00.000-07:00

Emma had a pretty good night. Woke up several times, restless, and needing us by her side. So, not a whole lot of sleep for any of us really but no major problems, which is great! Today, she is a little more alert but is again, restless. Her blood gases (oxygen, CO2, etc.) have normalized back out. She is on Vapotherm still, but they are weening it down. The doctors are overall pleased with her progress that she is making.

We have been able to get a few smiles out of her this morning. She is still very groggy though so we have to be persistent in entertaining her to get those smiles. But we all have sang together, read books, laughed, talked, and of course, given lots of kisses.

All in all, she is doing good for all that she has been through. Continue to pray for her post-op t, that it continues to go smoothly and she continues to to improve.

The plan for today is to ween her Vapotherm from 15 liters to 12 liters and see how she does. Also, they are going to pull out her foley catheter and start up her feeds and meds again. Hopefully she will tolerate everything well.

Thank you all for the continued thoughts and prayers!

God is good, all the time. And all the time, God is good! We give thanks to Him for the progress that she is making and has made!

Evening Update

2011-09-19T21:37:00.000-07:00

Emma has had a good day overall. We are dealing with a few issues right now that are preventing her from really making it over the "hump" so-to-speak. Emma has run a fairly high temperature since coming back from surgery. It got up 103 this evening. It is back down to 101.6 which is better but not great. We are giving her IV tylenol and toradol to try to control it. They believe it is from inflammation from the surgery.

Good news is that we were able to take her breathing tube out today. However, she is still not fully awake, so we are having to give her extra support in the form of Vapotherm (or a high flow nasal cannula). She is on 15 liters at 100% oxygen right now. Our goal is to try to get her to wake up more then start weaning her as she can tolerate.

Emma is in a lot of pain and is easily agitated. We can't give her much for the pain because it will make her too sleepy and she will not breathe appropriately. She flails her arms and feet around a lot. We have to really watch her because she has so many lines, IVs, drainage tubes, etc. that we do not want her to pull any out on accident.

The plan right now is to keep checking her blood gases to make sure she is blowing off enough CO2, try to get her temp down, keep her as comfortable as possible, and hopefully restart her feeds in the morning.
We appreciate the continued prayers. Emma has really had a pretty good day overall, but the next few days will be hard on her.

God is good! All the time! God is Good!

Daddy and Emma after extubation!

Mommy and Emma

Update on Miss Emma

2011-09-19T20:59:00.000-07:00

We are in our ICU room. She got in here around 12:10 pm and got all prepped and ready for us to come back. Around 2 pm, we were able to come back here and be with her. She is doing good and is trying to wake up as I type this update. With all of her pain/sedation meds, it is taking her a little while to wake back up. They are hoping that she will wake up soon so that we can extubate her and get her progressing quickly down this road to recovery. We will keep everyone updated as this day continues with the progress that Emma is making. Continue to keep her in your prayers as she goes through this recovery phase, that it is a successful, quick, recovery.

Also, for all those praying out there, Emma is running a temperature which is not helping her recover. Please pray that the fever goes away quickly!

My precious little girl

God is good!

Dr. Forbess Update

2011-09-19T10:02:00.000-07:00

Dr. Forbess just came by and talked with us. He reaffirmed some of the things that we had heard from the staff earlier. He stated that her pressure was a little elevated above normal and that we would just have to watch how it affects her. He stated that she only had to be on bypass for 39 minutes which is really good (and fast!). He also said that her sats were good, in the mid to upper 80s. He said that if anything looked concerning or for some reason they could not get her extubated quickly (within 24 hours or so), that they would more than likely take her to the cath lab to see if they could find anything. We are praying that she extubates quickly (and stays extubated) and that her overall post-op recovery is quick and smooth!

Thank you all for the continued prayers!

Update Number 3

2011-09-19T09:21:00.000-07:00

Emma's surgery is DONE! Emma is off bypass and doing well. Dr. Forbess decided to not mess with her pulmonary arteries right now. She is requiring 100% oxygen which is to be expected right now. One of her heart pressures is a little elevated. They expect it to be around 14 and Emma's is 17, so not elevated much. Our cardiologist said he kind of expected Emma's to be slightly elevated. We are waiting to talk to Dr. Forbess and will know more details at that time. The good news is that things went well and she is off of Bypass. Please keep praying that her post op is smooth.

Right before surgery

Second Update on Miss Emma

2011-09-19T08:54:00.000-07:00

We received a phone call a couple of minutes ago that everything was still going good. She has been put on bypass and they were working on removing her sano shunt and proceding with the Glenn procedure. Please continue to keep Emma, the doctors, nurses, and all medical staff in your prayers. Thank you!

God is good, all the time. All the time, God is good!

Showing us her new accessory last night :)

First Update

2011-09-19T07:17:00.000-07:00

Emma is doing good. They were able to open her up without any complications. She is not on bypass machine yet, but that is what they are working towards now. Thank you for the prayers and please keep praying for our little Princess.

Looking Stylish for Dr. Forbess

Emma is in Surgery

2011-09-19T06:29:00.000-07:00

Emma went back for surgery around 7:45am! Emma had a good night and rested fairly well. Her central line has stopped working...:( so she will need to have several PIV lines put in today. They put in one PIV last night and Emma did not even cry. She is such a big girl. The surgery should last between 4-6 hours. We will update the blog as we are updates which should be around every hour or so. Please remember that our blog is the ultimate reference point on how Emma is doing.

Prayer Requests:

2. Please pray that Emma’s surgery and post op recovery are smooth.

Pl Please pray that Emma's surgery goes great and there are no complications.

P Please pray that Emma's heart can stay arrhythmia free.

3. Please pray for the surgeons, doctors, and nurses that will be caring for Emma.

4. Please pray for peace for Scott and I.

5. Pray for Emma’s other heart buddies.

Scott and Sarah

God is Good! All the Time!

Silly baby would not sit still for the picture! :)

Check out her "helmet hair"

Getting some lovin' from Daddy!

It only took one nurse for transport this time! Way different than the Norwood! Be strong baby girl!

Countdown...Again..Also Hope From Emma's Heart

2011-09-14T10:46:00.000-07:00

We are once again in the countdown to Emma’s Glenn. The Glenn will be performed on Monday, September 19^th. Emma will be the first case. Scott and I humbly ask for your prayers as this surgery nears. It will be very hard to send Emma into this surgery. Although we know she desperately needs it, we also know how difficult surgeries are on our little Princess. In recent talks with the doctors, we have learned that Emma will be one of the oldest Sano shunts (if not the oldest) going into this surgery. In true form, our little Emma is not doing things like normal. We like to think that she is extra special.

We are starting to get fun and adorable items for the Hope From Emma’s Heart organization. We are so excited to see this project come to fruition. We thank each and every one of you from the bottom of our hearts for the monetary gifts and the baby items given to help with this project. If you are planning on helping with this, please have all of the items to us by October 10^th. If you have any questions, please let me know.

I think a lot about what these next few weeks will bring for our family. What will Emma have to endure, what decisions will Scott and I have to make, how much pain will she be in, etc. I have spent much time in prayer about this and truly put it in God’s hands. The song below, written beautifully by Matt Hammitt, expresses so many feelings that I have felt. I sing this to Emma almost daily when we have our “hold me” time. Emma will have all of me---regardless and I am truly treasuring all of these precious moments that I have with her. Please take a minute and give God thanks for all that he has given you. We are blessed people ultimately because (John 3:16) God gave us the ultimate blessing.

The following lyrics are from: All of Me by Matt Hammitt (a fellow HLHS parent)

I won’t let sadness steal you from my arms 

I won’t let pain keep you from my heart

 I’ll trade the fear of all that I could lose

 For every moment I’ll share with you

You’re gonna have all of me 

You’re worth every falling tear 

You’re worth facing any fear

You’re gonna know all my love 

Even if it’s not enough

 Enough to mend our broken hearts 

But giving you all of me is where I’ll start

I am going to ask a special request for some fellow heart buddies. These precious children and their families need our prayers as they are on a very bumpy course right now. Please pray for Keegan, Brooklyn, Scarlet, Rylynn, and Leah. We have not met all of these families in person, but are connected through blogs, Facebook, and other heart families.

Prayer Requests:

1. Please pray that Emma can stay infection and virus free

2. Please pray that Emma’s surgery and post op recovery are smooth.

3. Please pray for the surgeons, doctors, and nurses that will be caring for Emma.

4. Please pray for peace for Scott and I.

5. Pray for Emma’s other heart buddies.

Sarah (Emma's Mommy)

God is Good! All the Time!

Also, please remember to check the blog on surgery day as that is where updates will be.

Mesmerized by the OU game. ;) Boomer!

Watching the game with Gramma and Grampa!

The Look-a-likes!

Making funny faces at Great GP

Our beautiful baby girl!

The New Plan............For Now Anyways!

2011-09-02T08:41:00.000-07:00

As many of you know, Emma was brought into the hospital last week due to an unexplained emergency situation. Well, we still do not know what happened and probably never will. In pure Emma style, when testing for infection, all of Emma’s tests came back negative. She was obviously exhibiting signs of some infection (cough, on and off low grade fevers, yucky looking chest x-ray, etc.); however, in the doctor’s words, your daughter NEVER does anything by the book. Poor Emma, she is only 10 months old and already has a reputation for being difficult. At least she is ADORABLE while being difficult. HA HA! The doctors ended up treating Emma for an A-typical pneumonia. She improved and was sent home. On a positive note, Emma’s eye infection seems to be all gone.

So, what is the new plan? The new plan is to do the Glenn on September 19^th. We know that Emma will not be an easy Glenn; however, we hope and pray that this surgery will be successful for her. What is really hard with Emma is that she has never really fit into any mold, so it is like going into uncharted territory. It is so hard to take Emma into another surgery knowing how difficult her past procedures have been on her. We do this in hopes that Emma be able to avoid transplant for a while. She makes us all a little nervous, but she has proven that she is a fighter therefore; we continue to fight for her.

Prayer Requests:

Please pray that Emma can stay infection free until her surgery.

Please pray that Emma’s surgery is successful.

Please pray that Emma’s post op is smooth.

Please pray for the doctors, nurses, etc. that will be taking care of Emma.

Pray for all of Emma’s heart buddies.

God is Good! All the time!

Sarah (Emma’s Mommy)

P.S. Please consider helping with the Hope From Emma’s Heart organization!

God is Good! All the Time!

Update on Miss Emma

2011-08-27T17:04:00.000-07:00

So it has been a crazy past couple of days. We are now on the 8th floor which means Emma has improved from the initial journey here. We do not know what caused her episode on Wednesday, but the doctors do think that she has had some type of infection. Whether viral or bacterial, they are unsure. Her x-ray, however, does look like she has or had an infection. She has been put on a couple of antibiotics in an attempt to treat the infection(s) and improve her x-ray. Her labs and all of her numbers continue to improve. So now, we are in the waiting game. We are waiting to see if these antibiotics improve her overall condition. Also, we are waiting to see what will be the next step to get her closer to surgery. She is still a very happy baby, smiling often and playing like normal. She is still coughing quite a bit, but it has definitely decreased over the last 2 days. We are definitely thankful that she is still a happy baby through all of this, which makes this whole road a lot easier. We will continue to keep everyone updated as we find out more information.

Some specific prayer requests:
1) Pray that Emma gets to feeling better and that her infection is healed quickly.
2) Pray for the doctors, nursing staff, and other medical staff as they tend to Emma, that their hands and thoughts will be guided to make the right decisions.
3) Pray for Sarah and me to have strength for the road ahead.

Thank you all for the thoughts and prayers.

As always, we are most grateful for God who continues to bless and watch over our precious little girl.

God is good, all the time. And all the time, God is good!

Daddy Scott

Back to our home away from home the ICU

2011-08-25T09:39:00.001-07:00

We went to the hospital early Wednesday morning because Emma was running a fever! We were admitted to the 8th floor and monitored. Ran some tests, fever came down, nothing seemed wrong so we were sent home yesterday early evening! We gave Emma her bath and I went to bed( I have been taking the night shifts). Scott came and got me a few minutes later to come look at Emma. Emma was VERY blue, modeled, lethargic, and unresponsive! We turned up her oxygen as high as it would go and called 911. We were rushed to CMC in Dallas! I was never so happy to see the Koch and one of our nurses Robin. Emma had pinked up by the time we got to the ER. However, after running several tests, it was determined that her CRP and white blood cell count are elevated so more than likely, there is an infection somewhere. So, she has been started on two antibiotics.

Emma is stable, but our road over the next few weeks will be bumpy! Emma is growing out of her shunt and may have to have an intervention done before surgery. Please be praying that The decisions made over the next few days will be beneficial and best for Emma! Pray the infections leave her little body and she is infection free soon!

Scott and I are both physically and emotionally drained and could use you prayers as well!

We will update as we learn more!

God is good! All the time!

Sarah :)

No Surgery Tomorrow

2011-08-21T12:30:00.001-07:00

Well, surgery is a not going to happen tomorrow! The eye culture grew back Haemophilus influenzae infection, so Dr. Forbess wants it treated for 5-7 days first. We will keep everyone updated. Thank you for the prayers and please keep praying.

The Road Ahead

2011-08-14T11:27:00.000-07:00

Hello to all. It seems like months since I have been on here and updated this blog. So, let me see if I can loosen up my "hinges" posting and give ya'll an update on my precious little princess and the road ahead. First, let me just ask for all of your help in praying for Emma's next surgery that is on the 22nd. Pray that it is a success, pray that the doctor's hands be guided by God, and pray that her recovery is quick! Second, let me ask for all of your help again. As you know, Emma is getting very close to her next surgery, and so, as many of you might have seen on Facebook, Sarah and I are asking that there be no visitors from now until her surgery. There may be some that were planning on seeing her, but with her going into surgery, she needs to be as healthy as possible. So, if you could all please honor that request, it would be much appreciated.

Now to an update on Miss Emma. She is doing so good! As many of you might have seen from the pictures and videos that we post, she is getting so strong, and is progressing so well with her therapies. She never ceases to amaze us! Now, as many would imagine, there are days where her stubborn side comes out and she just resists us working with her (don't know who she gets that from :-P ), but all in all, she is doing so good with all her work that she has to do. What is so hard for us, is seeing how great she is doing and remembering that we have to take her in to surgery in a week! What we constantly remind ourselves is that this will be so good for her. It will open up many doors to her future if it goes well. So we are constantly in prayer that all will go well and she will be back to her normal smiling and laughing self as soon as possible after the surgery.

As some may know, we had a short trip to the hospital yesterday through this morning. Emma was just not acting like herself yesterday. She had not slept well the night before and was coughing and gagging a little bit more than normal. So Sarah and I made an executive decision, called Childrens, and got her admitted to the 8th floor. When we got there, we were greeted by great people who make our experience there the best it can be every time we go! A special thank you to all the staff on the 8th floor for always being there for us and always being so kind to us! So, once we got settled in, they decided to run some lab tests on her and see if she might be a little sick. They ran some blood and did a urine culture. We found out that nothing was growing back on any of them (that means no bacteria was showing up in those samples). After she got a great nights rest last night and woke up more like her normal self today, and with the information above coupled with the fact that she was not symptomatic for an infection, they decided to send us home this morning! They want to get you in and out as fast as possible as a lengthy stay increases infection risk. Praise God that she did not have any bad infection! So, we are back at home now and she is as happy as ever! :)

So this week is pretty status quo. We are just going to be working with her in therapies this week and enjoying every second we have with her. We will have to go in Friday and get the whole work up before her surgery next week. Probably on Sunday, we will be admitted to get her in the best state possible to go in for surgery. Still haven't heard officially though whether or not we will have to go in Sunday or Monday.

As always, we are so thankful for all the thoughts and prayers as we get ready for the road ahead. We will, just as we did in her first surgery, only be updating everyone through the blog. So if anyone has questions about her progress, be sure to direct them to the blog on that day as we will not be answering phone calls or texts that day so we can focus fully on our Precious Princess.

For all those prayer warriors, here are some things you can pray for:
1) Pray Emma's surgery is a success!
2) Pray for the doctors and medical staff.
3) Pray that Emma's recovery is quick!
4) Pray for Sarah and me as this is a very scary and unsure time.
5) Pray that Emma will remain infection free and go into her surgery in the best state possible.

Hope From Emma's Heart: An Organization to Honor HLHS Babies

2011-08-05T14:58:00.000-07:00

Hope From Emma’s Heart

Family, Friends, & Prayer Warriors:

We have been truly blessed to have so many wonderful family and friends supporting us every step of the way of Emma’s journey. Whether we needed food, laundry done, supplies, bows J, encouragement, or especially prayers, you all were there. However, there are many families that do not have that support.

We would like to begin early with Emma in teaching her how to give to those in need, so we are starting an organization called: Hope From Emma’s Heart. This organization will collect items to put in care packages for babies in the Cardiac Intensive Care Unit in Dallas with Hypoplastic Left Heart Syndrome.

How can you help? We will be collecting the following items to put in care packages for the HLHS babies. All items must be new!

1. Blankets (receiving) for boys and girls

2. Newborn socks for boys and girls

3. Johnson & Johnson Baby Bedtime Lotion and Body Wash (15 fl oz)

4. Wash cloths for boys and girls

5. Pink or blue gift bags (medium size)

6. Pink or blue baby mittens

7. Walmart or Target Gift Cards

8. Money for special bows/headbands for the little girls and caps for the little boys

that we are having made! (We are going to have special bows made for the girls and caps made for the boys, so if you want to help with this then monetary donation would be the best route)

Each care package will include a special note about Emma and the love and support we have been shown. We pray that this little package will be uplifting to the families as they go through the journey of mending their baby’s heart.

If you would like to help it would be greatly appreciated. This would be a great service-learning project for a school or business organizations J. We will deliver the packages to Children’s Medical Center around Emma’s first birthday (October 4^th). I have a goal of 15 packages for girls and 15 packages for boys! I have no doubt that our wonderful family and friends will help make this possible.

Address to send monetary gifts or package items:

Sarah Stewart

13710 CR 3660

Allen, Ok 74825

If your school or business organization would like to collect items, we could possibly arrange a pick-up in or around Ada, Oklahoma City, or Dallas.

Thank you again,

Scott, Sarah, and Emma Stewart

We have been so blessed! Please consider helping us shower other families with blessings to help celebrate Emma’s first birthday.

My Chunky Monkey

2011-07-22T10:38:00.000-07:00

Look, I am sitting up all by myself! YAY! Even though it was just for about a minute, we a so proud!

I am so sorry that Scott and I have neglected the blog lately. Truth be told, we have been enjoying our time together as a family, and we know that our loyal blog followers respect that and understand how LONG OVERDUE this is for us.

Emma’s Progress:

Emma is WONDERFUL! She is getting quite the personality. She is smiling and “laughing” so much. I put “laughing” in quotations because; she only makes noise part of the time. She loves to be sung to, played with, read to, rocked, taken on stroller rides, and praised. She gets so excited when she accomplishes a new goal. And speaking of goals, she is meeting new ones everyday. Her occupational therapist told us yesterday that we are going to have to set new goals for Emma because she has met all of her original ones. Emma is: transferring objects from hand to hand, reaching up, out, up and across, rolling from her stomach to back, “almost” sitting on her own, grasping and holding on to objects for a long time, interacting with her surroundings, rolling to her sides, and on and on! Everyone is very happy with her progress. Emma is now 66 and 3/4 cm long and weighs 8.035Kg. For those of you who have not been around these types of measurements, she is about 25 inches and 18 pounds!

Doctors, Doctors, and More Doctors:

In the past few weeks we have seen: ophthalmology (eyes), nephrology (kidney), orthotics (helmet), cardiology (heart), pediatrician, and will be seeing neurology (brain) this next week. Here is the short version of all of her appointments. Ophthalmology: They still want to do tear duct probe and eye muscle surgery on the left eye. Scott and I are not totally on board with the eye muscle surgery yet and are looking in to other options. We know she needs the tear duct probed because we have been “working” on it basically since the day she was born and it is not much better. Nephrology: We met with a new nephrologist at CMC and were quite impressed with her. She took Emma off one of her meds because Emma’s urine was actually too alkalotic (not acidic enough). We will be following up with her more post Glenn to watch out for kidney stones. Orthotics: After being lied to about Emma’s helmet (don’t even get me started), this Mama got everything arranged. We met this the helmet company and will be receiving Emma’s helmet next week. This will help with her misshappened head and overall neck tightness. Cardiology: Emma’s cardiologist is very happy with her progress. He has been impressed to see how interactive she is becoming, how strong she is getting, and how good she looks. He told us this week that she might be gaining too much weight…lol. After being FTT (Failure to Thrive) for so long, we will take the major weight gain. We do know via heart echo, that her shunt is getting smaller (this normally happens between 3-6 months of age), but we are monitoring her closely. Hopefully we will not have to do the surgery sooner, but if we do, they are prepared. Pediatrician: Cardioldy wanted us to see a general pediatrician. We are seeing one, who is very nice. She was also impressed to see how well Emma was doing considering all she has been through. We were already caught up with our vaccines, so nothing new there. Neurology: As many of you know, Emma is missing her corpus collosum, so we have a follow-up with neurology next week to check on Emma’s progress. I think they will be pleased!

In the Near Future:

Well, that about wraps up our recent events. I can’t believe our little Princess is almost a year old. I am busy planning her 1^st birthday. Keep watching for details as we are planning a special “giving back” organization called Hope From Emma’s Heart. We will be asking for everyone’s help to make this a success for babies with HLHS at Children’s Medical Center. It will be an opportunity to show Emma every year on her birthday that giving is important as she has had so many people give to her.

Prayer Requests:

Please pray for Emma’s upcoming surgery (August 22^nd)

Pray that the surgeons, doctors, nurses, etc. have the wisdom and knowledge to take care of Emma.

Pray that Emma’s post op is smooth and short.

Pray that Emma continues to develop, grow, and meet milestones.

Pray for all of our heart buddies. Some of them really need our prayers.

Pray for Scott and I. We know this next surgery is necessary, but are not looking forward to handing our baby over again.

God is good! All the time! God is good!

Much Love,

Emma’s Mommy (Sarah)

Emma and her future Father-in-law :)

Emma and her future Mother-in-law :)

Happy Fourth of July

Before Fireworks

During Fireworks

Red, White and Blue

Aunt Stephanie and Soon to be Uncle Aaron!

Play Time with Mommy!

Uncle Tom Tom getting some Emma Love

The What Ifs and Waiting Games....

2011-07-02T09:33:00.000-07:00

Where do I begin…… So many things are going through my mind right now. I have had some days lately where I have to remind myself to take a deep breath and smile. Don’t get me wrong, I love being a mom to Emma. She is beautiful, strong, brave, funny, and brings so much sunshine into my day. However, we are under CONSTANT scrutiny. If one lab is off, if her sats are a little lower, if she doesn’t gain weight one week, if her x-rays look off……then more tests have to be done and more ifs are added to the equation. I think Scott and I would be lying if we said that this is easy. It is NOT easy. Sleep---what sleep??? ;) Our days are so busy with therapies, medicines, treatments, etc.

We are in a way, living on the edge right now. Although her surgery is scheduled for August 22^nd, her oxygen saturations are what we are depending on. If her oxygen saturations drop then surgery will have to come sooner. Typically, the Glenn is done between 3-6 months of age. They are “asking” Emma to wait until she is almost 11 months. My “mommy gut” does not think that her shunt will last that long, but we will see. Her oxygen saturation levels have been slowly trending down, so time will tell. So, we are in the waiting game once again.

During this time, I am also trying to prepare for my PhD Quals and Scott is prepping for his Texas Pharmacy license test, so we are staying busy.

Well, enough of the “what ifs” and negative attitudes. I am sure that none of you want to read too much about that. Instead, you are probably curious about our sweet little Emma and how much she is growing and changing. I am more than happy to tell you all about it.

Emma constantly amazes us. She is full of so many smiles and laughs. She loves interacting with us and is getting pretty spoiled rotten. One of the cute little habits she has picked up happens during therapy time. Whenever she does something really good and gets praised for it, she looks up at Scott and I and just smiles so big. I guess she is as proud of herself as we are. She is getting stronger and stronger everyday. She can sit in her Bumbo chair for about 45 mins. She can fully extend to reach whatever she wants. She can pull, tug, push, etc. Her range of motion is so much better as is her tolerance to tummy time. She is still not putting much weight on her feet, but the therapist is not concerned with this right now.

We are enjoying seeing her change a little everyday. And, her little smiles make it all worthwhile. She weighs around 16 pounds! She is my little chunky monkey!

*******Small Addendum:

I was about to post this when I got a call that they wanted us to be admitted to the hospital to make sure that the recent (small) increase in oxygen wasn’t caused by anything major. They ran many tests and did not discover anything big, so they sent us home on Friday.

Prayer Requests:

1. Please pray for Emma’s upcoming surgery.

2. Pray that Emma’s recovery will be smooth and short.

3. Pray that Dr. Forbess and his team that they will have the wisdom and knowledge to perform the surgery at the right time.

4. Pray that Emma’s saturation levels stay good until the surgery.

5. Pray that Emma continues to develop and get stronger everyday.

6. Pray for Emma’s heart buddies. There are several of them that need extra prayers right now.

God is Good! All the Time! God is Good! He gives us the strength to make it through these storms in life.

Much Love and Thanks,

Sarah (Emma’s Mommy)

Fun in the sun!

Oh no, We have been caught...;)

Small hospital stay!

Rise and Shine!

The Latest News

2011-06-04T21:35:00.000-07:00

So Sarah and I were talking tonight and both came to the realization that neither one of us had updated the blog in a while with all the latest news on Emma. So here it goes. Emma is back at home again. She went into her cath procedure on the 27th to find out more information as to what our plan would be for the future (whether we would go Glenn Procedure or heart transplant.) Sarah and I were really worried because we knew the cath would be long and she would have to be reintubated (breathing tube put in) to do the procedure. As many of you are aware, it was such a struggle getting her off of it the first time that we were very scared and worried about her having to have it again and then her being able to come off of it. Also, we were concerned with how long she would have it if she could not come off. So, she went into the cath procedure on the 27th of May at around 7:30am and did not get done till around 1 pm. So she was in the procedure for over 5 hours. A very long cath procedure but Dr. Nugent had a lot to do when he was preforming it. While he was in there, he ballooned open the stent in her left pulmonary artery bigger to make it anatomically more like her right pulmonary artery. If you remember, this left pulmonary artery was very small in comparison to her right pulmonary artery until he put a stent in it. It was very very tricky to put a stent in the first time because he was unable to use a guide to put the stent in. Without a guide, he basically had to manipulate the stent by hand which can be very hard to do. The reason he could not use a guide is because Emma would go into something called heart block every time he would slide the guide through her Sano shunt (which is the initial connection made during the Norwood to enable blood to flow to her lungs to be oxygenated). Nevertheless, as good as Dr. Nugent is, he successfully put the stent in the first time and she benefited greatly from that. This time, his focus was to enlarge it to make it even closer in size comparison to her right pulmonary artery. This took some time as again, when he would pass through her Sano and start to balloon the stent (make it bigger), she would go into heart block. He said she went in and out of it around six times or so when she was in there. (Very scary for us to hear by the way!!) But, he was able to get it closer in size, which was really good! Some of the other things that he did when he was in there was evaluate her pulmonary veins to look for any stenosis (narrowing/closer/obstruction), assess the function of the heart, take measurements of pressures while he was in the heart, and many more things. So the results, everything looked really good. Better than I think any of us expected! (Praise God!) And they think that right now, she is back on the path of being a Glenn candidate!!!!!! Now in saying this, we know that there are chances that this will not be a straight forward in and out Glenn like many other hypoplastic left heart infants go through. Emma still has some things that could make her recovery time longer than normal. But, the fact that we are doing this procedure is an answered prayer from God! So, when? Well it will probably be in a few months. As for right now, Dr. Forbess sent us home on oxygen to aid in her recovery and put her in better shape for the Glenn. But it will more than likely be in a few months. There is really no set date because it all depends on how miss Em is doing. So in the mean time, while we are waiting, we are just enjoying being home with our sweet little princess and trying to get her caught up on all the things that she is behind in. Being intubated for as long as she was made her developmentally behind as many could imagine it would. Emma, when she was extubated would have been on the same level at 6 months as more than likely a 2 month old. Does she roll over yet, not yet (well she will roll over sometimes from tummy to back if really mad). Does she stand up with support yet, not yet (just like rolling over, she will put weight on her legs only when really mad). Does she eat from a spoon, not yet. Does she do many things an 8 month old should do, not yet. But, she is here and that's what matters. You know when I thought about her being that far behind it almost seemed like an ominous task to get her caught up. But we are trying our very best daily to work with her and make her do more things like an 8 month old should be able to do. But, in the great scheme of things, being a little behind because she was intubated, and in the hospital, while going through surgeries and many other painful events, pales in comparison to her being here. We are truly blessed to have had this time with our child that would have been stripped from us if it wasn't for God and Him working though the great people at Childrens! We look forward to the day when we can show Emma her journey, the ups and downs, the scary times, the happy times. And we look forward to her being able to share what all amazing things God and so many people have done for her in her life!!

We don't know what the future will bring, and that is scary. But we look back at all that we have gone through and we see how amazingly strong Emma has been. As I have said to many people before, Emma has taught me more in the time she has been here than I would have ever learned on my own. Lessons about the truly important things in life and the blessings that I would so often overlook. Thanks be to God for watching over her and us through all of this!

A very special thanks to all the doctors, nurses, respiratory therapists, etc. at Childrens for watching over Emma with such care and expertise, over the time we have been there! You are all truly amazing!

So, until we go in for the next surgery, we are here in Dallas, playing with Emma, laughing, having somewhat of a "normal" life. We will try to get on as often as we can and update with pics and videos of Miss Em (Our Precious Princess) and her hilarious things she does and the progress that she is making.

Some prayer requests:
1) Pray for her next surgery. That it is a success and her post op goes very smoothly!
2) Pray for the doctors, nurses, and all the staff at Childrens.
3) Pray for Emma to continue to make progress in her development and to do better each day at home.
4) Pray for Sarah and I to continue have strength for the road ahead.

Thank you all for the prayers, thoughts, and help you have all been! I hope you all know how much of a blessing you have all been to us through all of this!

Daddy Scott

Emma getting ready to go to the cath lab.

Mommy and Emma in recliner after cath and recovering on 8th floor.

Look at that big girl sitting in her Bumbo. And, oh yes, she is watching Baby Einstein. :)

Emma going home after being in hospital from cath procedure.

Emma chilling at home in her activity center.

We might skip needed development and go straight to reading! ;)

Me and my sweet Princess outside.

Emma outside by flowers at hospital.

Sweet little Princess!! :)

An Update on Miss Emma and Future Events

2011-05-21T20:49:00.000-07:00

Well hello to everyone! Just wanted to give a quick update on how Emma is doing and also on some soon to be events in the near future. Emma is doing amazingly well at home! This week, Sarah and I took a vacation/work related conference to Las Vegas and Gramma (Sharon) watched after her. It was very hard leaving her but was good for us. A special thanks to her and all those that came down to be with them and help take care of Emma. She did well the days we were gone and greeted us the night we got in with snores as she slept soundly. The next day, however, was full of smiles as she saw that we were back home. I got to watch her yesterday while Sarah went to something she had planned, and let me just say, I think that Gramma may have done a little spoiling while we were gone! ;-) She is still developing that little personality of hers. As I was watching her, I turned around for about 5 seconds, and when I had looked back, there she was, with NG tube in hand. She had decided to completely remove it! And as I said, "Emma, well now why did you pull that out," she just looked at me and smiled. Ornery little thing :-)

Well we are about to head in tomorrow to the hospital as we prepare for our cath procedure on Friday. You may be thinking, "Well why in the world do they need to go in Sunday if the procedure is Friday." It is only because she is on a medication that they are wanting to ween off before the cath. This way, it will not make the cath procedure have false reading. So we go in tomorrow sometime and get settled in for a week (or more) back in the hospital. Please pray that her cath procedure goes very well on Friday and that we will have some sort of clearer direction for Emma's future plans.

I would like to extend a continued thank you to all of you that continue to pray for Emma and us! As you can see, those prayers are working!

God is good, all the time. And all the time, God is good!

Specific Prayer Requests:
1) Pray for Emma's upcoming cath procedure on Friday.
2) Pray that the doctors will know which way to go that will be best for Emma.
3) Pray for all the medical staff that will be taking care of Emma this week.
4) Continue to keep Sarah and me and our families in your prayers.

Be sure to check out the latest youtube video if I can get it loaded!

Daddy Scott

Mother's Day

2011-05-10T13:42:00.000-07:00

Wow, what a Mother's Day! I am so blessed to be the mother of Emma! Emma has changed my life in so many ways! Becoming a Mother changes anyone's life, but becoming a mother to a child with a CHD really changes your life. That moment where you get to hold your baby for the first time happened for me when Emma was 21 days old. The first time I heard her cry---5 months old. The first time to pick her up by myself---5 months old. Her coming home outfit---size 6-9 months because she was six months old before she got to leave the hospital. We start our morning off with a smile and 10 meds! I have several charts up in the house just to keep track of her meds, ins and outs, PT/OT/ST, doctor appointments, etc. They have called me in twice to tell me that my daughter is crashing-----However, at the end of it all, she is HERE! God has given me 7 months with this sweet little girl. Yes, we have a long ways to go, but we have come so far!

I got to spend Mother's Day with my Mom, Dad, Scott, Emma, My bother, My Sister-in-law, and Coen! My Wonderful husband wrote me a beautiful poem for Mother's Day that I want to share with you! Scott is an amazing husband and father and he went out of his way to make me feel special on this day!

Poem by Scott:

I look before me and I see,

Our child's amazing mother, and hey, she is married to me!

She loves our child with all of her heart,

And she has from the very start.

She makes mothering our child a priority in life.

Even though, at times, it is filled with some strife.

She drys up the vomit, and cleans off the poo,

And she turns and says to me, "Well that's just what mother's do!"

She gives our child baths and changes her clothes,

she even uses the electronic sucker to clean out our child's nose.

She cleans he house and even cooks the meals,

I don't tell her this enough, but she's kind of a big deal!

She wahes the dishes, and cleans off the table,

Even when Emma is across the room screaming, and she may not feel able.

She deals with all aspects of our child's care,

Which keeps her so busy she might not be able to fix her hair.

She gets ready the feeds, and preparess the swing,

Puts on Baby Einstein, while in the background the phone begins to ring.

Oh there are so many many more things that I could list out,

That would give you a better idea of what her life as our child's mother is all about.

But one phrase is for sure, one statement that trumps all other,

"I have the best wife, and our child has the best mother!"

Pics from Mother's Day!

(Having issues with pictures...Will upload soon)

Future Plans:

Emma will go to the hospital on the 22nd to spend a week before her next heart Cath! The next heart Cath is on the 27th and will look at the current function of her heart. This will give the doctors an idea of where to go from here!

Prayer Requests:

That Emma will continue to gain weight and grow!

That Emma will be able to stay off of oxygen!

That Emma will stay infection and virus free!

That Emma's Cath will go well and the doctor's will be able to make a good/informed decision for Emma's next step!

That Emma will have a short and uneventful recovery from the Cath!

That Emma will continue to improve with her physical development!

That Scott and I will have the knowledge/patience/strength to take care of Emma!

Please pray for Emma's heart buddies!

God is Good! All the Time! God is Good!

Sarah (Emma's Mommy)

WE ARE HOME!!!

2011-05-01T14:54:00.000-07:00

To our Loyal Blog Followers,

I am so sorry that we have not updated the blog in so long. It has been an extremely busy, yet eventful few weeks. I would write a lengthy, detailed summary about what has gone on, but instead I will hit the highlights in a list.

Emma was doing SOOOO well that she got to move to the 8th floor! This is the Cardiac floor you go to, to get ready to go home!

Emma is not requiring any oxygen support:

Emma is feeding into her stomach with breast milk! She is also doing bolus feeding!

She had her first Easter and got to spend it with cousin Coen! She also got to dye eggs and hunt Easter eggs!

Emma got to come HOME (well, our Dallas home)

First car ride!


I pulled my NG out on my car ride home!

Emma will go back at the end of May for a Cath procedure to evaluate her heart again! The doctors will then decide what the next step in her plan will be!

PLEASE REMEMBER: Emma still needs to stay INFECTION FREE, so we will not be getting her out much and request that you do not come if you are sick, have been around sick people, etc. Also, Scott and I are trying to get used to this new lifestyle, so if we do not return phone calls, messages, etc. please know that we are trying our best!

Prayer Requests:

That Emma will continue to gain weight and grow!

That Emma will be able to stay off of oxygen!

That Emma will stay infection and virus free!

That Emma's Cath will go well and the doctor's will be able to make a good/informed decision for Emma's next step!

That Emma will have a short and uneventful recovery from the Cath!

That Emma will continue to improve with her physical development!

That Scott and I will have the knowledge/patience/strength to take care of Emma!

Please pray for Emma's heart buddies!

God is Good! All the Time! God is Good!

Sarah (Emma's Mommy)

Updated Bow Pics!!!

2011-04-19T17:16:00.000-07:00

Click for Emma's bows:

Attention Address Change!

2011-04-16T21:42:00.000-07:00

Scott and I are moving to an apartment in Dallas!

The address is:
Scott, Sarah, and Emma Stewart
MAA
Open Arms
6800 Arapaho Rd #1085
Dallas, Texas 75248

8th Floor, Home, OH! MY!

2011-04-12T15:39:00.000-07:00

Our little family on our first outing outside!

Many of you have been curious as to how Emma is doing! I am very happy to announce that she is doing so very well! While we still have many hurdles to cross, she has surpassed so many of the hurdles that the doctors thought might be hard to surpass without a new heart.

Emma is now:

1. On only 2 liters of oxygen! (If you can remember, we started extubation at 20 liters)

2. On BREAST MILK!!!! (Emma was on a fat free formula for 6 months)

3. Being fed in the stomach! (Before Emma was fed into the intestines)

4. Trying baby food (little bites of vegetables and cereal)

We met with our care team last Friday and had a great discussion on where Emma is headed. According to the team, if Emma continues to do well, then towards the middle to end of next week, we will move to the 8^th floor. We are very excited about this possibility; however, at the same time, we are EXTREMLY NERVOUS. For the past six months we have been in the ICU under the CONSTANT supervision of many doctors, nurses, and therapists. While we do basically all of Emma’s care during the day and night, we have learned to rely on the expertise of the ICU team and the love and care they have shown to our little Emma. We have been assured by MANY people that the transition to the 8^th floor should not be as difficult since we already do so much for Emma and that barring no set backs, we should only be on the 8^th floor for about a week and then “home.” “Home” for us will be in the Dallas area until either a) Emma gets a new heart or b) in a couple of months they reevaluate her heart via the cath lab and determine that she is a Glenn candidate (not likely at this point but “never say never.”)

To be honest, I am really scared to be “home” with Emma by myself, but as nervous as I am about it, I am also happy to think about having a “home” and doing normal sort of things with my baby. We will continue to live in Dallas and have a prospective apartment set up that houses long-term medical families.

Please continue to pray for Emma:

1. As decisions are made for her future.

2. That her lungs will stay open and clear.

3. That her stomach will tolerate the feeds and she will not have much emesis.

4. That Emma’s heart rhythm will stay normal.

5. That a new/perfect heart will be available to her in the right time.

6. That she will continue to grow bigger and stronger as well as catch up developmentally.

Also pray:

1. For the family who will be donating their child’s heart.

2. For Scott and I to have the wisdom, strength, and courage to take these next big leaps in Emma’s care.

3. For the other CHD families and their CHD warriors.

4. For Emma’s Aunt who is battling Thyroid Cancer!

Thank you so much for all of the continued prayers and support. We love you dearly!

Emma’s Mommy ~ Sarah

P.S. Emma has taken a few field trips...enjoy the pics

Jeremiah 29:11

God is good! All the Time! God is good!

Some of the nurses gave me a 6th month birthday! I loved my cupcake!

Cool dude in her first trip outside!

First family photo!

New Mommies!

Gramma and Grampa with their grandkids!