An Update on Miss Emma and Future Events

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

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!!!

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!!!

Click for Emma's bows:

Attention Address Change!

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!

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!

Happy Half Birthday

Six Months:

Wow!  Where has it gone?  On Monday, April 4^th, my little girl will be six months old.  Obviously, words cannot even begin to express how much these six precious months have meant to me.  Emma is such a sweet blessing from above and fills each and every day with a little bit of sunshine.  My “sister girl, punkin head, sweet pea, and princess” has taught me more about unconditional love than I could’ve ever imagined.  On May 19^th of last year, I found out that the sweet little girl that I was carrying had a major heart defect.  My life changed at that exact moment.  The unknowns and what ifs were terrifying.  Little did I really know.

 The doctors told me that Emma would have about a 20% chance of survival.  20%, is not a big number.  I was scared, scared that this precious being that I was trying so hard to take care of would not make it.  I did not want the normal things like baby showers, big shopping events to buy fun things, etc.  I could not bear the thought of having a room full of things that I might possibly come home to without the baby that would enjoy it all.  My wonderful family, friends, and husband were always encouraging me to try to enjoy the pregnancy, but to be honest, that was hard! 

There were times when I became bitter.  Bitter toward the brutally honest doctors, fellow peers who were having perfectly healthy babies, and bitter at people around who just didn’t get it.  I despised myself for feeling this way, but I was broken, disheartened, and at times feeling VERY alone.  However, in my darkest moments I had(have) a God who helped me out and got me through.  He also put an AMAZING man in my life who I am honored to call my best friend and husband.  Scott was there to be my comforter when I needed it the most, to let me cry, scream, and question.  He was also a big help when it came to late night snow cone, ice cream, and ICEE cravings! J  I also have the BEST MOM EVER!  My mom came to all of Emma’s appointments and learned about EVERYTHING right along with Scott and I.  She stayed with us for three weeks after Emma was born and has been my go-to-person and I am honored to call her my best friend.  She is the person that I try to emulate as a mom!  I pray that I can be half the mom to Emma that she has been to me!  There are so many other people in my life who have been so supportive!  I hope you know who you are and how much you have helped me along the way.

Emma has come a LONG way in the six months that she has been here with us.  Below is a short synopsis of some of those happenings.  Our little girl only has HALF A HEART but is TWICE the FIGHTER!  She has THE BEST COACH in HER CORNER!  We give GOD the glory for bringing our little girl through SO MANY low points!  

In six months Emma has:

1.     Had 3 Cath Lab Procedures

2.     Had 2 Open Heart Surgeries

3.     Had ECMO brought up twice

4.     Had the Crash Cart in the room 4 or 5 times

5.     Been Intubated for 5 months, but NOT NOW!!!!

6.     Had almost daily X-Rays

7.     Been in the Cardiac ICU for 6 months!

8.     Been poked and assessed ALOT

9.     Seen a doctor or two or three or four…..a day!

10. Had more than a dozen chest tubes

11. Had numerous renal ultrasounds and heart echos

Emma Also…….

12. Has had her first smile, laugh, kisses, hugs, etc. 

13. Has proven over and over again that she is a FIGHTER!!!!

14. Has been listed for a NEW HEART!

15. Has been extubated for 4 weeks!

16. Has brought together many people in prayer!

17. Has gained a lot of physical strength

18. Has flat lined and come back twice

19. Has won over the hearts of many doctors, nurses, and therapists

20. Has gained a lot weight and grown when at a point she was “failing to thrive”

21. Despite all the poking and prodding, is AN EXTREMELY Happy and Easy-Going baby.

22. Has changed our lives in unimaginable ways

We are so blessed to have such caring, loving, supportive, and encouraging people in  our lives.  We have been HONORED to share the last six months with you and we pray that we get to share MANY, MANY more with you!  Happy HALF Birthday to our Beautiful Little Princess!  Keep on fighting!  God is Good!  All the Time!  God is Good!

Enjoy a little walk down memory lane……

October 4th: The Day Emma arrived!

Post Norwood (October)

Growing in her "Grow Box" (November)

First Christmas Photo (December)

A New Year brings "Hope for a New Heart" (January)

Our Little Girl is getting CHUNKY (February)

Look who is EXTUBATED!! (March)

Happy Baby! (April)

Much Love,
Emma's Mommy (Sarah)