Hope for Emma's Heart: April 2011

Tuesday, April 19, 2011

Saturday, April 16, 2011

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

Tuesday, April 12, 2011

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!

Sunday, April 3, 2011

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……