|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 8th 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 8th 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 8th 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.
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
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!