CHD Awareness Photo Challenge Days 1-15

 I have not shared anything on the blog for CHD awareness week like I normally do.  However, I wanted to share a challenge that I'm participating in during February.  Each day has a different theme that deals with an aspect of congenital heart defect awareness. I have included days 1 through 15 in this blog.  Thank you again for always supporting our sweet little heart hero. This is a special time for us and we work diligently to try to educate others on what it is like to live with a CHD.

CHD awareness month is here, so I will be participating in a daily awareness photo.  Day 1: diagnosis....Emma was diagnosed at 19 weeks prenatal with a severe congenital heart defect.  We would learn a few weeks later that the defect was Hypoplastic Left Heart Syndrome with intact atrial septum. I encourage all expectant mothers to ask about the heart during their anatomical ultrasound.  There are over 40 types of CHDs. Early diagnosis helps to save lives. ❤️

CHD Awareness Month Photo Challenge Day 2: Surgeries/Meds/Interventions: These five photos represent the five open heart surgeries Emma has fought through. #chdwarrior #mendedlittlehearts #chdawareness #RockYourScar #HLHS

CHD Photo Challenge Day 3: Family: We are truly blessed with supportive Family and friends who are like family. Scott and I truly do not know what we would do without their encouragement, love, and unwavering support.

Day 4: CHD awareness photo challenge: Hospital: Emma has been treated at both Children's Medical Center (Children's Health) in Dallas and Boston Children's Hospital in Boston.  The hospitals varied greatly in their structure and organization; however, what was not different was the care, love, and heart put into taking care of our precious Emma.  #chdawareness #cmc #bch

CHD Awareness Month Photo Challenge Day 5: Cardiologist:  Dr. Lemler has literally been with us since before Emma was born.  He has been with us during extremely hard decisions, sat at the hospital with us in the middle of the night during our hardest moments, celebrated with us during unexpected successes, come to our rescue more than once during inpatient stays and ER visits, answered panicked phone calls, and supported us throughout all of Emma's ups and downs.  We give each other a hard time, but we are honored to have him manage Emma's care. #chdaware #HLHS #cardiologist

CHD Awareness Photo Day 6: Hope: I could go on and on about hope, but I will just leave this here. We continue to hold on to hope and trust in God's plan for our tough little girl who was born with half a heart. #CHDaware #HLHS

CHD Awareness Photo Day 7: Red and Blue: What does red and blue mean to me? The diagram on the left shows Emma's heart defect at the different stages of palliation. Notice how the red (or oxygenated blood) and blue (unoxygenated blood) mix.  This causes Emma's  lower oxygen saturation levels which makes her appear blue. Red and blue are also the colors we use to represent congenital heart defect awareness. #chdaware #HLHS #hearthero

CHD Awareness Photo Day 8: CHD Facts: My Emma is 1 in 110....Are you CHD aware?  Every 15 mins a child is born with a CHD.  #chdaware #HLHS

CHD Awareness Photo Day 9: Awareness:  I am a coordinator for a group called Mended Little Hearts of Dallas.  I do this to share hope, education, support, and awareness.  Emma is the reason I am so passionate about the work I do.  #chdaware #HLHS #mendedlittlehearts #RockYourScar

CHD Awareness Week Day 10:  #RememberOurHearts #CHDaware

CHD Awareness Photo Day 11: Favorite Quotes!  I have so many, but here are a couple. ❤️❤️❤️

CHD Photo Challenge Day 12: What I wish people knew: I wish people knew that CHDs impact more of a child's life than simply their heart. Due to Emma's CHD, she is challenged every day with developmental delays and other organ issues.  Also, I get asked frequently if Emma's heart is fixed. There is not a cure for her CHD.

CHD Awareness Photo Day 13: Heart Family: Being the parents of a child with a congenital heart defect can feel very lonely; however, meeting many other heart families along the way, whether in person or through social media, living next-door to them in the hospital or meeting them at a heart event gives you someone to relate to, vent to, cry with, and celebrate with. #CHDaware #heartfamily #mlh

CHD Photo Challenge Day 14: Heart: When most people think of Valentine's Day , they think of hearts and love.  Don't get me wrong, the 14th of February makes me think of love and hearts and red and pink; however, since 10/4/10 when I think of hearts, I think of my half a heart hero.  Her heart is shown in the top picture.

CHD Photo Awareness Day 15: Nurses:  we have been very blessed with caring, loving, and attentive nurses from the beginning. From our nurses at CMC to our nurses at Boston and home, Emma has been surrounded by amazing advocates that aid in her care.  I don't have pictures of everyone, but please know that we are so thankful for all of her nurses who worked tirelessly to help Emma get to where she is today.

Emma is doing well. She is very busy in her therapies and school. We continue to travel to the cardiologist every week for her PICC line care and lab monitoring.  Thank you for your continued prayers and thoughts.

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

We're Back!! 😉

Hello faithful blog followers. I want to once again begin by apologizing. I have been more then a little delinquent in keeping up with the blog over the past several months. In part it's been because we've been busy; and also because I'm in a time crunch with my dissertation; and also because we're living life which is something we really didn't get to do for the better of eight months.  

In October, I did sit down and do a brief medical update and a fun birthday post; however, that post got lost after I had spent hours of writing a clever poem about the last five years of Emma's life (I know, save save save) Anyways, I never got back around to finishing or publishing those posts, so today I will do my best to update you on the last several months in a fun post and then do a post about her medical issues.

In September, Emma was asked to be a part of an event called the Portrait Project. This event raises awareness for children fighting big battles. Emma had her picture taken by a professional photographer and unveiled it at an event in Dallas. The event raised money for the cancer center at Children's Health in Dallas. We were honored to be asked to be a part of the event and the portrait that was taken was beautiful.

Emma started the month of October with the bang.  Her PICC line broke and she was admitted to the hospital a few days before her birthday to get a new one placed. The team worked tirelessly to get her out before her birthday party and we arrived home just a few hours before the fun began. Being the big five-year-old girl that she is, Emma is getting to make a lot of decisions. She told me that this year she wanted a monkey and alligator birthday party. While this may seem strange to some, feel free to YouTube "five little monkeys swinging in the tree," and you will see why Emma's favorite song became the theme for her birthday party. Emma was surrounded by family and friends on that day and had a good time despite being sleep deprived and sore from a recent procedure and hospital stay. 

We are so blessed to celebrate another birthday with Emma. I challenge all of my mom friends out there to not be sad about milestones and birthdays. So many of my friends in the heart community would give almost anything to be able to celebrate another milestone or birthday with their little one. For this reason and many many more, we are joyful for each milestone and birthday that we get to experience with our little sunshine.

October brought about many more fun activities as well. We had or annual Mended Little Hearts of Dallas pumpkin patch event. It was an unseasonably warm day, so Emma wasn't quite content with being out for the event in the hot sun.  But it was a great turnout and we enjoyed continuing to support and encourage heart families in the DFW area.

We also took a much-needed family vacation. We took our camper to Lake Texoma for a week.  Gramma and Grampa took their trailer as well and we enjoyed a relaxing vacation in the summer-like temperatures. Grampa, Gramma, and I all got to waterski on a 90 degree October day. We went on boat rides, attempted to go fishing, took walks around the park, watched Max and Gramp play with the remote control boat, had friends come down and play one day, and just enjoyed being together.

Emma also got to choose what she wanted to dress up as for Halloween. She decided she wanted to be a monkey and she wanted Max to be an alligator. Halloween is also daddy's birthday, so we enjoyed celebrating Scott's birthday when he got back from a business trip that day.  Emma really second-guessed her choice of being a monkey because she hated having to wear the head piece.  Check out the hilarious the tips for pictures with these two crazy zoo animals.

November has been pretty busy yet normal for us. I'll detail how our week typically goes. On Monday and Wednesday she sees physical therapy, homebound school, and speech therapy.  On Tuesdays and Thursdays, she has school with mommy and Lorelei and occupational therapy. Fridays are typically an early morning  cardiology appointment to check labs and change her PICC line dressing in cap.

We traveled to Oklahoma for Thanksgiving. We spent some time with my Gerth grandparents and Scott's side of the family. We enjoyed some yummy breakfast made by my MawMaw and delicious lunch made by my mother-in-law and sister-in-law.  It was a short but sweet trip and we loved spending time with family.

So what have Scott and I've been up to? I have been diligently working on my dissertation. I got some news at the beginning of this Fall semester that has really lit a fire under me to get my dissertation done by the end of the spring or beginning of the summer semester.  So, I am spending a lot of my extra time and late nights working on analyzing data and writing my last two chapters. I am also continuing with my volunteer position with Mended Little Hearts to Dallas. This is something that I really enjoy doing.  I've always hoped and prayed that my experience with Emma can make a difference. Speaking of Mended Little Hearts of Dallas, during this time of the year when we're looking to fill our stockings and trees with presents. I come to you and ask that if you're looking for a way to give back to some families that may be spending their Christmas in the hospital consider visiting dallas.mendedlittlehearts.net and donate via PayPal so that we can provide comfort and care items to these families while they're in the hospital.

Scott has been very busy with work. October had him going to Washington DC and Las Vegas. November has seen an increase in nursing home facilities in the state of Texas,  so he has been busy getting those implemented.  Scott has also volunteered as one of our Bible class leaders, co leader for our life group, and  is working with the Thrive campaign at our congregation to help provide food to those in Low socioeconomic locations in McKinney. I am so proud of how hard he works for us and those in the community.

As you can see, we have been a very busy family over the last few months. It is a good busy, it is back to some sort of sense of normal. Don't get me wrong, there is always her heart failure. It affects us on a daily basis. Her body does not have normal stamina, and there are days when she is completely worn out; however, her endurance and will to keep living inspires me daily. Speaking of will, this kid is one hard headed/stubborn little girl. Please don't ask me where she gets it from LOL. Emma has decided that she's just not going to participate in activities. One day she had to go to timeout five times in the period of an hour for not finding five things in her sensory tub. It is not uncommon for this little one to get multiple things taken away from her on a daily basis. I love her fight but she knows better and has to learn how to obey as well.  She keeps us on our toes for sure.  We are looking forward to the holiday season.  We have a lot of fun family activities and mommy school activities planned.  Thank you for continuing to pray for our sweet girl.  We cannot thank you enough for the love and encouragement.  God is good!  All the time!  God is good!

Finding Our Normal

It has been a few weeks since we've updated the blog so I thought I would give our loyal blog followers a brief update on Miss Emma.  First and foremost, Emma is really enjoying being at home. It does our hearts good to see the joy on her face from doing normal run-of-the-mill activities that she has missed so much in the past seven months.   

Therapies:

Emma has officially started physical therapy, occupational therapy, and speech therapy.  She has thoroughly enjoyed getting to see each of her therapist that she is not been able to see in a long time. She is working very hard for each one of the ladies and they are very impressed with the progress they are already seeing. As we all know, Emma is constantly surprising us with her ability to reach beyond the limits that so many medical professionals put on her early on in life.  

Physical Therapy: 

The physical therapist is working with Emma to increase her stamina post op. She is also working on getting Emma to learn how to do transitions to get herself up and out of bed.  Once her stamina improves for standing. We will begin working with Emma in her kid walk to get her to use to the walker in order to maneuver herself downstairs. Pic of Emma standing at window looking for flying pigs: 🐷

Occupational Therapy:

The occupational therapist has been working primarily to get Emma to be not so sensitive to certain textures. After all the hospital stays and surgery Emma is having a difficult time handling different textures.  Her sensory issues have progressively worsened;however, we have all been pleasantly surprised with her willingness to try new textures at home.   So, this picture of Emma touching sand is a HUGE deal:

Speech Therapy:

In speech, we are working on teaching Emma how to use an augmentative device on an iPad to help further her communication needs.  We are starting very basic, but she seems to be picking up on how to ask for things that she wants.  You see, Emma has a huge understanding of the world around her, but cannot express her needs...imagine how frustrating that is for her.  We are hoping this will open doors for her in the communication department.  I don't have a picture of her using this, but she is always communicating through signs and drawings.  She drew a picture for her friend Smith. 

Medical Update:

Emma is still struggling quite a bit with fluid balance issues. We are getting labs at least twice a week to monitor her fluid balance. In true Emma fashion, when she looked her best, her numbers were not good. We had to back way off of her diuretics and increase her feeds in order to make her kidneys happier; however, this did not help her abdominal ascites at all. So, here we go again...increase diuretics and check labs on Friday. We know this will be an ongoing battle....but at least we're home.  Her last echo was stable so we continue on....one day at a time.  

Overall, we are loving the process of finding our normal again.  We have found a couple of wonderful nurses who are helping us get back into a routine conducive of our crazy individual schedules.  

God is good!  All the time!  God is good! God's goodness is not dependent on how smooth or fair our lives are.  God is faithful....even during the storms...he is waiting....waiting on us to choose to either turn our backs or trust in his plan.  Scott and I are choosing to trust...even when it is hard.   

Once again, we can't thank you enough for the prayers, cards, encouragement, love, and support you all have shown us in so many ways.

A big catch up: HOME

Wow! It has been a whole month since I have updated the blog. Time flies when you're.....in the hospital.  What to say to get you caught up? Basically, life has been a lot of the same old same all since we arrived from Boston. The biggest issues that we deal with are fluid issues, feeding issues, abdominal girth issues, infection issues, electrolyte issues, and cardiac issues. No biggie right?  It would seem like we were getting very close to gearing up to go home when of course there had to be something that prohibited that. This time the culprit at hand was C-Diff.  If you don't know what C-diff is, I encourage you to Google it....or on the other hand,maybe not (ha ha)!  Basically, C-Diff causes a lot of diarrhea that is very contagious.  In a kiddo like Emma who has been on a long-term antibiotic course and is also taking PPI's including Prilosec and Zantac, C-Diff can be very difficult to eliminate. When we started noticing the frequent diarrhea, we also noticed that her abdomen was distended and she seemed very uncomfortable. After the abdominal ultrasound showed minimal fluid, The team decided to send her stool to check for bacteria. At this time, Emma also started having issues tolerating her formula.  It wasn't that she was vomiting, or retching or gagging, but she was so uncomfortable that she would scream, refused to sleep, and was just overall very cranky. The team decided to run Pedialyte only and give her gut a little bit of a rest. At this time they also started an antibiotic to help with the infection. We slowly worked up on her freds and started her back on a more elemental formula to hopefully cause less stress on her G.I. tract.  However, when we got back up to full feeds she started having the same issues again so we are now at three quarters strength feeds throughout the day and night of the elemental formula. However, she was still having frequent loose stools after the first 10 day course of antibiotics, so the team decided to to give her a very long tapered course of antibiotics to fully eliminate the bacteria. 

I

Since I wrote the above paragraph, (I have started and stopped this post multiple times) Emma has been able to come HOME!!!! Going home looks a little different this time. Going home includes more medications, more tubes, mines, and wires.  None of that really matters though because it means that we can be home for the first time together in close to seven months. Yes, we had a few days at home in February but those were some very miserable days as Emma was very sick and did not feel well.  we are anxious yet excited about this next step in our journey. We know that the likelihood of us returning back to the hospital is very large. We hope and pray they were able to stay Home for a while before we have to enter again.   We are doing our best right now to get settled in at home, restart therapies and nursing, go to weekly cardio appointments, and overall getting our life organized.  

Emma is still in heart failure, she is still dealing with some mild abdominal ascites, and is still being treated for C-diff; however, she is happy, active, and learning more and more every day. Scott and I are truly amazed by her tenacity.  We are truly blessed to be able to be her parents even in the hard times. We continue to ask for your prayers as we walk this journey with her.  we know that God has a plan for her life and we trust in that plan. As always, God is good! All the time! God is good!