Layla's Journey with CHD

Layla is as fierce as ever. Her recovery from surgery on the 27th is going good. Hopefully only a few more days in the hospital.

UPDATE:

Layla's heart Cath went very well. The doctors said they gathered a lot of good information to plan for the procedure during her next surgery. The surgeons will perform a Fontan procedure, and they will also be removing muscle tissue from her heart that is obstructing her aortic valve.

This surgery is a bit more high risk than her last. However, the doctors all agree that the risk of not removing the muscle tissue from her heart is greater. When she is running around, playing hard, and trying to keep up with her friends, the blockage is significant and her oxygen levels decrease. We have experienced the repercussions of this already. Sometimes she stops playing and looks a little dizzy and lost. She also gets a little bit blue. As she grows the muscle tissue blocking her aortic valve will also continue to grow, so if it is not removed she could experience worsening symptoms.

We are currently waiting for the surgery scheduler to call us and get her surgery on the books. We are anticipating surgery in late August or September.

The love between these three is so strong. I pray that this love remains long after I pass. . . .

At times I get a little complacent. I forget that this girl is different. She is doing so well with her heart condition that its easy to forget.
Layla is so full of life! She loves to sing and dance and create!

Layla just loves to help with all the MAKING of the things ;) She also loves to get her Big Sister involved 🤗 she is making her own playdough in this series. Sooo much fun! I just love these girls to pieces!🥰

Today is the day our precious little Layla Joined this world. She came in with us all wondering if she would make it. She has proven to be one of the strongest, toughest, happiest little girls we all know. She loves to sing and dance, play with he brother and sister and all the animals. She is passionate about being outdoors and loves camping, boating, fishing, and all things nature. She is our most detail oriented child and finds joy and entertainment in the simplest things. I could just go on and on about this Awesome little girl. Happy Birthday Layla. You are so very loved!

This is a touchy subject for everyone. I was presented the choice to abort my most recent pregnancy because the doctors said her heart had a defect. At that point, they said they didn't know if she would survive to term, or if she did she may not survive life outside of the womb very long. Only time would tell. They gave me the choice saying that if she did survive our lives would change and life would always be harder for her, and us. I was confused, but my greatest instinct was to let go and let God. I decided that if God created this life, he did it for a reason, and who was I to terminate a life he created. I knew it would be hard, whether she lived or not. Today I am grateful for God and his almighty power. The life he created and entrusted to me to take care of has been a blessing upon me and my family. I believe she was created to do great things in her life just like every child. She is now 1 year old and she is the happiest little girl I know, and she touches the hearts of everyone she meets, and even people she hasn't met but have heard her story. It has been hard, and will continue to be hard, but I wouldn't have it any other way; God's way. I am not judging any woman or man based on their decision to have an abortion or not; my job is not to judge. My job is to share my experience. Take from it what you will. Thanks for reading, God Bless!

Any other NICU mommas? ❤️❤️

🦖Katie

On the way to her cardiologist. Happy baby!

I just love this little chunky monkey 😍

We are grateful every day of how well is doing post surgery. This little girl brings so much light and happiness to our lives every day. Despite her struggles she always has a smile on her face and shows so much excitement for life and learning new things. She is still going strong eating on her own without the NG tube and we are all so happy about the progress she has made. She has a sedated echocardiogram on Monday where they will put her under anesthesia while they take pictures of her heart. Please pray for her that she recovers from anesthesia well and they get all the pictures they need. Thank you all for your continued support for our . I will post more updates soon 😊

We have decided to boycott the feeding tube. Layla decided to rip it out n the middle of the night so I just didn't put it back in. She has been without it for about a week now and at first she did lose a little weight because she wasn't eating quite as much as she should but her weight today has gained back everything she lost and she has been doing well taking all of her medications orally. Good riddance!

Layla tried squash for the first time today and did an awesome job eating from her spoon. Finished 2/3 of the jar! You go girl!

Today we had a huge accomplishment, Layla finally ate a little bit from a bottle!!! She has been struggling to eat by mouth since her surgery. Everything has been through her NG tube until today. We have been working with a speech therapist to help get her eating on her own again and we decided she doesn't feel confident about being able to swallow and breathe while she is eating.
But her hard work is paying off and she actually started swallowing the food today. I'm so proud 💕

Layla is doing really well 😊 she is happy and playful. I just love this little girl ❤️😍

She's so happy to be going home!!

My poor baby has been really nauseous and vomiting for the past few days. The nurses have not been listening to me when I say I think her tummy hurts. FINALLY got a nurse to listen to me and find a solution for her nausea. She has been relaxing ever since. She gave her zofran and brought in a rock and play for her like the one she has at home. She seems much more comfy now, thank goodness.

I spoke to the doctor about the echo she said that the propranolol that they have her on is working and the echo last night looked a lot better than the one before. She's not promising that she won't need surgery in the future but this is a good plan for now. They are going to watch her closely she usually gets at least one echo a month so I'm sure they'll be looking at that. They wanted to release her today but she has had to have quite a bit of suctioning so they change their mind because they don't think that I can suction enough of it at home so hopefully she clears her cold soon and we can go home

Click here to support Little Layla Open Heart Surgery organized by Lisa Linden Little Layla’s Story. My granddaughter, Layla was born with a few challenges; the biggest being congenital heart disease. The technical diagnosis is A single functioning left ventricle, A double outlet right ventricle, Tricuspid Atresia, Pulmonary valve stenosis, and Transposition of the great a.....

We have received some concerning news based on Layla's echocardiogram yesterday. She has some muscle tissue in the heart that is slightly constricting her aortic valve and making it hard for oxygenated blood to go out to her body. They started a new medication to help relax her heart a bit so that hopefully the muscle tissue does not get any bigger. Worst case scenario, she may need surgery again soon to go in and remove that muscle tissue, if this is the case they may also need to give her a pacemaker. She is still here at Sacred Heart in the PICU under observation for the next few days. They will be doing another echocardiogram tomorrow to compare with the last one and determine if the medication is helping. Please pray for her 🙏

Happy girl today, I even got a few giggles out of her when we were playing! We're still working on feeds, she threw up a couple of times after feeding but we will make some adjustments and hopefully help her out.

Playtime! Layla is getting back to her lively playful smiling self. She got some good rest last night and was wide awake and happy to see Mama this morning! I just love this little girl!😍💕

Central line came out today and we get to hold her!! She has been awake and happy now that she can get mommy and daddy snuggles. . .

Layla is doing well with recovery. They are taking lines off one by one. Over the past two days She had her chest tubes removed, taken off high flow oxygen and put on regular oxygen, art and cbp lines taken out, and started feeds with the NG tube. Tonight she was awake, alert, comfortable, and content. The only thing that is a little concerning is her blood pressure is a bit high but she is being monitored closely

Laylas surgery went well. She is getting settled into the PICU now.

Layla is off the heart and lung machine, they are giving her an echo cardiogram to check the functionality or everything. The. They will close her up.

Layla went back into the OR at 7 they are starting anesthesia and the surgeon should be starting the procedure around 830.

Update. . .

Click here to support Little Layla Open Heart Surgery organized by Lisa Linden Little Layla’s Story. My granddaughter, Layla was born with a few challenges; the biggest being congenital heart disease. The technical diagnosis is A single functioning left ventricle, A double outlet right ventricle, Tricuspid Atresia, Pulmonary valve stenosis, and Transposition of the great a.....

Congenital heart defects are common, costly, and critical conditions
that impact people throughout their lives. In addition to surgical expenses, CHD requires lifelong specialized care. By supporting research to improve quality and outcomes we can reduce those costs.

Medical bills are an added stress of chronic, critical illness. There are ways to minimize that stress. Check out this resource that provides advice on how to work with hospital professionals and outside organizations to better prepare for and manage medical bills.

http://conqueringchd.org/conquering-chd-and-medical-bills-with-akina/

Layla has an appointment with cardiology tomorrow which will give us a better idea if she will be ready for surgery on Friday or not. Also, her oxygen saturation has been all over the place the last couple of days. Last night she was pretty low sitting between 75-80% but today she was pretty high at 92%. We will continue to monitor her oxygen levels closely. . .

Click here to support Little Layla Open Heart Surgery organized by Lisa Linden Little Layla’s Story. My granddaughter, Layla was born with a few challenges; the biggest being congenital heart disease. The technical diagnosis is A single functioning left ventricle, A double outlet right ventricle, Tricuspid Atresia, Pulmonary valve stenosis, and Transposition of the great a.....

Layla's surgery is rescheduled for Friday the 22nd as long as she doesn't develop any more symptoms from the Coronavirus. She is seeing cardiology on Tuesday because she has lost weight and been getting really sweaty. Please pray for little Layla.

Are we Wrong!?!?

Congenital Heart Defects. They're the #1 Birth Defect affecting about babies born.
Awareness. Research. Education.

Super Bowl Sunday is here, once again, and whether your team made it or not, you'd rather be watching the Puppy Bowl​, or you've got plans to watch a good chick flick instead - don't forget the champions of our hearts. CHD families for the WIN!

NFL

We made it to Spokane. Got all settled in the big rig.

Why Having a Daughter With a Congenital Heart Defect Feels Like an Emotional Roller Coaster "It's a balancing act of time."

Please keep sharing! Thank you all for your support!

Click here to support Little Layla Open Heart Surgery organized by Lisa Linden Little Layla’s Story. My granddaughter, Layla was born with a few challenges; the biggest being congenital heart disease. The technical diagnosis is, A single functioning left ventricle, A double outlet right ventricle, Tricuspid Atresia, Pulmonary valve stenosis, and Transposition of the great...