I shared Lydia's CHD story on Facebook throughout CHD Awareness Week. I don't want to lose those posts and feel like this is the best place to share and save them.
February 7th -14th is Congenital Heart Defect Awareness week. February is American Heart Month. 1 in every 100 babies is born with CHD. This equates to one child every 15 minutes. Our heart warrior was born with an interrupted aortic arch, ventricular septal defect and an atrial septal defect and had her 1st open heart surgery at 9 days old. She is now presenting subaortic stenosis and will need a 2nd open heart surgery. #love4lydia#chdawareness #runforlittlehearts #heartmom #heartdad #heartmonth #chd
National Wear Red day! #goredwearred #love4lydia #chdwarrior#ionlyown2piecesofredclothing
Thank you Maxim Healthcare Services, Katelyn, Heather, Kurt and Mary! You support our #CHDwarrior everyday by providing excellent nursing care!#love4lydia
Time to FB blast you with information about CHD, Lydia's diagnosis, and how Daniel L. Riggs and I handle it each and every day. February 7-14 is Congenital Heart Defect Awareness Week. 1 in every 100 babies is born with a CHD, that's one baby every 15 minutes. #love4lydia #1in100 #CHD#chdwarrior
February 7th - Diagnosis - it was a whirlwind and a flurry!
April 1: We went for our 20 week sonogram and Lydia was measuring small. Dr. Newby wanted us to get a second opinion but thought that Lydia was probably just going to be petitie.
April 4: Dan's Diaper, Booze and BBQ "shower" was this day and I spent the night at my mom's dying Easter Eggs and getting ready for Easter Brunch the next morning.
April 5: Easter Brunch with the Krupich Family and Easter Dinner with the Riggs Family, then home to prepare for Opening Day festivities!
April 6: Opening Day at the K with Steve and Vet. It was a drizzling soggy day of tailgating but we brought home a win!
April 7: The dreaded glucose test. Not the quick one, I was borderline on that so I had to go in for the long one. I had to sit in the waiting room for 3 hours and have my blood drawn 4 times. Ugh.
April 8: Follow Up sonogram with Dr. Finley who saw something different about Lydia's left ventricle and wanted us to visit the Fetal Health Center at CMH. We left out the side door of the office, it felt like we were escaping something but it was more like we were hiding something. We were hiding our tears and emotions, trying to make it to the car like any healthy patient. I remember Dan hugging me and putting me in the car and waiting with me while I cried and cried. Then he followed me home and we sat on the couch stunned when CMH FHC called to schedule our Fetal Echo on Friday.
April 10: 7:00am drive to CMH fighting traffic on I-35 in a anxious, nervous, daze. Arrived, navigated the horrific parking garage for the first time, went through security, worked through the maze of corridors and up to the FHC. The echo was uncomfortable because of all my extra fluid, the camera had to be pushed extra hard to get the images. We met with Dr. Lay, Nurse Lori and the Genetic Counselor to find out that Lydia had a hypo-plastic aortic arch and a VSD. I had tears running down my cheeks while furiously taking notes and learning all I could. We both left and went to work, I think hoping for a distraction, and we only made it a couple of hours.
April 11: My baby shower. Yep, the day after diagnosis. That was a tough day to get through. I held back all the tears though and was surrounded by dozens of people that already loved and cared about Lydia and would help her with prayer.
We went back to the Fetal Health Center every Wednesday from that day until June 10 when I was admitted to have labor induced. It was weeks after this initial visit that we found out Lydia's heart defect was more severe and was actually an interrupted aortic arch and a VSD and ASD and that it was likely that she had DiGeorge Syndrome or 22q11 deletion.
Thanks for reading all of that. The next posts will be shorter, promise!#1in100 #chdweek #love4lydia #chdwarrior #CHD
February 8th - Surgery/Meds
June 14, 2015 - Flag Day! Happy Birthday Gpa K! Happy Birthday Lydia! Lydia was born at 3:49am and was able to be near Dan and I for a couple of hours. I remember Dr. Bohan showing her to me and then handing her to Dr. Carter. At the CMH Fetal Health Center there are birthing rooms with NICU nursery type rooms attached. I was able to hold Lydia for a little while and then they need to start hooking up IVs, monitors and giving her medications. I think our parents came in around 5:30am and saw her too, then she had to go to the NICU. Dan went with her and then we transferred to another room.
I was able to go see her sometime that morning and she had a corner space in the NICU. I remember rounding the corner and about a dozen people surrounding her and looking on from a few feet back. She was being intubated because they thought she was having seizures. My baby girl was hooked up to things from head to toe and the tears were streaming down my cheeks. That's when I met Rachel, our amazing Social Worker in the hospital. She tried her best to comfort me but all I could do was watch and cry. The seizures weren't really seizures. Lydia stayed in the NICU just over a week waiting for surgery.
We moved to the PICU to secure a room for post-op on day 9 or 10. I remember Nurse Bailey coming in and I was trying to untangle her cords and wires and IV lines. She had me sit down and she patiently took almost an hour to sort them out. We spent the night with her the night before her surgery. We met the surgeon and anesthesiologist, then we just took turns holding her until well after midnight. It was always such a puzzle to figure out where are her cords were, what ones were tangled, what ones were stuck to her with a sticker and what ones were actually in her. We finally went to our Ronald McDonald Room and slept for a few hours before getting up at 5am and seeing her off to surgery at 8am. I sang to her all morning.
Dan and I waiting in the PICU waiting room because we wanted the distraction of people coming and going. We ate really bad donuts for breakfast, Lauren and Erin brought us coffee from Twisted Sisters, and Phil came to bring us lunch. It was a long wait with almost hourly reports from the nurse which I would frantically text out to family. Each report was good, our baby girl was doing good. Finally the report that she was in recovery and we could see her in a couple of hours. We were warned that she would be puffy, that she would be hooked up to a lot of things, that her chest remained open due to swelling, and the she may not look like herself. Maybe they just prepared us for worse than reality, because our beautiful little girl was waiting for us. I remember reading all her monitors and seeing good numbers for once! Lydia's chest remained open for a week and we were finally able to hold her again on the 4th of July.
Pictures: Lydia in the NICU with Dad and Mom. Lydia with Mom and Dad the morning of surgery. Lydia with the pink bow hours after surgery. Lydia recovering and peeking out at us. Dad and Mom holding Lydia on the 4th of July.
February 9th - Siblings...but I'm going to talk about our extended stay instead.
Lydia doesn't have and probably won't have siblings. She does have some pretty amazing cousins (5 of them)! She also has some wonderful friend/cousins to keep her company!
Lydia's heart difference is directly tied to her 22q11 deletion. This is a microdeletion on the lower half (q) of her 22nd chromosome. The deletion can affect every major organ and system in the body. The variances of 22q11 are extreme. One may have the deletion and never know and never suspect. One may have symptoms so severe they may not survive. A lot of the issues present themselves early on, but a lot are a waiting game.
Lydia stayed in the hospital longer than another baby with just the need for her heart procedure would have. Lydia was breathing very heavy after her surgery and needed to gain weight. I was told day after day that she needed to gain weight to breathe easier and that she needed to breathe easier to gain weight. We kept pushing the calories and she kept spitting up. Lydia was gaining grams, not ounces, not pounds. Next step was her g-tube and fundoplication. The g-tube is a little port in her tummy that goes directly to her stomach, this is how Lydia eats. The fundoplication is a procedure to wrap a portion of the stomach around the esophagus to limit or eliminate regurgitation. All of this helped a little but she was still breathing too hard. I remember when we were told that Lydia was breathing like she was running a marathon and could never stop and catch her breath. We eventually were able to accept that she need the tracheostomy. It was astonishing to see her after she got the trach. She came alive, smiling, wiggling, gaining weight and loving life.
Pictures: Lydia feeling crummy in the wagon on the way to have a study done. Lydia on a BiPap/CPap machine because her carbon dioxide levels were rising. Lydia showing us her personality after she received her trach. And finally, Lydia taking her last morning nap in the hospital on the day we came home - August 31, 2015.
February 10th - Realizations
1. an act of becoming fully aware of something as a fact.
2. the fulfillment or achievement of something desired or anticipated.
We realized our pregnancy experience wasn't going to be typical.
We realized our birthing experience wasn't going to be typical.
We realized our newborn wasn't going to have typical newborn experiences.
We realized we were going to have to say okay to our daughter having procedures we couldn't control and would go through ourselves so she didn't have to, but that wasn't an option.
We realized we'd leave the hospital without her for 79 days and enter a room where she was supposed to be.
We realized moving her bedroom to the living room to make it conducive to nursing care wasn't the end of the world and actually rather convenient.
We realized that she would visit a cardiologist one or more times a year for the rest of her life.
We realized her diagnosis and differences could mean school, heath care, insurance, etc. struggles the rest of her life.
We realized one surgery wasn't it. We are living in the unknown. We don't know how her heart will develop and how many surgeries she will need.
We realize every day that Lydia is an amazing, strong, beautiful, inspirational, powerful fighter that teaches us life lessons everyday. She is ours and we are hers. Daniel and I were chosen to be Lydia's parents because together, the 3 of us and God, are the team of people who can do this.
We realize we have an amazing support system of family and friends and colleagues that help us and hold us and feed us and pray for us. All of you reading this are part of that. Educating yourself and being interested helps us on this grand adventure.
Lydia is our greatest adventure!
February 11th - New Life
We've experienced many days of new life, if that makes sense? When Lydia was born, we experience new life. When Lydia came through her surgery, new life. When Lydia's chest was closed a week after surgery, new life. When Lydia received her MICKEY button to help her eat and gain weight, new life. When Lydia received her trach, new life. When Lydia came home, new life.
I prepared for each of these things by 1. crying a lot, 2. listening to everydoctor and nurse and asking questions, 3. researching as much as I could tolerate (I'm librarian, enough is enough sometimes!), 4. Being strong and believing in our little girl.
Lydia's trach was truly new life. It changed her, it changed us, it changed home, our family, the people we know, the things we discuss. Mostly for the better, but also for the unexpected and the uncertain. I never thought the ER or ICU nurse in the room at a social event would now be who I gravitate toward because we have similar things to talk about. I never thought I'd have nurses in my home that have become very close to me and have seen my rollercoaster of life and emotions. I also never knew that complete strangers could care for and love my child so much.
There is so much good in this world and we're lucky to experience so much of it.
What's our next day of new life and how many more will there be? It's unknown. That's the hardest part about all of this, it's unknown. It really makes us be grateful for the moment and the joy her smile brings us every day. There is nothing better than a smile on Lydia's face.
Wear PURPLE tomorrow for CHD!
Help us bring more awareness to Congenital Heart Defects - for those who live with CHD everyday and for those who have lost their lives to CHD.
Wear PURPLE on Friday, Feb. 12 and tell everyone why you are wearing it. CHD affects one in 100 babies. Today more adults are living with CHD than ever before.
Did you know that it's Feeding Tube Awareness Week?
Lydia has had a feeding tube of some kind since she was born. She started with a nasal tube before her heart surgery to introduce breast milk. After surgery she kept the nasal tube and eventually moved to a G-Tube. We were worried that with her laryngomalacia, re-flux and heavy breathing she might aspirate.
Her tube is a MIC-KEY button, which is essentially a little port that allows formula to go straight into her stomach. She takes all her fluid and medications this way. We mix the formula just like you would for any baby, hook it up to a pump, put the extension in her port and she's eating.
A few months ago we started oral tastes with Lydia so that she would know her mouth is for eating and she could experiment with tastes and textures. Oral tastes mean we buy the Gerber food for supported sitters and give her 5-10 tastes from a NUK brush about 3 times a day. Lydia doesn't care for a spoon and especially with teething, a NUK brush feels better. Lydia eats maybe a tablespoon of food at each sitting.
We'll continue to work towards more and more food and start to supplement some of her formula with these calories. When she's old enough we'll also start her on a blended diet so she is getting real food and nutrients through her G-tube. This will probably our longest and slowest moving challenge. We can just go have heart surgery, we can eventually get her trach out, but training a child to eat can be a long process. We'll get there, though!
Here are some myths and the real facts about tube feeding, just a quick overview: http://www.feedingtubeawareness.org/myths-facts/
Your love will carry her through. There are tons of prayers for Lydia too. I just have faith God will be with you and take care of her.
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