Monday, December 23, 2013
We are home, and cherishing every moment. It's truly a miracle that we have more time before her next surgery. It's been an emotional roller coaster, but God knows what is best for our little girl.
During her Catherization we received constant updates. They called saying they were going to try to open up her pulmonary valve by doing a balloon cath. It was unlikely that it was going to work, but it was worth the effort. Hours later Natalie came out of the procedure (already extubated), and the first thing the doctor said was she didn't need surgery. Michael and I just cried, hugged, and smiled. Samuel kept saying my baby is alright! I just love how Natalie continues to defy odds. This is nothing short of a miracle, and the best Christmas gift we could ask for.
I really struggled with this surgery. I didn't think Natalie was ready, or needed another surgery yet. Doctors know best though, so I tried to gather as much strength for her and Samuel. My heart ached and ached. It's never going to be easy taking her back for open heart surgery, but this was not the time. Natalie can grow a little more, and we can plan for our next trip.
The last day in Palo Alto we got a room in Ronald MacDonald House. My heart goes out to the families still there. We've been home for four months. There are several families still there, and will likely be there for a year or more. It's heart breaking knowing there are other kids hurting while Natalie is at home. Please take the time to pray and support these families. They need it more than you can imagine.
I don't about you, but I am so thrilled to be home with the family. We're are blessed with Lauren's company, and so grateful for her help. Samuel adores her, and of course is trying to butter her up. Christmas is just around the corner, and we plan to make it extra special.
We need continued prayer for health. No flu, colds, etc.
The Pierce Family
Sunday, December 15, 2013
Bags are packed! I can't tell you how anxious we are to get to California. I feel like it's been months since we found out about this surgery, yet it's only been a few weeks. Natalie had another echocardiogram last week which confirmed her pulmonary stenosis. Her gradient is actually worse than it was a month ago, so we are ready to get her little heart repaired.
This week our family had the opportunity to take part in the Sparrow Club assembly for Natalie. The Sparrow Club encourages schools and donors to take part in adopting a medically fragile kid. I had no idea the enthusiasm of 500 elementary kids would move me the way they did. They cheered Natalie's name, sang songs, and pledged to raise $2500 to pay back the local donors. At the end of the assembly a young boy came running up to me and handed me some cash. He took every last dollar he had on him and gave it to Natalie. I don't know about you, but my heart aches with thankfulness.
This last year has changed me and my family. We don't take a moment for granted, as we know so well how precious our lives are. I savor the sweet moments with Natalie. Often it's just watching her play, or kissing her sweet chubby cheeks. I look at her with amazement and awe. I watch her with Samuel and wonder what their future holds. I wonder if she knows just how much she is loved.
Please continue to pray for our precious little girl.
The Pierce Family
Thursday, November 28, 2013
So thankful to be home with my family today. I am especially reminded of my blessings, and how God is in control of everything. He is my delight, and rock. He is faithful, and will continue to guide my family.
My heart aches knowing that Natalie is going back for another heart surgery so soon. I imagined her being much older before her valve would be fixed. I can hardly think of letting her go, but deep down I know it's best for her. The first time around was difficult, but knowing what we are in for makes this journey harder.
Dr. Reddy feels that it's best to operate soon because her right atrium is pumping extra hard. It's very clear on an Echo that Natalie is working hard to pump blood, so we decided to go to Stanford in December. Her CATH procedure is scheduled for December 19th, and open heart surgery on December 20th. The CATH is going to hopefully show the exact size of her valve, and determine which procedure Dr. Reddy will do. It is likely that he will do a Rastellie procedure. This procedure is much simpler, and should take less than 6 hours, and one hour on by heart/lung by pass. There are so many complications that can arise, but we know a lot about Natalie's little quirks. Hopefully we can minimize potential issues.
We're on a wait list for Ronald Macdonald house. We will know more about our housing early December.
She is our little miracle. Everyday I just melt over her precious smiles. She recently started rice cereal. Right now it's only tastes, but I am hopeful she will continue to consume more. It seems as though she enjoys it, and is not showing signs of aspiration.
We also got her soft band BAHA device yesterday. Feeling blessed that they offered to lend us on until she gets tubes placed in her ears. Her right ear is hearing much more, but her left is still severe.
We'll keep everyone posted as we learn more.
The Pierce Family
Saturday, November 16, 2013
We're home....There is nothing more sweeter than being home with the family. Our five day stay started to get tiring on all of us. Hospital stays are never fun. Poor Natalie was so bored. Her toys only kept her entertained for so long. She knew she was at the hospital, and was ready to get home.
She has been teething a lot the last few days. No teeth yet, but I'm sure in the near future one will pop through. She has been waking up during the night, and is becoming more habitual for her. All I know is that we need our sleep. Waking up at 3 am is not alright....
So we missed our ABR (hearing test) at OHSU. We go back the third week of November. We can't wait for her to get her hearing device. She is smiling and laughing more and more, and I know the device will encourage her to interact more. We've also noticed the quality of her voice is improving. Although she has a long way to go, I am starting to believe her vocal chord paralysis was likely due to her heart surgery, and not associated with CHARGE.
We're still patiently waiting to hear back from Dr. Reddy. I'm telling myself no news is good news. I can't tell you how saddened I am knowing that Natalie is going to need heart surgery again, and probably in the near future. The first time around was hard, but knowing what your in for makes it so much more difficult to except. I just pray that God works a miracle in our baby girl. He is bigger than any heart disease. Miracles happen everyday, and I ask daily that God would spare another heart surgery.
God is our refuge, and in him all things are possible. During our first hospital stay I met a wonderful friend and who also had a daughter needing heart surgery. She often reminded that it may seem as though we are living our worst fear, but in reality we are conquering our worst fear.
We're needing prayer for a multitude of things, but I ask that you specifically pray for Natalie's valve to grow, and that her arrhythmia's can be managed.
Thank you for your continued support,
The Pierce Family
Friday, November 8, 2013
I feel terrible that it's taken to long to write, but I have time as Miss Natalie sleeps away. Last week Natalie was sent home on HOLT monitor which detects heart arrhythmia's. Unfortunately she had several tachycardia's. Needless to say she needs to go back on anti-arrhythmic medication. She was admitted at our local hospital for observation. She was started on meds yesterday, but recently stopped them due to complications. She will begin a new drug tomorrow afternoon, and will be monitored for 48 hours. Hopefully this one works with little side effects. She should be discharged Monday afternoon. We're also waiting to hear back from Dr. Reddy who is her surgeon regarding her Pulmonary Stenosis. To make things even more challenging Natalie may need to go to CATH lab sooner than later to get a better look at the Pulmonary valve. Our hope is that they can repair the valve at the CATH lab, however there is a possibility she will need another open heart surgery. We're trying to be optimistic and hopeful. Natalie continues to do better than expected, and is so strong. She is not in immediate danger, so just continue to pray that the valve grows.
We're excited to get her hearing devices this week. I can't wait to see her response. She is starting to giggle...Michael and I have to work hard for the smiles and laughs, but man when she does it's priceless.
She met with a developmental pediatrician today. He is hopeful that she will get all of her nutrition orally. She is so interested in oral stimulation that she should transition to oral feeds as long as she does not aspirate.
We're finding it very difficult to move forward with any financial aid. We've been told we don't qualify for disability, and that Oregon does not consider CHARGE syndrome to be an intellectual disability. Please pray that we can get medicaid to supplement our private insurance.
Michael and I are staying at the hospital (taking shifts)...It's funny how doctors and nurses respond to Natalie..We're so used to her breathing and sleep apnea's. We just want to make sure the nurses to intervene unnecessarily.
Michael and I are so thankful for everyone's support and love. We're truly blessed and experience God's faithfulness each day. We ask that you pray that God continues to give us wisdom and keeps us healthy.
The Pierce Family
Thursday, October 10, 2013
It's been a busy week with appointments. Last week Natalie had another ECHO, swallow study, and went to OHSU in Portland. Our favorite pediatric cardiologist came back from a long vacation, so we're extremely happy she is back and taking care of Natalie. We are still waiting to get her ECHO results back. There is a slight possibility that her valves aren't growing, but right now it's a waiting game. Our doctor is going through the last three Echo's to see measure her valves, and Pulmonary Stenosis. We were sent home with a HOLT monitor which tracked her heart rate for 24 hours...and guess what? She is off her arrhythmia medication. There are no sign of any arrhythmia's.. I am so happy. We have another ECHO next week, and will be sent home with a HOLT monitor just to make sure. We also found out that her hearing loss is more severe than originally thought. Her right eye is still registering mild-to moderate, and her left is moderate to severe. We're doing another repeat test next month in hopes of finding the location of hearing loss so we can move forward and get her the appropriate hearing device. The plan is to have her using a device before she is 6 months old. Her Coloboma affecting both her retina and optic nerve. We have an option of patching her right eye to help strengthen her left eye, however , there is no "proof" that patching can help with optic nerve damage. She probably won't use her left eye much and will compensate with her right eye. She will wear glasses to protect her good eye..
Now the fun stuff. She is developing so much. My sweet girl loves her toys, especially her light up ones. No smiles yet, but I can see that she is starting to be more interested in interaction. Samuel adores her and loves being our little helper. She started bottle feeding, but does not want to latch. Hopefully she will learn soon. My hope is that she will be able to sit and keep her head up this month. She weighs 11lbs! I love that she is finally growing out of newborn clothes. She is equally sweet as she demanding. She refuses to nap in her bed during the day. She will nap all day long if I hold her. I'm hoping she will get used being in a sling or carrier...
As we all go through this journey and watch Natalie overcome so many challenges be reminded that God is bigger then it all. He is bigger then CHARGE, and made her perfect. I fall more deeply in love with this precious girl each day. I'm amazed already. God is faithful, and is holding her in his hands.
Sunday, October 6, 2013
So our story begins. After a lot of thought I've decided to write about Natalie in hopes that her journey will inspire others. She is my inspiration, heart, and world. Bringing her home has been the most joyous time of my life. Although there are the challenges of bringing home a new baby, I adore every moment with her. I love holding her on my chest as we dance, kissing her cheeks, watching her stick her tongue out, playing, bathing her, and most of all watching her grow. I didn't know if I was going to be bringing her home. Before she was born I imagined what life was going to be like with her. I truly had no idea that my baby girl would open my eyes up to a whole new world. I had no idea that God would use her to teach me the depth of faith, absolute love and grace. I am blessed, and cherish my days with her.
God is our strength and healer. I think back through our hospital stay, and I remember moments of complete and utter peace. Sitting and looking at my baby who just came out of open heart surgery I knew that her guardian angels were with her. There was a lot of chaos with getting her set up in the room, doctors coming and going, and a ton of machines, and yet there was peace. Nothing prepares you for seeing your child in so much pain. It's crazy how being in the Cardiovascular Intensive Care Unit becomes normal. Day, by day we waited for Natalie to get better. It felt like every time we got close to discharge something crazy happened. Her sugars crashed, possible seizures, increased work of breathing, infection, feeding issues, etc.One day she would be doing great, and then the next she required some sort of intervention. It felt like it was never going to end. Luckily, Natalie was diagnosed with CHARGE early on so the doctors were prepared for many of the unique symptoms associated with the syndrome.....
That brings to me to second part of our story and our new life. Natalie was born with a rare and complex syndrome called CHARGE.
"CHARGE syndrome is a recognizable (genetic) pattern of birth defects which occurs in about one in every 9-10,000 births worldwide. It is an extremely complex syndrome, involving extensive medical and physical difficulties that differ from child to child. The vast majority of the time, there is no history of CHARGE syndrome or any other similar conditions in the family. Babies with CHARGE syndrome are often born with life-threatening birth defects, including complex heart defects and breathing problems. They spend many months in the hospital and undergo many surgeries and other treatments. Swallowing and breathing problems make life difficult even when they come home. Most have hearing loss, vision loss, and balance problems which delay their development and communication. All are likely to require medical and educational intervention for many years. Despite these seemingly insurmountable obstacles, children with CHARGE syndrome often far surpass their medical, physical, educational, and social expectations".
Natalie was born with both major and minor characteristics of CHARGE. As we continue to meet with doctors she may exhibit other symptoms associated with CHARGE. She currently has vision loss, hearing loss, increased work of breathing, chornae atresia, facial palsy, vocal chord paralysis, and a repaired heart. She is our little fighter, my overcomer. She is one strong and determined little girl. I can tell you that she is like any other baby. She cries when she is hungry, dirty, tired, and over stimulated....and let me tell you she lets you know when she is not happy. She is at peace when she is loved. She loves her spa time, and loves her pacifier.
I hope this blog brings you inspiration. Our journey just begun. This blog with chronicle her triumphs and challenges.