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