Maddie's heart story recap...

I never thought I’d know so much about the human heart, especially what could go wrong with it but when our third child was prenatally diagnosed at 26 weeks with a Congenital Heart Defect (CHD), a new world opened up for us. Our baby’s heart may have been broken but our hearts were shattered that day. We learned that without intervention, she would not survive and we were given three options: termination of the pregnancy, a three-staged surgery, or the comfort care method which was to take our baby home and let her pass away. We were lucky to have the surgical option and chose the three-staged operations route. Our “heart journey” quickly began.

Madison Grace Allred, “Maddie” decided to unexpectedly join our family on March 13, 2008, arriving a month early by an emergency, crash c-section at the University of Washington Medical Center in Seattle. Her birth was a very scary experience and we all feared the worst with her early arrival, but we quickly learned that our 5 pound baby girl was tough and would overcome any obstacle that came her way! After stabilizing Maddie, she was transferred to Seattle Children’s Hospital Cardiac Intensive Care Unit where her CHD diagnosis was confirmed: Pulmonary Atresia with Intact Ventricular Septum, Ebstein’s Anomaly, Atrial Septum Defect, Patent Ductus Arteriosis and Hypoplastic Right Ventricle. In short, the right side of her heart was severely underdeveloped and simply non-functional. On day 6, Maddie underwent her first open-heart surgery called the BT Shunt which basically created a bypass to get the blood to her lungs for oxygenation since her own anatomy did not suffice. She did fairly well post-op and after spending her first 19 days of life in the hospital, she was discharged and finally able to come home! It was a bitter sweet moment for us. Maddie needed a feeding tube the first few weeks after coming home but finally regained enough strength to orally bottle feed. But we knew that our stays at Children’s were not over…in 4-6 months, she would outgrow the shunt and need another surgery in order to survive.

At exactly 4 months of age, Maddie underwent her second open-heart surgery called the Bi-Directional Glenn. She cruised through her recovery and was home just 5 days after another big heart surgery! During this stay, we also learned that Maddie's kidney's were not growing symmetrically and our appointments with Nephrology began. She had a VCUG and this showed grade 3 and grade 1 kidney reflux. Luckily, she hasn't had any UTI or kidney infections and we've been told this is something she should grow out of. For the meantime, she is on an antibiotic, Bacterim, a UTI prophylaxis. The doctor's don't believe this is heart related, just an "added" challenge for her.

Since her second open-heart surgery, Maddie has been growing and thriving. She is developmentally on track despite her early birth, hospitalizations and procedures she’s endured. By looking at her, you would never know she has such a special heart. She is cyanotic (bluish tinge to her skin) since her oxygen saturations hang around 76-80. She is now on only 2 medications and we visit her cardiologist every 3-4 months. We are waiting for her third open-heart surgery called the Fontan Procedure which is usually done between 2-4 years of age. Upon completion of this stage, her heart will function as a single-ventricle, the left side of her heart doing all of the work while blood just passively flows to her lungs. She will be a single-ventricle or half-heart for her lifetime. Even though we are not “out of the woods” yet and coping with a heart defect is not easy, Maddie has shown us a strength that we can all admire and strive for. She is our little miracle and brings such HOPE to our family!

Update Summer 2009:
Maddie is doing wonderfully! She's walking, almost running, everywhere and into everything. We couldn't be more blessed. This spring she was having trouble maintaining her sats above 75. Her O2 saturations should be anywhere from 75-85, so she had her third cardiac catheterization with Dr. Jones at Seattle Children's in April. He was able to coil off two major collateral vessels by placing 4 metal coils in them. She has a tendancy to grow these veno-venous collaterals and may need another intervention in the future. Her 02 sats baseline is still a little low, hanging at 76-78. But she seems to tolerate this well and her Glenn flow shows no concern at this time. As for medicines, she's only on 1 baby asprin a day for her heart and Bacterim for her kidney reflux. We're even on 6 month visits with her cardiologist!!! Life is good :)

Update Summer 2010:
Miss Maddie continues to amaze us with her strength, endurance and "normalness"! We never expected life to be like this with her at 2 years old. She's simply a joy and adored by our whole family. A princess indeed! In May, she had another heart cath due to the trending down of low oxygen saturations (70-74%). Her left and right pulmonary branches were very tight (stenosis) and needed ballooning via cath. This has brought her O2 sats up to the higher 70's range and she has had so much more energy! She was quite blue and lethargic this winter/spring prior to the cath so this is tune-up was just what she needed. She's only on 1 baby asprin a day and a multi-vitamin with iron! She's been off of the Bacterim for her kidney reflux since her 2nd birthday and hasn't had any infections. Maddie's on quarterly visits with her cardiologist right now and we're just focusing on living life and getting calories in her. She will still need another surgery to complete the staged-repair of her heart. Most likely, this will be in the next year or two. We're so grateful for this sweet little girl.