Madilyn Alivia Gettis born with Tricuspid Atresia

This is wrote from the perspective of Maddie’s Grandmas Lorraine and Cindy

Maddie will be joining us on or about July 1st 2010.

Lindsay and Eddie are anxiously awaiting her arrival. She will be born at Children’s Health Care of Atlanta at Egleston. She has a Congenital Heart Defect called
Tricuspid Atresia or TA. She will need to undergo open heart surgery when she is born. A procedure called Pulmonary Artery Banding will be performed on Maddie. This will decrease her blood flow to her lungs. This surgery will be the first of three that she will need in her first few years.

We are deeply grateful for the many friends, family and neighbors who have given us all so much love and support. We are sincerely grateful to the US Navy who have shown utmost consideration in allowing Eddie the leave time to be with Lindsay in Atlanta. Maddie has a great start………A pediatric nurse for a MOM and a proud Navy Corpsman for a DAD. Not to mention the countless wonderful people who’s thoughts and prayers are always with us.

Monday, 28th June
Lindsay went for ultrasound and the docs felt it was time to admit Linz to Labor & Delivery. One grandma already in Atlanta, the other on her way.

Maddie decided to join us!!! She was born 29th June @ 10:19pm……….7 lbs 9 0z. 20.5″ long. …………….Lindsay was induced at 4am and after a long, long day of
labor….Maddie arrived………She is doing wonderfully!!!!!!

1st July 2010 Maddie UPDATE
Went to visit Maddie today. She was moved to a “step down” unit in the Neonatal Intensive Care Unit (NICU). We all met with the Cardiologist. Great news for now is that the Pulmonary Artery Banding surgery has been postponed and will take place in approximately 6-8 weeks. I will try and explain the best I can, why this can wait.

Some babies with TA have a significant blockage in their pulmonary artery which requires immediate surgery called BT Shunting. This would increase the blood flow to their lungs.

Some babies have a moderate blockage where the blood flow to their lungs is at a moderate level and would require either the banding or the shunt procedure depending on their blood flow. In some instances the first surgery is not needed.

Babies, such as Maddie, have no blockage in their pulmonary artery and have too much blood flow to their lungs. They would require what is called Pulmonary Artery Banding. This surgery would place a rubber band type item on their pulmonary artery to decrease the blood flow to their lungs.

The Cardiologist feels that right now because Maddie is very stable and her oxygen levels are well above normal for a child with TA, that the Banding procedure would be put off until Maddie develops signs of heart failure. It is important to know, the heart failure they are referring to is not a sudden thing such as a heart attack. It is a progression that would take place over the next month or so. Maddie would become short of breath and tired along with a few other signs. A major concern is that a baby showing signs of heart failure would be too fatigued to eat and would therefore not be able to thrive.

In saying that, they feel it is best that Maddie go home with Lindsay and Eddie to Pensacola to grow as much as she can over the next month as possible. It is much safer to have this surgery when she has grown and gained more weight.

Maddie will be seen in Pensacola by her Pediatrician and also by her Pediatric Cardiologist on a regular basis. The Cardiologist, who works closely with the Pedi-Heart
Team in Atlanta, will determine the best time possible for her to come back to Atlanta.

The GREAT NEWS of the day is that Maddie is GOING HOME, hopefully this weekend. Please have all of them in your thoughts and prayers. In addition to becoming Heart Parents they are still NEW parents. They are doing wonderfully, are excited and scared and are ever so grateful that they are getting to spend this precious time with their new daughter.

2nd July 2010
Great Day visiting with Maddie. She’s doing well and we’re hoping her weigh-in tonight shows her gaining weight. Doc’s want to make sure she’s growing well before she can go home. Hoping for Sunday or Monday!!!

3rd July 2010
Keeping our fingers crossed……Docs say Maddie should be able to go home tomorrow on the 4th of July!!!!! 6 hour drive to Pensacola and she’ll be home for 4-8 weeks before she comes back to Atlanta for her first surgery. We are so happy that Lindsay and Eddie get to take her home with them.

4th of July, 2010
Maddie got released from Northside Hospital. She’ll be spending the night at the Ronald McDonald House with mom & dad and will make the trip to Pensacola tomorrow!!!!!! Happy 4th to ALL!!!

6th July 2010
Maddie went to her 1st Pediatrician appointment today. Doc says she’s doing good & is a beautiful baby!!

10th July 2010
Maddie is still stable. Eating well and is not a very fussy baby. Loves to be held. Her first cardiologist appt is on Monday 7/12 at Sacred Heart Hospital, Pensacola. We’ll keep you posted.

12th July 2010
Great news from cardiolgist. Maddie’s VSD (ventricular septal defect) is not as large as they originally thought and there is a chance she might not have to have the pulmonary artery banding at all. They may just be able to go right to the “Glenn Surgery” Time will tell!!

19th July 2010
Maddie doing good….Growing and eating well. She slept for a 6 hour stretch the other night. Next Cardiologist visit is Thursday…..

Another “good news” check-up with the cardiologist!! Maddie’s oxygen saturation level or SATS are still really good at 91% and she is growing and gaining weight. Doc is hopeful that Maddie is on the right track so far to miss out on the pulmonary banding surgery and have the Glenn Shunt Surgery when she’s around 4 months old. She’s staying awake for longer period of times and is now rooting for the Yankees!!

To continue following Maddie’s progress please visit her website Mend Maddies Heart

Lorraine Gettis has kindly given CHD-UK permission to use the photographs on this page.
Recipes from the Heart

Dear Friends & Family

Maddie’s Grandmas Lorraine & Cindy are in the process of putting together a cook-book to sell to help Lindsay & Eddie pay for non-medical bills. For the time being Lindsay is a “stay at home mom” caring for Maddie and they are living on Eddie’s small Military salary. The main goal of this cook-book is to help them pay for student loans that cannot be deferred, until Lindsay is able to return to work as a Nurse. Please go to the “Contact” page and email us your favorite recipe through the “contact us” link. We look forward to hearing from all of you. Please include
your Name, City & State and connection to Maddie or the family
Thank you!!!