Hello and Welcome to our site! We hope to share our story along with inspiration, advice, trials, and smiles. We live a very crazy and blessed life with our little heart princess. We would love for you to be a part of it and join in our story. We welcome any stories, words of encouragement, advice, and prayers. Lilly was born in June of 2009. She was delivered by C-section with no indication that there were any problems. We had a normal happy first day together and the whole family was relieved and excited for the upcoming July 4th holiday. We were hoping to be home and able to enjoy fireworks together. The second day began normally with the usual test and nurses visits. Mom and baby were doing well. Mom was up out of bed and beginning to move around. The nurses came and got Lilly to do the newborn well check with the Peditarician. That's when things got bad. Grandma and sissy came to visit and were happily waiting for the baby to return but it was taking a l-o-n-g time. Mommy started to worry. I got this strange feeling in the pit of my stomach... I knew something was wrong. The Peditricain came into the room and said "Your baby's oxygen levels aren't where they should be. She looks a little blue. Sometimes they just need some help so I placed her in the oxygen tent. Her numbers still didn't come up to normal. We are going to wait a few more minutes and if they don't return to normal we are going to have to transport." I didn't know what to do, or say. My beautiful baby girl who had gotten a 9 on the APGAR? How could this be. I waited in shock afraid to ask why? A few minutes later the Doctor returned and said I have called, and a team is in the air, she needs to be taken to Children's Hospital right away. The usual cause of these low levels would be a heart problem. I don't know how serious or what kind she may have but we need to have her examined." At that moment in time I have never felt more insignificant and helpless in my life. To carry a child and rejoice in her life. To think she was healthy and have that joy taken away and know that you can do nothing to help... it's heartwretching. I was not allowed to leave to go with her, they would not release me. They said there was nothing I could do by going. To allow my husband to go and wait for the results. I sat in that hospital room and cried for hours, thoughts flying through my mind such as will I ever see my child again alive, will she be ok, why her why me, help us please God, don't let it be something they can't fix! My husband did go to Childrens and had to wait while many test were ran. In the end they found it was extremely serious. My daughter was born with Pulmonary Atresia (no Pulmonary Artery) and multiple holes and defects in her heart. The first concern was that she could not survive without a Pulmonary Artery. There was a small PDA (think small open connection) that all babies have when first born that normally closes in about 9 hours after birth. That small PDA was what was keeping my daughter alive. They were not sure how it was still open for Lilly. All we knew is it was and we had no idea when it would close. When it closed, it would stop the supply of oxygenated blood to her heart and body causing her to die. They lucky, (praise God) have a medicine which they can give to keep this PDA open. They could give this and then concentrate on how to solve the various other heart problems in her very special, very unperfect heart. They had issues and debates- her one side was small so they didn't know if it would grow, she had a large VSD, they needed to close the PDA and place a conduit from her Right Ventricle to form a Pulmonary Artery, this conduit would not grow with her so there would be multiple surgeries throughout her life, multiple surgeries means lots of scar tissue, they wanted to fix the holes by patching them, they wanted to try a complete repair but if her one side was too small and didn't grow they would not be successful but cause her to need a heart transplant, they weighed a full repair with a Fontan. The Fontan is a series of 2 surgeries that reroute the entire circulation of the heart. They were divided on what they wanted to do. They debated on her case and waited for other issues to resolve or be ruled out. There are syndromes and other genetic issues that they must rule out and look for. There were feeding issues. She could not suck through a bottle, not because she had any abnormalities but because she would exert herself so much just trying to feed. They placed TPN through a line but that would cause her veins to collapse. She had issues with formula being to hard for her oxygen deprived stomach to break down. They had to switch it many times to find the right blend that didn't cause fluid to build up in her abdomen. Through all of these struggles Lilly remained a very happy and pleasant baby. She was so peaceful we stared at the monitors to make sure she was still breathing. She was scheduled for surgury and then was rescheduled because of fever spikes. Given antibiotics and found that it was because of a heart drug they were using (but hey better safe then sorry) So finally at day 17 of life she had her first open heart. She received a rv to pa shunt. She had become unstable on the operating room table so they were not able to place any patches. New words made us nervous... terms such as urine output chest tube output, pacer wires, NG tube pic line, Ecmo, echo, blood gas, drips and SP02 were common words but made our hairs stand on end. If your not a heart parent then you honestly do not know what it feels like to see your newborn child lying with endless tangles of wire protruding from their body, several strange machines, monitors whirring, dripping and beeping. It is physically and emotionally painful to be able to look into your child's chest cavity and see their beating heart. Yes that really is the case you can see it. The very thing that can hurt your child is there beating away fighting hard to survive. What a love hate relationship. You fell as if it is your heart that is broken.and you wish that you could just say here take mine...because you would gladly give it to make your child better. When you are so frail and exhausted the endless parade of doctors nurses and general heticness of the CICU is a blessing and a curse. While you just want some alone time to spend with your child to sing talk to to bond without feeling as if every movement is being watched and shared by a stranger, when that very person leaves to take a short break or grab meds or wash their hands you actually panic and pray they hurry back because they are the experts they are the ones who can help. We were introduced to so many doctors form so many departments respitory nutrition, genetics, eyes ear and throat, vision, and so on. As each on came in to check on a new worry your heart gets heavier and heavier. You feel like you are fighting an uphill battle. It is hard not to get lost in despair. The nurses and doctors are wonderful to understand and help and console but it is still very hard. Again helplessness sets in. That is when we have learned to have faith and to trust God to know what is best for our child. We prayed and prayed and made peace with ourselves that no matter what we were not in control, we could fight, we could be with her and help as much as we could but through it all we had to surrender to God's will. We might be powerless but he wasn't. Lilly was healing well after her operation but she developed a blot clot in her thigh. She was having feeding issues and was not gain weight. Somehow through all of this we made it home WE were in the hospital 31 days. Her Stats were in the 80's and we knew a surgery was being planned for Jan. We were thrilled to take her to her home, we were scared for we now became her nurses. We had to learn how to place a subcutaneous catheter, to give her lovenox injections for her blood clot, to measure meds, place an ng tube and how to feed her. We were set up with weekly visits from a nurse to check vitals and weight. She was not allowed to travel in car or sleep with out an Oxygen monitor. (ugh it would go off every time she moved or kicked her foot, needless to say many sleepless nights and a very jumpy mommy) It was a the best and worst of times I know that sounds silly but we could now fight with her and do something. We had to take care of her and hold her and lift and carry her special ways and learn to sooth her cries after a shot. But we were fighting alongside her. We were a part of her struggle not just standing on the sidelines and watching We were in the game!
She was able to get rid of the NG tube a week after being home, she began to thrive and eat and grow. She was our miracle girl. She always was so Happy it gave us hope, strength and courage. Her smile made the troubles melt away. She was the weak one who made us strong.
In Jan 2010 she went back in to have a bidirectional glenn. We were worried again about complications and losing her. I always find that moment when you have to hand your child (who is looking well, doing well, and doesn't seem sick at all) over to the doctors for surgery is one of the hardest for me. I find it hard to hand over my child who trust and looks to me for love help and comfort to a place where she is going to experience pain and have to fight to live. I always want to turn and run very far away. it Kills me inside to know that this may be the last time she sees me , that she may come back to me different, she may loose her memory or have a stroke or just not understand why mommy gave her to people who hurt her. And yes she knows know that she doesn't like anyone is scrubs. They know. They learn very quickly. It's hard to explain how it's for their own good. It's hard to explain and very heard to experience. A child that Young doesn't know they are in danger or their body is not working right. All they know is that people are hurting or bothering them while you stand there and watch. I always expect her to be so mad at me when she wakes. Amazingly she isn't she never has been. She always wants held... which i can not do after surg. It's a struggle then to not scoop up your child and cover them with kisses and rejoice that they are alive . You just want to squeeze them and hold them so tight and never let them go. Instead you must look at the dreaded wires and machines as they they cover their little body. Let me tell you when the wires go you are so happy ! Anyways a quick hospital stay and an even quicker recovery was all she wrote. No complications, stats mid to low 80's and a sigh of relief to know the next surg. was not going to be until she turned 2. Sure there have been worries, there always are mostly with germs and development and well everything lol but it's been a pretty smooth ride so far. The time has flown and we have enjoyed all the hugs and kisses and laughs and smiles. Her surg is coming up so fast, only a couple of months away now, eeeek where did the time go? The nerves have begun to set back in...I'm crying sometimes watching her sleep or play, it's a hard process but one I wouldn't change or ever give up. We are so proud of our Lilly. Thankful for our family and friends. Touched by the generosity of strangers. We are so Blessed!
Thank you for sharing in our journey. Please share your story, comments, prayers, and questions!
