Alec

Our son Alec was born on June 2, 1998 after a complicated pregnancy. I had preeclampsia and was on bed rest. Alec was delivered by cesarean at 36 weeks and was only 3 lb. 13 oz., but he was FINE! No O2, no IVs, nothing! We thought "We made it! He is fine!" But they kept hearing a murmur. Finally one of the doctors told me that they kept hearing it, and I informed him of my husband's very complicated family history of CHDs (we had actually had 17 sonograms during my pregnancy that showed a perfectly fine, although small, baby). They ordered an echo... TETRALOGY OF FALLOT. We were beyond devastated (as all of you can understand) but were preparing for a surgery at 8-10 months old. Unfortunately, he needed a B-T Shunt at 4 weeks, and our lives changed.

Alec coded 12 hours post-op and our lives spiraled out of control. He was on 12 I.V. pumps, and was SO SICK. We knew that he was barely alive. We then found out that the shunt had clotted and they tried balloons via cath and everything to keep his vessel open, to no avail. Finally, they told us that we had an hour and a half to say goodbye. Oh how we cried! We sung songs, we prayed and made promises and cried some more. We took pictures and told Heavenly Father that if he really had to take him that it was ok. And we cried. And off Alec went for another, experimental cardiac cath, to put a stainless steel stent into his pulmonary outflow tract. And he was coding on the cath table. I said to my husband, "He is not even going to make it to the cath!” And then they shut the doors to the cath room. And we knew that it was the last time that we were going to see him. But we were wrong. We got our miracle!! He was alive! And (we were told) the only child in the world with Tetralogy of Fallot to have a stent in the POFT, and we began to find out how truly last-ditch this effort was to save our child. And how much our doctors put on the line, doing such a thing. (Thank you Dr. Steven Shapiro, Inova Fairfax (Virginia) Hospital for Children)

Alec had been hospitalized for 2 weeks at this point, and we thought, ok we have our miracle, lets go home! Little did we know that Alec would spend the next 6 MONTHS in that PICU with complication after complication and would come home after months negotiating with our *#?% insurance company for all the medical supplies, and nursing that we would need at home…. BECAUSE ALEC WAS COMING HOME WITH A TRACHEOSTOMY, A VENTILATOR, O2, A G-TUBE AND A NURSE 24/7. And $8,000 worth of medical equipment a month. (yikes!!!!!)

We were so glad to be home, I had LIVED in the PICU with him, I didn't go home for 6 months (not even once). He was my job. He was 7 months old and weighed 10 pounds. We knew we had to fatten him up for his next surgery. So we did. In 4 months he weighed 21 pounds and had his complete repair. We were terrified we would have so many more complications, but he did wonderfully. Six hours post-op he opened his eyes, saw me and blew me a kiss. We knew he was fine! He did have 3rd degree heart block and required a pacemaker, but he was home in 2 WEEKS! Shortly after, he had surgery for a bilateral inguinal hernia and undescended testes. And then we moved from Maryland to California!!! With a nurse, vent, pulse ox, feeding pump on the airplane! We did it! This is where I grew up, this is home.

That was summer 1999, and these last years we have seen all of the blessings that we were promised by Heavenly Father come to pass. Alec had his trach out in April 2000, his G-Tube out in July 2000. He is now 5˝ and is a BEAST! He is wild, defiant, loving, strong willed, silly and all of the things that regular 5 year olds are! He is still a bit small for his age (he looks like a 4 year old—we still are dealing with those first 7 months in the PICU!) but he is doing so well. He is in preschool and still gets PT, OT and speech therapies. We also now have a little girl, Maclaine, that has a healthy heart and is one year old. He is a great big brother!! When I see his white-blonde hair and grey-blue eyes, and I remember how sick he was, I just can't believe that we have survived it, we both are in awe at the blessings that we have somehow been given.

But with this all, I can be transported back to all of the fear and uncertainty, the anxiousness, in just a second I can be right back in that PICU emotionally. And I remember (can I ever forget?) the sorrow that ripped through my soul when parents that had become close friends lost their children in the rooms around us. I wish that I had known about all of you. For so long when I read all of your posts I thought "Alec's heart isn't even our biggest issue! He is having trouble breathing!” But now I know how much you all support and lift each other. I feel blessed beyond belief to be apart of such a wonderful group, but mostly, to be Alec and Maclaine’s mommy. This journey of CHD has been difficult and we frequently thought that we could not bear the pain, but our story has ended happily and we are enjoying every minute….WE BELIEVE IN MIRACLES!!!!!