Mark's Heart

Before I begin I have to say that I believe that people are put here on earth for a specific purpose and now that we have gone through a lot with Mark I would have to say that Mark has helped out this family a lot.  He has helped to heal relationships that I couldn't do, but because he was born and with the diagnosis of Downs he has forced us to forgive and to move on and ask for support where needed.    Finding out that Mark had Downs was a shock and it was scary because we knew nothing about it.  But what made it scarier was realizing that there could be potential health problems that could crop up and put extra bumps into a road.  But I have learned with Mark that if we don't have these extra bumps in the road then we are not fullfilling everything God wants from us.    When Mark had been born there were no issues that they found so we left the hospital truly feeling good about everything and that all was well with Mark.  Mark's pediatrician wanted him to follow up with the cardiologist just to make sure that all was well with his heart. Since we were positive that his heart was fine we were not in a rush to get to the cardiologist and scheduled his appointment with the doctor for the next available appointment that she had which was the first week in December.  Then we went on our much anticipated vacation to Disney World during Thanksgiving and then to grandma's house in South Carolina.   When we returned back home to New Jersey it was the day before Mark's appointment and because I was tired from the trip and looking at the mess that we had and realizing that by the end of the month we would be moving I felt inclined to cancel Mark's appointment and just schedule with a doctor in South Carolina.  But I felt a gentle nudging by God to keep the appointment as planned.   Since I had no one to watch my two older boys I ended up taking everyone to the cardiologist.  It was quite a challenge to say the least having young children at the cardiologist is not the most appropriate place for them since they need to be quiet, which is hard for a 3 year old and 21 month old.  But I thank God they were with me because they helped me to feel sane when we were there.  I needed them because as soon as they hooked Mark up to the ultra sound machine and started going over his heart I saw the BLACK and knew with out the doctor saying anything that I was looking at the DREADED HOLES.  My boys helped to keep me from dying right there, I didn't want them to see mommy losing it all.  There was more than just those holes there was also just the one valve for the whole heart, but I couldn't see it on the ultra sound because I did't know what to look for with that.  The doctor brought us back to her office and explained everything to me and told me that when Mark was about 6 months old was when he would go ahead and have surgery.  I told her of our plans to move to South Carolina but that we had every intention of coming up to Philadelphia to have the procedure done at CHOP. She said that it would be fine and that she had a couple of doctors down south that had been partners with her that she would like for us to follow up with until Mark had his surgery.  She did advise that she would like for Mark to have weight check done every other day with his doctor just to make sure that he was doing well.   Once I got out to the car I broke down and then I called my parents and they prayed with me that all would be well and that I would be strong when I told Guy. Telling Guy was hard because his faith in God is not as strong as it should be.   So I had worked it out with Mark's doctor to allow us to come in from the back of the office so that way we would not have to go into a waiting room with the other sick children (especially since this was the time of the H1N1), and we were going in 4 days a week to make sure that his weight was staying the same.  Thank God for doctors that are so proactive, we went in for Mark's scheduled weight check after the weekend and found out that in just 1 days time that he had lost 4 ounces.  This raised a red flag with the doctor and he told me that he felt that Mark was experiencing heart failure and that he did not want to wait for another weight check to see what was happening. He called the cardiologist and told her what was happening.  The cardiologist called and said that she was not concerned to the point where Mark needed to be put into the hospital right then and there, but she did want to see him the next morning. She did not want him in the hospital because she said that she knew that they would stick a feeding tube in him to start putting weight on him and that she just didn't want that to be done to him.   The next morning at the cardiologist we found out that Mark had lost a couple of more ounces.  The doctor got right on the phone to find out how soon Mark could have surgery.  So we found out that he would have it on December 29,2009 at 10 weeks old.  Mark was placed on a high calorie diet and we were told to keep him in quarantine until the day that he was to go in for all of his preop testing.   Some may think I am crazy when I say that God had his hand in the situation.  We were suppose to move during the week of Christmas, if we had done things as planned Mark could have gone through heart failure during the trip or right after the move.  Possibly not allowing us enough time to get him back up to CHOP.  Things just worked out perfectly, one of the top doctors in the country had just opened up December 29th he had decided not to take off for the whole holiday week.  Then our landlord said that he had another family to move in to the house but he told them that it was not available allowing us to stay there for another month.   That fateful day fianlly arrived and with snow coming down at 5AM we took off to the hospital with my very fragile son.  Praying that God would keep his hand of protection on us we got down to the hospital an hour before we were suppose to.  We were both a bundle of nerves over everything and I just kept wishing that 8:00 would hurry up and come.  One of the most traumatic events in my life was not Mark's surgery but it was me carrying my beautiful baby up to the operating room doors and giving him a last kiss and praying my last prayer over him as I held him in my arms.  Then we met the surgeon and he put us at ease and as I looked at him I thought oh my goodness his hand is bigger than Mark's whole chest. I hope that he will be able to perform the surgery.  I then prayed for the surgeon Begging God to guide the surgeons hand and for him to be responsive to God's will.  The surgeon told us that the surgery would more than likely be 8 hours or longer.  More than 8 hours I threw a quick prayer up that Mark would feel angels around him during this time since I would not be near him for such a long time.   So Guy and I went down in the lobby to the McDonalds and grabbed breakfast and quickly dashed back up when we saw that it 8:30.  Our nurse came to us and told us that Mark had been successfully put to sleep and that he was doing well under the anesthisa.  We were shocked when at 10:00 the nurse came back to us and told us that the surgery was over with and that it had been successful.  We were told that we would be able to see him in about an hour.  He warned us that it would be scary to see our son because he would be hooked up to all kinds of machines and that he would be kept asleep for the rest of the day and slowly woken up tomorrow.   And I could just kick myself how could I have possibly forgotten the camera to take pictures of my sweet sweet son.  But the images of my son are forever burned into my brain of what he looked like hooked up to all the wires that were pumping oxygen and pain killers into him.  To see my small little man laying there and whimpering in his sleep killed me, but at the same time it gave me so much hope that his heart was fixed and that he would be able to live a healthy life!   Mark was kept in the NICU for just a day before he was moved out onto the recovery floor.  They said that he was doing so well that he didn't need the constant supervision that one needs while in the NICU!!  He spent 5 days on the recovery floor where the nurses just adored him and liked to bring him out to the desk to keep them entertained when we were not there or his cousin that worked there in the hospital. Here are some pictures of my gorgeous son after his surgery

A gift from grandma to soothe him.

Time for a bath

Kelly,

Praying God's Blessings