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First I want to say thank you to everyone for all your support, love, and prayers for our little guy. It means so much to us, and I'm sure it means a lot to him as well.

I'd like to talk a little about what it's been like for us these past few days, before we head out to spend another day in the PICU with Corey. We thought that we had a good chance of making it to the Glenn shunt (the surgery at 6 months) without having to have another procedure in between. We also thought Corey was doing very well at home with us. His color was pink. He was eating well, sleeping well (or at least consistently - you all know how newborns are), and generally acting like himself, funny faces and all. Our only indication that there was a problem was a sudden drop in his O2 sats to the high 70s, low 80s. So, when we went in for the emergency echo, we were frankly shocked when the cardiologists said, "We need to bring him in for the shunt immediately, and we want him to be admitted through the ER". I'm sure I turned white as a sheet. We couldn't believe this was happening, and so quickly. I thought about the night before when he'd woken up for a 4 AM feeding, and wished that I'd spent more time rocking him in my arms before putting him back down to sleep.

We went to the ER, which was a nightmare. Some tech who had no idea about his heart condition stuck him in the hand unsuccessfully, and he screamed as his sats plummetted. I made her stop before a second attempt so that I could comfort him and quiet him down again. Thankfully the second stick was successful, and again I had to comfort him and quiet him down. The next several hours were spent waiting for a room in the intermediate care unit, trying to keep him calm. We were eventually sent upstairs, and when we arrived, we had yet another heart stopping scare. The tech in the ER who did his EKG left the stickers on Corey, so when we went upstairs, hours later, they were so stuck to his skin that they were very painful to remove, and my poor baby screamed his head off, turned blue, his heart rate reached 220, and his sats went all the way down to the 40s. Thank God the nurse there was on top of it and had the oxygen ready - she was able to help him and bring him back up to the high 70s. I thought I was going to crack for sure at this point, and that was just the beginning.

The surgeon came to meet with us to explain the shunt and when it would be completed. They decided it would be done the following afternoon, and that our main goal in the meantime was to keep Corey calm to stop his sats from plummetting. With no food allowed after midnight, and with people continuously poking him and prodding him, this was very difficult and stressful. Damian and I slept next to him on a tiny cot and spent all our time that night and the next day until he was taken for surgery using every trick we could think of to keep our baby calm. It was a rough night and day.

Finally, at 2 PM they came to take him down for surgery. Damian and I went into the OR with him until he fell asleep, kissed him on the head, and then went to the waiting room for the long wait until the surgery was complete. We had to stop in the hallway and hug each other - neither one of us could believe that they were about to crack our baby's sternum and muck around in his heart. I tried not to think about the consent forms that I'd signed, knowing that there was a 5% chance my baby wouldn't make it through the surgery. I tried not to think about anything. It must have been the longest day in recorded history.

Finally, after several hours, the surgical team came out. We leapt out of our seats and ran out to the hallway to see him. Corey was there, too, on a huge stretcher, looking tiny, but with his little blue eyes open! He had made it through! I've never felt such relief in all my life. The surgeon told us that things looked good, and he felt that the surgery was a success, though difficult because Corey is so little. They got him settled in the PICU, and then we were allowed to see him. He looked so small in that huge stretcher bed, with all the tubes and wires attatched to him - poor baby! But he was out, and on the road to recovery.

Our days now are spent trying to give him comfort. He's in pain, and now they can't feed him because his chest tube is coming out today. It's hard to see him hurting. And it's hard to see him doped up on the pain medication. His eyes roll back into his head, and you know he can't see you. No person should ever have to see their child like that.

With that, it's time to go see my son.

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4 comments:

Jenn and Damian,

I am glad to hear that Corey is doing better. I continue to keep him in my prayers. He is a beautiful baby. I know this is so hard on you both. Please let me know if you need anything.
by: Christine Marinaccio (contact) - 12 Mar '05 - 11:41
I'm glad to hear he is doing better. I'm so amazed at your strength in all of this. Know that I am always here as a shoulder to cry on if you need one. Take care of yourselves and know you will always be in my prayers.
by: Shannon (contact) - 14 Mar '05 - 11:22
Jenn and Damian,

My son was also born with a heart defect. (Interrupted Aortic Arch, with a large VSD and ASD, ventricular stenosis and problems with reflux. At 3 weeks old he had his first open heart surgery that was eight hours long. Before we could even get that surgery it was a two week wait, because after Hurricaine Katrina, the Children's Hospital in New Orleans was the only hospital that can do surgery on Children's heart. That was the longest two weeks of our lives. I often asked my self, lord why me, I go to church every Sunday, I participate in every ministry at church, I am always helping people. This is just too much for me to bare. You said you wouldn't give me more than I could bare. All of my younger and way older cousins are having babies left and right and their babies are fine. Why do I have to go through all of this pain. The day of surgery my chest had gotten so tight. I had a lot of support. In the bible there is a scripture that said it is not because the mother or father has sinned but so that I (God) will be glorified. He knew Jenn and Damian that we are equipped with a lot of strength and that we are more than able to take care of these beautiful children. It is not more than we could bare because they are still alive and we can give him the glorry and see how he also work through those surgeons. When I look back at my young cousins and older cousin and how most of their lives are already complicated, I now no that they really couldn't handle a heart patient like my little Tyler. Tyler stoood in the hospital with his first surgery for 6 weeks. He also had a nissen and g-tube placed for his problems with reflux. When he was 4 months old he had the Glenn shunt done and again he did very well. They had warned me when he made about 4-6 months it would be time for that surgery, well they were right because the day before I took him to the ER, his Sats was in the low 60's and he was sleeping for longer periods of time. That surgery took about 5 hours and he did very well. We had a 3 week wait this time amd a 3 week stay after surgery because there were so many other heart babies before us. Now Tyler is 16 months old and he weighs 21 pounds. There goal is to get him to his 30 pounds because he really need this last surgery. Eventhough Tyler has had this last surgery, his sats is still running 80's if sleeping, 60-70 fussing or awake. He gets very tired when walking short distances. They can't explain why Tyler is still having low Sats. The Doctor said on yesterday, Friday, August 1, 2008 he will see about getting a heart cath done to see if there is some problem that he is not seeing on the echo. I know I have really said alot but what I am trying to say is that we have a long road ahead of us, but in the good times and bad we still have to give God the glory and know that he will bring our beautiful kids out of this. I don't think he brought them this far to leave them now. Although Tyler have gone through all off this and is still going through stuff he learned to wall at 13 months, he smiles, he says different words, he is so smart and he is equal or even past some of the other kids milestone at his age. God is really good to us and God love us and our children. He knew that we could take care of them. When you say to your self, why me, God is saying why not you. These children have to be born to somewone, God know who can handle it and who can't. But I just want you two to keep up the faith and believe that God and our family will get us through these hard times. I just also want to add, I don't know if you know about this but when he was younger, I had an occupational and physical therapist coming in the home. They helped a great deal. Tyler was doing so good, they said that he didn't qualify for their services anymore. I now have a homehealth nurse who is great that comes in my home. She listens to his heart, take his sats, and weighs him and document it so that I can bring it to my Dr. visits. There has been times when shee thought Tyler was too blue and she would put a call in to them. The nurse and our Dr.s office works hand in hand that is another blessing. Well I hope that you have been blessed from this long message.
by: Tina Torregano (contact) - 02 Aug '08 - 09:07
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