My Angel Aryn's story

I am going to tell you his story I am sorry if it is hard to follow. I am not the best at putting his story to words but I will try so here it goes.... Well my pregnancy with Aryn went great never a worry outside of the normal pregnancy worries. We were so excited for our little addition to the family.



When Aryn was brought into this world via C-Sec, I was a little worried because his cry was very faint and he was very blue more blue than my other two boys were when they were born, they told me he had a heart murmur but not to worry because a lot of babies are born with murmurs.





So I tried not to worry and we went into the recovery room where he had his first bath and we feed him and got our first mommy and baby pictures and daddy and baby pictures. After all of that we were sent back to our room with Aryn and the rest of the family got to meet Aryn for the first time.



Everyone had there chance to hold him for a little bit, Aryn was grunting more than normal so we asked for a nurse to come in and check him for us and when she did she said he was breathing to fast and that he was taking over 80 breaths a min. So she scooped him up and took him to the special care nursery for observations. He spent the night in the special care nursery with daddy coming and checking on him and feeding him every so often, because I couldn't. But once I could which was about 5:45 am the next morning I went up there to see him he was on Oxygen and was hooked up to the heart monitor the nurse said that they were having problems feeding him and that his oxygen levels dropped in the night but the were coming back up and they may even take him off the oxygen. I remember seeing the doctor shacking her head no and saying " we better leave it and just watch him a little longer to just be safe" which kinda scared me but i held him for about an hour then had to go back for a vital check myself. then the doctor came in a asked if they could do a arterial IV in his umbilical cord so they could check his blood oxygen levels (this was about 9:45 am) and of course I Agreed and allowed it. Later on that day his daddy Marion was in visiting him and was trying to feed him but he wasn't feeding very well so the nurse wanted to listen to his heart and when she listened to his heart and lungs she said she was concerned because his o2 levels were really low and wanted to call a specialist. And when the specialist came he ordered X-rays but the X-ray ruled out his lungs they looked fine. When the doctor came in and told us that he was being intabated and being airevacted to St Joes in Phoenix. I was hysterical when I found out that he had to go alone and that I had to wait to be discharged before I could go and than I had to drive 50 miles to st Joe's and then had to hobble around the hospital which is a huge hospital so I am frantically looking for the NICU for 45 Min's so it was three hours from the time he was airevacted to the time I was finally with him again and this is how I saw him:





This is when they told me that he was diagnosed with Hypoplastic Left Heart Syndrome also known as "HLHS". HLHS is a severe defect in the anatomy of the heart. The left ventricle and aorta are underdeveloped. We had three choices and they were a series of three open heart surgery the first at birth to a week old and the second at three to six months old and the third anywhere from 2 to 4 years old and there was a heart transplant where the would replace his heart with a heart of a donor or comfort care where bring the baby home and let him pass in peace with out any surgeries. Here is a pic of a normal heart on the left and a hypoplastic left heart syndrome on the right side:




Well I choose the three surgeries because there was no guarantee he would make it until he got a new heart and I wanted to at least try and give him a chance at life.

We went 6 days with out being able to hold him or hear his little cry. All we could do is sing and talk to him, hold his hand, and kiss his little forehead. I remember walking down the hall and passing by the pediatric ER and hearing a baby crying and I started crying, I felt like dropping to my knees all I wanted to do is hold my baby and hear him cry. He was on a breathing machine because the medications used to keep the PDA (which is a duct that allow the right side of the heart to get blood to the body) open the babies have to me on a breathing machine.



The night before his first open heart surgery at a week old they took him off the breathing machine and we finally got to hold him and give him a bath. He gave us a scare though he had a hard time waking up and remembering to breath be cause the medication they have to give them during intubation is very strong and has lasting effects, so they had to give him a dose of epinephrine to wake him up.







The surgery lasted for 12 heart wrenching hours of uncertainty, worrying and watching every nurse and doctor that passes by the waiting room, hoping that if they were there for you that they were there with good news. Once we finally had a nurse come in they were telling me that he wasn't doing so well and they were having problems with his rhythm the doctors were having a hard time getting him off the bypass machine and he may have to be put on ECMO which is similar to the bypass machine but thankfully he made it off the bypass. Once we were finally able to see him, he looked cold lifeless lying there in his bed with his chest open and tube coming from it draining blood he had chest tubes and an IV in his neck a tube in his nose draining brown stuff from his stomach. he had bags of blood being pumped into him 16 different pumps of medicine, a breathing machine and a breathing tube in his nose. Four nurses and/or doctors around him at any given moment so needless to say it was very scary see him like that. I am trying to be as descriptive as possible because I never took any pictures of him after the surgery, I was hoping I would have other chances to get pictures. It was a week later when they closed his chest they leave the sternum open to allow for swelling because they swell a lot. Day by day tubes and wires slowly started coming off. Then he was finally taken off the breathing machine again and I got to hold my baby after another 12 days. But only for a few days because one night his o2 levels were dropping into the 40's and 50's % when they wanted him at at least 70% ( a hypoplast baby usually run any where from 70 to 85% as a normal day) and he was having a hard time breathing and he had a lot of junk in his lungs they put him back on the breathing machine for another two weeks.



The reason he was on it for so long was because they couldn't figure out why he was dropping his stats so low, they even thought he may have pulmonary hypertension (when there is to much pressure in the pulmonary veins and arteries)but that was eventually over ruled.

Aryn had his up downs we went through him coding, his arrhythmia's but had some good days too his first day having a bath in a little basin was one of my favorite days with him kristi his nurse and I gave him the bath I can still smell his lavender body wash and lotion to this day.It was also the first day we were able to dress him in clothes Kristi had this cute little yellow nighty with a little cow on it. I was so happy I was able to dress him I went home that night and packed up a diaper bag full of his rompers and nighties. My Mom and Heather were there with me that day. They were so happy to be able to hold him. Oh and I can't forget Kristi also hand made him a blanket and gave it to him also that day. so needless to say this day was a good day.







From this point on were really good he still had his ups and downs there was talk of going home for a little while also but he liked it to much in the hospital because every time the doctors would say anything about coming home he would pull a little stunt where it would be out of the question but that's OK. We were able to walk around the unit with him. The first day we were able to walk with him around the unit his daddy was up there with him and I was at home with his brother but once I found out that they were letting him I called grandma and had her come sit with the boys so I could go up there and walk with him around the unit also I never wanted to miss out on anything. He would be looking around so curiously and innocently at all the new stuff around the unit outside his room. When we were walking around the unit Aryn and I would stop at this big window that over looks Phoenix and we would just look over the scenery for a good long time. I remember these little looks Aryn would only give me and they were the most endearing looks like he was think aw I love you mama. Before we were able to walk with him I would stand or sit at his bed for hours on end just holding him and rocking him. Aryn and I had a special bond, the nurses would tell me that when they would hold the phone up to his ear for me he would get this peaceful look about his face. Aryn had the most angel face little smile also. Here are some more pictures.









I loved that little boy with all I had I sometimes feel like it just wasn't enough to keep him here. His last week here with us was really touchy his second surgery keep being rescheduled finally it was scheduled for that Monday until he lost his broviac line (similar to an iv but goes in the chest and is a little more permanent) to a clot and he was no longer receiving his heart medications for is rhythm and it was rescheduled once again for that following morning which was a Sunday. So after three months of watching him grow in the hospital his surgery day finally arrived... but unfortunately shortly before he was to be wheeled out to the OR. He started having apnea spells and started turning grey in my arms as I am holding him so I call the nurse in she looks at him and immediately took him from me turned on all the lights, called in the docs and in a matter of 20 min it went from me holding my baby spending time with him before his surgery to complete CPR. They had to do CPR for an hour and half. If your wondering why so long they were trying to get lines in him to be put on ECMO but he also had a clotting disorder so every time they tried he would clot off also with his blood pressure being so low it also made it difficult to get the lines in ECMO. Once they finally got him hooked up to life support to give his heart a break, he was on for three days. On the second day the doctors sat me and my fiancee down to tell us that it didn't look so good. Aryn hasn't moved or woken up yet and his kidneys had shut down and he was having seizures. So the the next day they did an EEG (a recording of the brains activity) and it showed very little brain activity. They also did another ECHO (an ultrasound of the heart) and it showed that the heart had irreversible damage and it would not sustain life even if he were to have the second surgery. We had to make the hardest decision of our lives to allow him to be with god in peace and not be in anymore pain. So on April 29, 2008 my baby earned his wings. I love him so much and never stop thinking about him. He will live on forever in my heart and my thoughts.