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We found out May 2009 that we were going to have a child together. We were so excited! Well I had a very hilly pregnancy it had started in June. I had started to bleed it wasn’t just a little bit, it was a heavy flow. We had thought we were having a miscarriage. We found out it was a hemorrhage close to the placenta. My doctor had to put me on bed rest until I had stopped bleeding. I stopped toward the end of July and decided to go back to work.

My husband was very upset with me but I was being stubborn. I worked and did everything as normal until almost the end of August. Once again, I had started bleeding. This time my doctor took me off of work until my anatomy scan. I went back and found out that we were having a boy! We were naming him Ethan James.

We really wanted a girl but I was happy regardless. Well after they told us what we were having doc couldn’t seem to find Ethan’s stomach. We were so worried. He had sent us to see a specialist. We had gone to the specialist and thank God he had found it. What a breath of fresh air that was.

Well I was hard headed and ended up going back to work but only part-time. I had my next appointment in November and they told me some more news that I was gestational diabetic that I had to see a dietician. I was then upset because that meant no more sweets or whatever I had a craving for I couldn’t have unlike most normal pregnant women would. I followed instructions and had a meter to check my sugar at least four times a day I had to poke my finger. Well Jan. 12, 2010 came around for my next appointment. I went in and he did his usual check and we also had an ultrasound to see how Ethan was doing. Well more news, we were going to have him today because he had low amniotic fluid around him. So I had instructions to head to Hardin memorial to have Ethan. I was getting induced at 1:45pm and at 4:30pm I had the shot in my back and told the nurse to go ahead and call the doc to tell him by 6pm I will have him. She thought I was silly. I told her I knew it so she did. At 5:45 doc walked in and said that they were going to stick a monitor on Ethan’s head because his heart rate was dropping and my blood pressure was low. So when he went to check me to see how far dilated I was he said ‘wow’ it’s time for me to get ready to deliver soon so he left to put his scrubs on and he said he would be right back. In the meantime the nurse told me we were going to push one time to be ready for when the doc was here to deliver. I said OK. I pushed once and she yelled stop pushing I yelled back I am not his head is coming out she yelled get the doc baby is coming now. Doc flew in and was trying to put his gloves on and as soon as he got there I took a little push.

Ethan James was here at 5:57 pm; he weighed 5lbs 12.5 oz and 18 inches long! He had a little touch of jaundice and reflux. They put him on Simliac Sensitive RS.

We got out of the hospital on Jan. 14 and went home. On Jan. 20 he started twitching. My husband thought because he was little and cold so he convinced me to not worry and just wrap him up a little more. Well on Jan. 21 he was still doing it I was so scared. I had called the new mommy hotline and told the nurse what had been going on. She thought it was due to low calcium. She told me to take him to the ER or call my doc right away. So as a worried mommy I hurried and took him to the ER. The wait felt like forever. We got to see the doc and she thought the same as my husband because he was still tiny. Well I didn’t mention to her what the nurse had said until right before she was getting ready to discharge us. I asked her if she could check him blood for low calcium. She sat there for a few and was like ‘Oh my.’ Well the lab tech showed up and less than 15 minutes the ambulance was on its way to take us to Kosairs. I was crying and scared. We got there and they did all kinds of testing too many to name. While our stay there Ethan and I had picked up this horrible cough. I asked the nurses to check it out they said it was normal because of the dry air on the fourth floor. I was worried but they have worked there for years so I went with it.

On Jan. 27 we had gotten discharged with the diagnosis as hypocalcaemia with a possible Digeorge syndrome and Vitamin D deficiency. Ethan’s cough still seemed to be getting worse so on Feb. 4 we took him to see doc and doc said he may have an upper respitory infection to keep using saline drops, nasal suctioning, humidifer, raise the head of the bed also. We had done all of those things but didn’t seem to be working so again we took him back to docs on Feb. 20 which was on a Saturday.

Ethan’s O2 stats were at 82%. They then called for ambulance to be taken to Kosairs. I was very scared. I had felt like he had been sick since before we left Kosairs the first time like no one would listen to me. We ended up there for two days they gave him treatments and suctioning. I had asked them for a breathing machine to take home they said he would be fine by then they diagnosed him with RSV broncholitis. We went home and I still felt like they still didn’t help him, so after getting out of the hospital on Feb. 25 we took him back in and he had acute broncholitis. Still nothing had been given to us but the same treatment saline drops nose suctions and humidifier. I was at wits end and decided they knew what they were doing they have the degrees so I left it alone and we did everything we were supposed to do.

Well were scheduled for a well check so I decided to wait till then and on March 11 my husband told the doc he was getting worse he doesn’t look good and sure enough his O2 stats were in the lower 80s. We were rushed by ambulance again to Kosairs. Same thing: diagnosed with RSV broncholitis. He never got rid of it since January, so they did albuterol treatments suctioning and gave him oxygen. Once again, we asked them for something to take home they said he didn’t need it, he would get over it. So we were discharged on March 17. I had felt that he wasn’t getting better by this time I called the doc got him in and we then started to beg him to please do something.

On March 22 we went in and he gave us some steroids, albuterol, and a nebulizer. I was so happy to began treatments because we both felt this would help him out. It seemed too had helped him out. He still would cough alot but it was soothing him. Until April 4 I noticed he didn’t look like himself. We got ready and went to my mother in laws for Easter dinner and his sister got there she has taken nursing classes. I had asked his mother and her to take a look at him and they both noticed that he didn’t look right. His sister then looked at Ethan’s fingernails and they were purple. She said I don’t want to scare you but you all need to leave now and get to the ER; he can’t breathe. I drove fast we were scared. We both knew this was serious. We got there in less than 5 minutes.

They rushed us back and he was at a 60% on his O2 stats. They were all scared we could see it in their eyes they put oxygen on him called the ambulance and next thing you know we are on our way to Kosairs. It was really serious. We got there and you can tell he wasn’t doing well. All this time since January we had been fighting this ugly bug. No one seemed to care to hear what we had today each time. This month was the worse yet. Ethan went through so much. He went through being put on an oscillator, a ventilator, ecmo machine, dialysis machine, using synergist to try and fight the RSV, to using an experimental drug. His lungs were so sick on the x-ray they showed up white it was supposed to show black. All this time he suffered and hardly cried just laid there quietly since January. The possibility of knowing that he was a Digeorge baby if I would have known he was then this could have been prevented because if you are Digeorge one factor is having a poor immune system. If they would have slowed down and took the time to take care of him in prior admissions they could of caught this. But now we are without our son who was so brave and tried to fight for his life. Mommy and Daddy couldn’t stand seeing him start to suffer any longer on the ecmo machine and ventilator and dialysis machines we had to discontinue all the pain you were going through on May 6 I had walked in and seen he looked terrible not like himself.

I started crying and the doc came to me and asked me what I was thinking, I told her this has to stop now, he is suffering. So then she said she would like to talk to us so I called my husband. We met with her and a nurse in a private room and she told us the chances of Ethan pulling thru are slim. Why did they wait to tell us this? Was it because they wanted to use him as a guinea pig? We told them how we felt and what they could have done to prevent this that night we sat with a few different docs and my husband told them all. We called all our family and scheduled to say our last goodbyes to our sweet baby Ethan on May 7, 2010. Everyone came and spent time with him and said our goodbyes. After they did we asked everyone to leave the room while my husband and I spent our last hour with him before we let him go be with Jesus. We sang his favorite songs to him, prayed, kissed him, talked to him, and just loved on him. At 9:35pm Ethan died in our arms and went to be with Jesus. That was the hardest thing in my life that I ever had to do and He will always be in my heart forever. I pray that no one other parent will ever have to go through the events that we had to with our strong fighter and sweet baby Ethan James.

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