Yesterday, Maddox starting having trouble keeping his oxygen levels up. I really did not think anything of it. The doctors said he may not make it to Sunday but they had said that before. I trusted that Maddox would make it to Sunday. I really didnt think things were going to move so quickly, even though I was warned.
So at about 7pm things got bad. His levels were at 60 % when they are normally at 100%. He was already on full support on the vent so there was nothing they could do. They said it was not his lungs it was his heart that was making him desat. His heart rate was still good at this point. So the nurse called Dr. Bobbi P and let him know what was happening since Dr. Bobbi knows him best and is very blunt. He asked to speak to me. He said, "I am thinking that Maddox will not make it to morning so we need to make some decisions very soon." He came to the hospital. We called the photography and decided we would extubate him when he got there. Things did not work that way. At about 9:40 when the photographer was about 20 minutes away, I had just sat down to clear my head, when Dr. Bobbi came in and said, "Take everything out, give him to mom." I had not even begun to process everything and then here I am being handed my purple faced son. I through off my shirt and put on my robe and held him tight to my skin. I had my eyes closed for a while then managed to open them and get used to seeing him that color. I talked to him the entire time telling him its okay to let go and that I will miss him but see him again and that it will all be okay. I couldnt stop talking to him. Words just kept spilling out. It will be okay sweet boy, its okay you are done here, no more of this, you are done and I love you so much. He took one loud gasping breath the entire 5 minutes. I only looked at the monitor once and the heart rate said 54. That was all I saw. His is normally 140. After just a few minutes Dr. Bobbi came and listened to him, and pronounced him dead in my arms, at 9:50pm. On his birthday, just 4 months old exactly. After he passed I just held him the same. Tight and close. The photographer showed up shortly and took tons of pictures. I read him his stories. I snuggled him and kissed him sooo much. His lips turned very purple. I did not want to let him go but I gave him to Ron. Ron could not stop crying. Hes such a good dad. I am so proud of him. Ron held him close and spent some good time with him. We snuggled him for hours that felt like minutes. We bathed him, did TONS of hand molds and hand prints and foot prints and took tons of pictures and videos and just made tons of memories of our sweet angel. Then after the molds, we bathed him again, dressed him in his sweet white sleeper, snuggled him tight and surrounded him by all his stuffed animals. I read him more stories. I could not stop kissing him. With the help of our amazing family, we gathered every little thing from his room. We snipped a piece of his soft, thin hair, and cut and saved his tiny finger nails. His foot prints looked like two different feet because his right foot had an IV that had lost the vein so it was very swollen. They were still cute though. He stayed warm for a while until we had to unwrap him and leave him open to do the molds. He got cold. It did not bother me as much as I thought it would. It actually went very smoothly. I am not even freaking out right now. I probably will soon but I am okay right now. After a while, his stomach started to get really hard. So we layed him down, tucked him in. We took more pictures. Everyone had came in and seen him while he was in my arms and after we tucked him in. We got all of our stuff bagged and put into wagons. Everyone left one by one. Then it was just me and Ron with our sweet baby boy. He did not look dead. He looked like he was sleeping. It hurt to watch his chest and see stillness. His mouth was wide open the entire time. He never had his mouth closed, my silly little guy. The tip of his tongue started to turn purple and his lips turned white. He still did not look scary. He still looked sleeping. After being left alone, we undressed him and swaddled him tight. They told us that his outfit and teddy would probably get lost because they had to take him down to the morg and go to a few different places since they wanted to do an autopsy. His genetic testing shows that he did not have the common mutated gene for Alagilles so they are doing more tests and want to see exactly what was going on in his body. I dont like to think about them doing an autopsy so I will not speak of it anymore. Anyway, he was just laying in his crib, snuggled up and I just layed my head next to him. We could not stop kissing him. He was so cold, yet sweet. He smelled different, but it was sweet. We just snuggled him and kissed him and prayed with him. We finally got the courage to leave the hospital. We are still only across the street at the RMD home but it was still so hard to leave. We walked out and just looked at the sky. We know are little boy is up there and is relieved of his pain. WE are relieved. He is at peace now. PEACE. peace. He truly is. Someone told me that years on earth are just seconds in Heaven, which makes me feel better because I did not want him to miss me. So by the time I die, it will only be a few seconds for him and he will hardly know I was gone. Right now, I bet he is sleeping on a cloud, snuggled next to Nickolas. Tomorrow morning, Nickolas will show him all the cool places to play in Heaven, they will be read to by Jesus with all the other little children. They will have a great time and we will all be together again. I am still in an uptight, shock. I am shaking. I am nauseous. I am starving. I am aching. I am drained and exhausted. I am sore and broken. I am relieved and peaceful. I am without my child right now, and it is killing me that I will never see him open his eyes and look at me again. A few minutes before he passed, he was in his bed, being bagged in attempt to get his oxygen back up and he was just staring at me. I miss him so much. Something is blocking the bad feelings out for right now though. I dont mind it too bad. But right now, I am just trying to take everything in. But I am going to go now. I will blog more later. Just had to get this out real quick. Thank you guys and I love you all. Maddox is at peace at last. We are broken yet relieved. His fight is over and he fought damn hard. He truly is my little soldier.
9/14/10 - 1/14/11
Born at 2:24pm Died at 9:50pm
He is everything to us. We will go on though. We will never ever forget him. Thats impossible. But hopefully our pain will ease with time. Knowing he is comfortable and that God and Heaven needs a little bit of everybody up there. Like Marcy says. What would Heaven be without some cute little babys? It can be just a bunch of crotchy old people LOL Marcys words. Love looking at it that way. Its over for us. He lives in our hearts now. Thanks to all again.
13 For you formed my inward parts; you knitted me together in my mother's womb. 14 I praise you, for I am fearfully and wonderfully made. Wonderful are your works; my soul knows it very well. 15 My frame was not hidden from you, when I was being made in secret, intricately woven in the depths of the earth. 16 Your eyes saw my unformed substance; in your book were written, every one of them, the days that were formed for me, when as yet there was none of them.
ReplyDeletePsalm 139:13-16
We lost our son last year to ags and our hearts go out to you. its hard but comforting to know that our little ones don't suffer anymore.
Maddox was born an angel and is now playing amongst the other ones. I will never forget your sweet, precious little guy. He is forever in our hearts.
ReplyDeleteI am so so sorry for your loss, Brooke. :( It might be small comfort, but my niece passed away at 21 days old. Perhaps they will find each other in Heaven.
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