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Hi, my name is Taylor, 69674EE2-D67C-4B43-88C6-777821A786B88981D0AA-4F6A-4EB6-9C88-07454969E6B632C230A1-2F14-4515-83F6-BA8A598129289B9B7DFF-2E0B-4E41-B9F5-4D18F5FC6E77I am a new first time Mom to a handsome 2 month old named Carter. Carter was healthy and stayed on track with height/weight. I gave birth to Carter at 37 weeks because my blood pressure was too high. He was born 6 lbs 9 oz and 19.5 inches. The birth went smoothly and we went home the next day.. Carter had some jaundice.. We took him to the doctors two days after he was born for his check up and sent home with lights for the jaundice. This pediatrician didn’t do anything for him.. We had told her (two days old) that he was having diarrhea every diaper change and had a super bad diaper rash that is breaking skin and we have been applying A&D. We told her he also has been really fussy. She told us that the diaper rash will go away and he is fussy because of the rash and diarrhea is from getting used to the formula. (I didn’t breast feed) The rash was there when he got home from the hospital. So, a day after taking him to his first check up Carter had begun to not eat as much, the diarrhea got worse, the rash got worse, a rash had started on his chin and he started spitting up/vomiting.. So the next day we took him to the same hospital just a different pediatrician. He didn’t do anything for him either. He said the same thing “he is just getting used to the formula.”. We left there thinking “okay we are just being very precautious because he is our new baby.”. So that night Carter had 2 ounces of formula and in the middle of the night wouldn’t eat. The next morning he was very fussy, tired, wouldn’t eat but was rooting and acting starving, he couldn’t latch onto his binky or the nipple. He looked very pale, eyes sunken in and very skinny. I did some skin to skin contact with him once his dad got home we rushed him to the ER. He was very lethargic. We thought it was dehydration from having diarrhea every diaper change and then not eating that night. They gave him fluids through an iv and took his glucose. His temperature was super low and his glucose was low. They could get any blood from him and had poked my poor baby over about 20+ times. After being in the ER for about 4 hours he got rushed in the ambulance to a hospital called Primary Childrens for intensive care. We still had no idea what was going on with our poor baby boy. Once we arrived at the hospital they got him in his room and were looking at him and tried drawing blood since they could at the ER so add on about 15 more pokes. We had about 15 doctors in the room. He was in such bad shape he had to be transferred up to the PiCCU. They get more intensive care and they have a nurse that is only assigned to them so they are paying attention to them 24/7. We couldn’t stay with him because they didn’t have anywhere for us to sleep. It was terrible leaving our baby. We had only had him home for a week. Before we had to leave one of the doctors told us that Carter was Severe Sepsis and Septic shock, Hypovolemic shock and they would find out more. My heart was broken. My poor baby is in pain and I can’t do anything to stop it. As we were driving home the doctor called and said that they have to place a breathing tube because he is having a hard time breathing on his own. My heart about fell to the ground and shattered to a million pieces. Come to find out they had punctured his right lung in the process. So then he had acute respiratory failure. Carter was in the hospital for 3 weeks. The entire time he was there he got 180+ tests done, had the breathing tube after that was taken out he was placed on oxygen, he had a feeding tube, he had a PICC line, he had to get two spinal taps done. My poor baby had been through hell. The whole time he was there we told them to switch his formula and they wouldn’t. We asked them everyday what was going on and if they had found anything new about what went wrong with Carter. We got the same answer Every. Single. Time.. Carter is doing better today then would give us an update on what he has accomplished if anything and then tell us they are still waiting on test results to come back.. Finally about a week or so before he got to come home they switched his formula and he started to get better and better. Then sometime, I’m not sure when, they discovered he has FPIES so they put him on the formula ElCare.. Remind you, we asked everyday for an update and we got the same answers. Finally we get a call saying he is being discharged in two days and unfortunately we have to take him home on a feeding tube. Before we could take our baby home after 3 weeks! They took out his feeding tube that goes into his nose and down into his stomach and FORCED us to put the feeding tube in ourselves. We are not medically trained or certified. We could have damaged his lung again or put it in his lungs. Luckily his Dad put it in and it went into his stomach. When we had left nobody told us that he was diagnosed with FPIES. We asked before we left and nobody told us. We found out from his NEW pediatrician that he had FPIES. He went and looked through all his medical records and discovered that he was diagnosed with it. So when we went to his 2 month check up his doctor had told us. Thank god we have doctors who actually do their jobs correctly. If he had not looked at his records and found that. We would have been right back at the hospital once we brought solids into his diet. Carter is doing really good now and is gaining weight and I am thankful for all the doctors and nurses who took care of him and saved his life. Carter had all the symptom of FPIES but we honestly would have never known.



Thank you for reading! 😇



I have some pictures of Carter from the Hospital, getting home, and today! ❤️

Taylor J

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