#imperferatedanus

[meggsbacon30-blog]

The best worst day

10-30-2017. The best worst day of my life. My baby boy was born and we were overfilled with joy! It was only a mater of minutes before the nurses began to wipe him off and take his vital signs. Everything was looking good until they went to check his temp. They were going to use his rectum to do this but when they went to, there was no anus. He was born with what is called imperferated anus (no butthole and 1/5000 babies who get it). Because of this he was immediately taken and had an IV put into his tiny little hand. At this point my husband and I were both in shock and had no idea what was going to happen to our baby. Because of this condition, he couldn’t eat. The doctors began to call around to different hospitals to find a nICU bed. They found one that was 2 hours away from the hospital he was born in. They immediately had a helicopter come take him. He was only 4 hours old when they came to take him. As the nurse walked out of the room he was screaming and I could do nothing about it. I was stuck in the bed. I was stuck in the hospital for the next day as I was awaiting to be discharged. As soon as I was discharged we went to the hospital our baby was at and spent the next week and a half down there. He was in the nICU, cold, alone, and without his mom and Dad. My heart ached because I couldn’t be with him. My heart ached because I couldn’t fix him and comfort him. When we got to the hospital we had to wait until he was out of surgery. He had to have a colostomy done and has a stoma now. Once he was out of surgery we were able to go into his room with him and be by his side. At this point he is one day old and feels alone because I can’t hold him. I can’t let him know I’m there. It was two more days before I could hold my boy. Once I held him and cuddled him, he looked at me and realize who I was. His eyes filled with tears as mine did. I was so overwhelmed with emotion. I was able to hold my baby. The next day was the first time he was able to eat. He was two and a half days old when he got his first meal! And boy oh boy was that the best thing that has happened to him! He LOVED this. He was so happy. Now our next step was to get him to eat 80ml. This only took about three-four days. By the end of this he was wanting more than 80ml and we couldn’t give him more because we had to wait for the doctor to give us the green light. Once they saw his stoma was working they began to show my husband and I how to put his colostomy bag on and how to care for it. And let me tell you, this was the most stressful this I’ve ever done. This bag is extremely sticky so it will stick to his skin. Not only did they put the bag on but also tape on the edges. And this bag has to be changed every 2-3 days. It was almost time to come home and we roomed in at the hospital with him. This means we stayed the night at the hospital with him and did all the care for him so the nurses knew we understood what we were doing. The next morning we were discharged and able to go home! Colostomy bag and all. We were told that he would have at least a couple more surgeries left to construct the anus and to reconnect his stoma. We were ok with this for the time being... once we got home we had some adjusting to do. This is not normal newborn care. We have to empty the bag every diaper change, be sure to let the gas out of the bag, and check it for leaks. Leaks are not your friend. In the hospital the bag would stay on for about two days. At home the bags would only last for about 24 hours. (This is ok but not preferred). I gave him a bath and put a clean bag on. The bags began to leak and not stick. It started to leak multiple times a day causing us to change it more than once a day. It was the soap I was using to bathe him! Switched from baby soap to dial (I hate this soap for his skin) and the bags are back to sticking for around 24 hours. We are still learning and working through this and it’s hard. But oh so worth it to help our baby boy 💙 he is now almost a month old and a very strong fighter.