NICU Grad 2018 Josephs’ Story

Prior to this pregnancy I had 2 full terms baby. But I’d always had my doubt I knew something wasn’t right from the start. Please note that i had occasional bleedig heavy and light every other week. Each time i call my ob and get checked i was told everything was fine. But despite what the doc said i did my own reseach and i couldn’t be more happier plus thankful that i had. On Oct 20 2017 everything happened so fast, thinking i would just get sent home like usually I told my husband to go to work. Soon i realize the pain was getting intense its not normal so I was drop off to the closest ER by a friend on her way to work that morning and believe or not in less than an hour my son arrived. Joey was 25week gestational 13 inches and 1lbs13oz. His due date was Jan 31 2018. Imagine going through this alone with no one close to you around but I am truly blessed and greatful to have been surrounded by professional strangers respectively, and I thought this was hard enough. Little did I know that it was just the beginning. When my husband arrive we waited for another 2hr to go see Joey for the first time. I visited him throughout the night. And I couldnt help but blame myself, what did i do wrong? Why did it happen? Then going home the next day without my baby was the hardest, I couldnt sleep. The first 42 hours he seem to be fine but I was inform from the beginning it will change, and soon enough he was on ivs, pick lines, oxygen support,  and everything else. He then became VERY sick, at 10 days old he was on 100% oxygen support and was transfer to childrens. I rush to childrens, and in such a short notice i had no time to discuss these matter to anyone I did eveything that was possible to save my babys’ life and so they took him straight for surgery. He got an ostomy surgery done it was the best decision i ever made. The breathing tube down his throat, the tape and the ivs all the pains he bare and cry without his voice being heard. The blacked fingers he had from the previous hospital and i was told he may lose them. As if that wasnt enough, and then we were called to meet with autoimmune disease speacialist. We were told that he did not pass his newborn screening, he was low on t-cells, he is going to be sensitive to bacterias and can get easily plus really really sick throughout his life time. They continue to monitor his t-cell biweekly and was sure that if the 3rd test came back positive that was it. When the 3rd test result positive again my heart sinked. But on the positive side he was on feedings and doing well recovering, so i know that this autoimmue disease thing was nothing to be bothered by, i can tolerate that, as long as i have my baby thats all that matters. The 4th and last test was tested closed to his due date and the drs and nps inform me it was more likely to come back positive, but through hopes and prayers it was negative! We were so relieve, everything was going the right direction finally or so we thought, the last thing was to reconnect his bowel intestine or reverse ileostomy. 2 days after his reverse ileostomy we got a phone call from the eye surgent, baby have ROP stage 2&3 and if we dnt act fast he will lose his eyesight and become blind. I was mad, the fact that they have been monitoring his eye sight but no one said anything i mean it would be nice so i didnt hve to take it by surprised. Each time i told myself its okay, its a good thing that they found the problem and help him as soon as possible, i wont cry i must be strong for my baby but still each time i cry. The following week he had eye surgery and was back on antibiotics and everthing that goes. Our little guy was healing fast and finally we talked about going home! On feb 28 2018 he was discharge. He did however came home with oxygen tank but shortly after a month he was off. His eye sight is good and he is doing well. Thinking back i did not know how i did it, i visited him everyday took everychance i could. To those Sleepless nights and Experiencing the near lost of ur own child. But Through the love, support and prayers from families, friends, strangers, hospital staffs and all nicu suppots we made it!  No one should have to go through this but it happens and we have no control over it. And to all mothers who is going through this right now please dont forget to take care of yourself, you are your babys’ strength. It is hard and until baby gets to come home it will only get harder.

With love, hope, strength and prayers

Former nicu grad

3 Replies

  • Thank you for sharing tour journey with us. So much love coming your way!

  • Welcome to Share, and thank you for sharing your story here. The NICU journey is the hardest, but you are absolutely right, the after NICU life is also harder. All the emotions start and you are caring for your preemie baby at home. I'm almost 5 years out now and I will tell you, those days will always be the HARDEST, but I know that it took me being the strongest I could possibly be to get through it. I know now that I did everything I could just as you have and always will for your baby and family. As you process through the last 6 months, keep us posted on how you are doing. We are all here for you as you get through the emotions of post NICU life.

    Congratulations on sweet Joey!!!
  • Hello and Welcome! Congratulations on your baby boy Joey! I'm sure you are so very proud of your NICU grad and happy to have him home where he belongs. Thanks so much for sharing your story with us. So many members can relate to what you're going through and the ups and downs of the NICU and how sometimes it follows you home. I hope that you can keep us updated on Joey and how you're doing. I have found its convenient to start a blog for regular updates.
    Love and Hugs