Our 25 week Miracle
I’ll tell you the last chapter first because I want this to be a story of hope. Josh is a happy little 6 year old boy. He is in main stream school with good friends and loves his out of school activities. His challenges now are minimal compared to those early days. He has Nystagmus and Oromotor Dyspraxia. He is still catching up developmentally, but he’s a joy to be with and is truly loving his life.
Josh’s story
At 17 weeks my appendix burst and we were very worried for his survival, but Josh hung in there and came at 25 weeks and 5 days due to toxins in the placenta. Unfortunately, there was no Intensive Care Baby Unit near our home so I was moved to a hospital 2 hours away 5 days before he arrived.
Josh’s birth was not a happy experience. When he arrived, Josh was only given a 5% chance of survival. He was so ill and had to fight so hard to stay with us. We watched so many other children suffer even greater challenges than Josh and many of those children didn’t survive. It was a really awful time. We’ve moved on from those times emotionally but it actually took me a long time to heal from that and there’s no need to revisit those emotions here. I want to share the medical side of things to give support to parents going through similar situations so I’ll tell you that Josh was intubated for four days, on CPAP for 3 months and on oxygen for 1 year. Josh still bears the scars of those early days with marks on his hands and elbows from IVs and his main line tube. He was also tube fed for 9 months and has suffered reflux on and off for his whole life. There is a whole list of medications that went along with him during this time as well. We had a very strict medication regime for Josh’s first year. Josh stayed in intensive care for two months + and then by the end of the third month he was ready to move to our local hospital. After a month in our local hospital Special Care Baby Unit we finally arrived home on Andy’s birthday just before Josh’s first Christmas. He was still on oxygen, tube fed and a long list of medications, but such a beautiful baby and such a survivor.
Josh was 8 months before his nystagmus became apparent. Two doctors tried to tell us Josh was legally blind and could only see shadows. Instinctively my husband and I knew this wasn’t true, but with two opinions we had to consider it was possible. Luckily, Josh proved them wrong and has moderate to good vision with nystagmus. This site provides excellent references for people working with children with nystagmus. I use the site to help adults at Josh’s school understand the issues around his vision.
While Josh was little we had lots of specialists to support us. An excellent physical therapist, a really supportive pediatrician that we still see regularly, nurses to check on Josh’s oxygen levels and other regular checkups at home, a lovely vision specialist who now follows Josh’s progress at school, speech therapists and a FANTASTIC feeding specialist (I can’t say that loud enough online – please hear me shouting her praises). She has been so patient and helpful over the years and kept Josh and my husband and I as motivated as possible to keep moving forward with his eating challenges. Josh is now eating apples and we feel we are coming to the last hurdle with his eating. We may be at that last hurdle for a long time as we have at every stage of feeding, but he has come so far!
Back to school 2008
We did keep him back a year in school, which was a challenge – there was a lot of red tape and not a lot of support for that decision from the school and the local education authority, but with lots of phone calls and letters to the right people we did it. He also has a statement of special needs to fund full-time support at school. Now he’s in the right school year for him and he is really enjoying school. We can’t say enough positive things about Josh’s wonderful school support team. And by that I mean the fantastic “Mrs. D” and fabulous “P” as well as all the teaching staff and school administrative team who have helped Josh along the way. We know he is getting as much help as possible because of their constant support and efforts.
We’re so proud of how far you’ve come Josh.
Sandi is an American living in England with her British husband and two boys. She writes about their rural life in England and about her passions for design and usability and a little about their ongoing story of life with a 25 week survivor.
