At 23 weeks and 5 days, May 3rd, 2009, I gave birth to my daughters, Faith Ann & Joy Aurillia. Faith weighed 1.6 lbs and Joy weighed 1.7 lbs. My daughters endured painful experiences and went through horrifying surgeries to stay alive. At 27 and 28 days old, weighing just under 2 lbs each, my daughters were wheeled in for heart surgery to correct a heart murmur (PDA Ligation). They were uncertain if their tiny bodies would be able to endure such a horrifying surgery, but they did it!
For the remaining 5 months they had lung haemorrhages, brain haemorrhages, infections, once again the list goes on and on. But thankfully, to everyone’s surprise, my daughters both pulled through it all.
The Rollercoaster continues after the NICU....
After almost 6 months in the hospital, on October 16th, 2009, I brought my girls home!! My daughter, Joy just couldn’t handle not having the extra oxygen so she had to be brought home on an oxygen tank. However, one week before Christmas, the oxygen was discontinued and we were free of any and all cords, wires and tubes.
At this time, I could tell something really was not right with Joy. I mean, I knew developmentally they would be fairly behind, but Joy just wasn’t doing anything but eating and sleeping. She couldn’t even hold her head up yet and she was almost 6 months corrected. Her movements were very shaky and jittery, I knew something was up. I thought, well in mid-January, they will be seeing an Occupational Therapist once a week, so that will probably help her.
Therapy started and two months went by and I wasn’t seeing much of an improvement at all. March came around and we had an appointment with the Neonatologist and Physiotherapist that the girls were looked after while in the hospital. Well, I got quite a shock, “Joy has Cerebral Palsy”. They said from the looks of it she had Spastic Quadrapeglia CP, meaning the CP was affecting her entire body. I knew it was a possibility, but they were both so strong I thought they made it through everything there was to go through. I couldn’t believe it, I was speechless. Devastated!
I didn’t know much about CP at all. So I began researching it and realized there is a lot out there that can help her, this might be ok. After all, she is alive and healthy and as long as I have her here, I will take her any way I can get her!
Then, I got more shocking news! In June, my other daughter, Faith was diagnosed with CP as well! Faith's CP seems to only effect her lower body, in her legs. Once again, all I could think was, she is alive and healthy and as long as I have her here, I will take her any way I can get her.
Today, Faith & Joy are 33 months old (29 months corrected)!!
Faith's mobility is getting much better. She still struggles to sit up on her own and only does the commando crawl. She struggles to stand and walk, but she is very determined and tries her best! She is currently receiving Botox treatment in her legs to help with the tightness of her hamstrings and calf muscles. I have seen a big improvement, however, we have only received two treatments. Treatment #3 is coming up next month. It takes a few treatments to get the doses right, so I am hoping we start to see a big effect after this treatment. Faith is a very happy girl, always smiling and giggling. She babbles quite a bit, but only has 3 true words. Mama, Dada and Baba! She loves to color and build blocks, play catch with a ball, and sit on her toy pony (she doesn't quite have the leg strength to push herself around on it yet). Faith is an amazing eater! She is eating everything we do and has since around her 2nd birthday. Faith currently weighs about 22lbs. I am so proud of the achievements she has made. You really don't think of the small accomplishments with term babies, such as bringing their hand to their mouth, eventually sucking their thumb, holding their head up. Those small things that happen before the first BIG roll over or first crawl on hands and knees. I see my miracle baby doing so well in her development and I think, wow... at one point I was really unsure if we would ever see 1 month old or the outside of the NICU for that matter, with either one of my babies!
Joy, on the other hand, is my little fiesty mama! She has been through a lot in 2011. It is a new year and I hope will be a better one for her! This past year brought a lot of questions and concrens to us. We just haven't seen much development in her. She is a lot like a 1-2 month old baby. As I said, Joy has Spastic Quad CP, so her mobility is very limited. She still has very little head control, however, she has finally started getting some strength and is able to hold her head in midline for more than a minute! She in non-verbal and we are currently beginning to look at electronis as her mode of communication. Joy has had a lot of ups and downs with feeding. Since the NICU days, she has been on reflux medication. I remember being in the NICU and saying to myself, will she ever be able to drink a bottle without vomitting? She has on and off over the past 2 years however, her struggles have over come her. She has struggled to gain weight over the past year and in June had surgery to have a G-Tube inserted. She struggled to drink a bottle and slowly the bottle has been taken from her. After having 2 aspiration phneumonia's within 2 months, she was put on strict G-tube feeds only. The G-tube has slowly started helping with weight but we have a long road ahead of us where Joy's feeding is concerned. Joy is currently just under 16lbs. Exploring why she is burning so many calories and not gaining weight is being investigated and I hope we find out soon! It is defintely a hard issue to deal with, but as long as we are able to get her the nutrients she needs to stay healthy I am happy there is a way to get it into her.
Although our life can be a struggle from time to time, I definetly do not take anything for granted! I enjoy life day by day and step by step!
Always remember...
If you keep the Faith, in the end you will have Joy!!
