The app Instagram has become a huge support system for me. Who would have thought an app where you upload pictures would be a social site? I follow many kids with CP along with a few adults that have CP. I can actually call them "friends". I have emailed with some, become Facebook friends and sent medical supplies to another. Our CP circle grows all the time. It's so nice seeing others who are going through the same challenges. I don't feel so alone.
I "met" Tessa's Mom on Instagram. I saw a picture of Tessa trying to walk on her own at therapy. She reminded me very much of my Ailyn. Blonde hair and all. Tessa is 4 years old. I have had many phone conversations with her Mom. She has been a great source of information for me. I hope one day we can get our miracle babies together! Here is Tessa's amazing story!
Tessa was born on August 3, 2008 at 25 weeks weighing 1 pound 15 ounces and 13 ½ inches long. We had three wonderful weeks of amazing progress. Though Tessa was so small and under developed she continued to fight and amaze everyone. Thedoctors kept telling us that we needed to remember that just as we have good days, we can also have bad ones.
About 3 ½ weeks after Tessa was born she got a staph infection that was septic and she took a turn for the worse. She began to retain fluids and in a matter of days she had doubled her weight. Tessa was placed on a high frequency ventilator and more medications than I can remember. To keep her comfortable she was sedated and paralyzed. When her body stopped producing urine we were told that things were at their worst. I began to sleep in the waiting room because I couldn't bare the thought of getting a phone call and having to make a 20 minute drive if her tiny body had finally taken all it could.
During the 9 day “vigil” we were told twice that she probably would not make it through the night. Matter of fact, one day I was paged from the waiting room to come in immediately. When I entered the room it seemed like every doctor and nurse was at her incubator. I walked over and placed her tiny hand in mine and began to silently pray. I told her that I loved her more than she could ever know but if she could no longer fight and the pain was too much to bare, she was free to go and that I would see her again one day. That was the hardest thing I have ever done. Since the day she was born I had been praying that one day she be healed and we could take her home. While I still wanted that and would have given anything for it, at that moment I felt I was being selfish…I did not want her to be in pain and suffer anymore.
It wasn’t long after that, that Tessa began to recover. One by one the medications hanging began to be discontinued and the oxygen support was decreased. She started to pee again and lose the fluids her body had retained. Eventually she was taken off the sedation and paralyzation medications and placed back on the normal ventilator. Once again she had amazed the doctors and nurses. Before long she had graduated to a crib, was placed on a nasal cannula and was moved out of POD 1 into POD 4 and then upstairs. We began to bottle feed her and in no time the word DISCHARGE was mentioned frequently.
It wasn’t long after that, that Tessa began to recover. One by one the medications hanging began to be discontinued and the oxygen support was decreased. She started to pee again and lose the fluids her body had retained. Eventually she was taken off the sedation and paralyzation medications and placed back on the normal ventilator. Once again she had amazed the doctors and nurses. Before long she had graduated to a crib, was placed on a nasal cannula and was moved out of POD 1 into POD 4 and then upstairs. We began to bottle feed her and in no time the word DISCHARGE was mentioned frequently.
Another parent in the hospital once told me to never give up. She said that these babies are fighters they do not know what giving up means; they have never been taught it.
MIRACLES HAPPEN....WE HAVE PROOF!Today Tessa is 4 years old. She is in the same type of preschool as Ailyn. She has come along way! I have watched many videos of Tessa. Her love of life shows. She is such a happy girl. Tessa struggles with speech but is always progressing. Since I have "known" her she has learned to walk on her own! She still uses a walker but is doing AMAZING. Ailyn and I cheer her on daily!
Can I ask for your support and a donation to March Of Dimes? The $5.00 you spend at Starbucks today can go towards saving the life of itty bitty babies like Ailyn and Tessa. The link to donate is on the side bar. Thank you!!!
Stay tuned for other miracle baby stories!!!!
