- Sun, Dec 10, 2006 /
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I am not sure if you both want me to respond here or if you would rather it be private in the future….
I will be totally honest with you both….I just had to clear my eyes of the tears before I could type this response to your PM Crystal.
I also do not want you think this is all about me… I just want to share my story as it does have a very happy ending like it will for you as well….
I delivered my twins at 28 week. My son, Dylan was born first weighing 2lbs 2 oz. And 14.25 inches. My daughter, Skylin, was born 1 minute later weighing 2lbs 3oz. And 14.75 inches.
Dylan was strong just like Ryland. After he was born he was on Cpap and then nasal cannula. Ev ery time we called or were at the hospital, the response was Dylan is Dylan…, which meant great!
Skylin on the other hand started out on a tough road. After she was born she was placed on a ventilator. She too had PDA that was medicated twice to finally fix the valve. At 19 days old she was very fussy and the nurse started to beg the Dr’s to run tests on her and they discovered she had early signs of NEC. They tried to medicate her for 14 days however she was only showing little progress and she required surgery. Surgery day Skylin was diagnosed with RSV. The surgery had to be postponed for 2 days. Finally surgery day…When they got in there it was a lot of damage as her bowel perforated and cavity was filled with infection. The next 20 days were true hell! Dylan came home 2 days after her first operation. And Skylin blew up like a balloon!!!! She went into surgery weighing 3 lbs and 3 days after surgery she was over 6lbs. Her infection was so bad that they had to put her on an osolator which has a constant flow of air being pushed in the lungs so the swelling would not crush her lungs. Skylin then had a colostomy bag for the next 8 weeks. Finally Skylin is well enough to have the surgery reversed. She goes in and comes out like a champ! We thought OMG she is going h=to have the same issues like the first time and have to go back on the high frequency ventilator. However she was back on Cpap in a day or so and then back on nasal cannula and breathing on her own again 3 days later. Her second surgery was on June 5 and she finally came home on June 22!!!
Skylin was also had a rafobia (tube in the belly to suck everything out) They do not want anything to go through the intestines to make anything worse. Yes, the x-rays were done every 6 hours with Skylin in the beginning and then they let up a little.
I tell you this story not to scare you but to give you hope. I was reminded so many times that I should be thankful that it was Skylin with all the complications rather than Dylan as he probably will not make it.
I know and I feel in my heart that Railey is just like my Skylin. From the moment I began to read they were born, I knew they would be just like my twins! I pray everyday that you have the strength like I did to get you through this. I look back and think how did I do it? Then I remember that I did it for my children. I know you have to be strong… I did too. It is okay to break down from time to time. Heck your NICU is saving you some pain by not letting you in while they are doing to procedures to them. My NICU (not that I am complaining) never had me leave. I even almost fainted one time when they had to put Skylin back on the vent….they did it while I was right there. I seen my little girl turn blue many of times… and that is why she has no blue clothes (LOL).
Crystal, you are NOT going to lose your little girl!!! She is a fighter like Skylin! Your children are in the best of hands! The NICU you are in sound excellent! And they are on top of things.
And on another positive note…today is Our NICU reunion party they have it once a year. A lot of the nurses have not seen my children since Skylin left the NICU. It will be a great day!
Please let me know if there is ANYTHING I can do your you! My email is GTCruzr@verizon.net