railey marie brooks you will be missed and loved. you watch over your brother ryland and help him through this. you are an angel and you will never be forgotten. tell your brother trace that he to is loved and missed and remains in our thoughts. love always aunt bea
you are both going through something that no parent should have to go through once let alone twice. i want you to know that i am here for you whatever you need, i cant imagine how you feel. my heart goes out to you and both of those babies. i hope that you can stay strong and hopeful for your son. railey marie is very loved and will not go unthought of at anytime. i wish i had the right words of encouragement or even something to say that would take away even alittle of your pain but i dont, just know that i love you and i pray for and that you are all always on my mind.
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
just wanted to say that we are all praying for that beautiful little girl. god will protect her and watch over her in this very trying time. so glad to hear that ryland is doing ok. railey will be our little miracle baby. stay strong and be brave and we will keep praying for you. we love you all.
My heart just sank and all I could do is say NO NO out loud! My daughter had NEC and it was discovered at 19 days old. I pray Railey does not have NEC! However I want to stress my daughter is fine now because the Nurses and Dr''s caught it early. She did have 2 surgeries to repair the NEC.
Glad to hear the babies are doing so well, and even though Railey has decided to act up, I''m sure she''ll be just fine since you guys caught it early and she has all of these prayers directed at her. :) Crystal and Bruce, you two are already such wonderful parents. My heart is touched each time I read an update from ya''ll.
Anytime you need anything, don''t hesitate to call on me. I may not know all the answers (or any of the answers for that matter!), but I have an ear to lend if you need it.
Take care of yourselves and one another. God will handle the rest.
Hey Bruce & Crystal, Glad to hear that they are doing so well and I am glad to hear that Aunt Lila got to make it over there and see them. Just remember that it is always one day at a time even after you get them home. I had more scarey moments at home than at the hospital. They are Beautiful and Handsome. You guys are in our prayers.
So happy to see that both Ryland and Railey are doing so well. It all sounds so familiar, even the nurse incident. Mommy and daddy are very important to their healing and getting better. Lots of prayers coming your way from Las Vegas. May God Bless ALL of you! Janet
Hi Bruce and Crystal, We are glad to hear that Ryland and Railey are continuing to do well, and sorry to hear about your bad experience on Wednesday night with that nurse. Glad you got it resolved and that you will no longer have to deal with her, sounds like a pain! I''m glad to hear all the firsts that are happening as they happen and it''s great to read up on everything with the daily updates. I can''t wait until you get some more videos up on the site when you get a chance. Glad you are enjoying every moment you have with them and all your new experiences that happen each day as new parents. I check this journal a couple times a day and can''t wait for new updates. So start updating every hour on the hour. Ha ha ha, just kidding! LOL. Keep the updates coming! Chasity and Chris
Bruce and Crystal,
Congratulations on your new additions. They are so beautiful. I am really enjoying the pictures and updates. Bruce I told you when we talked by email that they are truely going to be miracle babies and I am more convinced that they are going to be just fine. They are already sending out so much love to everyone, especially their Mom and Dad, Enjoy every moment with them. Crystal, try to get as much rest as possible and YOU GO GIRL !!! great job.
I am sorry to hear you had difficulties with the nurse. Sometimes they forget about the parents feelings. However they are also trying to best for the baby. I suggest talking to the head nurse and sharing your feelings. We also had a simliar issue and suggested a nurse not care for our twins.
Better days are to come with the A''s and B''s! Are they giving Railey and Ryland caffine?
Thanks for sharing the new pictures! They look great.
I will have the twins added to our prayer list at church!
Keep pumping as I know it is hard to keep up with the two of them. I too had the same challenge. However the nurses would save Skylin some and Dylan had to use formula (1-2cc''s) from time to time. I pumped for the entire time Skylin was in the hospital (140 days). As I knew it was the best thing from Mommy.
The NICU road is hilly. There are going to be a lot of ups and downs. Somehow you will find the strength to get you through the next 3 months. Keep your eye in the day you can get up in the middle of the night and just watch them sleeping in their own crib.
PRAYING FOR ALL OF YOU EVERYDAY. HOPE YOUR BEAUTIFUL TWINS BRING YOU BOTH ALL THE JOY IN THE WORLD, NOTHING COMES CLOSE TO THE LOVE A CHILD CAN BRING. CANT WAIT TO HOLD YOU AND TELL YOU AND TELL YOU HOW MUCH YOU BOTH ARE LOVED. CONGATULATIONS CRYSAL AND BRUCE, WE LOVE YOU AND WE WILL KEEP YOU IN OUR THOUGHTS AND PRAYERS. LOVE FROM ALL OF US
Just wanted to let you both know how hard we are all praying for your new family. I check in daily just to hear about your new little bundles and to make sure each day they get a little stronger. Before you know it these hard days will be a distant memory and your love bugs will be home with you both. xoxo
Dear Bruce and Crystal, You don''t know me, I am from the IC board, but I wanted to say, you are in my prayers. I had a 27 weeker, 22 years ago, and your photos, and stories, bring back so many memories. My Ashley is 22 now, and trust me, the time in the NICU will seem like a blink of an eye in no time. I am happy the little anges are doing so well. I am amazed they aren''t on the vent. You must have had the steroids! God bless your happy family with a short NICU stay, and two healthy, little peanuts to bring home very soon!
I am glad to hear that they are doing so well and I know that they will pull through what ever is thrown at them. The are Beaubouefs by the way. We are fighters and stubbornd. You guys are still in our prayers.
I pray for you every day. I am so inspired each time you post. I appreciate that you take the time to update all of us, even us strangers, as to the progress of your miracles. I feel so much emotion for people I''ve never even met, isn''t life so strange sometimes??
I''ll keep checking in on you guys and continue to share my prayers with all of you.
lots of love,
Cindy (South Florida)
Crystal and Bruce I am sad to hear the news about Your little girl Railey. Have Faith and be strong which I know you both are already. We hope and pray for the best for both the babies. Talk to you soon.
I am sorry to hear about Railey and the PDA. Our daughter also had PDA and was able to correct it with medication. We pray that also the case in your daughter. She too relyed on help to poopy... Your daughter already reminds us so much like ours.
Ryland is also very much like our son. He too was the "superhero" of the NICU. He just sailed along and was a "feed and grow" until he was strong enough to come home.
We continue to pray for your little ones as well as for you as NICU parents. We know the toll it takes on the body and mind. Like I said before just take it one day at a time!!!