Preemies

Intro: Jordyn Jacquetta born at 25 weeks 1 day

Hello all,

I am really just wanting to tell my story and maybe find some support.

4/6/11: I went in for my regular ultrasound. I was pregnant with identical twins. Jaycee Jakari (Baby A) and Jordyn Jacquetta (Baby B). At the appointment they found that Jaycee had a lot of fluid around her and her heart was very weak while Jordyn had very little fluid and her heart rate was slower. They diagnosed me with TTTS (Twin to twin transfusion syndrome).

4/7/11: I went to a specialist to have them look at the twins and had hopes of recieving laser surgery to correct the blood vessals. However, as they were doing another ultrasound Jaycee no longer had a heartbeat.I lay on the table crying uncontrllably as mm husband attempts to console me. I was told by the doctor that the excess fluid would cause pressure and that if it gets to uncomfortable they could try to take some of it out.

4/8/11: I begin to have small contractions. I go into the hospital and they decide to stop the contractions. I was also given steroid shots to help develop Jordyn's lungs.

4/9/11: I go back to the hospital so that they can give me the second dosage of steroids.

4/12/11: I go back to the specialist to have an ultrasound done. They tell me that Jordyn's heartrate is a lot better. They also tell me her fluids have now increased. The doctor tells me he is supposed to do a full body exam but sees it as unnecessary since I will continue seeing my regular doctor.

4/13/11: I feel the pressure they were referring to.

4/14/11: The pressure is coming and going. Getting stronger and stronger. I have an appointment with my doctor, so I decide to wait and ask him if it is what I should be feeling. I get to the doctor and have to give them a urine sample. As I go to sit on the table I try to lay back. As I try to do this I feel my water break. The doctor comes in and tell me that we must get to the hospital. I get there at 11:05AM. They hook me up to an IV and I get back to the operating room. At 11:41 Jaycee was pulled from the womb. At 11:43 Jordyn was pulled from the womb. She tried to cry and breathe on her own, but was soon taken by the neonatal nurses and doctors.

Jordyn is doing really well and I believe it is because her sister is watching over her. But going into the NICU I am always expecting to see two babies instead of one which is very hard for me. The NICU is great where she is at and when I can't be there I always call. But I feel like they don't tell me everything. Such as today I found out that they think she may have an infection. They are treating her for it, and she isn't acting sick, but I wish they would have toold me. When does it get easier?

Re: Intro: Jordyn Jacquetta born at 25 weeks 1 day

  • Wow, that's a lot to go through. I'm so very sorry for your losses.

    I would like to congratulate you on the birth of your little fighter as well.

    When does it get better?.....it's different for everyone. What I can tell you is that as you continue to get through the individual minutes, hours and then days, you'll start to be able to look back, a day, a week, a month, and see improvement.

    Big, big hugs, and prayers for your family.

  • ayramayram member

    Welcome, congratulations.  Beautiful names for  your precious girls.  I'm so sorry you need to be here, and am sorry for your loss.  All the best in the coming weeks - it will be a roller coaster, and I wish you and  your husband strength.  I've been in the NICU for 3 of my boys (the first at 33 weeks, the second at 31 weeks and the third at 27 weeks).  They were some of the hardest times of my life. I hope it goes smoothly for you.

    A few tips:  Pump as much as you can, as soon as you can.  Learn as much as you can about your little one and her issues: you are the one constant in her care - doctors and nurses come and go.  Take lots of pictures.  Read/sing to her.  

    If you have any questions, these ladies are a great resource!

    All the best! 

    Mom to 4 boys under age 6 Evan, Darren, Liam & Isaac
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  • Welcome to the board.  You can get a lot of support here, there are ladies who have been through it all and understand a lot of what you are going through.

    Congratulations on your daughter, and I'm so sorry about the loss of her sister. The NICU is one of the most difficult times I've been through, but it is amazing to see the fight in all the preemies. I'm glad to hear that Jordyn is doing well and hope her stay is as smooth as possible.

    Ask lots of questions, the nurses are invaluable for information, advice, and to help you advocate. Befriend as many as you can. Two great questions to ask when you call or talk to the nurses and doctors is "What has changed since the last shift?" and "Any new orders written?"  I remember, especially the first several weeks of my son's life when he was pretty critical, that there is so much going on at once it often got overwhelming to keep everything straight, and sometimes the nurses and doctors don't remember to tell you everything.  Keep notes if it is helpful, and like I said keep asking questions if you don't understand.

    As for when it gets easier - well, I just took it day by day.  Some days were easy, some were the most difficult of my life. The hard part is you never know which it is going to be when you get there. Try and rest up as much as you can - you've been through a lot these past few weeks.  ((HUGS)) and good wishes to you.

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  • I'm so sorry for your loss~ being a NICU mom is a difficult journey as I've found out these last six weeks.  But I've made it easier for myself by writing a journal for my little girl every day.  I sing to her and talk to her.  Read her stories and sometimes I just stare at her.  It took me a while to look past all the tubes and wires and just see my precious little girl.  Celebrate her, tell her about her sister and cherish everyday you are with her.  One of my LO's RT's told me last night when he saw me crying (I do that a lot too - let yourself) that I should consider myself lucky that I didnt have to wait until July to see her pretty face. 
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  • Welcome, mama!  Your beautiful little one's will always be with you, in body and/or spirit, from here on out.  Know that we are here for you.  We know some things, but our hearts feel for you the most.  Please keep us updated. 
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  • Congratulations on your little fighter!  I am so sorry about the loss of her sister. 

    The NICU is a long road, but I found that it got a little easier after the first 8 weeks were over and my peanut wasn't so critical anymore.  It got hard again at times, like when he needed laser surgery for ROP, but overall things got 'easier' as time went on.

     I like njdcgirl's suggestions of asking questions about what has happened that shift or about any new orders being written.  We let our NICU staff know that we wanted to be kept up to date on everything and once they knew that, they more than obliged.  The staff there became like family and they loved our little guy like their own. 

    I'll be thinking of Jordyn and will be looking for your updates!

    TTC with unexplained IF since 8/2007 6 losses, one beautiful perfect boy in our arms Lilypie Premature Baby tickers
  • Congrats on your little miracle. I also lost a twin, without reason, and I can assure you that there is an angel on Jordyn's side for the rest of her life. 

    Wishing you an uneventful NICU stay. 

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  • Thoughts and prayers!!!

     

  • Im so sorry to about your loss.  I also loss one of my identical twin girls to TTTS in Feb.  Im part of a wonderful support group on FB  for TTTS grief group.  Let me know if you want to join.
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