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Michelle’s Story

 

This story was submitted by Michelle, one of our readers.

Sarai – Birth

We had no idea what journey we began on Jan 20, 2010.  Sarai Elizabeth Burns was born at 25 wks 2 days. She was 1lb 14 1/2oz and 12 1/2″ long. We spent 123 days in the NICU at BSA in Amarillo, Texas. The first picture is within two hours after she was born, the second picture is two days later when I touched her for the first time and the last one is her when celebrated her first birthday on Jan 20, 2011.

Sarai – First Touch

When she was two days old a chest tube was placed in her side because her lung ripped and air was leaking into her chest cavity. She had a PDA ligation at 10 days old and when she was 9 weeks old she had ROP laser surgery. She had 13 blood transfusions, multiple IVs all over her body and was on over 45 different medications. She was by all accounts not supposed to be alive. The day she was born the doctor gave her a less than 40% of survival. But with great faith comes great miracles. My little girl was a fighter and she not only survived, but thrived. Despite her low weight and size she responded well to all the therapies and surprised the nurses and doctors many times. She came home on May 22 with one monitor and a few medications. Within 2 months she was off all medications and the monitor was gone.

Today she weighs 14 1/2 pounds, is 26 inches tall and shows no signs of any metal or health problems. Her doctors and therapists still call her their miracle girl and tell her story often. People sometimes stop, smile and comment at what a beautiful little girl she is. When they ask how old she is they can’t believe she is so tiny. I tell them a small part of our story and the power of our God. Sometimes I forget about those months in the hospital, but then I change her clothes or diaper and I see the dozens of scars from her surgeries and IVs and they are God’s way of reminding me of His power and love even for the tiniest of his creatures.

Sarai – 1st Birthday (Jan 2010)

Afton Mower About Afton Mower

After Mower (UT) lost her firstborn son at 21 weeks.  Her daughter was born a year and a half later at 27 weeks.  The NICU was overwhelming and isolating and it was through those two experiences she was led to found this social hub for parents to find the support they needed. Afton also gave birth to another daughter, born two days overdue after four months of strict bedrest. She believes it is a tender experience to hold a special baby in your arms when his spirit returns to his heavenly home, a miracle to watch tiny babies survive the risks of prematurity and a blessing to hold a healthy full-term baby after months of difficulty and sacrifices.

Comments

  1. Samantha says:

    What a beautiful miracle! She is such a strong little girl 🙂

  2. hey realy is a strong little girl. im going through the same thing with my son he was born at 25 weeks and weighes 1 pound 8 ounces. he has been in the nicu for 2 months and 4 days.. and they are sayeing that on monday he will b able to come home ..but i was wondering is it harder to take care of a preemie than a newborn?

  3. Michelle Yvonne Burns says:

    It really depends on what monitors and medications that your son still needs when he is released from the hospital. We had medications that we required 6 times a day and different ones at different times, so we made a spread sheet.

    We had a monitor for only six weeks, but we had Dr’s appointments every few days for the first few months. We did not leave the house any other time except for Sarai’s appointments for at least four months after we came home and we had strict rules about people coming over. When it began to warm up in the summer we began talking walks around the neighborhood.

    She still needed food every two hours and many times I found we both slept better on a recliner, between two pillows and with her strapped to me skin to skin. She was used to the noise in the NICU and I think hearing the sound of my heartbeat and breathing helped her sleep.

    She has been on Synagis shots to ward off RSV since September and we are nearly complete with these for this season. I am looking forward to the spring & summer this year and hope we can do some of the fun things we missed out on last year.

    Just remember that you are your son’s biggest advocate and voice and you will be his mother for life. You must be the one to feel comfortable with whatever decisions are made no matter what anyone else tells you. You can’t be over protective of a preemie; your job is to keep him healthy. Good luck and our prayers are with you and all parents of preemies.

    • courtneycuevas says:

      he is supposed to come home with out anything but im still pretty nervous about it. because i have a daughter and im afraid the she will end up hurting him because he is only 34 weeks now and cant really hold his head that good. and im so scared that he will stop breathing or something and i wont notice it …and do doctor usually put u on restriction at home..as in no one can come over and you cant go any where?

    • Michelle Yvonne Burns says:

      The Dr’s did have me sign a form saying we would restrict visitors and outings. No going to Wal-Mart, church, restaurants or other crowded places for at least three to four months. Sarai had just begun to get strength in her neck. We were very careful and I recommend having a sleeping pad, I think it might be called an Angel pad sometimes. It goes underneath the bedding and will detect non-movement from the baby and sound an alarm.

      We had Sarai sleep with us in our bed room in her crib. She came home sleeping on a wedge with a sling, so for about four months she was strapped to her sling on her belly. If your son was on caffeine or other breathing medication he will be coming home with a monitor.

      I would not worry about your daughter too much. If she has not met the baby yet, try to introduce them slowly. Watching you care for the baby will teach her how to live around the baby too. It is a day to day journey and it requires your constant attention. It does take a lot out of you for the first few months, but it will get better each day. One day you’ll realize he doesn’t need you all the time and you might even miss it! Good luck

  4. My daughter was born at 25 weeks, 1 day on the 6th of January 2010 weighing 730g and measuring 32cm.She was in NICU for 120 days, also having her PDA ligated and various blood transfusions. She came home on oxygen support, but has been free since September. Our only problems are visual difficulties (not ROP related) and some developmental delays probably due to this. It is inspiring to read of other babies similar to my own daughter and I know that anyone who has just given birth to a new 25-weeker will be helped greatly by reading your story.

    • Michelle Yvonne Burns says:

      Wow, Sarai and your daughter we very much alike with their stories. It helped me to be in touch with this site and others while we were in the hospital and after we came home. Many times I felt I was alone on another planet and life was continuing on all around me.

  5. Amanda Gonzales says:

    I’m amazed at your story! I’m 12 weeks pregnant with Twins. There are so many complications that they are trying to get me to 25 weeks then deliver by c-section. I’m on so many medications for the twins and myself that it’s really hard to keep up. I’m very worried about them and my recovery time. I really hope they survive. Your story gives me hope. Thank you for sharing! Amanda

  6. Hi @Amanda,
    If you’d like support from another parent who has been on a similar journey, please feel free to drop us a line at http://www.HandtoHold.org since our mission is to help parents no matter where they are on their journey. Anticipating a premature birth is beyond scary. If you’d rather, we have a few facebook communities where parents support each other: http://www.facebook.com/preemiebabies101 and http://www.facebook.com/handtohold. Sending all good wishes to you and your little ones, Amy Carr, fellow preemie mama

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