Our Story continues.. Life in the NICU: A Rocky Road

Read the first part of Our Story here.  Then, come back to today’s post.  See you soon 🙂

Monday morning, our little girls entered our world.  Josie (Baby B, the TTTS Donor who had too little fluid making it difficult for her to grow) was doing great.  She was breathing room air within her first 24 hours and I even got to hold her on Tuesday for the first time.  She was certainly itty bitty, 3 pounds is pretty little!
Anna (Baby A, the TTTS Recipient who had too much fluid in her amniotic sac causing Congestive Heart Failure) had a rough start.  Anna spent the first week needing some breathing help with a ventilator and then CPAP, along with several other preemie type issues.  We were anxious to see her sweet little face, without tubes, and to get to hold her.
On Saturday (at five days old), Anna was weaned off CPAP and onto nasal cannula oxygen!  I finally got to hold our second baby girl.  Her eyes were wide open and a couple times she even looked like she was laughing.  She seemed much more peaceful that day.  Then, the nurse asked if I’d like to hold both of our girls together.  YOU BET I DO!
Joy flooded my heart to be able to hold both of our little girls and to see them so close to each other.  What miracles!  
Sunday morning, I was able to go to church again.  It was the first time in months!  There is something amazing and indescribable about spending time in worship after you have just been face to face with a miracle.  When we got home from church, my phone rang.  It was one of the NICU nurses telling me we needed to come down to the hospital right away.  Anna was very sick and needed emergency surgery for a perforated bowel.  Anna had Necrotizing Enterocolitis aka NEC.  Being a Special Care Nursery Nurse, I knew this had a high mortality rate and was very serious.   I felt almost physically crushed while tears streamed down my cheeks.   After 3 months of not knowing if they would ever be born alive, I had thought we were finally in the clear.  Yet here we were again, on our knees, pleading with our heavenly Father, for His sovereign help!  We got in the car right away.  While Dan drove to the hospital I frantically called a few people to ask them to pray with us for Anna.
When we arrived at the hospital, they were prepping Anna for surgery.  She did not look good.  The Pediatric Surgeon arrived and introduced himself.  He explained what happened and what he was going to do.  When he was all done he went on to tell us that his In-laws are our neighbors.  He said he was actually sitting at their table with them, right by their front window.  They were telling him about our girls, that they had TTTS and were preemies at his hospital NICU.  Then his phone rang and it was the nurse telling him about Anna.  He said he watched us back up out of our driveway and followed us down to the hospital.  What crazy comfort that brought us in this time of desperation.   We knew this surgeon had a vested interest in our baby girl.  He took her down for surgery and I went into the pumping room.  I looked out the window and the snowflakes almost took my breath away.  They were huge and falling so soft and slow.  I felt like I saw a glimpse of hope.

Anna came out of surgery fine and ended up only loosing a small section of her jejunum (small intestine) and was left with an ostomy.

A few weeks later they were able to take down her ostomy.   We were very excited because after her take down surgery, they were able to be move our girls closer to us, to the Special Care Nursery that I worked in.  It was such a blessing to have my friends and co-workers caring for our babies.

After about two months, our girls got to come home.  We were able to close this chapter of our life and thank our Sovereign God that we were now a family of five, all under one roof, together.

Next up… Food Allergies Arrive!


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  1. 1

    I am a new reader/subscriber to your blog. Today's post has blessed me beyond words. As a mother of four healthy children ages 16-26 (I guess I am really a mom to young adults now!)we too endured a trial similar to yours when I was pregnant for our second daughter. Just 6 months in a routine ultrasound revealed an "issue" that had me sent to hospital emergency directly from the Dr. office. After a week of doppler, stress and non-stress tests it was determined our baby needed to be delivered ASAP. Our baby girl, Melissa, was delivered prematurely weighing in at just over 2 lbs and within hours was diagnosed as having a rare genetic anomaly Trisomy 13. We spent nine days commuting with our firstborn daughter (just 2 years old)to the NICU where each day another devastating truth about Melissa's condition was revealed. After nine days the Lord decided to bring our baby home to Him and I held her as she drew her last breath. We were heartbroken, faith-shaken, shocked. Looking back I see ALL that the Lord worked through that trial and how it forever changed our marriage (stronger) our faith (deeper) and God blessed us with three more healthy babies. I am so thrilled to see victory and homecomings from the NICU!! We have had years of allergies and a few other conditions with our four…but they pale in comparison to all that our lives hold. To God be the glory and may He continue to bless your sweet family! 🙂

  2. 2

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