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Sharing My Story *long & pics in replies*

Posted by on Feb. 5, 2014 at 4:35 PM
  • 27 Replies
2 moms liked this

Hey everyone. It's been awhile since I shared my story and there might be a lot of you who don't know the whole story. So thought I would share again. 

My name is Desiree. I have three boys; William - 6 yrs, Mason - 4 yrs, and Christian - 5 months. And one daughter in heaven, Isabelle Colleen who would have been 2 yrs in May. In September 2011 we found out I was pregnant with our 3rd child and we were hoping it was our long awaited and desired daughter. In November 2011 When I was 11 weeks pregnant I opted to do a genetic ultrasound due to my son Mason being born with a cleft palate and not finding out until birth. He had several health issues associated with his cleft palate. And even though we knew a cleft palate is hard to detect in an ultrasound we wanted to prepare for anything. What we weren't expecting is our baby being diagnosed with Anencephaly which is a fatal birth defect in where most the brain and skull is missing. A lot of Anencephaly babies pass in the womb and most that make it to labor are stillborn or pass a few minutes after birth. But there are a handful that are alive for days, months and even fewer for years. 

It was the hardest thing I ever had to hear. I was devastated. And DH was in the army at the time and out of state for training so I was completely and utterly alone when I got the news. It sucked. I cried so much that day. When I walked towards the elevator with a single ultrasound photo with tears in my eyes I had a guy ask me if I got good news. I just started balling. I felt so bad for him for asking such an innocent question and not knowing that's the worst thing you could ask me at that moment. When DH came home the next day we took a few days to process this horrible news then decided to carry our precious baby for as long as we could. If we only had this baby for a short time we wanted to cherish and enjoy the time we had. 

In the weeks followed we had an amniocentesis done to confirm she did in fact have a Neural tube defect which Anencephaly falls under. They ran tests on her genes and chromosomes looking for what might have caused the Anencephaly. And the results were that the baby was absolutely perfect except for the Anencephaly. There was no known cause. And what was another big blow was that the baby was the precious daughter we had wanted so much. My husband took it tremendously hard. 

What was also difficult was telling our boys. We wondered how they could understand and process it. At the time William was 4 yrs and Mason 2 yrs. William actually understood pretty well for his age. I got children books to help explain. And I told them that when Isabelle would be born that she would go straight to heaven. That her head was not like ours and she had like an owie that could not be fixed. And we had overwhelming support and love from family and friends. We were so blessed. 

On May 3rd, 2012 Isabelle Colleen Johnson was born at 6:15 pm weighing 5lb 12oz and 18in long. She was absolutely beautiful. I had her vaginally and it was a truly amazing experience. She was breech with feet first. I felt her little feet as she came out. When they checked her heartbeat and said she was gone I started crying. I wanted so much to have her be born alive and just spend a few minutes with her alive in my arms. I was heartbroken how much I had hoped for that. My labor with Isabelle was truly the easiest out of all my pregnancies. And so serene and peaceful. 

My in-laws were there with our two older boys. One of my sisters with my niece and nephew. A woman from church and a photographer from Now I Lay Me Down To Sleep (NILMDTS, a non-profit organization that takes photos for free). I treasure those photos even though they are still hard to look at. They took hand and foot prints for us. And even a hand mold that I love so much. 

We only had Isabelle with us for less than 6 hours. Which was never enough time. We could have had longer but we were on a time constraint since we wanted to donate Isabelle's heart valves. We wanted to try and help save a family from experiencing the same pain of losing a baby. Giving Isabelle over to the nurse was one of the hardest things I ever had to do in my life. I was crying the whole time and just sobbed in my husband's arms after she was gone. 

We had Isabelle cremated and taken to be placed in a national cementery. Thanks to my husband's service it was free. And they even saved a spot right next to her for DH and I. Being in a funeral procession for your baby is awful. I still cry when I see a funeral procession going down the road because it brings back all those memories and feelings of that day. 

I miss Isabelle every minute of every day but I made her a promise to be a good mother to her brothers and to live life for her. I know Isabelle would want me to be happy and enjoy life, not to stop living it because she already knows how much I miss and love her. 

So that is my story of my sweet Isabelle. 

by on Feb. 5, 2014 at 4:35 PM
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Replies (1-10):
by Desiree-admin on Feb. 5, 2014 at 4:37 PM

The moment I was told no heart beat

by Desiree-admin on Feb. 5, 2014 at 4:39 PM

Holding my Isabelle

by Desiree-admin on Feb. 5, 2014 at 4:41 PM

Anthony, me, William, Mason and Isabelle

by on Feb. 5, 2014 at 5:19 PM
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Omg I am so sorry! Brought tears to my eyes reading your story. You are a very brave woman!
by on Feb. 5, 2014 at 5:27 PM
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by Desiree-admin on Feb. 5, 2014 at 10:51 PM

 Thank you.

Quoting Gcaronite: Omg I am so sorry! Brought tears to my eyes reading your story. You are a very brave woman!


by Stacey on Feb. 5, 2014 at 11:33 PM
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I just really dont know what to say, your baby girl was beautiful and im so sorry she couldnt stay. My heart hurts so much for u and all of us......

Our angel was born to heaven on 1/10/2014 at 14wks 3days.

by on Feb. 5, 2014 at 11:43 PM
Bawling my eyes out. Heartbroken for you and your family. I think it's beautiful that she was able to save another baby! My Sullivan was also an organ donor ♥ ♥ that's what made me start crying. I wish so badly I could meet the baby he saved.
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by on Feb. 5, 2014 at 11:49 PM
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So sorry
by Tina on Feb. 6, 2014 at 1:22 AM
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*Hugs* Even though I have followed your story for sometime, it still brings tears to my heart. Bless your sweet Isabelle, she is truly beautiful and I am sure she brightens Heaven.
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