Losing my son - aged 28 days :(

[sugarnacl2]

This is my first time here.  I wanted to share my story and hopefully get in touch with some who have been through similar circumstances. 

 

My husband and I waited a long time to have children... until our careers were in place and we had enough money to support them.  I became pregnant in May 2013 and was so excited!  I had 5 ultrasounds and everything looked great.  I had the easiest pregnancy and due to some low grade chronic hypertension, I was induced at 39 weeks.  When my son was born via emergency C-section (he was exhibiting fetal distress) 16 hrs after I was induced (Feb 6) , he was lifted up so I could see him.  He was full of red spots all over his body.  They assured me that he was beautiful and took him back to clean him off. The nurses said that they hadn't seen anything like this is their 35 years.  What was supposed to be the happiest day of my life quickly turned into a nightmare of sorts. 

 

Later that same day, he was taken to the NICU of the local childrens hospital due to low platelet count.  Turns out he also had an enlarged spleen and liver and severe jaundice (direct - which is rare and ominous, and indirect).  He had anemia and a host of other issues that can happen with congenital infection... so they chased that... for 2 weeks always coming up with negative results of their PCRs and cultures.

 

Fast forward 2 weeks, our son, Jack, was diagnosed with Hemophagocytic Lymphohistiocytosis (HLH), a rare genetic disease that neither my husband or my family had ever experienced before as both of our families always had healthy children.  Within those 2 weeks, he swelled up (fluid retention and ascites) to nearly double his birth weight.

 

Last Wednesday, on March 5, 2014 entering week 2 of chemo, he passed away in my arms.  His lungs filled up with blood and every gasp required me to wipe his little mouth and nose.  Having him die in my arms was the hardest thing I have ever gone through in my life.  The 28 days we had with him was a gift and I will never forget that... but I'm having a problem getting the vision of him dying out of my head and my heart.  Thank you for listening.

[meeshmomthree]

I'm sorry for your loss.  I know everybody is saying that right now, and it feels hollow, but it is very true.  In July 2013, my husband and I found out that I was pregnant, which was a bit of a shocker because we weren't trying, but we were so excited because we always wanted another child but had resigned ourselves to having one child.  A couple of weeks later, we found out we were having twins.  It was a really difficult pregnancy because they were twins, using the same placenta, I turned 40 while pregnant, had to go to the doctor twice a week sometimes, and because of the way they were situated, I could barely walk.  I was still excited, went through all the milestones, found out they were girls, etc... They told me of all the things that could go wrong, but preterm labor wasn't one of them because my cervix measured excellent.

 

But that's exactly what happened.  In the early morning hours of December 6, I had to be rushed to the hospital, then rushed to the OR for an emergency C-section.  I was only 24 weeks 5 days, and I knew they may not make it.  I struggled to relax as they prepped me for the surgery, and my husband wasn't there because our 3-year-old was safe asleep in his bed.  When I woke up from the anesthesia, my mother was at the side of my bed, and she told me the girls looked good, that they were pink.  I felt sure that they had a fighting chance, even though they came so early, so I went back to sleep.

 

At about 10 am, the NICU doctor came into my room and asked me if I had named my girls.  I said we had, and they proceeded to tell me that one of them was not doing well.  I still couldn't get out of bed, so they wheeled me to the NICU to see them.  They were so tiny, but they said that my other girl was doing a lot better.

 

But neither of them made it.  At 12:05 pm, Dahlia passed in my arms.  Her sister, Iris, passed 20 minutes later.  The major cause of death in both of them was Respiratory Distress Syndrome, a major problem in premature infants.  It had caused acidosis in both girls.  Even with oxygen, they couldn't get enough oxygen in their blood in order to survive.  I missed most of their lives because I was recovering from general anesthesia and on morphine.  I feel robbed, but I feel honored to have been their mother, because they fought with everything they had.

 

I applaud your strength and your ability to tell your story so soon after your loss.  It helped me to read it, as I hope my story helps you.  It is so hard to lose a child after months of anticipation and planning, and we have so little in memories as we grieve.  Thank you for sharing your story.

[MissKylie]

So sorry for your loss. I wish there are words that will help ease the heaviness in your heart and answers for the questions that seems to never end...

 

I lost my 5-year old daughter due to cancer on a New Year's day.

 

When I gave birth to her, she already had a tumor in her tailbone which we had surgically removed when she's 26 days old. All along, we believed that she'll grow up like a normal kid. We had all the test needed and nothing out of ordinary came up.

 

Until one fateful day, we rushed her to the hospital. The same hospital that we've brought her for the last 2 years. She had multiple swollen lymph nodes and soon to find out she have tumor in her lungs that pressed her heart.

 

She had cancer which was not staged or diagnosed as to what type of non hodgkin's lymphoma.

 

We fought for only a month. It was in last week of November that we rushed her 3x and discharged as they said it was just viral. And thereafter, found as cancer.

 

On January 1, 2014, she died of cardiac arrest in my arms. Her organs are no longer functioning properly. My sweet Kylie died and lost her battle against cancer. It was a battle lost but well fought. 

 

It takes a lot of courage and strength to keep our sanity and spirit altogether. Being an angel mom is an honor and we need to continue so that our angels loss on earth will not be in vain. 

 

Thank you both for sharing your story. This site has been my lifeline specially on the first weeks that the experience are still fresh and raw. It's been 69 days since God took our Kylie home. There are days that I questioned God, there are days that I pray to God...He will understand..

 

And in this site...it's okay that we cry a lot and grieve. We will always be their mommies even they're now in heaven.

 

Peace and Love,

 

Kylie's Mommy- Mommy Cherry