House cleaning is like stringing beads with no knot at the end of the thread.

"Usually the Lord gives us the overall objectives to be accomplished and some guidelines to follow, but he expects us to work out most of the details and methods." -Ezra Taft Benson-

Thursday, February 14, 2019

A somber day

Two years ago today, our little girl passed away. Two years ago today, my heart was ripped to pieces.
Three years ago today, our little girl was doing well, had just had her meds fixed, and was home from the hospital.

Our sweet Saralyn was the light. She was so amazing. Born with Trisomy 18, there was no decision to be made. We made the decision when we decided to be together.. Never ever was murder (termination or abortion) ever something we would consider.

When we were pregnant with our oldest, we were told that the baby could be down syndrome, and we should abort. NOPE.  He was not.
Two years later, pregnant again, and we were told this baby was down syndrome, we should abort. NOPE. He was not.
Didn't let them do the test on any other pregnancy.. Until, number 9. They wouldn't let us leave the ultrasound clinic until we submitted to do a NIPT blood test. Why? Because they saw some cysts on her brain.. which by the way, were gone when I was 34 weeks pregnant. They also saw something with her heart, but wouldn't be specific.
MY midwife refused to support us during this time, and we searched and searched for an OB. We decided that if this baby needed support when she was born, that we would need to birth in a hospital with a very skilled NICU. We chose, Swedish Cherry Hill in Seattle.

We met our new OB/GYN, we met with the head of the NICU. WE flat out told them, we are giving this baby EVERY chance possible for life.
 We also went to a cardiac specialist for a special heart scan during my pregnancy. They found our baby girl had VSDs, ventricular septal defects, aka holes in her heart.
After several scans, which she hated, you could see her running from the scanner on my belly. We prayed and hoped for the best, and prepared for the worst.

When she was born, via c-section, due to being breech and having the cord wrapped around her neck so she couldn't turn, no one in the room could believe she was Trisomy 18, aka Edward's Syndrome, because she didn't look it. She had a LOUD cry (T18 babies usually have a silent or very quiet cry), she breathed on her own, her head was round (usually T18 baby's have specific shape to their head).

I only got to see her for 1 minute before she and Daddy were whisked off to the NICU.
Saralyn after 24 hours, ended up needing a feeding tube (NG-tube) and she was doing well. Although very small. Yes she had 2 small holes in her heart, but she was doing well. We spent 9 nights and 10 days in the NICU, then we came home, on oxygen and a feeding tube. At first we were told she couldn't go home until she was off the feeding tube.. I informed the NICU doctor that millions of people are on feeding tubes AT HOME. and oxygen.

We had several hospital stays, the first one discovered she needed to be on Lasix because of the hypertension caused by her VSDs, but she was being weaned off when she passed because her VSDs closed on their own. She only had oxygen as support as needed. When she was 6 months old, she was given a G-tube, so yes, she had a tube going directly in to her stomach to help her eat. She loathed bananas, but loved ice cream and Cheetos. Her eyes would dilate when you gave her a taste of ice cream, she loved vanilla.

 Saralyn defied the odds:
1. she lived, they said she would die soon after birth if she even survived the pregnancy
2. she had 100% vision, they said she would be blind
3. she had 100% hearing, they said she would be hearing impaired or deaf
4. she moved, this little girl would scoot off her play mat to smack her feet on the hard wood floor. She also learned to roll from back to tummy and was learning to go from tummy to back.
5. She spoke. They said she would never communicate, she would be a vegetable. This was so far from the truth! Saralyn said, "mama", "dee" (daddy), "eeeet" (eat), "na" (no), "uh huh" (yes) and she also said "HEYYYY" at 4 months !!! Because we would say, "Hey beautiful, how are you doing?" when ever we saw her watching us.  She would say Hey, whenever she saw someone come into the room, or walk past her bassinet. The first time she rolled from back to tummy she said, "I did it" !!  Yes, it was clear as day! She also would arch her back when she wanted to be picked up.
6. She recognized family. They said she would have no comprehension of what was going on. She would give family members she hadn't seen for a couple hours the biggest grins!

Saralyn went into the hospital a couple of time due to illness, RSV and or pneumonia.  BUT, she usually got better. I think what sent her into sepsis our last trip, was that they gave her a broad spectrum antibiotic shot.. What they should have given her was high doses of Vitamin C through her IV. I will forever regret letting them give that to her.   The other down fall was medical discrimination. NOT in the ER, but in the room after we were admitted. The doctor came in and yelled at me saying she wouldn't  be sick if we had immunized.. this was the same hospital where she was born. The same hospital that refused to give her immunizations, saying she couldn't have them, because she was just going to die anyways.
I may have done the RSV shot had they let us. But she was too young for anything else. But what is crazy, the same shot and dose of immunization is given to a 200 pound man, as is given to a 5 pound neonate baby, aka newborn.. how is this safe?

But, Saralyn didn't die because of immunizations. She died because that same doctor that yelled at me about shots, also didn't ever examine her. The entire time she was in his care, he ignored her. It was the nurses that helped with everything. And when the shift changed and we got a new doctor, he was all over her care, trying to help her.. but by this time, that darned antibiotic had done it's damage.. I only wish that hospital knew of the benefits of high dose Vitamin C via I.V.   That could have saved her.

But instead, today marks 2 years since my sweet baby girl gained her angel wings. And my arms are empty, my heart is broken, and my life will never feel right again. It marks 2 years of wearing a mask, trying to live with out my sweet girl.
I pray every day that she and the Lord will forgive me, I feel I failed both of them.
I am so thankful for the time we had, but really wish it had been longer.

1 comment:

  1. Your family is in my thoughts and prayers. I am so glad I got the chance to meet your little angle.