“She has started smiling, and we are hoping to be able to get her more tummy time…”
Saralyn Kenyon, 11/25/2015, Trisomy 18, Issaquah, WA
Update: Saralyn is over 1 year old now. She has been doing pretty good. She just started turning onto her tummy from her back in January 2017. Our last hospital visit was in August for a very bad respiratory infection. She now has a pulmonologist on her team. She has hit almost 14 pounds, and at 1 year old she was triple her birth weight!!!
She tells us no, has her way of saying yes, calls for dahhhdee and eeeeee (mommy). Loves to play on her play mat. Loves her siblings, and playing with them. She had a gastro tube (tubie) placed at 6 months old. It has helped her not to vomit as often, but oh she likes to get us when we vent her.
We love her to pieces, and the song that makes me think of her is “Just the Way You Are”… cause when she smiles, the whole world stops and stares for awhile, cause she is amazing !
Original: What a surprise! When we went in for our routine 20 week ultrasound, the tech noticed a few oddities. Large cysts in the brain, and small size of baby. That was it. The doctor came in and looked at her neck, hands, feet and heart. Everything looked normal. They really pressured us to do genetic testing via Non Invasive Prenatal Testing (NIPT). We said, it won’t change our mind about our pregnancy or the baby. But they kept pushing it, wouldn’t let us leave until we agreed to the test.
We did the test. The doctor said we should have results in 10 to 14 days. BUT, 5 days later she called and all she said was, “I’m so sorry. Your baby has trisomy 18. I’m so sorry.” I asked if this was a screening test or a diagnostic test. She said it was a screen. So I asked if it could be wrong. She said absolutely not. So I started researching. And actually, the doctor was wrong. The NIPT is not always correct.
My midwife I had used for 17 years was not supportive of continuing the pregnancy. This was a huge shock, and very painful. So we interviewed an OB, he said they would do all they could for me, but would ” do NOTHING for the baby.. because she is just going to die anyway.” Fired him immediately. Interviewed another doctor, she was great.. but the hospital where we wanted to deliver didn’t have a high enough NICU incase baby needed to be intubated or needed more help. So, we changed providers again.
This time we met with an OB and the head of the NICU at the hospital where we were going to deliver. WE let them know we wanted the best chance at life possible for our little girl. BUT if she wasn’t even trying to breath or her heart was not beating then we would follow the Lord’s direction. They were fine with this. During an ultrasound it was discovered baby was breach, even at 38 weeks, and it wasn’t looking like she was able to turn.
After a few scares during non stress tests and baby’s heart stopping or appearing to stop, and being monitored in L & D for 6 hours at a time.. they finally decided enough was enough and were taken for a C-section. This was baby #9, and my first c-section .. I was a shaking nervous wreck.
The doctor had a challenge. Apparently baby was breach because she had wrapped the cord around her neck pretty tightly and was snug up against the placenta. She finally was delivered, and was very pretty, and pinked up. Her head was round, and except for being small, looked normal.
Saralyn was taken to the NICU after being evaluated in surgery. She was partially intubated in surgery room, but it was later taken out after they got all the fluid out of her throat. Once I had recovered enough, the nurse took me on my bed to the NICU to see Saralyn. I tried to nurse her but she wouldn’t latch.
I struggled with pumping and trying to get a supply for Saralyn. In the meantime, Saralyn had an echo of her heart. She had 2 small holes in her heart. And they were watching her PDA, hoping it would close. Saralyn was a trooper, dealing with heal pokes every 3 hours, an I.V. , being put on a high pressure oxygen called vapotherm. All the leads and tubes weighed more than she did. They wouldn’t let her eat until she proved her plumbing was working correctly. Several tests later, and she was permitted to eat.
I was very blessed at Swedish First Hill in Seattle. They truly believe in kangaroo care, aka going skin to skin with your baby. Whether it is mom, dad, or grandparent. I was skin to skin with Saralyn when I wasn’t pumping. But would have to leave to eat, use the restroom, and shower. BUT, they wanted parents with their babies as much as possible. AND I WAS.
We truly believe that being skin to skin is what helped my milk come in and helped Saralyn to recover so quickly. On day 8 we were moved to level 2 NICU, and on day 9 I stayed with Saralyn in a “rooming in room” where they made sure I knew how to care for her, and how to change her NG tube.
We were sent home on day 10 with NG supplies, oxygen and our baby.
WE have had our struggles. 5 days later we were in the ER. Saralyn’s heart seemed to be stopping or skipping a beat. They didn’t find anything wrong. A few weeks later her cardiologist put a holter monitor on her and saw what we were hearing, nothing to worry about though.
The beginning of March, we ended up back in the ER with Saralyn. She was going into heart failure. Although I didn’t know that was what was happening. She kept arching her back, her eyes would roll back, and she would turn blue. And she had been very sweaty for about 5 days. It seems it was not a good idea for her cardiologist to take her off her Lasix. After 3 days at the PICU at Swedish we were sent home with a much pinker, happier baby, along with some Lasix.
Today she is 17 weeks old. Tomorrow she will be “4 months”. She has started smiling, and we are hoping to be able to get her more tummy time now that she is off the oxygen and all the leads. We still have her on a monitor for her heart and oxygen saturations, but one wire is much easier to deal with.
We are very thankful for our family, friends and church members who all have fasted and prayed for Saralyn. Being a member of the Church of Jesus Christ of Latterdays Saints has helped me through this trial the Lord has given my family. And I thank Him everyday for His help.