Little Lydia and Dear Damian

My sweet Hope and her boyfriend Jon are going thru a very tough time with their twins. I'm asking everyone to read Miss Lydia's story and help in anyway possible. All time and efforts are going to making sure she and her twin brother Damian are well cared for and with Ms. Lydia back in the hospital times are tough. Bills are starting to pile up. I'm trying to help these new parents thru a really rough patch. Anything you're able to donate or even just sharing would be greatly appreciated, anything to help these sweet babies and their parents. Please take a moment and read Ms. Lydia's story below.

The special story of a special girl: Lydia Marie ❇

I found out I was pregnant with Damian and Lydia March 19, 2022. After two pregnancy tests came back VERY positive, I went to a non-profit clinic (thank you, FirstLook) for a confirmation ultrasound, where they found two fetuses.

I didn't have health insurance, so it wasn't until I was 22 weeks along that I was finally able to get in with an OBGYN that would take Medicaid. Since I was so far along, it was my last chance to have genetic testing done on my blood to give indication of any abnormalities or disorders. A week later, the results came back that there was a 3 in 10 chance that one or both babies had tested positive for a disorder called Edward's Syndrome (Trisomy 18).

About Trisomy 18: Google has research articles and links to in depth research on T-18, but this is the gist. For a very long time, T-18 has been considered "incompatible with life". It is a disorder very similar to Down's Syndrome (T-21) in the way that it replicates a chromome(s) three times instead of twice. In Down's, the 21st chromosome is effected, whereas Edward's is affecting the 18th, which is a bigger chromosome than the 21st, leading to more developmental and cognitive issues. Statistically, Edward's Syndrome babies don't make it out of the first pregnancy trimester, let alone their first year. It can cause developmental issues of the heart, lungs, intestines, and brain. The complications with these accompanying illnesses/disorders are normally a large factor in these babies passing.

After the genetic testing came back, I opted to have a double amniocentesis to find out for sure if either baby was sick, and if they were, which it was. Damian came back completely clear, and Lydia tested positively. They briefly mentioned abortion to me (which A. Would have put Damian at risk because he would have been delivered early, and B. They would have had to send me to a different state for it to even be a feasible option), which I very quickly shut down because I wanted both of my babies and didn't feel it was my place to give up on her before she had a chance to try. They warned me that if she passed while I was still pregnant, I'd have to carry her to term until her brother could be safely delivered.

On top of her genetic disorder (more so because of), Lydia has a Ventricular Septal Defect (VSD), Patent Ductus Arteriosus (PDA), an immature retina, and several other small T-18 signs/symptoms. That being said, she has done nothing but beat the odds. She wasn't expected to survive birth, let alone the 8 weeks she's been earth side with us. She's our beautiful miracle.

Lydia Marie was discharged to come home the Monday before Christmas on hospice/palliative care, as well as on a feeding (NG) tube. Tuesday, her pediatrician sent us to Childrens' Dallas due to difficulty breathing/chest retractions via transport. Children's all but ignored her, refused to provide formula over the almost 6 hours we were there (even went so far as to come close the door on my screaming infant so they didnt have to hear her, and then tell me maybe next time I should bring her food) and sent us home after I demanded we be discharged so I could feed my daughter. She was sent home on supportive oxygen, which she did well with for a couple days. Christmas day, in a matter of hours, she went from pink and alert to grey and lethargic. We decided to bring her to Cook Children's (who are AMAZING btw), and while we were switching her from her oxygen concentrator to her portable tank, she had an apneic episode in my arms, blue lips and all. I thought we had lost her. As soon as she was put back on oxygen, she perked back up and was screaming at me. When we got her to the ER, and they saw how sick she was, they shoved me out of the way and immediately started working on her. Up until this point, I had been dead set against intubation, but she was so sick. We made the decision to have her intubated as her best chance.

We found out Lydia has rhinovirus, enterovirus, and an urinary tract infection. She's currently on antibiotics for the UTI, still intubated, had a blood transfusion, the whole nine yards. All of her doctors, as well as her hospice team, have said that if it was her T-18 causing the respiratory distress, intubating her would have been delaying the ineveitable, whereas, since she has viruses and an infection, the intubation is actually beneficial to give her little lungs and heart a break. She's stable, nice and pink, and they're finally at a position with her that they've been able to start feeding her again. She's our little fighter, and I have so much faith in her.

This is why I was secretive with my pregnancy. This is why I am so quiet about our children. Realistically, I could lose my daughter to her genetic condition. And now she's so sick, it's terrifying. To top it off, I have a whole other baby that I have to be separated from. Everything I do is for my children. And that is exactly why I WILL NOT chase people down to be in their lives. I'm busy making sure they have the best ones possible, regardless of her condition.

If you read this far, thank you. Please keep us in your prayers and hearts, and send us all the good thoughts, vibes, whatever you can spare. Much love ❤️