February 23, 2018
Dear friends and family,
Hello to you! We write this from the Salem NICU. Here we sit and watch the sky lighten and darken in a morphed cycle of hours that have all blended together. Cody and I have received your text messages and read your Facebook comments. Please accept our apologies for the lack of information or response. Here is an update for all of you who have been wondering about our current situation. Where to start?
We found out we were expecting, approximately three days after Cody cancelled his vasectomy and relented to go for “one more baby”. At 15 weeks I measured what would be a normal 20 week size. Two heart beats would clear up that confusion. Surprise! Cody replaced his hesitations about having three children with extreme excitement to have four. I however, was slightly terrified. They say if you can manage three kids that you can manage any number....I guess we’ll find out!
Loe and behold, our twin girls, Annette Faith and Charlotte Etta, or Nettie and Lottie, are monochromatic diamniotic twins. ‘Mono di’ twins share a placenta, have separate sacks, and are high risk pregnancies. ‘High risk’ translates to: you’ll have many many ultrasounds. The greatest risk I experienced was bringing two toddler boys to those appointments!
Our first ultrasound with the maternal fetal medicine specialist was a doozy. That long day we bounced from ultrasounds to echocardiograms and back, seeing six specialists. They informed us that unfortunately, both girls had heart defects. Time and time again they showed us the black and white pictures of Annette’s VSD, and Charlotte’s AV Canal (atrioventricular septal defect). AV canals are seen in 50% of children born with Down syndrome. They mapped out what our future may look like: multiple open heart surgeries, one baby relying on oxygen and a feeding tube and a 50% chance that both babies would have Down syndrome. Six times that day we refused to terminate our pregnancy.
We prayed. We prayed for the girls hearts. We prayed for a new home that would fit us. We prayed for Cody, taking on more with his already growing class and work load. You also prayed. You surrounded us with prayers. Sheltered us. You told us when and what you were petitioning for on our behalf. Those prayers brought a peace from God that is inexplicable. With all the question marks in our future, we were shielded from worry and fear. We prayed for big and small things alike, learning not to limit our God with only requests we thought ourselves capable of, but the miraculous ones that only He can fulfill. We clung to truth; painting God’s word, singing God’s word, taping index cards scribbled with God’s word on each wall and pantry door. And through it, we remained calm in a time of no answers or certainty. And as the weeks passed, that’s where we camped out.
Then all of a sudden, the action picked up. The 25th we got the keys to our new home. The 27th we started renovations. The 30th Cody was offered a new job. The 31st I was induced.
Labor. What all the women want to hear and the men can barely stomach.
(Fellas, you can skip this part if you’d like)
(Ok boys, you can start reading again).
Nettie and Lottie were born February 1st at 1:06 and 1:08, weighing 5lbs and 4lbs 12oz. Out came the CPAP (oxygen). In went the feeding tubes and IVs. Out went the 50/50 Down syndrome chance. The girls have Down syndrome,100% and it’s adorable!
Please don’t feel awkward mentioning it, we don’t. We knew that life would be better, more full and rich with these ladies, and these past 22 days with them outside the womb has already confirmed and surpassed it. Our only concerns are that 1. These little blessings will be over spoiled, because we know our community! And 2. That we haven’t purchased a lotto ticket yet! People, the odds of identical twins with Down syndrome is 1/ 1 million!!!!!! Someone get us on Ellen!
And God has continued to show up! The next morning, let me emphasize: NEXT MORNING,both girls were off oxygen. Boom. Then, they didn’t need IVs, gonzo. As of now, Nettie is breastfeeding and taking a bottle so well that she has had her feeding tube removed. As for Lottie; it turns out the key to an AV canal is if it is balanced or not. Thankfully, Lottie’s is at this time, balanced. This is another giant praise. It means at this point, she too may eventually go home with no feeding tube either. Her progress has been slow, and we have no set time frame for how long we will be here. As long as she is breathing, I’m happy. Besides, they don’t call them ‘baby steps’ for nothing.
And then there’s the milk. I didn’t make enough milk for the girls. The first 5 days they allow you to use a supplied donor milk; after day five you are cut off. Usually they give you a heads up on the cut off date, but no one had remembered to tell me.
Day 1, I began my battle with the pump. Days 2- 3 were failures. Day 4, I reached out in desperation to friends for advice. Morning of day 5 my beautiful friend, Megan Halligan sent a text asking if I needed some of the breastmilk she had frozen. I wasn’t able to reply at that moment, rushing off to get an update on the girls. The update was: ‘You are out of donor milk, they will be on formula now.’ My heart sank. The feeling of failure began to seep into my emotions. Then, I thought of Megan’s text from five minutes prior!
The nurse said that bringing in your own donor milk is not commonly allowed, due to obvious risks and liabilities, but assured us she would ask the doctor. That day, we just so happen to have a new neonatologist; one that knew Seth and Megan!!! He gave us the go ahead, and an hour later, our girls began drinking Megan’s milk. I can’t help but cry. God’s timing. His plan so beautifully orchestrated. His blatant provision. It’s overwhelming.
So as of now, the boys are with their aunt and cousins having a blast, the girls still don’t have a discharge date, Cody’s running between class, house renovating and NICU, and I’m with the girls 24/7.
To Greg, Jared, Adam, Nathan, David and Christy, Tami and Bernie, Mike and Carolee, Devon and Kylie, Jim and Brenda, Mark and Kim, Jessica and Ryan, Haley and Tyler, Zack, Jack, Rachel, George and Jennifer, thank you so much for all your help with our house. I know you all had better things you could be doing but instead you came and helped us.
I would also like to say thank you to some special ladies (and Seth and Treacy):
Shanna, Annie, Robin, Lori, Charlene, Cassandra, Lisa, Seth and Megan, Liz, Connie, Anna, Elizabeth, Chelsea, Rona, Megan and Treacy, Natalie, Angie, Dawn, Mary and everyone we are forgetting.
We appreciate how you all stood up in prayer and then in action, representing the body of Christ. This real life illustration of love has been incredible to witness. We are very thankful.
Sincerely yours,
Cody and Rachael Prescott
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