Bringing Jackson Home
Jackson was born on September 28th to two parents who could not be more expectant for his arrival. We have waited for him eagerly and prayed for him constantly. Prayed, specically, because we knew Jack would have some challenges if God did not intervene. At our twenty week ultrasound, we learned that Jackson had what was thought to be a severe facial cleft that caused his right eye not to form. Several weeks later, at a fetal MRI, we were told his right ear had not formed as well. They were watching his chin, because it seemed a bit small, but this was only to be a precaution.
Then, Jack was born, and what was assumed to be a facial cleft appears to really be a craniofacial microsomia. This means that Jack's right side of his face is smaller and underdevloped when compared to the left. This is what caused the eye not to form and the ear to be displaced. Worryingly, this also caused his lower jaw on the right side to not form properly, which creates difficultly when breathing and complicates his ability to swallow.
From the beginning, we have been ready to receive Jack with whatever he had or needed help with. (Read about that on Preston's blog or Hilary's .) At the same time, we felt compelled to pray that God would bring about a miraculous healing. (Preston's words on this, Hilary's .) We still feel compelled to pray for that, because even when it seems impossible, nothing is too wonderful for God. At the same time, we have to make plans, trust that there is a faithfulness to preparing with the information we have been given, and knowing that God can still come into the midst of it and surprise us all.
A craniofacial microsomia is a lot more complicated than what was first supposed to be a complex cleft. Jackson will need a feeding tube and a trachestomy, which are expensive procedures and needs on top of what is already a long NICU stay.
We want to bring Jack home. We want to bring him home and hold him and remind him of all of you who have prayed and watched and waited and who now keep the vigil with us.
Would you help?
Love, and thanksgiving,
Preston and Hilary
Who are Preston and Hilry? ...
Hilary is a second year PhD student in philosophy at Baylor Univeristy. Most importantly, she is Jackson's mom.
Preston is an author and the process of becoming a priest in the Anglican tradition. Most importantly, he is Jackson's dad.
For Jacks, a reminder ...
Dad wrote this to you , Jacks, months ago. It's still true. Even as we ask for help, it's sitll true:
"Jackson, I want you to know something. I want you to know that we'll keep praying for your healing until Jesus says stop, but your mom and I don't attach healing to how you look. What we want for your life is for you to be whole in the sight of God. We don't know what that means. We don't know if that means by miracle you'll have both eyes and no gap in your face, if that means you'll have both eyes and a gap they heal through surgery, or a glass eye, a surgically healed gap. Or maybe this other thing. Or that other thing. We don't know. We're not scared of that. Regardless of what happens, regardless of what miracles are still yet to come, you were healed by Jesus, you were made to be able to breathe. Can I tell you how that's enough? Can I tell you how much that already is?
We have just over three months until you're born. We've spent a lot of these past months trying to talk as openly as possible about you to help other people get a sense of the language we want to use. Most people, almost all people, want to say the right thing and are so afraid they won't. (It's those people, as it happens, who usually say the right thing because they bothered to wonder that in the first place. It's a sign of moral character. It's the people who quickly tweet you a photo of the 'kid who had the same thing' so 'feel better' that should ... pause before proceeding.) People want to know how to pray, they want to know what they can do. We tell them to both pray for your miraculous healing and pray for you to be whole in God's sight. How we read it, no matter what happens with your face, both of those prayers have been and are being answered.
Jack, well-meaning people are going to say some silly things in your life. They're going to read healing passages in the New Testament and assume that physical healing is superior, is the sign of something exclusive and the property of God. Be kind to these people. Help them read slowly. Help them see how often Jesus only heals when he is asked to. Help them see how what Jesus heals people of is often culturally damaging, not personally. It's really hard to live in the ancient world if you're blind. It doesn't have to be so today. We live in a world that caters to able bodies and defines those able bodies very narrowly. But we don't notice because we assume our own experience is the normal one. So people may say things about how you still need healing if you don't have that eye, or if you need surgery to help finish forming your face. But you can remind them, gentle as you can because sometimes it will be hard to be gentle, that Jesus has already made you whole. You're like Violet, Jackson, no matter what is happening with you physically, God already sees you wholly, as you are. Your mom and I look at 3D ultrasound images, Jack, and we see the same."
Why we need help ...
NICU costs are expensive. We're easily going to have two to three weeks in the NICU alone, not to mention the possibilities of surgeries, therapies, and many years to come of appointments and coordinating medical teams.
While we continue to pray that God will do miraculous things, even beyond the miracle Jack already is, there will be high costs to his first several weeks of life regardless.
Trachestomy requires a great deal of care, including at home nursing, which our primary insurance will not cover much of. We're in the process of applying for Medicaid, but may make just a bit too much for it. We'll still need help.
With student loans, limited funds from our jobs, and being rather young in the midst of saving for our future, we are in need of help. We are not proud people, but we are devoted people. We wouldn't ask unless it was necessary to do so, and there aren't other viable options.
We need financial help. It's that simple.
Our promise to you ...
This donation is an investment in Jack's future and we respect it as such. We're still figuring out how much of his life we'll ever share online. Beyond these first weeks of reaching out to our large communities of digital friends for support, we'll want to protect him as much as possible from having his story told on his behalf. So while we might not post as publically or as frequently in the future—because, God willing, the days are normal and boring and without much to report!—we'll keep you updated by an infrequent email newsletter about Jack's progress, upcoming surgeries, and how you can pray for him in the months to come before the next update.
Learn more ...
You can read more of Jack's story and how we prayed, believed, and trusted on our blogs. Preston's and Hilary's .
Please remember ...
GoFundMe takes 5% and an additional 3% in processing fees from your donations. That's 8% total. They're the most competive rate for individuals, but this means if you give $10, Jackson only receives $9.20. That adds up over time. If you are able to adjust within your donation, that's there for your consideration.
You have been so generous to us these past months. Your support of Jack and his needs were mercies we can't begin to know how to thank you for. Many of you know that Jack thrives. We had extraordinary news a few weeks ago—Jack will likely be able to take the trach out in April. There's still so much to do and be done, there's still many procedures, bills, and battles ahead, but the goodness of this life of ours, this life that Jack makes and is making for and with us, is extraordinary.
Jack getting his trach out will mean that we will also likely lose Medicaid, which Jack gets through a special provision because he has a trach and a g-button. We have been blessed, in no small way, by support like yours that has meant this transition is not as daunting as it could be. But for many of Jack's friends from the NICU and beyond, this would not be an easy transition.
If you are able and of the mind to do so, please call your representatives and encourage them to keep kids like Jack in mind when they make decisions about the healthcare available in our country. Please remind them to prioritize their needs. Please be once more an advocate for Jack by being an advocate for those like him who don't always have access to such generous support.
It's with the greatest of thanks for all you have done we ask this, because you care about kids like Jack. Thank you. Thank you. Again, thank you. You have been a friend on this journey.
First, foremost, our deepest thanks. Your support has literally made a world of difference for Jack’s care and our ability to care for him. I apologize for not posting an update sooner, but the transition home, multiple follow up visits, and securing nursing has been a work in and of itself, atop all the work we still have to do. Again, your support made so much of this transition easier, gave us time and space and resources, and we are overwhelmed, simply. Words feel cheap. You have created pathways where none seemed to be. Thank you.
---How He’s Doing---
Jack is thriving. He loves being home and being with just us. We spend mornings playing, discovering how many things it’s possible to poop on, how many things can fit in our mouth, and generally being awesome.
Here’s what you need to know about Jack: he loves exploring the world. We don’t know what he’ll be or do—we’re pulling for STEM because we’re so humanities heavy, but whatever—but we can already see how much will and life and curiosity he has. And that’s about all we can see because he’s only three months old. All the parenting blogs can calm right down.
Currently, his favorite things to stare at our a brightly colored fox that rattles and a ball of foil I rolled up today and put in front of him.
Let’s talk about the medical side of things.
As I mentioned, we’ve had a lot of follow up appointments and consultations. We are finally in a rhythm of only driving to Temple once a week to adjust the NAM device that Jack wears in preparation for his cleft surgeries. So let’s start there.
Jack’s cleft is shrinking week to week and, significantly, the gap in his lip is also shrinking thanks to some aggressive taping by his father. All of this will make for a much easier surgery both constructively and cosmetically. Our plastic surgeon plans to close Jack’s lip at the end of February, beginning of March and then close the palate around three months later. The lip surgery will be out-patient, a great relief to our family.
Related to the lip and palate, Jack had a swallow study a few weeks ago. The extraordinary news is that he has all the right swallowing and sucking reflexes. The hurry up and wait news is that his neck is so small (because he’s a baby, they have this problem often we’re told) they can’t be 100% sure that he’s swallowing perfectly to sign off on bottle or breast feeds. So, for now, we’re giving him under 5ml in drops with a pacifier in his mouth to keep him used to associating being made full by the g-tube with the work of eating. The swallow team, however, is very confident that after his lip surgery he’ll be ready to bottle feed. We’ll repeat the study to be sure, but they are very confident.
Jack also has total hearing. Perfect hearing in the left and, with a little device called a Baha, perfect hearing in the right. All his internal ear structures our present, just the outside opening is absent. No small thing! Cleft kids can have lots of hearing difficulties, so this is a huge gift.
Jack does have a small ASD in his heart they will watch closely over the next year. Our cardiologist believes there’s an 80% chance it will close on its own and that even if it doesn’t, the work to mend it will be pretty simple. In a way, it’s actually a blessing. Right now, it’s not harming Jack at all but it does mean he qualifies for insurance to pay for a very expensive, monthly vaccine he’s supposed to get between November and February for RSV. Kids with trachs have a really hard time if they get RSV and there’s nothing to be done once you have it other than to wait it out. The shot costs $2000 every month if your insurance doesn’t pay. Right now, we’re trying to work the heart angle to get the RSV shot covered so we’re not out of pocket that.
As many of you know, no matter how stable Jack is, he does have to be watched because of his tracheostomy. We’ve had a private nurse in our home overnight for the past month, except on Sundays when they were unable to find someone. Now, the good: we have them work a 10PM-8AM shift most nights and a 7PM-7AM some nights. What this means? Well, he’s already asleep when we hand him over and all the work the night nurse does is change him, do his feeds, and make sure he doesn’t stop breathing. And on the 7PM shifts, we get the chance to go out sometimes and still go on dates. (What new parents get to do that?)
What this also means, and I’m sorry to have to say this, is that our nurse does not “live with us” and does not “parent for us”, two comments I have heard that are both offensive and inaccurate. Just keep that in mind when you talk to us. We’re still Jack’s parents and we often have to teach nurses how to do what he needs. They don’t change his trach, check the fluid in his gbutton, or a list of technical skills 43 days in the NICU teaches you.
Some sad news on this front is that our nurse we had enjoyed for a month Hilary caught sleeping, twice, on her shift. She was our only nurse, but this is unacceptable. We’ve fired her and the agency has helped us transition to an agency that has more nurses who might want to work nights. (Apparently, most work days because parents can’t be with their children then or sleep then. Jack’s most fun when he’s awake and, again, we’re still his parents, so night coverage so we can sleep is all we need.) This means we’re nurse-less right now. I stay up until 3AM with Jack, Hilary goes to sleep at 9PM, and then we switch: I sleep until 9AM, she takes a morning nap, and we share the afternoon.
The agency hopes to have someone within a week, but it might be longer. Pray for us in this, it’s really frustrating. And it’s frustrating that people either think Jack is so fragile he can’t do anything or that he’s so stable we don’t need this help. Not exactly. You need to know what to do if he gets something in his trach, if he pulls his gtube out (he has done this), or a whole host of things.
(Can you tell I’m both tired and remain incredibly frustrated with people who imply having a nurse is infringing on our ability to parent? I have no time for that.)
In all this, our family wishes you the happiest of holidays and particularly a merry Christmas. We are grateful for you, for your support, for your prayers. Pray for us over the holidays as we in turn pray for you. And please use the messaging function on this page to send us your address if you’d like a Christmas card with our thanks. We’d love to send it to you.
In January, I’ll post another update with a link to an email list that you can join to be kept in the loop about Jack. Updates will be about every three months, or a bit less.
From all of us, a blessed holiday to you,
Preston, Hilary, and Jack
Some deep, extraordinary, good news:
Jacks is already tolerating feeds through the gtube so well, they think he might be back to full feeds and off IVs later this evening, or very soon.
He is already down to the lowest settings on his ventilator and they're testing to see if they can go ahead and remove him from it. (This would be a few days ahead of schedule.)
His plastic surgeons think he's going to be a good candidate for the NAM device, which is a device that will help prepare him for a cleft lip and palate surgery, which would be done at the same time, instead of one at three once and one at a year. It reduces the severity of the surgery, helps the healing process, and helps the face grow toward the direction that surgery will help complete. (It's complicated, but this means less surgeries, a sooner surgery, and a more successful reconstruction in the long run.)
We'll be here in the NICU for about another three weeks and are still figuring out things with insurance and assistance programs. For those who have asked, Jack's tracheostomy will require us to supervise him 24/7, so we're also having to get a nurse who will be with him overnight when we can't watch him. This is why things are a jumble with insurance. (Ours is very good, but only gives him about 4 hours of nursing coverage a day. Ideally, we need 12.) We're so grateful for the teams we're working with here and remain grateful to you for financial support, which, in part, is helping us get the nursing issue sorted out.
The Lord has been so generous to us with all the people who are working with Jack. Thank you, always, for your prayers.
(Tonight, while Jack sleeps and rests, we're going on a date. Which we'll probably cut short to go check on him, but, hey, NICU childcare really can't be beat.)
I would do anything to help you Hilary, Preston and Jack, may you all have a fantastic Holiday, and I'll be praying for sleep for you two,, stable health for Jack and a Mary Poppins of a Nurse for all three!