Here is an update about our babies for everyone who has asked.
Thank you so much for asking and for continuing to pray for us.
Tom and I had a long, hard day at Johns Hopkins on Thursday but it was well worth it. The update is we got to meet with a chaplain and a neonatologist, who answered so many questions for both of us about what to expect for babies with limb body wall complex.
We take a selfie every appointment we go to together, which might be strange but it’s one way of documenting everything and each appointment is one step closer to meeting these precious babies.
Our prognosis is the same. The doctors expect both babies to pass soon after birth. We sat in a conference room and a doctor explained step by step how our babies will be born (via c-section) and how each of the expected limitations may complicate their survival. She started with breathing- each baby may have trouble breathing as soon as they are born. She detailed what the doctors will or will not do to assist them at each step.
It was strange because the conference room was so normal and our conversation was comfortable and yet sitting there all I could think is, this is the hardest thing we will ever do, this is the hardest thing we will ever do.
All of it- of course.
But we are doing it. By God’s grace we are doing it. We are able to fully accept what the doctor told us. God’s grace y’all. Any time you can use the term perinatal hospice and not be a complete mess- you know God’s got you. He gets all of the glory.
The doctor and chaplain were so kind, in a way that I’ve gotten used to and not even mad at. I wept as the neonatologist told me she is so sorry but I absolutely believe her when she told me she would do everything she can to help us.
I asked her how many people will be in the room when I delivered. She said, thirty.
Thirty people in the operating room. I was shocked.
I had joked with my OB that morning that I hoped whoever was doing my c-section knew what they were doing since things were “a little complicated”. Now the look she gave me makes total sense.
Thirty people are going to help us deliver these precious babies who are not expected to survive.
What I won’t say out loud during all of this but think of all the time is: are we doing everything we can. Should we go to a different hospital, get a second opinion, choose a different birth plan, google more, ask different questions. Definitely not google more.
I know God has the answers to the things we do not know and His ultimate plan is greater than ours. But these doctors, wow these doctors. They are so good to us.
So are all of you! Please keep our precious babies in your prayers. It’s the hardest thing we may ever walk through and we are doing it fully aware of God’s great love for us, the strength He gives us and all of your prayers.
Thanks you guys. Lots of love.
-Emily & Tom
When you have a high risk pregnancy like ours- carrying two babies with a fatal diagnosis, the idea of false hope is something other people think you should avoid. Just don’t have false hope they say.
But our hope is not false.
The first time I heard it, the person I was talking to sighed and said:
“I just hope you and Tom don’t have false hope” I just said “oh, no- we don’t…” and stumbled through the rest of my explanation.
I hung up and stared at the phone.
We do have hope. We have tremendous, peace-giving hope.
Until recently, I have only been talking about the hope I have for my babies with other christians.It’s way easier to talk about hope with people who know the hope you are talking about. Like friends from church or the group of moms I meet with for Mops. And of course with Tom. Definitely not our doctors. How sad to be seen as the parents with false hope.
But in real life, I am asked why I would carry babies with a fatal diagnosis- if that is a wise decision. In real life people don’t know the hope we have and they feel so sorry for us.
In the space in conversation that sometimes feels enormous, I don’t say anything about hope because I don’t want our hope to be perceived as false.
But our hope is not false.
Hope saved my soul when I was seventeen and Tom’s when he was five. Life transforming, soul saving, never-be-the-same hope.
The only thing crazier then worrying about being perceived as having false hope is the idea that our hope could ever be false. People who don’t know the hope we have, don’t know the hope we have.
They don’t know. Tom pointed out the other day as I was going on about people and this false hope thing. Oh man, he is right.
The hope we have for our babies is not because we are religious and follow a code that says don’t abort your babies no matter what. The hope we have is not because someone told us about Jesus or because we believe in acts of healing and soul saving that happened thousands of years ago. We believe in those for today. Right now. We have witnessed them. Actual healing and actual miracles. Our babies are not beyond that. God can. When Jesus saves your soul you are never without hope.
And even if God doesn’t, heaven is our hope.
Our hope is not false.
Thank you for continuing to pray for us. Along with the great peace God has afforded us we believe a covering of prayer is helping us see things we may otherwise not see about our babies and this pregnancy. Things we may otherwise become bitter to- like this idea of false hope. But we aren’t! We are so grateful to each of you who are praying with us and for us for our babies.
All that hope,
You guys are praying for us, like really praying for us and we can feel it.
We are so humbled by your prayers.
Thursday was our anatomy scan for our twins and even though we get ultrasounds every week, this was the big one where the doctors look at all their fingers and all of their toes- which they have!
Our doctors are still giving us the diagnosis of limb body wall complex (or something similar), which no baby has survived but we go to each appointment with an open mind that anything can happen.
I intentionally shared about the babies on facebook the day before thinking maybe some friends from church would pray with us.
Woah, you guys. Woah. I never thought so many people would respond. And you all are still praying! To be honest I was nervous about telling our story on facebook because so many people have questioned why we would keep this pregnancy if the babies have a fatal diagnosis.
The answer is, God is in control and He is good all of the time. Tom came home from work Wednesday night and I said, “Tom, people are praying, like really praying.” His response was what did you expect? I guess I don’t know.
Tom was able to go with me to the anatomy scan and I will always be thankful to his boss for that.
Truthfully, most of the time we have no idea what we are looking at on ultrasound. But it is precious time with the babies. Funny thing: at one point our ultrasound said, “well no hands then”, because one baby’s hands were in a little fist and she couldn’t quite see them. I didn’t even flinch, just thought- add it to the list, we will pray for hands. Limb body wall complex means abnormal findings like no hands, no legs. But then she said, “today”. Meaning baby A has hands but she just couldn’t see them ‘today’. I guess it’s not funny at all but it was to me. Our babies have both arms, both hands, both legs and both feet- that is amazing.
Another funny thing that is maybe not funny at all- we never got to talk to the doctors about the results of our anatomy scan.
The scan took two and a half hours. But I had another appointment to go to. I am pretty sure they still think both babies have limb body wall complex or the equivalent as our maternal fetal medicine told us- no change, one baby has fluid in the abdomen but it’s not concerning and one baby may have a cleft palate.
Still not sure if they will live. Still not sure if they will die.
And that was it. The appointment took all day. But we got to see our babies, we had lunch together (shout out to flamers chicken, our go to at Johns Hopkins’ cafeteria) and best of all we felt God’s grace all around us. All around us.
As I was jogging down the hall trying to find a bathroom, I saw a precious girl standing on her IV being pushed by her mom down the hall. She looked so sick. I stopped right there and felt the weight of it. All of this. What parents will do for their children, what doctors will do to for their patients. And I started praying for her, I said God, give her all of the prayers we are getting, give her all of the healing we are asking for. Give them to her and her mom. We even haven’t met our babies yet but that mom has a little girl alive and she is suffering- it was hard but as God stopped me, He reminded me, there is enough for her and me and the babies and all of us. Oh Jesus, there is enough for all of us.
God is so good you guys. We are thankful for our doctors, for being able to go to Johns Hopkins and for getting to see our sweet babies so often. And the power prayer is real. We are feeling it and witnessing to the truth that God hears our prayers.
Our hearts are forever changed,
Tom and Emily
There is something I’ve been meaning to tell you.
In January, Tom and I found out we are expecting another baby.
In February we found out we are expecting twins.
In March we found out our babies had several abnormalities and were deemed incompatible with life. Specifically, both of our twins have limb body wall complex.
Now it’s May and I am 21 weeks pregnant with these sweet babies.
At 12 weeks our ultrasound technician left the room quietly to get our doctor. I told Tom she looked upset. We already knew we were having twins, we already knew there was a chance they could be conjoined.
My OB sent us to a maternal fetal medicine doctor the same day. The doctor came in and the quietest voice, told us that our babies were incompatible with life. She listed off several abnormalities and showed us each one.
She explained that none of it added up to be any one defect or any one cause. She said they could also be conjoined at the liver, we just don’t know.
She asked if I had any questions. I looked at the screen, where I just saw two hearts beating and asked: “but they are still alive…so why are they still alive”?
She quietly said, “I don’t know”.
She got up to leave and told us to take as much time as we needed which sounded ridiculous.
Then, I looked at Tom and sobbed like I have never sobbed before. Good thing Tom was there to hold me because it was 20 minutes before I could walk again. As we cried, we both cried out to Jesus. The presence of the Holy Spirit became so thick in the room we could tangibly feel God all around us. We both walked out with a peace we still can’t explain. Except we can.
God goes before us, He is always with us, He never forsakes us. God was already there.
And the same God who I walked into that exam room with, is the same God I left with.
His promises are real. And even in this I have joy.
God is bigger than all of my fear.
Our faith tells us God can heal these babies completely. And we know they are already whole and complete in Jesus. No matter how long we have them, we are their parents- stewards of their souls. If we lose them, we know that Jesus conquered death. So we have no fear. We only have joy.
I plan to post about our journey. Even the hard parts. Already, I have gained so much from reading from other parents who faced a similar diagnosis. Already God has shown up for us in ways we can’t explain but will try to witness too.
Will you pray our sweet babies and for us- believe with us for a miracle and trust God to do a work in us either way? We so covet your prayers. Thank you sweet friends.
Cherishing all of your prayers and forever thankful for these babies,
Our Tommy-man is two years old.
And he is just so funny. Whoever calls twos terrible, well I just don’t know but it’s pretty terrific.
Two-year-old Tommy is a total goofball. Everything is funny, everything is fun except when he doesn’t get the snack he wants. Then maybe I do get it. #toddlerlife
Two Year Update
Really, Tommy is still sweet natured (just like his dad) but maybe a touch stubborn (like his mama) and now he comes up with the funniest things. Like how he saw the dog eating grass in the backyard and tells everyone Kiptyn eats poop and then laughs about it like it is the funniest thing he’s ever heard.
I love watching his imagination lately- it is out there (not the dog eating poop thing, that’s probably true).
Watching him grow into a two-year-old, he is more confident with most everything. He is not timid about anything and will let you know what he wants. Like cookies and donuts and playing outside.
Lately he has turned into a chatterbox, literally repeating everything we say. (Like that one time he told his dad to chill out.) His favorite word might be no, but I’ve heard it’s a toddler thing. He says a lot of other things the funniest being heavy- which he says with a weird accent- heeeavvvy. It’s the best.
He outgrew his dance to all rap music stage but I am sure it will come back right?
A big milestone for us is now at two he may have outgrown his dairy allergy. Hallelujah. Tommy had a whole piece of pizza the other day and did just fine so fingers crossed.
I just realized I have no idea how much he weighs or how tall he is so maybe I should get on that but he is in 3T clothes and I’ buying bigger shoes every week.
Here are some more of two year old Tommy’s favorite things.
favorite food : shrimp lo-mein (just like me)
favorite color : orange, he thinks everything is orange or pink
favorite book : Everyone Poops (I mean, it’s a classic so..)
favorite thing to do : be outside
favorite toy : toy shotgun
favorite sport : baseball
favorite tv show : PJ Masks on repeat (make it stop! jk)
favorite place : the farm
favorite animal : dogs
favorite dog : Ripken, his aunt Val’s yellow lab
loves : all things animals, balls and sports, guns
most used phrase : “what happened? or what is that?”
That’s all about Tommy for his two year update. I’ve got to say I love raising a two-year old. Especially this two-year old.
This blog! Oh man.
So what is new is, this whole time I’ve been juggling life and motherhood, I’ve been saying, “but I have a baby”, but the truth is I have a toddler now. He’s not a baby. He’s not a baby! Ok he is totally still a baby. Always will be. Sorry not sorry, Tommy man. You are stuck with me, and you’re always going to be my baby. #becauseIsaysSo
But what is new y’all. Besides everything. Ummmmm.
Just going to jump into it.
Tommy was a chicken for halloween. It was fantastic. Except I had a moment of chasing- chasing! him through the parking lot during Light the Night at our church when I realized I chase chickens all day at work, just to dress my kid up as a chicken and chase him for Halloween. What’s up with that?
It must mean something. It DOES mean I immediately went home to see where to buy one of those leashes for kids. For real. I’m that parent and it’s a good thing.
Speaking of chickens. Did you know ‘backyard chickens’ is like the number 5th thing searched for on google? That must mean something. What does it all mean?
That’s what’s really new, me asking myself ‘what does it all mean’ at least five to six times a day.
What I do know, is that motherhood is a stinking blast. Like who signed me up for this because I am having a blast. No joke.
Also new, did you know that you can now order McDonalds from a machine, just like at Sheets? Whhhhattttt.
What is this? And did you know you can get diapers delivered to your door? From amazon?
What is this America that we live in? God is good!
Speaking of, you guys God has shown up for me BIG time lately. I have gotten back into seeking Him every day by setting apart time for prayer, and listening to what He wants to tell and show me. I also realized how much NEGATIVE talk I’ve had in my life and just a shift to speaking POSITIVE things over myself and situations, wow you guys. WHAT. A. DIFFERENCE.
Just can’t even. Explain. But try it.
Hope all is well with my loyal blog readers. Are there any of you? Y’all are the bomb.com