Test run

In writing this I’m hoping to help keep you all informed to the best I can, but I also use this space to help myself process. Because of that there are details that may be hard but honest. Thank you for following along despite the sometimes uncomfortable reality of our story.

Early Monday morning, June 4, we decided to go ahead and do a test run for L&D. Kidding. Sort of. I started having contractions around 2:30 in the morning. As I laid in bed I noticed they were sharp and my belly kept getting very tight. Because I was induced with Ira I have not experienced contractions outside of Braxton Hicks (which had been increasing in frequency the past couple of weeks) that weren’t brought on by pitocin. I knew that more than five contractions in an hour meant I was supposed to call my doctor. So after feeling several I decided to download a tracking app and start making sure I was actually having contractions, not just making it up in my mind. They continued to come and after about 15 within the first hour I woke up Cooper, who had only been home and asleep for 3 hours after working all weekend long out of town. He sweetly asked, “Should we be concerned?” To which I jokingly replied, “well I did wake you up for them…” 😉 He told me to call my doctor so I got up to find the number. Then instead of calling, I came back to bed to try and see if they’d go away. 🙃 I’m not stubborn or a procrastinator at all.

After several more I decided to call the doctor, who wanted me to come in immediately and be monitored. We called our family and started texting our prayer warriors to have them pray for us. Off we headed to Medical City in Dallas. We honestly had already mostly decided we were going to deliver in Fort Worth but because my appointment with who would be our new OB wasn’t until the following day, we went to Medical City where they knew us and us them. We were so well cared for by all the staff while we were there. It made us seriously reconsider our decision.

God was already answering prayers as my contractions began tapering on the drive to Dallas. We showed up, got put in a room and began being monitored.

At some point the nurse came in and explained that Ellis’ heart rate had dipped some and they wanted to watch it. He wasn’t in “fetal distress” yet but they did not like what they saw. She began asking questions about if we’d want an emergency c-section if he entered into fetal distress or to just labor regularly. Because of his diagnosis these are questions we are faced with. He doesn’t have a good life-expectancy. In fact, statistics say if he makes it to labor, he probably won’t make it through it. Our goal has always been to get him in our arms alive, but some families just want to labor regularly and let whatever happens happens. We know we want a c-section if it means he gets here alive, but because I am on blood thinners for a clotting disorder, an emergency c-section would likely mean putting me under with general anesthesia (if my platelet count wasn’t right for an epidural or spinal, or we just didn’t have time for those things). If I am put completely under and our boy arrives, knowing we have very limited time with him, I may miss every moment with him. I panicked. And our nurse (who we later found out is a member at our church – another way God is working in amazing ways to surround us with who we need when we need them), gently calmed me down. The doctor came in and checked me, and because labor didn’t seem to be progressing we were able to go ahead and run labs to see where my platelets were at – I had missed my dose of blood thinners the night before so I might be sitting okay to receive an epidural if labor progressed. It’s in these moments where we have to fully trust God’s sovereignty over our entire situation, over Ellis’ life, and our own. We trust and believe He already knows exactly what it will look like when Ellis arrives and that whatever that is, it is better than our own plans. In the moment it’s hard to not want to try and control whatever we can, so we find ourselves constantly having heart-checks and falling on our faces before the Lord pleading “Your will, not ours be done”. Holding Ellis’ life in open hands has been really hard, but really worth it.

[A dear friend wrote an incredible article on God’s sovereignty over illness and suffering that you can find here. I definitely recommend giving it a read!]

Contractions continued to taper and get more random and further apart. My body was chilling out and Ellis’ heart steadied. They monitored us for another 4-5 hours and when labor did not progress and Ellis showed himself to be the fighter he is, we were released to go home. Our God is so good.

Tuesday morning we had appointments all day in Ft. Worth. These appointments would be our deciding factor (finally!) for where we wanted to deliver. We met with the general surgeon and neonatologist in the morning. The general surgeon will perform Ellis’ congenital diaphragmatic hernia repair. We really liked him and felt peace about Ellis being in his care. The neonatologist sat in on the meeting with us and then we continued after to talk about general care when Ellis arrived. We felt so understood, heard, and genuinely cared for by her during our meeting. She was fantastic and exactly what we felt we needed to go ahead and decide to have Ellis in her and her team’s care. Such a relief to finally know where we will deliver and where Ellis will be! So many answered prayers.

We then had a sonogram and appointment with the high risk OB/MFM that would be taking over my care. Ellis looked great on the sonogram. He is still very small, which is expected. They measured him at 2 pounds 8 ounces, a little less than my last appointment with my other MFM but sonos can vary depending on machines and the person doing it. Also third trimester weight checks can just be very inconsistent. We’re not too worried about it. Due to our scare on Monday we decided to go ahead and do a round of steroid shots to hopefully help Ellis’ lungs develop better in case we end up in labor before term. There’s a very high chance of that happening and due to his already small size and his CDH, we want to give his lungs the best shot we can. Our goal is to get to 37 weeks and if Ellis is still strong we’ll try to get to 38 weeks for inducing. We are having weekly and possibly twice-weekly sonograms to keep an eye on him and since our goal is to get him here alive, if he is showing signs of struggling we will induce and take him early. Stillborn rates go back up now due to his diagnosis and we are trying to avoid that very possible reality if we can.

We would love your continued prayers for our family. On days we don’t have the words we find comfort knowing that our fellow brothers and sisters are pleading with the Lord on our behalf. Thank you for that.

Would you continue to pray for:

-Healing over Ellis, and that he would continue to grow and develop;

-that we would make it to full term before needing to deliver (at least 37 weeks);

-for mine and Cooper’s hearts as we near meeting our precious boy, that we would find complete comfort in God’s sovereignty;

-that God would strengthen us for the days ahead and we would praise His name no matter the outcome, He is worthy of our praise!

For I know that the Lord is great, and that our Lord is above all gods. Whatever the Lord pleases, he does, in heaven and on earth, in the seas and all deeps.‭‭ Psalms‬ ‭135:5-6‬

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31 week update

Hi sweet friends and family. I just wanted to give a quick update as to where we’re at and what’s going on with Ellis. We haven’t had any “new” findings at any appointments which is great news! Ellis is continuing to grow on his own little scale, answered prayers! He is a tiny guy, non-existent on the percentiles, but he hasn’t stopped growing yet. We’re hopeful and praying that he would make it to 4 pounds by delivery time.

His VSD is continuing to be very small, even possibly closing some on its own – our God is good! And they are not sure if he has a coarctation after his last echo showing a good-sized aortic valve. 🙌🏻 We’re still praying for these things to be completely healed or very minor.

We have been torn on where we want to deliver our sweet man. We have been meeting with doctors, surgeons and neonatologists, and taking tours, in Dallas and Fort Worth. We feel we’ve finally found some clarity but are waiting on some final appointments before we completely dive in with that decision. We’re feeling peace about what our plan is at this point though which is a great feeling and another answered prayer. We know Ellis will be immediately put in the NICU due to his CDH so we are finding ourselves very picky about the NICU setup 😉. We of course want the best care for Ellis wherever he is so that is our top priority.

We also now know that we are looking at surgery to correct his CDH as soon as he is stabilized after birth (a couple days after to about a week). He will not have to be rushed off to surgery immediately but it will still happen quickly in his life.

We have so many appointments these days and are only seven weeks at most from meeting our precious son. We’re grateful we are still in the fight and have appointments to go to. We are grateful for his life and how God has used it in so many ways to do a work in our hearts and others. We are grateful for our community of friends and family that have loved us well and prayed for us and Ellis. We couldn’t do this without you. We would love your continued prayers for:

  • Continued healing and growth for Ellis;
  • Us as we make our final decisions regarding where to deliver;
  • That we would be surrounded by doctors, nurses, and surgeons that love the Lord and value life to the highest degree, and for those that don’t, that we would be a witness to them
  • That we would continue to trust the Lord in the days to come and praise His name no matter the outcome, He is worthy of our praise!

This I declare about the Lord: He alone is my refuge, my place of safety; he is my God, and I trust him. Psalm 91:2

Update 5/6/18

This past week we had three appointments to check up on our sweet Ellis. Let me just start by saying what a grace modern medicine and technology is. And that’s coming from a very oily, natural if I can, momma ;). Technology is so cool, and I’m thankful the Lord has given us the luxury to live in a place where we can so closely monitor our baby while he’s still growing in my belly! So cool.

Wednesday was our MRI to find out the status of his CDH – congenital diaphragmatic hernia, and take a look at his brain that is showing a bit of underdevelopment. The results were read to us after the MRI and their findings were a “minor” CDH (though I’m learning minor still means major in the grand scheme of some of this stuff. CDH’s are very serious, but still this is an answered prayer), with his lungs seeming to be at a capacity that would allow Ellis to breathe outside of the womb. This is huge. CDH’s are a serious condition because when the intestines move into the chest, they take up the space that would allow for the lungs to develop. Ellis’ heart is also not looking too constrained even though it has been pushed over in his chest. Another answered prayer!

His brain showed what they call a vermian hypoplasia which is an under development of his cerebellum. The range that they use to determine where on the scale of major-minor this falls is if it is more than 4mm underdeveloped, it would be more of a major issue. Ellis’ was 5mm underdeveloped so this falls in that major part of the range. But, our MFM did not seem as doomsday as the radiologist about this finding. We know that Trisomy babies have severe developmental delays and this is just consistent with that characteristic of a Trisomy baby.

Thursday we got to see our sweet boy via sonogram. I just love these days even when I’m tired from appointments. Seeing him move around and seeing his sweet profile is just the best gift. We talked some to our doctor about the MRI’s findings and she was very encouraged about how minor the CDH appears to be and how good his lungs look. I already mentioned that she was not as doomsday about his brain. She has a way of informing us of his condition but not being so clinical and cold about it. She just continues to communicate how she’s on our team and her number one goal is to get Ellis here alive and in our arms. She is kind and gentle and confident and we are just really loving being in her care.

Friday we headed to Cook Children’s to do a fetal echo with their cardiology department. We’re still trying to decide where we want to deliver so this was an opportunity for us to meet their team, tour their NICU, and tour Harris Methodists’ L&D (the hospital I would deliver at, which is connected by a bridge to Cooks). We had nothing but good experiences here. The cardiologists findings were consistent with our other cardiologist. Only a minor VSD and a possible coarctation of the aortic valve. We will not know the severity of the coarctation until after Ellis arrives due to the way newborn’s hearts change after birth, but the cardiologist said she would be shocked if it is anything more than minor based on what she is seeing right now. This is all great news regarding his heart! She does not think either condition would be major enough to require surgery, possibly ever. She assured us she was not looking at him as a Trisomy baby but only one with this heart condition. She told us that if his coarctation was more severe than it appears it will be, we would look at surgery between 4-6 months, and they would be on board to do it. We’re going to go ahead and meet with the heart surgeon there in the near future just to get an idea of how we feel about him. We know he has done other Trisomy 18 baby’s surgeries and he comes highly recommended from those families. We were so encouraged with our time spent with this cardiologist. Knowing we are trying to make some decisions about where to deliver, she immediately called other departments at Cook’s to get meetings and appointments set up for us – the general surgeon for his CDH surgery (which will be the most time-pressing issue after birth due to his heart conditions not being so severe), the neonatal group, and the high risk OB group at Harris. This was not at all expected or required of her to get things moving for us but she did it anyways without us even asking. We felt genuinely cared for by every staff member at Cook Children’s. We also toured their NICU and Harris’ labor and deliver floor. It was a good but long day.

Even after what feels like great news and good appointments, Saturday was a hard day for me emotionally. I guess after three days in a row of hearing how sick our baby is and being reminded his life expectancy, I was just sad. Everything made me want to cry. At one point I just laid on our couch and couldn’t even get myself to get up. I felt crushed. We cancelled our plans for the evening and headed to church where I spent much of the time with tears down my cheeks. The Lord continues to meet me where I am – even when I feel He is not good and not faithful. I know those things are true about Him (that His is good and is faithful) but sometimes my heart has a hard time matching my head. I just prayed He would make me believe. “I believe, help my unbelief.” (Mark 9:24)

Through worship, sermons, and prayer this weekend, He is working on my heart in ways I didn’t see coming. Once a month our church holds Elder-Led Prayer, which is just a time for the church to come together to worship and pray. On our way home from it today Cooper just reminded me what God has already done through Ellis’ life in our lives, and it reminded me of His faithfulness to us. He always has been faithful and He continues to be so. I’m eager to see how the Lord continues to use Ellis as He shapes our lives and our hearts to know Him better. He is a good, good Father.

This whole thing has been what I can only describe as a roller coaster ride. And as we near the end (only 9.5 weeks at the most from meeting our baby boy) it’s getting harder and more emotional for us. It’s scary knowing the amount of possibilities of what could be wrong and knowing that there’s so many things we just won’t even know until he gets here. But, we are holding Ellis’ life with open hands, knowing all things are His and we are just honored and blessed to steward this little life for whatever time He allows.

You are worthy of it all

You are worthy of it all

For from You are all things

And to You are all things

You deserve the glory!

For from him and through him and to him are all things. To him be glory forever. Amen.

Romans 11:36

We would love if you would continue to pray for healing over Ellis, for us as we decide where to deliver, for our hearts as we near the end of this pregnancy, that God would strengthen us for whatever He has planned for us and we would praise His name no matter the outcome. He is worthy of our praise.

Even if

Shortly after Ellis’ diagnosis I was listening to my regular station on Alexa as I cleaned the house, when a song came on that hit me in the gut, leaving me in tears. I had never heard it before, though it was released over a year ago.

“I know You’re able and I know You can
Save through the fire with Your mighty hand
But even if You don’t
My hope is You alone
I know the sorrow, and I know the hurt
Would all go away if You’d just say the word
But even if You don’t
My hope is You alone”

It’s like God held onto it for when we needed it most. This song has become our sort of mantra in our home since then. The lyrics are exactly what our prayers were and continue to be, even more so as things seem trickier and more complicated to us. This song continues to renew our hearts when we need it, give us time to grieve when we need it, and remind us of our hope when we need it.

The full lyrics and link to the song are below.

Even If MercyMe

Lyrics – Even If by MercyMe

They say sometimes you win some
Sometimes you lose some
And right now, right now I’m losing bad

I’ve stood on this stage night after night
Reminding the broken it’ll be alright
But right now, oh right now I just can’t

It’s easy to sing
When there’s nothing to bring me down
But what will I say
When I’m held to the flame
Like I am right now

I know You’re able and I know You can
Save through the fire with Your mighty hand
But even if You don’t
My hope is You alone

They say it only takes a little faith
To move a mountain
Well good thing
A little faith is all I have, right now
But God, when You choose
To leave mountains unmovable
Oh give me the strength to be able to sing
It is well with my soul

I know You’re able and I know You can
Save through the fire with Your mighty hand
But even if You don’t
My hope is You alone
I know the sorrow, and I know the hurt
Would all go away if You’d just say the word
But even if You don’t
My hope is You alone

You’ve been faithful, You’ve been good
All of my days
Jesus, I will cling to You
Come what may
‘Cause I know You’re able
I know You can

I know You’re able and I know You can
Save through the fire with Your mighty hand
But even if You don’t
My hope is You alone
I know the sorrow, I know the hurt
Would all go away if You’d just say the word
But even if You don’t
My hope is You alone

It is well with my soul
It is well, it is well with my soul

We don’t have more of an update as of today. Next week is a full week of appointments though and we should have a good update to provide by Friday. We have an MRI on Wednesday, an appointment and sonogram with our MFM on Thursday, and another fetal echo with Cook Children’s cardiology on Friday. We would love if you prayed for these appointments with us, as well as continue to pray for the following:

-complete healing;
-time on earth with him;
-that God would strengthen and equip us for the days ahead, we would boldly pray, “Your Kingdom come, Your will be done”, and that we would praise Him no matter the outcome

When the cares of my heart are many, your consolations cheer my soul. Psalms‬ ‭94‬:‭19

But the Lord has become my stronghold, and my God the rock of my refuge. Psalms‬ ‭94‬:‭22‬

He will swallow up death forever; and the Lord God will wipe away tears from all faces, and the reproach of his people he will take away from all the earth, for the Lord has spoken. Isaiah‬ ‭25‬:‭8‬

We love you.

The Bailey’s

“Even more complicated”

Monday morning I had a follow up sonogram with our MFM after the cardiologists findings of a possible congenital diaphragmatic hernia. She was able to confirm these findings and unfortunately our sweet Ellis does in fact have a CDH. The hole allows the contents of the abdomen (stomach, intestine, liver, spleen, and kidneys) to go up into the fetal chest. The herniation of these abdominal organs into the chest occupies that space and prevents the lungs from growing to normal size. The growth of both lungs can be affected. The result of this is called pulmonary hypoplasia. On a sonogram Ellis’ appears to be small, with only his stomach up in his chest cavity. But because it’s hard to tell for sure on a sonogram, I am being sent for a fetal MRI to confirm the severity.

In Ellis’ case, this diagnosis makes things “even more complicated” as our MFM put it. We didn’t want any additional problems added to Ellis’ plate. We are limited where we can deliver now as he has to be delivered at a hospital with ECMO (though where we were looking at delivering already fits this category).

Surgery is necessary no matter the severity level in order to fix the CDH.

Because of this additional diagnosis, the chances of him being born stillborn increases even more, the chances of preterm labor increases, and his life-expectancy decreases. These are all hard things to swallow as we want the best for our baby and the most time possible with him.

Would you pray for us? We are still praying for a miraculous healing. We know our God is able. We are afflicted, but not crushed. Perplexed, but not driven to despair. Struck down, but not destroyed. God has given Cooper and I both strength we do not understand. All we know is it is not our own. We trust Him with this gift he has graciously given us, no matter the outcome. What a joy it already is to be Ellis’ parents.

“But we have this treasure in jars of clay, to show that the surpassing power belongs to God and not to us. We are afflicted in every way, but not crushed; perplexed, but not driven to despair; persecuted, but not forsaken; struck down, but not destroyed;”

2 Corinthians 4:7-9

“So there is joy in affliction. But the joy comes because of the hope that affliction itself is helping to secure and increase.” (Romans 5:3-4) – John Piper, Desiring God

“Not only that, but we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope,”

Romans 5:3-4

Our hope is not in the healing of Ellis, but the healer of Ellis. More of Jesus is what we desire and need, and more of Jesus is what we are getting.

Cardiology follow-up

Friday we had another fetal echo as a follow up with our cardiologist. They were able to see his VSD and it looked about the same – a minor or moderate VSD. This alone is not a very life-threatening diagnosis. We can rejoice over this news! His VSD has not grown, an answered prayer. After meeting with the surgeon he said that this alone may never require surgery. And he said he would very much expect this to fix itself within the first couple of years on any child, Trisomy 18 or not.

The cardiologist did see some things though that have them a little concerned and I’ll just list those out with the best explanation I am able to understand at this time.

They saw what seemed to be the right side of his heart a little bigger than the left. This would be caused by a possible coarctation of the aortic valve. This has several different severity-level possibilities, all needing immediate surgery for survival.

They also noticed his heart seemed to be pushed to the right side of his chest, causing some blockages to his valves due to the restriction it has on it. This was seen at times but in some views it looked normal.

They also noticed several times during the sonogram that Ellis’ heart rate would significantly drop, then raise back up to a normal level. They said this could be nothing, or it could be a sign that his body is not doing well with everything it has going on.

The cardiologist is going to watch these things and we will have to see how they develop with follow up echos. We go back to see them again in four weeks.

Something else they noticed, semi-unrelated to his heart condition(s) is a possible congenital diaphragmatic hernia. When they saw his heart pushed to the right side of his chest they noticed his stomach was right next to it, meaning it was too high in his body and possibly pushing the heart to the right side of his body. I am following up with my MFM first thing Monday morning to confirm or deny this, but this could severely affect the development of his lungs if we find it to be accurate. That’s all I know about it so far as the MFM is the expert in this area.

All of this was pretty shocking and hit me pretty hard. This is a heck of a rollercoaster ride but I’m certain our God is not shocked by this news at all. In fact, He is still continuing to knit our Ellis together and His plan is still greater than ours. He has us, He has Ellis, and He knows every detail of his body even better than the doctors. That gives me peace when I tend to lean toward being scared.

We’re praying that God would right now heal these findings in Ellis. That Monday morning the MFM would confidently find nothing that makes her think he has a congenital diaphragmatic hernia. That in four weeks his heart would look perfectly healthy, or just still show a slight, non-life-threatening VSD and no other issues. And of course that no matter how these appointments go, we would trust Him and find comfort in His sovereignty.

We would love if you joined us in prayer for these things. Love you all.

24 week sonogram

Ellis update!

Today we had another sonogram with our MFM. We’re 24+ weeks now which is a milestone I’ve had in my head anxious to get to. Our sonogram went really well! Ellis has grown and is now 1 lb 2 ounces! He is continuing to grow along his own little trajectory. An answered prayer! His digestive system is looking really well – he had something in his belly and had the right amount of fluid around him which shows her that he is swallowing and it’s moving through as it should. Another answered prayer! You guys, is our God so good or what? She said there is nothing new or worse going on that she can see. His brain still looks incredible, she isn’t seeing any cleft, and his other organs seem to be great. His hands, small size, and his VSD in his heart are the three signs still telling her Trisomy 18, but we are just feeling so encouraged and so blessed.

On Friday we have another fetal echo to check on how his heart is doing and after that we have a consult with the heart surgeon at Medical City. We know it’s unlikely he will take Ellis’ case if we get to the point of needing surgery, because he’s never taken a Trisomy 18 case before, but who knows what God is up to doing in his heart! We’re hoping we can share our story and hope in a way that might change and soften his heart. Even if not for us, maybe for someone that comes behind us.

We also had our original echo sent to Cook Children’s cardiologists to look at and see if they would be willing to do surgery and the surgeon there is already on board after looking at his echo, which is so so great! We have an appointment with them next week.

We’re finding it a little hard to figure out how to prepare for his arrival (such as, do we buy normal items like diapers? Do we prepare for a couple day hospital stay, or months long one?) due to the amount of different situations possible but we’re trying to trust the Lord in even those small details. We don’t have to have it all perfect, though sometimes we (me, Jordon, really) feel the need to control those little details.

Would you continue to pray with us for:

  • healing over Ellis’ little body, that he would continue to grow and develop;
  • for us as we meet with doctors, that we might share the gospel through our story as we meet and speak with different doctors;
  • that God would continue to strengthen and equip us for the days ahead, and that we would praise His name no matter the outcome

I read the following quote on Twitter from Eric Ortlund and it has stuck with me and been a constant prayer for my heart to remember:

“Jesus you are better than an easy life – the fantasy life I’m always thinking up, where nothing goes wrong. You are sweeter and more thrilling and satisfying than that.”

Yes! Lord, I believe, help my unbelief.

“Not only that, but we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God’s love has been poured into our hearts through the Holy Spirit who has been given to us.”

‭‭Romans‬ ‭5:3-5‬

Thank you so much for loving and supporting us! We are so so grateful for you and your part in Ellis’ story.

Jordon, Cooper, and Ira