Eight months and eight days

God blessed us with eight months and eight days of Ellis on this earth. What a joy. What an abundant, kind, loving, God. He is so faithful. We are so blessed.

Ellis passed away in his momma’s and daddy’s arms on March 21, 2019. After a night of being held, his lungs had no more to give and he took his final breath.

He is loved and missed dearly. His absence here is felt deeply. The strange silence in our home that lacks medical equipment and cords and tubes and so many supplies is challenging. But it also paints a beautiful picture of the reality that Ellis no longer needs those things. He is healed and free and whole in the presence of his savior. He will never need oxygen again or his g-button or a pulse ox. He is healed. What a joy as parents to know that he is no longer in any pain.

We are grieving and mourning but we are doing so with so much hope. We know we will see Ellis again. And oh do we long for that day!

We will be celebrating Ellis’s life this Saturday. If you would like to join us the details are below. We will also (hopefully) stream the service live on Instagram (@mrs.jordonbailey).

Thank you for walking this journey with us. Would you continue to pray for us as we learn how to live without our sweet son and Ira, his sweet little brother? We love you.

The unexpected expected

We had a pulmonology appointment that didn’t go as we would have planned Wednesday. I kept saying it was the unexpected expected. We knew since Ellis’s diagnosis at 16 weeks pregnant that these days would come. But when you finally reach them it feels unexpected. Especially when he was seemingly doing really well. We knew in our guts he wasn’t doing “great”. We left the hospital last on cpap while sleeping and nasal cannula when awake. He looked fantastic. But he quickly started needing his cpap more and more (I’m sure you’ve noticed!). He had a cardiology follow up a few weeks ago and he all of a sudden had developed pulmonary hypertension. We have been monitoring this closely and he hadn’t had any up to this point. She said it was moderate, but alarming as it came fast, but we’ll watch how he does on his cpap and go from there.

I joked I would pack a hospital bag for his appointments Wednesday, as we all know Ellis to throw curveballs. And a couple times this past week Cooper and I have had the conversation of “do you feel he may be getting worse? Not sick but just like his body is tired?” “Yeah.” I have also felt the need to cherish even more each little detail about Ellis. Almost as if God was just preparing our hearts for the future. And he was. Because he’s kind like that. In clinic Ellis had a blood gas with CO2 of 94. If you’ve kept up with our story you know this is almost becoming normal for Ellis to show up at the hospital (usually the ED) with a CO2 in the 90s. Usually this would be an immediate intubation and transfer to the PICU. Lately we’ve been able to bring them down on cpap. He had been on his nasal cannula for about 45 min when the gas was drawn. I was already switching him back to his cpap because I could tell his body wasn’t tolerating it, when his doctor walked in with the results. Based on his PH level during that gas we don’t believe his gas is staying that high consistently. But it’s definitely swinging and we’re not sure how high it’s swinging to.

Ellis has these major respiratory issues for many reasons. The ones that we know of are his hypoplastic left lung due to his congenital diaphragmatic hernia. Basically because all of his organs were in his chest during the critical lung development time in my womb, his lung did not develop. His right one is not completely developed either but his left is almost as if it’s not there. It is “very simple” as his pulmonologist always puts it. Where blood vessels and parts that make the lung work should be, Ellis’s are not there. He also has low muscle tone which comes with Trisomy 18. So he isn’t able to take big strong breaths like me and you. He also has heart defects that have put a bunch of extra strain on his already delicate lungs. He has some slight obstructive apnea. And he’s had some major respiratory set backs over the past 4 months that have made it even harder for his lungs to gain strength – rhinovirus mostly. All of this to say that it isn’t just one thing causing Ellis this difficult time to breath. It’s a combination and one that makes it difficult to correct or help.

I sat with his pulmonologist for two hours in her clinic Wednesday morning. We cried as we talked through where we go from here. She laid out the options and gave her best medical advice and knowledge to them all. I then asked her personal opinion, knowing she loves Ellis probably the second most to his family. This sweet lady is so invested in Ellis’s life and care. She fought for heart surgery for him. She has advocated for him since our days in the NICU. She adores Ellis. We are so blessed by her.

We decided to be admitted so we could sit down with his palliative care team that day. We had an out patient appointment with them on Friday but she felt this couldn’t wait. So we headed to the TCU floor where we spent most of our last admission, and hung out until our “team” came. These people have been ours and Ellis’s biggest cheerleaders, our sounding board, our advocates, throughout Ellis’s entire life. Without them I could not imagine walking through Ellis’s hospital stays and overall care. They manage every part of his care and give us every ounce of support we need. They are angels and love our Ellis so incredibly much. So much so that when his palliative care doctor is having a bad day and we’re in-patient, he comes to see Ellis to make his day better. Ellis has won over the masses and the love people have for him is big and strong. I’m sure you understand because you’re part of that big love too ☺️

We talked again through all of the options. We talked about all of the decisions we’ve made thus far. How Ellis has surpassed everyone’s expectations. How Ellis is a true miracle and so incredibly loved and cherished by all who know him. We talked through what even further intervention would look like – for us and for Ellis. They held back tears as we talked about Ellis and all his stories.

We know Ellis will have a shortened life. It’s no surprise to us. In fact we prayed for just five minutes with him here on earth with us. And God has given us almost 8 months. That’s abundantly more than we asked for and abundantly more than we deserve. But it still doesn’t feel like enough. And it never will. No amount of time will. My sweet friend who happens to work at the hospital came by that day. She has walked through suffering and chronic illness with her husband who has cystic fibrosis. They have walked their journey with the most trust and faith you could imagine. And in fact this month last year, her husband was taking his final breaths during an extended ICU stay when God swooped in and provided lungs. Their story is incredible and will leave you in tears and praise. This month she is remembering what each day looked like during this month as they led up to transplant day. She is retelling her husband the things he doesn’t remember and reminding their family about the goodness of God in that season. She shared with me what she read from her notes on this exact day last year. Her husband’s doctor came in and asked him a very difficult question. “If you are not a candidate for transplant, how far do you want us to go? Where do we stop?” He talked through all of the options – making him comfortable and letting him pass to trach and vent and full intervention/code. And her husband said “To live is Christ. To die is gain. I get Jesus.” Gulp. Ellis gets Jesus. When he passes, his broken body will be made whole in the presence of his savior. He gets breath. He gets Jesus. This friend has been such an encouragement to me all along this journey. We sit and eat cookies on cookie Wednesday together (if you know, you know) and talk about how our people shouldn’t be alive, but God. We laugh and cry and she just gets it. We ate cookies and we laughed and cried. She reminded me that our hearts will always long for more because our hearts are not made for earth and temporary. They are made for eternity. So we long and we desire for eternity. Because death is ugly. And it isn’t supposed to be this way.

We took Ellis home that night. We’re going to soak up every ounce of him until Jesus takes him home. We’ll continue to give him cpap support as his body tolerates. We plan to take him to make as many memories as possible and probably throw him a party to celebrate him. We see his body growing tired, but we have no idea what this timeline will look like. His pulmonologist gave us her best guesstimate but it’s Ellis, he’s surprised us before and he will again I’m sure. Whatever that looks like. He is loved and we will be here loving him hard until he enters the arms of his creator and savior, completely healed and whole.

*I’m just going to go ahead and throw a plug in here for all the medical parents reading this that think they have a solution for Ellis’s struggles. Please know we have thoroughly explored all options, all interventions, to the very ends. We know there are options from here that would breathe for Ellis. We know that it may have helped your child. I love you for your heart and that you just want to help, seriously. You are an amazing advocate and momma/daddy. You are a sweet friend. But we know Ellis best, his medical team who loves Ellis more than I think any doctor can love a baby, know Ellis best, and we have fervently been praying for when this day comes that the Lord would guide and provide wisdom as we make tough decisions. Please hold your comments. They sting when we want what’s best for Ellis and have made decisions out of love for him.*

We would love your prayers as we walk this season. Our hearts hurt but they are also full of hope. We know our boy eventually will be healed – what a joy!

This is hard but you guys God is so good. He has carried us this past year. He has been ever so present. He is wrapping us up in His arms and holding us. He is holding Ellis.

Would you pray for,

Ira; for protection over his sweet heart. He adores his brother and “normal” now consists of helping care for him. His world will once again be rocked.

Ellis; for comfort and peace, that he would not feel pain or be in any distress. For the time we have left with him to be nothing but a joy.

Us; that we would soak up and cherish every moment with Ellis. That we wouldn’t struggle with doubt or allow the devil to creep in filling our heads and hearts with lies. That we would continue to praise God’s name, he is so worthy of our praise!

We love you all more than you know.

Isaiah

Ellis Isaiah Bailey.

We took a really long time to decide on Ellis’s middle name. We knew we wanted something Biblical, something strong, something that showed who Ellis was and who God was. We wanted it to really mean something. Two days after he was born we finally chose Isaiah. We both kept ending up in the book of Isaiah during my pregnancy and during those first very critical hours (days) after Ellis arrived. In the Jesus Storybook Bible, Isaiah is said to mean “God to the rescue!”

It continues to say,

“Now, God let Isaiah know a secret. God was going to mend his broken world. He showed Isaiah his Secret Rescue Plan: Operation “No More Tears!”

This is the message God gave Isaiah (It was like a letter God wrote to his children)…

Dear Little Flock,

You’re all wandering away from me, like sheep in an open field. You have always been running away from me. And now you’re lost. You can’t find your way back.

But I can’t stop loving you. I will come to find you. So I am sending you a shepherd to look after you and love you. To carry you home to me.

You’ve been stumbling around, like people in a dark room. But into the darkness, a bright Light will shine! It will chase away all the shadows, like sunshine.

A little baby will be born. A Royal Son. His mommy will be a young girl who doesn’t have a husband. His name will be Emmanuel, which means “God has come to live with us.” He is one of King David’s children’s children’s children. The Prince of Peace.

Yes, someone is going to come and rescue you!

But he won’t be who anyone expects.

He will be a King! But he won’t live in a palace. And he won’t have lots of money. He will be poor. And he will be a Servant. But this King will heal the whole world.

He will be a hero! He will fight for his people, and rescue them from their enemies. But he won’t have big armies, and he won’t fight with swords.

He will make the blind see, he will make the lame leap like deer! He will make everything the way it was always meant to be.

But people will hate him, and they won’t listen to him. He will be like a Lamb – he will suffer and die.

It’s the Secret Rescue Plan we made – from before the beginning of the world!

It’s the only way to get you back. But he won’t stay dead – I will make him alive again!

And, one day, when he comes back to rule forever, the mountains and trees will dance and sing for joy! The earth will shout out loud! His fame will fill the whole earth – as the waters cover the sea! Everything sad will come untrue. Even death is going to die! And he will wipe away every tear from every eye.

Yes, the Rescuer will come. Look for him. Watch for him. Wait for him. He will come!

I promise.

Love, God

This promise is the reason we have hope and peace and the reason we can hold Ellis so openhandedly. This promise is what has carried us through our pregnancy and through these seven months. It’s what will carry us through the hard days with Ellis here and the even harder days when he’s gone. But we also need that reminder daily, so Ellis bears the name of the reminder our hearts need. When we speak his name and hear his name and read or write his name we are reminded that God did send our rescuer and He did die for us, and He did rise again, and He is seated at the right hand of God, and He is going to return one day and wipe every tear from our eyes.

“But now thus says the Lord, he who created you, O Jacob, he who formed you, O Israel: “Fear not, for I have redeemed you; I have called you by name, you are mine. When you pass through the waters, I will be with you; and through the rivers, they shall not overwhelm you; when you walk through fire you shall not be burned, and the flame shall not consume you.” Isaiah‬ ‭43:1-2‬

Ellis is home after another couple (few? I lost count) weeks stay at the hospital. This time we ended up there just one week after being home from a rhinovirus stay. He was not sick but just in respiratory distress. When we got to the ED his blood gas was in the upper 90s again. He was exhausted. He had spent the one week at home crying almost constantly. We didn’t know what was wrong with him so we finally took him in just knowing something wasn’t right. The best we could come up with was that he is getting tired when on his nasal cannula which makes him work harder to breathe which exhausts him more and with less and less reserve in his already very poor lungs, he just runs out of juice. It becomes an ugly spiral that ends with dangerously elevated CO2 levels because he cannot oxygenate his blood. We also think he may have some underlying neurological pathway pain that could have been adding to the crankiness. So we started him on some medication for that pain and have gone the route of doing CPAP when he sleeps (all night and naps during the day). The CPAP is recharging his body so he is able to come off of it for a period of time during the day without exhausting himself too much. We have a whole new baby now! He is happy and energetic and doesn’t cry constantly and HE’S SLEEPING. He hasn’t slept in I can’t even tell you how long. Before we started doing cpap he would only sleep in 15-30 minute increments. Then wake up crying and would take hours to console and get back to sleep for another 15-30 minutes. We are loving life now even if it means we have more equipment and more steps to his care.

“You keep him in perfect peace whose mind is stayed on you, because he trusts in you.” Isaiah‬ ‭26:3‬

But we are home now (almost two weeks of home again) and are adjusting to our new normal. We also came home with orders from our doctor for 56 nursing hours a week. So we are working on getting nurses we love and trust set up to help us care for Ellis and give us some time to spend with Ira uninterrupted or take a nap or eat. We’re hopeful this time will make it to where we can love our boys and each other better. *Also if you’re an RN with NICU or pediatric experience and want to snuggle Ellis for a paycheck part time send me a message! ☺️

We had his first out-patient cardiology appointment last week. The first he’s made it to before ending up in-patient again that is. We did an echo on his heart to see how it’s doing. His smaller VSD that we did not close is getting smaller which is great. Unfortunately they found that Ellis has developed some mild to moderate pulmonary hypertension. We knew this was likely with his respiratory issues and we have been watching it closely with echos in the hospital. His cardiologist thinks it could be related to his most recent up and downs and in and out for respiratory distress. She wants to see how he does on the cpap for a couple of months and then look again at where he’s at.

“He gives power to the faint, and to him who has no might he increases strength.” Isaiah‬ ‭40:29‬

Thank you so much for continuing to cover our family in prayer. We are honored and blessed by the way you have loved and served our family.

“Have you not known? Have you not heard? The Lord is the everlasting God, the Creator of the ends of the earth. He does not faint or grow weary; his understanding is unsearchable.” Isaiah‬ ‭40:28‬

Here are some pictures and videos since our last post. I’m also going to link the video we were blessed with from Ellis’s birth. We are so grateful to have this day captured to look back on and I thought you may want to see it also! I cry every time I watch so grab your tissues 😉

Ellis’s birth video

Happy New Year!

We have been home forty days straight now! Forty days! We have celebrated Thanksgiving and Christmas and now we get to ring in the New Year with both our boys under the same roof. What a joy!

Ellis has been doing quite well for Ellis. We recently had a pulmonology appointment where we did a chest X-ray, a blood gas, and Ellis received his second dose of synagis which is a vaccine to help him fight off RSV should he get it. He had been increasingly fussy the week leading up to that appointment so we were a bit worried what we would find in an X-ray and gas. We were pleasantly surprised to get a gas of 57 and an X-ray that looked pretty good! His lungs looked better than when we last left the hospital but there was one area of question regarding a spot that could possibly be air outside of his lungs or maybe his hernia not recurring but pushing up as if having strain on it. His pulmonologist and the radiology techs felt it wasn’t anything to explore further at this time. His pulmonologist sent us home without further testing because Ellis looks so good and she didn’t want him spending another second at the hospital with potential to catch something 😅. We know his threshold for returning is low and if his status changes at all we are to come straight back to explore further. So far so good.

Ellis is officially off of his methadone as of a week ago. This feels really good to be done with! He weighs a whopping 7lbs 10ounces and is 20.5inches long. So like the size of a newborn! Ha. We’ll take it. He smiles when we dance with him and loves to be held and snuggled. Ira has been loving holding his little brother lately and asks to do it multiple times a day. It is the sweetest thing ever. Oh yeah, he also LAUGHED for the first time! I’ll post the video because it is the absolute cutest thing you’ll watch all day.

Ira turned two yesterday! He is such a joy and also very much “two”. The tantrums are in full effect over here and he wants all of our attention all of the time. I wish we could give it. It’s hard balancing him and Ellis. Really hard some days. Ellis doesn’t really sleep much. Like maybe a night a week he’ll sleep more than 15 minutes at a time. We’re so tired. He also doesn’t tolerate his car seat at all anymore and we don’t know why. He will scream and desat and he doesn’t manage his oral secretions when he gets upset so he literally becomes high risk of killing himself in his seat. It’s made it to where we can’t take him anywhere (not that we go anywhere other than to my parents house or the hospital) if we don’t have two adults in the vehicle and some serious mental preparation. It’s exhausting and I’ve cried on the couch, the side of the road, my driveway, the living room floor, etc. multiple times because of it.

We’ve been struggling with all of this for a bit now. It’s hard feeling like your life is at a standstill as you just wonder and wait for your baby to pass away. That sounds really dark but it’s the honest truth. We don’t know what will take Ellis’s life as he’s extremely complicated, or when it will take it – he could live for many YEARS (!) or not make it to one. And in the meantime we are trying to keep him healthy and well so he has the potential to grow and get stronger (and also stay out of the hospital so we can spend our time with him together as a family at home). There’s been a lot of frustration, from the adults and the kids 🙃 the past couple of weeks as we sort through our emotions and get only more sleep deprived and isolated by the day.

But hear me friends, especially if you’re expecting a medically fragile child yourself, this is hard but this is worth it. So worth it. I found myself this week driving around by myself (thank you sweet husband for sending me solo to pick up dinner through the drive thru so I could have a minute of peace) and praying asking the Lord what He was doing here. Why haven’t you taken Ellis home yet? Why is this so hard? Why are you depriving Ira of normalcy? Why why why. And God in his kindness and gentleness reminded me that we get to be a part of showing love to the least of these. Just like Jesus! Ellis feels like a burden sometimes. Sometimes more than a joy. But we get to show the world that even though he’s hard and this situation is hard and he will always require so much of us, his life has value and he is loved and we are proud he is ours. We get to celebrate his life everyday and the uniqueness of him. And we get to cling to the Lord for sustainment and peace and hope and rest and joy – ultimately we get more of Jesus because he blessed us with Ellis. And we get to show the world His goodness and kindness and love through the life of Ellis. WORTH IT.

I have way more to say on all that’s been going on and how joy and grief can coexist in the same space but I’m exhausted, and sick, so I’ll save it for another day. Thank you so much for loving our family well. Thank you for blessing us with prayers and gifts and food and support. It is so appreciated. We love you so much!

Below are some ways you can continue to pray for our family. We are so grateful for the way you have carried us!

  • Perseverance for Me and Cooper; we are exhausted. We rarely get time together. We feel the heaviness of all of this a lot lately.
  • Continued health for Ellis; he is currently sick and we are trying to stay out of the hospital. Back to back respiratory sicknesses like this will have a big toll on his overall health and prognosis
  • For Ira; he is not getting to live life the way a normal two year old would. He is learning how to be patient with us as we navigate all of this. His life has been turned upside down. Would you pray for his heart? That he would have an overwhelming peace, patience and understanding. That all of this would shape his character in the most beautiful ways? That he would see Jesus’s love for him because of this season?
  • That we would continue to praise God’s name in all the mess and beauty of this season, He is worthy of our praise!

Home again!

We’re home! After 19 days in the hospital, 18 of those days in the PICU, we got home at 10:30pm the Wednesday before Thanksgiving. So much to be thankful for!

Ellis’s time in the hospital was a rollercoaster, per usual. But let’s start at the night we took him to the ED. Ira had started having a runny nose and cough the day before so I took him to the pediatricians to be checked for all the big things: strep, RSV, and flu. All of those came back negative so our plan was to keep him as far away from Ellis as we could while also just having to live life. We protected Ellis the best we could, but because Ira was probably contagious days before he showed any symptoms, and because he’s (almost) two years old and touches EVERY SINGLE THING, Ellis started showing symptoms the next morning. We called his hospice nurse to come check him out so we could be sure his lungs were okay. She showed up shortly after our call (and can I just say I think all babies should come with a nurse that comes to your house instead of having to go into a doctors office full of sick people. I mean I can have toilet paper delivered to my door step in one hour, I feel there is a legitimate money making service to be had here). She checked him out and gave him a listen and at that time his cold and congestion was all in his upper respiratory system. His lungs sounded good and clear. The plan was to continue suctioning (hello portable suction machine 🙌🏻) and keep him as comfortable as possible.

Later that night after we got Ira to bed and started getting Ellis situated for the night he began dropping his SATs. We would up his oxygen support and they would go back up for a few minutes then would trickle back down. Around 1 am Cooper headed to my parents to get our concentrator that goes up to 5 liters in case we needed it. Around 3 am Ellis was working really hard, was very fussy, and we were up to 3 liters of oxygen. We jumped in the car (after my sister arrived to sit with Ira – shoutout to her for answering her phone in the middle of the night and hustling over) and rushed to Cooks ER.

They immediately put him on high flow, put an IV in, and got a blood gas and X-ray. His blood gas came back at 96. At that point he was in major respiratory distress and I remember hearing the ED doc saying over and over “we have to move him, we have to move him”, all the while I was thinking “where are they moving him to?!”. They quickly rushed Ellis out of the room he was in and into the resuscitation room, bagging him along the way. I remember thinking that this was it. He was dying. I remember seeing his SATs in the 40s. The room was full of doctors and nurses. After two attempts they were able to successful intubate Ellis and his SATs came up.

I sat in that room, holding my husbands hand, really thinking Ellis’s life was over. Neither of us were hysterical, in fact we were calm. We prepared for this. But more than that God covered us. As He always does. When they successfully intubated him and his color returned, my heart soared. I knew we had a long road ahead. I didn’t know if he’d ever come off the vent again. I figured we’d have tough decisions to make. But for at least another night, Ellis is alive. God has given life yet again to Ellis.

We hadn’t been able to get ahold of my parents (mom and dad this is your reminder to turn your phone volume on and up 😉) at all during this. I had started calling them around midnight to tell them Cooper was going to come to their house to get the other concentrator. I continued calling them all the way up until this point – which is now 6 am. They were going to wake up to about 50 missed calls from us. My sisters were calling also. After Ellis was successfully intubated and while we waited for them to finish everything in that room before we headed to the PICU, Cooper jokingly said, “maybe you should try emailing your dad. I bet he’s at his computer and has been since 3 am but hasn’t checked his phone.” So I did. Here’s the email I sent:

And I kid you not my dad called just one minute after sending that. If you know my dad, this makes total sense. They felt terrible (still do I think) but seriously I needed the humor of the email working over 50 phone calls. So thank you dad for that 😘

We headed up to the PICU where we were warmly welcomed back by familiar faces who got Ellis situated and settled.

I’m going to try and just wrap this up so here’s a really quick summary of 19 days in the hospital and I’m sorry but I forgot a lot of the details I’m sure. It went something like this.

Ellis diagnosed with Rhino virus. Intubated for 12 days I think? Two nights of needing CPR mixed in those 12 days just to keep everyone on their toes. God in all the details. Seriously all of them. Tried to extubate on day 11. Ellis does not like that plan. I wrestle with trusting the Lord and wanting it done on my own timeline. “I want to be home by thanksgiving God!” I pry my hands back open falling on my face at the feet of the one who holds all things in His hands, even Ellis. God provides peace and sustainment. We attempt extubating again, it’s rough. Really rough. About to reintubate, I beg for bubble cpap (they RARELY do bubble cpap in the PICU. Like his RT one night said he’s worked there for 7 years and Ellis is the second time he’s seen it done.) They give Ellis one hour on bubble to get it together, his gas goes from 93 (I told you it was a rough extubation 😅) to 56! In one hour! Only God. Bubble lives another day but all weekend long Ellis walks the line of being reintubated. I’m at home with Ira and Cooper calls from the hospital Saturday night saying he’s had another bad gas, they’re preparing to reintubate but the nurse practitioner who’s on and knows Ellis pretty well at this point says she wants to try a last ditch effort of high flow one more time. I cringe and say this is going to be a complete nightmare but okay, “let me know how that goes… 🙄” AND ELLIS SOARS! All weekend, I prayed boldly, knowing if it were going to happen it would have to be the Lord moving and doing, that Ellis would be home by Thanksgiving. It seemed silly at times to even ask God for that. He is providing Ellis life, four months of life, and I want him to get us out of the hospital by Thursday? I would laugh at myself. But it’s what I wanted so I asked anyways. I asked persistently.

Tuesday Ellis was down to 1.5 liters of oxygen – what he was going to be sent home on. He looked amazing, was awake and interacting in ways Ellis does. We moved to “the floor” and out of the PICU that night.

Wednesday I was ready to go home. Ellis had held up his part of the deal – 1.5 liters for over 24 hours and doing great. He still had his PICC line and his only additional med outside of our home meds was methadone. I knew we’d have to wean off the methadone and there was a possibility it could be done at home. His pulmonologist came by and said she was good letting him go but she would find out from palliative care what they think about weaning his medicine at home. She left and the palliative care social worker came in and we started chatting. His pulmonologist came back in just a few minutes later and said she talked to his palliative care doctor and he did not feel comfortable sending Ellis home to wean the methadone there. He wanted to be able to watch him closely since he is special and sensitive. I started crying. I don’t cry often. But I cried in front of these two ladies. “Okay” I said. But it didn’t feel okay. I wanted to be with my family for Thanksgiving. I wanted to be with Ira and Ellis together. And not in the hospital. The social worker got up and said “I’ll be back. I’m going to talk to the doctor.” Shortly after she walked out, the palliative care nurse practitioner, who had been in a care conference for the past two hours, walked in. I was crying and she asked what was wrong. I told her I was upset about not being able to wean his medicine at home and we talked about why. She then left and a little while later comes walking back in saying, “You know you are loved right? I didn’t even get down the hallway when I left before I got a text from the doctor telling me to come back to the office because we were having a meeting about Ellis.” The social worker then walks in and they begin to tell me that if we agree to the conditions, the very strict conditions, Ellis can wean his methadone AT HOME. This would not be happening if we didn’t have hospice in our corner. Hospice has to see Ellis daily, we have to check in with palliative care continually, if he shows any signs of withdrawal we have to call immediately and have a plan in place, and we will wean so slowly that it will be Christmas by the time he’s off of it. I agreed and cried happy tears and told them how much I appreciated them advocating for our family. We feel incredibly loved by the staff that cares for Ellis. We are so blessed. The doctors had to jump through some serious hoops to get Ellis all discharged and we were leaving the hospital at 9 pm that night. Thanksgiving at home with both of our boys! God answered my prayers! He didn’t have to, but he chose to!

So far Ellis is doing really well! We thought he was getting sick just two days after leaving the hospital but he cleared up and looks really great. We are so grateful to be home! Ira will not let us out of his sight, or really personal space, at all. He’s just so glad to have us back again. It’s the sweetest gift to be home again with both of our boys. We are trying to not take a second of it for granted. I can’t explain the pull my heart has for my two boys. I wish I could be everything for both of them all the time. It’s hard. The hardest part of this whole journey in fact. I never want to have to set Ellis down. I never want to have to not play with Ira. I’m trying to balance this all the best I can but of course I’m only human so I’m messing it up a lot. But, home has been so sweet. We’re hoping and praying we get to be home for a very long time before we end up in the hospital again. We’re praying Ellis stays completely healthy through this flu and cold season. We know back to back hospital stays due to sickness will not be good for Ellis’s fragile lungs. So for now we’re basically hibernating in our home the best we can, knowing we are ultimately not in control – and thank the Lord for that!

We would love for you to continue to pray for our family and Ellis. Would you pray:

  • That we stay completely healthy and Ellis does not get sick
  • That Ellis continues to grow and thrive at home
  • For Ira’s heart and for peace and understanding
  • For sustainment and endurance for me and Cooper; this is hard. Really hard. It’s really exhausting. Being in the hospital for weeks at a time makes it even more so. But even being home is hard. We can’t get out really at all which feels isolating. We feel like we’re constantly waiting for Ellis to get sick or pass away, and that just drains us emotionally. Always on guard for the worst. Always hoping for the best.
  • That we would praise God’s name no matter what, and especially on the hard days. He is so worthy!
  • “Hear my cry, O God, listen to my prayer; from the end of the earth I call to you when my heart is faint. Lead me to the rock that is higher than I, for you have been my refuge, a strong tower against the enemy. Let me dwell in your tent forever! Let me take refuge under the shelter of your wings! Selah” Psalms 61:1-4
  • PS. I’m reading a fantastic book called Remember God by Annie F. Downs and it’s amazing and I think you should read it too. Here’s a quote from it that I read in the midst of the rollercoaster:
  • But you also know I’m not a quitter and I will not walk away from this book until we are all convinced, myself included, that God is kind – until our belief is ruthless and can stand up against any situation – until we are sure, deep down in our guts, way further down than where it can be stirred and messed with by life, that God is incredibly kind.

  • Because He is.

  • God does not disappoint. He always provides.

  • Selah. That’s what is true, and that’s what is swirling around in my mind. The empty places and the things that fill them. The manna, the divine provision from God. The way He shows up in places and faces that we would never expect. This is the part of our God, the kindness part, the show-up-ness part, that’s been messing with me. And changing me. And holding me.

  • If only I can keep from forgetting it.

  • 88 days in the hospital.

    I have moments where I want to throw in the towel. I want to be done. “Lord I’m holding him in open hands, why haven’t you taken him yet!” This is all hard. The daily routine of extra steps, extra cords, extra monitors, extra precautions, extra hospital stays. An almost four month old that feels like a newborn. Who requires around the clock attendance and monitoring. An almost two year old who has to be okay with our routine changing on a dime when baby brother needs more of mom and dad, when baby brother needs weeks in the hospital. Who has to be okay with playing at home instead of at the park because we have to protect brother’s immune system the best we can. Will we ever get past the “newborn phase” that is no sleep and extra needy. Will we ever get more time at home than we’ve had in the hospital?

    I struggle at times with wondering if we made the right decisions. If surgeries and interventions were what was best for Ellis. Should we just have held him and loved him for the short time he would have lived without? Should we have only let him know love and snuggles instead of medicine and intubation tubes and pricks and needles? I believe and know that when God does choose to take Ellis home that Ellis will be fully healed. I struggle with the desire of wanting that for our baby boy and the desire of wanting every moment with him here in our arms. What is God doing here? I know He’s at work. I’ve seen the fruits of that work as Ellis’s story provides hope to a family with a similar diagnosis or someone tells me for the first time in twenty years they have prayed again. I see it when I force my eyes up instead of down. It’s a daily, sometimes hourly exercise to get those eyes up though. It’s a battle of guilt from the enemy and hope and courage from the Father.

    And I’m so grateful for these hard days and challenging moments. I get to hold and see my baby. This is a blessing. It is. But it reveals the brokenness of this world. It shows that because sin entered the world, Ellis is not healthy. This is all not normal or easy or perfect. It’s plans changed and dreams crushed. It’s sick instead of healthy. But one day, one day, death and sickness and tired will all be replaced with life and perfect healing. With dancing and joy. I know that day is coming because God said it is. These moments will be but a speck.

    “So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal.” 2 Corinthians‬ ‭4:16-18‬

    We’re back in the hospital. Back in the PICU. Ellis caught rhino virus which sent him into respiratory distress. He is intubated and recovering. The doctors say it could take weeks for Ellis to get over this. We are following his lead and weaning support as he tolerates. Another blog post with our time at home and the story of landing back here to come.

    God is in this. He is for us. He is not shocked or frazzled. He is good.

    Thank you for following along. Thank you for hoping and praying with us. Thank you for encouraging when our hearts need it most.

    “He will wipe away every tear from their eyes, and death shall be no more, neither shall there be mourning, nor crying, nor pain anymore, for the former things have passed away.” Revelation‬ ‭21:4‬

    CDH repair… take 2

    WHAT A DAY! I’m tired.

    Friday morning we headed to the ER after a couple of days of increased fussiness, some desats that seemed to be increasing in frequency, and then finally a need for increased oxygen support. Our pedi is fantastic and has been checking up on Ellis every other day and we decided it would be best to just bring him to Cooks to get a chest X-ray and blood gas to be sure he was okay.

    When we got to the ER they brought us back and immediately got an X-ray and gas. The blood gas came back with a CO2 level of 74. This was up from 68 at our pulmonology apt we had about a week and a half ago. A couple of hours passed and a dr came in and said that the radiologist had read his chest X-ray and believes Ellis’s diaphragmatic hernia had Re-herniated. If you’re new to Ellis’s story he had his original congenital diaphragmatic hernia repair at four days old. A diaphragmatic hernia is a hole in the diaphragm which allows the contents of his intestines (stomach, spleen, livers, bowels, etc) to come into the chest cavity and crowd his lungs and heart. In utero this severely affects how his lungs grow and develop. They were not 100% sure it had reoccurred so they wanted the general surgeon to take a look at the X-ray and confirm.

    We prayed that the surgeon on call would be the same surgeon who did his original repair. We loved him and completely trust him with Ellis. He loves the Lord also which is always a perk and added level of comfort.

    God is in the details and Dr. Thomas was indeed the man on call. His nurse practitioner took a look at the X-ray because Dr. Thomas was in the OR and then came down to tell us she agreed with the radiologist but she also wanted Dr. Thomas to lay his eyes on it so she was going to go up to the OR and show him the X-ray.

    Ellis has recently had an inguinal hernia show up that we have seen Dr. Thomas in clinic about. Our plan with it was to try and get through the winter/sick months before repairing it, as long as it didn’t present any issues. When his nurse practitioner came into the OR he originally thought she was referring to his inguinal hernia. When she repeated that it was his diaphragmatic hernia he responded with “there’s no way!” He said he went back and thought about Ellis’s repair and again said, “there’s no way! That was a solid repair, no patch was necessary. There’s just no way.” WAY. He pulled the X-ray up in the OR and sure enough there it was. He ordered a CT to get a good look at what all was up in his chest and then came down to tell us the plan. We would operate this weekend to fix it again and also go ahead and fix his inguinal.

    After nine hours in the ER we finally got a room up in the PICU and were officially admitted. Upon our arrival at the PICU they went ahead and took another blood gas. Ellis’s level was now at 81 – critically high. We put him on high flow at the highest setting to try and help him.

    Morning came and cardiology, pulmonology, and surgery all consulted and decided to get Ellis to the operating room Saturday morning. We got Ellis prepped and a little after 10am we were headed down to the OR. We prayed, knowing Ellis was yet again “very high risk”. Off we sent him, under the care of a highly qualified team of perfectly ordained doctors, nurses, and surgeons.

    After an hour and half we got the first update that the surgeon had just begun his work. Ellis is a tough stick and they had to put in all sorts of access/IV lines, intubate him and put him to sleep. This always takes a good while. After another hour we got another update that Ellis was doing great and they were continuing with surgery. A little while later the anesthesiologist came out to the waiting room to personally tell us that he has been absolutely amazed by Ellis and how well he was doing. He told us they were never able to get his arterial line in after many attempts but because Ellis was doing so amazing he just decided to quit trying and do without that extra monitoring. God was holding Ellis in his hands and shocking doctors. We have always prayed he would and he continues to do so.

    Dr. Thomas was able to fix his diaphragmatic hernia with a patch. He said the hole was due to some stitches pulling and the muscle was actually still laying on each other where he could have just sewn it right back up. He told Ellis he could get him once but not again so he decided to use a patch also for some reinforcement. The original pulling was due to some sort of tension and straining so it was likely to happen again. If you know Ellis you know he’s a strainer so we were not surprised one bit. Haha. He was also able to fix both inguinal hernias that he had. The one on the right side was huge and the one on the left was small. Both were fixed up and he should be good to go on those. He was also very ecstatic about how stable Ellis remained. God is good.

    Recovery has gone well so far but it’s always a rollercoaster and two steps forward one step back. They wanted to try and extubate just hours after surgery and we kind of giggled but said “okay!”. Ellis usually takes 10-14 days before he’s ready to come off of the vent. Ellis started waking up and they did a readiness test and he took zero breaths on his own. So we decided to leave him on overnight and just keep him comfortable. Ellis has been in a lot of pain and he has a high tolerance to pain medication unfortunately due to being on it so much with his history.

    His blood gases have been good but he is having some low hematocrit levels. We will likely do a blood transfusion (update: we are starting a transfusion now). I think that may make him feel better and he may then want to start initiating some breaths. We will see! Once we extubate and get him stable we will likely move to a regular floor.

    Thank you for praying for Ellis and our family. Once again God has shown off and he continues to sustain Ellis. I was weary about this surgery but I guess I need to stop underestimating Ellis and our big God. We still have a ways to go but I’m hopeful we’ll be home soon.

    He gives power to the faint, and to him who has no might he increases strength. Isaiah‬ ‭40‬:‭29‬ ESV

    If you’d like to pray for our family below are some specific ways you can be praying. We love you and are grateful for the way you have supported and loved our family.

    • Continued sustainment and stabilization of Ellis’s life
    • That Ellis would start initiating breaths; that we would be able to extubate soon and he would breath flawlessly
    • That Ellis would be comfortable and pain free; that we would find the right balance of sedation and pain medication to ease his pain but not suppress his breathing
    • For Ira; he is struggling with all of this, seeing us back in the hospital and being away from us again. He is mad and grumpy and I know his heart is hurting
    • That we would use this time and space to minister to the people around us and we would continue to praise God no matter the outcome, He is worthy of our praise!

    As a deer pants for water, so my soul thirsts for you

    And when I survey your glory, you so faithfully renew

    Like a bed of rest for my fainting flesh

    I am satisfied in you

    Let my sights give way to songs that sing about your faithfulness

    Let my pain reveal your glory as my only real rest

    Let my losses show me all I truly have is you

    Cause all I truly have is you