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

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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

Home update

We have been home for two weeks! I would be lying if I didn’t say these two weeks have been some of the hardest, yet sweetest, two weeks of my life. Those ten weeks in the hospital were probably tougher but this is a new kind of tough. We’re slowly but surely finding our new normal though and maybe we’ll even get some sleep one day. HA.

We are so so incredibly happy to be back under the same roof as a complete family. Ira has adjusted so well to being big brother and we are just in awe of how sweet he is to Ellis. He does have his moments though and the first few days were tough because he still thought every time we laid him down to sleep for a nap or bedtime that we were going to leave him. We had many tantrums and super exhausting bedtimes where we were having to peel him off of us after rocking him for hours.

I had mentioned in an earlier post how we had not prepared our home for Ellis. We didn’t buy much in regards to baby items, and we didn’t set up a nursery or space for him because we didn’t want to have to put it all away if he didn’t make it home. We came home to our house completely ready to welcome us back, thanks to our amazing friends, family, strangers, and an organization called The Nursery Project. Thank you to all who have loved us so well and who helped make our home a place ready for Ellis and a nicer place to hang out in since we won’t be leaving it very much for awhile. We are so blessed and incredibly grateful! I cried really big grateful tears when we got home but thankfully my mom messed up the video of that so no one has to see it 😅

Ellis has had a few appointments since being home. Overall he is doing well and I think really enjoying being home. He is happy and peaceful most of the time. We are so grateful for that! Our first weekend home we ended up back in the hospital after his incision from his heart surgery started looking infected. We sent pictures to the surgeon and they were pretty sure we were going to have to do a procedure to drain his incision. They told us to prepare for a few days stay at minimum. We prayed and asked for healing. And God provided. By the time we got checked into the hospital the next morning it looked significantly better. The surgeon did not want to drain it and we started IV antibiotics. After 24 hours of those we were ready to be sent home!

Testing out a non-ICU stay at the hospital.

We had a follow-up appointment with them last Monday and they rechecked his incision and did an X-ray to check how his sternum is healing. Everything is looking really great! We don’t see his cardiologist to actually check his heart until the 15th of this month. But his incision and sternum are healing well.

Since being home, Ellis has had an inguinal hernia pop up. We went and saw his general surgeon (who did his diaphragmatic hernia repair) and we’ve decided to try and get Ellis through the winter before fixing it. If it starts posing any issues or gets to where we cannot reduce it we will be having surgery immediately, but for now we are waiting. We want to give Ellis a chance to grow more, his lungs to get stronger, and try to avoid catching anything from being in the hospital during flu/rsv season.

We also had an appointment with his pulmonologist. This is Ellis’ lung doctor. Ellis’s lungs are his most critical part right now. He came home on 1/8th liter of oxygen and before we left the hospital we did an X-ray and a blood gas to have a baseline. We did another blood gas at this appointment and unfortunately his CO2 levels have climbed up to 68 from 60 at discharge. The other numbers they check looked good still but this number is not good and we definitely need it lower. She isn’t sure why this number is so high. Pulmonary hypertension usually presents itself as needing more oxygen support and Ellis has held his SATs really well so we haven’t felt the need to increase his support. But his body isn’t exchanging well for some reason. And this number staying high like this can cause pulmonary hypertension. His right lung (his healthier lung) still sounded clear and his left lung (underdeveloped) still sounds crackly, as it always has. Our pulmonologist is curious to see what his echo will show when we see cardiology and we’re kind of waiting on that before we move forward with what to do about his lungs. He may need to go back on some lasiks which could help. In the meantime, we have increased his oxygen, even though his SATs have been fine, to try and clear that CO2 out and maybe bring that number down. If his echo looks great we will likely do a sleep study to see if Ellis is having some apnea.

We are working on getting all of Ellis’s therapies set up. He will have speech, occupational, and physical therapy regularly.

Other than appointments and therapies, we are just trying to keep Ellis healthy and adjust to life at home with him and Ira. We are so grateful that this is our life. Twelve weeks with Ellis, and two weeks at home! What a good God!

We are so grateful for your prayers and support. You have helped carry us and continue to do so. This is hard, but God is good and we are grateful for every single day we get with Ellis. Thank you for loving our family so well and thank you for continuing to pray! Below are some specific prayers we are praying.

    Continued health for Ellis; this season is yucky and Ellis has no reserve. The common cold would likely hospitalize him and potentially be life-threatening. Would you pray with us for continued health? That Ellis would not get sick this winter.
    Strengthening of his lungs; that Ellis’s lungs would continue to get stronger, that his left lung would grow and develop further. That he would be able to come down on his oxygen and even off of it at some point.
    Continued growth and development; Ellis has been growing! Praise Jesus! I know He has answered our prayers about milk and growth and we’re asking that he continue to do so.
    That we would not lose heart and would continue to praise Gods name no matter the outcome; the days are long and hard. The nights are short and sleepless. We’re grateful to be here but it’s still challenging. We’re tired. Would you pray with us for sustainment and continued praise?

Thank you so much for loving and supporting our family throughout this journey. God is so good!

https://createdbycreator.files.wordpress.com/2018/10/img_9397.mov

Going home!

Ellis is going home! It feels surreal and I imagine until we walk into our home with both of our boys it just won’t feel real. What a God! What a gracious, loving, all-powerful, still in the miracle business, God! We are praising and celebrating!

Ellis is coming home on 1/8th of a liter of oxygen, a pulse-ox monitor, and his g-button. He is stable, but he is not “healthy”. And I don’t mean to be negative about that but it’s the truth. Ellis will always be medically fragile and we will be protecting him the best we can and monitoring his health at all times. We will have many appointments and therapies as we try to best help Ellis grow and thrive. Ellis has a life-limiting diagnosis, but we are going to give him the best life we can provide for however long God has ordained for him to live. We are so excited and feel so blessed to be bringing him home!

Thank you for praying with us! God has answered prayers and has shown up in really big ways. He has been in every detail. He has sustained us and has sustained Ellis. He has given Ellis life and breath and we are grateful for all sixty nine days so far. We are asking for many more and would love your continued prayers for our family as we navigate this new season! What a joy to be in this place with our sons at this time. God knew this day, he knew we would come home on day sixty nine. How great is that! And he goes before us even now.

“for the Lord will go before you, and the God of Israel will be your rear guard.” ‭‭Isaiah‬ ‭52:12‬

“You hem me in behind and before, and you lay your hand upon me.” Psalm‬ ‭139:5‬

We are so excited for friends and family to meet Ellis and spend time with him. We cannot wait for that! Please help us protect Ellis and if you do come to visit him or our family please wash and sanitize your hands very well, leave your shoes at the door, and if you are sick, have been sick, or have been around anyone who was sick in the past two weeks reschedule your visit for a better time. A simple cold for Ellis is life-threatening. His lungs do not have much reserve and the sniffles to you could be extended hospital stays, major respiratory set-backs, and potentially life-threatening issues for Ellis. We are trying not to live in fear or keep Ellis in a bubble, but we also want to be cautious, smart, and protect him the best we can, especially while he’s still very small and trying to heal and strengthen his lungs. Thank you for understanding!

Ellis taking his wagon ride for his first time outside of the NICU

We are continuing to pray and ask God for sustainment and stabilization of Ellis’ life. We would love your continued prayers and below are some specific ways we are praying through this season:

  • A relatively easy adjustment to being home for us, Ira, and Ellis; as we work out what home-life will look like, as we tweak schedules and try and get rest, as Ira gets used to having a baby brother that requires much of our attention and time, as Ellis gets used to the sights, sounds, smells, routine of life outside of the NICU
  • For Ellis’ health and lungs; that he would stay healthy especially through the flu and rsv season. That his lungs would continue to grow and get stronger. Right now his left lung looks about the same as right after surgery. He has very little reserve and getting sick would be a major setback for Ellis
  • That Ellis would grow and thrive; we did not find a way to fortify Ellis’ milk without severely upsetting his digestive system. Because of that we are going home on just breastmilk. We are praying that would be sufficient for Ellis to continue to grow and thrive
  • That we would praise God’s name no matter the outcome, He is worthy, so worthy, of our praise! Ellis’ life will not be as long as we want it to be, we know and understand that. At anytime things could get really hard. We know God is good all the time. But we need him to sustain us and our faith and give us strength to praise him in all circumstances

Thank you for supporting our family. Thank you for your continued prayers! We love you!

Two Months

Two months. Nine weeks. Sixty four days. Sixty four days!

I keep thinking back to being pregnant with Ellis. We longed to meet him in person. We longed for five minutes with him. So many doctors tried to prepare me for that not to happen. I remember when trying to make appointments and get a plan for Ellis’ delivery, (and if you followed along since our pregnancy or maybe caught up on past posts you remember the back and forth between hospitals and the many doctors we met with), doctors would not want to make appointments or have discussions “until we get to the third trimester”. They said it in a way where I could tell they didn’t believe we would make it that far. And not all doctors did this. We had fantastic mfm’s who loved us and Ellis and really valued his life. They were believing with us that we would get to meet him. But, we were constantly reminded of the bleak statistics and we would just smile and say things such as, “we know the diagnosis, we understand the diagnosis and the statistics (which by the way are so far outdated it’s frustrating), but we’re praying for time with our son.”

I had read and been told from doctors so much about how it would go that I was more prepared to lose Ellis within the first couple of days than I was to have time with him. I actually put off all logistical planning of what it would look like if we had an extended nicu stay or if we actually got to bring Ellis home. My heart and my mind were very prepared not to. They weren’t nearly as prepared for sixty four days with him. What a blessing! God is so good to give us more than we ask. He knows my heart so he knew my fears of an extended nicu stay and my fears of bringing home a special needs baby. And he is using Ellis’ life to reveal things in my heart that I didn’t realize were there. My need for God every single day is substantial. That has always been true but this season has made me more cognizant of that truth.

It’s been a while since I’ve posted an update here and I am so sorry about that! I try to post daily photos of Ellis on social media but if you’re not on social media you miss out on some of that.

On my last update I had posted that Ellis was going to be extubated that day. He was and did so fantastic! He went to bubble cpap and in just a matter of several days we were weaning off of it to high flow oxygen! The respiratory progress Ellis has made since heart surgery has been amazing. It truly is a miracle and an answer to so many prayers. Ellis started out on 6 liters of oxygen and we have currently weaned down to 2. Once he gets down to 1 liter we will switch over to a low flow oxygen – and that is something he can go home on!

For the first time we have started having conversations about discharge and going home. We still don’t have a date yet but we have some goals ahead that if met would mean we get to go home. When I asked for prayers to go home soon, to be with both of our boys under the same roof (and that roof not being the hospital 😅), I said we were praying a big and bold prayer. But you guys, God is answering our prayers! I can’t believe we so quickly started having these conversations after praying for it. Our God is so big, so strong and so mighty, there’s nothing our God cannot do! I think we will be home before we know it.

Since coming off of cpap we have been able to start attempting bottle feeds with Ellis. He takes about 2mL of his milk by mouth now with a bottle! That is such a big deal for Ellis. We knew he may struggle to grasp the “suck, swallow, breathe” skill. We also knew he may never eat by mouth because of complications that can come from his Trisomy 18 and also complications that can come from his diaphragmatic hernia. To be able to do this feels like another miracle. I don’t know if he will ever take a full feeding by mouth, but that’s okay. We’re celebrating these huge accomplishments!

We’re trying to figure out Ellis’ nutrition once he goes home. Right now he gets a fortified milk added to my breastmilk to help him grow. He is very tiny and we want him to continue growing at the rate he is if possible. But, we can’t get the fortified milk outside of the hospital. We have attempted adding two other types of high calorie formulas to his milk and his belly is not handling either of those well. We can go home on just breastmilk, but because he’s growth restricted he may not grow well on it. This is one hurdle we are praying through and would love for you to pray with us.

Taking Ellis home is going to be the sweetest gift. We are so excited for that day and are patiently waiting for it to come. We’re also now realizing there are so many things at home we need to get ready for that day. I mentioned not logistically planning for Ellis to come home and we really have prepared nothing at home yet for him!😳 But I’ve started a list! And now we get to start making those preparations – a sweet victory!

Ellis coming home doesn’t mean he’s healthy, though. Life at home with Ellis will be challenging and will take some adjustments to our “normal”. He will come home with a lot of medical equipment and we will likely spend more days at doctors appointments than anything else. It’s a little bit scary but we are excited and hopeful about getting to bring him home one day. Thank you Jesus!

Thank you sweet friends for praying for Ellis and our family. We are so grateful for the way you have supported our family in love, prayer, meals, snacks, a mattress pad 🙌🏻, ears to listen, cookies 😉, money. You have no idea the weight you’ve carried for us. We love you.

Below are our current prayers. We’d love if you joined us in praying for these things. One day I’ll write a post full of all of the answered prayers. There’s been so many. Our God is faithful.

  • Continued sustainment and stabilization; that Ellis would remain stable and God would continue to sustain his life
  • Healing and strengthening of Ellis’ lungs and heart; that Ellis would continue to make forward progress with his respiratory status and would be able to wean off of high-flow
  • For Ellis’ belly and a solution for his nutrition plan going home; that we would find a solution that gives Ellis adequate nutrition and calories without upsetting his digestive system
  • That we would all get to be home together soon! We are continuing to ask God for this, we feel we are so close to it becoming real
  • That we would continue to praise God’s name no matter the outcome, He is worthy of our praise! That we would be a light for the remainder of our time here and as we leave this place to those around us

“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

We’re back in the NICU!

Yesterday we came home to the nicu! It was a sweet day and Ellis literally smiled all day long once we were back. God is so good to give us this familiarity again! We are blessed.

Ellis’ surgery and recovery went “better than anticipated” as one of his palliative care doctors said (whom we love and adore). She said we had hoped he would do this good but we didn’t anticipate it. God sustained and provided.

Praise the Lord! Praise God in his sanctuary; praise him in his mighty heavens! Praise him for his mighty deeds; praise him according to his excellent greatness! Praise him with trumpet sound; praise him with lute and harp! Praise him with tambourine and dance; praise him with strings and pipe! Let everything that has breath praise the Lord! Praise the Lord!” Psalms‬ ‭150:1-4

His recovery wasn’t without difficulty though. We knew it would be longer and tougher than a typical baby’s due to his other medical and genetic conditions. The first couple of days and nights were stressful and we chased vital levels and comfort issues. But God provided doctors and nurses who were ON IT and he sustained and stabilized Ellis. Ellis ended up needing a couple of different heart and blood pressure medications, many different sedation types and doses, antibiotics, nitric oxide to help his lungs, potassium supplements, loads of diuretics, X-rays, echos, labs and gases, new IV’s as he continued to blow his, a blood transfusion (last night actually), cultures on potential infections, and lots of monitoring and attention. But he came back yesterday weaned from all heart and blood pressure medications, off of the nitric oxide, down on his sedation, and with much less lines and monitors. We were able to pull his ART line today, have weaned his vent setting tremendously, are restarting feeds, and with plans to extubate today! God is good.

They have been watching his belly where we thought there was an infection for the possibility of necrotizing enterocolitis (NEC). NEC is an intestinal disease that happens when tissue in the small or large intestine is injured or inflamed. This can lead to death of intestinal tissue and, in rare cases, a hole (perforation) in the intestinal wall. When this happens, the intestine can no longer hold waste. So bacteria bacteria and other waste products pass through the intestine and into the baby’s bloodstream or abdominal cavity. Usually premature babies are at risk of this but it can also happen to babies with heart defects.

So far today his belly appears to be doing much better but they are keeping him on his antibiotics and starting extremely slow feeds to see how it responds (5mL).

And today we are extubating! We will go back to bubble c-pap with hopes he can come down off of it to high flow. We’re so thrilled that Ellis has come this far and are just amazed at God’s hand in every detail of Ellis’ life. He continues to show off and we are so grateful for yet another day with our beautiful, strong, miracle boy.

We know there is still a possibility that Ellis will need a trach to get home, but we are asking God to do what only he can, to strengthen his lungs and surprise doctors yet again.

Thank you for praying for Ellis and our family. I wish I could hug every single one of you. God has provided strength and peace and comfort that we know is not our own. He is good.

Would you continue to pray for us and Ellis? Below are some ways you can be praying:

  • Continued sustainment and stabilization of Ellis’ life
  • Strengthened lungs and heart and forward progress on his respiratory support; that Ellis would handle extubation perfectly, that we would even be able come off of bubble cpap and we could bring him home without a trach
  • Continued comfort and rest for us all; that Ellis would come off pain medication and sedation with ease, that we would all get rest
  • For Ira; continued peace and comfort for him, that he would feel loved and cared for because he is
  • That we would get to go home sooner than we anticipate; there is still no timeline but we are asking God for big things and why not ask for this too! That we would get home with our precious boys soon
  • That we would praise God’s name no matter the outcome, He is worthy of our praise!

“For from him and through him and to him are all things. To him be glory forever. Amen.” Romans‬ ‭11:36‬

Ira and Ellis

Ellis and Ira meet for the first time!

Ellis and Ira meet

Heart surgery and recovery

In an attempt to actually get this written before I’m again distracted I will summarize his heart surgery day and jump into recovery and what our prayer needs are.

Ellis had a successful surgery yesterday – he did better than expected and his large vsd was successfully closed. So many prayers were answered and God continues to show off! He is so good. Thank you for praying with us all day long! Surgery lasted right at 8 hours and it was a very long day. We had a peace all day and were distracted in the best ways with family, friends, and our sweet Ira surrounding us and supporting us. We are so blessed.

Pre-surgery
Pre-surgery

Last night was also a long and stressful night. Trying to find Ellis’ happy place with his vitals, on his ventilator, and his comfort level. Alarms were going off all night and it was bright and busy in his room. The lights never go off in this unit and they keep his doors wide open. A nurse is always at his side as they monitor him incredibly close. It’s a very different pace than the nicu but we’re getting more used to it.

Ellis post-surgery

Today we have continued to attempt to get him stable. We are having issues with low blood pressures and lots of excess fluid. His sats have been okay but periodically drop below where they want them. They think if we can get the fluid down his sats will be better. In order to pull off extra fluid though we have to get his blood pressure up. It’s a tricky balance. We finally tested his adrenaline levels and they are significantly lower than they should be with the stress his body is under. They believe it’s because there’s a communication error from his brain, likely due to his chromosome abnormality. Now that we know this we have started him on some steroids and epinephrine. The epinephrine will get to work while we wait for the steroids to kick in. They’re hopeful that by later this evening we will see some positive progress from those in relation to his blood pressure levels. Once we get that blood pressure higher and stable we can start aggressively trying to get fluid off of him which should help his sats.

Ellis is also more awake than we expected he would be. He keeps getting agitated so we are changing up his pain medicine in an attempt to get him more sedated and comfortable.

Would you pray right now for the following:

  • Continued sustainment and stabilization of Ellis’ life
  • Higher and stable blood pressure levels
  • That we can get his excess fluid off
  • Good sats and blood gases – continued weaning of the ventilator
  • Comfort for Ellis
  • Continued strengthening of his heart and lungs
    That we would continue to trust God and praise his name no matter the outcome, He is worthy of our praise!

It’s been hard to see Ellis like this. He did not come back looking so sick from his CDH surgery so it has been an adjustment. We just want him healthy and recovered, but we know God is in control, his plan is good and his timing is perfect.

Thank you for praying for our sweet Ellis. Your prayers are felt and God is answering them in really big ways. He is good and we are blessed.

Ellis 8/28/2018
Ellis’ CICU Room
Off to surgery
Pre-surgery
Off to surgery