Wells Family: Baby Simeon Heart Surgery

Wells Family: Baby Simeon Heart Surgery

From Emma Wells

Baby Simeon was diagnosed with Down syndrome and severe heart conditions - Tetralogy of Fallot, an Ebstein valve, and coronary sinusoids. He was born April 5th and will need surgery or a heart transplant.

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Update #15

4 months ago

Our catheter procedure on September 23rd went well. So many answered prayers for our little boy. He came out of anesthesia great, he didn't need any oxygen afterward, and though we prepared for a night or two in the hospital - we were sent home the same day! So thankful, and celebrating victories for our buddy.

The catheter doctor said pressures in his heart looked promising for a Glenn surgery. There is some concern due to his Down Syndrome that his arteries could possibly not handle the extra pressure from blood flow to his lungs, but results from the procedure looked good. The procedure itself went great, but Simeon stayed on brand and gave the cath doctor something she had never seen before. Usually tissue builds up on the inside of the vein or artery where the stent or shunt is placed, in response to the foreign object. Simeon has tissue building on the outside of where his stent was placed, and it is causing a little kink in his artery. Another stent could have been placed, but it is in the area of the artery that will be cut out and rewired in a Glenn. The doctor who did the procedure thought the kink was concerning enough that she moved us up on the list to get surgery within a couple weeks.

We got a call a few days later that our surgery had been scheduled for October 12th.
We had originally been prepared for surgery in October, but with everything in the medical world moving so slowly...we expected the end of October or possibly into November. October 12th now expedited the process and put us into the last two weeks before surgery very quickly - without having hashed out with doctors and surgeons what would actually be taking place.

Physical therapy yesterday went well. We saw a different PT that seemed to be a better fit for us and was very encouraged by where he was at with head and trunk control, as well as the way he engages his muscles when trying to roll on his side. We are still struggling with a super flat head, but his muscles and development seem to be making good progress!

Today we saw our out-patient cardiologist, a nutritionist, and Simeon's general pediatrician who works specifically with medically-complex kids.

Little sir is still 98th percentile for height on the Down Syndrome chart, and weighs in at almost 17 pounds now. He charms everyone he sees, and is such an easygoing guy even on full, hard days. We're waiting on some blood work recommended by his pediatrician, just to rule out a couple of things she saw as possible issues, but other than that she was happy with how he is doing.

His cardiac echocardiogram looked unchanged, which is good news. We got to ask questions of our cardiologist and get a better idea of what to expect for surgery. Our impression was that Simeon was higher risk and more complex, so we could expect to be on the longer end of recovery time and follow-up. But the time frames our team gave us today are looking like a couple of weeks in the hospital to recover post-op, and about a month of follow-up after discharge.

We could possibly be sent home in about 7 or 8 weeks from now. Which brings up all the feels for us. We've been away from home for 7 months now, and we're ready for real life again. But Simeon's life is just beginning, and we know there are so many things ahead to make sure he is well taken care of after we go home to Texas.

On Monday we will have another full day of appointments and meetings as we prep and meet the team that will be performing the surgery next Wednesday. That will be the place where we get to ask final questions and get the best idea of what to expect as far as surgery and post-op goes.

It feels exciting and terrifying at the same time. Surgery is the whole reason we've been living away from home for so long. The teams and surgeons here in Colorado are incredibly well-equipped to take care of our baby. And yet heart surgery is no small feat, and variables and risks are very real.

You can join us in praying for peace. For wisdom. For miracles before Wednesday, and also for doctors and surgeons who are well-rested and on their A-game as they operate on Simeon. Pray for Leland and Veil and their little hearts, as life gets crazy for a few weeks again. Pray for smooth, clear paths to take, and for our lives to shine the light of the Lord as we spend time in a place that is dark for so many people.

We love you all. Thank you for walking with us.

More Info

Connor and Emma Wells recently gave birth to their third baby, Simeon. Simeon was diagnosed with Down syndrome and also has severe heart conditions - Tetralogy of Fallot, an Ebstein valve, and coronary sinusoids.

Surgeons and doctors are currently deciding on whether Simeon's heart can be repaired through surgery or if he will need a transplant.

The Wells family has relocated for the birth so that qualified, specialized personnel will be able to take the best care of Simeon. Once doctors verify Simeon's conditions, he will be scheduled for surgery or put on a transplant list. It could take months for the process to be complete, during which Simeon will not be able to leave the hospital.

Once Simeon has surgery or his transplant, he will likely need to stay at the hospital for weeks or months to recover before he will be able to go home with his family. Funds will be helping to cover costs of being relocated, delivery, time in the NICU, as well as the transplant itself and any other medical procedures that will be required for Simeon.

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Emma Wells posted a new update:
4 months ago

Update #15

Our catheter procedure on September 23rd went well. So many answered prayers for our little boy. He came out of anesthesia great, he didn't need any oxygen afterward, and though we prepared for a night or two in the hospital - we were sent home the same day! So thankful, and celebrating victories for our buddy.

The catheter doctor said pressures in his heart looked promising for a Glenn surgery. There is some concern due to his Down Syndrome that his arteries could possibly not handle the extra pressure from blood flow to his lungs, but results from the procedure looked good. The procedure itself went great, but Simeon stayed on brand and gave the cath doctor something she had never seen before. Usually tissue builds up on the inside of the vein or artery where the stent or shunt is placed, in response to the foreign object. Simeon has tissue building on the outside of where his stent was placed, and it is causing a little kink in his artery. Another stent could have been placed, but it is in the area of the artery that will be cut out and rewired in a Glenn. The doctor who did the procedure thought the kink was concerning enough that she moved us up on the list to get surgery within a couple weeks.

We got a call a few days later that our surgery had been scheduled for October 12th.
We had originally been prepared for surgery in October, but with everything in the medical world moving so slowly...we expected the end of October or possibly into November. October 12th now expedited the process and put us into the last two weeks before surgery very quickly - without having hashed out with doctors and surgeons what would actually be taking place.

Physical therapy yesterday went well. We saw a different PT that seemed to be a better fit for us and was very encouraged by where he was at with head and trunk control, as well as the way he engages his muscles when trying to roll on his side. We are still struggling with a super flat head, but his muscles and development seem to be making good progress!

Today we saw our out-patient cardiologist, a nutritionist, and Simeon's general pediatrician who works specifically with medically-complex kids.

Little sir is still 98th percentile for height on the Down Syndrome chart, and weighs in at almost 17 pounds now. He charms everyone he sees, and is such an easygoing guy even on full, hard days. We're waiting on some blood work recommended by his pediatrician, just to rule out a couple of things she saw as possible issues, but other than that she was happy with how he is doing.

His cardiac echocardiogram looked unchanged, which is good news. We got to ask questions of our cardiologist and get a better idea of what to expect for surgery. Our impression was that Simeon was higher risk and more complex, so we could expect to be on the longer end of recovery time and follow-up. But the time frames our team gave us today are looking like a couple of weeks in the hospital to recover post-op, and about a month of follow-up after discharge.

We could possibly be sent home in about 7 or 8 weeks from now. Which brings up all the feels for us. We've been away from home for 7 months now, and we're ready for real life again. But Simeon's life is just beginning, and we know there are so many things ahead to make sure he is well taken care of after we go home to Texas.

On Monday we will have another full day of appointments and meetings as we prep and meet the team that will be performing the surgery next Wednesday. That will be the place where we get to ask final questions and get the best idea of what to expect as far as surgery and post-op goes.

It feels exciting and terrifying at the same time. Surgery is the whole reason we've been living away from home for so long. The teams and surgeons here in Colorado are incredibly well-equipped to take care of our baby. And yet heart surgery is no small feat, and variables and risks are very real.

You can join us in praying for peace. For wisdom. For miracles before Wednesday, and also for doctors and surgeons who are well-rested and on their A-game as they operate on Simeon. Pray for Leland and Veil and their little hearts, as life gets crazy for a few weeks again. Pray for smooth, clear paths to take, and for our lives to shine the light of the Lord as we spend time in a place that is dark for so many people.

We love you all. Thank you for walking with us.

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Emma Wells posted a new update:
5 months ago

Update #14

We've been chugging along, getting bigger and stronger. Less appointments, overall, but still keeping tabs on all the systems in his body.

Simeon passed 16 pounds at his last appointment, and he gives us smiles and chattering with occasional giggles. Working hard at grabbing for things and putting things in his mouth are his new hobbies.

Tomorrow is a big day.

We will go in tomorrow morning for his catheter procedure. He will be put under anesthesia, and they will snake a catheter likely through his neck into his heart to monitor blood flow and blood pressures. This will allow us to gain as much possible information about how his heart is actually functioning and what might happen when surgery is attempted. We are expecting at least one night in the hospital to monitor him, but because his body has a hard time flushing anesthesia we will not be surprised if it is two nights before we're released.

He is still such a hard draw, that they couldn't get his blood drawn to type him before the procedure. Poor buddy just cries and cries while they try to find a vein to draw from. Since attempts were unsuccessful this time, they will have to draw blood once he is under anesthesia, then get blood products on hand in case they are needed during the procedure.

One step closer to open heart surgery.

With the data they gather during his procedure, his team of doctors and surgeons will begin putting together their plan for what surgery will look like in October. He will probably get a Glenn surgery, where they wire the heart to essentially bypass his almost-not-functioning right ventricle. It is referred to as a single ventricle protocol.

Many children do really well having their body function with one ventricle, but due to Simeon's particular combination of defects and his Down Syndrome it has potential to make this surgery harder on his body. We will be doing our best to predict how his body and heart will respond to a Glenn surgery, so we can be prepared and adjust as needed.

Nerves are not awful, since it is a fairly straight-forward and lower-risk procedure, but having your baby taken from you at the hospital is always hard. Simeon has so much more awareness and personality and quirks now than he did the month he was in the hospital after birth. It's hard to have a baby you've learned to read and respond to go through hard things.

Prayer requests:
For our family. We've been thrown into some hard things, being called to invest ourselves during a season when we do not feel we have much of ourselves to give. Prayers for grace, endurance, and hearts that are willing and glad to obey where God is calling us. Leland and Veil have still been little troopers, and we have been able to absorb a lot of the hardship and trauma for them, which is a praise.

For Simeon. We will continue to pray for miracles - for his heart, for his chromosomes, for his thyroid, for his eyes, for his muscles. We want a whole, free little baby...and even as we see bits of that coming through doctors and surgeons in a hospital, we will still knock at heaven's door asking for God to supernaturally heal our son.

Thank you for walking with us, friends! We will update you soon on how the procedure goes!

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Emma Wells posted a new update:
6 months ago

Update #13

Sweet Sim Sim hit 4 months old a week ago.

He is 14 1/2 pounds, growing big and chunky, and he gets ooh's and ahh's for his cuteness from all the nurses who get to meet him.

We dropped a nighttime feed, so little man is moving up in the world. After his swallow study (monitors where the liquid he swallows goes, to make sure it isn't going into his airways) our feeding therapist gave us permission to stop attempting bottle feeds. She saw nothing of concern. He was working so hard to only get a few ml's that she said not to worry too much, and to revisit oral feeding when he is ready for purees. We can work on bottle feeding for fun, if we'd like, but we're not longer concerned about trying to get him to take bottles. All of his feeding is currently through his G-tube, and we will wait till his mouth and oral skills develop some and he can attempt something more solid that gives his mouth more time to work up to a swallow. With all his healthy weight gain, none of his doctors seem concerned by this at all.

Sim is very much a "all is well" or "all is very NOT well" type of baby, and he goes from zero to sixty in about 2 seconds. And his scrunchy cry face is still the cutest ever. He is working on different types of cries now, and purposefully makes noises to talk to us. His coos are getting louder, and he has added a few new sounds to his baby repertoire. He makes lots of eye contact and works really hard to study faces when we're talking to him.

Watching the ceiling fans is his favorite pastime, and he even talks to them when he's feeling extra social. He hates when his toes are cold and will protest quite loudly until you figure out what's wrong. When brother and sister are playing, he loves to be laid down next to them to hear all the fun sounds of their imagination games. Oxygen was weaned fully, even at night, so his sweet little cheeks have been sticker-free and kissed a lot by his mama.

His body is about the same. He is still on a couple blood thinners to prevent clotting in his stent, and he takes medication for his hypothyroidism. The echocardiograms of his heart have looked the same at his biweekly appointments, so we are on standby until we have more information on his heart.

We will go in on August 23rd to have an extensive catheter procedure done, to measure and monitor all the pressures and blood flow in his heart. This will be to get information so his surgeon and doctors can start to come up with a plan for the surgery they will attempt in October.

In October Simeon will be 6 months old, which is when heart pressures begin to change in babies, and the new pressures would likely lead to heart failure. They are waiting as long as they can to get him as big and healthy as possible, while catching his heart for surgery before the pressures change.

The guess is we will attempt a single-ventricle surgery (called a Glenn surgery) that will set his heart up to function without a right ventricle. It will have the blood from his upper body go straight to his lungs instead of back to the heart, and then his underdeveloped right ventricle will essentially be bypassed and not have to try to pump blood anymore. His SVC (superior vena cava) would be detached from his heart and attached to his pulmonary artery. With Simeon's unique combination of heart defects, it is uncertain how his body would respond, and his Down Syndrome adds extra layers of complications. His team is hoping once we have all the data from the cath procedure, we will be able to make the most educated and best decision for Simeon moving forward.

We are still praying so desperately for healing for our sweet little buddy. God has shown up with little miracles throughout Simeon's whole story, and we believe He is still able to fully and completely heal every single organ, vein, artery, chromosome, and cell in Sim's body.

I have been clinging to the verse in Job: "Though He slay me, I will hope in Him." The span of possibilities is hard to grapple with, and the spectrum includes so many different outcomes that it is often hard to know what to pray, how to feel, or what to hope for. But God remains constant. His character does not change, despite my feelings and circumstances being ever-changing. He waits patiently as I cry, as I shake my fists at Him, as I brokenly choose joy, and as I cling to my baby on nights when I wonder how many more chances I will have. Because He is good. He is greater than circumstances, and I will forever worship Him. Because He is worthy of my praise. Even in this.

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Emma Wells posted a new update:
7 months ago

Update #12

A whole 3 months with our little Simeon Palmer boy.
He gives us occasional smiles.
Coos happen when he gets in a chatty mood.
He loves kisses from Mama and sweet words from Leland. (Little mister plays favorites already.)

Veins prove hard to find, which is a bummer since he needs blood draws every month to make adjustments to his meds for hypothyroidism. This past attempt was three pokes, a blown vein, and three of the higher-up nurses attempting to help get a good draw. You can be praying for his veins to somehow be easier to find and draw blood from. It's a hard day when we spend an hour in the lab with a sad, screaming baby.
His labs did show his levels were higher than necessary, so we are able to back off the meds a bit, which is good!

Yesterday we saw an opthalmologist (eye doctor), per the recommendation of the Down Syndrome center here. Babies with Down Syndrome are at higher risk for vision problems. At his appointment, we learned Simeon is far-sighted (the less common issue, as seems to be the trend for Sim) and will likely need glasses around a year old, if not sooner. His low muscle tone also affects his eyes, and his eyes cross and wander some. That problem can self-correct, but if it does not, he may need surgery to correct the muscles surrounding his eyeballs. His tear ducts are also clogged, another problem that can self-correct, but will require surgery to fix (with a stent to train the duct to stay open) if it still is a problem in a few months. The clogged ducts have been contributing to his goopy eyes, since his eyes have no way to flush bacteria out.

His heart is holding steady, as we see in his echocardiograms at his cardiology appointments. We were scheduled for intensive testing in late August, where they will put him under anesthesia and use a catheter to monitor pressure and blood flow. This will give the doctors and surgeons a better idea of what they would like to attempt for his first surgery hopefully sometime in October. They will be trying to assess whether his heart can handle the pressure of wiring his heart to work with an underdeveloped right ventricle, or whether they will need to attempt to wire his heart to function with only the left ventricle. Each path would have its own risks, and affect the possibilities for surgeries in the future.

Our chunker is over 13 pounds, and seems to be out-growing his clothes faster than I can pull the next size out of the box. He was measuring 99% and 88% for height and weight of babies with Down Syndrome! Head control is getting better, he is tolerating tummy time a bit more when it is on Mama's chest, and

Feeding therapy is going ok. He still only takes 5-10ml by mouth once per day, and his other bottle is usually only a few ml. He has lost his baby suck reflex, and it seems to tire him so badly to suck and swallow that we were given an insert for bottles that enables him to just mash the nipple in his mouth to get milk instead of having to coordinate sucking and swallowing. Our therapist scheduled us for a swallow study, where they will attempt a bottle feeding behind a machine that will allow them to see where the liquid is going when he swallows and if any aspiration (liquid going into his lungs) is taking place.

We have an appointment with audiology this week, to monitor how his hearing is doing. Babies with Down syndrome are also at higher risk for having things wrong with their hearing as well, so we were referred to audiology by the Down Syndrome center, just to keep an eye on things and hopefully catch things early if there is something wrong.

I am weary.
What people get in occasional updates is our life every day.
Someone saw me hauling around all his gear and hooking up his G-tube to feed him the other day and said, "Wow. You do that every three hours?" And it hit me just how tired I am. How much effort and supplies and work there is to take care of him. We don't get to check out from it. It's all day and all night. Every day. The prospect of doing this long-term is overwhelming. My mama heart struggles with loving this baby when I it feels like such a real possibility of losing him.

Ways to pray right now:

1. For endurance.
Appointments. Living away from home. G-tube care. Still continuing to learn who Simeon is and what he needs. Being in general newborn stage of life. It's all a lot.

2. Grace and peace.
All the options of how Simeon's situation goes are hard. Heart surgery. Him not making it. Him living a whole life needing special, intensive care. Unknowns are hard. And every path feels hard and overwhelming.

3. Healing.
We are still praying for total healing. For his chromosomes, his heart, his thyroid, his eyes. Every little piece of his body seems affected by his Down Syndrome, and we are still praying so desperately for God to heal Simeon completely.

We love you all. Thank you for supporting us, praying for us, and loving our family so well.

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Emma Wells posted a new update:
8 months ago

Update #11

One cardiology appointment turned into four hours yesterday, getting an echocardiogram and talking with cardiologists and our nutritionist. We went in expecting a routine check-up, and ended up having some hard, nitty-gritty conversations.

Simeon's oxygen levels are looking good enough that we are weaning him off of it during the day, and we will continue to monitor him a couple times a day to see how his body is doing. Today was the first day I was able to pick him up and walk around without having to lug around his heavy oxygen tank too. A victory in my book.

Little chunker is gaining great weight. We had been giving him a concentrated mix of formula, but will adjust it to be the normal dosage now and see how he does! He has been sleeping 12 hours at night and not waking at all to feed, so we will try to begin spacing out his nighttime feedings to see if he is able to drop one or not.

We chatted for the first time with a specialized single-ventricle cardiologist. With the combination of defects in Simeon's heart, they are thinking that his surgery may need to rewire his heart to function with a single ventricle. The right ventricle in his heart is so underdeveloped, they do not believe it could withstand enough pressure to make it functional if they attempted to do surgery to repair it.

There will be more extensive testing done probably at the end of July or August. Simeon will be put under, and they will do a catheter procedure to look at and measure all of the pressures and blood flow in his heart. At that point, they will hopefully have enough data to decide what route and timeline for his first open heart surgery.

"Quality of life versus quantity of life."
It's never a conversation you want to have about your baby. The single-ventricle cardiologist informed us of many of the risks associated with any route for Simeon. His Down Syndrome adds another layer of hardship for his body to overcome. Babies with Downs can have less/smaller veins and arteries going to their lungs, and the pressures from his heart trying to pump could prove too much for his body. With a single ventricle, he would have a heart that pumped out but did not pull back in. That could lead to overload in his lymphatic system and cause leakage in his body. At that point we would need to consider a heart transplant.

It is a hard tension to live in. Having your baby be fine at home, but knowing his heart is actually tremendously broken. Not knowing if you have this special needs child for a lifetime or only a few months. Believing and praying for miracles and for a successful surgery, and recognizing the reality of how much his body would have to overcome if things stay the same. The seesaw of emotions and potential outcomes is a lot.

So we'll try to take it one day at a time till July or August when we have more information and decisions to make.

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Emma Wells posted a new update:
8 months ago

Update #10

It's been a while.

Firstly, we have cherished every single prayer made on our behalf and appreciated every single dollar donated to help support our family. We have felt your love so heavily.

Things went so quickly once we headed down the road toward discharge, that here we are almost two months later before I have my thoughts together, and time enough, to post an update.

Simeon got his G-tube (a little plastic tube near his belly button that goes directly into his stomach) and we were discharged a few days later, on May 2nd. He was in the hospital exactly 4 weeks from when he was born. Leland and Veil were thrilled to have Simeon home, and we captured such sweet moments of them getting to meet their little brother for only the second time in his life.

Having our whole family under one roof has been the best. Our three babies being together, and being able to have Connor and I work as a team has been so helpful in dealing with all the hard and overwhelming things.

It took us several days to learn to do everything to care for him ourselves - G-tube care and feedings, changing the dressings, medications, monitoring his pulse and oxygen levels, weighing him and making sure he is gaining weight, attempting bottle feedings, and establishing a good eat, wake, sleep routine - but after a week or two of being home all together, we settled into a good routine and we feel we're getting the hang of everything with his care now. We have done our best to include Leland and Veil in taking care of him, so they help us give him his meds, turn on and off his G-tube feedings, shake up formula bottles, tell us when he's fussing, help bring us diapers, and they like to watch on the monitor when he's napping.

Simeon is currently on a med for his hypothyroidism, a blood thinner and aspirin to make sure his stent doesn't clot, a med that helps his body to clear extra fluid since he was getting wet in his lungs due to how his heart is currently wired. He had a round of antibiotics a couple weeks ago for what looked like an infection around his G-tube site, and is currently on a week of eye ointment since his eyes have been goopy. Luckily his regular meds can all be given at the same time, so it makes it a bit easier to remember everything!

Oral feedings are still minimal, which isn't too abnormal given his Down syndrome low muscle tone, and a heart that tires incredibly quickly. We have begun working with a feeding therapist to make sure we're setting him up to continue developing the correct muscles and reflexes. We are shooting for a couple bottles a day, but he usually only takes about 5-10 ml per bottle before getting tired.

We are still working with an endocrinologist for his thyroid, a feeding therapist, his general pediatrician, a nutritionist, and we will begin physical therapy soon! We work closely with his cardiologist, and cardiology is keeping in touch with the surgery team that will do his open heart surgery when the time comes.

There are still many unknowns with what next steps and end goals are for his heart. His unique combination of defects still makes the surgeons unsure what exact road to take to make his heart more functional, and there is no way to know how his body will respond to their attempts. We were first given an estimate of his first surgery as early as August or possibly July, but recent estimates have been more like October. They want to wait till he is as big and strong as possible without waiting so long that the pressures in his heart begin to change and put him at risk for heart failure. We will be staying in Colorado until his first surgery.

What we are praying for:

Complete healing and restoration of his heart. That we will go in for a scan one day and it will be totally normal and completely healed by Jesus. Every single little thing can make a HUGE difference in the heart world, so seeing God answer in huge miracles and in little miracles matters so much.

Endurance. It is a long road ahead of us. The days are long. The amount of care Simeon needs on a daily basis is mentally and emotionally taxing. Appointments are once or twice a week at this point, and a 45-minute drive each way. Taking care of Leland's and Veil's hearts requires effort in the midst of busyness and overwhelm. Making sure Connor and I are having intentional relaxing time and intentional conversations is also important. So we're praying for grace and patience and endurance in all our family relationships as well as what is being required of us medically for Simeon.

For his chromosomes to be made whole and perfect. Trisomy 21 (Down syndrome) is a chromosomal disorder, and so many things in his physical body are affected by it. We know God knit Simeon together in my womb, down to his very cells and DNA and chromosomes. We will love and cherish and fight for Simeon, no matter how God answers. We will believe he is a gift to our family. But any broken thing, we will pray for God to heal!

His oxygen levels to improve. He is currently on the smallest amount of oxygen you can be on, mostly just to remind his body to breathe while he's sleeping. Once we can drop the oxygen altogether, we will be able to hold just him, move around with just him. The oxygen tank needing to be within a few feet of him wherever we go makes it feel very much like a ball and chain. Getting rid of his oxygen will feel so freeing!

We love you all! Thank you for coming along on our journey.

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Emma Wells posted a new update:
10 months ago

Update #9

Little man is doing well. It's always an adventure in the CPCU (cardiac progressive care unit) - lots of waiting, making sure all his monitors and sensors are working, and watching him sleep 99% of the time. He is still pretty stable and we're all just learning what he needs to help progress to his next little steps in each area.

We were not expecting to be discharged as soon as it is looking like it we may be...so Connor had to make a run down to Lubbock with his mom to grab a bunch of our baby supplies. Yesterday we had our first day with neither of us being at the hospital with him, since Connor was driving back and I had come down with a cold I didn't want to share with Simeon. We can't do a whole lot for him while we're at the hospital, and the staff and nurses have taken perfect care of him, but we still prefer to have one of us there caring for and snuggling our sweet little guy. Glad I'm feeling better today to head up and be with him for the afternoon.

Simeon's oxygen levels were dropping off and on a bit for a couple of days, but he seems to be fine being completely off oxygen today. His nurse has been the sweetest, giving me great updates when I've called to check in on him.

He has not been gaining as much weight as the team would like him to, so his feedings have been increased just a bit to see if that helps. He is still being fed through his feeding tube every 3 hours, with opportunities to try the bottle when he is awake.

Sleep still wins the battles almost all the time. We thought once he was off the prostaglandins that he would perk up a bit, but he is proving to be a very sleepy baby. We cherish the minutes his little eyes are open and looking around.

Oral feeding is proving to be a feat with him being so sleepy and his lower muscle tone, so we will likely have a G-tube placed (a tube going straight into his stomach next to his bellybutton) in order for us to be discharged.

They will look at the anatomy of his stomach and digestive system tomorrow morning to make sure everything looks good, then we will probably get the G-tube placed sometime over the next few days. Once the G-tube is placed, Connor and I will have to take a class to learn how to feed him through it and care for the G-tube properly. When we are close to being discharged, we will have a 24-hour period where we do all the care in the hospital to make sure we will be able to care for him at home, and the nurses will be on hand to help direct us if needed. The G-tube was somewhat of a surprise to us, so we're still wrapping our minds around what life at home with him will kind of look like.

All in all, things are going well. Falling in love with this sweet addition to our family, and cannot wait for us to be all together soon!

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Emma Wells posted a new update:
10 months ago

Update #8

We've had a busy week, in a good way!

Simeon is now 2 weeks old, and everyone is still smitten with his sweet chubby cheeks and violent baby sneezes.

He had a stent placed to keep his valve open on Friday. The procedure was successful! But the doctor who placed the stent said instead of contracting once off the prostaglandins, his PDA (pulmonary ductus arteriosus) grew bigger while she was placing the stent...which isn't supposed to happen. She's never seen or even heard of it happening. So the stent moved down into another part of his artery in the middle of the procedure, and the doctor had to place another, slightly-bigger stent in the correct position. But all his ultrasounds and echocardiograms since then have looked clean and good, which is a great thing! Everything is healing well and still where it needs to be. The team will all just keep a close eye on how his body responds to procedures in the future!

Sim has done a great job coming off his prostaglandins, though he still seems to be a pretty sleepy, content little baby most of the time! He has been having more frequent periods of time trying to open his eyes and look around, but then settles back into his naps.

The team thought he was doing well enough that he was moved Monday from the CICU (cardiac intensive care unit) to the CPCU (cardiac progressive care unit), which is one step closer to going home. That room has more space and its own bathroom and shower, which Connor has appreciated with all of his overnight stays at the hospital.

We have been working to get his feedings from his tube more consolidated. They were being pumped on a pretty continual drip, and now he gets his appropriate amount of formula in 30-minute windows every 3 hours. We are working with the speech therapist to get suckling on a bottle down, but he is still sleepy and easily-tired so he only tries for a couple of minutes at a time. Signs are there that he can latch, suckle, and swallow well, so it seems to be just a matter of building the habit. If he cannot get it down within a few days, he will likely have a G-tube placed in his stomach to be able to bring him home.

He is completely off oxygen and breathing so well on his own. Due to his Down syndrome, he is expected to have lower muscle tone, but the amount of moving and strength he is capable of has been so encouraging to both us and his therapists!

Many teams of doctors and specialists have visited over the past several days, including endocrinologists, genetics specialists, physical and speech therapists, as well as cardiologists and his catheter doctor. Everyone is encouraged by how well he seems to be doing, and we are looking at bringing him home to my parents' house here in Colorado some time next week!

We cannot believe this is where we are, since we delivered him only two weeks ago unsure if he would make it. Praise God from Whom all blessings flow. Thank you for covering us in prayer, and for fighting for Simeon with us!

Please continue to pray over his heart, his chromosomes, and over our family as we seek miracles and God's glory in Simeon's life.

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Emma Wells posted a new update:
10 months ago

Update #7

Leland and Veil got to meet their brother for the first time today. They are allowing monthly sibling visits, so we got them approved for their two-hour visit today before we dive into any procedures for Simeon that might make it harder for them to snuggle and hold him.

They drew pictures for him that we hung up, they both spent time holding him, and they ooh'd and ahh'd over how cute he was. And my mama heart got filled up having all my babies in one place.

Simeon is still stable, just living his best little CICU life, being told he's cute by every nurse that comes in his room and protesting being unswaddled every time his diaper is changed. He is now getting formula through his feeding tube, and is still on prostaglandins to keep his heart in fetal stage while we wait for his first procedure.

Doctors and surgeons discussed over the last several days what approach they wanted to take with his heart. None of his heart defects are super uncommon, but his specific combination of heart defects is unique, so they will have to take it one step at a time to discern what is best for improving his heart. His current diagnoses are Tretralogy of Fallot, with an Ebstein valve and coronary sinusoids.

The first step was either a shunt or a stent, and the doctors all told us either one was a perfectly good option in Simeon's case. We have opted for the stent, and are expecting that procedure to take place some time on Friday.

There is talk of bringing him home. Which is a HUGE, unexpected thing...since we were told going in that he would almost certainly need a heart transplant that would require him to not leave the hospital for possibly six months or more. We weren't even sure if we would leave the hospital with a baby, and things are playing out so differently than we expected, so all of our baby stuff is still at home in Lubbock - a good problem to be having. It has been a roller coaster of emotions adjusting to all the changes as we've chatted with his team.

Heart surgeries are still a big deal with certain levels of risk, but we are so thankful to be here. This stent will be the first step, he will recover in the hospital and we will make sure he is stable and able to leave the hospital - then we will wait for 3-6 months till his next surgery. Our family will likely be staying in the Denver area during that time, to have follow-up and be monitored at the hospital here with his team of doctors.

Thank you for coming along with us on this journey. Thank you for your love and support and prayers. We serve a big God. And we always have hope.

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Emma Wells posted a new update:
10 months ago

Update #6

Simeon has had a couple of busy days.

He was diagnosed in the womb with HRHS (hypoplastic right heart syndrome), pulmonary atresia, tricuspid atresia, and coronary sinusoids...but his echocardiogram post-birth showed an opening between chambers they thought were completed blocked off from one another. An opening or valve there means there is ability for the sides of his heart to disperse pressure better, putting him at lower risk of heart attack or heart failure.

This is a HUGE praise, because now the surgeons and doctors will discuss a plan of action that may include surgery instead of a heart transplant!
His diagnosis has shifted some to Tetralogy of Fallot. We're still learning exactly what this diagnosis is and how it differs from his previous diagnoses.

Simeon had his catheter in his belly button removed, and a PICC line placed in his arm today. That is where they are delivering his prostaglandin and nutrition. He has not received any form of nourishment orally yet, and we are under the impression they will wait to attempt until after an initial surgery is done.

He is on oxygen, but the amount needed has been not as high as expected.

His CTA scan was done today. Everything went well. His body responded well to anesthesia, and they were able to get the images needed to see more thoroughly how the heart is functioning so they can decide what the best steps to take will be. The plan (which is ever-changing in the CICU) is to have his team meet on Wednesday and come to a conclusion on how to proceed.

Initial bloodwork has confirmed his diagnosis of Trisomy 21 (Down syndrome), and we will get more in-depth info and test results probably next week.

I (Emma) went home to my parents' house to spend a couple days resting and healing my body, so that I can come back ready for full days at the hospital. Connor has stayed at the hospital to be with Simeon. It's been hard to have our family all split up, and incredibly hard being away from my husband and newborn baby.

Current policies are allowing only 2 visitors for Simeon, so just Connor and I have been able to see him. They mentioned allowing monthly sibling visits, so we will discuss soon when we may be able to take Leland and Veil to meet their little brother.

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Emma Wells posted a new update:
10 months ago

Update #5

Simeon Palmer Wells was born on April 5th. 7lb 12 oz, 21 inches

Simeon is stable. He's on oxygen, and medication is being pumped into him to keep his heart valves open. Some of his meds make him super sleepy.

We're running a few tests to see the state of his heart. We need to know how Simeon's heart is functioning outside of the womb to be able to decide with the surgeons what the best plan of action will be. The echocardiogram showed something a tad different than what we expected, so we're doing a CTA to verify exactly what's going on with Simeon's heart. This testing will either confirm or change his diagnosis.

We appreciate every single one of your prayers for our family!

God always, always has my best interests in mind even when His way for me is painful, unclear, frightening, seemingly unfair, emotionally difficult, or mentally challenging. - Nanci Alcorn

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Emma Wells posted a new update:
11 months ago

Update #4

The last few nights have been rough. Filled with little sleep and unnatural amounts of fear. So, as much as we wanted Connor to be able to finish one more week of work before Simeon comes...I had to call him yesterday and ask him to come up to Colorado today so we can face this last week before Simeon's induction date together.

Leland, Veil, and I got all cute and color-coordinated for church this morning which felt like an accomplishment at almost 38 weeks pregnant. So thankful our old church community is here near where we're staying with my parents, to be our people and surround us as we venture down whatever road is before us.

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Emma Wells posted a new update:
11 months ago

Update #3

We are currently 37 weeks with Simeon.

Two weeks out from our induction date.
Ultrasound today showed he is a happy, wiggly, growing little boy, which is encouraging!
(My body is feeling it, carrying him like a little basketball on all the bumpy roads to and from appointments.)

I went into false labor at 36 and a half weeks, threw stuff together, called my in-laws to watch the kids, and drove to the hospital with my mom.
I called Connor, who began the mad rush to try to make it from Lubbock to the hospital in Denver ASAP, and then labor totally stalled. I was not dilated at all, and contractions tapered off and stopped. A bit crazy and disappointing, but it gives our little boy a couple more weeks to grow as strong as he can before arriving.

At this point, we're just doing weekly ultrasounds to make sure he is not in distress or showing signs of heart failure. They have learned all they can learn about the conditions of his heart in utero, and we now can only wait till he is born and run tests after birth to see how his heart is functioning outside the womb. That will determine our exact steps after he is born.

The waiting game is a hard one to play, especially when pregnancy is so hard on my body and it currently involves being separated from Connor...but every day gives Simeon a little longer to develop.

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Emma Wells posted a new update:
11 months ago

Update #2

Leland, Veil, and I (Emma) have relocated up near Denver to be close to the hospital where we will deliver Simeon. Both our families live in the area, so we are able to live with my parents while all of this plays out. So grateful for that. We have support, and the kids will have a steady place to be with people they are familiar with.

We are currently a little over 36 weeks pregnant.
Connor plans to stay another week or two in Lubbock to work, and drive up to join us soon.

Our induction is scheduled for April 4th. 39 weeks is supposed to be the sweet spot for babies in need of surgery or intensive-care, so that will be our plan. My body feels more than ready, though, so we will come up with a plan with our maternal-fetal team on what to do if Simeon shows signs of coming earlier than his induction date.

Lots of big feelings as we loaded up our van with the things we deemed important enough to bring with us, not knowing when, or under what circumstances, we will be returning home.

It feels so real now. Never a road we wanted to walk, but the one we're on.

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Emma Wells posted a new update:
11 months ago

Update #1

We are currently 35 weeks, and Simeon is looking happy, wiggly, and growing!
I (Emma) will take our older two kids up to Colorado when we hit 36 weeks, to be near to the hospital in case Simeon decides to make his appearance early. Connor will join us soon after that!
Packing to relocate for a season of life that will last who-knows-how-long is proving daunting. Lists have been made, but zero packing has been done.

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