I told everyone we'd be gone two to three weeks for the Glenn surgery and recovery. We were actually gone just one week!

Duncan's surgery was on Thursday the 8th. He spent the next four days in the PICU, weaning off his breathing aids and IV infusions. Each day we saw changes being made. A line removed here. An IV med stopped there. He was extubated the day after surgery, he got his chest tubes out three days after. His nasal cannula was removed day four. Duncan took all steps forward and none back!

The doctors had told us what to expect, but always with the caviot, “but he's Duncan, he doesn't always follow the plan”. Well this time, Duncan did! He actually recovered faster than the average Glenn patient!

We moved to the cardiac step down unit on Monday. During that time we got all his meds back to his home schedule and learned how to care for him after his surgery. Duncan's stranger danger meant that we spent every night with him. He got to the point where it became hard for him to fall asleep because he knew he was in the hospital. All three of us got little sleep during those nights! But after three days that felt like a week, we were ready to go home!

One of my favorite parts was walking through the PICU and cardiac floor before we got discharged. Duncan waved to his nurses, and we got to thank them for nursing him during this stay and his many pervious ones. Nurse practitioners, pharmacists, fellows, and techs alike had their hand in helping Duncan recover. We said goodbye to them; Duncan doesn't have any more surgeries planned for this year and he hopefully won't need to be hospitalized spontaneously. It was a bittersweet goodbye!

On Thursday, October 15th, we were discharged from the hospital and came home!

“Praise the LORD! How good it is to sing praises to our God, how pleasant and fitting to praise him! The LORD builds up Jerusalem; he gathers the exiles of Israel. He heals the brokenhearted and binds up their wounds. He determines the number of the stars and calls them each by name. Great is our Lord and mighty in power; his understanding has no limit. The LORD Sustains the humble but casts the wicked to the ground. Sing to the LORD with grateful praise; make music to our God on the harp.” Psalm 147:1-7

At home not much has changed with the care we give Duncan, but our mindset has. He is much more stable now that he doesn't have the shunt. We still monitor his vitals, but not as often. His oxygen saturation is higher, and his skin is pinker. He is not allowed to resume full activity yet since he just had surgery, but he is still playing and smiling just the same! We are so so thankful for this miracle!

Duncan has plenty of follow up appointments next month. We will start meeting with his nephrology, urology, and GI doctors to make a plan for his fistula and ostomy. These were things we could never consider until he had a more stable anatomy. Now we can look ahead with expectation!

The Glenn surgery is not a cure, and it doesn't “fix” his heart. But it does give him a fighting chance. It gives us a few more years before we need to consider heart surgery again. We have waited all year to see if Duncan could be strong enough for it, and when it came time, he was! Praise God who has shown us so much mercy and provision! He has held us fast and delivered us in His timing.

“Not only so, but we also glory in our sufferings, because we know that suffering produces perseverance; character; and character, hope. And hope does not put us to shame, because God's love has been poured out into our hearts through the Holy Spirit, who has been given to us.” Romans 5:3-5

Praise

• Duncan has completed his initial recovery from open heart surgery and is home with us again!

• Duncan is doing well at home so far! We are caring for his chest scar and making sure to follow sternal precautions. We don't think he's been in much pain.

• Lord willing, we will home for the holidays! Murray and I are looking forward to the fall and winter season, able to be at home with Duncan for the holidays! This was a privilege we did not get last year.

Prayer

• Please pray against infection! We don't want Duncan's incision site to get infected. We don't want Duncan to catch a respiratory infection or UTI. Single ventricle hearts struggle to fight infection, even after surgery improvements.

• Pray for us as we settle back in. Duncan is waking up most nights upset, and while it could be a regular developmental milestone , it could also be because of pain. But we don't have the luxury of just assuming he's throwing a fit. Please pray for wisdom and discernment for us as we parent Duncan.

• Before the Glenn, Duncan often had multiple day long periods of vomiting and discomfort. We have tried many things to help with this, but still aren't sure why it happens. We haven't had any vomiting problems since we've been home! Please pray that those episodes don't reoccur!

• One of the things we haven't been able to get to yet is weaning Duncan off some of his medications. With Duncan's new stability, we now have the chance to slowly wean Duncan off of these medicines! He only needs these meds because he is habituated to them. Sometimes the weaning process can be rough, so please pray for a smooth weaning process!

• Please continue to pray for a clear path forward! We waited all year for this big surgery, and now we have hope that we can continue to make forward progress with Duncan!

We went home with this hope in the back of our minds, “What if we just need to wait for Duncan to get stronger to have the Glenn?” At the time he wasn't a candidate, but we said “he's not a candidate yet”.

And praise God! He became a candidate, received the surgery, and is healing quickly afterwards!

I told my family, who has spent the past week with us, this has been the longest week ever. On Sunday, we took Duncan to church like normal, and that evening attended a prayer meeting for Duncan. On Monday, my family arrived and we spent some sweet time at home together. On Wednesday, we came to the hospital and got all set for the surgery. Thursday, Duncan received the second of three reconstructive heart surgeries. On Friday he was extubated, his foley catheter was taken out, he started getting fed, and they began weaning his IV infusions. Saturday he weaned off the inhilation medicine and most of his IV infusions. Today, his chest drainage tubes were removed, his arterial line (a special IV used to measure blood pressure) was removed, and he was taken completely off oxygen. He has two IVs but nothing is running through them. He has a big sternal dressing to protect his chest scar, but there is nothing else on his body out of his ordinary! He is taking his regular oral medicines and eating his regular feeds through his NG tube.

We are so tired from this week! Although Murray and I haven't done anything physically exhausting, we are so tried from the emotional and mental load. But it's bearable. Duncan feels better every day, and we know the results of this surgery will be increased energy and stamina for him. We waited all year for this. And his recovery is going so quickly! All his doctors have said he looks so good. His nurses have noticed that he looks pinker, more oxygen in his blood makes him look healthier! His team at Children's of Mississippi are all so excited and happy for him!

So, what did the Glenn surgery actually do?

Diagnosis and History: Duncan has a single ventricle heart, dexdrocardia, and two SVCs instead of one - in other words, he only has one pumping chamber of his heart, his heart is flipped facing backwards, and he has two major veins bringing blood from the upper body to the heart. The Norwood surgery he received at three weeks old modified many parts of this anatomy, but the biggest change was to allow for mixed flow in his circulation. Mixed flow means he does not have ‘blue blood’ and ‘red blood’ like we do, his is ‘purple’. His oxygen rich and oxygen low blood all mixes in his heart. That’s why the oxygen saturation in Duncan’s blood is low. His sats are 75-85%, and mine and yours would be 95-100%. The other major change during the Norwood was that he was given a shunt - a tiny tube - to divert some purple blood from the heart to the lungs. That was the only way his blood received oxygen.

The Glenn Surgery: Duncan received a Bidirectional Glenn to modify the way blood passes through his lungs. Both of his SVCs were disconnected from his heart and rerouted to his lungs instead. His shunt was removed. Blue blood now flows passively from his upper body to his lungs, receives oxygen, and enters the heart. The blue blood from his lower body still flows straight to the heart as normal. From the heart, this purple blood is pumped back to the body. Duncan still has mixed flow; however, now there is more blood receiving oxygen directly. We have already seen that Duncan's oxygen saturation is higher since the surgery!

Application: Now Duncan has less pressure in his lungs and increased oxygen in his blood, which makes the whole body happy! More oxygen to the brain means faster development. More oxygen to the muscles means more stamina. We are even hoping he will tolerate his feeds at a faster speed (more oxygen to the stomach) so we can train his body to take more food in shorter times, mimicking the timing of more regular eating. We haven't seen Duncan completely recovered yet, so we don't know exactly how this will affect him. But we are so happy that he will feel better than he did with his Norwood once he is recovered!

Our next steps will be to get an echo and transfer to the cardiac step-down unit. Duncan will no longer need ICU level care soon! We want to see him tolerating his food well, with a good echo report and thumbs up from the doctors before we can go home. We're not sure how many days that will be, but I'm encouraged so far!

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Praise

• Duncan is recovering quickly! He wants to get better! Every day we see his progress.

• We are encouraged by my family's visit and support from our friends. The doctors and nurses all offer encouragement too!

• We have not had to take any steps backwards so far. Forward progress!

• Duncan's pain and irratablilty has been manageable. He hasn't been without both, but those moments don't last long and are quickly remedied.

• Today I got to hold Duncan for the first time since surgery! We couldn't hold him while he had his chest tubes in.

Prayer

• Please pray for a continued smooth and swift recovery for Duncan!

• Pray for us as we stay with Duncan in the hospital. We did stay with friends a few nights this week, but now Duncan recognizes his nurses and get scared of them sometimes. Stranger danger is developmentally appropriate! But we want to be with Duncan to soothe and comfort him.

• Pray for my family as they drive home today.

Your righteousness, God, reaches to the heavens, you who have done great things. Who is like you, God? Though you have made me see troubles, many and bitter, you will restore mny life again; from the depths of the earth you will again bring me up. You will increase my honor and conmfort me once more. I will praise you with the harp for your faithfulness, my God; I will sing praise to you with the lyre, Holy One of Israel. My lips will shout for joy when I sing praise to you - I whom you have delivered.

Psalm 71:19-23

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His surgery went as planned! Someone from the surgery team called me every hour and a half to give updates. They were brief, but we got to know what step of the surgery he was on in real time. Murray and I returned to our room and took showers, able to take our time getting ready.

My family came to the hospital and spent the day with us! Throughout the day we saw people from Duncan's care team, everyone excited for him and asking about him. We met up with some old friends too, including Dr Shores, Duncan's original cardiologist. It was nice to see people through the day.

On surgery days, we start off optimistic and energetic, and slowly throughout the day begin to feel less comfortable. Everything went well with Duncan, it just took a long time. It's a long time to be away from your baby, knowing they are vulnerable. By the time we got report from his heart surgeon, the sun was going down and I was anxious to see my boy.

But that moment always comes. The moment when your wait ends, you can hear from his doctor and be welcomed back into his room. Duncan went into the OR at 7:30am and we got to see him again at 7:30pm. Twelve hours later, we can touch our baby again.

Duncan is sedated and intubated for tonight. This is no surprise. The plan is to extubate in the morning and see how things go from there. Obvioulsy the doctors have a more detailed plan, but those are the highlights I'm excited for! While Duncan rests tonight, we will stay with our friends.

It is overwhelming how we have come to this day! A day we thought we'd never see at the beginning of this year. A day we hoped for, but weren't promised. Duncan's strength is clearly a display of God's merciful plan and His listening to the prayers of His people. Praise Him!

“Shout for joy to the Lord, all the earth. Worship the Lord with gladness; come before him with joyful songs. Know that the Lord is God. It is he who made us, and we are his; we are his people, the sheep of his pasture. Enter his gates with thanksgiving and his courts with praise; give thanks to him and praise his name. For the Lord is good and his love endures forever; his faithfulness continues through all generations.”

Psalms 100:1-5

My family traveled with us and we got to spend some sweet time together! We slept in Duncan's room with him, all of us got some good sleep.

First thing this morning, he was called to surgery. We gave him his special bath and put him in the little gown. The surgery team met with us, explaining the procedure and answering our questions. Duncan did not want to be set down in his crib! We held him until it was time to go.

Most of today he will be in the OR. Please pray for wisdom and precision for the surgery team! Please pray for us as we wait. We will send an update at the end of the day!

“But the eyes of the LORD are on those who fear him, on those whose hope is in his unfailing love, to deliver them from death and keep them alive in famine. We wait in hope for the LORD; he is our help and our shield. In him our hearts rejoice, for we trust in his holy name. May your unfailing love rest upon us, O LORD, even as we put our hope in you.” Psalm 33:18-22

On Friday, our surgery got changed from Monday to Tuesday. This was because a different baby needed to have surgery very soon. We know how nerve wracking it is hoping to get surgery in time, so we are glad they will go first! I know no other details, but we can pray for that child.

On Saturday, Duncan's test results from the pediatrician came back! He does not have any respiratory illnesses, but he does have a UTI. I feel a little silly for not getting him tested sooner. Duncan was obviously in pain last week, and since we didn't know why, we couldn't directly help him. Thankfully, he has been doing much better since Thursday. Our pediatrian prescribed an antibiotic for the UTI, and we started giving it as soon as we could. Duncan hasn't had a fever or pain since Thursday, but we want to make sure the UTI is completely treated.

This morning, we were all packed and ready. Our plan was to go to church, come home, pack the car, and drive to Jackson this afternoon. But that was not God's plan. Before we left for church, the surgery team called us and said that due to Duncan's confirmed UTI the surgeons want to move his surgery to Thursday of this week. They want to make sure the antibiotics run their course and Duncan is fully healed before the surgery. Of course we want the absolute best chances for Duncan's recovery. But it was also difficult to pivot our plans so quickly! No matter the inconvenience, we will do what is best for Duncan.

Our new new plan is to drive to Jackson on Wednesday to be admitted. Duncan's Glenn procedure will be first thing Thursday morning.

Thanks for your support! Please pray for the UTI to be completely healed and for the little details to fall into place!

We are surprised how soon it is! But we are very thankful to be on the schedule and to know that Duncan will have the Glenn for sure! We will be admitted on Sunday afternoon to prep for the surgery.

Duncan has had a rough couple of days. He has been uncomfortable and fussy, sometimes unable to sleep, sometimes in pain. We aren't really sure what is s going on. At home, we have done all the remedies we can think of. Today, just to make sure, we got Duncan tested for respiratory viruses and a UTI. If these tests come back negative, then we will go to the hospital as planned! If they are positive, plans may need to change so he doesn't go into his surgery with an infection. We are hoping we can keep the original surgery day!

Yesterday, September 30, was officially one year since Duncan had his Norwood surgery! We are so thankful for our Lord who has sustained all three of us through this journey! Now, a year later, we hope to get the next step surgery since Duncan is looking strong enough!

“For you have been my hope, Sovereign LORD, my confidence since my youth. From birth I have relied on you; you brought me forth from my mother's womb. I will ever praise you. I have become a sign to many; you are my strong refuge. My mouth is filled with your praise, declaring your splendor all day long.” Psalm 71:5-8

More updates to come as we head into an exciting week!

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We were admitted Monday morning and discharged Wednesday afternoon!

Tuesday evening we put Duncan to bed and he slept well, his body still filtering out the sedatives. We got some good sleep too! We loved being back in the ICU - we had our old nurses, doctors, nurse practitioners, and the like. They even put us in our old room! Every time Duncan woke in the night, his night nurse was there by his crib, soothing him. His good sleep was such a relief after having a rough night on Monday!

When we woke up Wednesday, we didn't know what was next. We were so focused on getting through the cath lab that we hadn't asked any questions about discharge! Thankfully, we got all the doctor consults and conversations in before we left. We even got to talk to a GI doctor about Duncan's consistent throwing up and discomfort. This has been an issue since July, and we haven't found a concrete solution. Our doctor had a gentle approach, not wanting to load Duncan up on medicine or change everything at once. He switched Duncan to a pedatric formula and advised a new feeding method including a bag to release stomach pressure. He will follow us for the vomiting and the ostomy reversal journey!

The heart doctors had their meeting. Dr Frandsen told us that everyone agreed Duncan is a Glenn candidate! The blood pressure in the lungs is just a bit high, but within range. He prescribed a new medicine to lower the pressure in Duncan's lungs and prepare him for the Glenn. We talked to Duncan's heart surgeon too, having a preliminary conversation about surgery. We are so thankful the same surgeon who gave him the Norwood will be giving him the Glenn!

They advised us to go home and come back to clinic at least once before having the Glenn. Murray and I are itching to schedule it! We want to be home for the holidays with Duncan this year. Lord willing we can get on the surgery schedule soon!

Among all the consults we had on Wednesday, we also got to see so many friends! Duncan's nurses came by to say hi and see how much he'd grown! It was so sweet to be with them a year later, smiling over how strong Duncan is. They saw him at his birth, at his weakest before transfer to Arkansas, and when he went home because he was not a candidate for surgery. This visit was full of celebration and joy!

The one thing Duncan hasn't made much progress on is eating by mouth. Compared to the miracle of his heart strengthening, it's a small thing. But it's been frustrating and discouraging. For over half of Duncan's life, I have been trying to teach him to eat by offering baby food. Now at 12 months old, he still won't open his mouth for a spoon. We talked to speech therapy and Frandsen and Friends, and they all said the same thing. Keep working on it, it will come really slow. This is normal for babies whose lives begin like Duncan's.

It's good to know that I'm not doing anything wrong. But it's hard to hear that this road is much longer than I originally thought.

Wednesday afternoon, I sat in the hospital lobby, waiting for Murray to bring the car keys so we could load up and go home. I watched all the moms walking by. Some moms had children walking and talking beside them, nothing apparently wrong. Some moms pushed wheelchairs. Some of the kids on wheels only had an IV, while some had braces on multiple parts of their bodies. I saw a young couple carrying a car seat, a clear tube coming from the car seat to the dad's backpack. Their baby was on oxygen. I noticed the gear each mom had, tailored to her child's needs. I realized, I'm not alone.

One of the hardest things about coming home has been fighting the natural tenancy to compare Duncan to the children around us. Praise God, most of our friends here in Laurel have healthy babies and children! I'm thankful most of the parents I know have thriving children. And I don't want to belittle their struggles just because we've been through something uncommon and severe. But it is hard sometimes, seeing babies put chunks of pizza in their mouths. Watching other babies crawl. Knowing that I'm the only mom out of my friends who has a child with an ostomy bag. With a feeding tube. With medicines due around the clock.

As we loaded up the car in front of the hospital, Duncan watched us from his car seat on the sidewalk. I don't remember what I was doing before the woman came up to me, she took me by surprise. “Does your baby have a feeding tube?” she asked. I said yes. She began unpacking the backpack in her hands. Her mom and son got a few paces ahead before they realized she had stopped. “I'm giving you this bag, we don't need it anymore. This backpack is modified for a feeding pump and bag! You hang the bag here, the tubing threads through here,” she continued to explain as she removed her person belongings from it. Clearly this was a spur of the moment decision. My gut reaction was to kindly decline her gift, but she was right, I need gear like this. “My son had a feeding tube for a few years, we're off now. I know how it is. The nights are long, but the years are short! You'll be okay, it will be over one day.”

And then she was walking away, holding a paper bag we gave her for the backpack contents. Her son trailing behind, maybe about four of five years old. I stood there clutching this neon orange backpack, tears welling in my eyes. She saw me. She knows what it's like.

Many people have been encouraging and supportive of us, but few have actually walked it. This never discredits their loving support or advice. But it does make a difference if you've lived it and come out on the other side. I hope to be able to encourage medical moms like this one encouraged me. There's actually a good number of us out there. And while we're thankful to be a minority, thankful most children have healthy bodies, it can be isolating when your struggles are so rare.

The Lord has shared the news about Duncan to so many people! So many of you are praying for him and following our journey. And now, so many more are aware of the challenges and rewards of having a child with birth defects, the struggle against the tide to meet milestones. To get off medicine. To become strong enough to have life extending surgery. You see us too, and we're so thankful for your support!

We will send an update when Duncan's Glenn gets scheduled! Thank you for your unfaltering prayers! God is answering, quietly, slowly, and faithfully.

“O Lord, you have searched me and you know me. You know when I sit and when I rise; you perceive my thoughts from afar. You discern my going out and my lying down; you are familiar with all my ways. Before a word is on my tongue you know it completely, O Lord. You hem me in-behind and before; you have laid your hand upon me. Such knowledge is too wonderful for me, too lofty for me to attain.”

Psalm 139:1-6

We were taken to a triage room at 7:30 this morning. Duncan was given a special bath and cute gown. We got to be with him right up until he went to the cath lab!

We got calls from the doctors in the OR giving us updates. The procedure went well! They did not need to do any extra interventions. They even told us from the OR that Duncan's numbers were looking good.

Murray and I got organized and waited for Duncan to return. After he got back, he was very groggy. He was still on a little sedation so that he would lay still, so we let him nap for a couple hours. Murray and I got a rest too, napping well after getting some lunch.

A few hours later, his nurse woke him up to check on him. He was a little uncomfortable, so we gave Tylenol. They turned off his IV sedation and let me hold him! He's pretty sleepy but he's acting like himself again!

The doctors will have their usual conference tomorrow and will discuss Duncan and his cath results then. Everyone we've talked to so far today is hopeful Duncan can get the Glenn!

We will learn more tomorrow. We may go home this week, or we may even move ahead with the Glenn during hospital stay. We won't know until everyone talks together in conference tomorrow. We want what is best for Duncan, and are excited that we could possibly get the surgery done soon!

We are so relieved the cath procedure went well. Duncan was stable and bigger than he's ever been when getting this procedure. We were nervous going in because there are always risks with procedures like this, and in the past his recovery from cath labs has been lengthy. This time was very different! We are praising God for a smooth experience! Thank you for your prayers and encouraging messages!

Praise

• We are so thankful that we got to spend the last 4 months at home (mostly) with Duncan.

• Duncan's heart has strengthened significantly over the past few months, opening paths forward that had been shut. We're thankful to be seriously considering surgeries that had been ruled out due to poor heart function.

• We're thankful for Duncan’s care team at UMMC. They know Duncan well, so we are glad he's in good hands.

Prayer

• Pray that Duncan’s cath procedure goes smoothly today, and that his cath numbers look good.

• Pray that Duncan’s recovery will be speedy and that he'll be ready to return home by the end of the week.

• Pray for his cardiology team to have wisdom as they discuss his options and make a plan moving forward.

Here's a short walk down memory lane, and information about this upcoming Sunday when Duncan will be baptized!

Here is Duncan the day he was born! He was born in an operating room at the Children's Hospital of Mississippi. We had a planned c-section so that multiple teams could be present. The doctors were not sure how severe Duncan's condition was, so minutes after he was born he got a proper echocardiagram. He was also intubated to give his heart a rest and help his lungs work correctly. The echo revealed that he was not as unstable as they thought, and he did not need surgery that day! We were so thankful. However, once he was born they discovered that he had an imperforate anus, so he did have surgery the next day to create his double barrel coslotmy. For a week we talked and sang to Duncan while he lay intubated. About two weeks after birth, Duncan had a procedure to help control bloodflow to his lungs. This helped him be stable for another week before his big heart surgery. On September 30th, Duncan received the Norwood procedure.

At one month old, Duncan was extubated! He was eating breastmilk through his NG tube. We had held him a few times! He would take a paci, and we were getting a little more comfortable with touching him and helping with his care. We even got to take Duncan outside for the first time!

At two months old, Duncan was IV free! We held him often. We changed his diaper, dressed him, and offered him a bottle on our own. I started learning more and getting more involved with his ostomy care.

Three month old Duncan loved his paci, his stuffies, and being held. He was being fed in bolus feeds and even nursed some! He loved a good strong swaddle. He listened to lots of Christmas jazz and Tchaikovsky’s Nutcracker! At the end of December, he suffered a near fatal event that seriously affected his heart function. This changed our plans about the next heart surgery. We spent Christmas in Jackson at Duncan's bedside.

Happy New Year! January was a month of revocery and stabilization. We held our four month old and played with him as best we could. He even started sitting up! Every echo revealed that Duncan's heart was not squeezing strong enough. We prepared to transfer to a hospital that could perform heart transplants. On January 21, Duncan was flown via helicopter to Arkansas Children's Hospital.

At Arkansas, Duncan went through the tests to be listed for a heart transplant. The weeks in Arkansas were hard. Duncan's heart was obviously overcompensating. As time went on, he was extubated from his cath procedure (this procedure was for gaining numbers for heart transplant listing) and we were able to hold him. He wore more monitors and had more IV lines. But we got in a good routine with him, and even started bathing him ourselves! We read lots of books to Duncan, and did a lot of play sitting up in his bumbo chair. We even took him outside a few times!

After being denied heart transplant candidacy due to complications with his ostomy, Duncan was flown back to Jackson. We said goodbye to nurses and doctors in Arkansas, it was bittersweet. Coming to Jackson felt like coming home. The doctors at Children's of Mississippi looked into other options for transplant, but it became clear that heart transplant was not the solution for Duncan at that time. Duncan spent more time sitting up, and even tried baby food! Our six month old enjoyed contact naps and playing peekabo. A bouncer was a staple in his room, he even took naps in it!

At seven months, we enjoyed getting giggles out of Duncan! He was playful and curious. He recognized us in the mirror and was excited to see every friendly face! We kept trying baby food, usually resulting in a mess! We celebrated Easter together and slowly weaned Duncan off his IV infusions so he could go home. With no surgery options available, we prepared to take Duncan home on hospice care. Not knowing how much time we had with Duncan, we were excited to finally bring him home.

Duncan turned eight months old at home! He came home with his NG tube for feeds and a PICC line delivering a heart medicine. He also wore an oxygen monitor. The first two weeks he spent adjusting, he had never had access to such a large space before! We took him outside every day. He enjoyed playing on the floor with us and sleeping uninterrupted for the first time in his life! He really started taking leaps developmentally too. We praise God for this blessing!

At nine months old, Duncan was curious and playful as ever! We took him for walks and sat in the yard on cool days. We continued trying baby food. I stated holding Duncan on my hip as I walked around the house with him! We were in and out of the hospital in June due to a developing milk protein allergy and a nasty UTI. We also visited the ER every now and then to replace his NG tube. June was full of unexpected hospital admissions, but praise God we were treated and discharged to come home every time!

Ten months old! Duncan was sitting unassisted and rolling around in his crib! We changed how we swaddled him at night and he quickly learned how to roll! We tried desperately to sleep train him and suffered the consequences - lack of sleep for all of us! But he was in a good rythym so we had the freedom to make normal parenting decisions. We brought him to church on Sunday for the very first time. It had been too long since Murray and I had been with our church family, it felt like coming home! Our cardiologist at UMMC said that Duncan’s heart was strengthening, and suggested we could try weaning him off his IV infusion! We were admitted into the hospital for this and it went well! Duncan got his PICC line taken out! Following this step, we started looking at the next major heart surgery, the Glenn. This had been ruled out as an option after his event in December, and we were excited that it was back on the table!

At eleven months old, Duncan sprouted a tooth and a half! He made all sorts of noises from whining to babbling to laughing to screaming. He only needed to wear his oxygen monitor at night, so during the day all he had was his feeding tube! Parenting Duncan felt like parenting a normal baby. We enjoyed the freedom of having no IV! We took a walk on the days it wasn't absolutely blazing outside, and enjoyed bringing him to church on a normal basis.

Happy Birthday Duncan! Our sweet boy loves throwing toys from his high chair, teething on anything he can fit in his mouth, and waving to friends! He is very stable at sitting up on his own and getting stronger at tummy time! He has very expressive faces, from concentrated to curious. He loves his hospice nurses, private duty nurses, and clinic nurses. He is one heavy boy and always wants you to be near, but not in his personal space. He loves watching children and playing chase (while being held)!

Upcoming this month we have a cath lab procedure scheduled to asses his readiness for the Glenn surgery. We are so thankful Duncan is strong enough to start looking at a surgery that could really benefit him! Miracles are often thought of as big, sudden, dramatic events that can only be attributed to divine intervention. In Duncan’s life we have seen the Lord work just as powerfully - but in a slow, quiet, subtle way. Duncan’s heart function seemed irreversibly weakened with no clear path forward, but after months of waiting Duncan’s heart is the strongest it's been since his event! Praise the Lord for his mercy and power!

On Sunday, Duncan will be baptized at Westminster Presbyterian Church as a covenant child of believers. He belongs to God, and is under the same care God gives his people. This baptism is not a declaration that Duncan believes in Jesus, but a sign that if he does believe, all the promises God offered in Christ will be his also! The service will be available to watch on livestream at 10:30am CST. Here is the link if you want to watch it!

https://www.youtube.com/channel/UC4kdqi0i5y4VPQfjzz7YeXg/live

May was a sweet month of firsts! Duncan's first time in his home was the biggest highlight! Of course he spent a lot of time there with me while I was pregnant, but this time he got to see it for himself. We enjoyed Mother's Day and a visit from my mom and sister! They helped get us settled in since we'd been gone for so long. 

Duncan had his first pediatrician appointment at South Central Regional Medical Center! It was so sweet to go into our local hospital for a wellness check up. We reviewed vaccine schedules and growth charts, and enjoyed talking about age appropriate baby things. We also had our first at home medical mishap: Duncan's NG feeding tube came out! We went back to SCRMC to the emergency room and had the best care thanks to our pediatrician making a plan for us. Duncan got many smiles from the ER nurses and had his tube placed correctly. We did have to explain why Duncan's vitals look different from the normal baby's, and many of the nurses were curious about his heart defect. Regardless of the complex details, Duncan acted like a regular little guy - smiling at friendly faces and playing with toys while waiting on x-ray. It was nice for Murray and I to make the trip by ourselves and create accurate expectations for any future ER visits with Duncan. 

Not but two days later, we had another mishap! From about five feet in the air, I dropped Duncan's IV pump and it fell to the ground! This pump controlled the continuously infusing heart IV medicine that Duncan came home on. When it fell, the cartridge came out and it started beeping. The message on the screen said “infusion stopped”, but it might as well have said “mama's heart stopped”! I was so worried we'd have to go back to UMMC. We made a few phone calls, and within an hour the on-call hospice nurse arrived and fixed the issue. There were no continuing problems and Duncan showed no change. We are so thankful for the Forrest General Hospice nurses who have answered all our questions and provided for all our at home medical needs! Duncan loves seeing them every day and they take good care of us, too. 

Murray's parents came for a visit at the end of May! It was such a sweet time being with them in the comfort of home. They brought gifts and toys for Duncan, and showed us the new children's book they've been working on called Covenants for Kids! Dr. Palmer has been composing this book for a while, and it was so exciting to see it fleshed out and beautifully illustrated! We can't wait to get our hands on a physical copy to read to Duncan. If you're interested in this gospel-centered, child-oriented resource, I'll leave a link to the book here:

Covenants for Kids: Jesus is the Sum of Everything

In June we started having more people over to our house to visit and meet Duncan. We were getting comfortable with having visitors - after a good hand wash and sanitize, healthy visitors enjoyed joining us in the living room and seeing Duncan at home! We were in a rhythm with our daily chores: mixing milk and drawing up medicines. Duncan was well adjusted to home and slept great in his room! 

One night when we went to give routine medicines to Duncan, we noticed that instead of poop in his ostomy bag, there was blood. Concerned, we texted a picture to our UMMC nurse Madeline. She told us to stop feeding Duncan and come into the ER at the Children's Hospital. We tried not to panic, and spent the next two hours packing up for a hospital stay. 

In these moments of panic and fear, we often feel like jumping into action. I remember when we got a call in December that Duncan had been intubated emergently; all I wanted to do was rush over to the hospital. However, in these moments what really matters most is falling at the feet of Jesus. None of this surprises him, none of it makes him rush or panic. As his child, my biggest need is always to reach out to him and trust him. He gives us these moments as a chance to remember we depend on him! He is in control, not me! On that night at home, before we furiously packed, Murray pulled me aside and we said a prayer of intercession for Duncan and a request for strength. 

Once we were all set, we drove to Jackson and arrived at the ER at 2:30am. The tough part about that admission was that Duncan was acting normal. He wasn't in any obvious pain or discomfort, but we knew something inside was really wrong. In order to admit him to the cardiac floor (where he will always go, even if his medical issue isn't the heart), the ER nurses needed to draw blood for tests. Duncan's nice big PICC line wouldn't draw back because it had only been used for slow infusions for a while. So unfortunately they had to stick him in the arm for an IV. It was tough being back in the hospital holding Duncan down while he cried. But he was the biggest trooper, and went to sleep shortly after his IV was placed. At 7am there was an available bed on the cardiac floor, and we were moved back to a familiar place. Duncan and I immediately took a nap while Dad got our things from the car. 

The rest of that stay was a wild, wild ride! Murray and I slept in Duncan's room with him. Because we stopped feeding him, he had trouble sleeping because he felt so hungry. Usually Duncan is content, so we were a bit unprepared to have a very fussy baby. I now have big respect for parents of babies with colic or extreme fussiness - it really wears you down! The doctors tested Duncan for all sorts of things, from stomach lining growing in the wrong places to treating for ulcers. We eventually started Duncan's milk back, only giving him breastmilk I'd pumped during our stay. However, the blood started back and so we had to return to the drawing board. 

We had planned to host my cousin Raegan that weekend, so I called her and gave her an update, saying that we would be hospitalized for her visit. Being the loving, flexible friend she is, she came anyway and provided much needed encouragement and support for us! She rocked Duncan to sleep and told us about her girls back at home. Her experience as a nurse meant she was completely comfortable in the hospital environment. Her presence was such a sweet blessing from God! 

After all Duncan's tests came back negative, the doctors decided to switch him to hypoallergenic formula in case he was experiencing a milk protein intolerance. And praise God, that was the problem! We had been told Duncan might need surgery, and it turned out that he just developed an allergy common for babies his age! Here was another weight off my shoulders: I felt it was the right time to stop pumping breastmilk. I was making just a little bit of milk each day, and I didn't want to start a dairy-free diet just to make less than half of Duncan's daily intake. Having a solid reason to stop my pumping journey was a godsend. I'm so so grateful I could give breastmilk to Duncan for the first nine months of his life, and I'm so so grateful to be able to put the pump to rest. 

We were discharged a week after admission, and went home with new formula and a few gut-healing medicines. Returning home was so sweet! Duncan perked back up once we got home, confirming my suspicions that he loves his home more than the familiar hospital room. 

Not but three days later, we were rushing back to the hospital! Duncan spent all night throwing up, crying, and having a high temp and high heart rate. On top of this, he hadn't peed and his bladder felt full. All signs pointed to a UTI. Per the advice of Madeline yet again, we packed for another hospital stay. First we drove to the ER at Forrest General in  Hattiesburg, since we could get there sooner than Jackson. They relieved Duncan's bladder, drew blood from his PICC for testing and gave him a dose of antibiotics. We were thankful for this first step towards helping Duncan feel better! But as it will always be with him, he needed to go to the hospital with the heart doctors who know him best. Forrest General put us on an ambulance to Jackson, and we were admitted to the cardiac floor by that evening. 

This admission felt pretty different. It looked a lot the same - we stayed with Duncan, he was fussy and uncomfortable - but the blessing was in the clear diagnosis. His heart was okay. He was receiving antibiotics for his infection. We just needed to wait it out, and wait for Duncan to pee on his own. A few days later, Duncan got his energy back and we were discharged with a new prescription for antibiotics. 

Possibly the worst part of this was that it happened on Father's Day! I wanted to give Murray a sweet celebration, but instead it was another day on the road. He was an outstanding Dad. He sped us to the ER with hazards on, and helped with the fussy baby to let me rest. He talked to the doctors when they came by each morning so that I could sleep. He encouraged me and made Duncan smile. I couldn't ask for a better partner, and Duncan seems to know he's got the best Dad! 

Before we left the hospital, we got encouraging news! Dr Frandsen, the transplant and heart failure doctor caring for Duncan, told us he thought Duncan would do fine without his IV medicine! If Duncan came off this infusion, we could remove the PICC line and the infection risk it brings! In order to do this, we would need to be admitted to the hospital for monitoring. Murray and I chose to spend a week or two at home, and come back to wean the medicine. 

Back at home, we met with both pastors of our home church to discuss the possibility of bringing Duncan to the service on Sunday. Since we are trying our best to keep Duncan healthy, we want to be smart about bringing him into spaces with lots of people. Our church, specifically the deacons, was very accommodating and made us a secluded little spot in the back of the sanctuary. The following Sunday, we snuck in the back and enjoyed being with the body of Christ - with Duncan! At the end of the service, we headed outside where we felt comfortable to see our church family. It was such a sweet reunion for us, and so special to introduce our friends to Duncan for the first time! 

July started off with a bang! I was so excited to celebrate the semiquincentennial, America's 250th birthday! It was our first holiday at home with Duncan. We spent the day visiting friends and enjoying watermelon, cookie cake, and grilled chicken. Duncan was asleep well before the fireworks began, so we skipped that part of the celebration this year. We look forward with hope to the day he can sit on dad's shoulders and enjoy the Independence Day fireworks! 

We scheduled our admission for Duncan's IV wean, and spent the time until then soaking up Laurel. We were able to visit church another Sunday! We have two private duty nurses who regularly watch Duncan so Murray can go to work and I have the chance to visit with friends. Murray and I have been able to rejoin the Bible Study groups we were plugged in with before we moved to Jackson. My heart has been filled! All four pieces of my heart have been put back together - my home, my husband, our baby, our church - bound by Christ. 

Now we have finished our third hospital admission of the summer! It was so different walking in all prepared for a planned admission. Third time is certainly a charm! The goal was to take away Duncan's continuous IV medication and monitor him for changes. Duncan was his little happy self, the medicine wean went pretty well, and Murray and I were able to stay with our good friends, the Easleys. Over the weekend Duncan took a dip, but after some adjustments to his oral heart medicines, he was right back on track. We are praising God for this step in the right direction! Since the IV wean went well, Madeline took out Duncan's PICC line! What a blessing to return home without any IV lines in Duncan. What a wonderful, welcome change it is! 

For Duncan's care, we will continue to see Frandsen and Friends in clinic. His doctors are always thinking ahead to see what they can do to improve his heart. Lord willing, in the near future he can have the Glenn surgery that would give him much more stability than his current anatomy. We have scheduled a pre-Glenn cath procedure to measure his eligibility for the surgery. We are praising God that there may be something we can do for Duncan now that he is growing and stable! At home, we will continue to receive visits by our hospice nurse and private duty nurses. And of course, we will give more than the prescribed amount of snuggles and lovings to Duncan! 

July wrapped up with a visit from my family. It was the first time both my parents and all my sisters visited us at home with Duncan! We got some sweet time together, and even built a deck for our front porch! Duncan loved playing with his aunties and grandparents! 

Thank you for praying for us! Days with Duncan at home are such a blessing, yet they can change in an instant. We've seen this summer just how quickly we can be driving back to the hospital! It could be something as simple as a UTI, but it means we need to be readmitted to the hospital. We are so thankful for all the resources and numbers we have to call if we become concerned about Duncan. The Lord has been so good to us, he sustains us even though we are always on alert. He has given us wisdom, guidance, and skilled nurses who support us at home and from afar. God has made a way for Duncan to be home with us! 

Be on the lookout for a birthday post! We cannot believe we have almost known our Duncan for a whole year! 

Praise

• Duncan is stable at home. He has weathered a few vomiting episodes at home without needing to be readmitted. 

• Duncan has gotten the professional hospital care he needs when his ailments are more concerning, and has been discharged to come home after every admission. 

• We have consistent and kind nurses who come to our home! 

• We are tackling more projects on our house and enjoying the creative freedom to turn our house into the Robertson dream home! 

• Murray has been able to work from home and go to work in person. He can make it in person to be present for important meetings and to be hands on with his projects. He can also stay home and be a support for me and Duncan. 

• We are considering the Glenn and planning for Duncan's first birthday! 

Prayer

• Please pray that Duncan does not get an infection or vomiting spells that cause him to be admitted into the hospital. We are vigilant with keeping him safe from germs, but we also want him to be part of our life in Laurel. We cannot help when he throws up, but we want to avoid dehydration so he doesn't have to be admitted. 

• Pray that Duncan will continue to develop age-appropriate skills. We specifically are working on tummy time and eating by mouth. He can do both, but we want them to be habits so he can grow! 

• Pray for strength, peace, and resilience for us as medical parents. We are always on alert; even at night I check on Duncan to make sure he doesn't pull his feeding tube out while he rolls in the crib. We always wonder about his heart in the back of our minds - lots of normal symptoms could be signs of heart failure. We want to be good stewards of our son and trust God to sustain all three of us! 

• Please pray that Duncan is a Glenn candidate. While sending Duncan back to the operating room would be scary, it would also mean that if successful, the Glenn could add years to his life. Lord if this is your will, let it be done! 

We got to experience the blessing of the multitude of your prayers as we took Duncan into our home! Here are some photos that walk you through our journey home. So many people were helping us and cheering us on!

The morning of our discharge, we gathered together with Frandsen and friends! Madeline and Rachel worked hard to get us to the day of discharge and stayed with us all day until Duncan got in the car! Dr Shores, who monitored us prenatally and helped us make a plan for Duncan's birth, also stopped by. After Duncan was born, she visited him in the mornings, often before I got to the hospital! She was Duncan's primary cardiologist before Dr Frandsen joined UMMC. We're so thankful we got to see all of them the day we left!

One of the saddest goodbyes, leaving the Easley home! It's a “see you later”, of course! They came to send us off when we discharged. What a treat to celebrate with our friends!

Car trouble couldn't stand in our way of getting home, although it tried! Murray’s truck got a flat tire, but the Winters were already there to help us move home. What a sweet blessing to take Duncan home with the friends we made in the hospital!

It took Duncan a few days to adjust. He slept most of the time and was grumpy when he was awake. Duncan must've spent alot of energy getting stimulated by a new place after looking at the same four walls most of his life. Thankfully, we started to see his personality shine through! Now he's excited to come out of the nursery in the morning. He loves to be included at the breakfast table!

We have now assumed the responsibilities that milk lab and pharmacy used to do for us in the hospital. Every day, we draw up Duncan’s medicine and mix up his breastmilk and formula. We get a daily visit from our hospice nurse. We are also meeting nurses for private duty nursing which will be a big help as Murray goes back to work. Before that set-in place, we already got a special visit from Grandmary and Auntie Salem!

One of our responsibilities is doing our best to protect Duncan from catching any infections. If Duncan gets sick, he may need to be hospitalized again since his heart will have to work so hard to fight it off. Murray and I want to jump right back into life in Laurel, and we want to see all our friends again! But we need to have patience as we figure out how to introduce Duncan to our community while protecting him from infection. Being careful on the front end means Duncan can stay home and meet more friends! All of it is worth it when we see how happy he is!

Making it to this day is a miracle. Before Duncan was born, the doctors said he had a 30% chance at life. After his birth, it was clear that he was not as bad off as they had originally thought. Even now, especially after recovering from his life-threatening event in December, it is amazing that he is alive! The last surgery performed on Duncan’s heart was intended to last him until 4-6 months old. Our doctors said that Duncan’s oxygen saturations couldn’t be this stable based on his shunt alone - his body must’ve developed arteries to the lungs alongside the shunt. We are not sure of all the details, but one thing is clear: Duncan’s life is a miracle!

We do not have a surgery plan. We do not expect Duncan’s current heart to last forever, but no one can put a time estimate on how long it will. But one thing we do know, God is more powerful and more in control than we can understand! Every one of Duncan’s days has gone according to God’s plan. God has been faithful and trustworthy during all of the terrors and joys. Not once did things slip out of His control, although they felt like they were out of my control. Duncan’s life is a good reminder that no matter how much faith I have, God is 100% faithful and 100% in control. And it has been for His glory and our good that Duncan has lived this long! We praise Him for each and every day and trust Him with the ones to come.

“For you created my inmost being; you knit me together in my mother’s womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. My frame was not hidden from you when I was made in the secret place. When I was woven together in the depths of the earth, your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be.”

Psalm 139:13-16

On Sunday we watched our church’s service online since we’re not ready to bring Duncan to large gatherings yet. We were reminded of a story in Acts 20, where Paul miraculously resurrects a boy that had died. The miracle was amazing, yet the focus of the story was not the miracle, but the message Paul was preaching. The miracle brought joy and comfort to the people - not because it was their hope, but because it pointed to their hope! We know the same is true for Duncan. The Lord is using the miracle of Duncan’s life to produce hope that will not put us to shame (Rom 5:5).

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Praise

• Duncan is home! We are all together as a family, every moment of every day. And we get to live in the beautiful home God gave us!

• We had so much help getting home and resettling. People helped us get discharged, they helped us physically leave the hospital, they helped us move back into our home and they are feeding us now that we are here. We have felt the love from so many of our family and friends!

• We are getting to reconnect with our Laurel community!

• Duncan has had no concerning events since being home, although he already pulled his feeding tube out and we dropped his IV pump! Both times the problem was quickly remedied, thanks to the local hospital and our hospice nurses!

• Our home hospice nurses have been a blessing. Our nurse visits every day and brings any medical supplies we need.

• We had our first pediatrician appointment and our first cardiac clinic appointment! What a blessing to have kind doctors! What a privilege to visit the hospital - and come home the same day!

Prayer

• We are starting to set up private duty nursing. These nurses will stay in our home for long periods during the day to help out. Please pray that we can find the right balance with each nurse so they can alleviate some of our responsibilities and we can make them feel welcome.

• Hannah’s maternal grandpa was admitted to the hospital last week for concerning kidney and bladder issues. Her parents have gone up to North Carolina to be with him and make decisions for his next steps. Please pray for the issues to be resolved with a good prognosis, and for Papa to be able to return home soon.

• Murray returns to remote work this week. Pray for focus as he dives back in!

Praying the Promises

^“Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God. For just as we share abundantly in the sufferings of Christ, so also our comfort abounds through Christ. If we are distressed, it is for your comfort and salvation; if we are comforted, it is for your comfort, which produces in you patient endurance of the same sufferings we suffer. And our hope for you is firm, because we know that just as you share in our sufferings, so also you share in our comfort.”

2 Corinthians 1:3-7

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We have been checking things off the list so we can be ready to go home! We've made little changes here and there to Duncan's medicines so they are scheduled at reasonable times for administration at home. We moved out of the PICU to the step-down unit, where we got trained how to take care of Duncan on our own. He had his final echocardiogram, his feeding tube was replaced with a brand new one, and his PICC line was sown in for security. He has been one brave boy!

We have been heavily relying on our team to prepare lots of things in the background. Duncan has a new cardiologist, Dr Frandsen. He is a heart transparent and heart failure doctor who has taken over care for Duncan since we've been back from Arkansas. He has been prescribing heart medicine and carefully monitoring Duncan so he sends him home as comfortable as possible. He works with our social worker Rachel and transplant coordinator Madeline, who have been getting insurance approval, lining up hospice and private duty nursing, and making sure we have all the resources we need. We couldn't have made it this far or this fast without our team, fondly called Frandsen and Friends!

This weekend Murray and I spent all day and night with Duncan in the hospital so we could get used to taking full care of him. We gave him his medicine, refilled his milk, and maintained his PICC line in addition to the care we've already been giving. We wanted to make it as much like being at home so we could learn how to care for Duncan in a safe environment. We even used our own equipment that we will take home with us! The biggest change: we turned off the monitor screen. We won't have the hospital monitor at home, and we need to get used to looking at Duncan instead of his heart rate. It's exciting to pretend to be at home!

Since Duncan isn't in the ICU anymore, we can take him out of his room without a nurse! On Saturday we took Duncan for a stroll around the hospital, mostly so we could get out of his room together! It was so freeing to take our baby out without a nurse. It was the first time Murray and I were with Duncan with no supervision. All three of us enjoyed it, and Duncan even got a nap in!

Tomorrow we plan on going home! Please pray that everything runs smoothly! It will be bittersweet leaving the hospital we've spent the past 7 months in (minus the Arkansas stay). We're sad to say goodbye, but so excited to finally go home! Praise God for bringing us to this moment!

April has been a month of holidays! For Easter Sunday, Hannah’s family came to Jackson. The Monday following was Murray’s birthday! And just three days later, Duncan turned seven months old. We are so full of gratitiude for our family, extended and nuclear, and our Lord Jesus who gives us hope in this life and the life to come!

“For what I received I passed on to you as of first importance: that Christ died for our sins according to the Scriptures, that he was buried, that he was raised on the third day according to the Scriptures, and that he appeared to Cephas, and then to the Twelve.

But Christ has indeed been raised from the dead, the firstfruits of those who have fallen asleep. For since death came through a man, the resurrection of the dead comes also through a man. For as in Adam all die, so in Christ all will be made alive.”

1 Corinthians 15:3-5, 20-22

The doctors at UMMC have been looking into other options for Duncan. They explored fixing the fistula, asked other hospitals for their professional opinion, and even reevaluated giving Duncan the Glenn surgery. We applied to transfer to a few other hospitals that do heart transplants. The leading pediatric heart transplant hospital, Texas Children's in Houston, was our best bet. They specialize in single ventricle heart pumping devices (S-VAD). We sent them all of Duncan's info, and waited.

When we came back to Mississippi after Arkansas, I was at peace. I was happy Duncan wouldn't get any more tests or operations. I was looking forward to going home. And while that was the main goal, the doctors here couldn't send Duncan home until they explored all the options first. They wanted to make sure they had checked everything and didn't overlook a solution for Duncan. So they started talking to Texas Children's. I did not want to move to Texas, especially when I had been thinking about going home. But of course we'd be happy to move anywhere to give Duncan a chance!

Unfortunately, Texas Children's had the same opinion as Arkansas. Duncan's heart is too weak to perform the surgeries needed to list him for a heart transplant. His anatomy is so complex and his heart is so delicate that there are really no safe surgery options. Texas Children's did not accept us, and that was more disappointing to me than I thought it would be.

So our path forward is leading us back to Laurel! We are getting hospice set up, making a sustainable schedule for Duncan’s oral meds, and updating his vaccines. At home, Duncan's care will continue to be very involved. He will still need his medicine on time, his milk replenished, his bath, diaper and ostomy changes, and IV maintenance. Murray and I will be trained on most of this, and will have weekly in home visits from a nurse to check up on Duncan and maintain his PICC line. We're still figuring out what it will look like at home, but we're excited to learn how to adapt our life to accommodate our medically complex baby.

“My eyes will watch over them for their good, and I will bring them back to this land. I will build them up and not tear them down; I will plant them and not uproot them. I will give them a heart to know me, that I am the LORD. They will be my people, and I will be their God, for they will return to me with all their heart.” Jeremiah 42:6-7

Duncan may have alot going on on the inside, but on the outside he is actually quite an easy baby! He sleeps well, he enjoys being held and talked to, and he likes to sit up. I'm trying my best to motivate him to roll and crawl, but since he's so content to play on his back this can be challenging! He likes to play games with us; his favorite game is peekaboo where we act very surprised to see him! He will usually only laugh if you're being very dramatic and loud. Many a smiling photo has been taken with Dad making loud noises behind the camera!

Speaking of Dad, Murray’s big project had its reveal! The leaf vaccuum trailer that he has been designing was manufactured in Bay Springs in late March and brought to Biloxi for a dealer show. Vendors and dealers came to see Pac-Mac’s new and improved products, and the shiny new Leaf Vac trailer was sitting at the entrance! It was a fulfilling time for Murray; he enjoyed talking specs with vendors and catching up with his coworkers.

We really are enjoying life right now. We love living with our friends, the Easleys. They have been so hospitable, generous, and casual. They even hosted Murray’s birthday party! Most days Murray works from home and I come up to see Duncan. Our baby is really showing his personality, he's at a fun age! He recently recovered from what I can only assume was a stomach bug. The doctors were constantly testing and monitoring him to make sure he wasn't throwing up because his heart was failing. We're so thankful it was just a tummy upset and nothing more, although its always sad to see your baby throw up! He hasn't thrown up in a couple days now, and he's already back up to full feeds.

The hardest part about planning to go home is the expectation that Duncan's health will decline. He will grow and develop, but since we can't do any surgical intervention right now, he will most likely feel worse as he gets older. This whole time I've been thinking, “just wait until the next surgery, yes it will be hard, but Duncan will have energy!”. Now that's simply not the trajectory. I want to give my baby the best quality of life I can, and I will - knowing that I'll be fighting an uphill battle. This being said, it's so easy to enjoy time with Duncan! We love every moment, all of it due to miracles God has done along the way, big and small. As we return home with Duncan, we are full of gratitude and joy for this season. A time for mourning may come, but now we're rejoicing!

Praise

• Duncan is almost ready to come home! He only has a few medication scheduling changes and he'll be ready.

• Duncan is acting like himself and doesn't feel bad. His body is accustomed to working with less cardiac output and lower oxygen levels, so to him this is normal.

• We found a hospice provider who can also supply the IV meds Duncan is going home on! This will make his care more consistent.

• Murray finished his work in time to see it at the Hol-Mac Dealer Summit!

Prayer

• Please pray that there will be no insurance delay that slows us down from going home.

• Pray for us to be and feel prepared to care for Duncan! We will have medical help available, but we will be Duncan's primary caregivers!

• Pray for Duncan to grow and develop, and that we will have lots of time with him.

• Pray for Hannah while she continues to provide breastmilk. She's not making as much as Duncan eats in a day, so we're planning to supplement with formula. Pray that she can be encouraged and keep going!

I got to ride with Duncan in the helicopter! It was really special being able to arrive with him. We had only been in Little Rock for six weeks, so I didn't notice I was homesick until I was flying over Mississippi!

It felt so sweet coming back to UMMC. Of course, we all have mixed feelings. We're excited to be reunited with the doctors, nurses, and other medical staff at Children's of Mississippi, yet sorrowful for the circumstance. Many nurses expressed the same feeling: happy to see us; sad that Duncan can't get a transplant.

Going forward, our goal is to get Duncan off of specific IV infusions to make it possible to bring him home. Some of the infusions he's getting are sedation, which if removed slowly, he will be fine without. But some of them are heart medications, and we will need to find oral replacements that help his heart in the same way. If Duncan can't get off of the heart IV infusions, he most liekly can't go home.

Duncan turned six months old! He is sitting up mostly unsupported, reaching and grabbing toys, and giggling. He has been having good days. We began giving him a nightly bath ourselves instead of letting the nurses do it! This is not Duncan’s favorite part of the day, but it gives us autonomy with our baby and the chance to snuggle him when he's all clean (and fussy).

The big goals for Duncan have become going home and living comfortably. I can honestly say this is such a relief. It's what I've wanted for him since day one. It is hard that in order to have this, we have to give up the life-extending surgeries. The odds of Duncan surviving a surgery right now are low, especially one that does not benefit his heart. We do not want to send Duncan to the OR unless we can be seriously convinced that there is something we can do for Duncan where the benefits outweigh the risks.

We have learned that things can change in a day, and you don't know what tomorrow holds. That is always true, even when the days seem to repeat themselves. I am wondering what will happen tomorrow, only being able to hold what will happen today. I expect that if things suddenly change, it will be bad. But that's not always true! Suddenly, we are back in Mississippi, in a city where we have spent most of our time and at a hospital that feels like home. And we are praying for positive change - gradual or quick - for Duncan’s heart. The Lord may have a plan we can't see yet, or He may have gently revealed to us that these are Duncan’s last days. Being unable to know the future, we enjoy each day as it comes.

I revisited the Psalm we clung to when we had Duncan’s prenatal diagnosis.The promises in this Psalm are for those who are upright, gracious and compassionate - qualities I want to display but often don't. So how can I claim these promises? Only through Christ, who is perfect in holiness, and trades His perfection for my selfishness. Because Jesus lived a life perfectly pleasing to God, these promises are His. And because He died and rose again to pay for my selfishness, He bestows this righteousness on us. He took my sin, and gives me his righteousness. Because I am in Christ, I claim these promises! Not because I am good enough, but because He is!

Psalms 112:1-10

“Praise the Lord. Blessed are those who fear the Lord, who find great delight in his commands.

Their children will be mighty in the land; the generation of the upright will be blessed.

Wealth and riches are in their houses, and their righteousness endures forever.

Even in darkness light dawns for the upright, for those who are gracious and compassionate and righteous.

Good will come to those who are generous and lend freely, who conduct their affairs with justice.

Surely the righteous will never be shaken; they will be remembered forever.

They will have no fear of bad news; their hearts are steadfast, trusting in the Lord.

Their hearts are secure, they will have no fear; in the end they will look in triumph on their foes.

They have freely scattered their gifts to the poor, their righteousness endures forever; their horn will be lifted high in honor.

The wicked will see and be vexed, they will gnash their teeth and waste away; the longings of the wicked will come to nothing.”

Praise

• All three of us made it safely to Jackson! Our friends in Little Rock organized drivers to bring back Murray’s truck.

• Duncan is handling his wean well. We are challenging him to go without the drug he's habituated to, which is a big step. We're so thankful all we've seen so far is a bit of irratability!

• We are comforted being back in Mississippi, staying with our friends the Easleys, and being at UMMC.

• Murray's family came to see us and encourage us!

Prayer

• Please pray for Duncan to successfully transition off of his IV medications. We will try oral replacements for most of them, pray that these help his heart in the same way.

• Pray for the Lord’s will in Duncan’s life. Maybe that's going home for the rest of his days. Maybe it's transferring to a different hospital that has the facilities to try a new approach. Or maybe it's miraculous healing! We want God’s best for Duncan.

• Pray for Murray, he is working towards an exciting project launch in April.

• Pray for us as Easter approaches. It will be hard to be away from our home church on Easter. We want more than anything to have Duncan with us at Westminster Pres in Laurel for Easter. If this is not possible, pray that we can be encouraged and comforted.

It is bittersweet to be heading back home. We came to Arkansas hoping for a different outcome, and expecting a long stay ahead of us. With almost no heads up and and no time for preparations, we found that the Lord had gone before us. He provided abundantly for our needs through people we'd never met before. So we remember that he is going before us again. Back to Jackson. Back to UMMC. Back home.

Tonight we will be in Jackson with Duncan. In the upcoming days, we will meet with the palliative care team at UMMC to make a plan for Duncan’s care. Every decision is oriented around his health and comfort. We are asking God for as many sweet days with Duncan as He'll give us.

We are so thankful for all the blessings He gave us in Little Rock! The medical team was quick to protect and care for Duncan, the church was unhesitant to welcome us in, and the Lord was kind in providing us with a place to live with sweet friends attached. Praise God for His goodness to us in Arkansas!

Slowly, the Lord has been preparing us for this moment. Duncan’s complications were piling up, and we didn't want to go too far down the surgery road and regret putting Duncan through procedures that didn't work. We want to do surgery for Duncan, not to him. The odds of Duncan surviving the fistula repair surgery would be slim at best. The Lord has been showing us that it is getting to the point where we choose to protect Duncan’s present instead of trying to create the future we want. Of course we want Duncan to live, but we don't want that desire to drive us too close to the edge. Our baby was showing signs that he had had enough, and we would hate to put him through procedures he can't recover from.

The Arkansas team is planning to send us back to UMMC in Jackson where we would be closer to our home and community. There is even a slight possibility we could take Duncan home on medicine, but it will depend on what medicines and what nursing help is available in Mississippi.

It is hard to share this blow with you all. This isn't what we hoped for or what we expected when we transferred to Arkansas. We've only known about the fistula for a few weeks, and now it's the final straw? But we know it's not a surprise to the Lord. Duncan was formed in the womb exactly according to His plan, fistula and all. Part of us as parents feels relief. There are no more procedures in Duncan’s future. No more intubation, no more anesthesia, no more surgery. We get to make Duncan as comfy and happy as we can.

We used to be waiting for the next life saving procedure. Now we are waiting for Duncan's final day, but we are also waiting for the resurrection, when we will be reunited with him. We are trying to focus on the present and enjoy every day with him. Our hope has always been in the resurrection, even more now we look forward to that day.

“I declare to you, brothers and sisters, that flesh and blood cannot inherit the kingdom of God, nor does the perishable inherit the imperishable. Listen, I tell you a mystery: We will not all sleep, but we will all be changed - in a flash, in the twinkling of an eye, at the last trumpet. For the trumpet will sound, the dead will be raised imperishable, and we will be changed. For the perishable must clothe itself with the imperishable, and the mortal with immortality.

When the perishable has been clothed with the imperishable, and the mortal with immortality, then the saying that is written will come true:

“Death has been swallowed up in victory."

"Where, O death, is your victory? Where, death, is your sting?"

The sting of death is sin, and the power of sin is the law. But thanks be to God! He gives us the victory through our Lord Jesus Christ.

Therefore, my dear brothers and sisters, stand firm. Let nothing move you. Always give yourselves fully to the work of the Lord, because you know that your labor in the Lord is not in vain.” 1 Corinthians 15:50-58

Praise

• We are so thankful for the peace the Lord has given us over the past week. We don't know what the Lord has in store for us, but he is giving us strength for each day.

• Insurance has given us approval to transfer back to UMMC.

• Both at UMMC and in Arkansas, Duncan’s team of doctors, cardiologists, nurses, and specialists have cared for him wisely and intentionally. We know that their decision was made with Duncan’s best in mind, and are thankful that they don't make decisions lightly or hastily.

• The Risers (the family who is housing is in Arkansas) gave Hannah a sweet birthday celebration! We have been comforted and encouraged by the church body here.

• Hannah’s family was able to come for a visit last week!

• A year ago we bought our home! We are so thankful for this blessing and celebrate one year of home ownership thanks to God!

Prayer

• Pray that Duncan will know the Lord! We have hope for his eternity. Pray that we can minister to him each day and that the Spirit will give him understanding just as He gave in Acts 2.

• Pray for a miracle! While the doctors have done everything they can for Duncan, only the Lord has the power to heal. It’s a small thing in the hands of the Living God!

• Pray that Murray and I can enjoy each day, taking it one day at a time.

• Pray for Murray as he continues to work remotely. He has been working on a big project, culminating in a product launch in early April. Pray that he can provide good support for his work team as he walks with Hannah through this journey.

• Pray that Duncan can experience no discomfort as he continues learning and growing! Trust me, he has not slowed down!

At this time, we ask that you please refrain from sending mail. We will be moving soon and do not want to worry about updating our mailing address. If you would like to send us a message, please feel free to reply to this email or send a message on Substack. We appreciate your support and are simply asking for it in digital format right now!

He's growing fast! He still loves when people come and talk to him, he smiles at every new face! He watches everyone in the room, and always likes to know where his nurse is. He’s getting smart, he's begun to differentiate the nurses from visitors.

Most of his motor skills have lagged, but he's done great with sitting up and holding his head! He loves to be able to see the room and the people around him. We even got him a little chair so he can sit up by himself!

After running in circles, our insurance finally got sorted out! Praise God! We have begun the transplant evaluation. This is a series of tests and blood work needed to list Duncan for a heart transplant. Most of the tests were already performed on Duncan when he arrived at Arkansas Children’s. Thankfully, we didn't have to repeat any of those!

We’re so thankful insurance approved the testing. Now let's pray for no more insurance roadblocks to getting listed!

We do have a physical roadblock to getting listed, however. Duncan’s heart is not the only oddity in his anatomy. He only has one working kidney and was born with an imperforate anus (no butt hole, his rectum dead-ends inside his body). Having an ostomy is not a issue and can be reversed once his heart problems are solved. However, we may have to address this situation sooner rather than later.

After some tests, we've confirmed that Duncan has a fistula between his urethra and his rectum. In other words, there's a small connection between the end of his intestine and his bladder. This means that poop can go where pee is. The test also revealed that his pee can reflux from his bladder to his kidney. Due to this, bacteria can get into his urinary tract and even his kidney, posing a serious infection risk that threatens his listing for a heart transplant.

This week the surgeons and heart doctors are meeting together to discuss what can be done. They have a meeting on Tuesday at 1pm central time to discuss Duncan. The fistula needs to be addressed before listing Duncan for a heart transplant. Plans are still being made. It's very scary sending Duncan into surgery in his current state of heart failure, especially surgery that won't make any positive impact on his heart. But it's important to address this issue and reduce Duncan’s risk of infection.

Heart Transplant Facts

• Bodies are smart, and will attack foreign objects, even if they are helpful new organs with matching blood types.

• To avoid the body rejecting the heart, people with heart transplants have to be on immuno-suppresants for the rest of their life.

• Right after transplant, immunosupression is at its max, preventing the body from immediate rejection. Over time immunosuppression is reduced to a lower level, allowing the body to fight infections, albeit not as well as a normal person.

• This makes transplanted people at high risk from infections because they have intentionally weakened immune systems. A simple UTI could be life threatening for someone immuno-suppressed.

We’re really hoping this hurdle can be resolved soon, so that Duncan can be listed for a heart. Once he gets listed, we've been told he will have to wait for a long time until a heart becomes available. We're eager to start accruing time on the wait-list.

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The Coming of Zion's King

“Rejoice greatly, Daughter Zion! Shout, Daughter Jerusalem! See, your king comes to you, righteous and victorious, lowly and riding on a donkey, on a colt, the foal of a donkey. I will take away the chariots from Ephraim and the warhorses from Jerusalem, and the battle bow will be broken. He will proclaim peace to the nations. His rule will extend from sea to sea and from the River to the ends of the earth. As for you, because of the blood of my covenant with you, I will free your prisoners from the waterless pit.

Return to your fortress, you prisoners of hope; even now I announce that I will restore twice as much to you.”

Zechariah 9:9-12

I love this passage, written during Israel's exile to Babylon. I feel like a prisoner of hope, I have no other option than to have hope. Hope that Duncan will survive treatment and get a heart. Hope that Duncan isn't too complicated for a good solution. Hope that we can still go home. If I stop hoping, I would get very discouraged. But God has promised to restore double to us! He is over all of this and has a plan for our good.

Praise

• Duncan is relatively stable and doing well as we wait. He doesn't know he’s sick, and we have loved watching him grow and learn.

• While we miss our nurses and doctors at UMMC, the team at Arkansas Childrens has taken great care of Duncan.

• Even though it took a while, we're so thankful for Duncan’s insurance approval, allowing us to move forward with the transplant evaluation.

• We have been staying in a cute guest house provided though church connections, and have been warmly welcomed by the church body in LR.

• Murray has been allowed to continue working remotely. We are so thankful for the support and stability we've had through this season.

Prayer

• Pray that Duncan’s heart will strengthen and remain stable as we wait for a long term solution.

• Pray that the doctors, surgeons, and cardiologists will be given wisdom as they make a plan for Duncan’s care, especially during conference on Tuesday.

• Pray that the fistula can be addressed in the near future, and that Duncan can bounce back quickly so he can be listed soon.

• In order to keep the urinary tract bacteria-free, we've been asked to bag the two stomas of Duncan’s double barrel colostomy seperately. We are back to the drawing board with the ostomy bag now. Please pray that we find/invent an affective solution soon!

• While we've moved many times, it's not easy landing somewhere totally new. Pray that we can plug into local community quickly.

• Pray for us as we wrestle with the big questions. It's hard not knowing why, and even harder not knowing what the outcome will be. Pray that the Lord will surround us with his presence and help us to trust him. Pray that we can have hope and joy in the face of sorrow and uncertainty.

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The days leading up to the procedure were tough. Duncan was irritable (not a normal Duncan trait). It is so important that Duncan doesn't get too worked up, because that puts too much strain on his heart. Because of this, in long times of fusiness we have to give him extra medicine.

The Arkansas doctors needed to do a cath lab and CT scan of Duncan’s heart to better understand his anatomy. The surgeons wanted specific imaging so they could decide if it's possible to do a heart transplant on Duncan. These procedures were diagnostic, and shouldn't have a huge affect on Duncan’s heart.

The day of, many doctors came and spoke with us about what would happen. I got to hold Duncan in my lap for breakfast that morning, it felt like a normal day with my baby! When they took him to the cath lab, Murray and I moved out of the hospital and into a guest house offered by a church memeber here in Little Rock. We're looking forward to getting to know them better and getting plugged into the churches here! The guest house is a sweet relief from the small hospital room.

Duncan’s procedures went really well! His cath numbers looked better than his previous cath in Mississippi, potentially suggesting a Glenn might be possible. The CT scan went well too, and pretty soon we were meeting Duncan back in his room! However, when the doctors talked to us, they were concerned that Duncan’s heart function is still very weak. If his cath numbers look good but his heart function is still poor, we don't know the cause of his poor function or how to fix it.

He was kept intubated an extra day so he could get his PICC line replaced. During the doctors’ rounds on the second morning intubated Duncan showed them he was ready to breathe on his own so they extubated him then and there!

On Thursday afternoons, the surgeons and doctors meet to discuss the plan for each patient. They saw Duncan's new images, and decided a heart transplant is the best course of action. Once Duncan is listed for a heart transplant, we will be waiting until a suitable heart becomes available. We've been told the wait is long, it may even be a year or more. In the waiting period, they will most likely need to do some procedures to give Duncan's heart the help it needs to wait. They're prepared to help sustain Duncan while heading down the transplant road.

My cousin recently shared great news with me - she is expecting triplets!! Because of a few factors, hers is a high risk pregnancy. While we were talking about it, she ministered to me with these words: “It's not up to us to make the decisions. God has determined everything. Our job is to seek Him and His will, and He will make it plain”. (paraphrased) On this journey with Duncan, it feels like we will need to make heavy decisions. In reality, we need only to walk by faith down the path God has cleared for us.

If we had to choose, we would've gone home after Duncan's Norwood surgery. But that was not God's plan, and he kept us in Jackson so Duncan's life could be saved in December. If it was up to us, Duncan would have gotten the Glenn by now and be recovering to come home. But God's plan is greater than that, and He has a transplant planned. When we had to decide where to transfer, we chose Atlanta. But that was not God's plan, and He sent us to Arkansas instead.

We do not always know His plans. Sometimes, by His grace, He shows us His purpose. We know now that it was for good reason Duncan stayed at UMMC as long as he did. If he would have had his near death experience at home, we could not have saved him. But since he was living at the hospital while waiting for his Glenn, he was in exactly the right spot to be saved. Some of the events that have unfolded since then have been confusing. We don't know why we are so far from home. We don't know why we need to be away for so long while waiting on a heart. And God does not have to show us why now. Faith is believing in things you cannot see.

When Duncan was intubated this week, he woke up and got fussy sometimes. Babies don't like breathing tubes down their throats, and usually mamas can't hold them while they have a breathing tube. To keep Duncan calm, I stood out of sight so he wouldn't get mad at me for not picking him up (possibly the hardest thing I've ever done). The whole time I was thinking, “I'm right here, Duncan! I love you, Duncan! I can see you and I have to leave you intubated for your good.” I can imagine God saying the same things to me. “I'm right here, daughter! I see you! And I know you don't like this, but it's for your good.” Tempted as I am to be angry with Him and to doubt His love, I can remember that He knows all things and I do not. This may seem unloving now, but it's only because of His great love for us that He has this planned!

Duncan’s plan for now is to get the neccessary blood work done for his transplant listing. His heart is working too hard while he's awake. We will be waiting to see if he needs intervention or if he can hold out until he gets a new heart. We're looking expectantly to see what God will do next!

Praise

• Praise God for giving us places to live! We were allowed to stay in Duncan’s room for the first week. We're now staying in a sweet guest house close by.

• Once again, Murray is working remote, we are provided for, and Medicaid is reaching out telling us about our many benefits.

• Duncan did not have an immediate dip in heart function after his cath procedure!

• We joined a program here called Beads of Courage. It's a simple way to catalogue all the things Duncan has endured while at the hospital. Each day he gets a bead for blood draws, IV infusions, x-rays, echoes, visits from PT and OT, and more. It's neat to see a representation of the care he is getting and the things he has endured.

Prayer

• Duncan was approved for Mississippi Medicaid to cover his medical expenses. They approved for him to be transferred to Arkansas Childrens, however we are still waiting on their approval to start the transplant evaluation. Please pray he gets Medicaid approval for the transplant evaluation to start very soon.

• Once approved, please pray Duncan will get the evaluation tests done and be placed on the heart transplant list as soon as possible.

• Please pray that we will have a miraculously short time waiting for a heart. It is possible with God; if He is willing He can do it!

• Pray that Duncan does not need severe intervention while he waits for a heart, and that his heart can sustain him while he waits. The doctors can't explain his poor function, and we are praying his little heart can keep going for a bit longer without help.

• We've made some new hospital friends! Rebecca and Daniel have an eight week old son here named Elijah. Elijah is sporting a Norwood heart and has a few post op complications they hope won't stop them from bringing him home in February.

• Pray for us as parents. It's hard giving our baby medicine to calm him down when he's not upset. It's hard knowing his heart function is poor and there's nothing we can do. The unknowns are scary. We want to keep trusting that God’s plan for us is good!

He was flown from Children’s of Mississippi to the airport in Little Rock, Arkansas. From there he rode an ambulance to Arkansas Children’s.

After my parents helped us move out of the Fondren air bnb, Murray and I drove our seperate cars up to Arkansas. We received many calls informing us that Duncan arrived safely and got settled. That night we checked in to the hospital and were reunited with our son!

The doctors and nurses here have been very welcoming. They've been patient with our questions, yet wasted no time getting the information they need from Duncan to make a new plan of care. Duncan had a good first night here. I began to envy him in his nice big crib while I tried getting comfortable on the hospital fold-out bed!

Arkansas is expecting icy, snowy weather this weekend. Murray and I want to stay with Duncan until the ice melts and we feel comfortable driving to and from the hospital. We have been amazed at all the connections people have made for us; two churches here in Little Rock have already reached out, ready to help! We feel so blessed to be provided for in this way. This is one of those times I'm reminded: it's easy to trust God! He has already prepared the way.

Duncan is doing pretty well, but obviously taking a bit of time to get adjusted. He's mostly been sleeping, with a few moments of happy awake time and fussy awake time. The cardiac doctors met today to discuss Duncan’s case, and decided they need more information before they can make a plan. They hope to do a cath procedure and CT scan on the same day sometime next week to get more detailed images. Duncan’s heart anatomy is folded and flipped backwards, making it confusing to understand despite the many images UMMC shared. The Arkansas doctors want to make sure they have all the information they can get.

This weekend we plan on staying the course and staying inside! Next week the ball will start rolling on Duncan’s cath and CT.

Praise

• We all made it safe to Arkansas!

• God has gone before us, already working to provide us options of places to stay.

• Duncan is stable and getting used to his new room.

• Our Fondren Air BNB is all moved out and our house in Laurel is ready for the winter!

Prayer

• Please pray for Duncan's cath lab and CT scan, tentatively scheduled for Tuesday. Pray the doctors and surgeons get all the information they need. Pray that Duncan handles it well even though his heart is not as strong as it used to be.

• Pray for wisdom and clarity for Duncan's medical team. It is not yet clear to the team at Arkansas if Duncan will need a heart transplant, or if he can get the Glenn. They want to keep his original heart if it's strong enough, and if not they want to get him listed for a heart transplant as soon as possible.

• Pray for us as we handle normal baby things like fussiness while we face heavy decisions regarding his future.

• Pray for safety for everyone needing to travel in the ice or snow! The cardiac ICU nurses and doctors still need to come to work even if the roads get icy.

Praying the Promises

“Hear my prayer, LORD; let my cry for help come to you. Do not hide your face from me when I am in distress. Turn your ear to me; when I call, answer me quickly.

But you, LORD, sit enthroned forever; your renown endures through all generations. You will arise and have compassion on Zion, for it is time to show favor to her; the appointed time has come.

He will respond to the prayer of the destitute; he will not despise their plea. Let this be written for a future generation, that a people not yet created may praise the LORD: The LORD looked down from his sanctuary on high, from heaven he viewed the earth, to hear the groans of the prisoners and release those condemned to death.

So the name of the LORD will be declared in Zion and his praise in Jerusalem when the peoples and the kingdoms assemble to worship the LORD.

But you remain the same, and your years will never end. The children of your servants will live in your presence; their descendants will be established before you."

Psalm 101, verses 1-2, 12-13, 17-22, 27-28