A Birthday Unlike Any Other

Adam and I sat in awe yesterday evening, simply floored at the outpouring of love and support for our boys and our family. There aren’t words to adequately express our gratitude. I have been moved to tears throughout last night and all day today. There are times that God watches you, walks with you, and carries you. He has been carrying us through these last few days and He has blessed us with each of you and your prayers to help in doing that. Every single prayer you are praying on our behalf, lifting us up, is something we treasure more than you can imagine. To have friends, family and people we don’t even know take the time to do that, is one of the most humbling experiences there is. So before I update you on the boys today, please accept our most sincere gratitude for the love, support and generosity each of you have graciously given to our little family.

We are technically on the 8th floor of Carolina Medical Center and Levine Children’s Hospital is connected to us. To see the the boys, we have to get daily badges to get into the Children’s Hospital side. It takes a good amount of time to get to the NICU to see Gabriel on the 7th floor of LCH and then to get to the 6th floor to see Caleb in the Cardiac ICU. It’s not easy since they aren’t connected in the way you’d imagine. We went to see Gabriel first. When we got there, he had ripped out his own IV and they were replacing it. It had just been changed and he was getting a diaper change when we got there. He was a bit awake and the nurse asked if we wanted to feed him his first bottle. He did SUCH a great job at taking his first bottle! We are so excited to see his progress and how well he was doing! Adam is the sweetest husband and daddy and asked if it would be ok if the nurses would take up a sign on their beds wishing me happy birthday! The night-shift nurses made signs with footprints and it was JUST what I needed! This sweet boy is definitely helping us emotionally and mentally during the tough moments. Dr. Engstrom was there and walked up to us to chat. I thanked him again for his wonderful visit with us and his prayers. He said, “I never want to leave the Lord out”. He is just the sweetest.

We then went to visit Caleb in the CICU. One thing I know I am going to have to work on and pray about is the PTSD I feel when approaching his room. Our experience the day after birth when checking in on him and hearing Dr. P discuss mortality left me very raw. I have been working to overcome that and remember that God is in control of the plan for that sweet baby. We walked in and saw that Caleb has a new light to help with jaundice and his bilirubin levels. His blood-gas levels are improved (they monitor this for oxygen and carbon dioxide in the blood). They gave him lasix to help him pee more and get rid of the extra fluid in his body from surgery and recovery. This made his blood pressure drop a bit last night so they gave him a little epinephrine to help support his blood pressure. This helped his body process the lasix much better today! They noticed some bruising in his belly and wanted to get an x-ray to make sure there wasn’t an issue with the intestines, infection, etc. and they actually got to look at it when we were there and saw that it was normal. This could just be from the blood thinners he is on, etc. We are thankful it didn’t show something alarming. Today he gets the pericardial drain out! This was the drain that was used to remove pooling blood around his heart when it was knicked somehow during the initial surgery. There has not been any more blood to collect around the heart so they get to remove that. He also gets to be taken off of antibiotics today. Tomorrow, they are going to lessen his sedation to see how he does and to see if his stable vitals continue to remain stable (even though it is with a lot of support). They want to go at his pace and they want to make sure that his body’s only responsibility right now is to grow, to relax and recover.

We got to meet some more nurses and doctors today- Sharron and Dr. Jennifer Bailey. She was so great to give us a detailed report and encouraging news today. I brace myself- I think it’s human nature. Even with a strong faith and belief in God’s promises, it doesn’t mean that we won’t have fear or anxiety. What is important is Who you run to or What you run to in the midst of those emotions. I sat and prayed for that sweet baby and spoke out loud about God’s blessings and His provision for Caleb. Proclaiming these things as that fear creeps up has helped me replace those emotions with encouragement.

Many of you have asked for things that we can share for specific prayers. I know God loves when we call upon Him for specific requests, trusting that He can provide what we deem is impossible for us to handle. Giving these things to him, we are asking for prayer for…

-Caleb’s body to grow stronger each day to be able to handle each day.

-For his reports to show progress in the right direction.

-For Gabriel to continue to do so well and to continue to lift our spirits.

-For me to overcome the PTSD that comes with walking into Caleb’s room.

-For our hearts, as parents- seeing a preemie ICU bed with many tubes, lights and machines. Seeing Aaron on Facetime only right now and missing him so much.

Thank you guys for being our village. We are trying to comment and respond to as many messages as possible and just love receiving these bits of encouragement throughout each day! Thank you isn’t enough- you all mean so much to us!!


This Side of the Coin

Today Adam and I got to spend more time with our sweet boys. Gabriel is doing so well and is eating more and more through his small feeding tube that will be moved to his nose soon. Caleb was stable throughout the night and the tests and ultrasounds they ran went well. He is under lights for some jaundice, his head ultrasound came back stable with no more bleeding on the brain. This was very minimal yesterday anyhow and is very common in preemies/neonates. His fetal echo today showed the stent is doing its job. They have been able to reduce some of the heart meds and he is maintaining good blood pressure. His other surgeries for his aortic stenosis and left ventricle will need to take place later when he has grown closer to full term and has recovered from this difficult procedure. I can’t explain the feeling of walking into one room to hold one healthy baby and walking into another room to see your other child, who is sick, fighting after a life-threatening procedure.

I have to share an experience this afternoon that rocked Adam and I to the core. I cannot express adequately enough to each person reading this what faith can do. What God can do in your life. Adam and I got to the Cardiac Intensive Care Unit and he wheeled me into the large room for this tiny baby fighter of ours. Nurses all around, so dedicated to their job, giving us the positive reports I shared above. We walk over to this precious little boy, who was just inside my womb, so protected and active. We stood watching him with the knowledge of what came together so amazingly to help him just the day before. We asked how the fetal echo went and one of the managing nurses said she would page the on-call cardiologists that could tell us how it went, knowing we are interested in exploring all options for Caleb when those times come and he is ready.

An on-call Cardiologist (Dr. P) came in, who we haven’t met with or spoken to before. He shared the report. He also explained his connection to the Cardiac team in Boston and knowing our interest in an eventual Bivent repair, said that he would contact them with the latest images since we haven’t heard from them yet. He then said he didn’t think the team would agree that Caleb is a good candidate for the Bivent. Partially because of this recent restrictive atrial septum repair he had to have yesterday. I explained that it only showed up in the past few weeks, and that Dr. Walsh (cardio at Baptist) agreed that because it showed up only recently, the damage to the lungs that this can create could be a lot less than babies that have this diagnosis a lot earlier in utero. He said that the restrictive or intact atrial septum can come on suddenly and do a lot of damage. I then said I thought it was a positive that Caleb’s lung x-ray surprised everyone with how good it looked yesterday. Well, he interjected that this doesn’t mean there isn’t damage we can’t see. He then shared that surgeries that come with the 3 stage repair for HLHS might not be effective if the pulmonary veins and lungs are damaged and not functioning properly. Therefore, babies in those situations are only left with initial repairs and are given comfort care and palliative care. They go home with their families to live however long their bodies hang on. He then went into mortality rates for heart babies. (Forgive me, these numbers may be off because this part was a blur) He discussed the survival rate of babies with HLHS surgeries and mentioned a figure of 60%, add onto that prematurity, it goes down to 40%, then add in the restrictive atrial septum and it goes down from there. And that all in all there’s a 50/50 chance of survival this first year of life.

I sat in utter shock, anger and disgust. I said well where is the positive? What hope is there then? He said, well there are a percentage that go on to live fairly normal lives. This is just a very serious and delicate situation and this is a serious diagnosis. Tears began to flow from our eyes. I decided not to say another word and wished to God he would walk away and leave us alone. I sat thinking, “Why are you even here!?”, “We didn’t ask you to walk in here while we were checking on our son!”.

If you have been following this blog and our story, we have made it no secret that we know the scary side of congenital heart defects. I have done quite a bit of research about Caleb’s heart issues. We are not ignorant and simply think this is an easy fix and everything will just be perfectly fine. I’ve seen the numbers, I know the stories of the families who have lost their babies or children to various diagnoses in the groups I have joined online. I wanted to scream “How dare you sit here and dwell on these numbers while we are sitting right here next to our tiny baby who was JUST BORN yesterday, who overcame a life-threatening procedure, who GOD Himself brought through this to be here with us!!!” I’m not saying that giving a dose of reality to parents isn’t something that needs to be done or that the information isn’t true. I know that those numbers exist, but in this moment we NEED to focus on the positive reports, the excitement on a nurses’ face when sharing a lung x-ray, and the numbers that show he made it and is doing well right now.

That doctor walked out after I stopped responding. I stood up and went straight to that baby and laid my hands on him and started praying. I held his hand and I told him that WE are not listening to that today. NOT TODAY! This is not our God’s plan for you, NOT TODAY! God did not orchestrate such amazing events to come together for us to focus on mortality rates. You my son, are a testament to His love and His purpose and we are going to praise Him in the storm. You are not alone. Look at all of these amazing angels God sent to help mommy and daddy help you get better! You are a fighter and we will fight for you.

I got into the wheelchair and Adam and I shed tears all the way back to our room. The next thing that happened literally brought our souls to our knees. A neonatal doctor working in the NICU with Gabriel knocked on our door and walked into our hospital room while we sat crying from this incredibly emotional experience. He introduced himself as Dr.Paul C. Engstrom. He shared the very positive information about Gabriel and admitted that we probably know more about Caleb’s reports than he does since he is in the NICU, not the CICU, however he has gone and offered any help he could provide and has been checking on Caleb. Probably seeing our heartbroken state, he then said, “I’m a Christian. Can I pray with you?”. I immediately burst into tears- something so desperately needed in such an unexpected way. He spoke such a beautiful prayer over us as a family, over Gabriel and over Caleb. He spoke of God’s purpose, God’s power and plan that cannot be thwarted. After he prayed, he shared that there have been so many babies over his 32 years of practice that have overcome the odds and thrived in life. He shared the story of a girl, at 23 years old, who reached out to him recently who he treated in the 90’s. They didn’t think she’d make it. When she survived, they didn’t think she’d live to her first year, that she’d have brain damage, and other crippling issues. She shared with him that she graduated from college, and has gone on to be a doctor of physical therapy in Norfolk, VA. He said, when you are gripped by fear and think that the worst of the worst is happening, think about what we see as the worst truly means. What is the worst that could happen? If we were to lose him, that means he gets to meet the face of Jesus. He shared that there is a plan for Caleb and only God knows that and no one can get in the way of that plan.

After he left, I looked over at Adam, in shock of what we had just experienced. We went from hearing the most defeating information, to the most encouraging information in the span of an hour, from two doctors. We were floored and immediately reminded of what I like to refer to as the coin flip. Which side are you choosing to focus on? If both sides exist, which side are you choosing to stick to? We are choosing the side of faith. It’s as simple as that. It doesn’t mean we are ignoring reality, or that that side doesn’t apply to us or Caleb. We are choosing faith because the odds or numbers don’t go away regardless, but we are not dwelling in that space. We are not wallowing in the fear of the unknown. How dare we let this little baby lay there and fight and meanwhile let our minds and hearts be consumed with depressed thoughts and sadness! That is not why God chose us to be Caleb’s parents. That is not why God has filled our hearts with peace and strength that goes beyond all understanding. We choose to stand by him and fight. We choose this side of the coin. Our children belong to God. We are here to guide them through this life, but they were and always will be His.

If you remember an earlier post about the meanings of the names we chose for these boys, you’ll recall that Gabriel was a messenger of God. When that doctor walked into our room today, saying he was the doctor working with Gabriel, I couldn’t help but think that sweet Gabriel sent this message from God, at just the exact time we needed it.

Tonight and in the coming days, weeks, and months that you pray with us, we ask you to join us on this side of the coin. It will carry you through the most unimaginable moments, bring you to your knees, and change every way you view this life we are blessed with.

His Timing, His Plan

We got to meet our sweet twin boys today! Caleb was born at 8:19 am and Gabriel was born at 8:20 am. Both around 4-4.5 lbs.

Well, not a couple of hours after I posted the last blog post yesterday, my water broke at home around 7pm. In a race to pack, we threw things in a bag, Anne picked up Aaron, and we took off down the road to Levine Children’s Hospital in Charlotte, where we had just been to meet all of the teams that would be involved in our care just the day before.

After getting up to the OB triage room, I was examined (maaaaybe 1 cm dilated and very mild contractions.) The goal was to get an IV going for antibiotics, steroid shots for the boy’s lung maturity, and medication to help with slowing down the contractions to allow for me to stay pregnant for another week to 3 or so weeks. Caleb’s heart rate dropped dramatically and all of the sudden we were surrounded by 6+ nurses and doctors. It went back up once on my side but of course the theme of the night was hunting for the babies so they could both stay on monitors. I was then transferred to a room for observation and given the meds to slow and stop contractions. This was not working and my body was determined to dilate from 1 cm to 5 cm by this morning (Thursday January 28th).

Throughout the night, nurses worked tirelessly to readjust monitors, use ultrasound to locate sneaky heartbeats, and give me some relief from the intensity of the pain. By morning, the doctor said we have done what we can, it’s time to deliver and prepare for c-section. The tears started flowing, and reality was setting in that I would not be able to keep these babies in for the goal of 35+ weeks. In that moment, I just said, “You are in control, God”.

When we got to the very large room for the c-section, it was unbelievable how many people were in the room with us. There were 20+ people and multiple teams, from the two teams from the Nicu, the Cardiac team, the anesthesiology team, the nurses and doctors orchestrating the actual c-section, and many more we don’t even know. Hormone changes and sheer adrenaline made my body shake uncontrollably. The nurses helping guide me through this were the sweetest, most tender coaches I’ve ever met. The spinal was not bad at all, I was told everything every step of the way, and felt no pain or nausea. When Adam was brought in to sit next to me, my heart melted to see his tears flowing. I turned my head to look at him and say, “Adam, look at all of these amazing angels God sent to be with us in this moment. To take care of us and our babies. To use their God-given talent to help us”. This was one of the most overwhelming yet humbling feelings I have ever felt.

First came Caleb at 8:19 am and then Gabriel at 8:20 am. I could only see them from a distance and rely on Adam’s view to get a closer description. After placing breathing tubes in both boys, Caleb was quickly taken with his team to the cath lab to receive the catheter to open up his restrictive atrial septum. Because of Gabriel’s more stable state, Adam was able to cut his umbilical cord and take more pictures of him.

After being transferred to my room for recovery, getting lunch, and Adam visiting Gabriel, we were receiving updates every hour from one of the nurses about the surgery with Caleb. Unfortunately, we would only get to hear, “He is stable, they are still working on him”. This was the update for pretty much every single call for what was supposed to be a 2 hour procedure. It was now nearing 6 hours and we were feeling desperate to know more. We then received a call that Caleb was stable, and the doctor would be coming to talk to us. Immediate worry filled our hearts.

What we didn’t know was happening during this time, was that this doctor, Dr. Paolillo, and the packed room of other medical professionals were saving Caleb’s life. He told us outright, this was the most difficult surgery he has ever performed in the 20 years he has been practicing. Our hearts dropped. He went on to say that because of the smaller size due to him being premature at 33 weeks, it was very difficult on his body to go through this trama. However, he said had we not delivered now and waited weeks, it would have likely had very damaging and devastating effects for Caleb. He then explained what happened in the Cardiac OR. When they went in through the thigh to insert the catheter and go up to the heart, the goal was to place this balloon into the atrial septum and widen it. They didn’t know it would have more a tube shape. It was squirting high-pressure blood into the right atrium, making it impossible to get through after attempting to for 4 hours. He finally decided to burn a new hole near the atrial septum in order to place the stent, relieving the pressure of this blood flow. These materials needed to be fabricated or repurposed since they don’t use these things on babies this small. While doing this though, somehow the lining heart wall was punctured by one of the anchoring wires, however, this was undetectable are using contrast, etc. to find it. Blood collected around the heart. They went through the chest to collect this blood and but it back into the body. It didn’t take long for this blood to stop collecting though which was good. Blood was also filling in the lungs. Lungs are like sponges and absorb this blood, causing them to not work well and not release oxygen into major parts of the body. Caleb’s oxygen levels were in the 30’s and 40’s for a long while and this can be damaging to the heart, lungs, liver, kidneys and brain. We were so scared to heat this. We’ve since heard that other children go much longer with those levels and have been ok. We are hoping that he is able to rebound well after this time of low oxygen levels. Once the stent was placed however, oxygen levels went from the 30’s to the 80’s almost immediately. An updated xray around 3pm showed, largely to their surprise, that the lungs have improved a lot! His blood pressure is looking good, and even though he is on a ventilator, he doesn’t need a ton of extra oxygen. They also said he isn’t having to be on a ton of heart meds either. These updates were from Dr. Matthew C. Schwartz, a partner with Mr. Paolillo. When we went to visit Caleb, Dr. Schwartz was hold compression on the spot on Caleb’s leg that was used to insert the catheter. Because his blood is pretty thin right now, he doesn’t clot well and they don’t do stitches on a tiny baby. This man stood for 6 hours helping to work on Caleb, and hours later, was still holding the gauze on and staying right there in the ICU room. I am so so touched.

Dr. Paolillo candidly shared that first, it was so lucky that we delivered now, even though the prematurity adds difficulties. He shared though that this was it for Caleb, he had no choice but for this to work or he wouldn’t have survived. He said that “I’m a stubborn Italian and was determined to give your son a chance.” He said that it was so fortunate that we were able to get here and do this surgery here, since a good portion of surrounding facilities would likely not have taken this on. He, along with his colleagues, wanted to do this and were determined to see it through. He mentioned that the fact that we delivered this morning was especially crucial. Had we delivered in the middle of the night last night, all of the coordination and collaboration of the teams would not have worked out like it did today. See, he and his partner as well as many of the other medical professionals in the room canceled procedures and their schedules to make this happen. They conferenced with each other last night to be prepared for today. He said, we are so lucky that we went to those appointments on Tuesday. We were able to find the restrictive atrial septum and teams were able to discuss this and discuss a plan to intervene immediately after birth.

Today, Adam and I got to bear witness to some of the highest of highs and lowest of lows. We finally got to meet our twin sons and look at their little bodies, standing in awe of God’s goodness. We were in the middle of a tornado and survived today. We almost lost Caleb today. BUT GOD! God had a plan and His timing is exactly what this baby needed, though we couldn’t see it. The amount of things that needed to fall into place in order to save Caleb’s life were exactly what we needed to acknowledge and have acknowledged for us to get through this. What an INCREDIBLE God we serve!!!

We are asking for very specific prayers right now. Please pray for amazing growth and development for our boys in the weeks and months to come. Pray that Caleb is able to rebound quickly after this unexpected bump in the road. Pray that the low oxygen doesn’t have long lasting effects. Pray for Adam and I to have strength and peace beyond all understanding. Pray that Gabriel continues to do well in the NICU and doesn’t have any complications. We need our village more than ever right now.

Our Visit to Levine Children’s Hospital

Yesterday’s visit to Charlotte was a whirlwind. I started out with the Maternal Fetal Medicine team to have my ultrasound. Both boys are transverse and are making me extremely uncomfortable but they also have a lot of extra fluid around them in utero. Initially, because of this, they wanted to admit me to the hospital for 48 hours because of the excess fluid. It can bring on preterm labor so they wanted to give me steroid shots for the boy’s lungs and then do an amnio reduction, which takes off excess fluid using a needle. The tons of fluids I got last week in the hospital could have contributed to this.

I got to triage, into a gown, babies on the monitor, and then all the sudden another MFM doctor comes in and pretty much says you don’t really need to do this. Honestly, the fluid will likely just come right back. So it’s up to you but we don’t think it’s necessary. It was a complete 180. We were shocked and they said we could be released from triage and be free to go to our other appointments. Needless to say, that was a roller coaster in itself. Tiffany Camp (our Nurse Navigator for Fetal Cardiology) was so kind and helpful and thank goodness we had her helping us through all this!

We then headed to our fetal echocardiogram. Caleb’s heart is evolving and showing kind of what we expected. The left ventricle is smaller than the right but is still a decent size though it isn’t pumping due to the pressure. This pressure is causing the left upper chamber to enlarge and blood flow to regurgitate up through the mitral valve. Because of this, instead of blood flowing from the right chamber, through the atrial septum, to the left side, it is flowing the opposite way and now it looks as though the atrial septum is restrictive. This is something we have to take very seriously and watch because a restrictive atrial septum can place a lot of pressure on the pulmonary veins and cause issues with the lungs. If the hole for the atrial septum becomes more restricted or closes completely, they have to immediately take him to the cath lab and use a catheter with a balloon to open up that atrial septum more and relieve the pressure. This ensures that blood flow balances and doesn’t affect breathing. If this had shown up much earlier in pregnancy, there would be more complications. We’re praying it stays open and doesn’t get any smaller.

Doctor Walsh (our Pediatric Cardiologist at Baptist), Doctor Cook (Levine Pediatric Cardiologist) and one of the interventionists spoke after we left and agreed that because it’s likely he will need a cath right after birth to open up this atrial septum more, they want us to relocate to Charlotte by 35 weeks gestation. I’m currently at 33 weeks. They need us to be able to deliver right away should I go into labor before 38 weeks. They feel as though a c-section would be best because of this most recent finding and are going to discuss the best date for this to take place. Heart Doctors from all around have patient management conferences to discuss in-depth patient cases. Our case is being brought up this Tuesday and we will hear more about this then. They are establishing a plan with the Ronald McDonald House and the Hospitality House to get us housing during this time. We have not heard from our ped. cardiologist about Boston. We knew they would likely need fetal echocardiograms further along, which would include yesterday’s and one we will do again on February 10th at Levine. It is looking like the initial procedure will be done in Charlotte, and if he qualifies for a bivent repair later after birth and we all feel that it’s a good option, then we will cross that bridge at that time.

We are still trying to digest things bc I know another issue like a restrictive atrial septum adds more risk. I’m glad there is some semblance of a plan though bc there really wasn’t one even when we left after our appointments. It’s scary. We feel all of the sudden thrown into warp speed and dizzy from trying to wrap our minds around things. We will need to determine how relocation will go. Doctors want to be precautious, and want me to be very close by. This means I could be there for 2-3 weeks before actually delivering though. We are very fortunate to have family and friends to help with Aaron, though the idea of being away from him and not knowing the time frame of that is absolutely heartbreaking. Thank goodness Levine is only about an hour and a half away. We have no idea what things will look like with Gabriel once they are born. Depending on their size, breathing, eating etc. he may not need NICU time. This means that once we are discharged, he obviously goes with us wherever we are staying. Where we stay may change depending on our needs, etc. He can’t go back into the hospital with us to visit Caleb though so that will be another balancing act.

Some of these things we don’t have answers to. We might not have answers until the week of, or even the day of. It’s quite overwhelming but I’m forcing myself to think of the other side of the coin in all of this. We are blessed to be in a place, with extremely talented doctors, that keep us informed and prepared for the exact care that Caleb needs. We are getting a chance to be prepared, whereas many families in this situation are not. We have teams looking after us, communicating from hospital to hospital, and making decisions for our sweet babies. God has orchestrated a plan for us. I will be very close by in case I go into labor. If I wasn’t, and didn’t have time to get to Levine, then that could be very bad for Caleb. Immediate response might be needed for a catheter and you need to be in a place equipped to do that. Instead of this being a terrifying thing to prepare for, we need to see this as God’s step in getting us to be in the right place at the right time. What we don’t understand can certainly be God working on our behalf, for our good.

As things seem to go quicker, to spin around us, as information comes at us overwhelmingly, it can feel very easy to feel quite small. I found myself feeling like such a small person yesterday in a large world I’m so unfamiliar with. Adam and I have met with so many doctors, been in so many ultrasound rooms, and seen so many buildings. The truth is God held our hand when walking through each door. He sat beside us in each meeting, in each consultation. He wiped each tear that was shed. He continues to do so every day.

Prayer Requests

  • For fluid levels to go down and preterm labor risks to decrease.
  • For Caleb’s restrictive atrial septum to not get any smaller and to even open back up more.
  • For damage to Caleb’s heart to slow down and the pressure be relieved.
  • For God to help us make the best decisions for our family about how to navigate relocating and how balance the days and weeks to come.
  • For all the doctors and nurses that God has put in our path helping each other and helping us to receive the best care possible.

And I prayed and prayer that has been repeated hundreds of times since then. In fact, it has become a prayer mantra: Lord, surprise us… In His omniscience and omnipotence, God has determined there are some things He will only do in response to prayer. The Bible puts it bluntly: “You do not have because you do not ask God.” If we don’t ask, God can’t answer. It’s as simple as that. The greatest tragedy in life is the prayers that go unanswered because they go unasked. I don’t pretend to understand where the sovereignty of God and free will of humans meet, but it motivates me to work like it depends on me and pray like it depends on God. And if we do these two things, God will keep surprising us.

“Draw the Circle” by Mark Batterson

Curveball…or Stone

Life is full of curveballs, and in this case, more like stones!

I started having bad right kidney pain Monday afternoon and by Tuesday morning it still was lingering. Not wanting to take chances with a possible infection, I called the Maternal Fetal Medicine. They told me to go to the hospital at Baptist to get checked out. After urine tests they saw no infection (Thank goodness!) and they felt it was Hydronephrosis and I was told to take Tylenol. Hydronephrosis occurs when the ureters are being blocked or pressed against and urine backs up into the kidneys, causing swelling and a lot of pain.

That night and all day Wednesday my pain level was still pretty bad. I was trying to make it to Thursday afternoon when I had my MFM ultrasound scheduled to see if they’d look at my kidney too. Thursday morning though, I was in agony. MFM advised I go back to the hospital.

This pain was on par with that of labor pains and contractions. Not being able to sit still or breathe from the pain, Adam took me in Thursday morning to Baptist. Still not showing any infection, they wanted to do an ultrasound and see if this was and is a kidney stone. An ultrasound showed inflammation in the kidney and hydronephrosis but they couldn’t get a definitive view of the ureters bc the babies block that view. They did see an 8mm stone in the left kidney that hasn’t moved yet. I’m praying it won’t any time soon! They didn’t want to do a CT scan because of the radiation exposure to me and the babies. Instead, the doctors wanted me to stay overnight to manage my pain and to strain my urine and try to get this possible kidney stone to pass.

I ended up staying two nights with multiple severe pain episodes needing either Fentanyl, Oxycodone, and/or Tylenol.  I was given Flomax each day to help relax the kidneys and ureters and help whatever stones were there to pass. Twice a day babies were on the monitor and looked really good. They’re super active and it took some work to get them to stay on for a consecutive 20 minutes. Haha! They checked and I’m not dilating yet thank goodness. The pain of this kidney issue, coupled with the pains that come with being 32 weeks pregnant with twins brought my body to exhaustion and tears. A lot of prayers were said and God sent some precious nurses to help along the way.

The doctors sent me home today (Saturday) with 5 days of Flomax and Oxycodone for pain. I’m not pain free, but I’m hoping the more Flomax flushes out, the better things will get.

What a whirlwind I swear! I can’t say enough about the support system that surrounds us. I don’t post much on Facebook because it can be a place that isn’t always the most positive but we are an open book and value the love and support of our family and friends so very much. Adam drove back and forth to get what I needed, packed bags for Aaron and just was and is an amazing support through the pain. He’s my rock and is my calm during the storm. Family members watched our sweet boy, sent flowers and Facetimed. Close friends, who happen to be co-workers, helped create my remote learning page for next week and assignments for my students as well as arrange for meal drop-offs. Texts and calls of care and support from friends surrounded us with love and continue to do so. We also got the sweetest package from the Ronald McDonald house to stay busy during the hours at the hospital.

Times like this remind me of the lyrics of one of my current favorite songs- Evidence by Josh Baldwin.

I see the evidence of Your goodness

All over my life, all over my life

I see Your promises in fulfillment

All over my life, all over my life

Help me remember when I’m weak

Fear may come but fear will leave

You lead my heart to victory

You are my strength and You always will be

We are continually humbled and just floored by the wonderful friends and family we have that step in during times of need. Thank you for being our village. We love and care for you so much ❤️

*I will update everyone Tuesday evening after our day in Charlotte meeting with the teams at Levine Children’s Hospital!

A Big Boy Bed and Twin Nursery

We’ve been working hard to get things ready for our boys to arrive! First, we wanted to get Aaron into a “Big Boy Bed” before they arrive. Too many transitions at once just aren’t a good idea. It turned out great and was our first big project.

Between this room transformation and finishing the nursery, we’ve had another ultrasound and have established our appointments to meet the team in Charlotte at Levine Children’s Hospital for January 26th. Our last fetal echocardiogram was also sent to Boston for review and we are waiting to hear their opinions on Caleb’s heart. On the 26th we will be in Charlotte from 9am to sometime around 3-4pm. We will meet with their Maternal Fetal Medicine Team and have an ultrasound, the single ventricle cline/neurodevelopmental program, the Cardiovascular Surgeon, the pediatric cardiologist for another fetal echocardiogram, the social worker, and the fetal cardiac navigator to discuss what to expect during hospitalization. We will have a phone consult on 2/3 with the neonatology team as well. This is an overwhelming and intimidating day just reading the itinerary and schedule. I choose to think of these meetings as gifts from God. There are so many that don’t know of their child’s CHD ahead of time and never get the chance to meet these amazing medical angels before welcoming their sweet baby. Though there is anxiety and uncertainty, God gives us the Grace to navigate the day at hand. So we ask for prayers as this important day approaches. Prayers for strength, calm nerves, and for the medical staff that we meet. They know we are seeking out Bivent Repair advice from Boston and want the best route possible for Caleb and these boys.

(We can’t get a great 3D of them in the same appointment so here’s the closest one so far)

At Wednesday’s ultrasound Caleb weighed in at 3.2 lb. and Gabriel at 3.12 lb. They are growing and passed all the markers for the weekly test they give. Gabriel has a little more fluid around him so they are just keeping an eye on this. We pray it resolves itself and goes back down. The MFM doctor called them “bigger twins”, which was so awesome to hear! They aren’t really big, just a really good size for 31 weeks and this helps Caleb so much. I am not dilated yet, praise God! We need these babies to keep growing!

We are almost done with the nursery! We still need to put up curtains, the mobiles, monitors and finish the closet. Adam has done ALL of the manual labor and has created such a great room for his boys 💙 I’ve been hunting around for things that create a light, airy, and peaceful space. I want this nursery to be a serene place to spend time snuggling these boys. I know they won’t be in here right away, however it will become a great space for them eventually. I chose to have a daybed in this room not only for us to use as needed, but for anyone who might come to help with the boys and Caleb. We can’t wait to rock, read, pray and love on these sweet boys in here!

A Light Unto My Path

Today Adam and I went to our fetal echocardiogram at Wake Forrest Brenner Children’s hospital in Winston Salem. This is our third fetal echocardiogram and the third location we have been to. Many of these specialists and sonographers rotate to several locations, including our pediatric cardiologist.

As expected, the pressure build up has caused Caleb’s left ventricle to not grow as well and it is now becoming smaller than the right ventricle. It is still growing, just not at the rate as the right side. Though disappointing, this isn’t surprising and was honestly expected at our last echo 5 weeks ago. A positive is that there doesn’t appear to be more scarring. This is encouraging because scarring affects the ability for that ventricle to pump and grow healthy muscle. We are currently still in the stage of critical aortic stenosis but this is also in conjunction with what is called “Evolving Hypoplastic Left Heart Syndrome” (HLHS). How, when, and if it evolves is yet to be determined.

Our cardiologist is starting the process of scheduling our full day visit to Levine Children’s Hospital in Charlotte to meet the surgeon, cardiologist, and Maternal Fetal Medicine team. We’ll also have an echocardiogram with them. We’ll have a conversation with them about their thoughts on what to do. This will take place hopefully in the next couple of weeks. Through further research and based on what our cardiologist has mentioned, Levine’s team doesn’t do the complex biventricular repairs. He has a lot of faith in the capability of the surgeon to do an outstanding job with other pediatric heart surgeries though. This team would be doing the 3-part HLHS surgery (Norwood, Glenn and Fontan). IF this is the BEST option for Caleb and all parties agree that this is what is right for him, this is the direction we will go.

Dr. Walsh is also sending today’s echocardiogram to Boston Children’s Hospital, to be reviewed by Dr. Tworetzky. This would be where we go IF Caleb’s heart qualifies for the Biventricular Repair (2 ventricles) and if all parties agree that this is a great option for him and will result in a successful outcome, especially with the better benefits long-term. We will wait to hear what they say about the potential for this bivent repair. They may say they want to wait to review an echocardiogram once we are further along. Not knowing how much time we actually have before delivery, we wanted to get that ball rolling.

I wanted to share the difficulty in being at this place in our journey and to ask for specific prayers. We are in a stage of waiting and are not able to lock in specific plans, knowing that decisions for which way to go and where to go might be somewhat left up to us. Here are the tough issues we are dealing with at this moment….

  1. We don’t know to what degree Caleb’s left ventricle’s growth will be restricted and what its’ pumping ability will be at birth. Once pressure from the restricted aorta is relieved, it could pump well but we’re not sure. Scarring affects this as well. This affects whether or not he would be a good candidate for the biventricular repair.
  2. We could possibly deliver early unexpectedly at Brenner’s in Winston, and Caleb would then be transferred to Charlotte.
  3. We could deliver in Charlotte, and after birth, they determine he needs repair in Boston. This would be expensive, I would be in recovery with Gabriel and we would need to travel to Boston. Not ideal.
  4. Boston could want to wait until Caleb is born to better assess his heart and make a decision. Like the above possibility, this is not ideal.
  5. If Boston is an option, from the stories I have read, they would need to make the case with insurance that having surgery there is absolutely necessary and they are the only ones qualified to do this in order for it to be considered “in-network”. Hence, why it is important to get this figured out ahead of time.
  6. The costs associated with traveling to Boston, staying there for an undetermined amount of time, being away from Aaron, etc. Though it’s worth it if the bivent gives him a better quality of life long-term, this is something we will need to tackle.
  7. Some babies do part of the 3-part surgeries (Norwood, and/or Glenn) and get a bivent repair later on. No case is exactly alike, therefore hard to plan for ahead of time.

I’m currently 30 weeks pregnant and have another Maternal Fetal Medicine ultrasound and prenatal appointment next week. I’m praying these babies stay in as long as possible. Things are getting pretty uncomfortable, including sleep. Space is limited and these boys are very active, lol! I’m short-of-breath and tire easily, but so blessed to have an otherwise healthy pregnancy.

We would like specific prayers for clarity. We know that whatever direction things end up going in, God has this planned out already and knows exactly what we need and what Caleb needs. We need prayers that I continue to carry these babies as long as possible. Also, that our communication with Charlotte and Boston goes well, that they get back to us quickly and give us opinions that are clear and detailed. We want to feel confident in the decisions we make going forward and we would regret not exploring all the options for this sweet baby. I’m sure the surgeon in Charlotte is confident in his abilities in the surgeries he does well, however, we want him to be honest if the bivent in Boston is a good option and could give Caleb better health down the road.

In the book, “Draw the Circle”, there is a part that stuck out to be in my nightly reading. It says,

“There comes a moment when you must quit talking to God about the mountain in your life and start talking to the mountain about your God. You proclaim His power. You declare His sovereignty. You affirm His faithfulness. You stand on His Word. You cling to His promises.”

Draw the Circle, by Mark Batterson

This statement reaffirms the importance of trusting in God’s ability to move mountains. Giving our fears and worries to Him and watching Him move on our behalf- it isn’t easy but is such a symbol of having FAITH. I know He has amazing plans for our boys. I know that each one of them will grow to bless others around them. It is my hope that they understand how wonderful it is to see the miracles of God, give God the glory and share that with others.

Thank you for continuing to stick by our sides during this journey. God knows how much we love and appreciate each of you. We hope you know this as well.

❤️ Amy

For those of you who have asked:


A couple of playlist favorites lately…

Words Have Meaning and Names Have Power

Adam and I had a hard time picking out names for a long time. We had 4 boy names to come up with between the twins and had already come up with two when naming Aaron. After the news at our anatomy scan about Baby A’s heart, I felt that we should look to the meanings of names instead of just names themselves. We wanted strong names that represented faith and this journey.

Baby A’s name was chosen quickly after searching for a special meaning.

Caleb Carson

Caleb is a Hebrew masculine given name. The Hebrew meaning offered for Caleb is “faithful, devotion, wholehearted, bold, brave”. This is on the basis of its being actually a compound word, a phenomenon quite common in ancient Hebrew. Col (כל, Kaf + Lamed) = “all” or “whole”Lev (לב, Lamed + Bet) means “heart”. Therefore, Caleb (or Calev as pronounced in Hebrew) would actually mean “wholehearted”. This might be due to the Biblical Caleb, a companion of Moses and Joshua, being noted for his astute powers of observation and fearlessness in the face of overwhelming odds.

As soon as I saw that Caleb means “wholehearted” and that biblically, Caleb followed God wholeheartedly, I knew this had to be his name. He was noted for being fearless in the face of overwhelming odds. What a sweet testament to the journey this baby is on. Carson is also a family name and my brother’s middle name.

Baby B’s name soon followed with meaning close to my heart.

Gabriel Cameron

Gabriel is a given name derived from the Hebrew name “Gabriel” meaning “God is my strength” or “God is my strong man”. The name was popularized by the association with the archangel Gabriel. The angel Gabriel is an angel of God who is mentioned by name three times in the Bible when he brought messages from God to Daniel, Zechariah, and Mary. Two of those instances were messages that he brought of the coming of two baby boys. (A long-awaited son to Zechariah and Elizabeth, and the message to Mary that she would soon conceive Jesus).

I have felt God’s strength throughout this pregnancy and have relied on it throughout this entire time. Being open and completely humbled by the messages of God has brought to light so many ways He has used prayer, family, friends, doctors, and those we don’t even know to show us how this “reckless love of God” is all around us. We thought it would be nice for those praying for these sweet ones to have specific names to commit to prayer.

Caleb in 3D at 23 weeks and Gabriel in 3D at 27 weeks.

What a difference even 4 weeks of growth makes!

Update on Our Boys

I had a prenatal appointment this past Tuesday. They did routine bloodwork, shots and the glucose test. Everything went well and results came back fine! Dr. Lowe measured my growth so far and I am measuring at 45 weeks!! No wonder I am so short of breath lol!

The next day I had another ultrasound with the Maternal Fetal office in Greensboro. I woke up that morning with uneasiness and anxiety. Something I have struggled with is the feeling of dread leading up to each appointment. I know it’s the PTSD-like reaction to the rollercoaster of a journey that this has been. I really had to pray on Tuesday and ask God to carry me through this. Adam had to stay with Aaron since icy weather delayed daycare from opening. Going alone isn’t easy since I had to be alone when learning about Caleb’s heart. I prayed for God to just give me a peace going into this ultrasound.

When greeting our ultrasound tech, who I love, she informed me that we would be seeing now a third MFM doctor, Dr. Decker, who she said has such a warm presence and bedside manner. When I met her, I knew God heard my prayer. She put me at ease immediately and was so sweet and reassuring. The other doctors we have met there have been very knowledgeable, but very clinical in delivering facts. Isn’t it amazing how God meets us when and where we need Him?

The ultrasound tech and Dr. Decker informed me that the boys are growing SO well! Fluid looks great and currently Caleb is measuring at 2.2 lbs. and Gabriel is at 2.3 lbs. You really can’t get much better than that. It puts them in the 41st and 45th percentile- which is the scale that singletons are measured by and this means they are right at about average growth for a singleton. This is really good for twins! This is SUCH a blessing! Being as big as he can get will help Caleb through any procedures he needs after birth. We continue to pray for good growth for these babies, as prematurity only adds to any complications.

Prayer Requests

We have heard from other families that have gotten to the HLHS diagnosis by birth, specifically families that have been able to have the Biventricular Repair surgery that I mentioned in the last post. I asked about whether Levine Children’s Hospital in Charlotte, or Boston Children’s Hospital would be the best route. Those who do get care for their child in Charlotte shared they did the Bivent surgery in Boston. Many others shared they wouldn’t go anywhere else for such a specialized surgery- Boston hands down. This has certainly caused us to really think about options that we could be faced with not long from now. If Caleb’s heart “qualifies” for the bivent procedure, we know this would be the best place for him. If his critical aortic stenosis develops into HLHS, we feel confident that Charlotte would do great with this surgery. Ultimately, we do hope he would be a good candidate for the Bivent repair. Having both ventricles makes a world of difference in the long-term health and outlook for his life. We are asking for prayers for guidance in the coming weeks when discussing this with our pediatric cardiologist. We are hoping God opens those doors for us and makes it clear the path we are supposed to go down.

We are also praying on the logistics of potentially delivering in Boston. This would require us to reach out to organizations that support families by helping with their stay, parking, lodging, etc. This would also mean being away from Aaron for weeks. It wouldn’t be easy, and we would need to look into so many different things, but we are giving this to God for now. We are praying that Caleb is born with the least severe condition that requires the least invasive repairs. Until then, we also pray that we continue to become more and more prepared to be the best parents and caregivers to these boys, no matter what the journey entails.

As always, thank you for EVERY single prayer and for being the village of support that provides us more strength and love than you even know!

❤️ Amy

“You Have Never Failed Me Yet”

Today we had our second fetal echocardiogram, 4 weeks after the first one. They are so long and there is so much waiting involved. After an hour-long ultrasound, and waiting for the doctor, we got the news of how Baby A’s heart looks. We have prayed long and hard for damage to slow down and to not see a drastic decline in hopes that by the end of this pregnancy, he wouldn’t have the worst of prognoses to overcome.

The doctor shared that there is virtually no difference in the size of that left ventricle! There isn’t anymore damage than what was seen 4 weeks ago! All blood flow to other organs looks good and he is growing well. THIS is the power of prayer and evidence of HIS goodness! We don’t know what the weeks ahead will bring but we are rejoicing that we are not going downhill yet. Is there scarring? Yes. Is that left side struggling to squeeze because of the pressure build up due to his aorta? Yes. Could this progress and decline by the end of this pregnancy? Yes. BUT GOD! Nothing is impossible to Him. We are still praying and believing Him for a miracle of healing, or to at least continue to slow down this damage.🙏🏻

I asked the doctor if it would be feasible to get to delivery and there not be a huge decline in damage. He said, though it is likely this will happen, it is fair to have hope that it doesn’t based on how things look. We are happy to hear that it’s reasonable to have any amount of hope- though we have this no matter what we hear from doctors. I am keeping a prayer journal now. I want to keep track of my prayers so that I can give God the glory when He answers. Last night, one line from my prayers was, “Give us news of encouragement tomorrow”. I am claiming that answer to prayer today! I can’t explain the peace that this gives me. In the midst of a future that is uncertain, in this moment, I find peace. The strength of every family member, friend and colleague is carrying us through this. I don’t think you could even understand how much every word spoken to God on our behalf means to us. The depth of that love, the time it takes, the faith you are putting into action, it is the most amazing gift we could ever hope to receive.

Aortic Stenosis Repair vs. Hypoplastic Left Heart Syndrome Repair vs. Biventricular Repair

We would love for Baby A to never get to the severity of Hypoplastic Left Heart Syndrome and somehow only need repairs for his Critical Aortic Stenosis. After the prayer of miraculous healing, this would be our second prayer of course. In my recent research, I came across parents of babies that were able to avoid the 3-stage surgeries that are commonly used to repair Hypoplastic Left Heart Syndrome. As I mentioned in previous posts, HLHS requires 3 surgeries that allow the one working ventricle to do the work of two ventricles. Ultimately, this does cause potential harm to other organs and potentially require a heart transplant later in life. When digging deeper, I came across something called “Complete Biventricular Repair” or “Biventricular Conversion”. This procedure(s) is a possibility for babies who have a borderline (small) lower right or left ventricle. It involves creating two functioning ventricles in a single procedure. If that left side is too small, then the small ventricle may need to be rehabilitated through a series of procedures called “staged recruitment”. The ultimate goal is to have a heart with two pumping ventricles.

I asked our doctor about this and what his thoughts were on this procedure. He thinks that if our baby’s left ventricle doesn’t get to a high level of severity, this could be a good option for him. There is more risk, but long-term, these individuals grow up with less damage to other organs, a more robust functioning heart and less of a chance of needing a heart transplant down the road. Levine Children’s Hospital in Charlotte evaluates for this and does these repairs. The team in Boston, at Boston Children’s Hospital, pushes the envelope a little more and does more advanced cases. We will have the team in Charlotte, and likely in Boston evaluate our case for this potential procedure by our next fetal echocardiogram.

Please join us in prayer that we have this option down the road. Today’s appointment was encouraging and knowing that we aren’t in a worse position than we were 4 weeks ago is certainly good news! Click on the icon below for more detailed information!

❤️ Amy

Drawing the Circle

Today we had another ultrasound with our maternal fetal medicine. This ultrasound was focused on growth of the babies and not necessarily Baby A’s heart. From what I could see, and from the images we have been looking at up until this point, it looks like the left ventricle is still about the same size as the right. It is still critical aortic stenosis and the left side isn’t pumping as well, but I’m hoping there isn’t too much damage-causing change. Our next Fetal Echocardiogram is on December 3rd.

Both babies are growing very well and look great otherwise! Baby A is measuring around 1 lb. 3 oz. and Baby B is measuring at 1 lb. 2 oz.! They are precious to watch, so close together. It’s amazing that there are two babies, even now it is still hard to believe!

The doctor said that Baby A’s Critical Aortic Stenosis could deteriorate, as most do, and become Hypoplastic Left Heart Syndrome. It could deteriorate slowly and not become HLHS and it could remain about the same. This is “at the heart” of what we are praying about right now. My good friend, Amber Fitts, suggested a book to me, Praying Circles Around Your Children, by Mark Batterson. I since have ordered the original book in this series, The Circle Maker, and companion title, Draw the Circle. I have finished Praying Circles Around Your Children and have started The Circle Maker and I can say that these books speak right to the meaning, the purpose, and the significance of prayer.

“Drawing Circles” around a specific prayer and believing God can perform those seemingly impossible miracles is exactly what having Faith is all about. This excerpt from the book really speaks to this-

There is nothing God loves more than keeping promises, answering prayers,
performing miracles, and fulfilling dreams. That is who He is. That is what He does.
And the bigger the circle we draw, the better, because God gets more glory. The
greatest moments in life are the miraculous moments when human impotence and
divine omnipotence intersect, and they intersect when we draw a circle around the
impossible situations in our lives and invite God to intervene.
I promise you this: God is ready and waiting. So while I have no idea what
circumstances you find yourself in, I’m confident that you are only one prayer away
from a dream fulfilled, a promise kept or a miracle performed.

Mark Batterson, The Circle Maker

Our continued prayer is that these babies will continue to grow exactly as God would have them grow. We pray God lays His hand on Baby A’s heart and performs miracles that science cannot control right now. Only God can help his heart to slow the damage and create a possibility of less invasive and severe intervention after birth. We believe He has a beautiful plan for these two and our family. It’s difficult when you’re in the thick of it, but God has only given us the GRACE for THIS day. His word is a lamp unto our feet and a light unto our path- the part of the path we are on right now. Trust isn’t easy but the battle is His and we sing, “Thy will be done”.

I have to share a necklace I ordered and I can’t wait to get it in the mail today. Such a fitting verse and message for this journey!

I encourage you to listen to this song, turn up the sound and take in the words. What an amazing, uplifting reminder 🙏🏻

**Also, please subscribe to the updates for this blog at the bottom of the “Blog” page in the menu**

❤️ Amy

“Battle Belongs”

When all I see is the battle
You see my victory
When all I see is the mountain
You see a mountain moved
And as I walk through the shadow
Your love surrounds me
There’s nothing to fear now
For I am safe with You

So when I fight I’ll fight on my knees
With my hands lifted high
Oh God the battle belongs to You
And every fear I lay at Your feet
I’ll sing through the night
Oh God the battle belongs to You

And if You are for me
Who can be against me (yeah)
For Jesus there’s nothing
Impossible for You
When all I see are the ashes
You see the beauty (thank You God)
When all I see is a cross
God You see the empty tomb

So when I fight I’ll fight on my knees
With my hands lifted high
Oh God the battle belongs to You
And every fear I lay at Your feet
I’ll sing through the night
Oh God the battle belongs to You

Almighty Fortress You go before us
Nothing can stand against
The power of our God
You shine in the shadow
You win every battle
Nothing can stand against
The power of our God

Almighty Fortress You go before us
Nothing can stand against
The power of our God
You shine in the shadow
You win every battle
Nothing can stand against
The power of our God

Almighty Fortress You go before us
Nothing can stand against
The power of our God
You shine in the shadows
You win every battle
Nothing can stand against
The power of our God

So when I fight I’ll fight on my knees
With my hands lifted high
Oh God the battle belongs to You
And every fear I lay at Your feet
I’ll sing through the night
Oh God the battle belongs to You

Oh God the battle belongs to You