Adam's Heart - Part 7

Mark here again. It has taken several days to continue this story - the reality of life with a newborn and two other kids is fun, but time consuming!

The moment when Adam was taken away to start his surgery was, for me, the emotional low point of this whole journey. Parents like to be in control of everything surrounding their children. That’s certainly one of the challenges of parenting – the reigns of control progressively get placed in our kids’ hands, more and more with each passing year. But with a newborn, we control everything, and that is the great burden and responsibility of parenting.  At least that is the perception. Deep down, I believe God allows us to control many aspects of our children’s lives, but ultimately he is the one controlling everything, them included. Over the course of our first few days in the hospital, many things were out of our hands, from the giving of a pacifier to an IV catheter directed through his veins. But at that moment when Adam was wheeled away, it was like he was no longer ours. Everything about him would be in the hands of another, and there was nothing we could do but wait and pray. I took solace knowing that hundreds of friends were thinking of Adam and offering countless prayers on his behalf.

We spent the hours hanging out in the waiting area on the 17^th floor with Katherine’s parents, and waiting for the next update from Amy, the nurse practitioner. They gave us a buzzer, just like the kind you get at a restaurant, that would go off when she was on her way down. As the day progressed, our confidence grew and our spirits lifted. The updates would come, and each time they were very encouraging. We even spent a while laughing our heads off while Katherine’s parents worked on their Texas accent.  During the next to last update, Amy told us they were getting Adam closed up, that things had gone very well, and either she or Dr. Fraser would meet with us. She told us that usually Dr. Fraser would meet with the parents after the surgery, but he might not be able to join us today – a heart had become available, and he would be transplanting right after Adam’s surgery was done and through the night. Incredible!

Amy explained in detail all the equipment we would see attached to Adam when he came out of surgery. It was a long list, and intimidating to listen to. But it was really helpful to hear what each of these devices did and why it was important. We had seen other babies come out of surgery, so we had an idea of what to expect. People told us it would be hard to see him like that, but we didn’t find it that way. It was just nice to see him again, with the knowledge that the doctors were confident about how things had gone with his heart surgery. Adam will read this blog someday too, so I’m going to write down all his external attachments for the sake of detail:

1.       Ventilator with a tube in one nostril. It was held down firmly with tape, which obscured a lot of his face.

2.       Feeding tube inserted in the other nostril. Initially this drained excess stomach acid, but was used for his first feeds after the operation.

3.        A large patch on his forehead, similar in function to the pulse oximeter used on fingers. Measured brain oxygen levels during and after surgery.

4.       Two chest tubes in his abdomen, used to drain excess fluid from the chest cavity.

5.       One dialysis tube in his lower abdomen, used to flush toxins from around the organs. It’s called dialysis because the purpose is to perform some of the cleansing function that the kidneys ordinarily would do. Many of these devices were in place to relieve his body from some of its normal workload.

6.       A catheter for urine.

7.       A PICC line (Peripherally Inserted Central Catheter). This was actually one of the first things he got after entering the hospital. Babies’ veins and skin are so thin that IVs don’t work for an extended period. This allowed ready access to deliver medicine, nutrition, anything.

8.       An arterial line inserted near his groin. This is sort of like a PICC, but goes into an artery instead of a vein. This allowed constant blood pressure monitoring and provided a way to get oxygenated blood samples without the need for constant pricking.

9.       An aortic line. This was similar to the arterial line, but was directed straight into the aorta. Used simply to get an exact blood pressure reading in a critical area.

10.   A pulse oximeter around his foot, used to measure blood oxygen levels.

11.   Five electrode pads place around his abdomen to measure heart rhythm and breath timing.

12.   One temperature pad applied to his abdomen that connected with the heated bassinet to keep him not too hot or cold.

We finally got to see Adam early that evening. Yes, there was a lot of “stuff” on him, but it was still great to see him and know that he was now starting his recovery. He had his own nurse, and would be well taken care of through the night. We made the trek down to the Ronald McDonald House and got a good night’s sleep.

To be continued…

Lots of equipment and lots of medicines right after the surgery.

 

I like the balloons the nurse drew on his dressing.

 

 

Adam's Birth Story - Part 2

Adam is 4 weeks old today.  Mark is still diligently writing up his heart story, but I wanted to also finish his birth story before I completely forget it!  It seemed like a somewhat traumatic labor, as I was close to having a c-section several times, but now in hindsight, it seems so simple compared to the weeks in the hospital that followed.  I do remember being relieved after Adam was born that I was done with this phase --- done with pregnancy bed rest, done with laboring with a baby.  I was so delighted to meet Adam, and excited to hold him in my arms, but I was also glad to be done with the worrying that accompanied the end of my pregnancy and the labor.
 

So to continue on with the story…

At around 8:40 the Pitocin was started.  I was already having mild contractions, and I don’t remember them picking up quickly or strongly with the medication.  I was very glad to be feeling them in my abdomen this time --- I had back labor with both Ben and Katie, and was expecting to have the same with Adam.  They definitely seemed much more manageable when they were not radiating from my back!  I found laboring on the exercise ball leaning over the bed to be the most comfortable, so spent more time there.   Mark was prepared to be my male doula, since we opted to go solo for this birth and not hire the doula we used for both Ben and Katie’s births.  He did do some massage on my back, but with a more standard labor, I did not need the massage as much this time, and I also found that I just wanted to be quiet and alone for the laboring – something I was not expecting.  I found it easiest to just be able to focus on myself through the contractions.  We played some nice lullaby music through our computer, and that seemed sufficient.

Unfortunately, though, based on Adam’s position, being upright on the exercise ball was not very conducive to monitoring the baby’s heartbeat, so our nurse Ann had to keep coming in and adjusting the monitoring belts.  At some point, Adam’s heartbeat would drop too much or for too long during contractions, so they really wanted to monitor his heartbeat.  As a result, I was asked to get back in the bed.

At around midnight, my progress was checked again.  I was dilated to 4 cm, but the baby was still very high.  I believe this was the first indication we had that things were not progressing as well as we hoped, and Dr Del informed us that we could continue as long as the baby was cooperating, but we’d “need to talk” again if we couldn’t keep his heart rate up.   I remember understanding at this point that we might be in for a c-section, but also feeling fairly calm about the whole thing.  I trusted Dr. Del, and I knew he was doing everything he could to work with me to try to have a vaginal delivery --- but we were all in agreement that a healthy baby was the first priority!  I was very grateful at the end to have avoided a c-section, and extremely grateful to have avoided one when we ended up in the CVICU when he was 6 days old --- our experience would have been so much harder if I was also trying to recover from surgery myself.

Dr Del stopped the Pitocin to give Adam some time to adjust and ensure his heart rate was able to stay up, and I put on an oxygen mask.  It was about midnight at this time.

Now that I was needing to labor in bed, and I was bracing myself for a longer labor and maybe needing a c-section, I decided to get an epidural.  I received it around 12:30 AM, and it actually took several attempts to get it into the right place --- apparently my back turns a bit.  I ended up with a rather large bruise from the repeated attempts, but fortunately no other side effects. 

Around 1:50 AM, Dr. Del came back to check on me, and had me move into a “runner’s position” to help encourage the baby to move downward and also rotate.  I was turned onto my side, almost on my belly, with one leg up in a stirrup.  Not very comfortable, and I was very glad to have the epidural for this. J

For the next couple of hours, the nurse repeatedly moved me to different positions, depending on what seemed most agreeable to Adam (based on his heart rate).  I could hear his heartbeat on the monitor, and I would hear it slowing down considerably during some contractions, and would be willing him to pick it back up afterwards.  When it was sometimes slow to come back, I could anticipate another visit from Ann to have me move to a new position.

Around 4 AM, I requested to have the epidural increased, as I was feeling quite a bit of the contractions, and now I was at the mercy of whatever position was best for Adam – not what was most comfortable for me.  The Pitocin was also turned back on, and the monitors were watched very carefully.  Somewhere at this point, my blood pressure and heart rate also started to increase, as during one of Dr. Del’s visits, he asked a lot of questions about any symptoms I might be experiencing due to this. 

At 4:45 AM, my progress was checked again and I was 8 cm dilated.  The baby still seemed to be turned somewhat sideways, but I believe Ann was pleased with the progress.  I think she started trying to page Dr. Del at this time to let him know it wouldn’t be much longer.  Unfortunately, apparently he had fallen asleep in the on-call room, and he didn’t respond until it was time to actually push the baby out!  Fortunately, Adam’s heart rate was stable during this time, so it was not urgent that he be reached.

Within the next half hour,  I noticed that the baby seemed to be moving down.  A table for delivery was set-up, and I got excited that perhaps I would get to deliver this baby vaginally after all!

At 5:30 AM, I was checked again – I was fully dilated, but the baby was still a bit high and needed to rotate some more.

Shortly thereafter, Dr. Del was finally found, and he arrived and we had a short conversation about how to push.  One big push got Adam’s head out, and then with a second push, his shoulders and body was out.

I asked Dr. Del right before pushing if he thought the baby was going to be a boy or girl.  He said based on how he was behaving in labor, he thought Adam would be a boy.  He was right!  I still thought he was going to be a girl, so I was a bit surprised to meet a boy.

Mark cut the umbilical cord, and Adam was put immediately on my chest while the nurses cleaned him off, and Dr. Del delivered the placenta and then sewed me back up (a small tear).  I had never looked at the placenta before, so we asked to see it, and the nurse gave us a tutorial about the placenta. J

Because the hospital was so crowded, we remained in the labor room for the rest of the day, and were only moved to the post partum room that evening.  Grandma and Grandpa brought the kids for a visit that afternoon, and Dr. Del came to check on me the next morning (Saturday), and discharged me to go home that day!  The pediatrician did not check on Adam again until that afternoon, and mentioned the heart murmur, so we had a little worry about getting to actually take Adam home that night --- she wanted to run a few tests (which all came back normal), and if any were abnormal, then we’d need to stay at the hospital for another night.  I was regretting the decision for an early discharge, as if Adam needed to stay, we’d have to move to another area of the hospital, since I had already been discharged.  But the other heart tests came back normal, and since we were scheduled to see the pediatrician again on Tuesday, she felt comfortable sending us home.  It’s so strange to think that just a few days later, our lives would be so very different again.

As I have mentioned in Adam’s heart story, I do feel grateful for the few days we had at home with Adam – and grateful that we ended up at Texas Children’s Hospital for his surgery.  He was born at Memorial Hermann Children’s Hospital, as that is where my ObGyn is affiliated, but I believe TCH has a more renowned pediatric heart center.

So that’s Adam’s birth story!  I intended to tell it with a little more emotion, but I am a bit worn out from sharing emotions at this point.  And it seems like such a minor story in comparison with his stay at the hospital for heart surgery.  So the experience itself seemed rather intense, but the memory of it is less so. 

We sure do love this sweet boy!

 

 

 

 

 

 

 

 

Adam's Heart - Part 6

The 17^th floor had the waiting area, conference rooms, a special room for pumping breast milk, and the Ronald McDonald House Family Room – an inviting space with dining tables, a kitchen, public refrigerator, and cabinets stocked with snacks. Down on the 4th floor, next to the NICU, was the Ronald McDonald House residence for parents with children in the ICU. They had 20 guest rooms there, and we had to request each morning to have a room for that night. Those 20 rooms were shared between the CVICU, NICU, and PICU, so getting a room was never guaranteed. Priority was given to those parents whose kids had the biggest medical need, such as immediately following surgery, and the rest of the rooms were assigned via lottery. There is another, off-site, Ronald McDonald House that provides residence for families who have travelled from out of town for their kids to receive treatment. Each day around 6pm, we’d find out if we got a room for that night. And fortunately, after our first full day in the hospital, we did get a room at the RMH. Like most, we had heard of the Ronald McDonald House, but we had no idea what an amazing blessing this place is until that first night. The last 24 hours had been so trying for us – we were completely spent emotionally. It was so refreshing to spend the night with each other, to have a little space just for the two of us. As Katherine mentioned in her post, this was an amazing time of bonding for us, leaning heavily on each other as we took turns on the emotional roller coaster. One friend urged us early on to “take care of each other” during this process. This was great advice, and those nights in the Ronald McDonald House were the cornerstone of being able to do that. Among the blessings encountered during our time at Texas Children's was that we got a room every night until we left the CVICU.

The weekend was a period of waiting. Adam was stable, just waiting for his turn in the operating room. While we knew he needed the surgery, and waiting around was unproductive, we were anxious about the reality that he would be undergoing open heart surgery and that there are always risks. There was a part of me that wished the day would never actually come. We spent lots of time with Adam, holding him and trying to talk to him and talk near him, so he’d still hopefully have the comfort of familiar voices. We had some trouble deciding how to talk to Benjamin and Katie about what was going on with Adam, and why we were not home with them. We spoke with a staff member at the hospital called a Child Life Specialist, who guided us on best to handle this with the other two kids. We told them about Adam’s heart, and that he would be having surgery and would be in the hospital for a little while. On Sunday afternoon, we had them come for a visit. The Child Life Specialist met with us and them together and was really good about talking to them and preparing them for what they’d see in the CVICU. She showed them pictures of some of the equipment that would be there, and we talked some more about the heart, what it does, and how Adam’s needed surgery to work right. They proudly wore their “Child Life Approved” stickers and we went upstairs to visit little brother. They did fantastically! Ben had a good time pointing out the devices he had seen in the photos, and they both just seemed to think it was fun to check out someplace new. They talked briefly to Adam, but didn’t seem alarmed by the wires coming out of his swaddling blanket. It was really fun to have them there and to be together.

Sunday night, Katherine got a phone call. It was one of the cardiologists, and he said there had been a cancellation in the schedule and they wanted to perform Adam’s surgery first thing in the morning TOMORROW! We knew cognitively that this was a good thing, but this hit us emotionally like a ton of bricks. One of our first thoughts was, “Why was there a cancellation? Nobody cancels heart surgery. Did somebody die?” (It turns out the scheduled patient had a fever.) We spent some time talking with the attending cardiologist that night by Adam’s bed, and he assured us Adam was chosen to fill the slot not because his condition was deteriorating, but simply because he was the most “ready.” All the research and imaging had been done, and the surgeons had done their homework on his condition. His VSD was rather large and uncommonly positioned, so everyone felt it was in his best interest to perform the single, more complex surgery to correct both problems. He told us that Dr. Charles Fraser would be performing the surgery. He is the head of cardiac surgery at Texas Children’s, and the attending described him as a “famous” man in the nationwide cardiac community. Good news indeed. Barring something unexpected from him, the morning surgical conference would be just to ensure everyone was on the same page regarding Adam. Still, we shed a lot of tears that night.

We were asked to be there early the next morning to sign consent forms and be present for the morning rounds of the surgical team. I had assumed there would be a mountain of consent forms before a procedure like this, but that turned out to be false. There was one for anesthesia and one for surgery that basically gave the surgeon the right to use his best judgment if they encountered something other than what was planned. The Monday morning surgical rounds are a big deal. We knew exactly what was happening when about 25 white coated men and women walked slowly into our part of the ICU. A cardiac fellow would address the group with all sorts of medical information, then a few of them would look over the baby and listen through their stethoscope. Without seeing his badge, we had a pretty good idea which one was Dr. Fraser. He was tall, and carried himself with the air of an elder statesman. Quiet, yet commanding. After the team finished their review of Adam, he sat down with us for a few minutes and went over the plan for his operation. He acknowledged that anytime you’re talking to a cardiac surgeon about a ten day old baby, it was a big deal, but he shared his confidence about the surgery. We felt confident too. Here’s a link to his biography: Dr. Charles Fraser.

The next visit was from the surgical nurse practitioner. She would be our liaison to the surgical team during the operation. She stayed with us for a while to answer all our questions and described how she would give us updates every hour or two during the surgery. It seemed like an eternity, but we then waited for an hour or two for things to get started. We took turns holding Adam, knowing that it would be at least a few days before he could lay in our arms again. After the surgeons finished their conference, the anesthesiologist came by to talk with us. He was very businesslike, but put us at ease ensuring he had done thousands of operations with Dr. Fraser and would be keeping a very close eye on Adam during the operation. Then it was time. We placed Adam in his bassinet, paused for a photo, then the anesthesia team disconnected Adam from his fixed monitoring devices and wheeled him away.

Simple accomodations with Ronald McDonald, but more welcome than the finest hotel.

 

The kids had a great time at the Children's Garden at TCH.

 

 

Taking turns holding Adam before surgery.   

 

 

One final photo before saying goodbye. 

 

 

 Dr. Fraser

 

Adam's Heart - Part 5 (an aside from your mom)

This is mom (Katherine) again writing – your dad is doing a very nice job chronicling our time in the hospital – which is good, because already, just over a week since your discharge, the days are already starting to blur together.  Yesterday, we took you back to the hospital for your one-week post op appointment with the surgical team.  They took another x-ray of your chest, listened to your heart, and removed your stitches.  Your dad and I had different reactions to being back at the hospital: he felt comfortable, remembering all the many blessings we received while you were here.  I felt dread – while I too want to remember all the comfort and love we received through this process, I also want to forget a little --- to forget the pain and worry, and to move beyond this part of life and find our new “normal.” 

But there are a few things I want to remember in this process – so I am taking a few moments here to record them – so that I will remember them, and so that you will too.

First, I want to remember how resilient the human spirit is.  You could probably ask any mother what her greatest fear is, and she would likely state that it would be a tragedy occurring to one of her children.  That’s certainly true for me.  But I have also been plagued by anxiety since I became a mother at the thought of something bad happening to one of my kids --- a bit more than just the standard “fear” – but more along the lines of a belief that I would not survive a tragedy occurring to one my children.  So here we were – thrust into the ER not knowing what was wrong, and then facing a very serious emergency situation with our 6 day old son.  While we cried a LOT in those first few days, I was surprised by the calm that overtook me early on.  I knew it was a real possibility that you might not survive all of this, and while it made me very sad, I did not panic – which I would have previously thought would be my reaction.  I was sad and worried, but I also knew that I would be okay, whatever happened, and that we would find joy in our lives again.  I believe this was a gift from God in this process.  And as I watched the other parents with children in the CVICU or other newly post-partum moms making trips to pump their milk at the milk bank, I noticed that they too were not constantly sobbing.  They looked tired, and there was certainly an air of sadness, but not the constant despair I would have expected in this situation.

And one of the greatest blessings in all of this is how it brought me and your dad even closer.  We leaned on each other a lot during our stay at the hospital.  We took good care of each other, and I was again reminded of the “rock” he is during times of stress.

You could actually tell when a “new” family had arrived at the CVICU waiting area – as there were a lot of tears.  But once that family got settled in, they also got into their “routine” – whatever that was, and you did not witness a lot of meltdowns or despair.  People simply carry on with whatever their circumstances are.

We quickly fell into a routine – and it actually felt very busy, despite the fact that there was little that we could actually “do.”  I was pumping milk for you every 3 hours, which often required a trek across the hospital to the milk bank, as the pumping room on the 17^th floor was often occupied by another mother.  The whole process took about 45 minutes to set-up the equipment, pump, clean the parts and deliver the milk to either the milk bank of the CVICU freezer.  After the initial learning curve and frustration in pumping, I actually did not mind this process that much, as it made me feel like I was actually “doing” something that would make a difference.  In the end, I pumped over 100 bottles for you!  We took half of them home, and I am in the process now of donating the other half to the milk bank for other babies to have.  The one “frustration” of pumping, though, was that it seemed like something was “happening” every time I needed to go pump – we would be on schedule to consult with a doctor, a visitor would be arriving, or Ben & Katie would be visiting us.

Another aspect of this process that struck me is how people make that transition to accepting that such an emotionally intense experience is actually happening to YOU.  This is always the sort of thing that happens to someone else – and I think we need to inherently believe that these things won’t happen to us or we would always be plagued by worry and fear.  I remember seeing newly post-partum mothers with their big bellies thinking “wow, that woman is pregnant AND she has a child in the ICU” just to realize that she was no longer pregnant and she was just newly post-partum.  And it always made me sad for her that this is how she was spending her recovery – hobbling around the hospital, visiting her baby amidst all the wires and tubes.  And then I would catch a glimpse of myself in a mirror and realize that I was one of these moms too.  I think in the first few days in the ICU, I felt like the exception – like somehow I had the one healthy baby in the room, since you hadn’t had surgery yet, so besides the tubes and wires, you were just a normal baby.  I also felt very grateful for the 6 days we had at home – as most of the babies were diagnosed in utero or at the hospital after delivery, so came straight to the CVICU.  And fortunately, my body seemed to heal much more quickly than in the past, and I was able to endure all the running around the hospital and being limited to holding you upright in hard chairs.  And I am so grateful that you are my third baby, and that I knew already how to breastfeed and how to care for a baby – I can only imagine how hard all of this would be for a first time mother. 

But as it sank in that I was indeed not so very different from these other mothers with babies in the NICU or CVICU, I do remember a level of mourning that this was our experience.  I was so intending to savor these early newborn days with you, since you are our last baby.  I am glad that I did indeed take it slow with you in our early days home.  I spent a LOT of time holding you in the recliner and was not eager to try to get too much done around the house.  But once we were in the CVICU, I felt marginalized – I had to push to do the things that were important to me as your mom.  They took excellent care of you in the CVICU, but their priority was caring for babies who had heart surgery – which allows minimal handling by parents.  You were in the ICU for three days before your surgery, and you were stable but not allowed to eat.  I couldn’t bear having you lay there all by yourself, and I wanted you to feel held and loved.  So I asked to hold you “kangaroo style”, which is skin-to-skin.  So I wanted to unwrap you from your swaddling blanket and take off my shirt and hold you against my chest.  After all, you were only 6 days old!  The first time I requested this, we had a male nurse who was totally supportive, but it required (by law, I guess) that we be completely blockaded from view, so they had to pull around all these privacy screens.  Later nurses were less accommodating, and while they agreed to it (I think they had to, since the doctors said it was okay), they weren’t terribly helpful or encouraging, and made me feel badly for doing it.

Post-surgery, the other thing I had to push for was to be allowed to nurse you.  We actually went back and forth for two days before I got to nurse you, as one of the doctors would agree to it, once a certain condition was met (ie you were tolerating enough milk from your tube feeds or bottle feeds), but then the condition would be met, and the next shift would begin with a different doctor, who would want a different condition met.  Again, I am so glad that I was a “seasoned” mom in all of this, as I did not receive much support in transitioning to the breast feeding, and no one really asked how the pumping, etc. was going to make sure I was keeping up a supply for you.  I think this would have been a different situation in the NICU.  Once we started nursing, we were able to continue doing so exclusively.  I asked the night nurse to call me when you were hungry (we had our first nursing session in the early evening, about one week after your surgery), so I came every three hours during the night to feed you.  Again, they would have to pull the privacy curtain all the way around to do so, but the nurse didn’t seem to mind – and it was less work for her than giving you a bottle. J  Once you began nursing, we were in the CVICU for less than 24 hours before we were moved to the main cardiac floor, where we had a private room, so nursing was no longer an issue.  Although, again, we were “warned” by the nurse practitioner once we arrived that we were probably going to need to supplement with high calorie formula to make sure you gained weight --- but you showed them!  You were and are a fantastic nurser, and we never did need to do anything but let you eat when you wanted to!

One other thing that I remember “realizing” as we settled into the reality that this was our reality, is how much we need hope in these situations.  On the NICU floor hallways and in the milk lab  are many pictures and brief stories of children who have defied the odds and survived and thrived after leaving the hospital.  I remember scanning these wanting to see something that resembled our story in there – to give me hope that we too would have a beautiful story of recovery worthy of hanging on the wall.  And then I would catch myself searching for these nuggets of hope and become sad and a little angry that I was in the position of needing this kind of encouragement to just have a normal life with my son.

Much of this struggle was during the days leading up to your surgery.  We watched babies come and go out of the CVICU, and particularly, I think seeing babies fresh out of surgery and in the first few days of recovery was helpful to avoid the shock and despair that might have otherwise occurred when we first saw you come out of your surgery --- completely sedated and most of your tiny body covered in wires and tubes and bandages.  And besides the scary evening where we were informed that you might be having seizures, your recovery was smooth, so most of the fear was in the anticipating and waiting.

And now here you are, almost four weeks old!  And you are behaving like a normal newborn --- you are much more mellow than your brother or sister were at this age.  We ALL love snuggling with you – Ben and Katie included!  I don’t know if your temperament is just how you are, or if it is a result of all you have been through, but we just absolutely adore you, our sweet Adam.

And now, I will let your dad continue on with your story…

Adam's Heart - Part 4

The CVICU was very different from the NICU. It’s more what you’d imagine an ICU to be like – lots of bright lights and medical equipment everywhere. Adam was in bed 17, located in a large room with three other babies. There was an impressive collection of equipment surrounding him – monitors with screens that continually showed his vital signs, and a stainless steel column that had ports for oxygen, air, vacuum, etc. There were also private rooms lining the hallway, and it was heartbreaking to see some of the kids in those rooms. They were typically older, from toddlers to teenagers, and some of them looked to be in pretty bad shape. We would learn later that at least some of those who had a lot of equipment and appeared to be in bad shape were just the opposite. They had recently undergone their surgeries and were on their way to recovery.


It was now well past midnight, and we were dog tired, hungry, and emotionally exhausted. Adam got situated in his new bassinet, and was connected to several different monitors to keep tabs on him. He was not allowed to eat anymore. The doctors were concerned that, because his stomach was not getting sufficient blood flow, the milk would just sit there and eventually cause a rupture. This was tough for us, Katherine especially. We are big believers in the importance of breast milk for babies, and there was a lot of worry that he would forget his breastfeeding skills over the next several days while getting nutrition solely from an IV. The good news at this point was that the prostaglandins were working. His heart rate was still high, but his breathing had settled into a fast but acceptable rhythm. Katherine stayed next to him, and I went home to gather some toiletries and fresh clothes. When I got back, we tried to get a little sleep. The CVICU doesn’t have rooming-in arrangements for the parents. There was a large waiting area on the 17^th floor with a handful of recliners where loved ones camp out. We found the last two recliners, that happened to be right next to each other, and slept for a few hours.

The next day was Friday, and the goal for Adam that day was lots of imaging, and a big conference for us with the doctor. By “the doctor” I mean one of the many cardiologists. At any given time there were two attending cardiologists, three or four fellows, a whole bunch of nurses, and a whole separate team of cardiac surgeons. One of the fellows mentioned they would be doing more echo today, that last night’s four-hour echocardiogram was “cursory.” I think that might have been a stretch (it only took a few more hours), but clearly they wanted to see every possible detail before making any decisions about surgery. Late that morning, we met with Dr. Dickerson. She was the attending assigned to Adam that day, and we liked her right away. She was jovial and very approachable, but inspired confidence after speaking with her even briefly. In fact, we were really impressed with all the staff there. With few exceptions, the nurses in the ICU were caring and competent. The doctors were accessible, had good bedside manner, and spoke to us in ways that we could understand. In our meeting with Dr. Dickerson, she brought two diagrams – one of a healthy heart, and one she had altered to show how Adam’s heart was different. She explained his diagnosis in greater detail, but there had not been enough imaging yet to decide on one surgery now, or two separate ones. A few key things she told us were 1. This was not our fault – nothing we had done during the pregnancy causes this, it just happens. 2. We would be in the hospital 1 ½ to 3 weeks, depending on which operation was performed and how quickly Adam recovered. 3. With the exception of yearly checkups, he would likely live a normal life, not burdened by his heart condition. 4. His surgery had only a 3% mortality rate, and any complications would likely be normal surgery complications like blood clots and infections. Those are scary, but nothing like the risks associated with kids who are missing parts of their heart, multiple holes, etc. His surgery would likely take place the following week on Tuesday or Wednesday, depending on the surgical conference. Surgical conference is a meeting that takes place early every Monday morning, and involves the surgeons, anesthesiologists, and cardiologists. Adam would be “presented” at the conference and a decision would be made as to his surgery date and which surgery would be performed. We left Dr. Dickerson feeling encouraged about his long-term prognosis, but still in disbelief that we were in this position.

We spent the rest of the day holding Adam as much as we could and trying to communicate with other family and friends. We were starting to receive calls, emails, and text messages from several folks. It was the beginning of one of the biggest blessings of this journey – the immense outpouring of love we felt from many, many people. Katherine’s parents extended their trip so they were able to take care of Ben and Katie. A neighborhood friend organized the parents of Benjamin’s kindergarten class to provide meals. She coordinated with parents from Katie’s school to bring meals nightly for the next three weeks. One of our friends from church organized a prayer distribution list. Many friends offered to take Ben and Katie on play dates. Other friends whose kids had endured extended hospital stays gave us helpful hints and empathy. So many people called simply to offer encouragement and help in any way we might need it. We were, and still are, blown away by the showering of love on our family.

Adam's room in the CVICU.

Here he is getting a little mommy time.

The chart showing what doctors are on duty. This must have been taken during the weekend, as usually there was a red team and blue team of docs.

 

Adam's Heart - Part 3

After delivering the big news, Dr. Morris and one of the fellows spent some time explaining what they saw during the echo, including some helpful freehand drawings they made of the heart. Adam had three issues which I’ll detail here. They are independent abnormalities and a name has not been given to them collectively, but according to his doctors, they do occur together as a group often. In the general population they are rare, but to the expert doctors and surgeons at Texas Children’s they are fairly routine.

1.       A bicuspid aortic valve. The aorta is the large artery leading out of the heart that delivers oxygenated blood to the rest of the body. There is a one way valve at the entrance to the aorta which, on most of us, has three “leaves” that make up the valve. Adam’s only has two. Despite this, it appeared to be functioning well. He may need additional surgery for this at a later date, but hopefully not until he is a teenager or adult, as the valve needs to be sized appropriately, and an implanted one would not grow with him. There is also a good chance this bicuspid valve will serve him just fine throughout his life.

2.       A ventricular septal defect (VSD). This is the classic “hole in the heart.” It will probably help to look at the diagram below. The ventricles are the chambers of the heart that pump blood out – the right ventricle goes to the lungs, the left ventricle goes to the rest of the body. These two chambers are separated by a wall of muscle called a septum. A VSD is a whole in the septum. This is a surprisingly common problem, occurring in .1-.4% of the population. A small hole is not a big deal and often closes over time.

3.       An aortic coarctation. This is a constriction of the aorta somewhere along the arch made by the aorta as it leaves the heart. Along this arch, arteries depart the aorta to serve the brain and arms, and fortunately his constriction was after these departures. The result was that his lower body, including the vital organs, were not getting sufficient blood flow, and this was magnified by the VSD. This was the imminent threat to Adam’s life and the reason he was showing symptoms of very heavy breathing and elevated heartrate. There is a small blood vessel called the Patent Ductus Arteriosis (PDA) that directs blood from the pulmonary artery to the aorta in fetuses. (They get oxygen from mom instead of from their own lungs.) This blood vessel closes in the first few days of life. While Adam’s was open, it bypassed his constriction, but as it closed, problems started to present themselves.

 

 

We are counting many blessing through this process. One of them was the fact that Adam’s PDA closed a bit later than some, and did so slowly. This allowed us a few days at home to enjoy those first precious days of life, and got breastfeeding off to a good start. The fact that it closed slowly meant he showed symptoms the way he did, rather than having organs start failing without much notice. In other babies with his conditions, they do not tolerate the surgery as well when their other organs have been compromised.

The cardiology fellow explained they would consider doing one surgery to repair both major defects, or do one surgery to repair the coarctation, then another in a couple months to repair the VSD. They would do much more imaging to determine how substantial the VSD was, and whether it was necessary to fix it right away. Adam was started on an IV and given a medicine called prostaglandins to keep his PDA open. Pretty soon, a bunch of folks showed up to help move Adam to the NICU. He was transported up there in his heated bassinet, and we got our first visit to a level 3 NICU, the rating for those capable of handling the most severe patients.

While we registered at the reception desk outside the NICU, we unexpectedly ran into an acquaintance from our church named Jeremy. He was there with his wife and one-month old son, doing routine cautionary care for a newborn with fever. We didn’t know Jeremy well at all. He is an elder, kind of a public figure in the congregation, but I think I’d only met him once. It was surely bizarre to see someone you know at 11pm at the NICU in a city of 4 million, but I couldn’t believe how comforting it was to have a familiar face with us. We spoke for a few minutes, sharing Adam’s diagnosis. I met with him again the next day – sharing my fears, praying for Adam and Katherine and me, and shedding some tears. As I mentioned earlier, we received so many blessings in this process. I really believe that Jeremy and his family were placed there by God intentionally. We had a six day old baby facing heart surgery, and we were overcome with fear, shock, and sadness. Having Jeremy beside us and sharing that moment was such a magnificent comfort and, I think, a reminder that an almighty God would be guiding us through the coming ordeal.

The NICU was not what we expected - dimly lit, quiet, carpeted, lots of fun colors. It was actually a pretty inviting place. We met some of the staff and answered the standard questionnaire again while the cardiologists continued with an extensive echocardiogram. Adam was an absolute champ through this whole process. He remained calm with the help of a paci, and a few drops of “baby crack.” That’s what the doctors call a simple solution of sugar water that can be dropped in his mouth. After a couple hours of echo, they recommended Adam be moved to the cardiovascular intensive care unit (CVICU). That is where he would be following his surgery, and they were concerned that he may need emergency surgery if the prostaglandins didn’t work to keep his PDA open. The CVICU is right next to the cardiac operating room. Pretty soon, a whole bunch of staff showed up to execute the move. They are clearly prepared for emergencies along the way – his transport bassinet had all kinds of devices for oxygen and other stuff. We all took the elevator to the 18th floor, Adam’s home for ten very important days.  

Adam's Heart - Part 2

This is Mark writing now. Sorry Adam, but I’m going to switch to writing about you in the third person. You’re going to get lots of things written to you in your baby book, including reflections on this amazing story.

 After a short time in the triage room, we were brought to an exam room. Adam was placed in a medical bassinet with a heater on top, and shortly after that, LOTS of stuff started happening. Many attempts were made to read his blood pressure – both arms, both legs – and very few were successful. His temperature was taken both under the arm in rectally. An earlier reading from triage showed a frighteningly low temperature that was likely an errant reading. His body temperature was fine at this point. While in the exam room, three different big machines rolled in. First was an X-ray machine – pretty quick and painless. Next was an EKG machine. This measures the heart’s electrical rhythm. It’s not painful, except for when they pull off the dozen or so adhesive pads from your chest. Next was an echocardiogram machine – back to that in a moment.

During these processes, many different people came to visit with us. I always imagined an ER visit would include one nurse and a doctor, but it seemed like five different nurses came in,  the different technicians for Xrays and EKG, and several cardiologists. Texas Children’s Hospital is a teaching hospital, and during this diagnostic phase of our visit the fellows were going to school on you. (For those of you unfamiliar with “Fellows,” as I was, they are doctors who have finished med school, residency, and are now in the final stage of learning their specialty before they become “attending cardiologists.”) From triage to the CVICU, I think we answered the standard questions about family history, recent history, and current symptoms about five or six times.

As everything was happening in the exam room, it was hard to keep Adam from fussing. We had been diligent about abstaining from pacifiers until breastfeeding was really well established. But as the need became clear, we happily gave in and he gobbled up the green Soothie that hospitals have. The pacifier would prove to be a good friend in the coming weeks. At one point, the cardiologists mentioned they were worried about infection. They would draw some blood and may perform a spinal tap. We were still thinking there was a good chance that these symptoms were just anomalies, and we would be sent home. The idea of a spinal tap, “just to be sure,” seemed really excessive, and Katherine was questioning her decision to visit the pediatrician originally. Emotions were starting to run high again.  Pretty soon, they wheeled in the echocardiogram machine, and two cardiology fellows got to work, explaining this would take about two hours. For those unfamiliar, echocardiogram is an ultrasound very similar to what they use during pregnancy. The wand is a little smaller, and they have amazing capabilities to measure all sorts of things as well as look at blood flow in different parts of the heart and body. After an hour or so, the attending cardiologist came in, talked to us for a bit, then spent some time working with the fellows on the echo. During the whole procedure, we were either next to Adam or seated nearby, but couldn’t understand any of what they were talking about.

 
Then came the news. The attending cardiologist, Dr. Morris, stepped away from the machine and told us pointedly, “He’s going to need heart surgery.”

To be continued...