Adam's Heart - Part 9

The 15^th floor of Texas Children’s Hospital is the non-ICU cardiac floor. Almost all the patients there have had surgery, done significant recovery in the CVICU, and this will be their final stop before being sent home. The tenor there was so different from the CVICU – spacious, far less nursing care, and really quiet. Everyone has a private room, and parents, rather than nurses, are the primary caretakers of the patients. In the ICU, parents were encouraged to be there as much as they liked or could, but most would leave for portions of the day – meals, taking care of other kids, and of course sleeping. In the ICU, there was constant noise from the staff chatting, alarms going off, equipment moving around, all kinds of noise. There were some private rooms in the ICU, but we were in a large room that accommodated several babies – it was hard to find a comfortable chair and breastfeeding was a big deal. All that changed when we got to our room on 15. We had a fold out bed right next to Adam’s crib. The quiet was amazing – pleasant, but lonely at times. It had been fun to chat with other parents, see how their babies were doing, and make small talk with the nurses. The only interaction with other patients or parents was limited to rare meetings  while coming or going. We also had to adjust to taking care of our own baby. We had gotten used to the nurses doubling as babysitters while Katherine and I ate meals together, spent time with Ben and Katie, and especially when sleeping at night. Overall, it was much closer to regular life with a newborn baby.

One of the main reasons patients spend time on this floor is so that parents can get some training in how to care for them. Post-surgery babies need to be handled a little differently to protect their sternums. We had to get lessons in bathing, dressing, CPR, and car seat use. It turns out the car seat and CPR stuff doesn’t change much – they just really want parents to be educated in those regards. It was really great to be able to hold Adam and nurse him whenever we wanted. At this point, he had only a pulse oximeter attached to him, and even that was removed pretty soon after we moved to the 15^th floor. The nurse would come in to check his vitals every four hours – a long way from the constant monitoring and alarms of the CVICU.

 

We met each day with the cardiologist for the floor – Dr. Reddy. He was an Indian gentleman who sounded exactly like Rahaj from the Simpsons. He was a very encouraging, kind hearted doctor. Usually he and a fellow would make their rounds in the morning, and we’d talk for a little while each day about Adam. His recovery was basically complete and they just wanted to keep an eye on him for a few more days before sending us home. Dr. Reddy said one thing in particular that we really appreciated. We were concerned about going home and not having the supervision of the doctors. What would be some warning signs that there were problems? What symptoms should we look for? At what point does normal baby fussiness evolve into an area of concern? Our concern, especially Katherine’s, was due largely to the subtle but concerning symptom that brought us to the ER in the first place – the rapid, labored breathing. Katherine had been widely praised for her correct mother’s intuition but at this point felt the burden of “what if I miss it the next time?” Dr. Reddy said confidently there really should be no symptoms or problems like that. Speaking to Katherine, he said “You focus on being a mother, we will take care of his heart.” That was immensely reassuring as our departure from Texas Children’s drew nearer.

We spent a total of four days on the 15^th floor. They let us know on Wednesday that Adam would be discharged the next day. We still had to take our car seat class, and there was a myriad of documentation to be done before we could leave. The day seemed to go by slowly. We had a meeting with Amy Hemingway, the surgical nurse practitioner and one of our very favorite people that we had worked with. She was our liaison to the operating room during Adam’s surgery, and was the one who educated us about how to care for him during his recovery, both in the hospital and at home. She walked the line perfectly between being a realist about risks, dangers, and cautions, but also encouraging about excellent surgical results, and living at home with school age kids and a post-op baby. She was one of those medical professionals who, after speaking with her, you didn’t have to do any interpretation of what was said, because she had explained things so clearly and realistically. She told us Adam would be fully recovered six weeks from the date of his surgery. His heart was fine, but it would take that much time for his sternum to heal. In addition, his immune system would be a little weak – a byproduct of the heart-lung bypass machine. We would need to limit his exposure to crowded places and other kids. Realistically that meant not taking him to the grocery store or church and not having Ben and Katie’s friends and neighbors over to play – definitely a tough pill for the older kids to swallow.

And so on Thursday, August 1^st, at about 5pm, we left Texas Children’s to bring Adam home for the second time. He hated the car ride, crying for most of the long drive home. It was really pretty amazing to be home – no nurses or doctors, no monitoring equipment, no way to check his blood pressure. When we first left the CVICU, we thought about this time arriving home and it made us uneasy. But it turns out the process worked, and we felt vigilant but mostly relaxed. One of the biggest challenges during this whole experience was being away from Katie and Benjamin. We missed them a lot, and it was tough for them to have Mom and Dad gone most of the time, spending their nights at the hospital. Katie was vocal about missing us. Ben was less vocal, but had some behavior issues at school a little while later that we think are a result of this. It felt so good to be at home with those two sweet kids again. It was just fantastic to be together as a family, to do normal family type things like tucking kids in bed at night, reading together, and eating meals together. We really appreciated the simplest things.

Adam's Heart - Part 8

Thanks so much for reading our blog! It’s rewarding for us to share all these details with our friends and family, it helps us remember the details enough to write them down, and hopefully Adam will appreciate knowing his story someday.  

The day after surgery was the start of Adam’s journey, God willing, toward being a normal baby. While that first day seemed long and without progress, it really was an amazingly brief journey considering the complexity and significance of his surgery. The doctors and nurses were well versed in how this process goes, and we were continually encouraged by their calm nature and lack of worry. The first day, they just wanted Adam to rest, keep his pain under control, and maintain stability with his vitals, especially blood pressure. He was getting hefty doses of Fentanyl, a strong pain killer, that pretty much kept him asleep. He opened his eyes a few times that first day, but that was it. We weren’t able to hold him anymore. There was so much he was connected to, and some of it was delicate – namely the arterial and aortic lines. We tried to spend time next to him, chatting with each other or the nurses, hoping maybe he could hear our voices and find them comforting.  

Now that we’re up during the night feeding Adam or walking laps around the house to get him to sleep, we look back fondly on those nights In the Ronald McDonald House. It was really kind of nice to have nurses looking after him so we could get a full night’s sleep. Mostly full night sleep – Katherine was still getting up every three hours to pump breast milk. I was getting up early to be back with him in time for the 6:30am rounds of the surgery team. The surgeons are the “big dogs” in the CVICU, and we really wanted to hear what they had to say about how he was doing. Over the first five days or so, he was generally doing well, but his blood pressure was often a concern. They tried several different medications, and each of them responded for a time, but then something different would be required, presumably because his condition was changing rapidly. At one point, I found it humorous that he responded real well to Inderal, the drug used by many performers, including lots of orchestra musicians, for stage anxiety.  

Day two was exciting because he started getting disconnected from a little more equipment. First were the chest tubes which drained fluid from his chest cavity. We had one night nurse in particular, for three nights in a row, who was very proactive about removing the equipment. There was a different dynamic at night – the daytime staff was  more cautious, always checking with layers of superiors before wanting to do anything. At night, the nurse would feel it was safe to remove tube such-and-such or step down the ventilator, would check with the attending cardiologist, and then just do it. It was fun to come in the mornings and see what progress had been made. Slowly, it all came off, and the pain medicines were reduced.

 

We had been warned that the recovery from surgery didn’t often go completely smoothly. Most babies have some hiccups along the way. Adam’s came on the second night after his surgery. When I came for the morning rounds early on Wednesday morning, the nurse told me he had had some “seizure activity” during the night – a rhythmic firing of his leg muscles that was definitely not normal baby twitching. It was concerning because it looked like seizures. But it didn’t have some of the hallmarks of typical seizures – a spike in heart rate and blood pressure. He had seemed otherwise calm through these two or three episodes lasting several seconds each. The doctor ordered an EEG – a procedure where they place electrodes all over the head and measure electrical activity in the brain. The procedure took place later that day. That afternoon, I went home to spend some time with Katie and Ben, then stopped at the grocery store to get some fruit and snacks for us at the hospital. While I was there, I got a text message from Katherine saying to please come back immediately – the neurology doctors wanted to consult with us about Adam possibly having epilepsy! Wow, that made for a very fast, stressful drive back to the med center. Neither Katherine or I knew much about epilepsy, including that it has a spectrum of severity. We imagined a child prone to grand mal seizures. Would he be able to drive? Play sports? This was the first time since getting his original diagnosis that there was a real fear of Adam having a long term, life-altering limitation, and it was very scary.  I got there quickly, but it turned out the neuroligists were not in a hurry to meet with us, and things were probably not as dire as we had imagined. The cardiology docs told us they had found “an area of focus.” It could be something, it could be nothing, but it was not uncommon. We met with neurology the next day, and they reiterated the information the cardiologists had told us. An area of focus is a spot of unorganized electrical activity in the brain. It can be a seizure, but it can also just be random. They said if they were to give everyone in the room an EEG, probably many of them would have these areas of focus. They weren’t overly concerned, but they did want to do a brain MRI. In the week that followed, there would be some hospital drama surrounding this MRI. The neurologists wanted to have it done, and the cardiologists did not. Initially, we were told that Adam’s surgeon, Dr, Fraser, was strongly opposed to it. Adam’s blood pressure was still high, and he was still in a pretty fragile post-operative state. Regardless of what the MRI told them, no immediate action would be taken anyway. As Dr. Fraser is one of the bigwigs at the hospital, his opinion prevailed. And as the days progressed without any other neurological concerns, the neurology folks acquiesced, and we were told to schedule a consultation two to three months after we were discharged. Whew. 

From there, the pace of recovery really picked up. On day three, the dialysis tube came out. Day four, the brain oxygen patch, urine catheter, and aortic line.  I think day four also saw the removal of the ventilator. This was significant in that if there was a problem and he had to be reintubated, that would be a quick and unpleasant procedure. The nurses (especially at night), had been proactive in stepping down the frequency and pressure of the ventilator. The idea is that by the time it gets shut off, the patient is doing almost all the breathing on their own. Adam’s breathing tube was removed uneventfully. He was given a nasal cannula for some extra oxygen, but that was removed a day later. 

Day five was awesome, as this was the day the arterial line was removed and we were able to hold Adam again. As I look back through the pictures we took, the one below is my favorite – Katherine holding him for the first time since his surgery. He got a lot of cuddling time that day. Day six saw plans to remove his feeding tube. Like the ventilator, there were some steps along the way. First, they delivered  a small amount of breast milk into his belly via the feeding tube. The next feeding, a little more was added, and this continued throughout the morning. He responded well, and that afternoon he got his first bottle of breast milk. Amazingly, we never had to give him any formula through his entire hospital stay! Just breast milk and IV nutrition. That night, the cardiologist gave the okay to try some breastfeeding. Katherine was extremely excited, and extremely anxious. We are big believers in the importance of breast milk for a growing baby, and that bond between mother and baby is a BIG deal. He did have six days of breastfeeding experience, and had developed good skills before he was admitted to the hospital. But would he remember how? All the medical staff was real confident but Katherine was nervous. 

 

 

 

The staff insisted that all these curtains and barriers be set up around this “scene.” Apparently it’s a privacy law or something. We didn’t really understand – you’re allowed to breastfeed anywhere in public, but apparently not in a hospital. Regardless, we were excited to give it a shot. I helped get Adam and his remaining tubes in place, and sure enough, he latched right on. Katherine was tremendously excited and relieved. From that point, Katherine would head up to the CVICU during the night rather than the hospital’s milk bank where she had been pumping. The nurse would just call our Ronald McDonald room when he started to get fussy from hunger, and she’d head up. The next day, the feeding tube was removed, and all that was left was some standard monitoring equipment (blood pressure, pulse oxymeter, etc) and his PICC line. 

 

Over the weekend, the doctors told us they were expecting to send Adam down to the cardiac floor of the hospital on Monday. The weekend went by slowly, but eventually Monday came and we took the next big step toward having a “normal” baby – out of the CVICU.

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.