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...

Adam's Heart - Part 1

Dear Adam,
Today you are three weeks old.  Yesterday we brought you home from the hospital after a two week stay for your heart surgery.  Your Daddy and I want to write down everything we can remember from this experience, as it is the beginning of your story.  And we want you to know it because you will clearly not remember it.  You have had so many people praying so fervently for you during the last two weeks, we want to share this story with them too.

I will continue your birth story shortly, but we were discharged from the hospital early after you were born - just over 24 hours!  The pediatrician detected a heart murmur, but thought it was just a normal duct (the PDA) closing.  She ran a couple of tests to ensure there weren't any apparent heart issues, and said she felt comfortable discharging us since we had plans to see our normal pediatrician (Dr Allison) a few days later.  At your follow-up appointment (this was on a Monday, when you were 3 days old), Dr Allison did not detect the murmur, so we thought the PDA had closed and that was the end of the story.  You were, however, getting a bit yellow, and your bilirubin test did have relatively high results (15.8).  Dr. Allison wasn't concerned and thought they would start to decrease.  He told us the level at which they start addressing bilirubin levels was 18-20.  I was a bit anxious, though, as the 15.8 seemed too close to the "limit" --- how would I know if it was continuing to go up?

I watched your color very closely over the next couple of days, and decided to go back to get your bilirubin level tested again on Wednesday (5 days old).  It was starting to decrease (12, I think?), so I was reassured.  I also mentioned to Dr. Allison that I thought you looked a little gray around your mouth sometimes, but he sort of just shrugged and didn't make much of it.

Thursday (6 days old), you slept quite nicely for the first time in your bassinet in the morning, so I enjoyed a few extra minutes in the shower and organized a few things in the bedroom while you slept.  The day was mostly uneventful, except for you seemed to be breathing rather heavily from time to time.  At one point, Grandpa asked if I was bouncing you, as your body was jostling --- but I was not, it was just from you breathing heavily.  I found out later that Grandpa and Daddy both witnessed this on Wednesday night, too, but didn't think much of it.  I decided to just keep watching you, as I was embarrassed to call the pediatrician again, since I'd just come in the day before for the extra bilirubin test. 

Daddy had gone back to work that morning (a morning/afternoon double rehearsal).  Benjamin was at the Mad Hatter Arts camp, so Grandma and Grandpa went to pick him up at 2 PM, and brought him back home before heading back out to pick up Katie from Saint Andrews to take her to her swim lesson.

After Grandma and Grandpa left, I let Benjamin play some Wii while you and I snuggled on the chair.  I also leafed through the "Baby Care" pamphlet that we were given at the hospital and read through the "call the doctor if..." section.  It stated heavy breathing (retraction), which you were doing now with some increased frequency --- I could see your belly rising and falling with your breaths.  It also said more than 60 breaths per minute.  I checked my watch and your breathing rate was about twice that rate.  Another warning sign stated "blue around the mouth" --- which I had been noticing from time to time over the past few days.  I got a little nervous, and decided to call a nurse to just check that Adam's signs were okay.  When I got the call back, the nurse told me that Adam's "symptoms" were probably normal, but I should come in and get him checked out just to be sure.

I wanted to see a different pediatrician, as Dr. Allison always seemed to think everything was fine, and I wanted a second opinion.  There were a couple of other pediatricians in the office that we liked, but none of them had availability.  The only available appointment was with Dr. Cook, a pediatrician we had never met.  I scheduled the appointment - the last available for the day at 3:40 PM.  But now here I was at home with you and Benjamin and no car.  I called my dad and asked if he could come home and pick me up while Grandma stayed with Katie for her swim lesson.  I then asked Benjamin if he would like to come with us to the doctor or go next door to play with his friend Jackson.  He opted to go next door, so I called our neighbor Tara and asked if Ben could come over for a couple of hours while we went to the doctor.  She agreed, so shortly after Grandpa got home, Ben ran next door excited to play with his friend.

Grandpa and I rushed out as it would be difficult to make our appointment on time.  I called Daddy on the way to tell him we were going to the doctor.  He was just finishing up his rehearsal at this time.  He suggested he go pick up Katie and Grandma from her swim lesson, but I wanted him to come to the appointment with me, so I asked him to meet us at the doctor's office instead.

Grandpa and I went up to the waiting room, where Daddy met us shortly.  Grandpa headed out to pick up Grandma and Katie while Daddy and I met with the doctor.  He listened to your heart and reported that he did hear the murmur.  But when he listened a second time, he did not hear it.  We talked about the grayish color around your mouth, which he thought was mostly normal --- but it did change back and forth --- and at one point he mentioned it was a little too gray for his comfort.  And at this point, you were doing your heavy, fast breathing with increased frequency.  Your heartrate was pretty fast too, somewhere around 175 bpm. He and his nurses also tried several times to take your blood pressure - it was difficult to take on such a little tyke!  I do not know really what the readings told him at the time.

Dr. Cook talked briefly about our options --- he was considering sending us to the ER, but it was now past 5 PM, and he wasn't sure whether we could see a cardiologist that night, so we might go home and wait to see a cardiologist the next day.  He called Texas Children's Hospital to speak with a cardiologist, and he came back recommending that we take Adam to the ER.  I think he and the cardiologist were having several discussions --- it seemed he was back and forth in the room a fair amount, but at this point the series of events becomes a little fuzzy.  He came back in the room and was trying to decide whether we needed to send an ambulance to pick us up, or if we could make the drive to the ER.  He decided we could drive to the ER, which was not far away.

It all seemed so unreal at this point.  We drove to the Children's Hospital ER and pulled up to the valet.  We checked in at the desk, and they had our information since Dr. Cook had called it in.  We were able to wait in a nearby area and not have to go to the general ER waiting area.  That's where I had my first good cry.  I just held you and began crying over the intensity of all this.  The kind woman sitting at the reception desk noticed and brought me a box of kleenex and said something reassuring along the lines that we were in the right place and they were going to help you.

We only had to wait a few minutes before we were escorted to Triage.  They took a number of your vital signs, and the two triage nurses were very upbeat and encouraging.  They told us about all the symptoms you were showing --- and that they could all individually be normal --- but since they were paired together, it was good to get checked out.  So at this point, we were still hopeful that there was indeed nothing wrong!

To be continued...

Adam's Birth Story - Part 1

Today (well, yesterday actually now that I actually am posting this) is Adam's due date!  I was scheduled to be induced tonight at 6 PM if I hadn't gone spontaneously into labor, and would still be on bed rest playing the waiting game.  How much has changed in one week!

Last Wednesday (July 10) I went to my 39 week doctor's appointment, having completed two weeks on complete bed rest.  It was my first time out of the house in a week.  Similar to the previous two weeks, we had a biophysical profile (ultrasound) done to check how the baby was doing due to my high blood pressure.  The ultrasound went well --- Adam was still growing on track and showed no signs of distress.  He had also moved to a head down position and seemed lined up well to be born!  We were excited to hear that, and relieved that everything with him continued to look normal.  At my 39 week appointment with Katie, the amniotic fluid levels were low, which caused me to go on bed rest for a few days with her before being induced.

We then went to wait in the exam room for my doctor, and I laid quietly on my side on the exam table, willing my blood pressure to be low.  I had been monitoring it at home, and it was often a fair bit higher at my appointments than it was at home.  The nurse came in and wanted to take my weight first, but I asked her to take my BP while it was at its lowest.  It measured high, of course, although I can't remember how high.  We then did the rest of the exam, and I laid back down and waited for Dr. Del.  He arrived and took my blood pressure, which I believe at this point was a bit lower, but still too high, and then proceeded with the examination to determine how far along I was.  He also tried to strip my membranes to help move things along (something that I would not have wanted in the past - but I preferred this procedure over being induced), but my cervix was not dilated enough for him to do so.

So we discussed the options at this point in the pregnancy.  I feel really fortunate to have Dr. Del as my doctor, as I believe he is just the right balance of cautious and calm for me.  He respects our desires to do things as naturally as possible, but I trust his judgement with weighing the risks of not intervening.  This proved crucial during the labor, as it was touch and go several times with Adam's tolerance of the contractions.  We agreed on an induction date the following week, which would buy me a few days closer to the due date.

We checked out with the nurse, with a final appointment with Dr. Del planned for Tuesday (July 16) for one last check-up before the scheduled induction (planned for his due date July 17, as that was the only opening they had in the time frame Dr Del requested at the hospital).

Following the appointment, we decided to be wild and went to Jamba Juice to get a smoothie. :)  I knew (or at least I thought I knew) that it would be my last time out of the house for another week.  Then we headed home where I continued on with my bed rest routine --- alternating between napping or reading on the bed, watching TV on the couch, or working on a hook rug reclined in the chair.

Thank goodness my parents were here to help with the rest!  My first week of bed rest, Mark had to juggle work, carting the kids to St Andrews, cooking, cleaning, taking care of the kids, etc.  With my parents' arrival, he finally got a bit of a break.  It was (and continues to be) wonderful to have their company and help while we waited for the baby to arrive, while at the hospital, and then again as we settle back into life at home.  It's going to be a bit of a shock when we have to resume care of three children after they leave next week.

Wednesday evening, my parents and Mark took the kids to a trial gymnastics class that we had scheduled while I rested at home.  Thursday looked to be pretty much the same as a typical bed rest day.  Mark had a double daytime rehearsal, so he took the kids to their activities (Ben is now at a 2-week long arts camp, while Katie continues at St Andrews) and then headed downtown for his rehearsal.  My parents stayed at home, and my dad made me a baked potato for lunch (one of the few low sodium foods I could eat --- as an aside - low sodium diets are difficult!) before he and my mom headed out to pick up the kids from their activities.  Katie had a swim lesson, so they were planning to take the kids for a sweet treat at Menchies before Katie's swim lesson.

I ate my baked potato in the recliner, and then decided to watch some (bad) TV on the couch.  I got up and headed to the bedroom to get a few pillows and had walked a few steps down the hallway when my water broke.  It was a dramatic gush - similar to what you see in the movies!  It completely soaked my pants, and I froze for a moment thinking "is that what I think it is" --- but it was so much all at once, that I knew it wasn't just a little incontinence.  I dripped down the hallway to the bathroom, changed my pants and put on a pad, wrapped my waist in a towel and then lay down on the bed to figure out what the heck to do!

I decided to reach Mark first.  I knew that he would likely be in the middle of a rehearsal (it was just before 2 PM), but we had agreed he would keep his phone on vibrate so that I could text him if anything happened.  So I sent him a text message, and then waited for a few minutes, and then tried calling him, but he didn't respond.  My parents then called to tell me that they had forgotten Katie's swimsuit, and were headed back home.  I told them my water broke, so we might have to adjust our afternoon plans. :)  I then called the doctor's office, and they instructed me to head to the hospital.

Mark had still not replied at this point, so I called his number one more time, and then decided to try to reach someone else in the symphony to get a hold of him.  I tried our friend Steve's cell phone number, since he works at the Symphony and would be able to reach Mark, but he did not answer.  I did not have the personnel manager's phone number, but I remembered that another friend in the Symphony was not playing in the afternoon rehearsal, so I called her.  She was very excited for us, and offered to call the personnel manager to get a hold of Mark.  She sent me a text message confirming that she had reached the personnel manager, and he was on his way to the stage to tell Mark.  A few minutes later, I got a very excited phone call from Mark telling me that he was on his way home!  It ends up that they had just started a break in the rehearsal when the personnel manager came on stage to get Mark, and he was done with the day's rehearsal anyways.  However, he was certainly not going to be at the rehearsal the following day or the weekend's concerts, so he had a brief discussion regarding getting a sub to cover his parts.

My parents arrived back home with the kids and they came to the bedroom where I told them it was time to go have the baby.  Katie was very wide eyed and curious about the whole thing, but Ben was eager to express his desire to NOT go to Katie's swim lesson and instead stay home to play his Batman Wii game. :)  My parents had told them in the car on the way home that it was time to have the baby, and apparently he showed a little more interest at that point. 

I got out our hospital packing list, and my mom helped me put the final items we needed in our suitcase while Katie chatted at us and wanted to take everything back out of the suitcase.  We ended up sending her to play with Grandpa in the living room.  Mark arrived back home and finished packing the suitcase.  We then took one final photo and loaded up the car to head to the hospital.  It was time!

At this point, it was about 3:30 PM.  I still was not having any real contractions.  We got the hospital and went to the waiting room to be seen by a triage nurse.  Apparently the hospital was VERY busy that afternoon, as I heard a woman complaining that she had been waiting with her friend to see the triage nurse for hours as she had not felt the baby move in a while.  Of course I immediately worried about how our baby was faring, but fortunately Adam was giving little kicks here and there to let me know he was okay.  So we sat in the waiting room and sent a few text messages to friends and family and continued to post on facebook. :)  I think it was about 4:30 PM when I was called into the triage area to begin filling out paperwork --- it still surprises me how much paperwork you have to do at the hospital despite the lengthy forms you fill out in the pre-registration process. 

I was asked to give a urine sample and then change into a gown for an examination.  While I was changing into the gown, another gush of fluid flowed out on the floor next to the table.  When the nurse came into the room, I warned her about it, and she said she would not need to perform the test to see whether my bag of water had truly broken. :)  She then attempted to perform an examination to see how far dilated I was.  Apparently my cervix was still very high, as she was having trouble figuring it out and it was QUITE uncomfortable.  She then brought in another nurse to try to verify (really?!), and they determined I was about 2 cm dilated.  

We were informed that my doctor was not on call that night, so his back-up (who I had never met) would be our doctor for the evening.  I was heartbroken, as I had assumed that Dr Del was covering the week day nights --- I knew he alternated weekends off, but I assumed he would be there for the birth.

We were then assigned a room, so I put on a bathrobe and we walked over to the labor and delivery area.  We were assigned to the same type of room that Katie was born in.  The labor and delivery area is organized into "pods" and there are three rooms in each pod.  3/4 are identical, with the remaining room a fair amount smaller than the others.  We were assigned the smaller room, but I was actually sort of pleased for the familiarity/nostalgia of being in a similar room to that where Katie was born.

It was now around 6:30 PM.  Our first nurse came in and told us to get settled as she begin setting up all the monitors, etc.  Mark got out the exercise ball and blew it up, and got out the laptop where we would use to play relaxing music.  Shortly thereafter, I began to get hooked up to various things --- first the IV fluids, then the fetal monitor and contraction monitor, and finally a blood pressure cuff.

The anaesthesiologist arrived to talk about pain management (epidurals, etc) - and was really relaxed and talked a lot about how the various procedures worked.  I told him that we may want an epidural, but wanted to wait to see if I really needed one, and warned him about the failed epidural during Katie's birth.  He was very reassuring talking about how they worked, etc.  The hospital we were at was a teaching hospital, so I asked him about his tenure --- I did NOT want to be a resident's first epidural!  Fortunately, he was in his fourth year rotation, and would be an attending physician the following year.  After he left, the nurse assured us that he was quite good, and so we decided that if I needed an epidural, we would allow him to do it versus requesting the attending physician.

The nurse then told us that they would be starting the pitocin shortly.  I asked if we could wait, I was beginning to have some contractions, and wanted to delay true labor a bit anyways, in the hope that if I wasn't ready to deliver until the morning that Dr. Del would deliver the baby.  She told us the doctor's orders were to start the pitocin soon, as the risk of infection increases with the amount of time that the water is broken.  I was disappointed, as I wasn't sure whether this was Dr. Del's orders or that of his back-up. 

Fortunately, the staff was quite busy, so they didn't come in to start the pitocin until about 8:30 PM.  We also had several nurses come and go, informing us that they would be our nurse, and we liked some better than others, so didn't really mind a few of the changes. :)  I asked again about delaying the pitocin to another nurse, and she said she would check the doctor's orders, as often Dr Del was fine with taking things slowly.  She came back and confirmed, however, that he wanted to get started.  Again, I wondered if they were Dr. Del's orders or his back-up.  I enquired about having juice, somewhat as a test, as he allowed me to drink juice during Katie's induction --- and found out I was only allowed ice chips.  I was really disappointed at this point, as I figured I was operating under the orders of a doctor I had never met.

Somewhere in these shift changes, though, a new nurse Ann was assigned to us, who would be with us throughout the rest of the labor and delivery, and she said something about talking to Dr. Del.  I was really surprised and told her that I thought he wasn't on call.  Apparently he had several women delivering that evening at the hospital, so he was going to come to the hospital!  I was so relieved and grateful that we would be getting him after all!  She told me he asked how I was handling the pitocin, and in the way she stated this, I knew that he knew/remembered that I was not keen on all the interventions.   She told me that they would be turning it up very slowly, etc.  I was just so relieved to be having our actual doctor for the evening!

More to come...

The Waiting Game

I am writing this post at 37.5 weeks gestation --- yay!  We made it to full term!

Our babies don't tend to come early --- Benjamin was born on his due date, and Katie was induced three days before her due date (with no indication she was trying to make her way out anytime soon) --- but we've had several friends who have had early births recently, and I am a bit older (35) this time around, so it was always in the back of my mind.  I was quite excited to reach the 37 week mark.

Another reason I was glad to make it 37 weeks, is that at my 35 week appointment, I had high blood pressure - for the first time in my life, ever.  It took about an hour in the doctor's office and four readings for it to go back down to an appropriate level.  The doctor mentioned the possibility of needing to deliver early if it became an issue, so that obviously elevated my concern as well.  But at the 35-week appointment, we agreed that I would take measures to slow down and I would come in the following week to see how things were going.  I began mostly working from home following that appointment and cut down drastically on salt (something I have never paid attention to before), and got a normal BP reading at my 36 week appointment --- as well as lost 5 pounds in water weight and re-discovered my ankles!  I then began working exclusively from home.

At my 37 week appointment, we had a biophysical profile ultrasound --- something I was worried about, because I was afraid they would find *something* that would warrant an early delivery.  When I was 39 weeks pregnant with Katie, they did an ultrasound to check her positioning (because she had been sideways), and while she had turned head down, I had low amniotic fluid levels, which led to the necessity of being induced.  Fortunately, everything looked perfect during this ultrasound!  But my blood pressure was high again (it only took lying on my side for one additional reading to get it back down), so my doctor prescribed *mostly* bedrest, and I began disability leave from work.

So now I am just a couple of days away from my 38 week appointment, and they will complete another ultrasound as well.  While it has been nice to be done working (although I actually did some additional work on my laptop from the easy chair Thursday & Friday last week --- it has been nice to tie up all the loose ends in a relaxed manner), I admit it is hard to actually rest when I think of all the things I could be doing with this free time!  And I am a bit of a worrier, so every headache, etc. makes me think I'm getting pre-eclampsia.

Mark has been WONDERFUL in continuing to work (although this past week, fortunately, he has had a light schedule), doing all of the household tasks, and wrangling the kids so that I can actually rest.  I'm getting quite skilled at playing Wii with Benjamin, although I still don't get the point of his Batman Lego Wii game, which he is rather obsessed with.  And I'm enjoying playing games, stickers, coloring with Katie, etc.  But I think we are both ready for my parents to arrive (tomorrow!) to help entertain the kids and give Mark some relief from all the household chores!  He has a busy week coming up at work, so it would be very difficult for me to continue the bedrest while he is gone --- especially since both kids are home for the week from school.

Once my parents arrive, I'd love to just naturally go into labor and have this baby --- but I'm also prepared to wait it out another few weeks, assuming my blood pressure stays at reasonable levels.  Fortunately they can stay for a few weeks, and assuming that I have an uncomplicated delivery, I'm much less daunted by the idea of taking care of two kids and a newborn than I am trying to be on bedrest with the two we already have.

We are getting rather eager to meet this baby!  We bought a few new things (gender neutral) for the baby, and got out the bassinet this week.  The hospital suitcase is out (although not packed), so we're beginning to make some progress.  A boy and girl name have been picked.  And we're rather eager to find out if this little one is going to be a boy or girl!  For most of the pregnancy, we were very convinced that this was another boy --- but now we're beginning to have doubts!  I'm carrying this one more like Katie at this point (he/she is sideways, but still moving around, so not concerned yet about positioning), and a lot of people are telling me they think it's a girl.  So we'll see! 

Either way, come on out and join us whenever you are ready, baby --- we're ready to meet you!