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Jul

PART FOUR: The Amazing Story of Madeline Alice’s Birth

By Mike 4 Comments

Categories: The Battle of the NICU

In PART THREE Maddie was transferred to to UCLA because her birth hospital didn’t have the capabilities to care for her. With Heather not yet released from the birth hospital, I travelled to UCLA to be with Maddie as she fought to survive her first night on earth.

Once my parents left I went back into the NICU to check on Madeline. She was still connected to the high powered ventilator, but now was not moving her hands and legs as she had been previously. Maddie’s nurse, Nancy, told me that she had been given medication to temporarily paralyze her so that her body would do nothing but focus on breathing. She was also being given dopamine to keep her blood pressure up, fentanyl to minimize any pain she may be feeling, and the nitrix. I then asked if there were any ways that I could keep track of how Madeline was doing. Dr. Walker offered the “proximity test.” Doing this test is simple…you just look at Maddie’s isolette. If a lot of people are milling about, (as they had been pretty much all day), that was bad. On the other hand, if there were only one or two nurses standing casually nearby, things were probably stable. Nancy’s suggestion was for me to follow a blue number on Madeline’s monitor that kept track of the level of oxygen in her body. Ideally, this number should be between 85-95. Maddie’s number right then was in the low seventies, but this was okay for now I was told.

I called Heather again to give her yet another update, then returned to the waiting room. I was, as you can imagine, very worried at this point, and having to go through this without Heather was very hard. I couldn’t even imagine what it was like for Heather to be so far away from Maddie as all of this was happening.

Every few minutes I got up and went down to the NICU to check Maddie’s blue number. It was always different, once 88, another time 67. I began to check the number fairly obsessively as it was the only thing I felt I had any control of. One time, as I was checking the blue number, I noticed a large board on the wall that had a listing of all the NICU babies and some data about them. Something immediately leapt out at me. Under a column entitled “Acuity,” every baby was marked as being 1:2 except for Madeline who was marked 2:1. When I inquired about this I was told that acuity meant how many nurses were assigned to each baby based on their needs. Therefore, 1:2 meant that a baby was in good shape and able to share a single nurse with another baby. Maddie’s 2:1 meant that she had two nurses dedicated to her alone. Even with my horrid math skills I knew that that meant that Maddie was requiring four times the care of all the other babies.

I was very tired at this point, and when my father returned from dropping my Mom at the hotel we went down to the first floor to get sodas from the vending machine. We then sat at a table and talked for a while as we drank them. I don’t remember what we discussed, but it had to do with Maddie and the whole situation, and it was good to talk things through for a little while.

It was 2:30 in the morning when we went back up to the NICU where Madeline seemed relatively stable as her blue number was in the low eighties and her isolette was only surrounded by her two nurses. I mentioned to Nancy that I felt bad Heather was not able to see Madeline, so Nancy suggested we take a couple pictures of her with a Polaroid camera they kept in the NICU.
With my developing Polaroids in hand I decided to go home to get some sleep. I told Nancy to call me immediately if anything happened with Maddie, and that I would call at 6:30 in the morning to get an update before the nurses changed shifts.

Upon walking through my front door Rigby leapt off the couch and barked like mad until she realized it was me, then spun around in anticipation of the treat I always give her when I come home. As I gave Rigby her treat, Leah, who had been sleeping on the couch, woke, and I updated her about Maddie and showed her the Polaroids. I then retired to my room where I set out clean clothes in case the NICU called and I needed to get back to there immediately.

It took a little while to get to sleep with all of the thoughts in my head, but I eventually did, and before I knew it the alarm went off signaling it was 6:30 in the morning. My first thought was that the NICU had not called during the night, and that Maddie was hanging in there. I quickly called the NICU and was told by Nancy that Maddie was still relatively stable. I called Heather with this news, then got dressed, took Rigby out to the bathroom, and headed over to Heather’s hospital.

Heather seemed to be in relatively good spirits considering everything once I got there. I showed her and her mother, Linda, the Polaroids of Maddie, looked through a book about a preemie born under two pounds who was now a healthy four year old, and received a hat and booties for Maddie from a nice retired woman who donated her time at the hospital. Before too long, however, I decided to go and check on Maddie.

Maddie was still relatively stable when I returned to UCLA, and remained that way for the next few hours as my parents and I went back and forth from the waiting room to her side. Around two in the afternoon the stress and lack of sleep was really catching up to me though, so I decided to go home for a little nap. My parents thought this was a good idea, and headed off to check into a new hotel as the one they were at didn’t have any rooms that night. I told the day nurse to call me if there was any change in Maddie’s condition.

Once back at home I placed the phone on the bed stand and climbed under the covers. I had only been asleep for about twenty minutes when the phone rang. I woke up and checked the caller ID. It read: “UCLA NICU.” I felt sick as I answered it and heard Dr. Walker’s voice. She told me that Maddie was de-stating (her numbers were falling), and that I needed to get to the hospital as soon as possible. There was gravity in her voice that I had not heard the night before when I first met her. I told her I would be there right away and leapt out of bed.

In PART FIVE the doctors tell us that Maddie most likely would die that day.

Jul

PART THREE: The Amazing Story of Madeline Alice’s Birth!

By Mike 5 Comments

Categories: The Battle of the NICU

In PART TWO Madeline faced very serious life threatening health issues, and was transfered to a larger NICU at UCLA in an attempt to save her life…

We had been told that it would take about forty-five minutes for Maddie to be transferred and admitted to UCLA’s NICU, so my parents and I made a quick stop at my place in order for me to take a “military” shower (basically a ninety second shower), and change into fresh clothes. While I was doing that my parents took Rigby out to the bathroom. We then were off once again leaving Rigby very confused at her second two minute visit of the day. Luckily for her Leah had agreed to spend the night at our place with the pup because I didn’t know how long I would be at the hospital and Rigby – the spoiled princess that she is – had never spent a night alone in her life.

En route to UCLA all I could think about was how the transport team had to hand pump Maddie’s lungs, and how literally her life was in their hands. The doctor at the hospital where she was born had told me not to worry, as there were four men on the transport team who would take turns pumping, but this comforted me little. What if their hands got tired? And how long could they keep pumping Maddie’s lungs at the proper, life sustaining rate? I looked out the window at the stretch of road that we, like Maddie ‘s ambulance a few minutes earlier, were travelling on, and realized how lucky we were that this was happening Sunday at nine p.m. During the week this road was more often than not clogged with a sea of idling cars, and the parallel streets to the North and South, were no better. How would they have gotten Maddie to the Nitrous Oxide she so desperately needed if this was happening at that time of day? And how long would they have been able to keep pumping her lungs if they got stuck in one of those traffic jams? Could they have sent over the UCLA helicopter? If so, how long would that take? After all, every minute counts.

Soon we pulled into UCLA and I set out running toward the hospital as my parents parked the car. I didn’t have a clue how to get to the NICU though, and at first it felt like one of those bad dreams where you’re trying to get somewhere, but whenever you think you’re finally there you open a door and find another giant corridor ahead of you. Eventually I found my way inside and took the elevator up to the second floor where the NICU was.

Upon entering the NICU I was relieved to see Madeline lying in a basinet. Sure, she was once again surrounded by a team of nurses and doctors, and yes, her little chest was once again vibrating violently thanks to an even more high powered ventilator, but she had survived the ambulance ride over. I watched as nurses and doctors swarmed around her, then noticed a large machine to her right that administered the Nitrous Oxide.

Before too long the doctor in charge, Dr. Walker, introduced herself. She was a young woman, no older than me, and as I looked around the NICU I saw that just about everyone else there was young. This may be how you want your hospitals to look when you’re watching Grey’s Anatomy or E.R., but when your baby’s life is at stake you want Meryl Streep or Morgan Freeman in charge, not Katherine Heigl regardless of how cute she may be. UCLA, I was to find out, is a training hospital, and most of the doctors there are fellows (basically the last step before you become a full fledged doctor). I tried not to worry about all of this as my parents arrived and Dr. Walker suggested we move to a waiting room to discuss Maddie.

The “waiting room” Dr. Walker led us to was certifiably Kafkaesque — it was no more than ten by ten feet and without windows. Well, no real windows anyway. A painter (obviously, like the doctors, still in training) had painted a couple of poorly rendered windows on the walls, but they did little to relieve the feeling of claustrophobia the room elicited. Making the room even less pleasant was the fact that it was connected to a tiny bathroom, and whenever anyone used it you could hear absolutely everything going on inside it. There were also no magazines on the magazine rack. I didn’t notice any of this initially, however, as I was only interested in what the doctor had to say about Maddie.

Dr. Walker spoke in a calm and easy to understand manner, and before long had assuaged my worries about her age. What she had to say, unfortunately, was not very encouraging. She told us that Maddie was a very sick baby, and had three major issues to deal with. First, Maddie’s lungs, as Heather and I had feared, were underdeveloped. Second, there seemed to be a serious problem with Maddie’s heart, and a cardiologist, as we spoke, was giving Maddie an echocardiogram test (“echo” for short) to figure out what it was. Lastly, Maddie was premature, and would have to overcome all of the serious problems associated with being born early. Dr. Walker wanted us to understand that while they would be giving Maddie the best care possible, we needed to understand that it is a long road to health even for premature babies who didn’t have lung or heart issues as Maddie did.

I called Heather and related all that Dr. Walker had told me, then, about a half-hour later, was summoned back to the NICU to speak with the cardiologist fellow regarding the results of Maddie’s echo test. He too appeared to be very young, and explained that, while it was hard to get a good echo reading because the ventilator made Maddie’s chest move so much, he believed he knew what the problem was with Maddie’s heart. To put it in the simplest terms, a baby is supposed to start pumping blood through a ventricle in his or her heart upon being born. Maddie, unfortunately, could not do this because her ventricle was blocked. The cardiologist had a couple ideas on how to deal with the problem. Ideally, he said, a procedure could be performed where the ventricle would be un-blocked using a stint, similar to angioplasty. The cardiologist’s fear, however, was that once the ventricle was unblocked the chamber that is supposed to pump the blood through the ventricle may be too small to do the job. In that case surgery would be necessary to enlarge it. While I was trying to wrap my head around the idea of my little baby having open heart surgery, the cardiologist added that this would only be possible if Maddie gained enough weight and got strong enough to undergo surgery in one month. If it took Maddie longer than a month to become surgery ready the medication that would keep her heart going until then would start to have serious side effects, not least of which was brain damage.

I called Heather to tell her what the cardiologist said, then went to the waiting room to relate the same information to my parents. Soon Madeline’s nurse for the night, Nancy, dropped by to speak with us. Nancy had a kind, nurturing presence, and explained that there were two nurse shifts a day – one from seven a.m. to seven p.m., and another from seven p.m. to seven a.m. I could visit Madeline whenever I liked, she told me, except for between seven and eight in the morning and seven and eight at night when the nurses changed shifts. She also told me not to feel the need to remember anyone’s name as I would be meeting lots of people, and that I should never be afraid to ask any questions.

It was soon past midnight and my father and I decided that my mother, who was a recent stroke survivor, should be taken back to their hotel room so that she could get some sleep. It had been a long day with a lot of stress, and we didn’t want to press her any further. My father told me he would come back after he dropped her off, however.

To be continued in PART FOUR when Maddie struggles to survive her first night in the NICU.

Jul

PART TWO: The Amazing Story of Madeline Alices’ Birth!

By Mike 7 Comments

Categories: The Battle of the NICU

In PART ONE Heather gave birth to Madeline eleven weeks and a day premature. Things, despite our fears, seemed to be going well as Maddie was taken to the NICU…

Once I left Maddie behind in the NICU I looked into the waiting room and saw Maddie’s entourage – my parents, Heather’s parents, Heather’s aunts and uncles, Heather’s brother Kyle, her cousin Leah, even some of Heather and my friends. I smiled and strolled through the swinging door.

“She’s doing well!” I announced. “Three pounds one ounce!”

Dr. Mike Not one person so much as looked at me. I stared at them in shock as they continued to chat away like I was invisible. After a second I cleared me throat and repeated, “She’s, uh, doing well…” Only then did someone say, “Oh, Mike!” It turns out that because I was clad in my face mask and scrubs, everyone assumed I was a doctor…a fact which pleased my mother to no end. Before too long everyone had surrounded me and was offering congratulations. The camera with Maddie’s first photos was passed around for all to see before Kyle took it and snapped a photo of me doing my best doctor pose (yes, my mom ordered a copy of it of Snapfish).

After a few minutes I went back to check on Heather who was still being worked on by the doctors. Before too long she was wheeled into recovery and a curtain was pulled around us for privacy. I showed Heather the photos of Maddie before telling her who was in the waiting room, and she seemed in good spirits. I then brought her parents, Kirk and Linda, back to see her and they celebrated Maddie’s arrival together.

Soon the nurse told us that we could move our things from Heather’s old room into her new one in post partum, so I went off to transfer our stuff. Luckily for me Leah and Kyle offered to do the job instead, so, after greeting Heather’s old friends and neighbors, Tara, Erin, and their Mom, Sheila, and after making a call to a couple of my friends with the news, I went back to be with Heather.

By this time the clock was ticking closer to six-thirty every minute, and, as Heather was given ice chips and medication to deal with the pain of her C-section, I could hardly contain my excitement about going back to see Maddie. Finally, it was time, so I left Heather and practically skipped down to the hall to the NICU.

Upon pushing through the doors of the NICU my heart sank. The basinet I last saw Maddie in was now surrounded by a host of doctors and nurses, and Maddie’s color, which had been a healthy pink, was now grey. Most disturbingly, she had been placed on a high powered respirator that gave her five hundred breaths a minute, and as a result her little chest vibrated violently. A doctor, upon becoming aware of my presence, came over and told me that Maddie had taken a turn for the worse and was having great difficulty breathing. Furthermore, x-rays indicated that she appeared to have some serious heart issues as well. The doctor then suggested we continue this conversation with Heather.

As I trailed behind the doctor en route to Heather in recovery, I felt like a fool for being so blindsided by all of this. Sure, Maddie had cried like a normal baby upon being born, and yes, the nurses had acted casual when I’d left the NICU like she was a normal baby, but I should have known better than to let myself believe she was a normal baby. Heather and I had been warned many, many times that premature babies like Maddie were in great danger even if they hadn’t had very low amniotic fluid, which Maddie had. I flashed back to our doctor warning us around 21 weeks that we should consider terminating the pregnancy because there was a great possibility that even if Maddie made it to viability (the earliest possible time a baby can be delivered and have a chance of survival), she would be very sick and very well might not make it. Heather and I decided then that we could not terminate the pregnancy even if it meant we might have to go through the hell of losing a baby, but I couldn’t help but wonder now if that was exactly what we were about to go through.

I pulled back the curtain in recovery to see Heather and Linda chatting away with happy expressions, and I felt sick knowing what the doctor was about to tell them. For the next few minutes the doctor spoke about Maddie’s situation, and this time she added that they were considering transferring her to the UCLA Medical Center because Maddie’s needs were beyond what they could care for at our present hospital.

Once the doctor left the mood in the room was very somber. Heather and I asked her Dad if he could go to the waiting room and tell everyone what was going on, and thankfully he agreed. We wanted everyone to know that we greatly appreciated their coming, but that in light of what was going on it was probably best that they go home.

The minutes that followed seemed interminable. We sat mostly in silence, scared and worried. Before too long the silence was broken by a hospital bed being wheeled into the room. It came to rest mere feet away from us on the other side of a curtain. Soon the cooing of a baby was heard, which was quickly followed by jubilant voices saying things like “He’s so beautiful!” and “Look at those little feet!” As laughter and the flashing of cameras echoed throughout the room from behind the curtain, I asked Heather’s nurse how soon Heather could be moved to her private room in post partum. The nurse said it wouldn’t be for at least another forty minutes, so Heather, her mother, and myself sat there in silence listening to this family celebrate the birth of their healthy baby.

Kirk soon came back in to tell me that my parents wanted to talk to me, so I went out to the waiting room. Upon seeing them I immediately broke down. My parents hugged me, and I did my best to compose myself and explain what was happening. They tried to be encouraging, but they were clearly worried. Other families we didn’t know were in the waiting room as well, and, as we discussed the details of Maddie’s situation, you could see people, one by one, stop their conversations and listen in with sad expressions.

I returned to Heather and learned that it had been decided Maddie would indeed be taken to the UCLA Medical Center so that she could be put on Nitrous Oxide, a powerful gas that would help her breathe. While we, of course, wanted Maddie to go wherever she had go to in order to get the best treatment, the one concern was for Heather. She had yet to see Maddie other than for that fleeting moment after she was born, and if Maddie was transferred Heather wouldn’t see her until she was released from her present hospital three days later. Heather’s nurse said that sometimes babies are taken to their mother’s room in post partum for a visit before being transported to another hospital, but UCLA’s transport specialist, who had arrived with a stack of legal papers for me to sign, vetoed that idea in light of Maddie’s condition. What we could do, however, was park Heather’s bed outside of the NICU so that she could get a quick glimpse of Maddie before she left St. Johns.

Heather was told, once her bed had been safely placed outside the NICU, that Madeline should be leaving the NICU in less than five minutes. Linda, Kirk, Kyle, Leah, and I joined Heather in waiting for Maddie to appear, and for some reason I felt like we were a group of paparazzi waiting for a celebrity to appear.

“Maddie! Over here! Maddie! Who are you wearing?”

Perhaps like a celebrity, however, Maddie kept us waiting. After ten minutes she still had not appeared, and a nurse eventually came out to tell us that it would be a little longer. We nodded and waited some more only to have the nurse re-appear again and tell us that the transport team was having trouble getting Maddie stable enough to leave the NICU.

The main problem in transporting Maddie, it turns out, was that the transport respirator only gave one hundred breaths per minute, and at that point it was taking the maximum setting of five hundred breaths per minute on this hospital’s most powerful respirator to keep Maddie alive. Whenever they would attempt to switch Maddie to the one hundred breaths per minute respirator Maddie’s vital numbers would plummet. We later spoke with a man who was on the transport team, and he told us that after about forty-five minutes everyone on the team sort of looked up and shared a frightened look that said, “How the hell are we ever going to do this?” What they ended up doing was hand-pumping Maddie’s lungs which, for some reason, worked.

Finally, an hour and fifteen minutes after we were told she would appear, the doors of the NICU were thrown open and four men pushed Maddie’s isolette past us. The lead man wore a vest that had “SECURITY” written on it and made sure no one got in their way as a man behind him frantically squeezed a pump connected to Maddie. Maddie looked impossibly tiny and oh so fragile as she disappeared through the swinging doors toward the ambulance.

Heather and I had decided earlier that I would follow the baby to UCLA while she, of course, had to stay behind to recover. Splitting up was hardly ideal, but we agreed that the most important thing was for one of us to be with Maddie, so I kissed Heather goodbye and headed off with my parents.

To be continued in PART THREE when Maddie is transfered to the UCLA NICU and faces her biggest challenges yet.