Monthly Archives: November 2010

Learning from a Kangaroo

Crazy Love- Michael Buble

One of the most coveted stages of advancement in the NICU is the kangaroo care sessions. Before the NICU, all I knew about kangaroos was that they were incredibly strong and were considered pests in Australia. Kangaroo sessions in the NICU mean increasing the probability of complete recovery from being premature.  But, before we could get to the kangaroo care, we had to become comfortable with the handling of  our daughter.  Gracie was tiny and fragile while also strong beyond my imagination.

One of the honorable tasks of parenting is changing diapers. It is referred to as “hands-on” time.  It is one of tasks I got to do after the pneumothorax receded. Most parents get to share this special moment immediately after their child is born. We arrived at the moment when  our daughter was stable. 

Pampers seems to be the only manufacturer of micro preemie diapers. The front and back of the diaper is about the size of a post-it note, and they attach via velcro. I would love to see how these Pampers are made. As you position over Gracie for a diaper change, you have to grab her legs above the ankle and lift her up while she squirms and kicks you. Her legs have an uncanny resemblance to frog legs you get at the grocery store or chinese buffet.

Breast milk-fed babies are supposed to have stool which is mustard in color with a seedy texture. I am puzzled by why they have poo which looks like mustard, but I will leave that discovery to another day. As soon I pull the soiled diaper, Ashleigh  immediately slid the new one underneath her, because at this stage there are no muscles to control bowel movements. Gracie immediately urinated on the new diaper and we again replaced it with another one. The smallest diapers in the world were sagging on my daughter. The wiping goes from front to back. Since Gracie’s skin is still immature, any stroking of the skin becomes  very uncomfortable because it feels like tickling.  Her skin is also undeveloped so we have to put antifungal medication on her sensitive areas to combat infections and yeast pockets.  Even the small packets of lotion and ointments you get from the hospital are a waste since Gracie only needs a sliver. After I wiped and handed the old diaper for the nurse to weigh, I realized that not only was my daughter sagging, but the diaper was also crooked and off centered.  I got her situated and put her changing stuff away and closed her isolette. I realized there was something wet on my pinky. It was stool in the drying process. I immediately yelled, “Hey, this is poop!”,  smiled, sighed and walked over to the wash station and scrubbed down. It was good to hear some laughter in the NICU sometimes.  I know that I will receive much more exposure to poop at home, but I just thought that my first exposure would be under different circumstances.  Ashleigh somehow managed to not get any poop on her. This was the pregame show to the main event.

Tomorrow will be the first day that Ashleigh will get to utilize the kangaroo method. This is a skin to skin session lasting for about 45 mins to maybe over an hour dependent upon how Gracie reacts to it. Gracie’s head will be placed on top of Ashleigh’s heart to sync. Although this session is for Gracie’s benefit, it benefits Ashleigh because up to this point Ashleigh’s milk production has been pretty low compared to what she was supposed to be producing. Kangaroo care is supposed to stimulate milk production.  Previously, Ashleigh was asked to hold Gracie up in her hands above the incubator and that short experience within itself generated a good volume of milk afterwards.

Could something as simple as holding her daughter on her heart transform Ashleigh into the source that Gracie needed her to be?


Battle of Adam and Eve

By Your Side-Sade

We were the recipient of news on the third morning of the pneumothorax chronicles.  The results of the routine morning phone call delivered respectable and inviting news. The air bubble had dissipated overnight. The fact that the pneumothorax disappeared on its own was a hurdle we needed to jump over together.  A sigh of relief was exhaled in the Shu household. Any more surgeries would have been detrimental.  The x-rays showed the air bubble gone, however there was still a lot of haziness. An x-ray on the lungs should look clear, Gracie’s looked as if she inhaled white out. Although a preemie’s lungs are extremely underdeveloped, mechanical ventilation is vital to their survival because they suffer from apnea of prematurity (AOP). At this point, Gracie was on two ventilators just to assist with her breathing in case of one failing.  The best way to demonstrate how much of a struggle it is for a preemie to breathe while under mechanical ventilation is for us to use a coffee stirrer as our main device for inhaling air. Not only is this taxing, it is also disheartening.  Breathing is a preprogrammed function for all creatures, but a preemie’s body hasn’t been uploaded with the software and never will. Instead it has to be taught to Gracie with machines and medication. This leads to the brain and lungs not communicating to each for about 20 -30 seconds while the baby sleeps. The fact that she has AOP and is under heavy sedation is a perfect cocktail for disaster.  Her assigned nurse was watching her pressure and oxygen percentages like a hawk. The nurse knew our daughter like my wife did and made adjustments in lieu of  potential spells of apnea. You can usually tell Gracie needs help breathing when she is squirming and kicking. As soon as the indicators show, the nurse immediately compensates by turning up the pressure and sigh breaths. Sigh breaths are like mini breaths sneaked in between normal breaths. . Gracie’s blood pressure continued to be low, however it was slowly improving throughout the day. The jaundice was slowly receding as well. We can never be too keen on Gracie’s success in health.

Up to this point, Ashleigh has been frustrated with how calm I have been with my mentality and laissez-faire attitude.  She has compared me to a wall. I think at certain points in all relationships there needs to be a person who acts like a wall. A wall in which you can talk to, hit and write on. For me, it has been this blog. For Ashleigh, it has been expressing her frustrations to me and being the first reader of every blog entry. I admit that I have been nonreactive to Ashleigh. However, I believe I need to explain the reasoning behind my poker face and actions.  In our relationship, Ashleigh has always been the one in control. It is because I trust her decisions and sometimes I am just too tired to battle the physical and mental exhaustion which stems from spousal debates. All spouses do decide to step over boundaries from time to time, but the important part is knowing when to retreat. Except this time, I knew retreating from my usual calm stand of faith would lead to dire consequences. Ashleigh was entitled to her freshly minted maternal feelings, but needed the comfort of consistency.

One of the most admired doctrines about humankind’s internal struggles in the Bible is the one about Adam and Eve. Both Adam and Eve were the most prized beings created by God. He also created the tree of knowledge of Good and Evil and forbade Adam and Eve from consuming any of its fruits.  The serpent was able to persuade Eve to eat the fruit in order to be like God. Eve was then able to persuade Adam to follow in her footsteps which led to man’s inevitable character downfall. Our serpent was the voice of panic and fear and our  fruit was Gracie. If panic in our relationship had spread, then we would be much worse off as a family then we would be now.  Although panic and fear is not a sin by itself, it eventually leads to doubt. Doubt leads to  the infidelity of one’s faith.  The internal struggles of one will always become the struggle of the couple. Somehow I just knew that Gracie was going to pull through the pneumothorax. If I could only see what was lying on our horizon or even our daughter’s.   

Gracie was making me a better Adam, thus making Ashleigh a better Eve.  The fruit was still on the tree.

Unknown Roomie

Led Zeppelin- Thank You

We arrived at the NICU on Thanksgiving morning bearing ham rolls and desserts for the staff.  Gracie surprised us with a Thanksgiving outfit. This was the first time Gracie had clothes on her; she also had a bow in her hair. The nurses knew that it was important for Gracie to match because it mattered to Ashleigh.  My daughter is now the official and only diva princess in the NICU ward. 

It was the day after the  shut down of Gracie’s NICU room due to Gracie’s unknown roomie’s slipping fight for his life.  He was placed right next to Gracie.  Watching the roomie for two days was like watching someone ice skating uphill.   We arrived and immediately looked for the roomie. Instead, we were greeted by empty space that was once occupied; it looked vacant and hollow. The only remaining memory of the roomie was a computer screen with the word DISCHARGED on it. Strangers to the NICU wouldn’t have even known that a preemie once occupied that space.  The space was replaced with a cleaned and prepped incubator for a future NICU baby. In the two days that he was there, we didn’t get the chance to meet his parent(s). The nurses were constantly working on the roomie and couldn’t let Ashleigh continue with kangaroo care because of the attention he required. Ashleigh knew that at  one point Gracie was the NICU baby which required most of the attention. We were so grateful that she wasn’t the one who needed as much attention. It seems that as you progress through the life of the NICU you get frustrated with the amount of progress your preemie makes until you see how well your preemie matches up with one that was once the same size as yours. Watching a preemie that was born smaller than Gracie was painful; it didn’t help that he was male. Statistically, males are harder to keep alive. The roomie  was  the flip side of the preemie equation I dreaded from day one. I now had a first person perspective on what I was presented with on Gracie’s birthday. He was someone’s  son, but at the same time he battled for his life at 17 ounces. Gracie was born only 7 ozs heavier. It’s unsettling how 7 ozs can determine the life and death probabilities of a preemie. I wouldn’t and still have no idea on how I would be able to handle such a situation. 

During the roomie’s short stay the bilirubin phototherapy lights that were shining  along with 100 percent humidity within the incubator regurgitated flashbacks of when Gracie was born.  He had full support and whenever we were there he would have several bad vital spells. The roomie eventually passed away on the day before Thanksgiving.  Being in the presence of the roomie made me finally realize how much Gracie’s health has improved over time. It was this enlightening point where I mustered up the strength and courage to read her first book to her while her mother kangaroo cared her.  

 The process of holding is a multifaceted approach. Privacy screens were brought in and it was suggested that Ashleigh  disrobe her top so Gracie could get the full effect of the skin to skin contact. Ashleigh changed into a hospital gown and sat in a blue rolling recliner. Gracie’s assigned nurse had to recruit other nurses and  a respiratory therapist to come move and rearrange cords, lines and tubes. Probes had to be detached and then reattached within a minute. All of the alarms ding, honk,shriek  and beep at different intervals.   Since Gracie is on the ventilator, they must compensate for the transfer by increasing her air pressure. The nurses move quickly and communicated effectively throughout this entire process. I now understand why everything in the NICU has to be calm for a kangaroo session to happen. As soon as the transfer is complete, the nurses turn off the lights and a nurse sits within darting distance of Ashleigh.

As soon as the all of the stats settled down, Ashleigh asked me to read. Thanksgiving will mark the day I read Gracie her first book. The book is  The Muppets Thanksgiving. It was about Kermit throwing a Thanksgiving dinner together;  the cookie monster sneaks into the house and takes away the food because he felt like he didn’t need to say thanks or be appreciative. He hated those kinds of feelings. When Kermit’s guests finally arrive to an empty table  they weren’t mad at Kermit. Instead they laughed and went around thanking for the blessings and Ms. Piggy emptied the snacks out of her purse. While the cookie monster was outside peeking in he fell off his standing box and everyone came to greet him. After the laughs the invited and welcomed him to their festivities. The cookie monster finally realized the true meaning of Thanksgiving.

When we finished the book,  Gracie’s stats decided to crash and  they moved her from kangaroo care to the incubator. We then proceeded to change her diaper and realized that her stats crashed because she struggles with her bowel movements. The nurse asked if I wanted to change the diaper and I responded with  “sure.”  I washed my hands and went to town with her diaper. There was some poo, but nothing horrible.  Although the nurse was impressed with my assertiveness towards my daughter’s diaper, she knew I needed some help. She gave me a crash course in wiping a girl. She told me to make sure that I only wipe front to back and every stroke  should be done with a clean side of the wipe to prevent urinary tract infections.  I pulled and closed the new diaper up and handed the filled one for the nurse to weigh.

As people were concluding their day of thanks, I was just starting mine. I never knew that it was possible for Thanksgiving to contain such a pleasant bonding experience.

A Lesson on Gratitude

The Last Resort-Eagles

Last year, we celebrated Thanksgiving at Aunt Shirley’s right after her death. The blessing of the food was tearful and the atmosphere felt lonely and dreary. As excruciating painful as it is to remember her passing, it is also vital to celebrate a  major holiday as a family. When I was a young boy, my interpretation of Thanksgiving was what media and movies illustrated.  It  meant that millions of Americans prepared to travel to catch up with friends and/or family to celebrate one of the most gluttonous eating days of the year. Thanksgiving seemed like a hassle.

 My first complete experience with Thanksgiving was with our next door neighbor when I was a young boy. In college, it was not uncommon for me to spend Thanksgiving alone without the presence of turkey, accompanying sides or friends and family. To me, it was just another day of the week.

In our first year of dating, Ashleigh brought me to Aunt Shirley’s house while apologizing beforehand for any quirky family behavior.  Walking through her door was walking into another dimension.  Aunt Shirley’s greeting consisted of  an extremely large smile behind an apron against a backdrop of an extravagant and colorful tv worthy dinner. Aunt Shirley reshaped my perspective on Thanksgiving. She firmly believed that Thanksgiving was a day of huge significance. It wasn’t just about eating, it was about inclusion and coming to a  realization that we have so much to be thankful for. 

 As millions of Americans hit the road, we sometimes forget that there are some people who are spending their Thanksgiving in a hospital, in the military, or even alone.  We will possibly be spending a good portion of our Thanksgiving in the NICU with the staff while being split from our traditional family Thanksgiving however hard this may be for us. We are also blessed to have a daughter to spend it with.

Two weeks after Gracie was born,  my mother in law planned to have Thanksgiving at her house because we couldnt have it Aunt Shirley’s due to the emotional pain.  However, due to space limitations and additional invitations we could no longer have it at her house. Ashleigh decided to donate our home to host the event. Aunt Shirley’s passing meant that the torch of entertaining was passed on to Ashleigh.  I felt that such an agreement would be unfair to us because we had no idea of how much time and energy we could spare for Thanksgiving.  Our day-to-day schedules were hectic and scheduling cooking and cleaning tasks were almost impossible. On top of everything we knew, that the centerpieces of the menu would have to be carried by us and Ashleigh’s mother.  Ashleigh had already planned on preparing food for the NICU staff, but prepping for an entire family gathering was another story.

As we tackled the logistics of arranging tables, finding silverware, ironing table cloths, cleaning the house from top to bottom  and cooking, we realized that we were slowly running out of time, patience and energy. There was still so much to do and so little time.

As the night concluded,  we sat down to eat our Wendy’s dinner and Ashleigh made her usual evening phone call. The NICU receptionist told Ashleigh that the room was closed and it didn’t have anything to do with Gracie. Days before, they admitted a 1 lb 1 oz baby and he was paired in the same room as Gracie. Thanksgiving wasn’t about eating, logistics, contributions or even frustration with menus. Instead of focusing on who and what is brought to the table we should focus on how we arrived at the table. Having a home is a privilege,  being able to share and fill a home  is a blessing.  

This journey has been a crash course learning experience on how to be a better man and person.

Letting It Ride

Calling All Angels- Lenny Kravitz

The OR recovery room had become Gracie’s new temporary home. She shared it with another baby due to overflow and staffing schedules. Gracie still retained the title of smallest and most premature in the NICU. She was still under heavy sedation and remained swollen from the amount of fluid built up in her body from the PDA. My daughter looked exhausted from her battles. I doubt that she could even muster up the strength to cry even if her ventilator tube was removed from her throat. Most parents had the option to hold and comfort their babies. We only had the option to place our hand over her body firmly to offer our warmth.  Our hands were wide enough to be her blanket. I took the liberty of putting my pinky in there for her to grasp. She immediately grabbed my pinky while clinching and unclenching it. My pinky was still too big for her to wrap her small hand around it. I wanted to think that these grasps were flex clenches instead of pain clenches. The only comforting thought for me is that she will never remember these past 48 hours for the rest of her life. Blinking screens, alarms, tubes and air pressures from the ventilators are all ancillary to my daughter’s survival. The tube running into her chest was just another tube inside her already complex maze inside her incubator.  The background dings and beeps are a constant reminder that my daughter is still alive.  Frustrated and powerless are words that couldn’t even express the feeling within our hearts as parents. Standing idly by while our daughter was  battling for her every breath destroyed all of our desires to breath for ourselves.  Watching our Gracie battle  surgery, complications and symptoms made us her biggest fans.

The doctors and nurses  attempted everything from using a needle to draw out the air to using the chest tube. X-rays have been mapping my daughter’s hazy immature lungs from day one. At this point, we knew Gracie’s lungs like we knew the back of our hand. The number of Gracie’s x-rays already surpassed the number of cards in a deck. The persistent air bubble continued to sit in the lower right hand corner of each x-ray like a stubborn mule.   The mule was so lonely that if felt like it needed company. Jaundice quietly returned as if it needed a farewell tour. This was something which the staff expressed was  abnormal. Anytime the word abnormal is used in the NICU  there is a reason for concern.  In theory, by now Gracie should have been able to deal with the disposal of bilirubin on her own.  To combat the jaundice, they moved to a more aggressive approach and replaced the traditional blue overhead and underneath photo therapy to a more aggressive light.   This light looks just like a miniature high-powered xenon spotlight with a flexible head. Days like this made my life feel like a contradiction.  

Gracie’s immediate threat was the air bubble. The last option on the table was to call in a surgeon to open her back up and realign her lung. Living life down to the wire was as dangerous as letting it all ride on one color in roulette. How a bubble caused so much distress was beyond my comprehension.  Gracie dealt with not only heart surgery, but now faced the possibility of lung surgery right after it. No amount of preparation and time would settle our nerves completely when dealing with this chain of events.

The nurses kept reassuring us that preemies are tough and resilient and ours was especially feisty. Every piece of bad news received made us more emotionally numb. Gracie has never been more addictive in our lives to watch or take a part in.  Every time her back was up against the wall she would find some way to pull through by a hair.

On the Bubble

Circus- Lenny Kravitz

The only thing faster than Republicans replacing Democrats on the bubble of political solvency was the bubble forming inside one of Gracie’s lungs. Before this bubble was discovered there were plans to return Gracie back into the general NICU ward by the end of the night.

After the PDA surgery, an air bubble/pocket was discovered in Gracie’s lung that was collapsed during surgery. I am interchanging the use of bubble and air pocket, but she technically has an air pocket. The air pocket is the size of a bubble in relation to our size.  In order for the  PDA surgery to be completed,  the lung farthest away from the heart must be deflated  to effectively reach the vessel. This is done with a chest tube. Sometimes the doctors like to leave the tube in the lung after sugery, while others remove it if they feel comfortable with the progress of the surgery. An air pocket in the lung is called a pneumothorax.  A pneumothorax is caused by the collection of air in the space around the lungs. This buildup of air puts pressure on the lung, so it cannot expand as much as it normally would when Gracie took  a breath. She had to take multiple breaths for every normal breath.

This condition caused Gracie’s blood pressure to plummet. Once this was discovered, the nurses wanted to wait to see if the bubble would dissipate on its own, while closely monitoring it. We immediately asked how to treat it and they said either it went away on its own, they would draw the air out of the lung with a needle , or stick a chest tube through her rib cage into her lung. This helps drain the air and allow the lungs to re-expand.

Even though this wasn’t an expected outcome of the PDA surgery, it was disturbing for Ashleigh.  Ashleigh had grown too confident of Gracie’s progress. As a parent, you hope for the best for your child. As soon as Ashleigh got over one mountain  and thought the worse was over, another summit  presented itself. Being the parent of a preemie requires you to be constantly prepared for the unexpected. There is no such thing as preparation.   It is almost impossible for every day of the preemie’s life in the NICU to be uneventful. If you were going to plot the progress of a preemie, it would most likely resemble the action of the DOW Jones Industrial Index.  This was another hazard for us to dwell on  through the night. We politely declined Ambien’s invitation.  

The next day’s routine 7:40 AM phone call startled Ashleigh with the news  that they were considering a chest tube to relieve Gracie’s pneumothorax. In the past 24 hours, Gracie endured a heart operation and was in recovery. Meanwhile, they wanted to reinsert a chest tube into her 13 inch body. The resiliency of Gracie’s body and spirit is remarkable, even in times of distress.

Ashleigh got off the phone and was displeased with the conversation. To calm herself down the night before, she had persuaded herself that the bubble would go away on its own. The morning news proved her wrong.  She needed to embrace the fact that Gracie’s life was not only going to be a rollercoaster, but it was going to be an epic mountain climb through the worst possible weather. The amount of stress that Ashleigh endured up to this point has not been healthy. It was slowly taking a toll on her physical recovery from the delivery. 

Gracie spent her second day in the OR recovery room with a chest tube protruding out of her chest. I knew she wouldn’t be comfortable in the  confinement of different sleeping positions. The one piece of good news from the 24 hours has been the arterial blood gas results have been stellar compared to the pre PDA days. Although there was more to go, this was something which was resolved.

One of the things that Ashleigh was told was that the PDA surgery would set Gracie back to the beginning. This felt a lot like Monopoly where you drew that heinous card of going straight to jail with passing go and collecting the cash. The neonatalogist, however, did offer us a sliver of hope; he said that Gracie’s growth was going to accelerate at a much more aggressive pace than we had been seeing so far. Ashleigh had trouble resolving her feelings from starting back from the beginning. We were both ready for some more astonishment.

The Neonatologist kept telling  Ashleigh to calm down and that Gracie is going to be ok and suggested to her that she needed to get  some rest.  We were also informed that Gracie does feel pain although her central nervous system is still underdeveloped.  We wished we could explain to Gracie that her pain was only going to be temporary and it was for her own good. The feeling of failing to protect your child from harm as a parent is horrendous. The feeling of inducing pain on your child tests ones moral dexterity and sanity. Her pain medication was administered every four hours intravenously. The amount given to her should knock Gracie out, but she just kept on kicking like an energizer bunny. Her inherited stubbornness is a trait I look forward to meeting and combating.

I had a previous conversation with her neonataologist the day of the surgery while I was guarding our belongings, and he commented on Gracie’s active movement. He said that out of the a hundred babies he treated at this gestational age and who were given that volume of sedation, 95 of them would be knocked out cold; Five would still be awake, but only four would be this active. I love how Gracie is continuously defying the odds. This should be our family theme.

Ashleigh and I wanted desperately to read Gracie her first bed time story, but we didn’t think we could make it through an entire book. Most children’s books end in happy endings, but there is still a negative residual feeling of defeat lingering in the back of my soul.

A Leap of Faith

This is to Mother You-Sinead O’Connor & Mary J. Blige

Gracie Girl,

I know that your father is writing this so that one day you will know what a great work God has done in you, but I thought you should hear from your mama. We have been on a crazy ride these past few weeks. You have had incredible days when your blood gas levels and vent settings are great, and there have been days when you have struggled. Last night was the latter.

You were weaned from the jet ventilator a couple of days ago. I was so proud of you and thrilled to see that we were making some progress with your breathing; however, I think you were weaned too quickly, because you began to tire last night. It was miserable to watch you struggle to take every breath. You looked at me (at least it felt that way) in desperation.  I felt so helpless, because there was nothing I could do to help you, but pray.

 I prayed that God would give you strength and comfort you. I prayed that He would continue to heal your lungs, and help the doctors to figure out how best to help you. Then, I prayed a scripture that was given to me by a friend about week after you were born. I have spoken these words over you and for you, for the past several weeks. Psalm 118:17 says, “I shall not die, but live, and declare the works of the Lord.”

Gracie, your life is already a testimony to God’s divine power. You were perfectly formed in my womb and so incredibly beautiful. I am not sure that one could deny that there is a God after seeing your tiny body, strong will, and fiesty personality. You have done some incredible things in your short time with us. You brought your grandfather back into our lives, allowed your father and I to reconnect with old friends, and helped people to know and believe in God.

 You have also taught me that it is okay to find strength in weakness. There are some days when I have a hard time breathing; it hurts so much to be separated from you knowing that you need me. I don’t think I’ve cried this much in all my 28 years. I have had submit to your father and allow him to lead me in this journey. I have also learned that people genuinely want to help me, and I need that. I cannot do this alone as difficult as that is for me to admit. You have also reminded me to trust God and the plan he has for us.

As I reflected on your struggles last night, I prayed for God to give me something to help me make it through the day, because I didn’t think my heart could stand anymore. He sent me the song “Blessing in the Storm.” We have been blessed many times over during your hospital stay by friends, family, and hospital staff members. God also told me that this storm is passing over. Gracie, you are fighting this battle with the prayers of so many people. There will be several storms that come and go in your life. Please, learn to trust God and plans he has for us even when things seem unbearable. As your Bebe says, “God doesn’t make mistakes.” God has given our family this test, but I know He will be with us every step of the way. You are such a fighter! I am so proud of all you have done, and all I know you will do.



A Gamble vs an Investment

Walk On- U2

"The Skywalk"

A gamble is defined as a bet on an uncertain outcome. An investment is defined as devoting, using, or giving of time, talent, emotional energy, etc., as for a purpose or to achieve something. The decision to proceed with the PDA surgery was an investment in Gracie’s future. The risk was death and the benefit was the preservation of her life. As parents we wanted the latter.

We were never given an exact time for the PDA surgery because it was entirely dependent on the schedule of the pediatric cardiovascular surgeon. The first estimate we were given was 11:30 AM and then it was pushed further towards 1:30 PM. The only information we knew at the time was that the surgery would take around 45 minutes. The anesthesiologist called us earlier in the morning to discuss Ashleigh’s medical history. Ashleigh informed him that she had asthma and often had an attack when she came out of sedation. The doctor warned that with these kinds of surgeries and tolerances, the main focus was internal bleeding. The risk was magnified because there are only fractions of millimeters of space to work in such small patients. He proceeded with telling Ashleigh that he would have Gracie completely sedated through surgery and well into recovery. The conversation ended with the reassurance that this was a routine procedure and the hospital was very good at it. We found out the day earlier that the hospital’s rate of success of resolving the PDA was at 99 percent and this high level of success was achieved through their only pediatric cardiovascular surgeon. I scheduled our departure from home at around 10:45 AM with my wife and mother in law. When the clock hit 10:49 we received a phone call from the nurse telling us that the surgery was scheduled back at 11:30. The nurse asked for consent to proceed with the surgery preparation and Ashleigh gave it to her. We suspected that it was due to the fact that the bad blood gas levels from the morning were getting worse. The nurse told us to take our time in getting there. My mother in law called her mother to ask the pastor to meet us there. As we were getting towards the hospital, Ashleigh asked why everyone was driving so slow. I told Ashleigh that everyone was driving the usual speed, but we were just in a hurry.

We pulled into the children’s hospital drop off point at 11:20. I told Ashleigh and her mother to leave their stuff, and I would bring it up to them after I parked.  I got their belongings and rode up the elevator onto the third floor and walked to the entrance of the NICU. Due to the excess of belongings, I decided to wait outside as I knew that the NICU would be filled with moving doctors and staff.  I found myself staring at “The Wall” again.  The operating team turned the corner towards the NICU entrance and walked with a mission. One was carrying a red Igloo cooler (blood).  As they walked in, Ashleigh and her mother exited with Ashleigh hunched over. This hunch is the exact same one my mother had when she was walking towards my brother’s funeral site.

We slowly walked to the skywalk and waited to meet the cardiovascular surgeon. Ashleigh needed to use the bathroom but couldn’t because she told the doctor of our location. It wasn’t long before Ashleigh’s bladder won over her emotions.  I hustled back to the waiting area after showing Ashleigh the restroom and was greeted by our pastor.  We sat and waited patiently as we saw a medflight helicopter land. As we pondered about its contents we saw a stretcher with a plastic cube with life support equipment barreling down the hall into the NICU. I didn’t see any accompanying parents. I could never imagine what the parents were feeling on that drive or the fact that only one parent was fit to drive while the other has to stay behind. Having to choose between a partner and a child is a devastating decision. That was the same feeling I had when Ashleigh went into the operating room.

Multiple doctors and nurses were coming in and out of the NICU.  What followed them were a parade of incubators, ventilators, machines and other support staff. Ashleigh returned from the bathroom to catch the tail end of this orchestrated parade. I felt a deep sense of sorrow for the parents and family.  Ashleigh was frightened as this parade of machines flowed by. I told Ashleigh to calm down while the staff were running into the other end of the NICU. I couldn’t imagine the chaos in the NICU at that moment.

This event made my heart skip a beat. A little later,the pediatric cardiovascular surgeon came out and told us that the they were preparing for surgery. She looked calm and collected. The procedure was broken down step by step. They had to collapse a lung to get to the vessel. In doing so, the surgery could take longer because as they are looking for the vessel the oxygen levels may drop due to the babies of this gestational age being fickle.  This doctor was a wordsmith and knew exactly how to tell parents that surgery on preemies of this gestational age had increased risks. In order for the oxygen levels to come back up they had to step back and wait for about 20 mins for oxygen levels to be raised again.  She assured us that the surgery time would between  forty-five minutes and hour and five minutes and not to put a timer on her or progress. I wanted to ask her to be careful, but it seemed like a redundant request. As soon as she left, a baby in the NICU began to cry. Gracie couldn’t cry while a ventilator tube was still in her.

We sat in a windowed skywalk which captured the view of the cascading  mountain range. We were sharing this view with the operating team and Gracie. An hour later, the pediatric cardiovascular surgeon came out to greet us and she said she was extremely pleased with how the operation went and that Gracie’s oxygen levels barely dropped during surgery. The doctor left as swiftly as she arrived down the skywalk. The good news lifted a huge burden off the skywalk. My mother in law shut her eyes and prayed. The nurse came out told us that we had a wait a few minutes for the team to clean up and prep Gracie for an x-ray. She would come get us when Gracie was ready. We hesitated to announce the surgery’s success to the world until we had visual confirmation. The nurse came back out and invited us into the NICU recovery room. The recovery room is a room within the NICU and looks and feels just like a holding room. It is a solitary confinement area staffed with one nurse at the time.   All the initial readings were better than expected. The length of the incision was the length of an adult pinky fingernail close to her armpit.   The nurse was smiling and said that Gracie was slowly coming out of her sedation and that she would continue to be given pain medicine combined with a sedative.  We were informed that there was little blood lost (<2 CC) and she was healing perfectly. She said that the x-ray machine was coming up and that she was going to do a blood gas test in a short time. The pastor, Ashleigh and I looked in awed at our warrior princess.  The pastor held Gracie’s foot and we held hands and prayed. As soon as he departed, the x-ray machine arrived. I decided to come out and relieve my mother in law from her guardian duties as she needed to meet her recovering granddaughter.

As I was waiting and watching over the belongings, I saw a mother in a pink sweatsuit clinging to her baby on her chest. She was flanked by a nurse on both sides. One nurse was pushing the transporter and the other pushed the baby’s iv.  The baby had a tube running through his head. The mother’s feelings were about as transparent as the plastic in the baby transporter . She resembled an exhausted mama grizzly. This skywalk represented more than just an extension into another building, it was the path which bared the most wear while never showing it.

Decision 2010

In Better Hands- Natalie Grant

Decision 2010 was forecasted to be one of the greatest party transitions in the history of the country. The party transition was determined by angry and discouraged Americans wanting a bipartisan voice in Washington and within their local governments. The underlying theme of the 2010 theme was ludicrous government spending.  Airwaves were filled with tacky and overpriced attack ads.  Time and time again I kept hearing Barack Obama saying ” I love Rick Boucher” even in my dreams. Democracy is a funny concept  because our votes are always directed towards candidates with “sound”   immediate impact policies. Few voters will examine the long-term impacts of these same policies. In our household Gracie’s life was being attacked and we were her voters.  Ashleigh and I were debating on an issue which we only had acquired knowledge on for about two weeks.

Ashleigh was informed that indeed Gracie needed the PDA heart surgery(ligation) and called me crying. The corrective surgery consisted of making a small cut, or incision, on the left side of the chest. The surgeon reaches in and ties off the ductus arteriosus, or divides and cuts it. Tying off the ductus arteriosus is called ligation. This is an invasive procedure that is done on 80 percent of preemies and quite routine. The PDA moved from 3 to 1.5 to 1 and now was back up to 1.7.  The nurse told Ashleigh that the size of the PDA wasn’t that large, but Ashleigh told the nurse that the size has just gotten 70 percent larger. Ashleigh’s voice sounded  terrified and filled with sorrow. Although there was nothing I could say to console  Ashleigh, I have been adamantly emotionally preparing her for the possibility that surgery was still in our horizon. Prior to this report Gracie had been doing well, and Ashleigh had been falsely building up hope. Time and time again preemie parents love to play chicken against the house odds of preemies. Like a casino, the house always wins.  The staff explained that Gracie’s post op recovery would be 24-48 hours under heavy sedation in the OR recovery room.   This room looks overlooks the cascading mountains of Northeast TN and has two doorways one glass and the other one an industrial swinging door.

Even invasive surgery with the most promising results invites pessimism. This pessimism is exponentially amplified by he fact that your daughter is 2 lb 2 ozs and less than thirteen inches long.  I have secretly spent the two past two weeks preparing an action plan to  repair this household if something happened to Gracie during or after the surgery. My mind drew blank solutions.  All I could ask was do we need to make arrangements? How would I tell my side of the family? How do parents bury their children?  The only comparable experience I possessed  was when I was younger one of my sisters was born as a twin. Her twin brother died in the womb.  My mother, father and myself were offered to view my brother’s body. We all politely refused.  I sat with my mother and father through the entire funeral process.  On the day of the funeral, my mother and father gave me a camera for pictures and I took a picture of my mother crying and struggling to walk from the car to the burial site of my brother. That was a difficult day for our family because we knew we lost a family member, but we never had the opportunity to meet him. 

Dealing with a horrific end result of surgery would shatter us. I have met and touched  Gracie. Without a doubt I knew that this was a living and breathing human being with part of my soul.  She was already a part of our living family. How could we ever forgive ourselves for making a wrong decision?   I had no idea how I was going to support Ashleigh or even fill the gigantic void in our lives. Gracie’s arrival has been one of the most beautiful gifts to open. However, watching her health deteriorate has been like watching a horrific car crash in slow motion.  Her life was in our hands.

Trick or Treat

Thriller- Michael Jackson

I never expected to celebrate Halloween with my daughter this year. Gracie’s trick or treating experience was confined to her incubator.  The NICU staff was gracious enough  to take her Halloween portrait.  For Gracie’s treat, I brought her a king size Reese’s Peanut Butter Cup. I laid it outside of her incubator and took a picture of it as a reference to her size. I wanted to prove to her that I had given her a treat on her first of many Halloweens. Gracie should be spoiled on her first Halloween.  The sad thing was that the king size Reese’s was longer than she was.  Although it was funny, it was also me teasing her. Hopefully, she will get to experience a peanut butter cup at least once in her lifetime. It is one of the finer things in life, that is if you aren’t deathly allergic to it.

Afterwards, we went home and greeted our niece with her Tiana- from the movie Princess and the Frog- costume, without the frog.  She smiled and said, ” Trick or Treat”. I told her I wanted the Trick and she smiled at me. She was with my brother-in-law and his girlfriend. She was also followed by her own personal crew of paparazzi. I can’t even imagine doing this with Gracie. My daughter could potentially pass for a real life Barbie doll this Halloween, only cuter.

Halloween is one of the most revered holidays for a child. It’s the only holiday where parents can throw a great sugar filled party for their children with cool orange frosting and corn shaped candy. It’s also the most legitimate day to scare your kids, eat an apple that’s bad for you and when Ashleigh begins her long stint of consuming honey crisp apple cider. 

Ashleigh made sure to take care of the staff at the NICU with pumpkin whoopie cookies. I overheard a conversation one day where a nurse suggested to a group of other nurses Dominos for lunch, and the group responded with “We had Dominos yesterday.” Based upon multiple  conversations amongst nurses, they order out a lot or eat downstairs in the cafeteria. This is partially due to their challenging schedules. I think that as much as people promise to bring food or make something for the nurses, the promises usually never pan out. Our family has a different approach to this. Food has always been a social networking tool because it is always made with love. Aunt Shirley was not shy about sharing her recipes or letting you observe her culinary creations. Afterwards, we could go home and use the same ingredients and measurements and still couldn’t duplicate the flavor/texture.  Our conclusion is that if you put enough love into the dish that you are making you will always end with a dish like no other. Ashleigh cookies were a huge hit because they were made with love for the NICU staff.

While in the NICU, we consider the nursing staff and doctors as an extension of our immediate family.  This not only helps us to become closer to the nurses, specialists and doctors in the NICU, but we also count on them like we count on our own family members.  Our extended family have shown nothing but loyalty,  dedication and honesty during our visits. All the NICU nurses are women and most are parents. They are the guardians of our babies and we have been granted the key to the castle. Access comes with open arms and smiles.  Most parents will never experience a NICU life or the life of a preemie parent.  This results in a the NICU field being constantly overlooked. However, the  NICU field plays a significant role in all research regarding prenatal care for all to be and expecting parents.  Being overlooked doesn’t mean they underperform, these people are the first and last line of defense for  our babies.

So remember in the  upcoming holidays to do something special for the NICU staff not because you have to, but because they spend most of their time taking care of your most valuable possession. A small token of kindness is the least we can do to express gratitude.