Monthly Archives: December 2010

Soft Serve


Hit Me with Your Best Shot- Pat Benatar

My mother- in- law was recovering from a cold, so she hadn’t seen Gracie in a while. When she arrived at our house, we told her we had a surprise for her. Gracie had been so upset with the SIPAP nasal mask that she continuously pulled it off. Not only did this frustrate her nurses, it also negatively affected her stats. The nurses and doctors suggested that they switch her from the SIPAP to the high- flow nasal canula. The SIPAP was also rubbing Gracie’s nose raw. 

We were ecstatic that Gracie was off the SIPAP, but concerned that she has skipped a step in the weaning process. Babies are usually placed on the CPAP which gives constant pressure but no sigh breaths.The high- flow canula delivers 1-6 liters of oxygen per minute at a purity content varying between 24-35 percent of humidified air.  Gracie was at the 6 liter mark and at maximum oxygen purity. Again we couldn’t get our hopes up, because at any point she could be dropped back to mechanical ventilation. 

 My mother in law walked in and saw Gracie’s complete facial profile and smiled. Gracie’s forehead extension from her arterial line was also removed. The doctors were confident enough at this point to begin doing her blood gases via heel pricks at longer durations.  Confidence is a precious commodity in the NICU and can never be insured.

We measured her temp and  brought her out and I placed her in my A-shirt  with my cardigan. Cardigans have become a staple in my closet. My daughter was calm and I did my best to shield her from the billi-lights from the struggling triplet next to her. We read and rocked her and then placed her back in the isolette.

  When we finally put her back, we decided to change her diaper.  Kangaroo care usually allows Gracie to have an  easier bowel movement. This has to do with our body heat and gravity. Her diaper had a nice unproportionally large surprise. We presumed that she had completed her movement until we removed the diaper. That is when Gracie, the soft serve dispenser, arrived. I wasn’t quick enough to grab another diaper because I was still wiping with a wipe. The wet wipe caught the poop. Meanwhile my wife and mother in law were laughing and gagging. Ashleigh said she was surprised that I would even catch my daughter’s poop. Gracie may have cracked a smirk, but I was too panicky to even pay attention. 

Dealing with poop involves a little bravery along with some improvisation.  Even if her poop came out like old faithful in a soft serve form, I am glad to catch it with my hands. Gracie’s nurse also laughed. After the nurse was calmer, she asked if I was ruining her newly made bed. The nurses explained that Gracie does this frequently along with most preemies. This is because most babies of this size lack control of their own bowels.  

Nurses state that there are times in which preemies can shoot poop all over the inside of the isolette. I am sure that there will be a blog entry about that at some point.  A small amount of poop was on her newly made bed and we used a new wet wipe to clean it up. We cleaned up and placed the poopy wet wipe in her discarded diaper for the nurse to weigh. I went to wash my hands so I could measure her temperature.

Ever since I was a kid I have always welcomed challenges. I have realized and accepted that the parent of a preemie will remain a constant struggle.  From day one I prepared myself for this challenge and I am  willing to take as much poop as Gracie is going to give me.  I welcomed the poop challenge even when other people took a step back.

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A Baked Potato


Fortunate Son- CCR

We walked into the NICU armed with books and a pleasant attitude and were instead greeted by an arterial line coming out of Gracie’s head. This was a surprise to the both of us. I showed it to Ashleigh and she responded with ” what is that freaking thing?”  The arterial line looks like an alien probe extruding from a forehead. This line was used to draw Gracie’s blood for her blood gases. The reason behind this location is because her other line had collapsed or dried up. This location was the most stable and would stay open the longest for her blood gas tests. This odd fixture and the SIPAP made Gracie’s condition look worse than it really was in reality.  The SIPAP is a ventilation mask placed over the nose.  Gracie’s graduation from mechanical to SIPAP was a huge step. However, the arterial line coming out of her forehead grounded our excitement.  Until now Gracie’s lower face profile was covered by the mechanical ventilator pieces and tape. Now we could see 85 percent of her face. The ability to preview the lower portion of our daughter’s face was a treat. When we walked  in, Gracie was awake to greet her, still flanked by two of the three triplets. We measured her temperature and  I finally got to kangaroo care her for longer than an hour. I decided to wear a brown cardigan and an a-shirt. The a-shirt allows us to drop her inside to best replicate the kangaroo experience.

Fathers of preemies or babies should always spend as much time possible holding their babies. It is one of the most rewarding experiences as a new father. The baby’s chest or head is placed on top of the father’s heart. This helps the preemie regulate their temperature and their heart rate along with their breathing. A father can feel the heartbeat and the lungs at work while the preemie blows spit bubbles on his chest. Gracie’s hands and feet dug and clasped onto the skin of my chest. The only downside about kangaroo care is that you can never look at your daughter’s face because it’s pressed against your chest. It was also particularly difficult this day because she had the arterial line coming our of her forehead. Gracie still smells like a new baby. Johnson and Johnson babywash mixed in with breast and formula milk. It’s as impossible to duplicate as the new car smell. 

 Every preemie reacts to kangaroo care differently. Gracie likes me for my warmth; she also likes for me to support her butt with my hand.  Kangaroo care increases the recovery speed and lessens the amount of time a preemie spends in the NICU. A lot of males like myself worry that touching a baby will hurt them. That is not the case. Touching them increases the emotional bond you have with your baby. This moment resolved all of my reservations about hurting little delicate Gracie. When we opened up her drawer to get her thermometer, we found the two books we thought we left the night before near “The Wall.” One of the books was Dr. Seuss’ Best Nest. A good Samaritan had turned our lost books into the staff. Gracie’s kangaroo session warmed her up  to 99.6 degrees. She felt like a little hot potato after being on my bare chest.

We stayed in the NICU for three hours and it was worth every minute to watch me attempt to slowly adapt to a moving hot potato with nails on my bare chest.   My chest was her oven and I was making my daughter fluffy inside.

An Unlit Fuse


Mother and Child Reunion-Paul Simon

One of the triplets occupied the corner spot of the roomie who recently passed. This corner spot irked us and we would probably fight against being placed there. Today,  Ashleigh overheard the doctor talking to the triplets mother about staying. The father had arrived and suggested that his wife return home because she was stressed and lived a significant distance  away.  The nurses suggested and offered a room at the Ronald McDonald. The Ronald McDonald house is a facility which allows parents and family members to stay within a close distance to the hospital. The costs are minimal to none. Having a Mac house available is one less thing  the parents have to worry about during their children’s stay.

They warned the mother that the baby girl had extensive level four bleeding in the brain. This bleeding is called intraventricular hemorrhage (IVH). This was a scenario which we thankfully never had to endure. We were thoroughly warned, but withstood the threat.  The doctor continued  to illustrate to the mother the worst case scenario with the amount of bleeding in the brain. This level of bleeding leads to to an increase of chances of intellectual disability and cerebral palsy.  However, like all of the other doctors, he wanted the mother to remain as positive as possible. Being this positive is terribly difficult when you are faced with these potential end results.

According o the March of Dimes, only 6 percent of babies are born under 28 weeks. In babies born before 26 weeks, only 20% will have no long-term problems. This has been a number that our favorite neonatalogist continues to throw at us over and over again.

After a little digging, I found out that about  34% will have a mild disability, such as cognitive impairment or nearsightedness. 24% will have a moderate disability, including but not limited to visual/hearing impairment or cerebral palsy with the ability to walk. Finally, 22% will have more severe conditions of the latter.

Asking a parent to be positive throughout this process is a lot like lighting a fuse. You have no idea what you are going to light. This news sent shivers up my spine because watching or hearing about other babies fighting for their lives feels like a beat down of your conscience. You want to offer some kind words of hope to the parent, but with preemies you are always left with the fine print.

Asking a mother to give more of her love towards a dying child could drive her towards insanity. My mother has yet to meet her granddaughter. But she did call Ashleigh when Gracie was first-born to get Ashleigh to calm down. However, the follow-up phone calls to me exhibited my mother’s true fears about Gracie. My mother was worried to the point of making herself sick. I didn’t tell my mother about the PDA surgery, pneumothorax, jaundice, respiratory issues, risks or anything else  with Gracie because I knew she would worry herself. All I could say to her was whether or not Gracie had a good day or an OK day. Most days all I could only force myself to say to my mother was that Gracie was stable. Being this vague for now is the best thing for my mother.

Our neighbor’s mother had a child at home while being with her three children in the NICU. This was more than a handful. Mothers deal with the difficult job of balancing priorities and roles between home and their babies when it comes to preemies. We too will be faced with that delicate balancing act, because from this point on, all of Ashleigh’s future pregnancies will be delivered at 36 weeks. 

I have decided that because of the close proximity between Gracie and her neighbor, I will make sure to read to both of them. Somehow I just know that a human voice does wonders for a preemie. It is an opportunity for a baby to listen to something else rather than the mechanisms around them.

It is difficult as new father  for me accept the fact that more than enough preemies will not survive at the end of the day, but I can’t accept to stand idly when I can offer a preemie some comfort through reading. I hope that Gracie can understand that I did share her quality time with her neighbor, but I  hope that she understands and will do the same if she were in my shoes.

When the first roomie passed  I watched his health slowly deteriorate while I stood by not knowing how to help him. This was  my opportunity for redemption.  Her roomie neighbor was born at 1 lb 14 ozs. I wanted her to experience a comforting and fun voice at least once.

Unanswered Prayers


Shattered-OAR

 

Inside the children’s hospital, there is a chapel. It is sandwiched between the hospital gift shop and the restrooms.  It seems like a  nondenominational chapel with stained glass. Tall cushioned squared back chairs usually face  the sermon pedestal. Today there were pews.  After our visits with Gracie, I usually drop by the chapel while Ashleigh uses the restrooms next door.

This chapel is significant to multiple families. I know this because the prayer box is always full. It has become an outlet for desperate parents and family members.  The chapel represents a place where people who have been knocked down can request another  chance to stand back up or even an extra moment with a loved one. Although this chapel has been empty every time I have been there, the prayer box tells the truth.

 The chapels’ prayer box has a wooden top and four clear sides overflowing with prayer slips. Next to it are writing utensils and a pad. Today there  was  a prayer facing out written by a parent of an admitted child who had a mystery illness. The parent wanted to request that God protect his son and help the doctors in diagnosing the mystery ailment. The parent explained that they were from out-of-town and were in an unfamiliar place. Reading this prayer you could sense the fright and urgency behind this father’s note.  I wondered about the age of this note and whether or not his son got better. 

There are multiple in-house resources for parents and families when their loved ones are admitted into the hospital. But one thing that becomes lacking amongst the commotion is a quiet place. Between the doctors, nurses, family members, alarms, neighbors, awkward sleep cycles,  traffic and tv the sounds and chaos become unbearable. Emotions get pent-up and the high stress  levels prevent people from decompressing.

The chapel has been my quiet place for about two minutes when Ashleigh is in the restroom. I did a lot of errands when Ashleigh was recuperating from surgery while my daughter was upstairs in the NICU . When there was a  spare moment, I would stand and look out of the window into the parking lot. Now that my time has been occupied by trips to the hospital and other projects; the chapel has become my window. The chapel has given me an opportunity to reflect after every visit with Gracie and count the multiple blessings around us.

Gracie’s progress up to this point has only been because of a multitude of prayers combined with Aunt Shirley watching over and talking to her. It’s strange sometimes because we have never felt that Gracie is alone even when we leave her. Sometimes when we look through the isolette, our daughter displays a tiny smirk. I know that I am a funny guy, but Aunt Shirley was hilarious. We had a strong inclination towards naming Gracie after Aunt Shirley because she desperately wanted to witness the birth of our child.

 This painful road has brought us closer to her during these holidays. Her voice echoes in our kitchen when we make her dishes, and this has been the way God is communicating to us. Throughout this process, I haven’t felt one drop of internal anger. It is has always been in my understanding that God always wants us to have faith, but needs our faith to be tested from time to time in order to feel our love for him. Being in this chapel after every visit has allowed me to keep the faith.

Gracie’s extended hospital stay hasn’t been a curse.  It has led us on a path of enlightenment to show the true value in our lives and the imprints we have left on others through our experiences.  We do not wish that any parent experience what we have gone through, but we just wanted to validate the emotions and struggles of every preemie parent along with their friends and family members who are feeling helpless. Prayers are never left unaswered.

Safety Blankie


Collide-Howie Day
A test was given to Gracie today. The decided to extubate. Extubate means that they remove the endotracheal tube from Gracie’s airway. Previously, we were told that if they went with this route, the chances were pretty good that they would have to reintubate. However, the doctor wanted to try because he saw that Gracie was constantly active in the isolette. She was also on minimal oxygen support with a minimal amount of sigh breaths. Being on the ventilator has made Gracie lazy by using the ventilator as a crutch.  Ventilators also cause microscopic scars in preemies lungs and may cause difficulty in swallowing and breathing later on. Gracie could also be more susceptible toward future infections. We wanted Gracie to graduate, but we enjoyed the luxury of a security blanket for us.

A Synchronized non-invasive Positive Airway Pressure (SIPAP)   is a form of Continuous Positive Airway Pressure (CPAP) which is used to deliver a constant air flow into a preemie’s nose. The constant pressure keeps the air sacs in the lungs  open and helps prevent apnea. SIPAP/CPAP usually delivers more pressure than a nasal cannula. This is the intermediate step between a nasal cannula and mechanical ventilation. It gives the staff the luxury of adjusting the percentage of oxygen while maintaining support if needed.  Up to this day, Gracie’s blood gas tests along with her O2 levels have been fluctuating between excellent and acceptable. The SIPAP/CPAP can maintain constant  oxygen levels. If the SIPAP/CPAP approach failed, they would have to reintubate. This is a painful process in which they force Gracie  still while they slide a tube into her airway with zero anaesthesia.

 The procedure to extubate was done after I left the house for work. Ashleigh was visiting Gracie during the day and we would return that night. I was already exhausted and the rain from the night before left a heavy fog. I was unsure of what to expect when seeing Gracie. We were greeted with a SIPAP/CPAP. It resembles a snug nose mask.  If Gracie hated being touched and hated the lines on her face, then pulling this thing off her nose would be her greatest challenge to date. I only wonder what will happen next. It is not uncommon for them to extubate and then reintubate if the preemie gets worn out from the demands of breathing.

Whenever these scenarios are presented to parents, you are always looking at the caveats. Ashleigh was worried about Gracie’s constant struggle with breathing to the point of hyperventilation. Her tiny chest would show her ribs whenever she took a breath. It just wasn’t fair that she was doing this alone by herself.  Gracie wasn’t consistent with her breaths per minute.

I was worried about the apnea episodes. This process could easily compare to teaching a child how to ride a bike without the training wheels. There will always be lots of scrapes, cuts, tears, scars and bruises, but it is a much-needed skill to acquire. Teaching Gracie to ride a bike will be cinch for us, because our patience will never wear thin. Our daughter, unlike other children, had to learn to breathe. 

Due to her being on this new breathing apparatus, we couldn’t continue with kangaroo care. We had to give her time to adjust. When we came to visit, we walked up to an isolette where our daughter was wide-eyed and attempting to pull the SIPAP/CPAP off. 

Gracie has been a fighter from day one and has made sure that everyone knew what she didn’t like. If something like the SIPAP/CPAP was being forced on her, she made sure her stats showed she was angry. My daughter wasn’t scared of a single soul’s threat of spanking her. Ashleigh commented that she had to restrain Gracie’s little hands  a few times when she attempted to pull off her SIPAP/CPAP.  

I wondered if there were any other alternatives to the SIPAP/CPAP if Gracie was having  so much difficult dealing with this nose mask? We didn’t want to ask because the SIPAP/CPAP was proficiently proven to accelerate a preemie’s breathing regimen.  To our right, one of the triplets was breathing with the assistance of two machines on full pressure and oxygen. We were there once, and it was terrifying to listen to the loud sounds and whirls while watching our daughters chest jostle like a vibrating bed. We were going to take what we earned.

Graduated License


Match Box Twenty- Mad Season

It was planned that I was going to have my big day. Ashleigh made me shower when I got home and change from head to toe in a kangaroo friendly outfit. For women, nurses recommend loose tank tops or hospital gowns to fully experience the skin to skin contact. The nurses suggest that men wear hospital gowns. I found that because the room temperature can swing drastically daily, the best option is to wear a cardigan above an A-Shirt(wife-beater).

 I was scheduled to hold Gracie via kangaroo care. The wait to hold her was like waiting in line at the DMV to get your picture taken for your driver’s license. It is a significant step in life where an individual graduates from a learner’s to an actual unsupervised license.  It is one of those quiet personal celebrations that everyone goes through. The only difference is that the percentage of those graduating from their learner’s is much higher than a preemie’s survival rate.

Ashleigh was so excited about tonight’s visit.The nurse from the previous night has promised to let us assist in giving Gracie a bath and letting me hold her for the first time.We were greeted with the unpleasant surprise of Gracie’s nurse giving her a deep scrubbing. Ashleigh was disappointed, because she really wanted to assist in this process. The nurse had secured bubbly warm water in a pink plastic container and was scrubbing Gracie with J & J baby wash. This was our first viewing of Gracie’s wipe down. After the nurse was finished, she got some gauze and dipped it in sterilized water to remove some dried crud from Gracie’s eyes. She was given another Rastafarian crocheted  hat to wear, and I provided my hand as a blanket. Ashleigh asked if we could hold her, and the nurse said it would be unlikely because after scrubdowns a preemie has difficulty bringing up their core body temperatures.

By allowing a preemie to get cold, he or she spends too much energy burning calories on heat production rather than using it for fat and weight gain.  It was strongly suggested that we leave Gracie in the temperature controlled incubator to dry and warm up.  I would have to return to get my license to hold my daughter.

Three of the isolettes had billi-lights. The room was more than toasty and filled with preemies. The nurses were running around dealing with the new triplets. Staff and people were running around while multiple  bells and whistles  were concurrently  going off in all the corners .The triplets were there a little over a day. Ashleigh hadn’t gotten the opportunity to meet the mother of the triplets yet. We were watching over Gracie while chaos ensued. The nurse said that Gracie was having a great night. She wasn’t fussy and she was actually the quietest one in that room. That was out of character for Gracie, because she was usually the dominatrix of attention.

It wasn’t long before the triplet’s mother was rolled in by a nurse. There was a great amount of familiarity with her. It was because she looked exhausted and was dressed in a tie up hospital gown with slipper socks.  She was blonde with blue eyes and had no make up on; her hair was curly at shoulder length. She spoke softly with a southern draw.

X-ray machines, ventilators and more billi-lights were rolled in  and the neonatalogist on call was checking the triplets and while readjusting medication and support for the triples.  The neonatalogist on call was new to us. He seemed like he was of Indian descent and had no accent whatsoever. After things calmed down, he eventually came over to talk with us.

We spoke about Gracie’s vitals and he felt that Gracie was progressing well. He set some goals for Gracie such as getting off the mechanical ventilator in the next two days and to increase the feedings. He was worried about Gracie’s volatile weights swings. It was still a mystery to him and the NICU why true weight was static.  He insisted that Gracie was still the smallest star of the NICU due to her progression from day one. She still held the lowest gestational age throne as well as size. The fact that our daughter was a central star in the NICU reassured us that Gracie was in capable hands.  It was good for us to hear that Gracie’s survival meant as much to the staff as it did to us; she would truly be a success story.

As the mother worked herself around the room to her last and smallest triplet, I noticed that one of the things she did was look at Gracie’s info sheet. Gracie was born at 24 almost 25 weeks and her daughters were born at the 29 week mark, almost 30 weeks. Gracie’s birth has been a spiritual and emotional uplifting for many people.  It is amazing how happy she makes people, and she hasn’t really opened her eyes yet.  The nurses asked the mother for the names of the babies and she gave them all classic and beautiful names.

As a father and husband, I was frightened by the fact that she may be doing this all alone. All of her babies were under billi-lights from above and below them and all three had oscillating ventilators.  Being a single parent of a preemie is difficult, but being a parent of three preemies requires a professional organizer. I wondered if this woman was ever in shock.   There were no signs of a ring, but this was not the time nor place to ask.  If she needed help, we would be there for her.  Gracie’s vitals crashed while we were there and we waited until they came back up.  We left the NICU to its new madness.

A Home Away From Home


When Can I See You Again- Babyface

Gracie has been receiving prayers on a daily, nightly, weekly and monthly basis. We have been fortunate enough to have a minister who has gone out of his way to visit and pray with Gracie.  One night, our minister showed up to NICU and asked to see Gracie. The NICU refused to let him in, and he demanded to speak with the charge nurse. The charge nurse called us and we gave her permission to  let him in.

From day one, we have always welcomed divine intervention on behalf of Gracie.  Although I am a firm believer in science, I am also a believer that faith pushes science to innovate. Although our minister does not wears his emotions on his cuff, he does share our beliefs of how faith is defined through small miracles. He gets constant updates from our family and shares them with our extended church family. This has brought a tide of cards and wishes our way. The role of a church and minister  have become invaluable to our family.

Just five years ago, I would have never imagined  to have a home church. When Ashleigh and I married,  there was no question as to which church I would be part of. Although our current church isn’t ideologically perfect, it is a perfect fit for us. This has been and is Ashleigh’s home church; it is the church where all of Ashleigh’ family attends and have taken an active role in its function and growth.   

This minister married and baptised us, and although Ashleigh has a few theological disagreements with the minister, he is still ours.  One of the things I never could understand was why Obama stuck with Reverend Wright until the point of no return. Today, I understand the internal struggle Obama dwelled on privately.  Obama’s minister was still an imperfect being, however he introduced and shared his ministry with Obama. This man married both Obama and Michelle and baptised his daughters. Obama felt obligated to this man.

 Before Gracie’s birth, Ashleigh and I did  not completely agree with every single one of  our minister’s interpretations on Sunday, but we both believe that individual experiences mold our personal beliefs differently. However, we respected this man because he truly believes in so much that he’s sharing. This man’s divine gift  introduced me  to Christianity by illustrating that Christians are propelled by humility, compassion and love.  He has shown us strength through prayer. This man  presided over Aunt Shirley’s difficult funeral.

 Aunt Shirley’s faith was the strongest and contended well with our minister’s. Our dream is to eventually experience the faith that Aunt Shirley experienced.  We are glad that Gracie will be able to follow in the footsteps of Aunt Shirley by having a church to always turn to.  There are many ministers in this world, but only one married my wife and I and he will also baptize my daughter. He has earned this privilege and right because faith has carried Gracie above the odds.

The other night we had two deacons stop by our house after they visited one of our terminally ill church members.  We welcomed them in, and we sat and chatted. These deacons are our family friends. Prior to Gracie’s birth, Ashleigh led one of the Wednesday night youth groups at the church. Both of the  deacons daughters are under Ashleigh’s care on Wednesday nights. Ashleigh has also been a tutor and role model  for the daughter of one of the deacons. 

The deacons wanted to check on us and Gracie. Both haven’t kept up with my blog, but a wife of one of the deacons checks it daily through Facebook  and gives updates during dinner conversations. We showed a picture of Gracie and all of the things we had from Gracie; blood pressure cuff, picture  and diaper. The men were taken aback by the size of items. It’s whimsical  to catch people’s facial reactions to Gracie’s size. We gave them an update and the great news that her PICC line was scheduled to be removed on the following day. It was good to have physical visitors at our home to share such excellent news.  

The deacons said that when Gracie’s birth was announced everyone was shocked, because no one knew Ashleigh was pregnant. Ashleigh’s pregnancy was the most tightly guarded secret in our marriage due to technicalities during the pregnancy. Gracie was born a month after we told our direct family members. We ended the meeting with prayer.

The meeting was great because we haven’t been to church since Gracie’s birth.  We were warned that being in public places with lots of people increases our exposure to viruses and bacteria which we could then transport back to Gracie. We shower and change clothes before every visit. Every step a preemie parent makes has to be calculated. To get an unexpected visit from our church family was a good reminder that our church was still there for us even in our absence.

Our Achilles Heel


1234-Feist

Upon entry, our little friend was there and the nurses had set up a little station for her to color. When we walked in the room, her eyes lit up and the first thing she asked was, ” Are there any books in there?” pointing to Ashleigh’s Vera Bradley tote. I smiled and said “of course”; she then proceeded to ask if I would read them to her. I told her that I would as soon as we were done getting settled with Gracie. She smiled and waited by continuing her coloring, letter writing and drawing.  

As we were getting settled and getting an update from Gracie’s nurse, we found out that Gracie was about to get her blood gas test.  Previously, they were able to draw her blood from a tapped vein; this was because she was getting blood gas test done every four hours. Now, as she was progressing and the tapped veins were closing, they decided to utilize the heel as the source of  blood for her blood gases. We got to finally witness them taking blood gases from Gracie’s heel.

One of my female coworkers had a more mature preemie than Gracie. Today, he is an active and rambunctious kid. This Christmas, she agreed to get  him a dirt bike and let him live out his dream as Evil Kenevil. What he doesn’t know is that his mom is getting a remote kill switch for his bike. She has shared with me her NICU experience, and the one thing she clearly remembers is when her son had to have his heels pricked for blood gas tests periodically. Her son still has scars on his feet today and that is why she continues to grab her sons feet and kisses them profusely. When she shared this experience with me, I thought it was gross and asked if she was going to continue this foot fetish into his teenage years. I can relate with her now.  

Previously, thew drew blood out for her blood gases. However, lines are only good for a couple of days to a week. Once the vein collapses or dries up on its own, they have to find different places to draw blood. As the last one closed,  they felt confident enough in Gracie’s skin to poke her feet for the blood gases. A band-aid covered the poked heel. We were told that they alternate the heels daily.  This day, they pulled out a pink gel pack to numb Gracie’s foot before pricking it. As soon as it was numb, the nurse apologized to Gracie first and proceeded  pulled off the band-aid and got ready to prick. But her prick wound hadn’t healed and, as she squeezed, her heel produced blood on its own.

We saw Gracie kicking and fighting the nurse while her mouth was open attempting to cry. She still had a ventilator tube, but her facial muscles, squinted eyes and expression said it all.  I am going to regret the day she is able to produce tears of her own. Ashleigh and I keep telling ourselves that she will forgive us because she will never remember this.  Parents feel emotionally strained when they go against their innate feeling to shield their children from pain.  

Towards the end of this process, our little friend’s mother decided to leave, while her daughter kept insisting “but he’s going to read me a book” over and over again until they left. I felt like I destroyed the highlight of that girl’s day. 

The good news is that  the doctors weaned her down to low to high twenties of oxygen. This is a huge improvement over the 40 percent she was on before.  They also reduced her sigh breaths and pressure settings. We didn’t get a chance to hold her, but we did get to read her Little Bear Goes to the Zoo with me partaking in zoo animal sounds.  The book is about a little grizzly cub who goes to the zoo with mama grizzly. He gets separated and searches for his mother amongst the zoo animals. That was followed by Beatrix Potter’s  Peter the Rabbit via Kindle on our droid phone. Reading is slowly becoming a pleasant second nature to us.

Gracie is moving right along in her recovery. She was at 2 lbs 6 ozs. Although, this means that she was showing the same weight for two weeks, we were glad she was maintaining some stability. Her feedings were still the same at 5.5 ml per hour. The doctors at first attempted to ramp up her feedings, but she ended up  retaining fluid. This forced them to pull back on the feeding approach.

After we left and called back, they said she had a crashing episode.When they suctioned her out they pulled out chunks of residual buildup in her lungs.   These chunks were causing Gracie’s lungs to squeak and rattle when she took a breath.

Was Gracie’s digging her heels in?

Little Miss Bossy


There She Goes- The La’s

One of the things we have always wanted to do, but never had the courage to attempt was to read to Gracie.  Today was the day to start our reading routine. The book we chose was perfect for our tiny diva.  It was called “Little Ms. Bossy” by Roger Hargreaves. It is part of the Little Miss and Mr. Men series.  This is one of those small books about certain characteristics that every child experiences through their first years of socialization. The books do a stellar  job of teaching children character.

 We have started a routine in which we read to Gracie every day we see her. Reading one book was difficult for us to do, but eventually we were looking forward to reading multiple books per visit. We decided a long time ago before Gracie was born that we would create a library for our child. We have invested the time and money in finding classic hardbacks. Even though we are part of the digital age, most of our newspapers, magazines and books come in a pulp form. 

Pulp gives the reader a unique experience and we wanted our child to share that with us. It’s also something which can be physically passed between people and requires social interaction. Reading to our child every night was going to be infused into our nightly routine. We just didn’t know that we would be starting this early and be in the NICU for everyone to hear.

When we arrived, we found a new male neighbor in Gracie’s ward.  The visiting mother of the male preemie brought along her daughter. The daughter’s eyes lit up when I pulled out Gracie’s book.  The little girl sat inches away from us prepared to listen. When I completed the book she insisted on me reading the book directly to her. Her mother was trying to calm her and prevent her daughter from being a hassle. I asked the mother for permission and began reading  to her daughter. In order to occupy more of her time, I asked questions on each page to reinforce her comprehension skills. Her answers were impressive and proved that she was keeping along and understanding the moral of the book. This kept the NICU universe calm while her mother and brother were bonding and Ashleigh was bonding with Gracie. It also prevented the nurses from being babysitters. It’s amazing sometimes what a little time, care and attention can do for a small child. Reading is such a wonderful way to bond people.

The first thing Ashleigh does when she visits Gracie is she pops the openings to the isolette and places her hand on Gracie’s back or chest. This gives Ashleigh an indicator of the condition of Gracie’s wheezing. I am surprised of how effective a human hand is compared to a stethoscope within the NICU. It was also a demonstration of a mother’s complete understanding of her child. This time, Ashleigh felt more wheezing than normal.  The nurses told us that Gracie was now battling a water based bacteria found on her endotracheal tube. The good news was that she had been taken off sodium and potassium supplements.

 Up to this point, Gracie has been on diuretics which have a tendency to flush out these two elements. Taking her off these supplements meant that she was able to keep and maintain her levels even with the diuretics. Sodium is used for cells to communicate through the transmission of signals  and potassium is used for vital functions such as heart and muscle control and development. Having her chemical support taken away is a good sign for Gracie and her kidneys. Because her lungs are the last to develop, her x-rays showed they were still hazy and would be for a long time especially with this new infection.  Another round of antibiotics were administered for her.

The news of a water based bacteria led us on another string of detective footwork. We evaluated the way we washed bottles, steam cleaned in bottle approved bags, and the drying process.  We looked at every step from the disassembling and reassembling of pump parts. We even looked at the process of breaking the seal on her milk bottles before we poured the milk into them for freezing. We no longer opened the freezer bottles until we were ready to pour the milk in. Previously, because of convenience, we opened the freezer bottles before we pumped to ensure a quick pour. 

Few people will be able to relate to the personal responsibility preemies parents place on themselves while paying attention to detail. All this to ensure the health and safety of their delicate babies.

Although we were back on familiar grounds with our daughter’s health, we were as prepared as we could ever be with this round. The realization that our daughter was getting better as well as getting worse seemed like an unusual oxymoron. All NICUs slogans should be “NICU: as long as you believe, anything is possible.”  You will never hear the word “impossible” within the walls of the NICU.

Transforming Sorrow


Pretty Wings- Maxwell

Two of my college friends who married one another visited Gracie on a Sunday. On our way down there, they gave me a call telling me they were going to be late due to car seat installation issue. It was fine and we welcomed more free time to spend  one on one  with Gracie. The day before, I offered them three suggestions to consider before entering the NICU. It wouldn’t be wise for anyone to enter the NICU sick. Bringing a baby in wasn’t advisable due to possible RSV and other bacteria.  Finally, I warned them to not be shocked by Gracie’s size.

They arrived with their game day blue NFL  jerseys and their daughter’s brown and pink transport ensemble. This family makes me smile whenever I see them due to the uniqueness of their relationship. The husband  is an honest character whose perspective on things is so true it is comical. The wife is more reserved, but like typical couples, makes the bulk of the decisions.
They work very well together as a team and share similar passions and interests.

Due to the fact that a parent could only bring two visitors at a time,  I decided to stay outside while they visited  Ashleigh and Gracie.  I agreed to watch their daughter as they went in. I directed them on how to effectively wash up to their elbows and the direction of where Ashleigh and Gracie were.  I figured 30 minutes would have been a breeze with a baby. I could have never been more mistaken. They recently had a child and although we lived 20 minutes from each other, our constant hectic schedules allowed us to see each other about once a year.  The husband and I were close before, but things changed when we each married and got jobs with polarizing schedules.

He was the first one to exit the NICU after their visit. His wife was worried about me and their daughter and sent him out. When he exited, he found a sleeping daughter in a stroller with a slight drool. At first, I figured I could entertain their child by making faces and doing dances. That immediately made the baby girl cry.  So, I jumped behind the stroller and pushed her around the entire floor of the hospital. She grew quiet and I wondered how the people watching the NICU camera were reacting to the  chain of events outside of their door. I was able to stroll their baby until she slept. The husband seemed a little surprised to find his daughter was asleep. I responded by telling him what I just went through to get this end result. He laughed and said she loved the stroller; he congratulated me on my daughter’s birth, length and beauty.

As we were talking outside of the NICU, a medivac team rolled down the hallway towards the PICU with a young boy. The father was holding his son’s  iv bag while holding his son’s hand. The boy’s face expressed pure fear and the father was trying to maintain calmness. I knew what he was feeling. He couldn’t honestly tell his son that everything was going to be alright or even have the courage to muster any feelings of encouragement.  Not a word was spoken amongst the father, son or crew as they wheeled by.  

My friend commented that he felt bad for the children and  parents who had to go through this experience.  I agreed with him, knowing that I was one of those parents he felt sorrow for.

Parents who experience what we have gone through come from all demographics. Wealth won’t accelerate the quality of health in these types of facilities. Doctors will always tell you first and foremost that they want only positive energy. When they see you stumbling over an emotional hurdle, they will constantly remind you that you have to remain positive through this process.  They firmly believe that preemies adapt to the vibe of energy from their mother. It’s refreshing for us to see that the physicians who rely on science every day are the ones asking us to have faith. Prayers, optimism, care, love, encouragement, compassion and forgiveness are the only legal tender items which bare any value in such a facility. 

Throughout this process, all we could ask for were prayers for Gracie, hoping that they would pave the road for Gracie to be closer to us. Sorrow is usually what you feel when you are an observer, get admitted and/or when you leave your child behind for the day. However, watching this place assist with letting your child make it another day delivers hope. The fact that we had a facility this close to our friends and family was a blessing in disguise.  A self-sustaining facility in this region which could offer so many resources and services to their patients and families became  amazing. Nurses and doctors become familiar extensions of our family who  impact our lives with empathetic perspectives and honest opinions. These factors make us stronger for Gracie.

Sorrow hadn’t left instead it has been transformed into hope. I wish that the father walking with his son in a stretcher will  experience this transformative process as well.