Monthly Archives: January 2011

Transitional


Five for Fighting The Riddle

One of the most important functions we can do for our children is to promote literacy. Literacy is a transitional skill used for all learning and communication in a civilized society. I have always believed it as an important skill which needs to be developed and nurtured as early as possible to answer life’s greatest riddles.  Today, we read a book from Dolly Parton’s Imagination Library collection titled  A House that Jack Built  which we purchased through a used book store. Although I signed Gracie up for this program within the first week she was born, I was extremely eager to see the caliber of books this program provided.  

My research on the program led me to believe that it is an early childhood literacy program which provides a free book  every month from birth up to the age of five. The program started as a rural project in East TN and now included most of North America and the United Kingdom.  The first book everyone receives is The Little Engine that Could and the last book is Look Out Kindergarten Here I Come.  We followed A House that Jack Built with A Badger’s Meal. Both books kept me on my toes because they were lengthy and forced the reader to recall previous events through memorization and symbols which is rare in most children’s books.

Ashleigh held Gracie as I stumbled with recalling specific events within each book. Both seemed to laugh at me as I was trying to read and recall certain events and symbols. We followed up the reading with the changing of the diaper. Surprisingly, diaper changing can be a comfortable routine with enough repetitive exposure. My diapers are more symmetrical and no longer sag as much; the entire process take no longer than one minute. Gracie smiles at me sometimes when I wipe her and I wonder what she is thinking about.  Ashleigh wanted to sing lullabies and after the first two we had to look up lyrics for other ones on the internet via Google. That was pretty funny and embarrassing.

The joys of parenthood also include nursery furniture shopping. Some people go with room packages, while others such as us want to make it as clean, contemporary and transitional  as possible. We as a couple decided to shop for Gracie’s dresser. Although this is a not a huge spectacle of any sort for a normal family, it is a huge ordeal for my wife and I because she is an avid HGTV watcher. I am usually in the same room as she watches these shows. On behalf of all husbands/significant others,  I would like to curse this channel to eternal damnation.

To my wife, furniture should not only serve a function, but create ambiance in the house. This is because she is a firm believer in finding contemporary pieces which have traditional accents. This helps in balancing between modern and classic.  Prior to physically shopping for Gracie’s furniture, we explored all online outlets and catalogues in an effort to hunt down the perfect dresser. This was a huge task because this dresser was to serve as a changing table, storage, and an accent piece of Gracie’s room. It was so huge that Ashleigh opened up the box of crib parts  to grab a side piece of the railing  and carried it around from furniture store to furniture store. We physically went and left each physical brick and mortar furniture store with disappointment.

 We were left with one option and it was a factory direct warehouse.  The factory furniture warehouse was were we found multiple pieces which best matched Gracie’s crib. The piece I originally found was tucked away in a corner and we became worried about it being too large for the room. We asked for other pieces and were led to a piece which was a miniaturized version.  Ashleigh examined the piece by imagining uses for the open shelf space along with drawer space and imagined putting things into them.  She measured the height and wanted to know how well it would fit a changing pad with a baby in it. We took measurements of the piece and went back home to to look for a changing pad which would fit via online retailers.

An SUV, cross over or minivan is a must have with kids because it transports people, family, items and space. Since Gracie’s birth we have utilized our full-sized suv to it’s full capacity to haul large pieces and loads to and from storage along with large furniture pieces. A must have is also a leather interior to resist stains and wear.

If things went well we would come back the next day and purchase the transitional dresser. One major cornerstone of the nursery was within grasp on our path towards the nursery’s completion.

Hitting the Bottle

 


A Long December- Counting Crows

Ashleigh had the opportunity to feed Gracie for the first time. Gracie’s first maiden voyage bottle was given to her by a nurse, but the consolation prize of the second bottle was Ashleigh’s .  It was a day to remember because every parent knows that you have to feed your child, but how many parents remember the exact moment you fed your child for the first time?

Feeding is a primal act that is resource intensive, frustrating, memorable and bonding.  Feeding children seems like an endless task especially when they live with you or when they bring home their friends. Anyone with teenagers or adult children knows that they must keep endless snacks for visitors. One of the things I do when I go to my mother-in-law’s house is raid her pantry, because Ashleigh refuses to keep junk food in the house. My wife believes that junk food is equivalent to paraphernalia.

 Common items my mother-in-law keeps in stock are but not limited to: Twinkies, cupcakes, fruit snacks, Oreos, real potato chips (not baked)  and everything else which contain ingredient names are multisyllabeled which take up half the packaging.  I have a tendency to eat what I can’t pronounce.  I hype myself up on the sugary snacks and go home to crash.  Although I am prematurely worried about the effects of sugar and processed foods on Gracie, I think it is an experience she can’t miss out on because my niece has shared my joy in those kinds of foods as an infrequent treat; she also experiences this environment and seems to do just fine. How we treat Gracie and her exposure to these kinds of snacks will be a test of time. What I do know is that these snacks are taste palette friendly and Gracie will have to experience these kinds of things.

One of things the staff wanted was for Gracie to develop a sense of the bottle. The texture and flow of the nipple along with the process of suction. Gracie’s wasn’t expected to take the entire bottle, and they also didn’t want her to expend all of her caloric energy taking the bottle. We never expect Gracie to hit the ground running.  This would have created a caloric loss which would lead to weight loss.  

Gracie’s growing plan is executed like a military operation. It has divided between the primary objectives and coupled with secondary objectives. Her primary objective  is to rest, heal and gain weight. Secondary objectives include feeding and maintaining core body temperature.  

Ashleigh experienced the bottles after effects with a bowel movement like no other. According to multiple accounts the poop was horrendous. There is no doubt right now that Gracie’s digestive system is growing and working like a small diesel engine. The poo was proof enough to the doctors that they could pull her off  the arithromycin which was prescribed for the reflux.

Christmas is a few days away, and we are excited about spending it as a family together. Although the venue isn’t where we want it to be, we are in the safest place. Ashleigh’s family is dying to see her but understand the circumstances with limited visitation.

My family is also scheduled to come in during the holidays and juggling between house guests and the hospital will be challenging but rewarding in the long run. This will be the first time that my sisters and mother will meet Gracie. They are excited and nervous about seeing Gracie in her condition. The excitement comes from them being newly minted grandmother and aunts, the nervousness comes from Gracie’s painstaking slow progress in her condition. Gracie hasn’t been held by people other than her parents and nursing staff and won’t be for a while until her mother releases permission. 

Holding Gracie contained enough satisfaction for us. Having a full belly and falling into a deep comatose slumber was proof that she was satisfied beyond a reasonable doubt.

Fashion Sense


I’ve Fallen in Love with You- Joss Stone

Today, we were greeted by the sight of  Gracie dressed in a shirt top and a pair of pants with footies.  Ashleigh was over joyed because this was the first time a complete outfit was put on Gracie. Putting on clothes is a redundant and insignificant act everyone does daily,  but transforming nakedness into a fashion icon is art. Gracie was finally growing into an icon herself.

 The statement that kids grow up way too fast is holding water. We can already tell that Gracie will have a definitive style in life.  Before Gracie was born, I swore to buy gender neutral clothes. Since Gracie’s birth,  most of the items we have bought or received have been pink.  I must admit that my daughter looks fantastic in pink.

 As she grows older, her individual sense of fashion will become more refined and developed. The sight of Gracie in a complete outfit with her cute face awake and smiling made her mother cry because her daughter was becoming a little girl.  Gracie greeted us with alertness while  her limbs were wailing around.  The donated outfit was chosen by a person who understood Gracie’s cuteness.

Our daughter has a confirmed case of osteopenia of prematurity. Which is another term for osteoporosis in a premature infant. Although this condition is harder to diagnose, x-rays usually do a good job of measuring bone density. One of the issues with dealing with osteopenia is an infant becomes easily susceptible to bone fractures. This just means that we will have to treat her like a Faberge egg. It’s ironic that her human will is as strong as titanium, yet her external shell  remains fragile like an eggshell.  

Tonight, her first bottle feeding was scheduled. In order for Gracie to be discharged, she has to master the art of bottle feeding. Sucking on a pacifier and bottle feeding is a motor skill which has to be perfected over a period of time. It is an innate skill which has to be discovered.  The staff confidently believed that Gracie was ready to take this next step in her motor skill development.

The pacifier has been used as a learning tool towards the use of a nipple.  I never imagined that taking the pacifier was going to be this difficult. It is amazing how we are watching our daughter grow from a fetus to an actual infant on a day-to-day basis.

It seemed just like yesterday that Gracie was learning to breathe on her own and today she was going to be bottlefed. The main challenge behind bottlefeeding Gracie is making sure she breathes while not aspirating. Our daughter had to learn to pace and not overexert herself.  The gavage was a method in which we were becoming too comfortable with.  

A gavage was just a machine which would slowly inject the food into Gracie’s stomach. Gracie would now have to work for her food. Without a doubt, this next obstacle was going to be another uphill battle.

When we called later on in the night, we learned that she took 10 mls of her 24 mls. The nurse said that the first three milliliters were scary because Gracie was filled with excitement over the flavor of milk. The excitement got to her head because she forgot to breathe which caused her vitals to drop. The nurse decided to give Gracie a break coupled with a burp. This was done to ensure that Gracie would pace herself. Exhaustion set in after  10 mls and they gavaged the rest. This was a step in the right direction; the first but not last time Gracie will get tired from eating like we all do during the holidays.

A Fortified Path of Love


Walking My Baby Back Home-Natalie Cole (Duet with Nat King Cole)

One of the issues with parenthood and growing up is the fact that you have to make sacrifices for your children. Sacrifices are always made under the cloak of love. The sacrifice I made was to move all the workout and play equipment from our third bedroom, aka gym, into a storage unit.  I decided to spend a day moving stuff into the storage unit by myself in our large suv.  

Although I was getting help later  in the day, I was not going to make other people move our stuff. I spent the morning breaking things down and moving the boxes of books into the storage unit.  Ashleigh determined that these items were not essential in this house at this exact moment in our lives. However, these things can be used at a later point. As we were boxing things up and moving things around, Ashleigh was putting together and moving things into Gracie’s room.

Getting her room together is a painstakingly slow process. However, it has to be approached with diligence and tenacity. The last pieces I needed help to move out were also the heaviest. I needed help with out workout system and my coveted foosball table. For that, I needed my uncle and brother-in-law.

I made sure to get pizza and drinks for my movers when they arrived. Meanwhile, Ashleigh spent the morning at the NICU. She met a nurse who was extremely helpful and loving.While Ashleigh was there, the nurse offered Ashleigh blankets during her kangaroo care. She spoke with Ashleigh about how love and care heals babies. She reiterated that all babies needed was love and she said that is the only thing we can give them at this point in their young lives.

Gracie was now utilizing tank oxygen.Physically, Gracie was suffering from stage one osteoporosis because in a normal pregnancy a baby is supposed to absorb calcium through the mother’s blood and placenta.  However, we didn’t get to that point, so she is suffering from calcium deficiency. Gracie’s additional calcium intake will have to come from breast milk, liquid vitamins and other supplements through milk fortifiers.

Traditionally, osteoporosis (bone mass loss) is a disease mostly affecting the elderly. In our case, it affects our daughter in her early years. To prevent her from suffering from this disease again later on in life,  we as parents will have to take proactive steps from infancy through her adolescence.

Gracie will need to develop bone mass and strength as quickly as possible in order to ensure her skeletal health for later on in life.  It’s one of the things we have to approach with vigilance and caution when  Gracie is growing. We will need to provide her with Vitamin D  to assist her with absorbing calcium during her infant years and follow it up with plenty of vitamin D during her adolescent years as well.

Currently teenagers are shying  away from Vitamin D and milk  during their growing years. This is due to trends in dieting and increased access to fast food.

One of the things Ashleigh and I were able to experience as young children were nightly family dinners at the dining room table. My wife is an amateur chef who treats her kitchen as her personal canvass. She doesn’t believe in eating organic, but she does believe in eating fresh. Gracie’s arrival in our life has forced us to take steps in addressing proper nutrition and the dietary and social importance of having healthy family dinners every night. 

The reasons why Gracie will be so susceptible to osteoporosis later in life  is because of Gracie’s prematurity; she is starting out at a low bone mass compared to her counterparts. Being  given steroids at an early age to stimulate her respiratory system also causes slow development. It took what seemed forever for Gracie to develop her digestive system on her own.  Slow gut development means a less efficient system of nutrient absorption.
 
In order to gain bone strength we will have to walk together, exercise regularly with high impact activities, while teaching her the importance and of a healthy diet combined with a healthy lifestyle to prevent the onslaught of osteoporosis. This path of love will be fortified with calcium, vitamin D and our exercise equipment.

Mr. Butter


Civil War- Guns N Roses

Gracie gained  a new neighbor.  A thin mother in her early to mid twenties just had a preemie son. She also has a three and four-year old at home in Coeburn.   A nurse was conversing with her about  scheduling additional visits and the mother struggled to come up with an answer. The nurse immediately followed up with, “is it because of a ride issue?”  The mother said “yeah” and that she would be back midweek  dependent upon the weather.

We overheard nurse conversations that one of our critical care preemie ex-roomates from the other room had to be transported to Vanderbilt due to some complications and a broken collarbone. His parents came infrequently in what we assumed transportation and monetary issues. We wondered how difficult it was going to be for them to drive all the way to Nashville without any kind of support.

The mother of the triplets arrived and smiled at us because one of her triplets was sharing the room with us in the feeders and growers section. She talked to us about her about being torn between two different NICU rooms and about how great it was that our daughters were growing together.

I did kangaroo care and read The Butter Battle Book by Dr. Seuss. This was the first time I have read this book, and I never realized how deeply it spoke and illustrated the need for perpetual peace. It showed that acceptance of differences followed by forgiveness is more powerful than any weapon man can create.

Ashleigh wanted some answers to her questions and wanted me to get a hold of the neonataologist. Luckily for us, he was doing rounds; unfortunately for Ashleigh it was her least favorite doctor. She gave him the nickname, Mr. Aspergers, because she  diagnosed him with the mild form of autism.

He walks over with his personal push desk and grabs Gracie’s chart folder and opens it on his desk. I greeted him and told him that Ashleigh wanted something to worry about today and asked if he could answer some questions. He smiled and answered with the response, “Sometimes parents want an individual with authority to quiet their fears.” Ashleigh always jokes that if I was a doctor i would probably be a carbon copy of him.

After addressing Ashleigh’s question about rapid breathing, he mentioned that Gracie was progressing along well, much better than he ever anticipated because for a long time he felt that Gracie wasn’t going to make it.  He followed up with an idiom related to pool about Gracie being behind the eight ball for a long time.  A statement such as this from a doctor to a patient’s family would infuriate them, but since we knew the interaction style of this doctor, I just laughed because I warned Ashleigh that he would give her an Asperger’s response. He is the one doctor you don’t want to ask for a few uplifting positive words, but Ashleigh insisted on talking to him. His lack of social skills continued onto the next patient and nurse.

 The funny thing is that this is the only doctor who wears children friendly or holiday themed  ties and offers the most odd sense of interaction with adults and children. The nurse had to begin the conversation by asking how he was and he stated tired. She  coughed. A normal doctor would have asked if she was alright. This one  stated that the  cough sounded like GE (gastroesophageal reflux disease).

As he rolled his cart onto the next patient its parents walked in and instead of working on that chart, he just rolled his cart away from them into another room. He spends so much energy on avoiding human reaction.  I was sitting there deeply amused as my wife told me to quit laughing and staring with shock.

When Ashleigh got out to the parking lot she was sad and angry. I told her that I wasn’t going to comfort her because it was her own fault for wanting to talk to him despite my warnings. All she needed to do was accept and forgive.

Double Tap


Moonflower-Carlos Santana

When Gracie was formed, the placenta gave her protection against certain diseases due to Ashleigh’s antibodies flowing through her bloodstream. One of the vaccines that Ashleigh despised but had to get during her pregnancy was the flu shot. Although Ashleigh had minor symptoms of the flu, she knew that Gracie would benefit from the antibodies. Today, Gracie still gets antibodies from Ashleigh’s breast milk but access to breast milk will only be temporary. Although her immune system has progressed at an unbelievable pace, she still needs an additional layer of protection from the bacteria and viruses of the world.

How do you know when your daughter becomes a big girl? When the nurse tells you that your daughter is ready for her immunizations. Immunizations are a vital part of society. They prevent widespread epidemics and mean that you are one step closer to discharge.  In order for the immunizations to  proceed, one of the parents must sign off on the paperwork. This would be the first round of Gracie’s immunizations and, although they will be painful to her, it is well worth it. Adults and children alike will have to endure some sort of growing pains; this is a price we all have to pay.

Shots usually occur around the eight week mark. Gracie is already there and we are technically past it. The multiple shots now will be followed by rounds of immunizations. She will be vaccinated for DTAP (diptheria, tetanus and pertusis(whooping-cough))  HIB (heamophilus influenzae type b), ipv (polio, pcv (pneumococcal conjugate vaccine), hepatitis b and rv (rotavius).

 Vaccines are effective because they stimulate the immune system to battle a weakened form of a virus while storing the battle plan in its memory.Recently there was a study that tied vaccinations with autism. For us, these vaccines are the only defense for Gracie from the outside world right now.

The nurses promised us that the shots will be as quick and painless as possible. The technique to quick and painless immunizations is for two nurses to tag team her shots by each grabbing a leg and immunizing at the same time via countdown. Gracie legs are now getting some meat on them. They aren’t quite ready to be called thunder thighs, but they look like little drumsticks. The fattening drumsticks resulted from her feedings being bumped up to 24 mls.

Immunizations never crossed my mind until now. To be honest, they were in the very back of my mind. Most babies receive their immunizations outside in the real world in a doctor’s office of their choosing. Gracie was lucky enough to get it at her temporary home.  Usually, parents get to take their babies home and comfort and spoil them with love and attention if  they are fussy. Our daughter will get love and attention but not all from us. Although she has only one mother, Gracie has a lot surrogates.

Ashleigh was given a warning today that Gracie may have to come home with oxygen and full monitoring equipment.  Some preemie parents beg and  get rejected for this. We, on the other hand, were more than likely the perfect candidates.  Monitors are an insurance policy, but they too can give false alarms and an unnecessary crutch. The crutch could force us to trust it more than our parental instincts.  What would we do if the monitors had to be returned before we could let go?

Filling in Potholes


Alicia Keys- Try Sleeping with a Broken Heart

Ashleigh’s employer announced at 6:20 AM that a snow day was being called due to inclement weather. The weather system that was in place was delivering sleet, hail  and snow. Although school was being called off, Gracie’s daily visit was imperative in spite of any natural disasters. Sheets of ice were covering over everything and anything it touched. The rapidly dropping temperatures weren’t improving road conditions. Ashleigh managed to slowly get to Gracie.

 Gracie’s weight climbed to two pounds and thirteen ounces. We learned today that Gracie more than likely has Patent Foramen Ovale (PFO). PFO is a lasting defect in the wall between the two chambers of the heart. It causes the incomplete closure of the wall after the heart is completely formed. PFO shows up in all human beings prior to birth, then it self heals over time outside the womb. The wall flap refuses to seal itself shut in about 20 percent of all births.

When an individual with PFO heart beats or when they are doing a strenuous activity the flap opens and blood between the left and right atrium mixes. When this occurs, the blood bypasses the lungs. Lungs can sometimes act as  an anticoagulant for small clots. Bypassing the lungs allows small clots or particles to enter the bloodstream which can lodge into the brain causing a stroke or affect vital organs such as heart eyes or kidneys. Out of the 20 percent of the population who have it, less than one percent requires surgery to repair PFO  due to a stroke.

PFO is an abnormality outside of the womb. Most preemies will suffer from this and all you can do is hope for it to self seal.  The wall separating the heart develops normally during a full term pregnancy, but because of the shortened  development schedule, Gracie’s heart wall may not fully heal on its own over time.

This is one of a number of conditions which prematurity brings that is  almost impossible to recover from.Usually a PFO won’t be identified until later in life when the individual suffers from symptoms of stroke or undergoes a stroke.Future symptoms include but are not limited to:  sudden numbness in the face or limbs, particularly on one side, problems with speaking or composing simple sentences, sudden vision distortion in one or both eyes, problems with swallowing, hand and eye coordination issues, loss of consciousness, and/or partial paralysis.

Because of Gracie’s condition and her environment, we were able to get the necessary care through what seemed like daily echocardiagrams of her heart. This allowed the staff to constantly monitor her heart issues. These could potentially lead to future potholes in her life, but by being aware, we will never be completely blindsided by health issues.

Being delivered this news was a lot like receiving second place in an event. No matter how much progress you make, it always seems like it’s never enough. The road ahead just becomes tougher, longer and the grade continues to get steeper. I now completely understand why the  ob/gyn who discovered that Ashleigh was in labor was apologizing over and over again with tears.

PDA was our first heart issue and now this may be the second.  What would our future roles as parents be if we were to limit her exposure to physical sports due to our fears?A parent’s worst nightmare is explaining to their kids how they may not be able to do the same things their normal counterparts can do.  Most people spend their lives being average. Gracie may have to work towards reaching average and then work ten times harder to excel at a higher level. There is no doubt in my mind that she possesses this kind of determination or willpower. However, will I ever be able to comfort her when she comes up short of her personal goals?

A health setback such as this will always force us to think ahead about how we should move forward together as a family when potential health issues arise. Gracie is not even two months old.

A Premature Vision


One Day You Will- Lady Antebellum

December is a traditionally known as a month of gift giving.  The NICU was given a present of a preemie population boom.  As the babies kept arriving, the NICU ward had to make decisions about relocating some of the preemies. Gracie has been the most stable and the star of the ward. Divas such as she need attention from nurses; however, the attention was nonessential to her health. The staff decided to bump Gracie into the “feeders and growers” room!

Being awarded this title was like winning first place in a one person race.  Seeing that Gracie was the  best in the class of the  worst  was mind-boggling and encouraging. She still had the lowest birth weight and was the youngest gestationally.

I remember that I once admired and envied the babies in the feeders and growers section.  Babies were being rocked in the arms of mothers and nurses while some were feeding from a bottle in office and rocking chairs.

Gracie was still a two pounder. The gamble with increasing the feedings to 22 mls every two hours with one hour rest has paid off. Increased dosages of her diuretic allowed her to rid herself of fluid weight. Her true weight exploded to    2 lbs 8 ozs and then 2 lbs 10 ozs. It wasn’t long before we hit 2 lbs 12 ozs. The painstaking goal of three pounds was only four small ounces away.

Receiving the classification of the best of the worst is lot like watching the movie The Bad News Bears. It wasn’t that the status wasn’t acceptable; being the best of the worst would just bring consequences. The ophthalmologist came around and informed the staff and us that Gracie seemed to have retinopathy stage one.  

Retinopathy of Prematurity (ROP) is a condition of premature infants which causes abnormal blood vessel development in the retina. In a normal pregnancy, the retina develops three months after conception and doesn’t complete until birth at full term. Being born prematurely halts or slows the development of the vessels towards the clear gel which fills the back of the eye. These vessels are fragile and weak and can bleed in the eye.

This may cause scar tissues which can pull the retina loose from the inner surface of the eye potentially leading to vision loss.

Typically, all babies younger than thirty weeks gestationally or weighing fewer than three  pounds at birth are screened for the condition. All post term babies should also be screened. Gracie was checked for this condition early on, but her eyes were too premature for the ophthalmologist to check.
 
Other things which can lead to retinopathy include: apnea, heart disease, high co2 levels in blood, infection, low blood acidity, low blood oxygen, respiratory distress, slow heart rate, and transfusions. Gracie had all of these conditions except heart disease and a slow heart rate.

As research continues to make inroads into the field of neonatal care, the retinopathy rates have decreased dramatically. However, because very premature babies have a better chance of survival due to medical science, they are also surviving which leads to an increase occurrence in retinopathy. Science will have to progress to combat this condition as it becomes common again.

There are five stages  of Retinopathy of Prematurity. Stage one is idly abnormal blood vessel growth. Stage two is when blood vessel growth is moderately abnormal. Stage Three is severely abnormal blood vessel growth. Stage four is severely abnormal blood vessel growth with a partially detached retina. Stage V is complete retinal detachment.

Symptoms of severe retinopathy include abnormal eye movements, crossed eyes, severe nearsightedness and white looking pupils.Possible treatment includes cronetherapy (freeze) the creation of future abnormal blood vessels. Laser therapy prevents the blood vessels from growing, but must be done quickly after diagnosis before scaring and detachment.If detachment becomes present then surgery must be performed,  the surgery leads to poor vision.

 
Most preemies recover fully from slight retinopathy. The slight to moderate abnormal blood vessels usually return to normal without treatment. 
Only ten percent of infants with early changes will develop into more severe stages. Severe changes may lead to vision problems or blindness. Complications may include severe nearsightedness and blindness without early detection. 
There is no prevention of ROP other than not having a premature baby.
 
Seeing Gracie with our eyes was a gift. The gift of hindsight and foresight is a gift that few of us possess. Those who have it often ignore or err when using it. Today we felt like our hindsight vision was 20/20. Our foresight became nearsighted due to Gracie’s fluctuating progress. People are not limited by their abilities but by their own vision.

Backfiring


Here We Go Again-Ray Charles and Norah Jones

Working in the NICU is similar to working as a forest firefighter. You contain and control the fire through tactics. Sometimes tactics fail because of conditions.  Backfiring is an indirect tactic in wildland firefighting. It is accomplished by burning the potential fuel of the rapidly spreading fire. It gives firefighters the ability to dictate the battlefield unless unfavorable conditions present themselves.

In this particular NICU ,you will always hear my wife asking questions. If I am there you will see my arms folded, on my hips or over the back of my head to signal me thinking and visualizing what the doctors are explaining. 

Today, we were discussing the possible victory over elevated billirubin levels. Up to this point, the doctors were prescribing Actigall. Actigall (Ursodiol)  is a bile naturally occurring acid used to dissolve gallstones by breaking down cholesterol. The doctors decided to follow through with taking her off Actigall.

They increased her diuretic to assist in flushing her system out. Gracie is still at 2 pounds 10 ozs and has been for a long time. Although, Gracie’s isolette’s heater is on and regulated, Gracie remains cold to the touch even when we take her temperature under her armpit.  

The hypothesis behind her stagnant weight is that babies, especially preeemies, are extremely inefficient at maintaining a stable core body temperature. Energy in the NICU is measured in calories. The more calories a baby uses in producing and maintaining heat leads to the less fat they are able to store in their bodies.  

Gracie was freezing , and I was beginning to notice that she always had cold hands. A friend once told me that a person with cold hands always has a warm heart. I hope this remains true with Gracie. The way I warm Gracie’s hand is by offering her my index finger and curling it so my thumb sits on top of her hand to warm the top while my finger warms the palm area. If the thermometer says she really cold, I will place one palm over her head and I will push her legs up to her chest and use my other palm as a blanket. Since she hates to be restrained I usually apply firm pressure to resist her kicks.

The triplet neighbor was at 2 lbs 5 ozs and still couldn’t get over her hump. She was five weeks gestationally older but weaker than Gracie. Although the statistics show that every week a baby is born later gestationally it leads to a better quality of life. Babies born before twenty-five weeks only have a twenty percent chance of living their lives with no side effects from their prematurity. Gracie’s neighbor seems like the exception to the rule. The triplet is still on two forms of  mechanical ventilation and one of them is damaging her lungs because it causes lung scarring. The two systems have to work in unison to provide oxygen to the triplet. I realized that this preemie received much more support than Gracie did in her first month. As a parent you hope that the statistics and studies work in your favor. When you fall into the unfavorable category self blame sets in like a bad virus.

Staff members usually take the path of least resistance during treatment. At times, they will abolish this philosophy when a life is in jeopardy. This is  because they have much more faith in the human spirit and body than I will ever possess, especially in babies.

While we were there, it seemed like the apnea episodes were wanting to make a comeback like New Kids on the Block.  Apnea episodes are defined by instances in which her breath and heart rate levels drop and she has to be physically stimulated to breathe via human touch through stroking or patting. A paper sheet hangs on the front of her isolette for the nurses to record her stats during each of her apnea episodes. It stood as a constant reminder that breathing is an action we take for granted.

The solution for apnea is to administer liquid caffeine directed at her central nervous system.  Although the caffeine is administered in a short time frame you wonder what kind of long-term effects this will have on her in the future. You wonder what kind of residual effects the medicinal cocktails will leave behind as she grows older.

Although we are experiencing a slight turn of luck with Gracie’s improving condition it remains a delicate equation to balance. Would it be selfish of me to wish for Gracie to be part of the twenty percent for Christmas?

A Posse


American Honey-Lady Antebellum

The same friend who brought us dinner when Ashleigh was discharged wanted a follow-up visit with her daughter and husband. She has been keeping up with the blog and Gracie’s progress. As some snow fell outside, meteorologists were expecting an even larger snowstorm.  She called us from the road to tell us that she was running a little late due to a pit stop at Babies R Us. We have been there multiple times but we have only stopped by for essentials because very few items fit Gracie.  At times it felt like we were putting a bumper bra onto a micro machine. 

 Once they arrived, they called for directions to the NICU.   I gave them a general whereabout and told them that I would wait for them in the skywalk. The mother, father and daughter turned the corner and they looked  like a posse approaching me.  I immediately thought to myself, “So, this is what we are going to look like as a family when we are out in public:  rattles, wipes, blankets, diaper bag, wife and husband in tow.”. 

I greeted them and walked them to the NICU. I called in and asked them to open the door. When the door was released, I gave them both directions on how to scrub carefully from fingertips to elbows for three minutes in hot water and directions to Gracie’s room.

Since Gracie had visitors, she needed a special outfit. Gracie wore a  pink bow and vest from the boutique for her big company debut. This is the first time Gracie had visitors, other than family, after all of her progress. The friend’s husband  wanted badly for Gracie to open up her eyes  and made a joke  about our last name. The room responded with alarms chirping in the silence. He was an audience of one.

Meanwhile, I was outside entertaining their daughter in front of  NICU in the skywalk waiting area. We spent some time playing with  toys, and I took her out to hold her. I tried entertaining her through a self manifested dance and faces, but that made her cry. I eventually resorted to pushing the stroller around the wing. When all else fails, the secret weapon to a crying and antsy child is the stroller.   The husband came out on the wife’s orders to check on me and told me I had a beautiful daughter. I thanked him and gave him a breakdown of what I did with the mellow child. 

 What I mean by mellow is that she isn’t whiney or needy. She loves everyone and  has a calm attitude about everything with the exception of my dancing and facemaking. She loves to be held and talked to, both of which I did while I was chilling with her. He told me that the daughter and mother were much alike because they became aggravated and antsy when they were in one place for a long time. 

Four months ago, their mellow daughter was born at full term at six pounds. At the time of her birth we were astonished by her small size.  Picking up and handling a normal baby and Gracie was like handling a cantaloupe vs a kiwi in the produce section.  

I went back into the NICU and greeted the friend; she brought Gracie a present from her daughter. It was a one  book collection of Dr. Seuss  books with an inscription. I love classic meaningful books inscribed with a personal thought. It is something an e-reader can never duplicate.  The friend spent some more time with us by discussing her family and future exercise plan. She was not looking forward to the exercise plan, and I didn’t blame her.

Gracie is so lucky to already have drool, spit bubbles and diaper buddies, even before she knows it.  Her story was just beginning.