Week 13 - The End of the Begining - Summer Comes Home!!

In the Car Seat Heading Home

Family and Friends, today is 5 February 2014. Tomorrow Summer turns Sweet Sixteen.  Today's entry concludes her 13 week stay in the NICU and her triumphant return home to begin her life. We brought her home on 4 May 1998, at 4 1/2 lbs, 21 days prior to her actual delivery date.  Think about that...forget about trimesters, weeks, and months, Summer was born 108 days early. Medical knowledge and technology have advanced to incredible levels...but none of it is possible without your prayers and God's guiding hand in our lives.  Thank you all for tuning it.  I'll probably post a few more pictures and maybe a few video's to the blog...since it's now here to stay...but this completes the material I posted 16 years ago.

Day 85 - Saturday 2 May 1998

Moms been running around like a chicken with her head cut off.  We know Summer’s coming home on Monday.  Mom has been feathering the nest for well over 3 months now but still there are things that are not quite right.  In addition, mom will have a baby shower tomorrow but insists on continuing to buy things.  Her rationale is that we will need certain things and we can’t rely on having them given to us.  Not when Summer is coming home on Monday.  Family member arrive in town to also attend the shower tomorrow.  There is a sense of excitement in the air.  Dad’s stress level is really high but it has more to do with finishing his term project and taking his final exam next week then it does with Summer’s arrival.  From Dad’s perspective we are ready to go.  Dad is taking the entire week off so he knows he can get some of his project and studying done during the week.  Mom and Mom’s mom visit Summer and grandmom gets to hold Summer for the first time.  Dad swings by the NICU to pick up mom to head to a Run for the Roses party hosted by some Air Force customers.  Mom and Dad place a bet on Victory Gallop and win a part of the pool.  Their take is $17.  Not bad.  They also try drinking Mint Juleps for the first time.  Not good.  We are not bourbon drinkers.

Day 86- Sunday 3 May 1998

One day to go.  Mom is so excited she can’t contain her self.  She heads off to the baby shower.  Dad gives his sister explicit instructions on how to shoot video of the shower.  Dad does some light work around the yard and house to make sure everything is ready.  After the shower they call the NICU to check on Summer.  The NICU is not accepting phone calls and no visitors are permitted in.  It seems a premature pair of twins were born late in the afternoon and they are in critical condition.  Our hearts and prayers go out to the parents.  It is so sad that on the day before we bring Summer home that their isn’t complete jubilation and in the world which prompts a day of world peace. Life must continue.   Dr. Z is on duty in the NICU so we know the new babies are in the best hands.  We do not visit Summer on Sunday and are told that Summer will be discharged from the Hospital.  When mom gets home from her shower dad views the video.  He recognizes one shower attendee stealing the lime light.   Mom also brings home some champagne from the shower.  Dad says - “Don’t mind if I do”.  Dad doesn’t even like champagne but manages to finish off almost the entire bottle (bid bottle).  In hind sight his stress was really showing.  So on the night before Summer’s homecoming Dad spends the night on the bathroom floor yawning in technicolor.  It’s been years since I’ve been there but it’s good to get back once in a while.  It gives you perspective.

Day 87 - Monday 4 May 1998

After 87 days in the Neonatal Intensive Care Unit it’s time for Summer to come home.  Everything is ready we just need to drive up to the NICU, sign some papers and take her home. Summer comes home today.  This is the most exciting day of our lives.  Some how Dad manages to sneak in a staff meeting.

We leave for the hospital at 11:30 AM.  When we get to the NICU Dr. G is on duty and will be discharging Summer.  Dr. Z is there as well.  Dr. Z has been up all night taking care of the new twins that entered the NICU under critical circumstances last evening.  Dr. Z is still a wonder in our eyes.  We say good bye to Dr.  Z. and thank her for being there for Summer.

Dr. G comes into the waiting room to talk to us about what to expect at home.  We know Dr. G is also in love with our child and will miss her.  We thank Dr. G for all she has done.

Sharyl comes in and talks to us about the discharge.  We are presented with our exit interview to make sure we learned all of the care we will need to know with Summer and will be comfortable taking care of her.  Sharyl also brings in a present for Summer.  Later we find out that it is a colorful summer beach hat with dolphins.  It’s nice to know Sharyl thinks of Summer in such bright and colorful ways.  

After all the paperwork is signed we begin to pack up all of Summer’s belongings.  Sharyl will accompany us to our car.  Just before departure its one more trip around the NICU to say goodbye to whatever staff is on hand.  Its a happy yet sad affair.  The staff at the NICU has become like our family.  Each member serving some role.  We know their personalities, we know their back grounds, we know why they are there doing what they do - around the clock, seven days a week.  It has been the experience of a life time and we have enjoyed knowing each and every one.  If I ever finish this web page it will be dedicated to them.

Sharyl packs up Summer and will accompany us down stairs to our car.  In the lobby we say goodbye to Sharyl but know Lisa will be in close touch with her during the next several weeks.  Summer is discharged weighing it at 4 lbs 14 ozs.

The drive home is amazing.  Dad can’t believe how thin the lanes are and how fast everyone is driving.  It’s like he entered the twilight zone.  There are maniacs all over the road.  His senses are on overload.  Every car is a threat.  Every ordinary driving decision becomes a deliberate act. A struggle between life and death.   It’s no way to drive and ironically probably more unsafe for the baby in the car he is trying to protect.  He recognizes that it is an emotional reaction to the great love he has for the precious cargo he is responsible for in the back seat.  Either that or he is still drunk from the night before.  Mom sits in the back seat and stares down at our precious cargo hoping Dad won’t pile it in on the way home.

We pull up into the driveway for the first time.  Summer is at home.  She looks out the window and says, “Daddy, why haven’t you mowed the grass?”  Our neighbor and hired artist Jessica catches us getting out of the car and comes over to steal a first glimpse of Summer.  She is surprised at what she sees.  A beautiful baby girl that looks like a baby.  Knowing Jessica,  she went back home a had a good cry.  It was a wonderful moment.

And now the moment of truth.  The front door swings wide and there just beyond the threshold stands Sheena the black panther, svelte as the puma, cunning like the fox, black as the ace of spades, balding just a little in front of her ears, and looking as if she has taken one to many leaps off the high window sill and landed on her head.  That’s our Sheena.  She noses up to the car carrier, takes a sniff, and then frantically flees the scene.  She will spend the rest of the day prowling outside the house.

We placed Summer in a specially prepared bassinet in our bed room.  Dad shoots pictures and video of the occasion.  Summer is home.  Now the telephone calls start and the rest of our lives begin.

Day 88 - Tuesday 4 May 1998

Monday melds straight into Tuesday.  We didn’t get much sleep last night.  Summer is up every 2 ½ hours to eat.  And while she is asleep she makes little squeaking noises.  Every five minutes we are looking at her to make sure she is all right.  Of course she is but our imaginations run wild.  All day Tuesday its much of the same, little sleep and constant checking.  The phone calls keep coming and we get the word out that Summer is home.  Mom and Dad take turns with the feedings and the diaper changes.  The monitor goes off once on Tuesday.  Her respiration was slow but she corrected herself within 3 seconds.  The monitor remains silent the rest of the day.  Dad takes time to drop of the notification of a premie at home and on monitor to the rescue squad.  They schedule a time to come visit with Summer on Thursday.  Just to show us their equipment and to fully understand what they are up against.  Sheena is adjusting well.  She will walk up and examine Summer but no hissing.  She just walks off disinterested.  Its a good sign.

Day 89 - Wednesday 5 May 1998

Tuesday melds straight into Wednesday.  Again, very little sleep for us.  Summer still squeaks and cries out whether she is sleeping or not about every four minutes.  It’s nerve racking.  When one of us is on duty we send the other one down stairs to sleep.  That arrangement is working nicely.  Today the home nurse came by to check on us and to make sure we were doing everything properly and didn’t have any questions.  While she was there she watched Mom give Summer her first bath at home.  Summer loved the bath.  She loves the warm water on her body.  Summer weighs in at 5 lbs and 1 oz.  Dad is called into meetings that he must attend.  He isn’t very happy about it but he hopes it will eventually spawn business.

Day 90 - Thursday 6 May 1998

The rescue squad visits today.  When Dad sees them heading up the walk to the house next store he is glad they scheduled a visit.  This team is very professional.  Their equipment is amazing.  They show Mom and Dad their state of the art rescue kit based on a childs size.  They first lay out a measuring strip to measure a babies length.  The measuring strip is color coded based on length.   These colors direct the paramedics to a color coded pouch that contains all of the right size medical equipment to work on a child of this size.  It is work of genius or hard learned experience.  Either way it is a comfort to know that the paramedics have their act together.  The color coding also directs the technicians to the proper equipment to insert an ET tube if necessary.  Also on the color coded strip are the correct doses of any medication that the paramedics might have to administer.  Again it is a very professional set up.  While they were with us they got the call just like on Emergency.   Heart attack at the nursing home.  Just as quickly as they came, they departed our living room.  We enjoyed meeting them but hope the next time we see them is at their annual fund raiser.

Day 91 - Friday 7 May 1998

Summer visits the pediatrician for the first time today.  It’s also our first car trip since we brought her home.  Dad still feels weird behind the wheel.  It probably wasn’t the alcohol after all.  Mom thinks he is too stressed out and needs to take a chill pill.  We get to the doctor and are shuttled right back to a private waiting room, Mom is very happy.  They don’t want the small babies who are not sick waiting with the sick children.  Dad never thought of this.  Dad would be sitting next to some snot nose, coughing, and hacking kid letting him touch Summer if it wasn’t for these smart people.  They take Summer back for a heel stick.  We can hear her screaming as if they are torturing her in the next room.  Mom is dismayed to say the least.  They bring her back in for Mom to hold until the Doc shows up.  Dr. B shows up and takes all 20 pages of Summer’s discharge papers back to her office to read.  It will take her 20 minutes to get through it all before she returns.  She gives Summer an exam and is very please with how she is performing.  Summer is now officially 5 lbs 3 ozs.  Everything is going well and it looks as if her parents can actually take care of her.  On the way out of the Docs office we meet up with a 26 week premie who was now 18 months old.  The future awaits us as we stare into the eyes of this beautiful, alert, and fully functional child.  As our oddessy draws to a close I am reminded of these words:

“This is not the end.  Or the beginning of the end.  It is the end of the beginning”

 Let’s get started.  

Thanks for following Summer’s story.  We will see you all soon.

Week 12 - Almost Ready to Fly

After three months in the NICU we knew our precious would be coming home soon.  The anticipation was incredible.  

Here is a summary of the second to the last week in captivity.

Day 78 - Saturday 25 April 1998

To celebrate the soon to be release of Summer from the NICU, mom and dad went to the Fun Factory to see Comedy Sports, a dinner/comedy club that specializes in improvisational competition.  It was fun.  Summer is doing great.  She accomplished all of her goals set for the previous week and mom and dad are happy.  The medical staff tells us we should do a few fun things together this week because Summer will be coming home soon and we want get the chance to do anything alone together for quite awhile.  Based on our schedules I’m not quite sure what we can squeeze in but hopefully we will think of something. 

Day 79- Sunday 26 1998

DC United Game today - mom decided not to go so dad stayed home and watched it on TV. Summer is doing so well she is annoying all the nurses.  Now when she is awake, she is so alert she demands to be entertained.  Its a good sign and indicates that we will be taking her home soon.  Lynette was entertaining Summer by sitting her up right in a baby seat and hanging her toys down in front of her.  I wish we had a picture.  Lynette is afraid Summer only likes her primary nurses and her mom.  We assured her this wasn’t the case.  Lynette also felt bad because no one told her Summer likes the Enfamil nipples over the Simulac nipples.  Tonight dad watch the first part of Merlin and taped it for Summer to see one day.

Day 80- Monday 27 April 1998

Today we set the date for Summer to come home.  Next Monday, 11 May, they are planning to discharge her.  What great news!  Summer will have spent 3 full months - almost 90 days and will be 37 weeks gestational age when she leaves.  It’s hard to believe the time has ticked by.  Three months ago it seemed that waiting three months would be a life time.  Looking back it seems to have flown.  I think the fear of the unknown is what made looking ahead three months almost unbearable.  Now that we will have Summer with our entire life looming before us it seems to short.  Summer will be leaving for college soon and I hardly know her.  Talk about fundamental changes in priorities.  This has been the experience of a life time.  And I glad I am getting to share it with so many loving friends and family members.  Dad taped the second half of Merlin and found out later that Summer was actually already watching it on TV in the nurses lounge.

Day 81- Tuesday 28 April 1998

Today was a big day.  Summer went down stairs to get her MRI done.  Mom was watching and got to see her brain.  Mom and Dad went to two hours of CPR training and learned how to use the home monitor. And it was Ahn’s last day in the NICU.  She is moving to another State. The nurses threw a little party for Ahn at the end of her shift.  Dad was up in the NICU trying to complete his interviews so he was invited the chocolate cake and vanilla ice cream was great.  He sat in the nurses lounge and got to see pictures of all of the nurses children hanging on their lockers.  Dr. Z told stories.  It was fun.  When it was time to go I made sure Ahn would take a picture of herself holding Summer (Alison would take the picture).  We still don’t know if she since we haven’t developed the film yet.  I tried to hung Ahn but she is so shy she just doesn’t respond well to that sort of thing.  Ahn will be a fond memory of the NICU and I hope Summer will get to meet her one day.

Day 82- Wednesday 29 April 1998

Summer is now 4 ½ pounds.  Tonight Dad and Mom went to see the play “Mouse Trap” put on by the Little Alexandria Theater.  Red Haired Cathy, one of Summer’s nurses plays the leading role.  Cathy got  us the tickets and they were waiting for us at Will Call.  Front Row Center.  It was a great production.  We will have to go again soon.  Summer is doing well today.  She has been weaned from all of her medications except caffine.  Mom said she ate well today and is putting on the weight.  Also, tonight was a DC United Game.  Dad gave his front row tickets to Dr. Z.  Dr. Z loves soccer.  I hope she enjoyed the match.

Day 83 - Thursday 30 April 1998

Excitement is building.  Today Summer’s oxygen saturation sensor was removed.  Now she is only hooked up to the heart and respiration monitor.  The same monitors she will come home on.  Mom spent most of the day with Summer.  She was even unhooked from the monitor for a time as mom carried her around the NICU visiting some of the nurses.  Dad showed up for Summer’s 5:30 feeding.  She ate 45 cc of milk in under 20 minutes without a fight.  Dad burped her and got three big ones out of her.  Dad interviewed Red Haired Cathy - the Actress - and learned why she got to kiss the leading actor 10 times during the course of the Play.  That’s 10 times a night, 6 nights a week, for four weeks, plus the same in rehearsal.  That’s close to 500 kisses in a 3 month period - that’s far more than most married couples.   He also learned about all of the back stage gossip.  Summer is glad to have a talented actress as a nurse.  We also found out today that Summer will have blood test to evaluate her red blood cell count.  If it is too low it may require another transfusion.  If Summer receives a transfusion it will delay her coming home next Monday.  Dad got home in time to watch Seinfeld - the third from final episode.

Day 84 - Friday 1 May 1998

Today was another training day for mom.  She showed up at the NICU at 10am.  She checked into the parents suite and Summer was rolled in.  The object of today was for mom to take complete care of Summer without the aid of the medical staff and to get used to the home monitor.  Mom completely wired Summer with the Heart rate monitor and the Breathing monitor.  When everything was working properly she settled down to spend the day with Summer.  Dad had meeting all day long and finally showed up at the NICU around 5pm.  We had Summer for the full 12 hour day so we still had 5 hours to go.  When dad showed up the monitor had not sounded once for Summer.  She was having an excellent day.  Mom was excited about her progress.  During the day mom learned about Summer’s medication and how to give it.  It seems that Summer will only require a few miligrams of Caffine each day when she is home.  Caffine is a wonder drug - one of Dad’s favorites.  Dad let mom go home early and he finished out the full 12 hour day with Summer.  Then the nurses took over again.  Dad also conducted some of the final interviews with the medical staff.  See Doctors and Nurses.

NICU Doctors, Nurses, and Therapists

The doctors, nurses, and therapists who practice in neonatal care are an amazing group of people.  Whereas we see plenty of skilled medical care represented on TV we rarely see the events and the live or death teams working in a NICU.  We can’t say enough about these people.  They have taken Summer from the jaws of death and given them both back to us all.  Each doctor and nurse is full of love and they are all amazing people in an amazing profession.  We dedicate this page to knowing these people so we can remember them when Summer wants to know where she came from.

Ahn

Anh, pronounced very much like On with an A, is one of Summer’s primary nurses.  Anh loves her job as a neonatal nurse.  She has been taking care of little babies for over ten years. From the moment Anh first took care of Summer she fought with other nurses so that she would be one of the primary care givers.  Anh would tell us that other nurses were fighting over Summer.  Only later did we find out it was Anh who was doing most of the fighting.  From the beginning Anh’s care for Summer stood out.  Not that the other nurses were not providing exceptional care, Anh would do little things that just seemed above and beyond the norm. Whenever we would come to visit and Anh was on duty, she would have little Summer’s feet propped up on a rubber glove filled with warm water to improve the circulation in Summer’s tiny feet.  Other nurses would warm her feet with a moist warm towel, but Anh approach went that tiny bit extra, and we could tell Summer liked it.  Summer is always supported on all sides and cuddled and snuggled with blankets when Anh is working.   Anh also cares a great deal about us.    On Valentines day Anh put together the Valentine you can see on this web site.  We framed the Valentine and will keep it forever.  Anh always looks forward to our visits and seems disappointed if we fail to show up on her shift.  We recognize this and love her for it.  Anh takes pictures of Summer if she sees a smile or a grin she thinks we will like. Anh was not on duty when Summer opened her eyes for the first time.  She was disappointed but later she shot the first and best picture of Summer with her eyes open.  You can view this picture on the pics page.  The best thing I can say about Anh is that she calls the hospital on her days off to check on Summer - that says it all by itself.

Anh. graduated from the Tennessee Technological University Nursing School.  Her favorite food is Tai, her favorite movie is Casablanca, and her favorite book is “Don’t Sweat the Small Stuff, and It’s All Small Stuff”.  She is married and has a 2-1/2 year old daughter of her own. We hope Summer will get to meet Anh’s baby girl in a few years.  Her hobbies are snow skiing and tennis.  When she comes to work she is always wearing green scrubs, a white turtle neck, and white running shoes.  She loves her job because she loves to touch babies and to watch them  grow.  She loves taking care of Summer because Summer is such a feisty fighter.  She has cared  for many 24 week old babies in her career, But she says she will always remember Summer.

I asked her if I could take her picture for this web site.  She told me no because she would feel vain having her picture taken for her own dedication.  She would let me take a picture of her holding Summer when Summer is big enough.  We sure hope so because we want Summer to always remember Anh.

Debbie

Debbie, or more correctly, short haired Debbie, is one of Summer’s alternate nurses.  We mainly see her on the weekends.  Debbie went to nursing school at the University of Virginia and has been taking care of little ones for over twenty years.  She is married to a Doctor we assume looks like George Cloony although we have never met him.  Together with George they have a beautiful 19 month old baby girl named Sarah.  Debbie loves to read, garden, and quilt.  She and her husband are also avid Scuba divers and have vacationed at our favorite location - Belize, CA.  The most  rewarding aspect of being a neo-natal nurse for Debbie is seeing a critical baby recover and become 100%.  She also enjoys watching a family grow together as their newborn grows.  Maybe we will see Debbie and her husband off the coast of San Pedro about 100 feet down kicking along some canyon walls or perhaps feeding the nurse sharks in Shark-Ray  Alley.  

Linda

Linda is a nurse with a bunch of neonatal experience.  She has been at Alexandria Hospital for 8 years and that she graduated from Kent State University in Ohio.  Linda has an extremely professional demeanor.  She was the first nurse to begin to tell us everything we should expect over the long course we were about to embark on.  So far she has been extremely accurate.  Aside from taking care of the babies themselves, Linda loves taking care of the families.  She feels that watching the families grow with the baby and to become more comfortable with their responsibilities so when the baby is ready to go home they can do so much easier is a big part of her responsibility.  Linda knows it hard not to take the stress of the job home with her so she engages in hobbies such as crafts.  Currently she is building a doll house.  Linda looks forward to the NICU reunions that are held about every two years.  All the families and babies  that served time in the NICU are invited.  We will look forward to these reunions as well.

Norine

Norine likes to take care of babies.  If we have kids, we only get to take care of them as new born babies for a few months of our life.  She gets to take care of them at this early stage of their lives continuously - and she loves it.  Norine graduated from the Columbia Hospital School of Nursing in Pittsburg and has been in pediatrics, ER, ICU, or neonatal nursing for 23 years - 15 dedicated to the neonatal side of things.  She has been at Alexandria Hospital for over 11 years and believes it to be the friendliest place to work.  When she interviewed for the job she knew immediately that she wanted to be there.  She started off things by working at the Jackson Memorial Hospital at the University of Miami where she knew a doctor who later became the president of Pediatrix (the medical group the neonatologists work for).  She is married and has three boys. She keeps in shape by walking and weightlifting and looks forward to the day when her and her husband can compete at Ball Room Dancing.  She is an avid reader and loves Michael Crighton - although since she doesn’t watch TV she’s not able to enjoy his work on ER. Of all the nurses, Norine is the most stylish in the NICU.  She wears custom scrubs.  Either multicolor or scrub dresses.  She hardly ever wears the same out - and never two days in a row.

Alison

Alison is the baby of the NICU.  She graduated from Northern Virginia School of Nursing less than a year ago.  After attending Colby College in Maine and Mary Washington here in Virginia, and majoring in English she decided moving into heath care was her calling.  After getting accepted into the NOVA program she began volunteering at Alexandria Hospital.  Later she landed a part time job working as an administrator in the NICU.  From there her love of  little babies and the course for this part of her life was charted.  She would become a Neonatal Nurse.  Typically, neo-natal nurses are not accepted straight after graduation. But since she was so familiar with the NICU Sharyl  (One of Summer’s primary nurses) picked her up as a protégé and carried her under her wing for several months.  Sharyl has done a fine job.  Alison may seem young but we never noticed a lack of experience.  One oddity about Alison is that she was born and raised in Massachucetts but yet has absolutely no accent - she says she worked very hard to put the r’s back into her speach.  She sounds like she is from the mid-west.  She is married and enjoys fixing up her new house with her husband.  Alison wears a stylish plaid scrub jacket that her husband bought her for Christmas.  She believes that although the hospital in general, and an intensive care unit specifically, may seem like a bad place, she finds the NICU to be a very positive place.  Full of life and hope.  Alison’s attitude certainly helps add to this positive nature. 

Danny

Danny is a respiratory therapist.  One of several who work in the NICU.  There are about 8 at the Hospital but only 4 or so are qualified to work the NICU.  Danny graduated from the NOVA program about 15 years ago and loves his job.  He loves being apart of a babies respiratory therapy because of all the treatments that go on, a babies lungs have the greatest impact on the babies condition.  You can watch a babies condition go from critical to stable very quickly based on the medication, equipment, and therapy he has been trained to provide and assist the doctors and nurses in providing.  Respiratory therapists in general have responsibility for adjusting the respirators, performing the regular blood gas tests, and administering the lung medication.  You can count on Danny or another therapist visiting with Summer about every four hours. Danny is married and has two kid, 3 and 6.  His hobby is golf when he can find the time.

Jeanne

Jeanne is from the Mid West.  She went to nursing school in De Moines Iowa at an area community college. Being married to an officer in the Air Force she has moved around a lot during her career.  She started her nursing career in Apple Valley, CA at Saint Mary’s Hospital in Pediatric Nursing then moved to Concord MA staying involved with Pediatrics.  Her next move would take her to Colorado Springs where she would become a Neonatal Nurse at the Pemrose NICU.  From there it was off to Minneapolis MN where she worked in the North Memorial NICU followed by a move to San Antonio, TX where she worked in the Baptist Hospital Nursery taking a break from the NICU life.  Finally she arrived at the Alexandria NICU when her husband was transferred to the Pentagon and has been her for three years.  She has two cats (Miss Kim and Rag Doll) and two children.  Her hobbies include reading, gardening, snow skiing and carting her children to and from athletic events.  She is attracted to the NICU because she loves babies and the miracle they represent - if it wasn’t for the baby fix she gets when she is in the NICU she would have 10 children of her own.

Julianne

Julianne was raised in up state New York but went to the University of South Florida and began her nursing career in St. Petersburg, FL.  After working in almost every kind of nursing field for almost 10 years she decided that nursing wasn’t for her and that she would get out of the business.  Then a friend of hers talked her into giving neo natal nursing a try.  She started at Tampa General Hospital and loved it.  Of all the nursing she has done she feels the most sense of accomplishment in the NICU.  She feels that it is here that she can do the most good.  After 10 years she had burned out as a nurse but the significant contributions she could make in the NICU revived her.  She felt that something good is going to come out of work - and it certainly has.  Again and again I imagine.  After working as a traveling nurse for a short few months she landed at Holy Cross in their NICU where she would work for 12 month.  In 1995 she checked in at Alexandria and has been there ever since.  She enjoys running, horses, and reading and in a strange twist of fate delivered her own baby girl at 31 weeks.  She has first hand knowledge of having a baby in the NICU.

Marlena

Marlena was Summer’s first nurse.  She was on duty and in the delivery room on 6 Feb 1998 at 9:26 pm.  She will always remember Summer for the way she arrived in this world.  Marlena is from Peru.  She attended  the University of Chiclayo and began neo natal nursing in Venez, Peru.  She has been in the US for 18 years.  She is an avid world traveler and has been to the Caribbean, Bermuda, Spain, England, Greece, France, Italy, Equacdor, Venezuela, Costa Rica, Mexico, Morocco, and Portugal - that gives her 5 of 7 continents.  She enjoys reading and talks to Norine about the books she reads (Scary)  Her favorite book is The Conquerors, favorite movie is Gone with the Wind, and favorite cuisine is spicy food from Morocco.  She loves the small hospital and family oriented feel of the Alexandria NICU.  She likes how the unit works as a team to take care of both the babies and the families.  She feels an incredible emotional pull involved in the fight for life and death.  More than most she attaches to the babies and feels the emptiness when they leave the NICU.  Her best reward is when the babies she has cared for come back to visit.  Summer will always belong to Marlena.  

Dr. Z

It will be hard for words to describe Dr. Z.  That is probably why it has taken me such a long time to sit down to write her profile. Since Dr. Z was on duty the night Summer was born, we credit her with saving Summer’s life.  Is Dr. Z an angel or just an outstanding medical professional on duty the night of Summer’s birth?  Let’s start at the beginning and lead up to that fateful night that brought Dr. Z. into the emergency room and Summer to us.

Dr. Z. is from Chile.  Had she not gotten into the medical profession she would have been a ballerina, a gymnast, or a truck driver.  This is an interesting combination and although she is built more like a gymnast, we are glad she is a doctor.  She grew up eating various shell fish from South America and different parts of a pig (kidneys and feet).  Being from SA soccer was obviously the sport of choice, and her knowledge of world soccer puts mine to shame.  She was quick with tips for my soccer playing ability and also helped me learn a couple of soccer phrases in Spanish so that I can communicate better on the pitch with some of my Salvadorian soccer friends.  Although she does not think much of women’s soccer,  her gymnast build would have certainly translated well into this beautiful sport.

Dr. Z attended  the internationally renown University of Concepcion, as well as the University of Chile in Santiago to become a doctor.  While studing with a fellowship in neurology her husband (an economist) was transferred to Paraguay in 1969.  She followed him and because her medical license did not transfer she began volunteer work in pediatrics.  During the early 70’s there was great civil unrest in Chile.  A socialist and communist led party was elected in 1970.  What followed were several years of economic hardship followed by the military overthrow of the Chilean government in 1973.   Fortunately for Dr. Z, she was in Paraguay during the revolt which cost the lives of many of the classmates she graduated college with. 

In 1974 Dr. Z came to the United States with her husband.  Unable to take the medical qualifying exam to transfer her medical credentials because she could not speak English, she began to learn the language.  In 1980 she took the medical exam and passed.  Despite studying English in several programs, she credits a Metro Bus Driver with really teaching her how to speak English.  She started a residency program at Howard University and obtained her state license in 1983.  She immediately went into private practice with another Chilean from 1985 - 1988.  She hated private practice and began moonlighting as a neonatoligist.  Although most neonatologists must complete a fellowship in neonatology, she learned on the job.  In 1991 she signed on with the medical group Pediatrix.  They selected her because of the respect she gained as a moon lighting neonatologist.  She never looked back.  Neonatology is her life.  And from what we can see, she is one of the best in the business.   The life and death business she is in creates an excitement and a sense of clarity for her that defies explanation.  When she walks into a traumatic delivery, such as Summer’s, a baby born with an APGAR of 0, no respiration, no heart beat, no muscle response, and blue skin, it scares her to death.  With the arriving adrenaline surge comes total clarity.  Depending on the circumstances she knows just what to do.  Typically you get about one shot with the endo-tracea tube.  Dr. Z can insert it in one move.  The next move is the injection of epinepherin to start the babies heart.  Seconds mean the difference between a health baby and a baby that will experience many problems in their life, or worse.  Nurses in the NICU have told me the Doctor you want in the delivery room with you is Dr. Z.  I believe them.  Within minutes of Summer’s delivery I was in the NICU watching Dr. Z. work, as she threaded the umbilical arteries with a tube (threading a thread with a thread).  It was amazing to watch.  I was overcome with confidence that this medical team knew exactly what they were doing and somehow I knew Summer would be OK.  Dr. Z explained it to me as she worked and as I watched.  Those early visions of the NICU looking at Summer and watching Dr. Z work will be memories I will carry forever.  In the morning as Dr. Z was departing for her shift change I hugged her and told her she saved Summer’s life.  Although I thought I was hugging her, I now suspect, she was hugging me.   Summer will know about Dr. Z as she grows.

Aside from watching soccer, Dr. Z has a few more hobbies.  Although she would have you believe that she is still raising her two baby boys, later we would find out these baby boys are grown adults ready to graduate from college.  Dr. Z plays guitar, she likes to run and walk to stay in shape, and she likes knitting and embroidery.  In fact she is already knitting a blanket for Summer.  Her favorite movies are spagetti westerns with Clint Eastwood and her favorite book, which she reads often, is the Bible.

The other doctors in the NICU are smart, compassionate, professionals who we will always remember were there to care for Summer.  Dr. Z however  falls into the small list of magical people that show up in your life and change it forever.  God put her here on earth so that on Feb 6, 1998 at 9:26 pm, when Summer was born, at 9:27 pm God could give her life through Dr. Z’s hands.   Medical Doctor or Angel?  You decide, we already have.

Sharyl

We call her Sharyl although she is the only nurse in the NICU to answer the phone with her last name. “NICU, Mrs. W.” she said to me almost every morning for 87 days.  Then she would immediately launch into her morning update as if she instinctively knew that parents, although trying to be polite, are only interested in what she has to say next.  And Mrs. W. never let me down.  Her next words were, “Your daughter had a good evening”, signifying immediately that everything was all right.  Maybe I didn’t hear anything past those words, and maybe I didn’t care, but those were the words I would pass to Lisa, who refused to call in the morning because she was too scared.

Sharyl was another one of Summer’s primary nurses.  She typically worked the day shift from 7am to 3 pm.  Ahn would replace her at 3 pm, followed by Debbie at 11 pm.  Since  Sharyl was there during the day, Lisa would spend most of her time learning about premie care from Sharyl.  Sharyl serves as a mentor for younger nurses and a stellar professional for anxious parents.  Allison, the youngest on the nursing staff, is not lacking in skill and experience, due in no small part, to Sharyl’s training.  I am glad, it was Sharyl who trained Lisa, and now that Summer is home, it is Sharyl who Lisa calls on for questions.  

Sharyl has been a nurse for twenty years.  Having attended the South Dakota Nursing College, she worked in Pedatric ICU for a 6 years before beginning work as a neonatal nurse 14 years ago at Alexandria.    Her interest in neonatology grew out of her experience in the Ped ICU and her technical knowledge of neonatology  no doubt rivals that of most Doctors in the profession.  Since she never once questioned a doctors prognosis or treatment,  we feel that may be as a direct result of her influence on the doctors treatment in the first place.   We were never there to witness it, but we feel certain her influence on the doctors weighed heavily into Summer’s treatment.  We view this as an extremely positive thing.  

Sharyl’s hobbies include walking, biking, hiking, and canoeing and because she specifically stated that she doesn’t scuba dive, we suspect that she would really like to learn.  Sharyl say’s she has never met a food she didn’t like so we further suspect that Dr. Z has never cooked for her.

She takes seriously the training of parents and loves to see how the parents grow from being scared to being fully confident to care for their new baby when it’s time to go home.  She views the best part as the relationships that spring up between nurses and parents and patients as a result of the happenstance that threw everyone together.   Although there are emotional ups and downs she views each success as a fundamentally deep spiritual experience.  Together we all learn what’s important and valuable in this life.

As Summer grows we look forward to her getting to know Sharyl and we know this will be sooner rather than later because Sharyl has insisted that she be allowed to baby sit Summer for us really soon.  No doubt Lisa and I will take her up on her offer.

The Others

There were so many other care providers for Summer in the NICU...alas as I got this blog rolling and decided to interview as many of them as I could, by the time summer was discharged I did not get to them all.  With good intentions I thought I would return.  Unfortunately, time and the next 16 years went by in a blur, but here are their names for the record.

Debbie, Norma, Cathy, Carole, Melanie, Elaine, Dr. V, Dr. H, and, Dr. G - The chief of Neonatology. We would also like to thank Trisa M, who was a duty nurse at the NICU,  but later became a nurse at our pediatrician who would look after Summer for many years as she was growing up.  Premie's require a bit more special care through the early years and it was nice to have a trained neo-natal nurse on the staff with our pediatrician.

Week 11 - Entering the Home Stretch

Day 71 - Saturday April 17, 1998

Mom headed south for her VA Beach Baby Shower.  Dad took the opportunity to bond with Summer.  He showed up at the NICU a little after 2pm.  Today was the day Dad would get to bottle feed Summer by himself.  He started with a bottle of breast milk supplemented with the puppy chow.  The bottle was filled to 36cc.  A few cc’s more than her regular feeding incase he spilled some.    Dad learned the proper techniques for bottle feeding.  Hold the bottle like a pencil between your thumb and forefinger.  Poke the nipple into the mouth on top of the tounge.  Use your ring finger on the same hand to support her chin.  And twirl the bottle in her mouth if she stops sucking.  It takes a lot of dexterity but Dad finally got the hang of it.  Summer responded well and Dad only choked her with too much milk one.  Summer’s response was a quick cough and a red face.  Dad returned later in the evening to interview several of the nurses who work the graveyard shift. Long haired Debbie, one of Summer’s primary nurses who has spent many many hours with Summer through the evenings, and Marlena, Summer’s first nurse from her very first night.  Both of their biographies are available at the Doc & Nurse page.

Day 72- Sunday April 18, 1998

Summer is 4 lbs today.  What a milestone! Mom was still away so Dad went back to the NICU to help with Summer’s meals - which obviously seem to be getting Summer fat.  This time Dad got to do a little of everything.  He changed her diaper for the first time, took her temperature, (98.4), and bottle fed her.  The hardest part of the diaper change was figuring out how to rebutton her the little I piece outfit she was wearing.  Ahn had to held.  She responded very well to the feeding and was wide awake through out most of it..  Dad held her for over an hour and a half.  He talked to her and played music.  She was very happy considering she had to endure another eye exam earlier in the morning.  This exam reveal no ROP.  She will continue to be monitored. .  Dad put her back in her isolete and didn’t even bang her head.

Day 73 - Monday 19 April 1998

Summer has two goals for the week.  This week she must go to full oral feedings and begin living in an open crib.  Over night we discovered she was removed from her nasal canula.  Now she is breathing room air full time.  Later in the day they determined she was holding her temperature well enough to go to the open crib.  Her new home is terrific. The corner of the NICU is so quiet and so unencumbered with equipment.  The machines and the noise that were such a part of Summer’s early life are now absent.  I can project the emptiness that will be felt in that corner of the NICU when Summer leaves.  She was so full of life she lit up that corner of the NICU for almost 3 months.  Now the silent lifeless machines will stand-by until they are called on again.  Not even a peep is heard from Summer as she sleeps silently in the open crib completely covered with blankets.   It’s been a good day.

Day 74- Tuesday 20 April 1998

Mom is trying to show up for as many feedings as she can.  She is nervous that Summer will reject her nursings in favor of the bottle.  The nurses let Mom know that many very early premies have trouble every adjusting to breast feeds but Summer shows all the right signs of being able to do well.  When mom is not around the nurses attempt to bottle feed.  They experiment with various nipples to try to regulate the flow of milk so that Summer will get enough and not get tired too quickly, but also will not choke because of the fast milk flow.  When Summer gets tired they simply feed her the rest through her gavage tube.  The idea is to get her strong enough to take the full feeding and wean her from the gavage tube.  Dad came in today for her 5:30 and Summer almost took the whole bottle.  Dad continued to learn how to hold the bottle and rotate it to stimulate her to suck.  He supported her chin with his ring finger as her was holding the bottle in her mouth.  He is beginning to get the hang of it.  Dad then tried to burp her.  He wasn’t very successful.  Burping seems unnatural to him.  It’s hard to hold a small baby and pat her on the back.  She squirms a lot and is never patting her hard enough.  Apparently it takes a firm pat on the back to get this stuff to work.   Ahn was able to get her to burp however.  Mom was upset with Dad for feeding her the bottle because she planned to come in an nurse at 8:30 pm and didn’t want Summer to be tired.  But the new rule is that if Summer will take a bottle they have to give it to her because the overall goal is to eliminate the gavage feedings.

Day 75- Wednesday 21 April 1998

Feedings continue.  Mom is having more success with the nursing.  Summer seems to favor one side over the other however.  Mom is struggling with the same types of coordination problems dad was having.  How to you hold Summer while she is nursing properly?  How do you hold her so she is the most receptive?  Mom is getting the hang and the nurses keep encouraging her.  By the end of the day Mom is very happy with her own and Summer’s performance.  Summer is beginning to realize what she must do in order to eat.

Day 76- Thursday 22 April 1998

Summer is almost completely on oral feeding.  Mom is very happy with the progress of her  nursing. After each feeding just a residual amount of milk has to be served up via the gavage tube.  It wont be long now before she is completely on oral feedings.  Dad showed up after class but did not feed Summer this evening.  Instead he interviewed some more of the medical staff.  Time seems to be running out for Dad to speak with everyone.  Dad did make it home in time to see Seinfeld and record it for Summer.

Day 77- Friday 23 April 1998

Today was Mom and Dad’s first training day.  We are to spend 12 hours alone with Summer in our own private room.  Dad took the day off of work.  We used a older style monitor that is not as accurate as the one in the NICU.  The alarm was going off almost continually throughout the day.  Sharyl assured us that it was just picking up motion.  When Summer was asleep seemed to be the only time the monitor wasn’t going off.  She must be right.  Every 2 ½  hours or so Summer would wake up to feed.  Mom would nurse her for most of the day.  Just a few bottles were used to deliver her medications.  We held her while she was sleeping a great deal.  She seemed to enjoy this.  By the end of the day 12 hours had ticked by and we didn’t realize it.  We will get to spend one more day with Summer before she comes home.  We are hoping that will be within two weeks.  Oddly enough, although tensions did increase during times throughout the day, mom and dad didn’t get too upset with one another.  This is a good sign.

Week 10 - Sharing the Good News on Easter Sunday

Day 64 - Saturday April 10, 1998

Mom spent most of the day with Summer.  Dad stayed at home and tried to catch up on a large number of projects.  Things at the NICU are going well.  Today they are considering switching Summer over to 100% breast milk.  It will be important to see how Summer nurses and gains weight as a result of the switch.  If the breast milk does not contain enough calories they will pump it up with some rice and lamb mix. (Sounds like puppy chow).  Later in the evening Mom and Dad attend the DC United game at RFK stadium.  Mom loved it.  United defeated the Colorado Rapids in a shoot out.  Final score 3-3 RT 2-3 SO.

Day 65 - Sunday April 11, 1998 - Easter Sunday

Mom and Dad attend services and learn that Jesus truly was more than a carpenter.  All of our love and praise go to the one who died and has risen.  The one who has given Summer life and given her to us.  Mom, Dad, and Dad’s parents visit with Summer on this special day.   Since Easter is such a special day in the lives of Christians I thought it would be appropriate to reach out through the life of Summer to ask those of you who have been following her story if you truly believe in Jesus ?  Do you know that he died for our sins?  Do you believe he is the son of God seated in heaven at God’s right hand? Do you believe that 2000 years ago he walked on this very earth? Do you believe that he lived and died and was resurrected?  As Christians we must believe this?  We have been praying hard for Summer since the moment she was born.  Many, many people have been praying for Summer as well.  Since Summer is in such good shape I sometimes think Summer didn’t need so many prayers.  But I stop myself and remember, would Summer be in such good shape without the prayers?  When prayers are working and things are going well it’s easy to dismiss them since no one miracle occurred that we can point to.  But as we look back over the past two months  a long list of miracles were necessary in order to bring Summer to where she is now.  God has answered our prayers.  If you believe God had a hand in this say, “Amen”.  If you believe our Lord  has been watching over Summer and is using her story to enter your life, consider asking him in.  Josh McDowell in his book, "More than a Carpenter" asks us to pray this simple prayer in order to open the door.  “Lord Jesus, I need you.  Thank you for dying on the cross for me.  Forgive me and cleanse me.  Right this moment I trust you as my Savior and Lord.  Make me the type of person you created me to be.  In Christ name.  Amen”.

Day 66 - Monday April 12, 1998

Summer is not gaining weight so the Docs are definitely switching to the rice and lamb additives to the breast milk.  We will see how that goes.  Mom is nursing Summer twice a day.  Summer expends a lot of energy nursing so this also burns calories.  To prevent nipple confusion, feedings that are not at the breast are gavage.  This way we are sure she is getting the nutrition as well.  Summer also had an eye test on Sunday night.  When the retractors were placed in Summer’s eyes she cried out very loudly.  Mom and Dad heard her loud crys for the first time.  Ahn says she can’t look at the babies with the retractors in their eyes.  It’s too sad.  But Summer’s eyes are doing well.  Still immature but no signs of ROP.  Retinopathy of Prematurity is a condition where the blood vessel in the eye develop abnormally.  The vessels which should be growing outward towards the retina curl back and grow towards the center of the eye.  Summer has no sign of this condition but is still immature.  She will be monitored closely for the development of this condition.   One theory about the cause of  this eye damage in increase in oxygen saturation.  This is why the Summer’s oxygen saturation is monitored so closely.

Day 67 - Tuesday April 13, 1998

Today the Docs told Lisa that Summer will be able to come home within 3 to 4 weeks.  Wow!  That’s really coming quick.  Before than Dad has a lot of mental preparation to do.  Breast feeding are going well.  The nurses say Summer is doing a good job.  Her weight is back on the rise.  They continue to gavage feed in between nursing sessions.  Summer is averaging about 1 A & B per day.  This is great.  To go home without a monitor though she will have to demonstrate no As & Bs for over two weeks.  More good news today, the Docs think Summer will be moving out of the isolette and into an open crib soon.

Day 68 - Wednesday April 14, 1998

Things are running smooth.  Summer gained weight again.  Mom is still on two shifts per day and pumping in between.  Mom and Dad both went up to the NICU for the 8:30pm feeding.  Dad shot some video and took pictures while mom nursed and burped Summer.  The nursing staff seems to leave us completely alone with Summer.  Mom demonstates complete knowledge of how to handle Summer’s care.  We talk briefly of the days prior to bringing Summer home.  The NICU is set up so that the parents can spend the night or a couple of nights caring completely for their baby alone.  That way they will not be so scared making it through the night.  Mom and Dad look forward to spending the night in the NICU.  Dad needs to notify work that he will be taking a week off when Summer comes home.  This will now be very soon.

Day 69 - Thursday April 15, 1998

Mom goes in to nurse Summer at 2:30 and again at 8:30.  Dad has class tonight.  In class Dad gets his mid-term exam returned.  Dad scored a 94 and was really happy considering how much neglect his class has received this semester.  He goes to the NICU after class to tell Summer the good news.  Summer was happy and said, “You are really smart daddy, but you still paid to much for that camcorder.” Dad rushes home to watch Seinfeld and doesn’t over lap with mom when she returns for the 8:30 feeding.  Mom reports that Summer did very well with the feeding.  Mom stays for a long time and has some long conversations with Dr. Z about what we can expect when Summer comes home with us.  Mom thinks Dad will be over protective of Summer and tells Dad to make sure he talks with Dr. Z.

Day 70 - Friday April 16, 1998

Dad met mom in the NICU after work to take some pictures and shoot some video for mom to take with her to her baby shower over the weekend.  Dad has been working all week at reducing 10 hours of video into a short 30 min vhs format mom can show at the shower.  The final minutes will be the most up to date shots available.  Summer is eating and mom is holding her when Dad arrives.  Dad begins shooting video, taking pictures with the 35mm, and snapping a few poleroids.  With all the flash and auto winding going on, Summer thinks she is at a press conference and begins answering questions.  Well maybe not yet.  Summer is 3 lbs 14 ½ oz today.  She is knocking at the 4 lbs door.  Hopefully by Monday she will have crossed the threshold.

Week Nine - Nursing Begins

Day 57 - Saturday April 4, 1998

Mom held down all duties today.  Summer is in fine shape starting to inch once by once into the 3 lbs range. Mom is going in and constantly spending most of the day in the NICU. The nurses let her do just about everything now.  She holds her, changes her diaper, takes her temperature, helps feed her, and cleans her up.   Dad calls from Florida to check on Summer’s condition.  All clear.

Day 58 - Saturday April 4, 1998

Dad is still in Florida at the family renunion.  The family is happy to talk with Dad and see all the pictures. They are glad everything is going well and talk of  Summer being there to join us at the next family reunion.

Dad checks in with Mom and Summer and everything is OK.  Summer has gain another ounce. She is officially 3 lbs 2 ozs.

Dad calls Mom to check on Summer and everything is A OK.  Dad Flys home gets in the car and drive to the NICU to meet Mom.  They visit with Summer and then fo to Church to see a performance by the Internationally acclaimed Christian Rock Group GLAD.  It was a wonderful performance.  Mom and Dad then go to Generous Georges for Pizza and Cap off the night by visiting Summer again.

Day 59 - Monday April 5, 1998

Summer is off of the temperature control unit.  She seems to be maintaining and controlling her body temperature.  This is a big step towards beginning to prepare for coming home.  There is no longer a reason for her to remain in the isolete.  She will be in an open crib soon.  The Docs just want her to gain a little more weight.  Mom continues to visit for long periods of time.  Within days she is told nursing will begin.  First they will start with physical therapy to make her suck, swallow, breath mechinism is in working order.  They try getting her to suck on a  rubber nipple - and she responds well.  Other physical therapy exercises include bringing her hands to her mouth so she can suck on them and rubbing her hands and feet together so she can

get the feel of moving them around.  So far she is responding well to every exercise.

Day 60 - Tuesday April 5, 1998

Lisa is getting excited - Breast feeding looms real.  They are checking her breast milk to make sure the incident of normal bacteria is low enough for Summer.  If it is they can begin  immediately.  Summer is progressing well in her weight - today she is up to 3 lbs 8 ozs.  That’s 3 ½ lbs.   Her length and head circumference are also growing accordingly.  Summer still remains in the 10th percentile for her size but she has grown proportionally since birth - and is steadily tracking along the growth nominal growth curve charts - just under the 50 percentile.

Day 61 - Wednesday April 5, 1998

Cultures are back.  Lisa’s breast milk is USDA Approved Grade A.  Nursing begins immediately and they can transition to a full diet of the liquid gold.  Summer will only being nursing to strengthen herself and to get used to it.  One 10 minute session a day.  They rest she will be given or take from a bottle.  They immediately have to change nipples from premie to new born because Summer’s suck is so strong.  Lisa is extremely happy and reports that the breast feeding experience is like nothing else she has ever done in her life.

Day 62 - Thursday April 5, 1998

Mom begins two a day nursing sessions the Docs think things are going so well she might as well try two 10 minute sessions a day.  Lisa  is very proud and extremely excited about being able to give Summer so much.  Summer is also transition to taking only breast milk. Mom is thankful that she has been pumping every three hours for the past nine weeks.  Her milk supply seems to grow only stronger and now Summer is ready to receive it.  Summer will be able to nurse for a little bit each day but will still be given breast milk through the gavage tube or bottle to insure she has taken in enough nutrition.  As she grows they might even augment the mother’s milk with a rice mix give it an extra boost.  Dad heads  to say hi to his fat little baby girl who is now 3 lbs 10 ounces.

Day 63 - Friday April 5, 1998

Mom spends a lot of time in the NICU.  She is nursing Summer two times a day.  Dad has  not been there for the nursing yet so mom schedules her next nursing for 8:30pm.  Mom and Dad  both go to the NICU at 8:00.  Dad watches as Mom changes Summer’s diaper and takes her  temperature.  Summer has some reflux in her gavage tube but we are told this is normal reflux  activity.  If she is getting sick from the breat milk she would vomit and vomiting is a lot more violent than excreting milk back up the gavage tube.  So her feedings of breast milk are going well.

Mom prepares for nursing by pumping to get the flow started so Summer will have an easier time of things. Dad watches as the nursing begins.  Summer immediately begins to root and instinctively know what to do. The current plan is to nurse two times a day but only for a fewminutes.  It is still very taxing for Summer so we have to bring her along slowly.  Dad shot a lot of video and was glad to be a part of the experience. Bugger off Cat Stevens, I got pictures!

We also discovered today that the burn on Summer’s left foot has left some considerable scar tissue.  This tissue is starting to retract.  It will be important for the physical therapist to exercisethe skin in this region and apply lotions - such as Vitamin E. To loosen up the scar tissue andhelp it to heal.  As Summer improves we are beginning to see little indicators, remnants, of the tramatic ordeal she has been through.  These she will carry with her for entire life as little reminders.  We are sure more will surface but are blessed to have her with us.

The Cat's in the Cradle - Weeks 7 & 8

Harry Chapin's Song, "Cat's in the Cradle" went to number 1 in 1974.  Harry Chapin died, in 1981.  When I placed the lyrics to his song in this blog in 1998 the song was firmly in the Oldie but Goodie category, a timeless ballad to parents and the on-ward march of generations that I prayed would not pass Lisa and I by. Now another 16 years later and we were not passed us by. Summer is taking Driver's Ed classes and the mantle (or our car keys) is about to be passed to her generation.  The "Cat's in the Cradle" remains a timeless ballad.  Try not to cry.

Day 44 & 45

The NICU was quiet and we were able to conduct an interview with Alison one of the nurses. Summer was sleeping soundly and barely stirred. Although she did stretch out her longs legs from time to time.

Day 46 & 47

Summer continues to gain weight like a little domestic pig.  Mom visits Summer and holds her for over an hour.  Everyone is beginning to think Summer looks just like her Dad, including Mom.  She is stable most of the day and only has a few As & Bs after she eats.  Her feeding has been increased to 25 cc’s every 3 hours.

Day 48 & Day 49

Mom and Dad head to the hospital early.   As they walk into the Hospital Dad is glad Mom found out about the situation last night.  Dr. Z greets them and explains the situation. There is nothing that can be done. [note: there is no record of the this situation in my notes] Summer is doing well and all indications are that she will continue to do so.  The doctors decide it is time again to take Summer off of the CPAP and allow her to try it alone.  She responds well to just the nasal canula.  Hopefully we would not be seeing that CPAP again.  

Day 50 & 51

The kite festival is getting under way in D.C. down on the Mall. Mom and Dad were originally scheduled to go but the events from Friday are force them to head in to speak with the Doctors.  Summer is doing well without the CPAP.  She is happy and moving her head from side to side - free from that uncomfortable device.  Mom heads in and stays most of the day.  Summer has a good day and again avoids most of the As & Bs except for a few dips.  She gained another ounce during the day. After the trip to the Hospital Mom and Dad drive down to the Mall to see the kites and the cherry blossoms.  The kites are not that exciting but the Cherry Blossoms are awesome.

Day 52 & 53

Game 2 - D.C. United the New England Revolution.  Dad is excited about going this evening. Today Summer was visited by the Ophthalmologist.  This is Summer’s first eye exam.  The doctor notes vascular immaturity in Summer’s eyes, but this is to be expected.  The eye doc will revisit in 2 weeks to se how Summer is progressing. Mom and Dad head for Church and then over to the Hospital.  Summer is happy to see them.  She shows this by smiling and moving. Mom holds her for over an hour.  During this hour Mom feeds her a full 24 cc’s of formula through the gavage tube and Dad takes great videos.  Summer is doing well with only the nasal canula.  Only a few dips in her Oxygen Sats and her breathing throughout the day. She pulls herself out of most of them.  Summer is gaining weight almost everyday now.

Day 53 & 54

The Paula Jones law suit against Bill Clinton is dismissed by a Little Rock Judge.  The Nation wonders if it is an elaborate April Fool’s joke.  Can’t wait to catch the G. Gordon Liddy Show tomorrow. Severe thunder storms today.  Dad and mom begin to wonder if the redundant power supplies at the hospital would be put to the test.  Today Summer’s As & Bs increased a little.  Dr. Z ordered a chest x-ray to see if there was any fluid in her lungs.  Fluid could occur for two reasons.  First Summer is retaining water.  She is already on a diuretic to help reduce this.  Second, Summer could be aspirating - formula in her stomach refluxing in her throat and then slipping back down her trachea into her lungs.  The x-ray showed no signs of this.  Dr. Z. ordered another blood transfusion.  It has been about 4 weeks so Summer could definitely use the help.  The transfusion does help. Summer’s is resting nicely through all the Thunder storms. And the power never goes out. Mom and dad are relieved.

Day 55 & 56

Dad and mom head up to the NICU late Thursday night.  They stare through the clear lexan of the isolete hoping that somehow Summer will understand their love.  Tomorrow Dad will be boarding an airplane for Florida to attend a family reunion and he will not see her again until late Sunday night. Mom will not be leaving Summer's side.  The tickets were purchased long before Summer’s surprise arrival and although all of the family members would understand if Dad decided to stay home, Summer is in such great shape it seems that missing a few days would be better than missing these important  family gatherings.  The the decision was tough but Dad decides to go.  Mom is staying close in case any problems surface - and of course - Dad will stay in close contact and rocket home should they arise.  As Dad continues to stare at Summer one of Summer’s Alternate Primary Nurses - Cathy - approaches and asks Dad if he has held her yet?  He sheepishly replies that he held her once about four weeks ago for five minutes when they changed isoletes.  “Well we will change that right now” was Cathy’s reply.  Cathy sat Dad in the glider rocker next to the isolete, reached into the isolete and snatched up Summer in a ball of blankets and deposited her into her Father’s arms.  Summer opened her eyes, looked up at him, and yawned.  Wow!  Summer has changed considerably since he held her at 1 lbs 9 ounces.  Now she is just turned 3 lbs.  There is something in the blankets, he can feel her back, he can feel her breathing, he can hear the small little sounds she makes.  Dad holds her for almost an hour just staring down and talking to her.  Cathy takes some polaroids to capture the moment.  At this moment Dad can’t justify the trip to the family reunion and has this strong feelings that upon his return Summer will be grown an  ready to leave for college - But Dad’s Dad will be at the family reunion and it will be nice to spend some time with him as well - or maybe Dad is just letting that old “Cat’s in the Cradle Song” screw up his ability to think clearly.  

My child arrived just the other day

She came to the world in the usual way

But there were planes to catch and bills to pay

She learned to walk while I was away

And she was talking before I knew it

and as she grew she’d say

I’m gonna be like him

You know I'm gonna be like him

And the cat’s in the cradle and the silver spoon

Little boy blue and the man in the moon

When you coming home dad - I don’t know when

But we will get together then

You know well have a good time then.

My daughter turned ten just the other day

She said thanks for the ball (soccer) Dad come on lets play

Can you teach me to throw (Kick) I said not today

I’ve got a lot to do she said, “That’s Ok”

And as she walked away her smile never dimmed

She said I’m gonna be like him

I’m gonna be a lot like him

Well she came from college just he other day

So much like a women I just had to say

Girl I’m proud of you could you sit for awhile

She shook her head and said with a smile

What I’d really like Dad is to borrow the car keys

See you later can I have them please.

I’ve long since retired and my girl’s moved away

I called her up just the other day

I said I’d like to see you if you don’t mind

She said I’d love to Dad if I could find the time

You see my new jobs a hassle and the Kids got the flu

But it been sure nice talking to you Dad

It’s been sure nice talking to you

And as I hung up the phone it occurred to me

My girl was just like me

She’d grown up just like me

And the cat’s in the cradle and the silver spoon

Little boy blue and the man in the moon

When you coming home dad - I don’t know when

But we will get together then

You know we’ll have a good time then.

As the hour came to a close we said a prayer with Summer and told her we loved her.

Miracle in the Neighborhood

Day 36 - Saturday March 14, 1998

Summer is in the pink. For two reasons. First, her hermaticrites came back at 31 indicating that a blood transfusion was necessary. At the time more than 13cc’s of blood had been drawn for various reasons over the past week and a half. With the added infusion of blood her skin color wasn’t as pale and her A&B spells returned to her normal amounts. Second, today Summer was wearing a pick dress that one of the other mothers in the NICU brought in for Summer to wear. She is being feed 17cc’s of formula every two hours. Instead of quickly dumping the 17cc’s of formula into Summer’s small stomach through the gavage tube Ms W (one of Summer’s primary nurses) uses a syringe and a pumping machine to inject the 17cc’s of formula over the course of an hour. This reduces the impact of 17cc’s entering Summer’s stomach at one. Therefore a full tummy is not pressing against her diaphram making it harder for her to breath. Mom and Dad are extremely happy that the transfusion solved the instability in Summer’s vitals. This is the third time low blood has caused Summer condition to seem unstable. Dad will ask the doctor today why they are waiting for her hermaticrit level to drop below 35 when Summer clearly shows signs when the levels drop into the high thirties. Lisa’s mom and sister were up from VA Beach today to see Summer. They are very happy with Summer’s progress. Grand-mom got to see Summer’s eyes open for the first time. Mom and Dad when shopping for clothes for Summer today. The best place to shop is in the doll clothes section of any toy store. We went to Toys R Us. We purchased two little cotton doll t-shirts that Summer can wear with her diaper and a little cotton jump suit. Both outfits were approved by Doctor V. Shortly after Doctor V pulled Lisa aside and asked her to promise two things. First, that he be invited to Summer’s baptism, and second, that he be invited to her wedding. If that isn’t a vote of confidence from the right source, I don’t know what is. Mom was giddy the entire night. As we drove home from the hospital her and her sister sang all of their favorite songs at the top of there lungs. Those Were the Days My Friend, Jeremiah was a Bull Frog, Rain Drops Keep Falling on My Head, and Hawaii Five-O. Dad almost wrecked the car laughing. 

Day 37 - Sunday March 15, 1998

Today was a busy day for visitors to see Summer. One sister, two grandma’s, and a grand dad stopped by. Summer was dressed in her best Sunday Pink dress for the occasion. Although Summer looks cute in her dresses, Mom and dad are concerned about comfort. They bought some little cotton doll t-shirts for Summer to wear with her diaper. They think these will be much more comfortable for her. Today the Nurses are noticing an increase in the number of Apnea and Bradicardia or A&B episodes Summer is having. Apnea is when Summer forgets to breath deeply and the effects of her respiration do not help her oxygen saturation. In fact her saturation drops dramatically - sometimes into the 40% range where she turns very blue. She has to be stimulated in order to take in a deep breath of air and begin breathing normally again. A bradicardia is when her heart beat drops. This decrease in blood flow also adds to her decrease in oxygen satuation. Typically and A&B will occur together. First Summer will start very shallow breathing and then her heart rate will drop. Her oxygen saturation is quick to follow. Then all the alarms go off and a nurse runs for the isolete to begin stimulating Summer. No one really knows what causes A&B spells. But they are very common in all premature babies. Dad’s guess is that neurologically, the premie still thinks they are in the womb and there is not real reason to breath. When they get tired they stop - there is no signal from the brain indicating that not breathing is a bad thing. Sometimes they come out of it on their own - but because they lose so much oxygen saturation the fast they come back up the better. They are continuing a treatment of a stimulant to try to get Summer to remember to breath. So far the A&B spells are not to bad and considered normal. 

Day 38 - Monday March 16, 1998

The A&B spells are continuing. Summer is dropping into one about 8 to 10 times a day now. This is something they are now watching very closely. Mom and Dad are asking about A&B’s everytime they call now. Overnight, Summer gained a whole lot of weight. Almost 60 grams. This is to much weight. Most of it is water weight and you can see from the Summers feet that she is bloated with water. They start an IV to administer a diuretic to reduce Summer’s water weight. If she accumlates fluid in her lungs it could be what is causing the increased episodes of A&Bs. Fluid in the lungs is bad. Also, for the first time in many weeks, the talk of infection comes back. A&Bs can also be a sign that Summer has an infection. Quickly Mom and Dad are taking a dive the roller coaster. Fluid in the lungs is bad, infection is bad, what’s causing the As and Bs. They do not let mom hold Summer today. Her condition seems bad enough not to simulation. Dr. Z is back from vacation. She can’t determine the cause yet but is pursuing every avenue. They take a lung xray that shows haziness in the lungs. This is inconclusive. Best case scenario is that Summer is just getting tired and needs to go back on CPAP. Worst case Summer has an infection. Aside from the A&Bs though, Summer shows no signs of being sick. Anh tells Dad one more thing that Dad forgets to tell Mom. Dr. Z heard a slight murmur in Summer’s heart. This could indicate that the Ductus has opened back up. Dad recognizes that he should tell Mom everything but can’t bring himself to tell her about the Ductus or the lung xray. It was hard enough. It’s hard enough just reporting that Summer’s condition seems to be deteriorating - let alone speculate about uncertainties. Monday night is a tossing and turning night.

Day 39 - Tuesday March 17, 1998

Things are getting worse today. Another round of inconclusive x-rays and a sonogram.Mom is there for the sonogram and starts seeing things on the monitor. We will have to wait for the radiologist to read the sonogram. Also, Summer’s A&B are now beginning to cluster. This means she goes from one spell to the next and its requires a lot more stimulation to bring her out of it. She is up to 18 - 20 A&Bs a day. That means they are stimlating her almost once an hour. Summer hasn’t had a good long sleep now in a few days. When dad looks in on her his first instinct is that - she looks healthy she just looks very tired. Dad thinks if you just give her a can of Mountain Dew she will be fine. Weird. Doc H has just changed her stimulation medication. He changed it to caffine. Dad was only joking but apparently caffine is a great simulation medication to prevent As & Bs. Summer is still getting no rest. They beat her up now several times an hour. And with the clustering going on Dr. H says he will probably put her back on the CPAP. Dad thinks it’s a great idea because he thinks Summer just needs some sleep. Shes been awaken every hour now for almost 3 days. Think how you would feel. Its a vicious circle. They have to wake her up to remind her to breath, but the more they wake her up the tired she becomes, and the reason she doesn’t want to breath is because she is so tired. Through out the day and night all the tests come back. No infection, no bleeding, nothing to indicate a real cause. We will see how things are in the morning. Mom and Dad are praying steadily.

Day 40 - Wednesday March 18, 1998

Dr. H put Summer back on the CPAP. The CPAP is the device placed into Summer’s nose that applies back pressure into her lungs. When she breaths out the pressure keeps Summer’s lungs from closing completely. This makes it easier for her reinflate them when she breaths back in. Another version of this device can be used in the home for adults who suffer from Apnea andsnoreing. It works the same way. I’m still not sure how the device works but Summer settled down almost immediately. Mom was a little worried that this indicated a back slide for Summer.I might be a little one - but the benefits to Summer - and the immediate improvement in her condition - Less episodes of Apnea tell us that it is exactly what Summer needs. This will allow her to concentrate on sleeping and growing and less on trying to breath. Something she shouldn’t be wasting energy on doing until she gets a little older. Mom went to the NICU today but was not able to hold Summer because they are trying to let her catch up on her sleep.

Day 41 - Thurday March 19, 1998

Today’s Farifax Times headline reads, “The Neighborhood Miracle, Fairfax City Family Feels Support of the Community” by Dominic Bonaiuto. The text of this article appears on this webpage at Article. We are amazed at what Dominic put into this article yet he agonized over the things he had to leave out. The article seems complete in our minds. Summer has improved 100% Her As & Bs have subsided. She has one or two dips a day but comes right out of them on her own. Dad went by the NICU after his Mid-Term Exam and stayed for 3 hours. Since is was quiet in the NICU Dad was able to interview Linda, Norine, and Dr. Z. Their bios are all posted under Doctor’s and Nurses. This good to see Summer getting her sleep back. The alertness in her eyes is returning.

Day 42 - Friday March 20, 1998

Today was another great day for Summer and its the first day of Spring. Also, it’s Summer’s Aunt Ariane’s birthday. Mom finally got to hold Summer again. She is tolerating her feeds well and weighed in at 1030 grams. This is about 2 lbs 4 ounces. Her A&Bs have subsided and Summer has been getting plenty of sleep. You can see the alertness in her eyes when she is awake. The CPAP - although I can’t understand how it is helping at all, is a wonderful piece of equipment. It’s all that Summer needed. We brought a copy of the news paper article in for the medical staff to read. Dad had a hard time finding copies this morning. He had to drive several places to buy a copy. When he got to work he discovered that many of his coworkers were delivered the paper at home. It was great to get another round of support at the office. When Dad talked to mom, worried that he didn’t find enough copies of the news paper, Mom told him that the neighbor had dropped of 16 copies. Hopefully that will be enough.