The Early Days with my Newborn Daughter

Depending on the extent of your baby’s first surgery it will be one or two days until your baby can take fluids by mouth.  When that time comes nurses and/or lactation consultants, specially trained nurses who can help with breast feeding your baby, can help the mother to breastfeed or express milk to be fed through a bottle if you are unable to hold your baby due to hip immobilization devices.  I have found that nurses also serve to push and encourage mothers to get plenty of rest and good nutrition.  Take it from me, this is difficult in a hospital setting and dealing with the stress of the surgery and the condition of your newborn.   Often times you lose track of time, you don’t feel like eating and let’s face it you really don’t want to leave your baby.  I used to get scolded from the nurses for not staying on schedule with pumping breast milk.  I wanted to spend as much time as possible with my daughter.  I didn’t know exactly what I was going to miss by leaving to go to the special little room to pump, but whatever it was I was not going to miss it. 
 

My daughter’s primary NICU nurse was great.  Oh she was no nonsense and if you wanted to hear the sugar coated version of things she was NOT the one to go too, but she was great.  She looked after my daughter like she was her own.  She knew all her stats all the time.  She knew when something didn’t add up, she also knew when my daughter just wasn’t right even though all the machines and monitors indicated there was nothing wrong.  In addition to all of that she watched the family.  She knew who was there, for how long, what they brought and what they did.  She also knew that I was there all day and into the night every day and with little or no breaks. She was the one who basically got after me to take care of myself.  She would come by at regular intervals and ask things like: when did you pump last, did you eat, what’s the weather like outside, etc.  All things that were essentially saying, “Get up and outta here for a little bit for your own health and well being.”  She wasn’t afraid either to say, “Get up and go somewhere, anywhere,” if she saw that her “subtle” hints were hitting against a brick wall.

After surgery your baby will have pain and discomfort.  Pain medication will be given to your baby as needed.  There are many different ways that you can assess the pain level in your baby and help to comfort your baby.  If your baby is in pain your baby may not be sleeping well, may cry inconsolably, seem agitated, or their heart rate and breathing may be fast.  In my daughter’s case, her signs were that her heart rate would be fast and she would hold her breath, so her oxygen levels were always dropping.   

Some things that may comfort your baby are a quiet environment with dim lights, your soft touch and the sound of your voice, music, and swaddling the areas of the body that can be.  The nurses also told me that research has shown that sucking on a pacifier also soothes an irritable baby.  At first, my daughter had problems with her suck reflex so, at first, the pacifier did little.  However, for feeding purposes, a therapist came in and stimulated her suck reflex and then my daughter took to a pacifier so well that it took four years to get her to let go of it.  I think every picture we have of her for the first four years of her life she has a pacifier in her mouth, no matter what she was doing.

Since parent-child bonding is essential to the healthy development of the newborn, many hospitals offer “rooming in” or a sleeping sofa for parents.  These allow parents to remain close to their baby and be involved in all aspects of care.  Parents begin to learn the baby’s routine and to appreciate his or her unique personality.  The touch and voices of a mother and father comfort and provide security for the newborn.  Since my daughter was in the NICU for the whole duration of her first stay in the hospital we did not have this.

Prior to going home parents are taught the special care their baby requires.  If tubes are left in, parents will be taught how to care for the tubes and the skin.  Also, if the baby goes home in a cast, parents will be taught how to properly care for the cast and the skin below.

Parents may have many concerns regarding bringing home their new baby from the hospital after a major surgery.  In fact, when my daughter’s surgeon announced that he thought my daughter could go home straight from the NICU, I was petrified.  My daughter’s care team had been discussing moving her from the NICU to the regular “baby floor” but there were problems with space.  Then, all of the sudden, the surgeon suggests we take her home.  I remember having a long conversation with him on the phone.  I expressed my concerns and brought up the fact that she has never even been out of the NICU and now I was supposed to take her home and care for her.  He addressed those concerns pretty good, but of course I was unsure.  I remember asking him about her exposure to additional germs at home (out of what I thought at the time was a very safe virtually germ free environment of the NICU).  He told me in no uncertain terms, “With the germs that are floating around the NICU, you could take your daughter home, place her on a dirty kitchen floor and she would be exposed to fewer germs.” 

Before going home I had “educational sessions” with pediatric nurses and some of the surgeons themselves.  I meet with social services so they could give me information about support services in our area, set up medical supply companies, in home nursing, etc. The nurses in the NICU encouraged frequent phone contact and provided round the clock resources and medical advice any time of the day or night.

You may find it beneficial to talk with other parents of children born with bladder exstrophy.  Depending on your family’s location, these arrangements may be made by the hospital before the baby is discharged from the hospital.  Unfortunately, this is one of the areas I don’t think the hospital addressed very well with us.  We got a few brochures and phone numbers on support groups but they were for parents of children with varied special needs, but nothing specifically for our daughter’s condition. 

It wasn’t until my daughter was three years old that I found out about The ABC, and I got that information in a roundabout way.  It was during the hospitalization when my daughter had her “big surgery”, at that time she had double osteotomies, bladder augmentation, a pull through and an anal and vaginal opening created.  It was during one the morning rounds when the surgeons and residents came around.  At the end of the visit one of the residents hung back and said, “There is another little girl on the other side of the floor who had a similar surgery.  Would you like to meet the family?”  Of course I said yes and in a couple of days we were hooked up.  It was talking with this mother that I found out about The ABC.

Once we were home for the first time with our daughter I found that, even with education and preparation, I was afraid to care for my daughter who had been receiving intense medical and nursing.  Learning to understand my daughter’s behaviors and routine were compounded by worrying about my daughter’s urine output, fluid intake, medication regimen and watching for post-operative complications.  In addition, she was sent home with a central line and the fright that came along with that was overwhelming at times.

Day by day I learned about my daughter’s specific behaviors, what to watch for and which bodily functions need to be observed, what was normal and what wasn’t and soon it all became second nature.

Birthday!

Welcome

Hello, if you are reading this, you may have just discovered that your child, or a child in your life, was born with bladder, cloacal or another of the various forms of exstrophy.  Well, I am writing this because I am the parent of a daughter born with cloacal exstrophy over 10 years ago.  Exstrophy is a rare condition requiring specialized medical care and expertise.  It does not go away, your child will not “grow out of it” and while it can “repaired” through staged surgeries, it will affect your child for a lifetime.

At this point, you may be looking for information about this unique condition.  “Ignorance is bliss” may or may not be comforting to you at this point but it will not carry you very far into this journey.  So get up, dust yourself off and get back in the saddle.  My aim is to arm you with some information.  As this journey continues YOU will be the source of information concerning your child and exstrophy.

The diagnosis of bladder exstrophy is frightening, in the beginning.  Many parents first learn about exstrophy soon after the birth of their child, as we did.  The news came as a surprise even though I had a difficult pregnancy.  I had a feeling through my whole pregnancy that something was wrong with my daughter, but not something as drastic as exstrophy.  I had been through several prenatal ultrasounds because of my insistent urging to my obstetrician, but everything “looked good”.  He wrote me off as a nervous new Mom – to – be.  After my daughter’s birth, I, like other parents, was catapulted into the world of not only having the normal hopes and dreams for my newborn daughter, though at that particular point in time I questioned them, but also into a maze of a rare, complex and chronic health condition.  I was disoriented.  It was one of those times in my life where everything looked different, sounded different, felt different and even smelled different with the accompanying feeling of when am I going to wake up to realize this is not real.  Later I found that to maneuver through the maze I had to learn a new language (medicalese) and start drawing a new map.

After months of reading pregnancy and baby books, counting the weeks on the calendar and comparing what my daughter might look like at any given week with the in utero drawings in the books, this was not the birth experience that I dreamt of.  My feelings and emotions were already heightened due to a difficult pregnancy, anticipation, worry, having to be induced and then finally going through labor.  Yep.  I delivered naturally and with no epidural.  With the induction, my daughter and my body decided that it was going to sluggishly go through the whole day with me only being able to dilate to 3.  Then within ½ I went from 3 to PUSH!!! 

When my daughter finally arrived the whole atmosphere of the delivery room changed.  Everything went quiet.  My daughter wasn’t crying and no one was saying anything.  I began to worry.  Were my instincts throughout the pregnancy correct?  After a few seconds my daughter let out a howl and then never stopped crying.  I let out my breath (I hadn’t even realized I had been holding it).  Now I waited for news from the Dr.  Nothing.  Wasn’t there supposed to be the … BIG ANNOUCEMENT… The congratulations it is a boy or girl?  Nothing.  So I finally asked?  Is it a girl or a boy?  Is everything alright?  A nurse came to hold my hand as the Dr. announced there is a problem with the baby.  My whole line of vision went black, and then, as the images in the room started to reappear I asked again, “Is it a girl or a boy?”  My Dr. simply said, “We don’t know.  There is an area of the abdomen where the internal organs are on the outside and the “deformity” extends down to the organs of gender and we cannot tell.”  What?  You cannot tell?  I had never heard of such a thing.

My child was born with a “deformity” as the Dr. announced.  He said it was very rare and he wasn’t sure if this is what the “deformity” was, but it was called exstropy.  I don’t remember too much more about what was said at that time.  All I remember is asking over and over again, “Is she going to be OK?”  I didn’t yet know for sure if my daughter was indeed even a girl but I had a gut feeling she was.  I remember the nurse patting my hand and telling me, “Everything is going to be OK.”  However, I wasn’t sure if she meant it or if she was just trying to keep me from becoming hysterical.  I don’t think she knew.

My daughter was over being “attended” to and she was wailing.  A testament to the feisty attitude she still holds on strong to today.  I heard the nurses say that her apgar scores were all 9’s and 10’s.  I thought to myself. 9’s and 10’s, that's good right?  From what I heard and read that was good.  She couldn’t be that bad.  My husband was over looking at her and then came to my bedside and said, “You were right, it is a girl.”  The nurse quickly reprimanded him and said, “We don’t know that.  What you are seeing is the birth defect; the absence of a penis does not indicate it is not a boy.”

They wrapped my daughter up tight and I got to hold her for a minute and then she was whisked away to the intensive care unit.  Well, what little one they had.  They informed me that she would be transported sometime that night to a bigger facility because they did not have the expertise to deal with that type of birth defect.

The Dr. continued working on me and a little while later the neonatologist came in and said that my daughter was born with bladder extrophy.  They were not sure of the extent, however, as exstrophy is a spectrum defect.  He said he tried to “feel” around and suspicion that my daughter was a girl but that genetic tests would have to be performed to be able to tell for sure.  He said that my baby was going to be sent to the Children’s Hospital of Wisconsin in Milwaukee, WI, about 40 miles away. 

I felt overwhelmed, sad, frightened and confused.  I was grieving the loss of my notion of the perfect delivery and healthy baby.  I feared what the future held for my baby, as well as, for my family.  All that was wrapped up in the guilt I felt of what did I do wrong? At this time, the professional were the experts and I was the bystander. 

Since exstrophy is a rare birth condition, there are few doctors experienced in the surgical repair of the newborn with exstrophy.  Accessing the best care for my daughter on my own, at this point, was impossible.  So I entrusted the care of my precious newborn daughter to people I didn’t even know.  It was a very difficult time to think about the types of questions that should be asked.  This was just the beginning of the many stages of my daughter’s development that would be challenging and altered because of the condition of exstrophy.

By the time I was able to get up and go to the nursery to see my daughter the whole extended family was there.  My, now ex- husband, in his panicked state called everyone and since everyone was local they all came to the hospital.  In a sense, it was nice to have them there for support and also that way I wouldn’t have to explain everything over and over again to everyone.  Everyone was already there.  However, in another sense it was overwhelming and stressful too.  I wanted time to see my daughter and be alone with her before they transported her and I had to stop and have everyone question me as to how I was feeling, what I should be feeling and how I was suppose to act.  My, now ex sister-in-law actually said to me, “Do you know what is going on?  You are acting so out of it.”  Then again that family is so overly emotional that if you are not wailing in the hallways, you are not acting “appropriately.”  To do it over again, I would not have had everyone there.

Some parents have found that by limiting phone calls and visits from family and friends in the first 24 hours they can save themselves explanations about the unknown.  Once you have solid information about your baby’s health status you can determine how you will disseminate this information.  You might want to set up an account with caringbridge.org.  This website allows families, who are experiencing health challenges, connect with family and friends, privately, to give regular updates.  This way you can control the information that goes out and don’t have to deal with well meaning but sometimes intrusive questions.

I got to go into the nursery for a few minutes before the ambulance came to transport my baby.  She was still wailing up a storm.  At first, I was afraid to even touch her.  Finally, I held out my finger and put it in her hand and started to talk to her and as soon as she heard my voice she stopped crying, grasped my finger tight, and looked me in the eyes.  She was lying in the bassinet with her diaper open and I could, for the first time, see her abdomen and the protruding red mass of internal organs slipping out the opening.  To be honest, I didn’t know what to think, I had half heard so much in the last hour or so, I was still trying to process all that was happening and then the transport personnel came to take her.  I do have to say they were a wonderful bunch of people.  They didn’t rush in and ram you over while busily going about their business.  They explained what they knew to me and they described everything they were doing to my baby and why.  After they had her situated for transport they let me have time to say good-bye and then took a couple of Polaroid pictures for me to hold unto.  They gave me a time estimate of what it would take to transport my baby to The Children’s Hospital in Milwaukee and get her settled in the Neonatal Intensive Care unit up there.  They also said that someone would call from the hospital to let me know how she did on the trip.

I took everything in and then watched as they wheeled her out of the nursery, down the hall and into the elevators.  I stood in the hallway, holding my Polaroid pictures and finally at that point allowed myself to cry.


LINKS:
http://www.caringbridge.org/