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.

The First Surgery

Finally, Monday rolled around.  With all of our hospitalizations, one of the things I have grown to hate is weekends in the hospital.  In our experience, the weekend “doctors” usually consists of residents.  Not that they are bad people or Dr.’s, but when you are dealing with a rare condition to begin with, residents do not have the knowledge to advise you.  In some cases, they cannot even give you confidence that the hospital knows what it is doing.  During our journey there has been many times where I received misguided or misinformed information from residents.  There have even been episodes where I have thrown residents out of my daughter’s hospital room, more on that later.

Upon consultation with surgeons in the areas of urology, general surgery, genetics and orthopedics we found out several bits of information.  First, our daughter was indeed a girl!!!  Second, she had exstrophy (OK, we sort of knew that already), but they did not yet know how severe it was (ie. They didn’t know what her insides looked like).  And the final bit of news was that she would be having surgery later that day.

In the last couple of days, we learned that the effects of exstrophy can be “repaired”.  Not “cured,” as in make it go away completely, but “repaired” to improve the quality of life for the child.  Surgical repair of exstrophy is referred to as “staged reconstruction.”   This means that several different surgeries are required to accomplish the best possible results.  The actual number of surgeries varies from child to child and is also dependent on the severity of the exstrophy.   

The first goal of my daughter’s first surgery was to find out what her exact anatomy looked like.  Tests that had been run, up to this point, were inconclusive as to how everything fit together and looked inside. The surgeons also hoped to close the bladder, urethra and abdominal wall and to create a colostomy.

The surgeons explained to us that after surgery our daughter was going to be placed in traction.  Her legs would be placed together, wrapped and then positioned in a 90 degree angle to her body and held there with weights.  They explained that this would bring the pelvic bones together and would be done for two reasons.  One reason was to hold together the closure of the bladder and abdominal wall after surgery so that it could heal. 

The second reason was to try and correct one of the effects of exstropy, which was wide set pelvic bones.  The pelvic bones provide protection of the lower part of the bladder, urethra, and the muscles of the wall of the abdomen.  The muscles of the pelvic floor, which help to stop urination and provide continence, also are located there.  The surgeon’s explained that the opening in the pelvic bones would get bigger as my daughter grew and would not provide the protection and support needed for my daughter’s internal organs  and muscles in that area.  They explained that trying to close the pelvic bones, in this way, at this time was important because the pelvic bones were still soft.  They hoped that this attempt would prevent my daughter from having a hip osteomy later.

At about 7pm that night my daughter went in for what was supposed to be a couple hour “exploratory” surgery.  Five hours later, the two surgeons (urologist and general surgeon) emerged with good news.  They reported that my daughter had all her internal organs (with the exception of one kidney) including all her female organs.  They closed the bladder and internalized it, reconstructed a portion of the urethra and did some cosmetic work on the outside where only one tiny opening existed before.  Her abdomen cavity was closed and a colostomy was created.   They said they did a little more than expected because they found more to work with than they expected.  They did say that the bladder was still attached to the intestines through a fistula and would need to be separated later in life, but because she was so small they wanted to allow her time to grow and gain strength before the next reconstruction and further separation.

All in all it was good news.  I already knew that there would be more surgeries in the future so that was not a surprise. Everyone already knew that she had a form of bladder exstrophy and that the severity could not be determined until after this surgery.  Her diagnosis was now cloacal exstrophy, but the surgeons felt confident that, with further reconstructive surgeries, her outcome was going to be good. The surgeons prepared us for the worse and it was finally a pleasant surprise to find out that something was better than expected.