On July 14th 1999, I went into the doctors office to confirm my pregnancy. I had gone through two previous miscarriages, so I waited until I was in my thirteenth week before even going in. In my first miscarriage, I lost the baby at eleven and a half weeks and having to be rushed to emergency because I was hemorrhaging. The second miscarriage happened about six months later and I lost that baby at eight and a half weeks. So with this pregnancy, I was a little gun shy to go to the doctors and get my hopes up for a third time. They did confirm that I was pregnant and that all seemed to be fine. We were in the process of trying to get moved from California to Illinois, so the O.B. scheduled an ultra sound the week before I moved so that I would be able to take a full set of records with me to the new doctor. Every thing seemed to be fine at that ultra sound, so we were none the wiser.
Once in Illinois and establishing an O.B., I asked about if they would be doing another ultra sound, since I had one done so early in my pregnancy and they stated that no they wouldn't unless it seemed medically necessary, because the insurance would only allow one. So, I didn't think anymore of it at the time. Each doctor visit comes and goes and I was doing just fine. The weight gain is appropriate, the stomach growth is appropriate and so on. The week before I am due to deliver, everything changed.
At my doctor visit, the doctor measures my tummy and tells me that it measures about four inches less than the week before and wants me to have an ultra sound done immediately to determine why and if anything is going wrong with the baby. So I go in the next day and they do an ultra sound. everything seems fine with the amniotic fluid and there is no leakage that they were concerned about. The ultra sound tech mentions nothing out of the ordinary and finishes up. I am asked to wait in the doctors office so that she could report what the ultra sound found. The doctor comes in and proceeds to tell me that they aren't sure, but it appears that the baby has an omphalecele. She continues by trying to explain that it is a bulge by the umbilical cord where the muscle tissue fails to grow and the skin creates a pocket and the internal organs fall into that pocket. I asked her if it was similar to a hernia and she said that it was similar. Nothing was ever mentioned about the possibility of exstrophy. I asked the doctor what needed to be done, such as inducing my labor, having a cesarean or what. She stated that since there didn't appear to be any exposed organs involved that they would just let me go and deliver normal. So I went home thinking that my baby had something pretty minor and fixable. It upset me to think that my child was going to be born with a problem, but I had no idea just what the problem was and what the extent was.
I went into labor on January 23rd at around midnight. The contractions were about every seven minutes apart and the hospital was about twenty minutes away. I had delivered my first child in four and a half hours, so they were concerned about a fast delivery and had me come in. When I went in, I informed the staff as to what the ultra sound showed and they made sure that a specialist was called in to look at the baby when it was born. I didn't end up delivering until ten nineteen a.m. on January 24th. With about four good, hard pushes, the baby was out and we were informed that we had a baby boy. I was so exited to have a boy, because our first child was a girl. when the doctor lifted him up for my husband and I to see, our eyes immediately went to this large, purplish bulge by the umbilical cord. The nursing staff immediately took our son and started cleaning him up and the specialist was called in. I had no idea what was going on because I was being stitched up. In realizing that something was drastically wrong, the rush of hormones, and along with being tired, I broke down and sobbed. What was wrong with my little gift from God? In seeing that I was upset, the O.B. started telling me what was wrong with my son, while he was stitching me up. He said that my son was born with what was called, bladder exstrophy, and that meant that the bladder was outside the abdomen wall.
Well, I had never heard of this condition and I thought we were the only persons in the world with a child born with this condition. We were informed that he would need immediate surgery and the hospital that we were at was not a level 3 hospital and our son would need to be transferred as soon as possible. We needed to decide where to send him. Well, since we had just moved to Illinois, we had no idea which hospital would be the best, let alone the name of a good surgeon. We were told of three choices, so we started by calling our insurance to see which one was in the network. By process of elimination, we ended up going to Lutheran General Children's Hospital in Park Ridge, Illinois and his surgeon was Dr. Suzanne Flom. One of the choices was not covered by our insurance. Another, had a pediatric surgeon who didn't handle exstrophy patients. So it was pretty laid out as to where we were to go to. I still think it was by the grace of God that we ended up at Lutheran's. We can not say enough good things about the hospital staff and our surgeon. Within three hours of delivery, our son was being transported. I was able to go to the nursery and hold my son for about half an hour before he was to leave. It was a very sad time for me. I felt cheated and I felt my son was cheated. I just held him, stroked his little head, and prayed that God would lay his healing hands upon my son and make him better. I also prayed for strength to help me do the best for him and to be a good steward for my son's best interest. Then it was time for him to leave.
I could have stayed in the hospital for two days according to what the insurance would pay for. Well, there was no way that I was going to spend one extra minute in that hospital, away from my son, so I opted to be released the next day. With my son gone and me still stuck in the hospital, I was miserable. Every time I would hear a baby cry or a doting parent or family and friends coming to visit another patient, I would cry. It was a long night. I would hear a baby cry and instinctively wake up thinking it was my child. Only to realize that my son was far away from me and I could not be there for him when he would cry. The next day, I had to try to get all set up for pumping, so that I could have breast milk started for my son. I finally got all set up and was released around eleven thirty a.m. I came home long enough to take our daughter to school and then my husband and I were off to go and see our son.
By the time we got to Lutheran's, our son had been out of surgery for a couple of hours. He was twenty hours old when they performed the initial surgery to put the bladder back into the abdomen wall. I was so emotional at first sight of our son. He had so many tubes and IV's in him, he looked so sickly. I was afraid to touch him. The staff was so helpful, friendly, and informative, that they put all our worries at ease right away. The surgeon, Dr. Flom, came in and told us that everything went well and that his bladder was a good, normal size. The surgery went well, and she went on to explain exactly what she did. She even drew a diagram and broke everything down into laymen terms so that we clearly understood what she did and why. She was very confident with the surgery and that helped to make us feel confident as well. At the time of putting the bladder back, she also closed the pelvic bone, by doing an "X" stitch to pull them together. There was an orthopedic surgeon looking on to make sure that this was done properly. In his reporting to us, he seemed very confident that that would work. I didn't get to hold my son for the first three or four days, and then, they finally let me hold him and rock him. He was placed on a pillow and then put on my lap. After the first week, they tried to start introducing him to my breast milk. His system rejected it and they had to put in a central line IV catheter. Since they had to put him under anesthesia, we had to consent. I was so upset that my little boy was going to have to undergo, yet another traumatic procedure. The procedure went without any problems and he was on that IV for another three days, before they tried to reintroduce the breast milk to him again. This time, he took it without any complications. I was so exited, because this meant that his coming home was in the near future. We were told that once he was completely on breast milk and totally off the IV feeding, he could go home.
The doctor told us that he would release Robert on the 5th of February as long as everything kept going well for him. The 5th of February was the day my husband was due to go on a business trip to Athens Greece. It turned out that Robert came home on the 6th instead. Boy did my life change!! I was fortunate enough to only have him come home with a superpubic catheter. I simply double diapered him. I was so glad to finally have my little bundle of joy home with me!! I found myself being over cautious and having him sleep with me, just so I could hear him breath. Once my husband got home from his trip, I moved into the nursery, just to be sure that nothing was going to happen to him. My husband was gone for thirteen days and I was home alone with our newborn and a four year old. It was an adjustment, to say the least. While changing his diaper, I noticed a bulge on both sides of his penis and so I was a little concerned. I had an appointment with Dr. Flom and so I addressed it with her. She said that it was an inguinal hernia and had to be repaired. She sent me to see another surgeon, Dr. Loeff, who agreed that that was what it was and so we scheduled a surgery time. Robert was exactly one month old when they did the hernia surgery. While Dr. Loeff was doing the hernia repair, Dr. Flom went in and removed a stint that was hooked up to his kidney. All this was done as an outpatient surgery, so I was able to bring him home the same day.
Life has been pretty normal since that surgery. He has had one more visit with Dr. Flom and she scheduled an ultra sound of his bladder and kidneys. She was so exited to report that the ultra sound showed a full bladder and that it was acting as a reservoir for the urine. The kidneys are still dealing with reflux, but that is to be expected according to her. The next surgery, which will be the epispadia surgery, we are hoping to have done in October of 2000. Dr. Flom performs a technique pioneered by a Dr. Reda out of New York, and she is hoping to have him assist her in the surgery if possible. Other than that, Robert is growing like a weed and every bit a boy. He is about thirteen pounds and over twenty four inches long. We feel so blessed that God has given us the chance to have a son and be able to pass on my husbands name sake. I will keep everyone up to date as new challenges come our way.
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