Stop the World, I want off!

I think, at times in our lives, all of us want to stop the world, to go back in time, or even just to breath and have the time and maybe even the mental capacity to figure out what is going on or what has gone wrong. I have had that moment- several of those moments, in the past 72 hours.

On Tuesday morning there was something funny about the Baby's Diaper. From the outside it looked reddish brown, I was expecting a very messy and smelly diaper. But when I got the diaper off, there was no mess, just urine…..just reddish brown urine. The warning buzzer went off in my head- I called the Urologists office and left a message. A few minutes later I got a call back from the nurse. There was no active bleeding and he probably just had a clot that came loose and colored his urine, there was no need to worry. I still worried, but went on with our day, after all, there was no active bleeding, and he looked and acted fine.

We had a pretty good day on Tuesday, that is until 4:30 when the baby seemed a little fussy- he was hungry, he also hadn’t been changed in a little while and so I decided to be a good mother and change him before I fed him. Except for that first diaper of the day, all the other diapers had been normal, and I was Freaked Out to see blood coming from my son. He wasn’t peeing, but there was a nice steady flow of blood coming from where the urine comes from. It wasn’t coming from the surgical incision; it was coming from somewhere inside.

I picked him up, and ran out of my house and down the street to a nurse who lives close by. She was home, and I was able to explain to her that the baby had surgery a week before and was now bleeding. In the time it took to explain his situation he stopped bleeding. She got out a nursing book but couldn’t find anything specific about bleeding after a Hypospadias Repair. She did her best to reassure me that he had not bleed too much and that the fact that it stopped on its own was a good sign. She encouraged me to call the doctors office again. By then it was 5 pm, the office was closed and so I spoke to the resident on call. He told me that he understood why I was scared and explained a few reasons why he would bleed and why he may have had blood in his urine. He told me how to apply pressure, should the bleeding happen again. If bleeding lasted longer than 10 minutes we should bring him to the hospital. The baby wasn’t acting sick, or in pain, in fact he was his active bubbly self. I wanted to take him to the hospital, despite all that I had been told, despite the fact that he seemed fine. I was scared and all I could think of was the fact that my baby had been bleeding.

It happened again after Ken got home from work. We applied pressure and it stopped. I still felt uneasy. We prayed, several times and came to the conclusion that if he bled overnight or even if he had blood in his urine over night, we would take him to the doctor on Wednesday. He was acting quite fussy at 6, the resident had explained that his stitches may be pulling and I remembered my stitches pulling and that being quite painful and so I gave him some ibuprofen, I thought it was good that he hadn’t needed more than one dose every 24 to 36 hours over the previous 3 days, he was almost completely healed from the surgery. And so, the baby was put to bed around 7.

I cried when we were going to bed that night. I just didn’t know what to do. He couldn’t talk, what if he bled and passed out, or worse over night. I did fall asleep. At 2:30 I heard the baby cry, I had decided that this night was different, I wouldn’t let him just go back to sleep, anytime he cried I was going to check on him, and check his diaper.

I pulled him out of bed, in the dim light I didn’t notice anything wrong. I did notice something when I got him to his changing table. His Pajamas looked darker, I flipped on the light. His Pajamas were bloody, front and back from his abdomen to his thighs. I screamed for Ken, and quickly unzipped the pajamas, the diaper was red, from the outside, when I opened the diaper it was soaked, completely soaked with blood. Not Bloody Urine, Blood. I told Ken that I felt we needed to get the baby to the emergency room immediately, he agreed.

I had the presence of mind to put on a bra, and then I noticed that the baby also looked dehydrated, his little mouth was dry, his lips were so dry they were crinkly. Ken was able to get the diaper bag, he made sure we had all the proper insurance documents, made sure I had a coat and then he drove us to the nearest emergency room that took our insurance. (I noticed hours later that Ken also had the presence of mind to put jeans on- making him look like a normal person- I on the other hand had gone to bed in a Turquoise shirt and a pair of 10 year old navy blue, green and red plaid flannel pajama pants that were 3 inches too short).

It seemed like it took forever to get there, I sat in the back holding the baby’s hand, I told myself that as long as he gripped my fingers he was fine, so anytime he let go, I touched his face and neck to wake him up, he would then grab my fingers. The ER was under construction and we had no idea where to park, the only entrance was the Ambulance entrance and so Ken stopped and let me out with the baby, I ran in and found a nurse. I was cry so much that she couldn’t understand what I was saying. “My baby is bleeding, he had surgery and now he is bleeding” “He is having trouble breathing” “No, not Breathing, he is Bleeding” “He’s not Breathing” I was clutching the baby too me, so I un-clutched a little and she saw his pajamas and understood, “He’s Bleeding” At that point we had 2 nurses a Doctor and a nursing student and a few other people, trying to pull me into two different rooms. They finally agreed on which room was best, got him on the bed, took off his clothes and went to work. I stood there crying and answering questions.

The doctor estimated that the baby's diaper held about a cup of blood. When babies are born they only have about a cup of blood. I couldn’t find anything on the Internet about older babies, but I plan to find out- because I am very interested. Adults have about 10 pints of blood- (20 cups?) so it makes sense that our baby would have somewhere between ¼- ½ the amount of blood that we have since he is ¼- ½ the size of an adult. So a cup of blood seemed pretty significant to me.

It took just about everyone in the ER to put an IV in. It was so hard to find a vein in his chubby limbs that they finally decided to put the IV in his neck. They gave him some fluids and his heart rate (which had been up around 200) and his blood pressure (which had been quite low) stabilized. By this time he had stopped bleeding and Primary Children’s Medical Center was called and they agreed to accept him, so Baby and I got to ride in an Ambulance. It was interesting; they strapped his car seat the ambulances gurney. Safety- First and Always.

Once at Primary Children’s his IV was changed to a more suitable location. (Ken and I both agreed that should we ever need to take a child to the ER, it would be worth it to take them to a Children’s Hospital, as they specialize and have less problems with small veins.) We talked to the ER Physician, to the Resident Urologist, and then we waited. About 5 or 6 hours later we were admitted to the RTU (Rapid Treatment Unit) as a 23-hour observation. We learned quickly that observation means just that- the baby was going to be observed. They tried to run a few blood tests- the Hematocrit was run twice each day, it went down from 23 to 19 and then went back up to 20! I asked what normal was…..30, but at least he had stabilized. They also wanted to run tests for Hemophilia- because he was bleeding and he is a boy. But it became way to apparent that he was not a hemophiliac when the blood they were attempting to get into the test tubes, clotted, even before they could get it all into the tube. The doctors were told that they were barking up the wrong tree, and a new test was ordered, a test that would see how long he would bleed for before the clotting factors kicked in (or something like that), the IV Team was quick enough to get good blood for the test, but it couldn’t be run because his Hematocrit was too low. Night came, Ken went home and I slept on the parents bed in the baby's room, the next morning when they tried to draw blood for this new test, the blood clotted too fast again and so the test could not be run.

(Wild Baby- in his cage)

(Ken had to leave to go to a Doctors appointment of his own, for the past few days we have thought that Ken had his first cold sores- but the sores were spreading and he was feeling sick. The doctor said that the sores were not cold sores- they were either a Staph infection or a Strep infection, they took cultures and gave him a powerful antibiotic and some ointments. We both thought- What more could happen to our family this week. I wanted to cry. Now back to the baby.)

The Urologists were stumped; the surgical site looked great and there was no reason to believe that the bleeding was related to the surgery other than the fact that the blood was coming from his urethra. After 32 hours in the RTU we finally were able to meet with two hematologists, both had the same opinions. 1- the Bleed was most likely caused by Ibuprofen use in a child with some type of blood disorder. 2- the blood disorder to test for first would be von Willebrand’s Disease. As they told us more and more about von Willebrand’s I could see its symptoms in my family.

According to Web MD
“Von Willebrand's disease is a bleeding disorder in which a protein in your body's blood system is missing or does not work well. The protein is called von Willebrand factor. If the von Willebrand factor is working properly, it helps your blood clot. Clotting stops the bleeding when you are cut or injured.
The von Willebrand factor usually carries another blood-clotting protein called factor VIII. If you have von Willebrand's disease, the two proteins may not attach properly to each other. Your blood will not clot as well as it should.
What causes von Willebrand's disease?
Von Willebrand's disease usually is passed down through families. It is the most common bleeding disorder present at birth (congenital)1, but most cases are mild. About 1% of people may inherit this disease.3 If one parent has von Willebrand's disease, a child has a 50% chance of having the condition.1 Men and women are equally likely to have von Willebrand's disease.
What are the symptoms?
Excessive bleeding is the main symptom of von Willebrand's disease. The severity of the condition varies from person to person, even within the same family.1 Over half of all women with von Willebrand's disease have very heavy menstrual bleeding. Other symptoms include frequent nosebleeds and heavy bleeding after injury or surgery.1
Von Willebrand's disease causes symptoms similar to the bleeding disorder hemophilia.”



Hmmm. Yep, those symptoms pretty much match my family, at least as far as menstrual bleeding and nosebleeds go.



I felt much better about taking baby home after talking to the Hematologists, I had lived in fear for 2 days that nothing would happen at the hospital, we would be sent home with tons of questions, and baby would wake up bloody again. But armed with the knowledge that Ibuprofen may have caused the bleeding and with the hope that we would be able to find out why, I was ready to go home. We left the hospital a little after 6 pm.

(My two patients, upon returning home last night, who looks sicker?)

So, On Monday, Baby gets to go to his Pediatrician to have 3 more blood tests run, the Hematocrit, the Von Willebrand Pannel and a Platelet Function Assay (I think this is the second test they tried to run at the hospital). Hopefully the blood won’t clot. Then next week we get to go see the Hematologist and start down the road of figuring out what really happened and learning how to prevent it in the future.


We are starting to see the Silver Lining around the dark clouds that have been hovering over us the past few days. We found the baby in time to get him help, after he was rehydrated he never even acted sick, he was all smiles and giggles for his nurses (as long as no one with a needle came within 10 feet). If he tests positive for von Willebrand’s, then I and maybe other members of my family will get tested, and maybe then we can get treated for bad menstrual periods and be better prepared for complications in future surgeries or childbirths. If positive, we would also need to test our future children as soon as possible after they are born, as they would have about a 50% chance of having the disease also. Ken realized last night that if we had not had to reschedule his surgery from earlier in the month, we would most likely have had to miss his younger brother's wedding. Finally, we have so many family and friends who prayed and helped, (Thanks so much to my sister who brought me clothes that first day- I felt very funny in my ugly pajamas, especially after I realized my shirt had baby's blood on it, those pajamas may be going in the trash.) so back to the original thought- we felt the love and prayers of all those who knew what was going on, and it has also been interesting to see how many friends who didn’t know what was going on, suddenly had us on their minds and didn’t know why. Thank You.


On a complete side note- the Baby signed for the first time while we were in the hospital. I was feeding him peaches and a muffin and he kept opening and closing his hand. It took me a few minutes to realize he was also staring at the bottle that was on the table near us, and so I asked him “Do you want milk? And I made the sign for milk and pointed to the bottle, and he made the sign again, and smiled. He drank that bottle and then another, it was a sweet moment, peaches and muffins are good, but my baby wanted milk, and he told me!

(this is a picture of baby that I took this morning, with his bear that the hospital gave him)