Week One

Joshua's Journal

Week 1 Journal as recounted by Joe

FEBRUARY 4, 1999 9:38pm - The first time I saw Joshua, he had blood pouring out of his mouth and he was a pale blue. I thought he was dead, he wasn't moving and there were no signs of life at all. I remember the nurses and doctors screaming at each other as they suctioned him and pounded his back to get him to breathe. I glanced at Jess and thought that she could see as well, and in a flash my heart sank as I wondered what she was thinking. It was at that point I almost passed out. All of a sudden I heard Joshua start screaming and he came to life. The nurse held him up for us to see briefly, and then he was put in a plastic incubator and rushed away.

I was unable to see Joshua until just after midnight. I went to the Neonatal Intensive Care Unit (NICU) where I scrubbed up and signed in for my first visit with Josh. Being in the NICU is a unique experience. The first time you go in, they try to "prepare" you for the environment. When your child is in there, hooked up to a bunch of machines, I'm not sure if you can really be prepared. The best thing I could say about the NICU, after Josh spending almost 3 months there, is that the staff is unbelievable. The nurses there are incredible people. They are very supportive and helpful, but most of all, they really care about the babies there.

Joshua was sleeping with an oxygen hood on. The nurse told me it was to help him breathe. He looked good other than being a little jaundiced. After my visit with Josh, I went back to see Jess, it was after 2am. We had been up for over 40 hours. I told her how Josh looked and we talked about how this whole experience had been so trying, but were glad it was over. We had no idea what was in front of us.

FEBRUARY 5 - Clearly, this was the most difficult day in my life. In Jess' room we received a visit from Dr. Coyle (Neonatologist). She said that they were conducting some tests on Josh and that he had to be intibated over night (put on an oxygen respirator). She would come and update us after the tests. We had a chance to visit him for a little while, it was the first time Jess really had a chance to see him. Before she even got a look at him, another doctor cornered her and told her that Joshua had some issues with his brain. It all happened so fast, we really didn't know what to think.

The afternoon came and the news hit us like a freight train. Dr. Coyle came into the room with another Doctor, Dr. Kurkchubasche who is a Pediatric Surgeon, and a Social Worker. We had been through this kind of thing before. They don't send this many people in without bad news. Dr. Coyle explained that there were some serious issues with Josh. She explained that his head was well undersized and that an ultrasound of the brain indicated smoothing of the brain itself. The only thing they knew at that time, was that Joshua could be facing some serious neurological problems. The next item was his intestines. A dye study had indicated that there was some type of blockage past his stomach. Dr. K explained that this usually indicates an intestinal atresia (separation) and that it was easily repaired, but had to be done right away. Later in the day, Dr. Caldamone came in to tell us that an ultrasound showed that Joshua's kidney was becoming more dilated and they needed to watch it carefully, however they needed to repair his intestines first.

Dr. K scheduled surgery for late that night. She told Jess and I not to worry too much about this, and that she had a patient once who had 8 of these atresias that they were able to repair. I accompanied Josh from the NICU to RI Hospital via the tunnels that connect the hospitals. I remember seeing people look at Josh and I and not knowing what to say and where to look. It was a surreal experience. After a final briefing, I was off to Jess' room to await word on the surgery. It was expected to take a couple of hours. A little after 1 am, (over 5 hours into the surgery) we got a call that he had "multiple" atresias and that things were going well, but it was going to take a while. With 4 hours of sleep under my belt in 70+ hours, I decided to head home. Some time in the early morning, Dr. K stopped by to see Jess. Joshua had 8 atresias that they had to repair. Leave it to Josh to tie a record.

FEBRUARY 6 - - To see Joshua after his surgery was so heartbreaking. He had all these tubes coming from his abdomen, a number of IVs and was still on oxygen. He seemed to be doing OK, however. Jess and I spent much of the day absorbing all the information from the day before. We talked to the different doctors and nurses in the NICU to get as much of an understanding of all his issues as we could. The whole time, we knew and expected that he would recover and be fine. In the mean time, all around the hospital, while Jess and I sat in her room and comforted each other, was the joy of new babies and the excitement of those leaving the hospital to bring their babies home. I remember once thinking why us, why did that happen to us. I also quickly realized that its thoughts like that which can make you crazy. If you start to think about what the future is going to be like, you can get overwhelmed very quickly. There was no use in thinking about anything other than to take things one step at a time.

FEBRUARY 7 - - The doctors had expected Joshua to have awoken from his surgery, but he hadn't. He was still in the same comatose state since Friday night. We had a chance to speak to Dr. K at length about what Joshua faced with his intestinal issues. She mentioned that her other patient was eating normally at about 1 year, so we shouldn't have to worry about him being on an IV for life. It's funny how certain statements jog thoughts when you are going through this type of experience. A year! In my mind, Joshua had already been through enough, not to mention living off an IV. But at this point, we had to take it one day at a time.

FEBRUARY 8 - - This was probably the second hardest day in my life! Jess was being released in the morning, so we went to see Joshua together before taking her home. Joshua was still not awake. Dr. Coyle felt it was time for an MRI on his brain to help make a determination of how the structure was. It was scheduled for late Monday / early Tuesday morning. It was strange visiting Josh this particular day. You could tell that people didn't expect him to live. We were treated with kid gloves and even though there were plenty of sick babies in the NICU, we were being handled differently.

As we visited with him, a number of doctors, nurses and social workers surrounded us. Dr. Coyle explained that she thought Josh may never wake up, that he could be in this state for some time, or that he would not survive much longer. Jess and I had already talked and knew that if he didn't make it, it would be because it was the best thing for him. Our faith had been invaluable in getting us through this and we knew we needed to keep it now. She very gently and carefully put together a sentence that I can't even remember, but I do remember the point. Basically, do we want to keep Josh on life support. I don't know how these doctors can do it. I can't imagine having to tell people this kind of news. I truly have a greater appreciation for what it takes to be a doctor.

Jess and I knew the answer to this, we are always on the same page when it comes to stuff like this. No, we would not let him live a life where his only existence was that he was kept alive by these machines with no other signs of life. We would wait and see how things go for a few days and then decide to take him off the machines if things weren't getting better.

As we left the hospital, I couldn't help notice a family gathered in the lobby excited about bringing their new baby home. I felt so helpless. Here was a couple filled with joy in bringing home there baby, and we haven't even been able to hold our son yet and dealing the possibility of losing him. That ride home was horrible, both Jess and I cried, but said very little. We spent most of the day reflecting on things and trying to come to terms with what was going on. We went through just about every emotion you can imagine, sadness, anger, and frustration. Looking back, I didn't realize at the time how crucial that was for us to really get a grip on the situation we found ourselves in. We were able to get our feelings out and prepare to keep moving forward and be strong for Joshua.

FEBRUARY 9 - - In what would be the first day in a 2 1/2 month routine of heading to the Women and Infants NICU to visit Josh, I was eager to get to the hospital. Jess and I knew that Joshua was going to get better. When we got there it was like no feeling I could explain. Not only did Joshua wake up, he managed to squirm out of his breathing tube. It was the first sign of what a fighter he is. I felt so bad that I had stood by his bedside a day earlier trying to make guesses whether he would live or die. But that's Joshua, even though he was clinging to life, he would help give us the strength to keep going. He was starting to become the talk of the NICU. He had his own little area away from everyone else, and his own nurse 24 hours a day (Thank God for insurance).

We had a meeting in the morning of all of Joshua's doctors. It was kind of intimidating to go into the room. All the doctor's had already assembled. It was like walking into an inquisition. I'll never forget the sight, all these doctors and nurses, and 2 empty chairs with a box of tissues in front of them. They didn't know how we were. They didn't know that Joshua had given us a battle cry to be strong. They didn't know how resolved we were that things were going to be OK. The neurologist (Dr. Brown) spoke first. The MRI on Joshua's brain was inconclusive for Lissencephaly (smooth brain), but that he definitely had Microcephaly (small brain). He said that we may want to consider not pursuing any more treatments for Josh because he could have "neurological devastation", but we wouldn't know for sure until he started to develop. We had just seen how Josh was fighting, and there was no way we would give up now. My response came so clearly and quickly without reaction, "Right now Joshua is fighting for his life, and we are going to fight right along with him."

We got the run down of medical concerns regarding Josh and recapped all the things they looked into. We went through the possible conditions of his brain, what had happened to his intestines, and what was going on with his kidneys. Dr. K also told us that Josh has Short Bowel Syndrome, with about half the length of normal intestines. We also found out that a heart murmur was picked up so a cardiologist had given Josh an echocardiogram to see how his heart was. They found 2 defects, an ASD and PDA. The PDA was the concern. It was restricting the blood flow to Josh's body, instead sending too much blood to his lungs. There are medications to treat this, but they also have a side effect of damaging the kidneys. At this time, Josh had one kidney that was blocked, and we weren't sure how well the other one was working. The doctors felt that trying the medication was the best thing.

They also told us that they tried to match up all of Josh's conditions with some type of syndrome, but they couldn't locate any current, or previous set of circumstances. Like I said before, leave it to Josh. Anyway, they wanted to repeat the chromosome and genetic tests to see if they missed anything. We would later find out that nothing was detected as was the case before.

The night before the meeting, I awoke with a scary question of how much our insurance would cover for all these medical expenses. Of course we would do anything to get Josh the best medical attention, but this was the first time it sunk in that if our insurance didn't cover everything, we would have financial problems to think about as well. Luckily at the meeting, our HMO representative told us that we no spending limit, so all this would be covered by our insurance. All I can say is that with all the wealth in our country, no one should ever have to worry about paying for, or affording medical care when faced with any crisis. The crisis itself is hard enough.

FEBRUARY 10 - - Our visit with Josh was interrupted by news that the medicine for his heart didn't yield good results. There was no choice but to have surgery. So, a day after he woke up, Joshua was put to sleep so that he could have heart surgery. They did it right there in the NICU. They closed off the whole area and sent us to a room where we could wait. It was only about an hour after the surgery started that Dr. Hopkins, who performed the surgery, came out to tell us that everything went well. He explained that he put 2 titanium clips in Josh's heart to correct the improper flow of blood.

When we went in to see Joshua, I couldn't even express how I felt. From his earlier surgery, he had a tube from his lower intestines (J tube), a tube from his upper intestines (D tube), a stomach tube (G tube), a central IV line (broviac) in his upper leg, and a tube from his nose into his stomach. Now he was back on the respirator, so he had that tube in his mouth and with his heart surgery, he now had a chest tube.

FEBRUARY 12 - - Joshua was beginning to wake up when we saw him. It had been a week since the day we were bombarded with news of all the problems Joshua had. It seemed like an eternity. So much had happened in such a short period of time. But it was a new day, and time for Joshua to take one more step. His right kidney was becoming a concern. It was very dilated, but he was too weak for another surgery. The doctors decided to put a nephrostomy tube to help alleviate the pressure on the kidney. They inserted a tube into Josh's right kidney while he was under a continuous X-ray. The tube connected to a small bag where the urine collected and could be emptied. So Josh added another tube to his collection. The poor guy, he had his entire stomach bandaged from his first surgery, tubes from the front, both sides and his back, bandages on his back from heart surgery and now a tube from his right side draining his kidney.

This first week of Joshua's life was so difficult, but it would help bring the 3 of us together so close and give us all the strength to keep going. He was now the talk of the hospital. We had all types of visitors that came to see him, nurses, doctors, and all kinds of people we didn't know, but they all knew Josh. It was unbelievable to watch doctors who saw all types of things, amazed by Joshua. People started to call him the miracle baby. The other thing that was strange was how people watched Jess and I. It was like they we were waiting for us to freak out at any time. It was too late for that. We knew that if Joshua could get through everything he did, so could we!

A lot happened that first week, but we weren't done yet, another unexpected twist was a couple days away. To read about it, go to the NICU journal pages.

email us at jess@joshuasjournal.com or ajcollette@yahoo.com

hits on this site since January 2000. This page was last updated on 09/14/07.