Tuesday, October 27, 2009

Motivation Part 2 Continued...


The next two months were a horrible period in our lives. Rach spent all day and all night at the hospital. After work I went straight to the hospital and we were typically there until 10:00 or 11:00. Poor Bella had so many tests ran and so many needle pokes and multiple blood transfusions. We theorize, and I say theorize because the hospital will not confirm, that she had a stroke at roughly 2 weeks of age. After that day of the stroke we saw a discernable difference in her behavior and an MRI confirmed our suspicions. Brain damage so severe that at one point a doctor referred to her brain as “Swiss cheese.” We were not sure to what affect it would have on her future. Sadness. Despair. Depression. Anger. These words described my feelings.

I mentioned multiple blood transfusions because of her bleeding disorder. Initially it was diagnosed as hypofibrinogenemia which mean she did not produce enough fibrinogen. So to dissolve the brain bleed, she was in need of additional fibrinogen and there was no way to get pure fibrinogen so she received a cryoprecipitate, which is a blood product that has many different blood plasmas pulled together. Whew, still with me. So in short, she received a blood transfusion of cryoprecipitate three times a week.

One vivid memory from the hospital was a good one. It was New Years Eve, and of course Rach and I were with Bella in her room and it was dark and quiet and at about 11:58 Bella woke up just long enough for us to kiss her and wish her a Happy New Year. There was a fireworks display nearby that we were able to see from her window. It was perfect. One of the best moments of my life.

Two months, tons of questions, no real answers. That pretty much sums up the grueling hospital experience. Rach had endured more hurt and pain that anyone should ever have to. I was an angry, emotional wreck. We found out that we were finally getting to go home. Bella was going to get to sleep in her crib, in her room, meet our dogs, and take a bath in our bathtub. Finally, what a relief. Her future, still uncertain, but for now we got to go home and experience being parents. We had a discharge meeting with the nurses where we were told that we would have to come back three times a week for blood transfusions to prevent bleeding and that Bella had such severe damage to her brain that she may never progress past the point of a two month old baby mentally. The anguish that one feels to actually hear that is torture, but there was a bright side, we did get to go home.

Rach had to quit working to take care of Bella which hurt us financially, but it had to be done. It was the only option. Also a plethora of therapists were going to come to the house to work with Bella on developmental progress and to continue to assess her. If you are keeping count we now had to go to the hospital three times a week, schedule therapists come to the house weekly, and continue our appointments with neurology and hematology. It was hectic, very hectic, and Rach had to take it on by herself, as I was so mad that I let it affect our relationship. I shut down and fell into depression. My baby girl was sick, my career was pitiful, and my marriage was suffering.

Some may wonder why I am writing such a painful memory, but I do not want to forget. I will never go back to what I was. I gained more and more weight during this period. I lost more and more confidence. I was at rock bottom, for several years, even after my son was born in June of 2008. My life, as I have written earlier, changed drastically whenever I made the choice to lose the weight and get healthy. This is part of my healing. I am going to be the husband and father that my family deserves. I am making incredible progress. Bella’s story for me is motivation. I will never shut myself off as I did then. Bella’s story is incredible and inspiring. I cannot wait to continue to share it…

Friday, October 23, 2009

Motivation Part 2 Continued


There we were on Monday at the hospital, no baby, no real idea what was going on. No clue if everything was alright. Talk about nerve racking. Stressful, traumatic, worrisome, tense, hectic, upsetting, painful were just some of the words to describe what was racing through the Rach and I at this time. I don’t remember Monday. Not one bit. I’m not sure what we did. I think I went home to get some things, I don’t know. I think Rach and I cried and questioned why this was happening. I had never had strong religious faith, but now what little faith I had was completely gone, replaced by anger. Anger that a supposed God would allow this to happen. Was I being punished?* Monday went by and I’m sure we probably received a call from the Children’s Hospital, I just cannot remember. It is a painful memory, one that has been blocked.

*To this day, I still feel this way. One of my issues not solved by weight loss. One that I need to confront, but I am just not ready to forgive yet. The thought, still makes me very angry. Something that I hope will start healing by telling this story.

I do know that Tuesday, Rachel was discharged from the hospital and we made the trip over to Children’s Mercy to see Bella. The hospital is very colorful and very welcoming as it should be as it is allegedly one of the best children’s hospitals in the nation. It is a very large hospital and we parked on level three of the underground parking garage. The yellow submarine level. I thought it was strange to name a parking level after a Beatles song about drugs, well maybe it’s about drugs, I guess that’s not a proven fact, but still. The hospital is huge and it took what seemed like a lifetime to get through the security station, through the foyer, down a long hall, down another long hall, up the elevator to level three (where the NICU was), and then to check in with the NICU desk, and then to scrub and sanitize our hands, and then finally to enter the actual NICU, easily the saddest place on Earth.

The NICU (Neonatal Intensive Care Unit) is where babies who are born with complications are kept. A lot of times they are kept in incubators because they are too small and most of the time there are machines hooked up to them with tubes and wires. Just an awful and saddening sight to behold. We finally made it to Bella’s spot on the floor. She looked ok, except for the band aids and the IV that they had inserted into her head. Maybe a little yellow from jaundice, but other than she was aware and looking around and we got to hold her and feed her and everything. Just like everything was ok.

We met with the Hemonc Doctor (Hemonc is short for Hematology-Oncology) and my first question was why oncology, did Bella have cancer? Dr. Neville assured us that no she did not have cancer, but that her blood was not clotting due to a lack in fibrinogen production. Fibrinogen is a protein found in our blood that is one the steps in the clotting process. Bella either 1) was not making it or 2) what she was making was defective. But at this time that was not concern number one. Remember when I told you that the second the Doctor who delivered Bella used a vacuum extraction, that our lives changed forever? When she used the vacuum to get Bella out, she caused trauma to the brain. Normally this would not do damage as the trauma would clot and be fine. But with Bella’s condition with her fibrinogen, the bleed continued and caused severe damage. Bella had brain damage. Any hope that we had disappeared instantly, replaced by even more fear and in my case anger.

Thursday, October 22, 2009

Motivation Part 2 Continued...


So here it was 6 weeks from our daughters due date, a chilly Saturday night. I remember that Dane Cook was hosting Saturday Night Live for the first time. Rach was lying in the hospital bed in labor, as she was induced by the Doctor. She was in pain all night and I cannot imagine what it was like for her to be so uncomfortable and scared. I tried to be there for her as best as I could. We were both nervous and unsure of really what was happening. It’s not something you can ever prepare for, no matter how many books you read or videos you watch, it’s just a nerve-racking event. Like I said Rach was in labor all night, then the morning came, and she was in labor all morning. They increased the Petosin, the drug that actually induces labor, and the contractions became more frequent. Finally, after many, many hours of pain, and a failed epidural, Rach was ready. Holy crap it was happening. I wish I could say that I remember everything in exact detail, but it was a blur of action. The Doctor, which I must remind you wasn’t our Doctor, was doing her thing and trying to get our baby out. It seemed to be taking forever. I would never say that panic was ever in the Doctors face, but I got the feeling that she was nervous that it was taking too long and I could all of a sudden feel the sense of urgency. Then the doc used a device known as a vacuum, and this was the moment that our lives changed forever. A vacuum extraction was needed to help get Bella out. When she came out I was scared to death, she was not crying initially, but soon after we heard whimpering then crying, so whew everything is ok. Bella weighed 4 pounds 8 ounces, which was super small but not life threatening. They whisked her away and the Doctors worked on Rach to get her all taken of. I honestly cannot say what happened in the next few hours. Bella was in the baby room, getting all of her newborn screenings done, I was talking with my family and Rach was recovering form a very difficult labor. Of course stupid me remembers that the Chiefs were playing the Broncos that day and we won. While Rach was resting I got to go into the baby room and see Bella. She was so tiny and precious. My hand would cover her entire body from the neck down. To me she was beautiful. She was perfect. My gosh, I fell in love. But, I was still a wreck, was I ready for this? Could I do this? A new responsibility that is more important than anything in my life. I would be lying if I didn’t say that I was full of doubt.
Rach finally got to see our Bella. She was so elated. I mean the happiest I have ever seen her. It’s hard to put into words how great of a mother Rachel is. She was from the moment she found out she was pregnant.
There was a problem though, a seemingly huge problem that no one told us. A problem that was so glaringly obvious on this perfect, precious, little girl. Our little girl. You see when they do newborn screening they use little pin pricks in the hands and feet to get blood for testing. Poor little Bella had tiny band aids around her hands and feet. When Rach touched them they instantly became blood stained. Bella was bleeding at a very rapid rate from just little needle sticks? What was wrong? No one knew. No one had a definitive answer. The Doctors hypothesized that she since she was premature she was just not clotting yet. Ok makes sense I guess? We were concerned and scared, but I know with 100% certainty that we did not know the magnitude or severity of this bleeding problem. No one did. It would fix itself, the body would eventually catch up they said. We stayed with Bella as long as we could. She did not get to come back into our room with us. She had to stay in the NICU (Neonatal Intensive Care Unit) for observation.
So we went back to our room, watched the Transiberian Orchestra on PBS and talked about everything. We expressed concern and confusion over what was happening, but we were still confident that everything was under control and we fell asleep.
I’m not sure of the time, but we were both woken up by the sound of people coming into our room. Bella was with them in one of those little carts that you see the preemies in. You know with the holes for peoples arms to go through. Two of the ladies were dressed very differently. They honestly looked like astronauts in their suits. This was very bizarre to wake up to in the middle of night. I was very disorientated and confused. They went on to tell us that Bella had continued to bleed out and needed to be transported by helicopter to the children’s hospital. What? So these ladies dressed in space suits are taking Bella, by helicopter to Children’s Mercy Hospital? What was happening? Panic set in for both of us, but they assured Rach and I that this was just precautionary and that Children’s Mercy was better suited to handle Bella’s care. So we said our goodbyes to Bella, and off she went for her first ever helicopter ride. Rach and I lay beside each other and I’m not even sure what emotion to use here. We were motionless and speechless and downright scared to death. We had no idea what was going on. We felt so helpless. Fear overcame us. Obviously everything wasn’t alright. Something major was wrong. Several hours passed and then the phone rang. I answered and the lady on the other end introduced herself as a Hematology-Oncology Doctor, I cannot remember her name, but what she said chills me to the bone to this very day.
She said… “If your daughter doesn’t receive a complete blood transfusion, she is going to die.”…

Wednesday, October 21, 2009

Motivation Part 2


It was the perfect spring day outside. The grass was green, the weather was great, and like always I had high hopes for the Royals. We had literally just signed a contract and wrote our earnest money check to buy our “next step” house. We were at a point in our lives where we felt somewhat comfortable. We were ready to take our lives to the next level. Start a family, you know, finally become a grown-up. We had been trying to get pregnant for a few weeks.*

*Okay am I the only one that cannot stop thinking about all the bumping uglies people are doing when they say they are “trying to get pregnant?” Maybe I’m in the minority, but I doubt it.

And on that perfect spring day Rachel had been having heartburn which I found odd, seeing that she had never had heartburn before and I told her, I bet you’re pregnant. I had many thoughts run through my head when that that little pee stick showed a blue plus sign confirming my pregnancy theory. My very first thoughts were excitement, happiness, and pure joy. Then slowly but surely doubt crept in as I wasn’t sure how this was going to work. I was nervous. I was scared. I was uncertain of myself. As we all know life moves on whether we are ready or not so…

We moved into our new house and Rachel, (who is the most beautiful pregnant person I have ever seen, she just glows and is so dang cute) was able to transfer to a management position at a new bank branch so we were alright. Except that I couldn’t keep my job. Which is another story altogether. Let’s just say that my five year career in the mortgage industry had very few ups and lots and lots of downs. I worked for many companies as a loan officer and was never successful at any of them. Quite frankly I stunk. I was lazy, unmotivated, and not driven whatsoever. Not a very good recipe for a salesman.

This obviously led to undue stress on Rachel and me, and with a new mortgage payment over double of our previous one, it was imperative that I got my act together. But I didn’t. You see I was over-weight, not at my heaviest, but still morbidly obese. I was depressed and unable to handle my feelings. I gained more weight and then some more. Pregnancy weight…right. Wrong, through my immature actions, selfishness, and inability to hold a job I have always felt guilty and responsible for what was to come. If I would have “shaped up” and got my crap together, who knows? Maybe there would have been less stress, maybe then things would have turned out different? Just maybe.

In September, Rachel starting suffering from pre-eclampsia, a condition that includes high blood pressure and swelling of hands, feet, and ankles. And by November the condition had worsened and Rachel was put on bed rest. Of course being the wonderful husband I was (this would be the perfect case for a sarcasm font, hey Bill Gates, get on that would ya?) I failed at yet another mortgage job and somehow suckered another company into hiring me. Well the new company held training in St Louis, MO so when my pre-eclampsic, 7 month pregnant wife needed me most to care for her while she was on bed rest, I was gone. Way to go, Joe. Way to go.

I was gone a week for training and then came back for the weekend to go to an appointment to make sure everything was ok. Our baby’s due date was in late January but here we were at a Doctors appointment on a Saturday, being told by a Doctor (not OUR Doctor mind you, he was out of town, well of course he was) that we were not leaving the hospital without a baby. Gulp! This is too early. We are not ready. Oh lord, what am I gonna do?

Well she was wrong, we did leave the hospital without a baby, our journey had just begun…To be continued…

Friday, October 16, 2009

Motivation Part 1

I'm back and unfortunately I've gained 50 pounds...I kid, I kid, bad joke? Actually I'm finally approaching my drivers license weight. The one that I had listed 10 years ago when i was 19. That post is coming.. stay tuned.

In the mean time I took on a part time job as a Wait Assistant * at Buca di Beppo two weeks ago. I don’t mind the job, not one bit. It is fast paced and I am constantly moving and quite frankly I feel like I get a decent workout when I work a shift. For those that don't know Buca di Beppo is a wonderful Italian restaurant that serves the biggest family style portions I have ever seen. And it is good. I mean really good.

*Wait Assistant is a fancy term for busboy. Yep I’m a busboy. Talk about a slice of humble pie. But hey apparently I wasn’t qualified to be a server. You know, it’s too complicated for someone with no experience. They are right I’m not qualified to be a server, but I am qualified to be their manager… in due time…

Well as soon as I started, my mother-in-law, (who to be fair has done a lot for Rach and I over the years, but her and I do not necessarily have the greatest relationship) told my wife “oh Rach, you know he’s going to gain back all his weight, being around all that food.”

Now to me, that is motivation.