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Jessica Bracy

March 2010

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TOO MUCH

Oct 27, 2005 09:27am (EST)

I feel like that one friend we all have that never has anything positive to say, everytime she calls she is sharing some kind of drama. I don't like being that friend, I am not used to being that friend...I can't figure out what is going on these days.

We were on the way to Disney on Ice last night, I had bought the tickets months ago and Kobe's doctor thought it would be a good diversion for him so we attempted to go. He has felt pretty awful the last few days, his tummy is extended and he just hurts. He is on pain meds every 4 hours and mostly wants to sleep. On the way to the event I called a good friend to check on her husband who just had back surgery, we updated each other and then her voice got really quiet and she informed me that friends of ours were killed the day before in a car accident, the whole family.

I can't understand what is going on, why it seems that death is around us. I have had to do a lot of soul searching since losing Kaleb, I had to define my beliefs and I do believe that we will be together again. That being said I found great peace in the fact that this incredibly close family went to heaven together; however, what a great loss to the world that they are no longer here with us. I amnot sure if I will be able to attend the funeral or not. I am so emotional and Kobe is so unstable (it is 2 hours away) and did I mention that Kevin is in London for 5 days so we are on our own here. I haven't told him about our friends yet, he speaking out there, he is all ready so concerned about Kobe, how can he stay positive and motivate others if I burden him with even more devastating news.

My friend told me that all of this won't sink in for some time, she asked me to call her when it does. She is an amazing source of support and though we live 3 hours apart, she has been by my side every step of the way. I think I am becoming numb, I think I am not surprised by these shocking events any more, I think that is un-natural...I lost a close friend when I was 3 months pregnant, it was sudden and we were floored by the news. One week after Kaleb's death we learned my husband's best friend was shot in a random act of violence. His fiance has become a fixture in our house, a part of our family, we have been healing together. We then learned of Kobe's chronic illness and now this. I don't know that I want it to sink in.

I do not want this blog to be a depressing, I think it is rather a testament of life, as strange as that sounds. Life is so precious. As parents of preemies we face so many unkowns, so many close calls, we are forced to question our beliefs and test our faith. I believe that being the mother of a preemie has armed me with the "tools" I need to move forward in the face of adversity. I have become full of faith, I believe that things happen for a reason and that one day those reasons will be revealed to me. Those beliefs give me comfort in times like these.

I know I have rambled on today, if you lasted this long, thank you. I hope you don't finish this feeling down, that is not my intention...I am so grateful for what I have and for the time I have, every second is precious.

Hugs to you all, I appreciate you all so much.

Posted by Jessica Bracy | Comments: (5) | Permalink

BLAH, BLAH, BLAH - HAVING MY OWN PITY PARTY

Oct 24, 2005 12:02am (EST)

I have been exhausted all day, the cross eyed exhausted, but I am still up...what is wrong with me? I have had the weepies since last night, I started on the way home from my Mom's last night and I have been off and on ever since. I just get so sad, so tired, so frustrated and so mad.

I miss Kaleb desperately. I miss what should have been. It really feels like somebody is missing from our family, like there should be another car seat in the back, another little body in our bed. My due date is around the corner, it is a due date we never thought we would make, we always knew Kaleb would come early. I find myself yearning for the NICU, as sick as that sounds at least he would be here.

My husband asked how we would have handled having Kaleb in the NICU while Kobe is sick...something I have thought about, but it doesn't ease the pain. We would have figured it out, we would have made it work. Which brings up another source of my frustration...Kobe's un-cooperative colon.
After all that he has been through why this...why a disease that he will have to deal with forever. My heart just breaks for him.

Blah, Blah, Blah...I don't sound at all like the grateful Mom that I am. I am grateful for my sweet daughter Kendra (and very grateful for her mother for having her), Kendra is my step-daughter to most, my daughter to me. She will always be the easiest baby I never had to have! I am grateful for Kobe, whatever we have to face we will all face it side by side. I am grateful for his strength and his courage, he is our joy. I am grateful for Kaleb, for the hour and 18 minutes that he was with us. His peace will comfort me forever. I will always have the honor of calling him my son, I will always get to be his Mommy.

Sweet Dreams to you and yours.

Posted by Jessica Bracy | Comments: (5) | Permalink

SETTLING IN

Oct 22, 2005 01:38pm (EST)

We are settling in to Kobe's new medication schedule, I feel like I am constantly sticking something somewhere....was that too graphic? The steriods are making him a bit more agressive, we actually wrestle at times to get him to take his medication. Just when I got him to take his oral meds it is time for his IV pump, then back to the oral...over and over until bed time then we add some rectal meds and his pain killers. At times I can't remember if I am the mom, the nurse or the torturer.

He is a trooper, I really couldn't be prouder of him. The nurse comes every few days to clean his site and all that good stuff, he dreads her visits, he can't stand the tape being removed and the alcohol in his site...I can't say I blame him, there is a lot of tape and I know the alcohol really stings. Yesterday he screamed, head butted my mom and kicked the nurse (all by accident in an effort to escape). He was soo upset throughout the whole process, but the minute she finished he thanked her for coming and then immediately told her she didn't need to come back...ever!

We go back to the doctor Monday, she has called to check on him every day, as well as her nurse, I am so grateful! He is still in a lot of pain and is having a hard time eating, I am not sure what to expect next, but whatever it is we will get through it, I am just so glad he is here with us!

Posted by Jessica Bracy | Comments: (3) | Permalink

AMEN SISTA!

Oct 14, 2005 08:16am (EST)

I was reading Darcy's blog and my blood is literally boiling! How can they deny synagis to a child on oxygen...what is wrong with these people?!? I spent over 5 hours yesterday alone dealing with Kobe's insurance and our insurance caseworker trying to figure out how to get them to understand his situation. They had him sent home with a picc line and then decided they didn't want to cover home care.

I got home from the hospital with Kobe on Monday night and on Tuesday morning at about 8 am the phone started ringing...we can't cover this or that...blah, blah, blah. I ended up writing a check for $585 for 3 days worth of medication and the nursing visit. RIDICULOUS!!!

By this time we could own a wing of the hospital, a small pharmacy and I am sure we have bought a doctor or two a nice luxury vehicle...do they really think I can afford meds at $1000 a week? Isn't that why we pay insurance premiums, for the just in cases (which for SHARE mom's come about quite a bit)?

Thank God the insurance company finally gave me a caseworker, she is on it. I have every confidence that between us and Kobe's doctor, who is livid, we will get this taken care of....if not they better watch out for me, I don't give up very easily!

Hugs to you all!!! Especially you Darcy, I know you need one today!

Posted by Jessica Bracy | Comments: (3) | Permalink

KOBE'S HOME!

Oct 11, 2005 10:24am (EST)

We made it home last night, it is nice to be home. Kobe came home with a central line. He is on IV meds, oral meds, and rectal meds...our life again revolves around what time he needs what and what day and time the nurse is coming...just like old times.

Kobe was diagnosed with severe chronic ulcerative colitis...his doctor explained that it is going to be a long road, but we will get him under control. Keeping him under control will be another trick, but she was confident that it will happen. She even submitted his name to Make A Wish...she thought it would be a bright spot in this long process. Yes, I cried when she told us...it is so nice to have a doctor who loves my son and actually has his best interests in mind.

I appreciate being able to come to a place where people understand and can relate. Thank you for your thoughts and prayers, they do make a difference.

Posted by Jessica Bracy | Comments: (5) | Permalink

BACK TO THE HOSPITAL

Oct 04, 2005 04:26pm (EST)

We had our dr. apt. last night, Kobe had lost about a pound and looked pretty ragged. She picked him up and he was limp in her arms, though he had no problem with her kissing and hugging him!

She seemed very concerned about just how out of control his colon is and scheduled him for an exploratory procedure Thursday morning. He will be admitted for IV steriods - depending on how he does and how bad his colon looks he will either come home with a central line for more steroids or come home on maintenace meds. She couldn't tell us how long he would be there, she said to count on at least the weekend. As it looks today he may be admitted tonight or tomorrow, he is so uncomfortable. We are in somewhat of a holding pattern, watching him and trying to keep his pain under control. They have put him on a few different meds, one for pain, because he isn't eating I don't know if they are helping or hurting.

I am a little hesitant about being back at the hospital so soon...I delivered Kaleb there just about 3 months ago and have not been back since. I am looking forward to seeing our nurses, but nervous about being back where I held him and kissed him for the last time. I will do whatever Kobe needs, so I have no choice but to deal with my emotions and move forward.

Please keep my little warrior in your prayers, he deserves a break, hopefully this hospitalization will be the beginning a long remission for him.

Posted by Jessica Bracy | Comments: (3) | Permalink

ENOUGH

Sep 29, 2005 11:01pm (EST)

Kobe is really having a hard time with his tummy, his ulcerative colitis is completely out of control...again. My poor little guy is really struggling, it is so frustrating! He is passing a lot of blood and is in a lot of pain. They started him back on Rowasa enemas, needless to say he is not thrilled. He is being a very big boy and allowing Daddy and I to administer the meds without a fight. He cries some, but overall he does very well, I am sooo proud of him.

We go back to the dr. on Monday, she has been preparing us for hospitalization, I am hoping to avoid it, we have had enough of the hospital for awhile. I am working hard to keep a sense of normalcy, this is something we are going to have to deal with for the duration.

Hope you are all well, you are in our prayers!

Posted by Jessica Bracy | Comments: (4) | Permalink

WELCOME TO THE WORLD KOBE!

Sep 22, 2005 09:55pm (EST)

This is harder than I thought it would be. Let's see if I can wrap this up...

They started me on endocin to stop the contractions, then came the terbutaline shots, first one or two a day then 5 or more, I was exhausted and worn out. My heart was costantly racing and I would stay up shaking, unable to sleep...it became too much. I remember telling the nurse how uncomfortable I was, she went to check Kobe's heart rate and noticed he was VERY low. She called the doctor, they thought this was it...I was at the end of my 25th week. I was started on Mag, they did the first loading dose without getting the results they were looking for so they did a second loading dose, needless to say I was a mess.

The Mag bought me a few more weeks. I was leaking fluid constantly and having bleeds every few days, but I had no fever, no infection. I had received my steroid shots and had to have a pic line inserted a few days after the mag was started. My veins had given up, my IV sites were getting infected within a few hours after they were started and they had run out of places to put them.

On July 7 I wrote, "Everything hurts...my neck, my shoulders, my legs, my shins, my wrists, it even seems like my hair and teeth hurt. I am contracting constantly, my pic line site is sore, my blood pressure is low and my eyes are burning. I can't stop crying...the nurses keep asking me if I am ok, and my mom said I don't look very good at all, emotionally I am worn out and physically I just don't see how my body can hold up for much longer."

On July 8 my day nurse gave me some extra medication for the pain in my lower back, it was unlike anything I had ever felt before. They also increased my Mag and gave me a sleeping pill to quiet my uterus down. My night nurse came on duty and said, "The 9th is my sister's birthday and it is going to be Kobe's birthday too." I was pretty out of it and didn't understand what she meant until about 2:50 am., I was sleeping on the monitor because of all of the contractions so when I pushed my call button and told my nurse I had to use the bathroom she quickly replied NO YOU DON'T and ran to my room.

I was bleeding heavily, I called my husband and said something is wrong come quick. Then I called my mom, by this time L&D was in my room...I remember them saying, "This is it!" so I repeated that to my mom and hung up. The nurse said she saw small parts, I was surrounded by nurses, moved to a gurney and told to push. I pushed a few times before I was instructed to stop, Kobe was stuck and his heart rate was very low. Suddenly we were racing down the hall, I was so scared, I was trying to grab any hand that landed on the railing of the gurney. The nurse got very close and said, " we don't have time to explain anything to you honey, we have to go very fast."

They kept bending me to get the epidural started and flattening me out to listen to Kobe's heart beat. My legs went numb immediately, all I could feel was the table shaking. Then a nurse said, "He's outside." I remember thinking, who is outside. I now know she meant Kobe. He had been born and taken away without making so much as a peep. I didn't get to see him, he was taken to the corner just as my husband entered the room. His face said it all.

Kobe was not breathing and his legs were up by his ears. He weighed a little over 2 lbs. and was 15 inches long. They got him on the vent and rushed him out of the room. I was ready to be done, I wanted to stand up and follow him...my part was supposed to be over, it was supposed to be all about him. However, they had a hard time controlling the bleeding and as I was progressing through labor I had spiked a high fever, the infection had set in.

After 10 weeks in the hospital the day had come, my little miracle came to join us. The doctor in the NICU warned us that it didn't look good. He had been through months of trauma, he lacked fluid most of the pregnancy and most likely was infected just as I was. He explained that the first 2 weeks will tell us a lot, if he makes it, and that Kobe most likely will face a lifetime of blah, blah, blah....that is what I heard. I was looking at my beautiful son, we had just shared a journey no one thought we would survive, he was not going anywhere now.

Kobe was off the vent in 36 hours, he surprised everyone, except his Mommy, Daddy and big sister. He fought in the NICU for almost 3 months, his strength and determination inspires me still today. He came home at 3 lbs. 15 oz....they had said he had to be over 4lbs. but Kobe has some problems with his colon that hinder his growth so once he was healthy enough they let the weight restrictions go. Kobe has shown us strength that we never knew we had, he has rekindled our faith in miracles and is a constant reminder of how blessed we are. Even after losing our sweet Kaleb we look at Kobe and know that God has a plan.

He truly is our peace. I am so grateful that I was picked to be his Mom, it is the most amazing experience I have ever had the joy to be a part of.

Good night, thank you for listening, it means so much.

Posted by Jessica Bracy | Comments: (2) | Permalink

SO GRATEFUL FOR THE OPPORTUNITY

Sep 22, 2005 11:21am (EST)

I promise I will finish Kobe's story...but I just got a call and wanted to share our news...we are going to be the Ambassador Family for our region for 2006. We are very grateful for the opportunity to honor both of our son's and the challenges they have faced due to prematurity.

We are looking forward to making an impact in our community throughout the upcoming year and educating people on the effects of prematurity, both positive and negative. We are also looking forward to working with our family team for Walk America...a team to honor Kobe and Kaleb Bracy.

Back to Kobe's story later tonight.

Posted by Jessica Bracy | Comments: (3) | Permalink

MORE AND MORE OF KOBE'S STORY

Sep 21, 2005 11:01pm (EST)

On May 9, 2001 I wrote the following entry in my journal:

We've been at the hospital since April 30 - we meaning mom, who has been here everyday, washing my hair, holding my hand, feeding me edible food and making me laugh; Lisa who took off work early my first day here and sat with me - helping Mom make lists an figure out what needed to get done and letting my Mom go home and get some sleep with the peace of mind that I was not alone; and of course Kevin who was in Los Angeles when we got here and stayed on the phone all night encouraging and loving me even though his spirits were down. He has been here every day- fitting in our business, speaking, Kendra and getting into the new house - no matter what obstacles I have encountered there is no doubt that I am BLESSED.
The day we got here was a long, scary day- but even through my tears I felt that we would not lose Kobe - I am so grateful for Dr. Knight for not giving up on us - whatever it takes we can do it- he has been absolutely wonderful! I have total confidence in him, that is a good feeling.
My room is filled with beautiful flowers, balloons and plants - our friends and family have turned this dreary room into a beautiful, hopeful place of miracles!

I kept a journal throughout my pregnancy, looking back I can tell by the writing when they started the terbutaline (my pen kept shaking off the paper), when I was on vistorall (the writing would start to go diagonal as I fell asleep) and when the magnesium roller coaster began (the writing was out of the lines, I couldn't see very well)...I get the chills as I look through it, but I am so glad I have it.

The first few weeks in the hospital were relatively calm, I leaked here and there and bled some, then came the day that changed the entire course of the pregnancy. It was the day that boredom was no longer an issue, in fact, I prayed for boredom...everyday came with a new challenge. It was the day I hit 24 weeks, the nurses had a little party for us, boy were they surprised...24 weeks...VIABILITY!! After the celebration I got up to use the bathroom (what a treat) and quickly realized that I was not just leaking fluid but gushing blood as well. I pulled the cord in the bathroom and they all came running, it was like an episode of ER. My mom had just left for my cousin's wedding and I remember one of the nurses saying, "You can't do this, your Mom is gone!"

It was very hecitc, I had IV therapy on one side, the lab on the other side all while one of the nurses was trying to get a bed pan under me...so much for modesty. They hooked me up to the monitor and there was my little soldier strong as ever! You know the drill, I was taken off food and fluids - just in case - scheduled for another ultra-sound, hung upside down and left to relax (right).

As I laid there the specialists started coming in talking about blood transfusions, micro-preemies, the risks of going into labor so early, issues with ruptured babies and all that other fun stuff. I believe that was the last of my coherent days, the ultra sound identified a hematoma in my placenta and the contractions began. My pregnancy was taking a turn for the worse, but Kobe didn't seem to notice.

More to come...sorry this is taking so long, but thank you for your interest.

Posted by Jessica Bracy | Comments: (5) | Permalink