It's Not Cancer...

While browsing through Facebook, Chanel and I came across a CNN article that was submitted by a family staying in St. Louis. They seem to be going through the same things we experienced.

It Is Killing Our Babies and It Is Not Childhood Cancer

Impossibilities

It is hard to find things to write about anymore. It is almost like a writers block. I look at websites or Facebook at the other people who struggle with CDH children and it reminds me or Missouri and all those days spent in a hospital room. The day after Isabella's funeral was the start of a new college semester for me. Staying on task and focused never was this difficult. Math seems more difficult, chemistry more distant and psychology more confusing. As my father offered a prayer during the funeral service he stated how Isabella had left an imprint on his life. It makes me ponder and reflect on just how much she made an impact on mine. Now we worry about bills to pay, cars that need fixing and tuition that needs to paid, but our the memory of our daughter is just as present. Chanel and I are getting married in February and although we try moving forward with our lives it is difficult. Chanel still struggles through these hard times, and breaks down in tears without warning. It always seems to catch me off guard but I know how she feels. This is the saddest experience either one of us has gone through so far in our young lives. The death of a loves one who had so much to give and gave as much as she could the short time she was with us. It is nothing short of heartbreaking. Yet here are, our meaningless day to day challenges causing us to push on with life. To continue to try to live our lives to their fullest while maintaining our sanity. It is not easy, but it is not impossible.

The Seventh

Here we are where it all began, the very same room we were in to prepare Chanel for surgery in early December. I came to realize Isabella had already been born about 30 minutes after I got the call that Chanel was in labor. That puts me in downtown St. Louis on a train headed for the hospital the moment she was born. I arrived to find Chanel half awake surrounded by nurses on every side. It was not until a few light congratulations were thrown my way that I came to understand Isabella had already been born. When it was finally my turn, I took Chanel's hand and kissed it, then proceeded to kiss her softly on her forehead. Her face was covered with an oxygen mask, and she could not speak very loudly to me. One of the doctors, Dr. Yang came in and told us the condition of Isabella. At 3 pounds 12 ounces, she was in stable condition, but without any major improvement in lung performance within the next couple hours, they do not know what will happen. They are transferring Isabella back to the Children's hospital, and we will follow shortly after. They told us they would wheel in Isabella before the transfer so we could see her, which made me very excited. Isabella entered the room with an arsenal of paramedics and nurses, escorting machines and her glass isolette draped in blankets. They removed the blanket from the side so we could look in. She was so tiny and fragile. Tubes ran from inside the isolette to a variety of machines helping her breathe. One side of her isolette opened, and Chanel was able to hold Isabella's hand for a minute. As she did so, Isabella's heart rate monitor increasingly sped up. She knew who her mom was, and that made all of us really happy. Another round of light congratulations was succeeded by Isabella being moved into the hallway and towards the ambulance where she could be transferred.

Can't Stop Tomorrow

The number seven has always been my lucky number. I always picked it as my jersey number when it was available, and it was my favorite professional soccer players number as well. Even when my mom worked for the school district driving buses she drove the number seven bus, which was also mine. Today is the seventh of January, 2012. I woke up at 5:30 am. to two missed calls by some local number. Voicemail tells me it's one of Chanel's nurses, and that Chanel has gone into labor. She will be delivering baby Isabella this morning. The funny thing is that in the voicemail, the nurse asks me to call them back as soon as I get the message but not to freak out or rush to the hospital and to take my time. I call them to let them know I'm on my way and jump into the shower almost simultaneously. Of course I'm freaking out. Today marks 32 weeks for Isabella. Just yesterday the doctors were asking us about delivering around 34 weeks or if we wanted to wait until 37 weeks, allowing more time for Isabella's lungs to develop of course. Right now it is 6:35 a.m. and I am on the bus pulling up to the hospital. Once again it is time for the waiting game.

Un Año Nuevo

Looks like we will be spending tonight in, yup... you guessed it, the hospital. That is two holidays in a row we have spent watching TNT movies in a hospital bed and eating cafeteria food. Not much has changed in Isabella's health since Christmas, with the exception that Chanel's water broke on Thursday. This does not mean the baby is coming, however. The doctors still want to monitor Chanel for contractions to be sure but they made clear that the baby will not be delivered for weeks. Isabella can not be not be born before 32 weeks, and today marks 31 weeks. The reason being is that the medical staff will have to put Isabella on breathing machines. If she is not at least 32 weeks, Isabella's body will be too weak to survive. Once again, we are living hour by hour waiting to see what lies in store for Chanel an I. Chanel insists that Isabella will share the same birthday as me, January 28th but I think she will be born sooner. We will have to wait and see!

Our New Home

Missouri has become a sort of second home to Chanel and I. The nurses and doctors act like we are part of their family now. They have already confirmed what was our second worst fear, that we would be spending Christmas in a hospital. However, due to technicalities, we have two round-trip tickets between Phoenix and St. Louis. Chanel's mother, Traci and Chanel's son Rylan will be flying out on the 26th to spend some time with us here. Right now she is on the phone with the airlines and the airports trying to schedule the flights. Everyday for us has been non-stop organizing and prioritizing of travel accommodations as well as residence here. While we were in the middle of today's chaotic agenda, the lunch boy from the hospital cafeteria brought Chanel's food. He asked how we were doing, and Chanel paused from the phone just long enough to say "just fine, and you?" His answer left Chanel distracted from her phone call as he replied, "I am blessed." We looked at each other and as he walked out the door he said "ya'll have a blessed day." It is so very true, we are blessed to be here at this critical time in Isabella's life and to be surrounded by people who truly care about us while we are so very far from Arizona.

Lazy Sunday.

Chanel was released from the hospital this morning after a long nights stay in the hospital. The baby did not want to stop tumbling around and kicking last night while we were trying to sleep. Unfortunately for Chanel, Isabella was kicking right where the small 1/4 inch incision was on her belly. Chanel was in so much pain but there was not anything we could do, of course. Also the baby monitor that was strapped to her stomach all night  had to be re-positioned by hospital staff. The monitor, which resembles to small ultrasound-type devices keeps track of the baby's heartbeat and any contractions. Because Isabella would not stop moving, nurses came in and out of our room about 6 or 7 times to wake us up and fix the straps on Chanel. Needless to say, it was a long night. We were released at 9 am and called a cab to take us back to the Ronald McDonald House where we could finally get some sleep. After a short nap, we decided to shower, do some laundry, and snack on some cookies that were made for the families of the RMcDH  by Wells Fargo employee volunteers. It so neat to see all the volunteers that are coming in and out making meals for the families. Two days ago we even ran into the missionaries, who perform their weekly service here. Last night a local high school N.H.S. members came and baked homemade pizza for us. Chanel and I are so grateful for all they do for us everyday and the time they take to help all the families, which number about 20 in all. Right now we are sitting in the dining room watching the Broncos vs. the Bears game while local members in the community are cooking chili and cornbread. I'm following the Cardinals game through ESPN.com on my laptop just waiting till dinner is ready. I'm also preparing the photos that we will be posting on the blog sometime soon.

We Wrote This Down For You.

So I guess our first post should be about what an amazing experience this has been for both Chanel and I. We're finally here in St. Louis at St. Mary's Medical Center where our little Isabella can recieve treatment for CDH. I can still vividly remember the first time we were told the horrible news about CDH and what it entails. On this blog we have included a link of our favorite websites that helped us research more about this disease, so if you are still curious as to what CDH encompasses, please feel free to click the link above. Chanel spent 95% of the two months on the phone contacting doctors, nurses, and insurance companies to try and find hope for our daughter. It was not until the morning of December 6th that St. Louis called with the wonderful news that we had our plane ticket reservations waiting at Sky Harbor Airport. We left that morning, our hearts filled with joy that despite what statistics and data would show our baby would have a chance. Blessing after blessing, day after day, compassion has been shown to us by hard working individuals both in Arizona and Missouri. Our friends and families have been praying and will continue to do so tirelessly over these next few weeks as the Hydrogel that is in place works on the growth of Isabella's lungs. We will be posting pictures of our visit in St. Louis as soon as we can.