Bennett David Kahl

Bennett David Kahl
I do not cease to give thanks for you, remembering you in my prayers Ephesians 1:16

Thursday, February 26, 2009

Angel here on earth?

Today was another beautiful spring day! I had the day planned out, so I could get work and play accomplished. I have been putting off calling the genetic counselor only because Brandon has been working 12+ hours a day and the last thing he has time for is accompanying me to ANOTHER specialist. However, that is just one appointment he has to be present for. I am embarrassed to admit this…but, I need to call and schedule my CT, too. My excuse for not doing that yet is because Ellie has been sick…then I was sick and now Biddy is sick and she is the only one that we let babysit Ellie. Anyway, my conscience is getting the best of me, so I am going to try and get it scheduled for the same day as the GC (genetic counselor for short).

Apparently, God wasn’t going to let me hide from the GC because my phone rang today and caller ID said “Baylor College of Medicine.” I always answer b/c it is usually the CF clinic. Well, it wasn’t…it was the GC kindly reminding me that we needed to make an appointment to see her (she is VERY nice). I took the opportunity while I had her on the phone to ask her the 1000 questions I have had swirling around in my head. I wish I could recount the entire conversation b/c it was awesome! She sat on the phone for an hour and allowed me to ask her every question I had about the likelihood of us using our 5 remaining embryos vs. having to reharvest new eggs. We went over every scenario (you all know my type A had to get every detail) based on what we find from Bennett’s tests and Brandon’s Ambry test that should come in next month. The combination of the findings is what will determine how we can proceed.

Stressful, yes…but, she also acts as an advocate for us. So, we are going to appeal to our insurance company to try to get them to cover a fresh cycle of IVF with preimplantation genetic screening on Day 2. This is where all of you come in…we need prayers from all of you. If she can actually accomplish this I am pretty sure she would be considered our angel here on earth…it would be an answered prayer. We will know more next Tuesday, but for today it was a pretty big boost for the ol’ morale.

Today, I made my first baby doll t-shirt dress for my little cowgirl to debut tomorrow…Houston Rodeo kickoff day! ADORABLE!!! Look for the pictures tomorrow.

Now I’ve got to run to do our family devotional time. Rather than give something up for Lent (one thing for all three of us) we decided to add family devo time while we lay in bed…now if I can just wake B back up!!!


March for Babies update: Only 58 days left until our walk. There has been an issue with our team site. I have emailed MOD several times and have not received a response back. If you are planning on walking with us and you are collecting donations please email me personally. As of right now we are at $765...a mere $2235 left to go. WE CAN DO IT!!!! Remember: A gift certificate for the indivudual that raises or donates the the largest sum!

Wednesday, February 25, 2009

Wonderful Wednesday

Oh...what a beautiful day it was today (78 degrees!). Ellie and I just enjoyed each other...played outside...ate yummy was just what we both needed! Here we are on our Cupcake date yesterday...Crave cupcakes are the BEST!!!

Enjoy the slideshow. No, we didn't "disown" B, but he has been SUPER busy working these days, so he is in fewer and fewer pictures!

Tuesday, February 24, 2009

Pumping myself back up

Life of the party…or deflated balloon left over from the party?

I promise that one of these days our blogs will get back to fun topics and cute pictures…that day isn’t today though. I just feel like I need to get these fears out of my heart…partly to help me realize them and party to help me pray for them.

Yesterday I felt defeated. Not from the minute I got out of bed, but from the minute the phone started ringing with doctor after doctor wanting to plan, schedule and question everything from embryo and fertility to cystic fibrosis.

1. Pulmonologist calls to check on me (how awesome is that!) and see how the antibiotics are working. She said I still sounded congested, so only give the meds a few more days and if there is no change we might have to up the arsenal. She then starts talking about how she contacted the genetic counselor and they are going to call me today to set up an appointment. Also, she has Brandon’s lab slip ready for him to come and have the blood drawn for Ambry genetics. She told me that I sounded stressed about the situation…Insert breakdown here: Stressed…ya think??? Sad: b/c we probably can’t use our 5 remaining embryos. Scared: About the financial burden my medical issues have caused our family and how there is no end to them. Pure disappointment is how I feel. Basically, they (the pulmonologist and geneticist) are convinced that Bennett had CF. Not knowing exactly how your child died is a huge burden to walk through life with. With all of this CF talk it just stirs that pot of emotions up for me.
2. The geneticist called to discuss family history questions and set up a time to meet. They seem confident assuming that Brandon will be a carrier (based on a few of Bennett’s symptoms at birth and his respiratory issues that followed). At three weeks old Bennett had his first surgery for a meconium plug: Fifteen to 20 percent of newborn babies with cystic fibrosis have something called meconium ileus at birth. This means their small intestine is obstructed with meconium. Now, truthfully because Bennett was preemie he falls into a category where respiratory issues and feeding intolerance are to be expected. The fact that he was premature is what is giving me my last bit of hope that Brandon will in fact NOT be a carrier allowing us to continue another IVF round with the embryos we have. If not, even with the technology we have today it would be too risky to test our day 6 blastocysts. The recommendation thus far has been to prepare ourselves to re-harvest more eggs, fertilize them and then test them on day 2 to determine if any can be implanted. Not only is this procedure painful for my body, but the costs are astronomical. I am at a crossroads between my heart and my head. Go into debt to try a new round of IVF or regret not trying at least one more time for the rest of my life…
3. I got a call to schedule the chest CT, sinus CT and have some blood work done. This wasn’t so bad b/c I am really interested to see what the CT shows. Although, with the track record I have right now I should probably wait!!!
So, I guess this defeated feeling comes from fear. It is easy to say, “Lean on God,” and truly I do. However, I believe you have to get to that point first. It is only natural to grieve for what we wanted before we remember that this life isn’t about what we WANT at all. Then there is anger. I am so mad at the fertility doctors that allowed us to go through years of fertility treatments without performing genetic testing. Seriously…CF could have been the reason I could never get pregnant naturally, so why wasn’t that considered? Years of emotional turmoil, THOUSANDS of dollars and the DEATH OF A CHILD before anyone thought to run a stupid blood test. I am furious, but what good does it to…none, so I brush the fury aside. Here comes doubt. I doubt whether it is even a good decision for us to continue to fight the fertility battle. Truthfully, ½ of our appointments and issues come from trying to have another baby. When is it time to leave well enough alone? I had a conversation with myself yesterday:

Self told me: I will regret not at least trying one more harvesting to genetically test at day 2 and try for another baby.
I told self: ONE MORE and that is it. I know you will regret it, but there has to be a limit. I am not sure how much more of this I can take. Are you listening, Self?
Self to me: Yes, I hear you…one more. Plan for it & pray for it.
I told Self: Good…then we agree. No more tears after this…at least you can have one more chance!
So, there you go. The decision has been made…I am preparing for worst case, but praying for a miracle. I know you will all join me in prayer and I thank you in advance for that.

So, this deflated party balloon is pumping herself up again! PUMPING…pumping…pumping!!!

Germ update: Like I said earlier, I am still congested, but I am still on the antibiotic. Ellie is still having a runny nose and just isn’t back to normal yet. She threw up 10 minutes before I left for my play on Sunday (perfect timing) and then again last night. It is weird b/c it’s only been once each time and it’s only a little bit. But, believe me, it is nasty “real” throw up! STINKY!!!

Cute side story: Ellie still sleeps with us (quit judging!!! We love it) and so when we go in her room to play she loves to get in her very cute Pottery Barn toddler bed (that is in there for decoration) and play. She tucks me in and pats my back and pretends to snore…it is so fun! So, yesterday we were both laying there and she looked up at the frame on her dresser of Bennett. Our conversation went like this:
Ellie: Hi, Bubba
Me: Hey, Ellie do you know where Bubba is?
Ellie: He’s sleeping…awwww
Me: (with chills) Is Bubba sleeping in Heaven?
Ellie: I uves you Bubba
We got great books that will help Ellie understand Heaven and why we talk about Bennett and love him even though he is not here. She has always known that as soon as we pull up at the cemetery we are there to see Bubba and any time we see a flower she has to smell it and immediately says that it is for her bubba. I don’t really know the appropriate age to teach her about Heaven, but she has always been so connected to Bennett that I figured I’ll start a little at a time and see how it goes. I am SO incredibly thankful to have Ellie…she is what makes my heart full.

Mimi is leaving for Denver tomorrow, so we are off to have a fun girl day with her. Lunch at my FAVORITE place to eat followed by a trip to Crave (a very swank cupcake bar) and then our weekly visit to the grocery store. How exciting!

Wedding update: Uncle D and Aunt K have decided on November 6, 2010 (we think). They have made a ton of decisions in a short time…not surprising! Ellie grace will be a flower girl, B is going to be a groomsman and I will be the oldest, most out of shape bridesmaid in the history of all weddings! I am considering asking to wear a color coded moomoo in lieu of the brown strapless dress K is considering. On the upside I do have over 600 days to get my bridesmaid body back…but, seriously, who am I kidding!!! I can see the pictures now…here comes the bride…and what’s that behind her…a human Hershey kiss???

Here’s to a terrific Tuesday to all of us!


Friday, February 20, 2009

Doctor update

Okay, so I had a bit of a nervous CF moment this morning that prompted me to call my doctor (aside from the fact that I feel like I have been run over by a tank). I was clearing some mucus from my head (gross…I know), spit in my sink and there were a few streaks of brown in it. YIKES! For me (a mere beginner to the CF world) that was scary...but, I was sure it had something to do with the gallons of drainage I have been experiencing for the last few days.

When my nurse called back she assured me that I had made the right decision by calling her. She put a call into the doctor and I just got a call from them that they called in few prescriptions for me. She is pretty sure this is just a nasty sinus infection (not uncommon for CF’s to get) I am no stranger to them, so it’s nothing I can’t handle.

I have had the streaks in the mucus before, but it was before I was diagnosed with CF. It took on a whole new meaning this morning! I am sure these meds will fix me right up and I will be keeping up with Ellie by the end of the weekend. (Hopefully!)

Thanks for the advice Christy, Somer and Heidi! It is so wonderful to have such a great support system.

Also, Amy (I haven’t forgotten to stop by ) reminded me that I never posted about my brother’s results. He was tested and does NOT have CF…he isn’t a carrier either!!! What luck! I was so happy to get the news and he was even happier to point out that he was not following in my footsteps ~ for once!

Pray for great antibiotics!!!

UPDATE: The nurse couldn’t get my doctor on the phone b/c she was flying somewhere… So, the nurse chose Amoxil because I have been on it for sinus infections in the past and it works. I can breath through my nose as I type and that is an upgrade from 12 hours ago. I also have a prescription nose spray and a sinus rinse solution. Apparently, I am going to be doing a lot of irrigating up there!  Question for my Cysters (do I qualify to be a cyster?) when you get this kind of infection where you are tired and blah is it normal to be out of breath or feel the need to take very deep breaths occasionally? I might be paranoid, but I just feel like there is a lot of pressure in my chest cavity when I take a deep breath in. Who knows…

Picture update

I have been terrible about update pictures...Enjoy! :)

This is one of my favorites!

Thursday, February 19, 2009

Houston we have a problem...

Houston we have a problem.

Ellie is still sick. I thought her nose was clearing up and her cough was sounding better…until today that is. Brandon is sniffing now too. I know that there are those of you out there with husbands that act like children when they are sick…I have one of those!
2. Something happened to my child post seriously high fever (I am kidding of course…but, really I’m not). She is out of control and has been for 3 days. Not just your ordinary out of control, but really, really wild.
1. I am sick…really sick…so sick that I woke up at 3:45am and I haven’t been back to sleep yet b/c my throat feels like it is on fire. I have blown so much mucus out of my head that I am afraid of: A. not having any mucus left in my entire body; or B. My nose being wiped/blown off of my face (that could actually be a good thing right now).


I know it seems ridiculous at this point b/c it has been so long, but Ellie is still sick. I think everyone is sick with the same crud right now and even though we have been holed up in our house and gone through 3 cans of Lysol we obviously can’t shake it. She can’t handle being cooped up anymore, but she can’t be released into the general public to spread her germs either. We have painted, jumped on the jump-o-lene, watched movies, cooked together, used markers, played in the ball pit, done laundry, played babies, played people, read several hundred books, done flash cards, you name and we have done it! To top it off I feel like she is a totally different child post fever. She is W-I-L-D! Not just your typical two year old, been in the house, kind of wild. She is jumping onto and off of everything. Getting into things she would NEVER get into typically. She has been in time out six times in two days. That’s more than the last two months combined! To make matters worse, she hops all the way over to time out, jumps into a sitting position and then looks at me and says, “I sorry mommy, I be nice, I uves you.” She then proceeds to take herself out of time out and hops over to me to kiss me and tell me she is sorry again. Hop, Hop, Hop…

How can you not laugh at that???

In an effort to keep up with Ellie’s new tradition, I woke up at 3:45 this morning b/c I felt so sick. Initially, I thought it might be strep throat, however I haven’t had any stomach issues or vomiting (years of teaching taught me that most kids start with stomach symptoms before strep strikes). I looked at my throat and didn’t see any nodules in the back either…so; I don’t think its strep. I am pretty sure it is just a REALLY bad sinus infection. I have been debating on which doctor to call. Do I call my CF doc or stick with my family doc. Maybe for fun I should call the really rude nurse in the fertility office and ask her what to do…just kidding of course! Seriously though, I have so many stinking doctors I really don’t even know which one to call first. I have been putting this off in hopes it would just go away, but I can feel myself wheezing with deep breaths now, so it is probably time to get it taken care of. My sweet mom felt so bad she surprised me by going to the grocery store and then driving 45 minutes all the way to my house to bring goodies and ingredients to make homemade chicken and rice soup. There is nothing better than a mommy that goes out of her way to make her baby feel better! Thanks mom! Unfortunately, I don’t feel any better…even after my VERY YUMMY chicken and rice soup. Hey Somer: If you figure out to make a tube top band aide, do you think you could take some time to make one for my head?!?!? You’re a doll!!!

Even though I felt like crawling up in a dark hole today, I couldn’t b/c I was so busy working. I think it was National “Place a monogram Order” Day. I’m not complaining at all b/c business is great…any other day and I could have probably handled it all…not today!

I have tickets to see Legally Blond (Broadway version) on Sunday evening, so I am pumping myself full of vitamin C in order to get rid of these yucky germs!!!

I am confident that soon this wild ride will come to an end and we will land back on earth safely and resume our normal lives…Houston…we’re coming in for a landing…

Tuesday, February 17, 2009

Overwhelmed...overly tired and overly stressed!

I am going to preface this blog with the fact that I have had a tough two days. It might be because I have spent the last 168 hours worried about why my child still has a fever. Maybe the two trips to the hospital and two trips to the doctor in that time have me a little on edge. Or maybe it’s just that I am weak and fed up…(although you will never actually get me to admit that out loud)

Six months ago, when Brandon and I started talking about REALLY doing our IVF I thought we would be pregnant by now. This little CF diagnosis really put a hitch in my giddy up. After the diagnosis, I knew we had to wait and see what Brandon’s genetic results were. I thought we were in the clear when they discovered he wasn’t a carrier of the most common mutations. I felt like I had made some progress up the mountain of life until my appointment last week. In one short conversation with my doctor all of my confidence with the progress we had made in our fertility battle was shattered. I really don’t think it hit me until yesterday. I am still waiting…and praying…and hoping. I hate the fact that just one thing in my life can’t be easy (not a handout, but not a war either). I feel like I was born on an alternate planet…you know the one where women can’t get pregnant AT ALL. Somehow, I was transported to this “Fertile Mertile” planet to be tortured for all eternity. Some days I don’t worry about being an alien on this planet, but other days I feel like a total outcast. The last two days have obviously been outcast days.

I’m just frustrated. I am VERY frustrated as a matter of fact. Any woman who has dealt with infertility, CF, cancer (or any other disease for that matter) knows what I am talking about. The total lack of control over your body… the helpless feeling you have constantly; it would make anyone feel this way. I just feel like I need a break.

I am grateful for Ellie. I am grateful for the opportunity to have carried Bennett and Ellie even if it was cut short by three months. However, that does not fill my desire to have more children. Is it possible that God would have given me this intense maternal instinct if it was His plan to only give us one child to raise? My faith in His plan is what kept me going through the fertility treatments for YEARS. I never felt defeated. I never felt like giving up. I never complained. I just knew that it was His intention for me to keep going…I always knew deep in my heart I was doing the right thing. I had the same peaceful feeling when it came to deciding whether or not to use our frozen embryos. However, all of the road blocks are making me question myself and my faith in our decision. If you were to ask me what my heart says, I would tell you that I am supposed to keep going. That eventually we will have more children. If you were to ask me what my head is saying, I would say I don’t know.

I am overwhelmed and I need to refocus. I need to be patient. I need to have faith. I needed to vent!

News from the doctor yesterday: Ellie has a chest cold. She was still running low grade fever last night. We are still on Tylenol as needed and cough medicine every 4 hours. We had to cancel Ellie’s gymnastics lessons indefinitely and our pediatrician recommended that we avoid any such classes until around April (end of flu/RSV season). He did say that Ellie is an example of a preemie that was obviously protected by my immunities from breast milk for her first two years of life. She is now exhibiting the common “compromised preemie immune system” issues. Just when I thought we could relax a little…story of my life!

Happy Tuesday!

Sunday, February 15, 2009

Happy 20th Bennett Day

Happy 20th Bennett Day, Bubba…we miss you every second of every day.

Wow…it blows my mind that our little man has been gone for 20 months now. Some days it feels like yesterday and other days it seems like an eternity since I last heard his cry or felt his skin.

Usually we all go out to see Bennett with white balloons and fresh flowers on Bennett Day. Today was a little different. Ellie is still running a low grade fever and she seems to have an upper respiratory infection now. At 4 am (this is her favorite time to get really sick) she started to cough and have a ton of nasal congestion. I gave her Triaminic and suctioned her nose and she fell back to sleep. For the rest of the day we fought with sneezing, coughing and a terrible runny nose. This poor baby has been through a whole week of feeling crummy! So, I will be calling the doctor AGAIN tomorrow for (hopefully) another prescription. Daddy brought bubba fresh flowers, took pictures and then brought his balloons home and we sent our messages to him together in the back yard. Ellie is so adorable when she talks to Bennett. She looks up at the sky and blows kisses and tells me to wave…she must see something that I can’t…I would love to trade places with her sometimes.

It’s time for our weekly March for Babies update:
Only 70 days left friends!!! We are desperately trying to reach our goal and we are begging you to help us out. We would love for you to post our Team Chunky Monkey info on your Facebook, website or blog pages. The more the merrier, so feel free to send our team info to all of your friends and family. We are currently at $640…with only $2360 left to go. We have decided that we are going to offer a prize (gift card) for the individual that helps raise the most money for Team Chunky Monkey. So, get your fundraising shoes on and let the fun begin!!!

A question for all of you that have read The Shack:
I ran across this article about the book and the author...I am a little confused. I was under the impression that the story was about Willie's friend Mack and it was a true story. If you read this article it paints a different picture. Let me know what you think.

Friday, February 13, 2009

She said yes...

We had some fantastic news last night and we were so blessed to be a part of it.

My baby brother got down on one knee and asked his fantastic girlfriend to marry him!!!!!!!! She said....."H-E-double hockey sticks, yes!!! Oh my gosh, I mean YES, YES, YES!" He told her he liked the first response better. We all celebrated with Lupe Tortilla and a champagne toast ~ it was so exciting!

Dave and Katie are SO in love. When you see them together you do not question whether or not God has chosen one person for each of KNOW He has. I am...We are so very lucky to have the pleasure of welcoming her to our crazy family ~ she fits like a glove!

Congrats Uncle Dave and Aunt Katie...Ellie will be the most beautiful flower girl E.V.E.R!!! We are so blessed that you included us in the evening. What an honor.


**Ellie update:
Ellie is still running a low grade fever. I am waiting at home for the doctor to call me back about what we need to do as far as meds are concerned. She sounds very congested...kind of like this yucky stuff has turned into a head cold. We were lucky enough to have Biddy stay with her for a few hours last night, so that we could share Dave and Katie's special moment with them. PLEASE keep our little angel in your prayers. She has been through the ringer this week as far as feeling bad is concerned. Every time I get dressed she starts crying and saying, "No, mommy...home." She is so afraid that we are going to take her back to the hospital...poor baby. Another funny note: Every time I finish takeing her temp (rectal of course) she looks at me and says, "Thank you, mommy." What a SWEETIE! I think the hightlight of her last 24 hours was that we brought back Lupe Tortilla leftovers and she ate the beans, rice and cheese like crazy!

Thursday, February 12, 2009

A living nightmare!

Oh, where do I begin…all I can say is that the last two days and nights have been a living nightmare.

I will just warn you that this is a very long post!

We have had some very long days since I last posted at 1am on Tuesday. Three hours after that post we rushed Ellie to Texas Children’s Hospital because she was burning up with a 103.7 temperature and had shallow, rapid breathing. We got to the hospital and were surprised that we got a room right away. Ellie was such a big, strong girl. She even went potty like a big girl for her urine analysis rather than being catheterized. After 7 hours they decided that she had a urinary tract infection per her UA dip results. They gave her an antibiotic shot of rocephin and gave us another antibiotic to give orally at home. She felt a little warm when they were discharging us, but the nurse said we would have to wait for the doctor to write another order for Motrin if we wanted it. We decided to leave and just give her the Motrin at home.

We got home after noon and Brandon went to work. I sat around with Ellie as she slowly appeared to be getting more ill. She fell asleep on our living room floor on her little sleeping bag and I sat there with her. As she slept her face began to become flushed. All of a sudden she had white whelps on top of the VERY flushed cheeks. Her face became so red that it appeared purple around the outline of her cheeks. I was terrified at that point. I gave her more meds and we went into the bedroom. Her fever was unmanageable with Tylenol and Motrin being alternately administered every three hours. We went from 100.1 to 103 within two hours. I called Brandon (who was out having the other antibiotic filled) and told him we needed to head back to the hospital b/c she wouldn’t drink anything and her fever was climbing.

I had planned on this (God prepared me for this), so I already had bags of clothes, snacks, books and the car TV ready to go. To be honest I was absolutely terrified. The only time I can remember experiencing that type of fear was when the doctor called me that dreaded afternoon in June and told me that Bennett was dying and we needed to get to the hospital immediately. It is a feeling of complete helplessness. You are at the mercy of our Lord and the medical professionals that are here to help. When we arrived at TCH at 6:30 we were greeted with a much different scenario that we had seen just 13 hours earlier. There were at least 300 people (turns out at the point we got our room they had already seen 94 kids, and each kid had both parents and some even had their siblings with them) in the waiting area. We anticipated a long wait, but WOW never expected a FIVE HOUR wait!!! The waiting area was turned into a registration center and the hospital entrance had been transformed into a waiting area for everyone. Vomiting kids…kids in wheelchairs that were pale couldn’t keep their eyes open…kids coughing so violently you actually cringed for them. Brandon and I both refused to let Ellie sit in there…or let ourselves sit for that matter. For 4 hours I strolled with Ellie in her stroller outside the hospital in the misty, damp weather. Brandon stood by the sliding doors listening for them to call our name and the plan was for him to signal to us when it was time. We actually contemplated leaving at a few points, but we had been waiting so long that we figured we should just stick it out. After four hours Ellie fell asleep and I decided to park her stroller in between the sliding glass doors that lead outside to avoid the damp weather and the other sick children. An hour and a half later we were still standing there. Now imagine this…I had only had 2 hours of sleep at that point, I hadn’t eaten in over 24 hours and I had been standing for five hours waiting for a room at the ER. I was crouched down in front of Ellie’s stroller at my breaking point praying to God to please help my baby. I was physically and emotionally exhausted.

FINALLY, they called our name. We went back and the nurse walked us into a room with two beds. I looked at Brandon and I think he knew exactly what I was thinking. There was no one in there, but the bed was messed up, so I knew they still had a patient in the other bed. I asked the nurse if there was another patient and said yes, some sort of asthma issue, but she wasn’t sure of any other underlying problems. STOP RIGHT THERE!!! The rest of the conversation went like this,

Me: “I have CF and I know I shouldn’t share a room with a patient that is suffering from any type of upper respiratory problems.”
Nurse: “Oh, well we usually put patients with autoimmune disorders together.”

I am thinking to myself at this point…I am pretty sure CF is not an autoimmune disorder (not to sound ignorant, but I actually wasn’t sure so I didn’t say anything out loud) and from what I have read I should be careful around other sick people ESPECIALLY people in the ER with serious coughs.

Me: “I don’t feel comfortable sharing a room. My daughter was born three months premature and neither of us can’t risk getting sick. We want to wait for a private room.”
Nurse: “It is your decision. I can’t tell you how long your wait will be, but hopefully it won’t be long b/c you were supposed to be next.”

I didn’t really care as long as we were in a room by ourselves! It turned out to be great b/c we got the same nurse that we had the day before and we really liked her!

The doctor finally came in and told us that they were going to test for RSV (the biggest fear for any preemie parent) and the flu. She mentioned at that point that it wasn’t a UTI b/c her test was negative from yesterday…I was confused b/c the doctor that discharged us twelve hours earlier told us that it WAS for sure a UTI. I was so angry that the first doctor had misdiagnosed Ellie and given her an antibiotic for no apparent reason. Oh well, I really just wanted them to fix my baby. A few hours later (the RSV results take 2 hours to get back) they came in with no answers. They couldn’t find anything…which was good and bad. I was relieved that it wasn’t RSV, but I would have loved to have known what was wrong.

Anyway, VERY long story short she has a virus. We got home right before 6 in the morning and went right to sleep so thankful that we were at home again…until reality hit that I had to be back at the hospital for my appointment at the CF clinic in just a few hours. No rest for the weary!

I was hesitant about leaving Ellie, but I knew I had to make the appointment and her fever was being controlled by the Tylenol and Motrin. Both Grandma’s came over to take care of Ellie b/c taking care of a child that sick is a two person job!

I wasn’t sure about what to expect at the doctor and to be honest I was way too tired to even be scared! I was SO pleasantly surprised by the entire staff. They are definitely the BEST group of medical professionals (aside from Bennett’s angel nurses) that I have ever had the pleasure of meeting. I felt so safe and welcome from the minute I walked through the door. It was a dream come true for a “germaphobe” like myself b/c everyone wore gloves (including me) and used hand sanitizer like crazy! You could have eaten off of the floors in that office!!! I started with the pulmonary function test and it took a little practice for me to get it right. Then I met with the RT (respiratory therapist) and she showed me how to use a flutter (it helps stimulate the lungs to help loosen up the mucus…I think) and talked to me about meds. Then the nurse came in and she was AWESOME! Our personalities were similar and she was so patient with me. Two and a half hours after we got there (we were busy the whole time) we finally met the doctor. I have to say that she is incredible! I can’t even describe what a relief it is to have someone like her on my team. The first thing she said to me when she popped her head in the door just to say hi was, “I can’t wait to get in here and talk to you about your very interesting situation…” Brandon and I just looked at each other and laughed…only me!

Anyway, she was referring to Bennett and how she thinks he really did have CF. She said that even though Brandon’s first limited CF screen came back as having no mutations she still wants him to do the full Ambry genetics screen. She said she wouldn’t be surprised if Brandon was a carrier of a less common mutation and that Bennett had a combination of that with my delta F508 mutation. Her instructions were to get a hold of Bennett’s DNA report from Women’s hospital and have it sent to her…
She said that she thinks we will be able to do our IVF again, but obviously we have some risks involved. She doesn’t anticipate my body being at risk, but she will follow me “very closely” during my pregnancy if it works out that way. I am not going to lie, I was a little disappointed and scared at that point, but I trust her and I know we need to believe in what she says. I want another baby so badly it hurts, but I would never want to put another child through what Bennett went through… EVER…no matter what! So, we will take our time and follow this path that has been carved just for us by Him and have faith in whatever the outcome may be. (I have to say this for all of my friends that have been reading The Shack…this was a perfect time in my life to read that book!!!)

Anyway, she went on to say that I will have a CT scan and blood work next week. She said that she expects to find some issues based on the two mutations that I have and the PFT, but nothing she can’t keep under control with meds. It was funny b/c I must have looked worried, so she said, “Look, this disease started the minute you took your first breath and we have thirty years of catching up to do, even though I don’t have a crystal ball I feel certain saying that with the right combination of meds and a little tweaking based on what fits into your life, we can manage this disease.” I know my CF friends know a lot more about the numbers from the pulmonary function test and I need to learn about that, but she was a little concerned about one of the numbers. I’ll have to study the results and do a little research to figure out what she was talking about ~ I was on information overload that the end of the appointment! So, anyway I feel good about this. It’s real and it’s not going to just go away, but I have the dream team to help me along the way!

Now, I have to run and get ready for a really big night. I can’t say why right now, but look for some really good news tomorrow…


Tuesday, February 10, 2009

102.7...NOT a radio station

102.7…no, that’s not my favorite radio station here in Houston…it was Ellie’s temperature tonight after her bath.

“I thought Ellie was feeling better?” you ask.

“I THOUGHT SHE WAS TOO!!!” I answer.

What is going on with my baby girl? Does God understand how excruciating it is for me to worry about her being sick? Of course He does…so, what is the lesson I am supposed to be learning from all of this? Obviously, I realize that is something I will have to figure out ~ in all of my spare time.

So, here it is midnight. I am already sleep deprived (my own fault) b/c I stayed up until almost midnight reading The Shack and Ellie woke up at the crack of dawn b/c she fell asleep at 7:00 on Sunday night. I had a million orders to complete today, so I worked from 9 am until 8:00 tonight…taking the obvious breaks in between to take care of Ellie and make dinner. Imagine my shock, when I picked Ellie up at 8:30 to rock her and she was burning up. I thought it was because she was wearing a long sleeved night gown and running around like a crazy lady. About ten minutes later she was still warm ~ really warm, so I decided to take her temp.

94.4…97…99…101…102…102.7…WHAT!!! With panic in my voice I tell Brandon that we need to prepare to take Ellie to the emergency clinic. He looks at me like I have lost my mind. I mean, Ellie is running around the house NOT acting like a child who is running almost 103 degree fever. Instead, we give Tylenol and call the doctor. He gives us instructions to follow and if her temp doesn’t decrease after Tylenol and Motrin we need to go to the ER. What a long wait it is in between those meds. Two hours after the first temp check her fever is down to 100.1. However, as we sit in bed (yes, she is still awake at 12:10 am) I can feel her body getting warmer. I am watching the minutes tick by slowly until I can give her the next round of Tylenol at 1:30 am…

If I wasn’t so exhausted and petrified I would be reading my book b/c I am so anxious to finish it…oh, well…it can wait until tomorrow.

Please keep our little angel in your prayers as she (we) battles this infection that is attacking her little body. I can only pray that this fear I have over Ellie being sick will lessen as times goes on.

Also, there is a sweet little angel that has been in my prayers for the last few weeks. Cora Paige was a beautiful 10 month old little angel who was diagnosed with cancer about three weeks ago. After putting up a courageous fight she went to join Jesus yesterday. I read the news this morning with tears sliding down my cheeks. Immediately, I tried to think of something to do for this family. However, having been in their shoes I know that there is nothing that I can do to ease any of their pain. Please keep this young family in your prayers as they gather all of their faith and strength to bury their only child tomorrow.

I will update tomorrow morning…after my sleepless and hopefully uneventful night…and after our trip to the doctor.


Tuesday, February 3, 2009

Our hearts are on a mission

We have been so occupied with work the last few days that there has been little time left for fun stuff like blogging!

After my CF diagnosis I decided to step away from the monogramming machine and take a break. Well, I did and I really enjoyed it, but this week is business as usual! The weekend was spent nursing our still sick little girl back to good health and getting together an order of 40 personalized koozies for an area private school. Sunday was a break b/c of THE Big Game...what an exciting one it was! Monday morning we hit the road running...or rather the machine monogramming! I was so proud to finish the BIG order of 40 in one day wrapped and ready to go! I am that good!!! :)

Today was gymnastics for Ellie and this is another frustrating blog on its own. I mean why do people bring their sick hacking cough having kids into a gym to rub all over the equipment and basically germ infest all of the other kids??? Is it not common sense to keep a child out of a group setting if they are couging up a lung and can't seem to cover their mouths?!?! This is definitely the reason I have been so protective over Ellie for the past two years. I fear parents like those in my daughters gymnastics class. I held my tongue today, but the same can not be promissed for next stay tuned!

Now on to our weekly pep rally for our March for Babies team: TEAM CHUNKY MONKEY with donations I have received at our house we are up to $600
So, 82 more days to raise money for march for babies and Team Chunky Monkey. There are so many ways you can help Team Chunky Monkey so that we can help March for Babies. The banner on the right as well as the very cute and personalized button will take you directly to my page which is: Also, you can add our button logo to your blogs, facebook, myspace...whatever can accomodate html.

Sponsor Our Walk: Even the smallest amount of money can accomplish amazing things (just as the smallest babies can.) You can donate by credit/debit card, PayPal or cash/check. This does not sign you up on our team. This is a good option for those who wish to donate, but are unable to walk on our team.

Join Team Chunky Monkey: Just click on Walk With Me. From there, you can begin collecting donations to meet your own goal which will go towards the team goal.

What if you want to walk, but do not want to collect donations? Just click on Walk With Me and set your goal to be the amount of money you wish to donate. Then, donate to yourself and show up to walk.

What if you want to walk, but are unable to donate yourself? Just click on Walk With Me, set a goal and begin collecting donations from others.

Our goal is to have our shirts ordered by the middle of March. We will be providing Team Chunky Monkey t-shirts for all of our team members (donated directly to us or raised money on their own contributing to our team goal) that come out to support us on April 26 at Robertson Stadium at 9am. We have 82 days left to raise about 2400. That comes to about $29.27/day. If we could get 6 friends to raise $5/day we could reach our goal. As simple as this sounds, it’s only with your help that we are going to be able to reach this goal. Please share our blog site with your friends by linking it in emails or posting it up at work. You can even link our March for Babies sticker to your blog. Let them read our story to see how much this organization means to our family and what it has done for us and so many others. The future of preemie babies is counting on us to help them…and we are counting on you to help us. Together we can make a difference!

Many Blessings for all of your continued love and support,